November 19, 2008

Relapse.

Thanks to Sis #1 for this:

Support this blog. Pretty pretty please.

See "Read More" for well, uh, more.

I had a feeling this time like I did last time. Saying goodbye to Zoe and my parents Tuesday morning was agonizingly hard; like I instinctively knew I wouldn't see Zoe for a long time. I did some grieving in the car on the way up from San Antonio. I allowed myself the full knowledge of what this relapse means. It wasn't a maybe to me. I just knew.

They are talking about a 2nd transplant for me. Same chemo routine as well with some modifications.

I get a lovely bone marrow biopsy and a line in my arm today Thursday. Sadly I know the drill. I got some spinal chemo today and will have more throughout the night.

My heart just hurts, but I was not surprised by this outcome. Please pray for my family and my daughter. I feel really defeated and am trying to rally. I think my chemo this time might be named Chuck Norris or Chemobama. I need some cancer ass kicking meds, similar to my Uma chemo.

I'm tired. And I can't tell you how much I really just want to go home.

I can do this, but it really really hurts. II is so much harder than before. I'm now no longer considered a survivor. I have a long road ahead of me and am much more afraid this time.

I love you internets. I miss and love my wild bird-talking daughter ever so much.

Headed to Houston

Today was bizarre. I woke up to get Zoe ready for school. Dad has Monday's off, so he took her to school. I went right back to bed and then slept until 1pm. I ate a bowl of Grape Nuts and then passed out until 3pm.

I sent a message to my docs at MD Anderson. They told me to come in right away. If I'm really bad off, I will go to the emergency room, but most likely I will head to my doctor's office on Wednesday.

These new symptoms are totally similar to relapse symptoms of leukemia. I'm still trying not to freak out.

I can do this. My bird talker needs me.

Your assignment today - send prayers and good vibes my way (once again) please. Thankyouverymuch.

Black and Blue

Went to a school fundraiser tonight. It was really great to get out for the night and wear grownup clothes. I could never be a model because a) I hate taking pictures of myself and b) I always have the worst facial expressions!! My makeup looks much nicer in person although I was feeling pretty but realized when I got in my car to go home that when I reapplied my lipstick I had it all over my teeth and no one told me - GAH!

All my pictures look about the same because I take them in my car with my dumb cell phone. I can't figure out the viewfinder when I take my own picture. But here they are.

Insurance stuff is very very slowly detangling. I need to see a doctor for some labs, but cannot incur that expense; especially when hope is on the horizon. (and thanks for the paypal donations. I can't see the info, but hopefully will get email information to thank you personally. How awesome of y'all.)

I can do this. I'm bruising, but not giving in.

Your assignment today is to say hi. Pretty easy, huh?

A black and blue mess

Still uninsured. Still a mess.

Still have weird scar tissue on my lower back. I think it is in the spot where they do my left bone marrow biopsies. I've lost so much weight you can actually see it poking up.

I am bruising like crazy too. It worries me a little bit because that is a symptom of leukemia. I have a five inch bruise on my stomach. I took a picture but it looked too gross to post.

I was sort of glad to read about the marrow foundation running out of funding. That means many people responded.

Pretty remarkable story!! Doctors say marrow transplant may have cured AIDS.

BERLIN - An American man who suffered from AIDS appears to have been cured of the disease 20 months after receiving a targeted bone marrow transplant normally used to fight leukemia, his doctors said.

While researchers — and the doctors themselves — caution that the case might be no more than a fluke, others say it may inspire a greater interest in gene therapy to fight the disease that claims 2 million lives each year. The virus has infected 33 million people worldwide.

Dr. Gero Huetter said Wedneday his 42-year-old patient, an American living in Berlin who was not identified, had been infected with the AIDS virus for more than a decade. But 20 months after undergoing a transplant of genetically selected bone marrow, he no longer shows signs of carrying the virus.

"We waited every day for a bad reading," Huetter said.

It has not come. Researchers at Berlin's Charite hospital and medical school say tests on his bone marrow, blood and other organ tissues have all been clean.

However, Dr. Andrew Badley, director of the HIV and immunology research lab at the Mayo Clinic in Rochester, Minn., said those tests have probably not been extensive enough.

"A lot more scrutiny from a lot of different biological samples would be required to say it's not present," Badley said.

Marrow Awareness Month - Join Online Free!

Thanks Rachel Y

Save a life. Sign up on the National Marrow Donor Program Registry.

Join Now

You can join the donor Registry online today at no cost to you. In honor of Marrow Awareness month, Otsuka America Pharmaceutical, Inc., has provided an unrestricted grant to cover the cost of tissue-typing tests for potential donors who join online.

Join online for free while funding remains. Usually it costs $52 to tissue type the donor.

It's easy to join:
Step 1. Confirm you meet basic donor guidelines.
Step 2. Complete the online registration form. This step will take about 30 minutes. To join for free, you must complete your online registration before November 30 or while funding remains.
Step 3. Use the kit mailed to you to get a swab of cheek cells. These will be used to test for your tissue type.

Seriously, it's as easy as a cheek swab. If any of my readers end up donating stem cells to a patient, I'll come hold your hand or send you a pie. You never know. You might save an adorkable girl's life one day.

Gain Some Perspective, Geniuses

Uh. Yeah!

I'm going to tell a few of you off, but read this over and over until you can admit to yourself that you need some help. I love you. I always will. All of you, please remember this:

As long as I'm living, I'll be waiting
As long as I'm breathing, I'll be there
Whenever you call me, I'll be waiting
Whenever you need me, I'll be there

[deb_bitch]

I'm in a bad bad bad mood.

Conversations with me:

"I'd rather be dead than in so much pain like you are."

HERE YOU GO!
1-800-273-TALK Suicide Hotline

1-800-448-3000 Depression Hotline

I'm sick of it. I'm sick of your self-pity. Quit piling shit on your head, as Momo G would say. You all may never ever ever speak to me again, but it's much better than listening to how you have such a horrible life that you'd rather die. I'm here for you, but I can't take that crap anymore. It makes me sick to my stomach. It hurts my heart and hurts my feelings.

I'm trying so damn hard, and so many of my friends are trying to live through treatment. Trying to live through surviving. I have seen so many of us fight like hell to live. Just to live. Live through pain. Live through sickness and poverty, nausea and agony without giving up or losing hope. And it's not just cancer. There are so many that live day to day with chronic illness. With severe depression. With disability. With mental illness. My military friends see so much death and destruction, I don't know how any of them don't lose their minds. It's not an easy thing, but we still do it because our will to live is overpowering. It just is.

I don't even pray anymore that they (or me) thrive. After what we've experienced, it's enough just to ask that we be allowed to grow old. I have given up on love, on feeling great again, on feeling powerful and strong physically (at least for now). But I will never give up on life, even if I know I'm dying. Or on finding joy. Or being alive! I just want to have more days where I'm not in severe pain than not. I will fight death so I can watch my daughter grow up and laugh and find joy. I falter sometimes, but not that often, and not for long. Zoe MAKES me not give up. She truly is the keeper of my hope.

And YOU have the fucking nerve to tell me that you want to die? FUCK YOU! I mean it - FUCK YOU. Even jokingly, still, #^&@# you!!! If you had any sense whatsoever, you'd apologize to me. I don't feel your apology when you say you are sorry you affronted me. I want you to KNOW why what your said is inappropriate to say to me or anybody actually. And really feel sorry that you didn't get that point. That you don't get that point because you have your head up your ass feeling sorry for yourself all the time.

And then you should send me flowers because I'm awesome or make a donation to the Leukemia Society in Brenda's name. I'll forgive you because I know your agony, but I still am pissed at you. It's not about you. It's not about me scolding you. It's about ME getting angry. Tell your priest or counselor, but if you constantly Eeyore, leave your friends and loved ones out of it. You're basically telling everyone to fuck off because we aren't important enough to live for. I know how that feels, I've been there. But I also know that I am resilient, that I was being unfair, and I will persevere. I will try as hard as I can not to hurt my loved ones. That I also owe it to all my friends who didn't make it.

I've seen them die. So many of them. I've mourned. And agonized over people that died too early. People who just couldn't survive. They didn't make it. Their families who lose so much. For my army penpal, Stephen Maddies, who was 18 days from coming home before he was picked off by a sniper.

I can't tell you how many nights I prayed and prayed and cried for my friends. For my daughter and my family. For my beloved friends who want so much to live. When Brenda was dying, I thought God was going to cover His ears just because we all prayed so hard for her to live. I tried to will her to live and Paula and Ashley and Pam and all the many others. Knowing that one day people might be doing that for me. That in a heartbeat it could all happen to any of us. Dying really isn't anything you can control. So I try not to worry about it. It just makes me cry. And I give my worries up to God. I let people in. I find the joy instead of constantly dwelling on the sorrow. Be grateful for the things and people you do have instead of balling up into yourself and becoming so self obsessed and absorbed. You all have children for God's sake and many many people that love you.

Honesty, I think my life is pretty damn great. Even through all of this, I still think I'm lucky, blessed, grateful, etc. I have my family. I have friends. My life isn't always perfect, but sometimes I just want to say FUCKING COWBOY UP! Everyone has problems. I know my family takes care of me, don't tell me I'm spoiled. I'm entirely grateful for that. But I am the one in pain and I'm the one taking meds and seeing doctors all the time. I'm the one that KEEPS me alive. Don't you even think that for ONE DAMN minute that I wouldn't trade everything to get my old life back. To being able to take care of myself and feel better and normal. To working. I'm not lucky. I'm grateful that I do have people that are willing to help me, but it all starts with you allowing people in. By asking for help when you need it. And by getting the help instead of being so damn stubborn and try to do it on your own.

I know that your problems are serious and seem overwhelming. But sometimes you just have to deal. If it's something you can change, then change it - make a point to change it and DO it, don't just talk about it.

But if there is nothing you can do, don't let it shut down your entire life. Stop freaking out. It's not like that will help or make it go away. If you can't function or cope, then GET SOME HELP!!! Not only that ACCEPT HELP from people that love and care about you. No man is an island.

Maybe if you did get help, or allow people in your life, rediscover your joy and what you are grateful for, you might actually BE able to cope with your problems. Not that it will make it go away or change anything, but it might help you deal with it instead of freaking out and losing your focus.

I think one of the great things I inherited from my mother is the ability to persevere through the hard times. Of course everyone gets down once in a while. But even when it's been hard, I still can find something in myself to get through it all. I think coming to the realization "that it is what it is" (thanks Sis #1). I know that everyone deals with things differently, but when people tell you ... hey, maybe you need to get some help and you refuse, then you need a kidney punch. Stop wallowing. You know you're wallowing. Stop piling shit on your head and feeling sorry for yourself.

Because, you know what? WE LOVE YOU!! But even people that love you don't want to hear about your issues if you don't deal with them and constantly talk about how shitty everything is. Fix it or shut up. Maybe it's time for some therapy or some pills.

I know that there are people who are way worse off than I am. I'm not starving. I have a roof over my head even if I don't own it. I can see and hear and laugh and talk and write. I'm not dying, but guess what, I'll still find joy until I stop breathing. I will find things to be grateful for every day. I will still laugh and read jokes and find humor in the absurd.

Tell jokes when you are getting a bone marrow biopsy and then I'll tell you HELL YEAH! If you are sick and you can plant tomatoes and walk your dog - HELL YEAH! If you can wear full makeup when you're bald, barfing and unable to walk and still have some attitude - or work part time and raise your child and kiss your husband when you feel like crap - or take gorgeous photos when you are dealing with depression -- HELL YEAH!! If you get your ass to the gym, even if you weigh 300 pounds... Well you know what I'd say. Do it! I'll high five you. Stop and "accept the good."

Now that's called perspective.

I love you, but I want you to try. Please get help.

Just this very moment I heard Lenny Kravitz's song "If You Want It.

Looking through life's window pane
Don't you sit around wasting time
That would be a crying shame
There's a power that's deep inside
And it burns just like a flame
Just believe and you will see that God
Will shower you like pouring rain
If you want it
You can change your world today
If you want it
Just break free and walk away
There's a reason
For you to explore
Why you're here
What do you say
And the beauty is that you're the one
Who controls just how you play
There's a choice that you need to make
One is ore and one is clay
So drop your chains and take up your cross
And let Jesus make your way
If you want it
You can change
Your world today
If you want it
Just break free and walk away
If you want it
You can change your evil ways
If you want it
Just break free and walk away

If you want it
You can change your world today
If you want it
Just break free and walk away
If you want it
You can change your evil ways
If you want it

Just break free
And walk away
-----------------
I can do this. I won't give up. And I won't give up on you. [/deb_bitch]

Your assignment. Check yer perspective today.

Create Your Own

Songs that came on while I was writing this:

Life Without You - Stevie Ray Vaughn
I'd Rather Go Blind - Etta James
Beatles Covers - Imagine by Jack Johnson
Oh My Love - Jackson Browne
Beautiful Boy - Ben Harper
For the Weary - Allison Sattinger
Why Do I Love You - Jesse Dayton
Reservations - Wilco
Dumb - Nirvana
Christmas Time is Here - Vince Guaraldi Trio

Christmas Time Is Here
Written by Vince Guaraldi, Lee Mendelson

Christmas time is here
Happiness and cheer
Fun for all that children call
Their favorite time of the year

Snowflakes in the air
Carols everywhere
Olden times and ancient rhymes
Of love and dreams to share

Sleigh bells in the air
Beauty everywhere
Yuletide by the fireside
And joyful memories there

Christmas time is here
We'll be drawing near
Oh, that we could always see
Such spirit through the year
Oh, that we could always see
Such spirit through the year...

Love love and more love.

paypal - a nifty new button

Thanks to Sis #1 for this:

Support this blog. Pretty pretty please.

I don't like ads on my site. I don't like to mess with my blog a whole lot (e.g. the horrid orange experiment change). I just like to write. And I like to blog. I want to write. And I'm not working anymore. There are lots of reasons for that, but they hurt my head just to think about. So here I am. I hope to be here for a heckofa long time too!

I can do this. My brain is on overdrive and it's like that scene from Jerry Maguire where he stays up all night writing his mission statement. It's a great scene. I love that movie.

I have a vision and I'm going to be recruiting soon. I have a whole debu_team behind me!

Nabbed from my writing guru Jeanne:

But I still need to make some money from the blog, which takes the best hours and the best energy of my day. [aside] not as much of my energy as Jeanne. I haven't been putting much time into blogging lately, but I love it. And eventually I know that God has a plan for me and somehow my writing and blogging and passion about leukemia awareness will be in that plan. Anything can happen. I just have a feeling.[/aside]

The result? The donate button.

Thank you for any cash that you might be able to spare. I appreciate it more than you will ever know.

A special thanks to the cancer patients who have sent me donations, and then apologize for not being able to send more!

I know who my audience is, so I expected that if people were able to send a donation at all, it would be in the $10 to $20 range. Those $20 contributions are keeping me at the keyboard, blogging away.

A note about using PayPal: You can make a donation by clicking on the donate button and going through PayPal without setting up a PayPal account if you don't want one. There is an option to simply pay with a credit card.

Man-o-gram - More Parity in Cancer Awareness Advertising

No lie.

And I'm sorry if some of these ads are explicit, but gosh, if we can have the kind of pinkgasm with Breast Cancer Awareness to the point where it is in grocery stores, charity races, clothing, kitchen kitsch, schools, ribbonsgalore, decorating entire buildings swathed in pinkstink, why not make other cancers more accessible and talk about them as well? When will it be ok to speak the word "prostate or colon" cancers without the usual *whisper?*

The Google. She scares me. I just found my favorite new site. The gofugyourself.com of advertising. I have yet to reach the end of the internets. Must sleep soon.

Some parity for the boys. Again, some very sad, some ridiculous, some surreal, some informational, but it doesn't seem quite as humiliating as Jingle Jugs for Life. Then again, check out Carpe Testes: Be a Man - Self Exam. Looks like men perhaps are more visual and need videos?

Prostate Cancer Earrings?? They will make anything just to make a buck!

I liked this ad:

Song Lyrics

Prosty the Spokesgland
Is a prostate gland, we're told
Buried deep inside largely out of sight
He's ignored by young and old

Prosty the Spokesgland
How we hope that lump's benign
But it's hard to say
Cause the only way
To diagnose and treat is blind

There might just be some cancer
In that lump they found today
But we really can't be sure right now
Cause you can't trust the PSA

Prosty the Spokesgland
Spreads the word on what we need
No more pokes and prods
No more biopsies
How about some imaging?

Prosty the Spokesgland
It's time that we all gave a damn
Cause we know he needs
New technologies
Like a hi-tech Man-ogram

Lumpety lump lump
Lumpety lump lump
Look at Prosty grow
Lumpety lump lump
Lumpety lump lump
No more bending over so

Parity in Cancer Awareness Advertising

My beloved Jeanne S sent us to Hoyden's awesome site Hoyden About Town and a new entry for Jeanne's How Low will Komen Go Contest. I know Jeanne's busy, so I'm posting a few new entries here. I so *heart* Jeanne.

What I learned from all of my Googling is that no matter what type of cancer you type into Google, it always brings up breast cancer awareness stuff. Kidney, Pancreas, Colon, Thyroid, Leukemia, Rectal, Lung, etc etc etc. My generic search term was "_______ cancer" awareness. Sometimes I would include the word advertising. On one hand, yay for getting the word out about breast cancer, but shit, the rest of the groups need some time too. Some of the ads were disgusting. Some were thought-provoking. Some were ridiculous. But Google and Google Images is an amazing tool. Although I could spend all day finding this stuff.

Today was kind of like work, when I used to research terms about soil and sediment sampling. (I used to be an editor and read EPA documents - yawn) I have to make myself eat as I kind of lose my appetite. Cancer advertisements - YUCK! At my office, the grossest were industrial blenders used for testing animals for PCB contamination. Rat and possums in blender makes for a nasty smoothie.

So, Hoyden, who is a girl after my own heart, enters the HLWKG Contest with the following entry. It was so brilliant I had to snag it.

"Oh, for fuck's sake. The latest in the Mmm, Sexy Pink Breast Cancer! Save The Boobies Awareness sweepstakes comes from Mount Franklin, purveyors of pointless, wasteful, plastic-ridden, environmentally unfriendly bottled water. They've been doing the pink lids for a while, but these "every mouthful" advertisements are new."

"Two water bottles with pink lids, photographed from above. See? They look like boobs! Boobies that could fit in your mouth! Cancer's so sexy! Hahahaha!" The text reads:

Every mouthful helps
RAISE AWARENESS
for breast cancer research

So I decided to Google "CANCER ADVERTISING" and "FUNNY CANCER ADVERTISING." Some are clever, some are disgusting. I wonder how effective they are. Credit for many of them goes to Adverbox Advertising Blog.

SKIN CANCER

"Please take care this summer" Skin Cancer Awareness Towel.

Skin Cancer Awareness (kind of NSFW - but not too bad - Just damn funny so watch the whole clip)

CERVICAL CANCER
EEKS from Kristinwalldesigns. My mother looked and said, "Well she certainly couldn't diagnose herself THAT way."

THYROID CANCER

"The fastest growing cancer among women is not what you think."

Hmmmm what could this be? Could it be BOOBIES? Wowweewoowee!!!!

LUNG CANCER

Much too soon for this ad: "Terrorism-related deaths since 2001: 11,337 - Tobacco-related deaths since 2001: 30,000,000"

A panel was placed in smoking areas, featuring a cemetery view from the top. Wonder if that would make anyone quit?

COLON CANCER

The Super Colon

Ok. I've had a colonoscopy, so I thought this was totally cool - click the next link for some additional pictures. It's an 8 feet by 20 feet inflatable replica of the human colon. And it travels around the country to raise awareness of colon cancer. An inflatable, 20-foot long, 8-foot high replica of a human colon, is an interactive educational tool that is teaching people all across America that colorectal cancer is preventable, treatable and beatable! As visitors walk through the Super Colon, they get an up-close look at:

* healthy colon tissue
* tissue with non-malignant colorectal disease like Crohns and colitis
* colorectal polyps
* various stages of colorectal cancer

This advertisement didn't quite cut it.

Various pinkishoctober boob, er tasteful, advertising. Meh.

Check yer boobs. Just not while driving. Thanks Ad Blog Arabia (not going to link b/c of odd searches) and issmatblog.wordpress.com
CLICK PICTURE FOR LARGER IMAGE

Yay for Pink Crap - Feelup yer boobs!

CLICK TO ENLARGE THIS BEAUTIFUL [hork]ADVERTISEMENT[/hork]

Hey Fiona, this Mouse Pad came from Hong Kong (Not really safe for work, but click on the link if you can) As it says "EXAMINE REGULARLY!" Like any self-respecting woman would have that mousepad on her desk.

And my supreme finalist for the How Low Will Komen Go contest is this rubbery boob mousepad.
ENGLISH TRANSLATION: Frequent massaging breasts enables you to detect breast cancer before it strikes. CLICK ON THE PICTURE TO SEE THE EXTRA LARGE DEGRADING IMAGE.

Ok. So how's that for a little parity.

I can do this. I'm up against insane ads.

Your assignment today is to send me a link if you find one on some wackadoodle cancer ads.

I did find a few leukemia ads. They totally of broke my heart. It's like the other ads are all jokes compared to these.

It doesn't get much sadder than this. Especially when you look at the big picture. Saddest funeral ever.

October 21, 2005

Three years to the day a trip to the ER saved my life. And I'm still here. Without energy to write anything, but here I is.

I kind of miss my old blog. Work. Weirdos. Life. Love. Nothingness. Pain and Hope. It hurts to read some of it. Especially on days that I feel like cacapoopoo. Reading October 2005 makes me cry and laugh. The greatest of emotions. The ache of those words. That time.

Three years to the day, my friend's twin girls were born. I don't know why, but at the time it felt reassuring. Life. Beautiful perfect little girls. Little twin angels. Then I met you and you and you. All my internets.

Today:

I took cough syrup and it made my nose run while I was coughing up my entire spleen.

I didn't feel like eating whatsoever. I had Sixbucks.

I was online way too much. Dude city.

I have a new penpal overseas. I be prayin for the dude. He thinks I'm cute.

Talked to another dude tonight. He sent me some pictures which were oddly wonderful because they were artistic and he's beautiful. Funny, he was pretty cool. You think that a man that gorgeous would be so full of himself, but he was amazingly insightful and thoughtful. He is one of those people that you hope to know your whole life.

Got called a pussy by this stuck-up Republican dude because he has rheumatoid arthritis and doesn't take pain meds. I told him to go fuck himself. With the appropriate punctuation.

I got 9234823098 text messages from a secret agent. No really, he's some kind of spy or something.

I got 2 text messages from Tim. Oddly familiar and sweet.

And I met a San Antonio Tim who took Zoe and me out to eat sushi. He's a rare true Southern gentleman and he got Zoe's shoe off the roof.

Zoe read her book. It's cute when she can't read a word and she spells it. I half hear her and she has to repeat it several times before I can figure it out. I'm a site reader. She brings home like six library books every day. Bookmarks in all of them. Like mother like daughter.

I prayed. I prayed a lot today.

Bren/Cody's Mom reminded me of Yatzee. We used to call it Snotzee and it's too gross of a story. Even for me.

Every time I get a headache, and I think it can't get any worse, it does.

Zoe is bright and lovely. A bright shining star. Showing me the way. Just when I think I couldn't possibly love that child any more, I do. I just do.

Thank you God for my three extra years. I pray for more, but I'll take what I can get right about now.

I think Nico is dying. I'm the last one now. The last one of 25. How does that make sense?

Pray like hell. I miss all of them. So many nameless familiar MD Anderson faces. All gone. And Brenda. And Sarah and Nikki, and Clem and Paula and Ashley and Victoria and Liza and Robbi and Robin and Pam and Cookie and Joan, and sweet Kadin and Eric and Laiken and Steven, and S's Gayle, Nick Harriet and Joseph, and there are so many I begin to forget and then I remember and remember and remember and then Zoe.

I can do this. I just can.

Your assignment today is to listen to music and just dance around. Thank you Sisters for my iPod. It is my memory and my joy. It makes me cry and laugh at the same time. It just does.

Thank you.

I just coughed up a lung

I still have this cold. It's more of a non-stop cough.

I have had it for 8 days now. Mom had it and she seems better already. I don't have a fever, so I really don't want to go to the doctor and pay for it because I STILL DON'T HAVE INSURANCE!

Good thing I'm in a great mood. I think I may sleep today since Zoe has brownies after school. Friday night her troop is spending the night at the zoo in the education center. How cool is that?

Although she's very conflicted because Friday is the opening of High School Musical 3 (blegh).

I need to get better asap. We are having a board game night on November 1st. A gaggle of 8 year olds. It should be a blast - spooky pizza party - woo!

Ok. Lots of paperwork to do today and some sleepage.

I can do this. As long as I don't cough up my spleen next.

Your assignment today is to tell me your favorite family board game. Zoe likes Mancala and I like Scene It.

Sista Power!!

Sis #3 is a freelance internet marketing queen and writer. She just posted a blog with a friend of hers and it has a link to my deb_fund paypal account. It is so humbling, but I appreciate her help so much. If you need: Branding, Information Architecture, Blog or Social Media Consulting, and Newsletter Creation, look my sister up!

Please go check out her post with the amazing Lynn Bender playing to help raise cashamatoma.

Sis #3 also did a Tweeter blood drive in Austin last July and 80 people showed up to donate blood. It was twice the amount of traffic that the blood center usually gets. She's just awesome.

From Sis #2. I can't read this without just tearing up. She posted it on her flickr account for Pink Tuesday.

cancer effects more than those diagnosed...

on 10/21/2005, my whole world, as i knew it, collapsed. my older sister, Debby, was diagnosed with leukemia and from that day forward i would be her 5 year old daughter's surrogate mother for the next 8 months.

it's devastating when you first get the news, and a roller coster of emotions as you struggle with the fate of your love one going through battle after battle... with the disease, the insurance company, daily life, treatments, colds that could kill...

as the sister, it was my job to keep the calm, to raise her daughter as my own, and to have an exterior of "life is normal" when inside you are feeling anything but "normal."

while this is breast cancer awareness month, for me it is the month of awareness of the disease that almost took my sister's life.

for more information about my sister and her struggle with leukemia, go to my sister's blog: debutaunt.com/

Ahhhhhhh it was a ....

HAIR transplant that McNotBaldCain was referring to. Because his joke on Biden in the other debate didn't go over so haha funneh, he thought he'd trying it again. While other life-saving transplant patients and I were muttering to ourselves, "Did he just say what I thought he said?"

But in this day and age, honestly I think if you don't go all catface woman or Michael Jackson with your plastic surgery and don't go overboard, so what? I know what it's like to be bald. It's uncomfortable, and I don't think it had anything to do with me being a woman. I felt... exposed. But I knew that mine would grow back. When men add some hair, they look younger. I'm sure it makes them feel more handsome or how they used to feel before they lost their hair.

If women can wear those nasty woven and cheap looking extensions and weaves, have fake boobs and fake nails and fake tans, what's wrong with a man wanting his hair back? And if they can fix it without making it look like a bad rug, go for it.

I actually dig the bald dude look on most men. I like it when they shave it close to the head. (warning, sunscreen is necessary). It's kind of cool looking on men.

I can do this even though I was temporarily flabbergasted by McCain's transplant comment (thanks Jessicacarrot and Collins - y'all rock!)

Your assignment today is to look in the mirror and say, I look damn good, and then check yerself out!

But before you get any plastic surgery, take some tips from this site. It's not called Awfulplasticsurgery.com for nothing.

Poor Janice Dickenson.

And that cute hottie McHotster Mickey Rourke. Although I do believe he initially had surgery after a car accident or injury.

My Insurance Plan is a Cadillac That Got Reposessed, Senator McLame

Senator John McCain - 3rd and final debate against Senator Barack Obama on 10/15/08

That's big government at its best. Now, 95 percent of the people in America will receive more money under my plan because they will receive not only their present benefits, which may be taxed, which will be taxed, but then you add $5,000 onto it, except for those people who have the gold-plated Cadillac insurance policies that have to do with cosmetic surgery and transplants and all of those kinds of things.

See dat right dere. Senator Idontfuckingunderstandmyowninsuranceplan McJackhole just compared transplants to boob jobs?? Or is it rhinoplasty? Brazilian Butt Lifts? Cheek implants? Liposuction?

What the fuck are you talking about? Do you even know?

Cos we all know that transplants are just for the rich people who have Cadillac insurance, right? And your $5,000 tax credit won't pay for squat for people like me. Heck, who can afford a policy for an entire family for $5,000 not to mention medications? And woooowooooweeeewoooo. A life saving transplant? That's a luxury item, like a yacht or a vacation in Italy and Paris for a month. I know my transplant was like a stay at the Trump Plaza in the Presidential Suite. (heck, for what transplants cost, I could have stayed there at least a week)

Actually I don't even have Cadillac insurance anymore. My Cadillac got repossessed and eaten by COBRAzilla a week ago. Now I'm walking or taking the bus until November 1st. And then I'm about to get is a pimped out Pinto, ghettomobile where the rims cost more than the car.

Too bad I didn't get the boob job and a tummy tuck while I had that Cadillac insurance.

Or I guess whoever wins this election will just need to Pimp My Ride

Pay-pals

Well, they are still working on finding out who raided the debfund. Sis #1 knows it was someone who was in her house long enough to steal several checks.

But then the coolest thing happened. She hadn't checked my paypal account in ages and there were a bunch of donations! I have no no no clue to who most of these people are. She's working on getting me the list so I can at least send an email of thanks to them. How cool are the internets sometimes?

I know of one donation though. Button and Bows Photography in Florida. Please check out that site because it is perfectly adorable! Thank you for your support!

I can do this. But I honestly think the orange on my blog is just perfectly awful. I might not be able to hold out until the end of October to change it. Yick!

The Magical Cancer Fund

I see all this pink stuff every October (and now it's year round) and it's very disheartening.

Right now it's serving as a glaring reminder how people are actually making money off of a disease and many of us are completely struggling to make it. If it were not for my family, and the no rent situation, I have no idea how I'd live on the disability I receive every month. And no. I still can't work yet, so don't go there.

What good is awareness and early detection if once you get cancer - any cancer, not just breast cancer - if you can't pay for your treatment? Or your medications. Or health insurance. Or even be eligible for health insurance.

Many are so fatigued, they can't work full time even if they wanted. Many cancers don't end with the end of treatment. They have side effects from the treatment (which sometime end up killing you). They get secondary cancers. They relapse. Or, in my case, I have gotten several different diseases, most likely as a result from my meds or all the treatment I have had.

Medicaid and Medicare sound so magically delicious, but apparently you end up paying much more out of pocket than when you had private insurance. This came from my hospital from a person that helps patients figure out how they can get any financial aid to pay for coverage. Medicare only pays for a few medications a month and you end up having to pay for supplemental Medicare insurance or special prescription plans.

Your private insurance will only last so long, btw. Cobra max now, I think, is 29 months. I'm ineligible for any type of private insurance other than the Texas High Risk pool. The premium is crazily expensive and you aren't allowed to be reimbursed for your premium by any hospital or government agency. MD Anderson has covered the majority of my Cobra payments as I qualified for their financial aid. But come Nov 1st, that ends.

The $4 WalmartTargetHEB prescription generally are only for basic types of prescriptions; like high blood pressure, diabetes meds, cholesterol drugs. Not one of my 28 medications are listed on that list.

I have a dear friend who needs a drug for her treatment. Even with Medicare, she has to spend $1600 on her med co-pay. This is more than what she receives from her Social Security disability payment. And Montel Williams rolling his bus past her house will not help pay for her drugs. Neither will the drug companies because she *has* prescription coverage. Yeah. One drug. $1600 a month. That's really some great coverage.

Pink away. Make millions from and for "the cause." While so many people who are going through treatment or living with cancer struggle to live our "new lives."

I don't have the answer. Even if there was some magical cancer fund, it most certainly would have run out years ago. Awareness. No cure yet. It is too little too late for those of us who have been there. It is depressing to see the cute, pink, ribbon wrapped cancer crap. I don't buy it because I think it's horrible. But I also don't buy it because I don't have any extra money to buy that shit.

Bitter? Hell yes. I'm not shitting rainbows and riding unicorns today. So before you say, "Be grateful, you're still breathing," please just shut up. Go away. I don't have to be chipper all the time and I'm not going to posture like everything is all right. I do that most days of the year and for today I just want to feel shitty. And bitter. And hate people who are profiting off of a disease right now. Go buy a breast cancer Barbie, some pink batteries and drill a hole in your head with your pink electric drill. When you're done, you can patch it up with pink bandaids and then eat a rGB yogurt, lick the lid and mail that bacteria laden lid in to Yoexploit.

I would love to be able to give my friend a million dollars so she didn't have the financial stress to go along with the stress she already has from dealing with her cancer. I would love the magical cancer fun. Don't you think we have enough stress in our lives already?

I have many reasons that I am grateful. I am alive. I have my family and friends. But the struggle to not give up is getting harder every day. The daily struggle of taking meds, feeling like crap, med side effects and wondering if this cold or this cold or this cold is going to kill me is getting really old.

Livestrong my ass. This "new life" isn't all it's cracked up to be. Right now I'm living kind of weak I'd say.

I can do this. I wish someone would start a magical cancer fund. The LLS, Komen, Livestrong, ACS ... how many are helping us... I mean really?

No assignment today. I'm feeling grouchy.

$125

Team Zoe is kind of kaput this year. I've been so pre-occupied that I let my team down.

Anyone? Bueller?

I know so much has been going on, but I adore the gals at the local chapter so much, that I want to raise a bit more. Zoe's goals were way too high for this year.

I also was supposed to come up with a memorial moment. I think it's too late and they probably came up with something else. I had so many ideas, but the walk is on October 25th and anything I wanted to do won't work now.

Ok. Homework this weekend with the Zkat.

I can do this. I have a few weeks to raise over $7,000.

Your assignment today is to donate anything you can to Team Zoe and/or give me an easy idea for a "memorial moment" for the walk.

Love you internets! Special prayers for my Linda T's mom who is fighting cancer right now.

I have a bad sore throat. Of course I got it the day after I lost my insurance. I am coughing as well and am trying to just rest and take some good meds. I may make mom get a strep throat culture just to see if that may be what I have. It sure feels like it.

Mom is sick as well and so is Zoe.

This is scary.

Uninsured

I'm wrapping myself in bubble wrap.

I will have no insurance from today until November 1st. I've been accepted into the Texas High Risk Pool at $671 a month. I'm not eligible to have MD Anderson pay that premium payment as the HRP considers that a conflict of interest. (MD Anderson used to pay my COBRA payment since I qualify for financial aid).

So, I will be scrimping and saving to pay for that until I can apply (or hopefully hear back from) Medicare. $671 is about half of my monthly disability payment. The deb_fund, which might have been able to help out, is on hold until we figure out who it was that stole money from my account (someone who was at my Sis #1's house stole and wrote checks on that account, which is now closed).

I'm really freaked out about the no insurance thing. I hope nothing happens to me or that I need some other medication in the meantime. I'm not sure how many of you understand the implications of no insurance for me.

"Pray like hell."

McCain's health plan wouldn't do me any good. Blegh. Not sure what the answer is, at least until I am able to get back to work. I hate not being able to take care of myself. It's very frustrating.

I think I'm going to take Zkat to see the chihuahua movie again. It was very very cute!

Moving

I walked during Zoe's soccer practice. It felt good. Susie's right. My future plans include moving more.

I can do this. I will make myself do this.

Bubble and Baboon Hearts

I'm exhausted.

[/whinese, apologies in advance]

I woke up this morning with an overwhelming sadness. I can't describe it, but it's like how you feel when you listen to Nirvana's Unplugged MTV album.

Last night I made dinner for an old friend I knew from Austin who is visiting and working in San Antonio for a few months. He's a stand-up comic and is one of the coolest guys I know. He's been living in NYC and traveling around the country doing stand-up. I don't think I've seen or heard from him in over 14 years or so, but he found me online and we traded info. It was great to see him and catch up, but it just took me back a bit and reminded me of my "before" life. It feels like someone else had that life. That version of me never existed and now I have my life of disease and doctors and meds and pain. It feels so never-ending. There are no future plans. There aren't any new goals. My joy comes from Zoe. My mission is healing, but as hard as I try, it is not working.

He saw the slideshow on my MySpace page and I could tell he was visibly moved. He said to me, "You are one of the strongest people I know."

I don't feel strong anymore. I fake it, but I don't feel it anymore. Not one bit. I've been through hell and back, and I just feel weaker now than ever.

I had my checkup yesterday morning at the transplant clinic. I was so tired that I was an hour late. They didn't give me grief because I am so overwhelmed that I think it radiates off of me.

Blood draw. A drop dripped on my sandal and is now a permanent spot on my favorite pair. Counts are ok, but still having issues keeping my magnesium levels up. My blood counts are normal, but generally on the very low side of normal. I feel like a Zombie. Or a Barbie Zombie (thanks Amorette, that made me smile) And can I say, coolest Halloween decorations. Ever! Go welcome her new puppy and see her groovy zombie stuff.

Dropped my steroids down to 4mg from 8, which is nice. He said he didn't like the results from the GI doctor's office. When the GI folks called me, she told me the doctor wanted me to start taking some medicine 3 times a day (yay, even MORE meds for me to take and pay for) for my stomach symptoms. What those are, I'm not completely sure, but somehow she said my stomach is not working right to digest my food quickly enough.

[aside]
The test, which is called a gastric emptying study (yuck), is where they make you eat these radiated and thoroughly disgusting eggs and dry toast and jam, and then you lay still for an hour while they basically watch you digest your food. I felt like I was going to throw up putrid egg all over the place.

I feel sometimes like I'm going backwards. My health is spiraling downward. Diabetes, Fibromyalgia, GVHD, stomach issues, lack of appetite (I've lost 17 lbs in 4 weeks) breathlessness, and my veins in my chest and neck have been damaged from chemo and are narrowed, possibly clotting (CT and ultrasound had different results). They are debating on whether they will put me on blood thinners, but he said he was going to just keep an eye on me for now because blood thinners would be very dangerous to me with my counts.

Last night I went to bed pretty late - after 11pm. I was watching television and started getting major hand cramps. They lasted for over 3 hours. I tried everything. Milk, magnesium pills, water. I have no clue what they are, but it hurts like fuck. It's like my hands cramp and seize up. I've told my doctors, but they never address that issue because there are always more important ones.

I tried everything to make them go away. I wanted to cry, but I was too tired.

Tim phoned me to check in. I think he felt guilty because he was avoiding my calls. I've been pretty hurt about our breakup, and I know he gets frustrated because he knows I love him and how sad I am. I know he didn't intentionally try to hurt me, but I just am so stunned that he isn't going to be in my future. I finally reached him the other night and told him how much it sucks not to have someone care and check in on you (and yes, I have friends/family that do that, but it's just kind of not the same.) I write my blog so people know I'm alive. I'm posting, so I'm still breathing, right?

When we talked it was always about the bad stuff going on in his life and he stopped asking anything about how I was doing. I just stopped even talking about it. I feel like a jerk for telling him about that, but it just is that way. He's so disconnected from me, I don't even know if I'll ever see him again. Zoe's devastated about that. When he called yesterday I was eating dinner and she seemed so happy that he was calling. She ran for the phone and handed it to me, but I didn't have the heart to answer it. She still thinks he loves me and we are going to get married some day. Ah, my lovely, bird-talking hopeful. I'm sick and tired of being... well you know already.

It always felt like I had someone with me going through all of this, listening and really caring about the outcome. That I had someone I could stop being strong around and just be vulnerable for a little bit. For a long time it was Monkeyboy and then I had Brenda to talk about how afraid I am sometimes. How terrifyingly frightened I am sometimes. Then I met Tim and he and I were so great together. I felt safe and loved and cared about. He was amazing and he loved me. He bought an engagement ring back in April. It was so lovely. So beautiful. I found it one day and it hurt so much that he couldn't give it to me. He'd lost his heart. Tin man.

I don't think he sees himself in the same light I do. I adore him. He says I love someone who no longer exists. He's just gone emotionally void towards me, yet I see how caring and loving he is with his children and friends. It hurts so much not to have his love for me. But it is what it is and it won't ever change. I know it as well as I know my own heartbeat. I just have such a hard time wrapping my head around how someone who cared and loved me so deeply can just feeling nothing anymore. I miss him so much. I miss his love towards me. I can't believe how he doesn't even remember feeling that way, yet I so clearly do. I ache for it. I know it so well. And he is sick of hearing about that. I don't think he knows just how shocked I still am that our relationship is over. I feel delusional, like it never happened maybe.

I also miss Seattle. I want to go back, but know there is no way in the world I can afford it. I close my eyes and feel the cool breeze and I can so precisely see the trees and the beauty of Seattle. It was so my home when I was there. It felt natural to be there, like I had been there my whole life.

My health insurance runs out tomorrow. There really isn't a bailout plan in place. Right now it's prayers that one of the two options comes through as I am "uninsurable."

That word reminds me of Amorette's blog where she wrote the phrase "Gravestone payments."

Gravestone payments.

Those words don't go together without inducing a bout of nausea.

I can do this. I'm down, sad, in pain, missing my pink, and someone stole money from the deb_fund (more later on that maybe), but I'm here. I'm breathing. I'm living the best I can right at this moment.

You assignment today is to pray to the saint that oversees medical insurance. Who is that? Saint Augustine of Medicarus, Patron Saint of Hopeless, Expensive Medical Tests and Bureaucracy?

Can I just wrap myself in bubble wrap?

For Jeanne S

At Sam's. Of course it had to be a huMANGous (as Zoe says) Pink for the Cure display.

Comments raging over at Cara Ellison's place on Pink Rage. I was told to fuck off by a pregnant lesbian (although seriously I was being facetious with my comment).

Yo Mama!

Why my mom is more qualified to be VP than Sarah Palin.

1. She can pronounce nuclear.
2. She had seven kids, few babysitters, no nanny, occasional housekeeper.
3. She has not just one but two college degrees. Got straight A's in her Master's program. English.
4. She may be the Antichrist of tact sometimes, but she doesn't have a mean bone in her body.
5. She never gets stumped on topics. She knows about politics, the military, religion, foreign policy, history, terrorism, art, literature, pop culture, poker, sports, geography, fashion, education, current events, Oprah, health issues, and she can cook!
6. She can speak without saying also, youbetcha, maverick (McCain puts the ick in Mavrick), Joe Sixpack, mooseburger, and no weird facial tick or wink.
7. Her nickname is the "White Tornado."
8. She kind. And has a sneaky sense of humor and an acute sense of fair play.
9. She's a great teacher. She's patient, but won't let you goof off when it's time to work.
10. She's practically indestructible. She was doing laundry with a burst appendix and she thought it was just a case of food poisoning.
11. She's from Minnesota. Land of lakes, snow, mosquitoes and tough broads! "Those damn Vikings!"
12. She flew from Alaska to Virginia with four kids under the age of ten and everyone survived.
13. Dick Cheney would cower in fear around my mom and Bush would pee his pants if she uttered one, "Nooooooooo" in their general direction.
14. She bakes muffins.

Wait. Zoe's awake? That little sneaker. Ok. I'll continue this list later.

I can do this. Right after I tuck the bird-talker in bed.

Your assignment is to add to this list.

Orange

I don't dig the orange. I miss my pink. But I will keep pink out for at least the month of October. Besides, it was kind of a pain to mess with.

No Mas Pink

working on my template. hope I don't screw it up too much.

update:
ok, this is the best I can do for now. I love my pink template, but this isn't a breast cancer site. I'll hopefully find one I like better because this orange is hella bright.

Guess it's ok for Halloween??

WWSKD

Just a reply regarding a comment on "Hawktober."

Love you Deb, but I tend to disagree. I applaud Komen for getting the word out there. It really doesn't matter how you do it as long as you do it. There is a reason why Komen rakes in so much money for research. They're aggressive. I think it's unfortunate the LLS doesn't do the same thing...it's all about marketing a brand and a cause is no different.

Yes, Komen rakes in the dough. But at whose expense? Some people, myself included, feel that these cause marketing campaigns take advantage of our fear, and are exploitative and insulting for breast cancer patients (I mean, how does a man with breast cancer feel about all this pink puke?). I'll donate directly to a charity or to a friend who is raising money for Komen - mainly because I admire them for going for it, but I refuse to purchase even one pink ribbon thing. I go out of my way NOT to.

Did you click on the link to the winner (me) of last year's How Low will Komen Go contest?

Jingle Jugs for Life aka The Trophy Rack You've Always Wanted. They gave Komen $50,000 last year. From their own site:

What is it with Jingle Jugs for Life?

Identical in appearance to the original Jingle Jugs, Jingle Jugs for Life contain a blank recordable chip that allows the user to customize the Jugs by recording any song or message, as many times over, as desired. Jingle Jugs for Life also come embedded with a brief breast cancer awareness message as a portion of the proceeds of each sale is being donated to your local breast cancer awareness organization.

"your local breast cancer awareness organization?" WTF is that? Where does it go? What do they do with the money? If you are going to buy pink, please at least have a clue where they money is going.

And how much money exactly is Yoplait making off of their campaign? A whole heck of a lot more than they've donated.

From the San Francisco Business Times - Daniel Levine:

Consider 3M Post-It notes, which last year launched a campaign to help raise awareness of special Post-It notes featuring pink ribbons. Part of the proceeds from the sales would go to the cancer research and treatment center City of Hope in Los Angeles. The campaign, which featured the construction of a 70-foot tall pink ribbon made out of 75,000 Post-It notes in New York's Time Square, was a great success: Sales exceeded expectations by 80 percent and raised $300,000 for City of Hope. 3M, however, spent $500,000 on the campaign, according to PR Week.

Then there's Yoplait with its "Save Lids to Save Lives" campaign. The company gives 10 cents to the Susan G. Komen Breast Cancer Foundation for every lid consumers mail in, with a guaranteed minimum of $500,000 and a maximum donation of $1.5 million.

Sounds good, but consider that it costs 37 cents to mail a lid that will raise 10 cents for the foundation. Brenner notes that if someone decided to eat Yoplait three times a day for every day of the four-month campaign, they would end up raising $36 for the cause.

"Not only is it easier to write a check," Brenner said, "it would be better for your health."

I don't know, the LLS doesn't market like Komen does. But the LLS actually funds research, gives money to help patients with expenses and co-pays, raises awareness, and has a site that has a forum for people to find support. When I was paying $11 a day (it's $15 a day now) for parking at MD Anderson, the LLS gave me $500 back. That seems so small, but meant so much to me. I also found a place for solace, advice and support while I was going through treatment. They now help people with prescription/co-pay expenses. Actual PEOPLE with cancer. Their Team in Training campaign has raised nearly a BILLION dollars without spending thousands on marketing like Komen does.

I think that Komen should put less emphasis on awareness. They've done a great job there; if you aren't aware about breast cancer/mammograms then you must have been living in a cave for the past 10 years.

You want to help? I'm sure you know at least ONE person with breast cancer. Buy them dinner. Get groceries for them. Pay for a prescription. Babysit. Run errands for them. Buy them a massage. Pay a utility bill for them. Trust me, the money will be more appreciated by that one person than some overbloated, bureaucratic marketing machine.

I ask those of you who wonder what Komen should be doing, please read this link.

Some great links on the subject:

Cara has some Komen rage!

From The Stupid Cancer Blog

I read where a patient got an email that said, "Happy Breast Cancer Awareness Month." Um, jiggafuckwhat? It was pointed out that October is also Domestic Violence Awareness Month. How about a Happy DVAM email?

I think Jeanne, Amorette, The Cheeky Librarian and I all should take the month of October off and spend it in Hawaii!

From Jeanne over at Assertive Patient. We should all reflect on this quote and figure out what our priorities are:

October 1: The Quote of the Day

"I had the misfortune to be diagnosed last October. It was the perfect storm of fear, pain, and massive irritation: pink cocktails on airline flight, pink-jacketed teddy bears on sale at Macy's, designer pink-ribbon pins, etcetera, ad nauseam.

It felt as if people were having a party at my expense, and making money at the door"--Megan

BREAST CANCER: It's a disease, not a marketing opportunity.

Hawktober

Yuck. It's October and the stores are all vomiting pink again. The awesome Jeanne at Assertive Patient has made up a bunch of stickers. I wonder if they would arrest you if you posted these stickers on the pink displays of doo dads. She's also having a 2nd annual contest for How Low Will Komen Go? So submit your entries if you see or know of something "pink" that horrifies you. (e.g. last year's winner Jingle Juggs)

The stickers say:

BREAST CANCER: It's a disease,

www.assertivepatient.com

I started this new med for the fibromyalgia and it makes me wake up drunk off my butt. I'm not digging it, but my doc said to give it a few more days. It makes me feel horrible, but I hate it because I can't drive Zoe to school and my mom has to wake up early.

No test results back on the blood clot. I was having some breathing problems last night and felt like I was having hallucinations about riding in an ambulance and lizards crawling on my legs.

Not much else is going on other than lots of doctor's visits, watching tv and homework. Zoe is now one of the goalies for her team. I love to go to her practices and games because it's nice to visit with the other moms.

One of them gave me a website to help Zoester with her spelling words. She keeps getting 70's on her tests. The site lets you input the weekly spelling list and then you can test them, teach them or let the child play games with the words. It's really pretty cool.

I can do this. Zoe's home and it's time to check the homework for tonight.

I don't have any assignments, but I'm feeling kind of lonely. Call a friend. They might need to hear from you.

Does Not Equate

Fibromyalgia + possible blood clot in neck/chest = latest guess at diagnosis.

Although I just love to hear from the receptionist that, "Fibromyalgia is the bullshit diagnosis that they give you when they don't know what the hell is wrong with you."

Although within a few minutes on the Googlizzle, I found there are links between low magnesium (which I have a constant state of) and the Frogomyalgia.

The endoscopy biopsies were all benign. Yay for little things. No graft vs. host there. But they think I may have some gut infection and have to have this really gross sounding test next week. Something about gastric evacuating. I don't even want to look it up.

Today they did a "doppler" ultrasound on my "armpins" neck and chest to look at the blood clots that showed up on my CAT scans last week. I asked the tech if she thought it looked ok, and she said she had to show it to the doctor. Afterwards, she said, well I can't say one way or another, but I think it's a good sign that after reviewing your ultrasound, he didn't check you immediately into the ER.

Who knows. I'm ready to get high, watch some TV and go to sleep. After I watch "JETMAN" on National Geographic channel.

I can do this. I'm going to have my gastric guts evacuated and further gross myself out.

Your assignment today is to tell me your funniest political joke you've heard so far. I don't care if it's PC or not, or liberal or conservative, I just want to laugh after these past two weeks.

Oh. Speaking of two weeks, I've actually lost 17 lbs in 2 weeks. Yay. Not.

Always for my baby

For Zoe and her new (old) found appreciation for the Beatles. We used to listen to them all the time when she was a baby. Now she likes the soundtrack to Across the Universe.

Sure Thing

I swear that hell is a never ending cycle of paperwork.

High Risk Pool Insurance Application - 32 pages. Confusing. No wonder people hire attorneys to help with all of this stuff.

MD Anderson lost my financial aid application for the third year in a row. I even hand delivered it this year in June before I went to Seattle. Now I have to re-do it. It originally took me two weeks to fill it out.

My sweet mom delivered a request to the Social Security office to make an exception for me to have a special application period to apply for Medicaid. There were affidavits in there written by Sis #1 (an attorney, btw) She also wrote up a great case (as I was giving mis-information that lead to a mistake in my enrollment). Instead of keeping my Medicare card when I got it (Jan), I returned it because the SS office told me that it would be ok to reapply when my Cobra insurance runs out (October 10). Apparently that's not the case. I can apply on Jan 1 for it to be effective July 1st. So what's up with that if I get sick? No insurance?

I'm trying not to stress, but it's clearly making me feel ill. I can barely stay awake when I take my meds, how on early am I supposed to stay up and fill all this crap out? I mean I can fall right asleep after finishing a 4 shot Sixbucks Iced Latte.

I think this week, I'm going to make it my job to get all this crap done quickly. I'm feeling so lousy and now I have weekly doctor's appointments. Some times 2-3 a week. I'm going to have more referrals to immunologists and rhumatologists. I also need a new endocrinologist. But since I'm about to lose my insurance, it would be dumb to start with one doctor and then have to switch because of stupid medical issues.

I know I'm now officially depressed. I'm still taking the meds they gave me, but it's getting so overwhelming. I think it's the constant pain and frustration of dealing with all these doctors. I have an appt with a psych doc on the 25th, although in the past all she wants to ask about is my stupid love life - or lack thereof.

I have to say, I miss Tim fiercely. We rarely talk and when we do, it's just "cordial." He has just completely lost any kind of romantic feelings. I mean not just for me, but he says he can't even imagine having any kind of relationship with anyone. He's so stressed, that he can't even remember what that was like before. It just feels so awful to not have him love me anymore. He was the most romantic, awesome boyfriend. So thoughtful and sweet and funny. It breaks my heart to know that he has lost a big part of who he is. To know that he doesn't think about me as I do him. I can barely bring myself to talk to him. I have friends and family here, but it's just not the same. I feel really alone even though I know I'm not.

I think back about how much fun we had. And how I used to not have pain all the time. That I enjoyed going outside and doing things. I love Tim and I love Seattle. I felt hopeful there. Perhaps it is just the heat here in San Antonio. I think I get the kind of depression during the summer like those up North get during the winter. Except we've had hot weather since February and it will surely last until October or November.

I can do this. I just wish my life were different right now. I'm glad to be alive, but I wish I weren't as miserable. I can't ever remember feeling this ... well sad... before. To feel so lonely and isolated. I can't even walk 12 feet without losing my breath. I can't bend over to pick stuff off the ground. I can barely sit up enough to get out of bed. And I can't get to sleep at night because of the pain. I feel 100 years old. I'm so sick of this being in my life. I know there are people way worse off than I am, but I hate feeling so awful. I hate that this is how my life is right now.

Can you take a vacation from your life? Like "Wondertwin Powers - ACTIVATE?"

Your assignment today is to go for a walk. A simple walk is unbearable to my right now. I want to live vicariously through others today. To encourage you to move. I get so much joy from watching my daughter play soccer. She played 3 quarters yesterday - two as goalie. She was AWESOME. I think she stopped about 6 goals. Never played goalie before. So much energy. It nearly made me cry that I can't be that anymore.

Ok. Enough whinese for now. Move it!

The scoper part 2

Yesterday I got up at the crack of ass to be at the clinic at 6:30. I had even confirmed the appointment the day before. So Dad drives me over and they have no record of it. I was super grouchy!

I then call the office and they rescheduled me for today at 7:30. I show up at the office and again, they have no record of an appointment for me. Turns out they have the wrong area code for my phone. She swore she tried to call me three times. But, thank goodness, they worked me in.

Looks like there is a possibility that I have graft-vs-host in my throat. He did 4 biopsies and I should get results in a few weeks.

Got other test results from MD Anderson yesterday. I have gvh of my skin, but not of my muscles. There is a possibility that I now have arthritis from some strange reaction of all the infections I had on my immune system. Lovely. Back on steroids. Bumped up to 16mg a day. Swollen face, here I come. So not cute.

Still in great amounts of pain and all I feel like doing is sleeping. In an ok mood, but am tired of feeling craptastic. It really gets me discouraged to not be able to move. I'm at the point where I can't roll over in bed because it hurts too much.

Zoe is doing great. Way too much homework though. It's hard to get it all done some days. But her little cousin is here and they are just cute as heck - like sisters!

I can do this. I need to eat, but can't swallow. Soup, here I come.

Your assignment today is to pray and send good vibes to the folks of Houston and the Gulf Coast. It is just a terrible mess.

I miss Seattle and my Seattle people!

The scoper

I have yet another endoscopy tomorrow. At 6:30 A. FREAKING M.

Not too freaked about the scope because I've had like 5 or so, but dread getting up that early!!!

I am not doing very well. I don't even want to talk about it because it's pretty boring to me. And I'm sure it's boring to you all as well.

I miss Houston, but am glad I'm not there rightaboutnow. It is really sad to see all the pictures. Many of my friends have damage to their homes, but at least they are safe. The power outages are just frightening.

I can do this. Just because I can.

This Day has Sucked

Dr. Appt in San Antonio with my transplant doc, Dr. B.

He seems to think that I need back on the steroids (16mg), another catscan of my neck and one of my chest, an endoscopy, two psychiatric visits, aracept, cell cept and a weekly follow up.

So glad my insurance runs out in a month and that my current insurer won't pay all of these events; so I'm going to have a major out of pocket expense for part of these.

If I don't accept his recommendations, I can a) move to Houston or b) find another doctor in SA (which he says there aren't any.) I'm sorry, but I just feel totally fucked.

Everything has been attributed to steroids for over two years now. I had this neck pain *while* on steroids. I've been off of them for over a month, and it's all the same. Dr. Q at MD Anderson said he would try a few other things before putting me back on steroids.

I just don't even want to talk about this anymore. Nearly 9 hours at the hospital. I am frustrated and defeated. He says I'm depressed. Probably. But I can tell you right now that I'm depressed from being in constant pain. The rest of my life has been fairly cool.

I can do this. Even though I feel near death.

Your assignment today is to pray or send good vibes to the people of the Gulf Coast. It's looking kind of eerie. I hope that our power doesn't go out because apparently we are going to get rain and winds.

Tim's now too busy to be my sweetie anymore (don't want to talk about it). But I do miss Seattle. I wish there was a way to figure out how to move there for good. I adore that part of the country. So does Zoester.

Is it Wednesday

Just when I think I can't be in any more pain.

I am.

I can barely walk. I'm miserable even with painkillers. Sleep is the only thing that makes it go away. I feel like my body is shutting down.

I hate this. I want to enjoy life. Not whinese my way through it.

Sluggy Bear

I'm too tired to write much.

I'm back in San Antonio. But here is a recap from my Houston visit.

No diagnosis on the neck swelling/pain. Cat scan was normal reading. They mostly concentrated on getting rid of the bronchitis and why I keep having fevers. Had a chest x-ray - all clear (yay)

Had some blood work done. All good, low magnesium, low immunosuppressant level (no bueno)

Met with Dr. Q, my MDA transplant doctor. Tells me that I need to up my magnesium and my tacro (immunosuppressant). I got a rash the day before my appointment. They did a skin biopsy (results not ready yet) to see if it is graft vs. host disease. I got a few stitches, but it wasn't really painful.

Dr. Q thinks that because I stopped the steroids while my tacro level was so low (since Feb, but hey... they didn't tell me to take more) that my body may be overwhelmed with graft vs. host issues.

He also got some blood tests to check some muscle level to see if perhaps I have gvh in my muscles, which would explain the extreme shortness of breath and the muscle pain. He also said that I really do need to find an oncologist in San Antonio, and a primary care physician. These might be tricky as I'm about to lose my insurance and have some issues with Medicare (missed some dang deadline - long story). He also told me that Dr. B at the transplant clinic should be my primary transplant doctor and that I should only go to MDA for checkups. This is not sitting well with me as every time I see Dr. B or anyone else at Methodist I end up with some big out of pocket expenses.

I'm pretty frustrated with all of this. I still feel terrible and am living on vicodin. I'm try to be more positive about this and move more, but I feel like my muscles are on fire. I'm just a mess. Truly.

Zoe is great. She's been so sweet to me. I missed her so much and am trying so hard to feel better so that I can do more things with her. Lots of school, soccer, and girl scout activities coming up that I need to do.

Oh well. I can do this. I have my family and their love.

Your assignment today is to start eating healthy. Be good to yourself. Get a massage. Take a bath. Hug someone.

P.S. Happy belated birthday to my cousin Rebecca. She's my godmother and is super cool and awesome!!

Yup, She's a Badass

I think the chicas in my family are just a bunch of badasses!

Sis #2 got her blackbelt - woo!

(her arm)

She says,

"two years training

25 lbs lighter

BLACK BELT BABY!!!!"

She's awesome. I'm so proud of her. We had a sort-of surprise party dinner for her Friday night. She had no idea we'd be there, but Mom, Dad, Zoe, Sis #1 and my niece and I were all there. The look of surprise on her face was priceless. She kicked butt - I never doubted she could do it. Sis #2 ROCKS IT!!

A Call From the Bird Talker

For Zoe:

Zoe called me up and was like, "Mom! Listen to this." Then she proceeded to Arm Pit Fart for about 30 seconds. She found it entirely hilarious.

She's totally my child.

I remember she was little when she saw something on tv that said if you put spaghetti in your armpit (although then she called them armpins) that you could make a farting noise. She totally tried it too one night. What a mess.

I have 3 doctor appointments tomorrow. Nine, 9:30 and 1:30. I emailed them today and said that I'm still having low grade fevers. I am just losing faith that they can figure out what's wrong with me.

I don't even want to think about the insurance mess I'm fixin to be in. Sis #1 is trying to help me figure it all out, so I'm not going to worry about it.

I can do this. It's been a long week of missing my Zoester.

Your assignment today is to try to do something immature and childish - like armpit fart. Or do a cartwheel. Play with Play Doh or squirt a water gun. Zoe just made me crack up tonight. I want to see that squeezer so bad.

Well Hell

My fever is back. I'm still hacking. The antibiotics are making me nauseated. Zoe is missing me like crazy and vice versa.

For Zoe - one of our favorite songs that I'd love if Allison S could sing a video (pretty please):

Will this ever end? Which way? Dying or getting better?

I feel like flipping a fucking coin or checking with my magic 8 ball. It probably would tell me more than the doctors can.

I can do this. Even though I don't feel like I can anymore.

Your assignment today is to wish Sis #2 some good mojo. Saturday she is going for her blackbelt in Tae Quan Do. She's a badass and I love her!!

I really miss Zoe. It hurts.

For someone else. You know who you are.

In Houston Hopefully Gustav Won't Be!

I'm still in Houston at Sis #1's casa. I'm still coughing and it looks infected when I cough it up (can you say hairball?)

I have to stay here at least until Thursday or Friday, but am hoping we don't get rainfall or any big time wind from the storm that is headed in the Gulf.

I just feel really overwhelmed and exhausted.

I am now on 3 antibiotics. Yay for superbugs. The prelim catscan of my head & neck look ok. Dr. Q, my MDA transplant doc, says so far it looks clear, but they will need to get the official reading. I was hoping for just some inflammation or sprained neck or something because the pain is just awful. I am pretty much living on one Vicodin a day. I try to skip as often as I can as I don't want them to lose their effectiveness.

I watched Across the Universe, which is a movie that has Beatles music in it. I thought it was pretty amazing.

Again, too tired to write much.

I can do this. But I'm needing some Zzzzzz's.

Your assignment today is to prepare a disaster readiness plan. Have a meetup location for your family. Have a working flashlight and set aside some new batteries that will make it work. Get all the gear you would need in case of an emergency and put it all in one place.

Love love

I've been attacked by vampires

Went to the MD Anderson ER yesterday.

More bloodwork
Another chest x-ray (clear)
More antibiotics
An order of a catscan of my head and neck
An order to follow up with my transplant clinic.

I woke up coughing my head off. Trying to figure out how to make my ct appointment.

Missing Zoe like nutso!!!

ok. i can do this if i don't die of frustration first. Love love

Send it in a Certified Letter

Dear Ms. Debutaunt,

We have been unable to establish and maintain a satisfactory physician-patient relationship for your medical care. Therefore, we find it necessary to inform you that we will no longer be providing professional care to you.

If you are in need of emergency services in the next 30 days, we will be available*. During this time, we urge you to call your local medical society or your insurance company and select a doctor of your choice for your medical needs. We will make your records available to your new physician upon receiving a written request, which I am enclosing for your convenience. Thank you.

Sincerely,

Lawrence A. Alder, M.D.

DEBU_TRANSLATION:

Dear Deb,

Because I dated you and dumped you for this crazy bitch, she had a shit fit and said that I couldn't come be one of your assistant's patients anymore. It doesn't matter that you are desperately sick, I am such a fuckwad that I don't have the balls to stand up to this bitch girlfriend of mine. I don't have the integrity to do my job as a physician and help you when you are truly in need.

Insincerely,

Dr. Larry Asshole

Well you know what? Fuck you, dude! You and that crazy chick deserve each other.

My San Antonio transplant doc also contacted me today. I understand where he is coming from, but what he is asking isn't always feasible. He told me that I need to have all of my care at MD Anderson. Ok. So what if I'm incredibly sick and need to go to the ER? I'll take my invisible jet to Houston and go to the docs there Wonder Woman style. He recommended that I go to the MD Anderson ER ASAP. I phoned my Houston clinic and they agreed. They said that if I continue to feel bad and still have fever that I should come in. I'm going to try to go tomorrow. Today is over.

Today I feel lethargic and really really sore. My neck is killing me. I'm just very dejected and feel like no one will ever figure out what is wrong. I feel worse than I did before when I had cancer. I have no life because I am so tired and in pain, it makes doing the most simple things so difficult. I'm missing Seattle and Tim way way alot. I read through some old blog posts and saw that the first two times we were together (in SA and my first trip to WA with Zoe) I felt healthy and great. How did that go so wrong?

I can do this. I just am reaching out for some help.

Your assignment today is to do something nice for someone. Love love.

Um. Hate the ER

Sorry, a bit TMI. I have a Urinary Tract Infection. 101.5 fever. Bronchitis. No diagnosis on the painful, swollen neck. I hate the ER.

Ok. So my friend, the doc I dated a little, acted like an asshole. I forgot my phone in the car otherwise I would have posted his text message here.

A week ago I phoned him to see if it would be ok to set an appointment with one of his Physician Assistants. He said, "Sure, no problem. Call the office and set one up. If they can't get you in early enough, call me back." Cool. Thursday doctor's appointment and then labs and the script for a chest x-ray and a catscan of my neck.

So Sunday I sent him a text asking when their labs are usually ready. I couldn't do the catscan until I had the results. I get this shitty shitty text back that basically says, "I am in love with my girlfriend (name left out) and we live together and are going to get married. Because of our past, I think it would be best if you found another practice. Lab results in a.m."

Jiggafuckwhat???

Who the hell does he think he is??????

a) we barely dated. We had a friendship and not a relationship!! He dumped me for his crazy, loony girlfriend and I was all good with that. He's still not divorced from his crazy first wife. Can you say, run Forrest, run from that relationship.

b) I adore adore adore my debu_sweetie Tim. Nuff said.

c) HE was the one who told me to come in - very casual and didn't sound like he was concerned or that it was a big deal.

d) He has issues. Major major issues. More than Brittney Spears issues, no lie. He's a good doctor, but a wackadoodle.

e) He's not Brad Pitt. He's not even Brad Pitt's limo driver's ugly second cousin. He's not hideous, but he's ordinary. Tim is adorable! No comparison.

So. So. I basically reply and say I'm soooooo not interested and that I'm in love with Tim. That I need a doctor, not a boyfriend.

No answer.

Then I text that I really really need my test results. No answer. Call his office. Closed for 2 hours for lunch. Finally get through at 2:15 and she says they are in, and she will give the nurse a message.

Ok. So I'm already really pissed and I feel like caca. I swoop up my girl, Zoe, at school and drive to his office. I come in and the receptionist tells me that my labs are not in my file. I told her that they were in apparently and that I'll wait to get them.

She makes it sound like it's Grand Central Station and that they hadn't even reviewed the results... "Um... We DO have other patients." No shit, Sherlock. I'm standing in front of her, wheezing and gasping for breath, sweating with fever. Finally after about 25 minutes, I get the results. No report or notes. Whatever. Fuck them. I notice a few weird things on some thyroid tests, but I don't understand them. Whatever. Later.

I then call my San Antonio transplant clinic. I tell the nurse the situation and that I feel pretty awful. She says she will find out what I should do. She calls back and tells me that I haven't been in their office since April and that I need to come in when I'm well and also when I'm sick. That I can't just call them up when I'm "desperate." She tells me that my doctor said for me to "Go to Houston and see my MDA doctor."

How does this make sense? I don't go in for checkups that often. I think I'm every six months or so. Why would I go to TWO hospitals to get checkups and tests??? Not to mention, I don't go to my SA doctor here in town that often because I always end up with an out of pocket bill that seems like bullshit. I don't have financial aid there, they don't offer financial aid here in San Antonio, but my out of pocket costs at MD Anderson are minimal and my meds are affordable there.

So I call my awesome friend, Michelle, who is a doctor at MD Anderson. She also advises me to go to Houston if I can. I know I'll get the best treatment. They know me. They know my history and they also know how dangerous a long fever and congestion can be. Bonus - competency and knowledge.

I talk to my sister and mom. They both agree that I'm in no shape to travel right now. You know, since I don't have a private jet or chauffeur at my disposal. Sis #1 recommends that I just get to the ER at my local hospital - at least they have some records on me and they have a transplant department.

Six hours. $100 copay. Possible post-visit costs. Four chest x-rays. An IV and 2 blood draws (one that gushed onto the floor). An EKG. At least I know I don't have pneumonia, found the UTI and I got a script for Levaquin (antibiotic). The only good thing I have to say for the visit is that the staff is remarkably nice. And they seemed really thorough and competent. Thanks for that. It was crowded and busy. They could have been a-holes.

They also tell me that the transplant doctor on call said for me to follow up with them within 48 hours. Um. I tried to make an appointment for this week and was told to go to Houston. I should make them reimburse me the $100.

I'm frustrated. I need my Houston doctors. I can't afford to live in Houston. All I could think of on the way home is that I'm grateful that so far they haven't found anything serious. But for a minute, when they told me they needed additional x-rays, I started getting scared and had flashes of something being serious and then getting the worst treatment ever when my insurance runs out and I have to go on Medicare in October.

I can do this. I just want to start feeling less pain.

No assignment tonight. It's after 3am and I'm just plum out of steam.

P.S. Zoe needs me. I love that little girl like no tomorrow. She was fast asleep, but as soon as I walked into our hallway at 2:30 a.m. she said, "Mommy?" I went in her room and squeezed her up a little and re-tucked her back in. She's precious. Magic. Sometimes I think it is her love for me that keeps my heart beating. That keeps me from giving up. I think that's how kids are supposed to make you feel; when they aren't driving you bonkers. Love love.

No Whammies!

101.5

That's not a radio station, but what my temperature has been.

One minute I'm burning up and the next, I'm freezing.

I'm just a hot mess! Although I have to say it's kind of cool to have hair long enough to put in a ponytail. Albeit my pony is only about 2.5 inches long.

One bright spot is that the doc's office said that since the last time I was there in Feb, I've lost 13lbs.

I wish I could figure out how to get to Houston. I'd go in a minute, but then my mom and dad would have to take care of Zoe. Zoe gets really anxious when they do. I am thinking about maybe asking one of her friends to drive her to school or set up playdates so that she is not as upset about the prospect of me leaving town.

This is what my neck looks like sans the fat on the sides of his face. And the line that says "Here" is more where it is located. Although I have to say I have a much longer neck than Jon L does, so it's maybe a little higher. And my doc did say it's higher than a normal thyroid issue would be, but that's kindasorta what it looks like.

I just can't imagine that all of my symptoms are related to steroid tapering.

Natalie Dee always knows just what to say:

I also like this one since they say one in three children born in the year 2000 will get diabetes:

I can do this. I may be down, but I won't ever be out. (and what the hell does that really mean?)

Your assignment today is to tell me your favorite breakfast foods.

P.S. I'm missing my debu_sweetie. I can't really talk on the phone so it's been some pretty short convos lately.

Meouchouch Part Dos

Had a bunch of blood tests done. Now I have to wait. Never fun. Ranks up there with the no-diagnosis issues.

Most likely *not* thyroid, lymphoma or goiter as the swelling is "too high" to be one of those and it isn't hard (it is a little to me) although it is noticeable. She said there could be some steroid-related issue. I have now been off steroids for two weeks.

I may have allergies, but my Zertec didn't do squat. I have a really hacky cough and now have totally lost my voice. I also have a low grade fever and a rash again. And I don't feel like eating anything as it's so hard to swallow. The painkillers I took haven't helped. I feel like I'm having a hard time breathing. My collar bone hurts and is swollen. One of the meds that the pain management group gave me is an anti-inflammatory, the other is a pain killer. But I am pretty sure if I want to sleep, it's going to take a vicodin to do it.

When my labs are done (next week) I will get a catscan of my neck and a chest x-ray. They need to check my kidney function in order to give me the contrast meds if I need them. She said a catscan is probably over cautious but she said an x-ray or ultrasound wouldn't catch some of the things they need to check.

The PA will be sending my labs/catscan to my docs at MD Anderson also. She's worried and wants me to see my docs there sooner than later. I also will have a doctor appointment with my friend since he's more experienced with oncology than my doctor today is.

I really am hoping that they figure out what is going on instead of yet another round of steroid-related causes. I totally want to stay off of them, but if it's steroid-related, they may recommend that I start taking them again.

I'm still trying not to worry, but I really feel pretty awful. I'm trying to stay positive and in a good mood, but it is really hard when you feel so punk. I feel like I just want a big hug. Sometimes when you feel this terrible, going to sleep is the easiest thing to make the pain go away.

My Zoe is still awesome. We are now reading The Great Brain which was a family favorite. All seven kids read that series and the book we are reading from is stained, yellowed, and the spine is taped together.

I can do this. My kiddo makes me smile.

Your assignment today is to work on organizing your paperwork. It's back to school time. I used to love to buy new school supplies and get everything organized. Not that it would necessarily last, but it was always kind of fun to start off like that.

Meyouchouch

I have a doctor's appointment tomorrow. I am now two weeks off of steroids, but I feel absolutely horrible and have for about a week.

Something is just wrong with me. I wish someone could figure it out. Now my neck started swelling this week. I'm going to see my friend, the internist, here in San Antonio. Kind of strange because we dated a little before I met Tim. But I'll be seeing his PA, and that's fine. He's going to check my files, etc. Regardless of our past, he's a great doctor.

I'm not hungry whatsoever, I am hoarse and it hurts to swallow. I'm hoping this is just swollen glands or a minor infection or something, but it's certainly creepy. And definitely painful.

I sleep all the time. Even major amounts of coffee aren't helping.

I'm just not going to worry. It doesn't help anyway. Although I have to say that Googling swollen neck presents some really disgusting results. And some pretty serious diagnosis's. I'm not sure if I spelled that right, but I'm too lazy to look right now.

Zoe's great. I'm in a good mood, but just lethargic and in pain.

I'm going to go eat some soup.

I can do this. No matter what.

Your assignment today is to send good thoughts, pray, or whatever for a good outcome tomorrow and that it's not something serious.

School is a'startin'

Home in San Antonio. I still have a ton to unpack, but we've been running errands and just relaxing and reading books.

My long summer seemed way too short.

I can do this. I love school supplies.

I forgot just how much I love Whitney Houston. I think some of her stuff will have to find its way onto my iPod.

Date Night with the Z

Shopped for school uniform shorts - check

Saw Sisterhood of the Traveling Pants 2 - check

[aside]
(uh. I'm glad that Z already forgot this one scene ... because I didn't want to have to explain 'broken condom' to her - I actually was like "OMG Noooooooo!!!!!!!" - when that scene came up. No, no, no nude or sex scene, just a scene "after" & then a kind of funny pregnancy scare montage. We were going to see Wall-E, and I REALLY wanted to see that, but she saw the picture of America Ferrera and the Gilmore Girls chick and then she was like... "Mommmmm. No, I want to go see that!!" I should soooo read PARENT reviews first (it's PG-13) - not terribly bad, but gosh that was kind of embarrassing having to say a few times, "I'll explain it later." Let's hope she doesn't bring it up again. I might just have to break out some knowledge on her far earlier than I expected - ug!!).

Pedicure - check. I'll take pictures of her big toes tomorrow as she got flowers painted on her toes.

Sushi - check. The picture of Zoe in this crazy hat. I don't know why, but I just dig it on her even though it did not match a thing she was wearing. Probably because she was so adamant about wearing it.

Bookstore - check. I got The Tao of Willie and this (ducks head in shame) Nicolas Sparks book. I always want to read them, but usually am like.. Ug! Sooooo hokey! Zoe got some Junie B. Jones books. We've been reading every night now and it makes her go to sleep so soundly.

Now, I'm headed off to bed. Wondering if my Texans won and sad about the death of Bernie Mac and the stabbing of an American at the Olympics. I saw Bernie interviewed a few times and he always seemed so smart and quick witted - just natural and it didn't seem like a bit or forced. I'd link the stories, but I'm too tired and lazy tonight.

I can do this. Even through the laze.

Your assignment tonight is to tell me a memory (if you have any) of the Olympics. I have watched nearly all of them since I was little, but my first real memories were of Peggy Fleming/Dorothy Hamill and Bruce Jenner. Then of Nadia Comaneci, Carl Lewis, Michael Johnson, Janet Evans - who was my next-door neighbor for a while in Austin, Mary Lou, and Kristi Yamaguchi. There are so many images in my head and I love to re-watch the highlights.

Missing my Seattle Sweetie as usual.

Needle. In My Head.

Late night. Didn't mean to and I'm really tired, but I'm testing new meds and didn't want to mix them with anything. So I'm dull and awake.

Reader's Digest Version of my Pain Management appointment:

It's general muscle pain. Cause unknown.

Good news is, the doc didn't think it is skeletal because of whatever testy-type stuff pushing on my muscles and head they did. It was very scientific sounding, but the last time... again... the whole they didn't believe me time, I had another herniated disk. I'm going to try to have faith and patience on this one.

Chairs in the pain management clinic are highly uncomfortable, btw.

I got a prescription for 2 new drugs, both of which could make me dizzy or drowsy. That bring the count of those possible side effects to about 80% of all the meds I take. And you wonder why I feel craptastic?

So, they talked about my 3 herniated disks. I told them that so far, I can deal with that pain. I injured 2 of them several years ago, and refuse to stick needles in them or have surgery.

But then, why I agreed to this I have no idea, the doc decided to do this whole shot regime. It's not acupuncture, but they shot this stuff in my shoulder and neck muscles. And where I have this horrible stabbing head pain (again, so medical sounding) at a spot behind my left ear, she shot this steroid/numbing stuff... yeah. all the way INTO my skull. I tried to do some meditative breathing (all those natural childbirth classes paid off), but I still got tears in my eyes because it hurt so much.

So for about 5 hours I had half a numb head - like how your face feels when you get Novocaine. Totally creepy and very very wackadoodle feeling.

I got a prescription for some physical therapy, but will have to find one in San Antonio as commuting to Houston is just not an option.

So. I'm going to try to get some rest. It's hard to have patience with the kids when they act squirrelly and I'm feeling so punk, but I love being here. I miss them so much. I love hearing Zoe giggle like she does when she's here. Although, man, she and her boy cousin fight like the dickens. My kiddos *sigh.*

Tonight we started reading a book about 100 dresses. Zoe knew that I was still in pain so she was rubbing my neck. She is totally my snuggle bunny. I feel strangely calm.

I can do this. It's football season and I'm a TEXANS fan!

Your assignment today is to take some time to watch the Olympics. I have always loved the Olympics since I was a little kid. I can't imagine how exciting it would be to actually be there to watch them because it's just so thrilling to watch them on tv. I love watching them with Zoe. She takes after Sis #1 and is a big sports fan! So take or make some time to watch - multi-task if you have to - watch and do some arm curls or stretch. But enjoy one of the more amazing sporting events that we have.

Missing my debu_sweetie tonight. He's peaches.

Be Careful What You Wish For

Postponed

My appointment at the Pain Management clinic has been postponed until Thursday afternoon because of the possibility of Tropical Storm Edouard heading this way (flooding/rain is what we'd get here in Houston most likely).

Zoe starts school on the 18th. I still need to purchase her uniforms or pray that I will be allowed to raid the school's closet of used uniforms. I mean, who wants to pay $50 for a jumper they wear once a week. I'd buy them online, but I don't know if she has stuff that still fits her. She got taller, but thinned out a lot from all the swimming.

I'm glad the kids are feeling better. Zoe was just so cute last night as we read Ramona Quimby, Age 8 for her summer reading reports.

Finishing up this post later on. I made a ginourmous pot of spaghetti (it was GREAT) and then we ate strawberries. I took some medrol (steroid) yesterday and a Vicodin this afternoon so I feel much better, but still am pretty achy. I'm taking a break from the News as they are getting a little out of control with the storm drama already.

Tracking Tropical Storm Eduardo
Eduardo Eminent
Storm Central
Storm Supplies Flying off the Shelves

I know storms are deadly and dangerous, but I don't think I need to watch six straight hours of coverage. Some stations don't even break for commercial.

Zoe's snugged up asleep next to me. She's so pretty. We both miss Seattle and she misses her big sis there. They were birds of a feather.

I am going to spend the day in my jammies and watch all the rain.

I can do this. I'm in far too much pain, but the jammies and snuggles make it cozy.

Your assignment today is to take at least 5-10 minutes to enjoy something you like. I had some warm hazelnut cinnamon coffee this morning and I enjoyed just savoring the flavor. It's no where near as good as the coffee my debu_sweetie used to deliver every morning, but for today, it will have to do.

And thank you for all the lovely comments, especially Alyce (yes, my Tim's sweet mom). I was really surprised, but regardless of all the pain, knowing that people are praying and care about you really truly helps lesson the fear and hurt and pain. Knowing all of that gives me such strength. I can and *am* doing this. I love you!

My debu_sweetie is so on my mind. I just truly adore him.

Love is missing someone whenever you're apart, but somehow feeling warm inside because you're close in heart. ~Kay Knudsen

No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth. ~Robert Southey

" I miss you most when I'm sad. I miss you when I'm lonely. But most of all, I miss you when I'm happy."

New Barf-els

I love my Houston friends that were in New Braunfels with us. It was so great to see them all and see their faces again. Their kids are ginourmous and there were some good laughs and lots of fun. I spent a few days in the pool (the shaded part with my big ol' hat) and then a day resting because I started feeling kind of puny.

Sadly though, some nasty bug (we don't know what) felled the majority of the kids there (about 15-20) and some of the other families that were there - the vomiting, nausea, diah of the rear kind of bug. It's so awful to watch a 40 pound little girl throw up so hard. My little niece was crying and vomiting at the same time. It was heart-wrenching.

Sis #1's two kiddos got it. Zoe got it later as we were headed home - we left late Saturday night instead of staying the extra night. Zoe had been complaining about her stomach and no sooner had I stopped to fill up my car with gas, did she start screaming for me and throwing up. Good thing we brought a pot, but I feel bad for whomever will have to empty the garbage at that Shell Station. My poor baby kept crying about how "scared" she was. We took off and fortunately we got home around midnight. Zkat didn't throw up again, but still isn't really up for solid foods. It felt like the longest drive ever.

I decided to cold-turkey my steroids (from 4mg to zero). Since they keep telling me they are the cause of about everything wrong with me, I am trying to manage the side effects. So far, no stomach GVHD issues, but I feel completely awful. I have an appointment with the pain management team at MD Anderson on Tuesday, so I'm not taking any pain meds either. I feel like a complete vegetable. And I have a 101.2 fever.

Upon further internetting, it seems as if I shouldn't do that as it may cause Acute adrenal crisis.

Ok. Too tired to write. My debu_sweetie is just awesome (see his comments on below post).

I can do this. I love Tim more than Sixbucks, Maplewood, or Stir all wrapped in one. More than Zoe loves pizza even.

Your assignment today is to go check out this post at Jeanne's site. A single mom going through some really bad bad cancer treatment could use a spare buck or ten.

I love y'all.

They can't tell you what's wrong with you

But they make a guess anyway.

Steroids. It's steroids. The pain. The nausea. Everything is related to steroids. Funny, they always say that. I'm sorry but I really really disagree. The pain is localized. Last time I told a doc I was in terrible pain, it turned out that *wow* I had herniated 3 discs in my back.

It isn't anything detectable in a blood test, so that's kindasorta good news. At least I think so.

I got 11 prescriptions for $58 too. That was worth the visit as they usually cost about 3x that when I get them in the mail.

They are scheduling an appointment next month for me to see the Pain Management group. I'm assuming that they also try to find the cause of the pain, and if they don't know, how to manage what you've got. I'll try anything. My muscles feel like they are on fire - mostly shoulder and neck pain. It's like whiplash.

The docs didn't seem too concerned about:

The fevers
The painful lymph-nodes (said they weren't swollen - uh, yeah. they are)
The nausea
The fainting (once)
The muscle cramps
The fingers freezing up and "sticking"
The night sweats
The chills
The vein that has become very prominent and spread across my chest
The difficulty in swallowing
The coughing at night and when I eat
The weird way I think I smell (Zoe says, "Like a robot.")

I guess they see so many really really sick people that because I "look great" that I must feel great. I wish I looked as bad as I feel and then maybe someone would really do something.

or

I don't want to take pain meds, but since I haven't for about 4 days now, I'm going to get my drug on like Donkey Kong tonight.

I won't have internet access in New Braunfels, so I'll be away at least until after Sunday.

Ok. Need to pack it all into my car. Thanks for the snappy answers to stoopid questions.

I can do this. I don't know why but I just can.

Your assignment is to find someplace to go swimming and GO. It's just too damn hot to do anything else!

Tim, I love you more than I love sushi. And Sixbucks. More than sushi with a Sixbucks.

For My Enginerds

"Must be nice to not have to work."

Ok, I'm going to go off for a bit here and I might have to curse a little bit.

I hate when people say that to me. "Must be nice not to have to work" or "Why aren't you working yet?"

Look, motherfucker. I didn't win the lottery so yeah, I do *have* to work. But since I still feel like hammered dogshit most every day, I'm not working yet. I collect disability now and I don't feel bad about it. Honestly, I think I kindasorta earned it.

Also, because when you work in an office, assholes come to work with 105 fevers because it's better to be there than call in sick - or at least they think so. A 105 fever would put me down.

And gross, sick fucking people pick their noses, sneeze, snot rocket, don't wash their hands and then touch things I might touch. Did you know that you have strep germs in your nose? A strep infection KILLED a friend of mine in 3 days. Staph could kill me. Pneumonia could kill me. Heck, a bad cold could kill me. Viruses, germs, fungal infections - no bueno. Welcome to my world of OCD-ness. It's self preservation. It's called immunosupressants. And if that makes me a freak of nature, so be it. I'm still fucking here!

I wish you could spend one day in my shoes to feel the pain that I'm feeling. Or the waves of nausea I get when I take all my meds every day. Or the inability to sleep because of pain, neuropathy, or just whathefuckever reason I can't sleep. Or feel so tired that you sleep nearly all day and all night. The fear of relapse - I'm not even going to think about it, but it lurks in my brain.

I am fortunate that I was able to move in with my parents AT AGE 39 because I couldn't afford to live on my own again, which I had been doing for OVER 20 YEARS when I got sick.

But you know what? I'm here. I'm still here.

I never say any of the stuff I'm thinking. I wish I had some cute, funny answer for those questions, but I don't. I just can't explain it all because I'm tired of talking about it. It makes me feel like I'm speaking whinese.

Mostly. The biggest thing. Is that I would trade it all back in .00025 seconds if I could. I'd go back to my boring job reading about toxic waste in a heartbeat if I could. Just to not have to go through what I did; to not have had to put my loved ones through all of this. My daughter was really tired the other night and was crying. She said she wishes we could go back to our old apartment and have things be the way they used to be. Try being strong through that.

I'm not working. It is what it is. I deal with it. I don't like it, but it's not like I really have much choice.

Ok. I have to go to the docs now. I don't want to, but again. No choice.

I can do this. I have you.

For my enginerds. This was funneh!

Your assignment today is to tell me the clever answers I should give to these annoying questions.

P.S. I love you Goobertox!

Tense

Went out to dinner with friends tonight. It was great seeing them. I'm pretty nervous about tomorrow's appointments.

Took some pictures in the car.

Mean face:

Non-mean face:

I want to know what's wrong with me. My neck hurts like a mofo. I even bought this dorky neck massager that you wear around your neck. It's not helping although the heat feels good. I miss Tim. Just the feeling of Tim's hand on my neck made it feel better.

I'm craving fruit.

I don't feel like writing tonight.

Yes, my loves, I really am great-ful

It must be get all sentimental review the archives week here in Debu_ville.

There are many lessons I learned these past five years I've been blogging. Yes, five plus years - started on March 30, 2003. But lately I seem to be falling back into some old patterns, and quite honestly, that is not ok.

It started with an email I sent today that reminded me of that post and about the lesson of being grateful and God's grace:

You are awesome. You have great things in store for you in your life. Storms and sunny weather, but I know your strength. I know your character and integrity and I know that the clouds will eventually lift. I know your love for me.

I know that often I forget to be grateful for what I have. It's so hard to remember God's Grace on me when I am so down or feeling so much pain. But then you get a glimpse of God's love - in your daughter's snuggles, the smell of Zoe's hair and her little hand in mine when she sleeps, a funny joke or a good time with a friend, your other daughter's smile and bright future, a good blog post or a good day's work. Sometimes they are few and far between, but God sends you what you need, or who you need, when you need them.

It's uncanny, but there are at least ten or more people I know I could have sent that email to.

I think I could have written this just last week, yet I wrote it over two years ago; about a month after my transplant.

I've been wallowing. I've been focused on how crappy I have been feeling and the long road ahead of me. I've been sad and let that sadness overwhelm me. I am letting the pain and sleeplessness and frustration impede my goals.

This week I just pray that the doctors don't tell me what I've been fearing - that I possibly have relapsed or have lymphoma or some other type of secondary cancer. I'm ready to finish what I started. Recovering, feeling better, spending time with Zoe, searching for inner peace, volunteering, writing, and trying to figure out which direction God wants me to go.

Worrying does not help anything. But praying for guidance does. It's not like God just sends you an email or you hear some booming voice that tells you, "Debu, go be a teacher." But in my experience it's more of God opening doors for you or putting people or experiences in your life that will lead you in a certain direction. It's more of some calm and resolve about what types of things you need to accomplish. The ability to have some clarity and to make a list, to set goals, and to see what things in your life you should cherish. And the people in your life you should cherish.

I remembered that last night when I got to see Zoe after being apart all summer. Her sleepy body curled up against mine. Feeling her soft little breaths on my arm. Waking up with my niece and nephew and their smiles and energy and hugs. Hearing Tim's voice on the phone and hearing his laugh. And reading the many comments from so many cherished readers and family and friends from that difficult time in my life. I am so grateful for it all. For you all. For my life and my loves and my future.

I don't want to worry about my health. I just pray that I am allowed to continue on. I pray for faith that this isn't all there is to my story.

I can do this. Something great is going to happen.

Your assignment today is to read or re-read that post and the comments and to complete that assignment from those few years ago.

1:20 a to the m

Sleep eludes me.

As if this is something new.

My bird-talker is as sun-tanned as she can be. She was a swimmin', Summer fool. I gave her the longest hugs and smooches when I finally got to her (I showed up earlier than expected to surprise her). Too sweet for words. Um, and I need to take pics - she's HUGE! And gorgeous. Got her hair cut and she looks so grown up to me.

We are snug as a bug here at Sis #1's house, as well it should be. Spent the day with awesome Sis #2 and her three kiddos. Zoe was in Heaven! Sis #2's kids could not be any more adorable. They look like Disney babies. Sis #1's two kiddos are gorgeous too... although they wake up at the crack of ass, which is why I wish I could sleep tonight.

Zoe asked me all about my summer. I told her about my brief visit to Canada (2 minutes), Montana (20 minutes) and driving through Washington and Idaho - seeing mountains and lakes and rivers and gorgeous greenery and flowers. There were so many places we saw that I wish she could have seen with us. I think I could write about it for weeks on end (as of today my NYC weekend adventures - including the Mark Wahlberg story - have still not be finished, though mostly written). I think I was too busy enjoying my precious time with Tim and soaking in the beauty that is Washington to want to spend hours online writing.

I hope that Tim can help me fill in the brain lapse that I get sometime; either it's chemo brain, being 40-something, or remnants of my bout with encephalitis. There were so many cool things that we did. I took notes, but not enough. It's like how I don't like to spend that much time taking photos at events and sightseeing. I'd rather enjoy the view and buy postcards as those photographers are much better at capturing what I see than I am.

I think I was too busy enjoying my visit to think about writing it all down. But I miss my real blogging. I read some archives and I remember how much writing it all down meant to me. I felt more clarity in my life than I do now even when I was going through all the treatment and recovery. It was more gutsy, real writing than anything I've done in a long while. I know I need to practice my craft again (because, yeah, grammar goofs and all, I actually have a B.S. in Humanities - in English Writing & Composition - Go Saint Edward's University!)

I still be skeered about my appointments. I am having a bad feeling for some reason and I just wish it would go away. Too bad I'm out of ativan. It is my temporary Eternal Sunshine of the Spotless Mind wonder drug. I'm hoping my docs won't object to a refill.

Ok. Going to count backwards from 100. Generally it takes me about 7 to 8 times of doing that before I fall asleep. Sucketh.

I can do this. Zoe the Incredible is here.

Your assignment today is to tell me a joke. Preferably a groaner. Tim is the best at these. I want to think about them all when I can't sleep. Please send your many friends this way to leave me jokes as well. Obviously I have a hard time with my sleeps, peeps and I dig the commentage. Gracias. Or as ZoeElvis would say thankyouthankyouverymuch.

Home Safe

After a thoroughly hork-o-riffic, turbulent flight home from Seattle, I made it safely here Friday. I'm headed to Houston today to see my bird-talker and to visit my transplant doctor on Wednesday. I wish I didn't have to go to MD Anderson because we are going on this fun trip for a week in New Braunfels with Sis #1 and everyone else is leaving on Tuesday. Zoe will have to go without me and I pray that I'm ok and won't have to be admitted to the Big House or have to stay extra days for tests or something.

Missing Tim and Seattle like bonkers.

Trying to focus on positive things. I still have this awful neck/lymphnode pain. I snoozed like Sleeping Beauty about 5 or 6 extra hours yesterday. Woke up, honey nut cheerio'd up and then went back to sleep until about 3pm. I'd probably still be sleeping, but I want to get on the road and my neighbor's dogs barked like madmen at about 5:30. On a SUNDAY. *sigh* Thanks.

Last night I went in to get some water and got a great warm Texas welcome from:

perched on the kitchen sink, a solitary giant Texas cockroach.

La cucaracha
You are so damn disgusting
My flip flop killed you

Did I say I'm missing my Tim like bonkers?

I can do this. I am the killer of giant, disgusting bugs.

Your assignment today is to send me some well wishes and good health reports. No lie. I'm kindasortalotsascared.

George

Mildred, the church gossip, and self-appointed monitor of the church's morals, kept sticking her nose in to other people's business. Several members did not approve of her extra-curricular activities, but feared her enough to maintain their silence.

She made a mistake, however, when she accused George, a new member, of being an alcoholic after she saw his old pickup parked in front of the towns only bar one afternoon. She emphatically told George (and several others) that everyone seeing it there would know what he was doing.

George, a man of few words, stared at her for a moment and just turned and walked away. He didn't explain, defend, or deny ... He said nothing.

That evening, George quietly parked his pickup in front of Mildred's house, walked home. and left it there all night.

Worst. Birthday. Ever.

You know your birthday is for crap when you get a call at 4:30am and it was because your ex-husband's telephone accidentally redialed .... twice.

That was the highlight of my day.

I go to MD Anderson (that call clocked in at 6:30am yesterday) on July 30th. I'm broken. I need a'fixin. And a brain transplant. I hope I don't get admitted because I am too exhausted to go inpatient in the Big House.

Tim and I broke up. My fault. I'm so not surprised.

I need Zoe. And someone to come help me pack. I can barely move.

I can do this. Regardless.

(comments are shut off on this one, btw. They are jacked up and have been needing moderation.)

Birthday BBQ

We had our birthday BBQ this afternoon. What FUN!! It was kind of neat to throw a party since I don't really have my own place anymore to host one.

Tim's family came out. They are just so cool and fun. I know it's kind of uncomfortable to meet the "new" girlfriend (not the first time, but you know what I mean) but they always make me feel very welcome. Tim has the cutest nephew, Ayden, age 2. He's so adorable I just wanted to squeeze him. Tim's best friend brought his wife and their gaggle of kids as well. It was great to be around all the chirrins. Makes me miss my Zoester big time, but I know I'll be seeing her in a week.

Tim gave me this cute pink t-shirt from the Kitsap Bluejackets. That's the team he umpired twice. I had such a great time at the games. He had the entire team sign it for me. It's so awesome!!

Zoe's been having a great time, but every summer, towards the end of her visit, she starts to get sad. I think it's a combination of knowing she will be leaving her dad and his family and missing me. She always makes me sing our bedtime songs to her and she tells me over and over that she misses me so much. It's terribly hard to sing to her without wanting to bawl my head off. But I know she adores her dad and has such a great summer in NY (upstate). I just can't wait to see her. She said she's ready to come home and see her cousins. I hope that I feel ok and that I can spend some time with Sis #2 and her family since they aren't going with us to New Braunfels. We're headed there with Sis #1 and her family when Zoe gets back for a week-long trip with about 13 other families. It's now an annual thing and it's just fun as heck!

I'm not sure what they are going to do at MD Anderson. I mostly just hope they don't blow me off and tell me it's just a medication issue or GVH and to deal with it. The pain is often just completely unbearable. Generally I manage through it during the day, but I've had to basically dope myself up to get to sleep. Usually it's some combination of ativan, vicodin, sleeping pills or darvon. BTW, I know which ones not to mix together, but there are times where I wake up just completely lethargic. This is absolutely unacceptable. I can't go through my life doped up.

Ok. I smell like an Elk. Or maybe a robot (as Zoe used to say) so I'm off to shower. I bet I will be posting more once I get home, so no worries. I am having a great time, so I'd rather not spend all of it online.

I can do this. Today was a great great day.

Your assignment today is to tell me about one of your favorite birthday memories.

Fast Postin'

I'm finally back in Seattle after a 3 day baseball trip to Bremerton, WA. Fun. Tim is great. Working on the bbq party for tomorrow.

but...

I'm in extreme pain for some reason. Have a call in to MD Anderson to try to get an appointment when I'm in Houston because I have the following:

Swollen lymph nodes
Extreme fatigue
Major muscle pain in neck and collarbone
random fevers
Some night sweats
Vein across chest was about 4 inches (it's blue and stands out some) is now showing from one shoulder across chest to the other shoulder. It looks weird. I never had it look like that before. It started becoming blue right at the spot of where my central line used to be last year. It worried my charge nurse in San Antonio, so I'm wondering now.
Muscle cramping
Problems swallowing
Muscle weakness
Nausea

I'm not liking it. The nurse said the pain could be from the steroid taper, but in fact I had actually upped my dose from 4mg a day to 8mg a day this past week.

The pain has been so severe, I've been taking Vicodin and muscle relaxers. Makes for a fun_debu, but a high one. Not acceptable on a daily basis.

I leave Seattle on the 25th. One week. I'm really sad, but am trying not to let it bother me. It does. I miss Zoe, but know I will miss Tim (and Seattle) so incredibly much. As Tim Gunn on Project Runway says we are going to try to "make it work." Long distance isn't always easy, but he's special and amazing.

My sweetie and I rode on the Bremerton ferry this morning. A nice, cloudy and cool Seattle day. Perfect weather when you are with someone you love. Actually any weather is perfect, but the coolness makes for a wonderful day.

I can do this. Regardless. I just hope they can fix me.

Your assignment today is to say hi. I've been missing you all bunches.

Snoozer

I've been sleeping for days. It's been way too hot here in Seattle. Yesterday was nice and cool so I did some straightening up. We are going to have a birthday party on the 19th for my b-day and for Tim's mom and best friend, Tim #2. (My birthday is the 22nd)

I am kind of in a funk. I'm not quite sure why. I've had a lot of pain lately and wonder if for some reason these stupid antidepressants are not working.

[backstory] My San Antonio doctor started me on Cymbalta because I was having terrible neuropathy in my feet (feels like your feet are asleep and it never goes away). The neuropathy was from the chemo I had and Cymbalta, an anti-depressant, is also used to combat neuropathy. Well it worked right away and I was happy about that, but after a few months I noticed some terrible side effects: sleeplessness, mania, paranoia, irritability, etc. I looked the side effects up online and realized that they were pretty significant. I didn't like them, so I told my doctor I was going to stop taking it. He never said no, so I stopped cold turkey. BIG mistake. I didn't sleep for several days and felt horrible and anxious. I nearly checked myself into the ER at 3am because I felt batshit crazy.

Well, the doctor's office was like... woah, that's bad. Don't ever stop cold turkey. So they prescribed lexipro. My insurance made me switch to cytalopram and told me it was a generic version - although later I found out it isn't. So I'm stuck on this stupid anti-depressant when I don't fucking need one, and it's starting to bug me. I hate anti-depressants. My psych doc (they make you see one with the transplant) told me I'm fine and that it's ok to be sad sometimes about what I've gone through. [end]

I feel pretty sad because if feels like my summer is over already. We've been pretty busy here in Seattle and have gone on some baseball roadtrips - Bremerton and Spokane. We also drove for a bit to Idaho and for about 10 minutes in Montana (since we were already so close). The games were fun and we spent a great time in a little town named Ritzville, WA for the 4th of July. I loved that day - so far it was my favorite. We watched fireworks in a gazebo in this little park and the weather was perfect. It just was like magic.

I'm trying to shake the funk, but I get the feeling I won't be coming back here. Tim is great, but his life has become a little overwhelming and isn't sure about the future, much less one with me. It's hard to write this, but it's even harder to feel this way.

I generally hate whinese, and Tim told me not to worry and to enjoy our time left, but this feels really awful. It feels like my heart just hurts. I adore him and love Seattle. I feel so at home here and so comfortable with him. But I understand his situation and don't want to add any additional pressure to what is going on in his life.

So two weeks from today, I will be leaving Seattle. Only the Lord knows if I will ever come back. I'm not a betting person, but my bets are all no.

I can do this. Sometimes I just don't want to and want to be allowed to fall apart a little is all.

No assignment.

Please take note

While walking along the sidewalk in front of his church, our minister
heard the intoning of a prayer that nearly made his collar wilt.
Apparently, his 5-year-old son and his playmates had found a dead robin.
Feeling that proper burial should be performed, they had secured a small
box and cotton batting, then dug a hole and made ready for the disposal of
the deceased. The minister's son was chosen to say the appropriate prayers
and with sonorous dignity intoned his version of what he thought his
father always said: "Glory be unto the Faaather, and unto the Sonnn,
and into the hole he goooes." (I want this line used at my funeral!)

The Tao of Willie

I'm Alive Lyrics
Willie Nelson

It's so damn easy to say that life's so hard
Everybody's got their share of battle scars
As for me, I'd like to thank my lucky stars
That I'm alive and well

And it'd be easy to add up all the pain
And all the dreams you sat and watched go up in flames
You were on, on the wreckage as it smolders in the rain
But not me, I'm alive

And today you know that's good enough for me
Breathing in and out's a blessing, can't you see?
Today is the first day of the rest of my life
And I'm alive and well, God, I'm alive and well

Stars are dancing on the water here tonight
It's good for the soul when there's not a soul in sight
This boat has caught it's wind and brought me back to life
Now I'm alive and well

And today you know that's good enough for me
Breathing in and out's a blessing, can't you see?
Today is the first day of the rest of my life
And I'm alive and well, God, I'm alive and well

Sis #3 Birthday Wishes

Today is my lil' sis' birthday. Unlike most of the other kids in our family, I clearly remember the day my baby sis was born.

Sis #1 and I were in girl scouts that year and our troop had raised a ton of money so we could take a cross country bus from Myrtle Beach, SC to Wyoming to camp at this girl scout site. I don't remember how many states we saw, but it was a ton and was a great trip (even though the can broke down on the bus and we all had to cover our noses with our handkerchiefs ~ peeyew!).

[aside] Happy belated birthday to my friend Cami from SC. She was along on that trip and is now one of my blog readers. Haven't seen them in nearly 30 years, but I still think so much about all those great gals! [ aside over]

That year mom was a leader, but wasn't going with us because she was pregnant with my baby sis (and probably wouldn't have gone with that gaggle of crazy girls anyway) We joked that she'd go into labor when we were about to go to the bus station at 4:30am. Ok. No joke. She did. So our leaders had to swing by and pick us up. We then kept calling home (collect) to find out if Sis #3 was born yet only to have our grandmother refuse the charges. We finally found out days later that Sis was here. She was cute as a button and was always *my* baby.

Now she's all grown up. She's always been pretty damn amazing, but she's always up to something interesting. Right now, she's helping a group of Burmese refugees in Austin.

During the SXSW conference, she attended Frank Warren's keynote speech (from postsecret) and started tearing up when he asked for secrets; she told him about me and how sick I was. She had wanted me to come to the conference, but I was having some pretty bad graft vs. host and couldn't make it. I could barely speak from such a sore throat. He mentioned this on his blog too, which was kind of cool.

I will forever be indebted to her mostly because when I got sick, she took a few weeks off (and then some) to come to Houston and be my caregiver. She lifted my spirits even when I was having a horrible time. She held my hand the day I finally gave up and shaved my head. And when I was feeling punk, she brought me Wolfgang Puck Tomato Basil soup. I will never forget her wheeling me around MD Anderson, hauling ass in my BMW of wheelchairs. She cried and cheered for me and donated blood even when her tiny body could barely give any. She let me rest and chill at her casa in Austin last summer. She just kicks some major ass. I adore her.

It's been a rough past year for her - enduring the breakup on a long-term relationship (with a total jackhole) and some craptastic jobs, but I'm hoping that things will turn around for her as she has such winning ways. She's smart, gorgeous, and has a heart bigger than Texas.

I love love love you, Sis #3. You are totally my solid.

I can do this. Today was a great day to be born!

Your assignment today is to wish my wonderful baby sis a superfantastic birthday!

In Transit

I didn't bring my blog login info with me to NYC, so I wasn't able to update. I have a hectic day and won't be able to write about our trip just yet. (Maybe at the airport tomorrow while I have a layover at LAX) It deserves a proper write up (Mark Wahlberg, Sangria, fantastic food, horky cabs, Africa hot, shopping, awesome hotel).

It was great, but hot. Way too much fun.

I'm so tired I can barely sleep though. I can't wait to get to Seattle to see my debu_sweetie, Tim, and enjoy some cool weather for a change.

Ok. Promise to catch up soon.

I miss Zoe. Was really hard to let her go this time.

All the P's

Packing.

First we drive to Houston tomorrow
Then I fly to NYC with Z & spend the weekend with my Sis #1 and our friend
Then I fly back to Houston
Then I drive back to SA
Then I pack for Seattle
Then I fly to Seattle the next day (June 11)
I don't get back to Texas until July 25th
Zoe gets back on the 26th
Then a week in New Braunfels

Paperwork.

Filling out financial aid application for MD Anderson. Very time intensive but I have to finish today.

I think this calls for a Sixbucks iced latte with an extra shot!

I can do this. I think. (looking forward to my trips, so I know I can do this!)

Your assignment today - what? Does no one have travel plans?

PS I've updated my flickr account. So if you have a flickr, please add me as a contact. Would love to see the photos of my friends too.

Always Missing Someone

I remember once when Zoe was in first grade she told me that she wished all the people she loved were in the same city. I know just how she feels. Most people do. Even though my immediate family is all in Texas, most of them are in other cities, and I have cousins and aunts and uncles that I miss from one end of the States to the other. My sweetheart is across the country in Seattle. My readers, my lovely e-friends, are all over the world.

I was goofing around on my myspace page (no, Helga's not me in a Halloween costume) and re-watched this video:

It just never gets any easier. I loved that woman. A woman I never met in person, but a woman to whom I could relate entirely. We shared secrets. We shared laughs. And many many nights we shared our fears. Never. Gets. Easier.

We are kind of lagging on our fundraising. Just have been a little busy. I think I will try to spend a few hours every week trying to find new resources for fundraising. Most everyone I know is either raising money themselves, or are in too much of a pinch right now ($4 gasoline doesn't help). But I'm sure there is someone who might be interested. Working on expanding resources via Twitter (way too fun, way too addictive) and possibly getting corporate sponsors to add links or advertising on our Team Zoe site. I'm sure we can do some fundraisers after the summer. Zoe wants to keep having them at fun places.

Missing you. And you. But mostly you, Goobertox.

I can do this. It's nearly summer.

Your assignment tonight is to plan to eat some salad tomorrow. When it's 95 out with a 105 heat index and 36% humidity, there is nothing better than a summer salad. What is your favorite salad combo?

Busy

Will write soon. Got a haircut today and she straightened it. I sort of look like me again. Still too short for my taste, but I dig it. And... the whole, yay for having hair again thing.

95 here today. 101 heat index with 36% humidity. Um. GROSS!!! Two weeks to Seattle. They better not suddenly get some huge heat wave when I get there ~ at least we have air conditioning. Heat in Seattle would be tragic.

I can do this. I feel like passing out, but I can make it.

Your assignment today is to tell me your summer plans.

Welcome to ... well me box (TMI Warning)

When you have radiation and chemo, one of the big risks (after death of course) is secondary cancer.

I just got a call from my MD Anderson OBGYN about my January pap smear. According to the nurse, I have atypical cells apparently.

Um. Ok. I knew that. My doc told me that last time I was there ... back in JANUARY.

So my doc is going on maternity leave. And I guess she's going over patient files. So the nurse calls me and tells me they want to do a Colposcopy.

Apparently they want to do it now, but I'm tired as a mofo and don't want to drive, nor do I have the time, back to Houston (SINCE I WAS JUST F*CKING THERE TEN DAYS AGO). It took me 2 extra hours to drive home because I had to stop and walk around a little since I was tired and sore. We won't even discuss the traffic.

So, since I will be in Houston already, I told her to do it then. Lovely.

I'm hoping for no biopsies. I think a sore box would surely ruin my trip to NYC. Not like I was planning a big party, but my sis and I and the awesome Diane were going to museum, foodie and maybe shop.

Whatever. I am so over this already. It's just aggrevating and I am not going to worry about results or anything until/unless I have to.

I can do this. I have a summer planned in Seattle.

Ok. That is all. Your assignment is to enjoy your weekend. Zoe has soccer, I'm going to get to see my Bro #2 and his wife (I wish more family could come) and then we have first communion. It's kind of a big weekend for the Debu_household, but I'm going to enjoy myself.

Inso-maniac

Hard time sleeping. Kind of achy like I'm fighting a cold. Blah. But here's something cute to cheer me up.

Z with curly hair. Forget Hannah Montana, Zoe's cuter and funnier*. The girl posed like a cover girl. Now to work on her singing voice.

And Welcome to My World

* you know you're tired when you question yourself ... is funnier a word? And you go over it again and again in your head. More fun. Fun. Funnier. Funniest. Oh yeah, America's Funniest Home Videos. Funnier. F-U-N-N-I-E-R. Yes, that's it. Then you look it up for good measure because for some reason you are too tired to trust spellcheck.

Love

Totally in love with Amanda's niece Ruby Elizabeth. Isn't this just the most precious picture of all time?? Sweetness personified. How could you not have baby fever looking at this photo? If only I were 20 years younger and much much healthier, I'd birth my own baseball team.

And also now in love with Collective Soul

What a gorgeous song. CS is now on my must see concert list.

Must see (or see again) before I croak.

Never seen before
Lenny Kravitz (never seen, but he's my all time fav)
Jack Johnson
Sufjan Stevens
Allison Sattinger
Allison Krauss - hopefully with Robert Plant
Willie Nelson - sadly have never ever seen him and he's just awesome
Wilco
Collective Soul
Elvis Costello
Elton John
Raul Malo (great singer - incredible voice)
U2
Aqualung
Beck
Ben Harper
Aretha Franklin
Busta Rhymes
Sade
Rufus Wainwright
Sting
Moby
Peter Gabriel

Have already seen
Tina Turner (saw her years ago at Sea World in San Antonio. It was Africa hot and she was amazing. We were like f*ck Shamu, let's go in the restaurant while we wait for her to start)
Lyle Lovett (saw him a few times in Austin - he just jams out with his Large Band)
Jimmie Vaughn - used to see him a lot in Austin
Rolling Stones (if they are still alive)
Neville Brothers
Paul McCartney
Bo Deans
Jimmie Dale Gilmore
Jesse Dayton
Santana (my ex-husband knows the guy who used to be the lead singer - we got great tickets to this)

ok. I'm sure there are tons more.

I can do this. But I'm sleepy.

Your assignment for today is to tell me who is on your must see list.

Prelim

Called MD Anderson.

Preliminary Biopsy Results Show:

27 Months of remission. It's like when you have a baby and you still count in months. I can't wait until I can count into years!!!

Just blessed is all. I am so very very blessed.

Thanks for all the prayers & good vibes and for loving me.

Am I Awake?

The biopsy was as good as a biopsy can be. My technician, Terry, is awesome. She's the best and my favorite because she's hella cool too.

But it still hurts. Like a mofo. And I have a hideous bruise on my inner arm from the tape where they took a blood sample. I so look like a crack ho junkie now. (but that's usual, no?)

Dr. Q says I don't have GVH of the mouth. Then what the hell is it? He has no idea. Great. Tapering steroids starting tomorrow.

Labs look good. I got the all clear to go to Seattle for the summer. But of course.

I can do this. I'm very glad this day is over.

Good vibes for the biopsy results. I hate waiting, but still.

As Funny as Ass Killing Can Be 2008

I'm reposting this (original from Feb 2006) as I get another bone marrow biopsy tomorrow at MD Anderson in Houston. I hate them. It makes me so nauseated just thinking about it. The last one I had done was a mess ah... ROOKIE TECH!!! I was sore for months (usually only sore for a week). I'm dreading dreading dreading this one. I don't know if I could even handle a result that tells me I've relapsed. I am not even going to mention pain. This is the most painful test they give us.

My lovely longtime reader Pam C just passed away. As did a very brave Alabama boy named Zach. I lost track but I think that makes 30. Please pray/send good vibes to both their families. Pam was a sweetheart and used to send Zoe letters and drawings and stuff. She had 4 cats and a spirit that just was so sweet. I am just a little numb over this.

Ok. Must force myself to pack. I always hate this drive!! Love you!

The test from hell is now done.

Not only did they do the bone marrow aspiration, they did a bone marrow biopsy as well. I haven't had one of those since late October when I was diagnosed. I forgot how much they hurt. I am glad I didn't know ahead of time that I was getting that done too. I think I would have flipped out a bit more. Last time I was sedated. I barely remember it.

This:

There will be a sharp stinging from the anesthetic injection. As the aspirate is withdrawn, there may be a brief, sharp pain. The biopsy needle may also produce a brief pain, usually more dull. Since the interior of the bone cannot be anesthetized, this test may cause some discomfort. Not all patients experience these symptoms, however

is a complete fabrication.

There is nothing brief, nor dull about that pain. Some discomfort? I don't know one leukemia patient that doesn't experience major pain with this procedure. It's like having someone drill a corkscrew through your ass cheek into your hip bone. That's exactly what it's like.

I was cursing up a storm. In Spanish even. I don't even hablo Espanol.

I cried though. It was like spontaneous and I couldn't stop it from happening. It was so weird. Afterwards my blood pressure went way high. Like 188 over 135. They had taken it earlier and it was 122 over 72. I never have high blood pressure. Never. This test, she so not normal.

I took a Darvon beforehand, but I might as well have swallowed some M&Ms. And since they had me do it early in the morning, I ended up limping around to my other appointments. Chest X-ray, labs, leukemia doc, pharmacy, (got a yum lunch in here), then my endocrin doc, back to pharmacy.

The tech numbed me up so much, I was numbed all the way down to my right toes hours later. I came home and passed out while watching Footloose. I think that's what you are supposed to do when you watch that movie.

I'm still having problems walking, but I hate to take anything for it. Makes you too groggy. Thanks to my 'Bubellah' Monkey Boy for sending me funny text messages all day. Because there was nothing funny about today.

Tomorrow I only have a few appointments, but my schedule is now three pages long. All kinds of tests. I'm glad they are starting to do this, but gosh, it's exhausing. I want me one of those little scooter things. But I know this walking is good for me.

I can do this. I am doing this. With a sore ass, but still.

Today your assignment is to give someone a massage. The world would be a better place if people gave more massages. And if you don't have anyone to give a massage, go get one. You've earned it.

May 5th - 19th Thank Yer Mom by Saving a Life. And Pie.

I had leukemia and needed a stem cell transplant. My awesome brother was my donor. And I am one of the lucky 30% of patients who have a related match from someone in their family (Good Catholic family with six siblings - whew!).

I'm now still alive two years later solely because of my transplant. As of today, literally, I have now lost 30 friends in those 2 years to leukemia or transplant-related complications. I promised my "freakishly strong" friend Brenda Donato that I would never ever ever give up trying to find a cure. That I would never let anyone forget her or what she went through. I made my daughter promise to continue that mission as well. teamzoe.net (she's pretty gung-ho this year & wants to raise $30k)

The National Bone Marrow Program is here to help the many patients who do not have a match. Please consider joining the registry. The procedures for donating are not as hideous or painful as shows like Grey's Anatomy and House show them to be (um, can you say sedation? Painkillers? Apheresis?). My brother did his apheresis and drove from Houston to Austin the same day as his donation. I gave him a lemon meringue pie (per his request) for saving my life. I could never repay his gift to me; except by living a very long, stubborn, happy life. And by trying to spread the word to help others.

(go here to get your own cute blog/myspace widget)

Or a banner:

I'll be writing more posts on the drive. Seriously. If you are not registered, you can register at a donor drive for free AND ONLINE during the Thanks Mom Donor Drive. Just a cheek swab kit mailed to you - kinda like those cool CSI DNA tests.

It sounds scary, but imagine if one of your loved ones (or you) were going to die because they don't have a match. What if you knew that there is someone out there that could save their life? That the donor probably has no clue about the program or that a simple donation of some stem cells (no, not embryos - don't go there) could be their only hope for a cure. Save a life. It's the right thing to do. And you might get pie. Or Pi. Or both (for Kiera)

When you become a bone marrow donor, you join the global movement of more than 10 million donors who stand ready to give someone a future.

That "someone" was once me. I'm so grateful to still be here to talk about it.

And if you end up donating, I promise I will send you a pie!!

My stem cell transplant month posts if you are interested in what happened then.

Mother's Day and Thanks Mom Campaign
May 5 to May 19, 2008
During the two weeks around Mother’s Day, be part of our Thanks Mom awareness and donor recruitment campaign. What better way to say “Thanks, Mom” for giving you life than to share that gift with another person!

During the Thanks Mom campaign, costs to join the Registry are covered by our generous partners and contributors for the first 46,000 who join the Registry. (This includes the first 10,000 who join online.)

Help patients who need a life-saving marrow transplant:

* Join the NMDP Registry. You could be the one to save a life.
* Tell your friends and family others about the opportunity to save a life by sending them an e-mail (upper right corner on this page).
* Give a financial gift. Every dollar you contribute gives patients hope.

You can provide hope to the thousands of patients who need a life-saving marrow transplant.

You are needed

* On any given day, the doctors of more than 6,000 children and adults are searching the NMDP Registry for a life-saving donor.
* Seven years ago Alexandra needed someone—and a donor was there for her. Today, 13 year-old Alex practices karate with her brother Matt, is a voracious reader and loves playing with Rosie & Princess—the beloved four-legged friends in their family.
* Like 70% of patients, Alex and her brother Matt, who has the same disease, did not find someone in their family who matched. Two compassionate people, perhaps someone like you, gave them a chance to grow up, to play…to just be kids.
* Diverse donors are critical. Patients have the best chance of finding a match within their own race.

As Alex and Matt's mom said, “It is a beautiful world when we all work together to make a difference. I will never be able to thank the kids' donors or all of you enough for giving me my children and these priceless lessons. I am just a mother who tried to save a life. Twice.”

Every person deserves the best chance for treatment
The NMDP is dedicated to providing hope and delivering a cure to people who need a life-saving marrow transplant.

You can make a difference.

* Join the Registry. During the two week campaign, our goal is to add 10,000 donors online and 36,000 donors at marrow drives.
* Tell your friends and family by sending an e-mail (upper right corner).
* Give a gift. Raising $100,000 can only be accomplished with your generosity.
* Grow the garden. Add your photo and encouraging message to this virtual Donor Garden, a community passionate about saving lives.

Every donor added and every dollar raised helps save lives.

Please, people. it's the right thing to do.

Survivors Kickin Ass!!

I'm going to pimp Diana's link for her Team in Training efforts. I'm always amazed when people who have/are going through treatment are up for training for an event and actually completing one.

Dear Debby:

Well, amazing as it seems, it's been almost a whole year since I did the Mayor's Marathon in Anchorage AK to raise funds for the Leukemia & Lymphoma Society.

Thankfully, I'm still in remission. I'm coming up on the 2 year anniversary of my cancer diagnosis. Hopefully, if I continue to stay in remission, I'll finally be able to have my port removed by the end of this year.

I've been keeping up with the physical training routine and in a few days I will be participating in the Cincinnati Flying Pig Marathon with the Leukemia & Lymphoma Society's Team in Training program. I was hoping to be
able to complete a full 26.2 mile marathon but my old body has told me to think again, so I'll be doing the half marathon this year. I'm determined to be physically strong enough to do a full marathon some day, but right now I'm just grateful to be upright & moving :-)

If you are in a position where you able to once again contribute to the very worthwhile mission of fighting blood cancers with the Leukemia & Lymphoma Society, please click on the link to my website. I've started my fundraising
a little late this year, but I'm hoping to still reach my goal of raising $2,000 before the end of May. (she has only about $365 so far - let's help a chica out, debu_peeps)

I hope that this e-mail finds you & your loved ones in good health & that you are enjoying this Spring season.

Thinking of you & wishing you all the best...

Diana

"In 2006, I was diagnosed with an aggressive form of non-Hodgkin lymphoma. After some hardcore chemo, I kicked cancer's butt to kingdom come. In June 2007, I celebrated by participating in my first Team in Training event, a half-marathon, on the exact 1-year-to-date anniversary of my cancer diagnosis. How sweet it was to be able to cross the finish line under my own steam and in remission!"

http://www.active.com/donate/tntsoh/DianaKlau2008

I can do this. Because of people like Diana! Go D, go!

Your assignment is to donate $5 - $10 to Diana. I know I'm always asking for money, but having a survivor raise money for a pretty grueling event is really special. It inspires me and so many others to see that cancer does not own us!!

Love you. And especially you. Working on my Seattle posts, but I'm still gushy and loving that city and my Seattle folks.

Seattle. Packing. Beyond Excited

We are headed to Seattle after school today. I've never flown with Zoe, but she's been on a plane a few times with her father, so I am sure she will do well. Especially since she's got some gadgets - Nintendo DS and books and stuff.

Tim is just so cool. I cannot wait to see him again. We have some great things planned for this week. I really am beyond excited to go because it's a part of the country I have never visited before and, well, *whispers* Tim is there.

The only downfall is that I have to wear a mask the entire time in the airport and on the plane. I think that's about seven hours total. It makes me feel like a freakshow, but if it keeps those oogie germs off me, then who cares? Zoe is going to look perfectly adorable. She wanted to wear this cute funky patterned dress with her leather jacket and these little wedgie heels. She has a matching purse/wallet, and wants to wear her sunglasses. Um. Hilarious!

Ok. Much to do. I'd like to go somewhere without wearing a ball cap for a change. This entire week I've been hoping What Not to Wear wasn't videotaping me, because I've been looking just too ridiculous.

I can do this. I'm going somewhere it isn't Africa hot (it was 90 here yesterday - APRIL - AHHHHH!!!)

Your assignment today is to say bon voyage! Love you internets!!!!

Safe Journey, Laiken

I fucking hate leukemia (no apologies forthcoming for the f*bomb either). Who doesn't know a lovely 13 year old girl?

Love 4 Laiken

This is not ok. Please help us find a cure by donating to Team Zoe. Parents should not have to make these kinds of decisions.

" TUESDAY, APRIL 22, 2008 01:53 PM, CDT

Jim and I have made our decision......we just talked to Dr. Kapoor and really the machine is doing all the work for Laiken. She is starting to have some irregular heart rythyms and I really think it's just her time to spend eternity with our Lord Jesus Christ. Her oxygen levels still keep going down and now she is in the mid 30's at the highest and we have even seen some high 20's. A pastor from our church is on his way as of right now.

Jim and I have made the decision to stop some of Laiken's meds and just let her go peacefully. We will have them give her lots of pain meds and then stop the Dopamine. They will take the tube out of her mouth and let us have some time with her until her little spirit goes to heaven.

I can't believe that we have come to this point in our lives where we have to make a decision like this. Laiken has faught for so very long and so very hard that it hurts to see her go like this. I never thought that this would be the way that we would have to see her go. I do know that when the time comes that Laiken has more than earned her wings in heaven. She has taught so many of us so much in her only 13 young years of life here on earth. I had hoped for so much more for her here on earth and now I have to let her go. She has blessed so many of us in so many different ways and again I will say "I am so proud to be able to be the one who she called Mama", I just hope I was a good enough Mama for her. She loved life to the fullest and I know she will light up the heavens above with her beautiful smile. This will be our loss here on earth from such a perfect child.

Please keep us all in prayers.

With much love and my deepest sorrow, Stacey"

God bless you and your family, honey. Fly free. We will keep fighting for you. I showed Zoe your website and talked to her about our responsibility to keep fighting for a cure until no one else gets cancer. That even when I'm gone, she must continue and her children must continue to help. I am so saddened for Laiken and her family, but I am determined. I get discouraged fundraising sometimes because I'm always always asking, but I will never give up.

Because I know exactly that feeling of leukemia striking at any time. It doesn't discriminate. I have seen all ages, all races, all financial backgrounds ~ all stuck in the waiting rooms in hospitals all over the world. Some living and some dying. It's horrible, as all cancer is. It's horrible on you, but moreover, it's excruciating for your loved ones.

Update:

"Dear Family and Friends,

Our precious Laiken has gone to be with our Lord at 4:36pm today. She is celebrating with the Lord and all of our loved ones who have gone ahead of us. Please keep all our us in your prayers.

With our deepest sympathy, Jim & Stacey"

I can do this. I owe them all. Just too many loved ones to list. It's hurting my heart.

Your assignment today is to send prayers (good thoughts if you don't pray) to Laiken and her family and loved ones. Thanks

Horkoriffic

Been throwing up and otherwise sickly. Yay. Not. No clue. Think it might be food poisoning. But I feel horrible and I think I'm way dehydrated. I'm wanting a Gatorade Icee.

So, since it's been so tense around here, I have a completely inappropriate joke for you all.

Three women: one engaged, one married, and one a mistress, are chatting about their relationships and decide to amaze their men....that night all three will wear a black leather bra, stiletto's and a mask over their eyes.

After a few days they meet again.....

The engaged girlfriend: "The other night, when my boyfriend came back home, he found me with the leather bodice, 12 inch stilettos and mask. He saw me and said: "you are the woman of my life, I love you"...then we made love all night long.

The mistress: "Ah! Me, too. The other night I met my lover in the office and I was wearing the leather bodice, mega stilettos, mask over my eyes and a raincoat, when I opened the raincoat... he did not say anything.....but we had wild sex all night."

The married one: "the other night I sent the kids to stay at my mother's for the night, I got myself ready-- leather bodice, super stilettos and mask over my eyes. My husband comes home from work, opens the door and says:

"Hi, Batman! What's for dinner?

Safe Journey Lovelies

People often ask me why I continue to advocate for funding and donations for the Leukemia & Lymphoma Society. Why I strongly encourage people to donate blood. Why I tell people to sign up on the bone marrow registry. And why I continue to tell my story and the story of others.

Because I miss her every day.

These three beautiful ladies were all taken from us way too soon. Brenda, Liza and Victoria.

and yesterday, Robin.

"I want to live long enough for my daughter to remember me. ~ Robin G."

I take this personally. I only know of these women really from the internet, but they are my secret sisters. Brenda was my secret confidant on Instant Messenger. I had met Robin and her family once at MD Anderson. They were so wonderful, funny and hopeful. Each loss feels so devastating to me. Each loss is exhausting and sad. And behind each loss is a family. Friends. Loved ones who now have to try to continue with their lives despite the pain.

Kadin. Precious Angel. I spent the morning in tears.. I will never give up, Emily. I just can't.

I'm tired of asking, but I'm more tired of them all dying. I know that everyone has their own thing going on. But I will take any amount you are able to spare. I will take your prayers. I will take any post on the internet about this - a myspace bulletin, a twitter login, a blog post. My heart is really heavy today. And as much as I never ever want to be the subject of a post like this, I can't help but continue to fight for all of those who aren't with us anymore. I'd want someone to do the same for me. I love you all. I really do.

Anyone know where my Hong Kong Fiona is? I've been missing her.

I can do this. I have a mission to finish.

Feminist-trolling

Time for some troll smackdown:

Your assignment today is to comment back to Chy on her boycott of blood drives:

"and my reason for not giving blood- I am boycotting the homophobic regulation keeping gay men from donating blood. It has been proven time and time again that sexual orientation does NOT mean that you have HIV, or that you are more likely to have HIV. As you said- every needle is new, and every type of blood is tested (of COURSE), so why do we have this restriction other than to make the assumption that gay men have bad blood? I, along with many other people have boycotted having the blood drive come to our campuses (of the 23 campuses of the CSU system) because of this."

I don't know her. Never heard of her, don't know where she came from before she left me the above, but have some pretty choice words to her comment. How 'bout those of you who are a bit more... um... tactful... answer her?

Warning: Cursing in the extended entry.

My answer - sorry, had to before I sploded: You selfish, self-absorbed, fucking bitch. Sure hope you and yours never ever need a blood transfusion. There are lots of people who aren't eligible to give blood for whatever reason. Do you think they'd boycott and deny someone a chance at life? Oh, I went to Germany, was a needle-using drug user, or had hepatitis and can't give blood. Fuck the blood drive. Screw them if they don't want our blood.

Donate. It's the right thing to do. Sorry if you aren't eligible, but why not recruit people who are eligible to donate instead of being a fucking douchebag and boycotting? Or writing the FDA or the Red Cross about this rule? Because it isn't just heterosexuals that need blood in an emergency or illness. It's children, elderly people, all races, ages, religions, sexual orientations, etc. etc. It's ME you damn fucking asstard. You best pray it's never YOU or one of your loved ones, dipshit.

I challenge any of my readers to volunteer with a blood drive or organize one just to show Chyasshat that donating blood is far more important than anyone's perceived umbrage at being discriminated against.

And Chy, I triple-dog dare you to go visit a family who has a child with leukemia and tell them about your noble *snort* boycott of blood donations. Fuck you! Don't ever show your face here again.

Steroids & Not the Barry Bonds Kind

Well, they upped my steroids. My Dr. said it is (or guesses) GVH of my mouth. So we will see what happens with this new dose.

The guessing drives me nuts. Their only saving grace is that the staff (esp the nurses) are so awesome.

Zoe is home with a tummy ache. I think I'm going to take the day off and do some pampering. I've been feeling so punk that I'd like to have some nice mom & Zoe time.

I can do this. I smell so pretty!

No assignment. Enjoy your weekend. Get a designated driver, please.

Insomnia is Stealing My Soul

Fix. Me.

I can't write so I'll use my mad haiku skillz at 5am. Again, literally bone tired, this time medicated and still tossing and turning, restless and aching.

Mouth pain back in force
Agony of debu_lips
I'm happy but sad

Ouch I can't even haiku. I'm set to get up in an hour to take Z to school.

Enough!!! I need a real doctor who is actually interested in making me better rather than having good survival stats. It's called quality of life. I'm at the point where I would try just about any quackwackery to fix what ails me.

It may be time to break out Sis #2's GREEN GOO!!!!

Easter Supper

We had Easter tator tots and a few grapes. And who needs wine when you have Gatorade?

We are going to have Easter dinner when everyone can enjoy it.

Bleegh

I have been so sick for the past few days. I think I had food poisoning or something. I haven't been able to eat anything since.

Zoe had a great birthday. I love seeing her so happy.

I hope you all have a happy Easter. I'm going to attempt food.

I can do this. I'm in a fantastic mood all things considering.

Supa Bed Heads

Me and Z at 6:30 this morning (check out the cute little freckle on Zoe's nose)

and If


and

had a love child, she would look like:

No Sleep for the Weary

I could not get to sleep last night. The last time I looked at the clock it was 4:45am. I didn't take anything to sleep because I only have one ativan left. I am taking it tonight. Probably at 8pm.

I have a lip full of fever blisters now. Insurance issues are preventing me from getting some of my meds. I ordered some in the mail, so I'm waiting to get them. I'm going to ask a doc friend (which I hate doing) to see if he could give me some samples for a week of a few meds. I hate to ask. I hate whinese. I hate pain. It so sucks it because I'm in such a great mood. I want to be well. I want to feel well.

My trainer kicked my butt yesterday and now I can barely walk up the steps or squat enough to sit in a chair. I don't think he has any idea what my body has been through. I can't afford a workout that is going to make me MORE sore than I already am. As it is, I need to take daily painkillers. I try to skip a day or two here and there because I don't like them. But then I end up walking like a 90 year old woman.

So the good news....

My niece and nephew are coming for Spring Break. I think some of my siblings might come up this week as well. It's Zoe's birthday week. I love her birthday and love to make a big deal about it since she's my only kiddo. I haven't bought her anything because she really doesn't need anything, but I probably will just take her to Target and let her pick something out.

Sis #1 is so awesome and she bought us the tickets to go see Cirque du Soleil. I know Zoe and my sister's kids will love the show. I'm going to take Mom too. I think it's going to be soooo cool.

Ok. I'm sure there's more good news, but I think I might need a little nap before I pick up the Zoester.

I can do this. I feel craptastic, but I'm still here.

Your assignment today is to help a friend if you can. Long time reader and a good soul is having some bad bad bad health problems. Pam has been through hell and back, but she always is so sweet. She asked if I could spread the word.

Need big prayers and financial help big time for things like utilities, gas, copays etc if you don't mind posting for prayers and such.
Benefit info:
Pam Carman Fund
Attn:Sandra Jackson
2968 Soapstone Mountain Road
Staley, NC 27355
or paypal of felineloverpam@gmail.com

Sometimes it's hard to be a blogger. People in your life are busy, so they just stop in and read your blog to check in on you. But they stop talking to you sometimes. And since they read your blog, they feel connected to you and cool about it because they know you are still going. It feels lonely sometimes. I've gotten really close with some people and then they just get too busy to chat or call. But as long as they see a post, they know you are still alive.

I really miss my Houston friends. I have zero social life here. Maybe this summer I can crash somewhere in Houston so I can have some fun and just see people. I want to spend some time in Austin too, but not sure where to stay for a long period of time.

Snap, Crackle, Pop

Zoe must be wanting some major present action for her birthday (March 20th) because she's been helping with the housework. She's been extra cheerful. This past weekend she vacuumed and dusted and swept and then helped do four loads of laundry.

Slept a lot today. But I have a paperwork nightmare on my hands so I've been trying to get through it all. Today I just let my mouth rest and didn't put anything on my lips because they are like just beat up. I swear it looks like someone punched me in the mouth.

I lounged in my jammies all day. But tomorrow it's back at the gym. I'm going to try it, but I sure hope that my trainer doesn't make me do too much cardio. I want to strength train and improve my balance.

Ok. I have to go tuck Zoe in to bed.

Here I am with my glossy lips and my Texans jersey.

I can do this. It was a jammie day.

Your assignment is to get a good night's sleep. This daylight savings time is awful.

Still Here

I can do this. I honestly really don't have an option.

I started taking the vicodin at night so I don't wake up in pain. So that kind of helps.

But today, the blisters are worse. It hurts to swallow. So I had an ICEE. I wish they had lower sugar or calorie Icees. I don't want to know anything about the lack of nutrition whatsoever. All I know is that they make my throat feel better.

Now my lips are peeling and won't heal. I still can't smile. I'm online and am about to search on stuff that will heal my lips. Carmex and the normal stuff just doesn't work at all.

ok. gotta go. Thank you all for the sweet comments. They really remind me of what is important.

I can do this. Busted lip and all.

Clue Less

I slept nearly all day today. I'm a zombie.

My doctor thinks that it is graft vs. host. The blisters in my mouth, the muscle pain, the itchy skin. We are taking a wait and see attitude. Come back in a month. Call if it gets worse. This feels hopeless.

No explanation about the complete fatigue all day. And I sleep all night too. What kind of life is this?

I hate that daylight savings time is coming soon. I can't get Zoe to bed on time as it is.

Speaking of. I have to go.

I don't feel like I can do this anymore.

It's Not Viral

They said that so far the test is negative for a virus in my mouth. I have no idea what it could be. I sure hope it's not graft vs. host because then I have to up my steroids again. My lips hurt too. Like they are burned or something.

I woke up feeling really terrible. Just way too much pain. And I'm still coughing my head off. It's pretty miserable and sucks because I'm actually in a great mood. I so am stir crazy from being so house bound. Zoe's doing better and has been outside a lot. I want to feel better and get back to the gym.

Mom said if they can't figure it out here in SA, that I should take a day or two and fly to Houston to see my docs at MD Anderson. That sounds so un-appealing.

I don't feel like writing.

I can do this. Eventually I will feel better.

Your assignment today is to say some prayers for my cousin and his family. His wife Sue died during heart surgery yesterday. I talked with him briefly on the phone and he sounded pretty awful. Mom said she was just such a good person and very sweet. He sounded so all alone. My cousins are so great and this is really sad. I love y'all.

So Proud to be Two

Today is my "new" birthday. Feb 27, 2006 was my stem cell transplant. I read over entries for that month, and it was hard to read. I remember how sick and scared I was. And how I didn't want to give up.

No cake for me today, but here is one of my favorite two year olds enjoying some food.

I can do this. I'm two years old!!

Old Guys Rule

Happy belated birthday to my dad!! We celebrated on Saturday, but I was so entirely out of it that I didn't really get to do much celebrating. I did buy him this great shirt that says, "OLD GUYS RULE." And I actually found a whole site where you can buy them. I want to get one for myself because, well, I do dig old guys. And the t-shirts are cool. Dad is cool too. I love you, Dad. I hope this is a great year for you. You are wonderful.

I spent most of the morning at the transplant docs here. It's not thrush, but there is a chance that it is viral or it could be chronic graft vs. host of my mouth. They upped my anti-viral meds to three times the dose I currently take. Now I have an agonizing headache. They swabbed my mouth and did some lab work. Not sure if it proved to be viral (I was asleep when they called to tell me to up the dose). But it sure hurts like a mofo and there are now more blisters I have to say, whatever it is, I hope I can get rid of it soon. It's pretty miserable. All I want are cherry Icees.

Zoe goes back to school tomorrow. I don't think she's ready as she still has some residual cough and she's just been so out of it for a week. She has tons of homework and I hope that we can get it all finished. Mom was a total white tornado today and cleaned and did laundry and helped Zoe with her homework. What can you give someone who does so much for you??

I can do this. My mouth hurts, but that gives me an excuse to eat jello.

Your assignment today is to wish my dad a happy belated birthday! Smooches!

I can't even smile, but at least I want to

Well Z and I finally got rid of our fevers, but we both are still coughing our heads off. I am so glad we were able to join my family in Austin on Saturday. Even though it was exhausting to drive there and drive back, it is always so much fun (albeit super loud) to get my entire family together. They are all just a blast. Sis #2 got a hair cut after she donated her hair to Locks of Love and she looks great. I totally have hair envy. Sis #1 has been doing something different too because her face looks so young! As usual, she looks superfantastic. And my lil sis, Sis #3, just is so adorable. Even when she doesn't really dress up, she looks so cool and chic all the time. I hope the pictures turn out well. I was feeling super duper craptastic.

And my brothers. Man, they are funny. They made a movie for an Alamo Draft House contest and we laughed our heads off. Bro #2 and his wife catered the party with some yummy Salt Lick bbq. We hung out in their back yard and the kids ran around like bonkers and we saw deer and these monster bulls at the neighbor's ranch.

I have a dr. appointment at my transplant clinic tomorrow. My mouth is a hot mess. I took some Flonase and some albuteral inhaler stuff last week when I was desperately sick and hurting. Ever since then, I have some serious infection or something going on. I have blisters all over the roof of my mouth and my cheeks. My lips are so chapped, and nothing is seeming to make them stop cracking. It hurts to eat or smile. This is totally unacceptable.

I've been using this rinse stuff in my mouth to help heal it, but it feels worse than ever.

At least I don't feel like I'm on death's door.

And special thanks to Dr. L for letting Zoe sneak into his office on a Sunday. He fixed her up with some major cough syrup and a course of antibiotics. Hopefully that will kick this crap right in the butt. We can't have the bird-talker feeling punk, now can we?

I can do this. I just can't kiss or smile for a while.

Your assignment today is to tell me your favorite food when you are sick. So far, mine is a freezing cold Cherry Icee. And those popsicles are darn good too.

It's a good ol' fashioned dance-a-thon!

I'm pimping for my friend Monica E, the Tiara Chick. She's fundraising for the City of Hope by doing a 24 hour cancer dance-a-thon.

Here's the link to her fundraising site. She's only $10 away from her $200 goal.

Help her blow it away!! City of Hope is a great hospital.

Cheers!

Sick Little Bird Talker

Zoe's fever goes away with tylenol, but then it blasts right up to 103.5. She's uber miserable. I could barely get her to eat anything and have been forcing her to drink fluids. She's been in bed all day and has actually taken some naps during the day which she *never* does. I don't think I've ever seen her this sick before. It's breaking my heart.

I can't seem to make my fever go away yet. It's not as high as it was, but it's steadily between 99 and 100. I still feel crappy, but better than I did just yesterday.

I hate this. We had a big weekend planned with my siblings to have a birthday celebration for my dad and take a family portrait. I'm not sure if we will be well enough to go.

I know the gym can wait, but I hate to lose everything I already started. I bet my cardio will be for crap again. Oh well. I will be persistent.

I can do this. My bird talker needs her mom.

No assignment today.

The Zzzzzz's

I slept all day. Like I didn't even get out of bed until 6pm.

Now my poor baby Zoe is sick with this mess. Her fever hasn't been as high, but she's feeling superpunk. I don't even have the energy to cheer her up. All she wants is to be with me. To have me comfort her. But I'm feeling so awful. At least we got to nap together this afternoon. I hope I have more energy.

Poor Momo is stuck being the nurse. She even made a run to Sonic for me because all I wanted was something icy and cold.

I know my fever is breaking tonight because I took some Tylenol and even though I just took a cool shower, I'm perspiring like crazy.

I'm not as scared anymore, but I hope that my fever disappears soon. I have now had 4 days of the fever. I'm so not diggin that.

Thank you all for the encouragement. Please send prayers and good vibes and wishes that no one else in our family gets this.

I can do this. My birdtalker needs me to comfort her and make her laugh.

Your assignment today is to get some extra sleep. Take your vitamins. Stay healthy peoples!

I love you internets. Be well.

102 Baby

My fever keeps climbing. They think I'm on my way to getting bronchitis, so they gave me a shot in the bootie and some big time antibiotics for 11 days.

I went to my friend's office and I've never had such a pleasant experience with staff before. They listened carefully and weren't rude about all my health issues.

I'm feeling really punk and can't seem to get warm. I hope these antibiotics kick in soon. I don't feel like eating anything, but am trying to maintain.

I'm going to try to go to bed, but I feel like my eyes are on fire.

I'm scared. No lie.

More Cowbell

I have a fever - 99.7. I guess I'm so high from the pain meds for the muscle aches that I didn't notice quite how awful I feel.

I'm scared and afraid to tell anyone. All mom and dad do is to tell me to take Airborne (which does nothing for me). The doctors all just blow you off & don't ever think a low grade fever is anything (uh... steroids mask a higher fever). And this is exactly how the encephalitis started. The flu is going around and I was around a big group for Zoe's "reconciliation retreat" (mandatory) for her first communion. I had a bad feeling about that. I should have worn a mask.

Mostly I'm just mad that I have to cancel 2 gym appointments tomorrow. A followup with my nutrition coach and a training session. I refuse to give in to this. I need to remain determined to be fit.

The Hair Report

Full on steroid face. Feb 2007

Yesterday.

Not too bad for a 40 year old with messy hair, no makeup on except for Dr. Pepper chapstick. I wish I had some better pictures. I'm ready to look cute again. I have some really sexy shoes, but I'm not strong enough yet to walk in high heels. They are another part of my inspiration for my training.

I remember looking (and feeling) like this:

I'm determined. I still feel mischievous and sexy on the inside. I'm feisty and sassy. Full of snark. The outside will take a while, but I'm there. I'm coming back. It's a fight but I'm doing it!

Training is going better. I don't know why it's so difficult to do the exercises he gives me. I totally get out of breath and feel like I'm going to pass out. Yet I've worked up my low intensity cardio to almost an hour at a time, and I break a good sweat, but can maintain my breathing.

He told me that my flexibility will improve with strength. I hope so because I feel like a rock when I stretch. Sooo not flexible.

I can do this. My nutrition coach gave me 1700 calories a day and some good menu planning.

Your assignment today is to make some time for yourself. Everyone is busy, but it's a must to take some time out to care for yourself. Relax, eat well, read, watch a movie, and get some extra zzzzsssss. I can tell I'm sleep deprived when I sleep through my alarm clock.

I know so many people who just run themselves to exhaustion. Beware. Sometimes you just have to say no. I met this beautiful woman at the gym pool the other day, but she talked about feeling unhappy. It kind of made me sad because she had 2 gorgeous kids and was incredibly sweet. I think she just had too much going on in her life.

Too scheduled. Kid chauffeurs. So slow it down. Take some time.

Great inspirational story of a woman who lost 120 lbs.

I didn't get a single flower. Men... have you ceased to worship me?

Depleted

What is it called when you pray to have more grace? Or you pray to be more grateful?

Because I'm not feeling very grateful lately. And I don't like it.

I'm grateful to be alive. I really really am. Especially when you consider the alternative.
I am not grateful to be alive and in constant pain or high on drugs so I am not.

I am not grateful to feel depressed more than I ever have in my life. And I'm *on* antidepressants (what a load of crap they are) I think when my insurance company MADE me switch to a generic version it stopped helping. Or perhaps it's just the wrong drug for me. Hmmm.... Could it be I never needed anti-depressants in the first place and you damn doctors prescribed me one to help with the neuropathy in my feet but never told me it could have horrible side effects like sleeplessness or depression or mania or paranoia? That when I told you I didn't like it, you said, oh well, now we will have to switch you to Lexipro, but it's "like baby aspirin." Now when I try to taper off the anti depression generic crap, I'm really sad and feel super depressed. But who cares, you're alive, right?

I am not grateful to be alive when I can't sleep anymore. When no doctor can tell me why I can't sleep. When they all blow me off when I tell them it is awful. When they tell me it's the early menopause or the medication. "What time do you take this pill. Oh, morning. Well what about this? Yes. I see. Well, that just happens." No, motherfucker, sleeping only 3-4 hours a night doesn't just happen. Waking up and not being able to go to sleep doesn't just motherfucking happen!! I don't care what the reason is, you get paid a shit ton of money, you went to school for 2390239 years, find out why, pretty please? I can do my own guessing just by researching sleeplessness on the internets! I need it to stop and in order to do that, I have to find out why it is happening.

I am not grateful to have good bone density tests, "for someone who has had as much chemo and steroids and radiation as you have." What does that mean? On one hand it says NORMAL on it, but on another, you say that my back is weak from all the steroids, etc. That I should be careful so I don't fracture my back. Let's see. I asked you over a year ago about adding a med to my personal pharmacy for bone density. You blew me off. I'm cured, so who cares if I can barely move?

I am not grateful to have excellent pulmonary function tests "for someone who has had as much chemo and steroids and radiation as you have." Um. Jiggafuckwhat? Even just the 'fit test' at my gym shows reduced cardio function in a little over a year. I tell you I'm out of breath quite a bit, but who cares? I'm alive, right?

My magnesium is low, but what's new? It's not low enough to need an IV, so move on. Minor blip.

My immune system is still low, but what's new? It's not low enough to need an IV, so move on. Minor blip.

I cannot live on pain meds and muscle relaxers. I cannot function on these stupid anti-depressants. I cannot live on 3-4 hours of sleep. I cannot live thinking that I belong in rehab or need a month at a spa to heal myself. Or that a perfect day for me would be to sleep all day and all night. I'm basically on a vacation already. Why should I need a vacation?

I dread every day where I have to look at that huge handful of meds, anti-virals, anti-fungals, immunosuppressants, painkillers, steroids, vitamins - the daily cocktail that saves my life. They get harder and harder to swallow each day. I even take a pill solely to protect my stomach from all the other pills. I bet my liver and kidneys hate me. HATE I say.

I know it's complicated. But why do you all save people from cancer, just to blow them off once they live? To say, well, you have a little graft vs. host. You LOOK good (fuck all if I look good, I barely recognize myself in the mirror anymore). Don't tell me I look good.

I know I don't LOOK sick, but I FEEL TERRIBLE. And the only thing that makes me feel better is a handful of drugs. No one should have to take daily vicodin. No one should need two ativan to sleep. I don't feel safe taking all these meds. Something's gonna give and I don't want it to be me. I didn't come this far just to wind up completely defeated and feeling helpless.

That's soooo not my debu_style.

I hate feeling ungrateful. I am grateful for my family and friends and my life. I am grateful for my little bird speaker, who as I type this at 5am just came in bed and whispered good morning and snuggled up under the covers on this chilly Friday morning and pressed her little freckled nose up against my arm and promptly fell asleep.

How do you balance all the pain and sorrow and defeat with the true grace of God's blessings?

I want to say, "I can do this." I'm very motivated to lose weight and get fitter and feel better. But I just don't feel like I can do it anymore. To have unexplained pain. To have unexplained depression. To feel so out of control over a body that is betraying me once again.

I love working out. I feel strong. I am determined. But hope is not carrying me through this one anymore.

I feel like I did when I first got diagnosed. I had symptoms. Doctors just blew me off. I felt crappy for months and months. It's really sad when you are relieved that someone finally has a diagnosis - even if it is cancer. At least you know there is a reason for feeling awful. Now there are at least 923049230 reasons for every symptom I am experiencing. I just want to fix it. I just want to be physically able to live again.

I'm ungrateful. I pray that goes away.

No assignment. I have a terrible headache now. I hate whinese! I'm just going to snuggle up to the bird-talker until the alarm goes off.

Roadtrippin Again

I'm headed to Houston today for my two-year post transplant checkup.

I've been doing really well on my eating clean / workout mission. And yes, Jeanne, you're welcome to be my weight loss bud.

Where are my Mardi Gras beads???

I can do this. I'm eating green, baby!

Your assignment today is to do some exercise. A 15 minute walk. Stretching. Sit and be fit. Whatever you are capable of doing, just do it today. Let me know about it. It's good to have some encouragement.

Also, please send some prayers and good vibes to Pam C. She's going through a whole lotta mess and needs some love. Hugs to you, chica!

Give me an amen!

Someone sent this to me in an email. I was like... Welcome to my world:

Now that food has replaced sex in my life, I can't even get into my own pants.

For the Weary

Ok. So I didn't take a sleeping pill last night and I woke up pretty much every hour on the hour. It reminds me of when I was in the hospital and they come empty your trash at 3:30am.

I'm so not diggin' this. Especially since Mom wanted me to go shopping with her today.

What is the deal? I didn't even nap yesterday. I am really tired and should just be so asleep! Especially since I'm starting to reach the end of the internets again.

Help me Obi Wan Ginobili. You're my only hope.

The Girl. She Has a Rash

Zoe has fifth disease (Parvovirus B19). It causes a slapped cheek effect on her face and she has a rash on her back and stomach.

It's very contagious, but not once she has a rash. So there's not much you can do to protect yourself from this virus except lots of hand washing. She doesn't have a fever or any other sign that she is sick. The girl is still boundless energy personified. But it says that anywhere from 10% - 60% of a school may get it if there is a breakout .

It's not serious, except say.... if you have a compromised immune system. Golly gee. I think that means me.

It can cause severe anemia and joint pain and swelling, which can last for months. Perhaps that could answer some of the achy pain I have. Who knows. I don't know if they had tested me for this before, because once you've had it, you can't get it again.

All these germ bugs just make me want to hide in bed.

I found out last night that sleeping pills make me drool. I still woke up hurting, but at least I slept most of the night.

I watched the movie Fracture today and realized I have a total crush on Ryan Gosling Um. Yummy!

I don't wanna go to rehab

I watched Celebrity Rehab With Dr. Drew the other night with Sis #1. (Um, Dr. Drew... kind of a babe I'm thinking).

While I watched these people detox I had a question. Is there a rehab for people who are forced to take multiple meds? I am stuck on these steroids because when I get off them, I have some really horrible side effects. Muscle aches, digestive issues, headaches. I counted this morning and I took 33 pills. That's just not right. I feel like they are just damaging me somehow.

So I wish maybe I could go to a rehab or a spa or something and get off of them. I hate to talk about this, but I feel really depressed when i think about how horrible I feel. There are so many things I want to be doing, but feel sooo bad and I just can't. The gym and the pool are calling me. I want to take classes, I want to read more books, and I want to go dancing. The kind of dancing until you are breathless, laughing and sweaty.

I love my daughter, but all I can think about sometimes is just going to a spa for massages and pampering. Workouts, meditation, and delicious healthy food cooked by someone else. And sleep. Real sleep. Not the tossing turning, restless wakeful sleep. Sometimes I hurt so bad I just can't sleep.

Oh well. I should start playing the lottery to pay for all of my dreams.

I'm too boring to be funny. I was updating the My Favorite Links post and some of those entries made me laugh. There were many that also made me cry. Some made me do both. I think I may have to start blogging on a regular basis again. This whinese stuff is for the birds.

I can do this. My bird talker is next door playing with the neighbor's dog and eatin' ribs.

No assignment today.

Testing 1-2-3

I'm in Houston for an appointment with my "box doc."

I also got a bone density scan and will have a pulmonary function test tomorrow morning.

So far, my bones are looking good. I was like, "That's what I like to hear!!"

And now, thanks to low-dose birth control pills, instead of having a cervix that is all dried up like a prune (sorry, I know, TMI) I have one of a much younger woman apparently. I also take that to be a good sign.

I'm missing Zoe. She gave mom a hard time about wearing pants this morning as she'd much rather wear shorts and knee socks. It's about 40 in San Antonio, so mom wasn't having it. Mom said Z was like the devil when she heard that. I said, "Welcome to my world." Thank God for daily uniforms. I can't imagine how she'd fight if we actually had to choose clothes every day.

It's kind of nice to go to MD Anderson just for check up stuff. To have hair is so different. People actually smile at you, and woah.... men were checking me out for a change. That is still weird to me. I've been invisible for so long now.

I made myself walk a lot today. I'm trying to keep moving. I'm not liking this weight gain thing. I'm fat in places I've never been fat before. So not bueno!

I'm still really achy though. I think that adds about 25 years to how old my body feels. That's gonna have to be a trend I am going to reverse! Although at least at MD Anderson they want to know *why* I'm sore. Not just guestimating that it is one of my meds. I want to know why too. Because I don't think the muscle aches are related to the herniated back discs.

Ok. Way too much medical/body talk. I'm going to go eat my soup and salad and then later I get the honor of taking my little cute niece to ballet lessons.

I can do this. I have a mule-headed, stubborn, bird-talking daughter to tame.

Your assignment today.... Ok. I'm still after you all to give blood. What I forgot to clarify is that if you are unable/ineligible to give blood, or too terribly scared to give blood, please do the following:

1. If you blog, blog about how important it is to give blood if you are eligible. Here is a list from the American Red Cross about Blood Donation Eligibility Guidelines.

2. Facts About Blood. FAQ. Blood Donation Process. Tips for a Good Donation Experience.

3. If you aren't eligible, please try to find and convince someone else to give blood. Find some big ol' dude and go hold his hand. Ask the many blogging moms to think about what it would be like if their own child needed blood, and then try to imagine the many moms all across the country with sick children who require blood or platelets. If you can't do it, there is someone who just hasn't thought about it much who needs that extra push. You are writers, so convince them!

According to the American Red Cross, every 2 seconds someone needs blood. When I was in treatment, I needed over 20 units, which is not that many for someone with leukemia or a transplant patient. That blood literally saved my life. So please help. Don't be scared if you are eligible. Needle phobia is real, but it's small in comparison to what people needing blood are going through. Be brave. You can do it!!

Here is a great list:

10 You will get free juice and cookies.
9 You will weigh less — one pint less when you leave than when you came in.
8 It's easy and convenient — it only takes about an hour and you can make the donation at a donor center, or at one of the many Red Cross mobile blood drives.
7 It's something you can spare — most people have blood to spare... yet, there is still not enough to go around.
6 Nobody can ask you to do any heavy lifting as long as you have the bandage on. You can wear it for as long as you like. It's your badge of honor.
5 You will walk a little taller afterwards — you will feel good about yourself.
4 You will be helping to ensure that blood is there when you or someone close to you may need it. Most people don't think they'll ever need blood, but many do.
3 It's something you can do on equal footing with the rich and famous — blood is something money can't buy. Only something one person can give to another.
2 You will be someone's hero — you may give a newborn, a child, a mother or a father, a brother, or a sister another chance at life. In fact, you may help save up to three lives with just one donation.
1 It's the right thing to do.

1 I don't like needles / I am scared of needles / I am afraid to give blood
Nearly everyone feels that way at first. However, most donors will tell you that you feel only a slight initial pinch, and 7-10 minutes later, you are finished and headed for the canteen. If you take the time (and courage) to make one donation, you'll wonder why you ever hesitated.
2 I am too busy
The entire process takes about an hour, and the actual blood donation time is only 7-10 minutes. If you stop to think that an hour of your time could mean a lifetime for a premature baby, someone with cancer undergoing chemotherapy, or someone who's had an accident, you might decide that you can make the time to give the gift of life.
3 No-one ever asked me… I didn't realize my blood was needed
Consider yourself asked! There is simply no other way to supply the blood needs of hospital patients but for the generous donations of people like you. Every two seconds someone in America needs blood. More than 38,000 donations are needed every day in communities across the U.S.
4 I already gave this year
You can give every 56 days. Many donors give 5 times a year!
5 I am afraid I'll get AIDS
It is not possible to get AIDS by donating blood to the American Red Cross. A new sterile needle is used for each donor and discarded afterwards.
6 My blood isn't the right type
Every type of blood is needed daily to meet patient needs. If you have a common blood type, there are many patients who need it, so it is in high demand. If you have a less common blood type, there are fewer donors available to give it, so it is in short supply.
7 I don't have any blood to spare
The average adult body has 10-12 pints of blood. Doctors say that healthy adults may give regularly because the body quickly replaces the blood you donate.
8 I don't want to feel weak afterward
Donating blood should not affect adversely a healthy adult because your body has plenty of blood. You will donate less than one pint, and your body, which constantly makes new blood, will replace the donated volume within 24 hours. Most people continue their usual activities after donating.
9 They won't want my blood (I am too old / I've had an illness)
If you have doubts, check with your physician. The qualified staff on duty at a blood drive or donor center will also review your medical history with you. There is no upper age limit to donate blood with the American Red Cross, and a great many medical conditions do not prevent you from donating blood, or may have done so only temporarily in the past.
10 I have a rare blood type, so I'll wait until there is a special need
Blood that is rare or special is almost always in short supply. There is a constant need for these blood types in order to avoid having to recruit specific blood types in a crisis.

I had to laugh because a really good friend of mine from Houston left this comment about me on a dating website as a "testimonial:"

Deb and I are friends, but we don't always see things eye to eye. One thing is, she's taller. Another thing is, I like boobs, whereas I believe she likes wieners. I'm not saying she likes YOUR wiener, I mean, she doesn't even know you. I'm not saying she dislikes it either though. So you could say she's ambivalent about your wiener, and I think that's really all a guy can ask for at the start. Deb is very smart but not in a nerdy, pretentious way, more of a 'let's use our brains to have fun' way. She's more interested in having a good time than trying to act all superior. That being said, she doesn't have much patience for ignorance. What's it like for a stupid guy talking to Deb? Imagine trying to play Tim Duncan in a game of one on one. Don't bring that sh!t in here! Ask her for IM transcripts as proof if you need it. Key words: Afro puffs. For you, Deb would be an entertaining woman to date, and a grounded, resourceful, sensual person to be involved with. Plus, she's indestructible.

Extra Assignment

It's been a while, but it's still entirely relevant. From an old post:

Your assignment today is to give blood. Find out when you last gave blood and do it again if you are eligible. And some people don't think they are eligible, but they are. Double check. Don't go on rumors or myths. And if you aren't able, find a few people who are. See if the church has a youth group that gets service awards. Volunteer at a blood drive. Blog about the need for blood. Donate to your local blood bank. It never seems important until it hits you where you live. And it's hit our family just a little too often.

With Folgers in Your Cup

Waking up lately is like waking up with the worst hangover ever. Everything hurts. You don't feel rested. There's some nausea. But mostly you think... ache, ache, ache.

It's so lame because you didn't have the fun of doing the fun stuff you do to get the hangover.

I have noticed I feel a little better after a few cups of coffee. That's a good thing.

I loved seeing all the weather reports, btw.

A friend and I took Zoe to go see the awesome Jesse Dayton and Brennen Leigh Saturday night at Sam's Burger Joint. I've decided that if I ever get married again, I want to have my reception there. It's all dark and cozy and biker and has a bunch of circular booths in it. Jesse kept calling it a supperclub. The tator tots were yummy too. I'm thinkin tots would have to be on my wedding menu.

Zoe had a good time. She put on all of her Cheetah attire, pink shirt, cheetah skirt, black tights, and cheetah shoes. She loves Jesse Dayton and, although we didn't stay too late, she did get to hear her favorite song, "Long Legged Guitar Pickin' Man." It was cute to see her singing along.

I was glad for the long weekend. Lots of sleepin going on.

Ok. I can do this. I have a pot of coffee brewing.

No assignment today. Good thoughts about MLK and what he has meant to all of us.

E What??

I'm either high as a kite or in pain. There is no in between. I forgot how much I dislike pain meds. They just knock me out. That's not any kind of quality of life.

Anyway. We were watching tv and Zoe saw a commercial for eHarmony aka ebalogny. She said, "Mom. You need that. I think you need a boyfriend again." I tried eHarmony a few years ago, but the only matches I had were in like North Dakota or Idaho. Sorry. Um. No.

I think I need a chiropractor more than I need a boyfriend. Or maybe a boyfriend who is a chiropractor.

Z's been so sweet lately. She's such a caring little girl and always is kissing my boo boos (huge bruise on my hand from a lab test). We've been snuggling a lot lately and watching fun tv shows together. I think the rest is doing me good. I took her to Taco Cabana for breakfast and just could not stop staring at her. She really is so pretty. I came home and had a "balanced" breakfast. I'm really making an effort at trying to eat healthier since I can't seem to get a workout going. At least not one that will kick my ass, you know? Lots of stretching is all so far.

My awesome dad scheduled a massage for me tomorrow though. My infrastructure is needing a little work - manicure, pedicure, the works. I've just been sleeping so much that I've neglected it lately.

I'm headed to Houston next week for an exam. Then again on the 6th of Feb for my 2 year checkup. Two years. That is so remarkable to me. I can't believe I'm still here.

I can do this. And I don't need no stinkin' eBalogny.

Your assignment today is to tell me the weather report where you are. It's cold here, in the 30's, and I love it. I love this weather and wish we had more of it. I love winter clothes.

L4/L5

I was half asleep on vicodin when the nurse called with the MRI test results.

Herniation in L4/L5. Something about microscopic surgery.

Um. No.

I am going to have a different plan of attack. I've herniated discs before. I think the issue stems from muscle loss and weight gain in my "core" from steroids. So I am thinking of joining weight watchers or something and finding a rehab place who can tell me some exercises I may do safely. I am a gym member and we have a heated pool. The last time I injured it was about a year after I initially injured it. I started swimming and that did the trick. Now that I know what the injury is, I can work around it at the gym.

I will do anything to avoid surgery.

Although I'm not sure, but it still does not explain the pain in my muscles. Could be steroids.

Regardless, I'm a cancer ass kicker. What's a few herniated discs? They aren't going to stop me!

I can do this. I'm the bird-talker's mother.

Your assignment today. I got this email from one of the mom's at Zoe's school. Your assignment is to look up your own address.

All,

A friend of mine passed along this great website as a resource to keep families safe. I hope you find it useful - I know I did.

www.FamilyWatchDog.us

When you visit this site you can enter your address and a map will pop up with your house as a small icon of a house. There will be red, blue and green dots surrounding your entire neighborhood. When you click on
these dots a picture of a criminal will appear with his or her home address and the description of the crime he or she has committed.

The best thing is that you can show your children these pictures and see how close these people live to your home or school.

This site was developed by John Walsh from Americas Most Wanted. This is another tool we can use to help us keep our kids safe.

It's a great tool, but the sad fact is that anyone can hurt a child. You don't have to be a registered sex offender to be one. Still, it was interesting (and creepy) to look up our address information.

I'm a Mess and a Half

Ok. Yay for my SA doctors. I may have some deals with them, but I know they are so sweet and caring.

I still have no idea what is going on, but at least they ran some tests today.

Low potassium
Swollen ankles (cankles even!)
Chest x-ray
Lasix (then they were like whoops... your potassium is too low for this drug, so here are horse pills)
MRI
Morphine

Does anyone else realize how hard it is to take off your bra for a chest x-ray when you have an iv in your arm and you can't bend it???

Prescriptions for muscle relaxers, Vicoden, more potassium.

I need to have tests done at MD Anderson. Pulmonary Function, MUGA and a bone density scan. I emailed them, but we will see if they actually get the appointments set for when I am there.

Can you tell I'm still high from the morphine? Either that or just overwhelmed and exhausted.

Exhausted. I could sleep for days.

I need a vacation from my vacation. I can't deal. I'm not dealing well with any of this.

Short entry. Beatlejuice is on and I've been sooo missing my bird-talker. I need some major snuggles with that child.

I miss you internets. Especially my Collins, my Emily G, my Sis' #1, 2, 3, my Linda, my Bren, my Lisa, my Pam, my Kami, my cousins, my Damien, and my Shoshie. Because you all belong to me. LOL.

AND WHERE ON EARTH ARE THE ELVIS PARTY PICTURES? HUH? HUH??

I think my doctor is a psychic

I'm just really tired of my doctors havin' a guess at what is ailin' me.

Well it could be x.
Or it could be y.
Or even maybe z.
Or perhaps it's x, z and 1, 2, 3.
Most likely it's a side effect of your meds.

So I'm going to have you do this test that you felt you might need, (which is not related to the pain you're in) but other than that, I'm basically going to do nothing and you are just stuck having this terrible pain for the rest of your life. And you should be grateful that you even have a life.

[aside]
Yeah. I'm glad to be alive. I'm thrilled. I'm lucky. Most of all I'm blessed. But you know what? Why should I have to be grateful for it every millisecond of every day? It's like when you have a crappy job, but your boss makes you feel like you should just shut up because there were lay-offs and you are just LUCKY to have this job. You have to grovel and suck it up and be made to feel like you are stuck forever with this crappy job just because life is tough and it's hard to find a job... any job.

Well that's how I feel. I'm glad to be alive. I am. But if I have to be in this pain for the rest of my life, what good is being alive if you can't sleep from the pain and you can't walk or sit without pain? Should I just become a pain killer junkie? Take drugs for it 24/7?

I WANT TO KNOW WHAT IS CAUSING THE PAIN. SPECIFICS HERE PEOPLE!!

I don't want to guess-timate at what is wrong. Hell. I can do that myself.
[aside over]

Are there tests for these guesses?? Can we find out something for SURE? If it's the meds, can we actually *try* to change them or fix it? Yes, you talk about what you know and what you think it is, but if you don't do anything, I'm basically paying a freaking fortune for you to play doctor. DO SOMETHING!!!

This is kind of like when I got diagnosed in the first place. It basically went like this.

Me: I feel like crap. I feel like my immune system is basically saying 'fuck you' right now.

Doc: I think you're sick. Let's give you some antibiotics, do some bloodwork, and then see.

Me: But this doesn't feel like just your average infection. I'm really feeling superbad.

Doc: Well call in a few days if you aren't feeling better. Just take the antibiotics; I'm sure you will feel better in a day or two.

This was Wednesday. On Friday I went to the suburb ER, transferred over to MD Anderson when they found out I had leukemia, and 3 days later I was starting my chemo.

Monday. My Doc's office calls: Ms. Deb_u_sick, can you come back into our office? We just got your labs back.

Me: Lemme guess. My white count is crazy high. Because right now I'm at a cancer hospital and I'm fixin to start my chemo in an hour or two.

Doc's office: Ok. Ok. Well good luck with that.

I know doctors aren't perfect. But I'm really aggravated about this. This pain is unacceptable. It's making me whine. It's making me limp. I'm going nuts from not being able to sleep well. I'm sitting here and it's excruciating. On the pain scale, I'm at about an 8; 10 being childbirth. I'm the face on the smiley face scale that would be about a 4.5.

Yes, I'm glad to have a life. I'm glad to be alive. But I can't handle this pain and I don't want to live all numbed up with drugs. It's not my debu_style.

I can do this. Although today I am not so sure.

Remind me to tell you the story about my pool-hustlin, bird-talking Zoekat.

No assignment today. Just have a good day for a Monday!

There's Too Much Pain for my Brain

I went to the doc yesterday. I just feel like something is really really wrong.

I'm just in a lot of pain. You know you're in pain when you take a Darvon AND an Ativan and you still hurt. It is just in my muscles and my bones. I can hardly walk. I am short of breath. It hurts to even touch my muscles. Or walk up a few steps. I can't exercise. I can hardly sit. And walking is limited to a 30 minutes or less.

Dr. B here in SA told me to get another pulmonary function test. He's not sure of the cause of the pain, but there are a few possibilities. Steroid induced muscle pain, GVH of my joints/muscles, low magnesium (although it's always low - I've never had this kind of pain).

Who know. All I know is that it's making life unbearable. Which sucks because I've been trying to get out more and do stuff and meet people.

I can do this. Even if I feel craptastic. I have my bird-talker to cheer me up.

P.S. Prayers go out to my Cali-friend, Robin, who is fighting at MD Anderson. She's beautiful, and has an amazing spirit. She had pneumonia over the New Year, but is about to start some experimental drugs to combat her relapse. Her family is amazing and she has a sweet little girl and wonderful husband who need her. I'm thinking of you, chica.

Your assignment today is to send me a recipe with noodles and chicken in it... some kind of casserole maybe. Mom and Dad have a good friend who is fighting breast cancer and her husband just had surgery for colon cancer. Mom's been trying to cook up some small meals to bring to them.

Mom Gets a Technical Foul

Zoe's basketball team are all newbs. They are adorable. They try so hard. They are improving. They have great coaches. And they are just sooo cute!

But today they basically got shellacked. This team beat them 40-0. The first time they played, even though we had forfeited b/c of lack of players, they beat us 49 to 4.

Can you say unsportsmanlike behavior? This is CYO for goodness sake! Our girls barely know how to dribble or shoot, but they played against these street-ballers who know plays, can shoot 3 pointers (at age SEVEN), and fake pass and dribble like they are in college.

This is my opinion: Running up the score is just kind of an uncool thing to do. It's this unwritten rule that you just don't do that. They had their best player in three full quarters. C'mon now. They had an entire bench of girls who aren't that good and probably don't ever get as much playing time.

I actually said something to their coach after the game. This total bitchy mom / coach said after, "Well y'all could have tried to stop us!" Um, jigga WHAT? We tried to. That was our best. And we got slaughtered. They also said, "Well we *were* city champs." And "Our second string would have beat you that bad too." Hmmm. I wonder about that. Some of them are actually timid like our girls. Not aggressive ball hogs.

Ok, so our girls are learning the basics. Your girls have NO business even playing us, much less creaming us AND gloating about it. Not just once, but three times now. I hate being upset about this, but I was an athlete for so long. I want to teach my daughter about sportsmanship and loving sports. Not about feeling bad because their team isn't very good. Or getting the crap beat out of them (literally... hello ref, it's called a FOUL).

I think I need a good workout tomorrow. I'm just too aggravated about this for my own good. I think I will, however, be writing someone at the CYO and telling them that this team is so far out of our league, that it is unfair for us to play them. I mean, yesterday we squeaked a win out at 8-4. Then today.... c'mon. How is that sportsman-like?

I can do this. I'm too irritated not to.

Does anyone else have experience with this kind of rude coaching?

Snappy New Year

Thanks Collins!


My New Years Eve consists of:

Guacamole
3 Girls in a shower together*
Pizza (um .. gross)
Furniture moving
Dusting and vacuuming
NYE Live from the Lincoln Center
Karaoke
Pee Wee's Playhouse
More karaoke
Nintendo DS
High School Musical Everything
Girl talk
Goofy text messages
Spa night
Nail time!
Blockbuster run
Veggies
Jammies

*Ok... So the 3 girls are actually Zoe, her friend from school, and her cousin. Momo G is supervising the showerage.

I figured that since I was going to be in SA, and don't know many people, I'd just stay home and have some fun with Z. So we planned a par-tay!

We've got a karaoke machine and food and silliness going on. At 9pm, we are going to have sparkling grape juice.

{update}
Sparkling grape juice is disgusting. It also has 38g of sugar per serving. Never ever ever again.

Sis #2's 7-year daughter: "I like champagne. I've seen drunk people before. They are idiots."

She drank a big glass of the stuff and now says she's burping all night. And NO. It wasn't champagne, but I couldn't get them to stop saying that it was. The French would be completely aghast if this is what champagne tasted like.

I didn't get the girls to sleep, but between Zoe's whinese, and lots of "tooting" (it's funny doncha know), I did get them settled into a DVD of Over the Hedge.

It's now 10:40pm and I'm going to take a very long, very warm shower. Then I'm going to make it a Blockbuster night. I'm only a little bummed because they say what you are doing on NYE is what you do for the rest of the year. This is not a good sign for my 2008. I'm tired. Sore (and now yay --- a fever blister on my lip --- no kissing for me). Cranky. And in need of some peace and quiet. Maybe I'll meditate my way into 2008 (serenity now). At least my skin will be soft and I'll be squeaky clean. Well that and... I'm alive!!! How cool is that? I'm going into my 2nd year of my new life.

(and yes, I'm just glad to be with my parents and my daughter tonight... I'm lucky and blessed, but you all know this already)

I wish you all much peace, love, good health in 2008.

I can do this. Because it's a Happy New Year.

Your assignment today is to vow to never drink sparkling grape juice. Who's with me?

And tonight, I also prayed. Prayed for the many loved ones we lost this past year. I miss you all... every single day.

Spiderman is my Hero

turn your volume down if you're at work.

It Has Been A Merry Merry

for now... just pictures.

The Dating Game

I'm interested in dating again (although not in Houston, Mr. Lonelyman4utolurve.)

Yah. I had cancer. So what?

1. Yes. It's *whispers* cancer. But I'm almost 2 years in remission. Don't act like I'm on my deathbed. You too could be struck by a catastrophic illness at any time. Or just get hit by a bus or croak from a stroke. *sing it gospel* No one is promised a tomorrow. Life is short. That which does not kill you makes you want to kill the person that came up with that saying.

2. I didn't have aborted fetuses transplanted into me. They are stem cells. Yes. I'm Catholic. No. not related to the controversy. And definitely no, am I not going to debate you on it. I don't even want to fucking talk about it, much less hear your theories.

3. Don't ask about the personal details of my hair loss. Have some finesse. I'll tell you if I want to.

4. Um. It wasn't my fault.

5. Yes, I know I'm a) unemployed b) on disability c) 40 d) a single mom e) living at home with my folks f) charming. Thanks for the reminder, jackhole. I'd trade all of it to go back to my old, boring job reading about mercury and PCB contamination in about .0000002 milliseconds. No, I don't want or need you to "take care" of my womanly desires. And no, I'm not going to talk about it to YOU!

6. No. The long hair pictures are old. Because I see myself like that. I refuse to acknowledge that I'm different because I remember who I was. (I actually was someone who loved/lived/laughed before leukemia slowed my roll). I have curly hair now. Yes. No. Don't ask. No more pictures for you, soup nazi.

7. Forgive me if I'm tired of talking about it to you. I'm tired of telling my "story" over and over to the random dudes of the internets that love me and want me.

Because [whinese] it's like going on a job interview that you know you aren't going to get but really want. And sometimes, just sometimes, you wish you could just not tell them. But you need to. It's kind of a big issue and splains why I am in situation a, b, e above.

Tonight was a perfect example of that. He found me witty and cute and sexy and kind (yeah, fuckers, I can be all of those), and I really wanted to just skip the whole... cancer thing. I wanted to be me again. The girl with the straight, long hair with a little sass; a little snark and a whole lot of deb_u_taunt. The mom's night out ass-shaker.

So we talked for almost an hour and a half on the phone (after about an hour online). And I could tell he really was digging me. He's a respectful person and a total sweetheart. Simpatico, yanno?

And then.. and then... I had to tell him because he asked one of the invariable questions that lead to this answer.

And I couldn't believe it, but I had tears in my eyes. I didn't want to tell him. I didn't want to ruin the connectedness I was feeling with him. But I knew I had to. It hurt to even say it.

And I felt terrible for dropping this giant relationship-killing bombo on him. But as I say, "it is what it is."

That. Is. Exactly. What. He said.

He said he will call me. Not to worry about it. But I could hear the familiar disappointment in his voice. After all, online, I'm peaches. Not so much in person anymore.

I miss the old me. I'm sick of cancer. I know you all are sick of me talking about it. But damn, I'm not getting past it when it comes to finding someone who can realize that it's not the end of me. That it's not how I define myself. I still have a Bit o' the Taunt in me.

[/whinese] Because there's no crying in cancer ass kicking.

He called. He's the one that's peaches!

I think maybe even Jesus would laugh...

I actually sent 2 of these out as my cards one year.

Just When You Think You've Seen It All

Zoe's team got beaten about 22-0 yesterday, but they are starting to show some spunk as scrappers. We've all said that if they are too timid to shoot, the least they can do is get in there and steal the ball or mess up the other team's dribbling or shots. I still am the loudest mom out there. I feel kind of embarrassed, but it is so much fun to watch them. Zoe's really had a great time.

I have no idea why, but my hip still hurts from where I had my last bone marrow biopsy. It's either that or my bones ache in the cold? I had to take some Darvon yesterday, but I don't think it is the right type of painkiller for that type of pain. I'm not diggin this. I think it's time to see the doc.

Anyway, so I couldn't sleep last night. And I'm flipping channels. I couldn't believe it, but I saw an infomercial for of all things... (sorry Dad)... erotic toys. Seriously, these two women were discussing all the different "toys," and their features just like they were talking about Susan Somer's jewelry or a food chopper dicer slicer. They had them turned on and pointed out how *gulp* they exactly work. I was infinitely glad that even though they demonstrated them, they didn't have a test model!!! Infomercials!!! Lots of exclamation points even!!!

I can do this. I'm starting to realize there are so many more things in life for me to see. I may not want to, but it keeps life interesting to say the least.

Your assignment today is to slow down and enjoy the season. I have seen a lot of people talk about how stressful it all is. Stop just enjoy yourselves and stop to remember what is important. Quit with the road rage. Skip the mall and shop online. Don't fret when you have to wait. Send gift cards. Eat a little something yummy and don't worry about your waistline for once. Go for a nice walk. Spend time with someone who you know will appreciate the company. You know what I mean. Appreciate your loved ones and stop stressing about everything.

And just an fyi, some of you cuties are going to get your Christmas cards a little late this year (maybe). I've been having a hard time sitting, so it's kind of difficult to get them all written out. Also, I know I am still missing some addresses. I'm working on it :)

Love to y'all!!

Merry Elfmas

Zoe and I are watching Scrooged. I'm trying to introduce her to movies that aren't new Disney crap or High School Musical. So we've watched Home Alone, Beatlejuice, and Pee Wee's Big Adventure. I forgot how awesome those movies were. I also want her to see The Christmas Story.

What were some of yours??

Ok. Back to the movie. Here's my little elf. Dressed for outside.

(this cold is still kickin' my butt!)

Mother Nature Must Be Mad

I have a bad cold now. I've been sleeping as much as I can. I probably got it when I took Zoe and a friend to the Riverwalk and the Rivercenter Mall on Saturday. It was kind of crowded, but we really had such a great time.

The girls were trying out toys, trying on lotion and lipgloss (huh... Lancome - $17.99 for a LIPGLOSS). They also spent at least an hour in Brookstone trying out the massage chairs. It was sweet and kind of like having twins. Exhausting, but kind of makes me wish Zoe had a sister her age.

I hope this cold doesn't turn into something worse.

Anyway, I am going to go have some soup.

I can do this. I ain't gonna die from some damn cold.

Miss you internets. No assignment today except to STAY WARM!

P.S. One of my favorite sites Shoebuy.com has $15 off if you purchase $50 or more. Free shipping and they don't charge tax.

Team Zoe... made me proud

Zoe and I attended the Team Captain Awards Ceremony for the Light the Night San Antonio walk. Our city raised over $580,000. How amazing is that??

Zoe did some artwork for the awards and they did a big presentation slide of it. I'll have to get a scan of it. It was very very cute. I was so proud of her. She stood up there with her award and got her picture taken in one of her "fancy" dresses. Afterwards I took her to our favorite Chinese food restaurant. She took some pictures of me too.

I couldn't believe how long my hair is compared to last year.

Don't you dig the light saber growing out of my head?

See the shortie-do?

Rib eating monster!

Zoe's team played again today. She did much better as she seems to sort of get it a little better now. It probably helped that her team didn't play ghetto fabulous city champ boy wanna bes. The team she played yesterday is just way too good. The girl that handles the ball plays just like a little boy. She can dribble without looking and fake-pass. She also can drive the lane and rebound. They played our other team today and beat them 18-2. I'm glad I'm not competitive and I'm trying to teach Zoe just to have fun and try her best. I think she just likes playing with her other little friends.

After the game Zoe and I went to Chilis where she polished off a basket of ribs. It was pretty awesome to watch. I had to take a video. It just really doesn't compare to the real thing though.

I got some funny cards for Christmas, but realized that many of my addresses are in my Outlook. Well, when I got my new laptop, Laplink didn't transfer that program over (my new one has Vista... pffffttt). So I'm not sure if I have many of y'all's addresses. My old laptop battery is kaput so I'm going to take it to the shop to see if it's just the battery. It works well, but the battery is just out. It's either that or the power cord. Who knows.

Anyway, long story...short. I'd love to send my friends cards this year. Please email me your addresses to debsterc(at)earthlink(dot)net.

Glad to have ya back, Kami K. Hope all of y'all are doing well.

I can do this. I'm hanging out with the bird-talking, rib-eating monster.

Your assignment today, Send a girl your address. (esp Annie and Katie H... I can't believe we were so rude and didn't didn't mail back!) We love Christmas/Hanukkah cards.

It's called a WEEKEND!!

Zoe had a friend spend the night last night. They two are officially now named "The Crazy Rib-eating monsters." I took them to a place called Tom's ribs and they chowed down. I think they ate a rack of baby back ribs between them. Even the waiter was impressed.

I woke up early, but was just online reading when I hear stirrings in the other room. IT'S 7 IN THE MORNING!!!

Why do kids do this. It's like pulling teeth to get them out of bed during the school week, but on the weekends, they are gung ho!!

GO BACK TO BED. I am!

First Zoe basketball game is today. Will have a report later on. This should be fun! I think Santa may bring Zoe a basketball goal. Anyone have one they want to get rid of? Any experience with buying a good one?

I can do this. I'm hiding in the dark from the Crazy Rib-eating Monsters!

Your assignment today is to tell me what foods you or your kids go nuts for. Zoe had never eaten ribs, but it is her friend's favorite food. Now it is Zoe's as well.

I can't believe it's December already. I really can't!

P.S. Great movie. Highly recommend Freedom Writers. I really had no desire to see this movie, but it was incredible. It really was. On DVD now.

We Love You, Allison!

Zoe's favorite singer: Allison Sattinger...

I went to Tavern in the Gruene last night to go see Jesse Dayton and Brennen Leigh. It was hosted by one of my favorites, Ray Wylie Hubbard. I was so psyched because I won tickets from KNBT. They were AWESOME!! It made me really want to move back to Austin. I miss my live music and really would love for Zoe to be able to see more of it (in a non-smoky environment!!). Jesse just put out a new CD and I listened to it last night and this morning. It is great. I love that kind of music. A mix of rockabilly, country, and Texasy. Apparently it's been labeled "turbo country."

I downloaded a few new CDs from iTunes yesterday too. Some old Elvis Costello, some Santana and this singer Sufjan Stevens (heard him from the great soundtrack from Showtime's Weeds).

Here is a trailer from Jesse D.

I can do this. I've got music on my mind.

Your assignment today is to recommend some new music for my wonderful iPod.

Avoidance Behavior

Sleeping. A lot lately.

While I'm very glad I got the clean biopsy results, I am still sore from the biopsy. My left hip bone hurts and I'm just so tired of going to the doctors only for them not to do anything. I'm sore all the way down my leg. I wish someone could invent a painkiller that doesn't make you loopy or sleepy.

Zoe's doing great. The weather is gorgeous and she's been playing a lot. It was so cool to see my family at Thanksgiving.

Ok. We're off to play. Z's got basketball practice tonight.

I can do this. It's almost Christmas!

Because

....every day should be Thanksgiving.

I woke up early this morning. Way too early for a non-school day. And I thought I'd get up and write something really prophetic. Maybe do the typical "I'm Thankful for" post or tell you to go play touch football outside like the Kennedys. Ask what food you all will be serving or eating. But then, I just got a little sleepy and decided to instead simply wish you a warm and safe holiday today.

With love,
Debutaunt

I can do this. Because every day is Thanksgiving for me. No, not that I eat so much food that my belly hurts and I have to unzip my pants, but because I'm just damn glad to be here.

Your assignment today is to accept this debu_hug. Thank you all for just sticking around. I miss yer blog, Dallas K. Do one somewhere else on the sly so I can check in on you! And Sis #2, we will miss you big time today. I know you have company, but man... it won't be the same without you. And your see-food.

We're playing bask-et-ballllllll

First day of basketball practice for Zoester. Her team decided that they want to be called the Red Hots! They were totally cute. And one of the player's grandfather volunteered to be the coach. He was so patient among the ruckus and the girls actually listened.

It was neat to be back in the gym. I played on and off all the way through college. I totally sucked, but I liked playing.

I hope Zoe enjoys playing. She said it was way more fun than soccer. I think it was because her little school friends are all on her team.

I've been doing pretty well. Lots of being outside and walking. I still am having GVH issues on and off. I might actually try to fix my hair and take some new pictures because I finally... after about FIVE years... got new glasses. It's awesome to be able to see so well. Zoe says they are cool. That's all I needed to hear.

Ok, apparently I am the best mom ever because I bought Zoe this toothbrush called ToothTunes and it plays some song by this High School Musical girl when you brush your teeth.

I can do this. I'm the "GREATEST MOM EVER!!' (well at least at this moment)

Your assignment today: Remember when you were little and you used to just play? Well that was what it was like today at the gym. Didn't most of you play some kind of sport when you were little? Swim team? Soccer? Track? Well the holidays are coming up, why don't you just go out and play?

Cartwheels

I'd be doing cartwheels, but my hipbones are still too sore.

Clean biopsy report. Wowweewoowee!

Waiting on a Phone Call

Bone marrow biopsy results. Apparently they are in, but someone needs to phone me about them. I've been trying not to think about them much. Especially since I have had several dreams about relapse and dying. A few nights ago, I was up for about 2 hours at 4am thinking about how my will is not completed. There were a few minor changes, but we had never finalized it.

I think it was because Zoe was talking about what would happen to her if I died. I don't know why that came up, but she was under the impression that she would move to her fathers. Now I know that man loves her more than life itself, but if I die, Z will be living in Houston with my Sis #1. She will spend the summers with her dad like she does now, but Sis #1 would be her guardian. Also, this is really important to me because Sis #2 lives in Houston as well and Zoe has always been so close to my siblings - and especially close with her Houston cousins.

Her dad lives in a small town in upstate New York. It's a fun place for her to visit, and I like her dad's new wife, but I will never get the memory out of my head of all the young 13 and 14 year old moms walking on the main street pushing their baby carriages. My young stepdaughter's friends flirting with her dad. It didn't seem as if many of the children there go to college or even dream of going to college. I don't know, I just have much higher aspirations for Zoe. I want her to have every option open to her. I don't want her to grow up to be some kind of hoochie. Or to think that drugs and smoking aren't a big deal.

Anyway, I've been considering going to a counselor to figure out what is going on in my head. Perhaps I just should get back to some serious blogging here. Lately it's just been "hi/bye." I really need to write it out and then I bet I'd sleep like a baby.

Other than that, I've been feeling pretty good. A little sore from the mom/kid soccer scrimmage (the Moms won! Woo).

Ok. Off to get Zoe from school. Missing you internets.

I can do this. I'm almost 2 years in remission.

Your assignment today is to head over to Big Pink Cookie and say "hi" to the awesome Christine. She's fixin to have some surgery and could use a good word. She was such a great friend to me when I was sick, and her mom made me the most adorable blanket that has a crown and says, "Queen of the Universe." Get well Christine!!! We love you!

Bill Payin

Juggling bills today. What to pay, what to pay.

I'm around - just watching way too much tv. Making my way through Heroes. Recovering from the biopsy (I had a way way rookie - ouch!)

Zoe is well. Cute as can be. Had to break the news to her that she couldn't have a puppy (her friend from school had a girl puppy she said Zoe could have). She cried and cried. It's so sad, but right now puppy is just not a good idea.

Contemplating about going to see Jesse Dayton play tonight.

Ok. Want to finish watching Heroes before I pick up the Z.

Will write like a normal deb soon - if there is such a thing.

I can do this. I have supadebpowers!

H-town!

Off for now. Got a doctor appt with my transplant team in Houston at MD Anderson. I also found out yesterday that I'm getting a bone marrow biopsy. BUGGER! I hadn't mentally prepped for it. Oh well. It is what it is.

Zoe is well. I miss her. Will write later about trick-o-treatin'. Not much else going on except getting out of the house for fall. I love this weather! It's mah-velous.

Miss you internets!

Prayers go out to Robin G who is doing some special treatment at MDA today. She's got a gorgeous little one and a great family who love her and are trying to help her kick some cancer ass. I'm hoping that perhaps I might run into them today if I can.

I can do this. I have my cancer ass kicking t-shirt on today. Hi Dad. Please give Zoe a big hug for me!

Walkin Walkin

We had a great night tonight. Zoe was so excited to see her dad and my parents joined us. I was also very pleasantly surprised that our lovely friend Day, her husband Daniel, cutie-pie daughter and friend Jill joined us. It was a nice evening and unlike last year, it wasn't 90 degrees. They started walking a little too early for me (I was still in the balloon line), but it was kind of cool that I got recognized from some people from the speech I gave at the corporate kickoff. I also saw "Team Stephen" and some other great friends from the South Texas Blood and Tissue Center (they ROCK!)

Zoe's team raised about $6,500. I think I may try for the prize of raising the most money online between November 2 and the 22nd. If we do it, we win a home entertainment system. I bet I would have to raise tens of thousands to win though. Hmmm. Never underestimate the powers of the internets.

Thank you so so much to all of our donors (esp. Illinois Deb ~ she's totally like our team sponsor ~ btw Deb, you are always welcome in ol' San Antonio).

I'm kind of glad this is all over, but now I have 9234082394 thank you notes to write.

I can do this. I have the support of the internets behind us!

Your assignment today is to tell me if you have a) purchased the BFL book and b) read any of it. I'm serious here people. I know so many of you take care of others, but I want you to put a priority on your own health as well. I especially am motivated as Zoe's dad looks exactly like he did when we met in 1995. I swear he hasn't gained a pound, has all his own hair, and hasn't aged hardly at all. As my hair grows out, I want to regain the muscle tone I have lost. I walked tonight and did it. I know I can do anything!

Yipee! Fall is Here!

Cold and windy. I love it.

Zoe is sick. She woke up with a low grade fever and sore throat/ear ache. We are headed over to the docs this afternoon to get her checked out. Cold/flu season always kind of freaks me out.

I feel pretty well, but am kind of achy - like I have the flu. Mom thinks that the 4 hour drive to Houston and then home again is just really tough on anyone. I'm supposed to head back there next week for a checkup, but I just need to postpone it a week or two. Too much going on.

The Houston walk was more of a crawl, but I was so proud to be there and walk with my sisters and some really great friends. Zoe walked with her two little girl cousins and they were cheering the whole way. "Gimme a Z. Gimme an O. Gimme an E. What's that spell?" They were also spelling out CURE. And then they threw in DOG, TACO and COOKIE.

It was cool to see so many people show up, but the walk route was kind of urban jungle and the congestion was obvious. When we walk in San Antonio, it is really moving because you can see everyone the whole time. The Houston walk walked around the block and on a sidewalk. We actually walked past a few bus stops.

I'm looking forward to the walk this weekend. They walk in the Sunken Gardens and through Brackenridge Park. It's really pretty. We've really worked hard on the San Antonio team and are now over our $3,002 goal. Team Zoe San Antonio is now at $3,257. That is pretty amazing. The power of the internets is ginourmous.

For those interested in the Body for Life Challenge, I think the first step is to buy the Book, Body for Life or Body for Life for Women. I am going to be digging mine out again because I have totally fallen off the wagon. I feel like my body is craving more protein.

Ok. Stuff to do.

I can do this. I harness the power of the Z-O-E!!

Your assignment today is to think of one goal you'd like to achieve. It doesn't have to be New Years to accomplish a resolution. Even if it is something simple, just write it down and finish it. Start small. Don't say you want to lose 75 lbs. Just go for 5 or 10. Or just working on eating better this week. Get your veggies in. Try new recipes. Lately it seems as if so many people have just lost hope. Well seeing the little girls cheering and saying the word CURE made me realize that there is hope. That it is important to carry on in the face of adversity. I am reminding myself of that today.

Roadtrippin!

We are headed out to Houston for our Houston walk.

Wow. I checked out Zoe's San Antonio Fundraising page and we blew her goal out of the water. Amazing! She is so excited to see her cousins. Me too. I miss my Houston people!

Ok. Gotta jet.

I can do this. We are WALKIN!

Your assignment today is to wish Sis #2 a most wonderful birthday. Sis #2 has always been there for me. She was the one that took care of Z when I got sick. Wrangling up 4 kids and having a sick sister wasn't easy. She and her husband will always have my respect. I love you, Sis! You crack me up, "cheew" me up, and love and support me when I need it. I'm so proud of you for doing tai kwan do and for kicking butt. You are awesome. Love love love you!

She Shoots She Scores!!

Zoe scored FOUR goals the other day. What a little hustle-bunny. She was awesome!

We had a great time with my cousin (my Godmother) and her husband. Ok, they could not be any cooler. She is sooo pretty too. And her husband was/is in the music business and has sailed all over the world. It was cool talking about artists that I really love.

We ate at this seafood restaurant in their hotel and it was really yummy. Zoe actually wore one of her "fancy" dresses too and she looked so pretty. I swear I am going to figure out how to download photos off my camera. I just have been running and gunning so much lately to play around with it.

My Godmother's son-in-law is Jesse Dayton. He's a musician out of Austin and I downloaded one of his albums. I can't wait until he plays in San Antonio because it is totally my kind of music. I may even go see him play in Austin if I can scoot out that way!

Allright, it's time to pick up the Z at school. I'm feeling better lately too, so that makes it easier.

I can do this. I'm jammin to some Jesse!

Your assignment today is to SERIOUSLY look at doing the Body for Life challenge with me. I did it for about a month before I got sick. It was really easy and I lost 7.5 inches and gained 6 lbs of muscle in 4 weeks. The book is on sale at Amazon The used ones are like $3.30. It is more than just a workout/diet book. It really discusses how women should care about their own health as much as they would a loved one. Since I'm feeling better, I feel like I need to workout on a more regular schedule again. Let me know if you are interested, and I will create an email list & maybe a blog/forum type of thing so that we can encourage each other. I know so many of you who are moms, working chicas (and dudes :P), or caretakers. I hate to see when people get so run down taking care of others... I witnessed it many times at MD Anderson and on my old forum. Just like the airplane... put your mask on, then the kiddos around you.

So hey, why not??

Rapunzel in a Tornado

Zoe and I spent most of the morning downtown. We went to the Towers of America and wandered around up there for a few hours. I got Zoe some binoculars at Target and she was pointing everything out. The weather is getting cooler (80 vs. 90), so it makes exploring bearable. I love this time of year. More walking and bike riding. Hopefully it won't be Africa hot at soccer and we can all enjoy it.

Zoe loves the Tower. I do too. It's so breezy and cool up there, but we were wondering how these GIANT crickets got up 750 feet in the air. They were all about 2-3 inches long. Must have been stow-aways in the elevator. Then we went to lunch and came home to hang out.

Somewhere, in the middle of nowhere, my Godmother and her husband are on a train headed to SA to see us from California. I don't think I've seen her in about 25 years, but I think of her often. My mother drew a portrait of her when she was younger and it hangs on the wall outside of my bedroom. She also sent Zoe tons of Groovy Girl stuff for Christmas and sent me the Boston Legals that I had missed when I was in the hospital. I was kind of sad that all of my cousins live so far away (Hi Maui Cuz and Minnesota Cuz). I see how close our kids are to each other and it would have been nice to grow up with them. I can't wait to see her. Zoe's planning on wearing one of her "fancy" dresses to brunch.

WARNING: PUT YOUR COMPUTER ON MUTE AS THE WIND ON THIS VIDEO IS SOOOOO LOUD!!!

(I need to use my real camera. This phone doesn't work as well as the last one and the quality of the pictures aren't as sweet) But she and I had so much fun and I wanted to make sure I had some pictures.

Ok. Time to get cleaned up. We have soccer today too!

I can do this. The bird talker now has binoculars!

Your assignment today is to enjoy your Sunday. Hang out with family, enjoy a slow cup of coffee, take a nice walk or have a great workout. But it's Sunday - truly relax for a change!!

Someone recently said I was a big whiner. She was right. Lately I have been speaking way too much whinese. Not a good thing to do when you are a cancer ass kicker!

Komen! How could you?

I knew Jeanne could get down to the bottom of this!

I didn't think that Komen was the recipient of the donation from the Jingle Jugs since their wording was so vague. What a disgusting product. It's not funny. It's not cute like the singing fish. I really wanted them to be indignant and not affiliated in any way. Guess it just is all about money and marketing.

Jeanne found this photo.

Guess Komen can't discriminate against who gives them money? The whole, don't look a gift horse argument.

Shame on you. You should get a star subtracted from your Charity Navigator rating for this one!

~ For the type of person that'd buy this, there's already a device you can hang on the wall to look at a boob. It's called a mirror. - Peebert

~ Thanks S.A.E. for raising my awareness of breast cancer by offering me singing disembodied breasts displayed as a hunting trophy. I'm sending the check to your proud mothers. ~Salon.com

Clearly this will not do much business in Los Angeles......where a visit to any trendy bar on Friday night will guarantee at least 100 jiggling plastic boob sightings. (Alternate joke: If I wanted to see jiggling plastic boobs, I'd turn on MTV.)

~ ingle Jugs are clearly designed with a certain jovial-fratty-good old boy-bar vibe (and target audience) in mind; but there is something undeniably serial killer-esque about a pair of tits mounted on a wooden plaque. The gaudy red lettering on the box that declares Jingle Jugs to be "The Trophy Rack You've Always Wanted!" seems like it should be followed by "...If You Used To Torture Animals As A Child!" Indeed, the more you look at these disembodied, hyper-sexualized breasts, all trussed up for display, the creepier and more sinister the whole apparatus appears. You can almost hear the grim, knowing resignation in Horatio Caine's voice as he spies this grisly trophy on the blood-spattered wall of some psychopath's fetid underground lair. "He's a collector" he'd say, squinting. "Mounted breasts are his signature. He's sending us a message." Or, more probably, "He got his bust" (removes sunglasses) "And now he... is gonna get busted." ("WAAAAAAHHHHH!" Roll opening credits.)

But wait, there's more:

http://blogs.denverpost.com/lewis/2007/09/12/this-breast-cancer-thing-has-gone-too-far/ (story about how a strip bar owner donates $$ for breast cancer.

~ When I got the press release, I dug deep for my sense of hu­mor. All I unearthed was a heaping dose of female indignation. - Lucinda Breeding, Denton R-C on receiving a press release about Jugs Across America.

~ I'm happy that things like this exist because they provide me with really good acquaintance filters. If you own one, I'm pretty sure I don't want to know you.

I'm off to go get some anti-nausea meds!!

Why We Do What We Do

A very inspirational kiddo from SA. I couldn't help but crying looking at this beautiful boy and reading his story.

www.steventrapp.com

Steven Bennett Trapp
November 2, 1998 -- July 13, 2004

Little guy makes me think of Kadin. Hiya E!

Sorest Throat Ever

Ok. They biopsied me last Thursday; I have yet to get the results ... in the MAIL... of the tests. I have since found out that they removed one polyp and biopsied another. I've had this test done 3 times now, so why is my throat killing me? It could be a cold, or something more serious. Who knows. My voice is now deeper than Demi Moore's. And I have a puny cough.

I gave a speech last night to my dad's Knights of Columbus group. They were very receptive and sweet. I could not have been more nervous - and the room was super hot. Not a good combo. I nearly lost my voice a few times, but we did raise about $75.

We have our first fundraiser tonight at Taco Cabana. I wasn't sure who to invite, but I hope some people show up.

Did you know that October was Lupus Awareness Month? Neither did I. Thanks, Martha. While I know a few people that have Lupus, I honestly don't know much about it.

So, thanks to the internets:

Lupus is a chronic inflammatory disease that can target your joints, skin, kidneys, blood cells, heart and lungs. The great majority of people affected are women. For reasons that aren't clear, lupus develops when the immune system attacks your body's own tissues and organs.

Although lupus can affect any part of the body, most people experience symptoms in only a few organs. The most common symptoms of people with lupus are listed below. Occurrences of particular symptoms happening are listed as percentages.

* Achy joints / arthralgia (95 percent)
* Fever of more than 100 degrees F / 38 degrees C (90 percent)
* Arthritis / swollen joints (90 percent)
* Prolonged or extreme fatigue (81 percent)
* Skin Rashes (74 percent)
* Anemia (71 percent)
* Kidney Involvement (50 percent)
* Pain in the chest on deep breathing / pleurisy (45 percent)
* Butterfly-shaped rash across the cheeks and nose (42 percent)
* Sun or light sensitivity / photosensitivity (30 percent)
* Hair loss (27 percent)
* Abnormal blood clotting problems (20 percent)
* Raynaud's phenomenon / fingers turning white and/or blue in the cold (17 percent)
* Seizures (15 percent)
* Mouth or nose ulcers (12 percent)

If you have several of these symptoms, see your doctor right away.

Ok. It sounds really unfun. Treatment can include chemo. How sucky is that?

Just another reason to not buy anything pink.

Prostate Cancer Ken Marries Breast Cancer Barbie

Ken's medical benefits are about to max out so he's hookin up with his homegirl Breast Cancer Barbie.

(remember this Ken picture ... hee hee)

I left that picture big so you could see her in all her pink prissy glory.

"I'm not sure what in the world Mattel was thinking. What's with all the glamour? Is she supposed to be heading to a charity ball or something? Because clearly she doesn't look like someone who currently has breast cancer. If she did, she would look more like this:" Thanks Susan

From My Myspace:

My grandmother died of breast cancer when I was ten. I remember helping her get dressed, the ashen color of her skin, and the smell of her smoking dope for her nausea. She had suffered with it on and off for over 20 years. It was a horrible way to live and a horrible way to die.

I was diagnosed with Acute Lymphoblastic Leukemia in October 2005 and had a stem cell transplant in February 2006. I'm now currently in remission and I feel pretty lucky to be here.

So how many of you actually know what leukemia is? (it's cancer of your blood) Would you know the symptoms offhand? Did you know that September was Leukemia & Lymphoma Awareness Month? Well on October 6th, I got a signed, sealed proclamation from Governor Good Hair Rick Perry himself telling me so (after I wrote to ask him about September/ Leukemia). I didn't even see a story about it in the paper, on the news, heck, I had to search long and hard to find it online.

Maybe you didn't know about it because you are deluged with pink. The Pinking of October has become like another Holiday - Christmas decorations in September. It disgusts me.

Now don't get me wrong, I don't begrudge fundraising by any means for cancer. I hate cancer! But what I do begrudge is buying the CEO of Yoplait his 5th Ferrari or whatever. Ok. So you buy 5 yogurts. You lick the lids (gross right there) then mail them in to Yoplait. That's a 50 cent donation - woo! Uh, not really.... remember the whole 'you gotta mail them in' and the .39 cent stamp? You just in effect made an .11 cent donation. If they really cared about breast cancer, why do they make people do this? Why not just donate a percentage of the pink lid sales?

Because they know that people would be kinda pissed off if they realized just how much money Yoplait, part of General Mills, makes off this campaign. The Yoplait line alone made 1.1 BILLION dollars in profits last year. Can anyone tell me how much money they donated to Komen? It sounds like a lot, but you can't buy that kind of goodwill (oh, I guess you can); and the lust for huge profits by capitalizing on the fear of cancer... ohhhh... mastectomies... chemo... is kind of shameless don't you think? They don't make that donation, their customers feel guilty and they buy that nasty tasting yogurt (I'm an organic yochick) thinking they are helping - the money comes from the consumers. Minimum donation this year is $500k. That's a lot of nasty pink foil.

Make your donation directly to your breast cancer charity of choice. Or to someone doing a race for the cure or Avon walk or something. "Think before you pink" (http://thinkbeforeyoupink.org) Refuse to buy pink stuff before you know the facts. Do they donate ALL their pre-tax profits to the charity (like Paul Newman does). Which charity is it exactly? What are they funding? Do they cap the maximum donation? Do they keep most of the profits?

e.g. 3-M spent $500,000 marketing the biggest post it pink ribbon in Times Square. Then they make a $300,000 donation. Why is that? Am I the only one that finds that kind of sinful?

Just as a curiosity, I wonder if men would allow the Greening of January to bring awareness to prostate cancer. Everywhere you turn there's a little green ribbon and green beer or green soup or yogurt. You can buy green shorts that say, "save the boys" or "protect my privates." Shop for the cure. Buy toast for testicles. Green shoes and gum and deoderant and test cars for prostate awareness. Click on this link and a man will get a free prostate exam... only 40,000 clicks per 1 exam. Tents, coolers, umbrellas, chocolates, candy, shaving cream. Buy a Rolex and we will throw in a free green jock strap.

I feel kind of ill when I see all the pink stuff in the stores. I purposely will go out of my way not to buy any pinking October stuff. I shouldn't feel guilty. If you know someone with breast cancer... pay their electric bill, offer to drive them to treatment, mail them a letter, send out letters to Congress or to these companies to tell them that we won't be duped anymore. We are not going to mail in your disgusting licked lids for a pittance. Consolidate even 10% of the profits from pink purchases and you'd make a boatload more than what is actually donated.

We want real funding for real cures and help for those in treatment cos their ain't no magical fund that will pay your bills when you get too sick to work. We want a cure. Not a stinking pink ribbon.

My inspiration is Jeanne Sather, The Assertive Cancer Patient and my beautiful Grandmother and all my lovely friends who know exactly what I'm sayin.

Deb, the Debutaunt

I can do this. I'm Relentless for the Cure at www.teamzoe.net

Your assignment for today is to tell me about the most obscene Pinkwasher you have seen so far. What was the dumbest item found?

Since I can't say it any better...I won't

WELCOME TO CANCERLAND
A mammogram leads to a cult of pink kitsch
By Barbara Ehrenreich

Barbara Ehrenreich is a contributing editor to Harper's Magazine. Her last two essays for the magazine were the basis
for her best-selling book, Nickel and Dimed: On (Not) Getting By in America, published by Henry Holt.

En excerpt - the original is amazing:

When, my three months of chemotherapy
completed, the oncology nurse calls to congratulate
me on my "excellent blood work results," I
modestly demur. I didn't do anything, I tell her,
anything but endure--marking the days off on
the calendar, living on Protein Revolution canned
vanilla health shakes, escaping into novels and
work. Courtesy restrains me from mentioning the
fact that the tumor markers she's tested for have
little prognostic value, that there's no way to
know how many rebel cells survived chemotherapy
and may be carving out new colonies right
now. She insists I should be proud; I'm a survivor
now and entitled to recognition at the Relay for
Life being held that very evening in town.

So I show up at the middle-school track where
the relay's going on just in time for the Survivors'
March: about 100 people, including a few men,
since the funds raised will go to cancer research
in general, are marching around the track eight
to twelve abreast while a loudspeaker announces
their names and survival times and a thin line of
observers, mostly people staffing the raffle and
food booths, applauds. It could be almost any
kind of festivity, except for the distinctive stacks
of cellophane-wrapped pink Hope Bears for sale
in some of the booths. I cannot help but like the
funky small-town Gemutlichkeit of the event, especially
when the audio system strikes up that universal
anthem of solidarity, "We Are Family,"
and a few people of various ages start twisting to
the music on the gerry-rigged stage. But the money
raised is going far away, to the American Cancer
Society, which will not be asking us for our
advice on how to spend it.

I approach a woman I know from other settings,
one of our local intellectuals, as it happens, decked
out here in a pink-and-yellow survivor T-shirt and
with an American Cancer Society "survivor
medal" suspended on a purple ribbon around her
neck. "When do you date your survivorship from?"
I ask her, since the announced time, five and a
half years, seems longer than I recall. "From diagnosis
or the completion of your treatments?"

The question seems to annoy or confuse her, so
I do not press on to what I really want to ask: At
what point, in a downwardly sloping breast-cancer
career, does one put aside one's survivor regalia
and admit to being in fact a die-er? For the
dead are with us even here, though in much diminished
form. A series of paper bags, each about
the right size for a junior burger and fries, lines the
track. On them are the names of the dead, and inside
each is a candle that will be lit later, after
dark, when the actual relay race begins.

My friend introduces me to a knot of other
women in survivor gear, breast-cancer victims
all, I learn, though of course I would not use the
V-word here. "Does anyone else have trouble
with the term "survivor?" I ask, and, surprisingly,
two or three speak up. It could be "unlucky,"
one tells me; it "tempts fate," says another, shuddering
slightly. After all, the cancer can recur at
any time, either in the breast or in some more
strategic site. No one brings up my own objection
to the term, though: that the mindless triumphalism
of "survivorhood" denigrates the dead
and the dying. Did we who live "fight" harder
than those who've died? Can we claim to be
"braver,' better, people than the dead? And why
is there no room in this cult for some gracious acceptance
of death, when the time comes, which
it surely will, through cancer or some other
misfortune?

No, this is not my sisterhood. For me at least,
breast cancer will never be a source of identity or
pride. As my dying correspondent Gerri wrote: "IT
IS NOT O.K.!" What it is, along with cancer
generally or any slow and painful way of dying, is
an abomination, and, to the extent that it's manmade,
also a crime. This is the one great truth that
I bring out of the breast-cancer experience, which
did not, I can now report, make me prettier or
stronger, more feminine or spiritual--only more
deeply angry. What sustained me through the
"treatments" is a purifying rage, a resolve, framed
in the sleepless nights of chemotherapy, to see the
last polluter, along with, say, the last smug healthinsurance
operative, strangled with the last pink
ribbon. Cancer or no cancer, I will not live that
long of course. But I know this much right now
for sure: I will not go into that last good night with
a teddy bear tucked under my arm. --

Achoooooooooo

I'm sick. I've had a low grade fever on and off for 2 days now.

My throat hurts, but I don't know if it is from the endoscopy or just a sore throat.

I'm tired of fundraising. It's not important to anyone unless it's important to anyone. No one wants to walk with us - except Zoe's dad who is going to fly down to see her. I'm so happy for her because she gets to see him, but she's sad that not one of her school friends from Houston or San Antonio has signed up to walk with us. I don't think I'm going to do this anymore. No one really cares unless it hits you right where it counts - your own home.

I sent an email to her principal, the one who left, and didn't even get a courtesy reply. I've asked several of the Brownie moms if they are interested. I even handed out postcards with information to lots of people, but only the ones who read my blog have donated or signed up to walk. Total strangers care more than people that actually know us.

I'm sick of seeing pink. Every commercial is for breast cancer awareness. Just buy this $2,000 diamond ring and we will throw in a pink sparkle breast cancer pin. And our company is donating $5000 to the Komen Foundation.... even though we just spent $20,000 on advertising. Ok. Not really, but youknowwhatImean.

Another family friend just got a dx of breast cancer and is going to have a mastectomy and maybe chemo. I hate cancer. I need a hobby.

I know I should try to stay positive about fundraising, but I feel like the crazy Aunt at the family reunion. I went to Zoe's school carnival last night and pretty much didn't talk to anyone. They all say hi, but no one says... oh hey, there's Deb, let me pull up a chair and / or hang out with her. It's because I fundraise. I'm always asking people for blood or money or signing up for this or that. I'm tired of it. I'm tired of feeling like people want to dodge me. I just want to be me again. Someone who is dorky and funny and actually gets phone calls to go do stuff. Now I'm just Zoe's mom, you know... the one who had cancer and now asks for money.

Fuck. I don't care if you donate or not. I just don't want my daughter to feel like I do. To feel like the unwelcome guest. To feel like she can't change the world. Seriously. NOT ONE FRIEND has signed up for her team. I have had to beg the ones who did (and they are my dear friends). She keeps asking me why her friends haven't signed up. Well I'm not going to ask anymore. If it is just she and her dad and my mom and I, that will have to be it. I'm alive. I'm going to fucking walk.

I don't want to feel like this anymore.

Yawnies

Uneventful.

I just woke up after coming home and sleeping all day. I came home, ate 2 bagels with cream cheese and some peach preserves, milk, watched some dvds, and then slept like the dead.

The royal treatment showed 2 polyps; one named George (Clooney) and the other ODB.

The prep for the colonoscopy is exactly just like a day in the life of someone with gut GVH. An extreme day, but now you see what it's like to live with GVH. Very unfun.

I don't know what the next steps are. If they told me, I don't remember. I think they said something about mailing me a letter. How fun is that?

And why is it that all my GI guys are always GREAT LOOKING? Welcome to my esophogus... and this time my nether regions, Mr. Hot Doctor. I skipped the fake tattoo, but it made me laugh. I think I was too hungry to actually be scared.

George and ODB look so harmless. Let's hope so.

I'm still tired. And I can't drive to go return my mail dvds for something interesting to watch.

I can do this. I have George and ODB by my side... ok... by my insides, but still.

Dawn, that comment made me snort... for real!

Woo!

Hey... I'm multitasking...

I'm cleaning my colon and my laundry at the same time.

As I suspected, this stupid colon prep is pretty much what it's like to have GVH in your guts. Nausea. Cramping. The Dukes. Yep.

I get to drink the watery nasty stuff at 6pm. I'm thinking I'm going to have the cleanest colon in Texas! If not the United States!

P.S.sssssssss

Ok. For my "royal treatment," I was thinking that I might put a fake tattoo on my bootie that says something funny.

Any suggestions?

Happy Thursday

So. My thyroid, she good. My bloodwork for the first time since October 2005 was in the "normal" range (this was huge!). But my doc wants me to have the royal treatment.

Now what, you ask, exactly is the "royal treatment."

Well it's a full blown procedure to see the inside of all of my guts. Yes, ladies and gentlemen, I get to have not just an endoscopy, but a colonoscopy. Yay!

I'm not really skeered about any of it, except for the "prep" for the inside view of my colon. I've heard it's awful, although Sis #1 was like... what, that's probably a typical day for you (with the GVH I have).

"Be prepared to spend most of the day before your test on the toilet. Bring a book." They actually say, bring a book.

I think I'd rather just watch a movie. Good thing I have a laptop. I'll just set up my own little disgusting movie theater in the can.

I've had 3 endoscopies so far, so they are welcome to "scheck" it out, but the colonoscopy... eeks. I'm at the point where if someone goes near there, yeah... i want to be sedated.

Ok. Enough of this grossness. Been working on Team Zoe stuff. Houston peoples, check out www.teamzoe.net as we added a Houston fundraiser. Email me if you'd like the flyer.

Waiting

Zoe kicked butt in soccer today. Sis #3 and Bro #3 and Zoe's cousin got to see her play. It was hot as Hades, but the kids all were pretty awesome. I'm so glad they only practice once a week and one game a week. I couldn't stand to be outside much longer. She is so cute. I'm so proud of her.

I sang her to sleep tonight. She's the only person I will sing to. We watched a little tv tonight together and she had me rub her back. I miss simple stuff like that. I miss not worrying about stuff like meds, insurance, how I feel, doctors appointments... It was an easier life then, but it still was hard. Just in a different kind of way.

I still feel gross. I'm running low on a bunch of my meds and one of my co-pays is going to be $90. The financial aid folk at MD Anderson said they never got my fax of a form and my disability awards letter. I even spent $8 sending it and got a confirmation. I also got a letter from my Cobra administrators and they said that there is a chance my premium payment could be raised 150%. Yay for insurance. I just want to climb a mountain, stop taking my meds, and become a nomad. Dealing with all of this crap is so annoying and frustrating to me. If they got my financial aid right, I would be spending $5 for copays on all my meds. As it is, Dad picked up one for me today and it was like $46.

I have a doctor's appointment again tomorrow. This makes four Mondays in a row. Still no clue. I called to get the test results and someone said they'd call me back. They never did. This makes me a little worried as usually they just tell you right away on the phone if it's not a big deal. I had a thyroid test done and some other stomach stuff. Me no likey.

More than the stomach stuff, I feel about 800 years old. My muscles are sore in weird places - like I've done a bunch of pushups and situps. They are crampy when I wake up.

Wow, I just realized how much Whinese is in this post.

Dr. Egypt wants me to come see him in Houston in October. He's interviewing there for a fellowship position. Unfortunately, the interview is in the middle of the week and it's on a day I'm having a fundraiser at Taco Cabana. I haven't seen him in about 4 years. I really do miss him and his silly smile. I never felt like I was on some kind of interview when I was around him.

My fundraising is at a standstill. I have set up some fundraisers, but have invited no one yet. I had sent Zoe's Principal an email to see if I could send out information, but she never responded. Now, unfortunately, she has to leave to take care of a sick family member. That has got to be awful. I don't know anyone else really other than people from our church, and even then... well, they aren't even really interested. They are all so busy.

Anyway, no one is interested in walking. I'm tired of begging them to sign up, probably as much as people are tired of me asking them to sign up. I'm tired of asking for money. I swear this is probably going to be the last fundraising I do. I'll continue to volunteer for the LLS and the South Texas Blood & Tissue Center, but this fundraising is too humiliating. It's not important to anyone unless it really hits you in the home.

Can I just go to sleep and make all of this stop for a little while?

I feel kind of lonely tonight. Guess because I'm waiting on some new DVDs in the mail and there's nothing to do tonight.

I can do this. The Whinese is temporary.

No assignment. The blog is uninspired tonight.

Jeez, my writing is for crap lately. I'm needing some assignments.

Shillin

Chilling. Just waiting for some test results to come back to see if I need my guts all GI'd. So not fun to think about.

Been hanging out with the Zoester. She had field day yesterday and was so cute doing the potato sack and tug-o-war thing. But my goodness it's hot. After school, we studied spelling words and watched the movie Zoom.

I've just been writing some letters and trying to figure out how Zoe will meet her goal of $3,002. She's about 1,000 bucks away. Hopefully some of the restaurant fundraisers will help. (see www.teamzoe.net for info)

Watching a movie now. I think I will be napping soon.

I can do this. I may be sleepy, but I'm here.

Your assignment today is to hang out with someone you love. Just do something fun. Go for a walk. See a movie. Or just read books. Zoe's been enjoying the book, "A Cricket in Times Square." I haven't even thought about that book for over 20 years. It's a good one.

Zoe asked me how people make babies the other day. We were in a restaurant so I left it with "the mommy and daddy make the baby."

I need to get a book or something.

My Leukemia Fightin' Hero

2007 Bike Relay

M. D. Anderson leukemia physician Charles Koller is participating in the Houston Police Department Bicycle Relay Team for the fifth time in six years to raise funds for leukemia and lymphoma research. This year, the intrepid pedalers will travel "from NASA to NASA," riding over 2,000 miles from the Johnson Space Center in Houston to the Kennedy Space Center in Cape Canaveral, Florida, in the 26th annual HPD Bicycle Relay.

.....

Since 1982, the HPD Relay Team has pedaled over 55,000 miles and raised $4 million for the Leukemia and Lymphoma Society.

Dr. Koller continues to be a productive fundraiser. So far, he has received $40,000 for this year's relay, for a grand total of $200,000 since 2002. It's never too late to help! Send your tax-deductible check, made out to the Leukemia and Lymphoma Society, to:

Charles A. Koller, M.D.
M. D. Anderson Cancer Center
1515 Holcombe Blvd., Unit 428
Houston, TX 77030-4009

Awesome. Truly.

Why You Should Sign Up on the National Bone Marrow Registry

www.marrow.org for info.

Current Clinical Use of Adult Stem Cells to Help Human Patients:

Autoimmune diseases (multiple sclerosis, lupus, juvenile and other rheumatoid arthritis)
Stroke
Immunodeficiencies, including a new treatment for severe combined immune deficiency (when used with gene therapy)
Anemia
Epstein-Barr virus infection
Corneal damage (full vision restored in most patients treated in clinical trials)
Blood and liver diseases
Osteogenesis imperfecta.
Cancer treatment (in combination with chemotherapy and/or radiation):
Brain tumors
Retinoblastoma
Ovarian cancer
Solid tumors
Testicular cancer
Multiple myeloma, leukemias
Breast cancer
Neuroblastoma
Non-Hodgkin's lymphoma
Renal cell carcinoma

Cardiac repair after heart attack (clinical trials announced Spring 2001)

Type I diabetes (not stem cells as such, but pancreatic islet cells from donors)

Cartilage and bone damage.

I was going to post the link to that information, but the link no longer works. Bummer. It was from the Catholic Bishops Conference.

Busy day. Gotta run!

Light the Night..... Boogie on Down to Macy's

Raise Easy $$$ with Macy's Shop for a Cause

What: Light the Night walkers sell $5 shopping passes that entitle the bearer to 20% off store merchandise and the chance to win a $500 shopping spree!

Where: Every Macy's Store nationwide

When: Saturday, October 13, 2007

How: Place your order for the number of passes you would like and sell them to family and friends. Return the proceeds to the Leukemia and Lymphoma Society and the money is credited to your Light the Night team. Any unsold shopping passes can be returned to the Society at no cost.

If you are interested in selling these shopping passes or want to find out more information please contact your local LLS chapter.

I'm starting off with 50!! I'm ambitious like that.

Check Yer Lymphs

So when I got sick, I went in with a bad headache and came out with Leukemia.

So why is that?

Because it's not like you can take your own blood tests. Leukemia, Lymphoma and other blood cancers are often misdiagnosed as other things because their symptoms can be misleading.

Warning Signs of Lymphoma.

Lymphoma occurs inoccuously, often so harmlessly that it takes some time before you may realize that there is anything seriously wrong. Here is a list of the common symptoms of lymphoma. But you must remember that most of these symptoms are common with many harmless conditions. You should not panic if you have any of these symptoms. Consult your doctor, and he will be able to address most of your fears and doubts.

1. Painless lumps in your neck, armpits or groin

2. Weight loss

3. Fever

4. Excessive sweating at night

5. Itchiness all over your body

6. Loss of appetite

7. A feeling of weakness

8. Breathlessness along with swelling of the face and neck

Please check out that site if you want a more detailed explanation of those symptoms.

I can do this. Although I'm kind of sucking at writing a press release.

Your assignment today is to check your nodes.

Ok. A "pink" shirt I can support

If you are going to support breast cancer and walk or fundraise, here's the shirt you should be wearing:

(if you can't read it - it says Save 2nd Base)

Inspired by Kelly Rooney.

Our Inspiration

Kelly Rooney is the mother of 5 terrific kids, and the wife of Sean Rooney of the Pittsburgh Steelers family. She is Erin Dugery’s sister. She is Kelly Day’s friend.

Kelly battled breast cancer for three years, and underwent countless surgeries, rounds of chemo, and radiation. What set Kelly apart from most patients is that she knew cancer couldn’t take away laughter.

Kel was funny. She had a quick wit, loud laugh, and endearing wink. She taught those around her to “lighten up.”

Kelly was mischievous…she was no saint and never set out to be. She was utterly human, with a big, giant heart.

Kelly passed away on July 11, 2006 at the age of 43. She got the last laugh.

Kelly is the creator of the smiles that are provided by these t-shirts.

Why am I not the thinnest woman on Earth?

Dr. appt. on Monday. He said that I need off the steroids asap. That there are a few other drugs that will help with the graft vs. host.

In the meantime, I'm sick as a dog. I'm now a hermit. I also will be getting a lovely upper and lower GI and an endoscopy sometime in the near future.

I am done talking about this. It's just very unfun.

Zoe was crying yesterday because no one has signed up to join her Team Zoe team. There are only 3 people on her team so far. I've been too sick to go ask her Principal if the school could be a part of the Light the Night walk. Oh well. I'll keep trying.

I know not everyone is comfortable asking for donations, but I would be happy just to have people walk with us or buy the Team Zoe t-shirts (Zoe just got her new one and it is super cute!)

I know that a few of you have also bought Debutaunt shirts, but for some reason it's not showing up in my sales report. Which stinks because the $5 goes directly to me (obviously I'm not getting rich off of this - lol) Let me know if you bought one, so I can ask Cafepress what the dealio is.

Ok. Cleaning my room today since I'm being a hermit.

I can do this. I get to expose my innerds soon.

You assignment today is to sign up on Team Zoe if you are going to walk with us. Even if you only raise $1, we'd love to see you.

When I got sick, I didn't have any typical symptoms of Leukemia. Sometimes it is hard to know because the symptoms are so similar to other disorders. I had a headache, but it was a sinus infection - and that is what saved my life - they did a blood test.

Signs and Symptoms of Leukemia

The first indications of leukemia often are nonspecific or vague. They may occur with other cancerous as well as noncancerous disorders. Although signs and symptoms vary for each type of leukemia, there are some general features. Broad symptoms of leukemia may include:

Fatigue
Malaise (vague feeling of bodily discomfort)
Abnormal bleeding
Excessive bruising
Weakness
Reduced exercise tolerance
Weight loss
Bone or joint pain
Infection and fever
Abdominal pain or "fullness"
Enlarged spleen, lymph nodes, and liver

Why I do what I do

Thanks Bren/Cody's Mom.

I can do this. I have a doctor's apointment today to try to fix this mess I am.

I love you!

Sorry for the quick entry, but Happy High Holy days to my Jewish friends.

I'm going to google, so I can post what they are and what they mean.

For now, I have to bathe. It was Africa hot at Zoe's soccer game so I stink the stink of a thousand stinks. But she was so cute and they won!

How to Break My Heart into 80 million pieces

"Mommy, am I going to get cancer?"

How to Make Me Have a Mini-stroke

Well who cares if I'm going to cap out the max on my insurance. According the new Cobra administrators, my eligibility is up November 10, 2007.

Um. It's Oct 2008. Seriously, right? Right? That's what they've said before... RIGHT!!!!!!???? WTF... PANIC PANIC PANIC.

Mad scramble to my room to get the letter stating that.

Yes. That's what it says. Several times. The "old" Cobra administrators said October 2008 in a LETTER.

Apparently the old crew passed on no info, so the new crew was about to gimme the boot. I have to fax stuff ASAP to the new crew.

Whew.

Maybe I'll advertise for a Canadian spouse like The Assertive Cancer Patient.

I'm tired of forums an some forum people. I'm tired of debating. Marketing people and corporations that make massive profits from "cause" marketing are just immoral. It's greedy and sinful, IMO.

Yeah. They donate money for stuff, but they also act like we aren't supposed to realize we are buying the CEOs lots of new shiny things.

Besides Yoplait may have bovine hormones in it. If you want to have some goodwill, go back to nature!

I'm a Stoneybrook Farms or Horizon kind of yogurt girl.

For Now

I would love to get an official tag and one with some HTML code. So until then, this will have to do.

Thank you Chili's!

Not only for the perfect hamburger I got yesterday, but for donating 100% of your profits on September 24th to St. Jude's Children's Hospital. Also, you can purchase a pepper drawing and add the donation on to your meal. You color the pepper and they post them up on the walls of the restaurant.

Of course I colored mine and it said www.teamzoe.net.

Don't forget to sign up to walk with us in Houston or San Antonio. I don't have a team in Dallas yet, but if you are interested in creating a Team Zoe Dallas, let me know. Thanks to Pam C for creating Team Zoe Charlotte, NC. If you are in that area, you can join Pam on her walk team.

Ok. Busy day. I can do this. I"m Sixbucked up!

Ok. This made me nauseated

Lifetime Maximum

Initial Amount: $2,000,000.00
Applied Amount: $750,792.41
Remaining Amount: $1,249,207.59

You may hate insurance companies and big pharma, but I'm almost a million dollar girl. Although when I view all claims, apparently I'm at $1,818,980.39.

My brain hurts today. I'm going to watch some mindless tv now.

I'm Frustrated Today

Go Michelle Go!!

Support my friend, Michelle, in her Komen Race! She's such an awesome chick.

Ok. So I will post your link to your "pink" if you like. Send it to me via email! I'd rather people donate directly to fund breast cancer research vs. buying some stupid yogurt (besides, organic yogurt is soooo much better!) Those commercials licking the lids gross me out. I'm glad my job isn't to collect them. I would have a panic attack thinking about all that saliva. At least this year they are donating over a million. Keep talking so that these vendors get the idea that they can't exploit our fear as women of getting breast cancer. If they get the good press, they should be required to donate much more than a small percentage!!!

There are way too many things frustrating me today. I am missing my sisters. And my mom.

That is all.

Sleepy

Dad. Well Dad is the best. My beloved laptop power source is crapping out, I woke up to a brand new Toshiba Satellite A215. Um. It's FINE!!! (although I'm not used to the keyboard and keep mis-typing). It's so James Bond. It's got a fingerprint scanner on it. I'm also allowed to be on he Dad repayment plan. Monthly payments to pay off this great computer. I nicknamed her Uma.

I agreed to be an honored patient at the Lone Star Circle of Life Bike Ride. I'm not quite sure what I have to do yet, but it's a pretty big deal.

I'll post more when I know more.

From their site (and partially for Leukemia Awareness Month)

Did you Know...

One out of every 20 Texans will need blood at some point of their lives.
Each year, over 30,000 new patients are diagnosed with a life-threatening disease that may be cured with a marrow transplant.
It takes eight whole blood donations to provide the effective dose of one apheresis blood donation.
Each day, an average of 17 people die while waiting for an organ.
There are over 77 organs and tissues that can be transplanted.
Each year 20 million blood components are transfused.
There are currently 87,000 people awaiting a life-saving organ transplant — 5,800 of those are in Texas!

Ok. Too busy playing to post more today. I got a little bit of sleep, but I think it's a Tylenol PM kind of night.

Seven Weeks to Go

Our walkathon is October 20th in Houston and the 27th in San Antonio. I hope that my Houston peeps can sign up to walk - even if you don't want to fundraise, we just want to see you there.

Jeanne Sather, the Assertive Cancer Patient, was my inspiration for boycotting the Pink of October. I read what she wrote and it really hit home. My dad's mom, my Grandma Jane, died of breast cancer. And I have many readers & friends who are survivors or who have had family members with breast cancer. I really think that people should just donate directly to research vs. losing part of their money to huge companies who are making ginourmous profits off the "cause."

Some facts for September Awareness Month:

Every five minutes, someone in the United States learns that he or she has leukemia, lymphoma or myeloma - that's more than 300 people every day.

Every ten minutes, an adult or child is expected to die from one of those diseases.

Leukemia is the leading cause of death by disease among children and young adults under the age of 20.

Leukemia is the most common cause of death from cancer among men under age 40 and females under 20.

Hodgin Lymphoma is one of the most curable cancers; the five-year relative survival rate is now 83 percent.

80% of myeloma cases occur after age 60; it is rarely found in individuals under age 50.

Myeloma is the most intractable of the blood cancers with survival at only 32%.

Why we raise money for the Leukemia & Lymphoma Society:

The Society's mission is to cure leukemia, lymphoma, Hodgkin's disease and myeloma and improve the quality of life of patients and their families.

It is the world's largest private organization concerned solely with funding research to find cures for blood cancers.

As a result of ongoing research, overall survival rates for leukemia have tripled in the last 40 years.

Did you know that September is Leukemia Awareness Month?

Neither does anyone else.

Probably because we are drowning in Pink as it's pre-October.

I wish they would just outright donate the money instead of playing the charade of ___% of the profits. It's such a farce to purchase a $20 item when $2 of the profit goes to breast cancer research.

So next month, I will make a donation somewhere for breast cancer. And i will refuse to purchase anything pink for October.

This month, I will ramp up my donation fundraising for the Leukemia Society. And I will ask for you all to help spread the word about Leukemia. Maybe point people my direction. I think I will blog a post a day and dedicate it to an issue people with leukemia deal with.

Until then. This is our month. Sad no one will really know it.

My New Favorite

Shoe.

I'm in love with this shoe.

When you have ginourmous feet, and you find your size, it makes you want to buy one in each color. I think I need to start playing the lottery because I could online shop all day.

If you want to walk with us on October 20th in Houston, please sign up asap :) We will be walking in San Antonio on October 27th. All the info on how to sign up is on www.teamzoe.net.

I sure hope to see you there! We got our Team Zoe t-shirts and they are cute. The printing isn't the greatest, but the quality of the shirts is really good. The Team Zoe hat looks really good. I may need to redo the png file to jpg. Anyone out there experienced with working with these types of files?

Ok. I am outtie. My SUV is parked under a tree and I got blasted with the bird poop last night. I think they think is is funny to target my car.

I can do this. I'm full of Starbucks today! (and thanks to all of you who gave me the Bucks cards for my birthday. I've already used up over $70!!!)

Your assignment today is to say hi. Even if you don't comment much. It's been quiet around here lately.

P.S. If you are looking to volunteer or to donate to something, I watched a film on these. They are hand cranked "wheelchairs" that can maneuver around rugged terrain.

Here is another site. There are a few distributors across the country, so even if you aren't in San Antonio, you might be able to find one near you. I'm kind of handy, so I am going to go with my awesome friend Linda T to go help build some.

The Need
There are an estimated 21 million people world-wide that have lost the use of their legs due to landmines, disease, accident or injury. Landmines alone kill or maim one person every twenty seconds. The need is extensive and growing

A Solution - P.E.T.
Basically, the P.E.T. is a hand-cranked wheelchair that uses pneumatic tires for use on dirt and grass areas.

How can you help?
This is a growing but daunting effort due to the great need. There are many ways to help as the many current volunteers and contributors have learned.

· Give/Raise Funds: This is always basic. It takes money to buy metal and parts, to weld, to package, to ship, and to distribute. Ask -- and you shall receive -- is the message of scripture. Be creative.

· Find People with welding, metalworking, or woodworking skills who will agree to help build P.E.T. parts. Help them with expenses--buy the metal, etc. Help them ship it to one of The P.E.T. Places.

· Find Businesses that sell or make "off the shelf" items needed for the P.E.T.s. Get them to donate or sell to you at no profit. Send the items to a P.E.T workshop.

· Talk about the P.E.T. Project. Promote. Gossip about it. Say to folks in conversation, "Our church is doing a fascinating mission project..." Tell the story.

CONTACT:
P.E.T. Inc.
P.O. Box 941
Helotes, TX 78023
210-520-7317

Frenemy to Thyself

On Oprah:

This guest talked about how she used to be her biggest critic. She had this inner voice that told her she wasn't pretty enough or thin enough and she was really mean to herself.

She then realized that if she had a friend that was that mean to her, she'd no longer be friends with them. So why should she put up with that noise from herself?

Somehow I can relate. I'm sure most of you can. It's similar to the way that we worry so much about our families and would be distraught if they were sick or run down, yet we allow ourselves to get run down.

I've still been feeling kind of ick about every other day. And it's making me have the blahs. I can't believe it's already September. We have so little time before the walkathons. And I was supposed to raise $10,000 this year. I think I might just fall short. Eeks! Although Zoe has now raised about $1,800. She's 56% of the way there. Woo!

Ok. I'm now on Season 6 of 24. I am now officially a junkie.

I can do this. Jack Bauer is saving the world. Is it just me, or do they have the hottest villains ever?

I can't believe I did it!

I just gave a speech about my debu_story in front of about 540 people and I didn't even hork once!

It was scary, but I hope we signed some people up today to walk. I even wore high heels and mascara. I think I might be a girl again.

I can do this. Jack Bauer gives me power!

Your assignment today is to donate a dollar to Team Zoe. I know we've been on vacation for months, but it's that time again - no one has donated in a while. And if you are going to walk, order your t-shirts now. They are really cute. Ours should be here today. Even if you don't walk, the t-shirts are cute. And according to Sis #2, they make your boobs look bigger. They do??? All the more reason to order two!

Gearing Up

It's getting to be that time.

A girl on a mission!

I started with Cafepress because you can order stuff and have it shipped on your own & I don't have to mess around with it much. All the profits ($1 per item) go to the Leukemia & Lymphoma Society. I decided not to mark them up too much so that we can make it affordable for our teams. There are kids shirts, dude shirts, and even shirts for big mommas like me. If you see a shirt or a logo you'd rather have, just let me know; I can switch it up and make up what you want.

And for the Debu_fan, I designed a few for me as well. The profits are marked up $5 per item, and the dinero will go to me. So I can pay my car payments. And pay for my blockbuster.com because I'm a complete crackhead for Jack Bauer. No. Seriously. I think I watched 8 episodes one day (hey, I was feeling ill anyway). I fiend for that show. And I love Chloe. She's so cranky and smart. I adore her. Oh, and I also need to pay those bill things. You know. That they send you from hospitals. And for that stuff you take to keep you from dying. Uh... what are they? Oh yeah. Medications. Yippie! T-shirts for drugs. Awesome!

Anyway, I have a bit more to write on my speech. Pray that this herp on my face disappears by the time I have to appear in front of SIX HUNDRED PEOPLE!! The side effects of the steroid taper caused me to flare up with blisters all over my mouth. Now I'm slowly ridding myself of it with some lovely Valtrex, the herp medicine that they show on tv. Wonder if I take it if I'll start going on some divine dates?? (and no. I don't have THAT herp. You know. *whispers* down there)

I am still a wee bit nauseated, but gosh. I feel like a normal person today. Love/hate with those steroids.

I can do this. I have t-shirts.

Your assignment for today is to either a) tell me your favorite episode or character from 24 or b) go pick up Season One Disk One of 24. It's crazy addictive!

I love you internets. And Woo! The Texans beat the Cowgirls!

Welcome Home, Jake!!! Wowweewoowee!!!!

What a great entry to read.

I can do this. Jake's home!!!

Your assignment today is to go visit Jake and welcome him home!!! (click on comments)

Debu_Unfortunate Conversations

P.S.First. If you donate blood and it makes you faint, bruise horribly, endanger your health, get nauseated, etc etc.... well I love you beyond words for trying. For thinking of me. I mean it. But I will not fault you, nor would anyone else, if you NEVER DID IT AGAIN. I will be satisfied if you just spread the word about Donating the Red once in a grand while. Make some other big lug with luscious veins donate for ya!

Debu_Mom:

"Why are you always laying in bed?"
"You should go work out about three times a week?"
"Well it could be a parasite? How do you know it's not a parasite?"
"The washer is empty."
"Zoe needs to eat her food before drinking her milk."
"Why do they send home so much paper from school?"
"Stay positive. That's what they want to hear."
"Tell Zoe to pick up her Barbies."
"I thought the idea was to take you OFF the medications, not add more."
"It looks like the Wreck of the Hesperus in here."
"What time is that tennis match on?"
"What is this crap you're watching?"
"How long are you going to have to take that drug?"
"It's his shoes. They are so clunky."
"Why are you sleeping all day?"
"What is a sixteen letter word for infinitely smaller that ends in the letter V and has no vowels and describes that actor on Hill Street Blues whose son is now on High School Musical 2....?"
"Dinner is ready."
"Well no wonder you are pooping so much. Stop drinking all that coffee."
"We are having hot dogs and Waldorf salad."
"Have they called you back yet?"
"NOOOOOOOOOOOOOOOOOOOOOO!"

I love my mom. Seriously. Like so much. I don't know anyone that doesn't love my mom. How could you not? All the kids (and the now spouses) all have an impersonation of my mom. Especially when she says noooooooooo. I remember when Sis #1 got some siblings together to do a spoof video of Mom doing Devo's "Whip It." I wish I knew where that video was. It makes me pee a little. Which right now is preferable to what I am enduring.

Debu: (to no one in particular)

"My ass. She is aflame."
"I am afraid of my toilet."
"Three squares of toilet paper is not sufficient."
"I think I may have single handedly filled our septic tank." (no. we don't have one. I am being a turd - get it, turd. Isn't dookie funny?)
"It doesn't matter what I eat or drink. Coffee. Bananas. Nothing. Water. My body is all processing it the same way. Fecal matter. Feces. Dookie. Mr. Handy, the Christmas Poo."
"Preparation H, Tucks, wipeys do not work on my roid. It has a zip code and is now learning Chinese."
"I am about to tell my doctor to eat me. This steroid tapering is not working."
"I love Jack Bauer. I want him to have my babies. All my 92302394390 Starbucks babies."
"Is it normal to wake up to poo three to twenty times a night."
"I am afraid of the Kashi."
"I am afraid of Raisin Bran."
"Fiber gives me a panic attack."
"If I needed a colonoscopy now, I think I would have to induce a coma first."
"I am laying down because if I sat up, I would bump my head on the ceiling this roid is so ginormous."
"Did I tell you, my ass, she is aflame?"
"Adult diapers are hott with two T's."
"No. I'm not yet at the adult diaper stage. But it's tempting. The crazy astronaut chick made them kind of cool."
"My stomach is percolating. How sexy is that?"
"Yes. It's curly now. No. It used to be wavy and kind of straight. Like Zoe's. Yes. I'm getting used to it. Oh, (I say nonchalantly, but really wanting to scream) It's just hair."
"I'm going to buy stock in Depends."
"I just grossed myownself out."
"That. Oh that was just my xyz bone/joint/tendon popping. No. They don't give you anything for that. You just start creaking and popping for no apparent reason. I know. I'm old."
"Did I tell you this steroid tapering is not working?"
"I wonder if they need a stool sample?"
"Ha ha. Very funny, Dad."
"I'll pay that medical bill when l pay that medical bill. You might just have to wait to collect on my life insurance to get paid. Happy now?"
"I started biting my nails again. Never a good sign."
"This stuff I put on my nails to make me stop biting them tastes like ass. And now, by this time, I think I know that taste."
"Yes. The bone marrow biopsy still hurts."
"Ya. I'm forty. No really. I am. I use sunscreen. And I made a pact with el diablo. And I eat dog food and drink bat's blood and Taco Cabana bean and cheese tacos."
"When do they start soccer practice? Only eight games? Great!"
"And then the sediment sampling is taken out of the riprock area... oh... damn. I have to ______" fill in the blank _____ drop off the kids at the pool, head to Mexico, lay down the law, have a conversation with the Pope.

Am I sick enough for you now? People should NOT HAVE DIARRHEA FOR TWO WEEKS. ESPECIALLY IF THESE PEOPLE ARE STILL FAT. IF I AM GOING TO CRAP TEN TIMES A DAY, I SHOULD AT LEAST HAVE RIBCAGE BONES AND COLLAR BONES STICKING OUT LIKE ANGELINA JOLIE. ALL I WANT TO DO IS LAY IN BED ALL DAY.

[aside]
This reminds me of a story that mom reminded me of today. When my nephew was little, he liked to watch all these brainy videos. Momo G was babysitting and he asked to watch, "FECAL POWER." Now the kid was known to take a man poo in his diaper, but this was a bit much. He got more and more agitated as he kept requesting "FECAL POWER. FECAL POWERRRRRR!!!!"

Momo called me. "Fecal Power?"

"Preschool Power, Mom. PRESCHOOL."

Ok. Me and my flaming asshole are going to try to get some sleep. It's after 4am and that school thing kind of gets in the way of my sleeping in. Where is the chauffeur when you need him? It would be nice not to want to leave the house like this to take Zoe to school.

P.S.S.Last. What a timely entry I stumbled upon. You mean people actually pay for this side effect? Just say NO!! Your bootie will thank ya!

Busy Mom

Clean bone marrow biopsy results. Thank you, God.

A year and a half in remission. I'm so blessed.

Thanks for all of your support.

My Penpal is Dead

I think it's time for the big meds.

My Iraq penpal, Sgt. Stephen Maddies, was killed in Baghdad on July 31st. I just found out today when his sister replied to my email to check in on him.

I "met" Stephen when I was in the hospital. We made a pact to check in on each other to make sure we weren't dead. I sent him care packages and letters. He was my late night Yahoo buddy when I couldn't sleep. A sweet, funny flirt and a really caring person. I was going to meet him when he got back to the states ... which was supposed to be 18 days from the day he died. I just wanted to give him a huge hug.

I used to kid him that I came from the future and that we were still in love 50 years from now. I did love him like a good friend. We sure did have some fun conversations.

I'm just sick. I don't think I even know how to cope anymore.

Safe journey, sweetie.

There are now 5 people on my yahoo friend's list that are dead. I really just can't bring myself to remove their names.

Safe Journey, Robbi

Robbi.

A long time reader. A wonderful shining spirit. She had a stroke the night of her transplant. She used to email me and comment quite often. I'm tired of writing about people in past tense. She was lovely and beloved.

This just makes my heart hurt.

I can do this. Even with a broken heart.

I was reading through her blog a little more and found this. I know she sent it my way tonight. Thank you, Robbi. Have fun up there with my peeps. Ok. I'll stop crying now.

Prayer of St Francis

Lord, make me an instrument of Thy peace;
where there is hatred, let me sow love;
where there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.

O Divine Master,
grant that I may not so much seek to be consoled as to console;
to be understood, as to understand;
to be loved, as to love;
for it is in giving that we receive,
it is in pardoning that we are pardoned,
and it is in dying that we are born to Eternal Life.

Amen.

They Killed Kenny with some Chocolate Salty Balls

I made myself a Southpark character. Beefcake!!

I Make People Think?

Well I have been tagged with a Thinking Blogger Award by the awesome Dallas K.

I am so far behind in my blog reading and went through my favorites. Sadly, many of them are no longer where they used to be, or they have shut themselves down. I would have definitely tagged Dallas K's (as she's one of my daily reads) but she's already been tagged. So. Here are my five blogs that make me think:

1. Jeanne Sather - The Assertive Cancer Patient. She's just a badass. Everyone that is/knows/has been a cancer patient should read her entire blog. It should be required reading for doctors, politicians, and anyone who works in the health care or insurance industry. I respect the hell out of her and she's funny to boot. Snark to the infinite degree.

2. Craig Hildreth, M.D. - The Cheerful Oncologist. I have mostly read the archives, but am behind on my reading there. Sometimes it's hard to fathom, but it's fascinating to me to read, you know, the other side of cancer.

3. Ms. Pants at Maison Pants. She's my lifesaver. When my life was a mess, and my blog was a mess, she said... hey, here's the hookup. She started me off at debutaunt.com. Sharpest wit around. She comes up with the best phrases and I see people (including me) stealing her schtick all the time. But her blog is funny, poignant, heartbreaking and just a pleasure to read. She always knows the cool stuff first as she's the cool kid we all wish we were friends with.

4. Jake Wood at Jake's Life - Who says all military dudes are illiterate idiots? Here's a can of whoopass who has a way with words to make you smile, laugh and cry all at the same time. If you want to read some thought provoking heartache about Iraq, here you go. Many people check in on his blog somewhat like mine - to keep tabs on whether he is alive or not. Safe journey, Jake. Hope you get home sooner than soon. Get your beer on, man!

5. HiStandards - A truly beautiful woman with an even more beautiful way with words. I commented to her that her blog reminded me of college. When we used to write with meaning and poetry and purpose. (I was a writing major). I have met HiS and she really is someone I admire. She walks the walk. I only wish she had more in her archives.

Thank you all. Thank you for all of your words.

There were many more I could list. At first I couldn't think of any, but then I looked at my favorites. I used to keep up with them all. I think when Zoe gets back in school and things settle down, I will have a little more down time for reading and writing.

I had a fun summer, but the living out of a suitcase and packing driving thing isn't good for me. I feel so disconnected. I am really missing my own space. I don't really feel like mom and dad's is my home because it's basically two rooms for us and I can't seem to get organized there. But perhaps this summer will change that. I am seeing the light at the end of the tunnel.

I dream of houses. Little bitty houses with a few rooms and an office and a cute little kitchen. My red toaster Ms. Pants bought me. My programmable coffee maker. My double counter George Foremans. I keep thinking about my future and I really want to write. But after reading all of the blogs today, I truly feel humbled and inadequate. Everyone blogs now. Everyone writes. Some are better than others, but I honestly don't think mine is all that special.

I read the archives and I remember how easily focused I was when I was going to bed early and writing at 4 or 5am. Wake up, make a mini-pot of coffee. Talk to Monkeyboy and sip and write for a few hours. I'd like to be in that groove again.

I Googled Pamela Peeke today. I feel the inspiration somewhere. Underneath the med haze and the itchy and agitated, I feel the need to write.

It's there. I'm fixin to find it.

Zoeism

Zoe got a splinter. We looked online at how to remove it as most of my old school remedies did not work it out.

So we watched this video of some yucky home-made method with a needle, and a nail clipper. It was just gross.

"No mom! Go to isteppedonapinecone.com"

I humored her. Nada.

"Ok, well then try, whatswrongwithmybody.com."

I'm hot. And not in the good, sexy-chick kind of way. This steroid tapering is sucking. I have a rash on my face and I NEVER break out. I'm itchy. And I'm a dia of the rear and barfy. Yay! Yay! I love my life. I love poo. Vomit. And feeling really agitated when I am in a good mood. Everything is bugging me. So, I'm not writing now. I hate to bug. I think I'm going to go take a cold shower!

I still love you!

Friday Again

Lab tests Friday at 11am - 1pm Bone Marrow Biopsy/Aspiration. At least I don't have to come back for it on the 22nd. I never thought I would want it to be sooner than later, but I do.

I have been ok. Really tired and some bad hip pain. I'm kind of rashy too. I think it is because they are tapering me off of the steroids. Eight mg every other day. At least I hope that's all there is. Either that or this godforesaken heat. I really want this bone marrow biopsy to be clean. I want a full year and a half of clean biopsies. I want to stop worrying about every little ache and pain, but I know that will probably never happen. It's either nothing or it's horrible.

We've been having a great time in Houston. Zoe has been playing so much with her cousins and we went and saw "Underdog" yesterday (way cute!!) I think we will be heading back to San Antonio on Monday (if I can stand the drive/pain from the BMB).

I am going to be really sad to leave. I love it here (although the traffic is unreal). I love being around my family and the kids. I miss being able to call up my girlfriends or my fun Sis #2 to say, hey... let's do dinner. I miss driving around and having some clue where I am. But most of all, I miss my sense of home. Sis #1's house has always been like my retreat. When we lived here, Zoe and I lived in a small, one-bedroom apartment. It was nice, but cramped. Zoe used to play with the neighbors in the breezeway. So we went to Sis #1's casa nearly every week - babysitting or just visiting.

When I would go to Sis #1's house, Zoe had room to run. A big driveway and a street to ride bikes. Real furniture. Playmates. Toys. And I had my sis and BIL to talk to about things. It really was my second home. I felt comfortable here enough to pass out on the couch to nap, to whip up a dinner for us, or to raid the fridge. I still do. I knew my daughter was safe here. And I love my neices and nephews like they are my own.

My BIL said he wishes he had a bigger house so we could stay here. It's a big house, but not big enough to hold six people.

Oh well. Today Sis #1 reminded me that I have come so far from this time last year. And I will come even further by this time next year. I know it's true, but sometimes it doesn't feel that way. I know it will happen.

And goshdarnit if reading that August archive just now didn't make me cry. I remember Monkeyboy. I still do. Every single day. When I think of something funny that I know he'd laugh at. Or if I felt terrible, I know he understood. I feel like a masochist missing him.

Ok. I'm itchy. Like a dog with fleas.

I can do this. I'm itchy and cranky and sore, but I'm still here. Stubborn girl!

Your assignment today is to help me with my talk I have to give on August 30th in SA. Part of it is to discuss how my diagnosis has impacted me and my family's life. I know many of you have experienced this situation. It's nearly beyond words to describe how helpless you feel. How horrible it all is. So help me. Tell me your story. Give me some words.

Thank you, Collins... I miss you! Give D hugs for me, will ya?

While trying to escape through Pakistan, Osama bin Laden found a bottle on the sand and picked it up. Suddenly, a female genie rose from the bottle and with a smile said, "Master, may I grant you one wish?"

Osama responded, "You ignorant, unworthy daughter-of-a-dog! Don't you know who I am? I don't need any common woman giving me anything."

The shocked genie said, "Please, I must grant you a wish or I will be returned to that bottle forever."

Osama thought a moment, then grumbled about the impertinence of the woman and said, "Very well, I want to awaken with three American women in my bed in the morning. So just do it and be off with you."

The annoyed genie said, "So be it!" and disappeared.

The next morning bin Laden woke up in bed with Lorena Bobbitt, Tonya Harding, and Hillary Clinton at his side.

His penis was gone, his knees were broken, and he had no health insurance.

God is Good.

Z to the O to the E

She's back. We're having fun. Decided to hit Houston one more time before school.

Man, I love her so much.

Ok. Dinner time. When things get back to normal, I will be sure to write every day again.

Is it sad when you hope to get your bone marrow biopsy appointment moved up?

I can do this. I have my family.

Platelets Please Houston

A letter from Amy, Liza's sister:

Hello all--

As some of you know and others do not, my sister Liza is currently in Houston, TX at MD Anderson Cancer Center getting treatment for Leukemia. We are thrilled that she is at the top-rated cancer treatment facility in the country and that she has a really incredible medical team working to get her healthy again.

She recently had a second bone-marrow transplant that was a little different than the first as part of an experimental treatment that has only been done on 8 other people, 7 of whom are in remission and doing well so there is much reason for hope. Unfortunately, this treatment I not without its risks and complications and we have run into a big one. A little over a week ago Liza was admitted to the ICU for a lung infection and remains in critical but stable condition. She is sedated and is intubated (has a breathing tube) so she is not conscious. But she is getting better slowly but surely which, the doctors say, is the best way to go. Slow progress is better for ultimate success.

BUT as she works on getting better and being weaned from the breathing tube, she is needing 2 platelet transfusions per day. So WE NEED YOUR HELP to find folks in the Houston area to donate platelets for Liza . If she was back home, she would have plenty of folks to donate for her but she is in Houston away from family and friends. (We do donate as much as we can when we visit but she needs more.)

So what is platelet donation?
Platelets are the part of blood that allows you to clot. Donating platelets takes about 1 1/2-2 hours compared with whole-blood donation which takes about 20 minutes. The process is similar, they just have a machine that separates out the platelets and then returns the rest of your blood product back to you. This is actually a bit less taxing on the body than whole-blood donation. MD Anderson allows a person to donate every 48 hours.

How can someone donate for Liza?
1. Call the MD Anderson Blood Donation Center to make an appointment or for more info. 713-792-7777 Or go to their website: http://www.mdanderson.org/departments/bloodbank/. They have a few different locations so you can find the most convenient one.

2. Do NOT take any ibuprofen or Aspirin or green tea products for 48 hours before donating. Eat a good meal before donating (at least within a few hours).

3. When you arrive at the donation center, they will give you paperwork to fill out. On the sheet that asks for all your contact info, they ask if there is a designated recipient for your donation. Write "Elizabeth Matlack 709193" in that space. If you do not see where to write this, please please ask. This is really important. (709193 is her patient ID number.)


Does it help if I am not the same blood type as Liza?
YES! Liza is A+ but any donation helps. When someone donates for her, she gets a credit with the blood bank for a single donor donation (as opposed to platelets put together from several whole blood donations). Single donor donations are much more effective. The more credits she gets, the more platelets are available to her.


I am not in Houston and don't know anyone there, what can I do to help?
Pass this email along to anyone who might know someone (or know someone who knows someone) in Houston who is able to donate. We are counting on the whole six degrees of separation here so any way you can spread the word might help make that connection.

Please also feel free to contact me if you have any other questions: ameliahamarman@yahoo.com .


THANK YOU for your help by donating, spreading the word, etc. etc......I and the rest of Liza's family deeply appreciate it.

Warmly,
Amelia/Amy

--
Liza Matlack
www.artseducators.org

We Be Movin' ... Again

Hi all!

Going to take a quick vacation to New Braunfels, so I won't be posting (not that I know of). I don't think there is any internet access, but I will try to take lots of pictures with my new birthday camera.

I got Zoe yesterday, and I forgot just how beautiful and spirited she is. I saw her and she is so lovely.

I love you internets. Please leave me some comments so I have something fun to come home to.

I can do this. My squeezer bird-talker is home :)

As far as TMI info, just a follow up to last week:

Normal Obgyn visit - normal tests
Labs look good. Need more magnesium as usual.
No AIDS or Hepatitis. Thank goodness because I don't think I could deal with another chronic illness.
More meds. Blah.
Steroids every other day now - yippee! Although it's kind of making me rashy, it's the only way to get off of them.
Overall, doing better and ok.

Back in 3 months.

I'm a Sicko

Thank you Michael Moore for making me cry.

Missing Zoe. Missing her so much. And these next two days will be just agonizingly slow. She flies home Tuesday with her father's girlfriend. The the girlfriend hops right back on another plane and will hopefully get to fly home. Or catch a later flight. Hope not the later one because it's a 2 hour drive to their hometown from the airport. She's sweet to bring Zoester home to me.

I know I have to leave Houston soon and I don't want to go. My sisters are here. My friends are here. Zoe's little friends are here and her wonderful cousins. We love them so much; I swear they are like my own children. I adore them. I love my folks, but I don't really know anyone in San Antonio. And the ones I do know, don't really know me and think I'm some sort of cancer girl freak. I feel like a total freakshow there.

But mom and dad are in San Antonio. And they have a big house. And I feel safe with them. And they take care of me when I need it. Zoe's school is there too. I don't want to pull her into a new school again. I hope she does better in 2nd grade than she did in first. She was so restless and anxious.

I'm too confused about my life, but when I think about it, it makes me cry. For someone who isn't alone, I feel really lonely. I'm going to go bury my head in the sand a bit.

I can do this. But some days I feel like I can't.

Another no assignment day. Not really up for thinking much. I'm just going to go to bed. Hugs to my family.

No Zoe. No.

Zoe and her dad missed their flight.

Left a little late, traffic to NYC. Next flight was packed solid. I'm trying really hard not to be devastated but now he says he doesn't have enough money to change the flight - maybe back on Tuesday. Who knows. Just tell me when to pick her up.

I should have just flown up to NYC, stayed a night or two to see friends and take Zoe out a bit, then flown home.

I'm not saying any more. I'm just kind of sad is all. I miss my daughter.

I can do this. I'm just getting a little lonely.

No assignment today. I helped white tornado Sis #1's house today and I'm kind of beat.

Happy Birthday Me Bro

Your assignment today:

Wish my donor, Bro #1, a Happy Birthday today. He's 36!!

Happy Birthday, Dude! Make it your year!!!!!

Doc in My Box

Had a gazillion checkups today.

Boob smashin, box doc'in', blood drawin', transplant checkin'.

But I made it. Now I'm just hoping that all my tests are good. Blood worked looked good. But I do have a UTI. Yay. TMI TMI TMI

Will write more tomorrow.

Here is my favorite picture from my birthday. I am hating any and all face shots as I look like a balloon, but psssttt... check out all that HAIR!!

Insomnomaniac

I didn't sleep at all last night.

Was reading a little, then got tired. Tried to sleep, but realized.... hey, debu. You're feeling really pukey. So I tossed and turned and thought and didn't think and meditated and stretched and breathed deeply and prayed and waited and waited and waited until finally I got up. And stayed up. And stayed up more.

Tested my blood sugar. Ok, a little high. But I think I have a kidney infection, so there you go.

So I took some meds, but had to eat with them, had a banana and a little cereal. Then realized....hey debu. You're feeling really head-achy. So I tossed and turned and counted sheep and pigs and shoes and toes. And breathed and breathed more and meditated and prayed. And got up again.

So here I am. Knowing that my neice and nephew are well on their way out of slumber and will definitely be bum-rushing my room to ask, "Hey Aunt Debby, are you asleep??"

My body says yes, but my head does not.

I can do this. I'm off to attempt watching the inside of my eyelids.

Your assignment today is to do some dancing. I had a great, no a superb, birthday night. Even if you can't get out of the house, grab a kid, a spouse, a significant other, your pet, anyone and crank up some music today. Dance like no one is watching... but they secretly are... heh.

I miss my mom and dad.

and Brenda.

Birthday fancypants

I'm 40.

And I'm going to the circus tomorrow!

Haiku birthday:

Ate dinner with friends
Tacos and some birthday cake
I had yum migas

Sis #1 lead singing
Debu is forty today
Screamed to all people

It made me blush bad
I got money in my bra
For giving out cake

I have awesome peeps
My friends brought me Starbucks cards
Never pay again

Then we went dancing
Nearly forgot how to shake
But was reminded

Came home to email
Fiona you are the best
Even in Hong Kong

Have much birthday love
And even a birthday kiss
From a special friend

Although I did get
Way too big birthday spanking
The kiss made up for it

It was an incredible night. An incredible birthday. At my party in Austin last week, my siblings bought me a digital camera. *hi* Missymouse! I was a little bit overwhelmed after today. It's so good to be with my friends and just be sometimes.

I can do this. I'm FORTY now! I'm going to the circus. Zoe gets home in six more days! Life is good!

Your assignment today is to say hi. I'm glad to be here. I'm so glad to have another birthday. I just wish I didn't need sleep. I'm so grateful to all my friends, family and total strangers for their love and support this year. There is no way to repay you. So say hi. I'm way behind on thank you cards.

P.S. Don't pee in the Mercedes

Houston Bound

Packing again. Off to Houston.

I got a new camera from my siblings for my birthday. I can't wait to figure it out and take pictures. I was so stoked when I opened the present. I really just wanted Starbucks cards, but gosh... that was the coolest gift ever. I really needed one. I nearly cried, but didn't want to be a big baby.

Been just kind of sad lately. I think it's missing my squeezer Zoe. I can't wait to see her.

Ok. lots to pack and bring to my car.

I'm roadtrippin, baby!

I miss y'all. See some of you in Houston soon. If you don't have dinner plans on Sat night, email me. You all are invited! I wish you lived here Yoda Yiddish Master! I love y'all.

I still have that irrational fear of dying before I'm 40. I feel panicky. I have two days. It's totally irrational, but I have always felt that way. I can't die. I have too much to do still.

I'm giving a speech to the corporate kickoff for light the night in San Antonio. There will be 600 people there. I'm excited yet I feel like I'm going to barf.

Mouse or House?

Your Score: Dr. James Wilson

50% Eccentricity, 30% Confidence, 75% Kindness

Congratulations, you're Dr. James Wilson! You've got the tough role of being the conscience and best friend to Dr. Greg House, which proves that you must be secretly (or openly) insane. You're always a good person for providing advice, witty remarks, free lunches, lectures, and (wanted or unwanted) psychoanalysis. You are about as confident as the average person, but you have some big issues with yourself, and may have problems living up to the ideals you have in your head. You do really care about other people, though, even if you sometimes express that caring by trying to get into their pants.

Welcome Back Sis #2

Sis #2 is/will be back today I think from her Missionary trip to GUATAMALA!

I prayed a lot for you. I miss you bunches.

Hope You're Doing Well. Haveaniceday

I'm feeling better.

Went to the ER Monday. I was pretty much in agony. Each time I get a headache that I think is the worst one I've ever had, I get one even worse than ever. Some day I swear my head will 'splode.

Catscan
Bloodwork
Lumbar Puncture
Exam

All pretty much came up with nada. Clean. No infections. I was glad to hear it. But frustrated because I felt so awful. I got a nice prescription for muscle relaxers and some megamotrin.

I just want my body back. Agony and pain one day and ok the next. The hell?

I'm sick of my meds. I felt like a freak in the ER showing them all of my meds. The doctor was like.. why are you on all of these.... still? Well, it all boils down to the graft vs. host in my stomach. If I skip my steroid, I feel sick and can't eat. So while I'm on steroids I have to be on immunosuppressants. And while I'm on those, I have to take a lot of "anti" drugs. Anti virals, anti fungals, anti pneumonia, anti anti drugs. And I take lots of vitamins - mega, calcium, vitamin D, magnesium, potassium. I have really expensive pee. Then I take a pill to protect my stomach from all the other pills. And some allergy stuff. And then there's that whole diabetes thing.

Basically I'm a walking pharmacy. Love em. Hate em.

But you know what? I'm still here! And almost 40!!

The docs couldn't believe I'm almost 40 because I don't look it. I'll try to have my sis take a good picture of me for my birthday. Maybe one where I don't have 2930439 chins and my hair kinda sorta looks cute for a change. It's very curly still when I wake up. If I don't really mess with it, I can make it kind of cute. It's very soft too. Not too many grays either. I think it will be pretty when it grows out more. GROW GROW GROW I say!

I can do this. I woke up today!

Your assignment today is to send someone a post card. Or a letter. Snail mail is fun. And it's nice to get something that isn't junk or a bill in the mail. Make someone's day with a little card. Or a quick helloooooo.

If you want to send me one, there's an address on this post. No bday presents allowed!!! (cept maybe starbucks cards to support my sixbucks crack habit) I will try to write back. I like to write letters and am long overdue on some of my correspondence, but I'll try.

I miss my Zoe, but I know she is having a super duper blast in NY. She now gets back on July 28th in Houston instead of Austin. I might have to have a belated bday party then. I can't wait to see her. I miss her snuggly little self.

High There

Have you ever been in so much pain it work you up?

I have. Often. And especially this morning.

Why is it when this happens to me I am not in Houston so I can go see my peoples at MD Anderson? I dread even finding out the cause because it means another gazillion tests and waiting and feeling like a big hypochondriac only to find out it's one of your meds. Every headache is a brain tumor. Or just that you slept funny on a bad pillow.

So now I'm going to go get some yogurt because I just took a Darvon (which I almost never do anymore.. it's been a long time since I took pain meds) and am getting so high but want to go back to sleep to see if this pain will subside so I can live today.

Since I'm high, I'm going to blather.

I'm feeling very homeless lately. You know that feeling you get when you go on vacation and you have a really fantastic time and then you come home and are like, "ahhhhhh..... I'm home. My own bed. My own sheets. The sounds and smell of your own house.

Well I don't have that anymore. it's a series of packing and unpacking. Trying to make things fit in a space that isn't yours. Trying to be a good house guest and not annoy people or have them burr at the clutter that is now part of their home. The invader of their space. I want my things back. I want a closet that is mine that is big and where all of my clothes fit. I hate it when I'm wanting to go somewhere and I think, "Dang. I wish I had that bracelet, but it's in San Antonio or a shirt that is packed in storage." I already feel like I bring my world with me, but I'm a girl. We like to have JUST the right pair of shoes at the right time. But gosh, I sure hate hauling all this stuff around.

[aside]
Don't get me wrong. I am having a wicked fun time and absolutely love seeing my family. Even if we weren't related, I would want to be friends with them because they are so cool and fun. I'm lucky that all of us live in Texas so it's basically a tank of gas or two to get me to them. And they don't *make* me feel like I'm overstaying my welcome. They actually go way out of their way to let me know that they are glad I'm here. And by here, I think it has a double meaning of ... "Shit, Deb, we are just so damn glad you didn't die." Besides, I try really extra hard to be not just a good houseguest, but one that has some value added - like doing some cleaning or babysitting. It's honestly the least I can do for the people that helped me kick cancer's ass.

Someone play the lottery for me because I can't seem to remember what it is like to have my own space and my belongings. I feel like I will never have that again. I applied for a credit card at a clothing store the other day so I could get a discount on my purchase. Sis #1 said that was bad because it lowers your credit score every time you apply for a card.

And it was weird, but I was like... and? My credit is already so fucked that I didn't really care. I have no job. I can't imagine working again. I can't imagine living long enough to even need a good credit score - you know for things like buying a house or purchasing a car. I feel like I'm flying by the seat of my pants. I have no idea what kind of future I will have. Because for some reason I can't even picture it.

Sis just blankly looked at me and said that it will happen. Same way as my mom once looked at me one time and said, "when you get married again...." Like without thinking twice about it. As if it were a given.

I don't know why, but I don't feel like anything is a given anymore. I feel like I did when I was being treated... "Ok, so what do I have to do today? What is on the schedule for today?" I can't even see past today. I don't see a house or a husband or even a boyfriend for that matter. Um... How can you date when you don't have your own space? What? Do like I did with jerk-face Elvis? Hang out at my PARENTS house all the time? It's worse than high school.

I see Zoe's future. She's got the world right there. I just hope I live long enough to encourage and support and love her so that she sees how bright her future is. I hope that if I die, my family and friends will carry on that mission (and not her dad.. God love him, but he's not the type to see what I see) My beautiful, smart, funny little bird-talker can do anything.

But it's so creepy to not see your own future. To not have any idea how to make it happen. Or even really the desire to do so. I know I could work and go back to what I was doing. Supporting myself. Making a wage. But it is such a mundane existence. To work for "The Man" and to barely ever see my child. I love her so much, but I didn't love being a single mom. A single working mom.

That's been one of the greatest things about getting cancer. How fucking sad is that? That now that I'm unable to work, I can actually do the kind of things I wanted to do before - you know, the soccer mom things. I always wished I could have been a stay home mom.

But as they say, be careful what you wish for. I guess I never figured that cancer would make my stay at home mom thing happen. My scenario didn't quite go like this. It was more of a Susie Homemaker one... the house, the husband, the dog, the minivan. I wanted summer vacations traveling across America. Taking my daughter to gorgeous beaches in California, seeing Disney or Legoland or the Grand Canyon.

Not quite what I got, now is it? Mooching off of family to shack up for a week here or there. Saying a quick hello to Zoe on the phone. (man, she's having a great time, so it lessens the whole missing her nutso) And not knowing what is in store for tomorrow, much less a future.

Does Darvon turn anyone else into a big fucking whiny baby? Cos it apparently does it to me.

Life isn't handed to you. It's hard work. It's responsibility. Gainful employment. Taxes. A J to the O to the B. I get it. I have done the work thing before. I wasn't always a slacktastic blogging goddess. I worked for my meager living. For many years. I sucked at it, but I did it. We all do it.

I get emails all the time from people with suggestions of how to do these awesome creative things. Write a book. Learn coding. Design websites. Become a motivational speaker. Find your passion. Sell realestateskincarevitamins x, y, z. I'm sure I could do any or all of those things.

But honestly, I get exhausted from just doing laundry sometimes. I have days where my body tells me... stay in bed or I will make you pay the price.

So how exactly does that happen post-cancer? How do you get up, make yer coffee, shower, dress and commute when all you want to do is hack your brain out of your skull because it hurts so bad?

I can't figure it out. So instead, I'm just going to go get some yogurt and go back to sleep. This is what I know is happening for today.

I can do this. Like I have a choice?

Your assignment today is to laugh. Life is so hard sometimes that basically all you can do is throw your hands up in the air and just laugh.

Oh. Also, do something daring.

I am not much of a pet person. We never had them growing up because we had a zilliondy kids and no one would do the clean poop thing. So anyway, I went with a friend to Bull Creek here in Austin. It's a natural little creek and it has this beautiful waterfall/swimming hole kind of thing. Lots of people bring their kids and/or dogs and they just hang out. Very Austin-ey.

Now I like the outdoors, but I hate the heat/sun/bugs/ and other funkaphenalia that makes up nature. I don't like to sweat or stink. And I am like Bren/Cody's Mom. I am either blanco or rojo. My skin does not know the meaning of tan. I probably would be outdoors all the time if I could take the sun and/or the heat, but I just can't. Fact.

So my friend has these two big gangly Golden Retrievers. And they are like nutso for tennis balls. So I was like... ok. fuck it. I'm going to go out and play. Sis #3 said she won't bring her dogs there because there are all kinds of doggie disease and funk there. But I wanted a little freedom.

Sunscreen - waterproof SPF 50
Ballcap
Lots of hydration
The ugliest crocs known to man given to me by BIL #1
Purell
Visa card
Sunglasses
Medical Insurance card
Medalert bracelet
cell phone
extra sunscreen for my lips

I was set to go. And damn it was fun. We mucked around for hours in that water. Walking on the rockbed covered in slimy slime. I picked tennis balls out of the water. Let one dog use me for a towel (he doesn't know how to shake off the water well enough so he will sneak a rub on you to dry off - or go to a strangers towel/picnic setup and dry off. Grabbed balls out of the dog's mouths with my BARE HAND. And generally laughed and splashed around the joint.

It was the most fun I've had in a long time. It actually made me think about getting Zoe a dog since I know she loves them so much. But then I was like.. nah... we can be like grandparents to our friend's dogs - that way we can give them back.

And if you know anything about me, you'll know that mucking around a bacteria-laden creek and touching slimy tennis balls and/or wet dogs is not my cup o'. But it was simply AWESOME!! When we got back into the truck, the dogs were worn out and tired. I even looked back and let the blond one smoosh his face up to mine. I think he may have even licked my cheek

So... do something daring. You never know, you just may have the time of our life! I know I did. It was so freeing. That must be what it's like to be a dog.

I double dog dare you.

International Supastar!

Two weeks from today I will be 40!

What to do? What to do?

I'm not even sure which city I will be in - San Antonio, Austin (most likely) or Houston. So when I'm in your city, let's celebrate!

Forty. Wow! Yippee!!!!!!!

blah blog

Went to Houston for a week or so. Love those people. Love 'em up. Got lots of hugs.

Drove back to Austin Friday. I feel so much at home in this city.

Still feel like doodie. But made myself (with some help of Sis #3) go swimming at the gym. I feel better, but still kind of off balance. I'm sick of drugs. I'm sick of taking all of these fucking drugs. I wish I could boycott just for a week. But even missing one day makes me waybad ill.

I don't feel like writing, but wanted to check in. My blog is all wack, so it makes writing here unenjoyable. I needs me a MT expert. I know it's just my computer though. Some weird setting. I don't know how to do a damn thing on here either. Heck. I just want to write when I want to write. Not wade through spam or have these slow issues.

I miss Zoe. I miss her so much I can't talk about it.

I am off to watch more of 24. The Jack Bauer Power Hour. Man, he's hot. I think he's short, but he's hot.

I can do this. I have Jack Bauer on my side.

Your assignment for today is to enjoy this damn heat. Sunscreen up and go out and sweat yer buns off. Then go swim or take a long cold shower.

Still Chill

In Houston. Chillin and hanging with the siblings. Feeling ok, but waiting on MDA to call me back. I'm having some issues with vertigo. No es bueno. It's like sitting up and *poof,* you're drunk!

Gotta run, but wanted to say hi!

Go visit Jake today. He's amazing. Say hi. Send him stuff. Tell 'em Deb sent ya!

I can do this. I may be dizzy, but I smell nice.

Your assignment today is to send some special prayers/vibes to Sis #2 who is going to Guatamala on a mission with the church, and to my friend Collins and Day (hope they fix you soon!), and to Snit, who got in an automobile accident - sore, but alive. I love you. Especially you, Claire :)

Zoe on the Go-ey

She's having a blast with her dad. I'm in Zoe withdrawal. She loves tennis camp. Two hours a day.

"Did you have fun at tennis camp?"

"Yes, it's a blast."

"Are you any good?"

"No. I stink. It's not as easy as it is on the wii."

Such is life.

I am enjoying Austin. It suits me. I may get to meet my girl Dawn and her beautiful new baby Gage. I'm headed to Houston for the weekend to babysit for Sis #1. I don't feel much like driving, but I know once I get there I will have a great time. I love my Houston babies.

Man, I miss Zoe. She's exhausting but lovely. I am in serious lack of hugs I think. I remember years ago, after Zoe's dad and I split, I was riding in the car with Sis #2 and her then 3 year old son (I think he was about 3). And I was sad. I can't remember why... probably Zoe's dad. But her son said to me, "Cheew up, Aunt Debby."

That's all it takes for me. A cute little face to make it all right. A drawing from my early-genius fascinating nephew. The sound of my little neice's voice doing an early morning play-by-play. The sight of my littliest niece aka "Busy" walking around - stopping to be curious, moving on to the next thing, pausing, gibberish ... the constant movement. I have a hard time understanding her sometimes, but then out pops a word you know clear as day. It's adorable. Sis #2's kids all look like Disney babies.

I had lunch with Bro #1 (my donor) and his 6 year old daughter and 14 year old step-daughter. The little one is so shy.. hiding behind long blonde bangs. She is so quiet to me and then out pops a complete conversation. Like she is in her own little dreamworld ... sleeping until she wakes. The older one I have known since the day she was born. Her mom and I were good friends before she married my brother. Her daughter is very special to me and I adore her because she's sooo not a bratty teen girl. Awkward sometimes, but so lovely. When everyone says our youth are so lackluster, I think of her and I smile because I know that past that teen angst is a quality human being. I miss seeing her mom. We don't see each other that often.

It's the little things, especially the little ones, that make my life worthwhile sometimes.

I'm tapering off the Lexipro (with the ok from my docs). I know I don't need anti-depressants. I know they help many many people have a better life, but I don't want to be numb to my life. I want to be sad sometimes. I want to grieve if I need to. I've gone through something sad in my life. But I find that these antidepressants make me kind of blah about everything. No highs or lows. Just mid-levels.

I don't mind being sad once in a while. Because I know how resilient I am. I know that it is only a temporary for me. The tapering is making me cry way too much though. I'm getting nosebleeds. I should just shove a box of kleenex up a nostril.

Ok. I want to watch more episodes of 24 on DVD. It's kind of a cool show.

I can do this. I have the little peoples.

Your assignment today is to tell me something small that makes you happy. And if you can't think of anything, find something!

P.S.

BTW, I'm not saying not to continue with embryonic stem cell research. I just wish we could put as much effort into making people more aware of adult stem cell research. And the bone marrow donor list. The cure rates would probably go up if we had more people (and cord blood donations) on the list and if they had more funding to more quickly advance the research they already know works and even perfect it. e.g. gvhd issues for transplant patients. Or expanding their research on paralysis or Parkinson's.

I can't get in the middle of the hot topic embryo / fetus issue because I can see both sides of the picture there. Sometimes it's just not worth wasting your breath on an issue with such passionate sides. But when you have something that is working, why not subsidize that more and continue making progress there? Embryonic research is the big push button. Can't we emphasize my beloved adult stem cell research more?

Why put our money on research that is in babysteps when we have some legitimate and viable solutions with more discoveries every day? Sure. Keep on doing embryonic research. That's ok. It is kind of laughable to me because so far the research there has been fruitless. But don't push for the majority of funding into something that is so iffy. That's what I'm saying. Why put all your focus and effort and manhours on embryonic when Adult Stem Cell research is making real progress?

When I was trying to get people to sign up for the Thanks Mom Marrow Donor Drive registry, I called and emailed my pal Lance Armstrong's Foundation. They would not publicize it, email about it, nor would they post it on their site. I was told that they would tell the phone banks for people who called in to the foundation. Yeah. That's what people call about (NOT!)

When I tried to get my daughter's Catholic school to put fliers about our drive in the kids school folders (I even offered to do the work) I was told that I could leave them in the lobby of the school for those who were interested. Yeah. We signed up SIX people out of over 5,000. They were all really interested. *rolls eyes here.*

I'm sorry, but when you (e.g. Lance Armstrong) send me a zillion emails at the touch of a key, and testify to congress and preach and make your living talking about beating cancer and survivorship, and yet I never read anything on your site about the advances they make in cancer CURES with adult stem cells, well it just kind of... pisses me off. Same goes for the many cancer informational sites. No info. It's all about breast cancer and what a beast George Bush is (talk about a job I'd never want!)

The time is now. Get over the drama about the stem cell debate. Just take that word out of the equation. Even the National Marrow Donor Program won't even say the word *whispers* stem cells. They use the phrase "blood producing cells" in their literature.

Everyone hates disease. Especially cancer. As Lance says... we have a 9-11 every few days from those who die of cancer. Put some effort behind something that will make a difference. IT MAKES A DIFFERENCE!! Just ask anyone who has survived a stem cell transplant. Like ME. My family. My Zoe. My friends. It has made a difference. At least I hope so.

I hate that I had friends die from cancer this year. I hate it. And I cry sometimes because I wonder if we had more emphasis on this type of research years ago would they have survived? Would it or could it have made a difference in any of their lives? It makes me so angry. And I wonder... if God spared me so that I could open my big mouth about this topic. So that I could change and inform the many people about the possibilities and the cures?

Please don't let me shout alone. I am shouting for Sarah, and Brenda, and Eric, and Clem, and Ashley, and Gayle, and Cookie, and Kadin, and Paula, and Joseph and all the many loved ones we lose every day.

Don't make me have to stage a boxing match with Michael J. Fox, ok?

Baby Stem Cells, Bush and his Beto Powah

I'm sick of this debate. I don't care much for Mr. Bush. But am I mad that he did the whole veto thing on embryonic stem cells? No. I'm actually not.

Many people are pretty much up in arms over his veto. I was reading a forum about this discussion and here is what I have to say.

I'm a Catholic. And not quite as conservative as my parents, but I feel myself drifting in that direction. I could link tons of links, but I won't. Maybe a few because I read about this issue all the time as I wonder why so many people refuse to sign up on the National Bone Marrow Registry.

Especially you all who are up in a buttwad over Bush's veto and the embryonic stem cell research debate. Do you really even understand the debate? Or do you just hate Bush and anything he does?

Are you on the NMDP list? You know, THE LIST THAT CAN AND HAS SAVED MANY LIVES? Not potentially, but really.

What it boils down to for me is that adult stem cells offer hope, not hype. This country's obsession over this debate takes away funding and exposure for REAL cures with ADULT stem cells.

Part of the debate that some people don't know is that there is no ban on embryonic stem cell research. The research’s been going on for a while now. The controversy comes in because some people think a) we are killing fetuses/lives and/or b) we should not have to personally fund all of it - let the bio-tech and private firms fund it since they will largely with big bucks benefit from it if it works.

I’m more of Camp b). Why should we pay for something that is a might be, especially when adult stem cells are proven to be successful? They probably would be even more so if there wasn't such crap going on with the damn embryo debates. Many of the adult stem cell success has even come from other countries because we in the US are so busy humping the potential of embryonic cells.

“No one should think that the stem cell debate forces us to choose between ethics and science,” she added. “We can support both. There is no need to sell our souls in the quest to heal our bodies.”

I don't know exactly how I feel about aborted fetuses, extra embryos being used, etc. etc. And I'm not really about to debate that. Personally I think that's between you and your God of choice, but I can see both sides so it's not an either or for me.

But I am about saving lives NOW with something that works.

Ok. As most of you know, I've actually received stem cells, ADULT ONES, donated to me by my brother, and so far so good. Cured of leukemia. That's right CURED. My transplant nurse at MD Anderson is over 17 years out - yes YEARS from her bone marrow/stem cell transplant. There are some of us out here already, but the numbers are growing by the day.

From this link - Proponents of embryonic stem cell research have created a false impression that these cells have a proven therapeutic use. On Nightline on June 20, for example, Ted Koppel said that while adult stem cells have some uses, embryonic stem cells are "the most successful to date." In fact the embryonic cells have never helped a human patient; any claim that they may someday do so is guesswork. Adult stem cells have proven benefits, and new uses are constantly being found.

Current Clinical Use of Adult Stem Cells to Help Human Patients:
Autoimmune diseases (multiple sclerosis, lupus, juvenile and other rheumatoid arthritis)
Stroke
Immunodeficiencies, including a new treatment for severe combined immune deficiency (when used with gene therapy)
Anemia
Epstein-Barr virus infection
Corneal damage (full vision restored in most patients treated in clinical trials)
Blood and liver diseases
Osteogenesis imperfecta.
Cancer treatment (in combination with chemotherapy and/or radiation):
Brain tumors
Retinoblastoma
Ovarian cancer
Solid tumors
Testicular cancer
Multiple myeloma, leukemias
Breast cancer
Neuroblastoma
Non-Hodgkin's lymphoma
Renal cell carcinoma
Cardiac repair after heart attack (clinical trials announced Spring 2001)
Type I diabetes (not stem cells as such, but pancreatic islet cells from donors)
Cartilage and bone damage.

Some embryonic stem cells have actually been shown to cause tumors as they are very genetically unstable. "’...with embryonic stem cells, a significant number become cancer cells, so the cure could be worse than the disease. And they can be very difficult to grow, while adult stem cells are very easy to grow.’" Also, "...so these cells [adult stem cells] are less likely to form tumors, a tendency in embryonic stem cells that has barred them from use in human trials."

NO embryonic cells have ever been shown to cure any human beings... why? Because they can potentially cause cancer... so they got BANNED from human trials. Got that?

Yes, I know some of these links are from Catholic publications (so obviously they must be fake or skewed - uh, whatever - Catholics aren't the only ones opposed to embryonic research), but they come from articles in publications such as the Washington Post, Scientific American, The Times (London) and from research facilities like: The Scripps Research Institute, New York University School of Medicine, UT at MD Anderson, Cornell University Medical College, the University of Minnesota, the Robert Wood Johnson Medical School in New Jersey, Argonne National Laboratory outside Chicago, New York University, Yale and Johns Hopkins. There are many others that work with adult stem cell research because the breakthroughs are many and the cures have been happening.

“New Studies Show Promise for Ethical Stem Cell Research” Interesting Link

Some of the titles are just cool and exciting to me:

And this link:

SCIENCE NEWS (Scientific American) http://www.sciam.com/article.cfm?articleID=E3DA1666-E7F2-99DF-3D596D3DE6D0976A&chanID=sa003
May 31, 2007 Newfound Stem Cells May Lead to Regenerative Therapies for Damaged Muscles. The discovery of versatile stem cells in muscle tissue could help combat the progression of muscular dystrophy.

If nothing, please read these links before you reply to my post. Use your brain and don’t rely on some fake bullshit that these movies stars and politicians blather about, and try to do your own thinking for once on a subject. I love MJ Fox as much as the next gal, but if he put his power, energy, efforts behind adult stem cell research, I bet he might be much more successful in finding a true cure. Faster and more reliably.

Here are some answers to the FAQ about stem cells and why people oppose the research on embryonic stem cells:

Link to - Scientific Experts Agree: Embryonic Stem Cells Are Unnecessary for Medical Progress

HIGHLIGHTS from this link:

“As compared to embryonic stem cells, adult derived stem cells are endowed with additional developmental instructions and may be better suited for therapeutic purposes. According to [Dr. Shahin Rafii of Cornell University Medical College], ‘We are approaching a day when a patient’s own stem cells can be induced to divide and develop into tissue that can replace that which is diseased or destroyed, making overcrowded organ transplant lists and rejection of foreign tissues a thing of the past’.”

***

Of particular note, local favorite of mine:
A team from the University of Texas M.D. Anderson Cancer Center in Houston recently repaired heart muscles in animals by injecting them with stem cells extracted from human blood. It’s the stem-cell equivalent of Columbus reaching America: Not only would cells harvested from one's own body eliminate the risk that they would be rejected, but obtaining them would be a simple, painless proposition.

“‘This work gives us a way to get the cells that's as easy as giving a blood sample,’ says Edward Yeh, M.D., lead author of the study. The real mind boggler is what the stem cells might mean to the 1.2 million Americans who suffer heart attacks each year.”

***

“Umbilical cords discarded after birth may offer a vast new source of repair material for fixing brains damaged by strokes and other ills, free of the ethical concerns surrounding the use of fetal tissue, researchers said Sunday.”

***

Commenting on a study by researchers at New York University, Yale and Johns Hopkins:

“‘There is a cell in the bone marrow that can serve as the stem cell for most, if not all, of the organs in the body,’ says Neil Theise, M.D., Associate Professor of Pathology at NYU School of Medicine... ‘(t)his study provides the strongest evidence yet that the adult body harbors stem cells that are as flexible as embryonic stem cells’.”

***

“A team of Texas and British researchers says it has produced large amounts of embryoniclike stem cells from umbilical cord blood, potentially ending the ethical debate affecting stem-cell research -- the need to kill human embryos. The international researchers said the cells -- called cord-blood-derived-embryoniclike stem cells, or CBEs -- have the ability to turn into any kind of body tissue, like embryonic stem cells do, and can be mass-produced using technology derived from NASA....

“Scientists believe the ability to replicate tissue could lead to the development of ways to replace organs as well as treat life-threatening diseases such as diabetes, Alzheimer’s and Parkinson’s, which have been the focus of stem-cell research.”

***

“New surgery which has apparently helped some paraplegics walk could be performed in Dunedin later this year as part of an international trial, a city neurosurgeon says.

“The surgery used stem cells from the patients’ noses to partially repair their spinal cords, Dunedin Hospital neurosurgeon and Professor of Bioethics Grant Gillett said yesterday.”

[didn't know you had stem cells in yer nose, did ya?]

***

“PharmaFrontiers (a Woodlands, Tx firm) has an exclusive contract to develop stem cells that are created from monocyte white blood cells taken from adult blood donations....

“Stem cell treatment for diabetes and heart failure should be commercially available in five to six years, company CEO Dave McWilliams said. ‘The technology actually allows us to change the cells to stem cells and then change them into any type of cell we want,’ he said.’ ...

“There is no one in the United States currently working on any treatment studies using embryonic stem cells, McWilliams said.”

There is more. Much more. But I’ll stop linking. It’s hurting my brain.

So what can you do?

Spread this link around. If you blog, blog about it. Myspacer it. Forum post a link here. I mean if you are going to debate it to death, at least know what the other side is talking about. Otherwise you are just a blowhole. Here is the link to this entry: http://www.debutaunt.com/archives/001168.php#001168

Join the NMDP registry. Don’t be a damn chicken.

Oh, and give blood. I don’t want excuses. If you are not able, or are too chickenshit, make someone else donate for you. Convince them that Jesus or Buddha or Jimmie Hendrix, Radiohead or Jay Z would do it. Or that it is cool. Heck, some people are now donating blood and then drinking afterwards because they can get a better buzz off less alcohol. Not that I’m recommending that or anything, I’m just sayin’. If you can’t do it, get someone else to take your place. It’s never important until it hits your friends or loved ones. Well I can tell you that everyone who receives blood has friends or loved ones that are fighting and praying for them to live. And so many of them need blood.

If you are pregnant, demand that your baby’s umbilical cord blood be stored.

Call your hospital and tell them that they should start the program there if they don't already have it. Only one hospital in San Antonio will collect for the local bank, that's crazy. So talk to your hospital and tell them they should. Or find a hospital that will. You can actually store it for FREE in the National Registry. Yes, you may not get your own if you should unfortunately need them, but heck; there are what in the US? Four million births a year? Thassa lotta stem cells right dere.

Even if you donate it to a private bank, who is to say that they will still be in business 10 or 15 years from now? Or that the cord blood stem cells will actually be viable so many years from now. It's expensive. And potentially not life saving if they went bankrupt or the cells are no good.

Stop spreading rumors and nonsense.

If the cure for AIDS was on the brink - or even had shown results, why reinvent the wheel on a what if? Especially if that ‘what if’ takes away potential funding monies or attention from the AIDS cure. Why aren’t diseases cured already? Well I know conspiracy theories abound, but I think partially because the funding is going out to half-cracked researchers on "maybe" proposals.

Don’t donate money to people who just want you to wear a wristband or slap a magnet on your car.

Help fund real research and those people who fund it. Like the Leukemia Society, MD Anderson, or other hospitals who are doing research on adult stem cells. Yes, my Lance Armstrong wants you to Livestrong with his little yellow rubber bracelet, but the man also donates money to research. I’d like him to pay more attention to adult stem cell research… but our time will come. Soon. I’m pretty sure that when you donate to a reputable organization that you can also earmark it to be used specifically and only for research.

Please help end the debate. With adult stem cells, real advances are being proven and are curing people.

I hope to be one of them. For a long ass time.

I can do this. I am a supporter of adult stem cell research and I approve of this message.

No assignment for today. Just be informed before you flap your gums!

Shrill Collector

How not to make my day:

Call about a medical bill at 8:00am. Although with the killer headache, it feels like 4am.
Tell me I need to pay the $250 to MD Anderson that I still owe from Oct or Nov 2005.

I agree to pay, of course - I'd be happy to; but don't want direct withdrawal from my checking account in case I have an emergency. I'm low on the extra disposable income, ya know, the whole not working thing and all.

She tells me she can set me up on a low bill plan if I have them directly withdraw it from my account.

"Um. No." What part of no do you not understand?

She starts going over my expenses and wants to know how much I get from disability.

"I don't want to tell you," I reply.

"Well I can't qualify you for a plan unless I know your income amount and your expenses. (for $250?? I could see if I owed like $250K, but two fiddy?)

She asks me what was my plan with MD Anderson when I was there.

"UM. NOT DYING!! That was kind of the plan."

Didn't quite think about the out of pocket when they were billing me $137K for a five day chemo stay. Which I did at least 5 times. $40K for the four-day bronchitis. I don't want to know about the MONTH long stay for my transplant or the THREE WEEK stay for encephalitis. Or even the week stay for the bad headaches where I saw every brain specialist they threw at me. Blah, blah, blah. They keep me alive. And I love them.

They have gotten a lot of money from my insurance company. They were also kind enough to write off some of my out of pocket. Please don't harass me for 250 bucks.

"Ok. So what do you get from disability?"

I tell her. Silence.

"Well that's a lot more money than most people take home anyway (I was assuming her). You *should* be able to pay this off."

I start listing expenses. You wanna play that f*cking game?

Car Payment
Car Insurance
Life Insurance
Renter's Insurance
Storage feel (expensive!)
School tuition (thanks Debu_Dad)
2 other hospital bills
Medical insurance for Zoe
Lunch fees for school
Uniforms (last years were $700)
Cobra payment for me
Gas and/or maintenance
Starbucks. Hey. My damn medical insurance really should pay for that as it stops the headaches every day. Cheaper than some drug anyway.

Uh. Food. Clothes for me once in a grand while.

Do you really want me to go on?

"Well do you get child support?" Yes. If you could call it that. I save it in case Zoes needs to see a doc, since her dad doesn't pay her monthly medical insurance. I don't press the issue because he keeps her for a while during the summer. Although right now I think I have about $3.82 in my savings.

Happy now?

Wait, Shrill Collector. I forgot my meds. Yes. I'm in remission. But I still take about 40 pills a day. EVERY day. And even with a copay they are not cheap. I have spent over $900 a month on them several times. That's why I need my financial aid from MDA. $5 copays. It's worth the drive to H-town to save $600 a month on meds.

"So. Can we set up a payment plan?" I ask.

Back to the direct withdrawal crap.

"So, if I mail them a check directly, they won't cash that?"

"No. They would apply it to any current bills. So do the direct withdrawal and the calls will stop. (I don't care about the calls, most of the time I don't answer because I recognize the number) Like I said, you should (she says rudely as shit) be able to afford it."

"The only thing I *should* still be doing is sleeping. And not getting harassed over a $250 bill. I have a snotty cold and can't get rid of this cough I've had now for three weeks. I should be able to do a lot of things. One of them is to hang up on you, bitch"

I'm just not so nice sometimes. I wouldn't have been an ass had she not been so rude with her tone. She just quite didn't get that, yes, while I do receive some income and sometimes it works for me, it's not enough to cover expenses sometimes. If I had to pay rent, I'd never make it at all. If I get sick, it's worse because they make me take more meds. Whatever. It's my situation and I just wasn't feeling like having a judge hang me over $250. Especially a rude one.

I'm a Cancer who had cancer. We are the crabs. Fairly cool until you start jacking with us! Then watch out. I don't have patience for bill collectors. I think that would be the crappiest job on the planet. I'd rather clean up after zoo animals than have to call people who are in kind of difficult situations and tell them to fork up money. I've had some nice ones though who were like.. woah... that's awesome that you are in remission. God bless you and take care.

I'll pay when I can pay. If not, my life insurance will pay it when I die. Happy?

I can do this. Just don't call so early.

Your assignment for today is to do something charitable. You know, the whole pay it forward kind of thing without the kid getting stabbed in the end. I have a friend in SA who works alot. But he decided to take some time to volunteer at the food bank. If you know someone is having a hard time, send them a sweet card. Find something online that you can send to our soldiers. There are many sites that will ship it for free if you make a donation. And if you can't do that, well then just be nice to someone who seems like they are having a bad day. I know I look like a ginourmous goober all the time because I really do smile at strangers. It takes them off-guard. Aside from my occasional debu_bitching, I usually just try to be happy. It honestly feels good and immediately puts you in a good mood.

My Sis #3 and her b/f really appreciated the house cleaning. I plan on keeping it up. That way no one minds if I stay longer than a normal guest. Besides, they have been so good and sweet to me that I just want to help make their lives easier. I love them!

I miss my siblings. I wish we could all take a vaca together with all of them!

Sadness

My friend R in Iraq lost ten men on Father's day. Many wounded too.

Please say some prayers for them and their families.

Say what you will about the war, but soldiers just amaze me. He will forever be my hero. How could you not be in awe of someone like that?

... platoon has earned 12 purple hearts, three bronze stars, arcom with valor five soldiers medals for saving the lives of soldiers

God bless you, R.

Happy Birfday to Sis #3

Still vacationing, but have moved my act to Sis #3's casa. She and her cutie boyfriend are in Vegas and I am housesitting. I'm also a cleaning fool. She took such good care of me before when I was doing the chemo cha-cha, that I figured it would be nice for them to come home to a clean, well-organized home. I'm even taking care of her ginourmous dogs and her rabbit, appropriately named Bunny.

I need to get finished up before they get home, and also because I still have the financial aid paperwork to do. They are going to be all up in my biz. I bet they say I drink too much Starbucks. And they would be right. But since it helps with my headaches, I consider it part of my medication regiment. Maybe I can get my doctor to write a prescription for it.

I feel pretty good, but still have the cough. No fevers or anything else that would lead me to think it's an infection, but it's still bothersome to me. I'm also really damn sore in my hipbones. Lots of moving around and bending, etc, so I wonder if that is it. It's right where I have my bone marrow biopsies. It could be because I'm nearing the big 4-0. I was going to have a birthday party fundraiser, but I have decided that it's a pain to plan my own party. Not to mention too much work and not enough fun. So dinner and a movie it is.

I am missing Zoe like crazy, but am enjoying being alone for a change. I like the solitude and the not having to talk to anyone if I don't want to. I've been eating super healthy and I feel well. Although tonight I have had a hard time sleeping. I bet I sleep the afternoon away.

That's about it. Claire says she misses me. Well I miss you all too. I miss you all a whole damn lot.

Hugs to Claire, The SWLF Sisters, D1, Ctal, Meerkat, Dbanana, Paige, Cali Stephanie, Mrs. H, Linda T, Cody's Mom Bren, Emily G, Patrick P, GJulie (hugs hugs hugs), Dave, Dandees, Allison, Dawn, Dad (Happy Father's Day), Pam C, Robin, Traci, Miah, Sandra, Jake's Meridith, Day (get well soon), Collins, Ms. Pants, Sis #1 and #2 (Guatamala bound), Denise K, Cheryl, Amanda, Lisa, My ATC nurses, and nurse Vicki, Kami and Cami (Happy belated b-day to you!). Not sure who all has stuck around the joint anymore. It's been awfully quiet around here. And I still miss Brenda.

I want a date. I haven't been on a real date in a long long time. It makes me feel like a boy.

I can do this. My hair is insane, but I can do this.

Your assignment for today is to drink a lot of water. It was 91 here in Austin today and I swept the garage of bunny and dog hair all morning. I was wearing a mask and gloves, but damn it was hot. So I chugged a hot tub of water today. Refreshing! Plus it makes my skin look pretty. Which is good when your hair looks like a crazed camel.

Ah, What a Little Vaca Will Do

Fast entry. Sorry, Claire, my love.

On vacation in Austin.

Zoe's dad flew in and stayed overnight in a hotel with her. They flew to NY this afternoon. I had such a hard time saying goodbye. I hugged and hugged her up Tuesday. I miss her already.

I'm going to use this time for some R&R and catching up on paperwork.

This house has a view of a gorgeous lake. I'm here with Sis #1 and her family. Um. Awesome. So so awesome.

I feel better, but still have allergies.

I can do this, but will be making it short. Babysitting tomorrow so I need some "energies"

No assignment today. Enjoy some swimming if you can. I am!

P.S. Convo with Zoe.

"Mom, when we get to Austin, you need to check your bellybutton. Cos sometimes things get stuck in mine, so you probably have some too."

Love you internets!

Bahahahaha... I needed this today

Thanks to my friend Collins. She's the coolest!

WOMAN'S POEM

Before I lay me down to sleep,
I pray for a man, who's not a creep,
One who's handsome, smart and strong.
One who loves to listen long,
One who thinks before he speaks,
One who'll call, not wait for weeks.

I pray he's gainfully employed,
When I spend his cash, won't be annoyed.
Pulls out my chair and opens my door,
Massages my back and begs to do more.
Oh! Send me a man who'll make love to my mind,
Knows what to answer to 'how big is my behind?'
I pray that this man will love me to no end,
And always be my very best friend.

MAN'S POEM

I pray for a deaf-mute nymphomaniac with huge
boobs who owns a liquor store
and a golf course.
This doesn't rhyme and I don't give a sh*t.

The Battle of the Phlegm

I feel like crap.

Where's the vicks vaporub when you need it?

I think I have to see the doc.

Which sucks because I think I caught this mutating snot cold ouchie chest from my last doc's visit.

I'm really getting tired of these one after another colds. They are keeping me from working out. If my thighs get any fatter, I will start to moo.

Go see the movie Knocked Up. I won't tell you why, but it is funny.

I think I am going to go back to bed. Or at least try to.

My church lost a Deacon yesterday. Sonny had the coolest hair ever. A shock of white. And he was funny and nice. He was considerate all the way up to the end. Deacon S was driving and knew something was wrong. So he pulled over and ... just died. No crashing into anyone or anything. He had had several heart attacks before and surgery, but mom said (smiling) that "Now he can eat as many Oreos as he wants." Zoe and I prayed for him yesterday. Whenever I saw him, he was pretty strict about his diet, so I hope he gets a chance to eat whatever he wants now.

It was kind of sweet last night. Zoe read a book to herself before bedtime. I hope she loves to read like I do. I used to stay up nearly all night some nights reading a book.

Ok. Sleep.

I can do this. Even if I have to battle the phlegm again.

Your assignment today is to plant a flower (or buy some). Zoe came in yesterday to my room with this excited look on her face. She had been helping Momo plant flowers in the backyard. She opened her hands and they were as dirty as could be, and had rescued three little flowers that had fallen on the ground. She was filthy, and I wished I had a real camera for that one (my new phone doesn't take very clear pictures). That girl is a peach.

I love you internets!!

The Blehs

I had a bad reaction yesterday. I feel like caca poo poo today.

About an hour into the IV, I started having these low back pains - like spasms/cramps. The nurses say it feels exactly like what back labor feels like. I had the shakes a little and was supremely nauseated. I didn't really want to say anything, but the nurse knows me fairly well and knew that I was feeling punk.

They had already given me benadryl and some tylenol. After the spasms, they gave me some darvocet (I think) and some medrol. I was HIGH. Mom drove me there, so at least I had a ride home. Then I took Zoe to see the movie Gracie (a girl soccer movie which was ok, but slow - although worth it to see Elizabeth Shue and her cute bro, Andrew). Went to County Line, but I couldn't eat. Took home nearly an entire meal.

So today I was a big fat lamer. I have about zero energy and no motivation to do anything. Zoe and I chilled and watched The Pursuit of Happyness again. I think I need a dose of Kill Bill, so I might break out KB 1 & 2 tonight.

Anyway, that's about it for now. The highlight of my day will be taking a shower. Well that and the yum pancakes mom made for lunch: whole wheat with blueberries, yogurt, walnuts, and oatmeal in them. Delish! I had some New Zorleans coffee and I was in heaven.

I can do this. I think I will bust a move pretty soon.

Your assignment today is to sweat. Get moving today. Go plant something. Get thee to a beach or a pool. Walk. Run. Bike. Take your chirrins to a park. Or just play. If you do it, I will too.

Thanks Mrs. Gazz. I needed that email today. Not sure when the book will blossom, Claire. She's in there somewhere, I just need to crank her out.

Be Strange But Don't Be a Stranger

Yesterday. I slept. all. day.

"Zoe, what do you want from New Orleans?"
"I don't know. Something nice."

I bought her a t-shirt and a bracelet.
"Mommy, did you have fun in New Zorleans?"

NOLa haiku style

very excited
no drama at the airport
checked in all our bags

I wore my mask there
no TB jerk on my plane
easy flight for me

ativan for deb
a little wine for Diane
trash mags for Sis1

cab to the hotel
room not ready so we ate
weather was gorgeous

ate some italian
walked around and shopped a bit
chilled out in the room

then ate at NOLA
Emeril's food is the bomb
a tasting menu

I drank some wine too
that was some amazing stuff
I met the wine guy

[aside] There was this dude at a table wearing what appeared to be jammie pants. He had on this wild shirt to go with them. We could not stop staring as we were trying to figure out just what in the hell he was thinking. When I was in the can, before we were going to leave, Sis #1 and Diane talked to someone at his table. I came out and he came over. Turns out they were chef pants and his shirt had wine bottles all over them. He was part of this foodie convention and actually does a wine show on the radio in NO. He was cool and funny and I wish we could have dined with HIM!

I would have married
the person that made my cake
it was just that good

too pooped to party
we saved that for Sunday
shopped in the market

ate those good beignets
me sans the powdered sugar
roll me in the dough

looked at market stuff
bought a bracelet for Zoe
I was missing her

we chilled in the room
dressed up to go to Emerils
watched a fun movie

Emerils, so fab
had some great fish and more wine
dessert with coffee

it was food heaven
then it was time for some fun
shakin' our asses

watching:

my fav - Kabrina
jumped off stage in stripper heels
"I want some muscles"

that queen rocked her ass
naked dancing on the bar
not us but cute boys

weren't there very long
but long enough to feel free
free for just one night

I had a great time. I want to go again. Sis #1 and Diane were awesome. Thanks also to debu_Dad for the extra cashamatoma and to the Momo G for watching the chirrins.

Zoe goes to NY on June 12th. I think I'm just going to travel a bit this summer and not really do too much of anything except maybe correspond and workout and eat healthy. I went to the docs yesterday and I have gained six pounds since the last visit. They told me they are sure it's the meds I'm on as three of them cause weight gain. I'm pretty sure it's lack of movement. I miss the gym. But I'll get there. I feel it.

So so news as the docs. I have to spend all day there tomorrow getting the dreaded immunoglobulin (IVIG). My levels are around 270 and they infuse you if they are below 400. Normal people have around 700 or so. So my nurse said that it is pretty important that I go. For more info on IVIg, see extended entry.

I hate IVIg. 1st hatred - horking; 2nd hatred - bone marrow biopsies; 3rd hatred - IVig. It gives me the shakes and I feel terrible. They drug me up to the max to give it to me. And it can potentially have some awful side effects. I hate the stuff, but they say that it is "liquid gold." (at 10k a pop, it should be). But they say that I need it because my immune system is so puny, I can catch damn near anything at any time. And since I want to be roadtripping a little, I guess I better take it. *sigh* It is what it is.

I can do this. I had fun in New Zorleans.

Your assignment today is to give blood. Find out when you last gave blood and do it again if you are eligible. And some people don't think they are eligible, but they are. Double check. Don't go on rumors or myths. And if you aren't able, find a few people who are. See if the church has a youth group that gets service awards. Volunteer at a blood drive. Blog about the need for blood. Donate to your local blood bank. It never seems important until it hits you where you live. And it's hit our family just a little too often.

I miss you internets. Life is good, but has been a little rough lately.

Yay! Not

Immunoglobulin
IVIg (Intravenous Infusion of Immunoglobulins)

IVIG is a solution of globulins containing antibodies normally present in adult human blood. Globulins are simple proteins that provide immunity against disease. A protein is made up of several amino acids, which are the microscopic building blocks that make up all cells. IVIG is used as a temporary treatment to elevate platelet counts. Administration every 10 to 21 days is usually required to maintain adequate platelet counts. Response to treatment is usually seen in 8 days.

Each batch of IVIg is made of human plasma derived from pools of 3,000 to 10,000 donors. Because this product is developed from pooled blood samples of many different donors, it is theoretically possible that viruses or bacteria could be transmitted in the product. Since 1985, however, all products are tested for HIV and hepatitis. Immune Globulin comes in sterile solution and is administered intravenously. It is made in different strengths and sizes.

Side Effects

In general, adverse reactions to IVIg therapy are usually minor and occur in no more than 10% of patients. Mild-to-moderate headache, which responds to nonsteroidal anti-inflammatory drugs, is common. Chills, chest discomfort may develop in the first hour of the infusion and usually respond to cessation of the infusion for 30 minutes and resumption of it at a slower rate. Fatigue, fever, or nausea may occur after infusion and may last as long as 24 hours.

Other side effects include, dizziness, leg cramps, muscle aches and pains and pain and tenderness at the injection site. Side effects that should be reported to a health care provider includes, difficulty breathing, shortness of breath, wheezing, chest pain or tightness, seizures or convulsions. A severe anaphylactic reaction may occur in patients who have a serious deficiency of IgA associated with anti-IgE or anti-IgG antibodies against IgA, which react with the IgA in the IGG preparation. The reaction is rare occurring in about 1 out of 1000 people.

Immune Globulin Intravenous (Human) products have been reported to be associated with renal dysfunction, acute renal failure, osmotic nephrosis and death. Patients should be instructed to immediately report symptoms of decreased urine output, sudden weight gain, fluid retention/edema, and/or shortness of breath (which may suggest kidney damage) to their physicians.

While these reports of renal dysfunction and acute renal failure have been associated with the use of many of the licensed IGIV products, those containing sucrose as a stabilizer accounted for a disproportionate share of the total number. Gamunex does not contain sucrose. Glycine, a natural amino acid, is used as a stablizer.

There have been reports of noncardiogenic pulmonary edema, rare reports of hemolytic anemia, and very rare reports of aseptic meningitis in patients administered with IGIV. Thrombotic events have been reported in association with IGIV. Patients at risk may include those with a history of atherosclerosis, multiple cardiovascular risk factors, advanced age, impaired cardiac output, and/or known or suspected hyperviscosity. As with all plasma-derived therapeutics, the potential to transmit infectious agents cannot be totally eliminated.

Gamunex is made from human plasma. Products made from human plasma may contain infectious agents, such as viruses, that can cause disease. The risk that such products will transmit an infectious agent has been reduced by screening plasma donors for prior exposure to certain viruses, by testing for the presence of certain current virus infections, and by inactivating and/or removing certain viruses. Despite these measures, such products can still potentially transmit disease. There is also the possibility that unknown infectious agents may be present in such products. Individuals who receive infusions of blood or plasma products may develop signs and/or symptoms of some viral infections, particularly hepatitis C.

I put the fun in funky

It's been so weird to me to not blog every day.

I've been volunteering with the Leukemia Society and then did the bone marrow drive at our church on Sunday. We signed up six people. And while I should be happy to sign up those six, I'm actually a little bit insulted about the apathy I encountered. There are nearly 5,000 people that go to our church. 5,000. People looked at me like I was a Hari Krishna when I was handing out flyers after church. They couldn't wait to get out of there. At my church in Houston, we used to have events in the gym after mass and people lingered and talked to one another. Not so much here.

I know part of it is fear of pain. (Thanks Grey's Anatomy - you buttholes, it's not as bad as you just showed it on tv) Part is misinformation (thanks stem cell research controversy). But part is just the way people are. Throw money at something, but don't roll up your sleeves and really get involved. And like I said, I understand.

It doesn't hit you unless it hits close to home. When you have someone diagnosed with a chronic illness, you look at people and think... well you can donate blood, why don't you? You freak out with anger because there is nothing you can do for that person except to surround them with support and help in anyway you can, e.g. giving blood or platelets.

I can't stand to hear that someone can donate blood, but doesn't. But I've been there. I never really was too sure if I could donate or not as I was on insulin before and my diabetes wasn't in great control for a long time. And the one time I signed up to donate, I didn't because I was so exhausted. I think the only reason I was so lucky about the blood karma was that both my parents donated gallons. And when I got sick, my siblings and their spouses had blood drives and they all donated blood.

So, I've been trying not to take it personally, but it does feel personal. These people have so much power to make a difference, and they have no idea.

I've been getting ready for my trip to New Orleans with my sister. We drive to Houston on Thursday and will fly out on Saturday. I'm really nervous about traveling as a patient, but when I'm with Sis #1, everything is just cool. She's made reservations at some cool places for dinner. I'm just looking forward to the weekend.

School is nearly over. And while I always miss Zoe so much when she is gone for the summer, I am looking forward to some free time. I'm planning on traveling to Austin an Houston. Just chilling out