Since I have so many lovely newbies around here, Sis #1 figured I should post a little of what Debutaunt.com is all about.
For those new to debutaunt.com. Kind of like trying to do a recap of Lost for those who haven't watched the show before.
I will take the title bestowed upon me by my beloved Shoshie as the Queen of Delft, although it does say Queen of the Universe on my checks. For real. I thought I'd see if Bank O' America would actually print that on there, and they did.
Anyway, in the extended entry is a little who what where when... well, you get it.
(updated 11/2006)
I'm Deb. Aka The Debutaunt, aka Debster, aka Aunt Debby. I'm a single mom with a sweet 8 year old named Zoe. My blog was started as just a way of blowing off steam and just to blather about stuff that was funny or disgusting or whatever. I have 6 siblings - 3 brothers and 3 sisters. I'm super tight with them. I don't call them by name, but I usually say Sis or Bro #1, 2 or 3.
Generally speaking, I've discovered that it is better to have a blog that is kinda like Seinfeld. Funny stuff mostly about nothing. And that is how it was for a while until my new adventure started in October.
On October 21, 2005, I was diagnosed with Acute Lymphoblastic Leukemia (ALL) that is Philadelphia Chromosome positive (PH+). Between October 2005 and February 2006, I had five rounds of chemo. I was then going to have a stem cell transplant (aka a bone marrow transplant) because of the PH+ diagnosis. My oncologist said that if I didn't have the transplant, I'd definitely relapse and die (that's how she said it). I lucked out in that my younger brother, Bro #1, was my 100% match. (only about 30% of recipients of transplants have a related match.)
A little less than 4,000 people in the United States get ALL each year. Most of those people are children. No one knows what causes ALL. I have no idea how I got it, and didn't have the typical symptoms, but I went to a local ER with a raging headache. The headache turned out to be a nasty sinus infection, but the bloodwork showed that my white count was 117,000. Normal is between 3 - 11,000.
When I was diagnosed, I was told that my daughter couldn't live with me any more because of the risk of infection (kindergarten cooties) Zoe lived with Sis #2 and her family for nearly 9 months. I think being apart from my Zoester was much harder than the cancer treatments.
On Sunday, February 19th, 2006, I was admitted to the hospital for a stem cell transplant. It is a serious, scary, and fairly rare procedure, but it is the best treatment for my form of the disease and hopefully will forever be my complete cure. I had four days of full-body radiation and chemo that is nicknamed Hiroshima. I was in the hospital for about a month. It was a horrible treatment to go through. (Not too bad for Bro #1 - as it was like giving platelets for him). I tried to write my way through it, because I equate it to childbirth. The longer you are out from it, the less you remember of it.
In May I contracted encephalitis - which is the swelling of your brain. It was bizarre and I was in the hospital - hallucinating, delusional, and paranoid for about three weeks. Why people do drugs on purpose, I'll never know. I feel completely lucky and blessed as I have had many friends these past two years die of post-transplant related infections and diseases.
I am currently in remission and pray that I stay that way to live to be an old old lady. An old lady who is completely dorktastic.
In the meantime, I'm just growing out my hair, recuperating, making observations about what is happening and trying to focus on the positive and absurd stuff that could possibly come from this experience and share how much we should appreciate life - everything little and small, joyous, precious, amazing, silly, frustrating and annoying. You can take nothing in life for granted - so choose to enjoy it the best you can with what you have.
Anyhow, I have had a lot of people email me about providing a link that says all the ways they can help with the stuff that is going on, so here goes:
1. Financially. Uh, this part is no fun, so I will just say it plainly: I was on leave from my job and lost it in May 2006 (they can only hold it for so long). I and am not getting paid and still have some hefty bills. I now receive Social Security Disability, but it sure doesn't go a long way. My bills are kicking my butt - mostly medicine expenses - I still take about 40 pills a day.
In August 2006, I moved back to San Antonio to live with my folks (yay - at age 39 after being on my own for nearly 20 years). They are awesome, but don't have gobs of extra money to pay for my bills and expenses. I'm currently trying to find out a) what exactly I owe (lots of lab & doc bills), b) what my insurance didn't cover and c) how to balance the money I receive and figure out what I do owe to get out of debt.
I will be on anti-rejection drugs for a long time. They suppress your immune system, so I'm not really able to work yet. I also get super tired sometimes and can't do too much. My immune system is working, but not very well. I avoid crowds, kids, and funky restaurants. For the most part, I'm doing pretty well, but I have days that just kick my butt. I have what is called Graft vs. Host disease (Google it) in my stomach, skin, mouth and eyes. It's controllable, but I have had friends die from it.
I've read somewhere that it is always easier to give help than it is to ask for it, and I have come to learn that this is absolutely true. It is hard to rely on the generosity of others after being someone who has been very self-sufficient
So if you want to make the most impact on my life and Zoe's please...
Send checks to: Stephanie Stradley
Deb Fund
Stradley, Chernoff & Alford, LLP
1018 Preston, Suite 200
Houston, Texas 77002
Pay to the order of: Stephanie Stradley [sister of Deb]
If you have any questions or would like to make an online transfer, please contact Stephanie at (713) 222-9141 or email debfund (at) comcast.net (replace the at with an @) for additional information.
If you would prefer using Paypal for a bank or credit card donation, please click on this link or transfer it to your internet browser window:
Or go to www.paypal.com, and send money to debfund @ comcast.net
OK, enough of the ick money talk. Sorry about that and wish I had more alternatives.
Just as an aside, our society isn't set up so well for people who have really bad illnesses happen to them. Short term disability insurance is extremely expensive, and often doesn't cover you if you can't demonstrate to the evil demon insurance company that you are unable to do any job of any type. And if you had a job before you were ill, you can't say to the government that you are poor enough for aid, because they look at how much money you made before you got sick, even if you make no money now. Long term disability only covers the difference to the % of your salary (if you get it) that Social Security Disability pays. So basically I used to pay about $58 a month for long term disability for four years, and now I get about $100 a month and have to prove numerous times that I am still disabled. Paperwork is the debbil.
This is what I am absolutely passionate about:
2. Blood/Platelet Donations. Many, if not most, people with cancer undergo chemotherapy, which can temporarily reduce the number of circulating blood cells. The fatigue most cancer patients experience is caused in part by low levels of red blood cells (anemia), which carry oxygen to muscles. This is particularly true in patients with blood-related cancers such as leukemia, lymphoma, or myeloma, in which the disease itself can dangerously lower the body's production of blood cells
When my counts were low, there were a number of times where I had to wait for platelets or blood until after surgeries were completed due to shortages. There are shortages every day they tell me.
If you live in Houston, you can make a blood or platelet donation at MD Anderson Cancer Center. Also, if you can, you can request the MD Anderson Mobile donation center to come to your place of business by calling (713) 792-7788.
If you live outside of Houston, well, just donate blood if you are able. I had over 20 blood transfusions and about 14 of platelets. You might save someone's life. As many "someones" saved mine.
3. Prayers. I'm taking as many as I can get if you know what I am talking about. I still love being prayed for as I fear relapsing. Pray for my continued healing and that I can help raise money to find a cure for this horrible disease.
4. Donate to the Leukemia and Lymphoma Society. Or participate in one of their events. I'm trying to raise a million dollars in my lifetime. I'm just stubborn enough to do it. Here is a link to our donation site.
5.Sign up on the bone marrow donor list. Especially if you are a minority. Less than 6% of the registry is made up of minorities. You don't even have to give blood to sign up on the list. They can do it through a cheek swab. If your pregnant, look into donating your baby's cord blood to the national registry. You can find information about both at www.marrow.org.
6. Spreading the Word. If you know any other people who would like to help me with my fight, link them to debutaunt.com. The power of the internets is a funny thing - some of the bestest support I have received have been from people I do not know. And there is nothing better than getting funny terrific comments in my blog.
Anyhow, my Sis#1 told me about a sermon she heard at her church. After Hurricane Katrina, her pastor did a talk about why bad things happen, and he said that he didn't know and hated to speculate, but what he did know is that God loves us, and wants us to be part of a community of people that helps each other. That as a human, you are to help others, and that even when it is difficult, you need to ask for help as well. That we are not islands. Some people in modern society think that churches are not relevant, that it is OK just to have a personal relationship with God, but I do think that as you grow and see the good and the bad of the world around you, it makes you realize how much having such communities to help is important, and how it is important to reach out to others, because that is what God's love for us is all about.
Not meaning to proselytize or nothing, but in the words of the not-so-successful-governor of Texas, Kinky Friedman, "May the God of your choice bless you."
Thanks for whatever support you can offer. It means more to me than I could ever express with words.
I love you internets.
And, as always, I will say (with your help) I can do this!!!
Posted by debutaunt at February 22, 2006 03:32 PMDeb,
I have only been reading you for for a week. However, you have been in my thoughts daily.
You forgot a few things about yourself, you are funny, you are strong, and you are going to kick this cancer's ass like Uma.
Posted by: Missy at February 22, 2006 04:15 PMYou will continue to be in my prayers. {{HUGS}}
Posted by: MommyMe at February 22, 2006 04:16 PMDo I still count as a "lovely newbie" if there was info on here that I didn't know?? Even though I've been commenting for awhile?? ;) 'Cause I like the sound of being lovely and new, just like you're going to be after this transplant has succeeded in evicting your leukemia. Thanks for sharing so openly with us. Go, Deb, Go!!
Posted by: eclectic at February 22, 2006 04:24 PMHi Deb~
[raising my hand] I am one of the newbies ... I am so glad I found you. You are such an inspiration. Your courage and determination just shine through your words!
I give platelets regularly at Carter Blood Care and I will ask if they have a reciprocal relationship with MD Anderson. I assume I will need your full name?
Stay strong!
Posted by: Erin at February 22, 2006 04:51 PMHi Deb
Congrats on your new room with a windows. there is nothing like waking up to the sun and watching the moon at night when you can't sleep. You and your sister did good.
Thank god and congrats on catching the major mistake by the med nurse. you have to keep an eye on the meds at all time, have them read the name and the dose each and every time they give you your meds. you know BEST.
Again keep up the good work
Nancy
I had to catch up on all the writing you
did today. Let's hear a big round of applause
for Sis # 1 for scoring a bigger room.
Sis # 2 for bringing back the the movie Airplane.
One of the better older movies for a great laugh.
I see Shoshie did indeed find you a name. I knew
she would come through for you.
You can switch on an off betwwen the two names.
Queen of the Universie and Queen of Delft.
But I must add one more title to your growing
list. In my eyes you are the Queen of Courage,
the Queen of Laughter, the Queen of Love.
And above all you will be The Queen who will
stand up and say to all your loyal subjects.
Today I am the Queen of Cancer Free. The world
will celebrate. (no hot dogs ok)
Now the Yiddish Yahooooo is going to be
AWOL for a few days. Which means I am going
to have to post a whole lot and pick up
her slack. I can't do the Yiddish. You will
have a reprieve for a few days.
You are just the best!
Love,
Nikki
Thanks for taking time to do this, Deb. There were things here I didn't know. I did stumble onto the verse here the other day, though, you know it: "I can do all things . . . " Yes, you can. Yes, you will. And we will do all we can to help.
Posted by: Susie at February 22, 2006 09:15 PM3 cheers for a bigger room. Now you can unpack
and find your fun stuff.
Some of these "newbies" are friends of our's.
Like Traci, Susie, Eclectic. They are super
nice people. Some of the other's are Shoshie's
pals, that I don't know so well.
I do know they were are best buddies, and
continue to be our buddies. I don't know
what we would have done without them.
They loved us when we were crabby or
having bad day's. They loved Sarah every
day.
My entire family pray's for you every
day. When you have a big family like you
do and we do. You learn it's OK to ask
for help. We all need help in different
ways, in different times in our lives.
God put us on earth to give back. You
give so much to us. I hope we give something
to you.
Love,
Lisabeth
Maybe I will try and do the Yiddish while
Shoshie is gone. :)
Awwww, Lisabeth, your words got me weepy again. It's not too hard to do these days! Geez. I, for one, am loving the Yiddish lessons! Deb, I am honored by your courage today in asking for what you need. Such a special soul you are. I think of you every day and whenever you cross my mind I say "Deb, I know you will make it through this." Enjoy your bigger room Ms Queen. I'll be back tomorrow!
Posted by: Traci at February 22, 2006 10:18 PMp.s. i LOVE that I get to be a newbie!
Posted by: Traci at February 22, 2006 10:19 PMDeb, Here is just a tiny blurb about the town in Holland you are now the Queen of- Delft is a crisscross of canals, cobbled alleyways, classic mansions, arched bridges and medieval buildings, Delft is one of Holland’s best preserved towns. The birthplace of 17th-century painter, Jan Vermeer, Delft is as striking as one of his painted landscapes.
When you are "sprung" from the Ritz (M.D. Anderson)
and are well enough-you will have to travel and
meet the folks in your kingdom.
I hope you slept well in your new room. I hope
the new room with all the big windows is fitting
for the Queen. As always kiddo go get them
today. I am off to save the world (ha ha)
but I will check on you later from work. Shoshie
will beat me if I don't post for her. You will
be sick of us and who knows they may move you
to the pscyh floor because we drove you nuts.
Your mission today-see if you can watch Jerry
Springer, drink lots of H20, take your walk
(damn I am impressed with what you have done
thus far). And squeeze that foot on the monkey
several times.
Love,
Nikki
PS NOT A NEWBIE
See, that Nikki's just showing off the fact that she found you first. That's not very gracious of her... but I owe her, since she's the one that brought you to my attention. So, I guess I'll overlook the bragging...! ;)
Good Morning, Debu-Highness, did you sleep better? Did they leave you alone so you could sleep? Damn the vitals, anyway! I think you should make a proclamation that vitals are banned from your kingdom during the Queen's sleeping hours. Think it would work? I ate chocolate this morning in honor of you -- I NEVER eat chocolate in the morning. But, it was sort of like a religious ritual, it had to be done.
Your assignment today (can I give the Queen an assignment?) is to smile... a lot... at everyone you see. Because when they see you smile, they will naturally smile back. And I think maybe you could use a few extra smiling faces today. Hugs,
~Shari
Hi, I'm definitely a newbie. Eclectic sent me over to wish you well and I hereby, wish you well. Best of luck with your recovery, after all, leukemia shouldn't be able to stop the Queen of the Universe.
Posted by: zuhn at February 23, 2006 10:47 AMCame here through Eclectic. What a beautiful, thoughtful post.
Posted by: Amy at February 23, 2006 10:51 AMThanks for the recap...I have been reading through your archives, but that really brought me up to speed. I just came upon your site Monday 2/20 and have visited every day this week and I plan to continue. You have been in my prayers every night. I think we are the same age, or close to it and diseases like this scare the crap out of me, as they do not discriminate! YOU my internet friend though are funny, strong, and loved by so many, you WILL come out of this!! Zoe is absolutely adorable :)
3 CHEERS FOR HER MAJESTY!!! HIP HIP HORRAY HIP HIP HORRAY!!!
Way to go Queenie!! Atta girl demand your rights. Seriously, I'm glad your patient advocate was notified. She/he needed to be.You are not asking for anything extraordinary. I am sorry about the boobie thing though. Just try and pretend you are posing for the latest playboy centerfold!! and give them a real sexy smile!!
Enjoy your new room and keep a tight reign over your domain!! I shall eat a veggie wrap in your honor today.
Love, Cami
p.s. since you are the Queen of Delft, would we be Delfites or Delfinians?????? point to ponder....
I am sure you already are, but have you spoken with your LLS patient services manager? They have patient services money that you can get - 500 a year, not much, but it helps.
Posted by: Missy at February 23, 2006 01:17 PMi think we should be Delfinians. And yay for the windows, Deb.
Posted by: kristin at February 23, 2006 01:54 PMYou are such a beautiful person. I am so happy Eclectic sent us your way!!! You are in my prayers.
Posted by: chia at February 23, 2006 02:43 PMContinued prayers being sent your way. . .
Posted by: Nina at February 23, 2006 03:39 PMDeb,
To try and fully understand everything that you are going through, just blows me away. Your strength and courage are awe inspiring! Thank you!
Nuff said...(before I start getting sappy here).
Posted by: jlybn123 at February 23, 2006 05:28 PMHey you! I've been coming by for a short time, Susie led me to you a few weeks ago.
I just love the assignments, and when i've done them, I think of you. You are in my prayers and thoughts.
Posted by: Dawn at February 23, 2006 06:12 PMI've commented frequently, but I think people I know in real life read here, so I have to post anonymously this time.
I have 2 different diseases that I should be being treated for and am supposed to be on 6 medications a day, but I have no health insurance so at least for now, everything goes untreated. There are no free treatments, and there is no free medicine.
I make too much for social assistance, but I can't afford milk. Our system is seriously flawed.
One more thing - I think a lot of people (just me?) have a lot of questions about what you're going through, emotionally and physically. Maybe you could offer up a day or two where folks can ask whatever they want anonymously without feeling ignorant and insensitive.
Also, I really think you should submit a book idea about this part of your life to a publisher. I have been reading your blog since well before your diagnosis, and I'm not lying when I say if this blog were a novel, I wouldn't be able to put it down. I't couldn't hurt, and it might help a lot.
Posted by: Anywhere but here at February 23, 2006 11:57 PMYou can TOTALLY do this!
Posted by: kalki at February 25, 2006 09:54 AMHi Deb, susie sent me.
You have my prayers, and happy thoughts. Please know that there are so many people out there supporting you, so go kick ass!
When Susie commands, we perform!
Sending happy thoughts and prayers your way.
Hang in there.
Posted by: candace at February 25, 2006 12:46 PMSusie sent me over to tell you that Big Ernie and I are rooting as hard for you as we can. (And I will tuck a little something into your Christmas stocking. Good luck, Universe Queen.)
Posted by: old horsetail snake at February 25, 2006 03:35 PMHi Deb. Susie sent me over. I just wanted to say hi and let you know you have one more person praying for you. Stay strong.
Posted by: jomama at February 25, 2006 03:50 PMHi, Deb. I'm hear through both Eclectic and Susie. Thanks for the whole explanation of your situation. You really have kept your sense of humor through this time of your life.
Many prayers going out to you.
Posted by: Squirl at February 25, 2006 06:06 PMThinking of you and praying for a speedy recovery.
Posted by: william at February 25, 2006 06:11 PMI'm a year long lurker sent by Susie. This is my first comment ever. I've donated blood and platelets many times in the past. Each time I pray it will help.
Next time it's all for you.
Five points of light and palms and hearts and exploding things and prayers are being sent your way. (In a good way!) God be with you.
Hey Deb,
My 7 year old son Jarrett was diagnosed with Hodgkins Lymphoma. He just recently completed 6 rounds of chemo and is now in remission. I know the power of prayer and I will be praying for you. Your upbeat spirit and positve attitude will affect people in ways you will never know.
On the lighter side...
A ship's captain noticed a cloud of smoke rising from an uncharted island. He took a boat ashore and he noticed three small huts on the island. The captain was greeted by an excited castaway.
He asked the man, "Where are the other people?"
The castaway replied, "Oh, it's just me!"
The captain then asked why there were three huts.
The castaway stated "Well, I live in that hut there on the left. I go to church at the one in the middle."
The captain, of course asked what the third hut was for.
The castaway replied, "Oh, that's where I used to go to church."
Take care Deb, and go Texans :)
Posted by: Stan at March 1, 2006 09:16 PMbe strong you can make it by Gods Grace
Posted by: tom at March 28, 2006 03:48 PM