Dread. I dread that meeting. All my anxiety and fear. All my worry and sadness. All waiting to meet with Dr. Q and my transplant team. So many months of thinking about this meeting, and today was the day.
I am sitting there. Screaming in my head. Waiting for the doctor. And the only urge I have is to throw up. Like major hork action.
I busy myself and start reading my Bone Marrow Transplant Bible. It's a book that tells you all about the whole process. It has page after page of definitions. I'm reading about Graft vs. Host Disease. Stem Cell aspirations. Caregivers. And I feel like I'm about to pass out. I'm trying really hard to pull my shit together. I'm trying not to pass out, barf, and scream all at once.
I text Monkey Boy. I close the manual. I breathe. I focus. I Uma.
Dr. Q comes in and we talk a bit. Sis #1 asks all the legit questions and I feel like Shecky the Clown or something. Making jokes to mask my fear. We then talk to Amanda, my awesome transplant coordinator, and she fills us in on all the specifics.
I have to be four weeks clean of any chemo drug before they proceed with the transplant (e.g. because then I will get some heavy duty chemo and full body radiation aka the part where they kill me). But they don't want me to be too far out from the last chemo so that the disease doesn't have an opportunity to come back.
So it comes down to my leukemia doctor, Dr. T.
Do I go in tomorrow for Round 5 or do we proceed towards the transplant?
So. Here I am. I'm packing. I get admitted tomorrow for Round 5. Five. Five. It looms large. I feel like I just got out. Which, pretty much, is true.
The chemo doesn't get me, but the lonliness does. And I sure as fuck better figure out how to get over that before I get admitted for my transplant. I am coming close to finding the end of the internet.
And then I logged in. I sat here and read your comments through tears. Love. I thank you for the love. There is no way to express how much it all means to me. I get sad and then I read... "stay on target" or the love and support of the many strangers sent my way. Like old friends, they are.
I am going to bring my Kill Bill video. It's been a long time since I've had a dose of Uma to go along with that dose of chemo.
I can do this. I have you.
Your assignment (hey, two posts in a day) is to get dressed up. Dressier than normal. Like when you show up at work, they will think you have an interview somewhere else. My chicas, I want you to wear makeup and something sassy. Or if you are a dude, some cologne and a shirt you had to iron. And I want you to go through your day with your head held up high, feeling and looking good. I pulled a fake it today. But I pulled it off. And this day is now over. And I feel relief.
Be fabulous today. Because you all make me smile.
Oh. It's a close race.
I may not inspired you, but I'm often quite the dorkfus.
Today I found out that I got credit for fourteen units of blood/platelets. How cool is that?? I'm sure there are some unaccounted for, but I still think that's damn awesome. I know that when I'm sprung and all well, that I can truly make a difference and I plan on getting a lot more blood from you people.
Posted by debutaunt at January 18, 2006 08:13 PMOh so you got the big old book today. Let your sister's read that book. You have one job-get psyched, get mentally prepared, and kick ass.
Now we will try and hold your hand via this blog.
Maybe that will help with the loneliness. Watch
the Wizard of OZ after you watch your Uma flick.
Dirty Dancing is another good one. My crew will
give you online Yiddish words to learn.
I will put Shoshie in charge of your Yiddish word
a day.
I can't wear anything to sassy to work :( but
the makeup I can do.
I hope you can sleep tonight.
Nikki
Posted by: Nikki at January 18, 2006 09:24 PMWell, shit. I was just checking in here before bed. But if I'm gonna get dressed up tomorrow, I have to go do some laundry now.
Blame Nikki for the increase in wackos coming to your site. It could get weird ;)
You're not alone. Your blog is up for "Most Inspirational," and fucking look at that, it's even winning. You can't be alone when you're up in everyone's heads and hearts like that. In fact, it's a little crowded even.
Posted by: LK at January 18, 2006 10:20 PMI got a note from Nikki and had to come here. I know what it's like to go through all the emotions of fear and dread, and though my story had a happy ending, I remember that time all too well.
Prayers are with you tonight and as you go through your day tomorrow. Be strong, have faith, laugh, and hold loved ones. I'm thinking of you...
Posted by: Lori at January 18, 2006 10:21 PMI'm going to commit myself to making sure I call you daily to check in, and this weekend I'm going to come and see you in person. That is, if you'll let me. :D Because I can't see you if I don't know where to find you. But seriously, I want to be there. Anything I can do to help...
Sending you lots of love, positive thoughts, prayers, and good vibes to lift you up.
Posted by: Christine at January 18, 2006 10:44 PMNikki sent me here and I'm so glad! God I hate cancer. I want to tell you that I'm glad you are not feeling too paralyzed today. My mom has cancer and has been frozen for two and a half years. She does NOTHING. Nothing at all. It's sad. I'm glad to see you ready to kick some cancer ass and take a few names while you're at it! You go girlie! I will be here cheering you on all the while. Peace.
Posted by: Traci at January 18, 2006 10:49 PMI have been called upon to introduce you to the
Yiddish word of the day Club. This will be fun for you or I hope it will be fun.
The word today is "plotz" which means explode.
Throw that around when your getting your chemo
tomorrow and say it with some drama.
Shoshie
"Your Yiddish Teacher"
Pssst... I'll give you a call in the morning as I drive to school - I posted about donating tonight and I want to make sure I have all the info someone might need to get the credit to you.
I would love to post it to the H-Town e-mail list too, if you don't mind. Let me know.
XOXOXOXOX
Posted by: Christine at January 18, 2006 11:28 PMI love you man. You are fucking strong. AND NOT ALONE! And don't you forget it!
Posted by: Katie at January 18, 2006 11:36 PMI find you very inspiring, so you do get my vote. As well as all the good thoughts & prayers I can muster.
Posted by: Nina at January 19, 2006 12:29 AMI jumped a bunch of links and blogs for some reason tonight, and when I got here I knew why. I am very pleased to meet you, and look forward to reading your words as you have time to write.
Tonight when I'm at work, I'll be thinking about you, wondering what you're up to, watching, reading...you'll be taking my mind off my little world for a while, and I'll be grateful!
And really, there are times when if you feel like screaming, you just gotta let it out! Do that in the auto assembly plant and odds are you won't turn a head of course...you might get a different reaction where you are!
Thinking of you!
alan
Posted by: alan at January 19, 2006 03:38 AMHi
Just wanted to let you know I have today begun the process for registering as a bone marrow donor here in Cyprus.
I have been following your story and I just wanted to let you know that you have inspired me to do this and I wish you lots and lots of love and best wishes.
You Will Beat This!!
Thinking of you.
xxxx
Posted by: anna at January 19, 2006 03:45 AMLove Shoshie's word of the day..if you're needing a candy of the day I'd be glad to review all good candy choices out there..lol
sorry it's early and i'm just getting the first part of my coffee into my brain..
Today is the day for round 5..I'm going to work and dressing well-and thinking of you all day..Uma has a new man I just read..she is awfully happy about him being whatever it was that Ethan was not! many hugs for you today--when you get nervous- close your eyes and let yourself feel them..we're all sending them!
Leane
Bravo!
I'll be thinking of you today.
When I need to feel brave, I wear boots! Power boots! Whatever it is you need, I hope you find. And if that's us, well, you got it!
I don't know that there's anything entertaining I can think to do each day, but I'll be here checking in at least!
You're very brave and strong and I feel honored to be getting to "know" you.
xoxoxo
Posted by: clandestine at January 19, 2006 07:20 AMYou make me want to give blood again, which is not an easy feat. The poking and prodding to find my non-existent veins, then finally using the big slow one that never seems to fill the bag up...and then they have to throw it away. Then me crying in frustration.
I'll try it again...for you.
Posted by: ieatcrayonz at January 19, 2006 08:00 AMIn your honor, today I am wearing way too much Old Spice and a touch of blush.
Posted by: D at January 19, 2006 08:05 AMSusie tipped me off that this was a good place to come, and since she's never steered me wrong before, I thought I'd meander over. She was right., I feel better for having stopped by and for having (sorta) met you, in that way we all understand but can never explain to non-geeks.
"But you don't REALLY know her."
"Sure I do, I just don't know her in PERSON." "So, you can't really call her a friend."
"Sure I can - just not a friend I can, you know, physically touch."
"I don't get it."
"I know. Now, go to bed. I'm just gonna check my e-mail."
"So, you'll be up in what, four hours or so?"
"Not this time. I'll be right up. No, really."
"See you in the morning."
I'm sure that's a totally foreign conversation to everyone and only happens to me.
Anyway, lovely to visit, and I'll be back. Let me leave with some wisdom - because I am, above all, a wise guy - from my favourite Danish poet, Piet Hein. On the nature of courage, he says:
To be brave is to behave
bravely, when your heart is faint.
So you can be truly brave ...
only when you really ain't.
Susie sent me, although I resent being called a wacko! (Okay, not really.) I've only just met you, but you have taken up a permanent residence in my thoughts.
Posted by: kalki at January 19, 2006 08:44 AMI hope you learned the Yiddish word from last
night. Now I am sending you a new one for
today. You will have two for the hospital. The word is mitsve (sounds like mits-vah) it means good deed. You writing this blog is a very good mistve. Our friend Susie is sending lots of people your way. We hope all these fun loving crazies will entertain you.
Shoshie
Posted by: shoshie at January 19, 2006 08:56 AMY'know, I musta known that you were going to give the "get dressed up" assignment because I'm all spiffed up today--dk green blazer with shiny brass coloured buttons, tan slacks (and they fit good) and a nice white button down--yesterday too a nice dress--long navy button down with white sleeves and a pearl necklace...
Just popping by to wish you well and let you know that you're in my prayers!
Posted by: Effie at January 19, 2006 09:16 AMBy dressed up I am going to go with CLOTHING today - been in jammies with the flu all week, so this is the best I can do. Oh, and clean undies - how's that for somethin' special?
WOO HOO. We are all thinking of you, chica. Get through round 5 and then we're off to the races!
Cheers!
Posted by: sally at January 19, 2006 09:27 AMFive will be your new lucky number. You can do this, and when you're done you'll do things with your life you never dreamed possible.
Posted by: cursingmama at January 19, 2006 09:33 AMYou are simply amazing. That's all I can say.
I wish you all the best.
Posted by: Lisa at January 19, 2006 09:43 AMHang in there! You have come so far and have done so well!
And if it means anything to you. I work with a lady that had Aplasticanemia, which they treat like leukimeia. She had a bone marrow transplant a few years ago and is doing great! She goes up to MD Anderson every few months to get checked and she is free and clear and has been for a few years. I'll have her email you to help you through this. She has been there and she made it. So can you baby!
Posted by: Alison at January 19, 2006 09:53 AMI met you once...I'm Christine's Mom. I'll be glad to donate some blood/platelets for you since she can't. Tell youf folks to give us a call sometime. Will be keeping you in our prayers and thoughts. Keep on smiling...
Jeanette S.
You're amazing. Your words captivate me and make me laugh and cry simultaneously. Stay strong and kick butt today. We all love you.
Posted by: Carrie at January 19, 2006 10:16 AMSpiffed up, as ordered. I'm even wearing jewelry! (I never take time for that...) Thinking of you ALL DAY, and trying really hard to learn Shoshie's Yiddish words!
Posted by: eclectic at January 19, 2006 10:26 AMHey there... Stay strong and positive. Will be sending positive thoughts your way!!!!
Oh well see I didn't see the assignment till today.. so I didn't get to get all dressie and wear makeup.. maybe tomorrow. Unless there'll be another assignment?? I'll try to keep up.
Posted by: Twixie at January 19, 2006 10:35 AMI'm so glad I nominated you at the BOB's. You have always been an amazing inspiration for me.
At any rate, I was all sad and depressed that i couldn't do the assignment cause I'm a middle-aged (ugh) frumpy mother of 4 (think about what 4, and let's be honest, it isn't the kids, but the eating AFTER the kids, do to your body) and couldn't imagine getting dressed up. But then I read Sue?'s comment about getting dressed and since all six of us have been in one stage or another of flu for the past (what seems like) month, today I'll get dressed and call that good.
Maybe I'll even go to the thriftstore and BUY pants that are really pants and not something shapeless you pull over your bottom region. :)
Stay strong Deb! You inspire me more than you know.
Posted by: kathy at January 19, 2006 11:31 AMOh sweetheart...Just remember..
One step at a time...
Thinking of you and remember one more down, less to go..
Minerva
Posted by: Minerva at January 19, 2006 11:43 AMThinking of you today and hoping that things are going well. Though it's cloudy and chilly here today, I know the sun will eventually come out. And for you, it will too. God bless...
Posted by: Lori at January 19, 2006 12:07 PMI must have gotten your memo cause I wore a suit I bought 5 years ago full price-a real suit-suit-today for some reason. Mainly because it fits now.
Prayers coming your way Deb!
Ok, this is weird because i don't actually know you, so take it in the spirit of blogness and kick-ass: Love You Deb. Hang in there.
Posted by: Islay Girl at January 19, 2006 01:30 PMSusie sent me your way and I would like to say "You Rock." Assignment of the day-how cool is that. I will hope and pray that all goes well for you.
I am more of a lurker than a "wacko". But I do like to let people know first thing that these words have been muttered more than once: "that girl just ain't right." But I will try and behave.....
deneen-lover of all things Bob Seger and chocolate
PS: Is it just me or is there far too many of "" used in my post?
Posted by: deneen at January 19, 2006 02:22 PMYou are such an inspiration :) I hope this time isn't so lonely this go around!
Posted by: Anna at January 19, 2006 02:24 PMHere from Susie's place. I just might have to add you to my favorites, which I recently actually had to shorten because I was spending way too much time online! But your story is an encouragement to me...and I love your assignments :) Many, many blessings to you.
Posted by: Andrea at January 19, 2006 02:25 PMSending you buckets of love and many many prayers. I cannot tell you how much your "assignments" have changed my life. As a busy working mother of two (who's husband is frequently working late or out of town) I let myself get so stressed over stupid stuff which is a total waste of energy and not good for me or the kids. Hang in there Deb - you can do this and you WILL.
Hugs
Nothing's going to beat you down, kid. You've come far and you can see it through the rest of the way. Put me down as one of your cheerers-on.
(Best I had was some after shave lotion. Guess it will have to do.)
(I'm here from Susie's place.)
Posted by: old horsetail snake at January 19, 2006 02:53 PMOne more thing, Deb. A lot of the Neuroblastoma patients end up with bone marrow transplants. If you're interested, I can email you many links of many journals written by the parents and you can "see" their experience. (journals written by parents because Neuroblastoma hits the under-4 crowd more than any other age)
Posted by: kathy at January 19, 2006 03:58 PMI had some bad news today but I come here and put it all into perspective, which I have been doing for the past two months. Tonight I put on my make up, dressed up and made the best of it. I am in a lucky position to do so.
Relating to your last post, sadness is unbearably heavy, when it goes on day to day and numbs your very being. After my father died after a long and protracted,painful illness for the whole family. I visualised my sadness as a huge heavy ball which I pushed to the top of a sreep hill everyday. After a while it worked and to my surprise in time I got happy again.
Tonight I think you are the most wonderful thing on the whole web. I willing you to get better.I am willing you courage, you which you already have by the bucket load. Sleep well.x
Posted by: Lynne at January 19, 2006 05:25 PMSusie sent me here. I promise to dress to the nines tomorrow (real clothes and makeup) for my kids and not to resort to yoga pants and a t-shirt while cleaning. My husband won't know what hit him.
I'm going to have to do some digging in your archives to catch up but I'm already in awe of your strength and sense of humor. {{{hugs}}}
Hello Deb:
I know your at the Ritz (the hospital) hope
you are getting 5 star service. Look at all these
great comments you received today!!!! I sure hope
these help. All of us in blog land are sending
you are best. I think we should just start calling you DEBUMA. You are going to get through this.
Goodnight Houston!
Nikki
Posted by: Nikki at January 19, 2006 09:22 PMSusie-Nikki sent me, but I remember you from Operation Panty Drop. Howdy!
I'm eight months pregnant and haven't touched makeup since June. I'll do it tomorrow, though, in the name of kicking cancer's ass.
This is monumental for me, I tell ya. If you imbibe, come by and have a duck fart with me when the baby comes.
Posted by: mrtl at January 19, 2006 10:54 PMOne more of Susie's crazies here. I have been a receipient of the good vibes. They work and you are not alone.
I missed the whole dress up thingy but will take you up on it tomorrow. Keep your head high because it sounds like you are surrounded with love.
Posted by: august95 at January 19, 2006 11:40 PMSusie told me to come here, and what Susie says, I do.
I am in awe of your amazing courage; I don't know if I would face what you're facing with half the optimism you have. Good for you; optimists are better people!
I hope things go well for you.
Posted by: suburban misfit at January 21, 2006 09:14 AM