As I get deeper into chemo, this is my 10th treatment (and many of the toxins stay and accumulate in my body), I find my short term memory to be at best 90%, but the strange part is that I remember most of the mundane and then don't remember the unusual - such as a special visitor or a medical procedure. I think my brain is playing tricks on me in addition to the chemo. This memory loss is clearly a chemo side-effect.
But today I attempt to define a new, third side effect, called (and primarily used as a scape goat by me) "lack of follow-up", which in my opinion is due solely to the fact, in some cases, that I don't at all remember the underlying act(s). Believe me, I would prefer to write a thank you note, for example; or to remember that a lumbar biopsy was already completed and that it explains the hole in my back.
Excuses (and memory loss) are not acceptable, so here's what I propose. If you and I interact and I forget something, or you remotely think that I forgot something (assume I am a thoughtful and considerate person), then it is your duty to let me know. Deal?
This should get me back to par for the time being. Thank you.
-------------
David Holder
(202) 270-3174
Friday, February 22, 2008
Memory Loss and Favor
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8 comments:
Dave,
Just a reminder... You don't have to pay me back the $250,000 that I loaned you until you come back from New York.
- Marullus
David,
Thank YOU for letting us be a part of your journey. You feeling whole again will be all the thanks we will ever need...you can't write that in a note! We love you so much, just hang in there.
Jenny G. and The White Boys
David...
All you really have to remember is...GET BETTER!!!
Haha! Marullus and I clearly share the same sense of black humor. My first thought was that I lent you a million bucks and you promised to pay me back. LOL
No worries, Dave. We've got your (punctured) back. :-)
Leeann
Dave,
That's a deal. Each day is a new adventure isn't it. Hope you stay warm and dry in all that NY snow. Sending you our love.
Jenny, Kil, Miles & Cole
Dave, Some ideas for the happy hospital stay:
1- post a list of your favorite movies so people (who are always looking for things to do to help) can buy or send from personal collections.
2- I check SloanK's website and they do have normal cable. Could you believe no ESPN @ Hopkins. What's a sports junkie patient supposed to do?!?!
3- If you have a laptop... I couldn't tell if they have wireless hotspot, so maybe you want a cellular broadband card. I'd gladly buy you one if you like and you just would need to add it to your cell plan.
4. If you're really feeling gadget-y, get a SLingBox. You connect it to your cable box and your home computer network. It "place shifts" your cable output so you can watch your home tv, movie channels DVR, etc anywhere you have a broadband connection. It works great and no subscription fees.
5- Have some go to a Manhattan Staples and buy a $200 office desk chair. THe ole hospital chairs aren't so ergonomic and sitting in bed gets (as you know!) quite old.
I used to think a lot about crafting the perfect hospital experience if I had to go back (not that I worried about relapse or anything!) so I'm vicariously thinking about your happy stay.
I'm sure thinking a lot about you my friend and I'm glad you're getting this done so you can get about living a long happy life.
Let me know if you need anything.
Your friend Brian D.
Dave,I hope you don't mind...I thought I'd post on your site a couple of e-mails I got from a young woman named Traci because it's a really happy ending. She's a fellow Burkitt's Lymphoma survivor who shares a mutual friend that set us up. First, is an introductory email I got from her about a year or so ago. We've stayed in touch frequently and recently, we were chatting about scans and she gave me some really cool news (see below for both emails in chronlogical order). There's a whole world of survivors like us with great outcomes that show that this thing is beatable and life does return to normal (or often, better).
1- Her story from an introductory email awhile back.
Brian-
I was diagnosed in April 2006. I found a lump in my armpit, and my life turned upside down immediately. After getting it biopsied, my surgeon told me what I had and set up an appointment for me at Johns Hopkins. He basically said that since it was such a rare cancer, Hopkins was the best place around to get treated. I went in for my appointment with the oncologist and was shocked when he wouldn't even let me go home. They checked me into the hospital right then and there. Literally, all I had was the clothes I was wearing. I had just had a baby (she was 11 weeks old at the time), and she and my husband were with me at the appointment. I was a wreck! Samantha had been strictly breastfed up to that moment. When they had to go home, it was like one of those scenes in a movie where you see the doctors (although in my case it was my husband) taking the baby from the hysterical mother. Anyway, they started my chemo the next day. At least it didn't leave me much time to imagine all the horrible side effects I was going to have :) I had four rounds of chemo--MacGrath protocol A and MacGrath protocol B two times each. After I finished my chemo, my doctor kind of admitted that he didn't think I'd be able to take that much chemo because I am so old (I was 29) relative to the typical Burkitts patient (kids). The chemo stunk, obviously, but it wasn't as bad as I dreamed it could be. The worst parts for me, aside from being in the hospital for so long and away from my husband and daughter, were the spinal taps (they did tests on the spinal fluid for the presence of cancer cells and put in methotrexate--my least favorite drug in the world). I had to have 6. I was actually supposed to have 8, but I responded so badly to two of them that they cancelled the last two. After the second 'bad' one, I wasn't able to sit or stand up without vomiting for almost 2 weeks. After that, whenever I wasn't completely flat, I'd immediately get these intense headaches that would make me cry. That stunk!
The good news is that I am one year cancer-free (as of last Thursday)!!! I feel like my old self again (except my hair is reminiscent of Shirley Temple, perhaps even curlier). My immune system is still in recovery, and from what I am told, that will take a while. I've gotten a couple of colds that my husband and daughter had that have put me completely out of commission for a few days. Having Burkitts was bad when I was sick because of the intensive chemo, but the good news now that the treatments are in the past is that there is a low recurrence rate.
My friend, Tracey, just told me that her mom had briefly met someone and learned he had Burkitts. I imagine that since you were out in public to meet Nancy, you must be at least through the treatments. I hope you have had a successful treatment and recovery.
Sincerely,
Traci
Traci's recent e-mail to me:
Brian-
Congratulations on your clean scans! I'm 18 months out and sometimes still can't believe what happened to me. I always get nervous when I go for scans, even though I really don't believe it will come back. I went in December for my last checkup, but couldn't have a scan because I am pregnant! We are so excited, and the doctors were pretty surprised. When I finished my treatment and talked to Dr. Flinn about pregnancy, he basically recommended that we adopt because he didn't think my ovaries would have come through treatment unscathed. I am just about 6 months along and we are having a little boy this time. I know it is corny, but I kind of think of him as our little miracle!
It was nice hearing from you. I hope all continues to go well.
Traci
_____
Brian and Wendy Doak
5814 Meadowood Road
Baltimore, Md. 21212
bcdoak1@aim.com
Wow! Thanks to you, Dave, for always providing inspiration but also thanks to Brian and Traci - this entire blog is just a wonderful example of the generosity of the human spirit and proof that you can beat this thing!
Now, about the time you promised me you'd refi Underwood for us at 1 percent ... LOL.
Just make me one deal - get better soon!
Thinking of you ...
XO
CMF
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