Friday, December 26, 2008
Blast #5 and a Growing Hope
Well, something I had hoped I would never need to say: Blast #5 of induction today. But, I'm feeling great, and in good spirits. It feels darn good to get back on the horse and kill some more lymphoblasts.
All right, here's the update. While it was hard to hear that there were still 1 percent leukemia cells in my marrow and that under a best case scenario I'll be continuing through the protocol as a "Slow Early Responder," it may not be as bad I had initially suspected.
On Tuesday, the day I got the bad news, I saw a pediatric oncologist who made it clear that while having a high minimal residual disease (MRD) is an "adverse prognostic factor" that the cure rate for patients on protocol didn't vary tremendously between MRD positive patients and MRD negative patients because MRD positive patients receive more treatment (there's about a 15 percent difference according to him.)
Today I saw an oncologist who specializes in adult A.L.L. and found this appointment even more encouraging. She was unable to help me out much with my prognosis because they rarely test for MRD in adults. Were I on an adult protocol, they'd probably just tell me I were in remission, I'd be happy and we'd move on to the next step. Treating leukemia is one of the few places where I cannot embrace Thomas Gray's "Where ignorance is bliss, 'tis folly to be wise" philosophy. I'm glad we know, and I'm glad we're doing something about it.
From the fact that they often don't test adults for MRD, I've concluded two things. One: Doctors care and do everything they can to take care of and cure kids (as they darn well should.) Two: A childhood protocol is the right place for me to be.
Point number two was reaffirmed when the Adult oncologist explained to me that she just finished a paper that shows definitively that in patients between 15 and 30 with adult A.L.L. the patients who tolerate the most intense chemotherapy have a higher cure rate than those who do not (childhood protocols are much more intense than adult because they don't put up with whining in kids)
There is no question one would rather not be MRD positive, as this increases the risk of relapse. But, this new information coupled with the facts that I'm right on the line; will most likely go through one of the most intense chemo regimens around; and will now likely do cranial radiation, is in many ways reassuring (slow early responder route is around 3 months more chemo plus cranial radiation and I was randomized onto a "high dose" experimental wing of the trial I'm on -- as I wanted to be). I never thought I'd hope for 9 months of intense chemotherapy, but I now do as in many ways its probably the best chance at a cure.
I have yet to talk to my oncologist about what all this means (he's on vacation) and will be curious to see what he has to say as well.
But for now, all I know is its two more weeks of induction, then another bone marrow biopsy to see if i've made it under the 1 percent line to stay on protocol. I'm quickly learning to take this one stage at a time.
I'm back on the prednisone, so check back often for new blog posts. They'll probably be coming often, and I think some of them should be fun.
Medically/Sexually squeamish beware as the next paragraph may be too much information...
Coming off the predisone I've felt tenderness all over my body. This is especially true in my saliva glands and in my testicular region. While on a scale to one to ten this is perhaps only a two in terms of pain I'd put the disconcerting factor at a nine (all men know what I'm talking about). This is especially true because the testicles are one of the few places Leukemia can metastasize (spread). So, after talking with the doctor, she's not that concerned but to be safe and monitor it, Monday afternoon will find me at a GHC clinic for a "testicular ultrasound." Never in my life did I imagine that someone would grease the old boys up and take a look at them with an ultrasound machine -- Life sure is interesting. I apologize if this is too much information -- I've promised to be open and I warned you. Feel free to joke about this on comments, it seems ripe for it.
Finally, I learned something interesting today. The chemo drugs I'm on now only stay in my system for a couple of hours to mess up the DNA of cancer cells. With this in mind, I did my best and feel like I succeeded in having nearly entirely positive thoughts during this short window of time today.
I'm convinced that while not the end all be all, that the mind and body are intimately tied and being positive increases your chances of getting through something like this -- It's strange to watch myself get progressively stranger in this, but it's all part of the journey. If you had told me a month ago that I would meditate while getting chemo I would have laughed out loud. Now I not only do it, I tell y'all about it.
Anyway, I digress. Knowing the chemo drugs only stay in my system for a couple of hours, I'll countdown to my next chemo appointment on this blog starting two or three days beforehand, so you can all mark your calenders and take a minute to send me good vibes. I'll take all the help I can get.
Feeling great and enjoying life,
Sam
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7 comments:
Sam! have you ever tried telemark skiing?? i'm just learning to out here in Montana and think you'd absolutely love it! when this whole greasy ball ordeal is over maybe i can teach you! good luck on your next blasts!
Greasing the boys eh? Welcome to Tuesday nights. I recommend Crisco. Also, rest assured that I will tirelessly think positively about your balls.
Sam- though this sucks for a season, know that you're never alone and that we will beat this into a life-changing event for the better. Blog strong, my man!
Sam, would it be okay to think positively about you in a general sort of way, inclusive of but not specifying any particular body parts?
Have been faithfully following and enjoying your writing, and am constantly amazed at your spirit and courage. I think leukemia is no match for you!
kn
Hmm... Greasy testicles. Sounds fun. Yeah, well it's all part of it. Anyway, I am confident that you will beat this SOB. Stay strong, my friend.
Scott F.
Scott! I don't think I've seen you in years, buddy.
Thanks for commenting and following my journey!
I hope your doing well and that all is well in Rhinelander. I see you're on the WXPR volunteer list -- pretty cool, I work in the media as well.)
Send me an email and let me know what you're up to these days if you want.
-Sam
bikeryder@gmail.com
Hey Sam~ Happy New Year! I had a dream, last night, that you came to visit us in Taiwan and you were completely cured! It was a nice dream and I thought I'd share.
Also, I have evidence of Erik participating in an Aboriginal Dance at a pub we went to last night to celebrate the new year. Heeheehee.
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