Days 31 and 32, Thursday and Friday, February 28th and March 1st, 2013


First, my apologies for not writing a post yesterday; I usually write these in the morning, then edit and post in the late afternoon. Occasionally, I write and post all at once, because the morning was filled with medical necessities. On Friday, I had a full morning getting my Hickman line installed, which involved conscious sedation and take-home oxycontin. The combination of surgery and drugs proved enough to put me off my game, literarily speaking.

Thursday was a pretty chilled out day. We'd touristed enough for Dad's liking, and spent most of the day at home, reading and relaxing, waiting for four-thirty pm to come knocking. This was the scheduled time for my Data Review Conference: the serious discussion of my upcoming treatment and the signing of release forms authorizing said treatment. I did not particularly enjoy the conversation. After weeks of waiting, a lot of my cheer had worn off - cheer in the face of constant conversations about how you need this treatment to live takes a fair amount of emotional and mental effort, and the longer the delay, the harder it gets to keep beaming sunshine out of my bottom. Bottom sunshine runs on pure will, sort of like Green Lantern, but without the weakness to yellow. Yes. Green Lantern's weakness is yellow things. You want to stop him? Paint a bullet yellow. Second worst hero ever, right after Batman.

http://www.smbc-comics.com/comics/20130217.gif

Batman's super power is not getting brain damage from thrice-weekly concussions.

I tangent more when I write while I am full of oxycontin. Holy poops.

The autologous transplant plan was very straightforward. The allogeneic plan, less so. As I think I mentioned earlier, there is almost no data for my specific situation. A transformed, non-Hodgkin's T-cell lymphoma without a 10/10 HLA donor? Two cases. Let that sink in: Two cases. Not two studies. Two other patients with similar situations that they have data from. Blaaaaah. I'm not surprised. Historically speaking, I never do anything the easy way.

What that reduces to is this: I was offered two avenues of transplant, with roughly equivalent risk/benefit profiles (described by my doctor as "a coin toss."), the first being the previously discussed 9/10 HLA unrelated donor, the second being my parents, who are, by default, related haploid (half) HLA matches. The 9/10 has slightly higher risk of GVHD, but slightly lower risk of relapse, while a related haploid match is the reverse. I have elected to use one of my parents' stem cells.

Rough meeting for me.

I should be clear, both transplants still have good odds for success and a long-term future free of GVHD (Note: long term. Everybody gets some in the short term, and it could be five years before that goes away.). I was just hoping for something a little clearer.

Friday was busy. I had my blood drawn, an IV put in, received my neupogen infusion (four times the dose I'd been on during chemo), got prepped for surgery, had surgery, a snack, and then a very slow walk home. I watched a lot of cartoons, ate a pizza, and went back for a second neupogen infusion. Mom and Dad had their blood drawn for proper matching and testing, stayed with me during surgery prep, and then Dad had to leave before I came out to the recovery room, because he had a flight to catch.

Hell of a couple of days. I apologize if this is incoherent and rambly, I'll clarify things later when I have fewer drugs in me.

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