Lose the Label
A Student Activist Community

posted by jakethorn on July 6, 2008 - 7:58pm

Tags:

• personal

I’ve had about four days of calm. More than that, improvement. As of yesterday, I have an immune system again, albeit a vulnerable one (my doctors made an analogy calling it a “baby immune system” since all the cells are completely new and not all that strong). I also have enough platelets in my bloodstream that if I got shanked in a bar fight, I could probably make it to the ER if my friend drove fast enough and didn’t make any wrong turns. I’ve also gained a few pounds, my eyes are looking better and I just feel stronger overall. It’s hard to believe I’m the same guy who vomited all that bile in the trash a few days ago.

I’m probably going home Wednesday. No, really this time. It’s not a tenuous thing… it’s something the doctors are planning on. They just want to see me stay as stable as I am for another day or two and wean me off the pain/nausea medications before they let me go.

I’ve been hospitalized since April 28th (except a day and a half in early May) and now it’s July. When I went in, if I recall correctly, gas was still under $3.50. Now… … yeah… well, I don’t expect to be driving for awhile, anyway. That “baby immune system” of mine isn’t quite ready for many public places yet, and my colitis is still completely out of control. Since I’m only going to be home for a maximum of 10-15 days, tops, there’s just not opportunity for much travel. But that’s ok. I have plenty to do at home and hope to have a lot of visitors.

The plan is to put me right back here in the hospital around the 21st for my next round of chemo and week of aftermath. Then if my immune system and platelets recover again, go home again. Repeat that cycle a few more times. Hopefully by then, the lymphoma will be in remission and I’ll have a bone marrow transplant donor lined up (maybe a little brother, maybe a stranger) and can start that stage of treatment, which I hear can be as hard as the chemo. So I’m pretty invested for at least the next few months. Then beyond that, I’ve decided I need to get my colon removed because this ulcerative colitis stuff has gotten too difficult to bear. I’ve tolerated it for four+ years (and well enough that those of you who knew me in college saw the illusion of a normal, healthy person) but I can’t live like this anymore. So piece all those short term medical hurdles together and that makes a full obstacle course. I don’t see how I’m not out of action until at least Christmas, possibly beyond. I’m not going to be an activist in the ’08 election. I’ll be lucky to find time to even write about it.

My parents and the doctors and the nurses and social workers all tell me not to think so far ahead, but I do anyway. They’re probably right, that all it can do is make me worry, but … I do anyway. I think of all the things that can go wrong. Maybe there won’t be a donor. Maybe I’ll get a bad infection. Maybe the colitis will drain me too much. I think of all the other plans I’ve ever had and how they’ve all gone wrong somehow. Not that they’re regrets, just that they haven’t worked. They’ve looked so good on paper and failed so bad in practice. This is probably why nobody wants me thinking more than a day ahead.

This time at home should help clear my mind. I’ve lived too much the last two months. I’ve had to dig very deep and reach out for help, something I’m not used to doing. All my life I’ve usually been the type to suffer as an individual rather than ask the group for support. I’m glad this time around I didn’t have the choice; people were there for me whether I asked or not, and that’s one of the deepest memories I’ll have looking back on when this is all set and done. My faith in my fellow human being has been restored, something I’d been having a lot of trouble with the last year or so. I mean, it’s not like I’ll be walking up to strangers expecting a smile and a hug, but I’m free of the assumption that nobody cares about anybody else and that goes a long way toward making me feel better about where we’re all going.

I’m going home on Wednesday. That makes me feel much better.