It’s time to post an update on my health situation. It’s been over three months since Renée and I got back from our honeymoon, and the arrival home had resulted in an immediate transfer to the hospital to take care of pneumonia. So, what’s changed?
Well, the GVHD managed to get worse since then. The attack on the skin has managed to spread. The places not affected are my palms, the soles of my feet, my genitals, and my head. I would like to to not spread any further or into any other organs. The evidence of GVHD is also pretty prominent in my mouth. I cannot eat real Mexican food now, and I can only manage maybe a quarter of the menu at Taco Bell.
Going to visit my oncologist was an interesting experience as he hadn’t expected me to have the GVHD expand as quickly as it did. Moreover, the overall body pain was not something he’d really seen before. So, once again, I’m an oddball case. Yeah!
I’ve been going to dermatology for PUVA treatments. Basically they put me in a box with UV lights, administering UV-A radiation. I feel like a rotisserie chicken in there, but it is having some effect, at least as far as making my skin grow faster. This is an intended effect, as the GVHD affected skin is scaly, dry, and thick.
The bad news is that on top of the overall skin pain, peeling has started to occur, which is also painful. I’ve managed to get a rather large sore on my back now from where the old skin peeled and the new skin is pretty raw. It hurts constantly.
Given that I’m going to school full-time, I cannot be on OxyContin or Dilaudid all the time. OxyContin was particularly bad, as it gives me headaches long after the analgesic effect has worn off. So, now I get to be on methadone. Whee!!! It has a much longer half-life than the others, so in getting started there has been a worry about toxic buildup. So, we’re constantly looking for side effects. It takes away a fair amount of pain.
Meanwhile, I’ve been moved to sleeping in a recliner. It’s far easier to get water to drink and take pills without a lot of movement. When the analgesic effects have worn down, movement is a quick source of pain (with stretching and contracting of the skin). That has brought other issues as to how many hours of sleep I get, which has made diagnosing side effect of the methadone tough.
To top off the fun and games, I manage to contract some kind of cold, too. So I get to cough and blow my nose and feel nauseous. Yeah!
Did I mention I have a paper to write?
Fortunately, I have fabulous professors who understand that it is hard to write when you can’t think clearly due to pain and nausea. I’m trying to get the paper done, bit by bit, but it has been tough. I may end up dictating large portions. But one of my professors who has been have a rough time as of late said he felt humbled by my situation and he doesn’t feel like he has many problems at all, in comparison. Well, that’s good. I wonder sometimes if that’s the point of my life, to make people feel better about theirs. Oh well.
Anyway, I hope to have that paper in on the stuff that is blatantly obvious to me, like I’ve some kind of idiot savant. I get asymmetrical warfare and diplomacy and ethics all too well. But then again, I didn’t internalise Clausewitz. Going back to Sun-Tzu makes a lot more sense.
Hope everyone else is doing well.