Saturday, July 28, 2012

32. Blargh

Yeah. Like that.
So I write this at the end of the first week of chemo/radiation. I was really nervous about radiation, they'd scared me effectively by telling me it'd be like having a sunburn, that my skin might get irritated, that the let's call them "bathroom problems" might get worse... but none of that has happened.

In fact, at first I was pretty happy. I didn't feel the radiation at all, it was simple, all I had to do was lay still for about twenty minutes. And that's been my experience all week. I don't feel the radiation, getting the treatment is the easiest part of the whole thing.

It turns out that the chemo pills aren't covered by our insurance. So I could choose to pay close to $400 a week (if we qualified for financial assistance... if we didn't, it was $1800) for pills or nothing for a pump. So despite hating being hooked up to the pump, I went that way. So I've got four and a half weeks coming of wearing a pump five days a week.

Here are the problems with the pump: It's clunky and makes it hard to sleep, and it makes it really hard to shower, because you've got to cover the port with plastic wrap, then hang the actual pump outside on a hanger, then take a quick shower where you try to avoid getting the port area too wet. It turns one of my most enjoyable things, a hot shower, into an ordeal for most of the week.

However, even that was a minor inconvenience, relatively speaking. I mean, from what I hear, the pills are giant, you take them twice a day, they can have worse side effects, I might have chosen the pump eventually anyway. Would have been nice if it had been a choice, but that's not the healthcare system we have.

But no, the problem is the side effects. Which are immense, immense drowsiness. Not just of the "must go sleepytime now" variety that I had with chemo, but just a general weariness. And a little nausea, which the pills have taken care of, but which is still a touch annoying. And a general "bleh" feeling that I can't pin down. Sometimes, even when I'm not in pain (due to a lucky hour or two or to the relatively effective pain medicine I'm getting), not having to run to the bathroom constantly and not nauseous, I still just... don't feel good.

The worst part is, I never know when these feelings are going to hit. I'll have hours where I'm fine, but I don't know when those are going to be, which makes it really hard to schedule work and social stuff around it. So my life for the next month and a half is go to radiation/chemo, do work when I can, come home and sleep. I'm going to be a bit more of a hermit than I like to be. And poor Suzanne is really having to do all the work with the kids. Most of the time when it's bedtime, I can't read because I'm crashed out on the couch in my office.

That said, there is good news. The doctor explained that radiation always shrinks, and in 10-15% of the cases, it shrinks the tumor entirely. After our experience with chemo, I'm not even allowing myself to dream of that outcome, but I am hopeful that all this annoyance and suffering will be worth it. And the side effects I'd been expecting haven't surfaced yet, so really it's just feeling useless (and being useless) more than actually being in more pain, which is good.

Anyway, that's the latest cancer update. Believe me, I wish it was happier as much as you do.

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