Monday, February 11, 2008

Letters from a Hospital Bed

My previous attempt at sending an update didn't work, so here's the last ten days in review:

I got settled in here on Thursday evening (the 31st), and it's been a pretty interesting time. One of the first things that happened was that I was given a Neupogen shot—the first of many daily injections—to help keep the neutropenia from being as extreme as last time. I was also hooked up to the IV pump so they could start hydrating me.

Late Friday morning I was started on anti-nausea medication, and my five-day chemo regimen started that afternoon. (For those keeping score, I'm taking three types of chemo: cytarabine, idarubisine, and fludarabine.)

Things got interesting almost immediately. The last time I was given Neupogen, I was warned that I would likely experience joint pain. I didn't back then, but on Friday it came on suddenly, strong, and fortunately localized. Even with the anti-nausea meds my stomach started to churn from the chemo (except for one 10-minute span, never so badly that I thought I'd throw up). I was feverish. I started to experience night sweats again, and I found myself having to run to the bathroom pretty often.

You'll notice that, like last time, almost none of these were side effects from the chemo. Even the fever was determined to be a Neupogen side effect. Also like last time, we were able to solve most of the problems by making a few adjustments here and there. Dressing in cooler clothing (i.e., a gown) and covering myself in fewer blankets helped alleviate the fever and kept the night sweats to a minimum; codeine taken at the right time kept the joint pain from being more than a nuisance; and the bathroom problem was solved by cutting my hydration rate by a third. The result is that 48 hours after I was getting slammed by all of the ill effects at once, I was feeling pretty good. Kudos again to the great staff here for actually listening to my concerns and issues and then doing something about it.

Also on Friday, I was informed that I'd be moved from my private room to a semi-private room. It was a matter of resources; a new patient needed to temporarily go into isolation, and I was the only one in a private room who didn't need to be isolated at that moment (though I would be when my counts started to fall again after the chemo).

So we moved all my stuff over to a room that was no bigger than my original room, but partitioned for two beds. Not only that, but it was right across from the front desk, which is where the nurses' and on-call doctors' station is, so there was a constant bustle. As usual, this didn't particularly affect my ability to sleep. But I did appreciate just how busy the staff are, 24/7.

What really made things interesting were my roommates. The first person who was wheeled in shortly after I was was a francophone man in his early 90s. He was having a rough time; half the time he wasn't aware of where he was, and the other half he was saying that the doctor said he'd be moved to the eighth floor, so why was he on the seventh? Either way he was convinced that he'd been kidnapped, and he kept shouting for help (he was hard of hearing, so everything was at high volume), threatening to kill himself, demanding to talk to his family, or demanding to see the ringleader of his abductors. Worse still, he was extremely thirsty, but because of the particulars of his condition he couldn't be given anything to drink. I'm sure he thought he was being tortured.

Vicky was staying over that night, but had to wear earplugs. I, of course, just turned over and went straight to sleep. At one point during the night I got up to go to the bathroom, and he asked me why I was there and if I knew where I was. I tried to reassure him that we were in a hospital and we were being taken care of, but between my sleepy French and his disorientation, it was a lost cause.

The next morning they moved him to a different room and I got a new roommate: Sam, an 88-year-old Jewish WWII veteran of the Royal Canadian Air Force and later the Royal Air Force. We got along well, talking about the relative discrimination of black and Jewish servicemen in the Canadian, British and American armed forces, the Tuskegee Airmen, the differences between B-17 and Halifax bombers, training, life during wartime, and our respective ailments. Sam was pretty much immobile, so when his wife wasn't around we'd try to help him out with things like turning out his light, calling nurses, or just making sure he could reach his phone.

On Sunday I was moved back to my private room. It's nice to have all this space to myself again, but I kind of missed having Sam around. If we'd been in a regular (more spacious) semi-private room, I think he would've made a great roommate. He sometimes suffered from dementia and short-term memory loss (we had to keep reminding him Vicky was my wife), but he's a warm and funny guy. Besides, I've discovered that when you're in hospital, it's kind of nice to be able to take care of someone else, even if it's just in small ways. Unfortunately, with the fatigue and neutropenia that hit shortly after, visits were impossible. (During a walk today, I ran into his wife. Things aren't looking too good for him, sadly.)

Things have been up and down since then. On Tuesday morning I was wiped out for a few hours (one of the docs: "You feel like someone on their fourth day of chemo." Me: "Oh, yeah.") but I later felt good enough for a short walk. I've slept entire days away and been extra-perky on others (though only for a limited time—though today, Saturday, I've kept it up for six hours).

Funny thing—my hair is starting to grow back from the last round of chemo, just in time for it to start falling out from this one. Also, unlike last time, my taste buds are pretty much normal, except for two weird exceptions: applesauce doesn't taste right anymore (though some cinnamon fixes it) and tonight I ate an entire orange Del Monte popsicle and didn't taste any of it at all, even when I broke off a piece and chewed it.

I guess that's it for now. It's back to playing with the buttons on my bed and charming nurses for me—just not at the same time.

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