August 22, 2008

Disclaimer: A lot of this message was written as painkillers were kicking in. I blame grammatical errors and any lack of clarity on them.

So, went down to the Ottawa Hospital yesterday. Did a bunch of blood tests (including HLA typing) to get my info into their system, and talked about the transplant itself. There was little I didn't know already, just from reading and talking (more on that in a bit). Things are still looking good with the donor, maybe not as much for me (infections and all), but I continue to work on getting into fighting shape. The transplant itself will most likely be the week of September 15 (the week of the Ottawa International Animation Festival—no irony there), and eight days earlier I'll have started my ultra-intense chemo to start the process. There will be more regular contact with the Ottawa folks in the coming weeks, including a sit-down in which we'll go over every aspect of the procedure and my containment, as I like to call it, in fine detail. Jokes were made about the hospital food. I grabbed a cream of chicken soup on the way out and pronounced it quite tasty.

I had meant to mention earlier this week that Jason, one of my AML buddies who found three compatible donors in April, had had his transplant on July 1, and we'd been playing telephone tag since July 29. We finally connected on Sunday, and we had a great time catching up, including a detailed blow-by-blow of when he felt like crap, how he felt like crap, and how long he felt like crap. But he was exuberant as ever, and it was great to finally connect with him. Unfortunately I had to pass on the news that our mutual AML buddy Terry had died.

Anyway, the reason I hadn't mentioned it is that lately I've been focusing on organizing certain things around the bedroom and office to make them easier to keep clean for my return post-transplant. And I've still been just tired enough that I'm napping just about every day. But since Tuesday there was a brand-new reason.

Back in June I reported on how my feet and shins had swollen to epic proportions, and how some diuresis (i.e., peeing it out) would do the job of dispelling the extra water I'd been retaining. Worked fine for my right, but not for my left, testing, not a clot, cellultitis, antibitotics, pain went away, keep feet elevated if not active, etc., etc., etc. Case closed over time.

Not so fast. On Monday morning I woke up and my right leg was almost but not quite as bad as my left; I could still close my sandal clasp easily, but it wasn't quite as roomy. I had a regular hospital checkup that day (not with my regular hematologist, as she's out of town), but the doctor said it was a normal leukemia thing. "Normal" as it "it's one of those things that can happen, though it doesn't happen to everyone."

Tuesday morning was an altogether different matter: the pain I had experienced in my left leg when I got up in the morning was now being experienced in my right—but the pain was far more agonizing and lasting longer. If I kept circulation flowing by moving my leg (or having a good massage) things would improve, but it was still a matter of constant pain management so long as I was awake. Vicky and I bore this out by walking around the block after breakfast on Tuesday. I used her umbrella as a walking stick, but by the time we'd halfway finished our circuit, I didn't need it as much. When we got home I asked my dad to bring over some of his collection of walking sticks so I could find one that would let me get support if I needed it while standing up straight.

The walking stick that worked best for me had actually been a present to my father when we were in Kenya in 1986. It's carved from wood, and quite striking with its design of an elephant supporting the ring I hold with my hand(s), which are in turn supported by two roaring lion's heads. Everyone stops to ask about it when they notice it. However, once we got to the Ottawa Hospital we noticed right away that it's not very good on hospital floors—it just slides too much. Much to our chagrin, my dad had a rubber tip fixed to the bottom before we left. It works better, but it doesn't look right.

On the way home, I called my hospital and told the doctor about the pain. He asked if I'd taken anything for it. I said yes, 30 mg of codeine, which took the edge off but also had me sleeping through most of the car ride to Ottawa. He said, That's not enough. I said, Tell me about it. He told me to up it to 60mg when I got home, then call him the next day to let him know how well it worked, and we'd take it from there.

When I got home I was thoroughly distracted by other things, and remembered a few hours later to take the upped dose with my evening meds. While I was catching up on e-mail a bit later, I noticed my legs were bothering me less. Shortly after, I fell asleep at the keyboard. Twice. It was around 7:30 when I finally finished what I was doing, went upstairs, and went to sleep for about five hours. And that's why I hate painkillers; the really good ones knock you out, so you can't actually move around and do stuff pain-free.

I had to get up in the middle of the night a few times to go to the bathroom as usual, and as usual (since Tuesday) the shift from supine to standing was not an enjoyable one. However, I did it myself, dealing with the pain mostly through breathing and muttering sarcastic comments under my breath. This morning, though, it was pure and utter agony. Vicky had gone to drop off Max to start his day of mad fun, and I discovered it was 33 steps from the bed to the toilet. I discovered this because I had to fight for each step, arguing and cursing the entire way. It's still true that if I keep walking things improve, but the very first hour or so of the day is the worst—and this time I was starting to black out just from having to deal with so much at the outset.

I eventually made my way back to bed, and while the pain didn't stop outright, lying down helped; I didn't need to close my eyes. When Vicky got home and I explained everything she had the brilliant idea of using this wooden massager on my legs, even on the tender spots. It hurt a little at times, but it was so worth it overall.

Called the hospital, and the doctor gave me a choice: he could prescribe a stronger painkiller, or I could come in in the next two hours—a bit of a challenge with traffic, finishing breakfast, and just moving slower.

Well, I did get there just in time, and he looked very closely at both legs while listening very closely to my history and checking out my file, including my most recent blood test results. His feeling was that, yes, this was the leukemia, and it was getting out of control. He prescribed two painkillers that I would get immediately as a subcutaneous injection and intravenously, with the rest of the doses to be taken at home orally. His third prescription was for yet another relatively mild form of chemotherapy; something that could be administered quickly—two large syringes of a blue, clear fluid that went straight into my catheter in about five minutes, from the nurse gloving up to disposing of the syringes—with minimal side effects, and the option of stopping treatment if I don't need anymore come Monday. That should hopefully attack the source, and like the Hydrea keep things under control until transplant time rolls around.

The painkillers, of course, made me a bit loopy. This time it was dizziness and drowsiness, though not excessive amounts of either. When I had my second dose later (via a tablet), I slept pretty well (I got home by the time I needed to), but the doorbell woke me up and my mind was a badly confused, slightly scared jumble for a while before things calmed down. However, even before the second dose we were easily able to determine that the painkillers—one a daily dose of a steroid, the other just to take as needed—did a good enough job of diminishing the pain. The shins and feet still hurt, but not enough to take so much out of me physically and mentally. That's good enough for me.


posted by Emru Townsend at


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