Friday, March 21, 2008

Good Friday Update

[For the more sensitive souls in the audience, all curse words in this message have been replaced with their Battlestar Galactica equivalents.]

So early this morning I had a little freakout. it was around 4:00 or 5:00 a.m., and I was catching some Zs between my frequent dashes to the bathroom (6 liters of fluid over 24 hours, remember?). Suddenly I wake up and there's a man standing at the foot of my bed. He's not a hospital staffer. He's an aboriginal dude, wearing a winter jacket over a hospital gown over pajamas. He's not looking at me. He's staring out the window, and he's clearly saying this word that I don't understand. In my head I'm screaming, "What the frak! What the frak!? What the frak?!?" but what happens instead is I turn on my radio voice and boom, "Wrong room!" The guy looks at me, turns around, and shuffles out the door.

Now, this is remarkable. Because I'm a sound sleeper and I've been paranoid about laptop theft (I didn't get the locks I needed until today), I'd rigged a little nighttime alarm in my room. This particular bathroom door just won't stay ajar; if it's not closed all the way, it happily swings open, becoming an obstacle for the room door. Normally it's a pain, but at night it's great; someone who just walks in will bang the door, startling both them and me. This guy, however, must have shuffled in the way he shuffled out, so he never hit the door and I dozed merrily until I realized someone was in the room.

Of course, I couldn't sleep after he was gone. When the nurse came in to do my bloods (which is usually around 6:00), I explained to her why I was already awake and alert. She said, "I've been chasing that guy all night!" Apparently at 11:00, after his family left, he put on his clothes and tried to leave. Since he's a bit disoriented, he's just been trying every door he finds, hoping to find an exit. She finds him, puts him back in his room and explains that he has to stay, and then it starts again.

(I've seen this happen before, coincidentally with another, younger aboriginal guy, just last month. I was out for my afternoon stroll, and this guy was walking out with his friend when a nurse stopped him and asked where he was going. "I feel fine. I'm going home," he said. "It doesn't work that way," said the nurse. "You're still sick." His friend looked like he'd been punched in the gut; he probably had no idea that they shouldn't be leaving.)

Other, less exciting stuff going on. My chest discomfort (I still can't call it pain—I barely notice it most of the time) is persisting and just marginally worse, so I'm getting four daily doses of milk of magnesia in case it's acid reflux. Yum. My hemoglobin count was low, so I got two blood transfusions today. (I found out that, including those, I've had 25 transfusions of blood or platelets since my first hospital stay. Remember, the marrow is crucial, but donate blood and platelets too!)

I finished my etoposide regimen today, thank goodness. It's had me running to the bathroom nonstop, with sometimes as little as ten minutes between visits. The only other side effect has been a little bit of persistent stomach discomfort, along with some water retention (my feet look like sausages, with five little sausages on the end, but my skin looks great). The cyclophosphamide started this evening, and it's not quite as intense. For one thing, it's not constant: I get it for two hours a day, probably over the next four days (I don't have my copy of the order on hand, so I'm going from memory here). Unlike the etoposide, which was a mere 20.8 mL per liter of saline, the cyclophosphamide is 190 mL per liter of saline. So clearly it's not as bad-ass. (I might regret saying that.) One difference is how fast they pump the stuff into me. The etoposide was coming in at a steady stream of 203 mL/hour for 64 hours; the cyclophosphamide is being delivered at 519 mL/hour for these two-hour bursts. It doesn't feel any different, but... dang. Oh, and every night after the cyclophosphamide is done I get a diuretic. More bathroom visits! My nights will be fun, I tell you.

Bit of a media blitz this week. The Chronicle, a weekly newspaper that comes out in several editions in Montreal, had a front-page story on me (with a great picture of me and Max) on Wednesday, then on Thursday another Montreal weekly, Hour, ran a story using one of Vicky's photos of me with the caption, "Who says chemo can't be sexy?" The website is almost always up on one of the computers in the nurses' station, and it caught the attention of my hematologist, who's (a) really impressed by the amount of work we're doing on it and the people who have helped out, and (b) astonished that I'm doing all this work on dialup.

Huh. My chemo dose just ended, and without thinking I punched the keys to set the IV pumps to clear out the overfill from the bag to save the nurse the trouble. I've really been here too long.



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