Mohamed asked me yesterday before we left for the KU Cancer Center whether I was nervous about the appointment. The answer, as always, was no. I'm not sure why, but it all just seems like part of the routine, and I never really think much beyond the immediate, practical questions. It helps a lot, I think, that I like and trust Dr. Van, the oncologist, and Jennifer, the physician assistant. When I do read information on the Net (rarely, but a couple of weeks ago when things weren't going so well, I went back to the clinical studies of Votrient and some articles on kidney cancer), my treatment and the side effects are exactly what are described as the most cutting edge available with the most common consequences.
We arrived at the Center a few minutes early, but I was called immediately for drawing the blood. And then there was a half hour wait before the consultation. Luckily, the waiting room was filled with interesting characters. One woman was wearing very tight capri pants and a skimpy bright chartreuse halter top which, in addition to its usual contents, was also rather tenuously holding her cellphone. Another woman, who weighed well over 300 pounds, was a two-fisted drinker with a Big Gulp in one hand and a Snapple in the other. She, too, was wearing capri pants, but she couldn't get them down over her calves. There was a guy with an unlit cigarette dangling from his lips. Across from us was a well-dressed couple, though the man was obviously in competition with the New Jersey "tan mom": he made John Boehner look pallid. We felt somewhat uncharitable in giggling (not the most common reaction while waiting at a cancer center), but it did fill the time.
Before we knew it, my name was called, and it was time for the consultation. All the vitals were good: my blood pressure was fine, and I had actually put on 3#, which made Mohamed, who is always worried about my weight loss, happy. The blood work was also basically normal; the hemoglobin and thyroid counts were slightly low, but nothing that is worrisome or requires medication. Mohamed thought I worried Jennifer at first because when she asked how I was doing, instead of my usual cheery response, I launched into a recitation of the troubling side effects and of my break from chemo and its consequences. (I had e-mailed Dr. Van a few weeks earlier about taking a break. He has said that it might be a good thing, so I had his approval, but at first I decided just to tough it out before changing my mind and taking three days off, so Dr. Van and Jennifer didn't know that I had taken the break.) I recited the statistics that I'd memorized from the GlaxoSmithKline website: 42% of the subjects had to interrupt or suspend treatment because of the side effects and the average length of treatment was 7.4 months. But, of course, those data didn't come as any surprise to Jennifer. I also asked whether, once one medication becomes too difficult to support, patients sometimes switch to another. She said that although that was a possibility, Sutent, the other most current treatment, usually has more severe side effects than Votrient and hasn't been shown to be more effective.
What we decided was to play it by ear: I'm going to continue the Votrient at 600 mg. a day for the moment. I've been feeling better the last ten days--a stronger appetite and less frequent, though no less unpredictable, diarrhea. The fatigue hasn't abated, however. As long as I feel this way, ok. If the side effects become worse again, then we'll cut the dosage to 400 mg. and see whether that ameliorates the effects.
So that's where it stands now. We stopped at McDonalds for a slushie for Mohamed and a McFlurry for me (you can't have too much ice cream when you're trying to keep the weight on). And then, just outside KC, I crashed and slept till we got back to Topeka. That is scary--and one reason why I almost never drive: one moment I think I'm wide awake and completely alert; the next thing I know, I've been awakened from an hour of being slumped over, probably snoring and drooling--no more attractive than the rest of the waiting room crowd.
Btw, here are two great waiting room works: Flannery O'Connor's short story "Revelation" and Elizabeth Bishop's poem "In the Waiting Room."
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