is it me or the meds?

i’ve been doing chemo – infusions of cytoxan – since the beginning of last year, and just had my (hopefully) last one a week ago. over the course of the year, i’ve never been able to predict how the chemo will affect me. sometimes, there’s no after affect at all – i feel fine and energetic. sometimes, and this is more common, there is, sometime within the week after the infusion, a day or two of nausea and extreme fatigue. sometimes just the nausea, sometimes just the fatigue, sometimes i feel it during the infusion. never a real big deal. needless to say, like everything else with multiple sclerosis, it is unpredictable. i always tell people it must be hard being an ms doctor, not being able to offer your patients any kind of road map, or even any specific treatments that you know will work, or even have a predictable result. treating ms seems to be as unpredictable as having it. i must say, though, that i think the chemo did what it was supposed to do – tamp down the advance of ms, which i’m very pleased about.

but this most recent infusion has really thrown me for a loop, a much larger loop than any other. the infusion was on friday, and all i could think of during the treatment (aside from not feeling ill looking at the sandwich staring at me from the plate on my tray) was that i couldn’t wait to lie down and close my eyes. over the course of the weekend, i think i was asleep more than i was awake. we had guests for the weekend, people i truly wanted to hang out with, but i was useless, begging off what sounded like a really fun bowling afternoon, missing dinners, going to bed early, and just feeling, to use a phrase my daughter coined, oogly.

here it is, wednesday, and while i am feeling better – the nausea is mostly gone – i am feeling weak, and still feel like i could sleep all day and all night. i managed to stay up until 11 last night (!!!), but it wasn’t easy. just typing this has been a struggle – my hands are weak and doing mostly what they want, not what i want them too (i’m spending more time correcting typos than actually typing.) i used to tell people that, at it’s worst, it felt like i had cement blocks strapped to my feet when i walked. this week it’s been two cement blocks on each foot. thank god (and my insurance) for my power wheelchair.

my mood has been a big struggle, as well. i think of myself as a pretty cheerful guy. (though my wife might beg to differ.) i deal, as probably most people with chronic illness, with bouts of depression or just simple rotten moods, times when it is really best for me to just hole up alone someplace, lick my emotional wounds until they pass. and they always seem to, or at least enough so that i can rejoin the rest of the world with a smile on my face, genuinely happy to see them. but this time, the dark cloud has been far more difficult to dispel. the window at my desk looks out over a large area of forest, with mt. washington on the horizon. last night i watched what might have been the most beautiful sunset i’ve ever seen. were it still yesterday evening, i’d still be here staring at it. i was just completely lost in it. i’m glad that i was able to appreciate it, but i’m not sure i was really seeing it.

i’m not sure where i’m going with this, except to say that i am very glad that was the last infusion. i’m seeing my neuro tomorrow, and i hope that whatever the next step turns out to be (oral cellcept?) the immediate side effects are not as unpleasant as these last few days have been. stay tuned.


Author: Stephen

Stephen Harris is a writer, painter and a photographer who lives with his family in Maine.

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