Taking it on the road

Things are relatively stable here in Lenvimaville. After being “grounded” in Montreal from February through May, I finally got back on the road at the end of the month. First, I flew to Aarhus for a seminar at the Center for Sound Studies (BECAUSE OF COURSE THEY HAVE A CENTER FOR SOUND STUDIES) and then a conference on Music and Artificial Intelligence at the Aarhus Institute for Advanced Study. Then I came to Berlin, where I participated in a workshop on the history of compression, and then another one on African Phonography (hot tip to American scholars who reside in the United States: apply for a 4-month fellowship in spring, summer or fall at the American Academy of Berlin).

Under the best of circumstances this is an exhausting itinerary: fly across the Atlantic, then spend a week doing all day events, then get on a train, then do it again for 10 days, which a couple breaks. I am happy to report that whatever tiredness I have felt does not seem different from how I would feel if I weren’t on Lenvima. One of the big concerns with the drug is endurance and fatigue, and I seem to be passing this endurance test, though it’s all true that my overall stress level is very low because I’m on leave. In any event, I gave myself the option to bail on any event at any time, and have been good about doing what I feel like.

I’m holding steady at 18mg. I notice my hands a lot but am not in ambient pain without Gabapentin–there is just tingling from time to time, plus the ongoing hypersensitivity. And I’m remembering more nouns now. My blood pressure is slowly dropping back towards normal, if not quite there. I’ve got some stiffness in my joints that I’m going to need to do something about–it could be caused by Lenvima and it could be caused by the blood pressure meds. Ibuprofen helps but I can’t be on that forever. My nausea seems to be down to once a day or even a little less, though my digestion is still slllllooooowwwww compared to what it used to be.

There is slightly nasty stuff in this paragraph: Flying was hard on my hands. After a transatlantic flight and then a shorter flight in Europe, it felt like there were chemical burns on the sides of my fingers despite frequent and liberal application of Eucerin. It must be the dryness. Anyway, that went away in a few days. My hands are still sensitive–I find opening a sealed bottle of fizzy water somewhat painful–but that seems to be the new normal. But then…I started getting the foot part of hand and foot syndrome. As best I can understand, you get something like blisters under the skin. This makes every step painful, sort of a combination of walking on a giant blister and walking on a giant patch of raw skin. One intrepid member of my social media support group suggested that I try blister bandages. The German ones are surprisingly good, and today was my first real pain-free walking day since the 27th of May. Maybe they’ll come back, maybe they won’t, but I am stocking up on the German bandages just in case (the Quebec ones are a bit…flimsier).

One of the weirdest things about this trip was hauling around a two-month supply of Lenvima, which is more valuable than my computer, not that anyone looking to steal stuff would know that. Still it’s strange to be hauling around some kind of weird booty in my carryon, worth an inordinate amount of money.