Super Bon!

Everything’s going smoothly. I saw my oncologist last Thursday but was pushing some Monday deadlines, so I’m lateblogging this. My tumour marker is at 8, which is not a statistically significant difference from the 7 I registered six weeks ago before I left. I’m staying on 18mg Lenvima for the foreseeable future.

I have no new symptoms to report, but, just to be clear: fuck foot blisters. Also socks in summer. I have actually fallen to the level of wearing socks with sandals. I am normally morally opposed to such things but exceptions are going to have to be made.

I am thrilled to be home. Carrie is too. The cats have been getting a lot of petting for the last 46 hours or so.

It was nice not to have a doctor’s office visit for six weeks–I barely remembered what that was like. I will see my onco this Thursday so I’m back on that clock now. I also will have my first CT scan on Lenvima in August and I am for once eagerly anticipating the results.

I can’t say I was able to operate in full denial mode while in Europe (my preferred way of dealing with the “watch and wait” before this current phase where I had zero control and there was nothing to do), as one or another side effect of Lenvima or its companion drugs rose to the level of my attention each day.  But happily, fatigue does not seem to be one of them: Berlin was absurdly busy, with sometimes up to four different events or meetups in a single day.  I tired out eventually but it didn’t seem any worse than usual.  And the pain mostly didn’t affect my mood or my enjoyment of my travels and my surroundings.

A brief tabulation of the results of the experiment:

I can handle the stress of going from event to event up to a point.  But I do need to be more mindful of downtime, resting, drawing boundaries, making priorities and sticking to them, etc. This bodes well for being on Lenvima during a normal teaching semester.

My hands are about the same as when I left, and plane travel makes them worse, but they do recover.  Cotton gloves at night, with a bunch of goo smeared on my fingers beforehand, seem to also help.

The new annoyance was definitely my feet.  They flared up in Aarhus and ebbed and flowed the rest of the time.  There were some evenings where I was too sore to walk back to the u-bahn or bus and took a cab home instead.  And cobblestones aren’t great for foot pain either.  I brought home about 12 packages of the blister bandages that work well for me, and it looks like I can order more here, so at least that’s manageable.  

I did have to request a chair or seek one out at a couple of “standing” events, including a very cool gestural performance event two nights before we left. If I’m honest with myself, this did make me feel a bit weak or crip or old or whatever, and not in a way I liked, but I asked for the accommodation, I used it, and I was glad I did. I will continue to do so.

I have intermittent stiffness which slows down my walking, especially when I first get up. C’est la vie.

Dizziness continues to be a thing, but it is definitely on its own part-time schedule. I notice it on some staircases but not all (I always hold the railing now which, again, makes me feel old but also a little punk rock when I’m on the left side going against traffic), and occasionally unexpectedly at inopportune times, like when standing at the top of a Soviet War Monument (I made it down, carefully), or while peeing in a stuffy little bathroom in Provence (don’t worry: my aim was true).

I have no idea if the “avoid prolonged exposure to the sun” warning on some of my meds caused the nasty heat rash I got as it hit 40 degrees, or if I should just not hang out in 40 degree weather.

We ended our six-week journey in Europe with a week of vacation in Provence.  Vacation, it turns out, is great for everything.  My skin behaved better, my feet mostly healed except for a brief flare-up, and even though my pharmacy shorted me on one of my blood pressure medication (fuck, I thought I counted all my meds before leaving!), my BP stayed relatively close to normal.  It was hotter than hell, but we had a rental car with air conditioning, and our hosts had both shade and a pool.  Honestly, the heat probably helped us aspire to do less and relax more.  I read the news every day, and I read two interesting books: David Wallace-Wells’ The Uninhabitable Earth (which was apropos for a 40 degree heat wave in southern France), and Mary Gray and Siddharth Suri’s Ghost Work, which is always relevant so long as you’re connected to anything that claims to be a “platform” or “automated”—which just means it doesn’t want to tell you about the discounted human labour on which it relies.  

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.

Good news!  My tumour marker keep dropping.  It is down to 7.  That’s pretty amazing given where I started out.  It’s not the absolute numbers that matter, but the relative numbers that do.  If the numbers doubled in a short period, my doctors would be worried.  So that I’m down from 45 is a very good sign in the opposite direction.  I haven’t said much about the nature of the tumour marker, but it’s very easy to understand.  The marker is called thyroglobulin.  It is a substance in the blood that is made by thyroid cells.  If I don’t have a thyroid, which I no longer do, then the only thing that could be producing thyroglobulin is the metastatic thyroid cancer cells in my lungs.

More news: 18mg doesn’t seem that different from 20mg.  Maybe I’m a bit less nauseous.  I’m on 3 different meds that make me light headed.  For instance: 2 hours and 45 minutes into the Broken Social Scene/Besnard Lakes show on Tuesday night I had to make a decision.  I could either keep standing up and risk falling over and fainting from the stuffy air (which was also nauseating), or I could go in back and sit down against the wall.  I knew that was a possibility going in, but it has been proven to me as a going concern.  I did not want to be the guy that passed out or fell over at the penultimate Broken Social Scene show in Montreal.  I also want to still be able to go to a rock show now and then.
ALSO: the Besnard Lakes keyboardist played electric autoharp on one song.  Rock and roll!

I’m going to try quitting Gabapentin.  My dose is pretty low, so it’s entirely possible I will have no withdrawal side effects, but even if I do, I’m hopeful that this will mean less frequent blurred vision (mild enough not to be a danger but powerful enough to be annoying for reading from time to time) and fewer forgotten nouns.  If the pain in my hands comes back (we won’t know for about a week), then I can try Lyrica and see if the side effects are any better.  

My hands are holding steady, but I’m starting to have issues with my feet.  I’m wearing softer socks, and applying various ointments.  Also, foot pain is annoying but not distracting like hand pain.  See: the sensory homunculus.

My blood pressure is still not great, so I’m going on another med to see if we can get it down to where it’s supposed to be.

In other news, I made a slap bass playlist for my oncologist, and there are angry people in my cancer group.  

I sometimes like to think of my current condition as “shitty puberty.” Not that puberty is a fun ride for anyone, but this experience seems like a cut-rate version. Instead of well thought out, illustrated “what’s happening to my body?” books and parents talking to me about things I don’t want to hear about, plus all my friends going crazy at the exact same time as me, I’ve got glossy pamphlets and internet forums with random advice. Okay, maybe this comparison isn’t working….

But in this post I will talk about what is happening to my body. There’s a long menu of possible side effects for Lenvima. Here are the ones I have so far:

–The hand part of hand-foot syndrome. We’ve been over this. There is peeling and constant moisturizing. There is hypersensitivity to texture and to heat. For that I use hand creme (Eucerin: extra urea!) and sometimes my hands are too slippery to take a credit card out of my wallet, and my touch screens are hideous. And gloves for things that didn’t used to need gloves. Sudden online shopping for oven mitts and barbecue gloves isn’t on the side effect list but I’ve got that one.

The ambient pain appears to be well treated by Gabapentin, but as I’ve already written about, that leads to forgetting nouns. And I think it’s blurring my vision from time to time. Which suck, when I can’t properly see the screen or read a book. I’ve been in a pretty good mood most of the time lately, but is that my actual emotional state or is it the excessive euphoria that listed as a potential side effect? Though if this is excessive euphoria, that would make me actually depressed….

–My blood pressure is going up. I started at 120/80, and got up to 150/100. So now I’m on blood pressure meds and am creeping back down. They make my legs swell. Also I have to pee a lot, which wakes me up more at night. But I’m supposed to stay hydrated. Did I mention they also make my balance worse? And the blood pressure meds and the Gabapentin can lead to dizziness?

–Lenvima can raise hell in your digestive system. I had serious nausea at various times. But I got to the point of taking my anti-nausea meds preemptively, then I would sleep for 10 hours a night and wake up tired. Drag. Though the cause of the fatigue could also be the Lenvima, or the Gabapentin, or the combination of everything. A week ago Saturday I woke up, had breakfast, forgot to take my nausea meds, and felt ok. And I wasn’t tired. So now, I take the anti-nausea meds only as needed, and I’m less tired. I’d rather feel a little nauseous a couple times a day than exhausted all the time. But something else is also sapping energy, so I’m not at 100%. But then, I am bombing my body with what is essentially a combination of the best of modern medicine and late-medieval alchemy. Did I mention entirely random indigestion? Constipation? I’ll spare you the details on the latter, but thanks to advice from my pharmacist, I have learned that they have made some impressive advances in stool softeners since the last time I needed one, and things are getting better there.

–Weight loss is also a side effect. I realize I am a special case, but I kid you not, this one is awesome. The Lenvima Diet Cleanse: It Really Works! I’m going to shut up while I’m ahead here.

–This week’s new thing is waking up super early. I started writing this entry at 6am, and I’ve been awake since 4:30. I’ve had early wake-up insomnia before on and off for years, but this is different. My usual treatment is if I’m up early enough, get a physical copy of Harper’s (interesting but not too stimulating) and read it in the living room under low light until I’m sleepy and go back to bed. My problem? I can’t focus my eyes well enough to read Harper’s. So instead, I’m catching up on my blogging.

My rule on symptoms is that they don’t exist until I’ve had them for a week. So it’s not a symptom yet. It may be because of the bladder action. It might be something else. Or maybe it’s not.

It’s too early to tell. </rimshot>.