Super Bon!

So one of the big questions of life on Lenvima is how much can I push myself. The answer is “somewhat less than August.” We had a flurry of visitors through town early in the month, then went to King Crimson band camp for a week, which was a blast but not the kind of thing where you’re getting a full night’s sleep. Then I came back and it’s Mutek. And there’s a whole pile of deadlines I have to meet this week and next.

This morning I woke up on 6 hours of sleep, got on the metro to go to the Royal Vic (new location at Vendome) for my voice lift, and rode two stops past Vendome. So I got out, got on the metro going the other way. And missed Vendome again. I managed to get off at the right stop on the 3rd try.

Yesterday was a CT scan at the Jewish. Today is laryngology at the Vic. Long-time readers of this blog will know that a) I get vocal cord injections about every 18 months (“voice lifts” which help me talk, breathe and swallow with a paralyzed vocal cord) and b) I did not start out as an “easy” patient in this regard. It’s gotten a lot easier since that first visit and the doctor and I have a good rapport.

After the metro debacle, I arrived to find a survey. It’s weird to be subject to instruments that in other contexts I analyze (I had a student write an amazing paper on pain measurement surveys in my disability course a few years back). But here we are and my knowledge is working against me. What is a 3 or 4? What counts as “severe” or for that matter “always”? I don’t feel bad about my vocal paralysis–I have accepted it totally–but it is a pain in the ass (even one were to love oneself totally, it would still be possible to annoy the one you love). I guess that’s a 1? What does it mean to feel handicapped? This is an old survey so it’s obviously infused with what disability scholars call “the ideology of ability” but feeling impaired–well, that’s just a fact of life, right? Ok, 2.

Onward into the exam/surgery room.

Here’s a reminder that this post says “trigger warning, throat stuff.” Continue reading at your discretion.

Let me also say that for the record, I would and will do this again, and in fact would recommend it to other people who have paralyzed vocal cords and can’t have neck surgery to have them gore-texed into place (yes that’s a thing, but I’m not a candidate). Remember, I’m a “difficult patient.”

They’re using the high-definition camera today so I “know” it’s going to be a good day.

A resident will be doing the work under the doctor’s supervision. Okay–we’ve done that before, no problem.

I get the anaesthetic (sprayed up my nose, then down my throat, then injected). I’m good and numb. The camera goes up my nose. The needle with the goo to inflate my paralyzed vocal cord goes in and…the resident says “I’m low.” “Yes, you’re low,” replies the doctor. Lots more poking around. Finally they find the right spot and the needle goes in to inject the goo. There’s one problem. The “high” part of my vocal cord is not fully anaesthetized. I’ve been in worse pain, but it hurt like hell. They finish with that syringe and the doctor says he wants to put in a little more. I agree, since we’re “almost there.” He praises me for being stoic, which is nice of him. I am probably making faces the whole time so this is some kind of bizarre act of collective denial or social grace.

Out comes another syringe. The problem is they keep running into cartilage that bends the needle–or maybe scar tissue from my surgeries way back when. Anyway, it’s a problem to get the needle in the right place.

How much of a problem? This much:

It finally goes in but then I hear the resident say “it’s coming out the other side.” That’s not a phrase I really want to hear in this situation. We decide to call it a day. I’ll come back in six weeks and we’ll see how I’m doing.

On the way out, the resident offers me a band aid, saying “it’ll be less disturbing to other people.”

I suspect I just fixed that. BTW, the neck shot is a classic visual rhetoric of thyroid cancer, but that’s another essay for another time.

Having already abandoned the idea of attending a very interesting-looking set of AI-related talks at Mutek-IMG, I head home. After picking up some new drugs at the pharmacy and some groceries at the corner, I just want to go to sleep. That takes awhile as I can’t take any pain drugs yet because I’m still numb (not a good idea to swallow things with a numb throat). Finally, blissful unconsciousness arrives.

A short time later I awaken to the sound of jackhammers coming up through the floor into the bed. They are jackhammering our sidewalk. No more rest for me today.

On the plus side, a few hours later, I can say it’s already easier to swallow (having now taken said pain meds), and we’ll have a new sidewalk in a couple days. Talking feels funny–but it always does for a couple days after the procedure.

This was my birthday week — Tuesday the 6th was the actual day (which was some work, some fun and playing music), and we are “officially” celebrating tomorrow with tennis, eclairs and a visit to one of my favourite Montreal restaurants.

On Thursday I saw my oncologist. It’s mostly no news. My tumour marker is steady at 7.4, and we mostly discussed symptoms. For stiffness, he recommends keeping my joints “warm,” which I think just means moving them. I got a magic mouthwash prescription in case my mouth swells up again. And I’ve got a slight increase in my blood pressure meds because my diastolic is still a bit high. I also agreed to try starting Lyrica to see if it makes any difference for the nerve pain in my hands. As to the foot blisters, they come and go. They suck, I have to wear socks a lot more often than I want, and they affect my motivation to walk places, but they’re not a dealbreaker.

This is my 49th birthday (so I’m technically starting my 50th year), and I’ve known I’ve had cancer now for just under 10 years, and probably had it much longer than that. I have joked that being on Lenvima has more or less instantly aged me a decade or two, as I am now firmly middle aged in my ailments–none of which I had in February: high blood pressure, bad balance, stiffness (I even sometimes groan like a middle aged guy when I get up), various pains in my hands and feet and on and on. For all that, a chronic illness like this, at least for me, completely relieves me of the burden of a midlife crisis. It’s good to be alive.

(Title reference explained below)**

On Monday I was at my endocrinologist’s office. No big news from my meeting with him. Everything’s good. Except he said “it’s good that you’re wearing a hat.” I assumed it was some middle-aged bald guy advice (NB: sunburned scalp is the most disgusting feeling known to humans), but it turns out Lenvima can make you hypersensitive to the sun. As in: a sunburn of any kind is now potentially a second degree burn. This may explain why my prickly heat in Provence was the worst ever (<–also a gross feeling).

On my way out, I ran into my surgeon, whom I hadn’t seen in several years. I almost didn’t talk to him. We exchanged pleasantries, I went to the elevator, I hit the button to go down. Then I had a thought. My current book project contains an anecdote about me waking up during surgery in 2010. He was there. So I went back to ask him about it. He pulls out his notes (he keeps detailed notes on every surgery, which live in his phone), and we compare memories. If you want to know more, you’ll have to wait for the book (or the draft, this chapter is currently kicking my ass and I will need help).

I think I’m ending the conversation by asking him what he’s currently researching. It turns out he’s become an expert on thyroid cancer and genetics. He believes that within a decade:

1. It won’t be called thyroid cancer anymore because it will be referred to by the specific genetic mutation it displays.
2. Treatments will be gene specific and there will be cures for many mutations.
3. There was a brief aside about the worst Star Trek movie, Dr. McCoy’s tricorder and a cure for cancer (look it up).
4. We agreed that surgery is essentially a shinier version of medieval medicine.

But wait, there’s more. It turns out that deep in the bowels of the Jewish General Hospital, there is a slide with tissue from my thyroid tumour from 2009. In 2009 there was no genetic testing like this. Today, if they’d done the surgery, they would have sent the tumour out for testing as a matter of course. But, they can still do it for mine. The hitch is that it’s off-label testing. It’s probably not covered by my supplemental insurance or the province. And the test is $5000 (Canadian).* And probably, I don’t have a mutation for which a specific genetic treatment has been devised. But the test may yield information that is useful in the future, and there’s a small chance it will be useful now. There’s also a small chance that the cancer in my lungs isn’t the same mutation as in my neck, but it’s so small that the test is still worth doing. Getting the tissue out of my lungs, given the size of my thorax and the placement of the tumours, is risky procedure, so that’s not on the table since the Lenvima seems to be working and I’m not super excited about exploratory lung surgery for curiosity’s sake.

So yes, I am about to spend $5000 on a test whose benefits are probably theoretical. But I’d rather know than not know. I think what my oncologist said to me when I asked him about genetic testing is probably still true: that whatever we find out, my treatment will still be the same.

—

*Insert joke about “available somewhat later in Canada.”

**The title is a reference to Jeans, Jeans, Jeans, a Montreal store where you go in, they look at you, and pull a bunch of jeans off the shelf that fit you perfectly. Or, if not, they’ll be a size too small so you’re not insulted.

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.