Genes, Genes, Genes

(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.

Fake news about artificial intelligence and fake news

One of the things I hate most about the current AI craze is the apparently sanctioned ignorance in business and computer science about how the rest of the world works. Canada’s “Leaders Prize” just announced a $1 million prize for an AI application to automate fact checking. This assumes that a “fact” exists in the wild and can be quantified. It also assumes that fact checking involves dealing with written information, rather than talking with people. Among other things, actual fact checking for actual journalism requires calling people up and running quotes or statements by them and getting their reactions. In its current state, machine learning systems are simply not equipped to do this work.

So here are my hot takes. AI systems currently have no reliable method for detecting facticity, and any measures of verification they come up with will be too limited to be useful for a real life situation. I’ll be quite surprised if at the end of a year, whatever they come up with will be able to tell the difference between the Jeffrey Epstein story and Pizzagate, or any other meaningful example of fake news in the wild as opposed to whatever controlled conditions they come up with. Second, lack of fact checking is not the main problem with news right now. Third, the problem with current fact-checking is that outlets like Facebook don’t actually want to do it and for-profit media corporations have eviscerated commercial journalism. Someone please contact me when a $1 million prize is announced for an AI-based solution to rapacious capitalism.

Minimal news is good news

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.

A brief medical evaluation of 6 weeks in Europe

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.  

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.

7 is a lucky number/WTF is thyroglobulin and why is it a tumour marker/didn’t want to be “that guy” at the Broken Social Scene Show

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.  

How to delete Adobe Acrobat MS Word Add-in for Mac desktop apps

Just because I lost two hours to this yesterday and it’s hard to find this information online* hopefully this will pop up in the search engines.

Search in finder for the file linkCreation.dotm and then delete it. Reopen MS Word and the problem should be gone.

This works on MacOS Mojave; I haven’t tested elsewhere.

Why would you need this solution? Here’s why I needed it. I installed a desktop version of Adobe Acrobat, which I had purchased before they went to their execrable subscription model. It added some code to MS Word (also desktop) that froze the application every time I opened a new document. NOT helpful. I deleted Acrobat using their Acrobat deleter app. The garbage code was still freezing Word. I found it listed in Word’s macros but was unable to delete it using the “minus” button in the macros list. Why? Who knows?

Since Preview does most things I need with pdfs, I just needed Acrobat for redaction. There are two options I have found outside Acrobat: 1) PDF Expert and 2) In Preview: add a black box over the text you want to redact, export as tiff image, reimport as pdf. That will destroy all the OCR but also make the redaction “stick.”

*It was buried in a thread on the Adobe support forums where the wrong answer was marked as the right answer.