Drugs update for September

That was an intentionally innocuous title.

So the last post was nice and sentimental about starting school. I meant everything I said, but it is true that that post is not an entirely accurate reflection of what Wednesday September 4th was like for me. This one will be slightly darker. It will also involve explicit talk of excretion, so I am posting this as a warning to readers. Only keep reading if you don’t mind some body humour. This definitely crosses the TMI boundaries.

The short version: I am in week 2 of a very upset stomach. I hate it because it interferes with things. There is a name for my condition that sounds like a bad punk band.

Other side effects are more or less the same. Except I think the Lyrica was making me tired, so I went off it. It was also “fixing” the wrong pain–it did nothing for my feet or my hyperaesthesia. I’m already feeling more perky so I am inclined to believe my own theory.

That’s all the news you absolutely need. But as you know, part of my therapeutic practice is to report things in detail. So there is more to read, but if you read it, you can’t un-read it.

Scroll down at your own risk.

Here is a picture of a cat, to take up space.

Now I am going to take up more space…

Fuck Andrew Scheer.

Now I am still taking up more space.

Still here?

Okay, this post is about a phenomenon called the Lenvima Shits. It is not a punk band, though it should be. It is the reason why I uttered the phrase last week “I miss being nauseous.”

As you may know from prior entries, Lenvima messes with people’s digestion. Mine has slowed down radically, so I basically don’t eat much of anything after 8pm and nothing at all after 9 or I wake up with indigestion. I have had bouts of nausea on and off, which come and go, and are actually strongest when I’m hungriest, which is a weird phenomenology: one minute “I feel sick” the next “OMG I’m starving how about some nachos” and then “I feel sick” again, all within a couple minutes. Well, that’s all gone now.

You may recall that I treated my Europe trip as a sort of test for the semester. In a lot of ways it wasn’t, but I put my body under a lot of stress figuring I could bail out at any time. It convinced me I was ready to teach in the fall. Tuesday, before classes start, I was thinking “I can do this!” I was all excited.

So: it’s Wednesday morning. I’ve posted a sentimental post on this very blog. I get on the metro to go into school: it’s meet the grad students and then go into class. Everything is fine.

Then all of a sudden, it isn’t.

Oh. No.

Every time the train slows down, I am in agony. In my calmest possible voice, with my eyes watering, I say to Carrie “I’m going to get off at Berri-UQAM. Where do you think the nearest bathroom is?” I exit the train. I go into UQAM. I am clearly not the first person to suss out the right bathroom in my time of need. I make it to the toilet and feel like my entire insides, along with whatever metaphysical stuff may make up a human subject, have exited my body.

Frankly, I’m fine with being rid of whatever parts of my humanity I lost if it meant I no longer had an urgent feeling of needing to go to the bathroom. I am, in fact, as relieved as the people who may have need for the needle deposit bin in my stall.

I take the Imodium in my bag. It seems to work.

On my way out of UQAM, I express my solidarity to my striking workers, though even the word “solid” is upsetting to me at this moment.

I go into school. I don’t eat anything. I look suspiciously even at my water mug. But apart from that, the rest of the day is actually great.

But now, it’s a recurring thing. If I don’t take Imodium, I am sick — it’s not always full-on diarrhea but lots of intestinal cramping and surprise trips to the bathroom.

I try the BRAT diet for 3 days. Nothing helps. My discussion group suggests not worrying about it. Peanut butter helps, someone says. So I try peanut butter. That seems to work. Things start working again. Then they don’t. More Imodium. And on and on.

So, if I want to go out now, it’s drop an Imodium.

Teaching and meetings? Imodium.

Bar mitzvah? Imodium.

Band practice? Imodium.

My rule about side effects is that they have to exist for a week in order to be real.

Welcome to the desert of the real.

I am actually loving being back in the classroom (or my office) with students. That part is a sheer delight, but this whole “in the term” thing is a lot more physically demanding than I expected. I couldn’t hack it with the tiredness I was getting from the Lyrica–I would be fine and then hit a wall, and it was a hell of a wall. And I did not think I’d need an extra hour in the morning to get out of the house just to make sure my digestive situation isn’t going to cause a riot on the metro.

I have learned that there are people who more or less take Imodium every day and that that’s ok as long as I drink lots of water. This is from calls to the pharmacist and from my discussion group. This isn’t that surprising, since in cancer world, people take all sorts of drugs in amounts you’re not normally supposed to. I have also learned that people eat the weirdest things while having the Lenvima Shits, because, well, if it doesn’t matter what you eat, why not?

I’m still being conservative, but there are times (SO MANY ADS FOR PIZZA DURING THE US OPEN) that I have contemplated other foods. I may give in at some point.

In the meantime, I feel like one of those tech bros who want to live to 120 years old by being on some insanely restricted calorie diet.

They did say weight loss is a side effect. I’ve been dropping the pounds but I suspect we’ve moved from a drop to a freefall in the last 10 days.

20 Years In

I taught my first class as a professor in the fall of 1999. As I enter class today, this will begin my 21st year as a professor (my first class as a teacher was in fall of 1994, so that’s 25 years ago, not 20 but whatever). Undergrad and grad school were 10 years combined for me. This feels like a long time. Everything I can say to describe the feeling sounds like a useless cliché, or just a jumble of confused emotions (which would be correct).

Lots has changed since I walked into my University of Pittsburgh office sometime in August 1999 and found an “officially up to date” computer with no sound card (they weren’t wrong in terms of most professors’ needs at the time), and an unplugged 300 baud modem. I don’t have a scientifically accurate sample of how students have changed over the years, since I spent my early career at mid-level public US institutions and am now at a fancier Canadian institution, with all that implies. What I can say is the politics have shifted mightily, and contrary to all the whinging about millennials (I don’t think this year’s entering class even are millennials) the students are an absolute joy to work with. They’re serious, engaged, and ready to talk about complex and difficult stuff. In the 1990s people warned us new teachers about not mentioning the word feminism as it would turn the students off. Well that particular problem no longer exists, at least in media studies courses.

I always joked that my career goal was to get to “graduate student,” minus the poverty and angst. I am still happiest doing the intellectual parts of the job: conversations with colleagues about their ideas; conversations with students about their ideas; reading and writing and workshopping my ideas; doing research. It is also often a challenge preserving those parts of the job against the bureaucratic-paper-pusher-middle-management part of being a professor, which seems to grow each year as well. My own goal now is simply to focus as much as possible on the good or at least meaningful stuff and try and give less energy to the rest (especially now that I am acutely aware that I have limits in that regard).

If you know anything about the current politics of university, you should be able to tell from this entry that mine is a case of tremendous privilege, both in a global and in an institutional sense. So today, I’m taking a moment to be grateful both for the experience I’ve had, and for the positive role that higher education can play in the lives of the students who pass through our classrooms on the way to other things. That’s one of the main reasons we professors do what we do.

Here’s some good news

The drugs appear to be working.

Last week I had my semi-annual CT scan, and I got my results Thursday. The two largest tumours have shrunk by just under 1cm each. Now, before you get too excited, remember that remission is not on the table here. The goal of this therapy is to stop the cancer from growing. This is a chronic illness scenario, not a magic bullet scenario (at least on this protocol). So the shrinkage is visual evidence, confirming the blood evidence, that the Lenvima is working.

Yes, I am absolutely delighted.

I also don’t have to see my Onco for another month. So things are getting routine.

Side effects report:
I started taking Lyrica for my hand pain. The first week I started forgetting nouns again, though not as much. Nothing changed. 10 days in I was all like “this is bullshit, I’m getting off this” and the next day I woke up with no tingling in my hands. BUT: it does nothing for hyperaesthesia–my hands are still super sensitive. AND after talking with some people, I’m starting to think it may be the source of my tiredness. So, I may go off it. We’ll see. Tingly hands is better than needing 90 extra minutes of sleep per night and tiring out more easily.

Digestion is still a wild card from day to day. I will spare you the details.

I am still having foot issues, though epsom salt baths help. Carrie and I have cooked up all sorts of metaphorical descriptions for what the bottom of my heels look like.

I still get dizzy really easily. I am probably going to bring a cane to tonight’s Galaxie/Tribe Called Red show to see if that helps in stand up rock show contexts.

Blood pressure is still a little on the high side.

Ouchtime (Trigger warning: throat stuff)

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.

Happy birthday: you have cancer!

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.

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.