Eulogy for Gary Thomas

Gary Thomas, one of my undergraduate mentors at the University of Minnesota, passed away on 29 August. I happened to be in town for the memorial on September 28th (I was at a conference upstairs!), and Richard Leppert–my undergraduate advisor and Gary’s close colleague, friend and confidante–asked me to speak as a representative of his students. I tried to reach back into my age 19-23 mindset to write this….

….

I’m here talking with you today because of how I met Gary.  Back in 1989, the U of Minnesota honours program had installed a 2-credit course called “Intro to the Arts and Sciences” where profs from different department would come speak to us about their discipline.  I was a first year undergraduate that year, trying to figure out what I was going to do in university. About halfway through the term, Gary came in to talk about the new humanities curriculum they were installing.  He was spellbinding lecturer on any subject, but I remember the hook that got me interested when he did a psychoanalytic reading of Star Trek that involved Spock being the brain, McCoy being the heart, and Kirk being the penis. My immediate thought was “you can do that in college?” It wasn’t too long before I was a humanities major.

My first class with Gary was his first ever offering of Gay Men and Homophobia in the modern West.  I think in 1991.  This was the first time he’d taught it and it was offered at night so that people who weren’t full time students could take it.  It was a major community event. People from all over the queer community flocked to the class.  I was maybe one of two straight men in the class, and in 1991 homophobia was still very thick and powerful, and it was still probably a rare or odd thing for straight men to mix with gay men.  When classmates asked why I was there—which was a frequent event in the first couple weeks—I replied that it was my first opportunity to take a class with Gary. Everyone seemed satisfied with this as a plausible answer.  That class was incredibly important for me as a teacher now, with students who are not only queer but genderqueer, gender fluid, and all shades of different.  On one level, they need to learn how difficult and dangerous it was to be gay way back in the 20thcentury—and I make a point of reminding them of the hard work of ACT UP, queer nation, and the queens at Stonewall (whose rebellion has taken on new meaning in the wake of trans liberation).  On another, the envelope-pushing nature of the class got me ready to make the same kind of space for my own students. And I have also tried to use my professor position to be useful to communities in Montreal.

Gary was a role model for me — a self-actualized adult, living the life of the mind, but with plenty of other interests besides his job, and who was confident in who he was.  When students came to his home at the end of a term somewhat later in my career, I remember being impressed at the kitchen and the organ. Our tastes run differently, but I now live in a place with a nice kitchen and a lot of musical instruments. Draw your own conclusions. And he was totally unpretentious. I remember he once said to a group of us that he was proud that he had students calling him at home—remember, this was in the days before email at universities, and he was unusually accessible. He encouraged students to be themselves around them and he made things easy for us in the right ways.

Gary also gave me some of my first tastes of academic research: I helped build a bibliography for his then brand-new Music as Discourse class.  Later when he suddenly had another research need, I got the call to go through old issues of Christopher Street in an archive in St Paul.  That was for Queering the Pitch, the first book of queer musicology. I remember being over the moon when I opened it up and saw my name in the acknowledgments. But Chip Whitesell, another Gary student who is now my colleague at McGill in the School of Music, reminded me that that work was a revolution in musicology, and that for gay musicologists, it wasn’t just the academic substance that mattered, it was about making space in the field to be out.

We didn’t keep in touch that much after I went off to grad school, but I remember visiting him once in Folwell Hall, with my partner Carrie, and we were joking about the awkwardness of some of our straight male professors. In fact, my education at Minnesota had failed to prepare me for graduate school in only one important way: large swaths of the rest of the world had not caught up with what was happening at Minnesota in those days.  Gary was a huge part of that. But more importantly for me, he was something every university student fresh out of their parents’ home needs: an adult I could look up to.  He wasn’t perfect—more that once we had to reschedule an appointment because he wasn’t so good at keeping a calendar—but even his faults spoke to his love of life. I will never forget his power as a lecturer, the gentle way he made space for us to just be, his unending kindness, and his love for life.  Rest in power, Gary!

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.