15

Finally, halfway! And still relatively asymptomatic. The skin on my neck and lower jaw is now pretty sore even with the cream (but less itchy). For now fatigue is steady in that I get bursts of it during the day but it’s not constant. Swallowing has actually improved a little since the 2nd day I was on magic mouthwash, perhaps because of its cumulative effects and also because I have been particularly attentive to the viscosity of the food I consume. And I drink vast quantities of water with meals.

After some inquiries this morning, I have it on good authority that the arrival of clowns and the breakdown of x-ray machinery yesterday was just a coincidence. They come once a month. Just in case you were wondering. One of the technicians said to the clowns that their timing was not so good. . . .

Yesterday, I awoke at about 6am for a 7am dose of radiation so I could attend convocation. Which is the subject of the rest of this post.

McGill splits convocation into several different batches, and the Faculty of Arts (of which our department is a part) is also split in two. We got the 10-12 slot. As part of the stage party, the other profs and I (and assorted others) gathered in the Arts building at 9:30 to put on our very medieval uniforms and hats. McGill’s regalia in red, black and various accent colors are far superior to the University of Illinois’, which are an unfortunate combination of orange and blue. Also, we got nice puffy brimmed hats instead of mortarboard caps. In any event, since the university loans faculty regalia if they don’t own any, we were happy to wear McGill’s. Actually, because I am a larger size and the regalia company is less than accommodating (despite several weeks’ notice), the rather ingenious convocation officer found me a larger sized gown that happened to be for a doctor of music. So while others in the arts procession who didn’t bring their own regalia got green trim, I got pink, which actually looked great. And I guess that will do until the Faculty of Music gets around to offering me a courtesy appointment.

Anyway, when the ceremony began, we put on our outfits and marched down the center of campus behind a guy with bagpipes. I was first in line on the right (not my decision) and it was loud, especially when we entered the tent set up for graduates. If you have never had the chance to march in step with someone playing bagpipes, I actually highly recommend it. It was an unexpectedly moving pleasure, especially walking into the space with the hundreds of people. We then took our place on the stage, sat through speeches, watched our students graduate, and then marched out two hours later (give or take). Alas, there is no opportunity to hood one’s own PhDs, and though some profs got up to congratulate their own students or students in their own program, I didn’t really figure out that this was normal in time to do it for my own student who was graduating and I had a slight fear of falling off the rafters in a most spectacular fashion, but it was still nice to be up there.

Also, completely by accident and not by choice, my face appeared behind the podium on the big screen on several occasions. As far as I know, this was not an issue except when the chancellor went on an unexpected excursus from his ceremonial speech to instruct the new graduates about how “you are in control of your health.” I’m sure it wasn’t in reality very long, but trying to keep a straight face at hearing about how we are all in control of everything was a real challenge, having just arrived from external beam radiation. Neither I nor any of the other cancer patients I encounter every day in the green room are “in control” of our diseases or our treatment. We have submitted, and maybe committed to the situation (at least I have), which is very different from being “in control.”

To be fair, maybe it was just how I heard it and my own state of mind given what I’m dealing with. But maybe it was the cognitive dissonance from the fact that it was the parents and grandparents in the audience who were more likely to be the cause of the healthcare-occasioned fiscal crisis than the hundreds of about-to-be-former undergraduates. Or maybe it was the fact that I don’t think the proper response to the fiscal challenges facing healthcare is to tell the sick not to be too much of a burden on the system. I don’t know anyone who wants to be sick. Or maybe it was just a dose of puritanism to go with those bagpipes I enjoyed. (Moral: there may be a social cost to enjoying bagpipes too much).

A portion of the most common causes of death are preventable (as he said, “eat right, exercise every day”). But death itself is not preventable, and neither is the breakdown of the body or mind given enough time and given the varying fortunes that life deals us. Every one of us will one day become subject to and in need of care from the healthcare system. The fact that healthcare costs will rise as the population ages is no doubt a cause for great fiscal concern, but I am pretty sure we will all eventually need some of it, no matter how well we take care of ourselves. That is not a fault; it is the human condition.

Happily, the other convocation speakers gave nice talks very fitted to the occasion (including my dean, who I did not expect to hear as a convocation speaker), the valedictorian got all the right laughs, the students smiled and occasionally showboated as they got their degrees, and the families and friend hollered and applauded, just as it should have been.

Healthcare policy and early-morning radiation aside, I would have to say that I have never really liked going to graduations, but I very much enjoyed this one, and would do it again sometime. And it was a delight to see our PhDs march across the stage.

As to bringing politics and morality into graduation speeches, I have probably spent a disproportionate number of words on what the chancellor said. But take it from someone who learned the hard way. It’s probably just not the right gesture for the venue.

(Stuck at) 16

Today’s post was supposed to be titled 15, marking the halfway point through external beam radiation (in terms of treatments, not days). But that’s not what happened.

I arrived 2 minutes late to my treatment, worried that I was holding things up. But upon arriving in the green room I found the family that’s always ahead of me, as well as another guy who has started hanging around after his treatment. It’s a full on social scene in there now. Anyway, it turns out that the x-ray machine which scans patients before we are zapped was broken. They gave us a 2pm estimate for the repair, and so we were shuttled back to the big sunny waiting room, which was an even bigger social scene. Hope & Cope was out in full force with a volunteer and there were also two clowns.

Yes, I said clowns.

They seemed keen to show me a magic trick, so standing there in my pigtails (I always “do my hair” in the waiting room while waiting, and hadn’t yet bothered to undo it), one of the clowns put a pen “through” a $5 bill, and then took it back out leaving no hole. I was satisfied, and they were too. File that under “psychedelic aspects of cancer treatment.”

So the ever-growing group of patients and I waited in Zone (aka, the sunny waiting room) for awhile. There was more talking with other patients. Wednesday is the day that I see my doctor, and so eventually I got in to see him. Since we had a little time (or he was in the mood to take the time, he had a medical student with him), after going over symptoms and asking for various drugs, I asked if I could know more about my treatment plan. That occasioned a trip into the “visualization room,” which I am delighted to say has nothing to do with “positive visualization” of any sort.

We sat down at a computer and he pulled up a CT scan of my head and neck and gave me a tour of the zone he was radiating. It’s from just above my clavicle to a little further below my jaw line than I had anticipated. In fact, he is deliberately trying to miss my salivary glands, which is perhaps why I can still taste stuff (except right after swilling the magic mouthwash, which has its own unique and unforgettable medicinal taste that stays and stays). He also explained that the treatment is entirely preventative, which I had surmised, but it was nice to have it confirmed.

After all that, I went back to the green room and inquired with one of the technicians, who said it would be at least two more hours before the machine was back online (this was well after 2pm; my daily appointment is for 12:30). Having been given my doctor’s blessing to take the day off and start up again tomorrow, I headed home. (I am sure I will have to make it up, which may alas push me into St Jean Baptiste weekend.) Tomorrow I am scheduled for a 7am treatment so I can make convocation. They assured me the x-ray would be fixed by then. I am disappointed not to change the number on my chalkboard, but I had to see my doctor either way, and it was nice to learn more about my treatment plan. And there will just be two day 16s on my sound art project.

I’d hoped to make a 4:30 keynote at the Canadian Communication Association today but alas, with transportation, a stop at the pharmacy, eating and showering, I wound up hopelessly late. At least there was the reception afterward. . . .

17

At yesterday’s radiating, one of the technicians asked me about my symptoms with the implication that I am doing unusually well. There are at least a couple that show up by week 4 that I haven’t had, though truth be told with the days off I am slightly behind week 4 (if I was right on 5-per-week schedule, this post would be titled “15” today). It made me feel good to think that I am “strangely asymptomatic” but I know that won’t last forever. As if in some poetic turn, yesterday two symptoms got worse. My burn suddenly looks uglier and more tender for reasons I can’t quite fathom, since I’ve been wearing the ridiculous Tilly Hat religiously to provide shade to my neck and it had been consistent for awhile. And my voice got a lot worse yesterday, though that is less of a mystery, between the smoke from the forest fire blanketing Montreal and all the talking I did yesterday in loud environments.

The “Learneds” are in town. For those who don’t know, most of the professional associations in the Canadian humanities and social sciences meet all at once each year. Which is good because they are all pretty small, but when you put them together, there are all sorts of interesting synergies, talks and chances to see what’s going on in other fields. I’m not going to very much this year since it’s a bit much to head out there, come back to get radiated, and then head back out (which is too bad because I have students presenting) but I am managing to see some people and attend evening social events. Last night was a really fun book launch party for 4 friends, followed by dinner. Foolishly, I resisted the allure of the dork-o-phone, so my voice is still pretty rough this morning.

Yesterday was a big day for other reasons, but that deserves a post of its own, which will come in good time.

18

With any luck, the symptoms I am experiencing will develop and plateau, rather than simply increase on some kind of curve forever. At least, that seems to be how my various medical professionals tell it. From here on out, something new may happen every 3 days or so. Right now, there is some pain with the mechanics of swallowing but no pain related to kinds of food (such as tomato sauce). If I swallow a little too much, it hurts and I get this weird pain that shoots down my right arm. If I had to guess, that would be the result of swelling.

Which makes me glad for the magic mouthwash. The compounds vary from hospital to hospital, but the Jewish seems to prefer a combination of a steroid, an antifungal and an analgesic. So 4 times a day I now gargle and swallow what is essentially a hydrocortizone smoothie. I can hear the voice of Homer Simpson in the distance: “mmmm, hydrocortizone!”

It definitely helps with the swelling, and although the taste is awful, so far it is the only bad thing happening to my taste. I’m also maxing out on the Tylenol, as the next step is codeine, which will put me to sleep. I’m not a big fan, at least not during the daytime.

This next week is a big one with the Learneds in town, but I am going to have to take it easy. Fatigue usually hits sometime in the afternoon post-beam, and pretty soon I will need to get back into the habit of a regular nap, so that I can function better the rest of the time.

Oddly, weekends are hardest as a day or two away from the beam seems to allow new symptoms to sprout or show themselves. I don’t understand it, but at least I’ve got drugs to ward off whatever happens next.