New Thyroid Cancer Canada Website

Thyroid Cancer Canada just launched their new website: http://www.thyroidcancercanada.org. I definitely don’t fit their main demographic but have found them to be an incredibly useful resource throughout my experience. Rita Banach their president, has worked tirelessly to update and modernize their web presence. Thyroid cancer is still underrepresented in the broader cultural discourse around cancer, and when it is, it is generally as “the good cancer,” which as you know, I hate. TCC has done lots to raise awareness and provide resources to people going through it, from all walks of life.

I’ve added links to them, and to the US-based Thyroid Cancer Survivors Association in my right panel.

If you’re looking for a place to donate some money, I would certainly recommend both organizations.

Pink Noises Book Launch, Oboro

Last night I attended the book launch for Tara Rodgers’ Pink Noises: Women on Electronic Music and Sound (Duke University Press, 2010). The book consists of a theoretical introduction and interviews with 24 women in electronic music and sound. In many ways, it is a classic work of feminist recovery as the histories of these fields are still largely told by men and privilege the work of men. I already had my autographed copy, but it was fun to go and congratulate Tara (who is finishing up an excellent dissertation at McGill-a feminist history of synthesized sound).

It was also a great opportunity to check out the Oboro space, which is a real resource for Montreal new media artists. Although I have a pretty well-stocked home studio at this point, there are times you have to work in a space that’s actually set up for audio, and their post-production studio looked really nice. They also had lots of other configurable spaces for artists working in a wide range of media. I am thinking about joining, partly to support it, and partly because I may want to use that post-production studio at some point.

As a special bonus, I asked some questions and my friend and colleague at Concordia Kim Sawchuk treated me to a history of the space and to a history of Studio XX, another important Montreal arts institution across the hallway. Not surprisingly, Oboro is partly an artifact of a combination of cheap real estate and good planning by artists in the 1990s (there is no doubt a similar story to be told about Casa del Popolo and Sala Rosa). As I said to Kim, I hate to sound like a real estate determinist, but there is a way in which the basic cost of living and costs of space are directly connected with an arts community and being able to pursue meaningful projects rather than simply working to sustain oneself.

MP3 Book Update

In the comments to the beard/mask post, Mark Walters (hi Mark, yes I remember you!) asks for an update on the mp3 book, with the “of course your health comes first” proviso. I am happy to think of myself as an author rather than a cancer patient, so here’s an update.

The book was fully drafted last summer and went out for review. It is now under contract with Duke University Press. Duke wants me to cut 10,000 words. (And lest you think they are being unreasonable, I am certain they are doing my readers a favor; the current draft is 140,000 words and there’s probably too much of me a) working stuff out and b) doing archival show-and-tell). The readers were very positive and had a few easy-to-implement suggestions. Of course, being the perfectionist I am, I want to do more. Also, the visuals aren’t as arresting as The Audible Past so I need to contract with an artist to draw me some diagrams that are visually striking and will endow the book with an appealing look. (If you know of someone who might be interesting and affordable, please pass along the information.)

I haven’t been able to work on it since the reviews came in. But I have this fantasy of logging a few hours each morning before external beam radiation treatment, at least until I am too fatigued to do so. I have no idea if this is reasonable. People’s reactions to EBR are widely variable and so I can’t really be certain of what mine will be like.

I also owe a couple people essays that I need to carve out of the ms (with some tweaking of course) and one “accepted with revisions” journal manuscript, and that will probably happen first as warm-up. Right now, it looks as though writing-in-earnest and EBR will start the same week — May 10th. We shall see.

In the meantime, some prospector nabbed the standard US domains with the name “mp3book” but I own “mp3book.ca.” Landed Immigrant status has its privileges. I have some ideas of what to do with it, though a book-related blog isn’t one of them (I am rejecting those kinds of “must keep going on this project forever or the site will atrophy” ideas out of hand in a grand gesture of self-preservation. I’m sure I will be giving talks on the topic for years but I would rather leave myself open to the possibility of a shockingly tangential next project if such a thing occurs to me while on sabbatical).

I also hope to finally get the wheels turning again this summer on the Sound Studies Reader.

Shaved, Masked

Okay, first of all I went for it and shaved. It took 45 minutes on Sunday night, probably closer to an hour to get the whole beard off and to actually look clean shaven, no doubt because I used an electric and I don’t know what I’m doing. Yes I cut myself in a few places. I’ll get better with practice, I imagine.

The results are less dramatic than I expected. I look younger. A mole I last saw in September 1989 (yes kids, that’s before the fall of the Berlin Wall) is no longer dark, but is the same color as the rest of my skin. The swelling below my chin post surgery (perhaps lymphedema? who knows?) is a little more obvious. It’s weird to feel my skin exposed to air, but I think I will grow to like it. Carrie was worried she wouldn’t like the clean shaven look but I think she’s coming around to it.

I did it to “commit to the process” as they say. I’d rather look clean shaven than hold onto my beard for some “I don’t want cancer to change me” reason and wind up with a crappy looking beard with a bunch of holes in it. I stopped shaving after high school (with a brief break in 1st year of university) because I had sensitive skin, cut myself a lot, and figured a once-a-month trim was a lot easier to manage. But the beard brought its own skin issues, so we shall see.

——

Today, I went back with my shaven face to try the mask again. Did it fit right? Apparently. But I don’t really know. You don’t normally wear the mask for very long, but I got a special treatment. They needed to do a CT scan to plot a treatment plan, but the CT machine was a bit wonky. The result is that I sat on the platform, in the mask, screwed to the table and sitting on my hands for quite awhile. A 20 minute appointment stretched out to over an hour. I’m glad the technicians were thorough, but I can say that being immobilized like that gets less comfortable after the first 15 minutes or so. Eventually they came and took off the mask while they had someone troubleshoot the machine.

Looks like my “test run” will be midweek next week.

The Week of Scans

Last week I had medical appointments: a CT scan of my chest to follow up on that dot they thought was nothing; an ultrasound of my liver to follow up on that light they thought was nothing; and a prep for my external beam radiation (EBR). The first two were uneventful and I expect no momentous news from either of them, so I will dwell on the third, which occurred Friday morning.

I don’t know why, but I went in expecting a chance to talk with the doctor one more time, perhaps because denial and fear of protracted pain and muteness dictate another round of “is this really necessary?” But I am clearly way past that point. There was no doctor, just radiation technicians, and the main event was the design of a mask for me to wear and getting a good mapping of my head.

The point of EBR is to shoot tiny beams of radiation in exactly the same place every day for a few weeks to kill off any remaining cancer cells and prevent them from coming back. To accomplish this, the patient must be in the exact same position each day, and the radiation “guns” must be in the same position each day. To accomplish this, they make a mask which they can then fasten to the table. It holds your head exactly in place so that you can’t move and the beams of radiation go exactly where they are supposed to. The mask looks like something straight out of a horror film.

Making it was a strange sensation. First a mouthpiece is made. Then you wear the mouthpiece and they pull a warm synthetic material over your face very tight, with only a hole for the mouth. This is followed by a lot of pressing and pulling, and then a cool sensation as the substance hardens into the mask. Then they take it off and cut out the eye holes with a very loud drill, and finish the job by testing it out, which includes screwing your head down to the table with it.

The blue ring is where they attach it to the table. I like that my name is on it, just like a jacket in kindergarten.

I know the claustrophobes among you are already freaking out at the close quarters and lack of movement. I want to suggest you have it all wrong. I want the thing to be tight and to be totally restrained. This is not because of some bizarre S&M proclivity on my part but because my fear is not of small spaces but of something I call false accuracy.

My favorite example of false accuracy is determination of the first down in American football. They have two officials holding chains (the “chain crew”) to see whether the ball is far enough at the end of a play for a first down. So it appears very accurate.

Except that the ball was placed there by a referee who more or less had to eyeball where the ball landed at the end of the play, especially if the player carrying the ball ended the play at the bottom of a pile. It looks accurate, but the accuracy comes on top of guesswork. If you prefer an academic reference, try Donald MacKenzie’s history of nuclear missile guidance systems.

All this is to try and explain the level of concern that filled me when one of the techs said to me “you’ll need to make sure your beard is the same length every day.” In theory, that’s not a problem. Except nobody told me about this ahead of time (she was apologetic–I guess the doctors are supposed to say something), so I arrived with my beard at some random length which would be impossible to maintain. My two options are, as I mentioned in the previous post, to shave it all off and shave every couple days with an electric razor, or to crop it very short every couple days. You would think after having a beard for 20 years I’d be dedicated to keeping it, but since apparently half of it will fall out during the treatment, I’m not sure this is the best option. In any event, the blog query has gotten no answers and the Facebook query has gotten one suggestion and a whole lot of “use a razor!” replies. While a very interesting retort to all those electric razor ads they run during football games, the suggestions are irrelevant to my situation, since I won’t be developing 20 years worth of shaving skills in the next two weeks and I was expressly instructed not to use a razor because it would be very bad to cut myself.

Anyway, that will have to be resolved by Tuesday, when I return to get double-checked. I was heartened to know that I would have to come back with my facial hair “as it would be” so that they could be certain of their accuracy.

The other thing the tech said to me was “try not to lose any weight.” Besides this being the first time in my entire life than any medical professional has uttered that sequence of words to me (unless you remove the words “not” and “any”) it is very likely impossible. Most people get on a liquid diet very quickly, some even go to a PEG tube, and many EBR survivors tell me they lost a lot of weight. After inquiring about this on the US survivors’ list, it appears they check every week at least, and there are stents and things they can give you (or just make a new mask) so that you’re in the same place every time.

While I found the whole thing interesting and curious, and shot the photos of the masking thinking “hahahaha, this will be great to put on my blog,” a few minutes later as I was exiting the hospital, a creeping dread befell me. I was due at school in 90 minutes, but I wanted to be alone. I really wanted to be alone. For the first time in quite awhile. So I went to lunch, ordered a salad with croutons (two things I will unlikely be able to manage as the therapy goes on), and read a chunk of Music and Cyberliberties in an effort to get my head in a good space for Friday’s faculty symposium.

Shaving Issues–Suggestions Needed

More news tomorrow but I am currently pondering shaving off my beard.

The thing is, if I go this route, I’ve been instructed to use an electric razor as it’s bad to cut yourself while undergoing EBR. I have been doing an informal survey of men and can’t seem to find any who use electric shavers of any kind. The responses I get from men I’ve talked to range from “no I don’t use one” to “electric razors are one of the most successful hoaxes perpetrated against men over the last 50 years.” If anyone out there can recommend a decent one (comfort is more of a concern than price), I’d be grateful. I was last clean shaven for about a month at age 19.

Carrie has never seen me without a beard.

The issue is that you need your facial hair or lack thereof to be roughly the same every day for six weeks during the EBR treatment. This sounds like not that big a deal–I could just trim my beard every two days. But it is quite likely all the hair below my jawbone will fall out. As one person on the US survivors list explained to me:

I lost all hair below the jaw line to upper chest. And that hair hasn’t come back and I had EBR aug-sept 2007.

Another wrote:

I imagine your beard would look pretty funny while doing EBR, and until it grew back it will be as smooth as a baby’s butt.

Comfort is definitely a bigger issue than cost.