Super Bon! – Page 57 – Naturalized, but not natural

4

In honor of the World Cup, let us now say that EBR is in “additional time.” Substitutions are being made and players are making that last bit of extra desperate effort. It was supposed to be a six-week affair, but holidays and a broken x-ray have left me with 4 sessions next week, meaning Friday will be my last. After that, I will have an unspecified period of recovery.

After week 6, swallowing has grown more painful and the cough and soreness are enough to warrant some nighttime narcotics, which leave me wooly headed in the morning. The fatigue, happily, appears to be steady in its effects and I’m sort of living with it. Sunny days seem to help.

Also, Friday was a followup with the thoracic surgeon regarding a CT scan of my chest, the subject of today’s excessively literal haiku:

That blip in my lungs
they didn’t think was cancer?
It isn’t cancer.

Probably, anyway. No change since January. Followup in a year.

6

Sorry to remain quiet on this front. Last night was my first use of anything narcotic in the process. Which is pretty good, I think. Codeine cough syrup. It worked for the intended purpose (preventing dry coughing fits as I fell asleep) and I don’t feel too wooly this morning.

As to the dreams, the only one I remember is arriving in California and forgetting the cat at the airport and having to go back and get him. (Though this may well have to do with dealing with his airline arrangements yesterday.) Also the highway was really messed up.

8 / Immigration and Denaturalization

I had a 7am zapping today because they have an emergency patient. Let’s hope that doesn’t have to happen again.

For years, my plan was to apply for citizenship the day I was eligible in fall 2009. Since you can be a dual citizen of the US and Canada, there is no downside, and given that we live here and contribute to the economy and affairs of state, it would be nice to be able to vote and get involved in formal politics.

Of course, cancer intervened, and now I’m more than eligible, which means Carrie is also eligible. Tonight we went out and got our photos taken for the applications, and in 13-15 months, we should be invited to a swearing-in ceremony. At least that’s the plan. Getting the necessary documents together was a trip, though. One of the required documents is the “IMM-1000” — a “certificate of landing” — that is rather unfancy and unassuming. Nowhere does it say “THIS IS REALLY IMPORTANT. DON’T EVER LOSE THIS.” And yet, one gets complacent with one’s IMM-1000 when one is given a shiny, holographic Permanent Resident Card. Not only do we need it for citizenship, but apparently, we will also need it for some things related to retirement. So there’s been a lot of searching through old files, which I guess goes with spring cleaning.

9

Suspicions confirmed.
Hormone levels almost right.
A few more mgs.

10

We’re getting close to some milestones: 2/3 of the way through today, and two weeks from tomorrow should be my last day of radiation treatment. Symptom-wise, I remain cautiously optimistic. I can still taste and talk, even if I do evaluate food choices in terms of viscosity. The swallowing pain seems steady and the fatigue comes and goes and means I sleep more than I have in a long time–about 9 hours a night plus an hour’s nap–but I am still able to do stuff. The burn pain isn’t fun and it’s the first thing I notice when I wake up, but if I’m occupied by something I can forget about it. Apart from skin creams, I am thus far free of exotic drugs. Oh yes, there’s the electrolysis-like effect of the lower part of my beard falling out. But there are enough fans of the clean shaven look that I may give that a try even when I don’t have to. In the last couple days, I have developed a strange dry cough that may blossom into something nastier by the time this is all over. For now, a little cough syrup at bedtime is all I’m taking.

“The time this is all over” is a little unsure. Radiation continues to work after the doses stop, so it is possible some symptoms may get worse for a week or two even after the count hits zero (though whether and how I will use negative numbers on this blog is as yet undecided). The exact arc of my recovery isn’t something I can chart out, but I am still looking forward to the end of treatments, even if there will be lots and lots of followup.

Today I saw the dietician and got a radiation nurse. The dietician is pleasant and chatty but not much has happened since her initial instructions. She takes my weight each week, which fluctuates a pound or two in either direction but hasn’t started to plummet. Maybe it will, maybe it won’t.

The nurse was a new thing. I mean, I’ve had lots of nurses in the last year but as of yet they hadn’t been part of the EBR routine. I guess they make sure patients get connected with a radiation nurse when the symptoms start to get serious. And if nothing else, I’ve got a nice radiant burn going at this point. She took down a list of my symptoms and treatments, and asks lots of questions about my state of mind as well, which I suppose is a good thing since no other medical professional has asked yet (apart from the radiation techs, in a more “how was your weekend?” sort of way). Not that they need to worry about me, but it seems like a good thing to have built into the process.

And now, a little gross-out haiku from this afternoon. You have been warned.

Radiation sleep.
Cat rests on top, then vomits.
Sleep now, clean later.

11 (On Professional Websites)

In the comments to #13, Aimee-Marie asked:

I was considering putting together a simple website with some of my stuff (vita, pubs, etc) on it, but was given advice that this might lead to my information being “out of my control.” Since you’ve gone the other direction completely, I’m wondering if you had any energy to philosophize on this for a moment?

Yes, I have gone 100% the opposite direction. If I was an assistant prof on the market, I probably wouldn’t go into such detail about my cancer experience under my own name, but I certainly would have done it pseudonymously. I’ve written a bit about the experience of blogging and of being “out” so I won’t repeat that part, but then there’s the question about the professional website.

In general, I am totally in favor of a professional website for all academics looking to advance their careers. This is a preferable option to a website hosted by the department because you are in complete control of not only content and style but frequency of update. Departmental pages have a way of looking stale, and as the career develops, information proliferates on the web and it’s hard to keep track of. (In fact, I’ve got about five different sites all asking me for information right now, which I haven’t provided since I haven’t had a chance to even update my own site and have some other more urgent work priorities at the moment.) Of course, the downside is that you are are completely responsible for those things on your site, and you can’t really let it slip too much.

I’ll leave aside the how-to logistics (short answer: rent a domain name, and if it’s going to be a serious thing, rent hosted space; if not, use free space like wordpress provides). I recommend a simple and non-esoteric content management system, like WordPress, and a simple theme that looks good. The more flashy or complicated your site, the more dated it will look and the less compatible it will be. Set up pages with a CV that is updated once a year (don’t forget to remove your home address and phone if they’re on there, though anyone can find them if they want), links to your publications, a statement about ongoing research or forthcoming work, an “about” page, and a teaching page with philosophy and course syllabi. Do you give a lot of talks or travel a lot? Then add a section with that information so people can come see you. Then, make sure it’s part of your annual routine in August to update the thing.*

Anyway, do NOT add any content that will need extremely regular updating, or that will be a big hassle to update. The worst-looking site is one that has been dormant for a couple years.

A good example of a free, wordpress-based professional site would be that of my colleague, Becky Lentz. That path might be a good way to start, since you can always upgrade to something more expensive and elaborate (like the two-headed beast I’ve got going) if you get into it.

I cannot imagine a downside to having such a site in this day and age except for a neglected site, which is the internet equivalent of showing up to work in the clothes you slept in. As for the kind of personal blogging I do, or big confessions on Facebook, well, that’s a whole other thing. It does change the dynamic at work when everybody knows what’s up with your illness, but since it’s been 99% awesome and 1% annoying, I would definitely do it again.

That said, whoever said that the content on your site is “out of your control” is 100% correct in the sense that like all published material, it circulates freely and without your direction or permission, so you must exercise some caution in terms of what you put up. This blog has the air of full confession to it, which is fun, but I do leave things out. And for my five years as an administrator, there were many aspects of my daily life that simply could not be discussed here. So in part, it’s all an illusion.

——-

* In fact, this more or less describes the site I had as an assistant professor, though the section that’s now “academe” did exist in some form as well. I did host it on University of Pittsburgh’s server; I no longer recommend hosting on a university’s site. This blog didn’t start until 2004, after I’d arrived at McGill and set up shop independently of the university. And yes, Sterneworks is more or less a tweak on a 10-year-old design. I hired someone to transform the back end from plain html (that I worked up in Dreamweaver with “frames” and everything in 1998 or so) to a proper content management system in 2005. It worked out okay, but I think it’s probably time to update things a bit. I’ll try out some new looks and functionality over my sabbatical year. I’m running WordPress on Super Bon, and will probably switch Sterneworks to WordPress as well, just so I don’t have to keep track of the inner workings of two different Content Management Systems.

12

It’s Carrie here, doing a guest entry on the cancer crawl.

Today I accompanied Jonathan to radiation, for the first time. Jon’s got a routine down at this point: walk to the Jean Talon metro (getting some exercise in), take metro to Cote-des-Neiges, walk to JGH, enter swank cancer facilities, say hello to everyone he knows there (several people by now), drink a glass of water (or one of three kinds of juices, which is awesome), enter the green room, part hair into ponytails, remove overshirt (if wearing one), wait to be called into radiation room. This is where things get interesting, and rather awe-inspiring.

First off, the radiation room has a giant, 8″ thick steel and lead door, like something out of a Hollywood set for a Cold War drama or a hyper-security conscious “safe room.” This is radiation we’re facing here, so it’s good they have a thick metal door.

We walk through the door into this giant room. This is the biggest room dedicated to a medical procedure for one person that I have ever seen. It is really big. The machine that delivers the radiation is probably 10 feet high, and I would soon learn, it is attached to the wall but it rotates 360 degrees.

Jon has three radiation techs who help get him situated on the table. They all strike me as very young, and I noticed that they all have great hair. They were happy to see me, and filled me in on everything they were doing.

The techs line up Jon in part based upon a set of directions I see on a screen to my right. There are screens everywhere, and I know the screen is about Jon because it includes a photograph of his face. After they afix his mask to the table, there are also lines I see that have been drawn on the mask that will be used to orient him to the machine via 2-3 green lasers that the radiation machine casts from its right and left sides. I am relieved to see the green line lining up well with the right side of his mask, and just before I am told we must leave the room because the treatment is ready to begin, I see that a light is shining on the Jon’s masked chin, in a precise square shape. I think this is the “target area” — something about the lights and lasers feels very reassuring to me. Especially after having read that horrifying New York Times story a few months back about malfunctioning radiation machines, and the mis-targeting of several patients, to very detrimental ends.

The techs and I leave the room. The giant steel door closes behind us and Jon is now locked in, and we are locked out. Two of the techs take their positions at a computer with four screens. The far left screen is divided into four video camera shots of Jonathan lying on the radiation table. The second left screen is the one showing the radiation program running, with the amounts of radiation being given. The third screen shows an X-ray of Jonathan’s neck and face. This is the first screen the techs pay attention to, for it is how they line up the radiation beam to Jon’s physical position. Each day they start him on the table with an X-ray which they then use to calibrate the targeting of the beam based on the position of one of his verterbrae. This, I am told, is how his radiation oncologist told them to line him up. I guess there are other options.

He’s not lining up well today, so one of the techs goes into the radiation room, pulls the sheet under Jon, and returns to the control room. Radiation patients cannot move once they are on the table and afixed in their masks.

Once he’s lined up well and the machine is targeted, the radiation begins. The 10′ machine makes three turns, starting from his left shoulder and going across his body and around the right shoulder to the underside of his skull and then back around two times. While the machine is headed around, on the fourth screen I am able to see the exact shape of the radiation beam, which changes with each movement of the machine across and around Jon’s body. It’s pretty cool and weird. I hadn’t really considered that the beam itself could be manipulated so much. It seemed like there were about 40 different dimensions — or slices might be a better word — through which the radiation beam is directed.

Posted byCarrieJune 8, 2010June 8, 2010Posted inCancer2 Comments on 12