Running Toward Publication, Then Walking Away, in Culture Digitally.
Health Update: Suspended Attention
After last November and December’s adventures in cancer world, it isn’t surprising that I get a lot of questions about my health and emails wishing me well, often based on incomplete information. Of course since I have incomplete information, that’s no wonder. So here’s some slightly more complete information.
We’re back to watch and wait. Ideally, forever. But maybe not.
When I saw my endocrinologist before I left for India on Jan 9th, he read my situation a little differently than the oncologist, as in he thinks I’m in a different class of patient (and was unworried enough to want to talk about teaching evaluations, which I took as a very good sign).
But both of them are singing the same tune in terms of next steps. In a couple months (give or take) I’ll have a scan that will give us a sense of what’s happened since the “new” baseline set in December, and then we’ll do partial scans throughout the year. What they are looking for is when the cancer starts “trying to grow” at a considerably faster rate than it is right now. When that happens, the slow-growing thyroid cancer is trying to start behaving like a more aggressive cancer, so the drugs start. Once I’m on drugs, I’m probably on drugs forever. At least with the medicine at where it is at today. The thing is that “trying to grow” phase could come soon, or it could come in 10 years or even later. And there are no other experimental treatments to try right now (the lithium/radioactive iodine was their best shot).
So now we pay attention every few months, and otherwise we suspend attention. “Watchful waiting” it’s called, but I like to think of it as blissful denial punctuated by periods of intense ambiguity.
This is the best possible outcome at this stage, so around here we’re considering me lucky.
Some Suggestions for Improving the Humanities Dissertation and Defence at McGill
2. Because of the committee and funding systems we are moving to, GPS needs to get rid of “not close” requirements for committee members or at least relax them. Right now, McGill requirements are that a majority of the dissertation defence committee members must not have been closely involved with the student or thesis research. http://www.mcgill.ca/gps/thesis/guidelines/oral-defence
The “arm’s length” requirements are based on the idea that only people not involved in a student’s education can be objective enough to judge a thesis. This is out of step with common practice. Most American and Canadian humanities programs expect that a committee (or large portion of it) has been engaged seriously with the student at many different times before the defence, and in some cases, consistently throughout the program. This also appears to be the norm in humanistic Communication Studies programs in the US and Canada.
More on Cancer, Luck, and Behavioural causes
A day later, I’ve been pointed to some nice writings but scientists and statisticians. See here: http://pb204.blogspot.co.uk/2015/01/science-by-press-release.html
A few things become clear: 1) the coverage is of the press release, not the actual paper but 2) there are still major problems in the assumptions of the paper. The “luck” appears to be mostly an artifact of the press release and the abstract, though the analysis remains flawed. The lack of social and environmental analysis is definitely a property of the paper. And of course most of the journalists reporting it are innumerate to boot.
Statsguy has a wonderful critique of the article, but winds up writing about lifestyle as a cause for cancer, and I’m sorry, without environment and social analysis, that’s just bullshit. Yes, HPV causes cervical cancer and smoking causes cancer, but what causes smoking? And neither of those things are good explanations for breast or thyroid cancer, whose increasing prevalence appear to result from a combination of changes in diagnostic technology and practice and environmental causes.
So it would be wrong to say cancer in general is “behaviourally” caused. Some cancers are behaviourally caused, though even there, how you could say smoking causes cancer and not also look at policies that promote the tobacco industry around the world, I don’t know. Ditto for the HPV vaccine. If HPV causes cervical cancer and the HPV vaccine prevents the cancer, then it suggests to me the important behaviour is vaccination, not sexual activity.
There’s a whole layer of moralizing that goes on top of the behaviour talk–which is typical of American (and I’m assuming some other) medical culture. But that will have to be for another post.
Medical Research as Ideology: Cancer is Luck
A new Johns Hopkins study finds “luck” as a major cause of cancer.
This is a great example of how medical research turns social conditions into inevitability and writes ideology (the order of things is given and unchangeable) as if it were science.
While there is talk of personal responsibility as a possible cause for cancer (“behaviours”), there is no talk of social responsibility (which might have something to do with changes in the environment over the last few generations). The only known cause of thyroid cancer is radiation. Other cancers are well known to be environmentally caused. So if, as the article says, we know cancer is caused by a combination of “luck, environment and heredity,” and the luck is more important than we thought (duh), then the logical conclusion is that if we are concerned about the spread of cancer, we ought to be thinking about the environment.
Sure, I’m all for fatalism as an explanation for why I have cancer and the person who experienced the same conditions doesn’t. But since we know certain cancers –including mine–are greatly increasing in the population overall (at least in the US and Canada, I don’t know worldwide statistics), we might actually want to go looking for explanations and solutions.
2014 in Review
It’s been a really complicated year–some major highs and lows. We’ve spent the last couple days on unfinished business: seeing Laura Poitras’ gripping CITIZEN FOUR (highly recommended), doing our donations for the year, and it looks like I am actually going to get an article revised that I thought I might not be able to do.
2014’s highs included a semester at Microsoft Research and a month at Folger Shakespeare library, new friends and reconnecting with old ones, lots of opportunities to do original research of both the archival and ethnographic kinds, a really amazing graduate seminar and conference, five PhD students finishing, lots of great trips and talks and meeting new colleagues at distant places, and especially our first trip to Sweden. Also 2014 was the year I performed solo electronic music for the first two times (thank you Boston!), came out as a member of a country band, discovered the joys of modular synthesis, and bought an electric guitar and took a few lessons (I’m terrible but it was fun). The kittens have been a constant happy obsession since they arrived in August.
Lows included being apart from Carrie for weeks at a time, including when our 19-year old cat Ya-Ya died, and later when, her grandmother passed. My own medical adventures have been a bit of an emotional roller coaster and I’m still digesting it all. Carrie’s dad’s hospital visit was a bit of a scare and yesterday, I just learned of the passing of one of my best friends from graduate school, Greg Dimitriadis. Mortality is all around.
If I had the energy, I’d write a longer blog post (especially about Greg), but this will do for now. It’s okay by me if 2015 is a little less eventful.
I got what I wanted, sort of
So after having three (yes 3) of my doctoral students defend their dissertations Monday and Tuesday, my reward was to spend yesterday and today getting tests and doctoring. The good news is that they have decided to go back to watchful waiting for now. I will have another full body scan in three months (this time including brain) and after that, they will probably break it up into various different kinds of scans for different body parts. But I have to say meetings with a medical oncologist are nothing if not sobering. Right now the disease isn’t doing much of anything. It might continue to not do much of anything, but once it starts “trying to grow” it can move very fast and go from a slow-growing don’t worry about it cancer, to the standard aggressive, take over your body, lights out kind of cancer. And I’m now fully in their system, which is quite functional and efficient, but I’d definitely not be at the place I’m obviously at in triage. It means they think it’s serious.
Now more of the good news. The oncologist said “I’m not impressed by your tumour.” Music to my ears. The CT scan report shows my lung nodules are more or less unchanged since July. The big one was measured a little smaller, but within the realm of human error, so I don’t think the radioactive iodine had any effect. My thyroglobulin is down (that’s the tumour marker in my blood), which is very good.
They also assigned me a primary care doctor (oh the irony, I now have two and many people in Quebec have none), who specializes in young adult cancer patients. Because that’s my category.