Super Bon!

Thanks for the good wishes in the last post!

Before I get into my crazy man blogosphere rantings (okay, that might be a little bit of an overstatement), I suppose it would be appropriate to establish the facts of the situation.

First of all, they call thyroid cancer “the good cancer” because almost nobody dies from it if it is treated. At least papillary thyroid cancer, which is what I have. The usual treatment is surgery to remove the thyroid, and a course of radioactive iodine. The doctors then spend some time experimenting with getting your right calcium and thyroid hormone levels (with pills, of course) and eventually you reach the “new normal” (they can get it right quickly or it can take many months to get the thyroid hormone right). It’s not fun, but it certainly beats chemo or worse, death. One imagines other cancer patients looking at us and laughing. What, no chemo? What, no 60% chance of death? How can you call that cancer?

At the same time, this whole “good cancer” thing has a certain ironic tone to it. Unless we’re talking about astrology, there is no such thing as a good cancer. The word has a certain punch-you-in-the-gutness whether or not it comes with a death sentence. As with any kind of bad news, there’s not just my own emotional reaction, but others’ reactions to consider.

As my case got more complicated, I started feeling less and less okay about the good cancer schtick. But I’m getting ahead of the story.

I started out as a more or less regular case. In the spring of 2009 I started experiencing a set of weird, disassociated symptoms that were hard to figure out (though a local friend reminds me of health complaints I’d made in Fall of 2008 — I’d forgotten about those but it’s possible that I had symptoms even earlier). There were lots of tests and a good deal of waiting. I was diagnosed with asthma and given drugs (which helped some), cleared of any heart conditions (well, that’s good news!), and subjected to even more tests.

By fall 2009 they were zeroing in on the thyroid. I’d had a large goiter for some time but it had appeared to be benign, other than compressing my trachea and thereby aggravating the asthma symptoms. A biopsy done in September came out positive for papillary thyroid cancer.

The surgery was maybe 5 weeks after the diagnosis, and the plan was to remove the whole thyroid, take the rest of 2009 off to recover, and then be back in effect for winter term 2010. Oh, how I love a good plan. The tumor was nothing like what they expected. Your usual papillary tumor is soft and about 1cm in diameter, give or take. Mine was hard as a rock, jagged and sharp, and 7.5cm in diameter. It was working its way around my trachea and esophagus and was essentially slowly strangling me (which explains a whole lot about my mysterious symptoms). When the tumor came out, we weren’t even sure what it was. It could have been anaplastic thyroid cancer (the extremely deadly kind) or Reilly’s thyroiditis (benign but damaging because it takes up space). The biopsy came back as advanced papillary cancer. Apparently it had been in me for quite awhile–long enough to become unusually aggressive. Anyway, I walked out of the appointment to go over the biopsy results basically feeling like I had cheated death.

To add injury to insult, they couldn’t find my right vocal nerve. There was no evidence that it was broken, but there was no evidence that it was there. And even as I write today, there as yet is no evidence of it working. So they had to stop after taking out half the thyroid. If you lose both your vocal nerves, that means a tracheostomy and possibly total loss of the voice. With only one working vocal nerve, my left side has to compensate, and my voice is a shadow of its former self. When I first got out of the hospital the sound of my voice was somewhere inbetween Tom Waits and Marge Simpson’s sister (I’m not such which one). I can’t talk on the phone, and for awhile had to swallow to the right to close off my trachea. More on that in a subsequent post but so far this is my only major complication (not that there won’t be more, just that there aren’t any now). Of course it’s a total drag, but my voice changes every week or two so we don’t know what the final result will be like. I’ve got a speech therapist and will eventually see a laryngologist.

So as I write today, I am in recovery from the first surgery. AS I still have half a thyroid, my calcium and thyroid hormone levels are normal, and so I haven’t had to go through that particular hell yet. I’m going to have the second surgery sometime in January. This is now a “high risk” surgery (to my voice, not to my life). They will hook up all sorts of electrode to my left vocal nerve and apparently buzzers will go off every time they get close to it. I imagine a game of Operation:

Following that, I will still do the radioactive iodine pill, and there will be a period of a month to six weeks where I go to the hospital every day for an hour and they a beam of shoot radiation at me:

Of course there are risks and possible side effect with everything. As they’ve done scans for this cancer, they’ve also found some other mysterious stuff which of course leads to more tests. The ontological condition of cancer is uncertainty.

I’ve had lots of great support from people. My mom came up for the surgery (which was good for Carrie as well), and she will return in January. I’ve had a nonstop parade of friends visiting, which has been very good for me, since I haven’t gotten out that much. I’m starting to do a little more. I’m lucid enough to blog, and I’m starting to reply to emails (but good lord, there are so many). I’d entertained fantasies of a vacation in Florida for some sun over winter break, but that’s probably not going to happen. A vacation nearer to home, perhaps. I am still sleeping a lot. Surgery and general anesthesia affect everyone differently and I think I’m still dealing with some aftereffects.

So those are the broad contours of the situation. In the coming weeks, I’ll write more about different parts of it: the diagnosis, being “out”, the surgery, my voice, the condition of uncertainty, the Quebec healthcare system, and lots of other things.

Anyway, I thought a general overview would be good. The point of this is not to leave people hanging in suspense about my prognosis or condition.

Once again, I’m back. I have what has turned out to be an unusual case of thyroid cancer and I think I’m going to blog about it.

Summer’s hiatus was a plain, vanilla blog hiatus. My disappearance in October was directly tied to the discovery of the illness, the extra “part time job” that ensued as I went from test to test, and the fact that I was not fully public about the illness until such time as I was able to tell my undergraduate class shortly before my first surgery. Hence the silence here.

For some people, illness is an intensely private and personal matter. I have chosen the other route: being “out” about it in all the ways that a queer or trans person might be “out” about his and/or her sexuality. I’m not sure if it’s been a transformative experience for me (time will tell) but it certainly has been moving. The blogging will no doubt be a very public part of the coping or coming out process, but that’s what a blog is for, no?

As a bonus, this might be the only blog in your rss feed running over the Christmas holiday. We’ll see how that goes. I’m all about keeping you entertained.

In case this is the first you’ve heard and you are worried, it does not look like I’m going to die from this, though cancer does have a way of returning years down the road. I do have a few crappy months ahead of me, though, in terms of treatment. I’ve had one surgery and will have another in January or February. I will have radioactive iodine treatment and I will also probably have external beam radiation therapy, as my thyroid cancer has turned out to be especially aggressive. My voice is totally messed up and I am more or less unintelligible on the phone. I sleep a lot and take a nap every afternoon. The fog left over from the opiates and general anesthesia (from my first surgery) appears to be lifting. Those are the headlines.

If you don’t want to read about my own personal cancer stuff, then just look for other posts, when they come (and they will, eventually).

A few ground rules:

–> This is experimental and I’m hoping to take “cancer discourse” in another direction than the one it usually goes. I notice that Steven Rubio has had issues blogging about his kidney stones, and I am painfully aware of all the bizarre medical discourse circulating on the internet. I have strong opinions on how to deal with illness and I’m going to make them known, but as a hint: I am not looking for alternative cures, esoteric studies or explanations for the cause of my illness.

–>I am also not looking to turn this space into a support group for ThyCa survivors (yes, it has its own internet jargon). There are several really good support groups online, and I’ve learned a lot from reading and asking questions, but while some people really need the support group discourse, I have been blessed with very supportive friends and family in great quantity. I do enjoy talking with other cancer patients who share my dark sense of humor and particular worldview, so if you do, I’ll look forward to hearing from you. Otherwise, I recommend that you seek out one of the big survivor groups in your country.

–>I am on short term disability leave from work. The fact that I am blogging does not mean that I can go back to my job full time or do that “just one thing” you need done. Part of being an academic is being personally responsible for a lot of stuff, but part of being a person is occasionally turning inward to tend your own garden. If I did all those “just one things” I’d be working full time again and not necessarily doing the things that absolutely need to be done. In the winter term, I will be phasing in and out of my job as I am able to, with a clear sense of what I can and can’t do. If I can help you on your timeframe, I will. But if I can’t, I’ll need your understanding.