Despite the levity in the title and whatever other cheap laughs I can elicit in the upcoming lines, this is a deadly serious post about making impossible choices.
You will recall that my doctors put the choice regarding the second surgery in my hands, which was not a decision I particularly wanted to have to make. Happily, I have been relieved of the decision regarding external beam radiation. Well, I could refuse it I suppose, but I appear to be getting unanimously told to do it. My surgeon said he’d send me to a psychiatrist if I decided not to do it. And last Tuesday, Carrie and I met with the doctor who is now “my” radiation oncologist, and he gave us the hard sell. So it was an easy decision to make. Right? Wrong.
The evidence pool for external beam radiation and thyroid cancer is considerably thinner than anyone would like, both in terms of doctors and in terms of patient lore. The medical algorithms all point in my case to doing it, but it’s not like breast cancer where it’s a standard procedure. In fact, it’s very rare. Back in the late fall when I started looking into external beam radiation and people who’d had tracheostomies for thyroid cancer, I had to go to the US thyroid cancer listerv because there was nobody on the Canadian list who’d had it. I’ve since connected with a 60-year-old woman in Ontario who’s had it, and now a couple others are appearing on the Canadian listserv. The US stories are well, scary. Partly it was the emotional state I was in when I got lots of helpful replies from generous people who’d been through all sorts of hell. And many stories had an insurance angle which was frankly also not something I was emotionally prepared to hear. Now that’s in the distance, and Obama’s new healthcare bill is in the can (far from perfect but I will grant that it’s a major improvement–now if only we could just get rid of the insurance industry).
Part of it is how people describe external beam radiation on the throat. More than one person said “the most painful experience of my life.” It’s not the treatments themselves that hurt but the cumulative experience over six weeks of radiation cooking your throat from the inside out, as well as a burn on your skin akin to a very bad sunburn. That phrase makes it sound cruder than it is–the radiation guns are very precise, and I get to wear some kind of Hannibal Lecter-like mask during the treatment (happily, I will not have to wear it in public, though it might be a nice match with my head-mounted microphone and portable voice amp just to get people to stare a little more). Apparently the machine they do it on costs more than our condo. So that’s good. And they seem to have a pharmacy of pain medications they’re willing to offer me, from topical salves to something called “magic mouthwash.” I will not be shy in availing myself of them. And although I’ll be going in five days a week for six weeks, the actual visit is about 15 minutes and happens like clockwork, and the waiting room is pretty gorgeous.
But the acute temporary side effects are rough. In addition to the pain, which will develop over time (not immediately but over the six weeks), I will gradually lose the ability to swallow solid food, so I’ll be on a liquid diet. Good for the waste line but not fun. I guess it’s the sequel to my “feeding tube and hospital-grade GI infection diet” from February. Though maybe ice cream will still be good. Except that EBR will also affect my taste buds again. As with the radioactive iodine, that too will be temporary but unpleasant. My voice will get worse again, and I’ll have a nasty cough and cough up all sorts of stuff. Then there’s the radiation fatigue. The acute side effects will subside over several weeks after the treatment.
All that is scary, right? Now here’s the even scarier part: EBR makes it much harder to operate on the area that is radiated. Now, I’m doing EBR because it cuts the chances of recurrence more or less in half. But half of the chances I’d been given is still a significant number. My surgeon gave me a statistic that 33% of thyroid cancers come back and require additional surgery, so EBR would cut my odds from 1 in 3 to 1 in 6. But my radiation oncologist said he recently saw a study where thyroid cancers that not only jumped the thyroid bed but got into the trachea came back at a rate closer to 70%. Cutting either number by 50% is great, but since I’m already in the “3 of 200-odd” category, even the better odds aren’t great. In addition to greater difficulty for the surgeon, it’s apparently harder for the skin to heal.
Compared to that, the other permanent side effects like decreased saliva production (I’ll be seeing more of my dentist, but I like her) and inability to grow part of my beard seem laughable. Though since I’ve worn a beard since age 19, I may be consulting some adult male friends on the mechanics of shaving if the remaining facial hear just looks too weird.
But that’s some serious consider-your-mortality decision making. Or more accurately “consider-your-morbidity,” since it is still unlikely the cancer would kill me, but if it comes back, it might be disabling in one way or another that I will have to deal with. My case was heard before tumor board, so a lot of people talked about it and all my doctors are singing the same tune (and it passes the rigorous medical test of “would you recommend this procedure to your brother?”). So I am not doubting them. My radiation oncologist said some borderline cases refuse treatment but that I am not a borderline case.
The upside is that this will all be over sometime this summer and I should be recovered enough to arrive at Stanford right on time to start my sabbatical.
And once I get through all this, I’m in some kind of strange permanent liminality: I’ve cheated an early death, but all of a sudden I’ve got odds placed on my quality of life 10 years down the road (or ideally, more). As I’ve said in this space before, I’m not sure what it all means, but I think there are a lot of things pointing to my 40s as a decade of not-putting-off-the-things-I-care-about.