Cancer Crawl, 10 Oct 2011

And now, another post about cancer!

This is one of those “good news/bad news” situations.

I confess to some unwarranted cockiness in the cancer department upon returning from California. As Carrie put it, we thought we’d “beaten it” for now. I returned from sabbatical many pounds lighter and a few sizes smaller than I’d left, and in many ways in the best health I’d been in at least since I’d started administrating in 2005, apart from some lingering issues noted in an earlier post.

Returning, though, meant going back into the Canadian medical system, which meant seeing all the various people on the team that follows me, as well as other doctors and specialists whom I hadn’t seen in a year or in some cases almost two years. That took a lot of time, but then, I got a call on the morning of September 14th to “come see my endocrinologist” the next morning. At that point, I was still in cocky mode so I figured someone had just cancelled and I was going to get to see him sooner (I didn’t realize there is now a six month waiting time when I made the appointment*). Then I heard from my ENT surgeon–could I stop by after class that day? That’s when I knew there was bad news. They never call you with good news.

So, the bad news: you know those spots in my lungs that they were tracking in 2009-10? Well, two had grown a little, and a new one appeared. They’re not big but big enough the freak out doctors. Which of course freaked me out.

Also, it’s too fucking soon. I only had a year off. That’s it. But unlike certain so-called Christians who have morphed their email harangues from critiques of MUNACA to suggestions that I should suffer to prove my devotion to the cause, I take a more existential position on suffering. It is essentially meaningless. And shitty. And to be avoided (apart from things like the pain that tells you to take your hand off a hot stove and grief, which as an adjunct of death and finitude, is unavoidable).

Now that we’ve got existentialism covered, we move to crises of ontology and epistemology. Nobody knows what the stuff in my lungs is. The spots that haven’t changed are probably something else. Those that have changed are probably metastasized thyroid cancer. At least that’s what they look like. The PET scan showed two cases where the granulomas took up the radioactive material injected into me, which basically means they were hungry for carbs, which is how cancer behaves. But there’s some contradictory evidence: the tumor marker in my blood is undetectable, which suggests that it isn’t thyroid cancer. It’s also not likely to be lung cancer, both because I have no risk factors for that (other than a family member that had it) and because the pattern is metastatic, not primary. Or so they tell me. It could also be some kind of lung fungus or the leftovers thereof, and as a MD friend told me in New York, “most people have stuff in their lungs.”

The doctors’ first response was to want to be certain before following a course of treatment. Modern medicine is algorithmic, which means that if you don’t know which one to use you’re in a lot of trouble, and I think this seemed like a crisis, at least to some of them. But there’s a cost to certainty: surgery. Because of the location and size of the granulomas, there is really not much chance of success of a needle biopsy. So the next option is a surgical biopsy of the lung, which doesn’t involved cracking open my check, but it’s pretty invasive, introduces lots of risks and probably would lead to a long recovery. The thing is, even if they determined it was thyroid cancer, the options for treatment are limited: they could give me another dose of radioactive iodine; they could put me on some awful sounding regimen called “soft chemo” which is a lifelong thing. But you can’t cut it out. And regular chemo or external beam radiation isn’t indicated.

Once I learned about all this, I was very unenthusiastic about exploratory surgery to confirm a diagnosis that might lead to people doing nothing. Happily, the tumor board met a little over a week ago and determined that the risks of surgery were not worth the benefits of certainty. I spoke with my endocrinologist on Friday who told me that they’re simply going to watch it every six months and decide what to do from there.

I would have blogged about this sooner, but it was bad enough not to know without having to explain to everyone I saw that I still didn’t know. It’s been a tough month between seeing doctors almost every non teaching day in a four week period (or so it felt) and the heightened anxiety and sleep deprivation that comes from doctors calling me in and telling me something was going to have to be done.

All that is to say, the good news is that nothing’s happening now, but I am left with some serious long-term uncertainty. The endo said “we might need to go in in a year’s time, or in 10 years’ time, or never.” For now, I feel relieved, but still a little edgy. We’ll see if it settles over time. No more talk of “having beaten it” though, even in jest. This is a chronic condition and a fact of life from here on out. Which is all the doctors have ever said to me.

I was joking with a friend this weekend that my best strategy going forward is denial. Which on an everyday basis (apart from being a properly compliant patient with regard to tests and such) probably is my best strategy at some level.

So for Canadian thanksgiving, I guess I get to be thankful for the healthcare system and the support of friends and family, and perhaps too for the moment, for the ambiguity of lung spots. . . .

Other good news: after taking about a week to settle, the voice lift is great. My voice sounds better and it is easier to speak.

* Note to Americans: don’t be smug about wait times. It was 8 months to see a dermatologist when I lived in Pittsburgh.

3 replies on “Cancer Crawl, 10 Oct 2011”

  1. Good morning, Jonathan! Carrie told me about your lung spots over the phone, but this helps to explain what is happening even more clearly. So, Judy and I are thinking of you as you deal with this ongoing problem. We hope to get together with your mom sometime this month and establish our own little support group. Love to you both, Kay.

  2. Here too, solidarity in denial!

    May I also propose a shift from ontological anxiety (fear of the unknown) to epistemological bliss? Because, really: what you don’t know won’t hurt you!

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