Cancer

Ambiguous Cancer Update for 2014+New Website

by Jonathan Sterne on August 20, 2014

It’s been a long time since I’ve blogged about cancer.  Partly this is because being post-treatment is part of my life.  But every year I go in for a scary scan, and every year it shows the same thing: there are some nodules in my lungs, probably metastatic thyroid cancer.  They have been growing very slowly.  This year’s scan showed the biggest one had grown by 3mm.  Since 2011, it’s been “watchful waiting,” since the alternative they offered me was exploratory lung surgery that had no curative purpose–all it could do would be a positive diagnosis.

This year, things are different.  They have decided to do another dose of radioactive iodine, combined with lithium (this part is based on new research) which is supposed to make the cells hungrier for iodine.  To refresh your memory, radioactive iodine is administered as a pill.  I am then radioactive for a week and have to stay away from people.  Happily, this can now be done as an outpatient treatment, so long as I have a toilet of my own.  I managed to get it schedule while Carrie is giving a talk at Michigan October 30th.  So I will be glowing for Halloween.  Not actually, but I kind of wish I did glow.

I went through RAI in March of 2010 and it was relatively painless apart from the unpleasantness of isolation and a hospital stay.  There can be nausea the first day or two, and I couldn’t taste sour for about a month.  For two weeks before I have to go on an insane low-iodine diet.  (The diet is insane because iodine is in pretty much every processed food and most commercially available salt.)  The outcomes of this year’s treatment, close to the 5th anniversary of my first thyroid cancer surgery, are unclear.  It might do nothing.  It might slow down the growth of the cells a little.  It might clear them out a lot.  Or it might get rid of everything (for now), which would allow me to actually claim that I am in remission.  We don’t know.  But the risks are relatively low.  And honestly, this is what I wanted them to try in 2011 when they found the growing spots in the first place.

There’s not much else to say on this subject until mid-October.  I may do a low-iodine food blog starting around October 15th, since that will be fun and experimental, and I’m not fresh off a 17-day hospital stay (as I was in 2010 when I last went on the diet).  And there’s not much for you to do.  Food gifts are unnecessary now and will be useless while I am on the low iodine diet, since if I don’t cook it myself and know exactly what’s in it, I won’t eat it.

I owe the world a voice and swallowing update, but I’ll write that separately

AND BONUS NEWS:

Unrelated to the latest treatment plan, I have created a website called http://cancerscapes.ca .  I blogged my cancer experience in 2009-10, and now it can be read in proper form from beginning to end.  I also made a series of audio projects during cancer treatment, and they are now all listenable (total duration=@30 minutes).  The “..and this is my voice” piece was  anthologized by New Adventures in Sound Art in 2011.

Cancerscapes is a living archive.  The text section of Cancerscapes will automatically add new entries as well, like this one.  And who knows, there may someday be more audio to include.

Public Speaking 101b

by Jonathan Sterne on February 1, 2012

Okay, so I’ve been going to the speech therapist to see if there’s a way I can get back to giving talks while standing without my head spinning after a few minutes. Last time we worked on breathing, which helps but not enough.

Today, I learned that I still use volume for verbal emphasis. Which is stupid because my voice just breaks up and it’s as if my breath is leaking out of my head, and my voice doesn’t get a whole lot louder. If I switch to pitch, I do a lot better. But it sounds a lot easier than it actually is. You don’t just will yourself into another style. I’m not really a sing-songy talker. Also? I try and avoid that Canadian guy uptalking thing?

Not being able to “turn it up” is also a problem at work and in my social ife. People get conversational space by speaking up — whether we’re talking about dinner parties or meetings. I used to be right at home in that milieu but now I can’t do that, even though my voice “sounds” normal. So when a person facilitating a discussion in a formal setting like a meeting says “let’s just be cool and talk” it’s actually a real problem for me. So I have taken to raising my hand even when nobody else does. It sort of works. As for dinner parties, there have been a few nights where I just wear out and listen instead of talking.

Other news forthcoming.

A “Tipping Point” Just Happened Inside My Throat

by Jonathan Sterne on January 31, 2012

Well, that was fun. As predicted in October, the voice lift I had was temporary, and it’s pretty much gone now as far as I can tell. I’ve noticed it in my voice, which has lost strength, low end and is more hoarse (the guy at our local fruiterie asked if I had a cold as I was checking out the broccoli and mozzarella last night). More like what it was in the early fall. But the place I really notice–and miss–is swallowing. After paralysis, I relearned to swallow. Then I relearned again after the voice lift but it was much easier. Now I am relearning my original relearning. Especially not fun with pills and, oddly, long pasta noodles.

I phoned ENT at the General yesterday for my next one. I don’t have a date yet, but this time, I will be ready.

Cancer Crawl, 10 Oct 2011

by Jonathan Sterne on October 10, 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.

Voice Lift Review: Or, Laryngology Phenomenology (not really, but it rhymes)

September 24, 2011

Well, I don’t really recommend the operation for a good time (graphic details below the line for the curious) but it certainly has had an effect on my voice. It sounds different and it’s easier to talk. I would definitely do it again. My friend Derek says that before my voice sounded like my old […]

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Voice Lift: Why I Shouldn’t Have Been So Critical of All The Plastic Surgery in Los Angeles

September 15, 2011

During our six weeks in LA, we saw a LOT of people who had plastic surgery. At least in the wealthier parts of town, it is part of the culture, and one can talk casually of having “work done.” For example, a friend of ours who is 50, newly single, and drop-dead gorgeous was asked […]

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September is Thyroid Cancer Awareness Month

September 9, 2011

More information here and here. It’s good that this is the month to be aware of thyroid cancer because boy, am I sure aware of it. After a year away, in which I could effectively spend most of my time living in denial, I’m back in the medical system with lots of followup appointments and […]

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