Super Bon!

This went out to my email distribution list last night. Not much of it is new news, except maybe the part at the end where I talk about my feelings, which as usual are somewhat inappropriate to the situation. But hey, they’re mine and I’m keeping them.

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Dear Friends Near and Far:

Here’s your latest Jonathan Sterne cancer news. I’m Jonathan, your host and subject.

HEADLINES: This week, I started external beam radiation. I’ll have 30 daily treatments over 6.5 weeks. The treatment is outpatient and I’ll be able to more or less lead a normal life for part of it. It’ll be fine at first and then will get pretty unpleasant, but most of the really nasty stuff is temporary. In the meantime, my voice has sort of come back (until EBR steals it again), and I’m still hypothyroid but getting closer to normal. I’ve been working and seeing people. After 20 years of having a beard, I shaved it off since it was going to fall off anyway. Carrie and I are looking forward to sabbaticals together in the fall. A picture of my radiation mask photoshopped onto my faculty photo is available here: http://superbon.net/?p=1286 (note that the news in the accompanying post is out of date).

WHAT I WANT: Lots of people are asking what I want. I got so much stuff from the first couple rounds of treatment that I don’t need any more stuff. I am still behind in my reading, watching and playing from that bounty. I also don’t need food brought over since at some point eating will be difficult and tasting will be strange, and I don’t really know when that will be. So mostly, for the locals, I would say the thing you can offer me is company. For now, I want to keep up a regular but not-too-brisk social life while I’m going through this. What that will consist of will depend on where I’m at in the treatment and whether the World Cup has begun. So if you’re around, drop me a line. If things get really ugly, I’ll make Carrie social coordinator again, though she always prefers it when I’m doing it.

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THE LONG VERSION including gory details:

Since your last update, lots and nothing has happened, depending on how you look at it. Until this week, I’ve had no new treatments. But that has allowed time for actual recovery. My voice sounds better than it has sounded at any time since my first surgery. I still won’t be lecturing without a mic, and am still sometimes misheard in loud environments, but my voice is sort of like a normal person’s that cracks once in awhile. All of the side effects from my radioactive iodine are gone, and I can taste again. Miraculously, my parathyroids are now working which means that after all I won’t be on calcium pills the rest of my life. I am still “hormonal” and they are experimenting to get the right synthroid dose. I have been hypothyroid for a couple months now and it’s not particularly fun. My main symptoms at this point are related to that. I also had a bunch of tests and scans since March and if they were done a year from now, I think I’d be pronounced in remission. So now we just wait until next year and do it again.

I have been officially back at work for a few weeks. My capacity to get stuff done is still diminished by the fog and exhaustion that accompany hypothyroidism, but it’s really nice to be around people and I am keeping it to a regular full-time job instead of all the extra hours I usually log. I have been keeping a semi-regular social schedule as well, and Carrie and I escaped to Vermont for a 72-hour mini-vacation.

So now that I appear to be on the road to recovery, I am taking a final detour: external beam radiation. Over the next six-odd weeks I will have 30 daily treatments of external beam radiation to my neck. It’s 5 days a week, minus holidays, so I will go into a 7th week. The treatments themselves are a little weird but painless. I go into a room, put on a custom-fit mask and get attached to a table. Everything is aligned just so: they have drawn a bunch of dotted lines and crosses on my body for aligning the radiation machine. It looks like I have some lame tattoos. The one on my chest looks a little like a fork or a trident, the one on my shoulder looks like a crucifix and a dotted line. Very heavy metal.

Once the machine is set up, everyone runs out and some radiation beams are aimed at very precise places on my face. The whole thing takes 15 minutes, plus commute. On Wednesdays I see the doctor and on Thursdays or Fridays the dietician. Beforehand, I hope to get into the habit of visiting the gym at the Hope and Cope. So I’ll have a little routine in the middle of my day. The problem is that the radiation effects are cumulative. I’ll start by offering a lightly edited version of what I wrote in my March 28th email since it’s the same information:

My voice will probably get worse again. There will be “sunburn-like” pain both on my skin and inside my throat. I will be coughing up all sorts of stuff. 2-3 weeks in I will probably find it too difficult to swallow solid food, though some patients have managed to do so. They did assure me I wouldn’t need a port or feeding tube–I’d just be on some kind of liquid diet. My taste will be affected again. Radiation fatigue also sets in after awhile. All of this will eventually go away some weeks after the treatment and they will give me various pain medications.

Long term side effects range from the comical to the abstractly scary. I will have decreased saliva production, which means drinking lots of water and more dentist visits; but I like my dentist. I will likely be unable to grow part of my beard on my neck.

The scary permanent side-effect is that the irradiated area becomes much more difficult to operate on and heals much more slowly (though this appears to still be in the range of morbidity, not mortality). The point of EBR is to greatly reduce the chances that another operation will be needed, so there’s some yin and yang to it.

I’m not exactly excited, but I’m eager to get it over with. I have a feeling that this treatment is somehow different. It is exceptional: even the staff in my surgeon’s office don’t know much about EBR because it’s so rare for thyroid cancer patients. It also occupies an ambiguous status between curative and preventative. People have asked if I am afraid, but fear isn’t exactly the right word. I woke up Tuesday morning excited to begin so that it might end. But that feeling is mixed with something more like dread. I know what it’s like to be in pain (though this will be a new, different pain), to have my senses dulled, to lose my voice, to be “off” food and to generally feel debilitated. I am certain I won’t like it and that there will be a period of a few weeks where I am really down and out. But it will happen gradually, at least, and I’ve certainly had enough practice at this sort of thing at this point.

To use a term sometimes applied to chemo patients, I have “committed to the process.” I shaved off my beard, since large clumps of it will likely fall out, and I may not get them back. I actually kind of like being clean shaven, though I don’t like shaving. Other EBR survivors told me to eat my favorite foods in case they never taste the same again. That’s kind of hard for me to figure out, since there are so many contenders. But I’ve tried to take the advice without going too nuts since it’s very easy to gain weight while hypothyroid. There will also be some milestones unrelated to being a cancer patient that I can celebrate during the treatment: the official end of my 3-year term as chair on May 31st, Carrie’s tenure letter (which should arrive by sometime in early June) and our 20th anniversary.

Given the good outcomes on my tests, this is the last stretch of cancer treatment for now, and it has a definite end-date. That is perhaps my favorite part of the whole thing, even if I can’t quite pinpoint it. My current estimate is June 22nd for the last treatment, but I can’t be certain since the radiation department does like their holidays. After that, I will recover and then get on with my life. We are already making plans: we have a rental agreement for a place in Mountain View (near Palo Alto) and will be at Stanford as of September 1st for our sabbaticals (and our place here is up for sublet for the same period, though we don’t yet have a tenant). If I am very lucky, we be in Rio de Janeiro for my 40th birthday in early August. If I am too debilitated, we’ll stay here and enjoy it with friends.

I am not yet certain whether I will send another update to this list, as my fate is more or less laid out. This is either the ultimate or penultimate Cancer Crawl for now.

As always, much more detail, along with illustrations, may be found at http://superbon.net ; and continued cancer updates for the curious can be found via this link (if you want to skip the rest of the blog): http://superbon.net/?cat=74 .

And as always, thank you for your support and for reading. I can’t really recommend cancer. And I promise never to be one of those “cancer is the best thing that ever happened to me” people. But if I had to get cancer (and apparently I did), it has been positively liberating to conduct this illness in public, and to not worry about who knows what, to be able to write everyone with the same details so I don’t have to rehash them too much, and to be free of the little social melodramas that sometimes accompany major illness. For that, I thank you all again. I’ve gotten lots of nice gifts over the past 8 months, but the best gift has always been and will always be friendship and companionship.

Sincerely,
–Jonathan

There are two running counts on our chalkboard at home. The first is a counter of actual days until my term as department chair is up (31 May is the last day of my term). That number is at 19, though the chairing is pretty light in May and I’ve had lots of help from colleagues. Still, I’m going to feel like I can really bookend an accomplishment (is that a metaphor?) when that number hits 0.

The number in the subject heading of this post is the number of external beam radiation treatments I have left. I hope it’s not approximate but I don’t really know. I was told I’ve ben scheduled for 30 treatments, so today would have been #2/29. The measure is in treatments, not days. So weekends and holidays at the Jewish General (including the next two Mondays) don’t get me any closer to 0. Perhaps it’s not healthy to count down like this, perhaps it is. I kind of like it. This is my last course of thyroid cancer treatment for the near term anyway, and the final obstacle to whatever approximation of a full recovery I can make.

I learned more about the machine today. There are these different parts that swirl around you. The beam shoots at me as it’s moving around, so the noises that it makes while it is sitting there looking at me are its “getting ready” noises. The staff were also faster at moving me around, so I was in and out much quicker.

The whole thing definitely feels a bit “I’m living in the future” science-fiction-y. The machine is very, well, machine-like and there is a small fleet of technicians (okay 3) whose official job is to attend to my treatment. But really their relationship is with the machine, and I’m just an intermediary. Of course, from my perspective it’s the opposite, since it’s me and the machine that get to spend 15 minutes of quality time together, utterly shut off from the rest of the world.

As M told me, there is something different about radiation oncology. Everyone is so nice and friendly. The spaces are beautiful. When I first visited endocrinology at the Jewish I joked that someone had redecorated it after a visit to Ikea. If that’s the case, then radiation oncology is more like Zone (a higher-end modern housewares store, for the non-Montrealers who don’t get the joke). So of course I call endocrinology Ikea and radiation oncology Zone, because in classic American fashion I like to give everything nicknames. It makes sense, though. The treatment is slowly debilitating, so they want to make the space as welcoming as possible so you keep coming even when it gets rough. I joked at one point that the waiting room was nice enough to make it worth the side-effects. Except that patients in EBR go into a secret, super-special waiting room that’s not as sunny. They call it the “green room” because there is green glass on the outside, but the broader cultural resonance is also pretty thick.

Anyway, the EBR room is gigantic and separated from the rest of the hospital by a massive concrete door (with the obligatory “warning–radiation”) sign and thick walls. The machine itself cost more than our condo, and can do these sort of pirouettes with its different parts during the treatment. I started to discern a pattern of movements. Once I decode it, I will know what marks the beginning, middle and end of my treatment, assuming they do the same thing each time.

Today I also had a getting-to-know-you meeting with a resident, but not much news was to be had on that front, as he hadn’t really looked over my treatment program yet and I don’t have any symptoms yet. He did tell me to try and avoid using creams and lotions until I need them as they actually adjust where the maximum impact of the radiation is–too thick a layer of lotion on your skin and the radiation effectively burns closer to the surface. Interesting theory and the opposite of what I read on the advanced ThyCa listserv, so I don’t really know what to think.

I keep getting these burning feelings on my skin and then I remember; that’s razorburn from the electric shaver. Duh. I haven’t had that in over 20 years. I’m a little hoarse now and then and maybe my mouth is a little dry. Or maybe I’m just noticing how things always are but anticipating their transformation.

Anyway, the numbers/how many treatments I have left in the title seem like a good conceit for the time being, so I’ll keep with it.

Tomorrow I’m back at 7:45, then I’ve got more reasonable times.

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Endnote: I have picked up this odd habit of dropping the first person pronoun in my writing. I typed “Haven’t had that” instead of “I haven’t had that” and had to go back and fix it. I keep doing this. It’s probably just hypothyroid brain fog but it’s fun to think there’s a more profound existential explanation.

I had the first treatment today. It was uneventful and painless. It took a little longer than 15 minutes since they were getting used to me and adjusting my body on the bed. The mask was nice and tight. I was hoping there would be a laser or light sabre or something spectacular but I couldn’t even figure out which part of the machine was taking pictures and which part was shooting radiation into me. The tech had to explain it to me after. More tomorrow, since I’ve got an early-morning wakeup.

This morning, when I had planned to be writing up the AHCS strategic plan, I got a call from Jewish General asking if I could come in so they could adjust my mask. I was delighted to oblige. It turns out that whatever the mask is made of, you can mold it some by making it hot and then cooling it off again. So I lay down on the table, they heated it up, and then I got a hot mask pressed down onto my face. They followed this with cold towels. It might have looked a little like a cross between a spa treatment and waterboarding, but it was fine. The result was a much tighter fit, and I’m delighted to learn that they can do this again should I lose weight–and not just a beard. Though again I was treated to the spectacle of a medical professional advising me not to lose too much weight. I won’t get used to that.

The re-sizing was followed by a trip back into the testing room, where they did another simulation on me. For just a moment, as the x-ray machine passed over my face with the light turned off, I could see my reflection. There I was, strapped to the table, looking out from inside the mask, with my hair in pigtails hanging down either side of the table (Carrie insisted that I be sure to include the pigtails detail). Then the light turned on. I think it’s probably better that way, but I would definitely say that the look is a little more “executioner” and a little less “horror flick” or “lucha libre” than I had originally thought. There was much talking and adjusting, and drawing on the mask and on my body. It took quite awhile but I wasn’t uncomfortable, and the mask sure did fit nicely.

When it ended, I almost got to take a picture of the wall of masks, which is really impressive. I did confirm that the mesh ones were for head and brain patients, and there are also these mysterious white ones. I’m wearing yellow, as you know. But there is, alas, no picture: they changed their mind because of privacy concerns. I keep forgetting that it’s actually kind of weird to be having a completely public bout of cancer.

If that wasn’t enough, a saintly woman named Bridget changed my treatment schedule for me. I still have 7:45 W and Th this week, but otherwise all the times are eminently humane. After wandering around the schedule for a couple weeks, I will settle in at 12:30, which breaks up the day but is well-situated for a trip to the Hope and Cope gym beforehand and if necessary a nap afterward when the radiation fatigue sets in.

I even ran into my radiation oncologist, who doesn’t think there will be any major pain for at least a couple weeks, if not longer. I like the sound of that.

More news after I actually go through one of these tomorrow.

Yesterday was a big medical day.

Good News 1:

First up was an appointment with my endo, who upped my synthroid dose quite significantly–almost doubling it. Let’s hope that handles the hypothyroidism. I expected that. The bigger shock was that he told me my parathyroids were working. My sense was that they were damaged during the second surgery and I would be on calcium pills for the rest of my life. Which was a bummer because I hate the calcium pills. They come in a size appropriate for horses and elephants, and they upset my stomach at inconvenient times (like the middle of the night). So no more calcium pills. Though I guess he could always be wrong. If my lips are numb, I’ll know what’s up.

Good news 2/Bad News (it’s sort of both):

Next up was the “simulation” which is the last step before they start external beam radiation.

And now for a gratuitous Jean Baudrillard quote:

“Medicine and the army […] are favored terrains of simulation.”
— (Simulacra and Simulation)

(We now return you to your blog post)

I went into a room with a bunch of masks on a shelf (sort of like a costume shop, but different). Some looked a bit like mine. Others were mesh (I suspect that’s what the brain cancer people wear). They did a bunch of tests and x-rays. There was much talk about whether the mask was tight enough. So my anxieties are not totally off base. Then they drew some marks on my body and painted over them. it’s not quite tattooing, as I’m sure the stuff will eventually come off but right now it looks like someone painted a trident on my chest.

Now the world will think–erroneously–that I have a thing for Poseidon.

The EBR is supposed to start next week Tuesday afternoon, but I will get a call Monday to confirm that because they are not sure whether to adjust, use or remake my mask. So there might be a delay. I’d rather they take their time and get it right than rush into things. But the real bummer of it is that after Tuesday, they’ve scheduled me for 7:45am every day for six weeks. It was late on Friday so the scheduler had already left, but the nurse got a few of my times changed. I’d asked for an afternoon time–any time. So I will try a range of strategies starting with reason and appeals to human decency to get the time changed to something approaching humane. Failing that, there is always begging. I don’t care if it’s a different time every day, I just don’t want to have to get up before 7am five days a week for six weeks in the summer. If they tell me the 32 people scheduled after me each day have a more important medical reason to have those slots than I do, I am willing to go with it, but somehow I kind of think that’s not the case.

I also met the dietician, which was interesting since her instructions varied a bit from the written instructions I’d gotten.