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.
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onto my faculty photo is available here: http://superbon.net/?p=1286 (note that the news in the accompanying post is out of date).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.
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.