Playing Asteroids with my Neck

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.

Speaker Voice Phenomenology, or “Just Another Asshole with a Bluetooth Headset”

One of the non-loaner headsets arrived last week. It is shockingly overpriced for what it is, and the amp has the hilarious name “Spokeman” which must be a mistranslation of either “Speakman” (as in “Walkman”) or “Spokesman.” You choose a headset to go with it and as I have a rather large head (hence outside the “one size fits all” range), I chose the most flexible one that could be worn over the top of my head, around the neck, or around the back of the head. It turns out the latter is the best for comfort, which means the mic sort of reaches around the corner of my mouth (that’s the big picture in the diagram):

The speaker hangs around my neck on a lanyard. It’s big and clunky, but so am I, and so that allows me to rock the chunky jewelry in this case. Although not by any means perfect, the system works way better than the loaner. We tried it for a couple short social events, and then yesterday the big test was a trip out to the Musée de beaux-arts, to see the incredibly commercial Tiffany exhibit. (What can I say? Glass is cool.)

As everyone knows but nobody reflects upon much, different compensations for different disabilities carry different levels of stigma with them. Eyeglasses are one thing, a cane is another, crutches are another, an artificial limb another, and so forth. A guy in a restaurant with a handheld mic gets a look from everyone walking in the door. The loaner stood out. But a head mounted mic actually appears to stand out less, at least in a crowd. So my flip assessment after one trip to a loud public place is that people are so used to other people walking around with extra equipment on their heads (earpieces, mics, headphones) that a guy walking around a museum with a head-mounted mic and speaker around his neck is just another random thing you see in a crowd and therefore not of much interest.

As to the sound, I’d call it tinny, but the truth is that I don’t hear it that well. The speaker projects out from my chest and is fairly directional. It allows me to speak quietly and be heard–which is the point–but it means I have to get used to not hearing myself and trusting the prosthesis. One of the reasons you sound so weird to yourself when you hear your own voicemail message (for instance) is that your normal perception of your voice has a bunch of bone conduction in it. You’re hearing it through your ears and through the bones in your head. I’m hearing my voice through neither, and the people around me hear it through a speaker.

I don’t know if this will be a permanent thing–probably not. But it will allow me to go out in public and/or operate vocally in groups of people while my voice continues to recover. My voice is finally showing some improvement over the last week (and speech therapy was much better), which is good news, though it is still slow going. It gets better in plateaus, rather than incrementally, so I have to just sort of wait to wake up with a new voice one day. That finally happened this week for the first time (this is how the recovery went after the first surgery so I am fairly confident that it will proceed in the same fashion again). The thing is, no matter how much better it gets, there will be another round of decline with the external beam radiation, but that’s such a giant can of worms that it must wait for another post.

Confession

I posted the following note in our building’s basement garage this afternoon after sweeping up some plaster.

Cher Neighbors:

You may notice the new hole in the wall. If you happen to walk by our car on the street, you may notice the right side-view mirror hanging off the side of the car.

Yes, there is a connection between the two.

Rest assured we will pay for the repairs to the wall (it shouldn’t come out of the common fund) and we will purchase a smaller car when we return from California in the spring of 2011 (which will hopefully reduce the number of occasions we have to apologize for damage to the garage).

Sincerely,
–Jonathan (for App #2)

I haven’t had a dizzy spell since Saturday, so I decided (after consulting with Carrie) to take the car for a spin. I had a little retail therapy in mind for the afternoon and wanted to pick up some more onion bagels from Fairmount, as they are one of the breakfast foods that taste more or less like how I remember it tasting. The thing is, our car is this hulking Dodge Intrepid we bought in Pittsburgh in 2000, and our garage isn’t really designed for such a big car. We’ve scraped both back doors turning the corner to come in from the alley, and there’s a whole set of “tricks” to getting up the incline to the exit and backing out. When we return from sabbatical, we intend to purchase a smaller car, as this one was always on a 10-year plan. But today, I didn’t even make it out of the garage without screwing up. The passenger side mirror is now hanging by its cable and there’s a big hole in the plaster.

Was it an error in judgment after not driving at all for 6 weeks? Is my sense of distance off? Is it that it’s harder to turn my neck to the right? As with everything else that’s part of recovery, nothing is simply explainable by a single factor. (Both of us have come close to doing that before, so it’s theoretically an error I could have made pre-cancer.) Still, when I called Carrie to tell her the news, she said something like “how about I keep driving for awhile?” I think I’ll let her.

In case you’re wondering, once out of the garage, I successfully navigated my way around and did pick up the bagels. I had no success on the retail therapy end but that’s how it goes sometimes. I don’t think I was otherwise a threat to public safety, and I don’t really use the passenger side view mirror anyway, so I hardly noticed it. . . .

Hope and Cope Retraction

My public apologies to Hope & Cope. The intake forms were a little repetitive and I had to write in a few things as thyroid cancer isn’t really a category for them. But that’s as far as my criticism can go. My intake interview was done by a retired teacher named Gwen who volunteers there and is a 25-year ovarian cancer survivor who must now be in her 70s. The word “badass” comes to mind although I’m pretty sure that’s not how she would describe herself. Also she regaled me with stories about how rough McGill was for Jews when she was an undergrad. I have gotten a weird feeling the few times I’ve been in posh downtown clubs at dinners for donors. Every time I go into a place like the University Club, I wonder how far back into the past I’d have to go in order to not be allowed in the door, and I fear it’s not all that far.

Anyway, my personal trainer seems pretty great. My routine is, well, harder than it looks. The words “stiff” and “incredibly out of shape” come to mind. But she clearly knows what she’s doing, which is what I wanted.

I can’t return the cancer, so I might as well enjoy the fringe benefits, right?

The Loaner

My recovery this week has descended into the “slow slog” part. The good news is that I’ve avoided (so far) any sign of the crushing depression that’s been promised me (oh, there’s still time) but the bad news is that my voice seems to have gotten a little worse. I was warned that this might happen with the radioactive iodine, and probably the steroids took a few days to get out of my system and once they were gone some swelling returned to boot. I am starting to want to go back into work but the mechanics are simply impossible. Merely entering the Arts building would require to talk more than I am physically capable of doing right now. I am also refusing to talk on the phone at this point as the phone is particularly hard on my voice.

I had a killer speech therapy session on Wednesday, in the sense of “difficult” and “exhausting.” Speech therapy is a cross between physical therapy (moving stuff around) and singing lessons, more or less. It’s pretty fun, but there was a lot of trial and error. My speech therapist suspects that my trachea still isn’t fully closed and was actually able to make me make myself dizzy doing certain exercises — which we promptly stopped — but that suggests there is still a leak somewhere in the system. Also, my voice is still weak enough that talking at normal volume for me is sort of like yelling at full volume for you. Now imagine trying to have a normal conversation for an hour or two.

Thus, while I’m not depressed, you could call me impatient and slightly frustrated. I am lucid enough and energetic enough to take visitors, but I can’t really do a whole lot of socializing yet because the temptation to talk is too great and too taxing over time. So clearly I need a technological solution. I need a cane for my voice.

I spent time Thursday and Friday researching portable voice amplifiers, and next week one and possibly two may arrive for me to try out. They universally look lame, but they do seem to work work. I know this because my speech therapist kindly lent me a “loaner.” It’s reminiscent of the kind of “loaner” you get when a car dealer fixes your car and has to wait a week for a part–not the nicest unit on the lot, but it works.

Both the mic and the speaker are over 25 years old as far as I can tell. Radio Shack no longer exists in Canada and while “The Source” has countless things into which you can plug your iPod, there are no electronics nerd amplifiers like this for sale anymore. Which leaves me in considerably more pricey medical supplies markets. Anyway, the voice amp does really help, though I have to watch out for feedback. Friday night I was able to go out to dinner with friends, and while I was considerably less loquacious than I might be under better circumstances (pick up the mic to talk), I was able to make myself heard while more or less speaking at whisper volume. Of course I look like some dork televangelist sitting at a table with a mic and speaker, but I could make myself heard and participate in real time, as opposed to writing notes, which has been established as inferior. The units I ordered come with head or neck-mounted mics (you could use a lapel mic but since I want the speaker near my chest, the opportunities for feedback are too great) so I’ll look more like a call center worker and less like a televangelist. For a pretty penny, I can upgrade to one of the slightly more discreet mics that broadway actors use. Yes, I might seriously consider doing that if this is going to be a long term thing.

I should note that while whisper volume is my normal voice volume right now, I am not in fact whispering. Yet I noticed this winter when my voice was in similar shape that people would whisper back at me. Which it turns out is super annoying because they probably aren’t consciously doing it–it’s that thing where people raise or drop their voices to match your levels (useful knowledge if you ever want to diffuse an escalating conflict: speak more quietly and flatly). But I don’t want to be whispered to. I kind of feel like I’m being addressed like a child. Which is not really how I want to be addressed.

—-

In other news, M introduced me to the Hope&Cope Wellness Centre, where for the price of a possibly slightly demeaning intake interview you can get a free personal trainer and access to a surprisingly beautiful building about a block away from the Jewish General Hospital. The mean age of the clientele is closer to that of my mom than me, but it still has a certain appeal. All you need for access is to have cancer and to go through the interview–which I’ll do next week. I figure I’ll take all the perks I can get.

Friday was the Whole Body Scan–no news on that for a few weeks, probably. Easiest scan yet, though, and the I was grateful that the tech was thorough enough to do my neck twice just to be sure he got it.

USA Today ran a story on radioactive iodine treatment. The actual issues regarding decay of isotopes are not subject to interpretation or debate, but different organizations are setting different regulations and because it is radiation everybody freaks out and reverts to superstition. As a former radiation safety officer put it on the Thyroid Cancer Canada list, the “cooling off” period for radioactive iodine leaving the body is like the cooling off period for taking a pie out of the oven. If you know the composition of the pie, the temperature of the oven and the temperature of the room, then you know how long it will take to cool off. If it’s an hour, you can wait 3 hours but you don’t get any added benefit beyond peace of mind by doing so. That said, from the algorithms provided by said radiation safety officer, I don’t think I’d send someone with a high RAI dose to a hotel right after dosing, especially given cleaning standards in hotels. But I am no longer a public threat, even though I may set off alarms at the border for awhile.

Beep

In Sunday’s forthcoming NY Times. I can’t talk much (or really at all on the phone) but I can answer questions over email. The conversation was considerably longer than the quote, of course, but I am interested in the idea of the web as a more or less silent medium that is punctuated by sound. All this technological innovation and it turns out the sound part is still pretty annoying. If you don’t believe me, try turning on all the sonic prompts in Microsoft Office and see if you get any work done.