Cancer Crawl, 13 March

This is the email I sent out to my distribution list today. Now, for a high-iodine lunch!

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Dear Friends and Colleagues,

Here’s the latest cancer update. For those of you following the blog (http://superbon.net – I’m on a roll) the RAI news immediately below the headlines is old news.

HEADLINES: I was really radioactive, now I’m only a little radioactive. I was in the hospital for 48 hours (for safety and isolation purposes, not because anything was wrong) but now I’m home and recovering. We’re on a wait-and-see with the next steps. My voice is starting to recover a little. I feel surprisingly good but it might be steroids so we’ll see how I am in a few days when I’m off them. So for the next week I am laying low and not doing too much of anything while I try and get a sense of where my body really is at. But I am really ecstatic to be home.

Details for those who want them. As usual, apologies for the long rambling email but I didn’t have time to write you a short one.

Radioactive iodine treatment:

Yesterday I arrived home from the hospital, again, after completing my radioactive iodine treatment. Checking out is almost a routine now, though if I’m lucky I won’t have to spend an overnight at a hospital for a good long time. For “normal” thyroid cancer patients (which I am not), RAI happens after the removal of the thyroid to clean up and kill off any remaining thyroid cells in the body, so that the thyroid cancer can’t come back or develop. Although there are years of followup afterward, for those “normal” patients, RAI is the last step in the acute phase of treatment. For me, it will likely be the 2nd of 3 steps.

Wednesday morning I checked into Montreal Jewish General, and I received two pills containing 175mcg of radioactive iodine around 1:30pm (that’s a very large dose for one sitting). The resident checked me out with a Geiger counter and then ran out of the room. I spent the next two days in isolation. The nurses contacted me by phone or by yelling through the door, and if I needed anything, they left it out on a table right outside my door and then ran away while I reached out for it. Anything that came into my room stayed there for the full 48 hours I was in isolation. But it was not really isolation . I rigged up a somewhat elaborate system so I could use my laptop and have an internet connection and yet not contaminate my laptop or my iPhone. Which was great, because even though I had a phone to talk on, my voice wasn’t good enough for real phone conversation. I blogged prolifically, and many people sent me long emails or even shorter ones (which I’d asked for), including some who were a total surprise. The nursing staff was great and solicitous, as was my endocrinologist, and the room was “nice” by Quebec standards, which means comfortable and sunny. Friday, the resident came back, scanned me, said I was good to go, and gave me a list of restrictions, the most serious for 3 days (no sleeping in the same bed as Carrie, use all my own towels and dishes, don’t prepare food for others, don’t be around pregnant women, don’t go out in public since I “never know who’s pregnant,” etc.) and then a few other minor things to do that continue for a week or two. The radioactive iodine dries you out, upsets your stomach and can do all sorts of other things to you. My side effects have been (thus far) blissfully mild. I feel like I finally caught a break. I have the dry mouth and eyes, and my voice got worse, and I notice that my taste is slightly diminished (though thankfully nothing tastes wrong or weird as can sometimes happen). Maybe there was some fatigue too the first couple days and I got nauseous once but brought in Gravol for that eventuality, and that handled it. All of these should be temporary. They also gave me a short course of steroid (prednisone) to prevent inflammation of my one vocal nerve. That may be having bigger side effects as I’ve been feeling a little manic or euphoric. Or maybe it’s the synthroid is kicking in, or maybe I’m finally starting to feel better after a month of hell. It’s hard to say, really. Every day feels like some post-hippie experiment with my body, but it’s never boring. They say depression can set in post-surgery, post-RAI and upon withdrawal from steroids (my course is only for 5 days) so next week I may be sulking like Marvin the Depressed Robot and playing old Bauhaus records. But I will force myself to get out of the apartment a little bit and do some activities to keep myself occupied and not excessively focused on being a cancer patient.

Pathology:

The remainder of my thyroid that was removed had “only” a 2.5cm tumor (which is closer to the normal range) with no necrosis and no calcification. Of 38 lymph nodes removed on the right side of my neck, only 4 had cancer. Lest you think my surgeon went nuts, we had a discussion before the 2nd surgery where I told him to be extremely aggressive on the side where I’d lost my vocal nerve (and the same on the other side if I had lost my other vocal nerve, which I didn’t, and so he was more careful). So he was, and I’m totally pleased about it. Although keeping the scar on my neck out of the sun for the next year is a tall order. I don’t see wearing turtlenecks on the beach. Will have to figure something out.

What’s Next:

Lots of followup and tests. I’ve had blood tests, and more will be done in a month. I have a whole body scan next week and will get the results a few weeks after that. A week from Tuesday I have an appointment with a radiation oncologist because I may well be having external beam radiation as the “final” step in this round of treatment. We’ve also got to figure out my correct hormone levels with medication now that I don’t have a thyroid.

External Beam Radiation:

My case was heard last Wednesday at “tumor board” and it seems there’s some consensus that I should have external beam radiation but not regarding some of the finer details including when. I’ll know more after my radiation oncology appointment on the 23rd. There are some serious downsides to EBR, but there are also downsides to another surgery in 5, 10, or 25 years. Statistically, my odds of needing another surgery in 10 years are a whopping 33%, which are not odds I like, so I will be keen to hear how the EBR affects that, versus the downsides (like the increase risks of other cancers near my neck). Neither surgeon ever wants to have to operate on my neck again, and I share their reluctance, so this will be a big factor for me. That said, EBR is extremely rare for thyroid cancer, and while I’ve found a few people who’s had it, the “survivor pool” is considerably smaller so the collective wisdom is thinner.

Endgame:

Just to be clear, there is no “cure” for thyroid cancer. It doesn’t kill you but it can keep coming back because it’s so hard to kill off all the tiny cells that may have become cancerous. So in a sense it’s a good thing that it’s a chronic condition because it’s not fatal, but untreated it can turn into something fatal (as it almost did with me) and certainly the treatments themselves can lead to other complications. It is not unheard of for thyroid cancer patients to have multiple surgeries or multiple courses of radioactive iodine, sometimes close together, sometimes years apart or more. But I probably won’t be sending out these updates forever. Things are acute now and I’m getting lots of questions. But I’m through the “normal” parts of the treatment and most of the major things that could go haywire already have or haven’t, so I’m definitely over the big hump on the roller coaster. They do say it takes the body a full year to recover from surgery and I’ve had 3 (plus the RAI now) so I’m expecting a slow climb to normality, which will be aided by my sabbatical and at some point briefly punctured by EBR if I go that route.

That’s it for now. I’m feeling surprisingly good, but that may change in a few days. I still don’t have a clear timeframe on a return to work but I am itching to return to a normal life (external beam radiation will eat 1-2 months of that somewhere down the road if I do it but it could be as long as a year from now–not because of “wait times” but because of the specifics of my case and that I want to spend 9 months of my sabbatical in California, where I won’t be undergoing major treatments). Already my voice is improved today over yesterday. Sometimes I can make the vocal cords hit one another and then my voice sounds like my voice, sort of. But it’s still hard work. It took me weeks to get to this point after the first surgery, so I’m optimistic about where this is all headed.

As always, thanks for your support and keep in touch.

Sincerely,
–Jonathan