There’s some bloggable backstory here. For instance, today I saw a videotape of the inside of my throat. My right vocal cord remained paralyzed but the left one moved all the way over to compensate. Also, it turns out that the insides of people’s throats look an awful lot like meat. But here’s the update, and I will write more soon.
———–
Dear Friends Near and Far,
Welcome to another exciting installment of Cancer Update, which I am both the subject of the news and its author.
HEADLINES: surgery is back on again, for the 12th of February. As always, there is a chance that the surgery date will be changed, but if it is changed, it will probably be the 19th of February. So no Mexico vacation for me but if the drugs are good enough, I won’t care. Once we know how the surgery goes, I will be scheduled in for various radioactive treatments. There are some serious-but-not-mortal risks to the surgery but the risks for doing nothing are higher, so I am as certain as I can be about the decision.
You can stop reading here, but as always the gory details are included for the curious (and to spare me the trouble of repeating them in a lot of separate emails). Apologies for droning on.
THE LONG VERSION:
When we last left off, my surgery had been suspended and I’d been referred for a 3rd opinion. Thanks to some help from a doctor friend here, I got in for a “clinic” pretty quickly at Montreal General. It consisted of a senior endocrinologist (who also acts as an oncologist–he trained my endo), a senior surgeon who is very well respected in these parts, and a med student. They went over my case in great detail and discussed my various options. It turns out that the non-surgical option is not really an option. Given the size of my thyroid and the probable size of my tumor, they would have to give me enough radioactive iodine to kill me in order to kill it. Even with the highest tolerable dose, followed by external beam radiation, they would not get rid of it. It would then likely grow back and surgery might be necessary a few years down the road. Except that a later surgery would be much more difficult and dangerous because of all the burnt tissue inside of me. Worse yet, there is no real evidence-based medicine for a non-surgical option in my case, so we would more or less be flailing around in the dark. They were both very clear that they would recommend surgery to me even with the risks, and that they themselves would choose that path if they were in my place.
One other nice outcome besides a clear path forward is that the consulting surgeon volunteered to be present for my surgery, so I will now have two surgeons instead of one. They will also have various gadgets in place to minimize the risks, and the surgery will take place at Montreal General instead of Jewish General. I guess I’m on a tour now; at least I am collecting cards and proliferating dossiers around Montreal hospitals. The surgery will begin with an all-forces effort to locate and protect my left vocal nerve.
That said, there are still serious risks to the surgery. Because I have only one vocal nerve left, if the second one is damaged or wrapped in cancer, I will have to have a tracheostomy. A trach will not be particularly fun, but is certainly a livable disability. The odds I’ve been given are between 1% and 10% of having to have it, but of course I’m a person, not a population so it’ll either be 0% or 100% when I wake up in the recovery room. I guess the inbetween is if they have to do a temporary trach, which could also happen if the nerve is stunned. Last time, there was some risk of the unfortunately-named “Sternal Split”, and there’s still a very small chance of that, but it’s basically more pain in the short term if they need to dig in a bit to protect my nerve. There’s a long menu of other, weirder risks (such as inability to smile on one side of my face or to lift one of my arms above my head) but as I’ve said from the beginning, it’s likely I’ll get one out of a bunch of possible outcomes, and so I will deal with whatever happens when it happens. I told the surgeons to save the nerve if they can, but if they can’t, then I don’t want clean margins in my neck, I want clean highways in there. If they can save the nerve, they may leave in a little bit of thyroid to be taken out with radioactive iodine. I’m fine with that, too. The condition of my voice after the surgery is a big question mark. If they can save the nerve, it is likely that it will at least return to the condition it’s in now. If they can’t, I’ve heard some pretty divergent things about speech with a tracheostomy. The surgeons seem confident, but a laryngologist I met with today was considerably less reassuring (her answers were a lot of “it depends”).
GOOD NEWS DEPARTMENT:
In the meantime, my voice continues to improve in plateaus. Last Monday I woke up and sounded like “me” (at least in my head) for the first time since November. My voice is still much quieter than it used to be, but the quality is so good that when I saw my surgeon last week he scoped me to see if my right vocal nerve had started working again. My right vocal cord is still paralyzed, but my left vocal cord has compensated nicely. On the telephone people almost can’t tell anything’s wrong, though it’s still harder for me to talk on the phone than in person. Also, I saw another surgeon today who’s been tracking my lungs. He went over the PET scan and there are no clear signs of malignancy outside of my thyroid, though we’ll do another PET scan in 4 months to be certain. If the Quebec healthcare system wants to spend the money on me, I’m happy to oblige.
I have been sneaking into work a little bit, but I’ve been unable to do much of my own writing. That part of my brain seems to be preoccupied and/or diverted to anxiety management. At least the musical part of my brain seems totally uninhibited by the goings on elsewhere in my head.
I will write again if there’s a big update or a change of date for the surgery. Otherwise, the next message you get will likely be post-surgery.
Best to you all, and as always, more news as it happens.
Sincerely,
–Jonathan
I’ll be keeping you close in my thoughts and prayers as you go through this.
My mother had a tracheostomy years ago (for a very different kind of cancer). It was the 80s and the surgery was brand-new, and she had damage from radiation to fight a previous bout with cancer (exacerbated by the fact that she didn’t stop smoking after that).
Anyway, that’s a long explanation to go along with the fact that she could speak after her tracheostomy. Not immediately, but with determination, she made it happen and could even be understood on the phone. At that point, the doctor’s said it shouldn’t be possible, but they were wrong. She took great pleasure in telling them that, as well.
*hugs*
We’re all thinking of you. I haven’t met you, but we have so many friends in common, and I know they are all eager to see this turn out well (as am I, as we know you are!).
Thank you for the updates here. I am amazed and encouraged to hear of the resiliency of your left vocal cord. Chris and I will be thinking of you and hoping everything goes well on Feb. 12.