Did I say “boring”? Well ….
1. The X-ray taken the same time the bad blood test was taken showed fluid accumulation in the right lung, with the lung itself partially collapsed. That may explain the lack of exercise tolerance. (And would be a more favorable explanation than worsening heart disease.) Next step is a CT scan tomorrow. Step after that is having the fluid removed with a needle (a procedure than can be done under local) and the lung re-inflated (not sure how that works or how stressful it will be).
2. Still not word from the Columbia lab about their screw-up.
3. A funny thing happened to me on the way to the transplant. The colonoscopy report was fine, though I’m having a devil of a time getting it transmitted to the transplant team; the various physicians’ offices seem incapable of communicating with one another except through me, and the full report with the biopsy results (seven adenomatous sessile polyps, largest 12mm, the rest all under 8mm, none cancerous) was sent to me by snail-mail. Since I don’t have a fax machine,Dr. Sulica’s office was good enough to fax it to Nikki Lawson, the transplant co-ordinator, this afternoon, but as of 6pm she report that she hasn’t seen it.
But that’s just an annoyance. The problem is that the report from the radiation oncologist –which I’d been told would be “He had a completely curable cancer and we gave him the definitive treatment for it” –turned out to be more complicated, and less encouraging, than that. The recurrence risk for the cancer I had (a squamous cell carcinoma of the glottis) is about 6-8%. (All I’d been told was “less than 10%.”) That doesn’t sound so bad. But what I didn’t know is that the consequences of recurrence would be very bad indeed. I’ve already maxed out on radiation, and the paralyzed vocal fold means that the only surgical option would be a complete laryngectomy, with a mortality risk of about 30%. And of course even if it worked I’d have no voice box left. Apparently there’s a way to redirect the breath to give me some simulacrum of a voice, but the whole thing sounds pretty damned grim.
The good news is that we’re now almost 6 months out from the radiation treatment, so about half of that 6-8% risk should be behind me. In addition, Dr. Sulica, who examined me today, reports that the tumor site looks entirely clean and that the residual radiation damage is less than might have been expected; both of those findings seem to him like favorable prognostics. In any case, I’ve faced worse odds of worse outcomes before.
The bad news is that the 6-8% figure doesn’t allow for any additional risk due to immunosuppression. How big is that risk? No one has a clue. My cancer was non-standard (most people who get it are smokers, while mine is probably the side-effect of the radiation I had twenty years ago), and the combination of this particular cancer caused by radiation with kidney failure is sufficiently rare that there’s simply no relevant research. (“The n would be very small,” said Dr. Sulica.)
So that leaves the transplant team guessing. They can wait until the recurrence risk goes down even more, but then I’m likely to need dialysis before they can do the transplant, which substantially worsens transplant outcomes. (I’d also have fairly debilitating heart disease in the meantime, because the kidney problem means that I can only get about half the indicated dose of the heart medication.In addition, my sister’s life is on hold until she knows whether and when she’s flying to New York and being out of action for at least a week.) Or they can choose to roll the dice.
I’m pretty sure I know what I want them to do, but I don’t have a clue about what they’re actually going to do.(Except that Dr. Montgomery, the one time I met him, boasted about how aggressive he is in doing transplants others shy away from.) Apparently the whole thing is run on the principles of a firing squad, to make sure no individual feels responsible for anything. The decision is made at a meeting of 10 M.D.’s (five transplant surgeons and five medical nephrologists). The meeting happens Thursday, and I’m promised results as soon as it’s over. You’ll know when I know.