Medical Journal: 8/9/18

Mostly good news.

Dr. Sanfilippo, the radiation oncologist, looked at my radiation history. I had a cumulative dose of only 25 gray of radiation (that’s 2500 rads, if you’re old-fashioned), which he considered modest. No need to spread out the treatment series to reduce side-effects. Yesterday they made the mask I’ll be wearing for the treatments; it looks like a cross between a fencing mask and a death-mask from a medieval tomb sculpture. Also got a tiny tattoo mark so they can aim the beam; remind me never to get an actual tattoo.

Treatments start a week from Monday and run five days a week for a total of 28 sessions, so into late September. Met with the nutritionist who works with the radiation folks; she wanted to make sure I got lots of different nutrients and at least 80gm./day of protein. She had a different theory than Dr. Bomback, the nephrologist; she thinks that to the kidneys all proteins are equally burdensome, while he specified red meat, shellfish, and poutry as much more work for the kidneys than other protein sources. (The fact that different medical experts, especially in different fields, can’t agree on reasonably basic questions, and that there’s no strong drive to resolve those disagreements experimentally, is something I got used to the last time I went through this.) Also met with a skin-care nurse who told me all the things I needed to do and not do to prevent skin problems at the radiation site. Not too burdensome.

This morning I saw Dr. Sulica, the ENT surgeon. Given that there was some risk that the tumor couldn’t be excised surgically because of its positioning, he agreed with the view I had already formed that, even without the heart issue, it looked like a better bet overall. He’s not entirely confident that killing the tumor will cure the cough, but that’s an inconvenience rather than a real problem. He scoped the throat again and reports that the tumor still looks well-contained “not at all likely to be a bad actor.” Perhaps unsurprisingly, Dr. Sulica is somewhat less sanguine about radiation side-effects than the radiation oncologists are; he thinks there is some risk of damage to the voice. He pointed out that most of the bad stuff happens months or years after the radiation treatment, so the radiation folks never see the damage and continue to think they aren’t doing any. For example –and this was complete news to me –he thinks it very likely that the heart problem is a side-effect of the previous set of radiation treatments; apparently that’s now a known risk, though it may not have been in 2000. On the other hand, interventional radiology has gotten more precise, he said, “less like a sledge-hammer.” On the other hand, all of the risks are fairly low probability, and most of them arrive only with some delay. So, all things considered, radiation seems like the better course.

Dr. Sulica agreed with my observation that it’s strange that that expensive piece of radiation equipment works the day shift weekdays only. It would be much less disruptive to my life if I could get some of my treatment evenings and weekends. He pointed out something I hadn’t considered, which is that in addition to the economic question there’s a clinical question. “Tumor biology must be highly unusual if it respects not only weekends but holidays.” I’d assumed the idea was to spread out the dose to minimize side-effects, but apparently there isn’t any actual science supporting the idea of five-day-a-week treatment as opposed to seven days. The first time I heard the phrase “evidence-base medicine” I wondered what other sort of medicine there might be; now I understand that many of the healing rituals of our tribe are based on folk-wisdom rather than anything resembling science.

One advantage of radiation over surgery is that I don’t have to hurry about getting the cardiac issue diagnosed and treated, because I don’t need to be cleared for anaesthesia in the short run. Of course it has to be dealt with eventually, if only because I’ll need a strong enough heart to handle a general anaesthetic for the kidney transplant. A nephrologist friend I talked to suggested a couple of options for doing cardiac catheterization with little or no contrast, which in the best case would mean no additional kidney damage at all, and wouldn’t involve starting on dialysis before the catheterization (and then being committed to dialysis from then on). I’m going to ask Dr. Weiss, the internist, to find a cardiologist willing to take that approach. Still cheerful and –to all appearances –healthy.It’s terminally weird to be dealing with all this heavy-duty medical stuff without actually feeling sick, but for now I’d rather have the weirdness than the symptoms.