Some treatment surprises

My recovery from the radiation treatment is still a work in progress. It seems to be, fundamentally, a work that really is progressing – earlier this week Teresa and I reviewed the newest CT scan report and learned that it appears to show that my tumors are by and large stable or smaller. This particular scan was done because of my recovery side effects, and actually is premature in terms of assessing the true impact of the radiation on the tumors, so there is still plenty of room to hope – as I do – that more improvement in the tumors themselves will show up on the final scan.

That said, matters have also been more surprising than I’d anticipated. I have a lot of not very startling side effects, but cumulatively they are a bit of a burden. For example, as I’ve mentioned already, I’m tired, sometimes so tired that nothing but an afternoon nap can restore me. I’m also not sleeping very well, and that may have something to do with the fatigue and also with another symptom: persistent leg cramping that I’ve been experiencing, and that so far Sloan Kettering really can’t explain. (Lack of magnesium causes cramping but I don’t appear to be low on magnesium.) As usual, I have any number of drugs to take to make sure my digestion keeps functioning smoothly; these address all aspects of my digestion, from “stool softening” to water loss, and I suspect that to some extent they all complicate each other’s operation.

But the most startling events took place on Saturday night, August 25. That night I went out for a walk. As I walked, however, I noticed that I had begun tilting – literally, physically, tilting – to the right. I also began to feel more indigestion. By the time I had done most of my walk, and gotten within two blocks of our house, I felt I couldn’t continue on, and Teresa had to come and pick me up. Even getting in the car wasn’t easy. (A nice woman living at the corner where I’d come to a stop got me water to drink; fortunately, the next evening I felt easily well enough to stop by her house to say thanks.)

What was going on? One possibility is that I was simply feeling suddenly and intensely off kilter digestively; that would make sense because I had just recently started taking another drug, lactulose, which I’d been told could give me diarrhea.

The second possibility is connected to the first: I was taking this new drug because the level of ammonia in my brain had risen beyond its acceptable levels, though not far beyond them. Ammonia can cause things like difficulty walking, and I hadn’t yet had a chance to get the extra ammonia out of my system with the new medication. Possibly I also had some degree of “chemo brain,” a term I don’t like but that I’m afraid has real physical content, and must be included on a list of potential, physical (not just psychosomatic) side effects of cancer treatment. Of course it was scary to think that I had ammonia or anything else in my brain, where it’s not supposed to be, and where besides impairing my walking it may also have impaired my focus and cognitive functioning. Presumably it got there as another side-effect of the radiation treatment. But in any case I’m relieved to be able to say that I am feeling far better now.

That in turn fits with the third possibility, which is that somehow momentum began to run against me; that I wasn’t really in such bad shape but had gotten into a pattern that I couldn’t readily shake. This idea, I admit, is hard to explain, but that’s at least partly because what happened to me on Saturday night is hard to figure out too. So, perhaps, I somehow fell into a pattern in which I couldn’t walk without tilting. Maybe I had bruised my hip? I didn’t know how to bring myself out of it, but 12 hours after Teresa had taken me home, I felt better. So if there was a pattern, it’s now been shaken. I still feel a bit stirred, but otherwise okay. (That’s a joke, dear readers: James Bond wanted his drinks shaken but not stirred.)

This was, all in all, somewhat more reality than I actually wanted. Fortunately it seems to have been an incident, of somewhat unexplained origin, rather than a transition to a new stage altogether. So I am focusing now on resuming my walking – not so easy in a heat wave – and continuing final work on my book – which is coming along, step by step, but there are still a lot of steps to be taken – and in general keeping my various drugs, and their side effects, under control. Thanks to the dedicated staff at Sloan Kettering for all their help in these efforts.

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I want to add to this piece my condolences to James Grimmelmann, a former member of the New York Law School faculty, for the death of his mother, Jan Lewis. I did not know James’ mother well, but I knew that she consistently supported my wife and me over the years of my illness; Teresa knew Professor Lewis from Rutgers, where Professor Lewis taught for many years and built an outstanding record of thoughtful achievement. Teresa and I were both shocked to learn the recent news that Professor Lewis died at Memorial Sloan Kettering, after a fight against what must have been a sudden, fierce attack of cancer. We are thinking of her and of her family at this sad time.

An update

Some of you may be wondering what’s up with me, and I don’t want to leave you in suspense – though the answer is that not much is actually going on.

It’s now three weeks since my radiation treatment ended. In about a month I’ll have a CT scan and a PET scan, and then they’ll know what the treatment has accomplished. Why the delay? I believe I’m in the process of waiting for my liver to settle down enough from the impact of the treatment so that the doctors can tell what’s really going on. In the meantime, again, nothing very dramatic is happening.

One thing that is interesting is that I’m still having side-effects. “Still” isn’t quite the right word; I think my side effects – though pretty modest – have increased over the weeks since the end of the treatment. This doesn’t seem to be unexpected. Radiation is a blow to the body, and its effects, and the body’s reaction to them, apparently quite often only emerge over time. Probably my side effects were also somewhat increased by the chemotherapy I had every day along with the radiation; if so, that too should tail off since the chemotherapy ended the same day as the radiation did.

So I’m more tired than I used to be, and more prone to getting out of breath; all of this is fatigue, evidently, and according to the patient education brochure MSK gave us when this began, fatigue “can last for several months.” I also have a patch of irritated and itchy skin on my back. I never did quite figure out whether the radiation was all going into me from my stomach side, or whether as the machine’s components whirled around me it was giving me doses of radiation from underneath, through my back, as well. Either way, something about this process has disagreed with my back. Skin issues, MSK told us, “often take… 3 to 4 weeks” to resolve. And my bloodwork is off in various ways, most clearly with respect to my platelets, which promote blood clotting. Mine are well below normal. That means I bruise easily, and as a result I have various purple spots here and there; my body is more colorful than usual! Meanwhile, of course, one should never forget one’s bowel regimen; mine continues.

All that said, I’m basically fine. I’m receiving no treatment right now (except a steroid via my pump, since my liver seems to appreciate a steroid infusion), It’s a little surprising not to be getting treatment, but it will be great if it turns out that I don’t need any treatment for some time to come.