What I've been up to lately

There’s good news and not-so-good news.

The good news: My latest scans, now a week and a half ago, were good. I hadn’t expected the scans to take place quite so soon – they were scheduled for a date while my latest two-week round of chemotherapy via the pump was ongoing, rather than for somewhere during the two weeks off from chemotherapy that would follow, as had seemed to be the custom. The good thing about moving the scan date up, I thought, was that if the results were bad then we’d have the two weeks off from chemotherapy to use on looking for a new treatment, and perhaps wouldn’t miss any treatment time. The bad thing was that I wondered if the oncologist thought we might in fact need those two weeks off for exactly this purpose.

As it turned out, however, we don’t need to go searching for a new treatment, such as a clinical trial, because the scans showed that the current treatment is continuing to make progress. More specifically, it appears that the various small tumors I have are getting smaller. There is (and perhaps has been all along) one decidedly larger tumor, and this one we were told is more or less stable. But the good news about that one is that it may actually be dying. As the oncologist said, it’s hard to see via the scans, but this was the first time I’d heard this possibility spelled out and treated so seriously. So that was the good news.

The not-so-good news: Teresa and I came home from the very encouraging meeting with the oncologist, and the draining of the remaining chemotherapy from the pump, on Friday, October 20, and for the next five days I experienced quite a lot of discomfort, or – to be more explicit – pain in my abdomen. I had experienced similar difficulties in previous rounds after the draining of the pump, but those had gone away. These didn’t. I wasn’t in a lot of pain but I was in pain (Sloan Kettering uses a 0 to 10 pain scale in which, as a nurse said to us, childbirth is a 10, and the breaking of a major bone is an 8; I was more like a 3), and it was persistent. The oncologist’s nurse felt that this was a form of acid reflux, which apparently the use of the pump – any use, including draining it and injecting inert substances instead, as they’d done with me on October 20 – can cause. But on Wednesday night the pain made it difficult to sleep, and so I reluctantly took a pain pill. (I would have preferred not to, since I went to some effort to wean myself off of pain pills months ago.) The pain pill helped a lot with the pain, but jangled my sleep, and so the next day I called the oncologist’s office to ask if I should change to another pain remedy that might provide similar pain relief with fewer side effects.

In the course of that phone call I described my various symptoms to the oncologist’s nurse. These included one that had no obvious connection to the pain and discomfort I’d been feeling: an instance of – sorry, there’s no more elegant way to put this – black stool. Black stool, as someone at Sloan Kettering said to us, is a red flag, because black is the color that blood takes on after it reacts with stomach acid. In other words, this was a possible symptom of a bleeding ulcer or, it turned out, a variety of other unpleasant things, including pancreatitis. So the nurse consulted the covering physician, and the two of them sent me to the Sloan Kettering emergency room (“Urgent Care”).

At Urgent Care they determined quite quickly that it was very unlikely I had a bleeding ulcer or pancreatitis. Among other reasons for their conclusion was this: it turns out that a common remedy for acid reflux, one that the oncologist’s nurse had recommended, namely Pepto-Bismol, can produce black stools – and I had been using Pepto-Bismol to try to deal with what was supposed to be acid reflux. I also don’t think the Urgent Care folks were all that impressed by the pain I’d had, but they were attentive to the results of the blood tests they ran. I get blood tests every time I go to MSK, and the previous Friday, when the pump was drained, my liver numbers had been fine and nothing else seemed dramatically wrong. But now my liver numbers were not fine, and my impression is that various other numbers were off too.

All of which seems to mean that my liver – that is, the healthy parts of my liver -- finally experienced side effects from the new chemotherapy. I had inflammation of the liver, though by no means terrible inflammation. Looking back, I suspect my liver had been reacting to previous rounds of chemotherapy too, just not as much; I think that’s the true explanation for the post-chemo difficulties I’d been having. The difference is that this time the difficulties were worse – and this time I got blood tests during the time those difficulties were in play, so now there was evidence to show what was going on. (Why did the chemo seem to affect me more after it stopped than while it was actually being infused into my liver? I don’t know. Perhaps it’s just a matter of the passage of time: the chemo doesn’t immediately disappear from the liver when the infusion ends, and the longer it’s there the more impact it probably has. But I wonder whether another factor might be that during the infusions my whole body, and specifically my liver cells, are braced somehow against the chemo’s impact, and that once the infusion stops, everything relaxes and then the impact gets felt.)

Anyway, once the doctors had an idea of what was happening, fortunately they also had a response. They drained my pump again, and this time inserted a mixture of inert substances and a steroid. So over the next week or two my liver will get a slow infusion – about a milliliter a day – of steroids, and this treatment should operate as an anti-inflammatory, as steroids generally do against inflammation. The result may be that my next round of treatment is postponed a bit, until my liver calms down, but hopefully that will be all.

So, in short, with a pause for the anti-inflammatories to work, I should soon be able to continue on the treatment which the scans a week and a half ago showed was working.

Of course, sorting all this out required a stay in Urgent Care from about 7:30 PM Thursday to 3 AM Friday, when I was admitted to the MSK hospital, and then I was a hospital patient for about 39 frustrating hours, from 3 AM Friday till about 6 PM Saturday. More on those 39 hours, perhaps, in another post.