The benefits of waiting

Two weeks ago, on December 1, 2017, Teresa and I went in to Memorial Sloan Kettering for what we’d hoped would be the resumption of my chemotherapy. I hadn’t had any actual treatment since October 20, because my blood work had revealed that my liver was inflamed, presumably a reaction to the chemotherapy itself. I’d had very good luck up until then in avoiding the “toxicity” that chemotherapy can cause, but once it arrived it had to be dealt with. From October 20 on, therefore, the treatment I had been receiving was not chemotherapy but a steroid, infused into my liver via the same intrahepatic pump that had been the vehicle for the chemotherapy.

Anyway, we arrived on December 1 and learned that Sloan Kettering had already decided to continue the steroid treatment for another two weeks. We didn’t actually see the oncologist (who may have been out of town); instead, the nurse practitioner who works with the oncologist told us what the plan was. In fact she told us that I’d be getting only steroids before the results of that morning’s blood work were even available. That meant it was possible that I’d be getting more steroids for a liver inflammation that the blood work would show was no longer perceptible. But that wasn’t what the blood work showed when the test results came in a few minutes later; it appeared from the tests that my liver, though much better than it had been on October 20, was still in somewhat shaky condition. So – two more weeks of steroid. The one bright point was that the steroid dose was being somewhat reduced, to start the process of gradually taking me off of it.

Even though this all made sense, it was also worrying. By my next appointment, scheduled for yesterday, December 15, I would have been without chemotherapy for 8 full weeks. That, we thought, couldn’t be good as far as keeping the cancer in check was concerned. So I asked if I could get scanned again to see what was going on with my tumors, and this was arranged for Wednesday, December 13, so that the oncologist would have the scan results when we saw her on December 15.

The MRI on December 13 was a bit of an adventure. (The MRI covered my midsection and lower abdomen; I also had a CT scan of my upper body – that was quick and easy, unlike the MRI.) I’d had some difficulty with my previous MRI as well. At one point the MRI technician had told me that I should “breathe normally”; this instruction I found really unhelpful, since I wasn’t sure in what way my previous breathing had been abnormal. Then later they did a series of quite quick images – I’d hold my breath for about 5 seconds, instead of the 20+ seconds I’d gotten used to – and this series seemed to go on forever. Afterwards – but only afterwards – the technician told me that I hadn’t been breathing right. Apparently the machine, or its operator, just repeated each image until I finally held my breath correctly, but no one explained that this was happening or told me what I was doing wrong. I'm glad to say that MRI’s do not bathe you in dangerous radiation (as I confirmed on the internet later that day); otherwise I would have been very upset.

Still, I was still dismayed enough about my last MRI that on December 13 I made sure to tell two or three different staff people that if I was doing something wrong I needed to be told what it was so I could fix it. The technician on the 13^th did just that; I can’t fault him at all. Sadly, knowing what was wrong did not enable me to fix it. The problem: I kept falling asleep.

One might think it would be impossible to fall asleep during an MRI. If you’ve had one of these, you know that throughout the 45 minutes or more that the test takes, you are simply bombarded with loud noises. There are many different noises, perhaps corresponding to different inflections of the magnet that is creating the Magnetic Resonance Images. I have to say that while I can understand the idea that bending a magnet would make a noise, I don’t at all understand how it produces the variety of rhythmic noises that in fact accompany an MRI. But one thing is clear: it’s noisy.

Noise, however, doesn’t necessarily keep me awake. I feel asleep once at an NBA game! It certainly didn’t keep me from falling asleep during Wednesday’s MRI. The problem with falling asleep was that when I did so I also began breathing more shallowly (which must have been the abnormal breathing the technician had complained of in the previous MRI). Again one might think that shallower breathing would actually be good for the MRI, since it would mean that everything was staying more in one place. But evidently the MRI is designed to compensate for the patient’s normal breathing (a nice computational feat, it seems to me), and so when what it encounters is less-than-the-normal breathing, it produces images that are blurred.

I was trying hard to stay awake. I reminded myself that this was really important; I tried counting during each breath; but despite my efforts I would catch myself dreaming and even though I thought I was catching myself quickly, it wasn’t quickly enough. In the end the technician decided to have me do more of the “hold your breath” images – I was pretty good at holding my breath as instructed, and stayed awake while I did so – to compensate for my failings at other stages of the test. It was a relief to learn from the oncologist on Friday that the resulting images were good enough to read. And the technician didn’t report me as a bad patient, as the oncologist told us they sometimes do! Actually, the technician said to me afterwards that the MRI can put patients into a trance – I’m not sure that quite describes what I experienced, but I was glad to know I wasn’t alone.

One more thought about why I fell asleep: I was sleepy. Why? One reason is that I’ve been having trouble sleeping – which may be partly due to the steroid that I’m being continuously treated with. I’ve done a surprising amount of reading in the small hours of the morning, but it seems like every minute of being awake at the wrong time costs you double later on in the day when you really want to be awake. For instance, during your MRI. The MSK folks prescribed a sleeping pill, but this pill’s side effects include things like sleep-walking, sleep-driving, and sleep-cooking, and those scared me. They also scared Teresa, who anticipated nights of her monitoring me to see what I’m sleep-doing next. So I haven’t tried these pills. Fortunately now the oncologist has suggested over-the-counter Benadryl might do the trick.

Anyway, I didn’t fail the test, and on Friday we got the results. The oncologist was very pleased, and I think a bit surprised. It turned out that in the 54 days that I’d been without chemotherapy, most of my tumors had gotten smaller; a couple had grown modestly (a couple of millimeters) but the oncologist said we didn’t need to worry about those. All of this was really good news. (What accounts for this good news? I don't think anyone knows for sure, but the oncologist had suggested even before this scan that the chemotherapy I'd already received might still be in my liver, even many weeks after the last dose was administered. We'd begun to think that that just meant I was continuing to experience the medications' uncomfortable side-effects, but these results suggest that I'm getting the primary, curative effects too.)
 
The oncologist had decided that I should have another two weeks of steroid treatment, which a few days earlier would have worried me; but with this good news about my tumors’ performance over the previous weeks, I felt quite comfortable with postponing the return to chemotherapy once more. And all the better that Friday’s blood tests, when their results came in, showed my liver was improving. Meanwhile the steroid dose was reduced again; I think what I’m receiving now is about one third of what I started off with. With all this, it seems as if the logical next step will be the resumption of chemo at our next appointment, on December 29, or soon after that. The whole thing adds up – and I mean this without any irony, or at least without much – to a holiday gift. 

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.