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. 

Two years of cancer

On November 25, 2015 Teresa and I learned that I had cholangiocarcinoma. It was a frightening time.

Now here we are, exactly two years later. I’ve been in chemotherapy more or less continuously through that time, and expect to stay in it for the foreseeable future. It’s not something I’d have done if I didn’t have to, but that said, it’s not too bad either. It’s also worked pretty well in keeping the cancer in check.

As a result, I’m still here and still going strong. With Teresa’s constant help, I’ve learned to live with cancer. I’ve been very fortunate to be able to do work that I enjoy – writing a biography of a great South African judge who was also a friend of mine – and I’ve appreciated each day (okay, most days) in a way that I might have been too hurried and harried to do before.

It’s good to be here. On to the next two years, and the two years after that, and more.

No news is pretty good news

Teresa and I went to Sloan Kettering on Friday, hoping that my liver had gotten over the inflammation it had suffered as a result of my chemotherapy, and that I could resume the chemotherapy now.

What we learned was that in fact my liver is much better. But the oncologist decided to give me another two weeks of steroid treatment of the liver, rather than to start back up with the chemotherapy right away. I was disappointed, but I can’t really disagree with her decision (even aside from the fact that she’s the doctor and I’m not!), because this will give my liver more time to really settle down, and that should make it more likely that the future treatment – scheduled to resume in December – will go well.

Meanwhile I was in good enough shape to fly with Teresa to Atlanta last weekend. There we attended the latest iteration of the Richard Ellmann Lectures in Modern Literature, named for my father and organized by Emory University. The lecturer, who was very interesting, was the novelist Colm Tóibín. Our role was to be the appreciative Ellmann family members (along with my sister Maud and her husband John) – and since we in fact did appreciate this event very much, that was an easy role to play. Here's a picture of Tóibín, Teresa and me: 

Ambiguity and (too much) excitement

The upshot of my trip to Urgent Care and then my 39-hour hospitalization at MSK last weekend was that I received a dose of steroids to flow slowly through my pump to my liver and calm down its inflammation. Yesterday, November 3, Teresa and I went to MSK to see how this was going, and the answer we got was a bit complicated.

First, as usual they took blood and tested it on a wide range of criteria, and the results of this testing were good. The indicators of liver function, and the blood tests in general, showed improved results. Not yet back to where I was before this episode, but improved. Based on this, our oncologist proposed to give me another dose of the steroid infusion, and have me spend two more weeks off of chemotherapy while my liver recovers more fully. She also plans to reduce the chemotherapy dose somewhat. Since a central goal of the chemotherapy is to keep my liver functioning happily, I think all of this makes sense.

Second, however, MSK now had the results of one more MRI, the one done while I was hospitalized. This scan came only 11 days after the previous one, whose encouraging results I discussed in my last post; the reason for a scan so soon after that one was to make sure that the difficulties for which I had been hospitalized weren’t the result of some new development of the cancer itself. The results from this scan came up on the MSK patient portal as we sat in the waiting room, so we read it first without the benefit of the oncologist’s expert assessment.

Reading the scan report on our own was unsettling. The radiologist’s report found that there seemed to be a “slight increase” – too small to measure, our oncologist would tell us when we met with her a few minutes later – in a tumor extending out into the bile duct (which actually carries the liver bile out to the intestines). It seems conceivable that this growth could have caused the liver inflammation that was found during my stay at MSK last weekend.

But whether this new growth even exists is uncertain. On Thursday, the day before she met with us, our oncologist presented the scan results to MSK’s “tumor board,” and she told us that the members of this board themselves found the scan pictures confusing as they tried to measure differences, if any, between this scan and the earlier one. If there has been growth at all, it’s very small, and meanwhile the other tumors – whose contraction was recorded in the previous scan – have not grown. Perhaps most important, the steroid that’s being used to treat the inflammation appears to be working; that makes sense if the inflammation is a chemotherapy side effect, but not necessarily (I gather) if the inflammation is a result of tumor growth. So these possible findings from the latest scan didn’t change the oncologist’s mind about what we should do; the current chemo still seems to her to be a viable treatment, and we are glad to follow her judgment on this.

Since the only treatment I received at MSK yesterday morning was the replacement of one steroid infusion in my pump with a new one (and since we had started the MSK day at 7:15 AM), we were done with our MSK visit by about 10 AM and home by about 11 AM. Then we passed an uneventful day – but not an uneventful night. That night (last night) we went out to dinner at a local Indian restaurant, and I ordered curry. I didn’t order specially hot curry, and in general I’ve had little problem with spicy foods since I got cancer, unlike many patients, but last night apparently wasn’t my night.

By about 11 PM, as Teresa and I watched a rental movie on TV, I found myself in another episode of acute abdominal pain. I’ve had these before, stretching back to December and November of last year, and in fact a shorter episode had been part of what led to my Urgent Care/hospital visit last week. But this one was more intense. It eventually featured a lot of vomiting, and twice while vomiting I passed out (as we later learned, the pressure of the vomiting likely affected the vagus nerve and that would have caused me to faint). By this point, around 2 AM, Teresa was alarmed and I was feeling overwhelmed. Teresa called the covering physician at MSK, who told us we should get seen without delay; we planned initially to drive into New York to make another visit to MSK Urgent Care, but that drive began to seem awfully long given the condition I was in, and in the end we called 911 and an ambulance came and transported me to a nearby hospital in New Jersey, St. Barnabas.

I was not feeling well at all – and then an odd thing happened. I was sitting up in the ambulance (I’d gotten from our bedroom to the ambulance with the assistance of the EMT and ambulance staff), and as we drove the twenty minutes or so to the hospital I began to feel a little better. That may have been because the drive bounced me around a bit, and moved things around inside me. But the ambulance staffer who was sitting across from me also contributed, because instead of letting me withdraw into myself and the discomfort I was feeling he engaged me in conversation. This began with prosaic tasks like confirming my name and address, but gradually moved on to a discussion of the biography I’m writing (which he said sounded “awesome”) and of the work he does (partly as an ambulance staffer, partly as a firefighter at the firehouse nearest to where we live). I'm grateful to this caring man.

We arrived at St. Barnabas, and they quickly hooked me up to IV fluids – I was certainly dehydrated. They also gave me anti-nausea medicine. What I had hoped they would do is give me pain medication intravenously; in the past that had been what MSK did and it had seemed like the only thing that would work once the pain had reached a certain point. But they didn’t do that; they might have done so eventually, but first they wanted to do x-rays, and before I got more radiation we wanted them to look at the MSK information which we had available on our phones. Meanwhile time passed, Teresa and I slept, and gradually it became clear that the pain had lessened, not to zero, but to a point where I didn’t need the intravenous treatment. Meanwhile St. Barnabas did its own blood tests, whose results seemed to my eyes to be reasonably good, and they tested my ability to drink a half a glass of water and keep it down (which I did). So we all decided that nothing more needed to be done, and about 7:30 AM Teresa and I drove home.

Since then we have been taking it easy. I feel better, though my stomach still hurts a bit and I’m tired; Teresa is tired too; and we are agreed that this was way too much excitement. Hopefully it won’t be repeated soon.