Saturday, November 25, 2017

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.

Sunday, November 19, 2017

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: 

Saturday, November 4, 2017

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.

Sunday, October 29, 2017

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.