An annoying day at MSK

So last Friday, February 23, we went into MSK expecting to get the second round of my newly resumed chemotherapy. But it was not to be. How’s here it went down (as younger folks than I might put it).

We arrived bright and early, as usual, and quite quickly the first part of the lab work – taking my vital signs (temperature, blood pressure, heart rate and weight) – was complete. Normally at this point I move pretty quickly to the second lab stage, the day’s blood work. For some people, this is all one process, but because I have a “port,” a device implanted a little below my right collar bone to allow access to my circulatory system without wearing out the blood vessels in my arm, and because the port has to be accessed with special procedures designed to minimize the risk of any infection, I generally get the blood work done separately. Still the second stage usually follows pretty quickly on the first, but on Friday there was a delay, long enough that I went to ask if I was on their list and the person doing the port work told me there’d been a problem that had caused the delay.

Anyway, eventually I get called back for the second stage. This went okay except for two things: First, the nurse didn’t close the curtain around the workspace in which she was accessing my port. It’s true that accessing the port isn’t that private a process – the port is on my upper right chest, and I unbutton my shirt and pull down my undershirt to give the nurse access to it so that she can insert the rather large needle and then tape things in place and actually draw the blood. But still it’s not a process I really want to share with others, and normally the nurses automatically pull the curtain. I had to ask this woman if it would be all right to close it, and though she agreed without any rancor, the fact is that the curtain was never closed all the way. Then, second, this same nurse – who must have been new – also didn’t give me the ID bracelet that I normally get at this stage. She said someone would do that later, but in fact no one did, and so for the first time that I can recall in 2+ years of going through this process, I went through the day without that ID bracelet.

Then we waited. The doctor has to have the results of the blood work in order to be sure that I’m in good enough shape for treatment. Usually it takes an hour or so for the blood to be run through the many tests MSK does (for which I’m grateful!), and quite often we get the results on the MSK portal before we’re even called in to see the doctor. But this time we waited, and the results didn’t come in.

Nevertheless we got called to see the doctor. First we met her Fellow, who seemed to be another person from the pipeline of Irish doctors coming to MSK. (Our original oncologist was part of this pipeline, and has now returned to the old sod, and this woman was at least the second additional Irish doctor we’ve encountered.) We had a good conversation with her, in the course of which I got to report that the Tamiflu prescription listed on my MSK drug list had never actually been communicated to me. This was the previous week’s adventure: my sister Maud and her husband John came for a very nice visit, but during the visit – in fact, partly over dinner at a fairly small table at a restaurant near our home – he came down with the flu. I got a list of suggestions for vitamins that might reduce the chance that I’d catch the flu, called MSK to ask if they were all right for me to take, and never got an actual answer, but the covering nurse, while doubting that the oncologist would approve of the vitamins, said that perhaps Tamiflu would be helpful. But she never got back to me about it; when I called MSK again the next day no one mentioned it; and so it wasn’t until 10 days later that I learned that it had been prescribed. In fact I didn’t realize this completely until I went to my local pharmacy the following day and found that it was waiting for me. But none of that was this Fellow’s fault, and in fact the oncologist said she would speak to the nurse in question about it.

We also had a good conversation with the oncologist herself, basically about what Teresa and I had learned at the Cholangiocarcinoma Foundation conference at the beginning of February. What we’d learned included the fact that chemotherapy via the pump seems to be a quite effective mode of treatment – if done at MSK! Why only here? Probably the answer has a lot to do with the expertise MSK has in using this method of treatment, and my oncologist (whom my first oncologist selected for us) is an expert in exactly that. So we’re in no hurry to leave treatment via the pump, and said so. That said, we also reported the view of a lot of people at the conference that it was important to have one’s tumors checked for new or different mutations, a step that seems particularly appropriate for me since my three biopsies so far have each produced different and nonoverlapping results, and the oncologist seemed to agree that this would make sense. In addition we discussed various conceivable clinical trials, which the oncologist offered thoughtful comments about. But all this was in the context of my impending chemotherapy on Friday; I think everyone assumed that that was what I was about to get. I looked and felt reasonably well, and so we thought my liver would agree and the blood work would show it. But when we left the doctor’s office she still didn’t have the blood results either.

We returned to the waiting room, and did some more waiting. Eventually I asked one of the administrative staff to see when we could expect to move forward, and she checked and found out that I had been “resulted” – the test results had come through – even though we couldn’t yet access them (and she perhaps couldn’t either). But she said she would call back to someone inside (probably that meant, “inside the chemotherapy suite,” where the treatment is actually administered) and let me know. Though we were sitting pretty much in her line of sight, she never did get back to us.

But finally one of the callers (the people who call your name and collect you and bring you to one place or another) emerged, and brought us back to the chemotherapy suite. There a nice nurse was waiting, and soon explained that the delay had been at least partly because my medication had to be returned to the pharmacy. Why? Because I was not getting chemotherapy after all. My liver, fine two weeks earlier at the end of the chemotherapy, had apparently spent the two weeks since then – the rest period when only saline solution and blood thinner were going into the pump – getting inflamed. And now I wasn’t able to have any treatment – except a resumption of the steroid treatment that had been used between October and January to calm my liver down after the last time it got inflamed.

I couldn’t quarrel with this. That is, logically I couldn’t argue with the necessity of soothing my liver. The liver has to work. But I also couldn’t quarrel with it because there was no one to quarrel, or even talk, with. When we saw the oncologist she didn’t anticipate this, and when it happened she no doubt was with other patients, with their own sets of questions. It seemed pointless to ask for her nurse to come talk with me; what could he say except that the doctor had ordered this? So there was no one to discuss this with. There probably wasn’t anything really to say either, but I would have liked an opportunity to plead my case, or at least to hear it explained by the person making the decisions about it. I certainly have various questions now, and will aim to get answers to them at or before our next meeting with the oncologist about two weeks from now.

One thing that has struck me is that, in hindsight, it may have been unfortunate that I was put on just saline solution and blood thinner for the two weeks after my last round of chemotherapy. It’s clear that steroids tend to reduce liver inflammation; that’s why MSK used it to bring down my inflammation last fall. In fact, MSK also gives me two doses of steroid (one by itself through my port, one mixed with the 5FU chemo drug and infused through the pump) as part of administering my chemotherapy, at least partly in order to get a head start on keeping the liver calm. The one time I don’t have any steroid is during the rest period, and it was during that rest period, and not during the chemotherapy period that preceded it, that my liver went awry. The cause was probably the residual effects of the chemotherapy, but what I’m thinking is that as those effects were taking place, I didn’t have any protection in the form of steroids to tamp them down. I don’t want to be on steroids all the time – they have their own side-effects, some of which I’ve experienced – but I would rather do that, at least for a while, than be unable to maintain a regular chemotherapy schedule. So I want to discuss this idea with the oncologist in time to affect what’s done next. But at least now I am back on the steroid, being used once again to calm my liver.

In short, an annoying day at MSK. I realize that some part of my annoyance may be the result of the mood-impacting effects of steroid treatment. But not all!

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. 

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: