Update: a quiet end of the year

Last Wednesday, December 21, was my regularly scheduled chemotherapy day. It went pretty well – well enough that afterwards Teresa and I had the energy to walk a little ways downtown to Bryant Park, near the New York Public Library, to do some holiday shopping in the open-air market there.

The previous two weeks had been pretty uneventful – which was actually quite a big event, since what it meant was that I hadn’t had another round of the painful digestive issues that had made things difficult in previous chemo rounds. To our surprise, however, on Wednesday morning a few hours before the treatment – we got up about 5 AM to drive to New York before rush hour -- my stomach or abdomen began to hurt in roughly the same way as in those previous episodes. That was disappointing, but fortunately there was one important difference between last Wednesday and the two previous rounds: it wasn’t as bad, and the pain pills I took brought it mostly under control. That’s been the case since then as well; with enough attention from me to the details of my digestion, it stays pretty much okay.

In one sense, it was good that this incident took place on Wednesday morning, because it meant that my oncologist got to see me as it was taking place. She pushed and prodded my stomach, examined my morning’s lab data, and concluded that we should wait and see. She raised the possibility of moving up the date for my next scans, currently scheduled for early January, but felt we didn’t need to do that if matters remained under control – as they did.

So off we went for treatment. (Actually, off we went back to the waiting room, where we read for quite a while; then we went for treatment – but we’ve gotten used to this pace.) I was having both the systemic chemotherapy, gemcitabine (which used to be intravenous but now goes in through my wonderfully efficient new port), and the pump chemotherapy, FUDR. There were only two surprises along the way. One was that we gradually realized that the nurse who was responsible for most of our treatment, a young man who looked familiar but whose name we didn’t seem to know, was actually the identical twin of another nurse on the ward. I think the second twin may have been a holiday temp; at least I don’t recall seeing these two guys walking up and down the treatment suite hallway ever before!

The other was that when it came time to administer the pump chemotherapy, the nurse who handled that (not the newly revealed identical twin – if he wasn’t a regular member of the staff then he wouldn’t have been likely to know how to use this particular technology) said to us “For your information, the dose has been reduced.” It turned out that the dose had been reduced by 50 percent. The reason was that one of my liver function numbers, as measured in that morning’s blood work, was off – not wildly off, but far enough to trigger a mandatory dosage reduction. The rationale is that probably what’s causing the liver issue is that the pump chemotherapy is a burden not only on the cancer cells of the liver but on the healthy cells as well. Actually, this was the second time the liver numbers had been off, but the first time they didn’t reduce the dose because they thought the problem might be dehydration caused by my digestive problems; this time, I think, my digestive system was functioning well enough that that explanation couldn’t account for the liver number. It was disappointing not to get a full dose, but Teresa tells me that many pump patients have to have their dosage adjusted, and often more quickly than I’ve had to. Now, in any case, I’m hoping that a half-dose holiday will let my liver get back to normal, so that the chemo can be ramped back up too.

So that was that. I’ve now been in chemotherapy – with a pause for surgery along the way – for a bit more than a year. I don’t love it, but I can live with it, and I’m very grateful that so far it has helped me fight this disease with some success. I’m ready for more in the New Year. And Happy New Year to all of you!

Hoping for monotony

Cancer treatment is sometimes monotonous, sometimes not. I suspect one would rather have it be monotonous. But here are my recent highlights:

First, and most important, when I had my latest scans – not the ones required when I recently had to go to Urgent Care, but the regularly-scheduled scans that are part of the clinical trial I’m in – they basically confirmed what the Urgent Care scans had shown. That is: my largest tumor is unmistakably smaller, while three other, much smaller ones seem larger. That might seem rather ambiguous news, but my oncologist and the clinical trial radiologist concur that the seeming growth of the smaller ones is actually the result of their liquefaction, in the course of which the inside material of the tumors dies. So it appears that, a year after my diagnosis, overall my tumors are less substantial than they were back then. And that’s very good news.

Second, I now have a new piece of hardware: a port. Many intravenous chemotherapy patients have ports; in fact, it may be very unusual to receive intravenous chemo for as long as I have (I started last December) without having a port installed. I was the reason for the delay, I’m afraid; I didn’t want anything else installed inside me if I could help it. But now I’m a convert to ports. My friend who's been around a similar block said I’d like it, and she was right. The port itself lies under my skin just south of my right shoulder; it can be felt but it can’t be seen under my shirt. What it does is to enable the hospital to take your blood, or inject chemotherapy (or other medicines) into your blood, without using your accessible veins, and that’s good, because over months of chemotherapy your veins get less and less accessible. With the port, a single needle-prick gives the medical people access, via a catheter that runs over to my circulatory system near my heart, to a vein that’s so big that chemotherapy doesn’t faze it. All this is good, and the process of installing the port – an outpatient “procedure” in which I was in some sense still conscious, but never felt any discomfort at all – not too burdensome.

Third, the least monotonous feature of the last couple of weeks: about a week after my last chemotherapy infusion, or in other words about a week ago, I began to have a lot of abdominal pain again. This was what had taken me to Urgent Care a few days after the previous round of chemotherapy, and it was what I thought I now knew how to control: for pain, take pain medication. I did, but not enough. We wound up back at Sloan Kettering on Friday of last week, to get IV fluids (because by then I was probably dehydrated), to receive a dose of IV pain medication (through my handy new port), and to consult with the pain management specialist. She was very helpful, but the help came at a certain price: to control the pain required a lot of medication, in fact about three times as much as I'd had before. I also switched medications, so the quantities before and after aren't precisely comparable, but my general sense is that now I’m taking, and authorized to take, more.

All of this worked; the pain receded, and that’s great. But the pain medication also seemed to make my thinking fuzzy. Perhaps that’s not so, but it is certainly worrying, and so now I’m trying to reduce what I take as rapidly as possible (but not faster than that!). The best way to do that is to avoid the incidents that required the medication. Doing that in turn involves an increased level of attention to my digestive process that I don’t entirely welcome either – but both these pain incidents seem to me to have been about digestive events (whose details I'll spare you), and as a result, my “bowel regimen” is now a matter of great interest and importance for me.

Tomorrow is my next chemotherapy day. I am hoping that by eating right and medicating right I can, this time, achieve monotony!

Chemotherapy isn't routine, and neither are scan results

This past Saturday morning I woke up at 4 AM, and realized that the left side of my abdomen hurt. I was frustrated to be up so early, but not totally surprised: the steroid that I take to ease the side-effects in the days after my IV chemotherapy tends to keep me wired and to wake me when I’d like to be sleeping. I also didn’t like it that I was in pain, and I didn’t understand why that was so, since I’d been having such a pain-free case of cancer that I’d recently taken off my pain patch and hadn’t had any pain medication of any kind for some weeks.

I didn’t like it even more when the pain got worse. By later that day, on the subjective but still indicative 10-point scale that Memorial Sloan Kettering employs, I was ranking my pain at a 7 or 8, numbers I’m not sure I’d ever reached before in the course of my illness. Along the way, I first tried a “Gas-X” on the theory that this might be indigestion, and then Teresa restored my pain patch and I started taking pain pills, but they didn’t succeed in removing the pain. I also was getting nauseous, a common cancer and chemotherapy side-effect but another one that I personally had had very little experience of; I resumed taking an anti-nausea drug too.

We limped through the day, and I felt a little better by later on. But the pain didn’t go away overnight – I’d vaguely hoped for some sort of “re-set” – and the next day, Sunday, it was back. It probably wasn’t as bad as it had been on Saturday at the worst, but it was still there, and the pills weren’t helping.

So at this point, after two conversations with my oncologist’s covering physician (who was careful and helpful), we decided to go into Memorial Sloan Kettering’s Urgent Care ward to find out what was going on. We arrived at 7:20 PM on Sunday night. We left at 4 AM Monday morning.

In those 9 hours, Sloan Kettering accomplished two important things. First, and most important, they dealt with the pain. It turns out, as my oncologist explained to me the next day, that if you let pain get too severe before you start attacking it with pain medication, then it’s already too late: the pills won’t do the job. Only IV medication will stop the pain once it's settled in. Evidently the pain is almost literally in your head, and no less real for that – neural pathways have been opened up, and not ones you want open. But fortunately they stopped my pain with IV morphine, which made my pain no more than a memory and, at least as far as I could see (but perhaps I’m not quite objective!), still left me clear-headed.

Second, they determined that I did not have a blockage – liver cancer patients can get a blockage of their bile duct, which is a major issue that has to be dealt with. So that was good news. They never figured out, however, what the actual cause was. This is a bit startling, since I felt pretty bad over the weekend, and whatever caused me to feel that way once could return again. But I’m inclined to think that what actually happened was that some relatively minor disorder got started and then the pain compounded itself in the ways I’ve already explained. Maybe it was wear and tear from the gemcitabine (the intravenous chemo drug I’d received the preceding Wednesday, which these days seems to put various kinds of stress on me each time I take it); maybe it was some digestive issue as I'd originally guessed; maybe it was a backlash started by my ending my pain medication a couple of weeks earlier. In any case, now that I know how to respond to the pain if it returns – take pain medication quickly – I think I can avoid another weekend like this one. But the whole thing is certainly a reminder, in case I needed one, that chemotherapy really isn’t ever routine.

Meanwhile, they told me, based on a CT scan they'd done of my abdomen to see what was causing the pain, that my tumors had grown. Actually, the urgent care doctor said something like, “You don’t have a blockage. But your mets have grown.” “Mets” is short for “metastases,” and lots of people use the shortened version – but no one at Sloan Kettering, as far as I can recall, had used this word to me before this weekend. I found myself doing a double-take, on these lines: “Wait – my mets, my tumors, have grown?!” I didn’t like the doctor's delivering this important news in this casual way, but even more I didn’t like the news.

Only it turns out that what the urgent care doctor told me was probably wrong. That doesn't mean the urgent care radiology reading was poorly done; what it definitely does mean is that reading these images is contextual and subtle. As Teresa points out, even at Sloan Kettering, the urgent care doctors are not necessarily experts on each of the cancers that pass through their doors. 

The experts are the people who treat a given type of cancer day in and day out: in particular, for me, my oncologist and the radiologist who is responsible for reading the scans in the clinical trial that I'm part of. The next day, Monday, my oncologist consulted with this radiologist, and the radiologist reported that my largest tumor was actually now smaller. As to the three tumor segments that the urgent care report said were bigger, the study radiologist thinks that probably what’s really happened is that these tumors are liquifying. Liquifying, I take it, is a step in destruction, and as these tumors lose coherence and solidity, they spread out – producing what the urgent care report mistakenly saw as evidence of tumor growth.

Of course this reading still must be confirmed with tests better focused on this precise issue. That's the function of the MRI scan that had already been scheduled for today as part of the regular screening in my clinical trial. I’ve now had this scan (plus another CT scan, this one of my chest rather than my abdomen), and will be waiting for the results – experiencing what other patients call “scanxiety.” If all went well, however, then in about a week we’ll have evidence that the experimental treatment program I had surgery to join is really working.

Giving thanks

Just over a year ago, on November 11, 2015, a Memorial Sloan Kettering doctor told Teresa and me, explicitly, that I had cancer. The exact diagnosis required a biopsy and took a little longer; we learned that the cancer I had was cholangiocarcinoma on November 25, 2015.

It is now a year later and I am still here. I’ve had some ups and downs but the latest indications are that my current chemotherapy is degrading my tumors. Meanwhile I’m still able (except when I’m recovering from surgery) to research and write, and (even when I’m recovering from surgery) to enjoy happy times with my family and my friends.

So I give thanks, deep thanks, for this year that I’ve enjoyed, and for each individual day along the way, and hope for many more days and years to come.