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.

Not so full disclosure

Q: What do you say to your law school’s dean at your 40^th reunion, when you know you have liver cancer and she casually asks, in a brief conversation at the end of a panel presentation, how you are?

A: You say: “Fine.”

Or at least that’s what I did a few weeks ago. I told some other people about my illness, but in general I didn’t go out of my way to do so. I had, I should add, described what was happening to me in my entry for the alumni book – but it turned out that not very many people were pouring over the alumni book!

Why not say more? Perhaps for these two reasons: First, the dean wasn’t bargaining on a revelation like mine. She was engaged in being friendly to hundreds of people whom she knew only slightly, if at all (that included me); she wasn’t in a position to process a disclosure like this one, and perhaps not in a position to respond properly to it either. I didn’t want to impose on her.

But also, second, I didn’t want to take on the burden of being a cancer patient myself. I was there to be part of the reunion – to reacquaint myself with people I hadn’t seen in many years, to see what my law school had been up to, and to have fun with Teresa. I wasn’t so much interested, I think, in revisiting my status as a cancer patient. So I wasn’t just avoiding imposition on others, but allowing myself the benefit of a bit of a cancer vacation too.

Perhaps these are the reasons that many people are quite private about their cancer diagnoses. I haven’t taken that approach at all (as readers of this blog know very well). But if this is what some people are thinking, I begin to see their point.  

Meanwhile, the reunion was fun. And even though I actually knew quite a bit about what had been going on at the school over the past decades – since I’m a law professor myself – I wound up with enough sense of the value of the school and of my connection to my classmates that my wife and I made a modest reunion gift.