Friday, March 16, 2018

Back to treatment

Last Friday, March 9, Teresa and I made our way back to MSK. I wasn’t terribly optimistic. The last time I’d been taken off treatment because of my liver’s reaction to the chemotherapy – in the fall of 2017 – it had taken two months before MSK was satisfied that my liver was restored to health. This time it had just been two weeks. I also hadn’t been feeling that well (more on this below), so I didn’t have any strong intuition that everything was now working as it should inside me.

But our experience on March 9 was completely different from what it had been on our previous visit, on February 23. That time the whole process of getting my blood tested and the reports submitted to my oncologist had gone awry, with the result that when we left the oncologist’s office we didn’t know, and neither did she, what my blood numbers actually were. This time the testing took place promptly, and when we arrived in the oncologist’s office her staff already had my results (though they weren’t yet completely posted on the MSK portal so that we could see them too).

The results were good. In fact they were really good. All my liver numbers were back in normal range. Meanwhile my platelets, which had dropped quite sharply (platelets aren’t a liver issue, but platelet production can also be affected by chemotherapy; in fact, this is a quite common side-effect), were now also back solidly in normal range. This particular change no doubt owes a great deal to the many platelet-encouraging foods that Teresa had fed me since our February 23 visit. (Papayas, avocados, lentils – platelet foods are good!)

Even with these good results, the oncologist might have felt more time off was needed. I’d had pretty good blood work at one point during the previous chemo holiday, and MSK had felt that what I needed then was additional downtime. But this time there was no delay. The actual chemo dose was reduced – just a little, the oncologist said – and later that morning it was injected into my pump. So I’m actually on chemotherapy, via the pump, as I write this.

That’s the good news, and the main news. The only fly in this ointment is that I’ve had a return of the painful stomach cramping that I’ve written about on this blog in the past. The worst night was Tuesday, March 6. As it happened, that night we were at Teresa’s mom’s house because of an impending snowstorm. We knew that Teresa would need to be there to deal with the snow – her mom wound up with about two and a half feet in her backyard – and though the snow wasn’t really due in force till Wednesday, it seemed best to be there in advance. And Teresa was concerned that if she left me at home while going to take care of her mom, I might suddenly need her help too. I didn’t think that was very likely, since I hadn’t had any sudden episodes in quite a while, but I conceded the point. Up we went to her mom’s house (it’s about 15 miles north of ours), and almost as soon as we got there my stomach went on the blink. About 5 hours later, when I was completely emptied out, it settled down, and the next day I felt just about normal, and while the snow came down in really remarkable quantities I was able to do some writing. 

The best thing about this digestive trouble is that it doesn’t actually appear to be a symptom of my illness. Instead, the word the oncologist used – and Teresa had also picked up on – is “kinks.” Not kinks of the sensual kind, but rather of the plumbing variety. There’s a lot going on in my abdomen these days: the chemotherapy pump itself, the catheter leading from the pump on my lower left side over and up to my liver, the surgical staples and maybe some scar tissue left over from the surgery that installed the pump, and of course the liver itself, functioning pretty well but still hosting a bunch of tumors. The net result: sometimes things get blocked. The cure, besides patience, may actually have something to do with relaxation and visualization of unblocking – though in the middle of one of these episodes, peaceful visualization is not easy to achieve.

Anyway, no real harm done. Still, the issue hasn’t quite gone away. I haven’t had anything like a full-blown stomach episode this week but I’ve had more discomfort than I would have liked. I’m taking as many medications for digestive issues as I can, hoping to get things to become once again uneventful, and reminding myself that I should be visualizing an unkinked digestive system.

Monday, February 26, 2018

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!

Saturday, February 10, 2018

Three things I learned at the Cholangiocarcinoma Foundation conference

The annual conference of the Cholangiocarcinoma Foundation is a pretty special event. The Foundation has a core of dedicated, altruistic patients and caregivers who help everyone who attends to feel like part of a community. Teresa and I were eager to connect with other members of our patient community, and we did. At the same time, the event is a snapshot of the state of scientific research into this disease. One day is “science for patients,” and not too hard to follow. The other two days are full-throttle “science for scientists,” and way too advanced for me to understand perfectly – but making the effort to try to keep up gradually paid off and I felt like I left the conference understanding a lot more than I had when I arrived three days earlier.

There’s a lot I could say, and may say in future posts, about the science, but right now I want to comment on three more straightforward propositions that came clear for me at the conference.

First, doctors who give prognoses are not necessarily right. I already knew this in theory, of course, but it was great to hear people talk who’d been told they had only some number of months to live – years ago!

Second, there are some really long-term survivors of this illness. Again I knew that this should be true, and I’d even met one or two before. But when we encountered a 10-year survivor and an 8-year survivor at this conference, both of them going strong, I was impressed. I have the feeling that part of what has made this disease’s statistics look so grim is that it has been so little understood and so inexpertly treated, and this conference in and of itself is a step to change all that.

Third, and on a very different note, Teresa and I learned more about the actual world of treatment as it is right now, and in particular about the actual world of insurance. We met two or three families whose insurance covers them only in-state. This disease requires expert treatment by doctors who know its features well, but it’s a rare disease so the doctors who can acquire that kind of expertise are located at just a few places around the country. So what do these families do if none of the major cancer centers is located in their state? What political calculation was it that risked the health of people like these?

So we encountered community and science, hope and injustice, all in the course of just a few days. A valuable conference to attend.