Three years in and still going strong

Today, November 25, is the third anniversary of my receiving the diagnosis of cholangiocarcinoma. The actual diagnosis was not the first sign that I had cancer; in fact, tests had already made that clear. But the last round of testing convinced the doctors that the particular kind of cancer I had was bile duct cancer, a/k/a cholangiocarcinoma, and that’s what I’ve been treated for ever since.

And here I am, three years in and still going strong. The doctors believe that the radiation treatment I had this summer either killed or knocked out of action all my remaining tumors. Based on that, my oncologist told us this month that she was completely comfortable with my not having another scan until January – and that in turn points to her feeling that there would be nothing for a scan to find. Hopefully the scan in January will confirm this, and that would be really good news. But if what it shows is that something has returned, and if that something can in turn be hit by another round of radiation, that will be good too. 

The only downside, which I’ve written about already, is the side effects. I’ve got several, none terrible but all a bit of a bother. I’m tired a lot, and my energy for things like a regular daily walk has declined, as has my walking speed. I’m retaining water, though fortunately not too much; to deal with this, however, requires medicine that in turn can affect other parts of me (basically, the balance seems to be between my liver and my kidneys), so the doctors are doing their best to give me just the right amounts. And the side-effect that may puzzle the doctors the most is that I have cramping in my hands and legs. This one doesn’t seem to have a single cause; it’s evidence, I think, that the body is a complex apparatus and multiple factors can coincide in a particular effect, happily again not that severe. But the odd result of all this is that although fundamentally I’m clearly healthier – no active cancer! There’s a result I didn’t count on three years ago – in these various more superficial ways I don’t feel that great. 

All that said, however, here I am. Last night I woke up at 4 AM feeling nauseous, but a single pill did the job on that symptom. And today Teresa has spent making meat pies (with the inspiration of the British Bake Off show, which we both have been watching), and we will try these home made meat pies tonight. (We had one and it was great!) It is good to be here to get to sample this pleasure. 

While not eating pie or taking a nap to catch up on my sleep I’ve also been making revisions to my book; there is always more to do, and I’m still involved in complex dealings with potential publishers, but today I completed one set of reader’s comments, and so this day marked a writing milestone too. I hope the book will actually be published around mid-2019. If and when that’s done then I will face the interesting question of what to do next. One particularly intriguing possibility is that I write manuals for cholangiocarcinoma patients on the law governing their health insurance, a topic that turns out to have many pitfalls which can confuse a lawyer, e.g. me, and no doubt frustrate a non-lawyer even more completely. Or, of course, there’s the possibility of a European river cruise. Or other places to travel and books to read. I’m looking forward to the chance to choose. The world has so much going on in it! 

An update -- on side-effects and the subway

Back in the summer, as readers of this blog will recall, I had radiation treatment, fifteen days of treatment which concluded in mid-July. It was high-tech and highly effective; the doctors who reviewed the post-treatment scans found no clear evidence of active cancer, and were very pleased. There’s no sign that this has changed; my cancer may come back but it has been quite decisively defeated for now.

What hasn’t gone away is (or are? - should this verb be singular or plural?) the side-effects of the treatment. There seem to be two sources for these side-effects. The first is the radiation treatment itself, which didn’t feel in any way unpleasant at the time but evidently is a deep burden on the body. The second, Teresa and I think, is all the prior treatment that I’ve had. My liver, in particular, withstood all this treatment for years – but it seems as if the radiation treatment was a tipping point, and now the side-effects are getting more play.

Not that much more play, I should emphasize. I’m still reading and writing for my biography of Arthur Chaskalson, South Africa’s distinguished jurist. I’m also negotiating with the publisher with whom I have a contract to see if we can find a way to agree on the right length for the book (what I gave them was much longer than what they turned out to want); this process is arduous enough to count as a side-effect all by itself!

But there are medical features, the main one of which is sheer fatigue. An example: the day before yesterday, October 26, I was in New York to attend an excellent workshop presentation by a former colleague, but before that got started I made a trip to my dentist. This required coming up out of the subway at 54^th Street and Madison Avenue. Fine – except that at least in the subway hallways that I walked through (and I don’t know any other routes because I don’t know this station) – I confronted three ways out: an escalator running down; a staircase; and another escalator, which wasn’t going up or down. The result was that I had to climb 80 stairs, with only the stairway rest platforms to stop at (there were more stairs afterward, but I’ll stick to these 80). It’s clear, unfortunately, that I don’t have 80 steps of ready climbing ability available for the asking. I went slowly up; along the way a woman asked me if I needed her to get me some water. I did, actually, but declined – I couldn’t really imagine how she would have carried out this generous offer, there in the middle of the subway exit route. I felt that I went through much of the afternoon barely able to move any further at all.

A side note on the subways: Subway performance is most often measured in terms of on-time trains. At the same time, having a down escalator running but no up escalator is also a sign of a system that isn’t working right – another symptom of New York’s infrastructure breaking down, and another reason why I’m fortunate to be able to stay home these days.

This will pass.  (My recovery will probably be quicker than the subway's!) I’m now doing physical therapy, and though I haven’t been at it long I feel like it has already been helpful. It will be sometime before I’m anything like “strong,” but I can certainly become stronger than I’ve been. Still, the set of side effects is startling to experience. I can and do fall asleep in a moment – and then I wake up in the middle of the night eager to read a South Africa book. Then there’s been the swelling from water retention, treated with diuretics: too little treatment doesn’t do the job, too much seems to have other internal effects. And a new antibiotic. Cramping in my legs and hands. And so on … The radiation treatment information Memorial Sloan Kettering gave me warned of possible prolonged fatigue, and other symptoms, yet it’s all a bit wearing.  Still it will all pass, as I said, some of it literally as well as figuratively. 

So that’s my news – nothing to get alarmed about, but a set of effects that I’d like to shed as soon as possible. Sorry for this prolonged complaint!

I get knocked over on my evening walk

My evening walk today was more exciting than usual, as I got knocked over in an encounter with a small child on his training-wheel-equipped bike. I didn't ask for the father's contact information at the time, and Teresa posted on a Facebook group called "Secret Montclair" to reach out to him. That prompted a flurry of comments, some quite sharply critical; the nature of those criticisms will I think be more or less clear from what follows, which is my post (accomplished by my wife on her account) in response to them. The net result is that I feel partly ridiculous and partly outraged. Anywhere, here's what my wife just posted on my behalf on "Secret Montclair," a group to which we're now saying good-bye:

*****

My name is Steve Ellmann. I am the person who was knocked over as a result of an encounter with a small child and his bicycle-on-training-wheels this evening. My wife posted a brief message about this incident, and as one commenter said, this being Montclair, 350 posts can now be expected. I should have written in the first place and I see that I must do so now. I should have asked the child’s father for his contact information, and my wife’s post and mine make that request now. I told the father that I thought I was probably okay, but wasn't sure; that remains true. 

One commenter raises his/her eyebrows because my wife’s post, based on what I told her, says that the child’s bicycle either ran into or almost ran into me. It would be nice if I could say for sure which happened, but actually people often can’t do that with sudden, startling events, and that is the case for me here. I assume the commenter would prefer that I be accurate rather than that I make up a more compelling story.

As to what actually did happen: the first I knew that anything was happening was when this little boy on his bike came up behind me. I think he called out “Sorry” as he approached me. His bike and my legs intersected – though whether I was actually hit I don’t know. I do know that I did something like a hop, skip and jump trying to stay on my feet, but I failed and eventually fell down. I stopped my fall with both wrists (they were indented afterwards from the impact with the ground); probably with my head (my glasses wound up with a leaf or two between them and my face); and probably with one knee, which is currently hurting.

The child said repeatedly that he was sorry, and I responded on the lines that I wasn’t saying anyone was bad, but that you can’t ride a bike so fast that you can’t control it. The father at one point said, perhaps to his kids, that the event was his fault. I repeated that no one had been bad, but I certainly made clear that I was mad about this happening.

What was I mad about? As I told the child’s father, I am a cancer patient. Specifically, I was diagnosed in November 2015 with stage IV cholangiocarcinoma, a cancer of the liver bile duct. No one wants to get any type of cancer, but if you look mine up you’ll see that it is a particularly nasty one. Fortunately my treatment has gone well. As it happens, the treatment included abdominal surgery in 2016 to insert in my abdomen what’s called an “intrahepatic pump.” Every two weeks, when Memorial Sloan Kettering has used this pump, it has injected chemotherapy into the pump, and then a catheter carries the medication from its insertion over to my liver. The result, the valuable result, is that the chemotherapy can be focused directly on just my liver.

But there is a catch. The pump is a once-in-a-lifetime measure. If it breaks inside me – for example, because in an otherwise minor incident something breaks in the pump mechanism – it probably has to be removed (more abdominal surgery) and cannot be replaced. That means that my chance for chemotherapy targeting just my liver by this mechanism would cease to exist. Since my survival may have depended, and might in the future depend, on this treatment, I am not happy to see it put at risk, even as the result of the actions of a small child.

It interests me that some of the comments seem to view me as clumsy or over-zealous. As to clumsiness: perhaps so; the radiation treatment I had this summer and the chemotherapy I’ve had since 2015 have all taken their toll on me in terms of side-effects. As my wife mentions in her second post, another side effect I’m dealing with is low platelets – which make me more prone to bruising from seemingly trivial events.

As to the supposed over-zealousness of my concerns: This criticism implies that in the comparison of survival from cancer and protection of the rights of inexperienced bike riders, or of riders who lack bike lanes, it is the riders whose claims should take precedence. I have to admit that I don’t recognize the moral world in which bike riding is more important than another person’s survival. I am not alone in being an older and somewhat infirm walker in Montclair's parks. There are also a lot of very young walkers. I think all of us who do so have a right to do so in relative safety. 

Another Footnote, This One Ironic

On September 12 I wrote about the failure by a senior MSK doctor to disclose his financial interests in connection with many of the articles that he was publishing. That story in the NY Times was quickly followed by another, about this doctor resigning from his job. That was perhaps predictable. It was less predictable that a new scandal at MSK would be unearthed just a couple of days later, though I did have the feeling the story hadn’t yet been told in full. 

In fact I still have that feeling, and wonder what investigations are now underway at MSK’s competitor institutions. It strikes me as unlikely that only MSK has been infected by the kinds of maneuvers that these articles reveal. After all, these maneuvers are presumably profitable, directly or indirectly, and health care institutions must be competing with each other to provide the best possible pay packages to their top employees. (They certainly are competing with each other to attract patients, as medical advertisements and hospital merger news attest.)

In any case, on September 20 it was revealed that senior MSK doctors or scientists and some board members, along with MSK itself, were the co-owners of an artificial intelligence start-up meant to use MSK’s immense library of accumulated tissue samples to learn better how to diagnose the presence of cancer. In the process, it appears, the people involved disregarded rules governing such "related party" dealing (which is not illegal in itself, but must be correctly structured). They annoyed other MSK physicians by using the results of those doctors’ research in analyzing the tissue samples without their consent. And  this venture turned the samples donated by patients towards the goal of research into potential sources of private profit that surely were never consciously consented to.

I don’t want to say that the issues posed by the duties of honesty, disclosure and frankness are always simple, as my earlier post on nondisclosure may have implied. Truth isn't always the commanding rule -- but it is an important rule, as the age of Trump underlines. Here, it appears that MSK could not get venture capital funding for a project it believed was very promising, and so the investors – as investors tend to do – took on some special risk in the hope of some special gain. That gain in turn would have benefited us. 

But at the same time this series of stories gives the impression that our major medical institutions have decided that the way to provide care is to find profit to support it, and that the task of finding sources of profit need not be undertaken with any over-punctilious concern for virtues like disclosure. What’s perhaps most troubling about the creation of such a culture of gain is that it undercuts the culture of cure that so many of the staff at institutions like MSK pursue with daily dedication -- including in my own case.

A Sad Footnote

While we were getting the good news I wrote about in my last post, another member of the cholangiocarcinoma community, Sarah Bennett, was entering home hospice and dying. Today, September 22, we went to her funeral, about an hour from our home in New Jersey.

Every death from illness is a matter of sorrow, but Sarah’s was especially so. She was the creator and guiding force behind the Facebook patients’ group for people with this illness, the Cholangiocarcinoma Warriors. This is a difficult group to lead, because the members are going through a very wide range of different experiences. Some are at early stages and can report successful treatment (a few can do so even at later stages); some are ill and suffering; some are dying. I personally felt guilty about reporting my own recent good news when I was aware that Sarah was rapidly declining. But the Warriors group under Sarah’s leadership set out to be a home for all these different people, as welcoming to those expressing confidence as to those feeling despair. Sarah accomplished this almost impossible feat largely by giving to the group her own tremendously strong commitment against the disease and its impact, and her close personal connection to all the group’s members. It was impressive and inspirational.

If the impact of this disease had anything to do with what people deserve, she would have beaten its onslaught, and would still be on the scene helping to inspire and remember other patients. I should add that I don’t say this to challenge anyone’s religion. Some of the members of the Warrior group do respond to events in their illness in very religious, mainly Christian terms; but some don’t. All are welcome. I don't know exactly how religious Sarah herself was;  certainly she could swear up a storm, and members of the group took that in stride too.

Deaths like hers are hard for anyone from any system of belief to come to grips with. Her eloquent family, however, brought her to life for us during the service, and we learned that in the course of the service and two days of visitation, approximately 1000 people had come to remember her. Some had traveled many hours to attend. That effort by so many reflects Sarah's exceptional contributions. And those must have gone well beyond the Warriors group, since there aren’t close to 1000 active participants in this group – cholangiocarcinoma is a rare disease. Nothing she did in her 35 years, however, seems more remarkable than the effect she had on this patient community during the four years that she herself fought against this disease, and helped so many others to fight their struggles too.

To our great sadness, she is no longer with us.