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.

Passing My Tests

On September 7, I had two more scans, meant to determine definitively what the effect of my summer’s radiation treatment had been. I’d had one earlier post-radiation CT scan on August 21, but that was meant to make sure that the various side effects I was feeling were in fact side effects rather than something else. These two were focused on whether the radiation had been successful against my tumors – the critical question.

Why two? Because the two scans had overlapping functions. The CT scan looks for actual physical masses, such as tumors. But even if you find a mass you don’t necessarily know what kind of object you’re looking at. The other scan, the PET scan, doesn’t look for physical masses but for activity: if the scan picks up signals of “avidity” – essentially, high consumption of energy, which is characteristic of cancer – that’s a bad sign. What you especially don’t want is for the scans to coincide, as they do if the CT scan finds suspicious physical spots and the PET scan finds those spots fit with cancerous energy consumption.

My scans have now been read by three MSK physicians (and by Teresa and me). They’re pretty technical documents, so we needed the doctors’ translations. But in another way they’re also pretty simple: that is, if the scans are good the doctors are pleased, and if the doctors are pleased then we’re pleased.  All three doctors were pleased; in fact, I think it’s fair to say they were all very pleased. And so we are too!

What the scans showed was first, that all the tumors MSK was attacking with the radiation were now smaller. They hadn’t disappeared, but they were smaller. Second, the signs of extra hunger in the locations of those tumors had also largely disappeared; energy consumption in those areas was now roughly the same as in the normal, unaffected parts of my liver. And, third, the only instances of either physical locations or energy consumption that were at all out of line did not coincide with each other, and so the doctors weren’t worried by these.

In short, the doctors just weren’t worried. The radiation, delivered by the latest techniques so as to give my tumors a high and lethal dose, appears to have done just that. So what do I do now? The answer is: nothing. My next scans are in two or three months; between now and then I won’t receive any treatment for cancer itself, and if the next scans are similar, that will continue.

I should add that though I have no cancer treatment scheduled now, I will continue to have treatment for side effects, such as stomach problems and intense fatigue, and for the side effects of the side effects medicine. Sigh. It was because of possibilities like these that I had yet another scan on September 18. As readers of this blog will recall, one night some weeks ago I had trouble staying upright as I went for a walk, and I’ve also felt from time to time that I’m losing track of my own arguments in conversation. 

With those in mind I had a brain scan. This is an interesting experience in its own right; as the patient, your head goes into a helmet/camera lens which looks a bit like the helmets worn by the evil Empire soldiers in the Star Wars movies, and then you spend 30 minutes being motionless while they scan your brain. The idea of anything out of place in your brain is scary, of course, but the radiation oncologist told us in advance that these scans are usually given to rule out possibilities rather than because the doctors expect to find trouble, and happily that turned out to be the case for me: there’s nothing going on inside my brain except the usual, flawed as that may sometimes be!  I think the moments when I don't seem to be functioning as acutely as I want to are expressions of the fatigue that the radiation has caused me.

Finally, as to my prognosis, I specifically did not ask the doctors to give it a number, and they didn’t, but what the radiation oncologist said is that my prognosis depends on what if anything emerges next; what I already had has been so thoroughly attacked, it appears, that it is no longer a factor. This isn’t quite “NED” – No Evidence of Disease, the modern phrase that doctors use instead of “in remission.” But it does appear to be the next best thing, which I’ll make up: “NEAD” – No Evidence of Active Disease. We certainly didn’t count on achieving this state of affairs back in November 2015 when I was first diagnosed with this insidious, but as we’ve learned not all-powerful, cancer. I’m very grateful to MSK and to Teresa, and others, for all the help they gave me in getting to this point.