The Annual Meeting of the Cholangiocarcinoma Foundation

At the beginning of February, 2017 Teresa and I made our way to Salt Lake City for the fourth annual meeting of the Cholangiocarcinoma Foundation. (And we combined it with a trip to the Grand Canyon and to see relatives in Phoenix!)

The Foundation is an act of love. It was created by the survivors of a patient who died of cholangiocarcinoma, and a great deal of the organizing of the conference and of the Foundation’s activities seems to be done by those relatives and by other volunteers. It has done something that’s apparently about as rare in medicine as in other fields of human endeavor: it’s brought together people who might otherwise be competing with each other – doctors from different institutions with different perspectives on this disease and its treatment – and people who might otherwise be ignoring each other as much as possible – doctors and their patients – in a truly collegial gathering.

We met some people I’d only seen on the cholangiocarcinoma warriors facebook group – people who’ve had this disease for many years and are still fighting it hard. Several of these people told their stories in short sessions scattered through the conference. They were all the more inspirational because they weren’t simply happy stories. One of the speakers learned after the conference that she must have additional surgery. Another, a woman who seemed particularly well dressed for her presentation, had been in the emergency room just a few weeks before the conference took place.

We also met some scientists, including a very nice group of people from the University of Nebraska with whom we had lunch. They were interested in cell death. So am I, particularly in cancer cell death. It’s often said that cancer cells have escaped the various bodily controls that make ordinary cells die on schedule, but these folks said that cancer cells really want to die – they’re just blocked in various ways from doing so. I hope they’re right and that they can find ways to free cancer cells from their burdensome existence!

And we heard several presentations of pretty hard science. Hard, among other things, in the sense that it wasn’t easy to follow – especially if you, um, dozed off during some of what was said. (But for those of us in that category, the videos of the sessions are in the process of getting posted on the Foundation's page on Facebook.) It was clear that sophisticated work is being done in tracing the pathways of various processes of cell functioning. Pretty much anything that cells do is a potential weapon for cancer cells, but also a potential target for attacking them: how they get nutrition, how they avoid death, how they migrate from place to place in the body. So it was exciting to hear about the work that is underway.

And also a bit chastening, in various ways. There was the scientist who showed pictures of an autopsied liver, and commented that although scans of this patient had shown only discrete tumors, in fact on post-mortem examination it turned out that the whole liver was pervaded by cancer. Perhaps more important, even though there was obviously good work being done by good people, there weren’t a lot of these good people – all of us, patients, caregivers, and scientists, fitted in one mid-size hall – and there seem to be many disparate topics needing examination. The Foundation has generated resources and made grants, and more important sponsored a scientific community, but much more needs to be done.

Still, much is being done. The treatment I’m now getting, which is based partly on an effort to target a new mutation that has appeared in my latest tumor, is the kind of approach that has only emerged in recent years. My oncologist is part of developing this approach – and we talked with her at the conference. And meanwhile the efforts of the volunteers were truly heartwarming.

So, long live the Cholangiocarcinoma Foundation! We hope to join you in Salt Lake City for years to come!

My wife disconnects me from my Dosi-Fuser

This morning Teresa disconnected me from my Dosi-Fuser (described here) for the second time. Everything went fine, as it had the first time – but I thought the process might be worth describing.

It’s an intimate moment. Not that kind of intimate moment: I take off my T-shirt, but that’s as wild as it gets. But nevertheless it is an intimate moment. Things could go wrong. We have to work smoothly together. And what happens is that my wife injects me with stuff, and then pulls a needle, quite a thick needle, out of me.

So in more detail: I lie on the bed, minus my T-shirt. Teresa folds a towel and puts it on me, and on the towel she lays out the tools for the process. These include two injectors, one containing saline solution and one heparin (a blood-thinner); alcohol swabs; a bandaid; and gloves. Sloan Kettering sells us this equipment, which seems a bit unfair – they also don’t compensate Teresa for her time – until you consider the alternative, which is that all this would be done by Sloan Kettering at their office with greater expense and much greater inconvenience.

Then Teresa puts on a pair of gloves; this first pair can be non-sterile. With these gloves on, she opens all the packages that these tools come in and puts them back on the towel. Then she changes gloves; the second pair has to be sterile, and the sterile gloves come in their own package, nicely labelled “Left” and “Right.”

Then we’re ready to go. What am I doing? Well, two things. First, I try to keep Teresa’s iPad open to the page with Sloan Kettering’s very detailed instructions, and to scroll up and down the page as she requests – because she can’t touch it now that she has her sterile gloves on. Second, at various moments I hold part of the tubing while her hands are full with other steps. So far I’ve done okay with these two tasks.

Meanwhile, first, Teresa removes the tape that holds a sensor on my abdomen. The sensor’s function is to pick up my body heat, and based on that to instruct the Dosi-Fuser to continue to send the medication out through the tubing and into the port. Removing the tape hurts a bit; Teresa apologizes but it’s completely unavoidable – and that’s so even though Sloan Kettering already uses its “sensitive skin” tape on me.

After that she clamps one part of the tubing from the Dosi-Fuser shut. At this point, if there were any medication left in the Dosi-Fuser, it couldn’t get to me – but in fact I seem to run a bit fast, so the bottle’s been completely empty a few hours ahead of schedule anyway. (That’s okay.) Then, above that point in the tubing, she screws in the injector with the saline solution, and injects that, three pushes each sending about 1/3 of the total into me. Next she does the same thing with the heparin injector.

Now we’re ready for the actual removal of the needle. First Teresa closes a second clamp, so now nothing can get into me (though there’s also no longer anything attached that could go in). Then she removes the tape around the needle’s entry site. (More pain and apology.) Then with one hand she holds the base of the needle apparatus down onto me, and with the other she uses the attached handle to pull the needle out till it clicks into place. This is of course the most dramatic moment, and so far seems completely painless. And then we’re done, except that she gathers up the Dosi-Fuser itself plus the tubing and puts it into a container we supply. We’ll bring this back to Sloan Kettering at my next treatment date, and they can dispose of it as medical waste.

Oh, and one last thing: gauze and pressure on the needle site just in case there’s bleeding (there wasn’t any today), and then a bandaid. And then I’m free to take a shower for the first time in two days.

Thank you, my dear Teresa!

Trump and cancer

I subscribe to a medical newsletter called (naturally) Stat. Recently Stat published an article called “The show goes on: Trump attends controversial Dana-Farber fundraiser at Mar-a-Lago.” At the top of the page was a photograph of Brian Mulroney, former prime minister of Canada, talking to President Trump at this fundraiser, which took place on Saturday, February 18, 2017.

Here’s the gist of the controversy: “While the Harvard-affiliated Boston hospital [whose full name is the Dana-Farber Cancer Institute] has held the posh annual event at the private club since 2011, and in 2008, this year’s gala drew criticism from Dana-Farber’s staff and Harvard medical students, who saw Trump’s actions, especially his executive order on immigration, as in direct conflict with the hospital’s mission. Dana-Farber declined to cancel, saying it was too late to change plans, but said it would avoid ‘controversial venues’ in the future.”

Surely the “hundreds … of students and doctors who advocated for Dana-Farber to relocate the fundraiser” were right about one thing, as a fourth-year medical student put it: “You can’t say you’re staying out of politics while simultaneously holding your fundraiser at Mar-a-Lago.” The proof of this proposition, this student argued, was Trump’s appearance at the party – captured in the photo heading the article.

But who ever said that cancer fundraising was somehow out of politics? Quite to the contrary, Sidney Farber himself was deeply involved in politics, as he and his allies marshalled government support for cancer research, a story told in detail by Siddhartha Mukherjee in his book The Emperor of All Maladies: A Biography of Cancer (2010). How could it possibly be otherwise? The cost of cancer research and treatment is immense; politics is inevitably going to be involved in meeting that cost.

Now one might say, as the protesters did, that Trump’s actions, “especially his executive order on immigration, are in direct conflict with Dana-Farber’s mission.” The report doesn’t explain exactly what the protesters meant by this, but as Teresa reminds me, quite a few of the doctors who are working on my particular cancer, cholangiocarcinoma, happen to be foreign-born. In general, I’m sure that reducing the immigration of talented professionals will hurt U.S. health care, and meanwhile forcing illegal immigrants into the shadows is bound to hurt their health, burden emergency rooms, and, in short, conflict with Dana-Farber’s, and every other cancer treatment center’s, mission. And then there’s the impact of the Republicans’ brutal proposed replacement of Obamacare, which wasn’t yet public when Dana-Farber held its fundraiser.

But it seems obvious that in other respects holding the fundraiser at Mar-a-Lago was also, either directly or indirectly, in support of Dana-Farber’s mission. The fundraiser earned $2.2 million. It also – or so we might infer from the photo – engaged the President with Dana-Farber’s work, and gave him a sense that Dana-Farber was the kind of institution that was compatible with his club, one he clearly is proud of. To an extent that’s hard to measure, Dana-Farber’s choice of location gave them the possibility of having the President of the United States feel that he and Dana-Farber were on the same side. But if Dana-Farber henceforth stays away from Mar-a-Lago, obviously that benefit will fade away – perhaps abruptly, given the President’s well-known capacity for resentment.

So was Dana-Farber obliged to sacrifice some possibility of a positive connection with the President? Suppose the result of its doing so will be, in some modest degree, to diminish the likelihood that the President will support cancer research and federal funding for that research? And suppose that this decision will also, in some modest degree, weaken the political effort to sustain the nation’s fight against cancer over the next four years?

Quite possibly the answer is that these costs to the fight against cancer must be accepted because it is just unacceptable, at this moment in our history, for anyone committed to serving the public interest to try to collaborate with President Trump. I admit I don’t look forward to the 4 years (or 8?) of nonstop conflict that this conclusion may contribute to, but it may be necessary.

But what’s most striking to me about this fundraiser is that it reminds us of how pervasive the President’s influence is. Almost everything Americans do in some way is helped, or hindered, by the White House. And as Teresa also reminds me, now this impact isn’t just institutional but personal: Trump owns Mar-a-Lago, and any number of other sites and products, all of which those who seek influence must now choose either to utilize or not. It’s all Trump, all the way down! And for me, as a cancer patient, it’s become worryingly personal, in a way that politics hasn’t been for a long time.