Disclosure and truth

Over this past weekend, on September 8, 2018, the New York Times revealed that a senior Memorial Sloan Kettering cancer doctor had not filed disclosures of financial connections to his research – even for articles in a journal of which he was at the time an editor. Sloan Kettering for its part initially said that such disclosures were the responsibility of the scientist and not of the institution, but the next day, September 9, it effectively revised this position and issued a reminder to all its staff of "do[ing] a better job" of complying with these rules.

Well, they are rules and so as a matter of general principle they should be complied with. No one is immune from financial temptation and in fact a lot of money is in play in cancer research and treatment, so there is good reason to require the disclosure of the movement of that money from corporate sponsors to individual scientists. (It has to be said, also, that the disclosure system as described by the Times does not incorporate very strict enforcement procedures; being obliged to meet disclosure rules still does not seem to be accepted by the medical community as truly integral to their work.)

But complying with these rules is not just a matter of avoiding financial problems and temptations. The fact is that a lot of medicine depends on truth. Doctors are expected to give their patients accurate statements of their situation; there may be exceptions to this rule but they are controversial exceptions, not the rule. And on the other hand patients are expected to be truthful with their doctors. That’s partly a matter of self-interest: the patient who doesn’t tell the doctor about drugs she is taking, or behaviors she’s engaged in, is risking her own health being damaged by unanticipated side-effects of either one.

But not all disclosure by patients is directly for their own good. Clinical trials carefully select the patients whom they will admit for treatment. A patient who reveals a disqualifying fact has just lost his best, possibly his only, opportunity to get an experimental treatment. Why is this sacrifice exacted? For the sake of science: the experimenters need to know who they are treating so they can measure the significance of the results that they get. 

The patient’s sacrifice is all the greater if the clinical trial design is not truly motivated just by science, but instead is part of a carefully calibrated effort to generate results that will in turn lead to the approval of some use of the experimental medication that the trial sponsor will market. Then the patient’s truth telling may in practice have as much benefit for the health care company's profits as for scientific understanding. But we live in a world where private motives of one sort or another have a lot to do with the generation of knowledge; this world is imperfect but productive, and so we apply the duty of truth to patients seeking admission to the trials that our imperfect world generates.

What we have, really, is a social contract that means to call on all participants in the health care system to act truthfully. But a social contract that only one side honors is a flawed contract. (I suspect some patients decline to honor their side of the contract too; their need is more immediate and personal than the doctors', and there must come a point at which the individual’s desire for life outweighs his or her obligations to the social contract, but in principle patients too are bound by this mutual agreement.) Physicians and patients need each other’s adherence to this contract, and that means the duty of disclosure and truth runs both ways.

Some treatment surprises

My recovery from the radiation treatment is still a work in progress. It seems to be, fundamentally, a work that really is progressing – earlier this week Teresa and I reviewed the newest CT scan report and learned that it appears to show that my tumors are by and large stable or smaller. This particular scan was done because of my recovery side effects, and actually is premature in terms of assessing the true impact of the radiation on the tumors, so there is still plenty of room to hope – as I do – that more improvement in the tumors themselves will show up on the final scan.

That said, matters have also been more surprising than I’d anticipated. I have a lot of not very startling side effects, but cumulatively they are a bit of a burden. For example, as I’ve mentioned already, I’m tired, sometimes so tired that nothing but an afternoon nap can restore me. I’m also not sleeping very well, and that may have something to do with the fatigue and also with another symptom: persistent leg cramping that I’ve been experiencing, and that so far Sloan Kettering really can’t explain. (Lack of magnesium causes cramping but I don’t appear to be low on magnesium.) As usual, I have any number of drugs to take to make sure my digestion keeps functioning smoothly; these address all aspects of my digestion, from “stool softening” to water loss, and I suspect that to some extent they all complicate each other’s operation.

But the most startling events took place on Saturday night, August 25. That night I went out for a walk. As I walked, however, I noticed that I had begun tilting – literally, physically, tilting – to the right. I also began to feel more indigestion. By the time I had done most of my walk, and gotten within two blocks of our house, I felt I couldn’t continue on, and Teresa had to come and pick me up. Even getting in the car wasn’t easy. (A nice woman living at the corner where I’d come to a stop got me water to drink; fortunately, the next evening I felt easily well enough to stop by her house to say thanks.)

What was going on? One possibility is that I was simply feeling suddenly and intensely off kilter digestively; that would make sense because I had just recently started taking another drug, lactulose, which I’d been told could give me diarrhea.

The second possibility is connected to the first: I was taking this new drug because the level of ammonia in my brain had risen beyond its acceptable levels, though not far beyond them. Ammonia can cause things like difficulty walking, and I hadn’t yet had a chance to get the extra ammonia out of my system with the new medication. Possibly I also had some degree of “chemo brain,” a term I don’t like but that I’m afraid has real physical content, and must be included on a list of potential, physical (not just psychosomatic) side effects of cancer treatment. Of course it was scary to think that I had ammonia or anything else in my brain, where it’s not supposed to be, and where besides impairing my walking it may also have impaired my focus and cognitive functioning. Presumably it got there as another side-effect of the radiation treatment. But in any case I’m relieved to be able to say that I am feeling far better now.

That in turn fits with the third possibility, which is that somehow momentum began to run against me; that I wasn’t really in such bad shape but had gotten into a pattern that I couldn’t readily shake. This idea, I admit, is hard to explain, but that’s at least partly because what happened to me on Saturday night is hard to figure out too. So, perhaps, I somehow fell into a pattern in which I couldn’t walk without tilting. Maybe I had bruised my hip? I didn’t know how to bring myself out of it, but 12 hours after Teresa had taken me home, I felt better. So if there was a pattern, it’s now been shaken. I still feel a bit stirred, but otherwise okay. (That’s a joke, dear readers: James Bond wanted his drinks shaken but not stirred.)

This was, all in all, somewhat more reality than I actually wanted. Fortunately it seems to have been an incident, of somewhat unexplained origin, rather than a transition to a new stage altogether. So I am focusing now on resuming my walking – not so easy in a heat wave – and continuing final work on my book – which is coming along, step by step, but there are still a lot of steps to be taken – and in general keeping my various drugs, and their side effects, under control. Thanks to the dedicated staff at Sloan Kettering for all their help in these efforts.

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I want to add to this piece my condolences to James Grimmelmann, a former member of the New York Law School faculty, for the death of his mother, Jan Lewis. I did not know James’ mother well, but I knew that she consistently supported my wife and me over the years of my illness; Teresa knew Professor Lewis from Rutgers, where Professor Lewis taught for many years and built an outstanding record of thoughtful achievement. Teresa and I were both shocked to learn the recent news that Professor Lewis died at Memorial Sloan Kettering, after a fight against what must have been a sudden, fierce attack of cancer. We are thinking of her and of her family at this sad time.

An update

Some of you may be wondering what’s up with me, and I don’t want to leave you in suspense – though the answer is that not much is actually going on.

It’s now three weeks since my radiation treatment ended. In about a month I’ll have a CT scan and a PET scan, and then they’ll know what the treatment has accomplished. Why the delay? I believe I’m in the process of waiting for my liver to settle down enough from the impact of the treatment so that the doctors can tell what’s really going on. In the meantime, again, nothing very dramatic is happening.

One thing that is interesting is that I’m still having side-effects. “Still” isn’t quite the right word; I think my side effects – though pretty modest – have increased over the weeks since the end of the treatment. This doesn’t seem to be unexpected. Radiation is a blow to the body, and its effects, and the body’s reaction to them, apparently quite often only emerge over time. Probably my side effects were also somewhat increased by the chemotherapy I had every day along with the radiation; if so, that too should tail off since the chemotherapy ended the same day as the radiation did.

So I’m more tired than I used to be, and more prone to getting out of breath; all of this is fatigue, evidently, and according to the patient education brochure MSK gave us when this began, fatigue “can last for several months.” I also have a patch of irritated and itchy skin on my back. I never did quite figure out whether the radiation was all going into me from my stomach side, or whether as the machine’s components whirled around me it was giving me doses of radiation from underneath, through my back, as well. Either way, something about this process has disagreed with my back. Skin issues, MSK told us, “often take… 3 to 4 weeks” to resolve. And my bloodwork is off in various ways, most clearly with respect to my platelets, which promote blood clotting. Mine are well below normal. That means I bruise easily, and as a result I have various purple spots here and there; my body is more colorful than usual! Meanwhile, of course, one should never forget one’s bowel regimen; mine continues.

All that said, I’m basically fine. I’m receiving no treatment right now (except a steroid via my pump, since my liver seems to appreciate a steroid infusion), It’s a little surprising not to be getting treatment, but it will be great if it turns out that I don’t need any treatment for some time to come.

Radiation treatments complete!

At Memorial Sloan Kettering, when you complete a course of radiation treatment you're encouraged to ring a bell in the radiation oncology hallway to celebrate. So yesterday I finished my 15 days of radiation, and rang the bell. We have a video, but I haven't figured out yet how to post it here and get it to play, so in the meantime here are two still photos: the top one is of me and the bell (which by the way is nice and loud when you give that rope a good tug), and the bottom one is of a celebratory cupcake, shared with Teresa, the photographer, a little later yesterday afternoon. 

As for the treatment itself, it's superbly high-tech and as beams of radiation fly through you -- hopefully stopping to destroy your tumors -- you don't feel a thing. My main concern as the treatments took place was to stay as still as possible, while breathing just as instructed, none of which is as easy as it might sound. 

Your body does know that something is happening, however. I'm more tired than usual now, and this may continue for a couple of weeks. Meanwhile, the bottom of my right foot is a bit painful; this particular symptom may not be due to the radiation, though, but rather to the accompanying chemotherapy pills, Xeloda (also known as capecitabine), which softened the tumors up for the radiation. These and related symptoms aren't negligible, but they're certainly not very bad either -- especially not if what I get in return is the destruction of all my active tumors. We'll know if that's what's happened in a couple of months when I get my next scan.

Incidentally, the next scan isn't actually scheduled yet. The reason isn't a scheduling problem, but some kind of insurance issue -- again. I'm guessing that this one is the result, somehow, of my having switched insurers in the middle of the radiation treatment, and I'm assuming that it will be resolved soon and simply -- I hope that's right! 

One last note from the radiation process, and from the aging process: when I chose music that would play during my treatment, the young radiation staff person I discussed this with had never heard of Linda Ronstadt or Crosby, Stills, Nash & Young. I hadn't heard of some of the music she liked either, but that really only confirmed how dated my musical tastes have become. Fortunately she had a relative who liked Bob Seger, so we were able to find some common ground!

Getting irradiated

Insurance aside, radiation treatment deserves attention in its own right. Even after MRI’s, CT scans, and a PET scan, radiation still strikes me as the most science-fictional experience I’ve had as a cancer patient.

The basic problem with radiation is also its strength: radiation destroys cells. If it hits cancer cells intensely enough, it's likely to destroy them. If it hits healthy cells intensely enough, it's likely to destroy them too. (Incidentally, this doesn't have to be done just in one session; the doses add up, which is why my treatment will consist of 15 separate sessions lasting till mid-July.) So the job of radiation treatment is to find a way to concentrate as much as possible on the cancer cells while sparing the healthy cells nearby. In my case, that means sparing both the healthy parts of my liver (still chugging away with blood test numbers almost entirely back in the normal range). It also means sparing the important organs nearby, notably the stomach and the intestine.

There seem to be two basic ways of making sure the radiation hits just its true target, or rather does so as much as possible -- absolute perfection doesn’t seem to be attainable. The first method is by very carefully shaping the radiation beam; the second is by making sure the beam is as precisely aimed at the tumors it is meant to target as possible. 

As the patient, I don’t have anything to do with shaping the radiation beam. That’s a technological feat that the machinery is designed for, and the operators of the machinery carefully manage. 

The basic idea, as explained on a National Cancer Institute website, is to deliver beams of radiation from many directions, so as to “conform[] to the shape of the tumor” – hence the name “3-D conformal radiation.” Further refinement of the shaping of the beam can come from a version of 3-D conformal radiation called “intensity-modulated radiation therapy” or IMRT; again according to the National Cancer Institute website, “IMRT uses many more smaller beams than 3-D conformal and the strength of the beams in some areas can be changed to give higher doses to certain parts of the tumor.” Finally, in stereotactic body radiation therapy (SBRT), the same website explains that “many small beams of radiation are aimed at the tumor from different directions. Each beam has very little effect on the tissue it passes through, but a precisely targeted dose of radiation is delivered to the site where all the beams come together.” My understanding is that IMRT and SBRT are overlapping terms, and that they describe what I’m receiving.

All that, again, is the work of the machinery and the medical staff. Meanwhile my contribution is to assist with the aiming of all these beams. My assistance isn’t very dramatic: my assignment is to lie in a mold that was prepared at my “simulation” session three weeks ago and that holds me in a particular position, and then to follow instructions meant to get my position even more precisely set. I start my assignment by lying down on the narrow table where I’ll be during the radiation. Then the medical staff take over; at this preparatory stage I'm supposed to be a dead weight, and not try to help the staff, who will move me to exactly where they want me.

Then my job is to breathe. This is a lot harder than it sounds. Most of the radiation seems to be sent my way while I hold my breath; that’s because breathing itself moves the organs inside you quite a bit. But naturally people hold their breath to different degrees at different moments, and the radiation staff want me at exactly the right point. So I take a breath, then they tell me to let just a little breath out, then a little more, then breathe in just a bit … and then, when I’ve got just the right amount of breath in me, they start the actual radiation. Only by then I’ve already used up quite a bit of the oxygen from that first breath, and now I don’t get to breathe again till they’re done! Two or three times they took me right to my limit, with my chest beginning to shake as I needed more and more urgently to breathe. I wasn’t sure whether that would be an aiming problem itself, but they told me afterwards that I’d done a good job – so I hope they got the targeting they needed. I also hope I’ll be a better breather today (Monday, June 25), when I go for my second session.

But I haven’t yet said what really seems so futuristic about this process. I lie on the table, with a linear accelerator behind me that’s producing the radiation beams. (A linear accelerator!) Meanwhile three lenses, all quite large – maybe two or three square feet – revolve around me. I wasn't quite sure where they were coming from or going to, because I was in the body mold on the table and could only look up, but it appears that the group of lenses can revolve at least part way under the table on which I’m lying. The whole apparatus looks something like this picture (which happens to be of a Varian Medical Systems machine -- I'm not sure which brand Sloan Kettering is using):

One of these lenses, perhaps the biggest, is round (you can see it near the top of the photo). The round lens is the source of the radiation beams and has cross-hairs embedded in it that I think are used for targeting. There are also laser beams, apparently coming from the walls of the room, that help in the targeting too; I’m guessing these are aimed at the tattoos that I was given during the “simulation” session. 

The other two lenses are rectangular and are used for taking x-rays as the process goes along, to make sure that everything looks right inside me. (They're visible sticking out on the sides of the machine in the picture.) There was a moment during my first session, this past Friday, when everything paused, while the doctor reviewed the images they had so far, I guess to make sure that in fact everything did look right. Fortunately it did, and then my actual treatment started. In the future, I think the treatment will get underway at once, so the whole process will be quicker, maybe 20 minutes of actual time being treated per day. 

The lenses revolve very near me – the medical staff assured me that I would never actually be hit by one, and this proved to be true, but they’re still really close – and they do so quite silently. Meanwhile I’m listening to music; they told me I could choose anything and I had a good time with Beatles songs I hadn’t heard in years. So as I’m working on being a good breather these big lenses are quietly revolving around me, and it looks like something out of 2001.

And I say: great!