Cancer and money

At Memorial Sloan-Kettering (MSK) the question of money rarely comes up – but not because it isn’t an important question. From what we’ve learned so far, MSK is prepared to back up its medical judgments by paying for treatment that it considers necessary even if an insurer refuses to pay for it, and it also covers the costs of treatment for patients in its clinical trials. These are the kinds of decisions only a well-funded, and conscientious, institution can make. But even though MSK’s fundraising must cover some of its costs, it’s in no position to provide care without charge.

My care so far has come partly from New Jersey providers whom I saw before we went to MSK, and partly from MSK (plus an emergency room visit during my first week of chemotherapy). The total charges up till now are well over $26,000 – all accumulated since the end of October, 2015. Actually I think that number may be low; the bills come quickly! Fortunately, very fortunately, my insurer (Cigna) has covered almost all of this – often by paying discounted rates far lower than the original charges.

Of course these bills are going to go up and up. The providers have to be paid, and few people without health insurance will be able to pay. I assume that people whose health insurance is limited will be in difficulty as well. If you are fortunate enough to have good health insurance – for example, as my wife Teresa has pointed out, if you’re part of a public employee union that has successfully negotiated for this benefit – then you may have ready access to institutions like MSK. But if you have, for instance, a “bronze” plan now available on the Obamacare www.healthcare.gov site, you may face potential uninsured spending of up to $13,700, a lot of money. My own plan, through my employer, is not unlimited, but I’m very grateful for how inclusive it is. It’s really expensive, for individual patients and for society as a whole, to have cancer.

One more obvious point about cancer and money: The people in the waiting room at MSK are a diverse group, but they are not as diverse a group as the people of the New York area. There seem to be fewer African-Americans; probably there are fewer low-income people of any race. Those who aren’t there are probably absent partly because of the cost of treatment and of insurance. Perhaps they are also absent because of the whole network of personal connections, support and resources, the personal capital, that lead some people to reach for the care available at institutions like MSK while others do not.  (All of these factors also play out geographically; it is a great advantage to live near a leading cancer center.) None of this is really surprising; in a society as shaped by inequalities of wealth and race and other factors as ours is, every social good including medical care will be unequally distributed too – despite the best efforts of the dedicated physicians and others who make up our medical care system.

Being called into the chemotherapy treatment suite

Naturally each step in the chemotherapy day may feature some waiting. I’ve already written about the Memorial Sloan-Kettering (MSK) waiting room, but the moment the waiting ends also is worth discussing.

When the time for your chemotherapy session arrives, the call doesn’t come over a loudspeaker. Instead, you hear a voice calling your name. You look up and see, typically, a young and friendly face scanning the room. You wave, this person comes over, and he or she escorts you and your companions to the chemotherapy suite. Usually the escort has a smile and some friendly chat to make the transition as pleasant as possible. I think it works well, and that, like many features of the treatment process, it reflects careful thought by the people at MSK about how to make the patient experience as supportive as possible.

But it does raise a couple of questions about privacy. Obviously, when your name is called in a roomful of people, everyone there hears it and can put your name and face together. For some people – celebrities of one sort or another – that might be a real breach of privacy. My guess is that there are special procedures that can be arranged so that people who are really objects of public fascination make their way to treatment unannounced.

Still, what about the rest of us? I think the answer is that our privacy is protected pretty well, by three things. First, we’re all pretty anonymous (the celebrities having been taken care of in some special way). Second, most of the people in the room are more concerned with their own or their loved ones’ situation than with who else might be in similar straits – so they’re more focused on waiting to hear their name than on who else might be getting called. Third, I think there is a fellowship of cancer patients. We share a misfortune, and the nature of the room means that we, inevitably, recognize each other as people with a major illness. That we share, but only with each other, and it would be a breach of that shared fellowship to tell people outside the room.

I imagine that MSK thought about all this too – and concluded that the modest risks to privacy were outweighed by the benefits of the personal touch and the smiling face that patients encounter when they hear their name called as they do now.

In the chemotherapy waiting room

We register, and then we walk a few feet past the registration area into the waiting room. It’s a large area, perhaps 30 feet wide and 70 or 80 feet long, with couches and chairs arranged to provide lots of little areas which you can feel you’ve made somewhat your own for the duration of your wait.

When we arrive, early in the morning, the room is quite empty. By later in the day, it gets pretty full, and that makes sense, because there are about 20 separate chemotherapy cubicles, and the actual process of receiving a chemotherapy infusion takes (at least in my case) about 3 hours. So in a day that begins around 7 AM and ends around 6 PM, it’s probably possible for 3 patients to get infusions in each of those 20 cubicles: perhaps 90 people every working day, just on this one floor of Sloan-Kettering.

There’s another difference between early morning and mid-afternoon, or at least it seemed that way to me one afternoon when we spent a long day there: by mid-afternoon there are more people waiting who are obviously very, very sick. Cancer, I’ve been realizing, is quite unlike the usual diseases of daily life: when you get the flu, you lie down until you’re better; but when you get cancer, if you’re fortunate, you don’t lie down. You continue with as much of your normal routine as possible, even though you are actually much sicker than if you had the flu. But of course cancer can ravage its victims, and my impression was that more of the people who have really been through a wringer are in the waiting room later in the day. That too would make sense: it probably takes these patients, and their caregivers, longer to handle all the logistics of getting to their appointments, and their appointments are set up with those logistics in mind.

But while 90 patients are having chemotherapy every day, the waiting room is large enough to hold something like that number of people at any time. The reason the room is so large is that few people go to chemotherapy alone. Cancer treatment, it turns out, is a social process. There are exceptions, certainly, people who come alone and people who come planning to work, and the waiting room offers a few desks at which people can work if they’re so minded. But most people seem to arrive with family members (and some, I know, with friends).

There are medical reasons for this, certainly. Actually getting chemotherapy is (at least in my experience so far) uneventful, but it’s a long day and it’s a great help if someone else is there to help you get home. There may be important conversations to be had with the medical team, moreover, and a spouse may be able to report on symptoms, or aspects of symptoms, that the patient would miss. Sadly, that must be increasingly true the more weakened the patient becomes.

But I don’t think the medical reasons are the full explanation. It seems to me that most people with cancer naturally want the company of their family or friends. The disease is so formidable that it is good to be with the people you love and trust.

At the same time, my impression is that the groups that form – the patient and his or her companions – are rather subdued. Again, there are exceptions. On our first day at MSK, for instance, we sat near a man who was engaged in nonstop cellphone conversations. In a later visit, we watched as two patient/family groups began talking with each other – though it seemed to us that the patients in each group were the quietest, while their companions were chatting vigorously. But by and large it seems to me that each little group sustains itself, whether by talking or simply being together, but quietly.

The room itself lends itself to this. The main decoration in the area is a metal sculpture or screen dividing the registration area from the waiting area. The design of the screen is of a tree, and the screen also includes words (from Ezra Pound, my sister Maud tells me): "I stood still and was a tree / within the wood / knowing the truth of things unseen before". Those suggest reflection, quiet, even solemnity. And the room as a whole does too: patients are not in despair, and they are not alone, but they and those with them face something very profound.

PS: But there are some exceptions! Yesterday the waiting room was full most of the time we were there, and some people were talking vigorously -- and in the chemotherapy cubicles on either side of us folks had a lot to say, including one patient who was working his cellphone at length. Fortunately I slept through most of this.

On the way to chemotherapy

Like any other human process, chemotherapy consists of a series of steps. New patients have to get the hang of these steps, and once you do that you have a measure of security and assurance. But as a new patient you're both participant and observer, and it turns out that the particular steps that you find yourself taking also tell you a lot about the world you're now a part of. So I'll try to trace these steps here, and to say something about what those steps reflect, about cancer and cancer treatment.

When we arrive for chemotherapy, the first step is to check in. Actually that leaves out a step: the trip upstairs on the elevator. I was startled the first time we arrived because all the elevators have a seat in one corner -- a welcome sign that the people who planned the physical space were thinking about the condition of the people who'd be using it, but also a troubling sign of how frail some of those users might be or might become.

But the elevator isn't quite the first step either. The first step, if you arrive as early in the morning as we try to, is a brief wait on the first floor till the treatment floors open at about 7 AM. We wait in the Laurance S. Rockefeller Pavilion, a quite pleasant space with seating for 15 or 20 people and a small water pool on one side into which people, including me, toss coins for luck. It's not a surprise to find a Rockefeller's name on the wall; I imagine that Memorial Sloan-Kettering (MSK) does vigorous fund-raising, and there are donor names elsewhere in the building as well. The building we go to is in the East 50s in midtown Manhattan; this is expensive real estate, and every element of the massive treatment program running in this building is expensive as well. So many people get cancer; so much money is spent on the fight against it.

In any case, after the pause downstairs and the trip up in the elevator, we reach the fourth floor, where my chemotherapy takes place. This floor is focused on gastrointestinal cancer, so I imagine there are others floors, perhaps in other buildings, for people with different cancers to receive their treatments.

We arrive at the registration desk. Registration is generally quick, and the people behind the desk are responsive and friendly. I'm asked to confirm my name and my date of birth, and that's it. 

It's not just good fortune that the registration process is easy. As with the elevators, it seems clear that someone has thought about how to make the patients' experience as pleasant as possible. And something more -- someone has hired staff, and trained them, to be attentive and efficient. That takes institutional commitment, as well as good individuals, and it's reassuring.

Why do they ask the patient to confirm his or her name and birthdate in particular? We learned the first day we went to MSK that this process is repeated a lot  -- when you go to have a particular procedure done, or when your medication is being started, or after a procedure is over. It's easy to see and appreciate the logic of this procedure, which helps insure that each patient gets only the treatment he or she is supposed to have. (Long ago, in a university health clinic, a staff person called out "Stephen Ellmann" and a person sitting near me stood up. It turned out we shared not only the name but even the extra "n" in Ellmann. So I know this isn't a hypothetical problem.) But there's probably also another, worrying purpose: to measure the mental status of the patients, who may be fragile enough to be disoriented by some of the processes they go through.

And then, having checked in, we go and sit down in the waiting area. More on the waiting area in a future post.

Chemotherapy is not routine

I don't mean these blog posts to be just about my own medical details; I'd like to give a picture of the world of cancer treatment as I'm seeing it, rather than just recite the latest developments in my treatment. But I'm going to postpone the big picture posts, because this week's developments have caught my attention. I suspect it's very easy to become preoccupied with details like these, and want to resist falling into that, but still this week's story seems worth telling. 

Two days ago I had my fourth infusion. My older son Brian, my wife Teresa and I all went. After three previous sessions I felt like a veteran, and the week between the third and fourth infusions had been relatively easy. So we expected this session to be fairly straightforward too.

We drove in to Manhattan – we start before 6 AM, which definitely doesn’t make us the only people on the road but does enable us to reach the far side of Manhattan in about 45 minutes – and started on the usual process, which begins with blood testing. After the blood testing we waited, because in order to beat the traffic we’d arrived well before my scheduled chemotherapy time. So when we got to the chemotherapy suite – which actually consists of about 20 rooms or spaces, typically separated from each other by curtains rather than walls (so not terribly private) – it was well after 9 am and we’d already been going for several hours.

Then the RN who would be handling the actual chemotherapy process arrived and told us that my white blood cell count was below the lower parameter set by the oncologist for my receiving treatment. That potentially meant I wouldn’t be able to have the infusion – and also meant that my immune system had been weakened. (Meanwhile, coincidentally, the RN came down with a cold more or less before our eyes; from then on, when she came back to our space, she wore a mask.) 

When we later looked at the blood work charts ourselves, it was clear enough what had happened. The chemotherapy is expected to weaken your immune system and sure enough, week by week, it had. The break I’d had after the first two weeks had helped restore some of my white cells, but not enough, so when the third infusion hit, I was starting from a lower point than I had in week one, and the third week’s impact took me below the doctor’s limit.

What to do? I didn’t want to miss a treatment, and apparently that made some difference to the doctors’ thinking. What they decided to do was to go ahead with the treatment, and then send me the next day (that was yesterday, New Year’s Eve, and apparently took a lot of scheduling effort behind the scenes) for an injection meant to stimulate my bone marrow to produce more white blood cells. But that injection itself can have side effects, and for those side-effects two different Sloan-Kettering people suggested that I take Claritin D. They both said there was no scientific evidence that Claritin D would work, but that many patients said it did. So now I’m taking Claritin D, as a modern folk remedy. And I’m taking it to counteract the side-effects of another drug that I’m taking to counteract the side-effects of the chemotherapy. There’s a lot going on!

Meanwhile, after the chemotherapy we had one more stop to make, for an ultrasound of my legs. The ultrasound wasn’t a surprise; my right calf muscle had been stiff for several days. I hadn’t known what to make of this, but finally called it in to the medical team the day before the chemotherapy, and they, probably out of an abundance of caution, decided that after the infusion I should go upstairs one floor for an ultrasound. Which was the right choice, because it turned out I had a blood clot in that calf (but only there, which of course is good). 

Having a blood clot means going on a blood thinner to help break up the clot – and I’m dismayed that I’m now taking one of those drugs that are so depressingly advertised on TV. A blood thinner also means I have to be careful about getting cut or getting bruised – marking the end of my NFL aspirations. Why do I have a blood clot? The nurse from the medical team said that people with a cancer diagnosis have more frequent blood clots than others; I’m not sure whether that’s the result of the cancer itself or of the chemotherapy or some combination of the two. But I take it I’ll be on blood thinners now more or less indefinitely.

None of this is particularly bad. And all of it the medical team was ready to deal with. But it was certainly more than the three of us had expected as we went into town on Wednesday morning. And it taught us all a lesson: chemotherapy is not routine.

My cancer diagnosis

On November 25, 2015 I learned for sure that I had liver cancer. Actually this had been pretty clear for a week or two already, but that was the day my wife Teresa and I received the biopsy result. The biopsy confirmed the evidence from an ultrasound and two CT scans that I had cancer, and also enabled the doctors to tell us what type it was: cholangiocarcinoma. This particular cancer, a very rare one, comes from the bile duct; the bile duct, as I’ve now learned, is not just one large pipe for delivering the bile to perform its functions elsewhere in the digestive system but an entire network of capillary-size uptake tubes pervading the liver. I have growths in different parts of my liver, which means I have stage IV cholangiocarcinoma. But at the same time the various scans have not found that the disease has escaped the liver and lodged anywhere else, and so on the scale of stage IV’s, I am not at the upper (worse) end.

The doctors at Memorial Sloan-Kettering concluded that what I needed was to start chemotherapy without delay, and I had my first infusion on December 4, the day after my last class of the fall semester. I’m doing three three-week cycles, two weeks on and one week off; three days ago, December 23, I had the first infusion of the second cycle. At the end of these cycles, they’ll do another CT scan, and then we’ll see where things stand. As I understand it, depending on the results at that point the doctors may want more of the same; more of the same plus additional interventions; or a switch to one or more other treatment approaches.

Those are the basic medical facts. I haven’t yet said anything about how profoundly my wife, family, friends, colleagues and students have been supporting me; nor anything about the experience of entering the immense institutions devoted to treating cancer; nor about the day to day issues of dealing with the illness and the side-effects of its treatment. All of that and more I hope to write about in coming posts. I want to provide this account of my encounter with cancer, but I’ll end this post by emphasizing that my main goal is not to provide this account but to fight the disease in every way possible and be around for many years to come, living a life free of, or at least not dominated by, this illness.