Sunday, February 7, 2016

Good news

First, the news is good. I’ll say more about it in a moment.

Second, those of you who saw my updated Facebook status already know this news; to those of you who are following just my blog posts, I apologize for keeping you in suspense between my last post and this one.

Now, the details: The CT scan showed that my tumors have shrunk by 10 – 30 %. When we looked at the scan from last Monday, compared to the one Sloan-Kettering had done just before I began chemotherapy, the effect was particularly striking (though probably partly due to the use of different CT scanners): in the earlier scan, the separate tumors looked as if they were reaching out and touching each other, whereas now they look like distinct islands. In between, it’s possible that healthy liver cells are regenerating.

Obviously I still have a long way to go. But the next step, happily, seems pretty clear: more chemotherapy, which in fact I began this past Wednesday a little while after we got this news. The basic strategy is straightforward enough, as I understand it: let’s stick with what’s working and aim to get more good results. With more progress in shrinking the tumors, then there’ll be more flexibility to consider other options that might be even more effective.

Meanwhile, my job is to make this treatment as successful as possible. That means more exercise to keep my strength up; more effort to understand and apply techniques like visualization, affirmation and mindfulness; some herbal supplements that Sloan-Kettering’s complementary medicine physician recommends; and even healthier eating. I’ll have more to say about what’s involved in honoring these good resolutions in coming posts.

Tuesday, February 2, 2016

Waiting for the results of my CT scan

It’s the day after my CT scan; we don’t know the results yet and won’t learn them until we see the oncologist tomorrow.

It’s an anxious moment, the sort of moment I imagine many, many cancer patients have experienced. Different people must react to these moments differently; I don’t feel upset, but I am certainly intent. The way this moment arrived is this: back at the start of December, 2015 the Sloan-Kettering physicians decided I should have nine weeks of treatment, or, more precisely, three three-week cycles of two weeks when I received intravenous chemotherapy and one week off. Then they would do a CT scan. I’ve now done those nine weeks of treatment, and had the CT scan. I also now understand my illness, and my treatment options, better. But there is a lot I don’t know, and quite a bit that no one knows, about what to do now. So, partly to collect my own thoughts and partly to describe one of the difficult elements of being treated for cancer, I’m going to lay out the possibilities as I understand them now.  

I know that I am feeling quite well, and people – including my oncologist -- tell me I look well. The fact that I’m in as good shape as I am after these weeks of chemotherapy is a good sign, not only that I’m tolerating the chemotherapy well but also that the chemotherapy is having an impact on the underlying cancer. The last time we saw the oncologist, she felt confident enough that she told me I could take on a two-year-long work project. But she also said that of course we wouldn’t know for sure how I was doing until we got the CT scan results.

So now we’re about to learn those results. I wish there weren’t a two-day wait between the scan and the results, and I’ve imagined a phone call ending the suspense, telling me that the scan shows the tumors have almost disappeared. Or a call saying my condition is critical and I’d better get to the hospital right away. Neither has come. That may be a sign that the news, when we get it, will be neither miraculous nor horrifying.

Perhaps the scan will show that my tumors have actually grown. It seems unlikely but I guess it’s not impossible. In that case, I’ll have to attribute my feeling good not to any actual progress against the disease but to the many medications I’m taking (and to my wife’s excellent power shakes, with which I begin every day). And then we’ll need to figure out what other treatment possibilities there are (I’ll get to these in a moment).

Perhaps the scan will show that my tumors have neither grown nor shrunk. Hearing that would certainly be better than learning they’ve grown. My guess is that they were growing before I started the chemotherapy, so in fact this news would point to a clear victory for the treatment, namely that it halted their growth. Since I am feeling relatively well, I guess I could go on feeling this way indefinitely, and perhaps one way to do that would be to continue with the chemotherapy just as I’ve done over the past nine weeks. (There may be other ways too, but again I’ll get to these in a bit.) That would work as long as the chemotherapy remains effective, and as long as the side-effects of the chemotherapy don’t multiply.

Perhaps the scan will show that my tumors have shrunk. “Shrunk” seems like a clear enough word, by the way, but I’m not sure it is. I’ve seen a study, from physicians at Sloan-Kettering, in which it appeared that a less-than-20 % decrease in tumors did not count as a “response” to the treatment. That might mean that some amount of shrinkage doesn’t definitively indicate an effect of the chemotherapy – though it may also be the case that even a little shrinkage may correlate with a better prognosis.

Anyway, if my tumors have shrunk, that’s great – but it also opens up a set of questions we haven’t had to wrestle with up till now. My sense is that when my chemotherapy began, the Sloan-Kettering physicians felt there really wasn’t much alternative. I needed treatment right away, and this chemotherapy was the clear treatment of choice (the same study calls it the “gold standard”).

But if the tumors have shrunk, I may have choices. For one thing, I may be well enough that I have time for steps that would initially delay treatment for the sake of delivering better treatment later. That’s a bit opaque: concretely, what I mean is that, provided the cancer has not spread beyond my liver, I might then be a good candidate for a clinical trial that’s ongoing at Sloan-Kettering. In this trial, they implant a pump beneath the skin of my abdomen and connect that pump to an artery that leads directly to the liver; then they fill the pump with chemotherapy medication by injection, and the pump delivers the medication straight to the liver. To get this started entails major surgery, and I couldn’t receive any chemotherapy until I’d recovered from the surgery itself – but now I may have some time in which to do that. The study I’ve referred to, just published in the last month, reports data suggesting that this approach is considerably more effective, on average, than the treatment I’ve had so far.

But (there’s always a but, or in fact several) it’s not effective in every case, and even when it’s effective it’s not always as effective as the treatment I’ve been having so far. In addition, while the clinical trial seems to attack the cancer in the liver more powerfully than the intravenous treatment I’ve been receiving, my impression is that the intravenous treatment probably does more to prevent cancer developing somewhere else in my system – precisely because the intravenous treatment, unlike the clinical trial treatment, isn’t aimed directly and solely at the liver. The intravenous chemotherapy would actually continue along with the clinical trial, but the problem with that is that my oncologist says that patients receiving the clinical trial chemotherapy may not be able to handle as much of the intravenous chemotherapy as those who are on only the intravenous chemotherapy can. Also, it turns out that the circulatory system in the abdomen varies a lot from person to person, and in my case the artery to the liver is smaller than usual, a fact that increases the difficulty of successfully hooking the pump up and keeping it in place.  So judging whether I’m best suited for this clinical trial or for more of the solely intravenous treatment is quite a delicate matter.

And then there are other questions. If the tumors have shrunk enough, should the possibility of liver surgery (called a resection) come into the picture? Are there genetically-based treatments that might work for me (something Sloan-Kettering is already looking into)? Jimmy Carter’s brain cancer was treated with an immunotherapy drug called Keytruda; should I be trying to get this drug? And are there other clinical trials under way that might be more effective? Should I also explore possible treatments from Chinese medicine? None of these options was relevant while Sloan-Kettering was bringing me back from the acute difficulty I now realize I faced at the beginning of December. But now all these options may need to be considered – depending, of course, on just what the results turn out to be tomorrow.

So this is, as I said, an anxious moment. It’s a hopeful moment too, and I am very happy to have this renewed hope, but oddly enough this moment is more anxious because it is also hopeful.

Tuesday, January 26, 2016

Visualization and affirmation and cancer

I’ve always thought that mind and body are connected, but even without that predisposition, getting cancer naturally makes me more willing to look at possibilities I might have discounted before.

Could it make a difference to my treatment if I visualize a column of white light obliterating my tumors? Well, maybe. A friend of mine told me a remarkable story of a doctor whose patient imagined her tumor as a pie, from which she cut out a gradually expanding piece – and when surgeons removed that tumor, it was missing just that sort of piece.

Could it make a difference if I affirm that I’m getting healthier every day? Or that I am light, or that I am love, or that “All my feelings are trying to help me get well. I include them in love so that I may truly get well”? All of these come from a chapter on “Healing Affirmations,” from a book called “Opening to Healing Energy,” written by someone named Shepherd Hoodwin, whose website describes him as a channel to “Michael.” I have my doubts about channeling, to say the least, but I am ready to try to be as affirmative as I can, and actually saying or affirming these words may be a way to do that. I don’t mind trying; in fact I’d like to learn to employ all these techniques more fully than I currently do.

At the same time, I don’t always feel that affirmative. I’ve been fortunate that chemotherapy so far has not been more arduous, but even so it hasn’t been easy, and when my body feels lousy, so do my mind and spirit. So then the possibility arises that my failing to be more positive might be contributing to my illness; that it might be, to that extent, my fault. This, as my sister said, is really deeply unfair; to put it mildly, it adds insult to injury.

But what do you do when you really don’t feel positive? The best answer I know came from a very wise friend, who served in World War II. He said that fighting cancer is like combat. You don’t have to like it or feel positive about it or anything like that; you just have to keep fighting. You walk down the road, shoot at some enemy soldiers, then you walk down the road some more, shoot some more. It’s not fun but you keep going.

I found that prescription reassuring. All I had to do was to go to Sloan-Kettering for each treatment and say, “Hook me up, doc” – and then I’d be pushing forward. Now it strikes me that actually my mental image of combat is a form of visualization itself, even though the picture I’ve had in my mind’s eye is a far cry from a column of healing light. And the best thing about this way of keeping going is that once you know you only have to just keep going, maybe it’s easier for you to start to feel better too.

Saturday, January 23, 2016

Cancer and connection

Cancer challenges you in every possible way. But it’s also a moment when you realize how good people can be, and how much you need them. This has been a central part of my experience over these past months, and I want to describe it well enough to do it justice; but before I start I have to say that the problem with giving examples is the risk, the inevitability, of leaving out many others. I am grateful to many, many people for their support, and I can only refer to some of them here. 

My students last fall gave me a giant get-well-soon card that they’d all signed (along with the professor during whose class the card was passed around). Meanwhile the school authorized me to give an all-multiple-choice final exam – which made my grading season vastly easier and also incidentally allowed me to learn about the potential value of this kind of exam compared to my usual essay questions – and my students accepted this change in exam practice graciously too. The New York Law School Law Review, patiently awaiting my edits on a forthcoming article, sent me flowers. Colleagues from every part of the school ask how they can help. 

Members of my synagogue have organized themselves to bring us a meal each week on the evening after we get back from each chemotherapy treatment in New York – and even on the off-weeks! We didn’t really understand how much of a relief it would be to not have to come home on these days and prepare a meal, or how deep a personal message we would feel from each of these families’ reaching out to us this way.

Other friends, near and far, have brought meals, sent food, gotten us books – from serious to frivolous, both appreciated – and come by to say hi or go for walks with me. Or they’ve called or emailed or messaged me on Facebook. Several, including friends from the law school, have shared with me their own experiences with cancer, either from earlier in their lives or from right now, and these discussions have meant a lot to me while also reminding me, again, how many people there are who have encountered this disease.

My family members have been at my side in every way. My three children have all accompanied me to chemotherapy sessions, traced the ups and downs of my treatment with me, hung out with me (always a pleasure, now even more so), and done everything we could think of to ask them to do. My sisters have travelled to see me, in the midst of their own busy lives. My in-laws -- what a formal term for my sisters' husbands, my older son's wife, and my wife's mom -- have all been loving and attentive. My cousins have offered all sorts of support, from good wishes to connections with medical experts. My niece is crocheting for me! And I could go on ...

It’s a cliché to say that a grave illness forces you to take stock of what’s really important, yet it’s true. So certainly all of this human kindness makes me understand better how important people are to me. But that sounds very abstract. Maybe this is more to the point: in a way I feel that I have more family and more friends than I did before, not because the actual numbers have changed but because my sense of our connection to each other has.

I haven’t yet spoken about Teresa, my wife. But really she and I have battled this disease together at every stage. Teresa keeps track of my medications (I have about 8 different ones now, all in one way or another easing the impact of the cancer or the chemotherapy). She makes our meals – though at least I can report that I do some of the dishes again, after slacking off entirely in the first month or so of my treatment – and each day devises a protein shake that supplies energy that I very much need. She studies the information on the Cholangiocarcinoma Foundation website, so she knows more about my disease than I do. She sings songs and does cheers. And she is with me every step of the way. As we’ve gotten more used to the disease and its treatment, we’ve both begun to return to our offices more – but actually we’ve spent more time together, day by day, in the months since we began dealing with my illness than we’d ever been able to do for so long before. That’s been sustaining, therapeutic, and … fun!

I wouldn't want to fight cancer alone. I couldn’t imagine having gone through these months without the love and affection that all these people -- and others! -- have given me, and that I’ve felt for them. I wish I didn’t have cancer, of course, but having cancer has not made me unhappy. Actually, it has made me feel connected and loved.

Monday, January 18, 2016

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 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.