Less than the Least

Greetings, and welcome to those who have found their way to this site.

I have no experience at blogging, so I’m not quite sure how to begin. But a bit of autobiography seems in order. Like David, I’m a law professor – I teach criminal law and criminal procedure at Harvard – and also an evangelical Christian. That puts us in a pretty small, and maybe pretty weird, demographic. I’m also a political junkie and a registered Republican, though I’ve cast as many Democratic votes as Republican ones. I’m interested in all those things – law and legal theory, crime and criminal justice, everything about American politics and political culture, the culture of evangelical Protestantism, and the intersections of various items on that list. David has a similarly broad set of interests – plus, he’s an uncommonly smart and interesting guy. Which is why blogging together seemed like a good idea.

I have one more pair of interests worth noting in this initial post. For the past eight years, I’ve lived with chronic pain in my back and right leg. The pain is constant now, and severe. Recently, another medical condition has joined that one: I have colon cancer – a piece of unpleasant news I learned about ten days ago. I’ll have surgery this week, probably followed by chemotherapy. These days, back and leg pain is joined by a lot of pain in my abdomen: sometimes, I think everything hurts. And I’m very, very tired.

I’m unbelievably tired these days, and I know I’ll feel more so after this week’s surgery. I’m tired from the drugs I take, tired from the pain in my back and leg, and now tired from the tumor inside me. The end of Isaiah 40 seems to speak to that weariness. The words are famous:

“Even youths grow tired and weary, and young men stumble and fall. But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”

I’ve heard and read those words many times. Roughly translated, they seem to say: when we fall, God picks us up. Sometimes it works that way. But often, I find that when I fall, I stay down – or fall farther. Life is not always a happy picture of obstacles overcome, difficulties surmounted. Rotten things, like cancer and chronic pain, happen. Healing happens too, but not always. There are no guarantees.

Physical pain hurts, ugly things look bad, nasty smells smell nasty. What do these basic realities have to do with one another?

I’m pretty sure the conventional response is: not much. Ugliness is an aesthetic judgment, and aesthetics seem somehow not quite real – a kind of ethereal sensibility that one cannot possess absent a measure of training and refinement. Pain, on the other hand, is reality itself: as hard as the ground underneath one’s feet. It is the reality into which all other realities collapse. The more you hurt, the more you do nothing BUT hurt. No training is needed to absorb that lesson.

My surgery happened about ten days ago; I’ve been home from the hospital for a week. The surgery went well, as these things go: the tumor was sizeable but they apparently got all of it, which is good news. Cancer has spread to a few lymph nodes, but fewer than the docs expected. I’m to start chemo, and possibly radiation, soon.

I was hoping to do a fair bit of blogging during this time, but that may be harder than I had imagined: there are good days and bad days, and on the latter, reading and writing just aren’t possible. I’ll do what I can.

I’m trying to feel that eagle soaring . . .

I’ve spent the month of March, so far, recuperating from surgery for colon cancer. You read a lot when you’re getting over surgery—and, if you’re like me, you watch a lot of “Law and Order” reruns (preferably, any episode that includes the late Jerry Orbach)—and one of the subjects I’ve been reading about is, no surprise, cancer.

Sometimes, the reading is a help. People who have been down this road know things about it that I don’t, and some of them are things I need to know. But the accounts of cancer treatment I’ve read have some problems. One in particular bothers me.

I’ve spent the month of March, so far, recuperating from surgery for colon cancer. You read a lot when you’re getting over surgery—and, if you’re like me, you watch a lot of “Law and Order” reruns (preferably, any episode that includes the late Jerry Orbach)—and one of the subjects I’ve been reading about is, no surprise, cancer.

Sometimes, the reading is a help. People who have been down this road know things about it that I don’t, and some of them are things I need to know. But the accounts of cancer treatment I’ve read have some problems. One in particular bothers me.

I’ve spent a fair bit of time around hospitals over the years: two major abdominal surgeries, three lower-back fusions, and more injections and films and tests of various sorts than I can count. The Boston-area hospital I’ve come to know best is Massachusetts General, where my last three surgeries were done.

This past week, I paid my first visit to a cancer treatment center: the Yawkey Center, named for longtime Red Sox owners Tom and Jean Yawkey, whose charitable foundation helped build it. The difference between that center and the hospital that sits next door to it is mind-blowing. Mass General embodies bureaucracy of the coldest sort. Yawkey oozes warmth. The waiting room—where cancer patients sit while waiting to have blood drawn or to see their oncologists—faces one of the best views of Boston I’ve ever seen. You can’t look at that view and avoid smiling. Notice: that smile-inducing vista belongs not to doctors in their offices, but to cancer patients.

My cancer has been promoted: I’m officially in stage 4. My doctors have found two cancerous nodules—a euphemism for “small tumors”—one on each of my lungs. I started chemo this week. Next week, I’ll see a thoracic surgeon who will, sometime this summer, cut those tumors out. Needless to say, this isn’t good news—though, thanks to medical advances (especially, thanks to those evil drug companies that politicians regularly attack), it isn’t disastrous news either. We’ll see what the future brings.

I don’t have any previous experience with this sort of thing, but judging from what I hear and read, I’m supposed to be asking why all this is happening, and why it’s happening to me. Honestly, those questions are about the farthest thing from my mind.

Thanks to some of my cancer survivor friends, I recently discovered that Wikipedia has an entry for “Chemo brain.” (The link is here.) They call it “Post-chemotherapy cognitive impairment,” but I think the simpler label works better.) So far as I can tell, it’s totally true: these drugs seem to have roughly the same effect on mental acuity as repeated viewings of “Legally Blonde.” I can feel the I.Q. points departing, perhaps never to return. And I didn’t have that many to spare.

I know that a lot of interesting work is being done these days on links between mind and body. I’d love to understand those links better. One thing is clear: when your body takes hard shots, your mind suffers. A pain researcher once told me that chronic pain patients’ minds age much faster than the population at large; fighting off the pain uses up mental energy, and not all of that energy gets replaced. So too with fighting off cancer cells, I suspect. Thankfully, I’m not a mathematician—I’d already be far too dumb to do the job. Legal academics is a more forgiving line of work, and these days, forgiving lines of work sound pretty good to me.

“Live strong” is a common slogan among cancer patients. I think I understand the slogan’s appeal, and I admire the spirit that lies behind it. But it doesn’t fit my experience, and I suspect I’m not alone.

Reduced life expectancy aside, the chief consequence of stage 4 cancers—even more, the chief consequence of their treatment—is weakness, not strength. Cancer and chemotherapy, taken together, are exhausting. Walking up a flight of stairs feels to me like running a couple of miles would feel to a typical out-of-shape 50-year-old, which is what I would be if I were healthy. All mental exercises are several times harder than they used to be. Concentrating takes real effort, and most of the time, I can’t pull it off—I have to read things twice (at least) in order to understand them once. My mind is two steps behind whatever conversation I’m in; I have to scramble to keep up. I feel half dead, as though a large fraction of whatever I was is gone, never to return.

In short, I can’t live strong, because there isn’t much strength left in me. But I can live weak.

Last week, I got some very good news—but it didn’t feel good at all. This week’s news was medically neutral, as these things are usually judged. But it felt incredibly sweet.

That sounds strange, so let me try to explain. Last week, I learned that the past two months of chemotherapy has been working: the latest round of films showed that two tumors on my lungs have shrunk slightly, and that no new bits of cancer are visible—not on my liver (which is where late-stage colon cancer tends to migrate), and not on my lungs. That doesn’t mean I’m cancer-free save for those two lung tumors. As I understand it, the odds remain high that there are small bits of cancer out there, including at least some on my lungs. But the films suggest that my chemo regimen can either kill those incipient tumors or stop them from growing. Which means my life expectancy just got longer by at least a year, and maybe more.

Like I said, it’s very good news. What’s not to like about a longer life expectancy when faced with a killing disease?

Four months ago, on February 27, doctors removed a large tumor from my colon, along with a fair chunk of the surrounding abdominal tissue. The tumor had broken out, but they didn’t know how far the cancer had spread. Last Friday, June 27, four months to the day afterward—a different set of doctors took out two smaller tumors, one on each lung. The doctors also took out two even smaller growths that were too small to show up on films. But these other growths turn out to have been benign. So far as anyone now knows, my lungs are cancer-free.

It’s possible the news will turn out to be less positive. Once it breaks free of the organ where it finds its first home, cancer is like the proverbial bad penny: it tends to keep popping up. Eventually, metastasized cancers like mine usually kill their patients. Eventually, but not always—and not always soon.

That’s why cancer patients think differently about time than most other people.

We won’t ordinarily celebrate events like birthdays on this blog, but today’s is special enough to warrant an exception: Bill has just turned 50. It’s hard to believe he is fifty years old now, but it is also hard to believe that a scholar who has contributed so much for so long is only fifty. My prayer, to use the terms of Bill’s remarkable reflections on time in his recent blog posts, is that this year will bring not just survival, but a great deal of life.

Happy Birthday, Bill.

I never met Tony Snow, the onetime White House press secretary who died of metastatic colon cancer yesterday. But I wept when I heard the news. Much to my surprise, Snow emailed me a few months ago after he heard about my disease—we must have a mutual friend or two, though there can’t be many: I’m not well connected in either media or political circles. He wrote to encourage me, and to offer some practical advice. The best advice was this: keep living. Cancer and its treatment can occupy every waking moment (while drastically increasing the number of sleeping moments). Don’t let it, Snow said. Live and work and, most of all, love—as much as you can, as often as you can. It was and is terrific advice. And it was an extraordinarily kind thing, the act of an uncommonly good and decent man—coming from one who, even then, was fighting the last stages of this awful disease. My heart and my prayers are with his family. May God bless each and every one of them in this hard time.

Since my films are now clear, my oncologist tells me that I have a good shot at living for what seems like a long time: my five-year survival odds are in the 25-30% range, if I understand the data correctly. Those odds are much higher than anyone with metastatic colon cancer has any right to expect—for which I’m very grateful. It may sound strange, but I’m a very lucky guy, as my cancer patient friends know well.

The news isn’t all good. If I’m not in that happy 25-30%, my life expectancy is two years, maybe a little less. Apparently, the mortality curve for someone in my situation is not a bell curve with a long tail, as I had assumed. Instead, the curve has two humps: one that begins in about a year and a half (again, if I understand the relevant data), and another one several years later. Odds are, cancer will either get me soon, or not for a long time.

In the meantime, I seem to be nearing the end of the treatment road, at least until the cancer pops up again. Chemo begins in a little over two weeks, and will last for a few months. Then, I wait. If and when the cancer comes back—probably in my lungs, since it’s already been there—chances are, it won’t be treatable.

Last week, my latest and I hope last round of chemo began; unless things change, the plan is to keep going til mid-December and then quit for good.  I feel lousy:  low-grade nausea is a constant companion, and sometimes it isn't low-grade.  One of the drugs gives me a swollen and sore mouth, which makes eating, drinking, and talking painful.  (No doubt my speech has often pained my students.  Maybe this is payback.)  And, of course, there is the onset of Chemo Brain, just when classes are about to begin.  (What was I talking about again?)

One day, I suspect we will see today's chemotherapy as akin to leeches and bloodletting for patients thought to have "bad humours" in their blood:  earlier versions of the kind of medicine that kills the disease by killing the patient.  Of course, the comparison isn't quite fair, and it seems ungrateful on my part to make it.  These treatments are not killing me--on the contrary, they may be keeping me alive.  I should be thankful, and I am, for the skilled and decent men and women who supervise my drug regimen.  Whatever life I have left, I owe to their competence and commitment.  I can't say enough good things about them.  Still, it's a strange enterprise:  progress happens, but it always feels like regress.

Thanks to the kindness of some local friends, Ruth and I have spent most of this week at a lake house in New Hampshire.  It's a remarkable place.  Staggeringly lovely and (much to my surprise) nearly deserted:  I guess the traffic returns on weekends.  Today was still; the lake looked glassy save for the tiny ripples moving along its surface.  Sitting on an old wooden dock, all I could hear was the low buzz of insects, a few birds, and the sound of barely-moving water lapping at the dock.

To me, such places offer a kind of magic.  Their near-silence sings to my soul:  a soft love song, sweet and sad and achingly beautiful.  The scene seems at once alive and at rest, and I feel as though I belonged to it.  I usually think of myself as having been made to do things:  raise a family, teach, write.  But I wonder sometimes whether, instead, we might be made for places.  If so, I was made for someplace like this.

Though I love that world, going home to the world of cities and cell phones and reliable internet access will be hard.  But then, I'm not sure whether I'm going home or leaving it.  Beauty can confuse, even as it captivates.

Not long ago, I read something by Roger Ebert, a skilled and insightful movie critic who has battled thyroid cancer and related conditions for a long time now, in which Ebert said roughly this:  Cancer patients are widely seen as courageous.  Presumably some are, but for most of us, the virtues others ascribe to us are not merited.  The truth is, patients who live with advanced stage cancers have little choice in what we face; for most of us, life consists of putting one foot in front of the other, doing what you have to do and along the way, preserving and treasuring whatever small slices of normality you can.  Like Ebert, I don't see much virtue in that.  I've always been more cowardly than courageous, and I don't think my illness has changed that state of affairs.  If anything, the opposite:  I had several extended hospitalizations as a kid, and those seemed easier to me than the ones I've had recently.

Much to my surprise, what I've found instead is that my illness has revealed the virtues of my friends and my family.  I know that spouses and children, parents and siblings are supposed to and usually do love one another.  Still, I've gotten far more than my share of that love over the past seven months, even (maybe especially) on the many days when I've been irritable and worse.  More surprising still, those months have seen a host of friends, including more than a few I didn't know I had, coming out of the woodwork--offering blessing and support, assistance and encouragement, precisely as those things have been needed, all without my lifting a finger to ask for them.

On Wednesday of this week, I heard that the latest round of films were clean--no tumors in my lungs or in my abdomen. Lungs and livers are the places advanced-stage colon cancer likes best. The fact that they appear to be cancer-free now doesn't mean I'm cured, not by a long shot. But it does raise the odds, if only by a little, that I'll be around for awhile longer. For me, that's very good news.

Not long ago, a wise friend told me that the key to navigating cancer treatment is not to get too high when the news is good, and not to get too low when it's bad. That's good advice: there are many twists and turns in this road, enough so that good or bad news is likely to be followed, sometime, by its opposite. Even so, I can't help experiencing a measure of joy about this latest development. Maybe--just maybe--I'll live to hold a grandchild, or see my sons, ages 20 and 18, graduate from college. If not, that's OK; I don't feel cheated: many, many people in this sad world suffer much worse and deserve much better than I. Good medical news is no moral entitlement--not something I'm supposed to have. The feeling is more akin to a child's wonder at the packages under the tree on Christmas morning. I remember that feeling well; it seemed as though my whole body smiled. It feels that way now. Even if there are no more such presents, thanks be to God for this one.

On Wednesday of this week, I had my last chemo session--at least for awhile and maybe for good.  I'm not quite done--I'll carry around a pump with a drug called (believe it or not) 5-FU until tomorrow afternoon.  Cancer treatment isn't usually funny, but that name cracks me up.  Anyway, once I'm unhooked, I'll be finished with chemo until the cancer returns, and perhaps even then.  The odds that I'll survive another five years or longer are about 30% now, which is very good indeed for a patient with stage 4 gastrointestinal cancer.  Even if I'm on the wrong side of those odds, my chances of living at least another couple of years are significantly better than they were several months ago.  All of which is very good news, for which I'm very grateful.  God is good, even--especially--in hard times.

That good news means my life is about to change.  Save for three weeks in June, the past nine months have been spent having surgery, recovering from surgery, or having weekly chemo sessions (plus a couple of days of the amusingly named drug every other week).  Those chemo sessions and the days between them have been rough--either because that's the nature of the relevant drugs or because I'm unusually susceptible to the side effects.  Maybe a little of both.  Nausea and fatigue have been more or less constant.  Along the way, I've suffered skin rashes, mouth pain, some bleeding in fingers and toes, various other irritating conditions that are too gross to describe, and--worst of all--increasing stupidity.  I so, so look forward to recovering the more-or-less normal use of my body, not to mention a functional brain.

It's hardly surprising that the prospect of finishing cancer treatment--again, at least for the time being--is very pleasant indeed; I can't type the phrase without smiling.  What surprises me is that, in some ways, the prospect is also a little sad.

Apologies for the long silence:  my chemo ended just before Thanksgiving, but the six weeks since them has been rougher than I'd expected:  I'm still pretty tired and a little queasy all the time, and have been struggling to fight off an infection.  All of which has left me feeling a little down.  It's as if something inside me didn't permit depression to take hold in the midst of chemo and cancer surgeries.  Now that I have a little breathing space, the story is different.

Dealing with cancer is a little like raising kids.  Parents figure out how to handle a two-year-old at about the time the child turns four--at least I did; I was always behind the curve.  So too here.  By the time my last round of chemo was ending, I knew how to do chemo.  I haven't yet gotten the hang of this stage of the process, when I'm trying to put one foot in front of the other with an hourglass staring at me.  But plenty of people have made this adjustment (and much harder ones) before, and I'm sure I will do so too.

 My spouse and I are in the process of joining a Boston church; the church requires that would-be members give their testimony. Because my memory is lousy these days, I wrote mine out; it’s pasted below with a few minor edits. Some of this material, though not all of it, will be familiar to anyone who read this blog last spring. Here it is:

 Every few months, the docs check my lungs and liver and assorted other places to see whether the cancer has returned. Today was my day to be filmed. Film days are usually easy, though sometimes unpleasant: I spent the minutes before heading to the radiology department ralphing in the parking lot. (I’ve always loved the verb “to ralph.” It’s a classic onomatopoeia. I wonder what the analogous term is in other languages—does it have the same sound? Weird the things I think about . . .)

I got the results of my latest set of films a few days ago—no visible cancer in my lungs or abdomen: the places where it is likeliest to show up. Happy news indeed. As my oncologist puts it, each clean set of films is “eating up risk”: the next eighteen months are the time when cancer is most likely to reappear. (When it does reappear, it’s likely to stick.) That scenario is still probable, but it’s less probable than it was. 

It’s often claimed that other Western nations achieve as good or better outcomes from their nationalized health care systems as Americans achieve with our strange mix of private and government-funded health insurance—and at far less cost. Assuming that claim is true, it might be true for a reason policymakers haven’t considered. Right now, a hugely disproportionate share of the world’s medical innovation happens at the high end of America’s health care market. People like me benefit hugely from that innovation: I’m a well-insured cancer patient living near Boston, which may have the world’s highest per capita concentration of medical talent outside Rochester, Minnesota. 

This article made me sad. The subject is the coming depopulation of much of the world. Here’s the key graph:

Recently, I stumbled across this wonderful and sad poem by Edna St. Vincent Millay. It’s the best description I’ve ever read or heard of living with chronic pain:

The past few months have been discouraging. Thanks to pain, nausea, and fatigue—the first two are worse now than during chemo; the third is almost as bad—I’ve done a lousy job of teaching this semester. I’ve managed to do a little writing along the way, but only a little: much less than an ordinary semester’s work product.  Bad teaching and not much writing are not what I was hired to do. Frustration and guilt are constant companions. 

Cancer is more pickpocket than robber: it catches you unawares; you find out about it after your wallet is gone. Most of the time, anyway. 

I was more than a little nervous about the results of my recent brain MRI. I needn’t have been: the films were clear; no detectable cancer. (Insert sigh of relief here.) As a family member put it, “they took pictures of your brain and found nothing there.” . . . 

Before moving to New England nine years ago, a couple of friends told me that T.S. Eliot must have lived here when he wrote: “April is the cruelest month.” Winter seems to last forever—and then, bang! Summer comes. Spring pretty much doesn’t happen. Or so the conventional wisdom holds.

Thanks mostly to medical business, I’ve been out of touch for awhile. I was hospitalized for various tests and procedures nearly all of last week (no large problems, thank God), and save for a brief appearance at the law school’s graduation ceremony – I love graduations: everyone is so unremittingly happy – have spent this week recuperating.