Cancer is not a moral failure

Back during the Cold War, cancer was often compared to communism, and vice versa. Seriously. It was during the height of those hostilities, in the early 1950s, that the British epidemiologists Richard Doll and Austin Bradford Hill published two papers that clearly established the relationship of smoking to lung cancer. Although the idea had been around for some time, many eminent scientists, most notably R. A. Fisher, were convinced that Doll and Hill had it all wrong.

Of course they were right. Sadly, Epidemiology, my chosen profession, has not had a similarly important contribution to public health since, and likely never will.

Another unfortunate downstream effect of the smoking - lung cancer story is that cancer has become associated in many minds with risky behavior. If you have cancer, you must not have lived right. This is bullshit, and a moment's thought will tell you so. The majority of smokers do not get cancer (although smoking certainly causes cancer), so even among lifetime heavy smokers only the unlucky end up with lung cancer, or bladder cancer, pancreatic cancer, or one of the several other cancers caused by smoking. Even among smokers who get lung cancer, a (very) small fraction have cancer for some other reason (genetic susceptibility, radon exposure, unknown causes, . . .), and among ex-smokers and non-smokers this fraction is much larger (100% of non-smokers, of course). 

Sometimes risky behavior is mistaken for immoral or shameful behavior. Smoking is risky, in the sense that it increases your risk of many diseases and death. Mountain climbing is risky, too, but is rarely viewed as bad behavior. So maybe the distinction has to do with how these behaviors affect other people, but that doesn't work out either: secondhand smoke does affect the health of those exposed, but bad mountain climbing decisions often lead to multiple deaths, and essentially victimless behavior such as overeating gets put in the "bad behavior" category a lot more often than it gets put in the "heroic but crazy" category.

The public health community would like you to know that avoiding risky behavior of all kinds is better for everyone, which is true enough, all else being equal. But strangely enough we all get sick and die, even epidemiologists, and how and when we die is only affected in part by how we have lived. How big a part our behavior plays is impossible to say given what we know now. The sum of our ignorance about the full set of events that lead to cancer or any other way of dying has to be counted on the "bad luck" side of the ledger, since we can hardly know to avoid something that we don't know can hurt us. 

There's a lot of bad luck out there. If you come up with an algorithm for avoiding it, you will have made the greatest contribution to epidemiology since Doll and Hill, at least. Also, you should buy a lottery ticket.

How to die, and when

Don't get all excited about the title -- that's just click bait. But in the absence of anything new to report as a patient, I'd like to step back a little and think about some life-threatening events in my past, how I slipped past them, and how those events compare to my current circumstances.

First, though, a little more justification of the title. I've had some memorable conversations with people over the years that start (in my version) with the other person saying something along the lines of: "that's the way I want to go -- all of a sudden, no warning [optionally: in my sleep]." My revulsion for this formula goes back to when I was very small and the prescribed bedtime prayer was 

Now I lay me down to sleep

I pray to God my soul to keep.

If I should die before I wake

I pray to God my soul to take.

That third line got me, and I renounced bedtime prayer just as soon as I was given enough privacy. Thankfully that was pretty young, maybe 4 or 5. I have never really reconsidered my position, so it may be the oldest continuously-held opinion I have: that I do not want to die before I have had a good long time to think about it, get my affairs in some kind of order, and say "Good-bye, I love you." to those who are still speaking to me. Thank you, multiple myeloma.

At first I thought I had three main events to recount in my past that might count as brushes with death. Then I remembered a few others, and realized that there were others, more numerous, with lower probability, some totally ambiguous, maybe some I never even knew about, etc. For example, there were a couple of spin-outs during my first year or so of driving (one on ice merging onto a busy highway, one in front of a dump truck coming down a long hill) that I hadn't included on my mental list. And one on a snow-covered road on the Red Mountain Pass in Colorado (look it up, if you haven't been there). Hard to evaluate how these relate to my continued existence, but I may be underrating them because they happened so quickly.

1. Those were near-accidents. One accident that did happen, and did happen quickly, was when I was a junior in college. Kenyon sits on what counts in Ohio as a Big Hill. On a beautiful Saturday afternoon in early October 1978, my friend Ethan and I were descending the north side of that hill on Wiggin Street on our bikes. Mine was an "English racer," with the classic trimmings: Sturmey-Archer 3-speed shifter, lugged alloy steel frame, caliper brakes, skinny tires. Ethan (a proud product of Ann Arbor-East Lansing-Detroit with loyalties to the glory days of American manufacturing) had a Schwinn (or maybe a Huffy?) with a curvilicious frame, a Bendix two-speed hub, and a highly suspicious paint job. My bike (no lightweight by modern standards) weighed maybe 30 pounds, and his weighed something like twice that. No matter, we were going downhill (see Gallileo). We were both smart enough to know that playing chicken wasn't a good idea, but subsequent events would show that he was smarter, or at least less dumb, than I was.

The events in question involved his left pedal being inserted between the spokes of my front wheel and my fork. This is a very effective way to stop a bike (mine). His bike remained quite stable. Meanwhile, I did not stop -- I flew over the handlebars (would have made a great photo or video if there had been anyone around to record it). What record there was, was written on my body, mostly in minor abrasions, except for my left hand, which was trashed. Bicycle helmets in 1978 were something you might have heard of but no one had seen one, let alone worn one. My head was doing about 30 MPH and heading straight for the pavement, when forces not directly under my control forced me to stick my left hand (the good one) out in front, and stiff-arm the pavement. I don't remember any of that, but there was a beautifully clear pattern of road rash from the hand up my left arm, across my shoulder blades, and down my right side that was easy to read. Meanwhile my head had not a mark. 

Ethan and I walked up the hill, about a mile, to the volunteer fire station. My left hand was bloody pulp, but I had just walked a mile up the hill, and the Ohio State - Penn State football game was on TV, so the firemen triaged me to campus security, who drove me to the local hospital ER, where all the appropriate things were done, most memorably removing embedded gravel with a wire brush. Ouch.

Villain: my own damn self. Hero: reflexes, Ethan, campus security (Reed, for those who were there). Long-term consequence: can't hold change in my left hand.

2. A slow-moving accident. Utah was a great place for accidental death. We avoided that, although not all of our friends did. Liz and a few friends had an ill-fated river trip, about which more some other time. I had enough sense/fear not to participate, and I was right for all the wrong reasons. One time that I failed to avoid danger -- indeed I was the prime instigator -- involved a desert backpacking trip in what is now (but might not be for much longer) the Grand Staircase - Escalante National Monument. I recruited Liz's brother Tim for a long weekend in Paria and Hackberry Canyons in early May. I had planned a loop hike up Hackberry and a side canyon, down into Paria and out. We came in late in the day, missed the mouth of Hackberry, and found ourselves hiking up what we deduced must be Paria. It was a beautiful hike, and rather than retrace our steps and go back to the car, we decided to reverse the route. The guidebook was written by a highly productive Canadian who had written dozens of trail guides to southern Utah but must have hiked so fast he wasn't great with details. The first night was great: camping in a side canyon of the Paria that was easy to find, gorgeous, and had almost no sign of human activity. In the morning, I was awakened by a VERY loud buzzing in my ear, and leapt up (reflexes again) thinking ground hornet, snake, or something terrible. It turned out to be a hummingbird checking out my ear as a possible flower. Day two we followed that canyon uphill, trying to find a "beehive-shaped rock" that would lead us across the high country. Turns out that every rock in the high country looks like a beehive (also there are a lot of bees). So we kept going up the canyon until it was clear that we had a problem. Water was getting a bit low. At this point, to my undying gratitude, Tim took over, and climbed (with full pack) to the top of the highest beehive and made me come up and see what he saw (I dropped my pack, however). Finally we could see our problem -- we had gone way north of the route we had selected, and had to figure out which of several deep side canyons to aim for (all but one of which were said to be "box canyons" without a survivable way in). It was a little after noon, hot, and there was no source of water in the high country. My cheery pictures of cactus flowers were becoming pictures of bones dried in the sun. Cue Ennio Morricone.

We chose a route that put us back in the general direction of where we thought we wanted to go. The closer we got to the canyon, the steeper the approach became, but we could see there was water down there. We tried several approaches, to no avail. Finally, Tim found a nearly circular wash head that looked passable, and we tossed our packs down and slid down the sandstone into a spectacularly beautiful side canyon, with a cute little stream and a healthy population of desert pupfish. We still weren't sure where we were. Eventually we worked out that it was Stone Donkey Canyon, one of the supposedly inaccessible box canyons, well north of our objective. From there, it was a nice long wet hike in the narrows down to where the car was parked, and, in one of those improbable (in Utah!) juxtapositions of need and fulfillment, a Navajo family pulled into the turnout as we exited Hackberry Canyon, and offered us cold beer.

Villain: my own damn self, speedy Canadian guy, geology. Hero: Tim, guy with beer. Long-term consequence: GPS?

3. Unintended consequences. I found I had MM in the Fall of 2015. By then, I had a lot of issues with my department Chair, and enjoyed telling him that I would not be available to teach in the next semester, without telling him why. I also told him that if he wanted to find the source of the low morale in the department, he should look in the mirror, and walked out of his office. He has not spoken to me since. The day after that meeting, I was scheduled for a session of chemo, with the attendant blood work. As it happened, my white cell count was basically zero, meaning that I had no useful immune system whatsoever. The hematologist thought that most likely I was having a reaction to one of the ancillary drugs (Bactrim), and that I should stop what I was doing and report immediately to the ER if I had signs of fever. Sure enough, a few hours later I started shaking like a leaf with a fever of 102. I was quickly admitted (not without a lot of questioning looks from everybody else in the ER who had probably been there for hours, nor without learning that my hematologist did not have admitting privileges to the hospital he had told me to report to). The next few nights I had continuous infusions of IV antibiotics and antivirals, fever dreams, and my general feeling that this might be the end. Daytime was better -- Liz and I were working on a grant proposal, and the isolation of that room was an unexpected bonus to the writing process, although I tired easily [the grant got good scores, but was not funded]. Another important plus was that Rosie introduced me to Words with Friends, a game we have been playing more or less continuously ever since (by the way, it's your turn). Dropping Bactrim has been effective in preventing and recurrences of the immune system crash, so it's all good (sort of) now.

Villain: Bactrim, RNB and KBB. Hero: Liz, Keith Carter (my primary care doc -- with admitting privileges), Rosie. Long-term consequence: new grant deadline strategy, new hematology practice.

In each of these cases, my destiny was completely out of my control, once I got to the point of near-, or near-near-, death. I am still confident that it's better facing an inevitable, but slow, path to death from cancer, even if I haven't yet accomplished much in terms of getting my affairs in order and telling all of those who need to know that I love them. But of course you're reading this -- I love you! -- Goodbye, if not just yet. More to come.