A Salamander's Tale

by Paul Steinberg

  I had just read James Surowiecki’s The Wisdom of Crowds: Why the Many Are Smarter Than the Few and How Collective Wisdom Shapes Business, Economies, Societies and Nations. And how collective wisdom was shaping my own medical decision-making.

  Yes, a group of independent and diverse and decentralized experts comes up with the wisest decision more often than almost any one individual. No need to get caught up in an echo chamber, in a point of view in one institution, in one part of the country, that has taken on a life of its own—a point of view that can no longer be debated and contradicted.

  This apparent cancer in my right lung became a Rorschach card, a set of ink blots, onto which any expert could project his or her own form of optimism or pessimism. Their perspective told me as much about them and their way of thinking as it did about the actual tumor.

  Some experts echoed what the thoracic surgeon had just told me, “You’ve probably got a rapidly growing lung cancer, not prostate cancer. We’ve got to get in there, biopsy it, remove it as soon as possible. Your life is in major danger.”

  Others seemed to be overly optimistic, “It’s probably nothing. Sure, your PSA is rising again. But you can just watch and wait and see what happens.”

  But then a consensus emerged. “Simply go back on the androgen blockade. Your PSA will head back toward zero. And if this tumor is actually prostate cancer, the tumor will recede, it will shrink. If it is a primary lung cancer—a new separate cancer that has started in your lungs—the tumor will grow larger and expand. If it is a benign granuloma—its rough edges, though, make it look like anything but a benign lesion—it will not change much at all.”

  Who knew that a crowd of experts could come up with a simple but elegant game plan? A game plan, though, that was filled with ambiguity and uncertainty.

  I was beginning to realize that many of the experts I was consulting had more trouble dealing with ambiguity and uncertainty than I did. Yes, I did want answers just as any human being does. Yes, I did want to know what this tumor was made of. Yes, I did know that prostate cancer seldom went into the lungs in its initial foray into the land of metastases. Yes, I did know I was taking a gamble: If the tumor turned out to be a rapidly growing new lung cancer, I had waited a bit too long to intervene.

  But chill out, guys. I am the one taking the risks, not you all. It all comes back to the psyche. Can I shore up my psyche? Can I shore up my ability to live with ambiguity and uncertainty? And can I help you guys live with this uncertainty as well?

  Yes, uncertainty is risk that is tough if not impossible to measure—risk that is virtually incalculable, risk that has few if any precedents. Unlike a blackjack hand where one can calculate the actual risk, where one can calculate the risk, say, in doubling down or in splitting eights, I was dealing with what Nate Silver calls a “back-of-the-envelope estimate (of risk) that may be off by a factor of 100 or by a factor of 1,000; there is no good way to know.”

  Yes, how could I chill out?

  The answer about the tumor came within a few weeks. The PSA had dropped steadily, and a new CT scan showed a rapidly receding tumor. The new consensus: Prostate cancer gets funky after sitting in your body for twenty years. This two-decade-old disease had found some nice little niches after all these years.

  With the help of my internist, I consulted with a different thoracic surgeon. Should we still be looking at the possibility of surgically removing this one and only metastasis, especially now that it was shrinking?

  This surgeon ended up defying all stereotypes, the notion that surgeons cut, boxers box, psychiatrists say, “Uh, huh,” all day.

  She took a quick look at the films and asserted, “You don’t need me, you don’t need a surgeon. We can get this thing radiated. You’ll be as good as new.”

  No muss, no fuss—no blood, no gore, no breaking of ribs, no destruction of muscle and soft tissue. No major collateral damage.

  Georgetown University had a new cyberknife, the surgeon pointed out, a piece of equipment that delivered radiation in a more focused and localized and efficient way. Instead of my needing to come in for a couple of minutes of radiation treatment every day for six weeks—as I had done in early 1985 for radiation to the prostate bed—I now only had to come in for three days, or five days, for thirty-five to forty-five minutes a shot.

  Ah, there is no accounting for the inventions that John Maynard Keynes imagined as changing the economy, a society, our world—and now changing my world of well-being. Breakthroughs are breaking through.

  A few metal markers placed into my right lung to establish the location of the metastasis, throw in a bit of castration—getting my PSA as close to zero as possible—to make the cancer cells as vulnerable to radiation as possible. And then the radiation itself over a three day period in February 2005.

  Voila—the tumor has disappeared, never to return to that specific location again.

  The disappearance of the tumor did not quite drown out a unified chorus. I continued to hear, “You have had your first of perhaps many ongoing visible metastases. It is now time to bite the bullet, to stay on the androgen blockade for the rest of your life.” Chemical castration had replaced surgical castration over the past twenty years. Surgical castration is irreversible; chemical castration is reversible—but the two interventions might as well be one and the same.

  “Stay the course. Do not reverse course. If this treatment is working, why change anything? Why go off the medication? Why would you consider not being castrate?” Huh? Why would I consider being castrate the rest of my life, if it is not absolutely necessary?

  I still had Gerald Murphy’s voice ringing in my head, and I still had Nick Bruchovsky literally speaking in my ear.

  Nick continued to remind me: If you stay on the androgen deprivation treatment for too long, the cancer cells will find another substance to fuel their growth. They will no longer need testosterone to stimulate them. Treatment will then become much trickier. You have a cancer that is hormone sensitive and radiation sensitive. Let’s take full advantage of those elements for as long as we can.

  Yes, less is more. A tricky concept to get across. 2 > 5. None of this computed for many of the physicians I was consulting with. I at least had had fifteen years to let it begin to compute.

  The final piece in the polishing of the brains of each of us: in late adolescence and young adulthood, and no earlier, we develop a capacity to handle ambiguity and uncertainty, and all the frustrations that come with the crazy bounces and nuances of life.

  In very early childhood, we are programmed as a species for language development. We are sponges at the age of two or three, picking up words and syntax and grammar of any language we are exposed to. Then comes mathematics in our first years of schooling, during the so-called latency years. Scientific thinking and abstract reasoning become more assured at the age of eleven and beyond. Throughout our childhoods and adolescences, we are ingrained with the rules of a society—the spoken and unspoken rules. Everything is clear-cut, cut and dry, black and white. The answers are incontestable and indisputable: 1+1=2, 5 > 2; the Earth revolves around the sun; one inch equals 2.54 centimeters; killing someone is illegal except in the context of war.

  Then come the gray areas. We begin to refine and polish our brains. Nuances seem to appear everywhere. Skepticism and even cynicism—all of which can turn into bitterness under the wrong circumstances later in life—rear their head. Do I believe in the god I have been taught to believe in? Do I believe in the religion of my forefathers? How do I make sense of life and death? How do I face the ambiguities of living and dying?

  Arguably young adults can handle ambiguity and uncertainty better than older adults. This ambiguity is new to them, a fresh challenge. The stakes are not nearly as high as for older adults: Death does not feel imminent. That wonderful sense of immortality gives us a sense we can face anything. Nothing is off-limits, nothing is sacred. We can talk and joke about anything, including sex and god and death and destruction—and all their n
uances.

  Our ability to handle ambiguity and nuances may not last long.

  As we get older, we get scared. The stakes are too high. We have kids; we sense their vulnerability; we recognize our own fragility. We get frightened of our own thoughts, and we want to perish certain thoughts—because of the irrational fear that thoughts and ideas can lead to calamity. Long before we are sans teeth, sans eyes, sans taste, sans everything, we are without the courage, without the appetite, to fully face the ambiguities of life. We desperately look for certitudes. We bargain with the gods: If I am a good god-fearing person, I will be spared, I will be saved, I will survive and thrive. We lose our ability to challenge the gods, to see that much of life is a joke, to retain our skepticism and cynicism. We can regress to concreteness; we can give up our ability to manage ambiguity and abstractions.

  In science the best way to study a specific brain function is to study its loss. We now know the areas of the brain that are involved in language development, in vision, in memory, in emotion, and in handling stress—all learned from people who have lost these capacities from accidents, strokes, and surgeries. The capacity to handle ambiguity is subtler, but we now have been able to observe human beings—and even laboratory rats—who have been unable to develop this capacity to handle nuances, whose subtle development of cognitive flexibility has been stunted.

  We now have data on adults who began binge drinking in early to mid-adolescence and continued this binge drinking for ten or twenty years. Their forebrains—specifically the orbitofrontal cortex, which uses associative information to envision future outcomes—can be significantly damaged by binge drinking. With this cortical damage, even after years of sobriety, these former or current binge drinkers can fail to recognize the consequences of their actions. Their ability to make wise decisions, to recognize the impact of these decisions, to change course if necessary, is compromised.

  Studies on lab rats confirm these findings. At the University of North Carolina Bowles Center for Alcohol Studies, researchers placed two groups of rats into large tubs of water. The rats were forced to swim around until they found a platform on which to stand—or else drown. One group contained rats that were exposed to and drank large amounts of alcohol during their adolescent and young adult years and then had the alcohol withdrawn for a number of rat-years—an enforced sobriety during a large part of their adult life. The other group—the controls—were never exposed to alcohol. They were lifelong teetotalers.

  Both groups found the platform equally well, equally quickly. But when the platform was moved, the recovering alcoholic rats almost drowned. They kept circling the old location of the platform. They stayed the course.

  The teetotaling control group had no such trouble.

  Fulton Crews at the University of North Carolina has shown that binge drinking in rats diminishes the genesis of nerve cells; it shrinks the development of the branchlike connections between brain cells and contributes to neuronal cell death. The binges activate an inflammatory response in rat brains especially in the hippocampus. Even after long-standing sobriety, this inflammatory response translates into an exaggerated tendency to stay the course, a diminished capacity for relearning, along with maladaptive decision-making. All this occurs without any real change in what we consider “intelligence.”

  In the human brain, according to Dr. Crews, the cingulate cortex shows signs of neuro-inflammation after repeated alcohol binges. Our ability to adapt when the goalposts have been moved diminishes.

  A cautionary tale for all of us.

  So, how do we maintain our ability to embrace ambiguity, to nuzzle with nuance?

  Prostate cancer and its metastases will do the trick.

  In October 2006, with my PSA rising while off treatment, while noncastrate, we found on my CT scan a lymph node in my mediastinum (the upper chest, just under the sternum) that was enlarged and probably cancerous. A few weeks later the thoracic surgeon who had previously referred me for cyberknife radiation removed the lymph node along with a smaller adjacent node. The enlarged node was indeed filled with prostate cancer cells, no doubt trucked over from the prior lung lesion. The lymphatic system and its nodes provided a drainage system for these foreign cancer cells. We now, however, had more definitive proof that the lung lesion, radiated but unbiopsied, was an actual prostate cancer metastasis. Ambiguity gave way to certitude, albeit two years later.

  The second node was perfectly normal, with no sign of cancer.

  No rest for the weary, however. Six months later, with the PSA rising appropriately after going off treatment—we wanted the PSA to rise when testosterone was reintroduced into my system, as a sign that the cancer was still sensitive to androgens—we found another metastasis in my left rear skull. Radiation over a five-day period a few months later cleared it, especially with the cancer cells more fragile and vulnerable when I was on treatment—indeed castrated. The PSA returned to close to zero. These cancer cells remained radiation-sensitive and hormone-sensitive.

  Two years later in November 2008, another mediastinal lymph node was found and quickly removed. This time the margins of the node were not clear; cancer cells appeared to have extended beyond the border of the node into the tissue outside of the node, the muscle and fascia. So, another round of the cyberknife—radiation to the right mediastinum to eliminate any of those errant cancer cells and bring them to justice.

  Prostate cancer has become a literal game. Is it an old video game, a Pac-Man trek? Am I going after space invaders or asteroids? Am I in a carnival shooting arcade? Those damn elusive pellets, they keep reversing directions, showing up in weird places, invading spaces, and gaining on me. Should I reverse course? Should I stay the course? These pac-dots seem to have a mind of their own; they are brilliant in their ability to maneuver, to find a way to survive despite my best efforts to gobble them up.

  A more than worthy opponent. I yearn for the day I can shake their hand and say, “Nice game. We’ll meet again toward the end of the season. Or, we’ll meet again in the playoffs. Or, we’ll meet again next season.”

  But there is no end of the season. There are no final playoffs. There is no next season. The game is endless. Endless, at least until the monsters beat me and kill me. The game is fixed. We know who is going to win. We know who is the ultimate gobbler.

  But I cannot stop my own gobbling. I keep at it compulsively and assertively and passionately. Gobbler versus gobbler. I want to shake my enemies by the scruff of the neck and remind them that if they win the game and kill me, they lose. They die too. It is the ultimate lose-lose game. Let’s call a truce. Bug off, stop the treadmill. But this is an idiotic opponent, an opponent that has no idea about the consequences of its actions, no idea that by winning it is losing, and that by living and thriving it is dying. I cannot talk any sense into it. It has its own moronic compulsiveness, its own instinctive aggressiveness.

  So, I kept gobbling whenever I found a new set of pellets. Another skull lesion, probably some rogue cells from the previous skull metastasis in the left parietal-occipital area, was discovered in December 2009. At the same time, a small metastasis was found in the thoracic spine—the T8 vertebra, to be exact.

  We gobbled up the cells in both spots with the cyberknife in February and March 2010.

  Those fuckers, those pellets, those Aztecs, really know how to hurt a guy. A worthy opponent, yes, but also a mean and nasty opponent. In mid-January, 2011, we found a small metastasis in my brain, in the periphery of my left parietal-occipital region, perhaps again due to some rogue cells not fully killed by the prior radiation treatments to the adjacent skull. Now they were causing real damage—some swelling and edema in that area of the brain.

  This game was getting serious. The fuckers were hitting me where I made my living. I worked with my brain, with my central nervous system, to help others manage their brains and their nervous systems. I was now the wounded healer, not a wounded healer who is truly wounded, a wounded healer unable to heal himself, let alone o
thers.

  I could now sense the terror my physicians were feeling on my behalf. I was feeling it too. The headaches were brutal—I could sympathize with anyone having severe, or even modest, migraines.

  But, voila, within a week after returning to androgen-deprivation, the treatment began to work again. Like magic, the cells went into retreat. The headaches resolved. Prostate cancer or brain cancer, as a simple head cold, metastatic prostate cancer as a simple one-week flu, prostate cancer as a simple gastrointestinal bug. The body and brain recovered quickly. A thing of beauty. Who could have imagined the inventions of the late twentieth and early twenty-first century? Thank you, Dr. Huggins and Hodges, those 1966 Nobel Prize winners for discovering testosterone as the fuel for prostate cancer growth. Thank you, Nick Bruchovsky, for discovering that less castration is better than more.

  Five months later, with the PSA close to zero and the cancer cells at their nadir in strength, I got the brain metastasis radiated. There were no signs of any recurrence in the brain four years later.

  But, whoa. Prostate cancer metastasizing to the brain: Was this not a sign of a terribly aggressive disease? Was this not a sign that you must become castrate for the rest of your life? So said a chorus of physicians I consulted with.

  Yet there was an equally strong chorus telling me to continue the treatment protocol that worked effectively now for twenty-three years. It was still working. The spread of the cancer to the skull and now to the brain represented old disease, twenty-seven-year-old disease that went back to 1984. Before the advent of PSAs, before the advent of easy scanning, men would come into a hospital with prostate cancer everywhere, in their bones, their lungs, their brains. These men had undiagnosed disease that had been messing with them for ten to twenty years without realizing it. The difference here was that I had been more than aware; I had been watching it, scanning it, discovering it, fighting it. Old disease has a way of going wherever it pleases. After more than twenty years, it knows where the best nooks are to hang out. It knows where to find a home.