A Salamander's Tale

by Paul Steinberg

  Computer simulations of my cancer, done by some colleagues of Nick Bruchovsky in Japan, indicated that the cancer cells were still mostly hormone-sensitive. Over time some hormone-insensitive cells evolved. No surprise there. But by doing the treatments intermittently, I might be able to retain a maximum level of hormone sensitivity for a maximum period of time.

  Game on. You bastard pellets, make my day. Go to my brain, go wherever you please. You have long ago gone to my pelvis, my penis, my brain, and in my midsection. You have intermittently castrated me, anguished me, created catastrophe for me. I am still ready for you. I can still withdraw the androgens you rely on, I can still radiate you bastards.

  I may at times be a shell of my former self. But who isn’t? I have still been a battling shell, albeit an occasionally baffled shell. Those bastard cells have had to take me seriously, as I have taken them. Two serious opponents going at it in a serious way. There would be no tie games here, no games in which no one wins and no one loses.

  I would keep scanning the game board, my body—looking for those bastard cells to poke their heads out of strange nooks. But these were oligometastases, limited metastases, only one or two at a time at most, not a whole host of them ready to knock me off. They continued to be findable, seeable, treatable. A thing of beauty.

  Vigilantism has paid off. My vigilantes were the radiologists and their technicians—the CT scanners, the MRI studiers, the bone scanners. We scoured the pictures looking for an accretion of those pellets. We aimed, shot, and fired. We gulped; we gobbled. No sympathy for those devils.

  So, how was I dealing with ambiguity and uncertainty? Decently, I guess. Was I staying the course too insistently? Was it time to change course—and was I unwilling to do so? Where was my cognitive flexibility? Just because something worked for twenty-three years did not mean it was the route to continue on.

  All I could do was rely on the wisdom of crowds, to get input and feedback from various parts of the country, from prostate cancer cowboys and from prostate cancer traditionalists, from eccentrics and reactionaries.

  Here’s the rub: Even my questioning and confrontational internist had begun to believe in what I had been doing for the past two decades, to the point that he wondered, “Why would you change now? You have defied all expectations. Why would you go back to the traditional route? Do it your way.”

  My way? I did not have a specific way. Each new metastasis required some new rethinking. Is it time to change directions, or do I stay the course? Am I circling around the old location of the platform in a huge tub of water—with the platform nowhere to be found? Am I about to drown?

  All I could do was stick to two principles: Let’s keep the cancer hormone-sensitive as long as we possibly can. To be able to shrink tumors in the brain or lungs or bone in a matter of a week or two was astounding.

  And let’s keep using the radiation-sensitivity of the cancer as a weapon ready to be invoked at any time. Another thing of beauty: With the androgen deprivation the cancer cells become dormant, withered and half dead, ready to come alive again with the return of testosterone. With radiation the cancer cells perish, never to be seen again. Their demise, a thing of beauty.

  In the meantime I tried new ideas, new courses of action. Thalidomide, but no effect. Then Revlimid, a derivative of Thalidomide, but no effect. Wonderful in theory: The idea was to prevent the arms and legs of those fetal and undifferentiated prostate cancer cells from growing, to immobilize those cells and kill them off. Thalidomide had been used as a sleeping pill in the 1950s until it was recognized as a drug that caused horrific congenital teratogenesis—malformations to the arms, legs, eyes, ears, and heart in a developing fetus. We now know that Thalidomide blocks the development of blood vessels and angiogenesis so that limbs and organs cannot develop properly.

  All Thalidomide did for me was put me to sleep. A fine sleeping pill. But it did not stop the rise in PSA when I was off the hormonal blockade, nor did it stop the development of the occasional metastasis.

  In June 2007, a few months after my first bony metastasis had been found, an oncologist recommended I try an intravenous injection of zoledronic acid, otherwise known as Zometa. A new bisphosphonate known to shore up and strengthen bone, this drug showed some promise in preventing bony metastases in breast cancer. Why not give it a try with prostate cancer?

  A disaster for me. Within forty-eight hours I developed a flu-like syndrome that lasted for months. Fatigue and muscle aches—I could barely get my head off a pillow. I was immobilized and the symptoms showed no sign of letting up.

  The oncologist refused to believe that the medication could have caused this syndrome. “It must be a return of your cancer; you must have a spread of prostate cancer throughout your body. You have cancer-induced cachexia.” She did not have to explain this term. My PSA was close to zero, but she was convinced that I had a wildly spreading prostate cancer that was now suddenly end-stage, causing a profound loss of energy and my impending death. She insisted I get more scans to prove her point. She was ready to put me into hospice care.

  Her logic was baffling. My PSA was virtually zero. I had just had an injection of some new medication whose side effects were not well-known. I had no choice but to become my own doctor again.

  I called the editors of The Medical Letter, a biweekly four-page newsletter about pharmacology that I had been subscribing to since medical school. They kindly gave me the names of two of their consultants who had been using Zometa experimentally and extensively to help with osteoporosis.

  One of them gave me the scoop: “We’ve been using Zometa on older women and some men with osteoporosis here at the University of Colorado Medical Center in Denver. Medicare has designated our center as a place where we can try Zometa and get reimbursed for its use. No other place has had the extensive experience we have had with the drug. The Food and Drug Administration, the FDA, has not approved Zometa yet for osteoporosis, but the approval should be coming in the next six to twelve months (in fact the drug was subsequently approved under a new name “Reclast” specifically for osteoporosis). We’ll have even more experience at that time.

  “We have already had four patients who have had your flu-like syndrome. It can go on for months. The headquarters for Novartis—the drug company that makes Zometa—is located in Basel. They have seen one or two cases like yours in Switzerland.

  “Your only choice is to use high doses of steroids, at least 60 mg. of Prednisone per day for an indefinite period of time.”

  The steroids worked; I was able to function. But a bone researcher I talked to on the phone reminded me that anything that gets into the bone will stay in the bone. The drug will leach out slowly but will stay in my bones for the rest of my life.

  I had a choice: Fury vs. Fear. I chose fury. These bisphosphonates, the Colorado guy explained to me, were chemicals that were initially used to prevent soap from sticking to glass. Great for car washes, great for the bum on the street who was washing your windshield, great for the glass door of your washing machine, great for the bones of many people.

  A disaster for me.

  My fury was not so much focused on the reasonable experimental effort to prevent bone metastases—what the hell, give it a try. My fury was based on abandonment—a physician abandoning me when I had a brutal side effect that she refused to acknowledge. It was her unwillingness to admit that the medication could be causing this cachexia. It was her claim that this cachexia must be a bizarre zero-PSA wild spread of prostate cancer. It was her implicit insistence that I had to be my own doctor—to figure out if Zometa had a side effect of severe cachexia and what antidotes to use for this cachexia.

  After all the years of dealing with prostate cancer, I had the confidence and hubris to be my own doctor. I also had the kindness of strangers—the physician at The Medical Letter, the consultants in Colorado and Maine whom he referred me to. I had access to steroids which I used successfully for five months, then tapered and discontinued, not without difficu
lty. But within eight months of the Zometa injection, I was back on the tennis and basketball courts; I was back on track.

  Nothing like iatrogenic ambiguity, nothing like doctor-induced dubiousness. Will I become gun-shy and avoid new experimental efforts to deal with prostate cancer and its inevitable metastases? Will I continue to take some calculated risks? Will I have physicians who will not abandon me at the first sign of problems with these experimental efforts?

  Time will tell.

  As John Maynard Keynes once asked, what place is allowed for “non-numerical factors” in predicting the future—the inventions and breakthroughs that are entirely unpredictable? Expect the unexpected—and if you live long enough, you can see the unexpected unfolding. In prostate cancer the breakthroughs have had little or nothing to do with treatments. Yes, there have been some new wrinkles with androgen blockers, some new drugs in the pipeline that can block the effects of testosterone and dihydrotestosterone. And there are new wrinkles in how radiation can be delivered, with the cyberknife and other such tools that can deliver focused radiation with a minimum of collateral damage.

  Instead, the real inventions have come in the way we now can find and diagnose tiny metastatic prostate tumors, even when the PSA is as low as 0.5. Up until recently we only had bone scans that allowed us to look for tumors in bones, but not at a highly sophisticated level, and we had CT scans to look at soft tissue, including lymph nodes and lungs and other areas of the body. If a lymph node was enlarged, we might want to biopsy it to determine the type of cells sitting in that node. Likewise the lungs: only a biopsy could tell us definitively what a lesion in the lungs might be made of, benign or cancerous tissue.

  We now have new forms of carbon, specifically a radioisotope called C11 which can be put into chemicals such as acetate and choline, to form C11-acetate and C11-choline. Prostate cancers take up these chemicals—and suddenly prostate tumors light up. A C11-acetate positron-emission tomography (PET) scan can then be superimposed on the old technology, a bone scan—and one can then see which tiny lesions reflect true and definitive prostate lesions.

  We can then do radiation treatment when the tumor burden is quite low. And, conceivably, we can then find a way to stay off the androgen blockade—chemical castration—for a longer period of time. This longer period of not being castrated may allow the cancer cells to remain hormone-sensitive for a more sustained period.

  In December 2013, a C11-acetate scan in Phoenix, Arizona, was able to detect tiny prostate metastases in the L3 region of my spine and in my left parietal region of my skull, even with my PSA at a very low level. Within six weeks we were able to radiate the lesions with the cyberknife. The lesions—gone and kaput. All I can continue to do is be vigilant and wary.

  Even more sensitive diagnostic tools are in the pipeline in Germany. In Heidelberg and Munich, the radioactive isotope Gallium 68 is being used in PET scans along with the C11 PET scans. The sensitivity of these scans and the brilliant and psychedelic images are remarkable.

  Road trips to Phoenix, Arizona, as well as to Heidelberg or Munich, may be very much a part of my future.

  Seeing metastatic disease at its inception, seeing disease when the tumor burden is low, seeing disease before the cancer has become widespread makes all our interventions more effective. Indeed a virtuous circle based not on better treatments but on better diagnostic tools.

  A strange thing has happened to my inner life in the past year or two. I have lived longer than I ever could have expected. Unknowingly I had internalized those messages from physicians in 1984 that I had less than a 50 percent chance of living five years and a very small chance of living ten years. The power of negative thinking: Little did I know that these guys had done me a favor, that if I lived longer than expected I would be mindful and receptive to every added second, every added moment of my life, that I would be able, I think, to face death a bit more readily, to go a bit more quietly into the good night, given that I had been expecting to die twenty years ago, ten years ago, five years ago.

  I am proud to be living on borrowed time. Every second of borrowed time is precious.

  When I first went back to work in 1984 a month after surgery, a medical colleague gave me copies of Stephen Levine’s books, including Who Dies? An Investigation of Conscious Living and Conscious Dying and Healing Into Life and Death. The books at the time helped me desensitize myself to death—to my own death and dying, to the life and death of everything in this universe. All I can remember from that time is the notion that every other word in each sentence seemed to be “death” or “dying” or “loss” or “grief.” A great way to desensitize oneself to the ultimate fate: Die, Die, Die.

  Only after thirty years of facing prostate cancer hell can I appreciate a piece of wisdom from Who Dies?

  Once someone asked a well-known Thai meditation master, “In this world where everything changes, where nothing remains the same, where loss and grief are inherent in our very coming into existence, how can there be any happiness? How can we find security when we see that we can’t count on anything being the way we want it to be?” The teacher, looking compassionately at this fellow, held up a drinking glass which had been given to him earlier in the morning and said, “You see this goblet? For me, this glass is already broken. I enjoy it, I drink out of it. It holds my water admirably, sometimes even reflecting the sun in beautiful patterns. If I should tap it, it has a lovely ring to it. But when I put this glass on a shelf and the wind knocks it over or my elbow brushes it off the table and it falls to the ground and shatters, I say, “Of course.” But when I understand that this glass is already broken, every moment with it is precious. Every moment is just as it is and nothing need be otherwise.

  Stephen Levine goes on to point out that when we recognize our body is already broken, when we recognize we are already dead, “then life becomes precious and we open to it just as it is, in the moment it is occurring.”

  Yes, my sex life is dead at times; my penis is dead; my pelvis is dead; I am dead. When my pelvis comes back to life, it is more precious than ever. I pinch myself—I am still alive. Yet when I acknowledge I am dead, my children are dead, Helen is dead, how precious they and I become. I can live more readily with fear, with doubt, with uncertainty, with ambiguity. The worst has already happened. I am dead, and everyone I love and care about is dead.

  My living with my brokenness for thirty-plus years allows me to joke about death—just like a teenager or young adult. Fuck it all, my pelvis is already broken or dead. At the same time, everything I love is more precious, more a source of delight, more a source of comedy and joy.

  The treasures: Helen, my daughters who are now in their early thirties. The thirty-plus years I have survived, they have survived and thrived as well. Longevity counts a lot. Having a husband around, having daddy around—not daddy-o, not a failed daddy, not a dead daddy, even one with mythic qualities in his premature death—counts a lot. My daughters may understand the fragility of life more than most thirty-somethings.

  Stephen Levine again: “Taking each teaching, each loss, each gain, each fear, each joy as it arises and experiencing it fully, life becomes workable. We are no longer ‘a victim of life.’”

  Levine and his wife Ondrea apparently spent a year acting as if that year was the final year of their lives. I would assume that for them everything became precious during that year—perhaps too precious.

  What happens if you live thirty years as if each year is your last—without having to pretend it is your last, when that sense of its being your last year is palpable, not theoretical? What happens if each day, each birthday, each new year’s celebration—the Roman calendar new year, the Chinese new year, the Jewish new year—all become precious milestones? The millennial milestone, the year 2000, becomes a particularly precious achievement. I have lived to see Y2K, and it is much more for me than a computer glitch.

  Yes, precious and celebratory and comical—I have become one of the many here among us that feel life
is but a joke. A precious joke, a joke I cling to, a joke I hope I can let go of when the time comes.

  Who knows? When the time comes, despite my supposed desensitization after more than thirty years, I will be as terrified as anyone, distraught, confused, refusing to let go, greedy for more.

  Time will tell.

  As a psychiatrist, am I a wounded healer or merely wounded? Perhaps only my patients can answer that question with some degree of objectivity. I can say that I understand the wave action of life better than ever before—that though filled with particles, we are also waves at the same time, that we are riding these waves—waves that we may or often may not have control over. Necessity versus free will—a predetermined destiny versus some control over our destiny. Somehow we can meld the two together. Go with the flow and alter the flow.

  With every blessing there is the seed of a curse; with every curse there is the seed of a blessing, often, in the words of Winston Churchill as he was about to lose the 1945 election in Britain, a very, very “well-disguised blessing.”

  I can reassure my patients that, though the waves have buried them, though the undertow has submerged them, the waves may also allow them to rise again. The key is to stay alive, to try to stay upright. If you can live long enough, you can begin to feel the power of those waves, to experience the falls and the rises, to experience genuine awe at the hurricane action of the waves alongside at times the calmness of those same waves.

  “Yes,” I can say, “This depression or this panic or this grief can seem interminable. This severing of your children from you can seem unending. This horrific marriage can seem to have an unending impact. Yes, all bad things will come to an end. And, yes, all good things will come to an end too.”