The First Cell

by Azra Raza

The Greek term pharmakon combines three meanings—remedy, poison, and scapegoat. Aeschylus uses the term in the Oresteia to refer to a drug that can either be remedy or poison; it gets rid of illness either by killing the disease or killing the diseased. When Agamemnon sacrifices Iphigenia, his act epitomizes the dual-edged pharmakon since it cured the problem of winds needed to drive his ships but ended up causing death of the whole family.

  The pharmakon we offered both Omar and Andrew encompassed all three meanings. Prescribed to fight the tumor, chemotherapy and radiation therapy would serve as both remedies and poisons simultaneously. Basically, the treatment would destroy the tumor in one area as new ones erupted in a hundred others in brutal acts of ruthless, diabolical, vicious reciprocity. Of course, there was no hope of any improvement in survival. The poisonous side effects would land them in the hospital for weeks and months, with their mouth and esophagus one big, raw, open wound. The third meaning of pharmakon refers to the ritual of human sacrifice. By testing experimental drugs in humans, knowing little about the risks and benefits involved, yet, hoping to learn from observations made on the current subjects, were we not turning the societal demands, inner desires, conscious concerns, and capricious, arbitrary violence on Omar and Andrew in order to secure a better outcome for others in the future?

  We gave those awful treatments anyway, because the alternative would be no less agonizing. Allowed to run amok, cancer is one of the most painful, horrifying diseases. The fundamental question for both Omar and Andrew related to making this impossible choice—succumb to the ferocity of cancer, or seek refuge in palliative treatments that temporarily control a growing tumor but come with their own set of excruciating side effects? Die from the disease or die from the treatment?

  Which would you choose?

  Why are these two the only choices?

  WHAT IS PAST IS PROLOGUE

  In 2005, Elisabeth Kübler-Ross published her final book, On Grief and Grieving, in which she suggested that families go through the same five stages of denial, anger, bargaining, depression, and acceptance, not necessarily in that order, as do patients given the diagnosis of a terminal illness. The problem turned out to be more complicated, however, as the bereaved suffer emotional bedlam in unpredictable installments rather than an orderly, stage-defined, specific progression, at all times attempting to readjust their place in a new world devoid of the loved one. Being part of the disquieting, vexing, confounding action as the disease flamed and burned its way with primeval savagery, all the characters seem larger than life, observations seem disproportionately significant, every question—no matter how inconsequential—worthy of an answer. The necessary issue ultimately relates to choice. And when the choice involves life-and-death situations, both the potential risk and individual responsibility demand intense emotional, psychological, rational, spiritual input. Was some choice—made under such intense pressure, caught in the whirling vortex of a rapidly progressive, unmistakably fatal disease—the right one? Would clarity come from looking back years later?

  But then hindsight can also pose a problem, as retrospection tends to interpret events in rosier terms, to bring intellectual order to the impossible practical disorder of life. Consider the famous Robert Frost poem “The Road Not Taken,” which addresses this question of choice examined in hindsight. The last, most famous lines of this poem, “Two roads diverged in a wood, and I—I took the one less traveled by, and that has made all the difference,” appear to define the essential characteristic of the intrepid, bold, self-reliant, daredevil, quintessential New Englander. The ideal American, who goes against the grain, exerts individuality by choosing an unusual, risky, unknown, seemingly untrodden path. The key to the poem lies in the middle, where Frost describes the two roads. Being entirely covered with fallen leaves, they were basically indistinguishable. It is only when the poet looks back years later and reflects on the events of his life “ages and ages hence” does he decide that he made the best choice since “that has made all the difference.” Of course, it made no difference at all, but hindsight allows the poet to bring order to randomness, as if the decision that made the difference were rational, logical, evidence-based.

  Although it posed the risk of rationalizing irrational events, I asked a few of the family members of the patients we have met in this book to cast a backward glance on the events. I had them read what I have written about their loved ones, about the gaping holes in our scientific understanding of cancer, about the draconian measures offered as palliation or treatments, about our failure as a society. Knowing all of that, I asked them how they might have reinterpreted or come to view the choices that were made differently. My hope is that given the benefit of reappraisal, reexamination, the information can be methodically re-reviewed, decisions made under intense pressure can be calmly and systematically sifted, reconsidered, questioned, alternate possibilities imagined. From this perspective, the what-if questions might finally be addressed, especially as related to what pain and suffering could and should have been avoided, what can be prevented in the future should such situations arise again and affect the living, understanding what choices would be altered, how to balance external contingencies with inner compulsions. The hope in reliving tragic situations is that it brings a modicum of relief to acknowledge the randomness of life—to concede that no matter how hard one tries, it is impossible to make any sense of the profound anguish their loved ones went through, to allow one to face the unintelligibility of disease, to face death. To accept that the only answer is that there is no answer.

  OMAR

  May 9, 2018

  Naheed (Omar’s mother)

  What I say with complete truth is that at no time… not for a second did I allow myself to believe or think that Omar would actually die… go away from me forever. He takes me to a sofa, sits down and in a casual tone announces that the doctor he consulted suspects something… some “grunge… or maybe a tumor.”

  What happened to me from that moment to the very second that I realized the labored breathing sound was no longer coming from him and, in my hope-filled heart, assumed it could only mean that he had beaten whatever had been bothering him. That he was now better… he had been cured… he was alive… I cannot explain any of this rationally.

  The truth of the matter is that “hope” as much as the cancer is an affliction… of the heart and head in the first case, of the body in the second. Hope latches on to you, crawls in and burrows deep inside your heart and your head. Once it goes, it leaves a cavity behind, a hole that can never ever be filled… and it is this hole, this nothingness, one needs to live with for one’s entire life… and it is this emptiness within this hole that we cover with the proverbial “patthar” [stone].

  Omar would never have accepted any option that required him to accept his fate without fighting it every inch of the way. If it meant chemotherapy, radiation, experimental trials… he would go for it.

  Do you remember how a few hours before he died he discussed a new therapy… stem cell or some other drug that you had discussed with him earlier?

  And as for being told cold mathematical percentages of possible survival for treatments and experimental drugs… there was never a moment of doubt that he would be, must be, had to be counted among the survivors. And why not? Miracles happen, don’t they?

  He might have had his own thoughts that were less happy, but he never conveyed them to me. Except for the single time when he asked me to learn to take care of my own finances… that was it… never after I told him that I would do no such thing and that he would be there to do it for me.

  Should the doctors have held out hope to Omar?… Yes. After all, it took nothing away from him. Yes… it meant painful treatments but it did not mean that there was no possibility of survival.

  I feel that a patient must decide… with or without the family. Unless a patient is suffering beyond the limits of the human body he should be allowed to live in his own universe.

  What researchers must do is what
researchers should. They must work and work and think and feel like a patient or the family… they have to create new medications. New tools for isolating these cells and new concoctions to kill them. If the present laboratory is not equal to the challenge more research is needed… I was struck by how cells from one dish can jump into another in spite of stringent controls… how and why. Cancer is not infectious, is it?

  In the end I think everything that happened to Omar had to happen but for the weak chemotherapy he was given by that first doctor. If any single mistake was made in Omar’s treatment, that was it.

  June 15, 2018

  Farid (Omar’s younger brother)

  Dear Azra Apa,

  Thanks for your message. Each of these questions is harder than the next, but I will try my best to answer them.

  Was my brother ever told that his chances were zero? The answer to this one is a resolute “no.” We definitely weren’t told that his chances were zero. Not only that, the question of chances was studiously avoided by the vast majority of my brother’s doctors, down to the very end of the process. To be fair to them, this was a question I avoided myself in all my heated inner dialogues. It is not that I didn’t know that his chances were, in fact, exceedingly low. In fact, I was extremely surprised when he was given, at the very first meeting, a prognosis of 85 percent. Perhaps the doctor wanted to make him feel better? Unless her confidence was a matter of honor—the honor of medicine in the face of disease. In either case, it had the effect of momentarily boosting his confidence and casting doubt on what I had gathered.

  We went on a walk, he told me not to worry: he was going to fight this thing, he said. Did he really believe this in his heart, or was this an act of fraternal compassion? Or is it that these two possibilities really cannot be separated? In either case, two months later, he was completely shaken upon being told (by his oncologist at NY Hospital) that the actual figure was 75 percent. In many ways, this figure was even more inaccurate than the 85 percent that was given to him at NY General Hospital since, in the in-between period, it had become quite clearly apparent that the methotrexate wasn’t working. Why, then, did the doctor give him that figure? Was this blatant lie an act of kindness? And why did it not achieve its effect? I remember Mursi asking him what the difference was between 85 and 75 percent. But in his mind, that 10 percent plunge in life chances required a categorical adjustment.

  It is strange the effect that numbers can have. Numerically, at least, I knew more about his chances than did others, but still I was enraged beyond words when friends or family would say he was “dying.” I was enraged on his behalf and enraged because it was emotionally unrealistic even though it was manifest that the cancer was invading his body—cell by cell, organ by organ—to suggest that my brother was “dying.” Here was a man who produced a list of “100 Books to Read Before You Live”—because (as he said) “‘before you die’ is just too depressing.” This was also a man who insisted on going to see The Cherry Orchard—not a cheerful play exactly—knowing that his days were numbered. “No point in not living while I’m still alive,” he said when this choice was briefly questioned. Which is to say that this was a man whose idea of living wasn’t to be cheered up but to face life in all its intensity. Another reason why the bucket list wouldn’t have worked. My point is that he was in his prime—married to the love of his life, surrounded by loved ones in the place that he loved more than any other place in the world. He refused to be pitied or mourned preemptively by those who loved him. And yet, of course, he was very much dying, if that word has any meaning at all.

  All this is to say that had his doctors refused him treatment, he would have fought back and refused their refusal. The thing is: at least for him, he—his life—wasn’t the only thing at stake. Also at stake was science and medicine, scientific progress, and the scientific method. To give up on himself was to give up on science—and that wasn’t really possible in his case. He wouldn’t have enjoyed his bucket-list world tour knowing not only that the end was coming, but also knowing that science had failed. Sometimes I wonder if one of the reasons that he didn’t follow the advice for a far more radical approach was because that advice was, in a way, an admittance of that failure.

  I do think it would have been the ethical choice to tell him that his chances were nil. Perhaps the emotional pain of hopelessness would have been even more excruciating than that long succession of horrific surgeries? Still, I have to wonder why his doctors were quite so ready to operate if they knew that his chances were actually nil. I have to wonder even more why they couldn’t have told him clearly that a radical surgery or amputation was the only real chance for survival. Even if that chance was a fraction of a fraction, it would have helped to hear it from them. Did his surgeons really not know this? If not, why not? If yes, then why did they stick to their protocol? And why did they become so condescending—even aggressively mocking at times—at any point this decision was questioned?

  I am sorry to answer your questions with questions. As for all the other Omars, it seems to me that the ethical choice would be to inform the patient of their certain death. But if that death is all but certain, it behooves the institution to let them know that the course they’re following has no chance of succeeding. But more than anything, the ethical choice is to accept, at the deepest level, the fallibility of institutions and the imperfection of epistemologies that are cherished and defended aggressively. After all, it is this fallibility which explains why these protocols are even needed.

  Love,

  Farid

  October 29, 2018

  Sara (Omar’s sister)

  One of my last conversations with Bhaya [brother] was in Brooklyn. We were standing at a vantage point, the vista of Prospect Park before us—he turned to me and said, “Do you think Heaven looks like this? I can’t imagine anything better.”

  As his “Little Sis,” I probably read him differently from others; it is of course the prerogative of all younger siblings to be able to read through their older ones. I believe that Bhaya knew his prognosis, he knew the chances of survival were very small, and he knew the chances of imminent death were high. He knew that radical surgery was his best chance of survival. The complexity of human relations does not of course translate this knowing on his part in any linear way to the decisions that he made for himself.

  This is partly because there is one quality of Bhaya that defined how he dealt with his illness and his loved ones through this time in his life—it is a very rare quality but one which defined who he was in a very profound way—the ephemeral lightness with which he could be selfless, loving, protective, generous. Please don’t think my brother was a saint; he was as exasperating a sibling as can be, but he was an exceptional human being in so many ways, and this was one of the ways. If we had acknowledged this quality vocally, if it had been part of our narrative about him and how he was coping, perhaps we would have given him a chance to have an honest conversation with us.

  I wonder sometimes, what would he have chosen to do if we were the kind of family that spoke collectively and openly—imagine us sitting around a dining table, his family and friends there, and his family saying to him: “Beloved, think of yourself and not of us. Here are your options. Option 1: radical surgery. Option 2: palliative care. Option 3: multiple surgeries and chemo and radiation. This is what all three mean for you. We are here to support you in whichever one you want to do. We are here to support you if you change your mind. We love you enough to not only help you fight this, but to also support you if you choose not to fight this. You tell us what you want to do. We are here for you. Talk to us, please. Share your fears and thoughts.”

  I would like to say to families, friends, doctors, nurses, and social workers out there—have that conversation. Nobody dies because of a conversation. Nobody chooses physical pain over death because of a conversation. No one will give up on life, because you have put choices before them. Please don’t be a coward.

  Don’t do what I did, w
aiting for someone to bring up palliative care and even assisted suicide, for me to share the research and options I had explored for him, to give me a crutch, an opening to have that conversation.

  For me, we all failed Bhaya. Collectively, we forgot the most important quality of love—selflessness and compassion.

  July 10, 2018

  Mursi (Omar’s wife)

  It never occurred to us that Omar would die. We did not talk about him dying ever. If we knew how hopeless his prognosis was, we would have decided to have children. I did not want kids. He did. One month before his diagnosis, we discussed the topic and decided to have kids. But then he was diagnosed even before we got married, and then of course too much was happening to talk about it. If we knew he had no chance of survival, we would have thought about kids.

  A second thing we would have done differently, had we known, is travel more. In 2008, after multiple lung surgeries, we decided to go to Greece for our honeymoon. Omar didn’t even want to tell the doctors because he did not want to be told not to go. They would have said his immune system was suppressed and it was too dangerous for him to travel. We had a wonderful time! He never complained throughout the trip even though of course there were days when he had pain, but the joy we had was unparalleled. We should have taken more trips like that.

  Another thing is related to all the surgeries he had. After the very first one, we were told the cancer cells were already in the veins. That means it had already spread. Yet the doctors did not tell us what that spelled as far as his prognosis went. We were always talking about chances; one day it was 85 percent, and next time it had slipped to 75 percent. Even if they did, it did not register. Omar definitely, and all of us also, had all this hope. This one more treatment might do the trick. This is why we kept going. The later surgeries and pneumonia were terrible for him. At some point after the seventh or ninth surgery, we questioned why he needed so many operations. Thinking back, I can say for sure that if I was in his shoes, I would not have gone through so many surgeries. They were too painful.