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THE ART OF ONCOLOGY: WHEN THE TUMOR IS NOT THE TARGET

Why Me?
By David P. Steensma

HY ME? WHY AM I the one who has to suffer like this? How did I get this rotten disease, anyway? Hard questions like these are among the most common inquiries directed to oncologists and others who care for seriously ill patients. Reective people of all professions and confessions struggle with such troubling questions, for suffering knows no vocational or denominational boundaries. Probing questions about the root causes of human misery are both ancient and profound, and they are extremely difcult to addressparticularly within the narrow connes of the typical brief encounter between a physician and an aficted patient. At the deepest level, Why me? remains unanswered and may ultimately be unanswerable. Why me? is a multilayered question. Some patients who raise it are simply asking after the mechanism of their diseasea limited inquiry better described by the question How me? As biomedical science progresses and disease pathogenesis becomes more fully understood, such narrow questions will be increasingly answerable. But a simple understanding of disease mechanism is clearly not enough. Even when epidemiologic associations have provided unambiguous clues to the source of a diseasethe connection between lung cancer and cigarette smoking, for instance and even when this has led to a mechanistic explanation cigarette smoke contains potent genotoxins that can replace the carefully orchestrated harmony of the cell cycle with an atonal scoreimportant questions that blur the distinction between How me? and Why me? remain. Why do some people who smoke get lung cancer while other heavy smokers remain healthy? Why do some people who do not smoke at all still develop the disease? A detailed understanding of host susceptibility patterns may clarify molecular murkiness, but cant explain away the seeming injustice. Family histories of disease and other explanations dredged from the gene pool illuminate the shallow depths of the question How me? Genetic predispositions may explain much of the distribution of cancer and other diseases, but oncogenesis, like other brands of pathogenesis, is clearly multifactorial. Yet the term multifactorial can make disease causation sound like an elaborate conspiracy, and sufferers of genetic lesions still have many questions: Why was I born into this particular family? What caused this fateful accident of birth? Was there divine intention, or

perhaps divine neglect? Or is my blighted existence merely the result of a DNA mixing experiment gone awry, just plain dumb luck, the result of a random defective sperm in a cohort of thousands who just happened to win the oocyte lottery - a senseless, simply stochastic event in a haphazard and uncaring universe? Our current understanding of the workings of the material world is strictly limited. This check on scientic hubris is important to keep in mind, as the mechanistic questions behind How me? can easily be pushed beyond their rational limits, where they promptly break down. Molecular medicine can be reduced to organic chemistry, which is in turn built on the framework of physical chemistry. Physical chemistry seems robust at rst glance, buttressed as it is by the paradoxical truths of quantum mechanics. But even quantum mechanics can only be pushed so far before the appearance of quantum foam before the calculations of physicists begin to yield absurd results, or Heisenberg-style uncertainties sink the whole enterprise into the abyss of irrationality. At present, then, at the most fundamental level of How me? there is only darkness. Answering How me? can be extremely hard; Why me? is something else altogether. Behind Why me? lurk tough, gristly philosophical problems that have occupied sages throughout the ages. That suffering must have a source seems to have occurred to perplexed observers very early in the history of our species. Ancient concepts of disease often put the culpability for illness squarely on the shoulders of the sufferer, either for breaking a moral code (sometimes unwittingly), running afoul of an evil spirit, offending a member of the pantheon, or toying with a taboo substance. Blaming the victim is a very old pastime. These venerable concepts remain vigorous down to the present day. As the late Carl Sagan pointed out, despite progressive enlightenment by the ickering candles of science, superstitions remain pervasive in the modern, demon-haunted world. Simple ignorance aside, even those of us who still cling to religious beliefs must realize

From the Mayo Clinic, Rochester, MN. Address reprint requests to David P. Steensma, MD, Mayo Clinic, 200 First St SW, Rochester, MN 55905; email: steensma.david@mayo.edu. 2002 by American Society of Clinical Oncology. 0732-183X/02/2003-873/$20.00

Journal of Clinical Oncology, Vol 20, No 3 (February 1), 2002: pp 873-875 Downloaded from jco.ascopubs.org on July 21, 2012. For personal use only. No other uses without permission. Copyright 2002 American Society of Clinical Oncology. All rights reserved.

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that when misapplied, these can cut deeply. A robust, life-afrming faith that eschews the easy but hollow answers can provide profound comfort and reassurance in the most difcult of times. Yet some sufferers with spiritual convictions may worry that their torment is directed from above because of their own wickedness, adding guilt and angst to more palpable, physical agonies. A group of self-righteous people once asked about a Jewish man born blind: Who was the one who sinnedthis man or his parents? Such questions leave limited options for understanding suffering: either the burning heat of human misery is redemptive, a hot crucible to rene spiritual dross, or it is simply a foretaste of the res of hell. Families and friends of patients sometimes ask Why me? twice: once for their own loss and then again, vicariously, for the victim of disease. Caution is in order, for there is a risk: Why me? can easily be transformed from a valuable tool for introspection into a treacherous implement of inquisition. We may wonder: did the victim do something to provoke the evil? Did he commit some secret sin of which we are as yet unaware? Is her catastrophe simply due to neglect? Was there something the sufferer failed to do, some preventative measure she forgot to take? Or, once again, was the disaster nothing more than the random damnation of an uncaring capricious universea universe of which we can only say (perhaps ironically): There, but for the grace of God, go I? Those who care about people who succumb to disease may learn what survivors of tragedy know: survivors guilt can be gnawing. Why couldnt I, an old man who has lived a full life, have died of that awful cancer instead of my beautiful, energetic daughter with her young children and so many reasons to live? Many have highlighted the supposedly salutary aspects of suffering, as if suffering were like exercise where a few moments aching can bring about long-lasting strength and tness. Marcel Proust once wrote, Happiness is benecial for the body, but it is grief that develops the powers of the mind. Martin Luther King, Jr, who was in a position to know, believed that unearned suffering is redemptive. And George Eliot argued, Deep, unspeakable suffering may well be called a baptism, a regeneration, the initiation into a new state. But if suffering ever brings about something better, it must do so exceedingly rarely. Most serious afictions leave wounds so wide and deep, so raw and painful and purulent, that they can only ever heal by secondary intenta slow, fragile process that can take years. Such lesions always leave ugly scars; those who have healed can never forget the wounding. And many patients with cancer simply dont live long enough for the craters to ll. It seems no accident that linguistic evidence points to the painful story of Job, the most detailed exploration of human

DAVID P. STEENSMA

suffering in the Judeo-Christian canon, as the most ancient of Biblical books, for the questions it addresses are very old and very difcult. Job, condemned to suffer as part of a Satanic experiment, has to bear not only the results of this demonic game but also the probing questions of his ngerpointing friendsa reminder that simple silence is often good advice for those who sit at the bedside of the suffering. Understandably, Job nds it difcult to see God through his veil of tears, and his isolation intensies his grief. The Book of Jobs nal explanation of the theodicy question is both reassuring and dissatisfying. God himself appears out of a thundercloud with a mildly scolding tone: Who are you mere mortals to question the mind of God or the ways of the universe? Where were you when the foundations of the vast cosmos were laid? How dare you even ask such questions as Why me? This was not the rain cloud that we thirsty sufferers were looking for. But perhaps, like the 3-year-old who wears out her parents with Why? questions, we are warned to stop pestering because we wouldnt understand the answers anyway. Today, prophets and soothsayers are rarely consulted; instead, when there are important questions to be asked, answers from the Internet must sufce. An electronic search of the National Library of Medicine reveals that this is a shoddy substitute. Inputting the text string Why me? into the MEDLINE computerized search engine returns a cluster of subjects considered relevant by the Medical Subject Headings staff at the National Library of Medicine. Taken together, these choices make a curious potpourri. Attitude toward health and neoplasms head the list. Next up are two specic cancers that always receive heavy media attention, increasing their emotional weight: breast neoplasms and leukemia. The rest of the list includes an apparently random collection of sudden catastrophes or psychologically difcult problems: myocardial infarction, mood disorders, multiple abnormalities, and cardiac arrest. The nal item returned by the MEDLINE search, induced abortion, is jarring and begs the question of just who is the one asking Why me? There is no question that patients with breast cancer and leukemia suffer deeply, but they do not have a monopoly on asking Why me? nor are they granted any special dispensations. Instead, I found it surprising that orphan diseases or rare diseases did not make it onto the MEDLINE Why me? list. Perhaps this simply reects my experience with the trafc in exotic diseases characteristic of a large referral medical center. Questions of causation and their deeper counterparts seem especially troublesome for those aficted with rare afictions of uncertain provenance. These strange disorders may be equally mysterious to patient and physician. When patients make such unusual diagnoses public,

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THE ART OF ONCOLOGY: WHEN THE TUMOR IS NOT THE TARGET

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matters of religion. As an old joke runs: Wherever there is one Dutch Calvinist, there is sure to be a theologian; if two Dutch Calvinists are gathered together, a religious denomination will develop, but when a third Dutch Calvinist is added to the mix, a schism over doctrinal issues and matters of conscience is certain. Some of the 20-odd subgroups of Dutch Calvinists in North America groups that the rest of us half-jokingly call Dark Calvinists, analogous to Garrison Keillors Dark Lutheransshare a world view built on the foundation of an angry, vindictive, and vengeful God. Among other severe strictures, such sects forbid their members to receive vaccines. The message is clear: Who are you mere mortals to mess with providence or resist your fate? It is the duty of you worthless humans to take whatever youve got coming to you. Disease, famine, horror and sorrowyou deserve worse. My grandfather was born into one of these dour and fatalistic communities, and he was not inoculated. In midlife he wanted to travel to Europe but couldnt obtain the appropriate papers without proof of vaccination. His own religious views had softened over the years, so he submitted to smallpox vaccination. The next day, he suffered a myocardial infarction and nearly died. The community of his birth responded with smugness, barely able to refrain from pointing ngers: We told you something like this would happen. My grandfather recovered his good health, and several decades passed without any further cardiac problems. In his 80th year, he developed fatigue and shortness of breath, and assumed his coronary disease had returned. But after a few tests, his doctor had more ominous news: acute lymphoblastic leukemia with multiple adverse features. His response as an avid golfer was predictableIt sounds like an unplayable lieand he elected palliative, hospice-based care. But his response as a Dutch Calvinist was telling of the lingering effects of his childhood. Wanting to avoid the mistakes made by Jobs friends when I called on my grandfather after learning the news of his diagnosis, I simply stated my condolences and my love for him and sat down to listen. His rst statement was an abrupt Well, why not me? After all, everyone has to die of something. My calculated silence was drowned in speechlessness, and I wept.

they often elicit much brow-wrinkling and teeth-gnashing but little real understanding from friends and family. How many laymen have ever heard of a pheochromocytoma? If Why me? is a cry of the spiritually parchedthe groan of wanderers in the dry Waste Land, waiting impatiently for the life-giving rain of healingthen from a physicians perspective, it can also be a call for consultation. In the institution where I work, I am fortunate to receive help not only from talented chaplains and counselors but also from a unique senior oncology nurse who is blessed with the Gift of the Right Word. When others are left speechless, this nurse always seems to say the best possible thing, and she also knows instinctively when to be silent. She distills this rare talent with warmth and the practical wisdom distilled from decades of experience; the resulting brew is a potent salve for the wounds of the aficted. Of course, she cannot always provide existential analgesiasome torments are simply beyond human healing but she can work transformations, and I always call her in on the hardest cases. In the clinic or in the hospital, as I sit at the bedside of a suffering person, my own response when asked difcult questions such as Why me? is rst to clarify what the patient or family member is really wondering. If the question is simply How did this happen? I try to be as specic as possible, all the while confessing medicines shortcomings. But if the question is really Why me? I simply state my ignorance and then indicate my willingness to listen. Ive come to nd that most patients who ask Why me? dont really expect an answer from me, and some people only ask the question as they search for some semblance of order in the midst of the boiling chaos of a fresh tragedy. For certain people, asking Why me? can lead to a moment of great catharsis, a time when the unanswerable questions yield to more productive inquiries: What happens now? Is there anything we can do? Sometimes such conversations can take an unexpected turn, as a recent, very personal episode demonstrated. I was born into a stern tradition of immigrant Dutch Calvinism the scion of a group that ed the Netherlands in the 19th century because of concerns that the state church was becoming too liberal. Dutch Calvinists in America remain a headstrong and fractious lot, particularly when it comes to

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