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

W h y M e ?

By David P. Steensma

W HY ME? WHY AM I the one who has to sufferlike 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. Reflective people of all

professions and confessions struggle with such troubling

questions, for suffering knows no vocational or denomina-

tional boundaries. Probing questions about the root causes

of human misery are both ancient and profound, and they

are extremely difficult to addressparticularly within the

narrow confines of the typical brief encounter between a

physician and an afflicted 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 un-

ambiguous clues to the source of a diseasethe connection

between lung cancer and cigarette smoking, for instanceand 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 dis-

tinction 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 explanationsdredged from the gene pool illuminate the shallow depths of

the question How me? Genetic predispositions may ex-

plain 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 scientific 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 inturn built on the framework of physical chemistry. Physical

chemistry seems robust at first 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 foambefore 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 occupiedsages 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 flickering 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

873Journal of Clinical Oncology, Vol 20, No 3 (February 1), 2002: pp 873-875Downloaded 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-affirming faith that eschews the easy but hollow an-

swers can provide profound comfort and reassurance in the

most difficult of times. Yet some sufferers with spiritual

convictions may worry that their torment is directed fromabove 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 understand-

ing suffering: either the burning heat of human misery is

redemptive, a hot crucible to refine spiritual dross, or it is

simply a foretaste of the fires 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 imple-

ment 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

fitness. Marcel Proust once wrote, Happiness is beneficial

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 aboutsomething better, it must do so exceedingly rarely. Most

serious afflictions 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 fill.

It seems no accident that linguistic evidence points to the

painful story of Job, the most detailed exploration of human

suffering in the Judeo-Christian canon, as the most ancient

of Biblical books, for the questions it addresses are very old

and very difficult. 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 finger-pointing friendsa reminder that simple silence is often

good advice for those who sit at the bedside of the suffering.

Understandably, Job finds it difficult to see God through his

veil of tears, and his isolation intensifies his grief. The Book

of Jobs final 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 pester-

ing 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 suffice. 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 specific cancers that always receive heavy media

attention, increasing their emotional weight: breast neo-

plasms and leukemia. The rest of the list includes an

apparently random collection of sudden catastrophes or

psychologically difficult problems: myocardial infarction,

mood disorders, multiple abnormalities, and cardiac

arrest. The final 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 dispen-sations. Instead, I found it surprising that orphan diseases

or rare diseases did not make it onto the MEDLINE Why

me? list. Perhaps this simply reflects my experience with

the traffic in exotic diseases characteristic of a large referral

medical center. Questions of causation and their deeper

counterparts seem especially troublesome for those afflicted

with rare afflictions of uncertain provenance. These strange

disorders may be equally mysterious to patient and physi-

cian. When patients make such unusual diagnoses public,

874 DAVID P. STEENSMA

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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 impa-tiently for the life-giving rain of healingthen from a

physicians perspective, it can also be a call for consulta-

tion. In the institution where I work, I am fortunate to

receive help not only from talented chaplains and counsel-

ors 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

afflicted. Of course, she cannot always provide existential

analgesiasome torments are simply beyond human heal-

ing 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 difficult

questions such as Why me? is first 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

specific 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 find 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 fled the Netherlands in the 19th

century because of concerns that the state church was

becoming too liberal. Dutch Calvinists in America remain aheadstrong and fractious lot, particularly when it comes to

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 denom-

ination will develop, but when a third Dutch Calvinist is

added to the mix, a schism over doctrinal issues and mattersof 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 Garri-

son 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 fingers: 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 lymphoblas-

tic leukemia with multiple adverse features. His response as

an avid golfer was predictableIt sounds like an un-

playable 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 first statement was an abrupt

Well, why not me? After all, everyone has to die of

something. My calculated silence was drowned inspeechlessness, and I wept.

875THE ART OF ONCOLOGY: WHEN THE TUMOR IS NOT THE TARGET

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