Reading and Writing Cancer How Words Heal

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For those who survive
and
those who do not
 Contents

PREFACE

CHAPTER 1
Coming to Terms

CHAPTER 2
Impatient Memoirs

CHAPTER 3
Sublime Artistry

CHAPTER 4
My Blog

NOTES AND SUGGESTED READINGS

ACKNOWLEDGMENTS

CREDITS
READING
AND
WRITING
CANCER
 Preface

DO WRITING AND READING about cancer right some of its grievous

wrongs? In Reading and Writing Cancer, I answer this question with a
resounding yes and then ask: why and how? I believe that engagement with
cancer literature and art can alleviate the loneliness of the disease while
enhancing our comprehension of how to grapple with it. These convictions
arose from recent and not so recent personal experiences.
At the worst times, writing helps us remember. Only the paper napkins
handed to me by a nurse enabled me to recall the moment I regained
consciousness after the horrific debulking operation that ovarian cancer
patients initially undergo. On the paper napkins I recorded my reactions to
the rhythm of swabbing and swallowing: a morphine drip had chapped my
lips and dried my mouth, and I spent the night with an oddly triangular
plastic lollypop, a Styrofoam cup of ice chips . . . and the mounting pile of
napkins. After that botched surgery in 2008 and throughout frightful
reoperations and radiological procedures and cycles of chemotherapy, I
always carried a pen and pad to record even the less dramatic protocols to
which cancer patients are subjected. What would have been lost in a
miasma of distress could be retrieved—with the preliminary and scanty
jottings.
Although in my previous book, Memoir of a Debulked Woman, I
recounted medical treatments that seemed worse than the disease, using my
notes and writing the manuscript helped me immeasurably: not only to
recall the gruesome events I had endured, but also to serve as a patient-
advocate, protesting the so-called gold standard of treatment. More, the
process of composition turned out to be as uplifting and inspiring for me as
meditation is for others: a way of steadying myself, gaining perspective,
quieting anxieties, and shifting my attention from my ailing body to words,
to sentences, and (best of all) to the experiences of other people. For
between drafting and revising, I avidly devoured accounts composed by
men and women confronting different cancers. “In illness,” Virginia Woolf
believed, “words seem to possess a mystic quality.”
For the past two years, I have been kept alive by a clinical trial and by
the New York Times. The regular appearance of my blog, “Living with
Cancer,” has been as life-enhancing for me as the packets of an
experimental drug I receive at the Indiana University Simon Cancer Center.
Actually, because I have control over the drafting and revising of the
essays, they play an even more miraculous role than the pills in revitalizing
my existence. This venture has convinced me that writing is an effective
complementary therapy for cancer patients coping with the consequences of
a ghastly disease.
At the same time, doing research for the blogs has persuaded me that
reading the vibrant works of others eases the anxiety of cancer and clarifies
what we are going through individually. Now that I have been granted the
benefits of a less debilitating targeted drug in a clinical trial, I am able to
reflect on these processes. In my absorption with words, I resemble many
patient-writers, who have produced journals, poems, graphic memoirs, op-
ed columns, sociological books, and performance pieces to challenge and
change medical protocols; to help heal, fortify, or renew themselves; and to
forge an ongoing cancer canon.
Reading and Writing Cancer explores a unique phenomenon in
contemporary times: an explosion of responses to a particular group of
diseases not by medical specialists (who have been writing about cancer for
centuries) but by patients, caregivers, and artists. For the most part, their
work is personally expressive rather than scientific, historical, policy-
driven, or polemical. Diaries, essays, memoirs, short stories, and novels—as
well as photographs, paintings, movies, television series, and blogs—play a
major role today in shaping public understanding of various cancers. Taken
together, these productions establish an evolving tradition that has not yet
been recognized or charted. I begin by describing writing as a form of
therapy and then consider how patients and caregivers, as well as people I
am tempted to call civilians or bystanders, have made use of a range of
inventive forms that can stimulate and solace us during hard times.
Obviously, writing cannot cure patients, but it facilitates the progress of
repairing the damages done. Words have the power to mend spirits abiding
within damaged or incurable bodies. Yet some authors of cancer narratives,
in thinking about their productions, would undoubtedly object to the term
“therapy,” since it can feel frightening and painful, rather than restorative,
to examine the catastrophic repercussions of a cancer diagnosis and its
resultant treatments. Like many responding to trauma, such writers would
instead describe what they were doing as testifying or bearing witness.
Others, especially self-defined artists, might feel that the word “therapy”
erases the rigorous craft involved in framing evocative structures,
metaphors, scenes, and arguments to heighten the effect of their
productions.
However, therapy is commonly defined as rigorous as well as painful
work. Even when engaged in the labor of crafting, or of testifying and
bearing witness, cancer patients frequently find that writing about the
disease eventually performs a therapeutic function, especially if they have
experienced themselves as robbed of who they were before diagnosis or,
worse yet, evacuated of any sense of self during treatment.
Surgery, radiation, and chemotherapy can cause patients to feel so
invaded, so bombarded, so infused that they lose a sense of their own
agency, of subjectivity, even of language. The writing process enables a
reconstitution of the self—probably not the same self that existed before
diagnosis, but nevertheless another authentic self and a voice. Be it angry or
sorrowful, defiant or resigned, courageous or fearful, this emergent voice
helps us understand who we are becoming.
With its eccentric intonation, diction, and rhythm, what we call the
voice in the silence of writing can quite distinctively identify a unique
individual. (Its potential for singularity reminds me of friends who need
only say on the phone “Hi, do you have a minute?” and I know exactly who
is calling.) The writing process, in its creation of an exterior expression of
the self, resembles other therapeutic activities available to people whose
physical strength is impaired: painting, for example, or playing an
instrument. But of course most of us learn the basics of composition in our
early education, while fewer acquire the rudiments of the visual and
musical arts—which is why writing has attained such a prominent role in
patients’ reactions to cancer.
This book addresses people who want to write more effectively about
the impact of disease on their lives as well as people who want to read or
view works that—through their crafty artifice—instruct us on the physical,
mental, emotional, social, and economic repercussions of various cancers
and treatments. By reading sometimes disturbing writing or viewing
sometimes perplexing artwork about cancer, we can discover multiple ways
to live with the disease. The first and last chapters of this book discuss
writing, the middle two reading. Of course, brilliant representations of
breast cancer abound; however, I have made every effort to include as well
work that addresses cancer arising from a number of other organs and
pathways.
Although I do not reprint any of my New York Times essays in their
entirety, I amplify my responses to a number of the issues I encountered
while doing my research for them. Sometimes material in this book
migrated into the blog and sometimes passages in the blog migrated into
this book. In the last chapter, an autobiographical essay, I reflect on the
problems and pleasures of blogging and incorporate some drafted posts that
I never dared to submit. Before that conclusion, the chapters of this book
progress from the least to the most complex forms of composition, but all
were designed to stand alone and can be read out of order. Indeed, each is
composed from a different perspective, for I start out as a writing coach and
then I draw on my experience as a memoirist, a literary critic, and finally a
blogger.
In the first chapter, “Coming to Terms,” I discuss the benefits of so-
called free writing and diaries. Here I summarize medical research showing
that expressive composition improves the lives of cancer patients
psychologically and also physiologically. Since the rudiments of journal
writing have been established and taught for decades, I apply them to the
context of cancer by providing a series of writing prompts, describing a
number of well-established routines and exercises, and proposing models
for imitation.
The second chapter, “Impatient Memoirs,” asks: What do we gain from
reading accounts of profoundly private experiences that have been
transformed into public testimonials of the body under siege? Within the
conventional structure of the cancer memoir, patients and caregivers
criticize medical practices, imagine the nature of cancer, and confront the
injuries brought about by both. In innovative reinventions of the memoir
form, humorists and graphic artists, as well as ecological and spiritual
thinkers, have produced absorbing depictions of the fraught and yet fertile
psychic geography navigated by patients.
 The adjective in the title of chapter 3, “Sublime Artistry,” refers to
disturbing but fascinating art composed about (but not necessarily by)
people dealing with cancer. Creative artists who attend to the suffering
caused by cancer produce awe-inspiring photographs, stories, paintings,
plays, and novels, especially when they postulate the unexpected possibility
of deathbed sublimity. Artistic representations of cancer—unsettling for
readers or viewers—repel us with their visceral portrayal of an implacable
threat to our existence, and yet they also attract us with a sense that by
contemplating such a threat we at least partly confront and possibly
comprehend or accept it.
Moving from the sublime to the quotidian in chapter 4, Reading and
Writing Cancer concludes with a personal essay about my blog. Cancer
patients have gained enormously from the Web’s up-to-the-minute reports
and from its potential to put people into communication networks, but does
the medium of the blog pose unique challenges? Here I address the issue of
audience by touching on the complicated ethics of self-revelation. How is it
possible to write truthfully about intimate experiences without embarrassing
ourselves or marginalizing others? For people like me who do decide to risk
at least some self-exposure, I suggest a number of formats to generate and
enrich the composition of short essays.
Taken together, the chapters of this book demonstrate that we are
observing and participating in a fundamental change in the world of letters.
In the 1920s, Virginia Woolf decried the paucity of literature about sickness:
“illness has not taken its place with love and battle and jealousy among the
prime themes of literature.” According to Woolf, authors up to her day
preferred to concern themselves with the mind, whereas in illness the body
predominates. However, the contemporary works I have found suggest that
disease is starting to take its place among the prime themes of literature.
The most intriguing of them put into play two fundamentally antagonistic
categories: writing, which seeks to enlighten or entertain, and cancer, which
is just about the least enlightening or entertaining topic that most people can
conceive of. In the process of meditating on the relationship of writing to
cancer, the authors of these texts tell us about the power as well as the
impotence of literature, even as they stir us with their discernment.
Throughout I have sought to create a mix between a manual and a map:
a manual for those who want to write, a map for those who want to read and
view. Actually, I wanted to produce a sketchy manual and map, rather than
an elaborately detailed or definitive one. Whenever I imagined this volume,
it was slim because cancer patients and their caregivers have to meet so
many ­obligations—urgent physical crises, regular medical appointments,
family quandaries, money problems—that they do not have time to slog
through an expansive disquisition. Nor did I know how long I would be
physically well enough to concentrate on the composition.
I am also aware that we reside in the midst of the development of the
cancer canon. Although occasionally I look back on early historical periods,
most of the works discussed in this book were created after the 1970s, when
cancer ceased to be a monolithic term and began to be treated as a group of
differentiated and quite distinct diseases. During the turn into the twenty-
first century, the paternalism of the medical establishment diminished as
more women entered the profession. Patient empowerment movements
sprang up as medical information became democratized, and doctors began
to disclose prognoses and treatment consequences more truthfully. All of
these changes—affecting the cancer canon and effected by it—occurred
while the demarcation between public discourse and private lives continued
to erode. In our time, we can only surmise what contours this tradition will
take.
Reading and Writing Cancer is therefore not an encyclopedic overview
of everything that has been thought and said about cancer writing. Indeed,
some genres—children’s literature, poetry—receive little attention. For the
most part, I deal with texts decidedly focused on cancer, although the
disease has impelled writers to produce all sorts of works on every
conceivable subject. Many of the jaunty self-help books and articles that are
commercially successful—works imbued with the power of positive
thinking or enforcing what one critic calls “the tyranny of cheerfulness”—I
have left for the sociologists who study ongoing evidence of Americans’
optimistic faith in the power of their individualism.
Even for those forms that I found particularly important, I have often
chosen a representative text to stand for a host of others, rather than
surveying everything that has been published. For visual works, I point
readers toward Web locations so that they can see the paintings,
photographs, and cartoons on the screen. I’m quite certain I have missed
important works and will kick myself at having left them out, but none of us
are specialists yet on this subject and I will learn from all the omissions that
readers discover.
 Since each chapter addresses a subject that could be a book on its own, I
have had to condense quite a bit. At the back of the volume, notes to
chapters supply the page citations for passages I have quoted and include
further suggested readings and occasionally scholarly background material.
These endnotes are keyed to pages rather than note numbers to reduce the
risk of distracting the reader. To provide a diversion from tendentious
advice books, I have attempted to present not an argument about the proper
way to deal with cancer but rather a guide to a broad spectrum of responses
displaying how people from various perspectives and with diverse values
and experiences have reacted to a succession of treatments or the disease’s
progress.
The roads surveyed on this map often take hazardous turns. But by
setting out together, we can learn to negotiate the terrain, glimpse less
painful and more productive routes, relish companionship along the way,
and help teach the experts—physicians and nurses, social workers and
health care advocates—what patients need on our various journeys. In these
pages, cancer patients can get to know fellow travelers who have abundant
insights to share.
I have been teaching and writing about writing for some fifty years and
will draw on that background throughout the coming pages. But this project
has entranced me like no other—perhaps because it comes from the core of
my being, the center of my heart. Whereas cancer has been the bane of my
life, writing has been its boon. Although cancer remains a depressing
subject, writing aims at enlightenment and, when possible, delight. As did
many of the writers discussed in the pages to come, I have decided that if
we have to have cancer, we can put it to use. I rejoice in the prospect that
readers will put this book to good use.
When my essays started to appear in the online New York Times, I
thought it was ironic that they were coming out in a section called “Well.”
Increasingly, though, I have realized that even while dealing with an
incurable condition, I can find springs and founts of pleasure. Composing
this book has furnished quite a few of those. I hope it and the practices of
writing and reading and looking that it describes will become a source of
healing: a deep and somewhat scary but nonetheless refreshing well in the
world.
 Chapter 1

Coming to Terms

IT IS A TRUTH generally acknowledged that a person dispossessed of

health must be in want of paper and pen or a computer—and lots of books.
All sorts of fictional and nonfictional works deliver solace and pleasure to
the ailing, but books about cancer inspire writing about cancer, which in
turn enables patients to understand what we are experiencing. “How can I
tell what I think till I see what I say?” the novelist E. M. Forster once asked.
How can I tell what I think about disease until I see what I write?
The art of great writing cannot be taught, but the craft of expressive
writing can certainly be learned. Over the past few decades, a number of
well-established activities and exercises—developed by composition
teachers—have been used to transform beginners into devoted and supple
authors of difficult passages in their life stories. They can easily be adapted
to and adopted by people dealing with cancer. The loneliness, boredom,
exasperation, anxiety, and enervation of treatments can be greatly alleviated
by the act of writing and by reading that prompts more writing.
Should you be in the large population of people grappling with some
sort of cancer, perhaps you were lucky and your disease was caught at an
early stage, but perhaps not. Whether you have lost a breast or a testicle, a
chunk of lung or liver, or simply but shockingly your assurance in your
future well-being, you have had to deal with the abrupt threat of your
impending mortality. For many of us, distress at confronting the
vulnerability and transience of existence may have been exacerbated by the
physical and psychological injuries associated with surgery, radiation, and
chemotherapy. In quite a few patients, cancer and its treatments spawn
depression over grievous losses. This chapter—composed for people with
any type or stage of cancer and for those who seek to support them—
proposes and explores writing as an alternative therapy that can benefit all
of us enduring the bruising jolt of a cancer diagnosis and the damages that
treatment may bring in its wake.
After a diagnosis of late-stage ovarian cancer in 2008, I underwent three
abdominal surgeries, three cycles of chemotherapies, and umpteen
radiological procedures, conventional medical regimens that made me
miserable. Yet I remained and remain allergic to most alternative
approaches to disease . . . on quirky, not rational, grounds.
I am afraid of needles—too many have been stuck into me in hospitals
—so I have never tried acupuncture. I am fearful of strangers touching me
—another problem in hospitals—so I never signed up for massage or
healing hands. I fidget and worry and wander when trying to sit still and
meditate. Visualization unfortunately brings apocalyptic images to mind. I
distrust potions and lotions unregulated by the FDA, and therefore mistletoe
injections and cappuccino enemas do not appear on my to-do lists. When
not nauseated or weakened by treatment, I revel in an appetite for any sort
of food (and the strength to cook it), so I refrain from macrobiotic or vegan
or other restrictive diets. Given this obstinate stance, how can I propose
writing as an alternative therapy?
From 2008 until I enlisted in a Phase I clinical trial in 2012, I was too
weak to engage in physical exercise, but I could sit lengthwise on the blue
couch in my living room with my legs outstretched and a laptop perched on
them. My body was resting, as it needed to do, but my fingers did the
walking: taking me to many websites where other patients asked and
answered questions about cancer, engaging me in lively email conversations
with family and friends, and affording me the opportunity to record my
feelings and thoughts about the diminishment of my life.
During perilous times—after a surgery or in the foggy fatigue following
chemotherapy—I might only list my medications or the dates of upcoming
appointments. After the staples were removed or when the fog momentarily
lifted, though, I could describe the arctic, antic zones of the hospital. Often,
then, mundane descriptions would pique my attention, somehow snagging
my interest, and I would start to elaborate on the zany hats and New Age
music in the freezing operating room or the periodic chimes announcing