by Azra Raza
Copyright
Copyright © 2019 by Azra Raza
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First Edition: October 2019
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The Library of Congress has cataloged the hardcover edition as follows:
Names: Raza, Azra, author.
Title: The first cell : and the human costs of pursuing cancer to the last / Azra Raza.
Description: New York : Basic Books, 2019 | Includes bibliographical references and index.
Identifiers: LCCN 2019016257 (print) | LCCN 2019018259 (ebook) | ISBN 9781541699502 (ebook) | ISBN 9781541699526 (hardcover)
Subjects: | MESH: Neoplasms—therapy | Medical Oncology | Neoplasms—prevention & control | Personal Narrative
Classification: LCC RC263 (ebook) | LCC RC263 (print) | NLM QZ 21 | DDC 616.99/4—dc23
LC record available at https://lccn.loc.gov/2019016257
ISBNs: 978-1-5416-9952-6 (hardcover); 978-1-5416-9950-2 (ebook)
E3-20190830-JV-NF-ORI
Contents
Cover
Title Page
Copyright
Dedication
Epigraph
PROLOGUE
CANCER AND ITS DISCONTENTS
INTRODUCTION
FROM LAST TO FIRST
ONE
OMAR: The Nobleness of Life Is to Do Thus
TWO
PER: Sandpiles and Cancer
THREE
LADY N.: A Loaded Gun
FOUR
KITTY C.: What Wound Did Ever Heal but by Degrees?
FIVE
JC: One Touch of Nature Makes the Whole World Kin
SIX
ANDREW: Was Honesty a Choice?
SEVEN
HARVEY: Death Stared Him in the Face, and He Stared Right Back
AFTERMATH
GIVE SORROW WORDS
EPILOGUE
THE DAWN HAS ALREADY ARRIVED
Acknowledgments
Discover More
About the Author
Bibliography
Credits
Praise for The First Cell
To Sheherzad
Khurshid-e-Jahan Taab Ki Zau Tere Sharar Mein
Abad Hai Ek Taza Jahan Tere Hunar Mein
—Allama Iqbal
The spark in you is a radiant sun
A new world lives in your talent
And to my siblings
Amera, Atiya, Tasnim, Javed, Sughra, and Abbas
In honor of what the G7 share: the deep love of each other and of Syed Ali Raza and Begum Zaheer Fatima, and memories of the best of times at Gulistan e Raza—the secure, warm, and fun home in our beloved Karachi
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Kaavish ka dil karay hay taqaaza kay hay hunoz Nakhun pe qarz uss girah e neem baaz ka
—GHALIB
The heart demands greater exertion into inquiry, for yet Our fingernails owe a debt to the half-undone knots
The work of the eyes is done. Go now and do the heart-work on the images imprisoned within you.
—RAINER MARIA RILKE
PROLOGUE
CANCER AND ITS DISCONTENTS
IN THE EARLY SPRING OF 1998, MY HUSBAND, HARVEY PREISLER, was diagnosed with cancer. The following year, we planned to take our five-year-old daughter, Sheherzad, and my brother Javed’s two children visiting from Pakistan, Musa and Batool, eight and twelve, to San Francisco for a highly anticipated vacation. We had already postponed the trip twice before, but it could be delayed no longer. The children were eager, and given Harvey’s disfiguring facial edema and the enlarging nodes, some form of aggressive treatment—sure to require us to stay put in the city for months—was now imminent. Before any of that happened, he felt strongly that the family needed to get out of the sweltering heat of Chicago for a vacation, even if for just a week.
Our flight to San Francisco was on a bright, clear summer morning. Having arrived at the gate a good ninety minutes before our departure, we split up; Harvey sat down in the boarding area while I chased the children around O’Hare. We got something to eat at the food court and then returned to the gate.
I was shocked by what I saw. Harvey sat, looking dazed, as streams of sweat poured from his body, making little puddles under his elbows on the armrests of the chair and under his knees on the floor. He was beet red. Tributaries of glistening perspiration filled the lines in his handsome face, making it appear startlingly young. He looked at me with hushed anxiety. I sent Batool running for the nearest café to get me a handful of napkins. I dabbed Harvey’s face and arms, wiping the chair and floor. There was no respite. The sweat came in torrential waves. His T-shirt and shorts were entirely soaked and dripping. The children stood around trying not to look, their faces ashen. It was a good fifteen minutes before the deluge subsided. I walked to the gift shop and purchased a fresh pair of pants and shirt. Without saying a word, little eight-year-old Musa stepped forward, quietly took the package from me, and gently escorted a bewildered Harvey to the restroom.
Being oncologists, both Harvey and I understood precisely what the sweating meant. Known as a B-symptom, it is a well-recognized manifestation of many cancers, especially lymphomas, and it is not a good sign. B-symptoms are associated with a more advanced, more aggressive disease with a poorer prognosis. I suggested we cancel the trip and return home, but Harvey, not willing to disappoint the children yet again, insisted on going ahead.
The first twenty-four hours in San Francisco were filled with apprehension as we drove the children around the Crooked Street and the harbor, not knowing what to expect, fearing the worst. Nothing much happened. Harvey began to relax. Then, in the middle of the third night, I woke up with a start. Water dripped steadily on my face. Harvey’s arm was arched over my head and running like a faucet. This time, we not only had to change his clothing, we had to call housekeeping to replace the soaking-wet sheets.
By the time we returned to O’Hare a week later, Harvey had developed another bizarre syndrome associated with many cancers. His left wrist suddenly blew up to twice its normal size. Despite the extra-strength Tylenol I had given him, he was writhing in agony as we climbed into the car to go home. It took twenty-four hours of cold packs and heavy-duty analgesics to control the excruciating pain. The next few days were some of the most tormented. He experienced regular episodes of drenching sweats, once or sometimes twice during the night, requiring f
resh bedsheets and clothing changes.
As swelling subsided in one joint, it popped up elsewhere without warning. Fresh lesions began with a tingling, burning sensation, becoming bright red and sizzling hot within hours. Nomadic lymphoma cells meandered autonomously, rudderless. Edema regressed from the face only to reappear in his joints. Lymph nodes in the neck and armpits swelled one day and receded the next, followed by a sudden enlargement of the spleen. Itinerant cells segregated, dispersed, re-collected, vanished, regrouped. They wandered the body with a studied carelessness, entering and leaving organs at will, disgruntled, edgy, exploring possible niches in various organs, rejecting some, settling in others. Horrified, helpless, we watched the drama unfold, Harvey from inside, I from the outside. The lymphoma marched on its aimless, monomaniacal journey into irresolution with a motiveless malignity.
Cancer is what I had been treating for two decades, yet until I shared a bed with a cancer patient, I had no idea how unbearably painful a disease it could be.
It was the summer of our discontent.
Cancer and its discontents.
INTRODUCTION
FROM LAST TO FIRST
I COULD NOT HAVE WRITTEN THIS BOOK WHEN I WAS THIRTY YEARS old. It is not because of any great discoveries I have made or research papers I have published since. It is because of the experience the intervening decades have given me as I cared for thousands of cancer patients and accompanied many to their deaths. Because the disease I treat is generally fatal, solace seems contrived, personal academic success egregious. My surroundings may not have changed much, but my perceptions have. I have learned to reexamine things I took for granted, to seek comfort in odd places. I have learned new things about what I thought I already knew: like the difference between illness and disease; between what it means to cure and to heal; between what it means to feel no pain and to feel well; about the harrowing nature of keeping appointments one never made. In clinic, in scientific meetings, I have felt like a fraud, a posturing intellectual phony. The complexity of another’s illness has made my own life appear simpler; in the march to death, I have begun to catalog the tragedies of survival. From time to time, I even feel buoyed without reprieve.
I treat and study a bone marrow preleukemic condition known as myelodysplastic syndromes (MDS) as well as acute myeloid leukemia (AML), which develops in a third of MDS patients. The treatment landscape for AML has not evolved much in fifty years, nor has it for most of the common types of cancers. With minor variations, a protocol of surgery, chemotherapy, and radiation—the slash-poison-burn approach to treating cancer—remains unchanged. It is an embarrassment. Equally embarrassing is the arrogant denial of that embarrassment. Technologic advances and the cure of cancer in animal models are loudly proclaimed as if those successes have had anything to do with treating the disease in humans. Improvement in survival of cancer patients measured in weeks is regularly referred to as a “game changer.” To make rosy pronouncements is profoundly unfair to patients. No one is winning the war on cancer. It is mostly hype, the same rhetoric from the same self-important voices for the past half a century.
Cancer treatment was primitive just a century ago. Historians will say the same about our practices fifty years from now. We boast of magnificent godlike technologic advances, editing the genome efficiently, turning genes on and off at will—yet cancer treatment, for the most part, remains Paleolithic in comparison. The issue is not so much that there has been little progress in cancer research. The question is why there is so little improvement in treatment. Why can’t we make use of the millions of research papers published in the past fifty years claiming huge successes in understanding the biology of cancer? For four decades, I have been hearing the same glowing predictions about the magic treatment just around the corner, resulting from a better understanding of oncogenes, tumor suppressor genes, the human genome and transcriptome, the immune system, or choking off blood supply to tumors. Most have fallen flat when brought to the bedside. The gaping disconnect between knowledge about cancer biology and the capacity to use this knowledge to benefit patients is staggering.
How we speak of cancer is primitive, too. In these past decades, I have attended thousands of academic lectures and listened to countless public talks on YouTube by cancer researchers. The latter almost all begin with descriptions of how the speaker’s passion for research started in youth, recount the history of their subsequent hard work and occasional setbacks, followed by their eventual personal success, the reason they own the podium. By the end of the talk, every oncologist relates at least one patient success story, providing an optimistic, bright summary of definite progress, small and incremental but progress nonetheless, and ends with the promise of even greater imminent success. Stay positive is the refrain, as if it were a sin to voice the intense pain and suffering of cancer patients. Why are we so afraid to tell the stories of the majority who die? Why keep promoting the positive anecdote? Why all this mollycoddling? Treating the public like fragile, vulnerable, oversensitive, easily hurt, anxious adolescents needing protection from stressful details is unfair, shortsighted, and in the long run, counterproductive for everyone involved.
A society and culture obsessed with winning views the death of cancer patients as a failure and therefore a subject best avoided. Dying is not a failure. Denying death is. The Western mind—portrayed, at least, by the classical literary canon—has not always been in denial. The depiction of suffering in Greek tragedy was meant to produce a paradoxical catharsis in its audience. Seeing their worst nightmares enacted openly onstage, debating the consequence of actions, and identifying with the characters in the play could dispel the fear of pain and death. Real-life situations presented in highly exaggerated forms underscore the deep-seated sources for inner anxieties and insecurities. Cancer stories, unlike Greek tragedies, need no exaggeration to depict the drama of pain and grueling decisions. Insights come from reading both types of stories for those who imagine changing places with others, empathizing with their deadly challenges.
The stories invoke in us a profound sense of wonder, a cleansing of the cobwebs obscuring the complexity of life, unraveling unexpected interludes of beauty, witnessing small acts of heroism in seemingly impossible situations, inspiring a deeper appreciation of all things good: There is no love of life without despair of life, Albert Camus once wrote. Clarity comes from role-playing. By learning from the experience of others, we can interpret our own lives better, choose a different death, record our wishes in advance. In his essay “Letter from a Region in My Mind,” James Baldwin clarifies our shared destiny with startling eloquence:
Life is tragic simply because the earth turns and the sun inexorably rises and sets, and one day, for each of us, the sun will go down for the last time. Perhaps the whole root of our trouble, the human trouble, is that we will sacrifice all the beauty of our lives, will imprison ourselves in totems, taboos, crosses, blood sacrifices, steeples, mosques, races, armies, flags, nations in order to deny the fact of death, which is the only fact we have. It seems to me that one ought to rejoice in the fact of death—ought to decide, indeed, to earn one’s death by confronting with passion the conundrum of life. One is responsible to life: It is the small beacon in that terrifying darkness from which we come and to which we shall return. One must negotiate this passage as nobly as possible, for the sake of those who are coming after us.
As it is, too few of us have any idea of how to prepare for it or what to do when it strikes.
I see thirty to forty patients every week, yet it felt surreal telling the handsome, tanned, forty-three-year-old Henry W., father of three young children, who was used to playing tennis regularly, whose wife, Rose, was an artist, that the reason he developed spontaneous bruising while on vacation in Bermuda is because he has AML. A bone marrow test showed that the leukemia had arisen in the background of profound dysplasia. The presence of multiply damaged chromosomes and a mutation in the p53 gene, also known as TP53, marked his case as a particularly virulent o
ne, impossible to control. His only chance of survival was to attempt remission of the leukemia with intensive rounds of chemotherapy first, and if successful, followed immediately by a bone marrow transplant. The couple’s innocent, beguiling reactions followed the expected cycles: swinging between disbelief and horror to finding strength in distractions like researching the disease, looking for second opinions, exploring the latest medical options available, checking his siblings’ blood types in anticipation of the transplant.
Sitting across from me in the exam room, after a particularly gruesome conversation about the gravity of Henry’s condition on their second visit, Rose said before leaving that she and her husband could not decide how or what to tell their three children, ranging from ages five to ten, who had sensed something was wrong and dreaded the worst. Children instinctively register parental anxiety, and they grade tension; like birds, they hear the infrasounds of approaching disaster. Following dinner the night before, when the children had settled in the family room with ice cream, Rose found an opportunity to start a conversation. She began by saying that because Dad had to receive frequent treatments for a blood disease, they would be spending a lot of time in the hospital. Grandma W. would be with them most evenings. She said it would also be a good idea for Dad to avoid infection and eat healthy things. The two boys sat staring, frozen with fear, the elder one looking like he was about to pass out. They did not want to hear any details. Rose could not continue. Henry choked up. Their five-year-old daughter broke the awkward silence. She walked to the trash can and dropped her ice cream cone, calmly saying, “I will not eat dessert until Dad can.”
Before Henry could start the intensive chemotherapy requiring four to six weeks of hospitalization, he was admitted to the hospital with a high temperature, resulting in violent, shaking chills and intense sweating. A million-dollar workup failed to reveal any specific cause. He started three antibiotics intravenously, along with antifungals and antiviral therapies. The fever of unknown origin raged on, unabated. He was seen by the transplant team, and several potential matches were identified. First, we had to reduce the number of leukemia cells in Henry’s bone marrow from 80 percent to less than 5 percent or the transplant would not be of any benefit. As the leukemia surged, chemotherapy was reluctantly initiated despite the spiking temperatures. His marrow emptied out of all blood-forming cells, resulting in dangerously low blood counts. He spent the next three weeks in a virtual fog, weakened by the double whammy of high-dose chemotherapy and potentially lethal sepsis. Then, things slowly improved. After six interminable weeks of hospitalization, he went home, only to return three weeks later with shaking chills and fever. The leukemia had come roaring back. From diagnosis to death, it took less than six months. Henry had received the same combination of two chemotherapy drugs I have been using since 1977.