I realize, now that I have cancer, that I have been reading about cancer for many years. Most of what I know about cancer I know from reading. That is, I suppose true of most topics; we learn about Brazil, or the French Revolution, or John Jay, by reading. I could go on and on about books and their central role in my life, but let me get to the topic at hand, four specific books.
The Emperor of all Maladies, by Siddartha Mukherjee, is a history of cancer, from the earliest descriptions of the disease down to almost the present. Mukherjee is himself a cancer doctor, an oncologist, and he describes some of his own patients, and their struggles, but most of the book is about the struggle to understand, to treat, to solve cancer. In one section, for example, he discusses the political and legislative history of the National Cancer Act of 1971, the idea that cancer could be killed in the way the moon had been reached.
Re-reading the book in the past few weeks, I was especially interested in the passages about genetics, genetic diagnosis, treatments based on genetics. One new drug is Herceptin, designed to address not all breast cancers, but breast cancers in which the Her-2 gene is overexpressed. Here is Mukherjee’s description of the first Herceptin trial, conducted by Dr. Dennis Slamon, and one patient in that trial, Barbara Bradfield.
“Fifteen women, including Bradfield, enrolled in Slamon’s trial at UCLA in 1992. (The number would later be expanded to thirty-seven.) The drug was given for nine weeks, in combination with cisplatin, a standard chemotherapy agent used to kill breast cancer cells, both delivered intravenously. As a matter of convenience, Slamon planned to treat all the women on the same day and in the same room. The effect was theatrical; this was a stage occupied by a beleaguered set of actors. Some women had begged and finagled their way into Slamon’s trial through friends and relatives; others, such as Bradfield, had been begged to join it. ‘All of us knew that we were living on borrowed time,’ Bradfield said, ‘and so we felt twice as alive and twice as fiercely.’ A Chinese woman in her fifties brought stash after stash of traditional herbs and salves that she swore had kept her alive thus far; she would take oncology’s newest drug, Herceptin, only if she could take its most ancient drugs with it. A frail, thin woman in her thirties, recently relapsed with breast cancer after a bone marrow transplant, glowered silently and intensely in a corner. Some treated their illness reverentially. Some were bewildered, some too embittered to care. A mother from Boston in her mid-fifties cracked raunchy jokes about her cancer. The daylong drill of infusions and blood tests was exhausting. In the late evening, after the tests, the women went their own ways. Bradfield went home and prayed. Another woman went home and soused herself with martinis.”
“The lump on Bradfield’s neck—the only tumor in the group that could be physically touched, measured, and watched—became the compass for the trial. On the morning of the first intravenous infusion of the Her-2 antibody, all the women came up to feel the lump, one by one, running their hands along Bradfield’s collarbone. It was a peculiarly intimate ritual that would be repeated every week. Two weeks after the first dose of the antibody, when the group filed past Bradfield, touching the node again, the change was incontrovertible. Bradfield’s tumor had softened and visibly shrank. ‘We began to believe that something was happening here,’ Bradfield recalled. “Suddenly, the weight of our good fortune hit us.’”
The trial was a success, not for every patient, but for most of the patients, including Bradfield, who was still alive and well in 2009, when Mukherjee interviewed her for his book. And Herceptin, the drug that was first tested not that long ago, is now a standard part of the treatment for breast cancer—not for every patient, but for those with the Her-2 mutation.
As the long passage quoted shows, Mukherjee is an incredibly gifted writer, telling the human story as well as the medical and scientific story, and telling these stories (with rare exceptions) in plain and often powerful English. A great book, one that deserves its awards and its continued high sales.
When Breath Becomes Air, by Paul Kalanithi, is a memoir by a Stanford doctor who died of lung cancer. Described in this way, the book sounds depressing, morbid. But the book is anything but depressing, because Paul Kalanithi was such a talented, lively, wonderful person and writer.
Here are the first few paragraphs of the book:
“I flipped through the CT scan images, the diagnosis obvious: the lungs were matted with innumerable tumors, the spine deformed, a full lobe of the liver obliterated. Cancer, widely disseminated. I was a neurosurgical resident entering my final year of training. Over the last six years, I’d examined scores of such scans, on the off chance that some procedure might benefit the patient. But this scan was different: it was my own.”
“I wasn’t in the radiology suite, wearing my scrubs and white coat. I was dressed in a patient’s gown, tethered to an IV pole, using the computer the nurse had left in my hospital room, with my wife, Lucy, an internist, at my side. I went through each sequence again: the lung window, the bone window, the liver window, scrolling from top to bottom, then left to right, then front to back, just as I had been trained to do, as if I might find something that would change the diagnosis.”
From there Kalanithi moves forward and back, describing his childhood in a remote part of Arizona, his college and medical school years, his fascination with the brain and brain surgery, his marriage, his diagnosis, his illness, his partial recovery and return to work. Perhaps the book was more meaningful for me because I KNOW many of the places he describes, such as Stanford Sierra Camp, where he spent a summer working, and I spent many summers as a child. “The camp delivered on its promise, concentrating all the idylls of youth: beauty manifest in lakes, mountains, people; richness in experience, conversation, friendships.”
The introduction to the book is by Abraham Verghese, another amazing Stanford author/physician. Verghese writes, far better than I can, about why you should read this book. “After reading the book you are about to read, I confess I felt inadequate: there was an honesty, a truth in the writing that took my breath away. Be ready. Be seated. See what courage sounds like. See how brave it is to reveal yourself in this way. But above all, see what it is to still live, to profoundly influence the lives of others after you are gone, by your words. In a world of asynchronous communication, where we are so often buried in our screens, our gaze rooted to the rectangular objects buzzing in our hands, our attention consumed by ephemera, stop and experience this dialogue with my young departed colleague, now ageless and extant in memory.”
Earlier this year, I was reading the Washington Post, and found a story about Paul Kalanithi’s widow, and how she had met and fallen in love with the widower of another author, Nina Riggs. This charming news story led me to Riggs’s wonderful book: The Bright Hour: A Memoir of Living and Dying.
Riggs was not a doctor; she was an author, and a wife and mother, and one day learned that she had “one small spot” of breast cancer. As she puts it in the first chapter, “it became a chant, a rallying cry. One small spot is fixable. One small spot is a year of your life. No one dies from one small spot.” She has brilliant descriptions of hospitals, such as this paragraph about “the chemo bay.”
“The treatment room has no doors. Maybe a pulled curtain, a hushed voice, but in the end it is an open sea of people waiting together to take in the poisonous stuff that we hope will make us better. Time moves differently here—so much waiting, so much taking place. All the double-checking and bracelet scanning. All the side effect management: Zofran, steroids, saline flushing. The please-repeat-your-name-and birth-date. Do you need a snack? More water?The keen eyes of the hazmat-suited nurses, the steady drip-dripping of the IV, laughter, the smell of French fries, ginger ale tabs fizz-popping open, texts pinging in from all directions.”
Part of what I love about Riggs is that she relies upon books. In particular, she relies upon Montaigne and Emerson; she was indeed a descendant of Emerson, giving her a particular perspective on the sage of Concord. She quotes a favorite passage from Montaigne about death, about the death of his brother at the age of twenty-three after being hit by a tennis ball.
“He did not sit down or rest, but five or six hours later he died of an apoplexy caused by the blow. With such frequent, common examples passing before our eyes, how can we possibly get rid of the thought of death; how can it not seem at every moment to be gripping us by the throat?”
Riggs sent me to Montaigne, but also to another book, not really a cancer book, a Montaigne book. How to Live: Or a Life of Montaigne in One Question and Twenty Attempts at an Answer, by Sarah Bakewell, is a wonderful little book, sort of a set of interrelated essays on Montaigne. Like Riggs, Bakewell quotes some of Montaigne’s famous comments on death, on how by thinking about death we learn to live a better life. But Bakewell argues that this was sort of the “early Montaigne,” that later in life Montaigne spent less time thinking about death, arguing that there really was nothing to learn about death, that peasants had been dying for centuries without philosophy, that the key was to live life well. I am not enough of a Montaigne expert to evaluate that, but I intend to find my college copy of Montaigne and do some reading before long. Ditto for Emerson, whom I have never really studied.
Back to Riggs. One chapter I have read and re-read deals with a conversation in the dark with her husband. He says that he cannot wait for “things to be back to normal.” She reacts with anger: “I can’t handle you saying that. Thinking that way kind of invalidates my whole life right now. I have to love these days in the same way I love any other. There might not be a normal from here on out.”
I hope and pray that I have some “normal days” ahead of me, days when I do not have to go for a blood test, do not have to talk with any doctors or physical therapists, do not have to even THINK about cancer. But there may not be. So I have to love these days like any other days.
I am not quite sure how and why I started reading The Fault in our Stars, by John Green. it is a novel, about two teenagers who meet in a cancer survivor group and fall in love. I will not spoil the ending by going further into the plot, but wanted to give some sense of the book by a few quotes.
The narrator, Hazel Grace Lancaster, tells her parents, without much success, that Sleep Fights Cancer, to persuade her parents to allow her to spend more time in bed. I have also used said this, without much success, to explain why I have been taking more naps than usual.
When I was four and five years old, my mother used to take a nap, and try to make my brother and me take a nap at the same time. We did not want to take naps, we wanted to play, and that of course made nap time a tense time. Perhaps because of that, I have never learned to nap properly, I cannot lie down for an hour and arise refreshed. I often lie down and cannot sleep, and if I do sleep, I awake an hour or two later feeling like I have been hammered over the head. But some days, these days, I am just tired, and I take or try to take a nap.
Hazel Grace loves a book, An Imperial Affliction, about a girl with cancer. She loves it so much that she reads and re-reads it and abbreviates it AIA. She is quick to explain that AIA is not a cancer book. “But it’s not a cancer book, because cancer books suck. Like, in cancer books, the cancer person starts a charity that raises money to fight cancer, right? And this commitment to charity reminds the cancer person of the essential goodness of humanity and makes him/her feel loved and encouraged because s/he will leave a cancer-curing legacy. But in AIA, Anna decides that being a person with cancer who starts a cancer charity is a bit narcissistic, so she starts a charity called The Anna Foundation for People with Cancer Who Want to Cure Cholera.”
So there, four reading recommendations, or five if you count Bakewell’s Montaigne book, not just for those with cancer, but for those with life. Because as all of the books point out, in different ways, cancer is part of life. “Cancer kids,” Green writes, “are essentially side effects of the relentless mutation that made the diversity of life on earth possible.” Or as Mukherjee puts it “Cancer’s life is a recapitulation of the body’s life, a pathological mirror of our own. Susan Sontag warned against overburdening an illness with metaphor. But this is not metaphor. Down to their innate molecular core, cancer cells are hyperactive, survival-endowed, scrappy, fecund, inventive copies of ourselves.”