Promise Me

by Nancy G. Brinker

  Those two events were the fitting tribute Norman had earned, the fruit of his best and happiest years. I didn’t need to be part of his burial; I was part of his living legacy.

  Where We Aren’t, Where We Are, and Where We Want to Be

  I RECENTLY found myself on Meet the Press, seated next to a physician I’ve known and respected for a long time, rehashing those controversial “Don’t bother with those inconvenient mammograms” recommendations issued by the U.S. Preventive Services Task Force in fall 2009. This was the physician who called breast self-examination a “search-and-destroy mission,” so I suppose they were expecting a good mud wrestling match. I brushed off my note cards and armed myself with the same truths and ideals with which I gird my loins every five years or so when a similar study makes similar statements for similar reasons and similar broadcasts seat me next to similar physicians for similar discussions.

  Not my first time at the rodeo, nor my last, I’m sure.

  We were collegial and polite as we squared off. The moderator chuckled and finessed us, hoping the gloves would come off and good television would ensue. But I’m not a gloves-off sort of guest. In fact, I’m not a gloves-on sort of guest. I don’t wear gloves unless it’s with a nice winter coat or on the back of a horse at full gallop. I’m not looking to box anyone’s ears. I know what I know, and I won’t back down, but I always hope to forge some common ground where we can plant a support and start building a bridge that will serve women in some way.

  I started by pointing out that my life was saved by early detection, and my sister died without benefit of screening. Anecdotal evidence, but compelling nonetheless.

  “Cancer is personal. I get that,” the physician said. She went on to make the valid point that we have to screen 1,900 women for ten years to reliably prevent one death. A lot of effort, some would say, for a relatively small return.

  “But one out of 1,900,” I protested. “That’s a lot of women!”

  The physician seated next to me bumped past that thought like a busy yellow school bus.

  “This is about science,” she said.

  I get that. But do the math.

  In a town the size of Auburn, Maine, losing one woman out of 1,900 over ten years would be a little more than half a dozen women: the entire staff at Betty Lou’s Beauty Nook. In a city the size of Billings, Montana, that’s about two dozen women: all the altos and sopranos in a Full Gospel Church choir. In a metro area the size of Detroit, that’s about 1,500 women: all the mothers of all the fourth graders in a sizable school district. In New York State, it’s the Metropolitan Opera, filled to capacity from cheap seats to orchestra pit, including the fat lady singing.

  Approximately 17 million people visit Disney World’s Magic Kingdom each year. One out of 1,900 would be 8,947 people over ten years. If “Pirates of the Caribbean” killed 75 people every month, would anyone argue against implementing life-saving precautions?

  One woman counts. One woman adds up.

  The science of cancer is fascinating when applied to the enigma of cause and the intricacies of treatment. But the medical reality of breast cancer itself—the disease in its rawest form, advancing undetected until it can’t be denied, then advancing unimpeded until the death of its host—defies scientific thought. There’s no histology that can fixate sorrow. Human suffering can’t be mapped on a mammogram. Statistics that detail losses say nothing about loss.

  Breast cancer unnamed is a spiritual death by isolation; breast cancer untreated takes a physically hideous course. But that’s just rhetoric until the one woman with breast cancer is you or someone you love.

  Thank goodness, there are many physicians out there who get that.

  Sitting across the table from Dr. Eric Winer, I can’t believe my good fortune. He’s brilliant and pleasant to listen to, a man of good humor and great integrity, dedicated to his precise and compassionate science and to his wife and children. They say a good man is hard to find. A good oncologist is even harder.

  I first met Dr. Winer in 1995 at Duke; I was exploring Duke’s bone marrow transplant program, and he was an earnest young scientist. Eventually, he moved on to Dana Farber in Boston, and I ran into him there half a dozen times over the years. As SGK grew, surpassing the billion-dollar mark for project funding, we decided we needed to put someone in charge of our scientific position. This person would advise me and other spokespersons on the official scientific stand of SGK, assist us in the grant-making process, and act as an interpreter between the scientists we sought to fund and the patients we sought to serve.

  When we talked about assessing people, looking for what you need in a team member—or a team leader—Norman always said, “If you always agree, one of you is unnecessary.”

  SGK offered the position to Dr. Eric Winer, but he turned it down.

  “I don’t think you want a chief science officer,” he said, off to a good start on that disagreement thing. “You need a committee with a chair as adviser. And you want that person to be actively working in the field, rather than someone who’s left the field to work for you.”

  We followed his recommendation, formed the SGK Scientific Advisory Board and asked him to chair. This time he accepted the offer. (Off to a good start on disagreeing only half the time.) I knew we could count on him to render a thoughtful, science-based opinion, not the SGK party line. Of course, this makes me want to shake him every once in a while, but only in those moments when I’m so damn tired, I just wish someone would tell me what I want to hear and not befuddle my righteous wrath with facts. Fortunately, Dr. Winer understands the need to deliver hard information with tact and good humor, another job skill you look for in a good oncologist.

  “I view this organization as a large steamship,” he says. “When maneuvering a great ship, it’s important to move slowly and deliberately.”

  I don’t know where he finds all the hours he requires each day, but Dr. Winer still sees patients, and more important, his patients see him. He insists that “mission” is too lofty a term for what he does, but will reluctantly concede “calling.”

  “It’s the work I do. It’s a privilege to be able to do work that helps others and gives me a lot of gratification.”

  Dr. Winer came to his calling early, and it was hard earned.

  “I had a lot of exposure to medicine as a child. A kid with hemophilia—that meant I was chronically having bleeding into my joints. I missed a great deal of school and could not play sports or participate in most activities. When I was eleven years old, treatments became available that made me essentially normal for the first time. I witnessed a revolution in the way we care for people with hemophilia and experienced a dramatic change in my own life. That really brought me into it and made me want to forge a practice where I’d have the opportunity for those close relationships.”

  He considered pediatrics, but ultimately became fascinated with the chemistry of cancer—cellular, psychological, and emotional. Sitting across the table from him, I’m always energized by his blood-borne vitality and a weltanschauung I can only describe as healthy. Even with the complications he’s had to deal with, he looks at the complications that might have been, and he’s grateful.

  “What drew me to oncology was really the incredible need I thought existed on the part of patients and the fact that so much progress might be made,” says Dr. Winer. “Most important, there’s that intimate, intense experience with patients. When you become someone’s cancer doctor, you enter their lives in an extraordinary way. People who go into oncology want to take care of people—take care of families—at a time when that’s very difficult, getting involved in the nitty gritty. But of course, some degree of emotional detachment, or perhaps emotional neutrality, is critical,” he adds. “Objectivity is paramount. Once you lose that objectivity, you just can’t make the best decisions.”

  When the Preventive Services Task Force rolled out those controversial recommendations that seemed to fly in the face of everything we’d been telling wo
men about the importance of yearly mammograms, there were some complaints that Susan G. Komen for the Cure was slow to respond—and I’m proud to say, we were. Rather than leap into the fray, our Scientific Advisory Board took a few days to wade through the panel’s recommendations and all the small print of their supporting documentation. A lot of people, including me, were surprised to find that there was really nothing groundbreaking or even particularly fresh about the research from which the task force had extrapolated their opinion, and nothing all that new about the opinion itself. They’d just innovated a new and extraordinarily ham-fisted way of talking about it.

  I can’t speculate on their motivation, but the immediate effect was the heaving of an international sigh, women all over the world rolling their eyes as if to say, Make up your mind already. Our switchboard lit up. E-mail flooded in. Women weren’t confused; they were angry.

  Editorials editorialized and bloggers flogged away, all true to their agendas. Health care reform was the hot political topic at the moment, so those in favor of reform held up the recommendations and said, “You see? This is why we need reform!” and those opposed to it held up the recommendations and said, “You see? This is why reform is evil!”

  As is always the case, the truth was in the quiet middle ground, where people like Dr. Eric Winer reside, and that voice of reason is our only hope of breaking the gridlock of resentment between people who could—and should—be working together toward the same goal.

  “The thing they got most wrong,” Dr. Winer told me, “is the rollout. The rest is more complicated, but what we agree on is the technology gap. They’re saying mammography is inadequate, and they’re right. We’ve been looking at the same studies and coming to the same conclusion for years.”

  “So let’s talk about improving mammography,” I said.

  “Exactly.”

  “Meanwhile, how do we get some spin control on it? I’m not suggesting we ignore the science when it doesn’t fit our talking points, but we can’t be naïve about what insurance providers are going to do with this. Whatever a woman decides to do with this information, it ought to be her choice.”

  “Then say that,” said the good doctor.

  The following week, I stood before the National Press Club, told the women of America our recommendations hadn’t changed, and reminded the insurance companies that the all-seeing eye of Susan G. Komen was upon them.

  No matter where a woman is in this world, help is nearby—agonizingly close to her reach in many cases. What ends up separating her from her life and the people who love her is often a lack of knowledge, but more often, a lack of money. Awareness and access. It almost always comes down to these two issues, whether you’re talking about women in the United States who are stuck outside a broken health care system, women in developing nations who are deprived of education, or women everywhere who are marginalized by poverty and politics.

  At the 2009 UN Economic and Social Council Summit, Secretary General Ban Ki-moon appealed to the citizens of a world in crisis. Everything goes south in an economy like this; funding stumbles, the food chain breaks down. He touched on “cancer and other noncommunicable diseases” in the context of global health. Translation: It’ll be a long time before this subject bubbles up through the immediate issues of food, clean water, and rampant communicable diseases. That year’s focus, however, was global health, and that felt like a handhold. Now something innovative was needed, something that would capture the public consciousness.

  In October of 2009, we pinked the Pyramids.

  We planned a week of groundbreaking, silence-shattering events in partnership with the Suzanne Mubarak Women’s International Peace Movement, the Breast Cancer Foundation of Egypt, and other organizations as deeply committed as we are to the health and well-being of women. There was an unfortunate tempest in the teapot a few days before we arrived; two Israeli attendees were told—quite incorrectly—that they were no longer welcome to attend. That morphed into false reports that we’d slammed the door in the face of the Israelis. The blogosphere was abuzz with misinformation, calls for boycott, howling for my head on a platter, but those of us on the ground (and occasionally on camels) remained focused on our common purpose.

  “Who’s the purse?” my Man Friday, John Pearson, always asks when we arrive at whatever far-flung airfield we’re landing on. If no one else volunteers, he shoulders the large pink bag I schlep around wherever I go. I have no idea what all is in it, but I’m fairly certain I could perform an appendectomy if called upon. Someone else usually has to carry the purse because I still have trouble with my arm from that damned old lymphedema after my mastectomy. It’s a good metaphor for how I do what I do. Over the course of a lifetime, I’ve amassed my proud pink toolkit. It’s portable, versatile, and I depend on strong, smart people to help me wield it.

  The moment we heard about the misinformation circulating, we pulled everything we had out of the diplomatic bag, clarified facts, and made sure everyone understood that no one would be excluded from this event. Sadly, the Israelis opted not to attend, but they remain our allies as we move forward in the region. We supported their important clinical research and community programs prior to this misunderstanding, and we continue to support them now. I was scheduled to visit Israel the following week to discuss plans for a major international think tank and our first Israel SGK Race for the Cure. My travel plans didn’t change and at this writing, I’m very much looking forward to those events. Did I win the heart of the blogger who said I was Adolf Eichmann’s lap dancer? Probably not. Hopefully, he’s moved on to how the moon landing never happened. We can’t be distracted by misinformed chatter or by political differences that don’t involve us.

  The week-long series of events in Egypt brought together physicians, advocates, scientists, and survivors from all over the Middle East and northern Africa. The Great Pyramids at Giza were illuminated in pink light, and the following morning, walkers and runners gathered for the first Egyptian SGK Race for the Cure.

  We’d hoped for two thousand participants. Ten thousand people came.

  As I traveled to Israel and beyond in the following weeks, I felt the clock turn back. A familiar sense of opportunity shivered down my spine. And then the monkey chorus of old doubts reminded me that I’m not as young as I used to be. The necessary commitment, effort, and creative energy are daunting, and to be perfectly frank, my feet hurt.

  Well, I hear Suzy tease à la Laurel and Hardy, you really got us into it this time.

  Have I committed, I sometimes wonder, to a battle that can’t be won? Is it even possible to gain an inch of ground? But then I feel my mother’s steely gaze in the rearview mirror. I think of the women who’ve caught my hand and searched my eyes as I walked by.

  “Am I going to die?” so many of them ask.

  Or “Does this mean my daughter will get it?”

  “Is my disease contagious?” a woman in India recently asked me. Her face was ashen with fear. Crusted black tumors pushed through the skin beneath her bright magenta sari.

  In those moments, I know that doubt is an unaffordable luxury. Defeat is unthinkable. Inaction is not even an option. I hear the echo of great words: How long? Not long.

  When SGK board chair Alexine Clement Jackson and I discuss where we’d like this organization to be in twenty-five years, Alexine states unequivocally: “Out of business. Because the cure for breast cancer has been found and it’s a chronic, treatable disease for all women, everywhere in the world.”

  It’s a challenge. But in the words of JFK, “That challenge is one that we are willing to accept, one we are unwilling to postpone, and one which we intend to win.”

  On a wide world stage in a complicated environment, the well-being—in many cases the very survival—of 2.5 billion people is threatened by a horizontal system that needs to be vertical, a lack of access that needs to be an open door. There are places in the world that haven’t progressed much beyond that first rudimentary diagnosis and treatment
of breast cancer recorded by the ancient Egyptians, places where women’s bodies are shrouded in shame and silence. Angels of mercy die as a matter of inconvenience, and their passing doesn’t even leave a hash mark on statistical analysis. At this writing, the UN’s Millennium Development Goals do not include the word cancer. And beyond all that is the bald reality that at the end of the day, I’m tired and I miss Suzy, my touchstone, my best friend. At the end of the day, a stinging sense of not enough always lingers.

  In Shakespeare’s Much Ado About Nothing, a nobleman tells a returning soldier, “A victory is twice itself when the achiever brings home full numbers.” He asks how many were lost in battle, and the war-weary soldier says, “None of name.”

  My numbers can never be full because I wasn’t able to bring my sister home. But the mothers and sisters know that every one of the fallen had a name, and I’ve heard those names spoken as I marched beside the few who became the many. We see the long road ahead and feel the loving presence of those who fought the good fight. We remember their faces and carry their love with us into the future, not because of how they died but because of how they lived. In my heart, I speak to each of them the words I spoke at Suzy’s funeral:

  Sister, I thanked God today for taking you into his peaceful eternity. I thanked Him for giving you to us, even if for too short a time. And I thanked Him for relieving you of your suffering and pain. But for all of us who loved you so dearly, the pain will continue. Losing you is overwhelming. Many beautiful words vanish like snowflakes as they fall. But not your familiar beautiful words. The ones you wanted to say to us one more time: Thank you … I forgive you … and always, I love you. Those words will remain in our hearts forever. No accolades or rewards, Suzy, just us whom you loved so well in death as in life. Go with God, in peace, my dear sister, and know that with you goes a part of each of us.