Promise Me (41 page)

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Authors: Nancy G. Brinker

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“That’s going to create trouble for you,” Daddy worried, and I knew he was right.

I didn’t want to do it. Not so soon. I would have liked a little time to make friends and create a rapport with the government leaders. The room was full of seriously manly men who weren’t going to appreciate being scolded by a Jewish American woman about anti-Semitism. But I did what was asked of me. The Hungarians didn’t love me for it, but I think they were pleasantly surprised at my grit, and I followed it up with every gesture of goodwill I could think of in an effort to make friends. I talked with my father every day, and he coached me with calm, solid advice.

The spectacular exhibit of women’s art was stranded somewhere in wounded New York City. Curators were reluctant to ship it with the heightened terror alerts and security concerns. It would be a while. No one could tell me how long.

“This could actually be an excellent opportunity for me to do something for the artists here,” I told Mom and Daddy. “The embassy could host an exhibition of Hungarian artists who haven’t gotten enough face time in the world market. There’s wonderful art here, Mommy. Suzy would have loved all that living color. All the great movements are represented—everything from Impressionists to modern poster art—and none of it has gotten the attention it deserves.”

I went to my friend István Rozsics, a historian and art consultant who’d been instructing me on Hungarian culture in preparation for this post, and asked him if some contemporary Hungarian artists might want to display their paintings. The answer was an enthusiastic yes, and soon the place was filled with works by Lázló Fehér, István Nádler, Károly Klimó, Imre Bak, Tamás Soós, and Attila Szűcs. Once I’d spent a little time living with these paintings, I knew I’d never want to live without them again.

The people, seen and unseen, in these paintings spoke to me like soul mates and kindred spirits. They were vibrant and engaged. Energy born of anger, determination born of loss. But there was a playfulness there as well, a sporting sense of joy and, sometimes, a dignified but darkly knowing sensuality.

Ich bin ein
jelly doughnut.

I couldn’t speak the language, but I knew I belonged there.

The American Embassy residence had fallen somewhat into disrepair. If you’re a guest in someone’s house, you’re not going to insult them by painting the place while you’re in town, but this isn’t a Hungarian guesthouse; it’s a little piece of the United States within their country. Letting it get shabby is like parking a wreck of a car in someone else’s driveway. It should be a symbol of who we are. I raised a bit of money and used some of my own to renovate the bathrooms and update the ancient electrical features and employed local craftspeople to restore the elegance and shine to the wood and glasswork.

Slowly but surely, I did forge friendships in the Hungarian government, and I was able to nudge the topic of women’s health care into conversation, advance my ideas across the table, and win a few powerful allies, including the Hungarian president’s wife. Eventually, I gained the trust and cooperation of many heads of state and of the good people of Hungary.

Our goal for the Bridge of Health Alliance Against Breast Cancer was to connect the million or so Hungarian women most at risk with the information and facilities that would offer them significantly improved odds for survival. The only thing standing in our way was a system in need of transparency and repair. For generation upon generation, breast cancer had been unspeakable, untouchable. Hungarian women suffered and died quietly, just as American women once had—before Betty Ford and Rose Kushner started shaking things up. I sensed that this country was ready to make that leap in language, and now I’d seen firsthand that if we could shake those words loose, change would be unstoppable.

I proposed an educational symposium followed by a Sunday evening walk across the Chain Bridge, from Adam Clark Square on the Buda side to the Hungarian Academy of Sciences, a spectacular Neo-Renaissance building in Pest. Nearby Roosevelt Square would serve as the perfect place for a celebration of life and offer a rabble-rouser’s-eye view of Parliament.

“Wouldn’t it be dazzling,” I suggested, “if the bridge were illuminated in pink?”

It was a plan that purred on paper, but which in practical reality would roar.

The formidable pillars of the Chain Bridge had towered virtually unchanged for more than 150 years as the clatter of horse-drawn carriages evolved to streaming urban traffic. Even when Hitler’s retreating forces swarmed and destroyed every bridge in Budapest, the pillars stood, and the majestic lions maintained their silent resolve. The bridge itself embodies survivorship and was built as a symbol of national awakening. All this made it the perfect place to begin our journey. The visual transformation would pack a tremendous wallop, generating a buzz of curiosity—and yes, a little controversy—without leaving so much as a chalk mark on a single stone. Every eye in the city would widen just a little. Media across the country would ask the obvious questions, and we would be ready to answer with solid facts and accessible resources. Bathed in pink light, the path would be plain, and we would take the first steps together, beginning in the garden square in Buda, at the stylized Zero Kilometer Stone.

The actual lighting of the bridge turned out to be as complicated and expensive as all other aspects of the event combined. I’d gotten the technology and cost covered by a company owned by General Electric, but Hungarians have great reverence for their monuments. The powers that be weren’t eager to endorse the disruption of history or rush hour traffic. “That’s never been done” is the reason I’m most often given for why one can’t do a thing I’m already convinced I can and most assuredly will do. The second most frequent speed bump is “People won’t like it,” and I’m equally happy to circumnavigate that one, but gently. With diplomacy.

My respect for the magnificent city of Budapest and for this historic landmark was genuine, and I made a point of expressing my appreciation to everyone from the mayor to the maintenance workers. There was an endless exchange of forms, phone calls, meetings, and e-mail. Coffee and protocol. Lots of sit-down, face-to-face time with the event committee, the health committee, the diplomatic committee. For months, I lay awake, agonizing over the permits, permissions, and logistics. Having secured the necessary paperwork, I assembled an energized team of people to accomplish the task. Then I lay awake agonizing over whether anyone would come.

The day of the event, the first subtle rumblings of thunder nudged through the clouds just before sunset. A light drizzle settled over the
stone lions as they lounged, circumspect, atop the grand abutments that bookend the bridge. Shielding my forehead with a gloved hand, I scanned the threatening sky above the rolling river.

There would be rain; there often is.

It’s uncanny how many times I’ve seen this happen in the years—the decades—that have flown by. It starts with hazy precipitation. We’re all nervously glancing back and forth from our wristwatches to the gathering weather. The teasing drizzle sets us on edge; it keeps us acutely mindful of the importance of our cause and the fragile, no-guarantees nature of life, but from that first foot over the starting line in Dallas to the moment our millionth runner crossed the finish line in Rome almost twenty years later, it seems like the actual downpour always waits until we’ve done what we came to do. Then the torrent comes down with unbroken spirit, drenching the scattering crowd, dripping off the drooping balloons, melting the crepe paper decorations.

Those are the moments I feel closest to Suzy. It’s as if she’s holding an umbrella over our heads. The rain always holds off until after the event.

Well, almost always.

It’ll hold off
, I assured the taciturn lions. They glowered down at me, wet and skeptical, and I thought about the gloomy skies over Willow Bend. But the people came that day, and kept coming for twenty years.

By sunset, we were eight hundred strong. Despite the chilly wind and persistent drizzle, we gathered in the square, linked arms, lit candles. And Suzy held back the rain until we reached the other side, marching arm in arm. In remembrance of our sisters. In honor of our mothers. In defense of our daughters. Passing beneath the gaze of the guardian lions, we reached the opposite shore and sent up a great roar. My throat ached with the nearness of my sister, the beauty of the evening, the commitment of all those assembled here. For that moment, we all understood each other. Without this moment, nothing explored or explained inside the Academy of Sciences would have made a bit of difference.

Think globally; act locally
, the saying goes. So we began, I and my small circle of friends in Dallas. Never underestimate the power of so-called Ladies Who Lunch. Twenty years and more than $1 billion later, I stood beside the stone lions on the other side of the world, and that old saying had rotated on its axis. We were poised to
think locally; act globally
, but
the message and mission remained the same. My heart still burned with Suzy’s singular resolve and stammered with all my old uncertainties.

“Ambassador?”

A small woman touched my elbow. The gesture was tentative, but the face was brave. She met my eye with the piercing blue gaze I’d come to appreciate since assuming my post at the U.S. Embassy in Hungary. She might have been a doctor or a survivor or a sister; we all looked the same in our heavy winter coats. Rich and poor, men and women, young and old, we were all bundled in leather and down, chins tucked low in our wool scarves, cheeks and noses glowing from the light but biting wind.

“Hello,” I said, leaning in to close the ten-inch gap between my tall frame and her small one. “I’m so glad you’re here.”

“I just wanted to thank you,” she said. “I don’t know if we would have had the courage to do it without you.”

My Hungarian was sparse and labored, and because I love the sound of the language, I’m reluctant to butcher it. I put my arms around her, wishing I had the vocabulary to tell this woman there was never a doubt in my mind regarding the courage of the Hungarian people. Their natural tenacity and stubborn pride, their resilience through tortured centuries of wars and rumors of wars, the eagerness of their young scholars, and a general willingness to progress—everything I loved about this great country—surrounded me every day of my sojourn with its beautiful people and spoke to me through its magnificent art.

While I was still living in Budapest, I began the collection of paintings that now sojourn with me.

Béla Czóbel’s
Reclining Girl
rests in a jumble of rich, womblike colors, brushstrokes, shadows, and textures. Up close, it’s chaotic; she doesn’t come easy. But step back ten feet, and she makes complete sense. Much like any real woman, I suppose. Her creator was prolific and painted for a long time. She wasn’t his only love, but his affection for the reclining girl is lush and apparent.

Róbert Berény’s contrasting images in
Still Life with Pitcher and Fruit
and
Still Life with Blue Pitcher
tell two love stories: The pitcher in
Pitcher and Fruit
suggests a naked (and well-endowed) man strutting his stuff while the mordantly female fruit lies nearby playing hard to peel. The
Blue Pitcher
pitcher keeps his pants on, behaving properly in a formal
setting, but his apple admirers are vibrating inside their skin. You get the feeling they’re about to jump off the platter.

When I look at these works, I’m reminded what a revelation it was for Suzy and me when we spent that summer exploring Europe’s tapestry of art and politics.

There’s a Rembrandt feel to Mihály Munkácsy’s
Tin Drum
boy, who stands barefoot and grinning in a dark, stubbled field. His clothes are ragged but clean, and he beats his battered drum with found sticks—thumb-thick twigs he’s picked up off the ground or broken from the branch of a dead tree. You’ve never seen anyone with so much nothing and so much something all at the same time. He’s there where everyone else isn’t, making whatever noise he can.

You can’t help wanting to follow him.

Higher Learning

A
CCORDING TO
Webster’s Dictionary
, the verb
commence
comes from the Vulgar Latin
cominitiare
, meaning “to have or make a beginning.” People tend to think of commencement exercises as the end of high school or college, but as I watched Eric cross the stage to collect his high school diploma at Landmark and again to collect his degree from Bradley, it did feel very much like a starting point.

Maura de Souza, a bright and beautiful twenty-two-year-old, earned her degree in music from Sam Houston State University, completing her last year of studies after being diagnosed with a high-grade unclassified sarcoma, a virulent, invasive cancer in her abdomen. Maura’s parents and sisters formed a phalanx of support around her. Her friends made paper cranes, wore teal wristbands, and gave to sarcoma research. Members of the Dynamo, Houston’s professional soccer team, could be seen sporting Maura’s teal wristbands as they loped down the field. Her oncologist worked feverishly to get her into a clinical trial that might buy her a few more months, but the week before graduation, it was clear Maura wasn’t going to walk the stage with the rest of the class of 2009. Faculty and administration from the School of Music came to M. D. Anderson with her cap, gown, and honor cord, filing into her hospital room, “Pomp and Circumstance” playing on a CD player, all participants in full regalia.

Dr. James M. Bankhead, chairman of the School of Music, gave a brief commencement address.

“This is a beginning, a celebration of new and wonderful things. While commencement may indicate the culmination of a great deal of work, many years in school, work done in classrooms with many wonderful teachers, wonderful classmates, it is mostly the result of the work of the individual student—a student who is gifted, beautiful, really
intelligent, and fun—a student who is about to go on a wonderful journey that most of us right now can only dream about and hope about. This is about a life well lived … and life yet to come … and we celebrate this life, knowing we will see you again.”

He cleared his throat and added gruffly, “Normally, at this point the commencement speaker is given a gift.”

There was laughter and applause, then the director of choral studies presented a framed diploma, conferring upon Maura Cassiana de Souza the degree of bachelor of music. Crowding into Maura’s room and spilling out into the hall, musical friends and family led by Maura’s high school choir teacher closed the ceremony with “The Lord Bless You and Keep You” in full harmony.

“It was the best graduation ceremony I’ve ever attended,” says Maura’s mom, Erin de Souza. “One of the happiest moments of my life.”

Hospice arrangements were made at home. Erin and the rest of the family surrounded Maura with love and music. She died peacefully on May 19, 2009 with her head on her father’s shoulder.

Watching my mother’s response to Suzy’s cancer experience was an education in co-survivorship for me, beginning with her staunch patient advocacy and ongoing with her care for our family after Suzy died. Erin faced the same journey as she struggled to shift her focus from the overwhelming needs of her daughter to the overwhelming needs of the rest of the family and, last (but not least, dear caregivers, you are not the least), to her own needs. She made her first tentative steps back into life that summer. She went to the gym with a friend, reconnected with her coworkers, and eventually returned to her job as an academic counselor specializing in international students.

“I love hearing stories about Maura,” she says. “Little glimpses into pieces of her life that I didn’t personally witness, her songs and laughter and smile and how she affected others. I heard from someone who made Maura’s chili recipe for a cook-off and took second place. And from the lead guitarist of a local rock group who once jumped off the stage to dance with Maura, leaving his bandmates to finish the song without him. On Maura’s birthday in June, two of her friends released a portion of her ashes from the top of the Eiffel Tower. Another friend sent me a picture of a little boy in Cambodia wearing one of Maura’s teal wristbands.”

October rolled around, and the pervasive pink was oppressive for Erin. Why, she wondered, was so much being done for breast cancer and so little for sarcoma?

“When Maura was diagnosed,” says Erin, “I was stunned to find that drugs being used for sarcoma now are pretty much what they were in the 1950s. So few people have it, it seems like nobody cares.”

The myth of the “magic bullet” that would “cure cancer” arose in the 1970s before we understood the true extent of the diversity of this disease. Now we know the word
cancer
actually describes a family of more than two hundred different diseases, from astrocytomas to Walden-ström macroglobulinemia. There will never be a one-drug-fits-all cancer treatment, and if we parse resources into buckets according to histology, statistically rare cancers are always going to come up with a very small bucket.

If there is a magic bullet that will come to the rescue of anyone diagnosed with any kind of cancer, it’s not a medicine. It’s a mindset.

As little girls in the 1950s, Suzy and I watched Lucy and Ricky Ricardo puffing cigarettes, and—what can I say? We loved Lucy. While neither of us developed a major habit, we both lit up over cocktails in Paris. But in the late 1960s, major awareness efforts (including the Surgeon General’s warning applied to cigarette packages in 1970) ingrained the indelible connection between smoking and lung cancer in the minds of the American public. At the time Suzy was diagnosed, I felt the same way Erin de Souza did.
Why
, I wondered,
are we hearing about lung cancer as if that’s the only cancer there is? Why are we still struggling along with these antiquated treatment options?
But at the same time, I saw the power of that awareness effort to completely upend a cultural norm.

Flash forward a few years to the
Surgeon General’s Report on Acquired Immune Deficiency Syndrome
in 1986, which was frankly slow in coming. Red Ribbon activists were instrumental in forcing the conversation on AIDS and HIV, making people pay attention, ramping up research funding, and shifting cultural biases against those infected with the virus.

From the time I was a teenager, I’d watched and learned, taking lessons in grassroots activism from people like Martin Luther King Jr., Harvey Milk, Gloria Steinem, and Lech Walęsa. When the time came, I beat my tin drum until somebody listened.

“If I have seen further than others,” said Sir Isaac Newton, “it is because I have stood on the shoulders of giants.”

We at SGK gratefully stood on the shoulders of giants, and we hope others will stand on ours. Thirty years ago, there was agonizingly little awareness of breast cancer; now it occupies a giant pink plat of real estate in the collective consciousness. The global breast cancer movement resulted from a perfect storm of cultural, political, and personal influences. The moment, the messengers, and the methodology clicked into place. People were empowered. Will met way. What’s unfolded over the last thirty years is a template for the democratization of a disease.

Breast cancer isn’t an island. The overarching dynamics of this movement have created a rising tide.

“For many women with low resources,” says SGK board chair Alexine Clement Jackson, “breast cancer screening is the only doorway into a health care system from which they’ve previously been excluded. Prostate cancer screening based on the breast cancer model does the same thing for men. Our focus is breast cancer. We have to do what we do. But the greater goal is to solve the disparities that plague health care access in general.”

On the advocacy front, amid the maelstrom of conflicting ideals that formed the health care reform debate in 2009, our Advocacy Alliance stood beside Republican senator Kay Bailey Hutchison of Texas and Democratic senator Sherrod Brown of Ohio, who linked arms across the aisle and put forth an amendment pushing for access to clinical trials, and we’ll continue to push hard for legislation that would require Medicare, Medicaid, and private insurers to pay for clinical trials, not just for breast cancer, but for all types of cancer. Clinical trials are the best—sometimes
only
—hope for patients with rare cancers, and the knowledge we gain from trailblazers like Maura de Souza is the best hope for the more than ten thousand people diagnosed with sarcoma the year she died.

In the scientific arena, breast cancer funding has opened doors and windows in the fields of molecular biology, immunology, and research method. We’ve supported many projects that bring together patients and scientists, and since 2008, our knowledge has expanded with donations of healthy breast tissue to the SGK Tissue Bank, a one-of-a-kind research facility at Indiana University’s Simon Cancer Center.

To chart the journey of a cell from a normal to malignant state, it’s imperative that we have healthy tissue for comparison. In January 2010, forty members of the Zeta Tau Alpha fraternity traveled to the IU Medical Center in Indianapolis. There technicians drew blood, administered lidocaine, and through a small incision, collected about a gram of healthy breast tissue from each of the sorority sisters. Talk about “giving of yourself”—I wish I could have been there to hug every one of these extraordinary young women as they got off the bus. Researchers at Dana-Farber Cancer Institute in Boston and Walter Reed Army Medical Center in Washington, D.C., are already benefiting from their contribution to this critical research.

We commence.

We move forward with a common spirit of seeking, a desperate need to learn, and a selfless desire to help. Maura de Souza, the Zeta girls, and a legion of giants go with us. As we explore the vast, perplexing cartography of cancer, each tissue sample and each molecular slide offer a tiny piece of the map, and every day is a new beginning.

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