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
ACCORDING 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 macr
oglobulinemia. 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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Pride and Protocol
While I was in Budapest, Laura Bush came to visit, and we spent our days together visiting hospitals and cancer wards. I can’t overstate what it meant to these women who so often felt forgotten and pushed aside to have the First Lady of the United States sit on the edge of their beds and hold their hands, chatting with them through the interpreter, asking about their treatments and their children, and telling them how much she appreciated their beautiful city.
If I’m ever lost in the woods, Laura is the one I want with me. She’s the kind who can read a compass, identify the edible berries, craft a Jeep Cherokee out of a piece of driftwood, and have us on our way before nightfall. She’d have my back. That I know for certain. With both our busy lives, Laura and I didn’t get to talk as often as we would like, but I’ve always known she’s there if I need her, and I hope she knows that about me.
I think we’re always attracted to people who have the qualities we wish we had ourselves. Laura is extremely intelligent and doesn’t forget anything. Unlike me, she is patient. She understands people and always says the appropriate thing. More than anyone else I know, she has a way of articulating what needs to be articulated, always in the nicest possible way. She’s not a grandstander, never pushy, but she has a presence that brooks no nonsense. She’s a lady. She gets it. She took a lot of pride in doing the small things—for her daughters, her home, her husband—and as a volunteer, she was always willing to do the jobs no one else wanted to do. Even when she was First Lady of Texas, she stayed active and devoted time to SGK, coming to events and staying until the last dog was hung. She knew it meant a lot to the other volunteers to spend time with her, and she was glad to spend time with them.
I suppose I’m biased, but I think she was a great First Lady.
“Thank you for coming,” I told her during a quiet moment in Budapest. “It’s so nice to hear someone speaking English.”
“Have you had a lot of visitors?” she asked.
“A few. Some American and European CEOs, congressmen. Bob Taylor called and filled me in on everything at home. Eric came. Mom and Daddy had a lot of reservations about my being here, but they came and had a wonderful time. Daddy’s not well. I’m worried about him.”
Ultimately, though I would have liked to remain in Hungary for another year, I came home in the fall of 2003 because I had a feeling there was something seriously wrong, and there was.
Daddy had stomach cancer.
He kept working through his treatment, and Mommy rose to the occasion as always. I bought a house in Florida so I could be close to them. Daddy and I talked every day. He was always my first stop for advice. He never tried to tell me what to do or to spoon-feed me an answer; he asked the right questions and listened while I talked it through for myself.
At the seventh annual SGK Mission Conference in 2004, every session felt electrified with purpose. The astonishing growth of our organization had made it possible for us to fund a wide range of research projects and community-based services. Along with new and innovative clinical stud
ies, we were looking for new and innovative ways to address disparities in underserved populations. There was a lot going on in the world, and it was an election year. We were doing our best to stay focused and certainly not looking for trouble, but we got into a political dustup that would turn into a frustrating distraction when one of our valued corporate sponsors, Curves (a chain of workout centers for women), withdrew their support and denounced SGK because some of our local affiliates had made grants to their local Planned Parenthood chapters.
When you donate to a local SGK affiliate or support a walker in a Race for the Cure, 75 percent of that money stays right there in your neighborhood to serve local women. We don’t spend money building Susan G. Komen Breast-Cancer-R-Us facilities; we get the most bang for our buck by funding services that can be offered through existing local infrastructure. The grants in question supplied breast health counseling, screening, and treatment to rural women, poor women, Native American women, many women of color who were underserved—if served at all—in areas where Planned Parenthood facilities were often the only infrastructure available. Though it meant losing corporate money from Curves, we were not about to turn our backs on these women. Somehow this position translated to the utterly false assertion that SGK funds abortions.
As controversy swirled, several pro-life advocates, including Catholic bishops and Sister Carol Keehan of the Catholic Health Association, sprang to our defense. Unfortunately, the false assertion has persisted for years, hopping around the blogosphere like a poisonous frog to this day, frequently coupled with the ridiculous old wives’ tale that abortion causes breast cancer.
“Well-conducted research consistently fails to support this claim,” our chief scientific adviser, Dr. Eric Winer, said in an open letter. “We agree with the bulk of scientific evidence—from the National Cancer Institute, Harvard, a rigorous study in Denmark and from Oxford University—that there is no conclusive link between breast cancer and induced abortion or miscarriage.”
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