Promise Me (35 page)

“Let me get this straight,” she said. “You wanted to award a $100,000 grant to the University of Texas Medical School. So you wrote out a check, scrawled
Dr. Sprague
on an unsealed envelope and handed it to him—$100,000.”

Well, when she put it like that, it really didn’t sound right. At the time, I was just so elated about awarding the six-figure grant! This sort of casual-Friday practice was now a thing of the past. No more kitchen-table meetings, agonizing over every little check we wanted to write. Now there was a procedure, and we went by the book, but unlike other nonprofits, the volunteers actually oversaw the staff; our power core was still very much in charge.

Jill Smith, one of three vice chairs who served with me as founding chair, remembers: “We had well-known Dallas women with famous names sitting on our board. That’s how we built it up. They came in their dress suits and drank tea. But these women were so bright and so capable, we wanted to make it a working board. We changed the bylaws and required that they raise money and serve on a committee. I was scared they’d walk away, leaving us with no money and no support. Instead, they stayed and took responsibility for the organization. People started sending in résumés, asking to be on the board.”

I stayed on to chair the board of directors, and I was unapologetically bossy about it. This was my sister’s name. Human nature being what it is, and big organizations being what they are, shenanigans happen. I wasn’t about to let them happen in my sister’s name. I still feel the same way. In all the years of evolution (and a few moments of revolution, as well), Suzy has been the one constant in this organization. She anchored us to our vision from the beginning. Through the late 1980s, we saw rapid growth. The message caught fire and spread.

At our 1984 awards luncheon, we presented the Betty Ford Award to the beautiful and courageous Gigi Hill, who’d long been a pillar of Dallas society. The award recognizes those who’ve made significant contributions to increasing breast cancer awareness and is often presented to bravely outspoken survivors. Seeing Gigi there at the head table with Betty, people recognized her as one of their own. This wasn’t an
arm’s-length charity to benefit the conveniently faceless “needy”; this was a fight for the lives of their own sisters, wives, and daughters.

“But we’re never going to solve this problem if we stay in one city with one group of people,” I told Mommy. “We have to raise awareness, raise money, and give it away the best way possible. We have to see it through, from the lab to the clinic, and translate that to the deepest, darkest reaches of the population where women aren’t getting decent care.”

Without knowing it, we’d already begun to spread our wings. In 1986, Nancy Paul founded the Canadian Breast Cancer Foundation, which was patterned after SGK and later became our staunch ally. That same year, we had our first Race for the Cure outside of Dallas. Of course, this had to happen in Peoria. Suzy’s dear friend Linda Washkuhn stuck by Suzy to the very end, and as soon as she heard what we were doing, she told me, “I don’t know what I can do, but I’ll do something!”

She got the Peoria chapter rolling and her fabulous posse put together an amazing event. The weather was nothing short of glorious. We’d hoped for a thousand people, and twelve hundred came. Dr. John Miller organized what would later be called “3 Miles of Men,” a line of great guys in tuxedos, handing out swag bags, cheering on the walkers and runners. The decorations were feminine and fun—totally Suzy—and it was incredibly moving to see this demonstration of public affection for her. Peoria loved Suzy as much as she loved Peoria. Memories were all around us. I must have heard a hundred Suzy stories that day, big and small acts of kindness for which she’ll always be remembered in her hometown.

The first year, the Peoria Race for the Cure brought in about $20,000. In 2004, they brought in $600,000. In 2006, the twenty-year total for the Peoria Race for the Cure had come to more than $6 million. I can’t begin to tell you how proud I am of my dear hometown and the vibrant, unstoppable crew Linda and company have built there. That 1986 Peoria race was an important first step out of Dallas.

Scott was a solid and industrious sixteen-year-old by this time. It hardly seemed possible. He would have towered over Suzy, and she would have loved that. Steffie was twelve, and she seemed fairly overwhelmed by the day. She was touched and appreciative of all the stories about her mom, but she said later, “I was kind of jealous. All those strangers knew her better than I did. I was the only one who didn’t remember her.”

This might be the appropriate moment for me to explain that I’ve purposely written and spoken very little about Scott and Steffie in public. Their father is a private man who never wanted them to be “poster children” for a cause, famous for the worst thing that had ever happened to them. I’ve always respected that and will continue to do so.

I hope it goes without saying that they’re an important part of my life, in my thoughts daily, and always close to my heart.

I
n 1986, reactor number 4 at the Chernobyl Nuclear Power Plant melted down,
Oprah
debuted, Jill Eikenberry and Gloria Steinem were diagnosed with breast cancer. V. C. Andrews (author of
Flowers in the Attic
and other chiller-thriller blockbusters) died of the disease, along with 40,534 other women in the United States.

That same year, Rose Kushner, Ruth Spear, Diane Blum, and I got together and formed the National Alliance of Breast Cancer Organizations. I was proud to be part of it, but we were a scrappy bunch with wildly differing political views, and no fear of speaking our minds. Sometimes we giggled like eighth graders at a slumber party; other times we went at it like gladiators, but we were in the trenches together with a common goal and the same burning zeal. With Race for the Cure events coming together in several cities, we put together planning and support materials that would make it an eminently doable and consistently participant-friendly event. The first Race for the Cure logo featured an abstract runner outlined by a pink ribbon, and we liked it so well, we kept it for almost ten years.

We were making more and bigger research grants, and in addition to researching the best places to put that money, I was puzzling my way through two difficult decisions women face after breast cancer treatment and recovery: reconstruction and hormone balance. The hormones and other “female troubles” were a bit of a struggle; long story short, I ended up having a hysterectomy. I discussed the reconstruction issue with Mommy, who completely understood both my motivations and reservations. I discussed it with Norman, who let me know he was going to love and desire me with or without my left breast. If anything, he found my battle scar strangely sexy. In his mind it represented triumph, not loss;
it was a symbol of overcoming. Riding the far reaches of the ranch in McKinney, I discussed it with Suzy and finally came to a decision.

My research turned up an excellent surgeon in Atlanta: John Bostwick, co-author with Karen Berger of
A Woman’s Decision: Breast Care, Treatment, and Reconstruction
. After reading
A Woman’s Decision
and weighing all my options, I went to Atlanta and had my left breast rebuilt and my right breast reshaped to match it. A few months later, I went back and had Dr. Bostwick install a beautiful nipple, using a tattooed skin graft from my thigh. When it healed, I went to Neiman’s, as giddy as a thirteen-year-old, and bought my new breasts their first bra.

In 1987, Margaret Thatcher was elected to a third term, AZT and Prozac hit the pharmaceutical market, and Kate Jackson and Nancy Reagan were diagnosed with breast cancer.

In 1988, Benazir Bhutto became the first Islamic woman prime minister of Pakistan,
A Fish Called Wanda
was in movie theaters, and Eileen Brennan and Sandra Day O’Connor were diagnosed with breast cancer.

In 1989, the Berlin Wall was torn down, and
The Joy Luck Club
was published. Bette Davis and another 40,000 women died of breast cancer. We launched the Susan G. Komen National Toll-Free Breast Care Helpline. Our first chapter beyond our core group in Dallas opened its doors in San Francisco, and this affiliate is still humming with that fantastic energy unique to the Bay Area. Our first major corporate relationship began when New Balance joined us, and they’ve stayed with us for more than twenty years now, sponsoring Race for the Cure, our Breast Cancer 3-Day, and Marathon for the Cure in addition to a massive in-store promotion, Lace Up for the Cure. The lasting relationships with our local affiliates and sponsors mean so much to SGK and to me personally. I’m continually inspired and held accountable by their unshakable belief in what we’re doing.

Later that year, I was appointed by President Reagan to serve on the President’s Cancer Panel, the first breast cancer advocate at the table.

Rose said, “It’s about time.”

Lesions in her lungs had metastasized throughout her body, but she was still fighting with every breath, making phone calls and rabble-rousing from her hospital bed.

“Go to M. D. Anderson,” I tried to tell her. “I’ll go with you, Rose. You could get into a clinical trial.”

“I’m not going to do that to myself just to buy a couple of months,” she said.

It was her choice. There was never any question in anyone’s mind about Rose Kushner’s ownership of her own body.

In 1990, Lech Walęsa became the president of Poland, and
Seinfeld
made its debut. Jill Ireland and Rose Kushner died of breast cancer. Jill had lent her fabulous face and poignant voice to SGK over the years, and Rose—well, her contribution to the breast cancer movement is historic. She’d been shunned and ridiculed in the beginning; now the Society of Surgical Oncology posthumously awarded her one of their highest honors, the James Ewing Layman’s Award, in recognition of her outstanding contribution to the fight against cancer.

One of the hazards of my work is that I end up loving a lot of women with breast cancer, and every time another great woman dies, it’s like losing Suzy all over again. It’s happened more times that I can stand to think about, and even though I know it’s coming, it crushes me and makes me feel like such a failure.

By 1990, we’d been shouting from the rooftops for seven years. That year 54 percent of American women over forty received a mammogram, which was an improvement over the bad old days, but we still had a long way to go. A lot of insurance companies routinely denied coverage for screening tests, even when a woman presented with a lump in her breast, and as studies raised questions about the efficacy of mammograms—false positives and missed tumors—we started wondering about the equipment being used and the competency of the people reading the results. We’d made some strides in the awareness department. The research piece was growing more and more exciting. It was time to focus on advocacy.

“Politics is the art of the possible,” said Max Fisher.

A great Jewish leader, philanthropist, and Republican statesman, Max had taken me under his wing. He and his wife, Marjorie, were important mentors in my life, good friends with great souls. Max lived by a philosophy of patriotism and giving, and he knew how to get things done without being a bully. I plagued him with questions, and he schooled me
on the workings of Senate subcommittees and appropriations and the deal making that happens over dinner and out on the links. We talked for hours about the imperative of integrity and dedication to the greater good.

“We have to do more,” I told Norman, “and we have to do it better.”

Over the years, I’d been watching the way Norman scouted locations and opened new restaurants. Expansion. Evolution. He was always looking at the next step.

The moment I walked into Judah Folkman’s lab, I said, “We have to fund this research.”

While Dr. Folkman was still at Harvard, he’d pioneered the design of an early pacemaker. While he was in the navy, he’d developed a time-release drug delivery device and donated it, patent-free, to the worldwide Population Council, who used it to develop the Norplant birth control method. At Boston Children’s Hospital, he got the idea that cancer could essentially be starved to death by inhibiting angiogenesis, the process whereby a tumor generates blood vessels that feed it. For more than twenty years, his theories had been scoffed at, but the year SGK was founded, he indentified a capillary growth stimulator, and less than two years later, a capillary growth inhibitor, which laid the foundation for an entirely new thought process when it comes to metastatic disease. Another twenty years of research, trials, and the refining fire of scientific process resulted in FDA approval of bevacizumab (Avastin) for the treatment of metastatic colon and lung cancers in 2004 and metastatic breast cancer in 2008.

We were also among the supporters of Australian biologist/bioethicist Elizabeth Blackburn, who won a Nobel Prize in 2009 for co-discovering telomerase, an enzyme that affects the stability of chromosomes. Early in her career, we recognized the importance of her work in molecular and cellular biology.

In our first fifteen years, SGK awarded a little over $11 million in research grants. The lion’s share—three-quarters of that—went toward biology. We felt there was a need to increase basic biological knowledge of this disease to lay the groundwork for advances in treatment and detection. In 2008 and 2009, we awarded more than $160 million in grants,
and well over half of that went toward the translation of that hard-won knowledge to treatment, detection, and prevention.

A
s Eric made his way through elementary and middle school, Norman was tough on him, but Eric took it in stride. His childhood was a wide-ranging wealth of experiences that included mucking out stalls in the barn, attending city council meetings, and dining with political figures, entertainment luminaries, and giants of industry. When Norman received the Horatio Alger Award, Eric and I were seated next to Governor Mario Cuomo. Eric was about ten years old, and he impressed everyone at the table; he knew when, how, and how much a kid could appropriately contribute to an adult conversation. Governor Cuomo excused himself after most of us had finished eating, but he’d hardly touched his lamb chop, and my growing boy was still hungry, so I scooped it over onto his plate. Much to my surprise, the governor came back, and much to the governor’s surprise, my knife and fork were on his empty plate. Perhaps not the greatest example of state dinner etiquette, but a teachable moment in which Eric saw that everyone’s just folks when it comes right down to it. Someone snapped a wonderful photo of the three of us just as Governor Cuomo and I burst out laughing.