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.
As 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.
Eric had the same learn-outside-the-classroom style I did. Norman and I expected good grades, and Eric worked hard to deliver, but numbers were hard for him at first.
“If you work hard enough, you can learn anything,” Norman insisted.
“But sometimes you learn it a different way,” I tried to tell him. Norman came from a mindset and a generation where the only two learning disabilities were “lazy” and “stupid,” and Norman knew Eric wasn’t stupid, ergo …
“Three times seventeen,” Norman was constantly drilling. “Six times twelve.”
I had to bite my tongue sometimes. I knew it wasn’t right for me to get in the middle of their relationship, and their relationship overall was pretty great. Eric adopted a stray dog, and Norman was impressed with the patience and responsibility that brought out in Eric. He named it Underdog—“Undie” for short. The two of them immediately had that “boy and his dog” rapport. Life was a lot of fun. We played polo, traveled, and skied. Brenda, Cindy, and I threw several Annual Forty-Ninth Birthday parties for Norman. We all worked hard, but we always made time for each other.
When Eric was twelve, he wanted to start working for Norman, and Norman agreed to find him something in the mailroom,
but he didn’t cut Eric one inch of slack, and I knew I couldn’t either. On the day he was to start work, Eric came into the kitchen freshly scrubbed and ready to take on the world.
“Are you taking me to work or is Dad?” he asked.
“You’re taking the bus,” I said. “And you’d better hurry and pack a lunch. You won’t have any lunch money until you get paid.”
Naturally, Eric reacted as if I’d thrown him off the lifeboat. “You’re so mean!”
“Eric, you don’t want people to see you ride up in the boss’ car. While you’re at work, you’re an employee, and Daddy is Mr. Brinker, just like he is to all the other employees. The only difference is you’ll work twice as hard as anyone else there because you know they’re all watching you.”
He set his jaw, packed his lunch, and went off to meet the bus. It was good for him. Sometimes he didn’t get home until a little later than I would have liked, but he was happy. He quickly made friends with all the regulars on the bus, working people, men, women, young, old, black, white, and Hispanic. They loved him because he was polite and respectful and loved to listen to their stories. Everything was great until the night he didn’t come home. I came unglued.
“Why did you make me do this?” I raged at Norman. “He’s gone! He’s kidnapped!”
Norman went out to look for him, but an hour later, Eric trudged in with his blood-spattered shirt in his hand.
“Oh my God!” I ran to him. “What happened? Where are you hurt?”
He wasn’t hurt at all.
“The bus was in an accident,” he said. “A lady got hurt, so I took off my shirt and wrapped it around her.”
Eric wasn’t into polo, but he loved being at the field with us, talking to people, industriously selling programs, and listening in on grown-up conversation. He and Norman would go out driving on scouting excursions, checking out possible locations for new units. Norman would ask Eric, “What do you think of this corner?” Eric would say, “I like it” or “I don’t know, Dad. Traffic pattern doesn’t look right.”
“He’s got a good eye,” Norman told me. “And I think he’s getting better with his numbers.”
“Business in Wichita is improving,” Eric remarked at dinner one night. “Dallas is taking off too. And Boca Raton is zooming.”
“See?” Norman said proudly. “I told you he was getting better at numbers. He’s been reading the sales reports!”
“Oh, no, Dad,” said Eric. “It’s because I’m in the mailroom. Those receipts are heavier than they used to be.”
We had a good laugh about it, but it was an interesting comment on the way they worked together. They made a good team. Eric saw forests; Norm saw trees.
The numerical and the empirical. The statistical and the anecdotal.
That’s the crux of the ongoing—and going and going—debate about screening. A study pops out, demonstrating with statistics that screening is next to pointless, and on the heels of it come a rush of stories from women whose lives speak quite the contrary. It’s not conflicting information; it’s the same information sifted through two different value systems.
For me, it’s a moot point. What it comes down to is a woman’s right to establish her own value system when it comes to her own body. If she wants a mammogram, she should have a mammogram. That’s what we were fighting for, and the state of Texas was the first to change laws, requiring insurance providers to cover mammograms. In 1992, we helped push through the Mammography Quality Standards Act, which requires facilities and technicians to be meet certain standards to be accredited. (Just the beginning of our continuing quest to make mammography more accurate, more accessible, and more technically precise as a diagnostic tool.)
Meanwhile, Eric grew to be a tall and capable young man. He was becoming more and more frustrated in school, being pulled out of class half the time for tutoring. Searching for resources that might help him, Norman and I heard about Landmark School in Boston, which specializes in teaching high-potential students with learning differences. It was an adjustment—more for me than for Eric—when he went off to school, but his confidence soared along with his reading and math scores. He was part of a community. He was excelling. I missed seeing him every day, but it was wonderful to hear his voice on the phone, thriving and happy, as he grew by leaps and bounds. We made the most of every weekend and vacation that he spent with us. During the summer, he learned to wait tables and earned his own spending money. When he wanted a car, we told him we’d pay half. He worked hard, saved his money, and ferreted out a secondhand but still functional Jeep. Eric graduated from Landmark and went on to Bradley University in Peoria. He loved being close to Mom and Daddy, who divided their time between Florida and Peoria, and I loved that he was living in the Land of Milk and Honey.
More Race for the Cure events were popping up all over the country—seven in 1990, including the National Race for the Cure in Washington, D.C., where we launched our National Series Breast Cancer Survivor Recognition program with the help of Vice President and Marilyn Quayle. Turnout was massive. Every survivor was given a pink visor, and they were as countless as cherry blossoms. At our Tenth Anniversary Gala in 1992, Senator Connie Mack and his wife, Priscilla, were presented with the Betty Ford Award, with Betty Ford doing the presentation, as always. Vice President and Mrs. Quayle were there, along with President Ford, Nancy Reagan, and Lady Bird Johnson. We presented our first Brinker International Awards for Breast Cancer Research to Dr. Bernard Fisher, who’d advanced the science of adjuvant therapies, and Dr. V. Craig Jordan, who discovered the preventative properties of tamoxifen. Support flooded in from diverse sources, many of whom remain friends and partners to this day, including the Zeta Tau Alpha fraternity and the ZTA Foundation.
SGK was such a huge part of our lives. It would have been impossible for me to have both my family and this all-consuming decade of work had I been married to anyone else. Sitting next to Norman at the monthly board meetings, I’d feel his knee nudging mine. He always held my hand, but kept it under the table, so I wouldn’t look like a woman who needed hand-holding.
Every once in a while, he’d look at me as if I’d hung the moon and say, “I knew you had this in you.”
Over the early years, people kept telling me we’d never survive unless we allowed ourselves to be absorbed by a larger organization, but that was no longer the vision. Our vision was to be the larger organization, and instead of absorbing the small foundations that sprang up, we’d help them grow—or at least not get in their way. We’d come a long way in a short time. Now there was no stopping us, and as stingy as we were with our operating costs, we weren’t about to hand a bag of money over to an umbrella organization for the privilege of having them tell us what to do. Our foundation stood on its own feet.
Others keep trying to convince me that what we really need is to build a big building. I see where they’re going with that idea, but why would we invest all that money in a facility that would stand for a hundred years? Our greatest hope is to finish what we came to do, eradicate breast cancer forever, and close up shop. I dream of the day we’re no longer needed. I hope I live to see it. When the work is done, I’ll happily walk away, put my feet up, gaze at some great Hungarian art, and celebrate the promise kept.
SGK celebrated a great milestone in 1991: For the first time, we made more than $1 million in grants funding breast cancer research projects in a single calendar year. The grassroots grew; our corporate partnerships flourished. Every once in a while, I’d remove my nose from the grindstone just long enough to notice how much things had changed.
It was astonishing.
Between the beginning of 1988 and the end of 1992, the world changed more than a little. Tiananmen Square became an icon, apartheid ended, the Warsaw Pact dissolved, the iron curtain collapsed, the Soviet Union foundered and fell apart.
Evolution and revolution everywhere.
And another 215,039 American women died of breast cancer.
From Point A to Point B
“EVERYBODY HAS a story about why they do what they do,” says Dr. Fredika Robertson. “Science is a very personal endeavor. Believe me,” she adds wryly, “we’re not in it for the money and glory.”
About fifteen years ago, Dr. Robertson was invited to join an epidemiologist friend in a study related to anti-inflammatories and the cyclooxygenase-2, or “COX-2,” gene.
“I said sure,” says Fredi, and you can hear in her voice how completely fascinated she is with her specialty, molecular biology. “We designed experiments, obtained samples from patients with early metastatic disease, and learned that this COX-2 gene is unregulated in patients whose disease has spread.”
She would go on to establish links between COX-2 and estrogen and the enzyme aromatase, which is key to estrogen production. The study, published in 1997, caught our eye because of promising data we were seeing in the field of aromatase inhibitors. Less than a year later, while conducting a lab meeting, Dr. Robertson reached down to pick up a pen, and everything burst into shooting stars. A tumor in her brain had caused a massive hemorrhage.
“It hurt,” says Dr. Robertson, who is not one for hyperbole.
The physician at the urgent-care “doc-in-a-box” facility happened to be a resident she’d trained. He asked her if she thought she had spinal meningitis.
“No,” Fredi managed. “Do an MRI.”
After what seemed like a long time, she saw a flurry of white coats rushing into the room.
“Later on I saw the brain scans,” she says, “but you can’t even really see the brain. They told me in front of my sixteen-year-old daughter that I wasn’t going to make it, and I said, ‘No, I don’t accept that.’ That’s something I’ve learned over and over from the patients I’ve worked with. They come into M. D. Anderson with a terrible prognosis, Stage IV, looking for a second opinion after someone told them nothing could be done—and yes, some of them die, but some of them get through it.”
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