“Nan.”
“Hmmm?”
“I was thinking about Betty Ford,” she said. “She took the chemo. If she can do it, maybe I can too. And if the First Lady of the United States can stand up in front of the whole world and admit she has breast cancer and she intends to fight it, …”
A nurse opened the door and called, “Susan Komen?”
I squeezed her hand. “You can do it, Suz. Mrs. Ford did it. You can do it.”
In a dangerous, high-speed polo match, the all-consuming objective is to hit the ball into the goal. In the process, the grass is torn up, palms are blistered, and noses bloodied. It would be an unusual match if no one was hurt to some degree, but there’s an acceptance of that before the game begins. The players know there will be collateral damage, but they ride out anyway, in pursuit of that all-consuming objective. Not because it’s easy, but because it’s hard.
Perhaps that’s too cavalier a way to describe the people who make their lives and livings in the cancer treatment industry, but I’ve observed that same brand of undeterred passion in one cancer ward after another. The oncologists, nurses, researchers—even many of the housekeeping and clerical staff—are focused on the goal. They know that sooner or later they’ll be hurt, because they can’t insulate themselves from caring, but they show up every day and care anyway.
Up to this point, Suzy was basically in the care of one physician at a time. He told her what to do, and she did it. That’s the way it worked back then. People were trained to follow “doctor’s orders,” and a lot of physicians were autocratic—and undeniably sexist—in the way they doled out those orders. At M. D. Anderson, there was a completely different modus operandi. Doris Bechtold, the wonderful patient care coordinator, met us at the door the very first day. A team of people was assembled to respond to Suzy’s individual situation. Each team member brought his or her particular strength and expertise, but Suzy was indisputably in charge as they rode out in tight formation.
Her oncologist, Dr. George Blumenschein, was a Cornell man who’d done his postgraduate work at Bellevue Hospital in New York; the National Cancer Institute in Bethesda, Maryland; and Duke University Hospital in North Carolina. His credentials were varied and impressive, his work was well known and respected, and his patients adored him for his gentle good humor. The entire staff at M. D. Anderson was (and is) so wonderful, it’s impossible to list all their names and praise each of them adequately, but I remember being awed by Dr. Blumenschein’s breadth of knowledge and so very grateful for the way he empowered Suzy with hard information and encouraged her with realistic hope. He had enough respect for her strength and intelligence to pull no punches.
“You’re Stage IV,” he said. “The most critical scenario possible. I’d put your chances of long-term survival at about 25 percent. But there are aggressive measures available to you here, if that’s the way you want to go.”
Suzy said, “I want to fight it.”
“Okay,” said Blumenschein. “As long as you won’t give up, I won’t give up.”
“Okay.” She nodded.
“Let’s give it all we’ve got.”
He recommended removing the lesion from her lung and offered her a place in a clinical trial—an experimental program researching a state-of-the-art treatment protocol. Suzy started receiving a chemotherapy cocktail of powerful drugs, including steroids intended to beef her up enough to withstand the onslaught of good old doxorubicin—“the red devil”—and other chemicals.
I suppose you could apply the polo dynamic to chemotherapy on a cellular level; you go into it knowing there will be collateral damage, but that all-consuming objective is worth risking everything. These days, far more options and better-targeted treatments are evolving, but in 1978, there were less than a dozen drugs commonly used against breast cancer, and it was very much a shotgun approach. Chemo was designed to attack fast-growing cells, and there was nothing “smart bomb” about it. The toxins didn’t differentiate between the fast-growing cell in a malignant tumor or the fast-growing cell in a hair follicle, the endothelial tissue lining the stomach and mouth, or any other part of the body that specializes in constant growth and regeneration.
Within weeks, Suzy was bald and fatigued. Her mouth and throat were pocked with sores. There was a translucent, almost angelic cast to her complexion.
“My skin actually looks beautiful,” she said. “Long way to go for a facial, though.”
Over the many months she was treated at M. D. Anderson, we all tried hard to be with her as much as possible. Suzy’s wonderful friends stepped in at home in Peoria so Stan could go with her sometimes, but Suzy was more concerned for her children than she was for herself, and she knew they needed their father when she was gone. Daddy had a terrible time dealing with the strong emotions that came with seeing Suzy in that setting, but Mommy was there for her every possible moment. I took as much time as I could, though I needed to keep my income alive and hated leaving Eric. Every time he saw me packing my bags, his expression clouded over.
“Mama, are you going again?”
He wasn’t whining, just struggling to understand. I finally decided to tell him the truth.
“Honey, Aunt Suzy is very sick. I hate to leave you, but she needs me now.”
I knew Eric needed me too, and it tore me in half, but astonishingly, that simple modicum of honesty made all the difference to him. He was a preschooler with no concept of cancer, chemo, flight schedules, comp time—all the heavily weighted factors I was constantly juggling. But he accepted without question that when someone you love needs you, you go to her. Of course you do. It really is that simple, and it grounded me to suddenly see it through his eyes.
Month after month, through grueling courses of chemotherapy and radiation, surgeries that left her feeling truncated and unsexed, Suzy came and went through a revolving door of emotion: grace, anger, gratitude, sorrow, laughter, grace again. She was stronger than I ever expected her to be—stronger than I wish she ever had to be.
Mommy, Daddy, Stan, and I worked together to make sure she was never alone in Houston. At least one of us would travel with her and stay at the little apartment across the street from the medical center. We were grateful for the place, because it cost a lot less than hotels and offered Suzy a little home away from home. My apartment in Dallas functioned as the staging area, a sort of base camp where she could decompress on her way to and from each treatment. She adjusted her expectations and lifestyle to the treadmill that kept her alive—a little longer, another day, one more step, one foot in front of the other. I tried to make those Dallas days a treat for her. If she was up to it, we went shopping at Neiman Marcus, had lunch at her favorite places, took in a movie, or visited local art galleries. Sometimes I arranged dinner dates for us with two of my handsome friends, and we spent a good hour beforehand getting ourselves dressed to the nines, doing a full makeup job, playing with her hairdo on the Styrofoam wig head. If she couldn’t find the energy to go out, I made sure she was tucked in with fresh lavender pillowcases, silky pajamas, and a good book.
She looked beautiful, despite the effects of chemo and radiation.
“I’m not fat, I’m zaftig,” she said, as steroids filled out her slight form and softened her sculpted cheekbones. Her skin was luminous and lovely, chemo being the epilating and exfoliating demon that it is. After axillary lymph nodes were removed and the area irradiated, she fought off pain and swelling from lymphedema in her arm, but she wore long sleeves and worked around it. For her second course of chemo, they installed a “Gershon”—a subclavian catheter—in a vein above her collarbone, creating a port through which she could receive IV drugs from a little pump that she wore on a strap around her shoulder. A little Frankenstein-ish, but the veins in her arm had collapsed from all the injections, and this meant they didn’t have to keep searching for new ways to stick a needle in her.
Between treatments, Suzy went home and took care of her family, continued her charity work, even did some
modeling jobs, wearing a sassy little bobbed wig. I took Eric to Peoria to visit as often as I could, and Suzy came up with any plausible excuse to make the occasion into a party for the cousins and neighbor kids. Watching them splash in a backyard pool or tear around playing cops and robbers, I was reminded how green and friendly Peoria is, what a gentle, generous oasis in the world. Suzy loved her life there, loved the people she met in the grocery store, Girl Scouts selling their cookies at the door, shade trees and picnic benches in the park. She was thrilled by the first snow flurries in winter and the first crocus in spring, the cricket-filled nights in summer, the blaze of color in autumn.
Suzy celebrated what would be her last birthday in October 1979.
The effects of treatment mounted with the effects of the steadily advancing cancer. Suzy continued to receive what I now recognize as palliative care—the kind of treatment that buys time with no real expectation of cure—and that time was precious. The whole family settled into a lifestyle that was contorted around all the big and small necessities of Suzy’s survival. It was laborious and stressful, but not entirely unhappy because every day that we had Suzy, we had reason to be glad. Suzy had plenty of reason to despair and feel sorry for herself, but she refused to be sucked into that swamp. She never talked about the possibility—the probability, in truth—that she was going to die. She made plans and spoke eagerly of everything she was going to do “when I get better.”
Suzy spent long hours in the pediatric cancer wards in Houston and Peoria. To this day, I hear from people who remember her reading to the children, talking to them about their treatment, listening to them when they needed to be heard, comforting them when they were afraid. She was deeply concerned for some of the other women receiving breast cancer treatment alongside her. Not all of them had the loving family and financial resources Suzy had. The more time she spent in waiting rooms, sitting on the floor when there weren’t enough chairs available, the more the assembly-line atmosphere rankled her; she found the dowdiness of the waiting rooms and chemo wards so depressing.
“Somebody needs to make this place a little more upbeat. It’s unbearably boring and sad, and that’s the last thing we need right now.” Suzy frowned at the framed dollar-store art. “There should be classical music and something beautiful and stimulating on the wall. Something to remind us how wonderful the world is outside all this.”
“Agreed,” I said, flipping through a seven-month-old magazine. “Some good books wouldn’t hurt.”
“Poetry, maybe. And a coat of paint on the walls. Maybe a cute little tea cart with ginger ale and shortbread and soda crackers to settle the stomach,” said Suzy. “It’s bad enough we have to come here. Maybe if it was a little more inviting, it would make people feel positive and hopeful. When I get better, I’m going to make some changes around here. We’ll do it together.”
I looked at her doubtfully. Frankly, I had no intention of setting foot in this place again.
“Oh, c’mon, Nanny. It’ll be fun,” said Suzy. “Promise me you’ll help.”
Semper Pink
PHUONG-THAO BARNES is pretty in pink. She’s heard people say the color insults and sissifies the seriousness of breast cancer, but anyone wanting to say that to her face will have to catch up with her first.
“My dad met my mom in Vietnam on his second tour during the war,” says Thao. “He went back for a third tour just to get her and marry her. They’re both very strong people. I have the best parents in the world. I’ve always been proud that I’m half Vietnamese, and I love having a Vietnamese name.”
After graduating from Oklahoma State University with a degree in veterinary science, Thao joined the Stillwater, Oklahoma, Police Department. In 2005, after Hurricane Katrina decimated New Orleans and left the NOPD with little more than a skeleton crew, Thao and five other officers used their leave time to go to Louisiana. They were deputized in a neighboring parish and sent into the city.
“The officers there needed a lot of help,” Thao says. “They were scattered and taking fire, having problems getting supplies. We split in half and went with a Special Forces-commanded guard group doing rescue missions afloat. It was pretty rough seeing all the bodies, the hopeless look about the people, all the pets left behind. We slogged around in that contaminated water for fifteen hours each day, trying to make sure no one was left behind.”
Thao received a Distinguished Service medal, and the experience changed her.
“It was an eye-opener. I watched the Coast Guard and thought they were pretty squared away. I love the mission of the Coast Guard. Their motto is Semper Paratus, which means ‘Always Ready.’ These people are out there saving lives, working that mission 24/7.”
Leaving her amazingly understanding husband, David, to care for her horses on their ranch, Thao enlisted. At twenty-seven, she was the oldest graduate at boot camp, but she left the youngsters in the dust, taking the Honor Graduate Award and clocking one of the fastest qualifying times for boat crew. She started training for her first triathlon. It was spring. Life was good. Thao was stunned when she felt the lump in her breast.
Just six months earlier, she’d passed a thorough medical exam with flying colors. There was no history of breast cancer in her family. She’d never smoked or taken a drink. Genetic testing revealed no genetic markers. But suddenly, inexplicably, Thao was facing a grim prognosis; the aggressive metastatic disease had already invaded her lymph nodes. She was Stage III and in for the fight of her life.
“At first, it was like … disbelief,” she says. “And then I got angry.”
Her physician was told to process her for discharge from the Coast Guard, but Thao begged for a chance to resume active duty after treatment. She went home on medical leave. Throughout a punishing course of chemotherapy, Thao dug deep for the energy to work in the Oklahoma recruiting office and raise money for Susan G. Komen for the Cure. Chemo was followed by mastectomy and radiation. Thao participated in Saddle Up for the Cure, riding her horse, Scoutland, in the American Quarter Horses Association’s World Championship Show while she was still recovering from surgery. Her brother, a certified chef, catered dinners for the Susan G. Komen Race for the Cure and the American Cancer Society Relay for Life. Soon the whole family was involved.
“My family was there for me every step of the way,” says Thao. “My husband is like the strongest guy in the world. My parents, brothers, sisters—they’re awesome.”
When Thao was handed her randomly selected number at the Oklahoma City Race for the Cure, she showed her mom and said, “How cool is that?”
It was her old badge number from the Stillwater PD.
Thao took her last hit of radiation in January 2008 and joined her Coast Guard unit in Los Angeles on light duty, requesting full duty every day until they gave it to her. In October, practically floating in all the pink of Breast Cancer Awareness Month, she took the top spot in Coast Guard Gunner’s Mate “A” school (weapons training that involves everything from pistols to 76-mm weapon systems), beating out her classmates, all of whom were male and at least five years younger.
On a recent Facebook posting, Thao quoted Edmund Burke: “The only thing necessary for the triumph of evil is for good men to do nothing.” This remarkable young woman lives the calling “to protect and serve” and has been semper paratus for a host of challenges no one could have anticipated. When the massive 2010 earthquake shook Haiti to rubble and ash, Thao knew immediately where she needed to be, but she was awaiting results from MRIs and other tests she goes through every six months as part of her ongoing breast cancer follow-up.
Thao Barnes is, in short, a superhero. In pink.
Over the years, as breast cancer pink gained more and more exposure, the movement began to experience a backlash. It’s a law of physics: To every action there’s an equal and opposite reaction. I have no retort to the accusation that we’re “pinkwashing the world,” because that’s exactly what we’re trying to do. People used to complain about red, but now we have safe-se
x awareness and antiretroviral drugs for the treatment of AIDS. Red activists plan to stay on task until they’ve rendered themselves obsolete. We plan to follow their fabulous example. The condescension and pink bashing do occasionally hurt my feelings, but far worse, it hurts my mother’s feelings, and I’m ready to put up my dukes when anyone messes with Mommy. Mommy, however, is the first to remind me that, not unlike the Coast Guard, our mission is to save lives. If we’re to remain semper paratus, we have to keep our eye on the ball.
What can I say? As long as women are dying of breast cancer, we’re going to keep talking about it, and this is our style. It was Suzy’s style, and this is my tribute to her. I applaud others who have their own style. Three cheers for chartreuse! Godspeed, indigo! With the survival of young women like Thao hanging in the balance, I’m not willing to divert attention to popularity contests, celebritized egos, or the so-called breast cancer wars between varying schools of thought. Tearing down the good done by others simply isn’t a productive use of anyone’s time and energy.
Sexism is a troubling component in the breast cancer equation. For a lot of reasons. Ironically, pink prejudice cuts most cruelly against men diagnosed with this “female” disease. About ten years ago, we set out to change this with the help of Richard Roundtree. When the ultramacho star of the blaxploitation blockbuster Shaft walked out in front of a press junket with a pink ribbon on his lapel, it was like Iconoclasts-R-Us. People were astonished to learn he’d been diagnosed with breast cancer and had kept it a secret for eight years.
In 1993, Roundtree mentioned to his physician he’d felt a lump in his “pec muscle.” The last thing he suspected was breast cancer. Like Thao Barnes, his initial reaction was disbelief. And anger.
“I thought, No way,” he says. “Men don’t get breast cancer.”
But that year, approximately 1,500 men did, and almost a third of them didn’t survive. When people compared that number with the 40,000 or so women who died of breast cancer that year, some questioned the wisdom of devoting significant money to men’s breast cancer, but we chose to fund both research and awareness—and not just because it’s impossible for us to look someone in the face and tell her the death of her husband, father, or son doesn’t merit attention.
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