The Mark of Zora

When she was only 4 years old, the youngest of eight children growing up in the Brown household in Oklahoma City, Zora Brown overheard her mother chatting with friends about a neighborhood woman who survived breast cancer. The girl heard her mother say, “My grandmother had a mastectomy.” That was a word she’d never heard before.

“My little ears perked up,” says Brown, who at the time wondered what her mother was talking about.

As Brown grew up, she learned only too well what a mastectomy was. If ever there was a cancer-crossed family, it was hers. Brown’s great-grandmother and grandmother both had breast cancer. Her mother, Helen Marie Brown, is, at age 91, a 40-year survivor. One of her three sisters died of the disease in 1990 at age 49, as did a niece in 1999. Brown herself was diagnosed with breast cancer at age 32 in 1981 and had her left breast removed, had a new cancer in her right breast in 1997 and underwent a second mastectomy, and was diagnosed with ovarian cancer last November.

So she knows cancer intimately. In fact, it is part of her genetic makeup. She carries the BRCA1 gene, whose curse is an up to 85 percent chance of developing breast cancer and as much as a 50 percent risk of ovarian cancer. Asked to characterize her relationship with cancer—anger, denial, uneasy accommodation—she does not hesitate a second. “I hate it.”

In 1989, after her sister Belva was diagnosed with breast cancer for a third time, the two siblings co-founded the Breast Cancer Resource Committee, a nonprofit group whose generic name belies its very specific mission: educating and supporting African-American women in their battle with the disease, which tends to strike them at a younger age than it does white women, and takes a greater toll. (The death rate is 34.7 per 100,000 black women, compared to 25.9 per 100,000 white women.) Starting the group, she says, “was a no-brainer. There was no one else speaking on behalf of African-American women.” In the beginning, she recalls, “I begged, borrowed and stole” to fund the group. For initial financing, she drew on her own resources from her career as a venture capitalist. To a large extent, she still does.

By calling for mammograms and breast self-exams and emphasizing the importance of starting such measures at a young age, BCRC has made a tremendous difference for tens of thousands of women. When breast cancer survivors first began speaking out in the 1980s, “there were not a lot of people talking about breast cancer in African-American women,” recalls medical oncologist Doris Browne, MD, a retired Army colonel who manages the breast cancer prevention portfolio at the National Cancer Institute. As a result, says Dr. Browne, “Even when they felt the lump, they said, it couldn’t be breast cancer—black women don’t get it. All the images on TV were Caucasian women.”

Brown has done for the African-American community what her own mother did for her children—she speaks openly and honestly about the risk of the disease and how to fight it. She put her views in writing in the book 100 Questions and Answers About Breast Cancer. And she spreads the gospel in person. “Zora is vibrant and always has that smiling positive attitude,” says Dr. Browne. “It just invigorates an audience.”

The African-American community has also benefited from Brown’s belief in the importance of support groups. Rise, Sister, Rise, a program run by BCRC in Washington, D.C., Boston, Detroit and Charleston, South Carolina, addresses the psychological needs of cancer patients and the specific concerns of African-American women. The name stems from a childhood rhyme: Friends encircle Sally Walker and chant, “Rise, Sally, rise, wipe your weeping eyes.” To Brown, that’s a testament to the power of sisterhood.

The structure of Rise, Sister, Rise reflects Brown’s own unhappy experience with support groups. She tried one when first diagnosed and found it “too disjointed—the discussion was all over the place.” People came and went. Brown wanted to do things differently. Rise, Sister, Rise has a 16-session curriculum for newly diagnosed women, covering everything from how to set boundaries and not feel guilty about it to recuperating from surgery. Doctors and nutritionists speak to the group; patients are encouraged to keep a journal and a food diary, and to “make affirmations”—to say something positive each day. “It can be something as simple as, ‘I am a child of God and I am perfect,’ ” Brown says.

Her biggest wish is for every woman to get the support she needs, and for African-American women to get that support in a place where they feel at ease, where they won’t be embarrassed to ask questions.

After living in Washington, D.C., for 36 years, Brown moved back to her home state last year, drawn by the pull of family. She and her husband, Kenneth Rowland, made the decision in May and, as Brown says, “On June 18, we were in Oklahoma, lock, stock and cowboy boots.” Her niece, Monica Botts, has taken over the reins of BCRC and is now working on a new program to provide patient navigators to newly diagnosed African-American women in Washington, D.C., drawing upon the hundreds of veterans of the Rise, Sister, Rise program. Serendipitously, Brown was offered a job in Oklahoma with Integris Health as special assistant to the president’s office for health and minority initiatives, using her formidable powers as a communicator and strategist to convince the business, educational and healthcare communities to start programs to prevent chronic diseases, such as diabetes and hypertension. “I’m basically creating a broader version of BCRC with funding this time.”

With wry understatement, Brown refers to her latest cancer bout as a “hiccup.” It’s been quite a hiccup. Her stage 3 ovarian cancer diagnosis late last year came after she was scanned and tested to investigate an “incredible” pain in her leg and bloating around her abdomen. A surgeon removed her uterus and ovaries and implanted a port in her chest and one in her belly for chemotherapy. The chest port punctured her lung; it took a week in the hospital to recover. “The surgeon never apologized,” she says.

Her initial treatment consisted of cisplatin and Taxol® (paclitaxel). Round one wasn’t too bad, she says, but after round two, she didn’t bounce back. The problem turned out to be another port glitch. The top of the abdominal port was puncturing her bowel, causing an abscess. So there was more surgery. In February, out came the port (through the same incision) and out came her appendix, too. Her doctor changed her chemotherapy regimen so no abdominal port would be necessary.

Zora knows cancer intimately. In fact, it is part of her genetic makeup. Asked to characterize her relationship with cancer, she does not hesitate a second. "I hate it."

On a beautiful May morning, on a visit to Washington, D.C., for a series of healthcare meetings related to her work at Integris, Brown shows no signs of the traumas she has suffered in the past months. Lithe and lovely at 57, she has soulful eyes and a comforting smile, accented by deep red lipstick and flashing a hint of mischief. Her tangerine suede jacket is an eye-catcher, as are her black slipper-shoes, embroidered with images of jungle beasts. Since her current chemotherapy treatment has rendered her bald, she sports a chic pixie-cut wig. (After catching a reflection of her wigless self wrapped in a white towel after a shower, she jokes that she looked like Gandhi.)

Brown knows only too well that her cancer is quite serious. “You never read anything positive about ovarian cancer,” she says. Even though progress has been made treating early-stage patients, the disease is the most brutal of all cancers of the female reproductive system, claiming 15,000 lives a year out of 20,000 diagnoses. Because the BRCA1 gene also put her at risk for ovarian cancer, she considered having her ovaries removed but delayed because her post-breast cancer insurance coverage was minimal. Still, she always thought she’d have the surgery “before the cancer caught me,” she says. “Wrong.”

Nonetheless, Brown radiates optimism. Her sister, Joyce Webb, was diagnosed with stage 4 ovarian cancer, went through the same treatment and is now 20 years out. “I’m banking on her,” Brown says. In addition, her doctors are encouraged by Brown’s response to chemotherapy. “My tumor markers have come back normal,” she reports. “My oncologist had to run the blood work twice—he couldn’t believe what he saw.” But five-year survival rates do not interest her. “To tell me that is like putting a cap on what I’m able to do.” She appreciates honesty from her docs: “Don’t underestimate or overestimate. You don’t know.”

Brown’s mother has been her guiding spirit in her battle with cancer. Back when even newspapers didn’t use the words breast cancer, Helen Marie Brown spoke frankly about the disease that stalked her family. She told her four daughters about their risk. One by one, each was diagnosed. But they were ready for the fight. They read all they could find so they could make sure they were getting the best care possible. And they could draw support from family members. Brown’s mother would tell her that everything was going to be OK—reassuring words that gave Brown the strength to persevere. Brown’s example is an inspiration to her many nieces, all of whom are at high risk for the disease. From her aunt, Monica Botts has learned “to take cancer as a serious adversary, but to arm yourself with information so that it doesn’t have to be the victor.”

Brown’s hectic life does not allow for “typical days,” but there are certain touchstones. An early riser, up by 5 a.m., she prays and reads from the Bible each morning. Lights go out at 10 p.m., perhaps after sampling one of the many sports-related television shows. “I never knew there were so many different sports channels!” She listens to country music on the car radio, and she and her husband take turns cooking dinner and cleaning up.

One of her favorite meals is the essence of comfort food: baked chicken with garlic mashed potatoes, roasted vegetables and apple pie for dessert. She tries to eat healthily but has given up the macrobiotic vegetarianism of her younger days, when she believed the diet would protect her from cancer. Perhaps it gave her body the strength to withstand the treatments, she muses, but it sure didn’t keep cancer away. When she was recuperating in the hospital after her mastectomy, she craved french fries from McDonald’s. Her first husband, a fellow macrobiotic vegetarian, brought almonds and raisins instead. “I think they’re still picking up almonds and raisins at that hospital,” Brown laughs. Her marriage eventually ended, but it was not because of the cancer (or the fries, which she occasionally indulges in).

In 2001, Brown married her junior high crush, Kenneth Rowland, who wasn’t at all fazed by her breastless appearance. “I said, ‘It’s just like when you were in the seventh grade. You didn’t have any then,’ ” he remembers. (She didn’t opt for reconstruction because she wasn’t certain how long implants would last or whether additional surgeries might prove unaffordable.)

Brown does have blissful days when she doesn’t think about cancer, although not this year. But she hasn’t tired of her cancer activism. She embraces her status as a survivor. “For me, being a survivor is going through any difficulty and coming out alive. I like the term, and I am happy to be one.” She is proud of the work she has done in the world of breast cancer. So is Rowland. “We’re talking about a woman who will meet the challenge. Give her time and she will strategize, she will formulate and she will become victorious.”

Brown has certainly lived up to her dashing and distinguished first name. “People remember it,” she says. But its origins are not what you might think. Her parents were not paying homage to Zora Neale Hurston, the acclaimed African-American writer. Brown’s first name is really Elzora, which in Spanish means “the fox.” Her father liked unusual names, she explains. Eventually, her family gave her the nickname Zora.

In her cancer advocacy work, Brown speaks with urgency and common sense about the importance of taking responsibility for your own health. Yet there is another side to her. When she fights cancer, she uses every trick in the book. And she refuses to let the disease sap joy from her life. Perhaps that is why a friend once told her, “Zora, you make cancer seem like it’s fun.” Remembering the remark, Brown rolls her eyes because cancer is anything but fun.

Yet in the midst of her third bout with cancer, she makes sure to indulge herself. In her spare time on her trip to the nation’s capital, she invited old friends to a party in her hotel room, and she shopped, picking up Indian fabric in shades of burgundy and gold to dress the windows of her Oklahoma City home, where she has been on a makeover rampage, landscaping the yard, installing granite countertops in the kitchen and more. When her husband and sisters tell her to slow down, to stop all this decorating because, for heaven’s sake, she’s fighting cancer, Brown responds: “I need to be doing as much as I can do. I don’t want anyone to assume that I can’t do the things I need to do for myself.” That’s the sly way Zora Brown has outfoxed cancer.