Zora
Brown’s longtime enemy caused her to remake her life to educate
African-American women about breast cancer.
By
Marc Silver
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.”
Support for Her Sisters
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 (www.bcresource.org),
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.
Zora
and Cancer, Round Three
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.
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.”
Zora the Fox
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.
|