"When I saw her scar for the first time, it looked like a large block of skin, folded over. I would sometimes sit in her room while she got dressed, seeing her place the prosthetic in her bra. Other people would take me places, to school, to gymnastics, but not her. She couldn't do it, she was too sick, especially after the chemo. Her hair fell out. I could hear her retching on the other side of the closed bathroom door, and it made me feel disgusted and revolted. I wanted to comfort her, but didn't know how."
--Anya Booker, on watching her mother die of breast cancer
The specter of breast cancer haunts Anya Booker, a 33-year-old Hollywood filmmaker and screenwriter. It permeates her life, shades her most intimate memories of childhood and emerges as a frequent theme in her work.
She was only 14 when she lost her 45-year-old mother, Poppy, to the disease, and 24 when her older sister, Toy--by then, her surrogate mother and closest friend--died of breast cancer at 34.
"It felt like it was my mother all over again. I was grieving both deaths at the same time," Booker says.
The death of her sister was not just about loss, as painful as that was, it also was about the disease--about fearing, with a growing sense of dread, for her own fate.
Follow the fragile thread of the women in her family: Her maternal grandmother was diagnosed with breast cancer soon after her mother died. She survives, but an aunt--one of her mother's sisters--also contracted breast cancer and recently died. Although Toy was actually a half-sister--the child of her mother from an earlier marriage--a deadly line seemed to run unbroken through her mother's side of the family. All proud African American women with a creative cultural heritage. All riddled with breast cancer. Would it reach her too?
Suddenly, she needed more than consolation. She needed some way to resist, to protect herself from the same killer, or at least a way to gain a sense of security about what might happen to her. She began keeping a journal, using a gift for words to chronicle the unthinkable.
Like Booker, thousands of American women who, because of family history or other risk factors, are at high danger of developing breast cancer are agonizing over whether to take tamoxifen. For nearly 20 years, tamoxifen has been an established treatment for breast cancer after surgery. But in October, the Food and Drug Administration approved the drug's use by healthy women at high risk of getting it.
A trial had produced stunning results: the incidence of breast cancer among women taking tamoxifen was half that of a similar group taking a medically worthless placebo. But the risks were almost as compelling: birth defects, uterine cancer, blood clots.
Should she take it? For Booker, the decision goes beyond the medical implications of using a potent drug--with its own toxicity--before she actually becomes sick. It also provokes a flood of unresolved feelings and unfinished business that so often is the legacy of having loved ones die too soon.
It is about having dreams, and the possibility of not living long enough to fulfill them; about having the courage to make plans regardless of what might or might not happen tomorrow, about weighing the quality of life now against the promise of a future.
'That's Why I've Got to Write'
Booker's best friend, Lisa Walker, has known her since their freshman year at UC Berkeley in 1984. She says Booker believes her mother and sister were cheated out of their dreams: Toy Cook was an aspiring actress and director, living in New York. Poppy Bontemps Booker, who taught third grade, had once hoped to bring arts to culturally deprived children and had wanted to author a children's cookbook. But illness struck before they realized that time was short.
Booker, she says, does not intend to let that happen to her. "Sometimes Anya will say, with a real sense of passion: 'That's why I've got to do this, that's why I've got to write.' She equates being healthy and avoiding disease with living fully," Walker says.
Booker believes her gift for writing was inspired by her grandfather. He was Arna Bontemps, a poet, novelist and writer of short stories during the Harlem Renaissance in the earlier part of the century, who counted himself among writer Langston Hughes' closest friends.
Her grandfather conveyed his love for words to Booker's mother.
"I've always had a very strong sense of literature and storytelling," Booker says. "My mom was an avid reader, which she picked up from her father. She always loved language and words. She would always say to me: 'Tell me a story,' and that's how we entertained each other."
Drug Is Known Peril to Fetus
She thinks her drive to write gives her something to live for, a goal that will somehow insulate her from her medical history.
She also wants to have children. Tamoxifen is a known danger to a developing fetus.