Charity Jokonya was 40 and a single mom when the diagnosis came a little over a year ago: breast cancer.
She read everything she could to better understand the disease. But what she really needed was someone to talk to, someone who understood what it felt like to be an African American with cancer.
“I wanted to know if I was going to make it,” says Jokonya. “I wanted to know if there were people that made it, that I could speak to or hear their stories. I felt that I had come to the end of my road.”
Then she met Bridgette Hempstead.
“Do you remember your advice to me?” Jokonya asked her recently at Hempstead’s South Seattle home.
“Yes,” answered Hempstead. “I remember my advice is don’t give in to the fear, and yes, you will live. We’re all going to die one day, but it won’t be today.”
Hempstead knew that for African Americans, the odds of surviving are lower than for whites. She’s trying to change that by building community support for black cancer patients.
Hempstead understood Jokonya’s fear. She, too, is a single parent. She had been in the same spot in 1996 when she was diagnosed with breast cancer.
At their first meeting at a coffee shop, Hempstead reassured her that she would have all the information she needed to feel empowered. Hempstead also suggested getting a second opinion. For Jokonya, it was a revelation.
“That was really news to me,” she said. “It’s hard to surrender your life to the hands of one man, his decision.”
Jokonya said this practical and emotional support has helped her. It’s inspired her to share her story with other African Americans. “When you do find another black woman talking to you about cancer, you begin to realize that it’s real," she said, "and if they can tell you that they made it, then you can make it, too.”
And there are some things only another black person could understand. For example, chemo or radiation tend to affect black women differently. “Her skin is ashy, and her nail beds are turning black,” says Hempstead, “there’s no way that a white woman can say, oh I have that same experience.”
Soon after her treatment, Hempstead created a support group for African Americans with cancer called Cierra Sisters. She wanted to create a safe place where people could talk, because cancer is seen as a death sentence in the community. Even talking about it is almost taboo.
She once gave a ride to a woman who revealed she had cancer and had both breasts removed. “She said, ‘I feel so ugly, I don’t feel like a woman anymore. I feel like it’s a judgment on me that I had breast cancer.’”
Hempstead says that for many black women, losing their breasts means rejection, losing their partner. “Will anyone ever want to make love to me again? Those are real issues that hit in our community, and they don’t want to talk about that.”
And don’t get her started on churches. “We can’t talk about sex," said Hempstead. “And breasts and vaginas!”
African Americans have higher death rates from cancer compared with whites. There are many reasons behind that disparity. One is lack of emotional support, says Rachel Ceballos, a researcher at Fred Hutch Cancer Center.
“There’s evidence in animal studies and in some human studies now that show social support and perceived psychological stress can impact biomarkers that are related to cancer and cancer progression in particular,” Ceballos said.
In other words, stress makes it harder for the body to heal. Ceballos has teamed up with Hempstead and other groups to develop culturally tailored programs for minority communities. She envisions community advocates helping cancer patients throughout their journey.
“A lot of survivors don’t deal with the emotional aspects of having been diagnosed until after the treatment is done,” Ceballos said, “because you’re in emergency mode — let’s get this done — and then afterward, it’s like, wow, what just happened to me.”
Ceballos says it’s not unusual for survivors to feel a sense of loss or grief after treatment. The body has changed, and it may not be functioning the same way it did before cancer. Having support could help them learn what the new normal is and how to cope with it.
Hempstead’s group, Cierra Sisters, is getting ready to reach out to the African American community, to let folks know they’re here to help and offer support.
“The fear is real, yes,” said Hempstead, “but that doesn’t mean you have to embrace it.” Or face it alone.