Stories of Hope
Three-Time Cancer Survivor Works to End Disparity
Article date: May 14, 2002
This is your body! Know your body. Listen to your body.
Teaching and Empowering Women is Her Latest Mission
Gwendolyn Collins' email address is a fitting description of her: Revdrmom@… — reverend, doctor, and mother.
A licensed ordained minister for more than 20 years, she's also a mother of seven and a "grandmother of three — almost four — one's due in June." She's been a teacher, a nurse, and a journalist. And she's a three-time cancer survivor of three different cancers.
The challenges Collins has faced — and continues to face every day — would daunt most people. "I've had three bouts with cancer: cervical, ovarian, and breast." She also has fibromyalgia and sarcoidosis.
Fibromyalgia is a group of disorders that cause pain and stiffness is muscles, tendons (these attach muscle to bone) and ligaments (these attach bone to bone). Sarcoidosis is a disease in which large amounts of infection-fighting cells collect in different parts of the body. This can keep organs from working as they should. The lungs are the most commonly affected. Collins has sarcoidosis in her lungs.
Though cancer-free for 10 years, she's in a clinical trial to see if low-dose chemotherapy will treat sarcoidosis. Between the chemo, the sarcoidosis, and the fibromyalgia, she suffers from debilitating pain and fatigue. The pain is "excruciating…It's so intense I can't describe it. It is very difficult to live with because it stops me cold," she said.
To cope, she said, she meditates, prays, and reads scripture. "I've been on a dozen different meds and nothing controls the pain," she said.
Collins takes the interruptions in stride. After all, throughout her life she's had to stop to raise children, move with her former husband's military career, and care for her parents. "There have been periods of time where I've had to put things on hold but I never closed a door," she said.
A volunteer coordinator for the American Cancer Society's (ACS) Tell A Friend program, she's "been active in the Society in different parts of the country over 20 years because cancer is rampant in my family," she said.
She said even as a child she was aware that people of color were treated differently by doctors. "There was great disparity in the care that my family members (received)," she said. "As I got older I started to ask questions and investigate.
"There was a great deal of racial disparity in the health care process. It saddened me and it made me angry," she said.
Collins said she asked herself, "What's wrong? Wait a minute. We got all these medical advances, and we have all this money for research, why we goin' backwards? What's the matter, what is wrong here?"
"I wanted the medical profession to admit that they were doing this… I wanted people of color all people of all colors to say, wait a minute, we deserve better."
And so seven years ago, Collins founded the Women of Color Breast Health Initiative and the Ovarian Cancer Network at Carney Hospital in Dorchester, Mass. She's the executive director.
"Both are community-based educational outreach programs," she said. "We are all volunteers — the staff is all-volunteer and we are all cancer survivors (various types). Family members, friends, and interested others make up the rest of the staff."
"We work to educate, inspire, and inform the public about these and other cancers," she said. "We target women of color. We offer workshops, conferences, and support groups.
"We also offer in-home info and counseling sessions for those women who feel too intimidated to attend a support group meeting," she said. The ACS supplies materials used in these two programs.
The program stresses empowerment, she said. "This is your body! Know your body...listen to your body....demand proper medical care, tests, etc. Give and expect to receive respect from all medical personnel," she said.
"I've had doctors and nurses say to me 'your disease,' and I've corrected them, 'excuse me? This not my disease. I did not invite cancer into my body, once it came I did not say, take a seat, you're welcome. No, uh-uh. Not my disease,'" she said. "The disease, not mine."
"Sickness and disease are evil demons to me, " said Collins. "If we come together, we can…make them go away!"