In the spring of 2020, life was going well for Kecia Johnson. A 36-year-old Black woman living in Los Angeles, she was a new mom, motivational speaker, nursing student, and owner of a home healthcare business. She did Bikram hot yoga daily, ate a healthy diet, and loved her life.
But in April of that year, Johnson started experiencing rectal pain that was so severe she sought help from her doctor. Her doctor, however, dismissed her concerns as hemorrhoids, even though she’d never had a history of them, and sent her home with over-the-counter medications.
When the over-the-counter medications didn’t work, she tried to see a different doctor, but since the COVID-19 pandemic was causing lockdowns, she could only book telehealth visits and wasn’t able to be examined or diagnosed in person.
Finally in August, Johnson flew with her 1-year-old to Milwaukee, where her mother lived, to seek a doctor. By the time she arrived, the pain was so bad that Johnson was rushed to the emergency room of a local hospital, where she waited for 12 hours before receiving care.
As she suspected, Johnson didn’t have hemorrhoids — she had metastatic stage IV rectal cancer.
Disparities in Colon Cancer Care
While Johnson was waiting to be seen by a doctor, she suspected the delay was due to racial bias. “As Black women, often, we are looked at as being so strong that in moments of pain or sorrow, the act of caring or people being concerned…becomes nonexistent,” she later wrote in her 2021 survivor’s memoir, Cancer Could NEVA: A Motivational Guide to Overcoming Trauma & Illness. “‘Oh she got that!’” Johnson writes. “‘They are strong Black women! They can endure it all!’”
Racial disparities go beyond attitudes toward pain. According to the American Cancer Society (ACS), Black Americans are more likely to develop — and die from — colorectal cancer than other races in the U.S.
This may be because, in part, they tend to be diagnosed at a later stage, when the disease is harder to treat, and may have less access to medical care, including doctors and comprehensive health insurance, says the ACS. Conversely, African Americans seek primary care through a private physician’s office at only two-thirds the rate of whites. When Black Americans are given the same access to treatment as white Americans, their colorectal survival rates are just as successful, according to a December 2021 study published in the JAMA Network Open journal.
Getting the Diagnosis
Johnson was already a resilient person. At 22, she was diagnosed with AIDS (acquired immunodeficiency syndrome), but after taking antiretrovirals she became “undetectable,” meaning there was no measurable virus in her body.
But her resilience was tested again after she developed cancer. By the time Johnson was diagnosed, her cancer had already spread to five spots outside the rectum. The doctors recommended she start treatment right away, so Johnson moved in with her mom during the procedures.
She started receiving chemotherapy five days a week and underwent radiation that was so brutal she wound up hospitalized in the burn unit. During this time in the hospital she wrote her book, “on my iPad, in pain, crying,” she says.
The side effects of her aggressive treatment went beyond burns. When she tried to walk, she fell down. “I had massive nerve damage — my legs were so weak,” Johnson recalls. Her hands were numb, and her hair thinned out so much that she shaved it off. Johnson also experienced stool and urine incontinence, along with deep fatigue.
“I went into a mental slump, a mountain I had to get over — it was really a doozy,” she recalls.
Johnson separated from her husband and lost 111 pounds, and her daughter almost didn’t recognize her. But her friends from afar rallied around, often flying in to visit her.
Eventually, Johnson transferred to the survivorship program at MD Anderson Cancer Center in Houston. An “incredible” team, including neurosurgeons, examined her. “In their assessment, I had been over-radiated and had a bad reaction, which couldn’t be reversed,” she says. She had physical therapy, Reiki therapy, and pelvic floor yoga, “but there was only so much they could do,” she adds.
Returning to a Vibrant Life
Johnson is now back in Los Angeles. As of her last scan, she is “NED,” meaning she shows “no evidence of disease.” Her daughter, Journei-Ahanna, knows that Johnson was sick, and often rubs her knees and legs for her.
In her book, Johnson wrote a letter to her daughter: “It was your kisses and hugs that kept mommi [sic] fighting every day of treatment… It is because of you that life keeps getting better and better!”
Johnson’s lower-limb strength is less than it used to be. “I walk with a cane, some days with a walker — it depends on the day,” she says. She’s covered under Medicare disability, although she still fights to get physical therapy covered. Still, she has maintained her home healthcare business.
The “NEVA” in her book’s title refers to everything she won’t let cancer take away from her: purpose, faith, her role as a mother, focus, body, soul, and her ability to empower others. She’s also connected to Fight Colorectal Cancer, a nonprofit organization that was looking for patient ambassadors to do public speaking and work with people in support groups. She encourages Black people, who have a lower rate of colon cancer screenings, to get screened. The American College of Gastroenterology recommends that screening colonoscopies start at age of 45, but if there are symptoms, a family history, or genetic predisposition for colorectal cancer, screening may need to start sooner.
“I love speaking, empowering other people, it makes me feel good,” says Johnson. “It’s my season of giving back. You can get AIDS, have stage IV cancer, and still live a vibrant life.”
“My life is really amazing,” she says. “I realize I am here for a reason.”