- After Chadwick Boseman's tragic death from colon cancer at age 43, fans and celebrities lauded everything the "Black Panther" actor accomplished in his too-short life.
- Some people with cancer said they found the discourse was rooted in misconceptions about living with the disease, as if it's a sudden acute illness rather than a disability.
- Not everyone can or wants to work through cancer, Walela Nehanda, who has leukemia, told Insider.
- Insider talked to three people who have or have had colon cancer about navigating careers and kids while coping with the disease.
- Visit Insider's homepage for more stories.
When actor Chadwick Boseman died August 28 at the age of 43, after a private four-year battle with colon cancer, fans and celebrities lauded everything he accomplished in his too-short life, including starring in "Black Panther" and the upcoming "Ma Rainey's Black Bottom" all while undergoing surgeries and chemotherapy to treat his disease.
"A true fighter, Chadwick persevered through it all and brought you many of the films you have come to love so much," the tweet announcing his death, which quickly became the most-liked of all-time, said.
But for people who have received similar diagnoses, some of the discourse around his life, death, and career seemed to be rooted in misconceptions about cancer — as if it's a sudden acute illness rather than a disability. That was vocalized on Twitter by Walela Nehanda, a poet and community organizer living with another type of cancer, leukemia.
Many such conversations "have reduced all of his gifts to 'in spite of his cancer,' and that negates that cancer patients have always been able to do wondrous things," they said, adding: "Perhaps what bars people from seeing that is their ableism."
While many people can thrive in their careers while living with cancer, others can't work or choose not to.
"Everyone copes, navigates, and experiences cancer differently," Nehanda said. "We cannot be expected to be Chadwick Bosemans. He was our anomaly. His work was brilliant and his work was extraordinary, but he was also more than his work ethic."
Insider spoke to three people who've had or are living with colon cancer about their experiences balancing a career and the illness. They're all volunteers with the Colon Club, an organization that raises awareness about colorectal cancers in young people.
Rob Vite worked soon after he lost most of his large intestine at 32, but had navigate going to the bathroom 20 times a day
Rob Vite was 32 when he was first diagnosed with stage 2 colorectal cancer. It hit especially hard because his diagnosis fell on what would have been his mother's 53rd birthday had she not passed away from cancer when she was 50.
His wife Jade was pregnant with his second child at the time. Fearing he wouldn't see the birth of his second child, he decided to take an aggressive approach to his treatment plan.
Because Vite also had Lynch Syndrome — a genetic disease that makes people far more susceptible to developing colorectal cancer — he didn't want to risk developing cancer in his large intestine again.
So Vite had most of his large intestine removed, leaving him with only inches of what typically is a 5-foot organ.
"I'm aggressive by nature," Vite told Insider. "So I didn't want to have to deal with this again."
Vite worked for a majority of his recovery, coaching football for Seminole High School and teaching classes. Because he opted to not have an ostomy bag — a bag that can hold stool in the place of a large intestine — Vite initially was having to use the restroom 15 to 20 times a day as he worked.
"For me, going to work was my safe haven. I didn't have to think about colorectal cancer for those few hours," Vite told Insider. "So for me, that was my healing, but everyone heals differently, right?"
While Vite worked through his recovery, he said he is frustrated by the online discourse that seemed to suggest Boseman's ability to work during his treatment should be a benchmark, or even a rule, for all cancer patients.
"We all handle things differently. I'll never judge, but the difference is I have a voice to say that because I walked the walk," Vite said. "It's easy to say what someone shouldn't do or should do but you never did it. It's the same thing when it comes to social injustices."
He added: "If you're not a minority, you don't know how it feels. So just say 'I hear you' and shut up."
Instead, he hopes people remember Boseman's legacy and spread awareness about colorectal cancer — the second leading cause of death in the US.
"Out of respect for him and respect for all the ones we lost, I hope the momentum could keep going and it can, it can bring awareness," Vite said.
Evelyn Keener felt pressured to go back to work during her two-year fight to qualify for disability aid
Evelyn Keener was just eight years old when she had her first brush with colorectal cancer.
After going to the bathroom and seeing nothing but blood, she was terrified and screamed for her mother. Unbeknownst to Keener, her mother had been preparing for that day since the day she was born.
Her doctors had warned her mother from a young age that Keener was at risk for colon cancer because Keener's father has been left with a permanent colostomy — a hole cut in the large intestine through the abdomen for stool to drain from — when he was just 10 years old.
Like her father, Keener has Familial Adenomatous Polyposis (FAP), a rare hereditary disease where precancerous polyps develop in your large intestine. FAP patients essentially have a 100% chance of developing colorectal cancer sometime in their life; it's simply a matter of when.
"As an eight-year-old, things were happening that I didn't understand," Keener said. "I didn't have a voice."
That was the first of many times Keener, now 49, was diagnosed with stage zero colon cancer — in her childhood, in her 20s, and in her 40s. Each time was debilitating; each interfering with every aspect of her life. She would be hospitalized with flare-ups of polyps lining her colon, requiring multiple surgeries. Twice, surgeons constructed an ileostomy (connecting her small intestine to a bag outside of her body), and twice they had to reverse it.
But it wasn't until she was in her 40s, in the best shape of her life, that her life was uprooted, by the disease and by the near-impossible circus of healthcare and disability benefits.
About two months after getting married in 2015, Keener developed debilitating pain in her lower abdomen, and she was diagnosed as ovarian cysts, a condition she'd had before. She wasn't surprised to hear she would need a full hysterectomy.
Despite working part-time at an office, and part-time getting her own business off the ground, Keener scheduled a couple of weeks off, to cover part of the month-long healing period. But it turned into a mountain of complications.
When the doctors went in to remove her uterus, Keener said, the doctors realized her small intestine had fused together — a complication from a previous surgery that had gone unnoticed.
After the surgery, "every day something else was wrong." She was left unable to eat for months, being fed through an IV known as a total parenteral nutrition (TPN). And then came an even bigger battle: finance.
After her medical leave time ran out, Keener had to give up her part-time position and file for disability leave to help support her family and cover medical bills.
She waited for four months — her case still pending, her husband still shouldering all of their finances, with some help from family and friends — before deciding she had to go back to work, whether she was physically ready or not.
"My attorney said if I went back to work the judge would throw out my disability case," Keener told Insider. "You're damned if you do, damned if you don't." To keep her case valid, she could only work under 15 hours a week.
Keener found a position as hostess at a restaurant.
Working through extreme hot flashes, dizziness, fatigue, and being fed through the TPN she kept in a small backpack, Keener kept the job for almost two years until her disability claim was finally approved.
Though her condition has improved, Keener said she and many other cancer survivors like her are rushed to go back to work before they are ready.
Shannon Costello is raising three kids while managing the high likelihood of recurrence
Shannon Costello/The Colon Club
When Shannon Costello visited her then-third-grade son's open house last year, she saw her name listed on his locker. His mom was one of his heroes, it said, because she'd beaten colon cancer.
"That tore my heart apart because I felt like he shouldn't have to say that," Costello, a 34-year-old stay-at-home mom in Monroe, Michigan, told Insider.
But for her sons, now aged three, six, and nine, their mom's experience with cancer and continued monitoring to catch a likely recurrence has been a part of their life.
Pre-coronavirus, they often tagged along to advocacy events and doctor's visits, including her quarterly blood work and oncology visits. In total, Costello's health care team includes about 10 doctors.
She's in awe of Boseman's output while treating the illness. "I have no idea how this wonderful person dealt with that through filming movies, through visiting children, through putting so much positivity into the world," she said.
Costello was diagnosed with stage 2 colon cancer five years ago at age 29. The diagnoses "blindsided" her and her husband, who were days away from a vacation to celebrate her fifth wedding anniversary.
But today Costello, whose mom had colon cancer at age 44 and uncle died from the disease, considers herself lucky: She underwent surgery, but not chemotherapy or radiation, to treat the illness and is now cancer free. During her care, she learned she has Lynch Syndrome — the same condition Rob Vite has. Her kids have a 60% chance of inheriting the condition.
"My goal is to keep them educated and keep them on top of it, so in the event that something does happen, they can take care of themselves in the best way possible."
Boseman's death sent "shockwaves" through the colorectal cancer community, Costello said.
"A lot of us deal with survivor's guilt," she said. "Why did this person pass away when they've contributed so much more than I have? Why does this person have such a harder time with this than I have? Why am I here and they're not? Why did they have to go through that and I'm not?"
She hopes the tragedy will lead to more awareness around the fact that the disease doesn't only affect old people.
"Knowing symptoms are important, screenings are important, but the most important thing is to realize that it can really happen at any age," she said, "and people shouldn't be dismissed just because of how 'young' they are."
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