Shannon Ivey was 42 and a single mom of a first grader when she was diagnosed with Stage 3 rectal cancer.
Like many patients, she’d had symptoms for months but never suspected they could be caused by a tumor in her digestive system.
There was the “mystery blood” that looked like spotting on her underwear, but since women in her family go into perimenopause early, she assumed it was the start of an irregular cycle.
“This whole time, I thought it was some weird menopausal thing,” Ivey, who lives in Columbia, South Carolina, tells TODAY.com. “I never connected it to a bowel movement.”
Then, there were the pencil-thin stools and the urge to go to the bathroom with nothing coming out. But Ivey thought the problems were related to her lifelong gut issues, which also run in her family.
She bought a toilet stool thinking perhaps she needed to position her body differently to encourage a bowel movement. And she ate more fiber.
But the warning sign that finally had her “complete attention” was dramatic unexplained weight loss.
Ivey lost 26 pounds from her 5-foot-4-inch frame over about six months. As someone who doesn’t own a scale and wears stretchy pants, she had no idea until her son’s school bus driver made a comment that sent Ivey to weigh herself at her gym.
“I knew that I was very sick when I saw that number,” she recalls.
Divorced with a 7-year-old child, she was her own caregiver navigating the health system as a single mom and felt terrified, Ivey writes in her new book, “Welcome to the Sh*t Show: A Memoir of Colorectal Cancer and the Power of Self-Advocacy.”
Rectal Cancer Rates Are Rising
Rectal cancer is on the rise, now making up almost one‑third, or 32%, of all colorectal cancer cases, the American Cancer Society reported on March 2. That’s up from 27% in the mid‐2000s.
Rectal cancer starts in the rectum, the last six inches of the digestive system where stool is stored until it passes through the anus.
“While we don’t know the drivers” of the increase in rectal cancer, Dr. Arif Kamal, chief patient officer for the American Cancer Society, told NBC News, “it does emphasize the importance of knowing your body and reporting symptoms to your doctor early.”
Symptoms include rectal bleeding, bright red or very dark blood in the stool, a change in bowel habits — either constipation or diarrhea, narrow stools and a feeling the bowel doesn’t empty completely, according to the National Cancer Institute.
Colorectal cancer, which encompasses colon and rectal cancer, is now the No. 1 cause of cancer-related mortality in people under 50 and the second leading cause of cancer-related deaths for people of all ages, the American Cancer Society notes.
“The untimely death of James Van Der Beek and also our beloved Catherine O'Hara — all of a sudden, it's like the universe says everyone needs to pay attention to this,” Ivey says.
"Take Yourself to the Doctor"
Ivey underwent 28 radiation treatments to the tumor and oral chemotherapy. She then had surgery to remove the tumor and a second set of chemotherapy treatments.
Trying to stay alive became a full-time job in addition to her actual job, she writes in her book. She kept worrying about her young son.
“I was so afraid to leave him motherless,” Ivey says. “He really managed it as well as any 7-year-old could. Mostly I would say it was just really, really scary. And it felt super, super sad to think of leaving him.”
They talked about the boy living with his dad full-time if her health deteriorated.
She lost even more weight during treatment because it was difficult to eat, going from a size 10-12 to 2-4. She made a will and asked an artist friend to turn her ashes into marbles if she died and was cremated.
There were some unintentionally light moments as well, like when her curious son cautiously asked her after her surgery: “Do you have a butthole?” Yes, she told him, she still had it.
As a single woman, Ivey wishes the health care system didn’t assume everybody has a partner or a mom who will fly in and help. Ivey relied on friends to accompany her to procedures, but she was often alone for other medical appointments.
One early obstacle was the requirement to have a friend or family member drive her home after a colonoscopy since the sedative can take a while to wear off.
“If I had all the money in the world, I would drive people to their colonoscopies and back,” Ivey notes.
Almost 10 years after her diagnosis and treatment, Ivey is now 51 and says she’s doing great. Monitoring continues to show no evidence of disease.
She urges people to pay attention to symptoms and changes in their body, and to keep pressing for answers.
“You know your body best, but you're also the only person that can take yourself to the doctor. Your spouse can't make you go, your friend can't, your mom can't — only you,” Ivey says.
“In the end, you have to believe that being alive is worth it, worth it enough to be uncomfortable in advocating for what you need from the medical system.”
