If you’re a runner in Charlotte, you may know Judy Caswell or have heard her story. It’s a great one! She picked up running as an adult and started challenging her college-aged sons to run marathons with her, and wagering on who’d finish first. Lesson: never bet against a mom.
Sounds like a woman in perfect health for her mid-50’s, right? Yeah, that’s what she thought, too.
Except the stomach problems. They were a pain. Just training hard, right? Comes with the territory, she figured. She had all of the classic symptoms – bleeding, abdominal pain, cramping – but they were manageable. Or so she thought, for too long. After four years, they were no longer manageable, so she started googling her symptoms. She finally went to the doctor and made an appointment with a gastroenterologist.
In May 2016, Judy was diagnosed with Stage 3 colorectal cancer. She was floored! She had never heard of it. She ate a healthy diet and exercised often, training for marathons and trail races. How does someone like her have this problem?
“I didn’t realize how common it was, and how many people I knew that had it,” says Caswell. “It’s not a cancer people are open about because of the part of the body we’re talking about.” True. No one really likes to talk about something wrong with their butt, right?
Caswell did more than talk about it. She and her treatment team went after her cancer aggressively. She shared her story with us for Colorectal Cancer Awareness Month, which is a good time to talk about that body part no one likes to talk about.
“I went through the whole process pretty easily,” she recalls, noting that doctors were aware of her marathon training, and figured she was not one to sit idle during recovery.
She had a pelvic resection with ileostomy in September 2016 using the “ERAS” method — Enhanced Recovery After Surgery – so she didn’t take pain meds afterwards. She felt fine and was up and walking around the hospital – 3 miles! – the same day. She went home a day later. After 4 weeks of recovery, she was out running again with her specially-fitted ileostomy bag in tow.
Caswell progressed through chemotherapy and had her resection reversed in April 2017. After another 4 weeks of waiting (and skipping that marathon she had signed up for!) she was back to running again. She learned to be more aware of what she ate – both content and timing – but she hasn’t slowed down. Pre-pandemic, she was running the best times of her life! Now she turns her attention to others who are going through what she did.
“I have met more and more people on this journey – especially younger people — who are getting colorectal cancer,” says Caswell. “Traditional therapies aren’t effective with younger people, who also are getting more aggressive cancers.” In her work with the Congress for Colorectal Cancer, she’s learned this kind of cancer is expected to be the #1 killer of people aged 20-49 by 2030.
“Education and access are important,” she reminds us. She’s working on that through the Cancer Action Network, too, to provide better health equity and support.
Sadly, Philip Sanford’s mother didn’t have Caswell’s success. Mary Kay Sanford was just 42 when she was diagnosed with her cancer, during Philip’s senior year in high school.
“We were all shocked. Nobody had any idea what it meant. We had no real idea what it was, what its side effects were, what the severity was, or the next steps to take,” says Sanford. “It was a complete mystery to all of us.”
A PR & Media professional, Mary Kay spent the next 6 years using her skills for patient advocacy and clinical trials while fighting cancer with everything she had. She succumbed to it in 2006 at the age of 48. Sanford was just 22.
Sanford, a runner “since kindergarten,” kept running, but it was a few years before he learned of an opportunity to use his running to benefit a cause so close to his family. The “Get Your Rear In Gear” run was a perfect way for him to use his talents to raise awareness and support for colorectal cancer. He joined the GYRIG Committee in 2016 and became the event director for Charlotte in 2018. The race supports local patients, survivors, and caregivers through community grants.
“It’s important to make as many people aware of colorectal cancers as possible,” he says. Mainly, he wants to let people his age know that a colonoscopy is not a big deal, and patients who are diagnosed with these cancers are not alone. “We’re breaking through barriers to let people know this is serious, and with small steps you can stay healthy if diagnosed early enough.”
One of the big hurdles of colorectal cancer, like Caswell says, is getting people to talk about it.
“It’s such a taboo subject,” says Sanford. “People make a lot of jokes about colonoscopies, but it’s just a matter of making it part of normal conversations, and normal medical conversations.” Now that the demographics of the cancer patients are skewing younger, it’s more important than ever to have the conversations, says Sanford.
“It takes time to break that mindset,” he says. Seeing celebrities like Katie Couric and Al Roker advocate colon screenings is a big help, too. He also proudly sports a “✓ ur : ” T-shirt on his Instagram page.
The other big obstacle is getting patients the screening tests they need. Most insurance plans don’t cover colonoscopies until you’re 50, but a lot of people are being diagnosed before then – and have to pay out of pocket for tests. Both Sanford and Caswell are advocating to change that, along with groups like Fight CRC.
“At Fight CRC, their primary mission is government advocacy and insurance to cover colonoscopy at a younger age (45), or non-invasive blood or fecal tests to find potential disease or that coverage of your colonoscopy should be included as a separate and necessary screening,” says Sanford. “We are trying to let people know about the resources available to them if they get referrals.”
The Colon Cancer Coalition of Charlotte teams up with Novant Health and other providers to pay for screenings for those who need them. They raise money for grants and support with their Get Your Rear In Gear race, which is coming up on March 26, 2022.
The goal is always, “to do better than last year,” says Philip, which means raising more than $127,000. The pandemic ate into their annual fundraiser in 2020, but he’s confident Charlotte can return to pre-pandemic levels of fundraising.
In addition to screenings, the money raised provides grants for Wind River Cancer Wellness Retreats, to help with patient, survivor, and family support. A young survivors group has also been established and has been well-received.
Sanford is leading up the race, and has his own team. So does Caswell. They’re hopeful for more than 2,000 participants showing up for this year’s event.
“I’m really excited,” says Sanford. “We’re back to being our full event, and we have a new course this year. Come join us!”
To learn more or support CRC, find more here: https://donate.coloncancercoalition.org/charlotte