Todd Spurrier was only 12 years old when his dad died of colorectal cancer. A diagnosis of familial adenomatous polyposis (FAP), a rare genetic condition characterized by precancerous polyps and eventual cancer, meant that Spurrier and his siblings were at a high risk for the devastating disease too. Sure enough, a round of tests a few years later revealed that Spurrier had hundreds of polyps lining his colon.
A week after graduating from high school, he had a total colectomy, as did both of his younger sisters. The threat of cancer is literally in his family’s genes and though FAP symptoms often show up in the teens, Spurrier’s niece and nephew also developed thousands of polyps by the ages of 11 and 13.
In 2012, Spurrier, who calls himself a “previvor,” felt compelled to spread the word about FAP and colorectal cancer, which has a reputation as a disease that only strikes older people. Today, unless there’s a family history, doctors recommend a first colonoscopy or at home test around age 50. “My dad was only 32 when he died from colon cancer via FAP,” he says. “He had all the signs of colon cancer in his mid-20s — bloody stools, loose stools, cramps, diarrhea — but kept putting it off because he didn’t want to take off work. He was so young. Cancer didn’t even cross my parents’ minds.”
When he started to spread the word about FAP, Spurrier was still in recovery mode. Five years earlier, after he’d blown off one of his biannual checkups, his sister and mom insisted he get a flexible sigmoidoscope and endoscope. Doctors found a series of large polyps, one being more than a centimeter long, in the few inches of rectal stump that still remained following his earlier colectomy. Spurrier didn’t have health insurance, but because his father was a Native American who’d been born on the Menominee Indian Reservation, he was a first descendant and could get coverage through the tribe.
During his second operation, a j-pouch procedure, surgeons discovered he also had a desmoid tumor, a soft tissue sarcoma that affects connective tissue. Because of the location of the tumor, the procedure could not be performed. The surgeons closed Todd back up. A plan was then created, which included bringing a gastroenterologist, oncologist, and urologist onboard to treat and monitor what the surgeon referred to as a “hornet’s nest” inside of him. For the time being, Spurrier has dodged having a permanent ileostomy, but down the road, he will likely require one, as his rectum will probably need to be fully removed because of the ongoing polyp growth.
“This entire experience and the thought of the future was daunting. After that, getting back into life, I was pretty depressed with things and didn’t know what the hell I was going to do,” he says. “Then I had the idea of doing a ride. Something to move me forward and give me a sense of purpose.”
By ride, he means crisscrossing the country on a motorcycle, and not just any motorcycle but a Ducati — one of the sleekest, most powerful rides on the planet. After creating an extensive website for his Destination X Ride, he was serendipitously connected with the Italian motorcycle company, which provided him with a bike to use for his ride.
“My dad opened me up to the outdoors,” he says. “We’d go camping and fishing. It’s one thing I’m really thankful for. Those memories of being on the river with him, watching him fish.”
For his ride, Spurrier also reached out to a number of different cause groups. One organization was Reel Recovery, a nonprofit that promotes the healing powers of fly fishing by organizing 3-day fly fishing trips across the United States for male cancer survivors. That brought him to scenic Idaho, where he met with other survivors from all backgrounds.
In 2013, he ventured back out on the road, partnering with colorectal cancer organizations such as the Colorectal Cancer Alliance, Chris4Life, and the Colon Cancer Coalition. Spurrier also created a new website for the ride geared toward colorectal cancer, FAP, and desmoid tumor awareness. The website also covers his motorcycle adventures.
Tapping into his photography background, he also decided to photograph and get stories from people who were diagnosed with colorectal cancer under the age of 50. He nicknamed his Faces Under 50 project “FU50.” “It also serves as an FU to 50. The age needs to be reduced. Period,” says Spurrier. “That’s the established age of getting a colonoscopy. These days colon cancer rates below the age of 50 are rising and rates above 50 are declining.” After seeing all the younger faces in the FU50 project, it will become very apparent that colorectal cancer is not just a grandfather’s disease.
“It’s about trying to spread awareness about that,” he adds. “Don’t be my dad. He didn’t think it would happen to him. I’ve met people that were told it was IBS, hemorrhoids, stress, or diet, only to be diagnosed with full-blown cancer two or three years later. Doctors are getting better with acknowledging that colorectal cancer does occur in younger patients. But people need to get themselves checked out if something feels off. They have to be their own best advocates.”
For another project, Destination X Tribe, he shares the stories of his fellow FAP and desmoid tumor patients, including moving portraits of his subjects and interviews that tell their experiences in their own words. “I’m a one-man show,” he says. “And all these people give so much to me. It’s intimate the way they allow me into their worlds.” Some have passed away while many others fight on. “I carry a piece of each survivor in my heart on every mile. They are my fuel,” he says.
During his first series of rides, Spurrier logged an incredible 53,000 miles. “Being on the road is unbelievably freeing. It’s like the feeling of distraction and clarity at the same time. I’m just immersed. It’s me being surrounded by elements and the feeling of the air and being free and not confined. After riding a hospital bed, it felt like whatever happens on the road, I’d rather end up in a ditch than be back there!”
The Next Ride
Now 52, he’s hitting the road again soon, despite gastrointestinal and kidney issues (and yes, he says with a laugh, feeling the years a little more than he did the last time he rode). He plans to continue his colorectal cancer under 50 advocacy and spread awareness about FAP and desmoid tumors, which are so rare that they do not receive widespread attention.
“Losing my dad so early and learning I had FAP messed with my head,” he explains. “I didn’t think longevity was in my future and lived my life accordingly. I lived for the moment a lot of the time.”
Riding a Ducati, the wind in his face and the sights blurring by, reminds him just how here he still is, while being on the road — the longer and harder, the better — lets him focus on his next destination and the stories of the survivors he’ll meet there. “I feel most alive when I’m kicking my own ass,” he says.
Todd is currently on the fast track to organizing his cross-country Destination X Ride, which will commence sometime in June 2019. If you’re a colorectal cancer survivor, FAP or desmoid tumor patient and interested in being photographed and submitting your story, email him at firstname.lastname@example.org.
Are you or someone you care for living with colorectal cancer, colorectal polyps, or another health condition? Sign up to share your experiences with others.
- Share Your COPD Story
- Cancer Club: How Virginia TV Personality Jane Gardner Has Coped With Multiple Cancers
- “Newborn Screening Saved My Child’s Life”
- Dermato-what? Adjusting to Life with a Rare Disease
- What would you like to share about your health story?