From Cancer Patient to Patient Advocate: Kenn Sheats’ Story

Kenn Sheats is a familiar face to many at St. Joe’s Ann Arbor – his silver hair, rosy cheeks and brow line glasses make him easily recognizable from across the corridor. He often gets stopped by colleagues who want to say hi to him.

It’s probably a good thing Kenn is so friendly. As a patient access training coordinator for the hospital, he teaches new hires how to welcome and register patients.

Kenn’s friendliness is not a façade, though. It comes from an empathy he acquired during his own journey as a patient over the last two years.

When Kenn began to experience digestive difficulties and acid reflux in the winter of 2014, he brushed it off as aging. When his family doctor advised him to get a colonoscopy, he put it off.

Months passed. It wasn’t until Kenn read St. Joe’s Health Reporter Lila Lazarus’ candid blog post – in which she shared about a friend who died of colon cancer – that he felt compelled to go in for his screening. It was June 2015, and Kenn had inexplicably lost about 25 pounds, and was losing about four pounds a week.

The news came quickly after the colonoscopy, and it wasn’t good. Kenn was diagnosed with a rare form of non-Hodgkin lymphoma called mantle cell lymphoma, which attacks the digestive system. According to the Lymphoma Research Foundation, mantle cell lymphoma comprises about five percent of all NHLs, and is usually diagnosed as a late-stage disease.

Kenn’s was stage 4. By then, he was down about 70 pounds.

While he was coming to grips with the news, Kenn was referred to St. Joe’s cancer research program. After an initial consultation with Dr. Tareq Al Baghdadi, Kenn was identified as a potentially good candidate for a clinical trial.

He took a medical leave of absence from work, revealing little to his coworkers, fearful of the future.

“I felt like I was slowly moving toward death. I never expected to return to St. Joe’s,” Kenn said.

The trial involved six rounds of chemotherapy and a combination of bendamustine and rituximab. Kenn was told initial research showed this treatment was successful in managing the cancer, with far fewer side effects than the most common treatment. Still, there was a lot of uncertainty.

“I was looking for a guarantee. I wanted it gone, I wanted it out of my life,” Kenn said.

But Kenn reasoned that even if the trial didn’t work for him, his participation could help the next person.

“Being part of this trial will at least help those developing solutions,” Kenn said he told himself, as he resolved to face his illness head-on.

Treatment began in July 2015. Much to his surprise, Kenn responded well almost immediately. His doctor had warned about nausea and hair loss, but Kenn experienced neither. Instead, he slowly began to gain weight again. His energy returned. After 10 weeks, he felt well enough to come back to St. Joe’s, determined to work full-time through the duration of the trial.

After his last round of chemo in November 2015, Kenn transitioned into a maintenance treatment plan – one drug for every eight weeks. By the following November, however,  symptoms returned, and Kenn was pulled off the trial.

Kenn is now taking an oral chemotherapy drug once a day and, so far, it is managing the cancer well.

“The initial successful outcome of the clinical trial gave me the hope I needed to emotionally and physically take on this cancer journey,” Kenn said.

Living with cancer hasn’t deflated Kenn’s spirit. Far from it. Kenn said he now has a renewed passion for using his story to teach his trainees how to treat St. Joe’s patients with dignity.

“I put a lot of focus on what it really means to be remarkable,” Kenn said. “Because they’re that first point of contact with the patient. My passion is, how do I make it better for the next patient?”

As a patient himself, Kenn said, he learned the best thing caregivers can do is to ensure people don’t feel alone in their journey – whether during initial consultation, diagnosis or treatment. He touted his clinical trial team, Dr. Al Baghdadi, the infusion center staff, and his research nurse, Evon Buckley, for being as invested in his fight as he was.

“I never felt like I was a bother. I was never made to feel insignificant, I was never just another patient,” Kenn said.

Kenn now serves on the patient advisory board, offering valuable perspective and feedback on St. Joe’s oncology services and programming.

“Cancer is an overwhelming experience emotionally. We need people that are there for that patient,” Kenn said.

Kenn also credits his family and partner, David, for walking this journey with him. It is frustrating, he admits, when work consumes much of his energy during the week, forcing him to rest on the weekends. A self-proclaimed doer, he can always find things around the house that need attention. But living with cancer has taught Kenn “not to sweat the small stuff,” and to celebrate the big things instead.

He triumphantly shared with his friends on Facebook last week:

“I had a follow up appointment with the oncologist today.. all systems are GO! Blood counts look perfect. Feeling good, feeling sassy, lovin’ life! I don’t see the doctor again for 10 weeks!”