UNC Health Talk

Don and Cindy Sills: Fighting Disease, Raising Awareness

Media contact: Tom Hughes, (919) 966-6047, tahughes@unch.unc.edu

Wednesday, March 20, 2013

Written by Elizabeth Swaringen for UNC Health Care

CHAPEL HILL, N.C. – Cindy Sills refuses to shed a tear for herself or the rare cancer she’s fighting.

“I’ve never shed a tear for this, and I won’t shed a tear,” said Cindy, 56, of Havelock, N.C. in Craven County. “This is a battle I have to win. God put me here for a reason: to raise awareness about sarcoma.”

The strong-willed, ever-positive mother of three and grandmother of five — two of whom were born since January — had already courted death once before with a ruptured esophagus nine years ago.

“If I wasn’t a strong person, I’d already be dead,” said this sprite of a woman who always wears something purple. “Remember, your attitude is 99 percent of everything.”

On July 23, her 35th wedding anniversary, Cindy was diagnosed with alveolar rhabdomyosarcoma, a cancerous tumor of the muscles that are attached to bones. Of unknown cause, it can occur many places in the body, most commonly in the head and neck, the urogenital tract, and the arms and legs. It is the most common soft tissue tumor in children, but it is extremely rare in adults.

“On a day that was our day, cancer invaded,” said Don, 55, who has known Cindy since they were both 12 years old. ‘We knew it was bad, but not how bad.”

“Hers is a very unusual and complicated situation,” said Joel E. Tepper, MD, Hector MacLean Distinguished Professor of Cancer Research in the Department of Radiation Oncology at the UNC School of Medicine, a member of UNC Lineberger Comprehensive Cancer Center and lead radiologist on Cindy’s health care team.

“This cancer is not common in adults, and the alveolar subtype is extremely rare,” Dr. Tepper said. “Also, Cindy presented with metastatic disease from an unusual tumor in her lower left leg. Because of its spread, the radiation field goes from her toes to her pelvis. That’s a huge expanse that has produced some technical challenges, but not insurmountable ones.”

Cindy’s treatment follows a pediatric protocol because there is no adult treatment protocol, Dr. Tepper said. “In children, alveolar rhabdomyosarcoma is well known and has been formally studied. Cindy is far from a textbook case, but she nicely illustrates how being a good physician is about understanding the disease process and modifying the treatment for individual patient needs.”

In coordination with a medical oncology team led by Juneko Grilley-Olson, MD, Cindy received chemotherapy and five weeks of radiation at the NC Cancer Hospital. Additional chemotherapy was coordinated with Cindy’s community hospital in New Bern, an outreach that’s appreciated and respected by patient and physicians alike.

“It’s been the best of care, here and there,” said Cindy. “The worst part is that my butt hurts because there’s no padding. I’ve lost over 50 pounds since the diagnosis. The silver lining is I get warm sheets and blankets with my treatment.”

And it’s clear that kind of attitude is helping Cindy, Don and her health care team, said Dr. Tepper.

“Attitude is important,” Dr. Tepper said. “If you come in with a negative attitude, you lose the incentive to do the things you need to do to make it through treatment. I don’t know if it cures the cancer any better, but a positive attitude gets you through treatment easier. Cindy’s doing great, and she is easy to work with because of her attitude.”

While in Chapel Hill, Cindy and Don stayed at SECU Family House, the 40-bedroom hospital hospitality house minutes from UNC Hospitals that provides comfortable, convenient and affordable housing for seriously ill adult patients and their family member caregivers.

“Family House has been a saving grace for us,” said Cindy. “It’s a comfort and healing for both of us. We’re able to talk and pray with others who are going through similar situations. It’s like we have a new family. And I like the idea of volunteers fixing dinner.”

As for the sarcoma awareness raising it’s gone hand-in-hand with Cindy and Don’s daily routines since July 23.

Don, a retired US Marine Corps master sergeant (MSgt.) who works a civilian logistics job at the Marine Corps Air Station at Cherry Point, immediately set to work searching online for any information he and Cindy could read about sarcoma in preparation for her treatment.

He also consulted the Patient and Family Resource Center at the NC Cancer Hospital where sarcoma information was still scarce, but where Tina Shaban, center director, followed up with other helpful advice.

“People are not just a disease,” Shaban said. “Our job is to work with patients and their families as individuals with unique needs and talk through what it is they need most. It’s about helping to identify gaps in what’s missing whether it’s information, support or care so they have a good understanding about what they are facing. While cancer is never easy, knowing what to expect helps.”

“We didn’t find a lot of information about sarcoma and what we did find wasn’t good news,” said Don. “We knew immediately we had to use Cindy’s fight to raise awareness. It desperately needs to be out there in the public eye which will help funding for research, treatment and ultimately a cure.”

Don set up a Facebook site called Cindy’s Rainbow for tracking their journey. It also includes poems he’s written for and about Cindy, which she said, “I could hear a 1,000 times.” The site now has 300 members and is growing.

Through the Sarcoma Foundation of America website, Cindy and Don connected with Landon Cooper, an ultra runner who established Miles 2 Give, a 3,000-mile race across the U.S. for sarcoma cancer research awareness.

The race began Feb. 14 in San Francisco and will conclude July 4 in Washington, D.C. Runners cover 21 miles a day, and each day is dedicated to someone on the sarcoma journey – a patient, family member, friend or a loved one lost to the disease. Cindy’s day is June 3.

But for Don, every day is Cindy’s day.

“She is an amazing woman, and I can’t not be by her side,” said Don, about his best friend for life. “I’ve made arrangements at work so I can be with her in Chapel Hill. I’d trade places with her if I could.

“With the sequestration fall-out, I’m facing a furlough. But we’ll do OK. All that pales in the face of Cindy’s disease. We just want to survive sarcoma now.”