This is the last in a four-part series that details Gary and Thelissa Zollinger’s cancer journey – fighting the disease, advocating for the right care and coming to the realization that regardless of outcome, they would work to make a difference for others like Gary. In December 2006, the couple established an endowment to fund research on early detection of lung cancer. The Gift of Life and Breath 5k Run/Walk would start the ball rolling. This May commemorates the 10th year of the race, and it seems a fitting time to detail the Zollingers’ personal race with cancer – sometimes a sprint, other times a marathon, always an education in medicine and the human spirit. (Click here for Parts I, II and III.)
By Kelly Pate Dwyer
There’s good reason a scant few lung cancer patients get lung transplants.
“Lung transplant was never developed as a therapeutic option for people with lung cancer,” says transplant pulmonologist and consultant Dr. David Weill. “You could never be sure that by replacing a lung you’re getting rid of the cancer, that it isn’t hiding elsewhere. And anyone immunosuppressed after a transplant is at a higher risk for developing cancer.”
That said, Dr. Weill has been involved in nearly half the estimated 35-40 lung transplants ever performed in cancer patients, specifically patients with a rare form of non-small cell cancer known as bronchioloalveolar carcinoma, or BAC. Unlike most lung cancers, which can spread to the liver, brain or bones, BAC typically remains contained in the lungs, making transplant a viable option.
Dr. Weill began transplanting BAC patients at the University of Alabama in the 1990s. Most were women, some in their 30s. “We saw that BAC tended to affect people who were younger, non-smokers,” he says. “That’s what pushed us to want to do the transplants. You want to take more risk with people who are so young. At least I do.”
The chief risk is disease recurrence, high among BAC transplant patients. What varies from one transplant surgeon to another is whether they believe the benefit is worth the risk. The five-year survival rate for transplanted BAC patients is 50 percent or greater. Among the Alabama cohort, it’s 75 percent, Dr. Weill says.
“A guy we transplanted in Ft. Worth is nine years out,” he adds.
Like others with BAC, Gary Zollinger was a non-smoker and relatively young, 57, when diagnosed at stage IV of his cancer. He’d had a cough for the previous five months, during which time doctors had suspected infection or allergies. Eventually, a CT scan pointed toward cancer.
A year into the fight, Gary and his wife Thelissa recognized he had few options remaining besides chemotherapy – which offered little hope of remission – or transplantation. They favored transplantation. And they would battle to make it happen.
The couple met Dr. Weill in 2005, after he joined the University of Colorado Hospital transplant team. Dr. Weill believed Gary was a good candidate for a double lung transplant. And the Zollingers reaffirmed their resolve after learning more about the procedure. (Dr. Weill later led the heart-lung transplant program at Stanford University before launching a consulting practice in 2016. He advises several transplant programs across the country.)
Gary endured nine medical tests and Thelissa engaged in a two-week battle with their health insurance company before Gary was approved for transplant in May 2005. Then they waited the longest year of their lives for the special call that came on May 19, 2006, Thelissa’s 55th birthday. The couple was engrossed in a backyard landscaping project when the phone rang.
That same night, Dr. Weill’s colleague, Dr. Michael Weyant, performed the 11-hour surgery – an undertaking with high stakes and a few common but challenging complications. Thankfully, Gary’s body accepted the new lungs, and within three days he was walking around the hospital, breathing with someone else’s cancer-free lungs.
That fresh chance at life inspired Gary to give back, in a big way. A specific way. The Zollingers would raise money for research dedicated to the early detection of lung cancer. They decided they would hold a race the following May to raise awareness about lung cancer – its prevalence, myriad causes and relative lack of research dollars. After all, Thelissa thought, other cancers have their races, why not lung cancer, too?
But Gary wouldn’t wait that long to get the money flowing. He wanted to start immediately by donating an amount nearly equivalent to his annual salary. Thelissa tried to talk him down to a practical number. After all, Gary’s employer had been bought out, and he had decided not to pursue further employment with the new company. Though he would receive a handsome severance package, his health insurance would be short-lived. Such a prospect was even more terrifying before protections built into the 2010 Affordable Care Act.
Gary was adamant about making a statement. “He said, ‘I want to give enough that they (CU researchers) know I’m serious.’ And I don’t mean he wanted the accolades. He wanted something to be done,” Thelissa says. Recognizing her husband’s determination and knowing that medical research dollars don’t stretch far, she relented on the size of the donation.
While still recovering from surgery, the couple met with the director of the University of Colorado Foundation in Gary’s hospital room, taking the first step toward setting up an endowment fund.
Gary remained in the hospital 17 days before going home mid-June – only to return days later for another procedure to repair a wound separation.
But by July, after two years of treatments, tests, drugs, pain, hard decisions and lots of waiting, Gary was feeling more like himself than he had in a long time. A bronchoscopy and CT scan both came up negative for lung rejection and cancer growth.
As a precaution, Gary started on a drug that inhibits cancer growth. But he no longer needed oxygen, and he felt strong enough to walk with Thelissa every morning. The couple even made a trip to the top of Mt. Evans, into the lung-stressing thin air of a 14,000-foot mountain. Gary had rebounded.
“It was incredible to see him whole again,” Thelissa says. “I relished every moment of that.”
They were inclined to believe the worst was behind them, she says. “The fact he got the transplant at all was so remote. You think, we’ve made it this far, who’s to say he doesn’t have 15, 20 years?”
The buyout of Gary’s current employer wrapped up that summer and his job ended. In spite of their uncertain circumstances, the couple spent the coming months in rebuilding mode, grateful for Gary’s second chance and funneling their energy into the endowment fund.
On December 14, 2006, the couple signed paperwork launching the Gary L. and Thelissa Zollinger Endowment for the Early Detection of Lung Cancer, along with CU Foundation President Wayne Hutchens and several other doctors. Dr. Weyant, by then a friend of the Zollingers, was named the fund administrator.
This was a high point for Gary, aiming toward making a positive difference in the lives of others. But it was also a turning point. Before Christmas, he began experiencing shortness of breath and fatigue, which grew progressively worse through January. His feet swelled and blood clots formed in his arm as well as his lungs.
Had the BAC returned? Was his body rejecting the lungs? While doctors investigated his symptoms, there was a surprise additional diagnosis: Gary had squamous cell skin cancer on his face. Then Thelissa noticed, as she had before his transplant, that Gary’s acute mind was beginning to falter.
His rebound – their rebound – started unraveling.
In February, back pain was added to the mix. At one point Gary’s back hurt so badly he had difficulty walking. He and Thelissa suspected a ruptured a disc because he had recently helped her father move a piano.
Meanwhile, demands were mounting in life outside of cancer: May was three months away. The couple had a race to plan.
In Thelissa’s journal, a two-inch thick record of all things cancer she had dubbed The Cancer Chronicles, she wrote, “Some aspects (of race planning) put me in a place of complete lack of confidence and ability, i.e. ‘What in the world am I doing?’”
But usually her doubts were answered by reassurances from friends and family. One evening when Thelissa felt drained after a long day at the hospital, she visited their friends, Roger and Ruth Dubrez, a husband-and-wife artist team the Zollingers had asked to create the race logo. When Thelissa saw their design, she loved it, especially the figure reaching its arms into the air.
“At that point, I was really low. Seeing the logo gave me that little lift,” she says. “I thought we can’t not do this race. So many people are putting a great deal of effort into it.”
In March, Gary had a bone scan. The nurse who accompanied him to and from the procedure gently shared with Gary and Thelissa what he saw: multiple spots along Gary’s spine, ribs and clavicle. The spots might indicate a bone infection. More likely, they represented cancer.
“He was a godsend. He told us in a way that we could take it,” Thelissa says.
Veterans to receiving hard truths, the couple still appreciated bedside manner. That exchange with the nurse helped prepare them for the doctor’s more straightforward report. “He said, ‘Quite frankly, your spine looks like Swiss cheese.’ That was jarring,” Thelissa says. And so much for a ruptured disc.
Thelissa, ever hopeful, had a hard time holding onto hope that day. On days she needed a good cry, she usually did so privately, away from Gary. But when they returned home after his bone cancer diagnosis, she crumpled into his arms. “I couldn’t be the strong soldier anymore at that point. I melted into a puddle of tears.”
Even journaling, her go-to coping strategy, required more strength than she could gather. Instead, she drew a sun at the top of one page and wrote simply, “Despite cloudy skies, including total overcast, the sun is always shining.”
By the end of March, tests confirmed cancer was widespread in Gary’s bones – not surprising for someone diagnosed at stage IV. Several other BAC transplant patients also had experienced recurrence within months of transplant.
But Dr. Weill was surprised that the cancer had appeared in Gary’s bones or anywhere for that matter, besides his lungs. BAC usually stays put. “I can’t think of anyone outside of Gary that had BAC grow outside of the lungs,” he says.
Gary then endured what cancer and chemotherapy are known for: pain, nausea, vomiting, extreme fatigue. Looking sick, feeling sicker. Each day, Thelissa gave Gary shots in the abdomen and sang, “Row, Row, Row Your Boat,” twice, as the serum slowly emptied. “Gary would fondly tell others, ‘She sings to me when giving me shots,’ but the only way I could do it was by singing that song,” she says.
Thelissa remembers missing Gary then, even though he was still alive.
In the months leading up to the first race, the Zollingers held multiple planning meetings in their den with family, friends and neighbors. Gary would lie on the couch as the others squeezed around the small room, some sitting in chairs, others on the floor.
“Planning the race was a good diversion for Gary,” Thelissa says, adding, “Working on the race was a good diversion for everyone.”
That first Gift of Life and Breath 5K Run/Walk, held on Thelissa’s birthday and the anniversary of Gary’s transplant, was a greater success than expected, attracting 400 participants and raising $12,000.
“With the help of so many others, we’d pulled it off,” Thelissa says.
Additional donations put the fund at $200,000 by year’s end. Since then, the race and endowment have raised more than $750,000 in research dollars.
Though Gary couldn’t run alongside loved ones that day, he experienced a different kind of thrill – the satisfaction that his vision was being fulfilled, and gratitude for the hundreds of people supporting the cause. At the finish line, he shared hugs with a dozen top finishers.
The significance of their accomplishment brought the Zollingers some peace, and memories they could hang onto as Gary’s health continued to deteriorate.
When Gary felt down, he didn’t express it verbally. He didn’t mope or complain, but he was quiet, pensive. Sometimes he would watch corny old movies, Thelissa says. She knew he was really struggling on days he would replay a short video about finding faith in Jesus Christ, or his favorite movie – the 1978 version of “Les Miserables.”
“That turning point where the priest gives Jean Valjean the candlesticks, you see Valjean turn his life around to become a force for good. Those examples spoke to Gary,” Thelissa says.
That summer Gary experienced multiple infections, blood transfusions, kidney problems and weight loss. The cancer had spread to his liver. Still, there were bright moments. Gary would happily watch Thelissa as she puttered in the garden and offer his “expert advice.” The couple visited their oldest daughter Jodi, and her family, at their new home in Wisconsin. And they drove Ashley, their youngest daughter, to Utah to prepare for her faith-based mission.
Thelissa also took on a “Gary-type project,” for a mental break and to prove to herself she could do it: She re-bricked an area outside their garage that housed their garbage cans. Mission accomplished.
Come September, Gary’s decline accelerated. The day after Labor Day, he lost consciousness and began gasping for air. Thelissa called 911.
Gary’ kidneys were failing and he had developed blood clots in his legs. At the hospital, he asked his care team to keep up certain tests, some painful, that would inform next steps of treatment. Thelissa finally asked them to let up, and she told Gary it was OK to let go. True to his initial resolve, he looked shocked and retorted, “I have promised the kids I will do everything I can to live!”
All of the Zollinger kids except Ashley were able to visit Gary before he slipped into unconsciousness. He took his last breath early in the morning of Sept. 9, 2007.
“Some people get built up after they die,” Jodi says. “I think we’ve yet to fully capture who my dad really is.”
Nearly a decade later, Thelissa often rereads a note Gary gave her years before the cancer, in which he expressed his love and wrote, “You are never alone.” She also treasures an unopened Valentine’s Day card Gary gave her 25 years ago. That day she was mad at him for a silly reason. Then she forgot about the card, until she discovered it in a dresser drawer several years ago. The envelope remains sealed, her husband’s words a secret. That unknown sparks her love and wonder.
Shortly after Gary was diagnosed in 2004, Thelissa told him she could not live in their house without him, so he had better stick around. “There is not one wall in this house that hasn’t been touched by his hands,” she says.
Indeed Gary is everywhere, especially in their family room, where he installed wall paneling made from oak flooring he’d bought at a discount. He made their kitchen table and benches, which have hosted thousands of family meals and may host a thousand more.
What surprised Thelissa later was that these ever-present signs of Gary comfort her.
“I go in the family room now,” she says. “I flip on the fireplace, and it’s like I’m enveloped in his arms.”
Note: In 2014, Dr. Weill led the Pulmonary Transplantation Council of the International Society of Heart and Lung Transplantation. Part of the council’s mission is to create transplant recipient guidelines for physicians. For the first time, the guidelines specifically addressed BAC and included transplantation as a treatment option. “It’s in the guidelines,” Dr. Weill says. “It might open up people’s willingness to transplant, maybe.”
Kelly Pate Dwyer is a freelance writer in Denver who writes about health.