Research, Risks and Waiting

This is Part III 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 for Part I and Part II.) 

By Kelly Pate Dwyer

The Zollinger family yard and garden 2007

Three surgical tubes sprouted from Gary Zollinger’s chest, slowly draining fluid from his lungs. Perhaps too slowly. Doctors worried that if they pulled them too soon, his lungs might fill with more fluid. But leaving the tubes in longer could lead to other chronic problems. Days turned into a week, then 10 days. Gary and his wife Thelissa needed to make a decision – immediately.

It was early September of 2004, four months after Gary had been diagnosed in the dangerous late stages of a rare form of non-small cell lung cancer. He was recovering at the UC Davis Medical Center in Sacramento, where doctors had cut a 12-inch “shark bite” incision into his back to harvest some cancerous lung tissue. Gary had signed up for a clinical trial in which his tissue sample would be used to create a custom vaccine treatment.

To seal off the fluid, Gary’s doctor suggested using a talc substance to essentially “glue” Gary’s weeping lungs to his chest wall. Thelissa’s mind immediately jumped to the double lung transplant procedure she’d just learned about at UC Davis’ medical library: If Gary’s lungs were attached to his chest wall, would that make it difficult for a surgeon to take them out later?

The potential upside for future transplant won out over the risk that fluid levels could rise to dangerous levels, drowning Gary’s breathing. The couple agreed Gary would forgo the “glue” procedure.

When the Zollingers shared their decision with some medical students involved with Gary’s case, “they were visibly displeased,” Thelissa recalls. Then she really dreaded seeing the doctor, expecting he would question their judgment as well. This was one of many times the Zollingers weighed a doctor’s expertise against Thelissa’s crash-course cancer education.

“The next morning, it was one of these tender mercies. I’d been praying my heart out,” Thelissa says. The doctor entered Gary’s room and announced in grand fashion, “The Lord has intervened! We’re just going to pull the tubes!”

And so they did, immediately. Surprising both Gary and Thelissa, Gary was breathing well enough for release a few days later. That’s when the couple hit the highway in their rental car with some important cargo – another sample of Gary’s lung tissue sitting in a cooler of ice. Seeing as they were already in California, they would drive to a specialized medical lab in Long Beach, Rational Therapeutics, to execute Thelissa’s backup plan (in the event the UC Davis vaccine didn’t work). The lab would test the cancer tissue, then recommend best matches among available cancer drugs.

Between October and December of that year, Gary flew to Sacramento every other week for treatment. On each visit, about 10 vaccine-filled needles were inserted into each of his thighs.

Despite this all-out assault on the disease, Thelissa suspected something wasn’t right. “Sometimes I would hear his lungs at night,” she says. “They would make this crackle sound.”

A CT scan in January 2005 showed considerable cancer growth. Naturally, the news was devastating. But the couple reacted calmly. “One of my favorite scriptures came to mind,” Thelissa says. “‘If ye are prepared, ye shall not fear.’ Gary and I had prepared for other options. It was time to take the next card in the deck and use it.”

Gary stopped the vaccine treatments and started on heavy-hitting chemotherapy drugs, including medications recommended by Long Beach’s Rational Therapeutics.

“He’d schedule his chemo on Thursdays so he could crash over the weekend,” Thelissa says. “On Monday he would rally for work.”

Complications followed – low white blood cell counts, blood clots in his lungs.

Throughout that winter, Thelissa had quietly gathered articles and other data that would help her make a case for the ultimate backup plan: a double lung transplant. One of her best sources was a woman who also had BAC and was awaiting transplant at the University of Alabama (the site of multiple BAC transplants, as Thelissa had learned in her research). The two women talked by phone frequently and privately.

Thelissa kept the conversations from Gary at the time, knowing a double lung transplant was a high-risk procedure and he’d already endured so much. “I thought there’s no way I’d want Gary to go through this if it’s not absolutely the right thing to do,” she says.

Thelissa was most excited to learn that some of the 11 Alabama patients were alive, five years or more post-surgery. Cancer recurrence was common, but Gary’s odds were better with a transplant than without, considering BAC is confined to the lungs, his cancer was advanced, and his symptoms had taken a turn for worse. Research varies on the five-year survival rate for transplanted BAC patients, but current reports put that number at 50 percent or better, and 75 percent among the Alabama patients.

At the end of January, not quite three weeks after starting traditional chemotherapy, Gary was hospitalized at University of Colorado Hospital, then in Denver, with blood clots in his lungs. During that stay, Thelissa visited the transplant department and discovered that Dr. David Weill – one of the surgeons she’d read about from the Alabama case series – had joined CU’s transplant team.

What were the chances? This had to be a good sign. A double lung transplant was looking better and better.

Thelissa showed Gary’s oncologist, Dr. Karen Kelly, some articles about BAC transplantation. When the doctor offered to look into it, “I said, ‘yes please,’” Thelissa remembers. “And Gary is sitting on the exam table saying ‘Oh my word, what are you thinking?’”

But Thelissa pulled rank. Researching treatment options was her job, and Gary was busy enough combatting this dogged disease. He wasn’t thrilled about the transplant idea early on, but it was hard to argue with the survival rates. In mid-February, the Zollingers met with Dr. Weill and other members of the CU transplant team.

To qualify for transplant, Gary’s cancer had to be confined to his lungs. He would undergo a PET scan, brain MRI, an arterial blood gas test and six other tests to clear that hurdle. He had to prove he could pay for the procedure and that he had a full-time caregiver. Check and check. Gary was approved for transplant by late April 2005. It was go time – or so they thought.

In mid-May, Gary’s health insurance plan denied coverage for the surgery, estimated at around $500,000. Thelissa was told the company didn’t approve lung transplants for cancer. She hit the roof. She pushed back, she talked to Gary’s care team and a few of them called the company. One argument they offered: The insurer covered liver transplants for cancer patients. Why not for lungs?

“I don’t know if that was the clincher, but it certainly didn’t hurt,” Thelissa says. In late May, the insurance company reversed its decision. Gary was officially added to the transplant list, in the No. 7 spot.

Then they waited. And waited. Spring turned to summer and Gary grew weaker. He switched cancer drugs in June. In August, he moved up the list to No. 1.

Coping with the frustrations of waiting, Gary poured himself into his work and kept his dry sense of humor. He and Thelissa needed the comic relief. “There had to be some levity,” she says. “If we kept our heads in the trenches 24-7, we’d lose it.”

Again Gary changed drugs in September and Thelissa recalls, “His ability to think clearly was getting fuzzy. He just wasn’t as sharp. He relied on me for some pretty major decisions.”

Thelissa had a realization. Though she didn’t know what lie ahead and still hoped for the best, for now she needed to adjust to their “new normal,” one in which she would take on some of Gary’s roles as his diseased progressed. “I wasn’t a wimp, but I had always depended on Gary a lot. Our family, lots of people depended on Gary because he was patient, he was wise, trustworthy.”

The Zollingers’ oldest daughter, Jodi Williams, also described their family’s new normal. She made it a top priority to attend two of her younger sisters’ graduate school commencement ceremonies, knowing her parents wouldn’t make it. “Dad was too sick then,” she says. “I don’t know that my mom ever left my dad during that time.”

In March 2006, 10 months after Gary was added to the transplant list, the couple received a call about available lungs. But within a few hours, a second call came. No go – the lungs were damaged.

As the wait continued, Gary needed a project. That’s how their backyard landscaping plan came about.  

“I think if he could have chosen it, my dad would have been a farmer,” Jodi says. “He loved land and had this big garden.”

In fact, Gary worked on his grandfather’s dairy farm during college. And at their south Denver home, he had grown vegetables, fruit trees and – perhaps most importantly – grapevines. In keeping with an old family tradition, Gary, Thelissa and their kids produced “Zollinger Grape Juice” for their family and many others. Thelissa still does.

Their landscaping project would downsize the scope of Gary’s garden and add some perennials. Thelissa checked out design books from the library. “We’d dive into those books. It was a great diversion,” she says.

Although Gary was on oxygen at the time, he found the energy to start ripping out a small landing off their back door. That got him in trouble with one of his doctors – the work was too hard on his heart. So the Zollingers hired landscape workers to help.

But Gary didn’t let up on being a dad or granddad. When Jodi and her family walked into the house for a visit that April, Gary pretended to be asleep on the couch. Then he squirted his granddaughters with hidden water guns. And after Jodi teased her dad about the old, uncomfortable hide-a-bed sofa in the guest room, unbeknownst to anyone he climbed into the attic to fetch a foam mattress and laid it on top.

Gary’s health continued to deteriorate. “One day, he was getting out of the tub and had this terrible coughing fit, which turned his feet blue,” Thelissa says. “He couldn’t oxygenate. I thought, we can’t wait forever for this transplant.”

At a checkup, Gary’s regular doctor was out so he saw her colleague. Thelissa asked the doctor what he thought about the transplant option. “He said, ‘Well, it’s OK if you’re risk-takers,’ then he started talking about a new phase 1 clinical trial. I thought, ‘a phase 1 trial and Gary’s got stage IV lung cancer?’ ” This seemed like too much of a gamble – the drug would be years away from its potential approval.

“I was so mad I could hardly see straight,” she says. “After all Gary had been through, I was hoping for some validating support, not an alternative treatment plan.”

In her way of turning negatives to positives, Thelissa would come to view that maddening encounter as a blessing. The doctor calling them “risk-takers” forced she and Gary to reflect on each of his treatment steps the prior two years. They tried to look at the transplant option through fresh eyes. Was it really the way to go?

The couple came to the same conclusion: They were indeed risk-takers, by nature and force of will. Transplant was Gary’s best option. He would do it.

Now, if they would just get that call.