Bad News, New Tires and Finding Normal

This is Part II 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 Part I.)

By Kelly Pate Dwyer

Gary and Thelissa Zollinger at UC Davis September 2004

Gary Zollinger swallowed his first dose of oral chemotherapy in the parking lot of his doctor’s office. Then he announced to his wife, Thelissa, they needed new tires. The next day they would drive their van to Utah to visit family.

“Standing there at Discount Tire, I was numb,” recalls Thelissa. “Gary was just diagnosed with stage IV lung cancer, and he wants to go buy tires. That was Gary.”

It was April 29, 2004. Gary had long been prone to respiratory issues, but his coughing episodes had become more pronounced in the past five months. Several tests at Denver’s National Jewish Health, a hospital renowned for treating respiratory issues, had not identified a clear culprit. Gary was a non-smoker. Doctors had tested him for asthma, infections and allergies. He’d tried antibiotics.

It wasn’t until an abnormal CT scan prompted a biopsy that doctors discovered a rare subtype of non-small cell lung cancer, then called bronchioloalveolar carcinoma, or BAC. Thelissa assumed if cancer were the culprit, it had to be in stage I. Gary was strong. He looked healthy.

While they had guessed at other conditions, the cancer had stealthily and relentlessly advanced toward life-threatening stage IV. All those months with a cough – if only they’d discovered it sooner.

While the van got its new tires, the Zollingers walked across the street to Applebee’s to call their kids. Later that afternoon, Gary visited a family from church in his role as a home teacher. (In the Mormon religion, every family has a home teacher, someone who visits about once a month to share a gospel message, and check in on them generally.)

From this first day of his cancer battle, Gary would see to it that life go on as normally as possible, Thelissa says. “When life is normal, you buy tires. You go home teaching.”

The couple and their youngest daughter, Ashley, then a high school senior, made the full day’s drive to Utah with little talk and multiple replays of a favorite classical choir CD. In the comfort of one another, each quietly processed Gary’s news. Until Grand Junction – when they stopped briefly at the emergency room because Gary was experiencing shortness of breath. Was it the cancer? The altitude? His nerves? They weren’t sure, maybe all of the above.     

The Zollingers stayed with their oldest daughter, Jodi Williams, and her family in Ogden. They also were joined by their kids Nathan, Alyson and Stephanie – who were attending or had recently graduated from college nearby. Only their daughter Jamie was absent, traveling in Argentina on an 18-month faith-based mission. They visited Gary’s father and Thelissa’s parents. They played with their grandchildren and went on a hike.

“He kept his sense of humor. He kept things lighter,” Thelissa recalls. “But tears were shed for sure. Lots of prayers were said.”

Jodi remembers crumpling on the kitchen floor when her dad called with bad news. But once her parents arrived in Utah, they spent the long weekend in the usual way. “We’d sit around and talk, telling jokes, telling stories and eating good food. That’s what we do.”

Jodi also remembers her dad promising his family then, as he would again and again, that he would do everything he could to beat the cancer.

Gary and Thelissa were raised in Utah. After getting his MBA, Gary started his career in the oil & gas industry, which would take the couple to Houston twice, Ponca City, Okla., and Wichita, Kan., before they arrived in Denver in 1981 with Total Petroleum. Thelissa taught elementary school until having kids, then in 2000, once Ashley started high school, she returned to teaching as a special education substitute.

When Gary’s employer sold its North American refining operations in 1997, he started his own consulting firm. But the market was lean then, Thelissa recalls. To help cover bills, Gary also started substituting, teaching high school German.

By the time Gary developed cancer in 2004, he was working for Pacific Energy, a company under the wide umbrella of billionaire Phil Anschutz. This job provided a silver lining in the relative context of cancer: excellent insurance. Gary and Thelissa had selected a PPO health plan over a plan with lesser coverage – just weeks before his diagnosis.

What’s more, the job paid well. Then Gary was offered a promotion shortly after his diagnosis. He wasn’t sure he should accept it. He sought counsel from a close friend, who offered this advice: “Live now as if you will live forever.” Gary said yes to the new role.

“He’d take a pillow to work and nap under his desk during lunch,” Thelissa says. “Gary worked until the day he was transplanted. Work kept him engaged. Work was good. But work was hard.”

Gary conserved words, especially dealing with conflict. If a co-worker was upset, he’d let the person spout off, sometimes tripping on his or her words. In the meantime, Gary gathered his own thoughts for a response. He’s been called “a gentle giant.” And kind.

Jodi remembers times she would go with her dad to buy groceries for someone in need, then leave the bags on their front porch. “He was a friend especially to people on the margins,” she says. “He taught me to see the value and the worth in every person.”

Gary was always available for his kids. When first grade started, Jodi was nervous about going to school. So her dad sat quietly in the back of her classroom until she was ready to go it alone.

As she and her siblings grew and faced the inevitable challenges of adolescence, their dad would listen, usually with a favorite snack – popcorn or beef jerky.

“He would never tell me what to do,” Jodi says. “He’d ask a lot of questions and allow me to reflect.”

If Gary was naturally reserved, he certainly didn’t like talking about cancer. He did not like being the center of attention. Once, when close friends were visiting, Thelissa shared some cancer updates with them. She glanced over at Gary, who motioned his finger across his throat.

“I just needed to unload,” she says. “But for Gary, it was too much. He thought, ‘Here are our friends. Let’s talk about the weather, about baseball spring training.’ He wanted to talk about what you talk about when people don’t have cancer.”

Looking back now, Thelissa summarizes sentiments expressed by C.S. Lewis in A Grief Observed: “You’re angry at people for what they say, and you’re angry at them for what they don’t.”

Months before Gary’s diagnosis, the Zollingers had planned a June trip to New York with Stephanie, to check out the city and campus at Columbia University, where Stephanie would enroll in a master’s program the next year. Thelissa saw opportunity: Gary could get a second opinion at Memorial Sloan Kettering Cancer Center.

The doctor there confirmed his diagnosis and agreed with his current treatment plan – a recently introduced oral chemotherapy drug called Iressa. No one wants bad news twice, but hearing the same assessment gave the couple confidence that Gary was taking the right course.

One evening during that trip, Thelissa and Stephanie went to see Fiddler on the Roof.

“The music started, and I was immediately pulled in,” Thelissa recalls. “For the next three hours I was drawn into this story. It was oxygen to my soul. After the curtain closed, I was lifted above. I’d been in this dense, emotional cloud cover and now I could see that the sun still shines. That gave me hope – I can do this.”

She would hold onto moments like that in the months ahead. By the end of July, a CT scan showed the Iressa wasn’t working. The cancer was growing.

The Zollingers, long devout in their faith, looked to God and prayer more than ever. They also benefited from a deep and wide support system, a saving grace for people and their caregivers dealing with a chronic or terminal illness. In the Mormon religion, families do for others in both organized and spontaneous ways. For example, one day that November, Thelissa caught a strange whiff as she walked downstairs to the basement. It was flooded with backed-up sewage, and had been for days. In no time, the Zollingers’ home teacher and his wife had arrived to help clean up, smiles on their faces in spite of the stench.

On another occasion, while Gary was in the hospital, their local congregation’s Relief Society, a committee of women who help fellow families in need, cleaned the Zollingers’ home.

“Twenty women descended on my house,” Thelissa explains. “They cleaned every nook and cranny. You could have eaten off the floor.”

That’s just how things go in their spiritual community. Gary and Thelissa had and would do the same for their friends.

Knowing he was in for a huge fight, Gary offered Thelissa this deal: If she would research doctors and treatment options, he would do everything he could to live. And so it unfolded. She stopped teaching and made a full-time job not only of supporting her husband but researching his specific form of cancer, contacting doctors, asking questions.

On a BAC listserv, Thelissa learned about a clinical trial at UC Davis Medical Center in Sacramento, in which doctors cut out samples of cancerous lung tissue to create patient-specific cancer vaccines.

Gary was accepted into the trial, with his procedure scheduled for late August. In proportion to the insidious nature of the cancer, this “procedure” involved a 12-inch incision in his back, earning it the nickname “shark bite.”

Once the operation was complete and Gary was stable, Thelissa grabbed her cancer bag – a small black bag with an opaque cancer ribbon on it – and walked to the UC Davis’ medical library to see what she could dig up on BAC. That bag, which contained notes about Gary’s treatment, test results and a detailed personal journal she started around the time Gary was diagnosed, went everywhere the couple went.

“The library had walls of these red-bound binders, rows and rows of them,” Thelissa recalls.

A librarian asked how he could help. Fortunately, he took the digital route. On the computer screen, Thelissa waded through dozens of article summaries about BAC until she spotted one about a case series of lung transplants at the University of Alabama. Had she struck gold? She raced through the article, then spotted several others. Her hopes were building. Thelissa printed the articles, grew a little taller and exited the library doors into the California sunshine.

“As I took the articles back to my hotel room, pencil in hand, I underlined and underlined and thought, this is our ticket,” Thelissa recalls.

Bursting with the possibilities before them, she shared the exciting news the moment she returned to Gary’s room. He looked at her as if she were crazy. Thelissa quickly realized that the day after a painful surgery was the wrong time to tell her husband she wanted doctors to take out his lungs.