During years of mountain biking, Jon Wilmot has toiled up the Waterton Canyon Trail when he feels the world close in a bit. The seven-and-a-half mile ride ends at Lenny’s Rest, a memorial bench that Wilmot calls “a place of peace and rejuvenation – a place to calm down.”
Wilmot, 47, still makes the ride to Lenny’s Rest today, but completing the climb and taking time to look back on his journey brings an extra measure of satisfaction. “It’s a little bit harder to get to now,” he says with a smile.
That’s because Wilmot is a stage IV lung cancer survivor. The March 2011 diagnosis blindsided him. He was a nonsmoker and avid mountain biker who jogged regularly and was in good overall health. He’d had no symptoms until a slight but persistent wheeze sent him to his physician for a check-up. A chest scan eventually found three spots on his left lung, but they were diagnosed as pneumonia.
Even after a regimen of antibiotics failed to clear up the problem, a pulmonologist at National Jewish Health assured him that it was highly unlikely that the lesions were cancerous. They were the result of a fungal infection or asthma, the specialist surmised. Wilmot didn’t feel right. He was fatigued and had pain in his chest and back, and his exercise routine had tailed off. But he shared the pulmonologist’s skepticism.
“I was young and healthy,” Wilmot said. “A cancer diagnosis didn’t fit me.”
Besides, he didn’t have space in his life for a serious disease. He and his wife Leann had adopted a baby girl, Marlee, late in 2010. “My life was full of her,” Wilmot said. “My focus was there.”
But a bit of biopsy tissue confirmed a late-stage lung cancer diagnosis and triggered a series of questions for the shocked Wilmot: Is it curable? How long do I have to live? What are we going to do?
Nearly five years later, Jon Wilmot doesn’t worry about those questions. He found his path forward at the intersection of modern medicine, an unshakable commitment to physical activity, and religious faith. His cancer is under control. He credits the medical care he received at University of Colorado Hospital – including trial drugs that target a cancer-triggering cell mutation – but even if his cancer makes a comeback, Wilmot knows he has the inner resources to fight back.
“I’ve recovered because of faith and family – supported by UCH and by exercise,” he said over lunch in a Lakewood restaurant last week.
If one were to tell Wilmot’s story from a clinical perspective, the turning point would be February 2013, nearly two years after his diagnosis. Prior to that, he had endured three separate regimens of chemotherapy. There had also been three painful procedures to drain fluid from his lungs. Before the first of those, he found himself at the end of a vacation in Wisconsin lying on the floor in an airport, exhausted and wracked with pain. When he rolled on his side, he could feel fluid sloshing about.
“It felt like a two-liter bottle of Pepsi rolling around in my lung,” he recalled. Not far from the truth: Surgeons later drained two liters of pleural fluid through his left chest wall cavity. After the third draining took three liters, he underwent pleurodesis, a procedure that involved spraying talc through a chest tube to make the membrane outside his left lung adhere to the chest wall. That closed the chest cavity so fluid couldn’t build up again, but he spent a week in the hospital recovering, humbled as he struggled from one end of a hall to the other with the help of a walker.
Still, by August 2012, Wilmot was not only stable, but had also shown improvement after infusions of another chemotherapy drug. He started to get back into biking and jogging, maintained his full-time job as well as a small, self-started business on the side, and came in every three weeks for blood tests and every six weeks for imaging scans.
Finding the target.
Then came a new ray of hope. Tests of his genetic material at CU’s Colorado Molecular Correlates Laboratory showed that Wilmot’s lung cancer was triggered by a mutation of the BRAF gene. The BRAF mutation is most often linked to melanoma, but it also drives tumor growth in about 2 percent of patients with non-small cell lung cancer, said Wilmot’s medical oncologist, Ross Camidge, MD, PhD, head of UCH’s Lung Cancer Program.
A drug targeting the BRAF mutation had been approved to treat melanoma. Now the University of Colorado Cancer Center was enrolling patients in a trial of the drug to treat lung cancer patients with the rogue BRAF gene. That promising news, however, had a catch: To qualify, patients had to show their tumors were growing. Wilmot’s were not and the trial was set to close to new patients fairly soon. Camidge made a startling suggestion: Wilmot might go off the chemotherapy regimen in the “hope” of seeing his condition worsen so he could enroll in the trial.
In Camidge’s view, the approach wasn’t at all risky. “He was doing fine on the chemo, so we had an ace up our sleeve,” he said.
Wilmot agreed to the plan “with a little trepidation,” and from September 2012 through January 2013, he was off all treatments and waiting for a change that didn’t come. As he counterintuitively waited anxiously for his condition to worsen, his equally counterintuitive cancer refused to do so. With the trial set to close in February, Camidge finally detected a small change in Wilmot’s cancer cells and enrolled him in the trial.
After nearly two off-and-on-years of infusions, Wilmot welcomed taking two pills twice a day, although he struggled initially through periods of skin flushing and a bout of the rigors – severe shivering and chills that landed him in bed bundled up in a coat, hat and gloves and draped with an electric blanket cranked to the maximum temperature.
Back on the bike.
Once he got past those challenges, however, Wilmot thrived and his cancer became dormant. He returned to mountain biking with a vengeance, pedaling 1,700 miles and climbing a total of 100,000 vertical feet in 2013. He was building on that success in June of this year when he felt some intermittent chest pain. A PET scan confirmed the cancer had ”awoken” and become active again, Camidge said.
But medicine once again had an answer. Experts in melanoma had been hard at work deciphering the roots of cellular resistance to the BRAF-targeting drug. A second drug inhibiting the MEK protein, a signaling pathway for cancerous tumor growth, had shown promise as a combination therapy with the first medication. Wilmot began adding the second drug to the original treatment and has gotten his cancer back under control.
The “heavy lifting,” as Camidge put it, of melanoma researchers had paid off for Wilmot. “We rode their coattails,” Camidge said. As the BRAF-related melanoma investigations continue, patients like Wilmot may have even more treatment options, he added.
Faith to fight.
Wilmot is on track to ride more than 2,000 miles on his mountain bike and climb 150,000 vertical feet in 2014.
He’s deeply grateful to Camidge and the hospital for the clinical care he’s received and for the part advanced medicine played in renewing his sense of purpose. But for him the turning point in his battle occurred in the space of a few quiet, early-morning moments the day after his diagnosis.
He awoke, got Marlee out of her crib, and returned to bed to cradle the little girl in his arms. But Wilmot wasn’t at peace. He was consumed with anger at the God he thought had betrayed him.
“I thought, ‘God, why the hell did you give us Marlee if you knew this was going to happen to me?’” Wilmot recalled. He then heard a voice – not his own, he said – in his head, providing the answer.
“It said, ‘I gave you Marlee because I knew this was going to happen. She’s the angel I sent to watch over you,’” Wilmot said. “I was humbled when I heard it.”
He drew a simple conclusion. “The mind is a powerful thing, and I needed to get it in line with God’s word,” he said. “I had a decision to make – to focus on the bad things and go into a downward spiral or to focus on the good. Every day I thank God for all the blessings I have.”
With that conclusion, Wilmot added, he tuned out the statistics his physicians told him about survival rates for lung cancer. “I just said those people aren’t me. I have a six-month-old baby. Not surviving was not an option.” He’d supplement his faith with the best treatments science has to offer, but always return to his bedrock beliefs.
“I have responsibilities,” he said. “It’s not my life I’m worried about. I’m not living for me. I worry for my wife and daughter.”
Let’s get physical.
Wilmot will give himself credit for his recovery in one respect: his commitment to physical activity. At the same time he decided to ignore lung cancer survival statistics, he also tossed aside thoughts he’d be so weakened by his disease that walking to the mailbox would be an ordeal.
He now calls the notion “Premature,” adding that he was able to handle the challenges of his treatment because he was in good physical shape and pushed himself to stay that way. “That was huge. My body could handle more,” he said. “Exercise should be part of treatment. Physical activity should be part of the prescription.”
It’s a lesson he revisits each time he begins the climb to the bench at Lenny’s Rest. He knows it won’t be easy, that his body will protest, but also that the payoff is in the effort required to get there.
“Until I get my head right, it doesn’t matter what kind of treatment I get,” he said. “I go back to my places of strength to turn around and set goals for myself.”