Former Seattle U. soccer player Steve Jenkins winning battle against health woes

For all of his adult life Steve Jenkins has had one job, one unambiguous assignment, one unenviable task.

Stay alive.

There have been no days off, no lunch breaks, no holidays. Just doing whatever it takes to find the air in his lungs for that next deep breath, or to find that next rush of willpower to fight the crippling pain, or to discover the rationale to keep going.

This has been Jenkins' life, even before he played soccer at Seattle University.

"My job wasn't only a part of my life — it was my life," Jenkins, 25, said last week, sitting in the Tea Room at the University of Washington Medical Center. "It came to the point where my health became my only responsibility in my life."

But now, after a lifetime of struggles as a cystic fibrosis patient, after the seemingly interminable wait for a lung transplant, after that transplant and the subsequent discovery of a large, malignant tumor behind his left eye, Jenkins is getting the chance to change occupations.

In the past few months, he has been told his cancer is in remission and the health of his lungs is improving.

"It's like I'm getting a new life," Jenkins said. "It's like being kind of a new person. Now, I've been learning to live in the moment, not worrying about the future, not regretting things in the past, not reminiscing. And learning how to live like that has been awesome."

His story is remarkable, his courage incomprehensible, his fight greater than any Olympian's. Steve Jenkins is a living example of the idea that you can't give up, even when that option seems the only one left.

For as long as he can remember, Jenkins, the son of former Seattle Sounder Tommy Jenkins, has lived with the fear of death. He has been afraid that the next time he tries to take a breath, there will be no air to fill his lungs. He has suffered through serious bouts of anxiety and depression. But Jenkins has an athlete's heart. Despite his cystic fibrosis — a progressive disease that causes the body to produce thick mucus that clogs the lungs and digestive system — he played soccer at Seattle U.

"I had played soccer all my life, but gradually I was getting sicker and sicker and it got harder and harder to play," Jenkins said. "It was just getting really hard to catch a breath and I didn't have many good breaths to catch in the first place."

He couldn't run as hard as the other players on the field, but he compensated by being among the best with the ball. His touches were clean. His passing was sharp. He rarely gave away the ball.

With his lung function at 36 percent, Jenkins played several minutes in two games in his freshman season. He played two more games in his sophomore year, despite losing another 2 percent of lung function.

It wasn't until training before his junior season that CF forced him to leave the team. He had enormous difficulty just walking up the hill from campus to get to the hospital for his preseason physical.

"A ton of work went into a small amount of time on the field," he said. "But I wasn't on the team to play in games. I was on the team to play in practice. The team was always like my family away from home. And I think being on a team gave me a purpose and helped me mentally."

Jenkins practiced once in his junior season, in 2004, then realized he needed new lungs.

"I need to redshirt," he told himself, refusing to believe the inevitable, that this practice would be his last.

"He gave every ounce of effort he had in that practice," then-Seattle U. coach Pete Fewing said. "I think he taught us and gave us more than we gave him. He was a constant role model of fight. Didn't complain about his circumstances and was always looking for ways to be healthy."

After he left the team, Jenkins was promised a lung transplant in three to six months. He worked as hard as he could, lifting weights, walking, doing push-ups, to be in shape for the surgery.

"I was like a heavyweight fighter, waiting for that championship fight that never came," Jenkins said. "Because I worked out, I got sicker slower. And my name fell farther down the transplant list.

"That hit me hard mentally. In January of 2007, I started thinking, 'They're not going to help me. They're just going to let me die like this. This is my fate.' I accepted that those were going to be my last few months."

His lung function dipped to 17 percent. He was "guppy breathing," only able to take quick, shallow breaths.

"I was scared to sleep," he said. "I was afraid I wouldn't breathe and I'd die. I was just so afraid of not being able to breathe. Just breathing was the hardest work I'd ever done."

Finally, on March 6, 2007, he got his transplant.

"When I heard I was going to get the transplant, I was absolutely unable to celebrate," he said. "I was already extended beyond the end of my road."

But instead of the end of the road, the transplant was the beginning of another difficult road. While recovering, while he was relearning how to breathe with a set of healthy lungs, Jenkins began experiencing a pain behind his throat. He suffered severe headaches. And last January, he was diagnosed with non-Hodgkin's lymphoma.

"Until about two weeks ago," he said, "I have been resigned to death, so why did I keep going? I don't know. I guess that's just who I am. Even if I'm resigned to dying, I don't stop working hard. I've fought for everything."

Jenkins has approached his illnesses with an athlete's competitiveness. Even on his worst days, and there have been many, he has found some reservoir of hope. Even on the days when he questioned whether all of the pills and probes and pains were worth it, he never lost his fight.

In late February, doctors offered him two approaches to fighting the tumor, which was still growing and baffling doctors. Not surprisingly, he took the most aggressive option, a combination of six rounds of chemo and five weeks of radiation therapy. And in June he had a stem-cell transplant.

He was in the hospital for 28 days. He didn't take in any food, by mouth, for two-and-a-half months.

"I wanted to attack it with absolutely everything I had," he said. "That's always been my attitude. Give it everything I have."

Finally, he has found hope. His body slowly is feeling restored. When he was diagnosed with cystic fibrosis, his parents were told he wouldn't live past 18. Now seven years past that, the odds don't feel insurmountable.

"The fear of death has been lifted from my shoulders," he said. "I no longer fear death. And that has been one of my main, biggest burdens throughout my whole life, through all this trauma and illness, is fear of death. Now I feel such an amazing peace. It's unbelievable."

The left side of Jenkins' face is numb and probably will stay numb for the rest of his life. He will undergo more precautionary scans this week and he will undergo one dose of maintenance chemo every three months for the next two years.

"One day I'd like to finish college, get married and have a family," he said. "But for now I'm just focused on living one day at a time, one task at a time. And all I can do is give it my best, like I always have."

Steve Jenkins laughs easily and takes a remarkably deep breath. From the Tea Room, through the window, looking out at the trees that rapidly are losing their yellow and red leaves, for the first time in a long time, he see clearly.

Now, after his fierce struggles, he can envision a life that involves more than just staying alive.

Steve Kelley: 206-464-2176 or skelley@seattletimes.com.