Mike's Story was featured as part of U Magazine's article "They Just Want to Feel Normal".
Mike Pena was sick, but no one knew what was wrong with him. He would come home from his job as an equity trader in downtown Los Angeles, fall asleep in the afternoon, and not wake up until the next day. Doctors said it was stress, exhaustion, maybe depression. He was only 22, after all. What else could it be?
There were other changes. Typically reliable, he stopped showing up for appointments. He'd plan to meet his girlfriend at the movies, then not turn up or even call. Usually easygoing, he was moody and temperamental. Slowly, his friends began drifting away.
It wasn't supposed to be like this. As the eldest child in a Cuban-American family, he'd grown up in South Gate, a middle-class and largely Hispanic enclave in East Los Angeles. With an undergraduate degree in economics from Pepperdine University, he'd been the first in his family to graduate from college. He'd landed a good job, bought his first car, was living the life of a newly independent young man. "Things were great," says Mike, a sweet-natured guy with glasses, brown hair and a trim mustache and beard.
Then the lump turned up on his neck. Alarmed, he went to the emergency room at UCLA. An X-ray revealed a large mass, and he was hospitalized. A biopsy was taken. The diagnosis: Hodgkin's lymphoma, an aggressive form of cancer common in teens and young adults.
Yet, few people could believe it. His mother told him it was just a cold; he was going to get better. His friends were stunned. "No one expected this," Mike says. "This was really challenging because of the age bracket I fall into. Doctors don't screen for cancer in young people. I did have physicals, but no one checked for lymphoma."
Traditionally, cancer patients fall into two distinct populations: adults and children. Teens and young adults, like Mike, are in something of a medical limbo. Sometimes they are treated by pediatric oncologists; other times, they are treated by adult oncologists.
While receiving treatment, Mike was on a hospital floor with much older adults. He felt isolated, without any peers to talk to. He desperately needed support, but when he went to a counseling session, the other patients were all in their 50s and 60s.
"I couldn't relate," he says.
Although Mike's company had kept him on, he felt extremely vulnerable. While he was going through radiation, he went back to work. "Because I was so afraid to lose my health insurance," he says.
During the many months he was fighting cancer, he lost a lot: his apartment, his savings, his car. He went bankrupt. More than that, he lost the carefree years of his 20s.
Still, he feels lucky. Today, he is 29, married, employed and five years out from his last cancer treatment, a grueling stem-cell transplant. And Mike has become something of an advocate on behalf of adolescents and young adults who have gone through similar experiences. "I want to get the word out. It's really important that we address the needs of young people," he says.
One of those needs is for a place within the hospital setting that adolescents and young adults can call their own. The UCLA Daltrey/Townshend Teen & Young Adult Cancer Center will be such a place.
In June 2010, Dr. Casillas and a team of teen and young-adult cancer experts spent a week in the U.K., visiting Teenage Cancer Trust units. Teens were housed together in modern spaces with big, cool photographs covering the walls. There was an area with couches for socializing, TVs, computers, video games and a pool table, and a kitchen where the teens and their families could cook. To help the patients endure the loneliness when they were confined for treatment, each room had Internet access so they could talk with their friends or connect with their teachers. Digital lighting allowed them to control the atmosphere. Medical equipment was hidden away behind a large metallic board, where teens posted photos and other personal memorabilia.
What really stood out for Dr. Casillas was seeing the tight-knit medical culture the charity had nurtured. The pediatric oncologists, adult oncologists, social workers, psychologists and nurses all worked together in one place, a community with the same mission. "It was truly patient-centered care," she says.
"What I really liked about it," says Mike Pena, who was one of two young-adult cancer survivors on the trip, "is all the services were centralized. It was cool to see someone address all the concerns I had, to hear from other young people that they had an easier time going through cancer because they had all these services at hand."