‘Cancer Doesn’t Grow on Weekends’
Spending any time at the center means coming into contact with walking-and-talking stories of hope and survival.
Daly became a client in 2002, after a diagnosis of stage III melanoma. A clinical trial at the National Institutes of Health helped save his life. Isenhart says Daly taught her to “get out and enjoy life, and do things when you don’t feel like it. He said, ‘Enjoy your weekends, because cancer doesn’t grow on weekends,’ and then he said, ‘Deal with cancer for four hours [a day] and then forget it. Live!’ And I’ve done that.”
In fact, during her first meeting with Daly and O’Connor, the advocates helped develop next steps for Isenhart and her family to move forward not only with a medical plan, but a life plan, too. “That’s our focus at the center, not only the medical side, but the healing side and the living side,” O’Connor says.
Like Daly, other members of the center’s team have traveled the path from patient to advocate.
Jessica Gilkison, Mueller’s daughter and an attorney who had worked for a disability rights organization, couldn’t resist the chance to join the center’s team when a position supervising student advocates became available. She says that her experience as a client has given her “that inside perspective on how your life can be turned upside down by health issues ... on what it’s like to be sitting in the waiting room when you’re waiting for CAT scan results.”
Before he became a client, and later a staff advocate, Marc, who did not want his full name used, learned about the center during his second year of law school when he took Gaines’s course on consumer issues in health care. His homework included reviewing his own insurance policy — a three-hundred-page document — and diagramming what it did and did not cover. About a year later, Marc was diagnosed with testicular cancer. Because of the class assignment he had completed, he knew that his policy would cover the cost of his surgery and chemotherapy.
“I could understand. I could pull out this grid,” he says, adding, “Life is kind of crazy.”
Now cancer free, Marc began working at the center after graduating from law school in May, doing advocacy work and launching a new Web site for patients called “Pathways to Empowerment.” (See sidebar.) The center helped Marc research treatment options after his diagnosis, and as an advocate, he offers fellow student advocates a firsthand perspective on various situations, such as what it’s like to finish treatment.
“Just saying to somebody, ‘Go and celebrate’ — people might not be feeling like celebrating,” he says. “They might actually be feeling kind of abandoned, because [they’re] used to getting so much from everybody, and then all of a sudden, everybody’s gone.”
But the patient whose story still fuels the center is Gaines, whom doctors gave a 5 percent chance of surviving cancer.
“What I think I learned is, you’re either 100 percent alive or 100 percent dead at any given moment,” Gaines says. “What statistics tell you is whether you’re in a great big fight, a medium-sized fight, or a little fight. And people win and lose all three, and so it just tells you what your fighting mindset is.
“It tells you what level of risk you’ll take in treatment. It informs things. But I don’t think it’s very helpful on the ultimate question: will I stay or will I go?”
Jenny Price '96 is a writer for On Wisconsin.