Patients turned advocates: Staying involved to help others

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patientadvocatesuperhero.jpgGetting through cancer treatment is like surviving a siege.

When it's over, many patients resume their lives and don't look back.

For others, though, the experience compels them to help others in the same situation.

So they keep a foot in the world of cancer treatment by helping new patients individually, by staying involved with support groups, or by supporting research or advocacy efforts.

Here are brief profiles of three people who felt called to speak up for cancer patients. One lobbies for more research and awareness of pediatric cancers, another works one-on-one with patients and contributes to research, and the third counsels patients through the Anderson Network Telephone Support Line and a national foundation.

From the personal to the political
Val Marshall is the mother of a pediatric cancer patient, though pediatric hardly seems to apply to her tall, athletic son Addison, who will enroll at Texas A&M University this fall.

Since Addison was diagnosed with acute lymphocytic leukemia (ALL) nearly three years ago at the age of 15, Marshall has accompanied him to countless appointments and treatments.

A professional organizer, Marshall became involved with other parents while they passed time in waiting rooms. "They noticed my binder," she says.

Marshall's customized binder keeps track of Addison's appointments, medications, treatment requirements and more. Knowing how overwhelming this task can be for parents already under stress, Marshall offered to make binders for other parents.

Later, through her involvement with the childhood cancer support group Candlelighters, Marshall heard about and signed up for Advocacy Day in Washington, D.C.

A former pharmaceutical rep, she knew the drill of visiting congressional offices, making her case and trying to make an impression.

But now she was lobbying for the "medical orphans," as she calls them -- the 13,500 children diagnosed with pediatric cancers each year in the United States. Because these are relatively few diagnoses, research funding is lacking, she says.

MD Anderson is the "last station of hope" for many families, she says.There are so many kids who don't make it." She has great compassion for the families of pediatric patients, as well as the patients themselves.

This compassion serves her well on the steering committee of Anderson Network, where she represents the parents of pediatric patients. She recalls that when a longtime friend who is a pediatric nurse saw her soon after Addison's diagnosis, she hugged Marshall and said, "Addy will be fine, but you will never be the same."

Survivor emphasizes humanity of fellow patients
From the moment he arrived at MD Anderson, Tom Touzel showed the tenacity he brings to advocacy for bladder cancer patients.

After receiving his diagnosis -- and a poor prognosis --  he spent many hours doing online research into bladder cancer. He determined that Colin Dinney, M.D., was the physician he needed to see.

But when he arrived at MD Anderson, he was told that Dinney, professor and chair of the Department of Urology, was no longer taking new patients.

Touzel's response was characteristically forthright. "I said, 'This is a cancer center. I have a feeling he's going to have an opening. I'll wait,'" he recalls with a laugh.

And wait he did, all day and part of the next. Eventually, Dinney came out to speak to him. He said, "I understand you're quite persistent."

Touzel shrugged and said, "I guess so."

Though neither could have predicted it, it was the beginning of a mutually beneficial partnership.

After his treatment ended in 2006, Dinney invited Touzel to become a patient advocate for a Specialized Programs of Research Excellence (SPORE) grant in bladder cancer.

Patient advocates are essential members of the research team on these multimillion-dollar federal grants, bringing the patient's voice and perspective. Touzel, who judges national dog shows for a living, even established a second home in Houston to make it easier to be near MD Anderson for appointments and volunteering.

"I still don't know nearly as much as I should know," he says. He also volunteers several days a week in the Genitourinary Center, speaking to patients who have questions about the effects of treatment.

Ask your doctor any question, he urges them. They're obligated to answer it.

He's even done training sessions with medical staff. "Even if they're researchers who'll be in the lab, I want them to remember one thing," he says. "We patients are grateful to them. We're happy to be walking, talking, living. But remember to look us in the eyes, make us human. Because that's what we are."

He says he promised Dinney he would give him three years' of work on the SPORE grant and in the clinic, but he's stayed much longer. "As long as they want me and they feel I'm contributing, I'll be there," he says.

'Sometimes the caregiver needs the success story'
Hans Rueffert, chef and contestant on the first season of "The Next Food Network Star," got involved with the San Francisco-based Gastric Cancer Fund (GCF) shortly after his diagnosis with the disease in 2005.

Rueffert's wife, Amy, found the group online when she was doing research into his gastric cancer, and urged him to contact founder J.P. Gallagher to see if the group needed help.

Read the rest of this story, plus much more, in the spring issue of Network magazine.

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