Rough and Tumble Recovery

Heal, Summer 2008, Volume 2, Issue 2

The physical & personal challenges of adventure healing can help patients & survivors regain a sense of 'self.'

Brock Royer arrived at First Descents kayak camp in 2002 as a 22-year-old, happy-go-lucky kayak racing champ who wanted to share his skill at running river rapids with young adult cancer survivors — to provide thrills and healing lessons. Three years later Royer learned he had testicular cancer and morphed in a life-changing instant from camp counselor to scared student.

“At first I was volunteering because I liked kayaking and the kids,” he says, adding that after the diagnosis, First Descents took on a whole new meaning — not just for him, but for his “kids,” too. Because as cool as it may have been before his diagnosis for First Descents campers to learn to kayak from a pro racer, now they found themselves sharing with Royer personal information beyond blood counts and hair loss, toward bigger questions about life. Royer was no longer “just a counselor.” Now he understood, campers told him, what it felt like to have cancer in his body; he was one of them.

Founded in 2000 by pro kayaker Brad Ludden, then just 19, First Descents (www.firstdescents.org) uses white-water kayaking and other outdoor adventure sports to promote psychological and physical healing for young adults with cancer.

The free, nonprofit program has swelled from a single camp some 45 miles from Vail, Colo., to its current slate of nine camps per summer in Colorado, Montana, Wyoming, Idaho and California, where more than 150 cancer patients and survivors ages 18 to 39 challenge themselves physically and emotionally during the six-day experience. (Travel scholarships are available.)

First Descents uses the beauty and healing properties of the outdoors to give participants their lives back and help them realize that, while cancer is a part of their life, it does not define them, says executive director Allan Goldberg.

Goldberg, 40, should know. At 12 he was diagnosed with rhabdomyosarcoma.

Those who apply for the First Descents experience submit a medical form from their physician, but being in treatment doesn’t keep them from being accepted, Goldberg says, adding that participants represent every stage of treatment, and all camps have medical personnel onsite.

Indeed, this summer’s campers include an 18-year-old who has Ewing’s sarcoma and a 37-year-old who is two years out from breast cancer treatment.

Campers kayak, hike, climb and take part in “spirit” (chat) sessions, Goldberg says, adding that all levels of athletic ability are welcome.

Royer says when campers get to “graduation day,” the rush of the water in their ears has drowned out much of “the stuff” that has been with them — concerns about family or a growing tumor. Royer, who has undergone three surgeries, says it’s hard to focus on those issues when facing class 2 or 3 rapids.

In the annals of cancer survivorship, the emerging field of adventure healing, or adventure therapy, has begun to take hold. According to the Lance Armstrong Foundation, of the 10.5 million cancer survivors in the U.S. today, more than 500,000 are ages 15 to 40, the prime target for adventure therapy and a long-underserved population when it comes to needs related to their cancers.

Today, numerous national oncology retreats and camps court hundreds of cancer survivors each year, many of whom are seeking new, and increasingly challenging, post-treatment adventures.

Payoff for the campers, while difficult to document, includes new confidence and friendships that last for years, as well as concrete healing strategies for beleaguered souls or fractured body images.

According to Marc Slatkoff, MD, medical director of First Descents, as campers surmount obstacles at retreats — whether fear of climbing a vertical wall or piloting a single-person boat through the rapids, “they learn they are capable of overcoming these obstacles. Just as they’ve had to do in life. You come out the other end more ‘whole.’ ”

In a study published in the Journal of Experiential Education in 2005, Deborah Sugerman, PhD, found that adventure programs brought survivors renewed self-worth, feelings of support and a sense of control. But to the alumni of these retreats, the nomenclature matters far less than the shared experiences, Goldberg says.

A key goal, he says, is to help survivors regain trust in their bodies — after feeling that these same bodies have let them down. In addition, when someone is

newly diagnosed, he or she may feel weak or damaged, says Goldberg, and conquering a class 3 rapid “gives them that ‘a-ha’ moment.”

Growing along with the adventure therapy camps are other nature retreats that also take advantage of gathering in a beautiful locale to talk, bond and, in some way, be physical.

“It’s such a healing area; so powerful,” says Judi Janowski, 59, a breast cancer survivor, former camper and now retreat director of Infinite Boundaries (www.bcrf.org/infiniteboundaries/) retreats for women with breast cancer, a program that celebrates its 10th anniversary this summer.

Janowski took part in the Wisconsin-based retreat on Madeline Island in Lake Superior at age 50, soon after her treatment for her stage 2 disease.

“The reality of breast cancer is that there is no real cure,” offers Janowski. “You can be N.E.D. [no evidence of disease] for years and still develop a recurrence.”

Janowski says all she could think about were her two sons, ages 10 and 12 at the time of her diagnosis. “I consider myself an upbeat individual — energetic and pretty proactive,” Janowski adds, “but before I got to Madeline Island, I was out of control and hitting a brick wall.”

Janowski says what she learned during the retreat was that a person can be healed and not be cured. She recalls that multiple aspects of the trip were vital to her healing process, from taking the ferry alone without friends or family to Madeline Island, to mingling with other middle-aged survivors and trying such activities as still-water kayaking, a ropes course and island hikes that “leave the mainland behind.”

Janowski says she had a breakthrough on Madeline Island.

“It was the first place and the first time I could talk about my fear of dying.”

She says her husband couldn’t handle the worst-case scenario discussion, and neither could her friends. “There’s a big risk involved, emotionally,” she says. “And I really needed to talk about my fear of dying.”

Janowski says she can remember the tears and the feeling of liberation that came from being able to address the issue in a safe space.

In 2008 Infinite Boundaries retreats are being held through the end of October at centers in Wisconsin and Minnesota, where women will take part in discussion groups, creative arts and low-impact outdoor activities. Women ages 24 to 74 have attended the retreats, which cost $300 (but no woman is turned away due to lack of funds, says Janowski).

Infinite Boundaries also has created retreats specifically for young survivors and for those going through cancer alone.

As a 20-year survivor of Hodgkin’s lymphoma, Brad Zebrack, PhD, an assistant professor at the University of Southern California School of Social Work, understands the initial isolation and lingering effects that so many survivors experience — even when the “worst” is supposed to be over.

While studying cancer’s impact on survivors and their families, Zebrack says, he has been surprised time and again by the intensity of some of his subjects’ isolation — and by the potential healing effects of survivor-oriented retreats. Zebrack serves as an adviser to Camp Mak-a-Dream in Missoula, Mont., a medically supervised, free camp for children, teens and young adults with cancer and their siblings (www.campdream.org).

“The most valuable aspect of these camps, I think, is that many of these kids arrive feeling alone. They come after a stretch in life where they couldn’t go out on a Friday night, or it’s, ‘Friends don’t call me anymore.’ ”

The camp experience diminishes this sense of isolation, Zebrack says, adding that it can also leave campers feeling better about their bodies. “They learn, in short, to cope with serious psychological issues through teamwork, trust and shared challenges,” he says.

During their stay at Camp Mak-a-Dream, which has had 43,000 patients and family members visit since it opened on 87 sprawling acres in 1991, children and young adult campers ride horses, hike, swim and test their mettle on a ropes course strung nearly 40 feet above the ground. The campers attend small-group chat sessions and cancer-focused seminars in afternoons and evenings.

For many young adults, dealing with cancer in their 20s or 30s — in large part alone — can have lifelong debilitating effects.

“It’s a time in your life when you’re trying to establish your identity,” Zebrack says, “who you are, and who you want to be. So if cancer isolates you for an extended period of time, you’re not out there in the world, not engaging.”

Zebrack says he will talk about these camps with other professionals and get back comments such as, “Oh, it’s really nice.”

“I put it back out there: ‘It’s more than nice. It’s really critical to have these opportunities for survivors to interact socially during their teen and adult years.’ ”

[Young adulthood] is a time in your life when you're trying to establish your identity, who you are, and who you want to be. So if cancer isolates you for an extended period of time, you're not out there in the world, not engaging.

Today, numerous national oncology retreats and camps court hundreds of survivors each year, many of whom are seeking new, and increasingly challenging, post-treatment adventures.