Originally published in the Spring 2019 issue of Act Against Cancer.
When Jason Pedwaydon lost his mother to cancer, his life took a turn.
“I was just lost,” he recalls. “I didn’t know what to do, so I turned to fitness and found some relief.”
Mr. Pedwaydon hails from a family of athletes and had long been active in sports, but his grieving process prompted a shift in focus, from competition to fitness: endurance, strength, flexibility, cardiorespiratory health and body composition. The release it provided was powerful, and he also was building his own resilience — a sense of strength that would serve him well years later when he was diagnosed with lymphoma in his early 40s.
“I had been prepping my body that whole time,” Mr. Pedwaydon recalls. “My doctors were encouraging, telling me that I was sitting in a really good position because I was physically fit. That was the first spark in the fire, that there is a connection between fitness and cancer.”
That initial spark launched his personal journey to learn more about the link between fitness training and cancer survivorship. He devoured any information he could find — and this quest for knowledge laid a foundation that prepared him for his life’s next turn.
“Little did I know I would have the opportunity to help people going through something similar to what I went through,” he says. “I was in remission for two years and that’s when I came in contact with Brenda Charley.”
First of its kind
A sedentary lifestyle increases risk of cancer and makes the disease more likely to come back. The flip side is that getting active might reduce cancer recurrence and improve quality of life — and make the side effects of treatment less severe. Having cancer doesn’t have to stop someone from enjoying a healthy and fulfilling life, and physical activity can be a part of that.
Native Americans have the lowest five-year cancer survival rates of any U.S. population. Jennifer Bea, PhD, associate professor at the University of Arizona College of Medicine – Tucson, hopes to improve those statistics with Restoring Balance, a program tailored for a Native population that meets standards set by the American College of Sports Medicine (ACSM): 150 minutes of moderate, or 75 minutes of vigorous, aerobic activity per week, and two days per week of moderate- to high-intensity resistance exercise plus flexibility exercises for all major muscle groups. Dr. Bea, along with Dirk de Heer, PhD, MPH, and Anna Schwartz, PhD, of Northern Arizona University, operates this project through the Partnership for Native American Cancer Prevention (NACP), a collaboration between the UA Cancer Center and NAU.
“Exercise can be very restorative, helping to right the ship,” Dr. Bea says. “Squeezing in physical activity can help improve survivors’ quality of life while they are trying to get their life back after treatment.”
“Exercise is so important to their survivorship,” adds Brenda Charley, MS, a certified exercise physiologist and NAU program coordinator for Restoring Balance. “We want to make exercise a part of their treatment.”
No one has studied the effect of exercise on cancer survivorship in Native populations — until now. Since receiving funding in 2014, the Restoring Balance team has been reaching cancer survivors in Northern Arizona tribal communities, while helping to fill a huge gap in medical research.
“So far, the literature mostly represents white Americans,” Dr. Bea says. “We’re striving for the ACSM guidelines, but also trying to adapt the Western ways to the tribal community. We’re attempting to meet people where they are — physically, culturally and clinically.”
The program serves tribal communities in Northern Arizona, with hopes to expand across the state. Native personal trainers work with cancer survivors at the Native Americans for Community Action Wellness Center in Flagstaff, the Hózhóógo Iiná Wellness Center in Winslow and the Leupp Chapter House on the Navajo Nation. Material has been vetted by cultural experts from 10 tribal backgrounds, who scrutinized everything from colors to symbolism to clarity. Through feedback from participants, Restoring Balance constantly is being fine-tuned.
“We’ve had a few hiccups and we’re learning from them,” Ms. Charley says, “but I think the effect on survivors has been mainly positive. There’s a lot of gratitude coming from the participants, and a lot of pride coming from the trainers.”
Tradition and training
One of the most important aspects of Restoring Balance is that it is delivered to cancer survivors by Native trainers. Mr. Pedwaydon is one of those trainers. Originally from Detroit and of Chippewa, Ottawa, Delaware and Mohican heritage, marriage brought him to a remote part of the Navajo Nation called Big Mountain.
“When we get diagnosed with this awful disease, we stand up and we fight!”
Word of mouth connected him to Ms. Charley, who recognized the talents he could bring to the table. Twice a week, Mr. Pedwaydon makes the nearly two-hour trek down to Leupp with items such as mats, weights and steps in tow. He draws from his own culture and past battle with cancer to motivate survivors.
“When we get diagnosed with this awful disease, we stand up and we fight! I tell my participants one of the ways we’re going to fight is through exercise. I believe it, having gone through it,” Mr. Pedwaydon says. “If you’re down in the dumps — and cancer does a mind job on people like nothing I’ve ever seen — achieving goals helps you realize you are resilient.”
Cultural understanding helps trainers form effective coaching relationships with participants.
“If you understand the lifestyle, you’ll be more understanding and more patient,” Ms. Charley says. “If they are traditional, ceremonies always take precedence. You have to be flexible if they don’t show up to an appointment because they had a last-minute prayer done. They are trying not only to be reverent to their spiritual practices, but also to lead a healthy life.”
All Restoring Balance trainers are working toward ACSM certification, with additional specialization in serving cancer survivors. Optimally, participants visit a trainer once a week, receiving a mega-dose of inspiration, along with an exercise plan to sustain them through the week. Giving participants the tools they need to take their health into their own hands can be empowering.
“We can’t do the work for them,” Ms. Charley says. “We give them the program, we coach them if they’re having trouble, but in the end, it’s all their work.”
The program’s name, Restoring Balance, came out of focus groups with Navajo people.
“Balance was a concept that kept coming up,” Ms. Charley says. “A lot of our participants would go to medicine men, and these medicine men would tell them something was not quite in balance.”
“The way a Native understands chemotherapy is that this drug is going to come into your system to help you fight cancer, yet it causes a disruption,” adds co-investigator Etta Yazzie, RN, UA Cancer Center research nurse and an infusion nurse at Arizona Oncology Associates in Flagstaff. “For a cancer survivor to get their energy back, they need to get the body moving. It is understood in Navajo that to restore balance is to restore hózhó. Your body restores hózhó with the mind, soul and spirit, and with the elements of nature, with the universe and with family.”
Every participant receives a free water bottle, one of the incentive items that was inspired by the ongoing dialogue between the community and the program. Most Navajo ceremonies and traditional dances include prayers for water, which represent a celebration of life for all living things on Earth.
“In all Native cultures, water is important. It is sacred,” Ms. Yazzie says. “Most healing ceremonies use water. Water has life in itself and allows the songs and prayers to come to it. When you drink it, that healing and spiritual meaning can flow through your veins and open up channels so you can be reconnected to the spiritual and healing energies.”
Restoring Balance needs to be flexible enough to include both the exercise regimen and important ceremonies. That includes making sure schedules don’t adhere too strictly to the Western calendar.
“The Navajo and the Hopi understand and go by the moon cycle,” Ms. Yazzie explains. “Each moon cycle has a purpose. When the moon changes, ceremonial dances or healing ceremonies are set to take place. The schedule has to allow for that.”
Mr. Pedwaydon adjusts terminology, citing an exercise called “hot foot,” which involves standing on one foot and jumping front, back, left and right. He invokes the concept of the medicine wheel, a circle divided into quadrants representing the four directions — east, south, west and north.
“The medicine wheel is a symbol that’s pretty universal throughout Indian Country,” he explains. “Instead of calling it hot foot, I say, ‘We’re going to jump in the four directions.’ If you can implement little things like that to help make it relatable to our cultures, that helps encourage them.”
Exercises also need to respect cultural norms regarding personal space and modesty. Ideas about “crossing over,” considered a rude intrusion into one’s aura, may influence how trainers interact with participants. One exercise, which originally had participants lifting their legs into the air from a position on the floor, was considered immodest by many women, and was reformulated for a sitting position.
Beyond the gym
Restoring Balance meets people where they are not just by working to ensure the program is culturally adapted, but also by reaching out to residents of rural communities. Travel can be difficult when someone is recovering from cancer treatments — especially for people from small communities outside the orbit of Tucson and Phoenix.
“If you’ve just been through treatments, distance becomes an even bigger issue,” Dr. Bea says. “You need to be able to meter out your energy for the fundamental activities of living.”
Nature is an option too often overlooked by Western exercise regimens that assume access to — and a preference for — gym equipment.
“A lot of rural Native people don’t go to gyms,” Ms. Yazzie says, recalling feedback from focus groups. “We talked about getting treadmills, and they said, ‘You may buy the treadmill, but it’ll just be sitting there. We’re used to walking on the earth. We’re used to working with livestock. Maybe the young people will use it, but older people would probably just look at it and take a walk.’ So, we had to cross that out.”
“Communing with nature can be an important piece of recovery,” adds Dr. Bea. “A lot of folks like to walk or run — that’s a long-standing tradition, to rise before the sun and walk or run.”
In addition to understanding the culture, trainers need to understand cancer care.
“If somebody has radiation or chemotherapy on Monday, how are they going to feel the next day? How do you coach them so that they can get back to exercising by Thursday or Friday?” Ms. Charley asks. “It takes a special person to understand the way those things work.”
Dr. Bea is excited that Restoring Balance won’t just help cancer survivors in the short term — the NACP’s overarching goal is to recruit more Natives into biomedical research and health-care professions, equipping them to lead their own research projects and develop a more culturally competent workforce.
“Instead of us running everything as university employees, we are empowering the community trainers and federally recognized centers to deliver the exercise program and to really own the research,” Dr. Bea says. “It sets them up for running their own research projects in the future.”
Involving people from the community is crucial to the program’s success.
“Etta is Navajo, Brenda is Navajo. You have to have folks who are part of the community,” Dr. Bea says. “If you’re going to show up at a ceremony, you may need to be Native. You need to understand what might be open, what might be closed and when you need to bring gifts. Those are important things about respecting the culture, which no outsider can do as effectively as a Native person.”
And by helping trainers obtain ACSM certification, everyone in the community benefits. ACSM-certified trainers with specialization in cancer exercise are rare in Arizona, especially in rural communities.
“We are taking people from each of the communities and making sure they have the expertise,” Ms. Charley says. “When the research project leaves, that expertise stays in the community.”
Restoring Balance has attracted fitness enthusiasts who want to serve their people.
“I love to exercise, I love fitness and health, and I get to work on that every single day,” Ms. Charley says. “I’ve always wanted to get into research, but I didn’t know how, especially in a small town like Flagstaff.”
“I have the opportunity to do something I love — fitness — to help fight something that I despise — cancer,” adds Mr. Pedwaydon. “This is tailor-made for me.”
Being able to follow these passions while staying in their communities helps bring a sense of wholeness to their lives.
“It’s good for Indians to occupy their native lands. It’s difficult and it poses its challenges, but it’s very rewarding, unlike anything that you can find, feel or obtain in the city,” Mr. Pedwaydon says. “It’s really a blessing to have such an opportunity. All aspects of it are a win-win-win-win all the way around.”
“I’m so grateful that I get to take care of my family, I get to take care of my community, and I still get to have a good job,” Ms. Charley adds. “It’s a really awesome balance.”
Restoring Balance is supported in part by the National Institutes of Health NCI grant U54 CA143925-06 and is approved by oversight committees at the University of Arizona, Northern Arizona University and the Navajo Nation Human Research Review Board (NNHRRB No. NNR14.192).