Clearing the five-year mark can seem like an invisible finish line in a contest that many cancer patients feel is the race of their lives. Cindy May, owner of Cindy May Marketing in Flagstaff, crossed that line in March. “Cancer changed me,” she said. “Through my journey, it caused me to take a step back. I always realized that family, friends and work are all important, but I feel it on a much deeper level now.”
May serves on the board of the newly-formed Flagstaff committee of the Cancer Support Community Arizona (CSCAZ), answering the call from statewide organizers to help with local connections. The organization has existed in Phoenix for 20 years and is the only one in the state that provides complimentary, year-round emotional, nutritional and educational support for anyone impacted by cancer. But, until now, there has not been a one-stop shop for comprehensive resources in the Flagstaff area.
“It was wonderful having the support and love of the doctors around me,” recalled May, who was diagnosed and treated for breast cancer in 2014, “but once I was walking out of the chemo room, that’s when the battle started in my head. I wasn’t sure how to support my children and my husband on an emotional level. It was kind of like hunting through information to see what I could find and not knowing what I needed.”
May reached out to Heidi Hansen, City of Flagstaff economic vitality director, to join the board as well. “I have had several friends who have had cancer and been able to beat it, but most recently, I lost a friend to her battle. It really touched home and made me more interested than ever to make this horrible disease something that no person or family has to tackle on their own. Having assistance in Flagstaff is so very important, and knowing the money raised will always stay local is the main objective for me.”
The Flagstaff organization is coming together under the leadership of psychologist and two-time cancer survivor Sandi Ernst Perez, Ph.D. Networking with support services is underway and a series of public health lifestyle programs are beginning this month. The group is also connecting cancer patients and families to activities that keep minds busy and lives normal. Ultimately, Perez says, the group is seeking a brick and mortar location — a home where those dealing with cancer can experience warmth, information and support of all kinds under one roof.
“I was so lucky,” said Perez, who discovered a tiny sore on her head at the edge of her hairline 14 years ago. Innocuous as it seemed, the small tender bump revealed Stage 4 metastatic melanoma. “I was healthy, had no symptoms, didn’t feel sick and was absolutely stunned.”
Treatment was aggressive and immediate for the former competitive swimmer and lifeguard who had enjoyed an active, outdoor lifestyle and a full, busy life. “I had two kids and a great job at a non-profit. Cancer was not part of my plans. Had it not been found, I probably would not have survived the year.”
Eight years later, cancer struck again. “Melanoma is a sneaky thing. It can go anywhere. It can be in between your toes, in your eyes, in soft tissue.”
This time, Perez was very sick. She learned the tumor was in her intestines. “I feel so fortunate that I have a strong constitution, I have a really positive personality by nature. Because I’m a psychologist, I used the tools that I taught other people to use when they were facing really serious life-changing circumstances. I got a good therapist, put together a team, asked questions and made the best decisions with my husband that I could make at the time.”
Perez and her doctors incorporated Western medicine and holistic therapy, including immunotherapy, visualization, radiation, surgery and medication. “All those things made a difference in my recovery both times.”
Today, she and her husband, Jon, are thrilled to relocate to Flagstaff from Phoenix, where she is serving as vice president of Northern Arizona Cancer Support Community.
“Sandi brings with her a wealth of experience creating and managing successful initiatives promoting health and community throughout Arizona,” said CSCAZ CEO Debbie DiCarlo. “She’s done therapeutic work with the White Mountain Apache Tribe and has led organizations such as Delta Dental of Arizona Foundation. Perhaps most importantly, because of her own experience with cancer, she passionately believes that all families deserve access to quality professional care.”
At the core of CSCAZ’s work is a series of free programs that focus on five interconnected elements to help those facing cancer: emotional support, health and nutrition, education, social engagement, and resources and referrals to bring awareness of community resources to patients and their caregivers.
“Working together, we can make a difference and strengthen an already incredible Northern Arizona community,” said Perez. “I am honored to open the doors of the first Cancer Support Community Arizona outside of Maricopa County.
DiCarlo, who became CEO after losing a dear friend to the disease, learned about Cancer Support Community Arizona while her friend sought treatment.
DiCarlo says the organization spent a year-and-a-half meeting with cancer patients, caregivers and healthcare professionals in Flagstaff. “One thing is clear: there’s definitely a need for comprehensive, free, professional services in Northern Arizona. A cancer diagnosis is overwhelming. Individuals and families need the right information at the right time to navigate the process.”
She says everything CSCAZ does is backed by evidence-based research. “We truly directly partner with the medical community and academic research community with critical research behind the services we provide. A cancer diagnosis upends a family’s world. They learn how to change eating and lifestyle habits in a way that empowers them. We don’t say, ‘You should do this.’ Instead, we’ll say, ‘Evidence has shown that when you are able to add more fruits and vegetables in a diet, life spans can be increased,’ for example. Anything the patient and the family can do to understand and participate in disease management makes a huge difference in the outcome.”
Promoting healthy lifestyles can include yoga or cooking classes, she adds. “Whatever a patient or family member can do to decrease stress and anxiety can decrease conditions like inflammation in the body.”
The organization also works to battle unwanted isolation. It organizes events and finds resources to fund activities, like plays and sporting events, that may not be in the family budget while a member is going through treatment. As a referral center, CSCAZ guides patients and families to resources that can help them navigate health insurance policies or learn how to care for wigs.
“Our motto is remove as many barriers for participation as possible, at no charge,” said Perez. “It’s a club we didn’t sign up to be a member of, but we know what the power of community – sharing our stories and getting ideas, hope and inspiration from each other – can do for the spirit, soul and immune system. It boosts all of those things. That’s why I’m passionate about it.”
In Phoenix, the programs provided by CSCAZ are housed in the historic Ina Levine House, a 3,000-square-foot estate that serves as the nexus for the community. The long-term goal for Northern Arizona is to find a similar location. “We’ll keep looking until we find a great place,” said Perez.
In the meantime, CSCAZ is partnering with other community organizations and educational institutions, including Native Americans for Community Action and Coconino Community College, which provide programs at their sites.
Joining Perez, DiCarlo, May and Hansen to drive the expansion into Northern Arizona is Museum of Northern Arizona Development Director Liz McGinlay.
“My life is busy, my business is busy, I’m on different boards. This is not just service on a board level to help them get started, but a personal issue to me,” said May. “To have all those daily life answers in one safe place, I am all in.” FBN
By Bonnie Stevens, FBN
For more information, visit cscaz.org.