Campfires of Hope

When Dr. Amy Rothenberg, a breast and #ovariancancer survivor, finished #chemotherapy in 2015, she pledged to do a sprint triathlon with her entire family just six months later. To this day, she still completes at least one each year. She focuses on regular exercise, eating an anti-inflammatory diet, working on her “head game," and being outdoors, enjoying nature as much as possible.

Her advice to a #cancersurvivor trying to incorporate such approaches into their lifestyle:

Available where you listen to podcasts.

Asa Newell was diagnosed with testicular cancer in 2020 when he was 17 years old. In response, he thought, “I can either curl up in a corner or I can be the most positive person I can be.” He chose the latter.

Asa details the challenges of being in high school as a young adult cancer survivor, primarily how others his age didn’t always know how to react when they found out about his cancer. Staying true to his mantra of being positive, Asa now sees how being diagnosed so young helped him grow up faster than most since he had to grapple with questions like "Are you okay with dying?"--something kids his age typically don’t think about.

In 2022, Asa found Epic Experience through the Testicular Cancer Society. After meeting other TC survivors with successful lives and stories of perseverance, Asa understood the true potential of living beyond cancer. He left camp with the realization that “to be the person you want to become, you have to say yes to every opportunity that comes your way.”

Asa’s advice to cancer survivors is “No matter how hard it gets, never give up. Get up out of bed and take your first steps of the day. Those are the most important steps of the day. Don’t be afraid to fail in anything. That’s your first step towards success everyday.”

Nancy Ferro, a.k.a. Mama Lou, founded Epic Experience after her son Michael was diagnosed with testicular cancer. She joins the Campfires of Hope podcast to share her experience as a caregiver and mother of a adult child with cancer. Mama Lou details how she coped and provided support despite being told by Michael, “I have cancer and we’re not going to cry about it.” Cancer affects the entire family, and Mama Lou describes how each family member handled the experience and the sacrifices they made to support one another.

Mama Lou’s advice to other caregivers is to “be present as best you can.”

Missy Burgess was diagnosed with breast cancer in 2020, during the height of the COVID pandemic. As a result, she spent many months physically isolated from others and had to get creative about finding support in her medical team, online cancer survivorship meetups like Epic Experience’s Campfire Chats, and Facetiming with her friends. Missy details how she was able to take advantage of her extra independent time to keep a positive mindset despite dealing with a cancer diagnosis during a time of isolation.

Just as Edie “Blaze” Harrison was feeling as fit and healthy as ever, she tested positive on her Cologuard at-home colorectal cancer screening. In March of 2021, she was diagnosed with rectal cancer. Blaze went through chemo, radiation, and surgery before she was declared NED in January 2022. 

Despite a clean bill of health and a positive outlook on life, she was still new to the process of being a survivor. After finding Epic Experience via a Google search, she attended a regional meetup in Pennsylvania. A year later, she attended Epic’s weeklong winter camp in the Rocky Mountains. It was there that she truly found community, understanding, and validation among other cancer survivors. She also rediscovered her physical strength, after being unsure if she could keep up with the demands of camp activities like snowshoeing. 

Asked what advice she would give to others, Blaze emphatically says, “Get your scopes, people! Screens are a bother but not as bad as going through cancer treatment. Catch it early!”

At first, Denny “Stretch” Williams chalked up his abdomen pain to a muscle strain. But the pain worsened over the next few months, and in January of 2022, Stretch was diagnosed with esophageal cancer. Though difficult, Stretch and his wife were up front with their two teenagers and kept them in the loop each step of the way.

After five rounds of chemo and 28 radiation treatments, Stretch was declared NED, no evidence of disease, in the summer of 2022. Despite being free of cancer, however, his survivorship was just beginning. Scanxiety, survivor’s guilt, and even anger filled his thoughts. In March 2023, Stretch attended an Epic Experience winter camp and learned to take things less seriously, be free, and “just show up and live.” His advice, especially to male cancer survivors, is that it’s okay to reach out for help and to prioritize your mental health during the cancer journey.

Mike Craycraft is a testicular cancer survivor and founder of the Testicular Cancer Society. In 2006, Mike felt a lump and knew it was cancer. He decided not to go to the doctor or tell anyone about it, and instead opted to live like he was dying. He even went so far as to throw his own “going away” party. 

After living with cancer in the shadows for seven months, he finally went to the doctor where his cancer was confirmed. Once diagnosed, treated, and put on active surveillance, Mike flipped a switch and decided to embrace his cancer publicly. When he discovered a lack of support groups available for testicular, young adult, and adolescent cancer survivors, he took action and founded the Testicular Cancer Society in 2008. Through Mike’s efforts at his nonprofit, TC survivors now have quality access to education, care, and support.  

In 2022, Mike was the driving force behind organizing Epic Experience’s first ever TC camp. For all that he’s done for TC survivors and the larger cancer community, Mike has been selected by Epic Experience as the recipient of the 2023 Epic Hero Award.

In 2010, Lee Walinchus took on a new role in addition to husband and father. After his wife, Mary, was diagnosed with cancer and started an intense chemotherapy regimen, Lee became chief caregiver to his wife and their three young daughters. The family was blessed with a helpful community, and Lee also took charge of coordinating the support efforts. To automate communications with others and process his own emotions, Lee started a blog that was both informative and humorous. His advice to caregivers is to take time for yourself, have a social outlet, and find a way to maintain some normalcy.

On this episode of Campfires of Hope: Living Beyond Cancer, we sit down with Jackie Wesley, the founder and executive director of Fighting Together to Save Lives. Jackie is a uterine and breast cancer survivor who was first diagnosed in 2003.

Jackie’s cancer journey inspired her to become a cancer advocate, especially to the African-American community. She discusses the challenges of providing equitable care and the importance of coming together to provide education and support to all communities. Jackie’s mission is to share her story, teach other survivors how to fight, and encourage people to get tested for cancer early and often.

Megan Clifford, a.k.a. Disney, was diagnosed with stage 4 Hodgkin's lymphoma when she was just 11 years old. Being diagnosed at such a young age, she often struggled to relate to her peers, find social support, and develop her own identity and voice.

Once she reached her 20s, Disney took it upon herself to seek out support and found Epic Experience. At camp, she realized that she needed a community that understood what she had endured in her childhood years. Cancer has now been a part of her life for over 20 years, and Disney has taken those personal experiences and transformed them into a career in the oncology industry.