Fiddler Climbed a Mountain, Came Down the Other Side
May 19, 2017
“There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Sometimes I'm gonna have to lose.”
Flat on her back on her bed in IU Health Simon Cancer Center, Charlette Jones sings the words to Miley Cyrus’ country pop ballad, “The Climb.” The song describes a difficult journey. And by Jones’ side sits someone who knows about that journey, someone who has climbed that mountain and is headed down the other side.
Emily Caudill was just 25 when she faced one of the slowest and yet fastest weeks of her life that would result in an uphill battle fighting ovarian cancer. Often called the “silent killer,” because it is somewhat of an artful dodger during detection, ovarian cancer is one of the most deadly cancers in women. The American Cancer Society reports only 20-30 percent of women diagnosed with late stage ovarian cancer are alive five years later. So Caudill is something of an anomaly.
A Bike Wreck May Have Saved Her
In 2011 just three months before a bike wreck, Caudill had a normal OB/GYN exam. “After the wreck, I wasn’t healing and I was having a lot of bleeding. I’d had ovarian cysts before so I didn’t think much of it,” said Caudill. She made an ER visit on Sunday, then to her OB/GYN on Monday and later that same day, she was sitting in the office of a gynecological oncologist in Louisville, close to her home at the time.
“I had fluid on my belly and I could barely breathe,” she recalls. And just like that, she was admitted to the hospital on Friday. The diagnosis was cancer. Two days later she was in surgery. She remained hospitalized for two weeks and when she was strong enough, she had her first dose of chemo.
After eight months of remission, the cancer relapsed in August of 2012 and spread to her liver. That’s when she became connected with IU Health Simon Cancer Center, undergoing bridge chemo. On Halloween she was admitted to the bone marrow transplant unit.
"I had germ cell tumors, which cause testicular cancer in men. It's an extremely rare type of cancer for women to develop. My doctor in Louisville said that an autologous bone marrow transplant would be my best shot for survival. We looked at cancer centers nationwide and found that the best place to go was actually just a few miles up the road, at IU Health Simon Cancer Center in Indianapolis,” said Caudill. Doctors Rafat M. Abonour and Robert P. Nelson were her Bone Marrow Transplant Hematology/Oncology team.
“I kept a little travel size guitar in my room for friends to play when they came to visit me. Dr. Nelson would also play the guitar while he was giving me reports day-to-day,” Caudill recalls.
“And Dr. Lawrence Einhorn and his team at IU Health pioneered the development of a life-saving treatment regimen for testicular germ cell tumors, dramatically improving the cure rate,” said Caudill.
But complications continued. First her liver failed and then her kidneys. Caudill was put on dialysis. The dialysis caused her blood pressure to spike resulting in a stroke. “My body started shutting down,” she recalled. The stroke and brain swelling caused confusion, diminished awareness, and rendered her incapable of communicating.
That was when her aunt began playing the bluesy song, “Salt” by Kentucky-based artist Justin Lewis. Caudill’s family members and nurses couldn’t believe what happened next. Caudill began to sing along. “Music is what brought me back,” said Caudill, who majored in music therapy at the University of Louisville.
The Rhythm of Life
Caudill comes from a family of singers. Her earliest memories of music involve singing hymns at The Macedonia Old Regular Baptist Church in Breathitt County Kentucky – the foothills of the Appalachian Mountains. Her great-grandparents were the founding members of the church and her great-grandfather led the singing. Musical instruments were prohibited in the church.
“I learned a lot of folk and fiddle music of the region by aural tradition (music captured by ear),” said Caudill. “My parents would take me to folk music festivals and fiddle contests, where I'd listen to other people playing tunes I didn't know. Then I'd just noodle around for awhile until my fingers figured out how to replicate that melody.” It was her grandfather who encouraged her to play the fiddle at age eight. By age 10 she could play, “Amazing Grace,” a hymn she recently played as a parting gift at her grandfather’s graveside.
But at the bedside of Charlotte Jones, Caudill recently picked a tune she hadn’t rehearsed. In the same unit where she was once a patient, Caudill found herself “noodling” out a request by Jones – the Miley Cyrus song, “The Climb.” She entered the room entertaining requests and Jones was ready.
“This song is inspirational, it’s emotional and it’s uplifting,” said Jones who is undergoing chemotherapy for lymphoma. “This tells me a lot about your resilience. You are going to keep on going and keep climbing that mountain,” said Caudill.
She Hadn’t Reached the Summit
Music brought her back from a stroke, but Caudill still wasn’t out of the clear. She still had a mountain to climb. In March 2013, the cancer still appeared to be active, but more chemo could kill her. The only option was a second-look surgery. The surgeons removed her gall bladder and 40% of her liver. Two weeks later, she was told the cancer was invisible. “The diseased tissue that appeared to be active on PET and CT scans was actually dead. In the words of the doctor, it was ‘pretty much a miracle,’” Caudill recalls.
But there was also bad news. The chemo caused a significant hearing impairment. It was a mentor – Louisville fiddler Jeff Guernsey who coaxed Caudill to keep up with her music, even if it was just a few minutes every day.
"In a lot of ways, it was like my life had hit the reset button. I had to re-learn how to do basic things like walk up a flight of stairs,” said Caudill. When she left University Hospital, Caudill moved in with her grandparents. "My grandfather installed ropes on the staircase in their house, so I could pull myself up the steps."
It was a long road to recovery. When she first came home from the hospital, she was too weak to even unscrew the top off a bottle of water, let alone stand and hold her fiddle.
Over time, she built up her strength and was fitted for hearing aids. A friend suggested that she reimagine her relationship with sounds as vibrations felt, rather than noises heard. Caudill learned how to tune her violin by feeling the notes oscillating through her jawbone, which was transmitting the sound to her inner ear.
“That was a game changer,” said Caudill. That was when her confidence began to rebuild along with her strength.
Joining IU Health
Before she was diagnosed with cancer Caudill was an intern for Music Therapy Services of Central Kentucky. It took nearly two years for her to recover from cancer and the side effects of treatment. She returned to her internship in 2014, and went on to achieve board certification in music therapy. She moved to Nashville, Tenn. in 2015, where she taught music in a preschool lab school at Vanderbilt University. She also worked for Musical Bridges, LLC, a practice providing individual/group therapy and music lessons for clients with special needs.
In January, when a music therapy position became available at IU Health, she thought the opportunity to return to the very hospital where she was treated could either be devastating or rewarding.
“What sealed the deal was when I walked into the Complete Life Center and met the awesome team,” said Caudill. “This is a facility committed to treating the whole person, not just the disease.”
She’s not afraid to share her experience with patients.
"Women are living beyond their ovarian cancer diagnoses now, more than ever before. I am proof of that, and I'm not alone," said Caudill, who has enrolled in a promising research effort for ovarian germ cell tumor patients at New York's Memorial Sloan Kettering Cancer Center, the MSK-IMPACT genomic study. "I'm fortunate just to be alive, so I feel a strong obligation to offer as much of myself and my story to help others as I can. This manifests directly in my career, and indirectly as a research participant." Caudill is also an advocate leader for the Ovarian Cancer Research Fund Alliance, an organization she represented in meetings with lawmakers in Washington, D.C. this spring.
In her first weeks on the job, when a patient complained about pain from her port, Caudill pulled down the neckline of her shirt to reveal her own port, still in tact underneath her skin.
“I think it’s great when patients come back to visit, but when they come back to give back like Emily has, it is a true sign of hope,” said Rose Hampton, a patient tech at Simon Cancer Center. It was Hampton who was by Caudill’s side, as she looked at herself in a mirror – bald and bloated. “I thought it was a joke, like I was looking in one of those carnival mirrors that distorts everything,” said Caudill.
With newfound physical and emotional strength, Caudill effortlessly raised her fiddle to her chin and began picking out another tune. On the hand that holds her instrument is a ring that forms a gold circle. It’s a reminder.
“I came back here to play music, lift spirits and help other patients heal,” said Caudill. “It’s like coming down the other side of the mountain. It’s like something that’s come full circle.”
-- By T.J. Banes, Associate Senior Journalist at IU Health.
Reach Banes via email at T.J. Banes or on Twitter @tjbanes.