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Sarah Conley with Vanderbilt nurse Connie Crawford-Koonce, R.N., during her treatment in 2007 (top), and today (bottom). Sarah is using her experience as a cancer survivor to help educate young adults about health care issues.

 


“I believe that survivorship begins the day you are diagnosed, and every day that you live with your disease, you are surviving.”


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Radiation therapy presents another challenge – the risk of a secondary cancer that develops years later in a small number of patients.

That’s what Sarah Conley’s physicians worried about when
she was diagnosed with non-Hodgkin lymphoma at age 23. The young woman from Mansfield, Texas, had a family history of
cancer – both of her parents are Hodgkin’s lymphoma survivors.

“My doctors wanted to avoid radiation therapy because it increases the chance of breast cancer in young adults,” said Conley. “So we did six rounds of chemotherapy and decided we would do more chemotherapy, if necessary.”

Conley feels comfortable with the treatment plan.

“This is the primary cancer in young adults, and it’s one of the more curable cancers,” Conley explained. “After the first or second treatment, we did an X-ray and the tumor was already shrinking, so that was encouraging.”

A year after treatment, Conley’s cancer has not reappeared, and she is pursuing her dream career. She recently opened a voice studio in Dallas, Texas, teaching private voice lessons. She also founded a nonprofit organization, “How You Live,” to educate young adults about the importance of having a primary care
physician and obtaining health insurance.

“I hear about young people in their early 20s who were
diagnosed with cancer or another serious illness while they were uninsured or had a lapse in their insurance,” Conley said. “It creates a nightmare, causing a young person to be diagnosed late, which significantly decreases their chance of survival.”

Conley believes it is a gift to have this opportunity to help other young adults and calls being a cancer survivor “an honor.”

“I believe that survivorship begins the day you are diagnosed, and every day that you live with your disease, you are surviving,” Conley said. “I feel privileged to be a part of that group of people that has an appreciation for life that others may not have, or
perhaps we simply have a different perspective.”

When she returns to Vanderbilt-Ingram for her next checkup, Conley plans to take advantage of the REACH for Survivorship program.

“My oncologist has kind of become my primary care physician, but I want my next physician to know about the long-term side effects I may face. Ten years from now, if I developed a
problem, I would have something substantial to show to my
doctors, and I would know more about what to expect.”

Moving Forward
Back in Tennessee, Ron and Ardeth Obenauf have charted
a clear path to survivorship. During Ron’s treatment, they garnered much of their support from members of their small, close-knit church.

“My faith played a huge role in my survivorship,” explained Ron. “I go to God in prayer and thanksgiving that I have been able to survive this disease.”

While they did not join a formal support group during Ron’s treatment, they helped set up a Web site called CanConnect (www.canconnect.org), an online support resource for Middle Tennessee cancer patients. They also decided to become research advocates as part of the Patient Advocacy Program at Vanderbilt-Ingram. Both work with colon cancer researchers, representing the patient perspective as investigators design and implement clinical trials.

“The doors have really been opened to us at Vanderbilt,” explained Ron. “We are in meetings that are incredible, with the top scientists in the country – people like Dr. Hal Moses, Dr. Lynn Matrisian and Dr. Robert Coffey. These are huge names in cancer research and we are welcomed into the meetings.”

Ron also serves as a patient research advocate for the Vanderbilt Tumor Microenvironment Network and the couple participates in the Tennessee Colorectal Polyp Study, investigating nutrition, the benefits of exercise, tobacco cessation and other healthy lifestyle initiatives.

“We were given the opportunity to help, and most people who aren’t scientists are never given this option,” said Ardeth. “It is a golden opportunity, and we have done what we could.”

Ron and Ardeth decided to support the Vanderbilt-Ingram cancer research programs with annual financial gifts, and they also donate funds to the Monroe Carell Jr. Children’s Hospital at Vanderbilt.

“We have been really blessed, and we live a wonderful life,” explained Ardeth. “We realized it was a good thing for us to help other causes, places we thought could use a boost here and there. We fund research through Dr. Berlin, and at the end of the year, we get a report on the project and how the money was used. It has been gratifying for us to know what has been done with our money and what the results are.”

The Obenaufs, along with other cancer patients and their families, have discovered that survivorship is a complicated and often rewarding journey. Ardeth describes it succinctly.

“Vanderbilt is helping us and others like us get our lives back on track.” bullet

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For more information about the REACH for Survivorship Program, see: www.vicc.org/cancersurvivor

 

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