Arlington conference offers resources for young cancer survivors and caregivers

Justin and Katie Ozuna with both speak at Saturday’s conference.
Justin and Katie Ozuna with both speak at Saturday’s conference.

Justin Ozuna felt alone when he was diagnosed with chronic myloid leukemia at age 24.

“I didn’t understand cancer. I didn’t know anybody my age with cancer,” said Ozuna, now 33. “I just kind of lived as if I didn’t have cancer.”

Ozuna said that as a young college student he was irresponsible with his cancer treatment – skipping appointments with his oncologist and not taking his expensive medication regularly because of financial concerns. He dropped out of school to work full-time for insurance benefits. When he finally did seek out a new oncologist after moving to Dallas so he could begin taking medication again, several doctors turned him down because of his history of not sticking with prescribed treatment, he said.

“I was considered a risk. I was a liability. It was a turning point for me in my cancer journey. It opened my eyes to the reality of treatment,” Ozuna said.

Ozuna wants other young cancer survivors to learn from his journey. He is one of several speakers Saturday who will be talking about finances, fitness, fertility and available cancer community resources at the fifth Young Adult Cancer Survivor Conference in Arlington.

Keynote speakers at the conference are cancer survivors Doug Lawson, chief operating officer at Baylor University Medical Center, and Wade Brockway, a tax accountant from Fort Worth.

Dr. Karen Albritton, director of Cook Children’s Adolescent and Young Adult Oncology Program, said patients between the ages of 15 and 40 face additional challenges that older patients don’t — particularly concerns about how treatment may affect their fertility.

“Biologically, this is a unique time of life when procreation and relationships and family-building is important to them,” said Dr. Albritton, who said patients may consider pausing therapy or taking other steps to preserve their fertility. “For the 15 or 20 year old, we absolutely make it a huge part of our discussion at diagnosis.”

Cancer can also affect relationships with friends and loved one who may not know how to handle a patient’s physical or emotional needs, said Dr. Albritton, who has previously spoken at the conference.

Ozuna said he believed he was in remission when he began dating his now-wife, Katie Narvarte Ozuna. Shortly after the couple became engaged, they had to temporarily move from Dallas to Houston so Ozuna could begin experimental clinical drug trials after his regular medication no longer worked and he became ill.

“We got engaged and one week later he was having trouble walking to the bathroom,” said Katie Narvarte Ozuna, recalling how ill her then-fiance was during the clinical trials. “It was this flip of super happy to ‘holy [expletive] this is what cancer can do.’ We went through such a rough time.”

Navarte Ozuna, also a speaker at Saturday’s conference, said she struggled in her new role as caregiver. That’s why she now reaches out and offers support and advocates for others who finds themselves in that position.

“Traditionally, caregivers are overlooked during the cancer journey. It all focuses on the patient,” said Navarte Ozuna, 31, who is now an oncology navigator. “I didn’t know anyone else who was a caregiver or touched by cancer. I just really crashed and burned. I was stressed and anxious. I felt alone and I felt really upset.”

“It’s important to find a caregivers’ support group online or to connect with someone who knows your story,” she added.

Ozuna said he didn’t meet anyone with cancer who was his age until four years after his diagnosis.

“That’s why it’s important for us to be involved now and tell our story. Once I did find that peer support, it was a game-changer for me. I could identify with other people. I didn’t feel so out of place in a world that doesn’t really know cancer or hasn’t experienced it at a personal level,” Ozuna said.

Susan Schrock, 817-390-7639

Twitter: @susanschrock

If you go

▪ The Young Adult Cancer Survivor Conference is scheduled from 9 a.m. to 3 p.m. Saturday in Rio Grande Room A at the University of Texas at Arlington’s E.H. Hereford University Center, 300 W. First Street. The event is geared toward cancer survivors, caregivers and young professionals between 20 and 40 who want to learn about fitness, finances, fertlity and cancer resources.

▪ Cost: $10 per person, can be paid by cash or check at the door.

▪ ▪ The conference is sponsored by the Baylor Charles A. Sammons Cancer Center at Dallas, Leukemia Texas, the Leukemia Lymphoma Society, the American Cancer Society, Baylor All Sants Medical Center at Fort Worth, Cook Children’s Medical Center and UTA Health Services.

Information: Call Suzy Salomon at 214-818-8473