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OCEAN ISLE BEACH—If you’ve seen a periwinkle-colored bracelet with the words “Heartburn can cause cancer,” or “Nobody Fights Alone” you may have met an Ocean Isle Beach couple working to educate others about the dangers of esophageal cancer.
Last September, Jay and Diane Middleton celebrated their grandson’s first birthday during Labor Day weekend. That weekend, Jay ate a deviled egg and immediately felt pain. Plagued by acid reflux issues and sleep apnea for years, he tried to ignore it.
“It felt like fire, like I was eating hot coals,” he said.
Jay was taking medications to help but they weren’t. Jay went to the doctor and was referred for a medical procedure.
“Before I recovered from anesthesia, the doctor told Diane it was cancer,” Jay said.
Jay was diagnosed with Stage 3 esophageal cancer. He began fast-track treatment the following week at Duke.
“In the space of a week, we went from not knowing what and where the esophagus was to knowing everything about it,” Diane said. “We didn’t know. We thought it was acid reflux and, boom, we are meeting all these people who were going to save his life. They became like family.”
“The minute we got in the car, we looked at each other and asked, ‘What’s next?” Diane said.
“I’ve said all along, ‘I’ve got cancer, but cancer doesn’t have me,’” Jay said.
“That’s our motto and to be proactive,” Diane said.
Esophageal cancer isn’t as common as other types of cancer, although according to the Esophageal Cancer Action Network it is the fastest increasing cancer diagnosis in the U.S. and is linked to heartburn.
“We only know of two cases in Brunswick County,” Diane said.
Almost immediately after the diagnosis, Jay began daily treatments of chemotherapy, radiation and surgery. He did radiation five days a week and chemotherapy once a week for six weeks. On Dec. 15, 2011, he had major surgery.
“Our surgeon told us this was the most invasive surgery a person can go through,” Diane said.
Jay’s esophagus was removed, and his stomach was stretched to connect to the tip of where his esophagus used to attach. Jay was unable to speak from the time of the surgery until spring of this year due to vocal chord damage.
“I feel very atypical. I withstood chemotherapy and radiation treatments without any real side effects,” Jay said.
“Everybody who gets cancer, it impacts differently,” Diane added. “Jay has been a miracle. We have a new purpose. We want people to be aware so they don’t have to go through it. If you can catch it early, it can be totally taken care of before it turns into cancer. We don’t want others to be like us and be taken by surprise.”
The biggest piece of advice Diane feels people need to know, understand and practice is to be your own medical advocate.
“Don’t just blow it off,” Dianne said. “Be honest with how much something is impacting you…you have to have doctors who are experienced with what you are facing.”
After receiving the diagnosis, the Middletons did a lot of online research. Diane has compiled a list of helpful websites and support groups that made their journey easier. She knows it took her months to find the resources, and she doesn’t want anyone else to go through the same process.
Diane and Jay want to help others who are facing a cancer diagnosis and even more specifically esophageal cancer.
Among online resources the Middletons found useful are online support groups. A couple of sites they recommend include www.ecan.org, www.choosehope.com, www.caringbridge.com. An online support group may be contacted at email@example.com and on Facebook.
“Jay’s my hero,” Diane said. “His spirit has rallied people.”
The couple hopes to continue to rally people. Their lives have changed, but cancer doesn’t have them.
Rachel Johnsonis a staff writer at The Brunswick Beacon. Reach her at 754-6890 or firstname.lastname@example.org.