Barry Levine was “healthy as a horse” for most of his life. He even did high intensity CrossFit training. But in 2022, he started having trouble swallowing his dinner.
“It felt like food was getting stuck just below my rib cage,” he says.
When antacids didn’t help, he went to the doctor. They sent him to a heart specialist first. After a battery of tests, his heart got the all-clear.
Then, he visited a digestive specialist. They performed an upper GI endoscopy, where the doctor inserts a long, thin tube down the throat to look at the upper digestive system. When he woke up from the procedure, Barry received life-changing news.
“The doctor said he hadn’t biopsied yet, but he’d seen enough cancer to know,” Barry remembers. “It was a total shock.”
Another Endoscopy to Make Sure
After the initial diagnosis in August 2022, Barry visited Robert Marsh, MD, an oncologist practicing near Barry’s home in Gainesville, Virginia. Marsh explained that his practice works closely with doctors at UVA Health’s NCI-designated Comprehensive Cancer Center in Charlottesville.
He sent Barry to Vanessa Shami, MD, at the UVA Health Digestive Health Center. She did another endoscopy and endoscopic ultrasound to confirm and stage the cancer.
“As I was getting ready to get put to sleep,” Barry remembers, “Dr. Shami walked in the room, and before she even introduced herself, she looked at me and said, ‘Hey, you’re going to get through this, and you have to believe you’re going to get through this.’ I was so comforted by that. She was amazing.”
The endoscopy and biopsy confirmed the diagnosis and stage of the cancer. Now that he was sure he had esophageal cancer, it was time to start treatment.
Starting Cancer Treatment Close to Home
After diagnosis, Barry was able to start treatment close to home. He had 6 weeks of chemotherapy once a week. He also had radiation therapy 5 days a week for 6 weeks.
Barry was able to continue his work for a software manufacturer through most of treatment. He worked from his home office with his 2 golden retrievers by his side.
“I am very fortunate that I worked for such a great company that basically said for me to work as much or as little as possible,” he said. “Honestly, I needed the distraction.”
Keeping a checklist of tasks helped Barry keep going during treatment.
“One task was chemotherapy. The other task was radiation therapy. I got through that, and it wasn’t terrible,” he says. “It wasn’t pleasant, but it wasn’t terrible, especially when you see other people that look so much worse than me.”
An Esophagectomy Before the Holidays
After chemotherapy and radiation, the next task on Barry’s list was surgery. He went to UVA Health in November for a scan and to meet with thoracic surgeon Linda Martin, MD, MPH, at the Emily Couric Clinical Cancer Center. She scheduled his surgery for Dec. 23.
At first, Barry wasn’t sure about surgery over the holidays.
“I said, ‘Are you kidding me?’”
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Martin told him she’d scheduled the surgery for a quieter time because she would need most of the day for the procedure. She was going to perform an esophagectomy, a surgery to remove part of Barry’s esophagus and part of his stomach. Then she would attach the remaining section of his stomach to the remaining esophagus.
“The Happiest Guy in Charlottesville”
Barry said the 3-week wait before surgery was nerve-wracking.
“It’s the only time I ever really got scared through this whole process,” Barry says. “She said, ‘I know it’s going to be hard, but we’ll get through it.’ And we did.”
The esophagectomy went well. Barry was only in the intensive care unit for 12 hours after surgery before he moved to a regular room.
“I was the happiest guy in Charlottesville,” he says. “They took really good care of me. I was never in pain,” he says.
Learning to Eat Again After Esophagectomy
Barry went home on Dec. 29 with a feeding tube attached at his waistline, which he kept for 6 weeks. His new task was learning how to eat again with the support of UVA Health nutritionist Monica Hershey, RD.
“I say I don’t have a stomach anymore. I have a tube that is my stomach. And so, it’s my new normal,” he says. He started out eating pureed soups, cottage cheese, and other soft foods. Scrambled eggs came next.
“When my wife made me that first scrambled egg, it was just pure ecstasy,” he remembers.
Barry sleeps upright so he doesn’t regurgitate and get food in his lungs. He’s learned to keep healthy snacks and foods with him and adjust his eating habits to avoid digestive problems.
“My biggest challenge is that I can eat a little bit all day long. I can’t sit down and have a meal,” he says. “I’m 64 now, and it’s hard to change your life at this age, but I have to change my life if I want to stay alive.”
He’s made a lot of changes to his diet, including eating:
- White fish, nuts, and other high-protein foods
- Ground turkey instead of ground beef
- Plant-based burgers instead of beef
- Fruit if he craves sweets
He avoids tomato sauce and certain dairy products. He also stays hydrated with electrolyte mixes.
“I kind of miss eating a big burger on the grill or steak, but I’m proud of the fact that I’m eating much cleaner and healthier than I ever have,” he says.
Immunotherapy & the Future
Barry recently finished 15 months of monthly immunotherapy. It’s a 30-minute treatment 1 day each month to strengthen his immune system and target and kill any remaining cancer cells.
His last several scans have shown no evidence of cancer. While he still worries in the back of his mind, he keeps a positive attitude and doesn’t let his worries stop him. He’s looking forward to a cruise this fall with family and friends.
“We booked a penthouse on this cruise ship with a full-time butler, and we’re going to enjoy a 2 week trip,” he says. “I’ve never taken 2 weeks off in my life.”
He’s also thinking of ways to make a difference for others with cancer and their providers. He wants to organize a charity golf event for the Emily Couric Clinical Cancer Center, leveraging the network he’s built in the community and in the federal government from his job.
Barry said he’s inspired to give back because of the excellent care he received during treatment. His nurse navigator at his local oncologist practice helped him manage issues with sleep, side effects, and other concerns. And the UVA Health nurse navigator who supported him during surgery, Samantha Rowe, RN, became a Facebook friend.
“These nurses have become family to me during my chemo and immunotherapy,” he says. “I couldn’t say thank you or God bless you enough to these people, where I felt like it was meaningful enough.”