Esophageal cancer survivor marks end of treatment with custom sculpture
Gina Van Thomme
Roberta Burns was diagnosed with esophageal cancer on her 64th birthday. She’d been dealing with dysphagia, or difficulty swallowing, for several months. But it wasn’t until the early hours of her birthday, when she was unable to swallow an aspirin, that she went to the emergency room. When doctors couldn’t fit a scope down her throat, they opted for a CT scan. It revealed a tumor high in Roberta’s esophagus near her voice box.
Roberta began considering her treatment options, telling her doctor that she’d heard good things about MD Anderson, which is about a seven-hour drive from her home in St. Bernard Parish, Louisiana. Her doctor agreed.
“That's the place I would go, and my family members would go, if something like this happened to us,” Roberta recalls her doctor saying.
After a second gastroenterologist in New Orleans echoed that sentiment, Roberta requested an appointment at MD Anderson.
Although surgery is an option for treating esophageal cancer, a consultation with Reza Mehran, M.D., confirmed that removing Roberta’s tumor would also mean removing her voice box and a tracheotomy. Roberta says she and Dr. Mehran both agreed: “Ain’t no way.”
Instead, Roberta began chemotherapy. Roberta and her husband stayed at an RV park in Houston during the week while she received treatment, making the drive home to Louisiana each weekend.
Each weekday for a month, she would lie flat on a table wearing a custom plastic face mask to keep her properly positioned as beams targeted her tumor. Drawing on her knowledge of art history, Roberta found herself comparing her radiation mask to a death mask, a mold of someone’s face to preserve their likeness after they pass away.
The process of receiving radiation was painless and quicker than chemotherapy — about 15 minutes start to finish. But side effects, including fatigue and skin irritation, set in around Roberta’s third week of treatment. It also resulted in scarring that left Roberta’s voice hoarse and affected her ability to eat solid food. She began relying on a feeding tube.
“When I finished my radiation treatment, which got rough at the end, I was just so happy to be done," Roberta says.
On her last day of treatment, Roberta asked the technicians what they would do with her radiation mask. When she learned many masks are disposed of after treatment, Roberta had an idea. “Can I have mine?” Roberta recalls asking. “This isn’t a death mask. This is a life mask. I'm going to do something with this.”
Radiation therapy inspires art
Both lawyers, Roberta and her husband have long been art aficionados. In addition to an art collection of their own, the couple also has a venue on their property in St. Bernard Parish that hosts a variety of exhibits and installations, including modern art and art inspired by the region’s history.
Prior to her cancer treatment, Roberta had purchased a large metal sculpture depicting a female form modeled after the sculptor’s friend who had cancer. Roberta reached out to the same sculptor to discuss ideas for her radiation mask. "I was thinking I could have it reproduced in metal or dipped in metal," Roberta says. “I was thinking gold."
Together, the women decided to preserve the mask by covering it in gold leaf. While Roberta was happy with how it turned out, the piece wasn’t yet complete. "I wanted to somehow mark the hashtags on the neck where the radiation was being directed,” Roberta says.
As it happens, the sculptor’s husband is a glass artist specializing in uranium glass. Together, Roberta and the husband-and-wife artist duo decided neon green uranium glass that glows under a blacklight would be a fitting way to mark the areas targeted with radiation. The finishing touch was adding matching uranium glass flowers.
After several months of building, the piece was complete. “It was more beautiful than I could've conceived,” Roberta says. “It just says everything about the experience and my hope for going forward.”
Roberta chose to display her new piece on a glass pedestal in the corner of her dining room overlooking the front garden. “You can see it from the kitchen, you can see it from the living room, you can see it from several angles,” Roberta says. "I want to be reminded all the time.”
And when it came to naming the piece, Roberta knew just what to do. “I call it ‘Life Mask,’” she says.
Life after esophageal cancer treatment
Although Roberta’s treatment was successful and her tumor responded to radiation, life after treatment has its challenges. Roberta has taken them in stride, all while continuing to practice law and making a return to riding and showing her Paso Fino horses.
“I've adapted. I'm used to tube feeding, I still work, my voice has gotten a lot better,” Roberta says. “I’m typically an optimistic, happy person. I just enjoy life.”
Roberta is also hopeful that future treatment advances might dilate her esophagus enough to make eating and drinking without a feeding tube a possibility. “Hope springs eternal in my mind,” Roberta says.
As for her advice to other cancer patients, Roberta encourages them to come to MD Anderson as soon as they can. “We keep hearing and reading that MD Anderson is the best,” Roberta says. “I'm not going to argue with that.”