CHAPEL HILL, NC — An uncommon tumor and two co-existing conditions it spawned gave Johnny Deal a priceless gift: more time with his 3-year-old grandson.
“Before I got sick, I played golf all day every Saturday,” said Deal, 55, of Lenoir, N.C. “Now, I can’t play, but I spend every Saturday with Noah while my son and his wife work. It’s important time I didn’t make before.”
Deal’s medical journey, which he describes as “a roller-coaster that I want to shut down so no one ever rides it again,” began in March 2009 with a lung infection that four weeks of antibiotics didn’t touch.
Johnny Deal is dealing with illnesses that one would think would get him down. But somehow, had and is wife Phyllis, are able to take their current trials in stride. Instead of viewing the hospital appointments and treatments as an interruption to their life, they purpose to live in each moment that they are given.
By June, the diagnosis was small cell lung cancer, unexpected news to Deal, a non-smoker who had lost his long-time job as a furniture plant manager in February.
Deal began chemotherapy in July, and hair loss, blood platelet issues and numbness in his extremities followed. And he began to go deaf.
“I tried to stick with my church choir through the Christmas cantata, but do you know how hard it is to sing when you can’t hear?” said the ever-practical and good-humored Deal, who met his wife Phyllis at church while in high school.
Johnny was first referred to UNC Hospitals in early 2010 for a consult about the hearing loss, which later was reversed following surgeries in April and December.
Also at UNC Hospitals, the initial oncology consultation revealed that the small cell lung cancer diagnosis did not make sense, said Mark A. Socinski, MD, professor of medicine at the UNC School of Medicine, a member of the multidisciplinary thoracic oncology program at the UNC Lineberger Comprehensive Cancer Center and leader of Johnny’s treatment team.
Dr. Socinski recommended a video-assisted thoracic scope (VATS) biopsy to establish the correct diagnosis: thymoma, an uncommon tumor of the thymus, a gland behind the breastbone and between the lungs that produces compounds that strength the immune system. In Johnny’s case, the thymoma was on his right lung.
But Johnny also had developed pure red cell aplasia, a profound anemia resulting from the bone marrow’s inability to produce red blood cells. As a result, Johnny has received more than 70 units of blood since April.
By December Johnny also had developed myasthenia gravis, a chronic autoimmune neuromuscular disease characterized by weakness in voluntary muscle groups.
Coincidently, Dr. Socinski had written a paper about the three conditions co-existing as a medical student in 1983.
“It’s rare that all of this happens to one person, especially the co-existence of the two other conditions,” said Dr. Socinski. “His is an incredibly complicated case, but we are very comfortable with the diagnoses. His previous chemotherapy was not the completely wrong therapy for thymoma, but it was not completely ideal either.”
Johnny began chemotherapy again in December. Despite complications that hospitalized him twice, the tumor is responding.
“No one – patient or doctor – likes complications from chemotherapy, and we try to devise treatment plans that minimize those issues,” Dr. Socinski said. “But medicine is not a perfect science, and every patient is unique. Patients will tolerate complications to the degree that the chemotherapy is working. With Johnny, he’s in much better shape from a thymoma point of view, and it stands to reason that the two other conditions should improve.”
Swallowing, a major issue for myasthenia gravis patients, has improved for Johnny and his senses of taste and smell – which he totally lost beginning in April – have returned.
“You can’t imagine what it’s like to not be able to taste or smell and have trouble swallowing,’’ said Johnny, who’s lost 100 pounds from his pre-illness high of 256. “The chemo still plays with how things taste and smell, but thank God we are on a healing path.”
While in Chapel Hill for treatment, the Deals stayed at SECU Family House, a 40-bedroom hospital hospitality house minutes away from UNC Hospitals that provides comfortable, convenient and affordable housing for seriously ill adult patients and their family member caregivers.
“We all have something in common at Family House, and it doesn’t take long for me to find someone who is in far worse shape than I am,” Johnny said. “We really are like family here.”
“I feel safe here, and it’s affordable,” said Phyllis, a medical secretary. “The volunteers and staff make guests feel like they are somebody.”
A long-time Carolina fan, Johnny never imagined he would see Chapel Hill through the hospital. “They’ve done nothing but take good care of me,” Johnny said, adding that God, family, friends and their church have each played a vital role.
For now, the Deals cherish each day and look forward to their 36th wedding anniversary in May.
“You can’t change what happened in the past,” Phyllis said. “You can talk about it, you can relive it, but you’ve gotta’ pick up and go forward.”
Johnny hopes going forward allows a return to the golf course.
“But I would find a way to play golf without taking time from Noah,” he said.
Media contact: Tom Hughes, (919) 966-6047, firstname.lastname@example.org