It Takes a Village, and One Very Determined Patient
Art Brouillette was feeling fine: blessed with a wonderful family that includes his wife, two children, and seven grandchildren; working at a job he enjoyed; and taking time for recreation and the company of friends. It was after playing tennis with friends one Sunday in January 2016 that the pleasant rhythm of his full life came to a sudden halt.
By Tuesday, a new pain in his left hip radiated down his leg, making him wonder if he had injured himself on the court. By week’s end, he felt very weak, and his wife Lynne grew alarmed by his growing incoherence. On Thursday, his worried family brought him to Rhode Island Hospital.
At the hospital, diagnostic testing resulted in a surprising and distressing diagnosis. Art was diagnosed with T-cell lymphoma, which required immediate radiation therapy, followed by intensive chemotherapy. He was in the hospital for 43 days receiving treatment, while growing progressively weaker. He was losing his ability to walk, or even stand on his own.
The type of cancer that Art was battling had a hopeful prognosis, usually responding well to treatment. However, Art’s long-term recovery was complicated by the location of two large tumors in his body. Close to his spine, the tumor mass was pressing on his spinal nerves, and as the tumors shrank, the question remained as to whether they could regain function.
His clinicians feared he might never walk again, but Art was more focused on the question of whether he would ever play tennis again. An optimist by nature, he requested that his physicians not share their thoughts on the likelihood of his recovery. He decided he did not want a predetermined outcome lodged as a thought in his mind. Art’s care team complied with his wishes. And while they concerned themselves with the question of whether he would walk again, Art’s goal was no less than a return to the fluid and agile movements required on the tennis court.
Art realized that the way to get to his ultimate goal was to break that goal down into many smaller ones: move your toe, then your foot, now your leg, try to stand. He told his concerned family members, “Keep emotion out of this. We have a job to do.”
His long recovery took him from Rhode Island Hospital to 90 days in a nursing facility for physical and occupational therapy, then to in-home therapy, followed finally by rehabilitation at Vanderbilt Rehabilitation Center at Newport Hospital. It was there that Art made a series of important breakthroughs. He went from his wheelchair to walking with the assistance of crutches and then a cane. In January 2017, he was finally able to walk on his own.
"Luckily, I had Dr. Butera, who is always regarded as the best. He was just great."
During follow-up appointments with his neuro-oncologist and his oncologist, Art asked, “Did you ever think I’d be walking?” Both physicians answered no, finally expressing their initial doubts. Having achieved such a remarkable recovery, Art now wanted to bring it full circle. He was determined to get back on the tennis court!
Art credits his recovery to having the right care provider at the exact right time. The sudden onset of symptoms didn’t allow time for researching doctors. About finding himself in the care of James Butera, MD, his oncologist at the Lifespan Cancer Institute, Art says, “Luckily, I had Dr. Butera, who is always regarded as the best. He was just great.”
He expresses appreciation for his neuro-oncologist at the Brain and Spine Tumor Center, Alexander Mohler, MD, for a quick assessment and for getting him immediately on the right track to progress in his rehabilitation. Art continues, “All of the providers just seemed to fall into place. Everywhere I went, the care I received was just excellent.”
About Shaelyn Bouchard, he says, “I lucked out. The physical therapist was the right person. She pushed me, and I pushed her, and we had a great relationship. She incorporated some tennis moves into the therapy.” By August 2017, Art and his therapist decided that he had attained all the strength and mobility he could through physical therapy.
Art was fortunate in other ways, too. Lynne was by his side every day in the hospital and nursing facility. His son Ryan, a civil engineer, installed assistive devices throughout Art’s home to facilitate his transition from the nursing facility. His daughter Nicole and his friends helped him regain his confidence on the tennis court. And many others helped when Art found creative ways to solve the problems that arose along the way.
When he was no longer eligible for in-home physical therapy, he contacted the University of Rhode Island’s physical therapy department and was able to hire students, who had an opportunity to practice while helping him.
"They believed with all their minds and hearts that positive energy and positive action was the answer to a sudden, devastating situation — and they were right."
When he realized that Lynne had to provide 24-hour care and was afraid to leave him alone, he contacted the URI college of nursing and hired nursing students to help him in the mornings. He also contacted his church, and a volunteer came once a week to relieve Lynne. Art says that reaching out for this help along the way made a tremendous difference for both him and Lynne.
While still in his wheelchair, he began going to his local gym. He told the trainer, “I need to improve my muscle strength, but I can’t get onto the machines.” The trainer told him he’d lift him onto the machines until Art could do it by himself.
Art also derived strength from his strong faith, and mentions that he first got out of his wheelchair right after his parish priest brought a supplication for his recovery to Medjugorje.
But by January 2018, he still couldn’t play tennis like he used to due to his lack of balance. His primary care physician recommended tai chi. Art found a class at the local YMCA, where he improved his balance enough to begin playing tennis on the court, practicing initially with his daughter. Then he began playing with friends, who paced their games to his level of play. As each week passed, he regained more mobility.
Art had an ambitious goal when faced with the challenge of a frightening disease and uncertain recovery. He knew that the only way to reach his goal was not to focus on that goal, but rather on the countless small, incremental milestones that paved the way.
He says, “I never really lost focus. I had about 40 goals that I set initially. Some of the goals were like, moving a toe…. I never looked at what I didn’t have. I just looked at ‘OK, this week, I’ve got this. Next week I want this, plus.’”
Art’s experience “is quite a story of determination and resolve and a family that surrounded him with love and support,” says Dr. Butera. “They believed with all their minds and hearts that positive energy and positive action was the answer to a sudden, devastating situation — and they were right.”
Art’s innate optimism and unflagging determination served him well. Today, he is feeling fine — blessed with his devoted family, working again, walking with Lynne on the beach — and, of course, playing tennis with his friends.