"Life is what happens to you while you're busy making other plans." -John Lennon
We've all experienced the way life tends to interfere with our objectives for the future, but few have been as precipitously detoured as Jonathan Levine, MD, FACS. A specialist with ENT Associates of Alabama, Levine was living at a brisk pace as 2012 made way for 2013, balancing an active career with a full family life and finding little time to chronicle the barely perceptible, at first, changes in his health.
In the spring of that year, it was impossible to ignore. He wasn't feeling well. It wasn't one particular complaint -- more a general malaise -- characterized by feeling tired and run down with noticeable weight loss. That was the beginning of a journey that took Levine so close to death that he reached a point at which he believed he would not survive. Only in retrospect and with distance can he appreciate how much adversity -- time spent in the crucible with cancer, can shape a life.
"Being on the tail end of it, I realize it was a tremendous growing experience for me," he said. "I feel I'm a better physician, and I hope a better father and husband. I'm so grateful for the people that helped us along the way."
Before he came to that epiphany, Levine endured more than a year of misery, giving way to agony. His mysterious symptoms continued for months before his condition worsened, quickly and seriously after the slow advance, as tests revealed dramatically elevated numbers for his liver function.
"I was out of work for four months, then got back my strength and limped along another seven or eight months," Levine said. "I kept losing weight and getting sicker. Finally I was admitted to the hospital."
His physicians considered autoimmune hepatitis and performed a liver biopsy, discarding that idea. The idea of lymphoma was proffered, but no one could pinpoint a cause as his health worsened, finally culminating in acute respiratory distress and failing liver function. At that juncture, Levine was transported by air ambulance to the Mayo Clinic, where at last, he was given a final diagnosis. It was lymphoma.
As he waited for news, Levine says his feelings were difficult to verbalize. He had considered all possible diagnoses, many of which were imminently terminal.
"I hoped in some respects they wouldn't find anything wrong when we were trying to find out why I kept getting sicker," he said. "Once I was at the Mayo Clinic and got the diagnosis, the doctors were all so sad to give us the news. But my wife and I had a feeling of relief. Lymphoma is treatable."
And treat it they did. By that time, Levine had been bedridden for months, and his system compromised. But the cure, chemotherapy, was almost fatal because it was so effective. When the first agent was administered, his tremendous tumor burden began to respond at once. Within 15 minutes, his already struggling respiratory system was failing.
"They didn't tell me at the time, but later said I had the worst lung lymphoma seen at Mayo in their recollection," Levine said. "My lungs, liver, spleen and pelvis lymph nodes had a lot of tumor burden with a high level of cells actively dividing."
From September 2014 through Thanksgiving of that year, the Levines, as a couple, went to war against the disease that had quietly and insidiously been attacking his body for more than a year. His subsequent suffering and near-death were the detrimental effects of a positive response to the agent. It was clearing his system so quickly that after his third round of chemotherapy, a PET scan showed his cancer had been eradicated.
"It was really dramatic, and the doctors were very excited," Levine remembered. "They sent my before and after scans to the 'New England Journal of Medicine.' I told my wife a couple of times that I didn't think I would make it, and there I was, three rounds of chemotherapy later, starting to perk up a little bit.
"The situation was very touch-and-go. After the first chemotherapy, I was so sick that I didn't think I was going to live. But slowly I starting getting better and did very well. With chemotherapy, I was free of the disease."
Looking back, Levine understands how difficult it was to pinpoint his disease, but once at the Mayo Clinic, physicians there saw tumors in earlier pathology that should have been noticed in previous readings. Without his physical crash and emergency flight to Mayo, the outcome would have been very different.
"The fact that my liver functions were so elevated threw everybody off a little bit," Levine said. "There were no signs of liver damage, no signs of hepatitis -- that was a challenge, but I think opportunities were missed. If I had not gone to the Mayo Clinic, we would not be having this conversation today."
Levine and his wife, Sarah Ellen, have two daughters and a son, ranging in age from nine to 15.
"They have all been so tough and strong through this," he said. "We were at the Mayo Clinic for three months, and I was too sick to travel. I was away from my children for a while, but fortunately had an army of family and friends who supported us through all of this. My practice was wonderful through all of this, and my partners and administrative staff were a terrific support."
Levine is able to look at the positives in a dire situation. It became an affirmation of his relationship and marriage as the couple shared the small space of a hospital room in enforced proximity for the duration of his treatment in Rochester, M.N
"It brought my wife and me closer in a terrific way," Levine said. "She's very tough, and she was not showing me a lot of what she was going through when I was so sick. At Mayo, we were together 24-7, and we realized we actually like each other a lot. We were reminded of how much we really enjoy each other, so in that way, it was really a blessing."
When he was more stable, Levine returned home, flying back to Minnesota for rounds of chemo and returning to his family after the treatments.
"Now I'm cancer free and have been for more than a year," Levine said. "It's incredible. At this point, it has been over a year since I finished chemo. It's a slow process getting back to normal and getting my strength back. The doctors thought I would never work again and would be dependent on oxygen. Now I'm strong and getting stronger. I'm back at work again and not on oxygen. Everything seems to be headed in the right direction for me."
A musician and athlete, he's rebounding from being bedbound for so long.
"I'm starting all over again," he said. "The first time I tried to walk, I couldn't make it 10 steps. It took time for me to get back to the guitar, but playing the piano was part of my therapy. And it felt so good when I could walk with a normal gait and walk some distance."
Activities such as being able to walk quickly and steadily, the sort of things many take for granted, has changed Levine's perspective on life and in his medical practice.
"I have a different kind of empathy for my patients now, particularly patients who have cancer," he said. "As a physician, you feel compassion for patients, but it is hard to truly fully understand what patients are going through the way I understand now. When you see cancer patients in the office for a brief visit, a lot of times, I think the patient perks up when they see doctors. You don't get a sense of what that patient is struggling with at home and the challenges of trying to get back to life."
Remembering how he felt during his long hospitalization also brought new realizations. When he felt dread at the sight of a nurse walking into his room, needle at the ready, he thought about what it was like to be on the other end of a physician's request for blood samples four times daily.
"Even the simple things that we think are not a big deal are difficult for a patient," he said. "When we're writing those orders, sometimes we don't think about what's happening at the other end of those orders."
Being away from his practice for an extended period has changed Levine's perspective on practicing medicine as a whole.
"One thing I've realized through this is that I really missed being a doctor," Levine said. "This made me appreciate what I do and what wonderful things we do as physicians in the healing arts. I was so busy being a doctor, I wouldn't have thought about that. Being away and now being back, I know it's such a blessing to be able to do that again."