PROVIDENCE — In late August, Dr. James E. Fanale was trudging through the Falmouth Road Race — walking up the hills, running down them — for seven miles. Fellow runners encouraged him to “keep trying” whenever he slowed down. But they couldn’t have known — along with most of the people in Fanale’s professional orbit — that he was battling Stage 4 lung cancer.
“Many times, I wanted to say ‘Listen buddy, you don’t know what I’ve got in me,’” Fanale recalled recently with a chuckle.
In December 2022, on the day Fanale retired as president and CEO of Care New England, he shared his diagnosis with a Globe reporter but requested it be kept private. He was handing the reins to new CEO Dr. Michael Wagner after six years leading the second largest health care system in Rhode Island.
Now, nearly a year after retiring, in the comfort of his own home, Fanale, 71, said he is ready to go public. He previously “wanted anonymity. I initially didn’t want anyone to know anything.”
“But I don’t care anymore. I’m not going to hide from it,” said Fanale.
During his tenure, Fanale faced a global pandemic that ripped through hospitals as a staffing crisis plagued the health care industry. He oversaw the financial woes of the system’s three hospitals — Women & Infants, Kent, and Butler — while attempting to make a blockbuster deal to merge CNE with Lifespan Corp., the state’s largest hospital, which was ultimately rejected by state and federal regulators.
Fanale’s career in medicine spanned nearly five decades, and he told the Globe previously that leading CNE was “the most challenging, the hardest work,” and “the most rewarding” in his career.
Yet, on Monday, while reflecting on his retirement, and his future, Fanale said the day he received his cancer diagnosis will remain the toughest of his life.
He had been suffering from a nagging cough and had gone for a CT scan of his chest. Shortly after, he walked into his office and checked his patient portal to review what he expected would be normal findings. Instead, the scan showed a mass in one lung, and other indications of advanced cancer.
“This may have been the first time in my life when my knowledge as a physician did not serve me well, because I knew exactly what I was seeing,” wrote Fanale in an article coming out later this month in the Journal of the American Geriatrics Society. “Shock, bewilderment, anxiety, fear — were some of the emotions I felt, it seemed like all at once, in that instant.”
That day, he settled down — amidst tears — and stayed in his office to finish his meetings before facing the ride home to Falmouth, Mass., to tell his wife. This was the part that was exceedingly hard, even for a physician and his wife, an oncology nurse.
Fanale admits there’s a lot he didn’t know about the experience of having cancer, even as a geriatrician.
“I’ve taken care of patients for 40 years. Now I’m on the other side of it. I never realized what people go through, their feelings, or what caregivers really go through,” said Fanale. “I think it’s just an important and powerful story to tell.”
It’s the story he put to paper in his recently self-published book “ONWARD: A Teaching, and a Love Story — For Physicians, and Everyone.” All of the proceeds will be donated to a new “caregivers fund” at the Dana-Farber Cancer Institute, where he’s being treated. This month, he’s one year into a clinical trial.
The book takes readers on his journey of living with cancer as a physician, and honors his wife of more than 22 years, Deb, his sole caregiver. The story is deeply personal. Fanale details his upbringing in New Jersey as one of eight children raised by an Irish mother and Italian father. He writes about his first wife — they met as undergrads at Penn State University — with whom he has three sons, and their lengthy divorce in the mid-1990s.
After the divorce, alone for the first time in decades, Fanale writes, those first few months as a single man were about “trying to figure out how to have a life.” He was making rounds in the hospital one morning in 1998, when he met a nurse caring for a patient who was challenging to manage, and yet the nurse, his future wife, Deb, was smiling from ear to ear. Fanale not-so-slyly asked her out for drinks, and they married in 2001. The following year, they adopted a 6-month old girl, Caterina, from Russia. Caterina, who is expected to graduate next month with a bachelor’s degree from the School of the Art Institute of Chicago, designed the book’s cover. It features silhouettes of Fanale and his wife, hand-in-hand on one of their daily walks at Falmouth Heights. A park bench at the top of the hill is where Fanale and Caterina had regular father-daughter talks for the last two decades.
“Onward” also focuses on the importance of empathy in medicine, and on the emotional weight of the journey of patients and their caregivers.
“I think empathy should be taught by the people who are in the thick of it, who have experienced it. I really wanted to sit in a room at Brown [University] or at Kent and talk to them, tell them my story and be honest about what the burden of a tumor really is,” said Fanale. “Physicians, students, nurse practitioners, health care leaders who haven’t had a family member go through this need to understand what it’s like.
“I was, like, lost. I didn’t have a clue as to what this entailed... It’s all the visits, the stress, the uncertainty,” he added. “That’s the story I wanted to tell.”
When Fanale was regularly seeing patients, he recalls always giving them a call at night on the same day that he delivered difficult news.
“I think what all of this taught me was that you shouldn’t make the one phone call. You need to continue to keep in touch,” said Fanale. “I get that we [as providers] have a lot to do. But Goddamnit, this is the best job in the world. You actually get to impact people’s lives.
“You should never take that for granted,” he said.
“There’s one goal here: It’s not us. It’s to take care of these folks,” said Fanale.
Fanale’s treatments at Dana-Farber are once every other week. He arrives in the morning around 6 a.m. and is usually there until about noon. Yet in between treatments, after hardly taking more than a few days off for years, Fanale has found a new kind of freedom in retirement. He and Deb traveled to Italy for eight days, they went to Florida for a short vacation, and they hop a plane to Chicago to visit their daughter every two to three months. Last month, they saw Ringo Starr perform, and on a sunny fall day, they spontaneously drove up to Portsmouth, N.H., with their dog and spent the night.
Fanale said he had to stop running about two weeks ago. His feet are numb, a side effect of his treatment. His doctors stopped treatment for five weeks due to an issue in his other lung. They say it isn’t cancer, but they’re still not sure what it is yet. He started treatment again last week.
“Hopefully, with another clinical trial, I’ll make it another year. Maybe I’ll be able to run again, or run in the Falmouth Road Race again,” said Fanale. “The most precious thing I have right now is time. My disease is never going into remission. It won’t be cured. All we can do is control it — stopping the growth.
“But there’s something important for people to understand: You see these Dana-Farber commercials where people are smiling. But behind those smiles is a lot of pain,” said Fanale. “Maybe they were in remission. Maybe they’re doing well. But there’s a lot more that people — including providers — need to see behind those smiles.
“Each of those people have a powerful story. Each have pain and suffering. And each of them have a family trying to just get through this,” said Fanale. “Those are the stories that need to be told.”