Terry DeCarlo thought his biggest challenge in life was guiding Central Florida’s gay community through the aftermath of the Pulse nightclub attack. But the former director of The LGBT+ Center Orlando, who left in June 2018 for South Florida, is now battling Stage 4 cancer that began at the roof of his mouth and grew toward his skull.
DeCarlo, 56, has spent much of his adult life working in the nonprofit sector to provide health care, counseling and shelter for the LGBTQ community and children with HIV/AIDS. He helped to lead The Center for four years.
“Terry teaches everybody that we all have two hands — one to help ourselves, but more importantly another to pull other people up," said Brett Rose, a South Florida entrepreneur and philanthropist who created a GoFundMe drive for DeCarlo. “This community has so much love for him. I know this cancer is rough, but love is an amazing medicine.”
At The Center, DeCarlo served both as executive director and communications director. He temporarily stepped down in late May 2016 — just 12 days before the mass shooting at Pulse, the gay nightclub where 49 people were killed. Soon after, The Center’s board of directors said DeCarlo was “a critical leader to retain” as survivors turned to the agency for aid and moral support. He stayed another two years, despite a heart attack in April 2017.
DeCarlo said he first noticed symptoms of the cancer this June, when his mouth began bleeding profusely as he brushed his teeth. He went to his dentist, who immediately sent him to a doctor.
On Oct. 15, he underwent a 10?-hour surgery to remove the bulk of the tumor and rebuild his face and jaw. He’ll start radiation on Nov. 12 and then undergo chemotherapy. After a month in the hospital, he is now home, forced to spend much of his day resting and being fed through a tube.
“I want to get the hell off this couch and get moving and do what I do normally,” he said Friday. “It’s not me. I’m a doer.”
Vowing to create a “sanctuary of hope and healing,” the onePULSE Foundation announced Wednesday morning a design for the Pulse memorial that includes a tranquil reflecting pool and 49 trees encircling the remains of the club and a separate, towering museum that “rises like a budding flower,” its rooftop promenade offering views of the memorial and what’s being called the "Pulse District.”
He is also accustomed to being a giver. When Rose first called for permission for the GoFundMe campaign, DeCarlo said no.
“I said, ‘I’ll respect your wishes, but people really want to help you,’” Rose said. “Even for people with the best health insurance, cancer is not an inexpensive disease.”
When the bills began coming in, DeCarlo relented. Now a communications and marketing manager, he has insurance coverage. Still, his out-of-pocket expense for the hospital bill alone is $35,000, and he already is running out of paid sick time at his job.
“You know, [husband] Bill [Huelsman] and I have been together for 23 years, and we’ve dedicated our lives to raising money for other people,” he said. “This is the first time somebody said, ‘We’re going to raise money for you.’ And it just felt awkward. But we looked at the bills.”
Although opioid prescriptions have plummeted in Central Florida over the past 18 months, the number of overdose deaths is down only modestly – the result of a “flood” of powerful illicit fentanyl into the region. And “there is no real help” in the form of the medication-assisted treatment essential to battling the crisis, a new report finds.
The doctors have not spelled out his odds of beating the cancer, though the disease is best caught early. But DeCarlo said the surgery went well, and he felt good enough on Halloween to venture out on a scooter to see friends.
It was liberating, if tiring.
“This is a hard one,” he admitted. “This is a real hard one. But I have to say that people have been wonderful. The support has been overwhelming."