Tim C. was prepared to concede. He had decided against any grueling chemotherapy or any radical surgery that, at best, would only prolong an inevitable end. There is no cure for malignant pleural mesothelioma, and he saw no reason to lengthen a fight.
Then his daughter dropped a three-page, hand-written letter into his lap at the dinner table. And he started reading.
“She basically called me selfish, said I wasn’t thinking about anyone but myself. Instead of giving me sympathy, she gave me heck,” Tim said recently from his home in Kennesaw, Ga. “And it really hit me. It made me rethink everything.”
He changed his mind about surgery and underwent an extrapleural pneumonectomy (EPP) in Boston. Surgeons removed one of his lungs and the lining around it, part of his diaphragm and part of the membrane covering his heart.
Surgery was no picnic, but the results surprised even him. It bought him another 10 years of memories — nine more years than he would have had if he had conceded back in 2002.
“Controlling the pain has been a constant battle for me,” said Tim, 55. “And that’s no fun. Sometimes, I wonder if it was worth it. But other times I know it was. I’ve done a lot these last 10 years. I didn’t just sit around doing nothing. No, I lived another lifetime.”
Tim, whose last name is being withheld over privacy concerns, was a free spirit before his diagnosis, and that didn’t change after he became an official mesothelioma survivor. He has lived long enough to spend much of the settlement money he received as part of his asbestos liability lawsuit.
“I spent a lot because I never expected to live this long,” he said with a chuckle. “I grew up poor, and if I live much longer, I’ll probably be poor again. But I have no regrets.”
In the past 10 years, Tim watched his two teenagers grow up and get married. He paid for their college educations. He hopes to do both with his third and youngest child.
He rode across the country on his motorcycle. Twice he took the bike just to party in Key West, Florida. He traveled extensively, taking trips to Mexico, Aruba, the Virgin Islands and Costa Rica.
Tim also sponsored multiple children in Honduras and covered expenses for young adults taking mission trips to South America.
There have been good days — and bad.
He buried his father a year ago and now lives with his elderly mother in the home where he grew up. Mother and son take care of each other. He has lived long enough to become best friends again with his first wife, although the same can’t be said of his second or third wives.
Tim lived through emergency open-heart surgery, one complicated by residual effects of his earlier extrapleural pneumonectomy and the materials used to sew him back together. He almost died again on the operating table.
“I’m happy to have lived this long, but I’m not sure why I have. God is keeping me here for some reason,” he said. “I don’t know why a lot of good people have passed on, but not me. It’s not because I’ve lived this great, honorable life. I drank. I smoked. I know the difference between right and wrong, but I’ve always been one to flirt with the law.”
A typical diagnosis of pleural mesothelioma comes with a poor prognosis. Most estimates fall in the six- to 18-month range. Even with the best therapies and most up-to-date surgery, a pleural mesothelioma patient rarely gets another five years. Tim, though, got 10.
Much of his longevity is attributed to catching his disease early. He was diagnosed at 45. At the time, he was competing in mixed martial arts. He was athletic. He played rugby, football. He never got hurt. His body still was strong enough to wage a good fight, particularly after his EPP surgery.
“I still look relatively normal. It’s just that narcotics that cut out the pain are a dead end, ball-and-chain life. And chronic pain puts you in a big, black hole. As long as I can stay out of that hole, I’m fine,” he said. “My family now is what keeps me going. Their successes are mine. Their failures are mine. Their love is mine.”
Tim’s mesothelioma stemmed from his early years working with asbestos cement and cutting pipes used for underground water systems in Georgia. He came home covered in white powder — power that was filled with asbestos fibers. He had spent a few years in the Navy but never spent any time on a ship.
He originally thought he had bronchitis and then later was diagnosed with a collapsed lung. He thought he had recovered. But the lung collapsed again. More testing discovered mesothelioma.
“I cried when I found out what I had,” he said. “I drove right to my mother’s house and apologized to my parents for all the grief I had caused everyone through the years, to my dad for having to bail me out of jail when I was young. I asked them to forgive me, and they said they had forgiven me a long time before, like the day after it happened.”
Tim’s youngest daughter was only 3 when he was diagnosed. His third wife was 27. Yet it was Tim’s 17-year-old daughter who convinced him he was letting down everyone around him by giving up.
And after considerable family debate, Tim went to Boston and Brigham and Women’s Hospital, where he found surgeon David Sugarbaker, M.D., who helped champion EPP. He became one of Sugarbaker’s greatest success stories.
While Tim was attentive to follow-up scans and therapy at first, those every-six-month checkups have come to an end. They don’t interest him anymore. If the mesothelioma is coming back, and it almost always does, Tim would rather not know until it breaks down the door.
“I don’t want to know anymore. I know what it’s like to pre-grieve. Somebody tells you you’re going to die, and the wife flips out, the kids flip out. I won’t go through that again,” he said.
Instead of managing his disease, Tim wants to manage his pain. He recently tried a radio frequency procedure that essentially burns off the nerve endings in hopes of reducing his pain. He had already tried a resection of damaged nerves, but that only made things worse.
“When I was 16, I never thought I’d live to be 40,” he said. “And I made it. I’ve had it pretty good.”
Can you relate to Tim’s story? Do you want to share yours with us and the mesothelioma community? Let us know in the comments below or on Facebook.