Linda Wells loved to dance.
“She danced since she was a little girl and was teaching the little guys at the dance studio, which she loved to do,” said Mark Wells, Linda’s father.
It’s been said “all good things must come to an end,” but Linda’s dancing should never have been one of them.
At the age of 15, Linda started having health problems. The Mechanicville teenager was nauseous, constantly fatigued and in near-constant pain. For a year, her symptoms left doctors and specialists baffled; until the pain became unbearable and she ended up in the emergency room, where someone ran a CT scan.
“They noticed the first tumor, which they operated on right away and took care of that, but there were more tumors they didn’t take care of,” said Wells.
Wells finally knew what was wrong with his daughter but the diagnosis was a grim one. Linda had peritoneal Mesothelioma, a rare cancer of the abdominal cavity.
“Everything I read was not very good. Nine years ago, when we first learned and did research, the average life expectancy was about 12 months, but also on the other hand, the normal age for someone to get this is 60 or 70,” said Wells.
Mesothelioma is caused by asbestos exposure. Nobody knows for sure where Linda came in contact with the asbestos that caused her cancer.
“Everybody has theories, nothing we could say for sure. I was in the automobile business so I handled brake parts but we don’t know that,” said Wells. “The schools she went to had asbestos and the house she grew up in had asbestos siding. There are a lot of different variables.”
Linda is preparing for her sixth surgery to remove tumors that are aggressively returning, but she’s already beaten the odds. Now at the age of 25, she’s in constant pain and can experience tiredness and nausea, but she tries her hardest to live a normal life.
“She’s pretty tough as far as dealing with this. Her quality of life is certainly not what it should be,” said Wells. “She lives in an apartment above her mom. She always wanted to get a place of her own … it seemed like the perfect and logical place for her to go.”
Wells said planning Linda’s sixth surgery made him feel helpless to fix things, so he decided to find another way to help.
On Saturday, Sept. 24, Wells kayaked down the Hudson River to raise money (but mostly awareness) about the disease and in honor of Mesothelioma Awareness Day on Sept. 26.
“Three of us paddled down the Hudson … Schuylerville to Mechanicville in just over five hours,” said Wells.
Wells chose kayaking because it’s different than traditional fundraising runs, walks or bike rides and is a hobby he recently picked up.
“I don’t remember seeing people kayaking before … I like it so I said, ‘That’s what I’m going to do,’” said Wells.
Patti Turi of Stony Creek went from being a complete stranger to forming an deep bond with Linda and her family just minutes after seeing Wells on a local television news broadcast.
“I called Mark within 10 minutes and told him I’d be there,” said Turi, who kayaked alongside Wells.
Turi also has Mesothelioma, and was diagnosed 10 years ago when she was 43. She said it was difficult for her to deal with as an adult so she felt an immediate urge to support Linda, who went through it as a teenager.
“I couldn’t possibly imagine being 16 and given that same kind of a diagnosis,” said Turi. “I felt I really needed to do this in order to support her in her journey.”
This is the first time Turi has participated in an event to raise awareness about the cancer and it’s an effort she said is important to continue.
“It’s something I really think people need to be aware of,” said Turi.
With Turi and a few other people in his corner, Wells now has a small team to help support his awareness efforts.
“I’m starting to plan next year’s event. Next year it will be a lot bigger because I’ve got so many people who want to help me,” said Wells. “People don’t really know about it, it’s a rare cancer.”
Wells said since it’s often referred to as an orphan cancer, with only about 2,500 to 3,000 newly diagnosed cases a year in the U.S., government funding is “lopsided” compared to other cancers.
“Hopefully by raising awareness, more money will get earmarked for research,” said Wells.
More funding for research and new treatments would go a long way in helping people like Linda, who need multiple surgeries and can encounter insurance issues.
“We’re waiting on the insurance company. It’s kind of making us jump through hoops to get this to happen. The procedure she needs done is in Maryland so [insurance] isn’t an automatic thing,” said Wells.
Turi feels lucky to have been relatively healthy for a while now but said doctors will never pair “Mesothelioma” and “remission” together.
“Because of the nature of asbestos, it’s something you’ll always be looking over your shoulder,” said Turi, who sees her doctor for testing every six months.
It’s a whole year until Wells can hop in his kayak to raise awareness again, but for now, there is still one thing he can do for Linda.
“All we can do is be supportive,” said Wells. “Make sure she gets as much treatment as is available out there.”
And, for the first time, Wells and his daughter have a special, new kind of support.
“I feel that because of my health I need to be able to be there to support [Linda]. Her journey through this has been much worse than I could imagine,” said Turi.
Anyone with questions about how to help can email Wells at firstname.lastname@example.org. More information about the disease can be found online at curemeso.org.