Since she was diagnosed with a rare tumor 21 years ago, Dana Lawson’s dreams have shifted. Moving to Washington state and being surrounded by mountains changed her life goal from running a marathon to hiking a 5K in elevation — 16,404 feet. That new goal is fueled in part by Lawson’s efforts to raise money for the Desmoid Tumor Research Foundation, an organization that helped Lawson through her treatment.
September is Desmoid Tumor Awareness Month, and since the foundation had to cancel its annual 5K run fundraiser due to the coronavirus pandemic, Lawson decided to make up her own fundraiser by pledging to hike a 5K in elevation and asking donors to meet that challenge dollar for dollar.
As part of her 5K hiking quest, Lawson set a more immediate goal to hike 2,350 feet in elevation and swim in Lake Angeles, an alpine lake at Olympic National Park — all on one leg.
Last week, she did it.
Lawson says she wasn’t entirely prepared — when she imagined this moment in her head, there were celebratory beers, she would have a bathing suit ready and, ideally, a rainbow or two would be framing the lake. Instead, it was her and two friends, sitting by the edge of the water in disbelief. And when the lake cleared out, she took off her shirt, strapped on her white and purple unicorn helmet and took a dive. It was kismet — beautiful and unexpected and everything she had dreamed of.
But the story of Lawson’s hike to Lake Angeles began more than two decades ago, when Lawson, 47, was first diagnosed with a desmoid tumor in her right leg. Desmoid tumors arise from fibroblast cells that exist all over the body, and for many patients, as Lawson was relieved to discover, the tumors aren’t life-threatening. So for nine years, doctors attempted to treat Lawson’s tumor with chemotherapy. Eventually her right leg had to be amputated above the knee.
Lawson was an active person before her diagnosis — she used to work as a coral reef dive guide in Florida. Hearing that her leg had to be amputated was somewhat expected after nine years of chemotherapy and recurrent tumors, but the news made Lawson more determined to reach her fitness goals and start checking things off her bucket list.
As Lawson came to terms with the impending amputation, she and her mother made a pact to run a marathon together. But right before her amputation, her mother died from an aggressive form of cancer.
“So I told her I was going to run that marathon for both of us,” Lawson said.
Once she had recovered from surgery, Lawson was fitted with a walking blade prosthetic, then transitioned to a running blade. She ran her first 5K with the Desmoid Tumor Research Foundation, which connects patients like Lawson to clinical trials and resources. But something wasn’t right. She couldn’t move past the shorter races and she had pain in what remained of her right leg and her healthy left leg.
On her fifth anniversary of being tumor-free, doctors found a new growth. Lawson began entering clinical trials to try and eradicate the tumor — her first was for four years at the National Institutes of Health in Bethesda, Maryland, and the next was at the Seattle Cancer Care Alliance. She moved from Bethesda to Port Angeles in February. Her clinical trial is only scheduled to run through December, but Lawson says she doesn’t plan to leave Washington.
“I am here to stay. I refer to the area I’m in as ‘the unicorn stables,’” Lawson said. “I love it here, it is just fabulous. The mountains are just spectacular here, and there’s so much to explore and the climate is beautiful and I love the people, and I truly do feel like I am at home here.”
After her move to Washington, Lawson decided to stop wearing her prosthesis. It just wasn’t working for her. For amputees, prostheses are often said to be a “replacement of what’s been lost,” especially if you want to keep active, said Lawson. Out with the prosthetic limb went Lawson’s hope of running a marathon to honor her mom. But, inspired by the ubiquitous mountains in her new state, Lawson decided she would figure out a way to hike instead. Hiking was a way she could fulfill the promise she had made to her mother and to herself — to continue moving and exploring — and to raise money for an organization that helped her get through a tough time.
Above all, she wanted to hike to Lake Angeles.
Since moving to Port Angeles, Lawson has challenged herself to complete several hikes in Olympic National Park. But she keeps coming back to the hike to Lake Angeles. Prior to last week, she had tried it several times before, careful not to push herself too far (she is still undergoing chemotherapy). To her, completing that hike meant tackling obstacles head-on and fulfilling the promise she made to her mother.
“I had set this goal to run this marathon, a long time ago, and then I just realized it just is not going to happen,” said Lawson. “I’ve been sort of searching in the back of my mind for something else out there that I can work toward physically. And so when I saw the Lake Angeles trail, I knew it was going to be my first really big challenge hike that I’m going to do.”
Like with this hike, Lawson enjoys setting goals for herself, and one of her current goals is to help raise awareness for her rare tumor. Desmoid tumors are extremely rare; on average, only 900 people in the U.S. are diagnosed each year, according to the Desmoid Tumor Research Foundation. With such a small number of patients, people with desmoid tumors are often connected. There are ongoing fundraising efforts for research, clinical trials and support groups.
Lawson’s story is well known among desmoid tumor patient circles. Her social media presence, fundraising efforts and generally positive attitude have made an impact on Christina Kosyla, who first met Lawson in a virtual group for desmoid tumor patients called the “Desmoidians,” and was instantly taken aback by her story.
“What I love about Dana is that she is very real about what she’s going through,” said Kosyla, 31, who has also been diagnosed with a desmoid tumor. “I stay grateful but I try to really stay authentic. And I think Dana really has that too. She’s not going to sugarcoat any of her experiences. But she’s got this indomitable spirit. And that’s what I really gravitated toward.”
It was that spirit that finally got Lawson to Lake Angeles last week.
She’d started the hike up Lake Angeles trail several times before, always stopping before a bridge that loomed dauntingly across Ennis Creek. Lawson wasn’t sure she’d have the balance to cross the bridge by herself and assumed she’d have to scoot across the bridge on her butt with her forearm crutches. There was also the looming question of how she would get back down the mountain.
But as she hiked up to the bridge last week, Lawson just “felt strong.” Like she could do anything. Filled with determination, she concentrated on maintaining her balance and carefully made it across the bridge on her crutches.
When she got to the lake, she didn’t have her celebratory beer and there were no rainbows, but it was euphoric.
Lawson felt enlightened.
“I had nothing — no cares. No real worries,” Lawson said. “It was just this beautiful moment in time where my heart was so full.”
News of Lawson’s hard-fought trip up to Lake Angeles quickly spread around the desmoid tumor research community.
“I’ve never met someone so determined and so dedicated,” said Marlene Portnoy, co-founder and executive director of the Desmoid Tumor Research Foundation. “She’s just exceptional. She’s an inspiration, for all I’m concerned. For her to accomplish what she’s accomplished and for her to continue on with the challenges that she’s faced is unbelievable.”
As it has for many others amid the COVID-19 pandemic, life has taken Lawson on a series of ups and downs. But she says the move to Washington has been good for her. (As of Sept. 15, she was 1.84 miles into her 5K — 3.1 miles — hiking goal.) Fighting her way up Lake Angeles on one leg helped Lawson put everything in perspective.
It was the culmination of everything she’d been through, and everywhere she still wanted to go.
“I would want everyone to find something that makes them just so happy and just go for it. That literally is what life is all about,” Lawson said. “Having one leg, no legs, in that moment, it was just perfection.”