At her sickest, maybe on a day she puked 70 times or when walking down a hospital hallway felt like the brutal training that made her a world champion triathlete, Siri Lindley visualized running up her favorite mountain trail in Lyons.
Years before she was diagnosed with a rare and especially aggressive form of leukemia, she turned to the triathlon because, after seeing one race, she determined that’s what she needed to feel alive. Lindley had spent her life surrounded by studs — she was the first three-sport varsity woman athlete at Brown University — and yet she was awed by all the body types, from the squishy to the strong, doing three sports in one race. She was 23 and could not swim, at all, but if all those people could do it, why couldn’t she?
She finished dead last in her first race, and when she called her mother, crying, Mom answered Lindley’s sobs by telling her she was proud of her for trying something new and that, now, she could focus on something she was good at.
“Mom,” Lindley said, “I’m going to be the best in the world.”
Before you call that crazy — which is OK because today, 30 years later, Lindley does too — consider that sports had always been there for Lindley, and she needed them more than ever: She had come to terms with being gay, and her father, who meant as much to her as a father can, rejected the notion and, therefore, her. Sports, in this case the triathlon, was the only way she knew how to prove to herself she was worthy and that she could do great things on her own.
“I was desperate to find a love for myself and a respect for myself,” Lindley said.
The sport kept her alive through her Great Depression, she says with candor, and now she needed it again: She pictured herself running up that mountain to help her once again fight for her life.
Approaching cancer treatment like a triathlon
Cancer is never convenient, but this slap in the face sure stung. Lindley was 50, at a time when many settle into a midlife crisis, she felt settled and happy. She’d met a woman, Rebekah Keat, a professional athlete she called the love of her life. They lived near Boulder and she was coaching Olympic medal-winning triathletes and speaking for Tony Robbins, the motivational speaker who helped her through her tougher times. She had been the best in the world, as a triathlon world champion in 2001 and a hall of famer in 2014. She was finally free of her anxiety and obsessive-compulsive disorder.
Now, in 2019, doctors were telling her she had less than a 10% chance of surviving. Sure, the odds were much lower that she would become a world champion after that first swim, when she nearly drowned. But even the most resilient people don’t exactly want to hear their chances of living through a disease are slim.
But there was one doctor telling her something else. She had a real chance, thanks to a medical trial Dr. Dan Pollyea would host on the Anschutz Campus of the University of Colorado and UCHealth. Pollyea is the clinical director of UCHealth’s Blood Disorders and Cell Therapies Center and a researcher at CU. He and his colleague, Dr. John Gutman, are considered two of the best leukemia doctors in the world.
Lindley was ready to tackle the treatment the same way she’d taken on the triathlon, with a shot and a prayer and hope.
“I had worked way too hard for my life and where it is,” Lindley said. “The only outcome for me was that I was going to survive this. I needed to show up and do whatever it took.”
The day after Pollyea contacted her, she drove to Anschutz to begin treatment.
Triathlon proved she was worthy of life
Lindley remembers feeling a strange sensation in her car as she waited for her training clients to finish their races at the Ironman World Championships: She felt exhausted.
Lindley knew how to be tired. One of her coaches, Brett Sutton, made her bike 20 miles down a mountain, then swim 3 miles, then bike back up, then later, that afternoon, run the same course. But she never seemed to let herself get too tired to quit training. Triathlon was the only way she knew to prove to herself that she was worthy of love, of acceptance, and yes, of life.
Lindley played field hockey, ice hockey and lacrosse at Brown. The time she spent on the grass and the ice helped her cope with anxiety and OCD and her attraction to women. She grew up in the ’80s, when being gay was still unacceptable to many and some people still called AIDS a gay disease, as if to say they deserved the horrible deaths so many of them suffered. When Lindley finally came out, her father, a man she worshipped, told her they would never speak again.
This is why she chose triathlon. She needed to redefine herself.
“I’d always been a team sports person,” Lindley said. “But what I needed to know was that I would be OK on my own. I needed to feel safe in my own skin.”
So why did she feel not only tired but exhausted? She couldn’t handle the heat. Maybe she was just getting older, she thought to herself, and pointed to her upcoming hip replacement as proof.
When doctors did some blood work to prepare for surgery, they came back with some weird news: She had zero white blood cells. The leukemia diagnosis soon followed.
She lobbies so have the same chance to live
Acute myeloid leukemia is a cancer of the blood and bone marrow. It’s also a nightmare, a cancer so potent it has the ability to evolve, seek and destroy in days, as if it were flesh-eating bacteria. Even though she was just diagnosed, Lindley would learn, later, that had she not raced to Anschutz, she could have died in a week.
But diseases like that are why medical trials exist: conventional treatments don’t always, or even usually, work. And it’s why UCHealth is working with Lindley and the Leukemia and Lymphoma Society to lobby for U.S. House Bill 3503, which would, they believe, increase equitable access to them.
Trials are, essentially, experiments with human subjects, which is why there’s a laborious process to get them approved (Pollyea said dozens of UCHealth employees can work to get just one trial approved) and an even longer process for them to become an accepted form of treatment. But there are also many times that they’re the only hope for patients. This was especially true for Lindley’s nasty leukemia.
“It’s the most aggressive, and historically we haven’t made much progress because the challenges are so great,” Pollyea said. “But we haven’t changed the way we’ve treated it for 50 years.”
Pollyea felt especially good about this one as a researcher and a doctor, and here’s why: Most of the time, drug companies approach doctors and ask them to try a new product out on patients.
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Innovation is always important, Pollyea said, but the downside is you’re carrying out the agenda of a drug company ultimately hoping to make billions. In this case, Pollyea had a promising treatment and asked a drug company for help.
“Those are the ones we get more excited about,” Pollyea said. “In my experience, those have higher rates of success.”
His treatment targeted the stem cells of the cancer, rather than just try to kill as many cells as they could.
“The older treatment mows the lawn,” Pollyea said. “This pulls out the roots.”
Trials are a risk for patents: They forgo proven treatments for ones that may not work. Lindley didn’t seem to have much choice, but she still had 10%. She was willing to risk it.
“Clinical trials are a leap of faith,” Pollyea said. “It requires a ton of trust between patient and provider. That’s not easy to gain.”
New drugs are just a start to helping others
It turns out that being the best triathlete in the world is not as therapeutic as Lindley had hoped.
The sport gave her a much better life, and it did provide some much-needed self-esteem, but it didn’t solve most of her struggles with her mental health. The diagnosis changed that.
“I needed to sweep out my soul,” Lindley said. “I needed to forgive myself and fill myself with life and gratitude.”
This newfound grace for herself helped her realize, pretty early on, that her wife would still love her, even after she turned bald and took time off from winning races and coaching champions.
“She loves me for who I am, for my spirit,” Lindley said. “What a gift.”
After two decades of estrangement, her father was back in her life, even before she got sick. But she also needed to forgive him. When she talks about it today, she tempers the pain of the rejection with an understanding of time periods and upbringings.
The medical trial, she believes, helped her see the chemotherapy as something that was saving her, rather than poisoning her, even if, technically, it was both.
“I remember saying a prayer with my wife and thanking the chemo,” she said. “I thought that was really important.”
She was, after all, grateful for the chance. She knows today that she was one of the lucky ones, despite such a bleak start. That’s something she hopes to change through her lobbying with UCHealth.
“Clinical trials are not representative of the whole population,” Pollyea said. “They are for people who can get here and have the resources to stay here. It restricts the population who can participate. We need to do a better job of finding more representation of the population as a whole.”
That’s what the proposed legislation would alleviate, Pollyea said, by reducing some of the financial barriers. Even if trials are free, there are more medical visits, so maybe more trials could offer patients flexibility: They could take place where the patients live, rather in one specific place, for instance, or allow those medical visits at their local hospital. Maybe the legislation could also offer stipends or increase financial resources for patients with lower incomes.
There’s some real medical concern beyond just making it easier for patients, Pollyea said. There aren’t many people with unlimited resources, and yet that’s who medical trials favor, meaning the crucial data collected from the trials could be skewed.
“If we can get a drug across the finish line, but it’s biased to a certain part of the population, then it may be a waste of effort for everyone,” Pollyea said.
In this case, the trial appears to have worked beautifully. Pollyea believes he may have found a future in treating a terrible form of leukemia that left most patients feeling helpless. Lindley is alive as a result.
“It’s almost like a time machine,” he said. “She was able to fast forward to an era where we can provide an effective treatment.”
Lindley is cancer-free and has a new outlook as well as a new life. Now she can do sports because she enjoys them. They are affirmations rather than requirements for feeling worthy.
“When I feel my heart pounding,” Lindley said, “that is a sign of LIFE.”
On her one-year anniversary of her bone marrow transplant, the final typical step to dismissing leukemia from a body, she went to the mountain trail up Lyons, the one she visualized when she was feeling her worst. She ran up, up, up the dirt, breathing the vigor in and out, and listened to her wife’s voice laughing beside her as she bathed in the sweat and the gratitude for what her body was doing for her yet again.