Family is everything to Evelyn Schwandt.
During medical checkups, her husband and their two adult daughters come along to provide a cocoon of support.
As Schwandt, 55, has navigated a tough path of first getting a blood cancer diagnosis, then unrelated ovarian cancer, she has found a medical expert who fits right in.
“Lindsey’s like an adopted daughter. She’s part of our family. In the beginning it was scary. I didn’t know much about my blood disorder. Lindsey made us feel comfortable. It wasn’t so scary after talking with her. She’s so kindhearted and warm.”
Schwandt is speaking of Lindsey Lyle, her physician assistant, and an expert on the rare type of blood cancer that Schwandt is dealing with called myelofibrosis.
Unexplained exhaustion and pain
Everything had been just fine for Schwandt until about 2 ½ years ago. Her husband served in the Air Force for 25 years, working on jet maintenance. The Schwandts loved living around the world, especially their four years stationed in Hawaii near beautiful beaches. They then moved to Colorado Springs where their back yard looks out over open space to a stunning view of Pikes Peak.
Along with her family, Schwandt loves spending time in her garden with her dog at her side.
Her first symptoms of any problems were anemia, unexplained exhaustion and swelling in her spleen.
That’s when she learned she had blood cancer. Thankfully Lyle is an expert in the rare group of cancers known as myeloproliferative neoplasms or MPNs.
Creating communities for cancer patients
Originally, Lyle planned to specialize in pediatric leukemia.
From the time she was a little girl, she always knew she wanted to work in medicine. Following a traumatic childhood bike accident, she spent a lot of time in the care of physician assistants, who inspired her to follow in their footsteps.
After graduating from school and working at MD Anderson in Texas, Lyle learned about the demand for specialists in adult blood cancers.
“There was an untapped need for advanced practice providers to learn about these diseases because they’re so rare,” Lyle said.
A Colorado native, she wanted to return home after practicing in Houston for a few years. She joined UCHealth University of Colorado Hospital in 2015.
Along with providing excellent patient care and doing research, Lyle is a big believer in creating communities. She has emphasized patient education and helps organize live events. The next one takes place on May 5. Partnering with Patient Power, national experts in the MPN field will gather to educate patients and caregivers on the latest treatment and research advances to help patients make empowered decisions about their care. (Click here to learn more.)
Outside of a stem cell transplant, there is no cure for Schwandt’s type of blood cancer.
“We try to focus on controlling the disease. Reducing potential complications of the disease and improving symptoms. We try to help her have a good quality of life,” Lyle said.
And Schwandt is not yet a candidate for a stem cell transplant, Lyle said.
Lyle was keeping close tabs on Schwandt a year ago when she received a call that concerned her.
A second unrelated cancer
Schwandt had been spending time at a Nebraska farm where her husband, Don, now retired from the Air Force, runs deer and turkey hunts each spring.
The farm sits on prairie with beautiful river bottoms snaking nearby.
“It’s nice to get out there with our dog. It’s peaceful and quiet,” Schwandt said.
She served as the cook, dishing up big meals for her husband and his clients.
During last May’s hunts, she felt more tired than usual. And her stomach was hurting for two straight weeks in a way that was different than before. Schwandt finished up the hunting season, left Nebraska and called Lyle as soon as she was back home.
Lyle was concerned and immediately put in an order for a CT scan late on a Friday at UCHealth Memorial Hospital Central near Schwandt’s home.
There, doctors found a buildup of fluid, but they couldn’t immediately figure out the source.
Schwandt decided to follow up with her regular team in Aurora on Monday. As soon as her hepatologist, Dr. Gregory Everson, saw her, he knew she needed to be admitted. She then had to endure nearly two weeks of terrible pain as doctors drained the fluid and worked to identify the cause. The culprit was totally unexpected: ovarian cancer.
Lyle said there’s no connection between Schwandt’s blood and ovarian cancers. She has searched the literature and found only a handful of other patients who have both. There’s no indication that one type of cancer increases the risk of getting the other. Schwandt just experienced a “lousy coincidence,” said Lyle.
She has been quite healthy, active and upbeat all her life, but unfortunately cancer runs in her family.
She had no choice but to rally and fight the ovarian cancer too.
An unexpected outcome
Schwandt’s ovarian cancer specialist, Dr. Bradley Corr, teamed up with Lyle to figure out safe treatments that wouldn’t interfere with Schwandt’s blood cancer.
They couldn’t do surgery because they worried about excessive bleeding. So they opted for chemotherapy and gave Schwandt a lower-than-normal dose.
After six months of treatments, remarkably the evidence of ovarian cancer in her body had disappeared.
Schwandt said Corr was stunned and emotional when he delivered the good news.
“He was surprised at how well it worked,” she said. “The cancer is not cured. Sometimes it comes back. But for now, it looks good.”
Now, she and her family once again are focused on keeping the blood cancer in check.
A go-to medical guide
Throughout her ordeal, Schwandt said Lyle has been an exceptional medical guide and supporter.
Schwandt was so appreciative that she nominated Lyle for a national MPN Heroes Award that Lyle recently won.
Schwandt told the judges that Lyle always goes above and beyond.
“She takes her time explaining everything about MPN… in words I clearly understand. She listens to me and has so much positive attitude that it rubs off on you. I look so forward to seeing Lindsey’s smiling face every visit to help keep me upbeat.”
When Lyle learned about Schwandt’s comments, she burst into tears.
“I was so touched that she felt comforted by things I had done for her,” Lyle said.
“This was a huge revelation to me. I have always been someone who tries to be excellent at what I do. I love research. I try to publish papers. I try to educate people and be the best academically and professionally,” she said. “The list of accomplishments I have doesn’t matter nearly as much as making a difference in one person’s life.”
“It’s the relationship that you form. Ultimately someone is relying on you to get them to the next day,” Lyle said. “That’s very humbling.”
She said she’s certainly not a hero.
“My patients are 100 percent the heroes. It’s tough. They are dealing with this day in and day out. That’s why I do what I do and try to provide them with the medical care as they go through their journey.”
‘The glue of the family’
During a recent visit to University of Colorado Hospital for an infusion and a checkup, both of Schwandt’s daughters and her husband came along as they often do.
Annie Porter, 34, lives in Hawaii, but flies in as often as she can. Amy Schwandt, 33, lives with her parents to keep a close eye on her mom and help with the garden.
“She’s the glue that holds the family together,” Amy said of her mom. “She’s our favorite person in the whole world.”
Porter smiled and nodded.
“No matter what has happened, she’s never been one of those negative people. If you met her, you would never even know that something’s going on. She’s just a really strong person who keeps moving forward.”
Don Schwandt chimed in: “She’s our rock. She keeps us strong. We might all be falling apart and she has a sense that everything’s going to be OK.”
Evelyn Schwandt’s confidence in her medical experts and her bond with Lyle, in particular, makes the struggles a little easier.
“There’s a sense of peace and calm. The people who see her actually care. You aren’t just a number. You’re a real person with real value,” Don Schwandt said.
Evelyn Schwandt keeps embracing life, family, trips to sunny beaches and pretty days at home.
“I love my pots and my flowers,” she said. “I can sit out on the deck and look at the view of the mountains. It keeps you upbeat. “
On tough days, their yellow lab, Cubella, curls up close with Schwandt.
And always, Lyle is in her corner.
“I am so thankful she is my provider,” Schwandt wrote in the award nomination. “We all love her: our angel and gift from Heaven.”