Every month, Hermosa resident Julie Engelken puts on her face covering, wipes down her seat on an airplane, clicks her seat belt together and hopes no one sits next to her.
Engelken has a rare, aggressive form of cancer, and she has to take monthly flights for treatment. But the coronavirus is still spreading around the country, and Engelken’s condition makes her more vulnerable to a severe case of COVID-19. When face coverings, meant to reduce viral spread became politicized, characterized as an infringement of liberty, her flights became more nerve-wracking.
“First, they started talking about how scary it was. I immediately started wearing a mask,” Engelken said. “I feel better now because the airlines have finally gotten their act together. You have to wear a mask over your mouth and nose through the entire flight, or you risk being kicked off.”
Engelken, an information technology professional for 25 years, has a rare cancer called clival chordoma, a condition affecting only one in 1 million people. She was born with the tumor, growing on her clival bone near her brain stem, but didn’t realize it until she was diagnosed in 2002.
“My neurosurgeon said, ‘You have a very nasty tumor,’” Engelken said. Nasty, she said, because it doesn’t respond to chemotherapy, and once you remove it, it starts to grow back faster and faster.
Cancer is one of eight underlying medical conditions that are linked to more severe cases of COVID-19, like chronic kidney disease, immunocompromised states, obesity, diabetes and serious heart conditions, according to the Centers for Disease Control and Prevention.
One United Kingdom study estimated that 1.7 billion people in the global population, about one in five, have at least one underlying condition that puts them at increased risk for a serious case.
In February, as the pandemic spread across the United States, people stopped flying, flights were canceled and terminals were like ghost towns. Viral transmission seemed too likely in small, enclosed planes and well-traveled airports.
There might have been four people on a flight from Durango to Denver, and two of them were pilots, said Engelken, whose monthly treatments require flying from Durango to Denver to Los Angeles.
“It was weird,” she said. “For the longest time, they didn’t even tell people to wear masks.”
Recently, there have been a few flights that were completely full. Three times, people sitting near her kept their masks on their chin – which was distressing, she said.
The airport terminals in Los Angeles and Denver posted signs reminding people to remain 6 feet apart, another tool to reduce viral transmission. In Durango, however, airport staff members roped off whole rows of seats. That didn’t help with social distancing as more people began to fly, Engelken said.
“They made me so mad,” she said. “You’re stuck sitting close to people because an entire row of seats is not available.”
Engelken, a La Plata County resident since 2006, has spent 17½ years battling her tumor. Proton radiation therapy knocked it back for four years. Then it came back. Gamma knife radiosurgery took care of it for nine years. Again, it regrew.
“They said I’ve had my lifetime dosage of radiation to that part of my head,” Engelken said. “The least it could do to me is make me totally blind in both eyes, or paralyze me, or worse, kill me.”
She had surgery in 2017. It grew back seven months later. Another surgery, another regrowth three months later.
“(The doctor) said, ‘I’m so sorry. I can’t do any more surgeries. There’s nothing more I can do for you,’” Engelken said.
That’s when she decided to pursue experimental treatment. She joined a human trial with the University of California Los Angeles, which lasts from July 2019 to July 2021 and requires monthly trips.
While Engelken maintains a “glass half-full” attitude, her brother, Bryan Ginter who lives in Arizona, can’t help but worry about the flights.
“With doing that, there’s of course a lot of risks. With her condition, it’s hard. So I worry about her,” Ginter said.
Ginter has done his research. There aren’t many people he knows who have survived that type of cancer for so long. The average survival rate for half of the patients is five years. Fewer reach 10 years. Julie is up to 17 years.
“She’s got that kind of will. She just keeps going,” Ginter said. “It’s in her, it’s her personality.”
He compared her long battle and the current risks she’s facing to the Durango & Silverton Narrow Gauge Railroad, chugging up mountain passes to Silverton.
“I think about the train on the edge of the cliff. That’s my sister going down that track,” Ginter said. “She’s on the edge of the cliff all the time.”
Engelken just sees herself as an average person battling cancer with a glass-half-full perspective. Now, she feels tired all the time and has asthma, both symptoms of her treatment. Tuesday, she once again boarded a plane to Los Angeles.
Even with the virus looming in the background and daily treatment side-effects, Engelken continues on. She has had years of experience coming to terms with her own mortality.
“I’ve come to grips with the whole living, not living thing because I have experienced what I wanted to experience,” Engelken said. “I did see my children grow up. Of course, now I want to see my grandkids. I’ve sort of just come to grips with the fact that everybody dies at some point.”
smullane@durangoherald.com
