Sleepless in Naperville.
If you follow Kristin McQueen’s posts on the caregiving site Lotsa Helping Hands, then you’ve already met Stabby Joe.
Stabby’s clinical name is trigeminal neuralgia, or TN, a condition that medical experts agree causes some of the worst pain known to humankind.
Kristin describes Stabby as an “absolute ass” who tortures her 24/7 with a burning, creepy-crawly sensation that dominates the right side of her face. She also feels a continuous throbbing in her upper teeth and long moments of electric jabs aimed at her right eyeball.
Stabby’s been with Kristin since 2006, when doctors administered post-surgical radiation treatments to control the thyroid cancer that half a dozen other physicians had originally missed.
You could say Stabby is collateral damage: a life-altering result of the treatments used to save her life.
Most cancer survivors know this insane pattern all too well. The malignancy may be under control, but now you’re struggling with a host of side effects. But in Kristin’s case, the repercussions have been especially fierce.
Chasing down the pain.
In 2008, surgeons trying to kill Stabby nicked yet another crucial nerve, one that carries sound and balance information from the inner ear to the brain.
When Kristin awoke from that procedure, she couldn’t stop vomiting. A deafening ringing filled her right ear. She fell over whenever she attempted to sit up. She couldn’t walk, much less run.
After a week in the hospital, a physical therapist arrived to help her start the excruciating, months-long effort of learning to walk again.
She ran her next Ironman just 7 months later – an amazing feat – but her gait and balance have never been the same. “If you don’t know my history, you might see me walking funny and conclude I’m drunk,” she says, laughing.
In 2010, a well-respected expert recommended cutting Kristin’s trigeminal nerve, believing this would eradicate her continuing pain. Instead, the procedure left the right side of her face numb to the touch and disabled the corneal reflex in her right eye, leading to further treatment at a specialty clinic in Boston. Docs installed a prosthesis that didn’t fully restore her sight, but at least allows her to comfortably keep her eye open.
In March 2016, neurosurgeons implanted a brain stimulator they hoped would alleviate Stabby’s effects. Just 6 months later, they removed the device when it failed to deliver relief.
Not long after that, an unexplained pattern of insomnia and weight loss showed up.
At one point, the issues seemed related to a painful adrenal tumor – but Kristin has continued to lose weight even after surgeons removed the tumor and the affected adrenal gland.
Whole teams of doctors – endocrinologists, sleep experts, GI specialists – are still working to determine why she’s lost more than 30 pounds in the last year and can’t sleep more than 2 to 4 hours on a good night.
I ask her if, in the wake of these extreme trials, she’s considered dropping out of the 5 races she’s registered to run this year.
“I stay signed up because I need to run,” she tells me. “It’s the only way I can reclaim my body from everything that’s happened to it.”
It wasn’t her first love.
Today we’re sitting under a waterfall of medals and ribbons that hang above the couch in Kristin’s Naperville apartment. This display is only half her haul: the others gleam in the early spring sunlight across the room, next to an oil painting that depicts her running along a waterfront at sunset.
I ask her if she feels she was born to run.
“Oh God, no,” she says. “As a kid I absolutely hated it.”
Growing up in Downers Grove, Illinois, the daughter of a divorced mom who worked at a local church and a police officer dad she saw mostly on weekends, Kristin played basketball on winning school and travel teams. Coaches forced sprints on the girls who got to practice late or talked during drills, which turned running into punishment.
In those days Kristin spent endless hours practicing in her driveway. “If I had a bad day I would take it to the hoop and that was my therapy, my spiritual time, my escape.”
Her junior-high team went 2 straight seasons without a loss, a school first, and she played varsity 3 out of 4 years at Downers Grove North High School.
Being a jock gave her confidence she didn’t always feel in other areas of her life. “I’m really kind of an introvert, but when I walk into a gym or onto a track I’m home. My closest friendships then and now come from athletics.”
But without basketball to open doors, finding friends at the University of Illinois at Urbana-Champaign proved a lot harder.
“I’d screwed up both my ankles by then, and there weren’t many career prospects for women in basketball yet so I decided not to play college ball. Unfortunately, campus friendships centered on partying. I don’t drink and I don’t judge anyone who does, but people just assumed I was antisocial.”
She tried intramural ball, but that scene had its own cliques and conflicts. She started running to stay active, even though she still hated it.
“One day I got lost and ended up going twice the distance I’d been doing. It forced me to get into a rhythm, to keep a certain pace. It felt so different. I thought, Okay, this must be what all the die-hard runners are talking about.”
Finding her calling.
A quiet social life on campus led to outstanding grades with superstar strengths in science and math. Kristin considered a career in medicine but disliked the thought of taking on so much debt.
In 2001, just as physical therapy education was becoming a 3-year track leading to a clinical doctorate, she enrolled at Midwestern University, instantly falling into a close-knit group of grad students who “didn’t give a shit that I didn’t drink. We did everything together … study, hang out, play sports. It restored my faith in friendships.”
Outside of family, Kristin’s school friends and faculty advisors were the first to learn about her cancer. They surrounded her with support during her first two surgeries, helping her get through the final stages of her training.
“It wasn’t easy doing my clinicals with a damaged vocal chord and half an airway, which meant that I could only whisper to my patients!” she remembers. “But somehow I made it through.”
She received her Doctorate of Physical Therapy with honors in June 2004 and immediately took a full-time role with Advocate Dreyer Physical Therapy, later moving on to Newsome Physical Therapy and finally, NovaCare, where she’s still on staff today. But the latest round of medical setbacks have kept her from working more than a handful of hours in recent months.
“It’s hard to accept that I studied hard and prepared for a career I love,” she says, “but now, at 103 pounds, with balance issues and never enough sleep, I don’t always have the focused strength it takes to work with patients.”
In our next post: What Kristin learned when she ran the #1 Ironman in the world -- a summit she swears she'd never have reached without the loving people she calls Team McQueen.
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