On May 8th Carrie Matczynski will celebrate four years as a brain tumor survivor!
A craniotomy doesn’t seem like it should be a cause for celebration. The vision of having your skull sawed in pieces to expose the only thing that protects your conscious reality makes you want to shudder, not cheer. For Carrie Matczynski, a corporate finance consultant from a suburb of Chicago, the observance marks the day she regained a grasp on life.
“For months, my friends and family watched me deteriorate as a person,” notes Carrie in frustration. She experienced forgetfulness, her speech slurred, and her balance was so off that she kept falling. “The biggest issue was incontinence which didn’t make any sense given I have never had kids or prior bladder issues.”
The months turned into years, and doctor after doctor turned up empty. Carrie recalls with disbelief, “As of January 2018, I was a 46-year-old woman wearing diapers” with no cause or reason to be found.
The Doctors Threw Their Hands in the Air and Came Down With a Brain Tumor
After more than two years of odd and unsubstantiated symptoms, Carrie’s doctors threw their hands in the air. “The tumor was found by accident because the doctors didn’t know what they were looking for,” Carrie remembers the day she received the news after a slew of lucky MRIs run from head to toe.
“In late April of 2018, I found out I had a massive meningioma brain tumor in the right temporal lobe growing for about 10 to 15 years,” Carrie notes, shocked by the revelation, but relieved by the explanation. Several neurosurgeons told Carrie that the tumor was pressing on her carotid artery and could cause her to stroke out if they didn’t do the six to ten-hour surgery right away.
Carrie and her neurosurgeon scheduled the surgery for May 9, 2018. However, her condition went downhill quickly during a pre-op party her friends threw for her a few days before, and the situation became dire. Carrie’s emergency surgery would be on May 8th.
A Six Hour Surgery—A Lifetime of Hope
The six-hour surgery went well, and after a few days, she moved to The Shirley Ryan Ability Lab for inpatient rehab. As she was leaving Northwestern University Hospital, her Neurosurgeon, Dr. Chandler, stopped her at the door and said, “I want to see you doing an Ironman again.” After completing Ironman Wisconsin in 2015 with an overall time of 14:09, Carrie earned the title while hosting a massive brain tumor choking a cerebral artery.
The words caused Carrie to beam with excitement, but the reality was sobering. She had trouble walking for weeks as she explains, “My feet felt foreign to me, so it was difficult to navigate turns or step aside if someone came my way.” She underwent extensive rehabilitation seven hours a day for seven days a week to regain her movement and memory. At night during her free time, she would do laps in her wheelchair around the track in the rehab center.
Wheelchair to Walker to Jogging in a Month
Carrie went from wheelchair to walker in a matter of days and jogging within a month of brain surgery. She describes how her neurosurgeon was speechless to hear, “I was in a harness, and it was only two minutes to start.” A few minutes that felt like a marathon was the beginning of her journey back.
Carrie was discharged home with her memory and mobility improvements and incontinence gone. She made each minor step motivated toward the ultimate goal and her sights high. “I dropped out of Ironman Arizona in 2017 halfway through the marathon,” describes Carrie of the pain from her undetermined symptoms were too much to bear.
She was determined to get back in 2019 to finish what she started and prove Dr. Chandler right. Carrie found virtual cycling and Zwift in 2017 as a more exciting alternative to Computrainer workouts. When she got home, Zwift became her haven.
Zwift and its Community Was Her Safe Place
Carrie’s doctors wouldn’t clear her to do any outdoor cycling for months. They told her that skull bones would take a long time to heal. ” I was freakishly scared of getting outside, crashing, or just falling, so Zwift was and still is my safe place for sure,” she shares.
In the years before her diagnosis, Carrie gained 70-pounds and lost much of her Ironman fitness. She started slowly back on Zwift but quickly discovered the routes, workouts, group rides, and even dabbled in some races. “The community’s support made me want to cycle more, all the time in fact,” she asserts, “and I would say many people know me because I have ridden so many group rides.”
As the Zwift miles accrued, Carrie’s fitness began to return, and she was gaining confidence. When her doctors gave their blessing, she began competing. She finished third in a two-mile open water swim only three months after surgery. Carrie took a 5K third in her age group four months post-op and completed multiple half marathons a bit after that.
On September 8, 2019, Carrie toed the line for the start of Ironman Wisconsin. In less than a year and a half, she had gone from hopeless and afraid to driven and assured. “Going into the race, I was just so amazingly calm, which is so weird for me,” she shares, “I think I was ready and wanted to get on with it.” Her goal was in sight.
And get on with it, she did. Unbeknownst to Carrie, the conditions on Lake Menona had turned for the worst. She got kicked in the face early in the swim and swam with no goggles for most of the race. “Once out on the course, we had two to three-foot waves for the entire 2.4 miles.”
The weather conditions kicked her square in the face once more on the bike with rain starting about miles 40ish (and had never done those hills in the rain), but she carried on. It wasn’t until mile 13 of the run that the pain of an underlying knee injury became too much. Since that day, Carrie has completed the Muncie 70.3 in 2019 and Chattanooga in 2021.
Carrie’s sights remain high, and her eye is still on the prize—an Ironman finish. For now, she’s happy to celebrate her four-year Cranniversary. Congratulations, Carrie! You’ll always be an Ironman and an inspiration!
For more amazing stories highlighting the extraordinary ordinary individuals in virtual cycling check out the Community page of The ZOM.
Semi-retired as owner and director of his private Orthopedic Physical Therapy practice after over 20 years, Chris is blessed with the freedom to pursue his passion for virtual cycling and writing. On a continual quest to give back to his bike for all the rewarding experiences and relationships it has provided him, he created a non-profit. Chris is committed to helping others with his bike through its work and the pages of his site. In the summer of 2022, he rode 3,900 miles from San Francisco to New York to support the charity he founded, http://www.TheDIRTDadFund.com. His “Gain Cave” resides on the North Fork of Long Island, where he lives with his beautiful wife and is proud of his two independent children.