Cancer Story: Part One
How many of you started your Freshman year of an all-girl high-school, walking around with a blue hemorrhoid pillow around campus?
Probably not very many. Please laugh all you want, as I was, and still am, laughing at myself!
During my grade-school years, I was a top athlete, already talking with my dad and coaches about obtaining college scholarships for softball. I still have the trophy at home where I had a “no-hit” season for pitching. And, no, that wasn’t because I didn’t actually hit A PERSON up to bat…yet anyways…
Gradually, I started to develop bad habits where I could barely get the ball in the strike zone, and I was benched for the majority of the games or thrown into the outfield. My dad paid for coaching, training, and 1:1s with softball gurus, but I could never seem to get back to my talent. We blamed it on awkward growth spurts, and new lanky body that wasn’t quite filled out yet.
Going into high-school, I started developing a sharp, knife-like pain through my lower back and butt, and shooting pain down both legs. Every speed bump, pothole, and curve in the road felt like someone stabbed my entire spinal column from the tailbone up.
Both my parents have backgrounds in medical fields, and knew something was very wrong. They advocated for me to see a specialist, who recommended physical therapy, with a hypothesis of a broken tailbone. When PT failed to alleviate the pain, my mother advocated unrelentlessly and finally scheduled an MRI and CAT scan. It only took one MRI to see that I had a grade 2 Ependymoma tumor that was attached to my spinal cord and snaking its way up my lower lumbar spine, tangling into my nerves. My spinal cord surgery was scheduled for the very next week with one of the top neuro-pediatric doctors in our city, Dr. T.S. Park.
Being a 14-year-old, you don’t quite realize the implications of what a spinal surgery entails, nor the ramifications of long-term quality of life if something goes wrong... paralysis, incontinence, permanent nerve damage, loss of sensation, and sexual dysfunction are just to name a few. We scheduled a visit to St. Louis Children’s Hospital, and went through with a 6+ hour surgery, where Dr. Park delicately unthreaded the tumor from it’s new home. I have hazy memories of waking up right after surgery and my dad standing right in front of me asking if I could wiggle my toes. My toes wiggled on demand, with no effort required and all was well.
Cue the start of my first-ever, medically-induced menstrual period with my third grade teacher and my dad. I couldn’t move in my hospital bed and had to have a nurse change the bloody sheets and put my first pad on in my underwear while my dad awkwardly stood outside the room, probably shaking his head in embarrassing laughter.
I went back to a completely “normal” life, with my blue hemorrhoid pillow, where I was working within two weeks and back to school, only now with learning kegels to try and repair the nerve damage in my lower back to help with incontinence. Dr. Park left us with the knowledge that he was not able to remove the entire tumor, which might lead to a recurrence in the future. My family took me to every single one of my MRIs, starting out every 3 months, then moving to 6 months after no sign of growth, then finally to once per year before life shifted unexpectedly at the beginning of a new threshold in my life.
