tom & kathy "we got this"
Our odyssey began in November, 2014. I had a backache; it had been growing worse month by month for a while. As a 47 year old entrepreneur with my own candle business, it didn't seem odd to have back pain. But the sleepless nights, the burning, radiating pain from between my shoulder blades, the headaches....were all becoming intolerable. This pinched nerve or pulled muscle was too much, I thought.
My neurologist ordered an MRI to be conducted immediately upon hearing my symptoms. It was the holidays; my busiest time of the year for candle sales, so I had no time for tests and doctor appointments. But, just two days after my first holiday show, on November 10th, I had my first of many MRI's. Within minutes of walking back into the waiting room, my neurologist said those words, "we found what looks like a cancer tumor on your spinal cord".
The weeks and months that followed are both etched with great detail in my brain, as well as a blur of confusion, fear, and a lot of "what if's". It was just two weeks after my diagnosis, as I headed into surgery, Tom and I promised that whatever the outcome, "we got this".
It was an 8 hour surgery that was supposed to last 4 hours. But when you have a tumor that has decided to coil itself around your spinal cord while embedding itself along the way, it becomes an intricate process to divorce the two from each other. Thankfully, I had one of the best surgeons who's specialty was removing these types of tumors from pediatric patients. When asking others for second opinions, we were told Dr. Nagib was the best - look no further. So I was in very good hands. Something Tom kept reminding himself in those agonizing hours as he sat waiting.
I woke to find I couldn't feel or move anything from my diaphragm down. I reminded myself, "We got this". Quietly, Tom and I were both scared at what my upcoming recovery would look like. I optimistically (in my delusional state), thought I would snap out of this and be home in a week or so with minimal damage done, and back to life as I knew it by January. It became clear after a week, when I still could not walk, or even care for myself, I would be extending my stay at Abbott NW Hospital's Courage Kenny Rehabilitation Institute for a month. Happy Holidays!
While being at Courage Kenny wasn't the easiest on us, we managed to keep perspective, and take everything day by day; we did what we could to not get too overwhelmed by it all (and there was a lot being thrown our way in a hurry). I think Tom had it the hardest at this point juggling his own career, keeping up at home, working with friends to keep my business going, our dog walked and fed, and then making it back to Courage Kenny each night so we could have dinner together and share our day's events. Such as the day I was strapped into my wheelchair with the alarm turned on after I was found trying to use my walker without supervision (I wasn't always the easiest patient).
In a month's time, while I still had no feeling (except for painful neuropathy....a cruel irony), I learned how to walk with a walker and crutches. I was able to dress myself again, get in/out of chairs, a bed, a car. I learned how to get around a store, a kitchen and walk stairs. I also learned to never under-estimate the intricacies of any of these tasks. After a month, I was on my way back home to put it all to official good use. And while happy to be back home, I missed Eva, my physical therapist and the rest of my team at Courage Kenny who kept me going, pushed me forward, and kept all real for me so I was ready for anything the outside world might throw my way.
I spent another 8 months in out-patient therapy finessing my skills to the point that within 6-months after surgery, I was starting to walk without my crutch and even driving again. I continue to work each day on my balance and coordination despite not regaining my feeling back. To this day, 16 months later, I still cannot feel Tom's hand on my knee, or our dog's head in my lap. But I have hope.
My official diagnosis was an Intramedullary Ependymoma Grade 2 in my Thoracic Region. The chance of being diagnosed with this tumor type is 1 in a million. How lucky am I?
I actually do feel lucky. So many with my same diagnosis do not recover as well as I have. The chance of re-occurrence anywhere in the spinal cord or brain varies depending on what mountain of research you want to look at. But no matter the chances, it remains a real possibility in the back of our minds. So Tom and I have a new outlook on life, a new set of priorities we once took for granted. For whatever reason, this opportunity was given to us, and Tom and I intend on taking full advantage so that we can help others faced with the same grim diagnosis to understand and feel empowered to recover to their full potential.
For more information about Brain and Spinal Cord Ependymomas, visit the CERN Foundation at: https://cern-foundation.org