I’ll never forget the day my brain tumor was discovered. I worked a full day at my job working with pediatrics in occupational therapy. I didn’t feel well overall, I was pale, felt flush/hot, had a headache, had difficulty swallowing a Tylenol, and had cognitive difficulty completing my documentation & billing.
On my way home from work, I almost hit a truck head on due to difficulty negotiating a sharp curve in the road. Thankfully they beeped their horn and I moved over in the nick of time. After this, I knew something was wrong and had my spouse take me to my local ER immediately. They did a CT Scan and discovered a large brain lesion on the right side of my brain and transferred me immediately to University Hospitals in Cleveland Ohio.
After meeting the neuro team, a neuro surgeon and having my first ever MRI, a craniotomy was planned a few days later. I remember being so scared and confused and was so uncertain about my future. Thankfully I had a successful surgery with no complications or deficits.
Waiting over the next 4-6 weeks for the full pathology report was nerve racking! Pathology revealed I had a grade 4 IDH 1 astrocytoma. Not the news I was praying for. I would begin 30 rounds of proton radiation concurrent with oral chemo for 6 weeks. I tolerated both very well with just some hair loss at the radiation site. In fact, I drove myself to all 30 radiation treatments (3 hour round trip) daily which was a personal goal I set for myself. I am currently completing 5/23 cycles of oral chemo and will begin round 6 of 12 soon. I’m tolerating the oral chemo well with some fatigue at times. I am back to work part-time working with pediatrics in occupational therapy. I feel so grateful to have come so far in my 9 month journey with my brain tumor. I will continue to fight for the best outcome!
I was so uncertain about how I would come through brain surgery & all the treatments to follow. My life was so different with not working for the first 4 months of my diagnosis, surgery & concurrent proton radiation with oral chemo. I was sad for my spouse & teen child to have to go through all the difficult times with me. The support I received from family, friends & co-workers is something that will stay with me forever.
I found a few support groups on Facebook and it was very beneficial to hear long term survivors and what their experience has been years into their diagnosis & treatment. It gives so much positivity & hope to someone like me just starting the journey.
The month of May is so important & heartfelt and it motivated me to want to do something to raise awareness and educate others on the complexity of brain tumors. I planned some events at my place of employment and will wear gray throughout the whole month and plan to share on social media.
There are good days and bad days. It’s a lot to process and the unknown is so scary. You live day to day, week to week, month to month and year to year. And in my case getting MRI’s every 2 months is a whole different level of anxiety.
Being diagnosed with a brain tumor truly changed me as a person. I feel like I want to make the most of my time as a wife, mother, sister, aunt and friend. And I want to be the best at my job for the special needs students I service. I once was a perfectionist. I have learned to let things go and just breath. The small things in life are actually the big things!
