Hey y'all! Here's my story -
In June of 2018, this past summer, I began a journey unlike any I've yet to experience. On a Thursday like any other, I woke up, drove to a doctor's apointment, and suddenly began to feel tired. For about 30 minutes I lost my ability to speak, read, and the right side of my face, cheek, and arms went numb. Thankfully, I wasn't unfamiliar with visits to the ER, so off I went at the advice of an EMT and just as I had suspected they said that everything looked fine and that I should probably check in with a nuerologist sometime after the ER visit.
Fast forward a few weeks. I had seen a neurologist who had ordered for some basic tests and brain imaging. July was just a few days away and I was heading back to the office to see the results of the testing. The doctor brought my MRI results up on the screen and I think it's fair to say that we were all expecting to see the same thing, a brain. So, when the doctor started to stare at it with a confused look, I realized that he could see that something about it wasn't right. He hopped on the phone with the head of the practice and I had an appointment with a brain surgeon at Jefferson Hospital just a few days later.
I had an epidermoid cyst and from the imaging, it looked like it was sitting on my brain stem, as well as close to some very important nerves.
I researched for the next few days online and my angel of a Mom got me a very last minute appointment with a brain surgeon at the University of Pennsylvania. I met the surgeon, who had done close to 100 of these cases, which impressed me considering epidermoid cysts make up 1% of all brain tumors. The conversation was honest, and he told me everything that I had coming, worst case scenerio. He also told me that he had a daughter close to my age, and promised me that he wouldn't be the reason that I didn't get to accomplish anything and everything that my future holds, even if that meant he wasn't able to get the whole cyst.
I had my surgery on July 20th. It lasted 10 hours. In total, my recovery in the hospital lasted for two weeks. It took me about a week to open my eyes due to some nasty double vision. I had to relearn how to walk, but I was adamant that I would figure it out. Walking on my own took about a month and a half. The only long term side effect that I have is hearing loss, but considering the long list of side effects that I could be dealing with, I would consider myself pretty blessed. My surgeon was incredible, but unfortunately he couldn't get the whole cyst without causing serious long term damage to my body, and had to leave about 10%. He wanted to keep his promise, and as a 22 year old with so much I want to accomplish, I thank him.
As recent as this all is, I try hard not to think about what my future holds, and living in the present has a whole new meaning. That being said, who knows what my future holds ten years from now? Best case scenerio, I get to live my life knowing that 2018 was the year I had a bump in the road. Worst case scenerio, this tumor grows and I have to get another surgery and do this all over again.
With your help, I may not have to. I remind myself all of the time that I have no idea what my future will bring, or what kind of research/medical breakthroughs there will be over the next decade. Hopefully, I will be far away from a hospital living my best possible life. Please consider donating, walking if you're near Dallas, and even if you can't walk, be a virtual walker -the more the merrier!
Thank you in advance for your support of our efforts on behalf of brain tumor patients, their families, and the researchers pursuing the breakthroughs.