Welcome: a brief introduction
Welcome to my Brain Blog. It's been a little over three and half years since my tumor journey began. After hearing my story, many people asked if I would write a book about my experience. While I started, I’m finding that it's not the best medium to get my story out the way I want.
Eventually, I will get the whole story out there in some form. For now, the purpose of this blog is to get out the pieces that I think are the most helpful and the most interesting to people in similar or relatable situations. I plan to explore topics like medical negligence, hair loss, and chronic pain. It is my hope that if you stumble on this blog, you find yourself with new perspectives and/or a sense of solidarity. My struggle was unique, but you don’t need to be a brain tumor survivor to learn from it.
When and where my tumor journey began is arguable. My tumor was a very rare Central Neurocytoma, Grade 2. This type of tumor is extremely slow growing, so I was growing it for at least half my life (15 years) by the time it was discovered in 2020. I tell people my tumor “woke up” in April of 2019. I hit my head after falling onto a coffee table and that's when the headaches started. From that moment until September of 2020, I spent several doctor appointments trying to manage the headaches, which only got worse. They were accompanied by face numbness, and I was misdiagnosed more than once. My struggles with medical providers, including complications from the Covid Pandemic, will be the subject of a future blog post.
By the time the tumor was discovered in September of 2020, it had grown to the size of a large lemon and I was “one teaspoon” of cerebrospinal fluid from my life ending. At the height of the pandemic, I was unable to leave the hospital. My surgery was scheduled for September 10th at Rhode Island Hospital and would take 14 hours with multiple neurosurgeons. The good news is that the tumor was removed, but not without complications.
I woke up without the use of my left side. I was sent to a rehabilitation facility to gain functions back, and while my memory and cognition were saved, my physical self would need a lot of work. I learned to walk again quickly, but it wasn’t easy. Stay tuned for more about that.
The recovery process is a long one, and I like to think I am still in it. I am still figuring out what that new “normal” is, including chronic pain and fatigue management. If you explore the rest of my website, you will see that I took steps to reroute my museum career towards independent research and plaque making, which tap into my passion for research and history. As I continue exploring the world through my new lenses, I hope you will join me. If you are a fellow tumor survivor, especially a central neurocytoma survivor, please reach out. If you have a subject you would like me to explore more, send me a message through the contact form! We all have a lot to learn, and I’m grateful I get to share this experience with you.
