I can't believe it's been exactly a year (September 5 2024) since my second brain surgery.I used to have a Brainiversary but after two, it just seemed weird. It was a foggy morning just like it is today. I have not liked foggy mornings since then. It has definitely been the hardest year of my life but I am so thankful I can finally take a deep breath. My last MRI two weeks ago showed the tumor has shrunk even more. My neuro oncologist had a hard time seeing it on the MRI image. Because I am having minimal side effects, my team has agreed that I will be staying on the targeted therapy indefinitely. It's a weird place to be. On one hand I feel safe that I have an option that stops this monster from growing but on the other hand there isn't any magic cure so I can walk away from all of this. The therapy is so new they do not know if it is a cure yet. Some people have had no recurrence for years after stopping therapy.
I still have moments that this does not feel real even after a two year battle. I still feel like I don’t belong in the Brain Tumor Center and someone will come and tell me I am in the wrong place. I still have a lot of frustration around my diagnosis because no one has seen one like mine and the fact that it grows so aggressively when these tumors are supposed to be slow growing. I feel like I don’t fit into any diagnosis category and I am floating somewhere in the rare disease pond. These are all things I will have to work through as I try to heal from two years of almost constant trauma. My biggest accomplishment in this is that my daughter is thriving. Somehow, my husband and I have navigated this in a way that hasn’t caused her damage. Everyday I am thankful for that.
