Plot Twist. I went from 3 in a million to 2 in a million (actually even more because my tumor is weird and not looking or acting like the rest). It was disguising itself as a colloid cyst but it is an even rarer brain tumor called a Papillary Craniopharyngioma, however, mine is presenting even rarer with an aggressive BRAF cancer mutation.
I suppose I was conditioned over the past couple years to handle this. To see the bright side in such constant devastation. After my reoccurrence, I accepted that this may not be something I walk away from. Oddly enough, there is some hope in all this. They literally just found that BRAF inhibitors have been extremely successful in treating craniopharyngiomas (my tumor is BRAF positive) so if there was ever a “good” time to be diagnosed with this it is now.
At this point, I don’t remember what it is like to live unscathed by disease or who I was before this. This has definitely changed me at my core. I like to think for the good. My therapist and others keep saying, “I’m impressed how well you are handling this” and my response is “It’s all perspective”. So many times I wasn’t sure I would live so being told I can still live a long life (it just may require a lot of scans, monitoring, and procedures) is great news to me. Also, there is comfort in finally getting a diagnosis. It made the last brain surgery totally worth it. I was told it can be a lifelong chronic disease keeping these tumors at bay but I feel in my gut that will change. My faith has been an important part of this and I have a lot of hope that they will find a cure for me.
In other news, I have a new song coming out this Friday so I am focusing my attention on that. I really hope it can help people going through hard times. As always, it’s never a dull moment here on the Sheila Show.
