Now, I’m not sure if you realize this, because I was shocked at the people who immediately think that even though the mass isn’t cancerous, it’s safe.
Hold your hand up if you realize there is only so much room inside of your skull for the brain, veins and fluid. My little non-harmful growth inside my brain is wrapped around my optic nerve, carotid artery, and pushing into my pituitary gland. When I say wrapped, that’s a loose term. What the Neurosurgeon explained it as, was lava flowing down and around the optic nerve into the cavernous sinus (fancy schmancy words, huh)..
We were told removing it in any way, would be detrimental to my life. There are so many factors to take into consideration where my intruder was concerned. The carotid artery being involved was one of said factors. Not to mention, depth, risks of infection, yada, yada, yada, yada, yada.
So who’s had an MRI, who’s almost wrecked the machine when it locked in place because they’re uncomfortable in tight places? You guessed it, I must be drugged, and have every accommodation known to man to be in the tube, or at least to begin with. That fear and total disregard for my own safety has lessened a bit each time I go in one. And 33 treatments of radiation have made it a bit more tolerable for the head scans anyway. I’ll get into the other scans later.
When my world was getting all topsy turvy, I was still dealing with the rumors and telling stories out of school scenarios. Still feeling like I had lost control of the situation and regretting letting anyone know, I was still feeling betrayed and was spiraling. But in the end, I wanted control. I felt like everything was out of control, I had no say in anything. My choices were taken away. They told us the gremlin in my brain was inoperable. I asked if they could just yank my eyeball out, tumor with it (they did say it was wrapped around the optic nerve) and replace it with a disco ball or laser pointer eye. I think the neurosurgeon was stunned for a whole 13 seconds, he cocked his head to the side, as if he was considering locking me away permanently or wondering if I was kidding. I wasn’t kidding. If it would save my life, take my eyeball, I have two.
No go on that. Another option or choice taken away.
It can’t be operated on, it can’t be removed, it can’t be replaced.
That decision was also taken away, when my case went in front of a “Tumor Board” of the top Drs in their field to see if I was a viable case for removal of the hobgoblin residing in my cerebellum. Another thing I couldn’t control. Life sucks, it isn’t fair and why is it always me… right?
I say those things because I felt cheated.
Skin cancer: remove that section and have a graft if needed.
Breast cancer: take them off and get new ones if you choose.
Ovarian or uterine cancer: yank it out.
I know this is a simplification and doesn’t apply to every situation. But in the moment, in my mind, that’s how it felt. I felt like life had kicked me in the teeth again and this time it wasn’t even going to let me get a kick in to make myself feel better. How unfair can life get, never ask yourself that question.
I am honestly both ashamed and not ashamed at the same time for my feelings. I am of course allowed to have feelings on the subject. But how do I explain to people that I have something that can drop me to the ground tomorrow?
“Oh, its benign, that’s good right?”
How much extra space do you think is available up there? And how do you look someone in the eye and tell them that they look fine when their whole world is uncharted?
How do you explain to family who basically blow it off that you are a walking time bomb. No, I can’t do the things I used to do. No, I can’t just pop on a plane and go here or there. I can’t just jump in my truck for a road trip. There are other mitigating factors now that those concerns are out there, but I feel like a never ending story of “what the actual hell”.
Stay tuned for my off the wall, ‘odd duck’ decision that got double edged reviews.
