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READ MOREPublished on October 27, 2015 in Share Your Story
I was diagnosed 11 months ago (Nov 2014) with an acoustic neuroma. No, wait, it’s not that, we don’t know what it is. Oh, it might be a facial nerve schwannoma. Oh, no, not that. It’s an atypical hemangioma. Wait, wait, do not do anything yet. We don’t know what it is. It surely is rare. But we will watch it and see if it changes over time. In the meantime, please take these drugs to treat the fullness in your ear and the pain in your face. Oh, and don’t stress over the muscle weakness in your face, it’s barely noticeable. Except when I look in the mirror or at a selfie (frequently).
Since being diagnosed (or not), I find myself reading anything I can find on brain tumors. And trying to pick apart the doctors’ reports that I have and see if there is some word in there that I can cling to that will make sense of this. There isn’t. There are no words. No words to express the emotional roller coaster I have been on.
When the tumor was found (by MRI), I convinced myself that being near MGH and in Boston was the very best place to be. What I had to do to get an appointment with a doctor at MGH was extremely frustrating; though everyone said, “Well, it must not be that serious, if they aren’t in a hurry to see you.” All righty, then, let me put a tumor in your head and see if that sentence helps settle your anxiety. It won’t.
I am nearing the 1-year anniversary of the diagnosis of my “alien” (that’s what I call my brain tumor). I will have a follow-up MRI in November and trust that a plan can be made for treatment. Or plan for another 6-month wait for the next “routine” MRI. I insist that an MRI should never be routine.
In the year since the first diagnosis (after nearly 11-months of treating a non-existent ear infection) I have been on an emotional roller coaster. Mostly with positive thoughts; sometimes with sadness; sometimes with anxiety; sometimes it is with wonder at the brain and all that the medical doctors know and all that they don’t know. I am on a journey to find a healing path for me, knowing that everyone’s healing comes about in different ways.
I wish that I could join the walk on October 25 in Boston. I will be thinking of you all on that day and praying for peace for every one of you who is in a similar situation. Not only for peace, but for courage and strength, and for hope that surpasses all understanding.
Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.
