With the Who & the What & the Why & the How…

This has been the week that everything became really real for me. That might sound a little crazy since I’ve been blogging my way through this experience for the last couple of months, but it’s easy for something so big to remain abstract when the only time you see it is in MRI films. It’s just so absurd to try to wrap my head around the idea that I have a brain tumor. (So to speak.)





But this week I went up for my pre-treatment scans and meetings. So between the fact that I had to go to “Radiation Oncology”, have this crazy mask made for my treatment, and having my mom fly in from the West Coast, it all started to become something more real, more tangible. 

rabbit hole3

It’s just been a bizarre experience to have something that seems to be one of the biggest things I’ve had to try to understand be so abstract at the same time. With the other surgeries and illnesses I’ve had to overcome there was something that I could feel and see and understand. When I was fighting through Pneumonia, I could see my O2 stats drop and I could feel the difficulty I had breathing and the pain in my chest. When I had my hip surgery, I could feel the pain when I tried to walk without my cane and I could see the damage in my X-rays. 

But with something so deep in my brain, it’s a completely different reality as I try to understand a tumor I can’t see being treated by an invisible beam of energy that I can’t feel. Meningiomas are only diagnosed in about 6,500 people a year. Then you take into account where mine is, and the number goes down to about 10 people a year. Maybe. 

It’s a slow growing (typically) benign tumor on the lining that covers the brain, but mine is way down (just about as) deep as possible in my brain, near my brain stem. That makes it rare and inoperable. So my only option for treatment is radiation. Fortunately (much like when I had my hip surgery) there seems to be a newer, more precise type of radiation treatment. CyberKnife is supposed to be the newest and best way to treat a tumor like mine, but it’s still pretty scary stuff. 


No one seems sure of how I will feel during or immediately after treatment. Or what kind of symptoms or long term effects are possible. I did some searching online for patient stories and forums. Big mistake. HUGE. MASSIVE!! I’ve read every experience from “I was fine and able to return to my daily activities” to …..well, the opposite of that.

So, for now, I’m holding on to the idea that this will work. The crazy invisible-laser-beams-of-tumor-destroying will beat the cells that have decided to behave badly into submission. I will be okay. 

And the title of this blog? It came from this song

See you on the other side of the rabbit hole. ~ Xun


Have you any idea why a raven is like a writing desk?

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