I was scrolling through my instagram notifications last night and it occurred to me that my life is really weird now.


(Pardon the edit…I was trying to protect people’s personal instas)

I’m in this really bizarre place that means my life now includes words like “cancer”, “cancer planning”, “tumor”, “radiation”, “treatment”, and “inoperable tumor”.

Ten years ago, I was referred to psych because I brought up Fibromyalgia to my doctors as we searched for something to explain the myriad of symptoms I had. Fibro was still in the ‘hysterical, hypochondriac women’s made up crap’ pile, so I had “eating disorder”, “possible addiction issues”, and “anxiety disorder” put in my medical record and my doctor called the psychologist on duty in to talk to me. Fun stuff.

Now, I have physical proof that I’m in pain and I’m not crazy. Yeah, my monthly scripts are kinda crazy, but it’s pretty hard to argue with CTs and MRIs showing cervical spondylosis, a hip replacement, and an inoperable brain tumor. A million scans, six surgeries, more tests than I can remember, and more doctors than I can name later, nobody argues with me.

Nobody argues that Fibro is made up anymore (and for what it’s worth, my diagnosis was confirmed by Rheumatologists at Hopkins), and my “cancer team” (that’s so weird to say) is at Georgetown.

Even my mother used to wonder if I was a hypochondriac. But the further I fall down this rabbit hole, and the more research I do, it seems like it’s entirely possible that between the drugs my mom did in the 60’s, my father’s two tours in Vietnam, and a traumatic brain injury at 7 years old leave me with things that can be argued against less and less. Although I still think the metal-on-metal implant I have in my hip could be connected to my brain tumor.

It’s just such a bizarre place to be. Half of my life online includes cancer support and advocacy.


Even though my Radiation Oncologist, Neurosurgeon, and Neurologist are about 80-85% sure my tumor is benign (something about it being right up against my brain stem makes them reluctant to try to get a hold of it), I still fall into the brain tumor/brain cancer crowd.

So I research. I connect with other tumor patients. And I try to survive.

Along with Β a brain tumor….


Stable, measured….at least I’m in the medical journals?

…I have learned about trigeminal neuralgia, balance issues (ie: falling down the stairs), and seizures (mine tend to be absence seizures instead of the grand mal like seizures you see on tv).

My life is very different now.

This is a weird place to be.



8 responses

  1. Maybe you should try to make friends with your tumor. Give it a name. Talk to it. Then tell it to f*ck off. πŸ™‚

    Liked by 2 people

  2. I hear ya. Do you ever feel like your life isn’t your own? As if you’re sitting on the sidelines watching all of this shit happening to someone else (but it’s actually you)? Maybe this is one of the ways we cope. Dissociating is much more comfortable than the realization that life as I used to know it is over.

    Liked by 2 people

    1. I’ve never felt that. And sometimes, I sure wish I could dissociate. Escape. Go to Mars and become an alien. πŸ™‚

      Liked by 1 person

      1. I highly recommend it πŸ˜‰

        Liked by 2 people

    2. I never thought about feeling like I’m on the outside looking in. Mostly I’m just trying to figure out what the hell is going on. πŸ˜‰

      Liked by 2 people

  3. I too have a brain tumor, but it’s a prolactinoma, which is benign. I’m having surgery on September 8th since I failed the medications used to treat it. And I also named my tumor Mini, because it’s only 6 mm in size! And yes, I empathize with you about life being different now, although my situation isn’t as complicated as yours. πŸ’›

    Liked by 1 person

    1. Good luck with your surgery. And enjoy the drugs, if you can. For boredom during recovery, may I suggest The Walking Dead? Then you can say, well, at least I’m not a zombie. So long, Mini! πŸ™‚

      Liked by 2 people

    2. Wow, a fellow tumor spoonie! This blows, but it’s nice to hear from someone that gets it. Mine is a tentorial menengioma (although it has been brought up it might be a spinal menengioma, but they can’t tell because it’s literally right at my brain stem on the 5th cranial nerve) and it’s 16 x 4 x 6 mm. I had 5 days of CyberKnife radiation. They say it’s equivalent to 30 regular radiation sessions. (Is there such a thing??)
      I hope your surgery is successful! *gentle hugs*

      Liked by 1 person

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