Diary of a Spoonie

It’s been about 10 months since I was diagnosed and almost 8 months since radiation. So I’m closing in on the first year mark of having been diagnosed, treated, and now living with a brain tumor. My last set of scans showed no change post treatment to the tumor. The good news is there wasn’t any new tumors and it hadn’t grown. The….not-as-good-news was that it is still there and has not shrunk.

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With all that in mind, the fact remains that I am still living with a brain tumor. I begin this blog with those facts because I’m struggling with the idea that I seem to be the last one in my life (at least in my close circle) to hold on to those truths. It feels like most of the people in my life see it as “Okay, you’re diagnosed, you went through treatment, and we’re on the other side”. But I don’t feel anything like that. I still feel like it’s me and my tumor. I’m still dealing with “is this damn thing going to kill me? Or take away my sight or my hearing?”

I’m still on a lot of meds. More, in fact, than I was pre-tumor. Extended pain relief, break through pain relief, muscle relaxers, sleep meds, allergy meds, thyroid meds, and hell….let’s throw in some anti-nausea meds and migraine meds.

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Oh, and vitamin D, melatonin, flonase, zyrtec, and some benedryl for good measure. This is actually not all of my meds and scripts. (medications and prescriptions for all you non-spoonie types.) Like I said, I am on a lot of medication. I fill 6 scripts monthly, 3 more as needed, and I throw in some over the counter allergy meds and supplements because my vitamin D, potassium, and melatonin levels like to do whatever they want.

I know that I am basically on end stage doses of pain meds. I’m on the kind of pain meds and the doses you don’t come off of. I see my pain specialist more than I see my primary care or any of my other specialists. I had to crack up when I went to see her the first time after treatment. She walked in to the room, looked at her laptop, and then at me and said “I thought your head would be shaved!”. I chuckled and replied “yep, me too, but we’re not there yet”.

I just got allllll the grey I’ve acquired from radiation (did you know radiation treatment turns your hair grey….well, WHITE in my case?) covered back up to my usual red.

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My hair dresser, who has seen my hair grow up from a pixie cut for the last 4 years, asked me how long I was going to grow it. I told her I’d see if I could get it down to my waist for the first time in 20+ years, but in my head it was “As long as I can until they shave my head for surgery”. I’m not scared. I’ll dye it pink and spike it up.

I don’t know if surgery is an option or what’s next. My memory is better, and it’s been a year since I fell down the stairs (knock on wood!), but the twitches and shocks I occasionally get still pop up. My family and friends want to make plans and my mom wants to make travel plans, but I feel like I should get another set of scans before I make any travel plans.

I don’t know what’s coming this year, and I’m reluctant to make long term plans. It’s still me and my tumor…..

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

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