Friday, July 20, 2018

My Boat Needs A Bung

Once again it's been way to long, so much has happened that I don't even know where to start.  An MRI result I wasn't expecting is probably a good place to begin.  Growth!  The word no one with a brain tumour ever wants to hear.  "Your tumour has started to grow" were the words I heard from my annual MRI.  Sadly there's no room for my tumour to grow in my head, it's in a tight little spot in there already.  Honestly, is there room in anyone's head for a foreign invader?  I remember staring blankly at my radiation oncologist thinking all this time he was the guy I had in my back pocket, the just in case guy, the guy who followed me after surgery but I would never need because I'm only 45. Now this guy is my best friend, my new fixer of all things, the guy holding the tablet with my glowing brain tumour shinning brightly like a star.

Radiation was something I was well aware that could be in my future I just didn't think it would be a mere 5 years after surgery.  We have conversation about making the mask, starting the treatments, how many there would be, ohh ONLY 25!!! Dear lord!!  "The team" got together and decided that the remainder of my tumour was still not a candidate for additional surgery so radiation it is.  I said to TJay I'm not sure what freaked me out more, having to have radiation or a group of health care professionals gathered around a table looking inside my head via their tablets.  I felt kind of left out of the party even though I was the star of the show.

So I put my big girl panties on, had my mask made and showed up for my first treatment in bright red Tom shoes.  Because if I have to start a hellish journey I'm doing it in style.  My first treatment I felt a little drunk after but I made it through.  Having your head bolted in a mask to a table is truly not my idea of anything that resembles fun but I did it and we left.  Day 2, lets get on with it, day 3, this kinda sucks a bit, day 4, I feel kinda of crappy and what are those weird lights I see during treatment and what is that smell?  Day 5 I'm in tears I'm so sick.  The thought of my head being attached to that tables and possibly throwing up is too much to handle.  They won't start my treatment until I see the Doctor.  Did you know they have great drugs that instantly take away nausea?  And from that day forward I take Omeprazole, Dexamethasone and Ondansetron.  I make it to to day 25, in which they say ok see you in 6 months for your 1st post treatment MRI. Don't expect any shrinkage, in fact don't really expect that at all, we are simply hoping it stops the growth.

I'm now back to MRI's every six month.  My second one after treatment will will August 22, 33 days from now but who's counting!  I'm going to assume this one is important as it's been a year since treatment ended.  I pray it's still stable but my gut tells me something is up. Sometimes my gut and my fear/anxiety get confused but I think hey! Prepare for the worse then if it's good news I can relax. I come across as having it all together, a pretty stable brain tumour patient  but really I'm a barely functioning nervous wreck who seems to be the one who holds everyone together when I'm the one who is falling apart.  But you see I can't fall apart, if the person in the sinking ship panics, all those who are floating will simply loose it.  So I continue to bail out my boat.

Tuesday, October 25, 2016

Tall Latte With Room For Dairy

Seriously, what the Hell?  I've been spinning out of control for months and I can't seem to put the breaks on.  My body on the other hand has been screaming at me since September, today's the day I listen.  Not much choice really, it's all I can do to get showered.  (which I still haven't done yet today and totally skipped that task yesterday.)  All I've heard for days now is how tired I look.  I don't recognize the person in the mirror, she's tired and old.  It's certainly not who I think of when I visualize myself.

Winter:  I hunkered down in my world of "why" and "I'm going to fix this" with my giant plan of trying to help myself.  Maybe I'll see if I can take a class, get my brain working, get some self worth. I got permission from my Doc to take something small if I want, nothing that is going to stress my mind.  The process of just looking into this is exhausting, I can't do this and I give up.

Spring:  Im pushing myself to accomplish more.  In my world that's sweeping and washing the floor in one day.  I push myself to try not to nap, perhaps it's a habit I've gotten into.  This proves to be one of the stupidest self experiments I've ever tried and I suffer.  Terrible headaches, confusion and exhaustion take over.  I'm truly a dumb ass!!  I spend the spring and summer hearing "Mom, you already said that" or "mom you said car not ketchup, you mean get the ketchup"  I look at them as if they think I'm stupid. I did not say get the car from the fridge.  Then everyone in the house agrees, yup mom you said car, get the car from he fridge.  This starts to happen several times a day, with any weird combination of words.
Im now not interested in seeing anyone because I feel like I've gone from an intelligent individual to a dummy.  There's a safety in screwing up in my own home, so I don't go out and when I do I don't talk.

Summer:  I hate summer, the heat takes my head and turns it into a giant throbbing mess.  My kids are so overbooked with work I can't wait for them to go back to school to get a break.  However, I can't lie, the AC in the car is a welcome relief.  No word of a lie, I got in my parked car and sat there with the AC on just to cool my overheated body down.  I swear I lost my internal thermometer, and if one more person tells me that's menopause I'm going to punch someone.

Fall:  A visit with an old friend.  Amazing what that does for the soul.  I spend that time asking questions that are carefully planned in my head so that I don't have to talk much.  I get to listen, which I loved, but won't lie it was planned.  I spend the next day sleeping a lot.  T Jay gets frustrated with me.  Just be Kelly with a brain tumour, stop trying to be someone your not.
A loss of vision again but very different from the other two times has me freaked out.  The two times prior to this were before I was diagnosed with my brain tumour, before I had surgery.  I trip to the eye doctor shows my eye has gotten worse again.  sigh!!
A four hour test at the hospital totally unrelated to to my eye proves to me that the amount of people, the bright florescent lighting and the complete chaos of that place is WAY to much for me to handle.  I sleep the next day.
A trip the other day to Starbucks with T Jay and my daughter proves that my comfort level around my family to be  real and I let me brain repetitive behaviour guard down.  Normally when I say a word wrong or go someplace like this to order something, I repeat the words in my head about 10 times over and over again so they come out as they should.  This day I said to the gentleman in Starbucks, I know exactly what I want, a tall latte, room for dairy.  He stares at me blankly, ummm a latte is made with milk. I stare just as blankly back at him, I want a tall pike, room for dairy.  My daughter, "mom you said latte", the Starbucks guy, "yes you said latte" and I in my moment of feeling like an idiot once again, said ohh well I would like a pike please, a tall pike room for dairy.  As I pour my cream and sugar in my coffee I find myself saying tall pike room for dairy, tall pike room for dairy, tall pike room for dairy.