I'm not much of a house keeper, clean yes, tidy, not so much. I should, like others, have a routine, Monday laundry, Tuesday bathroom, Wednesday vacuum, you get the idea. But I don't. Life is just to short to live in perfect houses. I do however, clean like a crazy women when I'm upset, it's therapeutic, calming in a way with a end result you can be proud of. It's also something I have control over, how shinny things look are a direct result of my scrubbing. So for all the people who have asked and the family that have called because there hasn't been a blog post lately, it's because I've been cleaning.
Yes it's been a while, last update was the eye Dr. I've decided against the blurred lines and two pairs of glasses it will be. One for everyday, totally funky fun glasses (kids of course because I have a little pea head) and the second set will be the pair I'm wearing now just with the reading prescription put in. The decision was made that the prism will be etched right into the lens as it was determined that it is still needed. I have been looking through a piece of plastic now since last March, it will be nice to say good bye to that. I'm sad that it's a bit more permanent now. I am however, still hopeful that nerve repair is still happening and maybe, just maybe the prism will be just a memory someday.
So other then cleaning what have I been up to? Well a trip to Nephrology happened the other day. Low blood pressure and kidneys don't get along. Kind of seems like the least of my worries at the moment to be honest. I have my next appointment coming up with my radiation Doc in June which means that May will have an MRI in it. May is also the Spring Sprint in support of the Brain Tumour Foundation of Canada. I'll be there proudly wearing my blue shirt. I've also spent a great deal of time in silence, tall order for a big mouth like me. I have to say that this experience is one that I can't figure out. One thing that I have figured out is when people ask how I'm doing and I try and explain that my brain just doesn't react like it use to, people are quick to respond with "oh yes I know what you mean, that's not the brain tumour, that's old age" I swear if I hear that one more time I will loose my marbles. It's NOT the same. Someone didn't rummage around your brain and suck out part of a tumour. You are not walking around with an invader in your head and if you are then you are saying AMEN sister cause you DO know exactly what I'm talking about. It's like your brain is in slow mode now. Thoughts come slower, words are lost, and the effort it takes to concentrate on something is so exhausting that sometimes it's just not worth doing. Think of your brain as old fashion grey filing cabinets. All lined up, organized by year, by events, by memories and by gained knowledge. Brain surgeons take those filing cabinets and dumb them, hundred and hundred of files all mixed up. No longer by year, no longer by event, no longer by knowledge. It's all in there, I can see it, and I've spent 14 months slowly putting each piece of paper back in it's folder to find it's way back into it's respective filing cabinet. This is work my friends, the hardest work I have ever done and when I struggle for the right word, it is so frustrating I could cry. In fact I did cry this weekend. Remember my attempt at the simple game of BINGO and how my brain just couldn't handle the speed of the game. Well, I tried to play a game this weekend with friends. Simple enough concept, everyone has 7 cards, everyone takes turns having a black card that they read aloud. Those playing gives the best possible answer from their 7 cards to the person holding the black card. If he/she picks your answer, you win the black card. Very easy concept right? The regular brain hears the question and picks from their answers. My brain heard the question and as I tried to read my answer cards I could only get through one or two and would forget the question. As I'm asking to have to question repeated, everyone else has their answers placed on the table and I'm no where close to having mine read let alone a decision made. After one of the players not once but twice just couldn't understand why I wasn't getting it and how many times did she have to read the question, I was ready to go home. Once again, it was evident to me that my brain literally shuts down when it is over tasked. I didn't sleep that night, spent the next morning crying and the entire day in a dreadful mood. It was like I was in mourning, which I am. I'm mourning the brain I had, I miss the person I was, I'm frustrated that my life is not the same, and I'm angry.
I'm glad this happened however, as it brought to me to a major realization. I have been in mourning all this time. I am not the Kelly I was, my brain does not work the way is use to and I have to be ok with that. I have to stop being angry every time someone says "oh you are just getting old" or "I understand." I know they have no clue, so why do I feel the need to tell them they are wrong, all they are trying to do is sympathize with me.
I have tried so hard to be on the positive side of the reality of having to live with a brain tumour for the rest of my life. However, living with the unknown and the fear of the next MRI results is scary. It can bring even the most positive person to a breaking point. I needed to mourn, I needed to get angry and and I defiantly needed to cry. Why? So I could have a clean microwave, come look, seriously it sparkles.
