Living Happily Ever After In A Bad Dream

A question I get asked a lot is 'how do you remain so positive', or 'you are always so positive'.  Well, I'm a firm believer that negative energy is just as detrimental to your health as any crisis diagnosis.  Anyone in the brain tumour community lives MRI to MRI.  In between those MRI's we live our lives.  In general the main stream population doesn't understand brain tumours . Why?  Because it is always perceived as the worse thing that can possible happen to you.  Think about TV shows and movies, I'll set the scene for you.  A patient laying in a hospital bed, they have come in because they fell down, or blacked out or have the worst headache ever.  The room has several Doctors with their clip boards, (or i pads) and they announce "I'm sorry to have to tell you this, but you have a brain tumour"  The camera zooms in on the patient who is in utter shock. It's the incredible dramatic affect to any drama TV show or movie.  (now that I've told you this you will notice it all the time). Every time I watch this on TV I relive my day,  every, single, time!  You see every single day 27 Canadians have that exact moment, they are told they have a brain tumour.

For those who know me will probably agree with the following description, I'm assertive and head strong.  These have been great qualities that have got me through some pretty tough situations in my life. I was known as a brat as a child, but we are talking the early 70's, kids were seen not heard back then...except for me.  This boisterous voice of mine has led me down the path of awareness, determined to speak loudly about brain tumours

and doing my part for 7 years.  Recently, I've been contacted by several people, all looking for advice, help, anything for their friend or family member who has been recently diagnosed with a brain tumour.  T Jay and I were talking last night how staggering this number has been over the past few months.

With all of them I share The Brain Tumour Foundation's website (braintumour.ca ).  I share my phone number, I share my blog, I share our Facebook support group.  I don't have all the answers, I am not the expert, but I had that dreadful day of diagnosis, I had surgery, I had radiation and I continue to walk around with an inoperable brain tumour. It is truly like a bad dream but every single day I get up, I carry on, I conquer whatever life throws at me, why?  Because life is so worth living, knowledge is so worth sharing, and finding your happiness is everything. Once you have a brain tumour diagnosis it is with your for life, completely evicted or not.  You are now part of the statistics that are so critical for funding and research,  you are now one of us, doing your best to live happily ever after in a bad dream.

Golden Treasures Come In Blue

I've spent the last 10 months being an executor.  Not an easy task to deal with someone's assets and their belongings.  You find things they held onto so dearly from the past and all you can do is question the purpose of that item.  Eventually, you figure things out, uncover things, finalize things and make the arrangements for their final resting place, following their Last Will and Testament to the best of your ability.  Now the process starts where I finally get to mourn my Mother.  My relationship with my Mother was not like the relationships I saw my friends have with their Mothers.  It was bumpy, it was difficult.  It's hard to always be the parent when you are supposed to be the child.  However, that was our relationship, the roles reversed for as long as I can remember.  I swore that my children would always have a Mother, not be the Mother.  When I became sick I saw my kids take on a more active role in my care.  I tell my kids I'm good when mostly I'm not.  I want them to be the kids who don't have to worry about their Mother.

When cleaning out my Mother's small apartment I came across one knitted slipper.  My Mother loved to knit.  When I was a child all my barbie clothes were knitted, my socks and sweaters, EVERYTHING!!  I hated it when I was little, now I cherish my knitted blankets.  So finding this one knitted slipper was golden.  Inside the slipper was a small ball of matching yarn.  I took the ball out and set it aside, I slipped the lone slipper on my foot and just like the magic in Cinderella, it fit perfectly.  For those who know me will understand, my feet are tiny, a child's 2.5.  So for this slipper to fit was amazing.  I'm going to say it was made for me because that just makes me feel better.  I never questioned for one second what to do with this treasure amongst the piles and piles of Church donations.  It was coming home with me to NS and I was giving it to the person God was telling me to at that very moment, my dear friend Heather Star.  Heather is an incredible friend, she has been with me through all my difficult times, happy times and scary times.  She took the day off of work the day I had brain surgery so she could see me through it with the power of prayer.  She sat with TJay for the gruelling 10 hours at the hospital, waiting for me to wake up.  I often wonder what TJay and Heather talked about for that many hours.  She's celebrated my children's achievements like they were her own.  We've cried together and also laughed until we cried!  If anyone could knit the matching slipper to my mom's half done project it was her.

Heather came to visit me not long after I returned from my Mother's passing in Quebec.  I handed her the slipper and asked if she could make this into a pair.  She left with the yarn and the one slipper, knowing she had been entrusted with an important job.

Several months had past and I had pretty much forgotten about this project, my head too full of taxes and payments and and and....anyone who has been an executor understands the amount of work that is involved.  Then one day Heather shows up with a pair of slippers.  One as beautiful as the other.  She explained that my mom had taught her something.  She had never knitted the stitch around the opening of the slipper the way my mom did, so she had to learn it.  Amazing how someone can teach even after they are gone.  As I inspected the slippers Heather showed me something so very special about each one.  She said you will always know which one your mother made as the one I knitted I sewed a small blue star inside.  Two identical slippers made by two different people with two very different meanings to me, both equally a treasure.

730 Days of Recovery

2 years ago today I was in the OR having my brain tumour "debulked" I was asked last night if 2 years felt like a long time.  The answer to that really has two parts.  Do I believe it has been two years since I've been off work?  NO, and I think that's partly because when your brain is shaken up like mine, your mind isn't really on work.  That amazingly goes to the back burner, even though its such a huge part of your life when you're in it.  Do I feel like it's been a long time floating around in the medical system.  Yes, a very, very long painful two years.  So in January last year on my 1 year "Craniversary" I wrote a post "365 Days of Recovery"  Today I repeat the blog idea, but with another year of reflection.  Here's what 730 days of recovery look like to me:

That drugs play a bigger role in recovery then I thought.
That having a Neurologist after almost 2 years is a good thing.
That falling through the biggest medical crack has hurt me physically and exhausted me mentally.
That my kids are still just as amazing, thoughtful, kind, human beings as they were 730 days ago.
That the word "Time" is a joke now.
That my eye ball will never have feeling in it nor will my vision correct, those days of wishing and waiting are over.
That you can still have headaches every single day.
That I have more specialist now and I'm grateful for everyone.
That there is a perception in Canada that you have to "accept" the Doctor/Specialist that you are referred to because our Health Care is free.
That not all Specialist graduated from the School Of Bed Side Manners, you don't need that energy as part of your Rock Star Specialist Team, choose wisely.
That these new drugs allow me to think more clearly.
That thinking can sometimes land me in bed from over doing it.
That MRI's are still hateful, and a warm smile and comforting words from an MRI tech can make or break your experience.
That on my 2 year "craniversary" I'm probably more hateful then hopeful.
That I never thought people I've never met in person, only through online support, would become household names.
That people who heal together, band together.
That I would rather own a condo or an apartment than a house.
That one of my true enjoyments of the day is watching the chickadees in my bird feeder.
That having a dog has brought me unbelievable joy even though he bit me.
That I'm extremely grateful that my brain tumour hasn't grown in 730 days.
That my tumour sits at 1.8cm x 1.6cm which is better then 2.5cm x 2.4cm x 2.1cm before surgery.
That there are still days I can't believe I have that blob in my little tiny pea head.
That my Radiation Oncologist classifies 2mm as growth, hmm not much wiggle room.
That once "growth" happens everything gets re-evaluated.
That I pray for no "growth"
That several people have passed away in my life which has me thinking about my own funeral.
That I don't want a funeral but rather a celebration of life.
That I'm aware of how "shockingly" good I look considering...umm thanks?
That as I remember things more clearly, it's like a kid in a candy store kind of excitement.
That I don't expect you to understand that.
That I'm no longer afraid.
That acceptance is a gravel road.
That the cold hurts my head and face.
That Tegretol has finally some what settled my Trigeminal Neuralgia, Thank God!
That I'm still blown away by people who "pop" out of brain surgery and carry on.
That anyone who knows me, knows that's exactly what I thought would happen to me.
That this has been the biggest lesson in human compassion anyone could have ever given to me.
That once again my problems are no different then your problems, mine are just in my head.
That if you didn't laugh at the above line you need more coffee.
That my kids accomplishments make me burst with enthusiastic pride.
That I wish my kids didn't have to deal with such big issues in their lives.
That being said they are the most loving, kind and well behaved kids as they know they are lucky to have their mom.
That my love for TJay has no spoken words other then he is the worst boyfriend ever.
That you wouldn't understand that inside joke but it is the best compliment I can give him.
That not only did TJay bite off 2 kids, but a brain tumour too.
That speaks volumes about the man he is for not "spitting out" that mouthful.
That I cherish this love and nurture it's growth.
That as I type this I get shocked to the face, thanks Tegretol for wrecking my faith in you settling my Trigeminal Neuralgia!
That loosing your hair can freak you out more then you ever thought.
That I get another new Doctor this year.
That I'm shocked to find out I was supposed to have this Doctor all along. (*cough* medical crack *cough*)
That I have a much deeper understanding for the medical system.
That I wish a was a Politician, no a Doctor, no wait a Researcher, to evoke change.
That I've started to ask myself after 730 days-at what point does it go from Recovery to Reality?

                                                                                      illustration by Phil Foster

Media Blitz, Brain Fits

Wowzers what a week.  Monday started off with me being interviewed by the most watched morning TV show in Atlantic Canada, CTV Morning Live.  The thought of live TV terrified me, what if my brain just can't find the words I want to say!  However, Heidi Petracek, the co-host made the whole experience so easy.  She is a ball of energy that you can't help but feed off of.  So pretty much what I had planned to say didn't really happen but I'm pleased with what did end up coming out of my mouth.  Any awareness about brain tumours, The Brain Tumour Foundation and the Halifax Spring Sprint was worth the risk of possibly going mute, crying or even getting sick on live TV.  Luckily none of that happened :)

Tuesday had me entering the iconic CBC Radio Building in Halifax for an interview with Don Connolly of Information Morning.  This interview being taped, I thought it would be that much easier, I was wrong.  Mr Connolly certainly is a great conversationalist and made the interview a wonderful experience.  However, my brain was certainly in overdrive.  I have described my brain in the past as a large set of filing cabinets, each containing well organized information.  I've also written a blog post explaining that brain surgery is like someone has gone into those filing cabinets and dumped them, mixing up a well organized system.  I continue to reorganize these imaginary files everyday but they are by no means anywhere close to what I once had.  So my interview had me scrambling to find the words I wanted to use, the information I wanted to share, the message I wanted to portray.  I was actually surprised when I heard it Thursday morning, although there is so much more I could have said, it wasn't bad for having a disorganized brain.

Although these two events were just minutes out of each day, they certainly were a stress that I'm not accustomed to.  Sounds kind of funny as one would think the stress of having a brain tumour would compare, but media is kind of a one shot deal.  The brain tumour, well, I've been carrying it around knowingly for a year and half now, so I'm getting used to it's weight on my soul.  Last evening however, my tumour had one of it's toddler temper tantrum fits and decided to throw a very powerful, long lasting hit of trigeminal neuralgia my way.  Trigeminal Neuralgia is painful shocks to the face, eyes, teeth, anywhere those trigeminal nerves run along the face.  As I've said before, although I experience it everyday, the complication from surgery which has my right side of my face almost completely numb,  has been a benefit from the debilitating shocks.  However, I do have places on my face I feel and did I ever get slammed last night.  This shock stayed on, like someone had turned on a light switch and lasted for a good minute.  That may not seem long to someone who has never experienced lightning striking your face, but to those who know this pain, a minute is an eternity.  It actually scared me and I've taken it as a warning that over doing it is never in my best interest.  Today, my face is certainly getting zapped but nothing in comparison to last night.  Today has now become a rest day.

Tomorrow is the big day, Spring Sprint day.  It's a fun family run that is not timed but rather a gathering of brain tumour survivors with their family and friends who can run or walk 2.5km or 5km.  It is also a place for family and friends to gather to remember those they have lost, to honour their memory, to get comfort.  I will be there with my amazing little family and my wonderful friends who together we have formed the Recovery Roadsters.  I am honoured and grateful to have them walking Recovery Road with me, not just the 2.5 km but everyday.  I am so blessed.  Ironically Monday has me sliding in that MRI tube once again for my next brain "check up."  Of course the stress of this is weighing on my mind.  On twitter, those of us in the brain tumour community # "hashtag" it as #scanxiety, a made up word by a lady in the UK, that couldn't be more accurate.  Anyone who has to have regular MRI for whatever ails you, would understand the anxiety that comes with it and the stress of waiting for the results.  Sigh!!!  So what do I have on the go for Tuesday?  A massage, a well needed, well deserved massage.

If you would like to donate to the Recovery Roadsters you can do so by visiting my donation page here.  My family, friends and my misbehaving tumour, thanks you

365 Days of Recovery

It's here, the one year anniversary of Brain Surgery.  This time last year I was in the OR, having my brain tumour "debulked" .  I created a video in honor of my 1 year anniversary and while I'm pretty confidant that it will not win an Oscar, it will remain unpublished for some "tweaking" Not to be confused with "twerking" there will be NO twerking in that video. So, here in no particular order is what I've learned in the past 365 days?

That brain surgery as necessary as it is, Sucks!!
That a brain tumour is simply a mass of cells who get together and plan an "out of control teenage party" in your head.  As much as you think you can clean up the broken pieces, you just can't replace some of the valuables.
That the first few weeks of recovery were nothing like I had expected.
That the next few months of recovery were nothing like I had expected.
That the word " Time" became as much a part of me as my brain tumour itself.
That being Canadian is something to not only be proud of, but to be grateful for.
That LOVE is "in sickness and in health"
That you learn very quickly who the important people are in your life.
That the above statements truth was a powerful enlightenment.
That you can have a headache everyday.
That I will not let my brain tumour define me.
That my brain tumour has now become a big part of who I am and that's OK.
That people have an expectation of when you "should" be better.
That my brain thinks differently now and I find that fascinating and frustrating.
That being home with my kids for the past year is a silver lining in all of this.
That I thank God for each day.
That expressing my thoughts into words is like putting a jig saw puzzle together every day.
That life as I knew it does not exist anymore.
That I'm grateful for all my specialists.
That my life is great, even with teenagers partying in my head.
That perspective is way bigger then what we perceive.
That I took my perfect vision for granted, learning to live with double vision is interesting to say the least.
That Doctors are busy, the health care system is tasked and at the end of the day it's a business like any other business.
That MRI's are hateful and I still don't sleep the night before.
That Canada is NOW working towards counting every Brain Tumour, but it will take time.
That benign brain tumours although depending on location can be just as life threatening as malignant ones.
That my children remain fairly silent and I fear they are angry at me for getting sick.
That this is to big for me to even understand so how could I ever expect my kids too.
That life is too short not to eat Gluten every now and then, even when I suffer the next day.
That blogging makes me feel good, brings out raw emotions and allows me to express this journey.
That I never expected side effects from surgery, even though it was brain surgery.
That I am grateful I am alive, walking and taking however, I'm sick of my other symptoms being down played simply because I'm alive.
That I've learned more about myself in 365 days then in 40 years.
That having a hole in your head is just plain weird.
That I miss my job, my co-workers and the smell of 70% isopropyl alcohol and transpore/mircopore tape.
That science hasn't even come close medically to understanding the brain.
That in a perfect world Neurosurgeons would have brain surgery so they could truly understand that we are not all "text book" cases.  Perhaps there will be an "app" for that someday.
That I'm not afraid some days.
That I am afraid the other days.
That I continue to raise my kids in a a silly, loving, off the cuff manner, hoping they will learn that strength can come from your weakest moments.
That watching your kids minds process the fact that mom couldn't get the fork to her mouth, was just as confusing for us all.
That I have come a long long way in 12 months and no intentions on slowing down.
That radiation scares me but know it's something I should probably consider.
That having two caring and considerate children is a product of good parenting and God's will.
That I sometimes wonder what I would be complaining about right now if I was healthy.
That I'm grateful to Global News for thinking that Canada not having a National Brain Tumour registry is "newsworthy"
That I sit in silence way more then I used to.
That I can't imagine a life without T Jay, I am grateful and thankful for his unconditional love.
That health should not be measured in weight and height but defined in a mental state.
That I'm the luckiest Woman and Mother in the world.
That I'm thankful for the Twitter community of #BrainTumorThursday and #BTSM for their support
That my problems are no different then your problems..
That our society defines you by the work you do, being a brain tumour survivor was not in the "career choices" book at school.  Yet at the moment that is my full time job.

Hi my name is Kelly, I'm a Brain Tumour Survivor and I'm recovering one day at a time.

How Much Did Your Brain Tumour Cost, Mentally?

I could barely keep my eyes open last night as a crawled in to bed.  I don't remember gazing at the clock in the middle of the night, I think I slept straight through!!!  A rare occurrence for me.  When I woke at 7:30 this morning I couldn't believe that I slept in, and as I stretched I ached all over.  There is only one explanation for this, I had a yard sale yesterday.  Now who in their right mind would think a little yard sale would exhaust someone that much?  Not me that's for sure, and I had the help of many hands.  What I am realizing is sometimes the mental aspect of something is far more exhausting then anything physical.  Again the recovery of the brain is a little more complex then I originally thought.

My yard sale was a huge success as I had no prices on anything.  It gave me a great opportunity when asked "How much do you want for this" to reply "it's all simply a donation to the Brain Tumour Foundation of Canada".  Which for many, peaked an interest as to why I choose this charity.  I spent my morning talking about my brain tumour, The Brain Tumour Foundation and all their support and the amount of Canadians diagnosed with a brain tumour every single day.  This lead to listening to other's stories of struggle, defeat and survival, many hugs from strangers and a wonderful feeling that I was helping a charity that few people knew existed.
I'm proud to say that my small yard sale generated $215.15 for the making "cents" of brain tumours campaign that the Foundation is running for the month of October, in honor of Brain Tumour awareness month.   I am thankful for every donation.

One thing that came up in conversation many times yesterday is how lucky we are to live in Canada.  I have no idea how much my surgery would have cost, my many trips to multiple specialists or my upcoming radiation.  What I do know is I count my blessings for all of the above.  One thing that is sadly underfunded however, is how much my brain tumour cost me mentally.  We don't take mental health seriously enough in this Country as our access to resources are limited.  This is why I am grateful for the Brain Tumour Foundation of Canada's resources.  People don't really know much about them because they don't really advertise.  Instead of spending millions of dollars on fancy campaigns like some charities, the money that is raised goes back into research and support.  They rely on those who have been affected to help.  Aren't they lucky that I have a brain tumour?  Not because I'm raising money from my driveway or from the comfort of my couch (my next fundraising idea) but because I love to help.  When I was first diagnosed, I had no one to turn to.  Friends and family were great support but they knew just as much as I did about brain tumours...nothing!!!  I found the foundation on line, not because my Doctor, Neurologist, or Neurosurgeon suggested it.  I found it because I went looking.  There is something seriously wrong with that picture.  There is a huge resource out there to support the 27 Canadians who will get diagnosed today, and no one told me about it.  Not fair!!  We NEED  a national data base in Canada, we need the health care system to work with Foundations like these.  Research as important as it is, is only part of the picture.  Someone needs to reach these 27 Canadians and ask them "are you ok,I know what you are going through"  Wouldn't it be a perfect world if a patient's mental health was valued as much as their physical?

So how much has my brain tumour cost, mentally?  More then I can ever put into words.  What I can do is use my rather "large presence" in this "petite body" (in other words...big mouth) to let people know that there is support, there is help and there is someone who understands what you are going through.  I will do what I can to help out financially through fundraising so that the Foundation can reach one more person.  Even if that's $215.15 at a time.

It's Snowing in August

Do you remember snow globes?  Those magical little water filled scenes with white flakes.  If it was REALLY special it had silver glitter that made it look like it was snowing forever.  I remember one I had as a child, it had trees and children skating on a pond.  I loved shaking it and watching the snow cover the children, falling ever so gently on the evergreens.  If you placed it on a hard surface the flakes would balance on the trees until someone flipped it once again.

Today, I realized that my recovery is very much like a snow globe.  In January, my brain was shaken up like one of those precious globes.  When I think back to those early weeks and months, it's all a haze, a freshly shaken globe.  Slowly the pieces started falling into place.  There are days when I feel like my globe is almost clear and then there are days like today.  When my balance is off, my thoughts aren't clear and an exhaustion that is indescribable.  Shocks to my eye, brain itch and an inability to remember how to spell the simplest of words has me thinking "who shook my globe?"  It doesn't take long to realize that I already know the answer to that question.  Brain tumours don't let you forget

It's Not Just Another Day

Sooooo here we are, 7 months ago today I had brain surgery.  Crazy eh?  Not sure if I'm referring to the brain surgery part of the 7 month time lapse.  Both I suppose because it's surreal no matter which one you are talking about.  How could 7 months pass.  It seems like yesterday I had my brain surgery, yet I know how many obstacles I have yet to overcome.

During my surgery they did brain mapping.  Wouldn't it be cool to see what that looked like.  Think about it, there are people who first, actually saw the inside of my brain and second, mapped out my brain and it's function.   A copy of that to show the grand kids would be pretty neat!!!  Hopefully by then, since my kids are young, they will have less invasive techniques and my brain mapping slide show would be "old school"

All jokes aside the 11th of every month is never an easy day for me.  Some months are better, this isn't one of them.  Brain tumours suck as anyone who has one will surely agree.  Tomorrow however, is a brand new day and like every day I will do my best to "give it my all"

The Joys of Life

Hot summer days are hard on  my head, simply due to this crazy humidity that never leaves in Nova Scotia.  However, last night it was a little cooler and I set out to mow the grass.   All these small things when you are still recovering are HUGH.  This is not my first try at this job and luckily my grass is just a wee bit bigger then a postage stamp.  When I finished I will admit I was tired but the pounding throb in my head was far less noticeable.  Hmmm this is progress as I admire the fresh cut grass.  In my "before brain surgery" life mowing the grass was usually done after working all day, with some whipper snipping, and maybe some weeding to go along with it.  But for now, mowing the grass and living to tell about it is fantastic.

The amount of rest I require between task seems to be lessening.  Doing laundry does not do me in for a day anymore.  I might even get the bathroom cleaned on the same day!!!  I KNOW...I'm blown away too.

 Months ago I couldn't stand being in the grocery store or Wal-mart because of their shinny floors.  Shinny floors and my eyes didn't get along.  I'm happy to report that looking at the floors in box stores no longer make me want to throw up.  This is progress!!!  :)  I still have photophobia, sadly this is not something they can correct with the prisms so I might be stuck with that one.  So my solution...don't look directly at any lights.

When you are in the crazy part of your recovery ( the beginning when everything is happening all at once) you really have no clue where you stand.  It's all too complicated, too busy, too scary.  I finally feel like I have things under control.  I understand what I can and can't do, my limitations both mentally and physically.  I realize that I'm never going to be the same as I was pre-brain surgery.  But maybe that's not who I was meant to be.  Perhaps my calling is to share my brain tumour and brain surgery stories to others in similar situations.  Just as I so desperately searched for this exact thing when I was scared out of my mind.  Maybe the point is for those of you who are healthy to thank God, Karma, Fate..whatever you believe.  Be grateful, be thankful that you are not dealing with health issues.

Life is short, call a friend, kiss someone, adopt a dog, eat chocolate, sing with the windows open.  Start living your life because the joys of life are good for your soul.

Love Is...YOU

July 8th 2012~You txt me out of the blue, explaining who you are, and asked if you could take me out to dinner?  I thought who goes out to dinner? I txted back saying how about coffee/tea or ice cream?  Just in case you were a crazy nut, I would only have to spend half an hour with you. Your return txt, and I quote..."you have to eat don't you?  We can have coffee/tea and ice cream after dinner"  I stare at my phone and wonder who is this guy, I respond back with a "sure why not" thinking he's a bit of a smart aleck.

July 9th to 15th 2012~small get to know you txting revels he is indeed a smart aleck.  This is either going to be a long long dinner or a fun one.

July 16, 2012~you pick me up at my house and open the truck door for me...interesting I think to myself, a man with manners and chivalry. You surprise me with taking me out for Thai food, wow, he is so much more then Boston Pizza!!!  Conversation is ridiculously easy and as I babble on, you look up at me from your meal and smile at just the right time, not only are you listening but you get what I'm saying.  At that moment I thought ohhhh no, I was just looking for coffee. Crap!!!  Late into the evening the date continues, tea and ice cream do follow, you walk me to my door and a polite kiss good night.  I can't stop thinking about you, yet I tell myself that I'm very happy as a single person.

July 17, 2012~Would I like to get together again?  YES, yes I would

August 16th 2012~We have spent every day together, I really like your company and you haven't given me one reason to suspect you are crazy.  Who are you?  The following week you meet my kids, it's like we've all know each other for years.  By the end of August you are aware of my Trigeminal Neuralgia and see how powerful and debilitating it is to me.  This frustrates you as a Paramedic, helpless with no answers.  I see a Neurologist and am awaiting an MRI.  I get a date, Oct 2, 2012, and we wait, you like everyone else reassuring me that it's nothing.

September 16, 2012~you are well aware and completely part of the planning process for my huge Christmas surprise for my kids.  We have fun finding a place together that will be the perfect family vacation.  We book the end of September.

October 2nd 2012~we are underway with the planning of our Halloween party, both thinking we are biggest fan ever!!!  That day we travel to Antigonish, you poke light fun at my intense fear of going in the MRI tube.  Having a hard time understanding my "there's no turning back now" in regards to answers, a feeling I just can't shake.

October 3rd 2012~The call.   You come to my work place to find me in a heap of uncontrollable sobs, you spend the rest of the day with me as I perch myself on my thinking rock in Long Lake Park, not understand how I, at 40 could have a brain tumour.  Who gets brain tumours?  Why?  What do I tell my kids?  You are there to help me with all these questions and together we figure it out, one painful thought process at a time.  It's more clear then ever, you are a gift from God, in the purest form, true Love.
A crazy whirlwind of appointments follow, pre-op, neurosurgery, family doctor and neurologist.  You are there by my side to ask all the questions that I am too overwhelmed and stunned to ask.

November 9th 2012~We are up early, it's brain surgery day!!!  I can't believe I'm having brain surgery, it just doesn't seem real.  I'm scared, you reassure me, it's all going to be ok.  My friend Heather is there with us.  As I work at this same hospital my surgery is at, many of my co-workers parade through wishing me well.  Tick Tick Tick goes the clock, we are delayed by an emergency.  Very understandable.  I finally fall asleep to be woken up by my neurosurgeon, another emergency.  I've been cancelled.  What? What do we do now?  We go home and in shock I weep.

November 12th~I call in sick for work, I'm not functioning, I can't sleep, I can't eat, I can't stop crying.  You are there with me, to help sooth every tear.  Memories of childhood come flooding back, things I never even realized were there.  Memories of being "let down by the system" when I was 25 and pregnant, finding out my 16 week old fetus had died but because it was December 23rd I had to wait until December 27th for a D&C to remove the baby.  I am beyond angry and stunned suddenly at our medical system. Why does everything horrific happen to me at this time of year?   I have cracked, but I don't know it yet.  Still not functioning, you help with Christmas.  This was supposed to be the best Christmas ever.  You are amazing.

First week of December I go to see a councilor.  I am raw with open wounds that I thought I had healed long ago.  You stick by me,  holding me, helping me, loving me and understanding me.  It's going to be alright.  I work through the feeling of abandonment and I come out the other side.  I ask my doctor to return to work, I'm going to be ok.

First week of Jan~I'm back to work, feeling better mentally then I had felt in a long time.  Your support has been more then anyone would ever expect.  I so love you.  I'm told that my surgery could be January 11th 2013.  Mmmhmm we'll see when the day comes I think.  I kind of prepare mentally but I'm not holding my breath.  If it's not that day, I'm ok with it.

Jan 10th~we get the call, yup tomorrow is my day.  You pretend to be ok, so do I

Jane 11th~We are up early, it's brain surgery day...again!!!  Same room, same sweet lovely nurse.  Guess what...a delay.  Been here, done that, and we wait.  I'm not scared this time and I'm truly at peace with whatever happens.  Lets face it, it's brain surgery around my brain stem, we are not baking a cake from a box here!!!  This is big time serious crap.  We are told no bed for me, mmhmmm yup...I guess I'll be working Monday is what I think.  10:00 it's time, lets go we have a bed, it's show time.  OH MY...I'm having brain surgery.  We embrace and I know when you tell me everything is going to be ok, it is!!! I can feel your fear, we kiss and I'm off.  Suddenly terrified, brain surgery, who has brain surgery!!!   That's crazy.
Throughout the day you keep a journal of what the nurses said, who came to see how I was doing, and how you were feeling.  You and Heather pass the long 10 hours somehow.  I slept through it (I know bad joke) I awake to see you and Heather and I am sooo grateful that I woke up.  I am so happy to see you, I know who you are, I can move my arms and legs, my head hurts.

Jan 11-16 I'm in ICU Step Down, you are there to feed me, walk me to the bathroom, even to bathe me.  You are love in it's purest form.  I know this at the time but can't express it.  Everything is very confusing and I just don't feel like myself.  I'm tired but you push me, I hate that.  Nothing seems normal, you are there to help me through it.

Jan 17~you bring me home, I can barely stand, I can't see right and I still can't figure out how to get the food to my mouth.  You are there by my side, never leaving, always helping, always loving, forever patient.  I'm so glad to be home yet don't understand how in this state I could be.

Feb 16~Recovery is cruising along I can do this.  WOW look at me go.  I just can't see right and I keep falling over, well this is starting to suck!!!

March 16~Recovery continues, you get me a tablet for my birthday so I can make everything REALLY big on it.  The Internet is now mine...muuhwaaahhhaha (evil laugh)

April 16~ We are experts at Doctor appointments.  I have so many Doctors and you take me to every appointment.  Asking all the right questions as I stumble my way through this.

May 16~I'm done, I  don't want to play this game anymore.  I'm tired of the stall, hurry up last leg of this recovery.  I just want to get back to work.  I miss my job, my co-workers, my friends.  I miss my Independence.  I become angry, this is NOT how I saw this happening.  Find out my eye improved a little,  Hooray!!  Find out I have 25 radiation treatments in my future, Horrr...no..no there's no hooray, there is just an overwhelming feeling of this is not done yet.  You are amazing, again the right questions at the right time to the right people.  You do your best to joke through this new information to try and lighten the mood.  I'm having none of it, I'm angry and it shows.  You are amazingly patient with me, I don't know how you do it.  There is not a day that passes that I don't thank God for you, you need to know that.

June 16~onward and upward, we trudge on, I'm getting some energy back, I over do it, you tell me this, as does my physio.  I hate it when you are right.  With grace you never tell me "I told you so".  How are you so patient with me?  You always say you are the luckiest man in the world.  I say I'm the luckiest women in the world and know that God forbid,  if the tables were ever turned I would do all the same for you.  YOU are my soul mate.  We truly know what the other needs or wants.  I am blessed to have you in my life.

July 16th~One year from the day you took me out for Thai food.  Never in a million years did I ever think I could love someone as much as I love you.  T Jay, only you will understand my "mush puddle" love for you. You are LOVE.

Put Your Hands Together...

When an illness finds you and it's stubborn enough to hang around, you can't help but feel a bit helpless.  Since I use to hear quit frequently "I don't know how you do it"  (referring to working full time, raising two kids, one with health issues, kids events, blah blah blah all the things that every other Mother does for her kids)  I never felt I was doing anything extra special.  I was doing my job as a Mom and wanting to do it right.

Now I hear the same thing.."I don't know how you do it"  However, this time it's all of the above and a brain tumour too.  And I can tell you how I do it, it's with help.  I've had/have so much help that I think it's certainly worth mentioning because you just can't do this with out it. I'm blessed to have received this help in so many different ways, each one unique, each one I'm grateful for.  So if you could put your hands together and applaud the following for their contribution in the "lets help Kelly down recovery road campaign"   In no particular order...I love and appreciate the following...and they know why:

T Jay               Mom          Simon         The Brain Tumour Foundation of Canada
Dawn 1           Zackary      Jim              My co-workers
Laura              Kyra           John            Heather 1
Jen                  Shipra         Haley          Heather 2
Peggy              James         Wendy        Lindsay
Sue                 Glenda        Helen          Sheila
Ann                 Ona            Aunt Agnes Madi
Sussie             Todd           Joe              Andy
Ally                 Sophia        Angie          Thousands of prayers from people I've never met
Shirley             Christine     Lesley         Thousands of prayers from people I know
Christy            Ron             Brian           Countless get well cards and FB wishes
Steve              Amy            Tracey        Karen
Tanya             Peter            Zoe            Shawn 1
Jorden            Steven         Dawn 2       Alison
Sonja             Shawn 2       Caren         Connie
Ivy                 Linda            Ellen           Shawn 3
Greg              Jared            Spike          Brandon
Brandon         Mary            Meghan      Dr Lecky   
Dr McLean    Dr Lwu        Dr. Mulroy  Dr Tan
EASE            The Balance Clinic           7.3 Step Down

And finally to the two Nurse who never said BOO when I INSISTED they take me back to recovery to get the proper adapter for my Art-line.   (OH MY GAWD, can you imagine)  How I can remember this clear as a bell but can't remember names, I will never know!!!!

So, in the end I don't have to say what everyone did or how they helped, but helped they did.  I am and will forever be, grateful for each and everyone of them.

If by some chance I have forgotten someone, I am simply going to pull the brain tumour card and say, "Seriously, I have a brain tumour, how do you ever expect me to remember all of that"  LOL
Thanks for being super awesome in my life everyone.  And a special thanks to T Jay and my kids for letting me pull the brain tumour card almost everyday to which they only "groan" 50% of the time.  :)

The Shocking Truth

Nothing more exciting then getting jolted in the face.  Yes the shocks are back, my old friend Trigeminal Neuralgia.  I didn't like this friend, in fact I had to do drugs to ditch him.  I was told that there was a possibility that he might return as I weened myself off of these drugs and sure enough here he is.  Off to my family Doctor to see about increasing the meds back up.  I already have "permission" from my Neurologist to do this but I don't think it's a good idea to just start taking more drugs without anyone knowing about it.

One of the most common questions I get asked as I wonder down recovery road is "what do you do all day?"  It makes my skin crawl and a deep rooted scream is silenced as I calmly tell them the following:
~I'm recovering from brain surgery, therefore everything I do takes twice as long.  Laundry is day long event.  Grocery shopping (with help) is exhausting.  Getting my mail is an outing.  Vacuuming my floor in my tiny house makes my head hurt.  Then, there are weekly appointments with this specialist and that specialist.  And on top of all of that, paperwork, paperwork and more paperwork.  Everyone needs a form, questionnaire or in some cases a small book filled out.  I understand the need for insurance companies to have all this documentation, it's important but when you don't drive it's not the easiest to get to my Doctors to have this all taken care of.  So to answer the question of what could I possible do all day,  you must be bored out of your mind the answer is NO.  I hope you never have to recover from brain surgery or live with a brain tumour because it's a living hell, it's exhausting and it's by far the most effort I have ever put into something in my life.

~That's what I do all day...oh and get shocked in the face with the most excruciating pain know to man.

Picking Up The Puzzle Pieces

My life has been a bit nuts as of late, well the entire last year, but more so in the last week.  It all started Saturday when I was in Kent wondering around the garden centre.  One of the more maddening things that has happened to me since surgery is, I can't remember the names of plants or shrubs in my garden anymore.  If you know me at all, you will understand how horrific this is to me.  If you don't know me, I will tell you, I love to garden and had become quit good at knowing the names of my dirt dwelling friends.

So as I wondered around the garden centre staring blankly at most shrubs, but remembering a few I started feeling off.  I can't tell you exactly how I felt, I just knew it wasn't right.  As we walked down the aisle it became all to familiar, this was a migraine, but not just any migraine.  This kind of migraine brought me to my knees in fear at work last summer, it caused me to have to pull over while driving as I could no longer see properly in November  This migraine affects only my right eye (the one with the damaged nerve that requires the prism)  It is like someone has taken a piece of the puzzle out of my visual field, it is way more then just an aura, it is loss of sight.
I took the keys from T Jay and my son's hand and headed for the car.  Once inside I closed my eyes, if I don't have to look, then I don't have to "not" see.  T Jay was right out and we headed for home, becoming very nauseous during the drive.  I spent the rest of the day in bed.

Monday, was spent at the eye clinic where I was told that my eye was getting better and was able to down grade to a lesser prism.  Very exciting news.  I did tell the Opthamologist about the "puzzle piece migraine", I got a "hmm, we'll keep an eye on it" Not really sure what that means coming from an "eye" doctor.

Tuesday had us seeing Dr Mulroy at the Cancer Centre for the first time.  I didn't like entering that section of the hospital.  Even though I know I don't have cancer, and I am so grateful for that, it's just not a place I ever thought I would be.  I instantly, however, liked him.  Lovely and kind is the energy he gives off, which tells me he is in the right profession.   A profession I am sure, must be extremely difficult at times. The information he had for us however, was not quit what I expected (see...lesson number one in having a brain tumour, expect nothing.  I still haven't mastered this life lesson)  I was expecting to hear what my Neurosurgeon said which was the following:  I'm no longer a candidate for surgery therefore, we should look at radiation.  It would most likely be one dose, which doesn't shrink your tumour, but stops it from growing.    Instead I heard my new Doctor say the following:  "You are no longer a candidate for surgery therefore, we should look at your option for radiation which we would do once a day for five weeks".  WHAT?   What did he just say as my tiny hand and brain work together to do the math on my fingers like a 7 year old.  5 10 15 20 25?  25 treatments?  What happened to the 1?  As he continues to talk about the fitting of the face mask, another MRI and CT scan and the timing of all of this to be in about six month.  I am still wondering where the "1" went that my Neurosurgeon talked about.  He then told us about the risks that are involved which include getting a brain tumour.   My dry scene of humor can't help itself and blurts out, "well since I already have one of those what would you do if I was your mother or if you were me", his response, "prepare for radiation is 6 months".   "You  have a tumour that figured out how to grow to a significant size already, we don't have the answers on how long that took or if it will continue"  He also spoke about the fact that radiation does indeed slow the growth of tumour cells and CAN shrink a tumour size.  I hear this and it registers in my head but I'm still so caught up on the 25 that I can't get it together to ask why one Doctor said it doesn't shrink a tumour and he, another Doctor is saying that it does.  All I do is continue to listen to him answer all of T Jay's questions.  These are all questions that I have in my head but I'm now back to information overload and I just shut down to protect my sanity.  This is the most amazing thing about T Jay and I, we work like we are one, our souls are connected at a level that is indescribable.  He picks up on non verbal clues and takes over right where my brain has left off, or in most of these cases shuts down.

 Today is now Thursday and I still don't feel right.  As excited as I am to be down to 400mg of Gabapentin, my face is starting to act up.  Each day getting worse, the crazy thing is I can't feel the right side of my face, yet I can tell you right now where each one of the three branches of the trigeminal nerve are.  There is an intense pressure building and a zipping going through my teeth that I am on high alert that the debilitating shock of trigeminal neuralgia is only moments away.  Yesterday I went back into living in fear.

So since lesson number one is "to expect nothing" lesson number two is once again "be grateful."  I am lucky to be in a position that my tumour is not cancer.  This allows another 6 months of healing to happen before radiation is to begin.  If it was cancer, I am sure I would be well underway.  I'm grateful to be under the care of another new Doctor, one who is also understanding and kind.  I am however, the most grateful for T Jay.  He is my go to, my shoulder to cry on, my person who takes the brunt of my questions that don't have any answers. He listens, he helps, he understands but most of all he is right there with me on a journey that seems so endless.  He is there to try and help me put the scattered pieces together from a puzzle box without a picture.

Smarty Pants

I'm currently down to only 400mg of Gaba now.  Exciting, as of course the hope is to come off this medication completely.  This has caused two things to happen.  First, I no longer feel like a walking druggy.  I've spent the last year fairly medicated and felt I was walking around in a medicated fog.  Second, I'm started to feel things a bit more, sadly the "things" are pains.  The crainiectomy or permanent hole in my head hurts, as does part of the incision.  Now this could also be something else,  nerve regeneration. That whole side of my head has been numb since surgery, yet I feel pain.  So I'm not really sure if it's because I'm coming of the meds or my nerves are healing.  I many never know.  I do know that "brain itch" is still part of my life almost daily and could truly cause a sane person to loose their marbles.  Imagine 1000's of ants crawling under your scalp, all over your head and face, that's brain itch.  The only thing that seems to sooth it is heat.  I've become very friendly with my magic bag.

I'm preparing for an upcoming busy week.  Back to the eye clinic, who will hopefully lessen my prism strength.  Even though you have an appointment there, you need to prepare for the entire afternoon.  It's an odd place because everyone waiting there has vision issues.  So not to many people are reading obviously, and everyone is doing the same thing....people watching.  Lots of fun but can make for some awkward moments.

I also have a massage appointment to try and fix this neck pain I'm still experiencing from having my head tilted for so long.  I'm trying a different type of massage, as all the others haven't seemed to helped.

Then we are off to Dr Mulroy a Radiation Oncologist to discuss possible radiation treatment.  My Neurosurgeon recommends it but I want to hear what he has to say.  Apparently since I'm so young (41) and I still have a brain tumour, radiation might help to "delay" it's growth.  We were told that radiation doesn't shrink a tumour but rather stop it from growing.  Huh, who knew?  I guess we will find out more on Tuesday.

All of these appointment and new information given, wipes me out.  At the beginning of my recovery I couldn't sleep.  It was like I was afraid to sleep or just didn't want to miss anything in my recovery.  Now it's all I do.  I'm exhausted all the time.  I do, however, acknowledge that I am starting to do a bit more.  Laundry, sweeping, washing floors, even trying to weed my sad flower beds.  These activities prior to brain surgery would have all been done in one day after working 8 hours.  Now, one activity equals one nap.  I've stopped fighting it and surrender to my body's need.

I've come to realize that the brain is so much more then the main computer of the body, it is the body.  I always thought I had some control but the truth is I only have influence.  If the body wants to grow a tumour, it will, if it wants to get arthritis, it will, if it wants to get into perfect shape, it will.  The only thing we can control are the influences, smoking, drinking, going to the gym etc.  And even with all these influences both good and bad, the brain will end up doing what it wants in the end anyway.  I asked T Jay one day, "if the brain is so smart then why didn't it tell me I had a brain tumour" and he simply said "it did"  Hmmm, I pondered that for a few days, and thought yup he's right it sure did, I just wasn't listening.  So now I call him "Smarty Pants" you can decide if I'm referring to my brain or T Jay :)

Playing Catch-up with Ketchup

Have you ever noticed that we are sometimes too quick to point out the negatives, find the faults or not willing to admit when we are wrong?   As we age and mature we should get better at embracing the positives, but unless you have mastered Buddhism, chances are good you still falter every now and then.  I like to call this faltering a funk, and I'm in one right now.  The great news is, I know I'm here, I recognize it, and I'm embracing it.

All this self embracing has a lot to do with my brain playing catch-up or as I call it now, ketchup brain. You know when you take a Heinz glass ketchup bottle and no matter how hard you smack the bottom, it will not come out.  Well, I feel like my head needs a few good smacks to try and get the words to flow.  I can't remember names, certain words or even what I was trying to say. I could name all the plants in my gardens, now I just stare at them, hoping they will scream at me "I'm an astilbe, a pink one, I was here last year, don't you remember!!!!"   I've searched other sites on brain tumours and brain surgery and it seems to be a common complaint.  Another thing that is also common are people who don't have a brain tumour or who haven't had brain surgery tend to say oh it's just because of your age, it happens to me too.  Which is extremely frustrating to all of us who are living in this brain tumour hell because it's more then age "this" has not just happened to you. I did not have ketchup brain before any of this, it's embarrassing and I really wish I knew a way to speed it up.  Hence part of my "funk", figuring out just how much my life has changed since Bubblegum and Honeycomb took up residency.

So putting ketchup brain aside, I knew I was falling into this funk by rereading my last post on Mother's day, "The Unbreakable Bond of Motherhood"  I wrote something that is only partly true and it very unfair.  Yes all my biological family lives in Quebec and Ontario, yes I was raising my kids pretty much on my own and yes I do have a Foster Family here in NS who I don't see much off.  However, they have helped me in many ways.  First off,  they instilled the values in me that I teach my kids today.  Growing up as a child/teen in a house of abuse, I wouldn't be the person I am today if it wasn't for being saved at the age of 15 by my Foster Family.  My Foster Dad John, is the first man who I ever learned to trust, who showed me kindness, who walked me down the isle, who saved my ass when my mortgage fell through on the 11th hour.  He came into the hospital to see Haley and I when everyone else was scared to be around us because of the H1N1.  He brought Zack Popsicles when he had his tonsils out and he is the reason I got to spend my 40th birthday in Havana.  I can hardly call this "no help what so ever."  So as I said above about maturing and willing to admit when you are wrong, well this is one of them  I just had to knock some of the ketchup out of my brain to realize it.

Spring Sprint...or Crawl

Four months ago today we tried to give Bubblegum and Honeycomb their eviction notice, unsuccessfully I might add, so from this day on I will call these days (the 11th of the month) my post op birthdays. I get to celebrate my post op birthday is an amazing way, I'm going to attempt the Spring Sprint for the Brain Tumour Foundation of Canada.  It's a 2.5 or a 5km walk to raise awareness and much needed funds for Brain Tumour research.  I am very excited to do this but very nervous.  My balance and co-ordination is much worse around moving objects (other people in this case) AND that's a long walk.  Certainly is strange thinking 2.5km is a long way since before surgery I walked 5km almost nightly.  However, under the circumstances I won't beat myself up over it and will be back to long walks in due time....(there's that word again....TIME)
So, with T Jay, my amazing kids, my best friend, and one of my sweetest co-workers by my side we will set out this morning and see what we can do.  Thanks to all who supported us, Bubblegum and Honeycomb (my brain tenants) thank you!!!  :)

Merry Christmas

Last March I had the amazing experience of bringing in my 40th birthday on a roof top in Havana Cuba.  I fell in love with the culture, the people and the history. This was my first vacation ever and now I understand why people do it year after year!!!  I jammed everything I could possibly experience in 7 days thinking I would never get the chance to go back being a single mom and all. (at the time)  All I could think about when I was there was this would be so cool for my kids to see and what an awesome reality check it would be.  They certainly are not spoiled by any means but we do live in Canada after all...we are all spoiled here in comparison.

Returning home I suddenly realized that I could take my kids, it would just take some saving and planning.  I spoke with my family Dr about taking them as my daughter has an immune deficiency, he had no problem with it, made some suggestions and then I went into major planning mode.

 I went to my bank and opened a savings account with the sad amount of $50.00 knowing that I only had three car payments left.  My plan was to take the car payment money that I was use to paying and dump it into my savings account.  I knew I needed 9 months of car payments to get the three of us to Cuba.  I made cut backs in other areas, got rid of cable TV, watched what we bought at the grocery store, little things added up.  Three problems presented themselves, there was no way I could afford Christmas and Cuba and 9 months took us to April 2013.  That's when Cuba for Christmas was born, what an amazing gift of culture that would be.  My plan was to give my kids new suitcases with sunny south things, like bathing suits, sunglasses and a note saying we were going to Cuba.  I started collecting these items in the summer, with the closing out of Zellers, it was a God send on my budget.

I was busting at the seams with excitement when I booked the trip September 27th turning into an organizational freak, this was going to be such an amazing adventure for the four of us. I was feeling awesome about my life, I met the man of my dreams, together creating a Christmas my kids would never forget.   Six days later I was diagnosed with my brain tumour and the wind blew out of my sails.  Suddenly, my life was about MRI's and surgery dates not the sunny south.  Why?  Why do bad things always happen to good people?  For the first time in my life my mental health was in question as I slipped into a depression.  I went from the person who can do anything to the person who just couldn't.

Surgery booked, surgery cancelled, surgery maybe next week, maybe the week after, all the while I'm sinking both mentally and physically and I know it.  My mind is spinning, do I go ahead and give them the trip, all I can think about is the "what ifs"  I seek help, and with to many light bulb moments to count, I'm back mentally.  Although I'm feeling the physical affects I push on realizing that if this trip is meant to happen, God will allow it and that's where I place my trust.

December 25 arrives, still no surgery and Cuba for Christmas is given.  My kids are as excited as a 12 and 10 year old can be having to wait 4 months to get their present.  We read the reviews, look at the pictures and get as excited as we can.  As soon as the Christmas break was over the phone rings, my surgery was booked for January 11th.  Hooray I think, plenty of time to get this done and be my old self again...wooo hoooo!!!

Well brain surgery ain't all it's cracked up to be, I can tell you that!!!! It's been a long recovery and 13 weeks later, I'm just started to feel myself again.  As Cuba for Christmas is fast approaching I am blown away that not only was I able to organize it in all this chaos but timing IS everything. Although this trip might not be as adventurous as it would have been as a non brain tumour survivor it will be everything it is meant to be, time spent with family.  I'm so blessed to be given this opportunity to have this experience with three people I love so dearly.  One week with no Doctors, no physio, no appointments at all and NO thinking about the "what if's"  It's a tumour free week that we all deserve.  Merry Christmas to my family

Can she do it? Yes She Can..

The things you find out when you have brain surgery, a balance and dizziness centre, right here in Dartmouth, NS.  I had no clue until my Occupational Therapist and family Dr recommended that I go see them.  Ok, I thought, I'm willing to try anything.  I didn't really know what to expect, and like everything so far I thought that maybe this was for other people, I don't really have this problem.  It became apparent that I was in the right place when I started filling out the paper work.  Every question on their questionnaire was surprisingly aimed at my symptoms.

In I go and my physiotherapist starts her assessments, yup I have some balance issues.  The great news is that exercises can be started at home to push my eyesight and retrain the brain. Concentrating on keeping my head and neck straight is a must and now that I have my new glasses with the prisms, (that we picked up today) this should become easier with practice.  The cool thing I noticed this afternoon with my new glasses is I can lean back and look up and not see double anymore.  This is a seriously cool realization, it means I can now lay back in bed and read. I can lay on the couch and watch a movie, instead of having to sit up straight.  These babies are hopefully my ticket to driving again in the coming months. I'm loving my new glasses, even loving the headache they are giving me right now cause I'm thinking, "that's right brain, fix yourself, you can do it"

And with all of this excitement today I'm now exhausted at 730 and that's with an afternoon nap.  So I just might crawl into bed early and watch a movie, just me and my spectacles, ahhh the thought makes me giddy.

It's Tumour weight right?

I'm not sure about you, but I have two children and for years after my children where born I blamed the extra 10 to 15 pounds on my pregnancies.  I'm all of 5 foot nothing so 5 pounds looks double on a small frame like mine. When my youngest reached 8 I thought hmmm maybe, JUST maybe it's no longer pregnancy weight.  So, I joined the gym a year later and couldn't believe how quickly the body can change when you treat it right.  It wasn't the weight loss, although that did happen, it was the change in shape that impressed me more.  The more I worked the better I felt, for a while.  During my year at the gym my dizzy spells became worse and the rise in blood pressure caused a very unpleasant feeling in my head.  We blamed it on my low blood pressure and carried on.  It got to the point approaching spring when the gym and I just weren't getting along anymore and I went less and less.  Weeks later I was diagnosed with my brain tumour.

I've been inactive since June of last year and it shows.  It's the best excuse in the world and I can't even use it!!!  No one would ever say to you "Wow, you've put on a lot of weight"  at least not to your face. You see this would be the perfect time for me to use the "tumour weight" excuse..."ya, I know I did, but I was diagnosed with a brain tumour and I'm recovering from brain surgery"  That opens the door to "oh I'm so sorry to hear that" which in turn I feel I must be polite and say "thanks but it's ok".   So why do we do that?  Why as humans do we say things are ok when they are not?   It's not ok that I had brain surgery, it's not ok that I still have a brain tumour, it's not ok that vision and perspective problems keep me from getting out for walks.  It's the same reason we say "good thanks" when someone asks how are we doing, even when you are suffering from the worse flu ever!!!  Social awkwardness.  We all do it and it's ok that we do.  It's not in our nature to purposely hurt someone's feelings.  We're not normally taught as children how to deal with situations that surround tragic or sudden.  We learn this from our parents, and this parent would love to take a stand and teach my children how to deal with social awkwardness.  I'm living it, I should be the perfect educator right?  I might be, except my " tumour weight" is not solely measured in pounds.

The Eye of the Storm

The Eye Clinic was the appointment of the day,  proceed to the "green" waiting area for your 1:30 appointment.  We were taken right in which led us to finding out that  prisms were the answer or at least an aide in helping with the double vision.  Since I don't normally wear glasses, they could only fit the sunglasses in my purse with the prism lens.   I was told to go and get a pair of glasses (without any prescription) and bring them back and she would fit the lens to those. I guess I'm going shopping!!!  It is actually amazing how the prism works, allowing my vision to realign so I no longer see double.  The key is to figure out how to keep my head straight again, it's been 9 weeks with this styl'n head tilt.  What we were told today is that the damage to the nerve during surgery could take up to 6 months to heal.  She has seen it take as long as 1 year but "usually" where you end up at the 6 month mark is what you are going to have.  Ugh!!!

Next to see the opthamologist..off to the RED waiting area..and waiting area it is...with eyes dilated, we wait, and wait and wait.   One person left in anger due to the long wait, people come in, people leave, I wait.  The "red" waiting room is starting to make me red with anger.  This is the longest I've been out for any medical appointment since my surgery and I'm exhausted.  We continue to wait, another person leaves in anger.  Finally with only three people, me being one of them, in the waiting room...it's now 4:30 I ask, "have I been forgotten"..."oh no it's just a busy clinic day, we are double booked all week because it's a short week"  I loose it, I go all brain tumour on them..."Not my problem" I say..."this is unacceptable, I've just had brain surgery"  The response was, your next...um there is only one person in the waiting room and he's waiting for his wife so ahhhh yeah no kidding I'm next. I was then told how lucky I was to have both appointments on the same day....believe me I think to myself there is nothing "lucky" about any of this.  I then get apologies that they didn't know I just had brain surgery blah blah blah, that's when I really go all brain tumour on them..."it's right there in my chart, she was reading the report at 1:30 while testing my eyes."  It's at that moment when I realize that the "green" section doesn't communicate with the "red" section.  Out comes the Dr and I hold nothing back, I am a very unhappy health care user at this point.  He is very calm, very apologetic and has definite empathy for my situation.  He completes all his tests and basically says the same thing as the 1:30 appointment.  However, we will see you in a couple of months to retest your eyes, to see if they can change the prisms.

Grrr I am mad, mad with a capital M, I'm hungry, I'm tired and I am for sure cranky!!!!  We leave at 5pm 3.5 hours after we started.  If maybe they prepared you for an afternoon wait.  I would have at least brought food, like the other couple did, they have obviously done this gig before.  So I continue on my rant creating a storm on anger inside of me.  As we leave and go through the cafeteria, there walking towards me is a blind man with his seeing eye dog.  I stare at him, as we walk past him he asks for someone to help him, and I immediately turn around asking him what he needed.  A lady working the cafeteria comes to his aid.  This is when I turn to TJay and say, if that is not a sign from God telling me to shut up and be grateful I don't know what is!!!
The man with his seeing eye dog is my "eye of the storm" the moment when everything goes still and calm, and he doesn't even know it.. So thank you kind soul for making me realize once again that all of this as crappy as it is, can always be worse.  That I can weather this storm, with both good days and bad.