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.

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.

One Canadian's Brain

I haven't written in a bit as honestly, I haven't been feeling the best.  The definition of recovery is a return to "normal" state.  Hmm I don't really remember what that "normal" was but I can tell you I feel like I'm slipping backward and not returning to anything.  What has returned is daily headaches and  sharp pains in the head. Nausea (which is new and NO I am NOT pregnant) and some odd "occurrences" has me thinking a trip to the good old Doc tomorrow is in order.  So in the month that I should be speaking the loudest about brain tumour awareness, I find myself not in my best state.  I do feel that since I started pouring out my feelings, anger and love for all that is involved in recovering and living with this brain intruder, I have raised some awareness.

One thing that I did get accomplished in the past 10 days is I posted a letter to government through the Brain Tumour Foundation of Canada's website.  It's called Let's tell Government and is aimed at letting our elected officials in Canada know that Brain Tumour research is critical.  The Brain Tumour Foundation would like to have 837 letters sent to Government which represents the 837 people who will be diagnosed this month with a brain tumour.  So far we have 71.  This form is simple, it's easy and YOU don't have to be a brain tumour survivor, YOU just have to want to inspire change.  Maybe someone close to you has a brain tumour HINT HINT!!!!!  So for example:  Primary brain tumours (That's me)  in Canada are not accounted for.  Yes that's right my brain tumour was not counted.  In fact Canada uses data from the US to calculate or approximate the amount of people we have here with Brain Tumous.  Umm, I'm not a scientist, I'm not a Doctor, nor am I a researcher but I am a brain tumour survivor and here is what I had to say to government:

October 3 2012, the day I was told I had a brain tumour, the day my journey with the Health Care System truly began. I am grateful for all the care I have received so far and as I prepare for radiation treatment I continue to be grateful. I have had a long recovery and lots of time to read about Brain Tumours and their impact on so many lives. I am a born and raised Canadian, living with a primary brain tumour that was only partially operable and not at all accounted for. I'm asking you, our elected officials, why my brain tumour doesn't count? More research is needed to aid in the development of The Canadian Brain Tumour Registry. We have no accurate Canadian data, this needs to be changed. I'm asking you today to hear my voice, because my brain tumour counts.

I have received a couple of responses back but only one that was personalized, it was from Gerry Rogers, The House of Assembly in good old Newfoundland.  Thank you Gerry for taking the time to read and respond to my plea for change.  You too can write to Gerry and all the other elected officials about Brain Tumour research, the need for a Canadian Brain Tumour Registry, access to treatment options or to simply say you know someone with a brain tumour.   Chances are I'm not the only person you know who has been affected by one.  One voice to the government is like a whisper, many voices produce change, please click here  and fill out this simple form  It only takes 5 minutes and you will be helping approximately  55,001 Canadians living with a brain tumour raise much needed awareness.  By the way I'm the 1, The Fifty Five Thousand and ONE Canadian, because my brain tumour counts

Merry Go Round

Do you remember them?  Merry go rounds.  The old school kind, a flat round disc with 6 shinny bars, everyone would run as fast as they could, jump on and spin at high speed.  I can remember being dragged, falling off, missing as I was jumping on...ahhhh good times!!   It's crazy to think how dangerous they were, I guess that's why you don't see them around anymore (although I don't frequent play grounds now that my kids are older...so I may be mistaken) My point is, spinning around at high speeds, facing danger was exciting.  Now at 41, I'm back on the Merry go round, still spinning, still facing danger however, the excitement part has changed, the shinny bars have lost their appeal.  I want to jump off, walk away from this madness, move on and never look back, but my brain tumour won't let me.  One would think I had control over that, but I don't.  The only thing I can do is hang on tight and with each rotation try and smile though it.  I'm grateful and thankful for the wonderful care I receive however, I'm most grateful for the handful of people who have stuck by me through this.  Those who pray, those who call, I'm glad you are on my Merry Go Round

Want to Smile?

Everyday is different like I have written MANY times before.  With very little sleep last night, I plan out my day, which started with a quick flip through Facebook.  Of course anyone who has a Facebook account knows that there are always the "eye rollers" and you wonder why on earth do you have that person as a friend if they drive you that crazy!!!  However,  you then come across a friend's post that brings you to tears.  The good tears, the ones that make you have a renewed faith in humanity.  This has nothing to do with brain tumours and everything to do with my heart.  It affected me so deeply that I want to share this short video with you, it deserves all the hits it gets.  :)  Enjoy....oh a get a Kleenex

Click Here
http://www.cbsnews.com/video/watch/?id=50141588n

Head to Toe Happy

What does a girl like more then chocolate?   Being pampered,  Ahhh yes, to sit and have your nails go from bland and sparkly.  Your feet go from embarrassing to sandal happy and your make up from non existent to glam.  What more could a girl ask for?  Well, how about taking the 2 inches of graying roots and restore then to my natural colour with a lovely a hint of foils.  It all sounds too good to be true but in fact this is how I spent my Friday afternoon, with the girls from Urban Hair in Sackville.  It was a fun after noon with lots of laughs and a feeling of truly being taken care of.

Then of course, one must head of out with the love of your life to an amazing dinner at Onyx.   I enjoyed everything about this chic little restaurant located on Spring Garden Rd in Halifax.  The service was top notch, the food was excellent and the company was way better then any chocolate.

The entire day was a gift, Thank You Urban Hair for making me feel like a princess.  And Thank You to our friends James and Nancy and Jim and Helen for the gift certificates to one of the best little restaurants Halifax has to offer.  What an amazing day.

My Good Karma Gift

OK it's time to share my news.  It's not a car, it's not the lotto, it's a makeover.  I KNOW!!!  Seriously exciting for a girl who has had a little bit of a rough year!!! Urban Hair located in Lower Sackville was giving away a full makeover on their Facebook page, I entered and I won.  YIPEE I am beyond excited.  I know two of my friends who get their hair done there and have been over the moon happy with the end result.  Soooooo I get pampered for 5 hours, that's right FIVE hours, next week.  OH MY GOODNESS!!!!  I get a mani and pedi, my hair done AND makeup.  I would use the term I have died and gone to heaven but that's totally not cool when you have a brain tumour.  So, I will say that it's a gift I received for good Karma.  I always do my best to try and give back to my community whether it's raising awareness for a good cause or raising funds for one charity or another.  I think it's important to share what you can and for me that has always been my time.  If anyone has learned the true meaning of time this year it's me.  This will be 5 hours not spent in a waiting room, hospital or with a Doctor.  It's 5 hours of fun.  I can't wait to meet the staff at Urban Hair and spend the afternoon with them.  I'm a lucky girl in so many ways.

Gifts From Good Karma

I have been beyond excited to find all kinds of support on Twitter.  There is a whole world of Brain Tumour survivors, some who had tumours, and those of us still with them.  Some are fighting the battle of their life with Brain Cancer and others fighting the battle of their life with benign ones.  My point is, Brain Tumours are a fight no matter what you have going on in your head and supporting each other is a must.  I had no idea just how much I needed to hear from others or read other's journeys, struggles and triumphs until I went into the cyber world.

I started this blog more as a journal really.  A place to put my feelings both good and bad.  There are days when I love what I write and days when I think "man I was having a bad day."  Either way, I've put my feelings out there for all to read.  And if only one person reads something and is in a better place because of something I wrote then I feel like I've made a difference.  That's good Karma.  Something you should never looks for, ask for or expect but good Karma will always find you.  I received a gift of good Karma today in fact, and I will write all about it in the coming weeks.

Second Chances

Yesterday I wrote a blog, I called it weighed down.  I didn't publish it even though it's exactly how I feel.  It talked about how life is measured in weights.  Your born, you are weighed, and oddly judged on that weight, big baby, tiny baby.  Society spends millions of dollars on the weight loss battle, aiming it all towards the battle of the bulge due to over indulgence.   But what about those who can't?  Simply can't, for whatever reason, exercise?  We never think of those people, we just think people are fat because they can't put the fork down.  Well, as I begin to get out of the house a little more and walking has become a far easier task.  I think about all those people, because I'm one of them.  It will be 7 months tomorrow and I'm just starting to feel myself.  I thought I was there a few months back, but a stint of thinking I was super women, had me over doing it.   Dumb thing to do, and now I realize that it's slow and steady that truly wins the recovery race.  This all weighed heavily on my mind...just another form of weight.

So as I whined yesterday and felt overly sad for myself,  I vowed to wake up a little different.  Today I thought about what I'm truly thankful for and the first thing that came to mind is second chances.  I've been given many in my life, so many that I was surprised when I started to think about them.

Growing up in a house of abuse my first memory of a second chance is travelling home in the back seat from the Portage Hotel.  No one was in any state to drive as we barreled back to our house in Stark's Corner.  I was the tender age of 8, my sister 12.  We were sleeping in the van because that's what drinking parents did with their kids, left them there to sleep as they chugged back a few.  I remember the engine's high pitch whine and the feeling of my stomach in my throat as we flew over the hills.  My Mother reaching back with her hand to protect us like an imaginary seat belt.  I remember clearly praying to get us home safe.  A second chance was indeed granted.

Sometimes we don't get second chances as this same road claimed a dear family member many years later, nothing to do with speed or alcohol.  Just bad timing.  I said goodbye to a casket, regrets of not enough visits home, not enough phone calls, now realizing that there aren't always second chances.

Becoming a ward of the court and becoming a foster child was certainly a second chance.  Foster parents and foster siblings who actually cared.  Trusted me enough to go out and cared if I came home.  Food, glorious, delicious food.  Meals around the table like a family.  A packed school lunch.  A shower, running water, a toilet.  A different outlook on life is before me. There is love in this house, I feel at home. Yes this indeed was a second chance.  I am blessed and I know it at the age of 15.  A second chance at life.

My daughter was born with immune system issues.  At the age of 9 she was hospitalized with H1N1, the Swine Flu had found her, despite all my efforts to try and keep her away from it. Fourteen days in hospital contained some of the scariest days of my life.  All I could do was pray as I, like everyone else, had no idea what this virus was capable of.  The insertion of a chest tube is what saved her life.  I am convinced of that, as litres of fluid poured from her tiny plural space.  I honestly don't know if I should look at this experience as my second chance with her or her second chance at life.  Either way, I know how precious life is as we don't always win the fight.

And then there's me, with this whole brain tumour thing.  Someday's when I say it out loud I still can't believe I have a tumour, add brain surgery to that and it becomes almost "movie" like.  I guess I've been given one more second chance.  A chance to live life, even though it's very different then pre-surgery.  I'm here to tell about it and that's pretty fantastic.  I love my second chances...each and every one.

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.

I've Come a Long Way Baby!!

I started a blog post late last night called "Never Say Never"  It was about all the things I never thought would be part of my life, prisms, balance, owning a car and no driving etc!!!  I was feeling a bit ho hum about today being my 6 month post op day and here I am still recovering.  Then I got a txt from my friend Jen this morning that said "Celebrate all your accomplishments!!!  You've come a long way in 6 months."  My first reaction was yup that sure is crazy...the 6 month part.  Then I starting thinking I'm focusing way to much on the the post op number and not on what I have accomplished.  I said a while back that on the 1 year mark (Jan 11th) I was going to celebrate it as a birthday, that must have been on one of my "up"days.  Today I certainly wasn't feeling any "celebration" for my half year mark.  Well, thanks to Jen I've been thinking about all that I have been through in the last 6 months and there certainly is a heap of bad but some truly amazing accomplishments that have come along the way.  For example:

I can always find my mouth now when inserting a fork or spoon.  Since I can't feel the right side of my face, there was always the potential for "fork/face injury"

Drinks only sometimes drool out the right side of my mouth.  Yup it's like being at the dentist everyday for me but I've figured out that all liquids need to go instantly to the left of my mouth, helps to avoid the dribble.

I only tip over in public sometimes, I figured out that a cart is a great stabilizer.

My eyes have been improving, still rooting for them to make a full recovery.

I can climb up and down my stairs without them seeming like a mountain.  Not to say that they don't tired me out but I no longer look up and think "are you kidding me"

I'm alive.  I've survived brain surgery, I'm walking around with a brain tumour and I'm alive, really nothing more needs to be said there, that's pretty awesome.

16 to 41 in 12 Hours :)

I woke up his morning and opened my eyes and there in front of me was 1 of everything.  No double vision!!!  It lasted all of 5 seconds, or a couple of blinks, and then it was gone.  It was enough to make me smile!!!  It's the first time I could see without glasses while on this new prism number, even though it was short lived, I'll take it.

If you have children you will understand the parenting of teenagers (or preteens).  You give them a little space, enough for them to make their own decision, and mistakes, that's how they learn.  However, you reel them in pretty fast if you see or fear trouble coming.  I think as adults we have our own parent that does this for us as well.  Most people believe in something more powerful then them.  God, a guiding spirit, energy, whatever you believe in, can give you the same "guiding" space.  In my case I believe in all three as I don't think any one thing is right or wrong, however, I do believe that God guides and gently pushes me down this recovery road.  Sometimes you need something, anything, to keep your spirits up and I do believe that this morning's 5 seconds of sight was God's way of "reeling" me in.  Like an out of control teenager in a rage yesterday, I had to release this built up frustration that comes with anything traumatic.  If you've experienced it you will understand.  This road is not easy.

A friend of mine, who suffered a very traumatic brain injury many years ago put the following on her Facebook account yesterday:

It's just want I needed to read!!!  I'm not alone in this struggle to get through the challenges.  Thanks to this friend, she will know who she is.  :)  And thanks to God and my guiding spirits for giving me that little gift of sight this morning.  It's just want I needed to put on my "rubber boots" and trudge on.

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.  :)

Garden Love

I've spent my time since my last post trying to wrap my head around my latest bit of medical news.  I went through a few days were I felt 100% sorry for myself.  NOT a trait that I ever allow myself to fall into.  However, I'm guilty, guilty of the "boohoo's", the "why me's" the "what if's".  This sucks, and I'm ticked off that it's my reality.  I've been cranky, teary, upset and angry and that's OK because that was yesterday (or in this case, many yesterday's)

So here's my new reality, nothing has changed other then information, so stop my belly aching and get on with it.  I know I'm certainly not the only person to ever face the reality of radiation, so, suck it up princess,  I say to myself, and trudge on.  In this case my "trudge" led me to my garden, since I can't drive or even take the bus to "get away from it all", no one can stop me from playing in my back yard.

I plopped myself into my garden the other day, what a feeling to get my hands into the dirt.  I've always said I would be content if someone just gave me a patch of dirt to play in.  It's a soothing meditation, that only a gardener would understand.  It's the best release of anger, grabbing that weed and hauling it out.  I've taken back my little patch of garden that has been neglected over the last year due to me being unwell.  I couldn't believe the sense of power and accomplishment I felt cleaning up a small section.  And although it took me two days to remember some of the names of my perennials that I so dearly love, they did come back to me.  My centaurea cornflower, shasta daisy and clematice are all tucked happily without weeds, in their beds.  Which in turn led to me being tucked into my bed with sheer exhaustion of once again, overdoing it.  I now however, have a clear understanding of when that happens, dizziness, unbalanced, exhausted, and the craziest pressure in my head are all very clear indications that I need to stop.  I sadly have not figured out the point just before this happens, always leaving me saying "oh crap" I need to sit down before I fall down.

When I look out at the my tiny patch of garden that still needs weeks of work to even come close to the beauty it once was. I'm so thankful it needs work because so do I.  This is when I realize that it's the only thing I have control over right now, my little patch of dirt is saving my sanity.  It then becomes clear that my garden and I have taken our relationship to a whole new level.

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.

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!!!  :)

Have Tumour...Will Travel

We're back and Cuba for Christmas was fantastic. Certainly well worth all the hard work it took to save for our awesome vacation.  Seeing Cuba through your kids eyes is something I will never forget.  They were in awe of the culture and people just like I was last year.  I couldn't be more proud of their grace and kindness, I am one proud momma.

Having left the day after getting my MRI results I vowed not to think about anything she had to say to me.  Every time I caught myself wondering or asking myself the "what ifs" I'd turn to something of beauty and thanked God for the opportunity to be there to see it.  Of course I had my moments to myself on the beach or in the pool but I think I'm allowed those every once in a while.

The MRI was no surprise really, Honeycomb is still where he was and bubblegum looks like someone popped him.  Just a flat piece of gum stuck in my brain, she referred to that piece of gum as a "carpet", I hate carpet!!!  So I was expecting to her ask how things were going, like physio and my eye sight and she did but then the conversation very quickly turned to options.  Options?  what does that mean, what options?  I thought surgery was the option and then you recovered, got better, went back to work.  Hmmm, not the case.  She said that it made sense to think about radiation while the tumour is small, but of course it is my decision.  She would speak with her colleague about seeing me and providing me with more information.  As we left the office and began our vacation, T Jay and I thought I guess we'll see what they say down the road, it's only information after all.  Well after opening the mail the day after our return "down the road" is only three weeks away.  Geesh, I thought that's a short road, nothing like being thrown right back into it.  As I once again spent an hour or so processing new information in my inward withdrawn manner I thought suck it up.  Me, my family and my tumour just spent an amazing week South, that was my break.  And although I came back to full on appointments again how can you not count your blessings for what matters most, spending time with family.  Yes the vacation we had was not 100% of what I had in mind when I originally booked it before my diagnoses, it was better!!!  Watching them play in the surf, extending kindness to others and just hanging out.  It's going to take a lot more then a brain tumour to stop me from enjoying that.

Time to Clean House

What a day is how I started yesterday's blog and today I start my entry with the same three words, What A Day!!!!  Except this entry is written WITH glasses not without.  Ugh was the thought of the day as I moped and sulked a good part of it away.  How can you go from such an amazing high of being able to see in one day, to the very next being back to head tilting and donning glasses?  I don't know the answer, what I do know is that I still think it was a miracle.  It was a teeny tiny taste of what's to come and although it didn't last  nearly as long as I was hoping, I now know it's possible.

So after spending my day cleaning my house, because that's how I deal with frustration, I realized more then how nasty these floors are.  I realized that the "house cleaning" that needed to be done was again from within.   Be grateful, be thankful, be patient.  It's coming with time, I'm doing amazing and that I AM one of the lucky ones. (now with clean floors!!)