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

This "Time" Was Healing

Have you ever known you were exactly where you were supposed to be at a given moment?  Call it fate, divine intervention, call it what you want, it happened to me.
A few weeks ago I had to actually go into the bank, I know in the day of online banking and bank machines, it's a rarity.  The person I needed to see was no in yet so I went to the Bank Tellers.  Having worked at this particular bank and branch I knew one of the them.  However, this was not the Teller I was standing in front of.  This young lady I didn't know, yet there was no doubt I was supposed to be talking to her.  As the Teller whom I worked with asked how I was doing, I responded with a "I'm hanging in there" which of course led to her asking questions as she didn't know about my brain tumour.  When I told her the young lady standing before me said " my Mother passed away from a brain tumour"  This, one would think would become a very uncomfortable moment, but it wasn't.  I was calm as I told her I was sorry and asked her questions about her mom.  She was calm as she told me, all the while doing my banking transactions, not missing a beat.  There was no doubt in my mind that there was a force that had acted in us meeting that day.

One of my fears is, upon my death (you can't help but think of that when you have a brain tumour) is how are my children going to make out in life.  If I don't get to witness it for myself, will they be successful,  beautiful, well rounded, kind?  Standing before me was a young lady who was all of this and more, and she gave me those answers.  She was successful, beautiful and kind.  I thought about her all day, talked about her that evening.  Something tells me I wasn't looking at her through my eyes but that of her Mother.

Several days later I received a note in the mail from this Teller, thanking me for coming in, how she enjoyed out chat and it was a pleasure meeting me.  I then realized that it wasn't just me thinking of her, she too was moved by our 5 minute conversation.  It was truly then that I realized it was something way bigger then me that brought us together that day.

Over 20 years ago, while working as a Teller at this exact bank branch I was given a small teddy bear wearing a green sweater.  This was a small token from a client who thought I went above and beyond to help her and that my kindness should be recognized.  I've held onto that little teddy bear all these years, he's moved houses many times, but always found his way out of a box and onto my dresser.  I kept it because every time I looked at it I saw kindness and it made me feel good.  When I got in my car after leaving the bank that day, I knew that I had to pass this little bear on.  Now keep in mind, I don't think of this bear everyday, in fact hardly ever.  However, it sure popped into my mind that day.  Not only did I feel like this young lady deserved it but more so, needed it.  The little bear with the green sweater now lives in a different house, hopefully given off that same warm fuzzy feeling only teddy bears can give, especially ones given with true kindness.

It was pleasure meeting you Lauren, thank you for the most amazing 5 minutes of time I've had in a long time.

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.

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

A Spicy Start To October

If someone asked me one year ago today October 1st 2012, what the best part about October was, I would have said the following, the smell of Autumn, the changing leaves, the crisp morning air and it's when Tim Hortons brings out their pumpkin spice muffins.  Yup, those are my October favorites, NOW the best part is, sharing the fact that October is Brain Tumour awareness Month (ok I also love Tim's pumpkin spice muffins, they are the best)  So this morning there is so much I want to share, like the fact that 27 Canadian are diagnosed with a brain tumour EVERYDAY and I was one of them on October 3 2012.  At the time, I had no idea that October was Brain Tumour Awareness Month, and didn't for some time.  I can tell you it's a horrible way to find out.  What I can also tell you, is that day changed my very being, it rattled my soul and erupted a fear inside me I didn't even know was possible.  I will forever be changed by that day. It's the first time in my life that I have ever stood still, paralyzed by the unknown. Life however, does carry on, and I'm very thankful for that.  It's not the life I saw at 41, but like any life changing event you find the positives and try and focus on what the soul needs.  Today, the soul needed a pumpkin spice muffin and that is exactly what the soul got.

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

It's Best to Sit in The Back

Last week was a busy, which in turn means my mind needs this week to recover.  This truly has to be the oddest life experience I have ever had.  I just don't "work" like I used to.  My brain needs extra time for it's thoughts, my body needs extra time for it's daily chores and I'm figuring out that my soul needs extra time for itself.  Healing one's soul is not easy.  I take comfort in reading other's stories.  There is so much encouragement and understanding in the Brain Tumour Community that I find myself gravitating there.  All of these people and their families understand this roller coaster ride.  Days of feeling like you are almost yourself again, just to find out the very next day that exhausting once again took over your entire being.  I take comfort is learning from these families that they too experienced this and it's not easy, it's not fun, however, through positive thought you can make the best of it.  So, here I sit today on another #BrainTumorThursday wondering what I can contribute through social media that will help raise awareness.  Then I realize that the best place for me to be today is riding the back of the roller coaster, watching and listening to all the people in front of me who have already went up and down these hills.  I can learn from each and every one of you on this ride and for that I thank you.

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.

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.

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.

Great Day For Ducks

 Mr. Just Ducky, from NS

Well, it's raining in Halifax again today.  This must be day 30 out of the last 30.  It's really unreal how much rain we've seen here this Spring and now into Summer.  I've said for years "It's a great day for ducks" as a way to turn around the "blues" feeling we all get on damp dreary days.  However, I'm sure I overheard the ducks the other day complaining about the weather.  As you can see ducks in Nova Scotia have their own Sou'wester hats!!!

All jokes aside, I'm thankful we have the great Atlantic Ocean for all this rain to run into so we are not in the same horrific situation of Southern Alberta.  My thoughts, well wishes and prayers extend to those families.

One of the great things about rain is it tends to be cooler and that doesn't hurt my head.  Hot muggy rainy days seems to create a throbbing pressure in there.  You would think having my very own hole in my head would relieve some of that, but I can tell you it doesn't work that way.  Days like today are days I can get some "extra" things done around the house.  However, like anyone on dreary days, a nap sounds better then doing laundry.

Only in Canada You Say? Pity

Proud to be Canadian

Thank you Canada for 4 glorious seasons:  Spring (my favorite) Summer, Fall and Winter (Ick, but some people actually like snow).
Thank you Canada for being a kind Country, and better yet, being known around the World for it.
Thank you Canada for our clean drinking water.
Thank you Canada for our education system.
Thank you Canada for having both men and women in the Military.
Thank you Canada for Women and Men being equal by Law.
Thank you Canada for two official Languages, English and French.
Thank you Canada for our Multicultural Society.
Thank you Canada for recognizing same sex marriage.
Thank you Canada for one of the Worlds highest standards of living.
Thank you Canada for Hockey, Basketball, insulin, the electric cooking range, IMAX film system, electron microscope, kerosene, electric organ, duct tape, and the all important telephone.
Thank you Canada for Smarties, Red Rose Tea, Pablum, Poutine, Beaver Tails, Timbits, and date squares.
Thank you Canada for unique words like Eh, Hoser, screech/swish, loonie, twoonie, touque, Canadian Tire Money, labour, colour, honour, tumour...all spelled with a "U".
Thank you Canada for The Friendly Giant, Casey and Finnegan, Beachcombers, Hockey Night in Canada, Sharon Lois & Bram, Much Music, and of course Bob and Doug McKenzie.
Thank you Canada for the highest tides in the World (Nova Scotia &New Brunswick).
Thank you Canada for CBC.
Thank you Canada for free Health Care (I am truly thankful for this one).
Thank you Canada for my freedom of religion, expression, beliefs and thoughts.  Which allows me to express my feelings in this blog on any given day.

And finally Thank you Canada for this Classic 1977 Commercial:

http://www.youtube.com/watch?v=KAtDXOnmqiM

Father's Day

Today is the day I hated for years.  The kid in elementary school who didn't have a Father.  I always made a card and gave it to my Uncle, who was the closest thing I had to a Dad in my young life.  It was weird and awkward and a feeling I remember to this day.

A Step Father entered our life who turned out to be an abusive jerk.  He spent years torturing my sister and I and without airing all of my dirty laundry, I am happy to report that he did spent a few years in Jail for his act and is now unhappily rotting in Hell.

This began my time of hating Men.  And as blessed as I was to have an amazing Foster Family, there was very little trust in my Foster Dad.  At 15 all men are the same aren't they?  Months past, even a year and I began to realize that maybe he wasn't so bad. Maybe I can trust him.  I didn't hate him by any means, I just always had one eye on him.  When I figured out that I was treated the same as all the other kids in the house I began to loosen up.  I was helped with homework (especially math), I was grounded when I missed curfew just like the other kids, hmm maybe he does have MY best interest in mind.  My guard came down a little, and began liking the idea that I had a trust worthy Father figure in my life.

My time in Foster care was short, just 5 years, but the lessons and values I learned about life during that short time have molded my character to a person that I like.  My life would be very different without their love and support.  I have to this day a great relationship with my Foster Dad.  Thanks John for being a positive influence, a continued voice of support and an overall cool guy.

So Happy Father's Day to my awesome Foster Dad and also to my Ex Husband Todd, who gave me the two most precious human beings I know, my kids.