The Great Brain Tumour of 2013

Well, technically that's not correct, the tumour reared it's ugly head in 2012, but "The Great Brain Tumour of 2013" sounds historically fun.
This time last year I was shaking in my boots, terrified that in 11 days I was to undergo brain surgery.  My only goal for 2013 was to live.  Sounds profound but it's 100% true, I prayed about it, meditated about it and breathed it.  Please, for the love of God allow me to live through that experience.  And I did.  In the physically sense.

Recovery over the last 12 months has been a surprise, so has the knowledge I've received along the way in regards to my health.  There is no better lesson on who you truly are, then taught through the experience of recovery.   As I sit here having no idea what I want to wish for on this New Years Eve, it's a harsh reality that the things I want are not in my control.  So I will go back to my goal of 2013, to live.  This time not with a heart beat or breath, but with personality and soul.  I am not the same person I was a year ago, sadly some of that care free Kelly has been lost, but I would like to find her again.  This year I want to live life because it's precious, because I have amazing children, because I have T Jay, because life is good.  So Great Brain Tumour of 2013, won't you join me in 2014?  You are coming along for the ride anyway, we may as well find some good in it.

Bubble Land

Sometimes I repeat myself and I don't remember even saying it.  Apparently I do it a lot.  I guess there is a possibility that I rewrite blogs.  That would be kind of funny actually, especially if they were months apart.  I'm sure they would have totally differently perspectives.  I find that my attitude is very different now that I'm almost 1 year post op.  I feel that in the beginning I was ecstatic at every little change and accomplishment.  Every appointment brought hope.  In the beginning there is an expectation that you will heal in the medical fields "determined amount of time"  I, of course thought that I would be back to normal way beyond what they said.  It's humbling to find out that healing is only partly in your control and slightly aggravating as well.

So I stand now in a different line, not the line where every Doctor wants a piece of you to get you back to your good old self.  Nope, I'm standing in the "we'll see you in six months line"  This line takes you right back home to sit and wait.  And I do, in my bubble.  I will admit I'm afraid to do things.  Walking on ice has me looking like I'm 103 years old.  T Jay said we should go skiing, and I said are you out of your mind?  I'll go with you but I'll be in the lodge drinking hot chocolate.  I just don't think I will ever ski or skate again simply out of fear.  I'm afraid of banging my head.  Now that this tumour thing is stretching into it's 3rd year as it all started in June of 2011, when I tried to take up jogging again.  Bam, welcome Trigeminal Neuralgia to my life.  My tumour saying hello, and oh by the way I've got your cranial nerves all wrapped up.  This tumour is stubborn, not unlike it's owner, and won't leave, can't leave because he's hanging out with the carotid artery.  I saw the pictures, I've painted my own picture in my head and the thought of falling and rattling that intruder around scares the life right out of me.  So I sit in a fearful bubble, a place that is very unfamiliar to me.  I need to learn to like Bubble Land or move out...or perhaps it's move on.          

B I N G O

Bingo is a multi use word.  For example, when someone doesn't understand something:  "OHHH you mean THAT hardware store had the sale" and you can respond by saying "bingo!!!"  There is a popular kids song called Bingo.  B I N G O, B I N G O, B I N G O and Bingo was his name ohhhh" (you are all singing it now aren't you? haha)  Finally there is the game, played at school fairs, town fairs and events I am sure weekly.  Once upon a time you used the little green and red plastic circles to cover the numbers that were called.  I know this as my grandmother had bags of them.  Then came out the "bingo dobber" which comes in many colours and is an ink pad more or less, now used to colour the numbers called on the card. (and your hands and fingers)

So last night a group of friends were heading out to the local Fire Department for their Christmas Bingo and did I want to go?  Now I haven't played Bingo since I was a teenager, so we are talking over 20 years ago.  I asked T Jay if it was loud, as noises and I are not getting along right now.  He assured me it was a pretty quiet and tame event.  T Jay has been going to this Christmas Bingo event for many years as one of Santa's helpers.  On goes the hot Santa suit, to give candy canes and hugs to the many seniors who attend this bingo.  He loves it, they love it and I must say he certainly is very good at it.  :)

I joined my friends, realizing very quickly that this was a little more confusing then I remembered.  One of my "issues" is the inability to focus on too many things at once.  This coming from the Queen of multitasking, it is a bitter pill to swallow.  I notice around the house if I'm trying to do something and more then one person is talking to me I just can't function.  Well last night that reality was taken outside the comfort of my 4 walls and truly put to the test.  Lets face it Bingo is not hard, number called, dab your card.  However, the concentration that I had to do was insane.  There were times I was looking for the "O" number under the "G" column and when I realized, the next number was called and I became flustered.  Add someone trying to talk to me and the whole thing was like someone took my brain and shook it.  I didn't win anything, I could have had bingo a hundred times.  I would have never known as I was missing numbers and concentrating so hard at dabbing the numbers that I was forgot to check to see if I was even close to winning.

Today my brain hurts and that is not sarcastic or a joke, I am finding it hard to manage.  This blog is in it's 4th hour of trying to put it together.  I am also hugely disappointed, frustrated and just plain mad that still after one year my brain is not where I want it to be.  I have been doing a program called Luminosity, it's like physio for the brain, but it doesn't help you with real life situations.  Now I guess, I need to be on a quest to find out how to get physio for the brain.  I was taught how to retrain my brain to deal with my balance issues and although that is not perfect I am certainly better then I was.  But where do you get brain training?  You would think real life would be enough but that actually seems to be the hard thing.

I'm not where I thought I was, nor am I where I want to be.  Who has control of that?  Me.  It's becoming a reality that my super woman brain has taken a hike and I may just have to settle for "Kelly's brain"  Perhaps striving for the crazy multitasker who could do anything is simply setting myself up for frustration and tears.  Ah yes, what a B I N G O moment this is...

Someone Get My Mommy!!

As I sit in front of the fireplace typing this in our newly renovated "old" house, I have to say that the move went smoothly.  Not everything is out of our other house yet but since we plan to change some things in it before we sell it, we are certainly in no rush to empty it's contents.  Everyone has their tooth brush and bed so we are in good shape.  Although all I've done is put bags etc in my car I have certainly over did it and now I have my first cold since brain surgery.  One would think big deal but it's actually different.  With constant pressure in the back of my head anyway, and now pressure in my sinus I truly feel like my head will explode.  UGH!!  What's even worse is I'm whining about it...I think I have a "MAN COLD."  You've seen the commercials I'm sure for Vicks Nyquil, where they make fun of the poor man who is flat out with "just a cold."  That's me..Whaaaaaaaaaaaaa!!!!  However, great marketing because as I sit an whine about it I plan on buying some Nyquil today to hopefully let me sleep tonight.  So the boxes and bags can wait and I will slow down as everyone is telling me to.  I'm hearing you all and admitting to it, I guess I'm not pullet proof or in this case "germ proof" like I think I am (It's a super women tendency).  So Nyquil by night and an afternoon nap with the puppy on the couch by day, will get me through this cold, puppies make good heating blankets :)

Cookie Cutter Kids

My daughter is a competitive cheerleader and loves it!!  Cheerleading has come along way from pom poms and raw raw raw.  It's crazy stunts with amazing tumbling all synced together to form an incredible display of hard work, discipline and love for the sport.  These girls work hard for 10 months of the year to compete a handful of times over 3 months.  The combination of dance, with gymnastics and meticulously counted stunts of small humans flying through the air is a site to see.  That all beings said these girls practice and practice a lot.  Our club has amazing coaches who spend their life at the gym working these kids to perfection. They have planned what they hope to be a winning routine and need the kids to give 100% every day they are there.  Well, we are talking kids here and last night as I sat and watched practice I was within seconds of leaving and sitting in my car.  I love watching them practice, I am amazed at how quickly these girls learn, I just wish they would listen to their coaches.  Almost every practice my daughter get a chat in the car about how important it is to be quiet and listen to them.  I'm sure she get sick of hearing it.  Last night the pressure in my head, like today is almost unbearable.  Whatever this rain/wind storm is, is NOT good for my poor little head.  So, last night I just couldn't deal with the noise because my head was going to explode.  However, this morning I thought about how many times the coaches say stop talking or blow their whistle and if I were a coach I would be crazy by now.  I said to my daughter last night if I were your coach you guys would spend half your class doing conditioning when you don't listen and maybe then you would realize how serious you need to take this.  Her response, "that's why you are not a coach".  Welllllll, actually my dear I'm not a coach because I was never a cheerleader and I'm sure a cartwheel or round off right now at my age and health would have me in traction, but I am a mom and I am an adult and you guys lack respect for your coaches by not listening. Have you noticed that you all get really quiet when you are made to do conditioning because you were all taking, again If I were a coach you'd spend half your time doing sit ups  As you can imagine the ride home was all about respecting their time and doing what you are told I'm sure she heard blah blah blah as all teenagers do.  So what is the answer, do I take my poor tumour ridden head and go to Tim Hortons where it's quiet and has hot tea.  Or do I stay and watch as I love to do and suffer it out?  I sit and suffer it out, because every time I go I am blown away at the athletics I see and I'm proud of my daughter's accomplishments.  So what's the answer to get 30 teenage girls to stop talking and listen?  HA, wouldn't every parent, teacher and any other person involved in mass teaching like to know?  Promise them a win, maybe some cookies? Nope, don't promise them anything, teach them respect.  Something that has been lost in our generation of parenting where we all feel that we need to undo the parenting of the past.  Parenting through a brain tumour sucks, I'm tired, medicated, in pain and cranky probably more times then not. However, there is no choice in my world but to try and teach them that respect will get you  through life further then disrespect. I don't want cookie cutter kids, I want kids who are not afraid to express themselves, their opinion and their rights as long as it's done with respect and if possible, quietly..... very, very quietly  :)

The Big Black Cloud Called Anger

I think it appears as if I'm mad.  Several comments from people who love me are indicating this.  One in particular said you know what I hear when I read this post (Ahhh what a good little tumour)?  I hear GRRRRRRRRRRR......... I think  "Hmph, Pffffft, now I am GRRRRR".  So I reread my post from yesterday and yes it's true I am a wee bit mad at my lack of control in this whole situation.  Maybe I'm just mad that I have a brain tumour, but perhaps it's time to seek some professional counselling to deal with the trauma to my head but more so the trauma to my soul.  I think when your soul, your inner being, your primal connection gets angry, you create an aura of a nasty black cloud, and little frigg'n wonder I say, but it's not a place I want to be and I, yes I, can control that, so I will!!!!

Ahhh What A Good Little Tumour

Results are in, no regrowth.  As you can imagine that is the best news someone with a brain tumour can get.  I kind of figured as much as I didn't get a call the day following my MRI, at least the no call meant nothing drastic was going on in my head.

Dr. Mulroy is a kind soul who is suited for what must be a draining job.  He answers all our questions, shakes your hand and a feeling of genuinely wanting to be in your presence is evident.  A rarity in the Doctor world I find.  So if I have to have a radiation oncologist I'm glad it's him

So here is how the appointment went.  He said there was no change, which is good, and then some silence.  I immediately pipe up and said I'm sensing a "BUT"?  He very quickly said, there's no "but" it's good and showed us the comparison of my last scan to this one.  I like to see my scans, it's my tumour and I want to look at it.  He said that if the tumour was acting up I would have symptoms of tingling and/or numbness in my face or diplopia (double vision)....UMMM I have those, they are wonderful left overs from my surgery.  Hmm yes, yes you do was the response I heard and again he said that those are the things we would look for if the tumour was growing.  Brain "shut down" happened as I try to process this information...well if this is what you look for and I already have it...then where does that leave me.  I know that T Jay is asking questions but I have no clue what it was as I come back into the reality of "pay attention Kelly"  He said that he thinks we should adjust and change medications to try and calm the trigeminal neuralgia down.  Now the great news about having about only 95% of the feeling on the right side of my face is that I get shocked many times a day but prior to surgery the shocks to my face would have been about a 12 out of 10 on the pain scale.  Now they are about a 4/5, certainly a pain that's highly annoying and lets face it, they suck, it's exhausting to be snapped in the eye and teeth over and over again every freaking day but face numbness has been a benefit here.

So ok great lets increase and change the meds.  Since I am highly sensitive to meds we will do it 100mg a week AGAIN until things are under control.  Cool, I'm good with that.  Now, since there is no change in your MRI I think we should get the meds under control and then chat about radiation in the new year, as starting anything now this close to Christmas...........................and that was the last thing I head for a few minutes.  A Charley Brown whaa whaa whaa whaa whaa moment kicked in as the dreaded Christmas word has once again come into play in my life.  Now don't get me wrong do I want to jump on the radiation train full speed ahead?  Umm NO, but how my type A personality works is this...very simple...Kelly has a brain tumour, not all of it was removed, the hospital has radiation, if the hospital zaps Kelly's tumour, Kelly is all better and we just move on getting life back to normal, Kelly is fixed.  Doesn't that sound right?  So as the lump forms in my throat and my face feels like it's so red it's purple with frustration.  I can't stop thinking "why Christmas, why do you hate me so much"  I'm now back listening to T Jay and Dr Mulroy talk and I hear, that the radiation odds are only about 30% for relieving my symptoms....umm what?  What happened to my theory of zap, fix, move on?  I hear that he will call me in January to see how I'm feeling with the change in meds and we will look at the radiation either then or after my next scan in May.

Next comes what I like to call the "sobriety test" walk in a straight line, then heal to toe, close your eyes, all the things that I spent months at the Balance and Dizziness Clinic perfecting.  I've got this I think, watch this...I stand up and what happens, I stumble, like a drunken fool and I instantly am mad at myself for not being able to show off my new and improved skills.  I suppose if anyone is to see the fact that you still tip over it's your Doctor but we all want to prove how good we are at something.   I do however, feel the need to say that I've gotten so much better because of the help from the Clinic.  So once again the brain vs. Kelly didn't go my way and the brain decided that it was at that exact moment to do the two step.  grrrr

I ask about work, life going back to normal, when when when, and basically state that I'm done with this recovery thing and don't ya think this is a bit excessive?  I was told 4 to 6 weeks I'm almost a year out and seriously what's the deal?  Some people take longer is what I hear and he has seen people improve even up to two years.  OMG is what I think.  Ok so work...lets get back to that, you are not ready is what I hear, you are still recovering and you need more time.  Lets give your brain  more time to heal.  OMG is what I think again, time time TIME TIME and then I can't take it anymore and the water works start.  The blubbering about time and my frustration with this whole thing is beyond and that I love my job and I miss it, and I feel there is a big part of me missing.....But you are not ready, is what I hear and a Kleenex box is gently given to me.   We will talk in January, lets see how the meds do and you are not resting, you need to get a restful sleep, I will send a letter to your family doctor...hang in there.

So, the great news, no regrowth, the great news, radiation on hold, the great news it's still a slow growing benign tumour.  The bad news, radiation is still in my future, the bad news is I still have a brain tumour, the bad news is it's still going to grow and now matter how much I play the Kelly vs Brain game, it's always going to win.  I realize that I am lucky that it's not cancer, I count those blessings everyday.  I do also realize that because it's not cancer, I have the luxury of waiting, hanging out in the system, a place I like to work in then go home, now I feel like I'm living in it, from home.  I am however, proud of my little tumour for behaving and not growing, if I have to have one I want one on it's best behavior.

The image below is my head, basically cut in half, the tumour is on the right, images are reversed on MRI's.  As you can see the white blob is what is left of my tumour, a MUCH smaller white blob then I had.  This guy has a nice little grip on my cranial nerves and is hanging out with my carotid artery making it "inoperable".  So I say ahhhh what a good little tumour with a slight sarcastic tone as he has taken up house in a crappy location but as long as he doesn't take out a mortage to add an addition he will remain "a good little tumour"

Maybe I'm Over Thinking It

Halloween, my favorite time of year.  I had a blog post all written and with all posts, I have to read and reread it several times as I miss words a lot.  The post was all about how this year was very different with both children heading out trick or treating with their friends and suddenly I found myself in a position I was not used to.  They didn't "need" me.  A sense of overwhelming sadness and a sense of pride of two well rounded children growing up into teenagers had me with conflicting views in my head.  The post was also a bit of a pity party of how I wasn't really able to fully enjoy Halloween this year as I am one of those nutty folk who love to over decorate for the occasion.  Just as some of you do for Christmas.  Then before I had a chance to hit "publish" to my blog site my cell phone rang with a sobbing child on the other end, she had sprained her ankle in gym and could I come get her.  This ankle has been trouble since she was 5, this being her 4th good sprain on the same side.  Of all the days, Halloween when they travel door to door getting handfuls of treats from complete strangers (everything we have taught them as parents not to do, except of course on this day), she was now on crutches.  Her pack of friends, slightly bent out of shape that she was not able to join them had her in more tears then the ankle.  My heart as a mom was aching that she was not able to go out for Halloween but also aching for her as she was realizing that friendships are measured in groups at this age and not as individuals.  She was not able to be with the group, and nothing more could be done about it.  So Momma sprang into action with the aid of Auntie Laura and we took her to as many houses as we could find that did not contain any stairs (not an easy task around here).  One of us would carry her treat bag as she hobbled up on crutches to claim her Halloween candy.  People being overly generous when realizing that the crutches were not part of her Football player costume.

So I guess Momma was needed after all but this of course was not how I wanted this to go down.  I'm happy to report that the ankle is feeling better and the Halloween candy was devoured in a matter of days.

My favorite activity (the MRI machine) was scheduled for Monday after Halloween.  On our way there I got a call that it was cancelled due to the machine breaking.   Really, not a surprise as luck is not normally on my side.  It was later rescheduled for the next day.  I'm getting better at it, as this time, the Techs asked me to move my toes to make sure I was ok.  I always think just stay still so they don't have to redo any pictures, the less I move the quicker I can get out of this tube.  I now close my eyes from the moment I lay down and as they slide that cage like thing over my head and pad the sides, my eyes stay shut as tight as a clam shell.  When they pulled me out to inject the dye, my eyes remain shut.  She asked me if I had a phobia of needles, inside I chuckle to myself, and with eyes still closed I say "no, I'm a Phlebotomist I just hate MRI's"  and with that and some dye racing through my veins I'm glided back into the tube.  It always seems like it's a long way in with your eyes closed, one day I'm going to get brave and look, maybe next time.

My phone didn't ring the very next day like three MRI's ago so I am going to take that as a good sign.  I will however, know more on the 19th as I'm back to see my Radiation Oncologist.  Looking forward to the results actually.  Well perhaps that's a stretch...I'm hoping for no change, I guess if you have to live with a tumour you want to live with one who has learned to behave itself and just hang out.  With this change in weather however, my tumour throws temper tantrums and I can't seem to get this toddler under control.  It's truly one of the most frustrating things to know that your brain controls your body and all you have to do is think something and you can make it happen.  It can be simple like move your arm or complex like drive a car but your can't think your tumour out of your brain. I've given up on this Kelly vs Brain battle as control is something we don't have, at least I don't think we do.

The MRI Prayer

T'was the night before the big MRI
Not a creature was stirring but I did let out a sigh
All the papers were in order
Tucked well in my purse
Hoping tomorrow will not be a curse
I'm praying the tech's needle, has no pain
As the contrast die travels through my veins
I picture it surrounding my tumour and brain
Hoping there is nothing more I have gained
A no change MRI is all that I ask
As I prepare to be fitted for a radiation mask
The next chapter will start on a totally different book
I have no choice, I must take a look
So tonight in bed when you say your prayers
Perhaps you could slip my name in there.

I Think They Heard Me

Five days ago I sent out a tweet that said "Hey #Halifax did you know it's #braintumorthursday to raise awareness that October is also Brain Tumour Awareness Month in #canada #btam.  That's all it took for Julia Wong from Global News in Halifax to call the Brain Tumour Foundation.  Hours later I received an email from Meghan at the Foundation asking if I would be willing to tell my story.  That I was the first person she thought of when a reporter called her from Halifax.  I instantly said of course I would and it wasn't until a while later that we all put the pieces together that it was because of my tweet that Julia called and she was now interviewing the "tweeter"  Proof that one little tweet on #braintumourthursdays can make a huge difference.

The interview went well considering I've never had one before, except for a job of course but they don't normally have a camera pointed at you.  I was not as nervous as I thought I would be.  Julia was as lovely as they come, so easy to talk to and made us both feel very comfortable.  I told my story as I was asked to as did T Jay and they, the news people, pick and choose what they want or need for their story.  I think she did a great job in raising awareness for the Brain Tumour Foundation's request for a national registry.

I've been asking all month if anyone can hear me...speak up, write to Government, with awareness comes change and I think I did it.  I think they actually heard me!!! You can hear and SEE me by clicking HERE

It's not too late to write to Government yourself.  Click here and fill out the very simple form.  You will be helping so many people with your few words, and as I learned today, words are powerful.

This Ain't No Magic Mushroom

The path was soft under her feet, so much so that she stopped to look down as her feet sunk into the grey walkway. As she followed the twists and turns her coral and blue skirt danced behind her as if a mild sea breeze was facing her.  She thought it was so odd for it to be breezy in an enclosed area.  As she followed the path, movies played, people laughed and images of familiar people appeared beside her.  The enclosed area became very dark as she had to duck to enter a room.  There before her was this huge ball, as she got closer it became clear that it was a mushroom.  She stood still for a moment and gazed around catching her reflection in the mirror, the reflection was me.   I was walking the path, I was wearing the coral and blue skirt I was inside my own head and there before me was the answer to my question about my brain tumour.  All these Doctors and all these specialist, and I, little ole me, figured it out, tumours are mushrooms.  I start screaming "let in some light, the light will kill the mushrooms"  I think I'm so cleaver having figured out what thousands couldn't.

And then, I woke up.  I don't sleep well, and I don't dream much, perhaps it's the meds but this dream was as real as this computer I'm typing on right now.  Clear as a bell and sadly disappointing that it was "just a dream"  Perhaps my mind is working over time as I prepare for my 4th MRI on November 4th.  It's been almost 10 months since my surgery.  Will it look the same as post surgery, did the tumour they left behind grow?   If only the upcoming radiation was as simple as opening the curtains to let in some light.  Ugh, tumours are hard on the head!!!!

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

You Have A Brain Tumour

October 3rd, here it is, the day one year ago I heard the words, "you have a brain tumour".  Shock was quickly replaced with uncontrollable sobbing, unable to catch my breath.  I don't remember the last time I cried like that.  Fear is a horrific emotion.  Today, one year later, the fear is still there but more so due to the unknown.  I was wondering how I was going to feel today and I can honestly say that my stomach is nauseous.  Kind of silly, it's just an anniversary, but like any anniversary good or bad it can spark emotions.   I guess things would be different if my life was "back to normal" but here I sit, still recovering, still feeling like crap most days.  Have you ever whacked your finger really hard, closed it in a car door?  Every time you drop your hand it throbs and hurts so much that you raise your hand to your chest for relief.  Well my head does that, right in the mastoid bone, which is just below the hole in my head.  I'm sure you can see the problem, there is no place to raise your head, to stop the throbbing.  Everyday I live with this, throw in some good headaches, some shocks to the eyeball, eyebrow and lately the teeth and you got yourself a recipe for exhaustion.

So what is the solution?  A better attitude today might help me, be thankful, upbeat, keep positive, are all things that make life easier to cope with.  However, some days like "you've got a brain tumour day", I just want to be me for me.  Not the "everything is ok" me that I do for everyone else, so we all cope. I'm allowed that day once a year.

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.

Up Up And.......

Something both shocking and amazing has occurred to me in the past few months.  My kids don't remember all the cool stuff I did with them when they were charging through the toddler years.  It then painfully occurred to me, that it was MY memories that they didn't remember.   I've sat on this for a few weeks and have come to the realization that it's ok that they don't remember finger painting, homemade play dough, play dates or museum outings.    Because THESE are the influential years, the preteen and teenage ones.  These are the years my kids will remember and I had to throw a brain tumour in there for them.  Ugh...I've cried about this, sobbed really, thinking why do my kids have to deal with such a terrifying burden at such influential ages.  That is not fair my friends, not fair at all.  However, the only fair I know is the one with the ferris wheel, so just like the Merry go round we need to hop on.  I will take them as high as I can while I can and hopefully we will get many more years going around and around.

 There's nothing stopping me from taking some homemade play dough up there with us is there?

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.

#BTSM

Yes that's the Twitter tag for Brain Tumor Social Media, Thursday is here again.  A great way for information to get passed around about brain tumours and the important need to reach as many people as possible.  Now I'm not a Doctor, obviously, however, reading articles, speaking and connecting with others, sometimes shows that Brain Tumours are the final diagnoses in the long chain of events.  Why?  Is it the cost of MRI's, is it that sometimes a brain tumour has to cause a significant symptom before it is recognized that it's even a possibility.  Not everyone "smells burnt toast".  So here once again is a list of symptoms that could possibly mean you need to speak to your Doctor.  Thank you Brain Tumour Foundation of Canada for this information.

~Behavioural changes
~Cognitive changes
~Dizziness or unsteadiness
~Double or blurred vision
~Frequent headaches
~Hearing impairment
~Morning nausea vomiting
~Seizures
~weakness or paralysis

Remember brain tumours do not age discriminate, if someone you know and love has some, any or all of these symptoms, talk to your Doctor.

For me it was headaches, migraines with loss of vision, dizziness and finally, Trigeminal Neuralgia.  Not the diagnoses I ever wanted to hear but was certainly relieved that there was something causing the madness in my head.

Help Wanted, Apply Within

We are into the second week of September and I have no idea where the Summer went.  All I know is, it was lazy.  Now it's back to crazy ville with early mornings,  late nights and Doctors appointments in between.  I attempted WAY to much today thinking if I was going out I should get "things" done.  Yes it's a common theme, it is safe to say that I'm stupid when it comes to having no idea how to take it easy.  And yes, I always pay a price when I do it, do I learn, somehow I don't!!

So last night I attended my first support group for those of us walking around with these blobs we call brain tumours.  I really didn't know where I fit in, oddly enough since I too am sporting one of those blobs.  I guess it's more the support group thing, I've never been to one before.  However, before long it was easy to see that I will be able to learn a lot from the others and I'm sure in time will take comfort in knowing that someone else actually understands.  Also hearing the common theme of allowing the brain the time it needs to heal in conjunction with dealing with visual/balance issues, made me realize that I just need to get over my superwoman self.  Ugh!!

Now that I'm "out of the house more" it has become evident to me that writing to communicate it way easier then talking.  I can spend hours writing a blog, it's sounds good, planned and organized when I hit publish.  However, talking is instant communication and when my brain is over tasked, my thoughts and harder to form.  It seems that someone took the filing cabinets of my brain and mixed everything up.  Dear Lord, I've lost my brain's secretary!!! I need a new one ASAP I wonder how a job add would read for that?

Wanted: Secretary

Looking for an experienced Secretary who has excellent organizational skills.  Must have advanced working knowledge of the inner brain filing system, which includes current events, past skills, memories and the body's inner workings. Must be able to multitask in an ever changing brain which is under a great deal of stress. Be able to demonstrate and manage routine correspondence and file appropriately.  Confidentiality is a must.  Selected applicant must understand that this brain's filing system was breached in January and all previous files are currently misfiled and under review.  Some Personal Assistant duties may also apply which include but not limited to; public speaking, running errands and attending Physician appointments to take notes.  Finally, this applicant must have a strong enough personality to indicate to owner when to stop and rest.  

Any takers?

Pain In The....

So the last little bit my Trigeminal Neuralgia sends "subtle" shocks to my cheek but nasty ones to my eye ball.  I can't feel my cheek or eye ball.  Nope...no feeling at all, none in my eye brow or forehead either.  But today I got sucker punched.  I can honestly say that nerve pain in places you can't feel is not only weird it's down right mean.  It's like having a bully live inside your own body.  This bully decided to stab me in the right eye brow, yes the one I can't feel.  It's exhausting and quite honestly I'm a little disappointed in my brain.  It's the whole I control you...no no you control me thing we have going on...brain vs Kelly.  Now if I was a betting women I would pick me, cause I'm a get out of my way I can do anything kind of girl...no chance for a brain.  However, I've heard rumours that this "brain" thing I'm up against has some pretty sly tricks up it's "cavernous sinus abutting the cerebellar peduncle"...ya that's short for a stupid location for a brain tumour....see "it" thinks it's soooo smart with all the fancy words but really I have "google" I can look that stuff up, which in turn makes me smarter then the brain.

To answer you question...NO I have not been drinking, just hanging out with the overly smart brain that thinks too much, which really is a pain in the.........

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.

It's Snowing in August

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

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

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.

It's a # Kind of Day

It's #BrainTumorThursday.  The day when all my fellow survivors flock to twitter to raise awareness.  Last #BTSM (which stands for Brain Tumor Social Media by the way) talked about what a brain tumour is and how they can be Primary or Secondary, Malignant or Benign, any of these are a pain in the brain to say the least.

I get a lot of support from a couple of websites but the one I head to most often is Brain Tumour Foundation of Canada.  It is FULL of all kinds of useful information, support and others just like me.  I rely on their facts because they pertain to whats going on in my neck of the world, Canada.  So here is just a few unbelievable but true facts: (Thanks BTFC for this information)

~Every day 27 Canadians are diagnosed with a brain tumour.  EVERYDAY...think about it!!!
~There are 55,000 Canadians surviving with one in their head this very second
~There are over 120 DIFFERENT kinds of Brain Tumours.  Seriously 120+
~Primary brain tumours (which is what I have, we talked about that last week) occur in about 8 out of 100,000 people (I should buy a lotto ticket!!!)  The number rises to approximately 32 out of 100,000 when the metastatic tumours are included.
~In the first year after diagnoses (Mine will be October 3, which just happens to be Brain tumour awareness month by the way) the average patient will make 52 visits to their health care team (These can include Neurologist, Neurosurgeons, radiation, blood work, physio the list goes on and on)
~Brain tumours are the leading cause in solid cancer death of children under the age of 20.  Now surpassing acute lymphoblastic leukemia. Third leading cause in solid cancer deaths in adults age 20-39
~Because brain tumours are located in the "command centre" of the body, emotions, thought processes, movement and life in general, they can dramatically affect an individuals life.
~Currently the Canadian Medical System does not tract primary brain tumour stats (hmmm What's up with that?)

As I've mentioned before I also frequent and I'm a member of It's Just Benign a site that is there to help those of us who have benign brain tumours, because they suck too!!!  I guess the point of today's post is to get the world out and educate.  Brain tumours are big, bad and scary but with the support network I've built and found through social media sites I'm coping and that's pretty awesome.

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.

Brain Tumour Thursday

Although I've been walking around with what's left of my brain tumour for 7 months now.  I'm just figuring out that there is an entire social media world who dedicates Thursdays as Brain Tumour Thursday.  Throw a # in front of that with the American spelling and you get #braintumorthursday on Twitter  Who knew?  Obviously not me until today.  So I guess since I have one of these life changing blobs in my head I should jump on the Thursday band wagon and educate my followers.

Here's my first Thursday's contribution:

We will start with the basics today...What is a brain tumour?  It's a mass of abnormal cells in and around the structure of the brain.  There are primary and secondary brain tumours.  The difference is, primary originated from cells within the brain and stays there.  Secondary originated from cells somewhere else in the body, such as breast cancer.   Brain tumours are not well behaved little creatures and I will talk more about their teenage like behavior next Thursday.

It's Not Just Another Day

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

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

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

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.

Happy Belly on Hot Days

As I said in my last post I've been trying to figure out things I can do for my health. One of my health problems that is totally unrelated to my brain tumour is diverticulosis.  This little problem I have can cause big problems if I don't keep in check.    Diverticulosis are small pouches on the inside of the colon..  These pouches are not normally a problem unless you misbehave with your diet and then you can develop painful diverticular disease.  The symptoms of this are similar to Irritable Bowel Syndrome, pain, in my case constipation and more pain.  It's awful.

So one of the things that I figured out in the past two years is my body does not like wheat products, I have a Gluten Intolerance.  Gluten is in EVERYTHING!!!  When I took gluten from my diet, suddenly the painful bowels took a hike.  As long as I stay on the diet, I'm ok.  Well, I love bagels, and bread, and tea biscuits, and cookies and sauces, and...you get the idea, it's in everything.  UGH!!  So back on the Gluten Free diet I go.  It takes a few days to get back into it and it helps to just not go anywhere so you don't have to see yummy delicious gluten foods.  HaHa, although that would help, reality is you just have to stick to your guns and do it.  In a few days I started feeling better as I always do when I jump back on my gluten free wagon.  This time to treat myself I bought Betty Crockers Gluten Free Cake as a treat.  Now normally anything Gluten Free in a box or bag is nasty!!!  However, this cake was so yummy that it lead me the the Betty Crocker web site and I found all kinds of Gluten Free recipes...my mouth was watering.  I am beyond excited to try out a few of these.

Hopefully if I make my belly happy, that will make my bowels happy which in turn has to make my head happy.  Now if I could just remove the humidity from the weather here in Nova Scotia.

Time vs Thyme

It's been a little while since I posted something.  I've kind of had my head into brain tumour research.  From a survivors perspective, that's "Google" research.  What I'm finding is there really is not a whole lot of research  for benign brain tumours.  I'm finding heaps of information about cancerous ones which is fantastic and I've learned a lot.  Some of the information can certainly be crossed referenced.  However, what seems to be misunderstood is how benign brain tumours can be as serious as cancerous ones depending on their location.  Can even mimic symptoms.  I've joined this great website called It's Just Benign founded by Beth Rosenthal who had a benign brain tumour and still suffers the effects.  She started the website because she too was having trouble finding information that wasn't cancer related.  It's a great site with lots of information and a great place to connect with others who are living with lingering side effects.

I've been attending my physio which is working wonders but have to ask myself if there something I'm missing.  Is there something I can be doing for my own health.  Something I could be eating, a supplement I could be taking?  Some sort of alternative medicine. I've seen a wonderful massage therapist named Mary Steckle for years.  She works out of Active Approach in Halifax and specializes in Craniosacral Therapy, Visceral Manipulation and Myofasical Release.  She has been working on my "head and body" for years but like anyone who has treated me in the past for my multiple medical complaints, never suspected a brain tumour.  I've seen her once since my surgery and think it's time to go back.  

Sadly, because of my balance issues I've hurt my knee.  I've tweaked it catching myself off balance I think, however, physio is telling me to get an x-ray as it's been hurting quit badly for 4 weeks.  I wonder if Mary could fix that?

My eyes have improved once again, great way to end a blog post, with good news.  I'm now sporting the lowest prism possible, a number 1.  Am I a number 1?  No, I'm actually a 2, however, like always they give me the option to push my brain and eyes to work together.  So of course, I choose to push it.  It's a bit of an adjustment but I knew something had changed as my eye was hurting with the glasses on and with them off, I knew it was time to see the eye clinic once again.  They retested everything which was great.  My right eye is still not in line with the left but has improved.  She did tell me that they are not able to fix all of my visual problems with prisms and once again time is the only way to tell if my brain and eyes will once again work together.  Time, Time Time...  Maybe my alternative medicine is to start cooking with Thyme?  My perfect anniversary present from T Jay...Thyme in a can, open, water and once again wait for things to happen.  At least this "time" I get "thyme"

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.

Rain+Brain=Sane

Finally, some fresh air!!!  It has been a couple of really hot days here in Halifax and it's not something we are used to around here.  We live on the coast, so it's always damp, add hot sunny days with a Humidex and you get temperatures in the 40's.  Yikes, it was sticky!!!  When you are lacking energy, adding that kind of humidity, you get a girl who was excited to go to Kent Building Supplies simply for the air conditioning.

I swear they turned off my heat regulator switch in my brain.  I picture the inside of my brain kind of like a breaker panel in your house, but I can't get at it to reset the one that's tripped.  The right side of my head feels like it is expanding in the heat.  Pushing against my skull causing sharp pains to zip across my head.  Speaking of sharp pains, yup I've had to up the meds again.  I held off as long as I could without adding another 100mg to my dose but on Thursday when I was shocked 8 times in a two hour period, it was time.  It's not the end of the world if it keeps them at bay, I just can't help but wonder (and of course picture) what is currently going on in my head to cause the Trigeminal Neuralgia to be back.  Is it regrowth, is it permanent damage?  I wish they put a little piece of plexi glass in my head so you could peek in every now and then and  say "yup, tumours' looking good, same place, same size, it's all good."   I guess that's what an MRI is in a way, but I'm impatient and hate waiting for someone else to tell me what's going on.  It's that whole "I'm not in control" thing again.  Since I can't do anything about that, other then accept it, lets move on.

I think my eye might be getting better.  I have that pulling feeling happening from within my brain to my eye.  Kind of hard to put into words, but that's how it feels. I'm hoping to see the eye clinic soon so they can retest.  I'm 3 days away from my 6 months out mark.  I can't help but hear the words of the eye clinic " usually where you are at 6 months is where you are going to be".  Now I certainly understand that 6 months is a rough number and healing is taking place every day.  You do however, have to understand this girl thought she would be back to work in a month.  So brain you have until July 12 to get it right!!!  ;)

All jokes aside I know that things won't ever be the same, there's a tumour in there, doing what it wants when it wants.  In the last couple of weeks I either smell or taste metal.  I can't really decide which it is, I think it's smell, which has led me to cleaning things that I thought were at it's cause.  Until I had the smell/taste in a parking lot and knew it was not something in our house.  Maybe it's me?  Since I shower daily I don't think I smell like a rusty old nail, but as I'm all too aware this last year, anything is possible.

Well, Isn't this Funny

Canada Day I had some fun writing about the things that make our Country great.  One of my earliest memories of being Canadian is of the Red Rose Commercial from 1977 "only in Canada you say?  Pity"  I was 5 years old when this commercial played on our black and white TV.  I drink Red Rose and only Red Rose tea to this day and still have some of those little tiny figurines tucked away from when I was a child.  I played happily with them, chest height on the window ledge.  I loved when a new box was opened to see which one was inside.  Well guess what?  THEY ARE BACK.  How exciting is that!!!!  I don't think I will be playing with them on the window ledge this time, I will however, take more care not to accidentally snap the head off the little boy. He was part of the Nursery Rhyme collection, he hung out with the goose and the cat. :)

Red Rose tea - Product Information

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