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

I'm Done With Bad Days!!

I've added another member to my team.  This member I think might make her way to Captain in no time at all.  She is a Naturopath Doctor with a gentle soul and is willing to take me on as a patient.  In fact she listened to me for 1.5 hours.  Yup, I'll repeat that, a Doctor who was actually interested in what I had to say about MY body for an hour and a half.  Did I have to pay out of pocket, you betcha, but I got what I paid for and then some.   The appointment itself was difficult as it's the first time I attended a medical appointment alone.  Normally I have T Jay there to add the missing pieces.  Instead I was jumping around, mixing up dates and time lines but she was very understanding.  I was exhausted, my brain taxed beyond it's limits but I pushed through it, as after all, I should be the expert on my own body.  I was beaming the rest of Wednesday, someone actually listened to me, I couldn't wait to tell T Jay all about it.  As I was cutting celery to put in our salad for dinner that familiar feeling of the burning neck, and then the dancing aura that is ohh so familiar with what I now call "pre brain surgery" migraines.  Zack you are now on making salad dressing duty, Haley take care of the rice, I have to close my eyes.

I should have known as that afternoon my Trigeminal Neuralgia was acting up.  I knew that it was information overload.  I explained to her my filing cabinet theory on how brain surgery just dumps your well organized life and memories out all over your skull floor and how hard I've worked to pain stakenly refile each little piece of paper.  (It was actually very evident to me that my files are still very mixed up when I had to do it alone, T Jay has become an excellent secretary)

I see my new Neurologist in two weeks and hopefully he is as open to listening as the latest member was.  Funny thing about traditional medicine, it's never really clear on who's appointment it is.  My appointment explaining my issues and asking for help or their appointment telling you how it really is.  It's a weird line there I'm learning.  Either way, each day is a new one in this journey of healing.  There will be good days and then there will be great days.

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

Migraine Madness

Struck down again with yet another migraine.  I remember when my migraines told me they were on their way.  A burning sensation up the back on my neck, then aura, then bam....that headache that only a migraine sufferer would understand.  Lately, they have taken on "the sneak attack" approach.  I had two migraines that caused partial loss of vision prior to my diagnoses, scared me to say the least. I had a break from them after my surgery.  I guess my body took pity on me knowing I was dealing with recovery.

My last two migraine, both very different had a common theme.  Weird visual disturbances.  Yesterday in the middle of a conversation with my best friend, I couldn't finish my sentence.  I tried but I couldn't, my mind was trying to process the sudden visual field I was seeing.  The fish bowl affect.  We have all seen it in pictures, camera settings etc.  It's like looking through thick glass.  Then all I could see when I closed my eyes was a half moon made of crystals, so bright then blue and red.  Tears are flowing at this point as I am in panic mode.  Once again, thank God for T Jay calming me down to the point that the moon disappeared, leaving me with a wicked pressure in my head.  To bed I went.

Today, I'm tired, confused and a tad bit frustrated.  I would do anything to have my life back before my tumour took up residence.  I would do anything to have my tumour completely removed.  I wonder why I have to live with a brain tumour.  I sometimes wonder what fate has in store for me.  I don't know the answer to that.  What I do know is I have a big presence ( a polite way of saying I have a big mouth)  I would scream from the roof top that funding is needed, research is crucial and support is necessary.  And that's why I walk in the Spring Sprint to support the Brain Tumour Foundation of Canada.  This year we walk on Saturday May 10th at the Canada Games Centre in Clayton Park.   I would love to have you walk with us.  My team is called Recovery Roadsters, just click on the name, it will take you right to my fundraising page.  It really is the only thing that makes me feel like I have purpose right now.  Other then of course my amazing family.  I want the world to know that there are thousands of people affected by this illness, it's real, it's not pretty and it's underfunded.  I can help change that by telling my story, giving you a glimpse of what it's like to live with a brain tumour.

My head may be hurting but my mind is comforted by purpose.  Take a look at the following link, it has common signs and symptoms of a brain tumour.  

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.

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.          

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"

How Much Did Your Brain Tumour Cost, Mentally?

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

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

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

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

It's 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.

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.

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.

Put Your Hands Together...

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

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

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

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

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

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

MMEB

Pressure in my head is pretty intense.  Not really liking that so much, not liking the fact that no one seems overly concerned about it.  Umm hellllo people the inside of my head feels like it is trying to claw it's way out and all I hear is, it could be "scar tissue", or "mmmhmmm", and my all time favorite "you are still healing"

Lets see, physio and Dr appointment this week has me upping my meds, no difference yet, still getting the pains in my face, it's all getting old real fast again.  So to make myself feel better I baked some muffins.  Well actually, the truth is, I'm so tired of making school lunches that I thought if I bake some muffins it's an easy toss into the bag.  Kids loved them, me?  Meh, they were ok.  The heat from the oven was however, fantastic.  It's been so cold and rainy here in Nova Scotia that suddenly I have the urge to make Winter foods like stews and quiches.  We've hit the middle of June and the wood stove is going.  I know, it's crazy but it's true.

Since it's been so rainy there has been very little walking weather, which makes my only outings in the car with T Jay.  I don't like driving with anyone (it's the control freak in me)  I like to drive, I don't trust anyone else to drive and well...... only I know how to drive my 5 speed correctly.  T Jay is well aware of my car freak outs and is very happy when I have to answer a txt message in the passenger seat.  I'm not paying attention to the road, or his driving.  I'm normally in a state of panic, grabbing the "holy crap" handle, hanging onto the door and he will certainly hear more then once during an outing.."OMG T Jay watch the road"  "He has the right of way" or  "you are going to give me a heart attack"  Which are all funny things to say to a Paramedic who actually spends his days driving around the city from one accident call to another.  At least when he gives me the heart attack he can save me too.  This "unable to drive thing" is very much having an effect on me.  Someone, being the stars of the show Bubblegum and Honeycomb have taken away my ability right now and until my perspective comes back to a point where I don't think that every car is only 2 inches away from us, there will be no driving.  Maybe I've lost my confidence, maybe it will all go away with my eye improvement.  Maybe it won't.  So while I'm not driving and am stuck in the house, I will continue to search Pinterest for the ultimate muffin batter, because we all know Muffins Make Everything Better.

The Shocking Truth

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

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

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

Playing Catch-up with Ketchup

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

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

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

Have Tumour...Will Travel

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

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

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

It's a miracle

What a day!!!  As I type this I do so without glasses, and since I don't know how long my amazing vision will last, this will be a quick post.

Every morning when I wake up and open my eyes there are two dressers, two lights, two huge messes on my bedroom floor.  I only have one dresser, one light and I'm only half a slob, what I do have is double vision.  As I've written in past posts, my double vision was first corrected by me tilting my head to the left to compensate for the right eye's issues.  Then trips to the eye clinic had me sporting new glasses with prisms and my life became manageable.

Yesterday my "brain itch" (any of you who had brain surgery can relate to this highly annoying feeling of ants crawling inside your head) was horrific.  I said to T Jay last night that if I loose my mind it will be because of brain itch.....AHHHH I can't stand it.  I thought maybe I over did it, raking the dead plant material from my front flower bed yesterday.

This morning started like all other mornings, the alarm goes off I open my eyes and my day begins.  I get the kids up for school, make their breakfast, pack their lunch and ship the first one out the door.  Since I've been home recovering from brain surgery I've watched them get to and on the bus safely every morning.  This morning was no different except it's nice and sunny here today.  I rubbed my eyes as the sun was too strong on them and I scream to my son, who I startled the heck out of.  "Is my head straight...look mom's not wearing any glasses and there is only one of you!!"  He replies with a big smile and a yes mom your head is straight.  I am beyond excited, off to the mirror I go, yes my head IS straight.  WOW, I don't understand and I don't know why I can see today without my prisms but I will take every minute of it (so far three hours)  I'm sure it has everything to do with healing and swelling going down and lots of other medical explanations but I like the idea of "It's a Miracle" way better.

Merry Christmas

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

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

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

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

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

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

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