My Boat Needs A Bung

Once again it's been way to long, so much has happened that I don't even know where to start.  An MRI result I wasn't expecting is probably a good place to begin.  Growth!  The word no one with a brain tumour ever wants to hear.  "Your tumour has started to grow" were the words I heard from my annual MRI.  Sadly there's no room for my tumour to grow in my head, it's in a tight little spot in there already.  Honestly, is there room in anyone's head for a foreign invader?  I remember staring blankly at my radiation oncologist thinking all this time he was the guy I had in my back pocket, the just in case guy, the guy who followed me after surgery but I would never need because I'm only 45. Now this guy is my best friend, my new fixer of all things, the guy holding the tablet with my glowing brain tumour shinning brightly like a star.

Radiation was something I was well aware that could be in my future I just didn't think it would be a mere 5 years after surgery.  We have conversation about making the mask, starting the treatments, how many there would be, ohh ONLY 25!!! Dear lord!!  "The team" got together and decided that the remainder of my tumour was still not a candidate for additional surgery so radiation it is.  I said to TJay I'm not sure what freaked me out more, having to have radiation or a group of health care professionals gathered around a table looking inside my head via their tablets.  I felt kind of left out of the party even though I was the star of the show.

So I put my big girl panties on, had my mask made and showed up for my first treatment in bright red Tom shoes.  Because if I have to start a hellish journey I'm doing it in style.  My first treatment I felt a little drunk after but I made it through.  Having your head bolted in a mask to a table is truly not my idea of anything that resembles fun but I did it and we left.  Day 2, lets get on with it, day 3, this kinda sucks a bit, day 4, I feel kinda of crappy and what are those weird lights I see during treatment and what is that smell?  Day 5 I'm in tears I'm so sick.  The thought of my head being attached to that tables and possibly throwing up is too much to handle.  They won't start my treatment until I see the Doctor.  Did you know they have great drugs that instantly take away nausea?  And from that day forward I take Omeprazole, Dexamethasone and Ondansetron.  I make it to to day 25, in which they say ok see you in 6 months for your 1st post treatment MRI. Don't expect any shrinkage, in fact don't really expect that at all, we are simply hoping it stops the growth.

I'm now back to MRI's every six month.  My second one after treatment will will August 22, 33 days from now but who's counting!  I'm going to assume this one is important as it's been a year since treatment ended.  I pray it's still stable but my gut tells me something is up. Sometimes my gut and my fear/anxiety get confused but I think hey! Prepare for the worse then if it's good news I can relax. I come across as having it all together, a pretty stable brain tumour patient  but really I'm a barely functioning nervous wreck who seems to be the one who holds everyone together when I'm the one who is falling apart.  But you see I can't fall apart, if the person in the sinking ship panics, all those who are floating will simply loose it.  So I continue to bail out my boat.

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

What You Say Can and Will.....

"Mom are you ok?" is how I was woken up this morning.  Jolting up I respond with yes as I try and look at the time, alarm blaring, 7:10!  Oh my, I jump out of bed and rush to make two lunches in two minutes.  Now I'll be honest, my kids are certainly old enough to make lunches themselves, I know this.  However, Peg, my foster mom, made our lunches right up until the day we graduated from high school, and it is one of my fondest memories.  Love is presented in food.  :)  So carrots, cucumbers and dip, granola bar, juice box and some graham crackers flew into a brown lunch bag and a quick kiss and they were off.

I stood there watching them walk up the drive way in a daze of utter confusion.  I am exhausted.  Seriously exhausted and little wonder with the past week.  Yesterday was my MRI and I don't think there is any scientific evidence that they or the dye they inject can make you tired, however every time I have one it takes me days to recover.  I'm sure it's stress and anxiety, either way it's real and overpowering.

I've had a couple of MRI's, 5 or 6 I think, which isn't a whole lot but in less then two years it's enough.  I don't like them at all and the loud banging and clunking caused a flurry of Trigeminal Neuralgia activity.  As tears rolled down my cheek unable to hold my face for comfort in my confined tube, I lay there, counting.  It's what gets me through the ordeal, "ok Kelly this one is for 2 minutes" the voice echoes from inside their protective glass, and my counting starts.  120, 119, 118, praying that each time I get to zero the noise will stop, briefly allowing me to regroup before the voice echoes once again.  The entire time I'm picturing my tumour remaining the same, some how thinking if I imagine it, that is what will appear on the MRI screen.

As the machine slides me out, the cage and padding are removed from around my head, the MRI tech says the following "That wasn't so bad was it" my instant reaction is go into my trigeminal neuralgia ordeal, but instead I said something like,  it's not my favorite thing.  Which in turn he replies with "Well there are worse things they can do to you in here"  OKAY...where should I start with this.  I have no words for him as I stare at him blankly.  He then says are you heading back to work now, I reply with a confused answer of umm no I'm not back to work yet, and he says well...enjoy your day off.  Perhaps it was the magnets that were just whipping back and forth across my brain but I am without words.  As I put my earrings back in, my glasses back on I turn with my teary eyes and walk out the door.  Confused as to what I heard,  am I just over sensitive due to stress.  I'm sure they know I have a brain tumour, chances are good that pops up as a bright white blob on their screen.  Lets just say by chance they don't see my brain sporting its glorious glowing mass, the ordering Doctor is a radiation oncologist.  Yes the MRI was that bad for me, today.  I do know there are worse things they can do to you in a hospital, believe me I am well aware of that one and I consider myself one of the lucky ones.  You do not get a day off when recovering from brain surgery,  I don't get a day off from having a brain tumour.

So what am I upset about 24 hours later?  Words!!  We can choose to listen with them or to ignore, use them to hurt or to help, they can be kind or harsh.  Words are used to gain knowledge, for power and for the greatest debates. Whatever you do with your words you have to own them.  Sometimes we don't even realize what we have said.  I know I can look back on a few instances and think "what on earth was I thinking" or "I can't believe I just said that"  There are moment I wish I could do over, people I wish I had the chance to talk to again.  I just ask that you please, use them wisely.  If I had the chance to do yesterday over I might have responded with the fact that it was a rough experience due to my trigeminal neuralgia, I'm sure the "there are worst things" comment would have never been spoken.  The medical environment has a job to do, find, fix and follow up, these "F" words ring true for everyone from the top surgeon in the country to cleaning staff.  Neither one nor the people in-between can work without one another.  Compassionate words is all that anyone trying to navigate their way through the medical world can hope for.  What you say can and will have an impact on someone today.

When Mircowaves are Clean

I'm not much of a house keeper, clean yes, tidy, not so much.  I should, like others, have a routine, Monday laundry, Tuesday bathroom, Wednesday vacuum, you get the idea.  But I don't.  Life is just to short to live in perfect houses.  I do however, clean like a crazy women when I'm upset, it's therapeutic, calming in a way with a end result you can be proud of.  It's also something I have control over, how shinny things look are a direct result of my scrubbing.  So for all the people who have asked and the family that have called because there hasn't been a blog post lately, it's because I've been cleaning.

Yes it's been a while, last update was the eye Dr.  I've decided against the blurred lines and two pairs of glasses it will be. One for everyday, totally funky fun glasses (kids of course because I have a little pea head) and the second set will be the pair I'm wearing now just with the reading prescription put in.  The decision was made that the prism will be etched right into the lens as it was determined that it is still needed.  I have been looking through a piece of plastic now since last March, it will be nice to say good bye to that.  I'm sad that it's a bit more permanent now.  I am however, still hopeful that nerve repair is still happening and maybe, just maybe the prism will be just a memory someday.

So other then cleaning what have I been up to?  Well a trip to Nephrology happened the other day.  Low blood pressure and kidneys don't get along.  Kind of seems like the least of my worries at the moment to be honest.  I have my next appointment coming up with my radiation Doc in June which  means that May will have an MRI in it.  May is also the Spring Sprint in support of the Brain Tumour Foundation of Canada.  I'll be there proudly wearing my blue shirt.  I've also spent a great deal of time in silence, tall order for a big mouth like me.  I have to say that this experience is one that I can't figure out.  One thing that I have figured out is when people ask how I'm doing and I try and explain that my brain just doesn't react like it use to, people are quick to respond with "oh yes I know what you mean, that's not the brain tumour, that's old age"  I swear if I hear that one more time I will loose my marbles.  It's NOT the same.  Someone didn't rummage around your brain and suck out part of a tumour.  You are not walking around with an invader in your head and if you are then you are saying AMEN sister cause you DO know exactly what I'm talking about.  It's like your brain is in slow mode now.  Thoughts come slower, words are lost, and the effort it takes to concentrate on something is so exhausting that sometimes it's just not worth doing.  Think of your brain as old fashion grey filing cabinets.  All lined up, organized by year, by events, by memories and by gained knowledge.  Brain surgeons take those filing cabinets and dumb them, hundred and hundred of files all mixed up.  No longer by year, no longer by event, no longer by knowledge.  It's all in there, I can see it, and I've spent 14 months slowly putting each piece of paper back in it's folder to find it's way back into it's respective filing cabinet.  This is work my friends, the hardest work I have ever done and when I struggle for the right word,  it is so frustrating I could cry.  In fact I did cry this weekend.   Remember my attempt at the simple game of BINGO and how my brain just couldn't handle the speed of the game.  Well, I tried to play a game this weekend with friends.  Simple enough concept, everyone has 7 cards, everyone takes turns having a black card that they read aloud.  Those playing gives the best possible answer from their 7 cards to the person holding the black card.  If he/she picks your answer, you win the black card.  Very easy concept right?  The regular brain hears the question and picks from their answers.  My brain heard the question and as I tried to read my answer cards I could only get through one or two and would forget the question.  As I'm asking to have to question repeated, everyone else has their answers placed on the table and I'm no where close to having mine read let alone a decision made.  After one of the players not once but twice just couldn't understand why I wasn't getting it and how many times did she have to read the question, I was ready to go home.  Once again, it was evident to me that my brain literally shuts down when it is over tasked.  I didn't sleep that night, spent the next morning crying and the entire day in a dreadful mood.  It was like I was in mourning, which I am.  I'm mourning the brain I had, I miss the person I was, I'm frustrated that my life is not the same, and I'm angry.

I'm glad this happened however, as it brought to me to a major realization.  I have been in mourning all this time.  I am not the Kelly I was, my brain does not work the way is use to and I have to be ok with that.  I have to stop being angry every time someone says "oh you are just getting old" or "I understand."  I know they have no clue, so why do I feel the need to tell them they are wrong, all they are trying to do is sympathize with me.

I have tried so hard to be on the positive side of the reality of having to live with a brain tumour for the rest of my life.  However, living with the unknown and the fear of the next MRI results is scary.  It can bring even the most positive person to a breaking point.  I needed to mourn, I needed to get angry and and I defiantly needed to cry.  Why?  So I could have a clean microwave, come look, seriously it sparkles.

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.

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.

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!!!!

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.

Picking Up The Puzzle Pieces

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

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

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

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

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

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

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.

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

I'm going tubing!!!

Hooray!!!! The 14 day count down has begun, yes it's time for the tube once again.  My favorite thing in the whole world, NOT!!!  Sadly it's not tubing down the Gaspereau River in Nova Scotia, it's the MRI tube.  I hate that thing, it's noisy and cramped and every single germaphobe's nightmare, but I will get in.  You know why, because I'm actually excited for the results.  It will be like looking at before and after shots of  plastic surgery.  It's lipo for the brain.  I can't wait to see just how much of Bubblegum is left and did some of Honeycomb slide out too?  I'm going armed with a camera and high hopes that it looks a lot different then the first one I saw.  That image sent me into a tail spin of hearing nothing but mumbles after viewing it, a complete disbelief that "thing" could be in MY head.  Thank God for TJay for asking all the questions, and remembering all my Dr's answers or it would have been a complete waste of time.  Speaking of "time" once again I'm counting it down and I don't care, counting it down has actually become a bit of a game for me...changing my way of thinking...one appointment at a time!!!  :)