Living Happily Ever After In A Bad Dream

A question I get asked a lot is 'how do you remain so positive', or 'you are always so positive'.  Well, I'm a firm believer that negative energy is just as detrimental to your health as any crisis diagnosis.  Anyone in the brain tumour community lives MRI to MRI.  In between those MRI's we live our lives.  In general the main stream population doesn't understand brain tumours . Why?  Because it is always perceived as the worse thing that can possible happen to you.  Think about TV shows and movies, I'll set the scene for you.  A patient laying in a hospital bed, they have come in because they fell down, or blacked out or have the worst headache ever.  The room has several Doctors with their clip boards, (or i pads) and they announce "I'm sorry to have to tell you this, but you have a brain tumour"  The camera zooms in on the patient who is in utter shock. It's the incredible dramatic affect to any drama TV show or movie.  (now that I've told you this you will notice it all the time). Every time I watch this on TV I relive my day,  every, single, time!  You see every single day 27 Canadians have that exact moment, they are told they have a brain tumour.

For those who know me will probably agree with the following description, I'm assertive and head strong.  These have been great qualities that have got me through some pretty tough situations in my life. I was known as a brat as a child, but we are talking the early 70's, kids were seen not heard back then...except for me.  This boisterous voice of mine has led me down the path of awareness, determined to speak loudly about brain tumours

and doing my part for 7 years.  Recently, I've been contacted by several people, all looking for advice, help, anything for their friend or family member who has been recently diagnosed with a brain tumour.  T Jay and I were talking last night how staggering this number has been over the past few months.

With all of them I share The Brain Tumour Foundation's website (braintumour.ca ).  I share my phone number, I share my blog, I share our Facebook support group.  I don't have all the answers, I am not the expert, but I had that dreadful day of diagnosis, I had surgery, I had radiation and I continue to walk around with an inoperable brain tumour. It is truly like a bad dream but every single day I get up, I carry on, I conquer whatever life throws at me, why?  Because life is so worth living, knowledge is so worth sharing, and finding your happiness is everything. Once you have a brain tumour diagnosis it is with your for life, completely evicted or not.  You are now part of the statistics that are so critical for funding and research,  you are now one of us, doing your best to live happily ever after in a bad dream.

Golden Treasures Come In Blue

I've spent the last 10 months being an executor.  Not an easy task to deal with someone's assets and their belongings.  You find things they held onto so dearly from the past and all you can do is question the purpose of that item.  Eventually, you figure things out, uncover things, finalize things and make the arrangements for their final resting place, following their Last Will and Testament to the best of your ability.  Now the process starts where I finally get to mourn my Mother.  My relationship with my Mother was not like the relationships I saw my friends have with their Mothers.  It was bumpy, it was difficult.  It's hard to always be the parent when you are supposed to be the child.  However, that was our relationship, the roles reversed for as long as I can remember.  I swore that my children would always have a Mother, not be the Mother.  When I became sick I saw my kids take on a more active role in my care.  I tell my kids I'm good when mostly I'm not.  I want them to be the kids who don't have to worry about their Mother.

When cleaning out my Mother's small apartment I came across one knitted slipper.  My Mother loved to knit.  When I was a child all my barbie clothes were knitted, my socks and sweaters, EVERYTHING!!  I hated it when I was little, now I cherish my knitted blankets.  So finding this one knitted slipper was golden.  Inside the slipper was a small ball of matching yarn.  I took the ball out and set it aside, I slipped the lone slipper on my foot and just like the magic in Cinderella, it fit perfectly.  For those who know me will understand, my feet are tiny, a child's 2.5.  So for this slipper to fit was amazing.  I'm going to say it was made for me because that just makes me feel better.  I never questioned for one second what to do with this treasure amongst the piles and piles of Church donations.  It was coming home with me to NS and I was giving it to the person God was telling me to at that very moment, my dear friend Heather Star.  Heather is an incredible friend, she has been with me through all my difficult times, happy times and scary times.  She took the day off of work the day I had brain surgery so she could see me through it with the power of prayer.  She sat with TJay for the gruelling 10 hours at the hospital, waiting for me to wake up.  I often wonder what TJay and Heather talked about for that many hours.  She's celebrated my children's achievements like they were her own.  We've cried together and also laughed until we cried!  If anyone could knit the matching slipper to my mom's half done project it was her.

Heather came to visit me not long after I returned from my Mother's passing in Quebec.  I handed her the slipper and asked if she could make this into a pair.  She left with the yarn and the one slipper, knowing she had been entrusted with an important job.

Several months had past and I had pretty much forgotten about this project, my head too full of taxes and payments and and and....anyone who has been an executor understands the amount of work that is involved.  Then one day Heather shows up with a pair of slippers.  One as beautiful as the other.  She explained that my mom had taught her something.  She had never knitted the stitch around the opening of the slipper the way my mom did, so she had to learn it.  Amazing how someone can teach even after they are gone.  As I inspected the slippers Heather showed me something so very special about each one.  She said you will always know which one your mother made as the one I knitted I sewed a small blue star inside.  Two identical slippers made by two different people with two very different meanings to me, both equally a treasure.

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.

Tall Latte With Room For Dairy

Seriously, what the Hell?  I've been spinning out of control for months and I can't seem to put the breaks on.  My body on the other hand has been screaming at me since September, today's the day I listen.  Not much choice really, it's all I can do to get showered.  (which I still haven't done yet today and totally skipped that task yesterday.)  All I've heard for days now is how tired I look.  I don't recognize the person in the mirror, she's tired and old.  It's certainly not who I think of when I visualize myself.

Winter:  I hunkered down in my world of "why" and "I'm going to fix this" with my giant plan of trying to help myself.  Maybe I'll see if I can take a class, get my brain working, get some self worth. I got permission from my Doc to take something small if I want, nothing that is going to stress my mind.  The process of just looking into this is exhausting, I can't do this and I give up.

Spring:  Im pushing myself to accomplish more.  In my world that's sweeping and washing the floor in one day.  I push myself to try not to nap, perhaps it's a habit I've gotten into.  This proves to be one of the stupidest self experiments I've ever tried and I suffer.  Terrible headaches, confusion and exhaustion take over.  I'm truly a dumb ass!!  I spend the spring and summer hearing "Mom, you already said that" or "mom you said car not ketchup, you mean get the ketchup"  I look at them as if they think I'm stupid. I did not say get the car from the fridge.  Then everyone in the house agrees, yup mom you said car, get the car from he fridge.  This starts to happen several times a day, with any weird combination of words.
Im now not interested in seeing anyone because I feel like I've gone from an intelligent individual to a dummy.  There's a safety in screwing up in my own home, so I don't go out and when I do I don't talk.

Summer:  I hate summer, the heat takes my head and turns it into a giant throbbing mess.  My kids are so overbooked with work I can't wait for them to go back to school to get a break.  However, I can't lie, the AC in the car is a welcome relief.  No word of a lie, I got in my parked car and sat there with the AC on just to cool my overheated body down.  I swear I lost my internal thermometer, and if one more person tells me that's menopause I'm going to punch someone.


Fall:  A visit with an old friend.  Amazing what that does for the soul.  I spend that time asking questions that are carefully planned in my head so that I don't have to talk much.  I get to listen, which I loved, but won't lie it was planned.  I spend the next day sleeping a lot.  T Jay gets frustrated with me.  Just be Kelly with a brain tumour, stop trying to be someone your not.
A loss of vision again but very different from the other two times has me freaked out.  The two times prior to this were before I was diagnosed with my brain tumour, before I had surgery.  I trip to the eye doctor shows my eye has gotten worse again.  sigh!!
A four hour test at the hospital totally unrelated to to my eye proves to me that the amount of people, the bright florescent lighting and the complete chaos of that place is WAY to much for me to handle.  I sleep the next day.
A trip the other day to Starbucks with T Jay and my daughter proves that my comfort level around my family to be  real and I let me brain repetitive behaviour guard down.  Normally when I say a word wrong or go someplace like this to order something, I repeat the words in my head about 10 times over and over again so they come out as they should.  This day I said to the gentleman in Starbucks, I know exactly what I want, a tall latte, room for dairy.  He stares at me blankly, ummm a latte is made with milk. I stare just as blankly back at him, I want a tall pike, room for dairy.  My daughter, "mom you said latte", the Starbucks guy, "yes you said latte" and I in my moment of feeling like an idiot once again, said ohh well I would like a pike please, a tall pike room for dairy.  As I pour my cream and sugar in my coffee I find myself saying tall pike room for dairy, tall pike room for dairy, tall pike room for dairy.

The Straw That Broke The Swarovski Crystals Back

Nope I'm not dead!  My lack of posting on my blog has been intentional.  Sometimes in the healing process things take a turn internally.  Things I can't share, things I don't want to share, things that are hard on the head!

My appointments with all the wonderful doctors have continued as have my MRI's, the appointments, status quo, my MRI's no growth.  Who could ask for more then that right?  Well, for the past few months, I'm the one asking for more then that.  An internal battle between the Kelly that was and the Kelly that is.  I honestly don't like the new Kelly, I can't get used to her, I hate her internal struggle to find the balance that allows her to function.  Would I say that I'm slightly depressed?  Yes.  I honestly see how people who struggle with a daily battle end their life.   Now before you run off and tell my mom, or even worse TJay,  I'm not suicidal, I love myself as a human being, as a mom, as a girlfriend and as a friend.  I'm simply saying that I never could understand the ending of ones life. How selfish, is what I thought, how could you do that to your loved ones you leave behind.  But I get it, the chronic pain, the constant pretending so others don't feel bad is exhausting and there are days I just don't want to play "the game."  I'm tired of explaining why I'm not working to those "who just can't help but think it's time by their calculations"

I had an interesting experience over the holidays.  I went to Dartmouth crossing.  I don't go to Dartmouth crossing by myself, ever!  The traffic, the bridge, the confusion, all extremely difficult on my brain, I can't process, I panic and I shut down.  My daughter however, wanted to go see a football game, so I took her, which allowed me to shop at a store that is not located in Halifax for a Christmas present for my son.  I apologized to the gentleman for coming in just before closing explaining that I didn't get the opportunity to come over here very much.  Hoping he would help me find the items I was looking for as I was having a hard time concentrating, he tore me to pieces instead.  "It's not that far to come here, I don't know why people say that all the time, why can't you cross the bridge"  This went on and on, finally with a quivering lip I said "I have a brain tumour, I don't normally drive this far as it's to difficult"  his response...."Oh great, now you made me feel like crap".....I purchased the shirts, went to my car and sobbed.  I think about that day a lot.  I often wonder who felt more like crap, him or me.

We have become a society that feels we know what's best for everyone else!  Why?  Why do we do that?  We are less tolerable, less kind, less understanding.  It's been three years since my surgery.  Three years I have not worked, three years I have missed my co-workers, three years of the pride that goes along with saying who I am.  Because believe me, you are no one unless you can say where you work.  Your job, your title, your sole existence on this earth is based upon what you do for a living.  And even when you get the courage to say you are not working due to a brain tumour, you still get picked apart, symptom by symptom.  Most of my symptoms can be explained, the trigeminal neuralgia, the diploma, the exhaustion, but one is the right hand dropsy's.  I tell the Doctors, they do their tests and no one says why.  I drop cups, plates, keys, anything really, for no reason.  I could do this several times a day or not for weeks.  It's minor to the many other deficit I currently have,  except for today.  Today, putting away Christmas dishes I came across a gift from T Jay, a swarovski crystal snow flake.  I've wanted it hung in my kitchen window for three years now.  Today, I attached a piece of fishing line and as I reached to hang it on the nail in the centre of my picture window, it crashed to the floor, it was in my hand, then it wasn't.  As I looked at the two perfect pieces of snowflake I fell to my knees and wept, sobbed really.  Academy award winning guttural cry!  I broke something so precious to me because my hand decided at that moment not to work.  I broke something so precious to me because the Kelly that "was" and the Kelly that "is" still don't agree on what I can and cannot do.

The crystal is hanging in my window now, glued back together.  The sun shines through it creating beautiful rainbows on my floor.  It's broken but you'd never know.   Just like someone I know, ohh the irony!!

Halifax Spring Sprint 2015: You Make Me Smile

2 days until we walk in support of the Brain Tumour Foundation of Canada.  This is my third year and how lucky am I to say that.  The day is always filled with amazing people with amazing stories.  It's also a moment to reflect and celebrate the lives of those who lost their battle to the angry invader in their head.  

Brain tumours,  they come in all shapes and sizes, classifications and grades, they don't care if you are young or old, your race or your gender.  They just show up, leaving you with no choice but to deal with the hundreds of different issues it can cause.  

This is why we walk, why we come together as no two brain tumour survivor are alike.  Research will help this, research can cure, research change the future for the newly diagnosed....research cost money.


So here is my link to do my part in helping future brain tumour patients.... so they too can smile at their efforts to make a difference. 



Halifax Spring Sprint 2015: Ms. Kelly Marshall - Brain Tumour Foundation of Canada

Time For Tea

I'm not who I was, it's a plain as can be

Sadly you don't know that,  as we never have tea

The women you knew who could fix anything

Is broken inside and it's not worth a thing

You see those who believe that all is ok

Don't live with a brain tumour every single day

I'm not as much fun, that I do know

I lead a different life with children in tow

No explanation or understanding is needed

My garden of friends has certainly been weeded

My door is open if you want to meet me

I'm not who I was, but I still like tea

How My Brain Tumour Stole My Heart And Gave Me Time

Its been 833 days since I had surgery.  833 days of "rebranding" myself.  One might think that rebranding is for industry and products, and this is true.  However, life events can force you to sink to your darkest level or rise above and rebrand yourself.  I've done both, and without the lows I would have never seen the high.  Rebranding comes at a cost, not financial (unless you include therapy) but a soul searching adventure that can literally cost you your sanity.  As I became more and more frustrated with what other complained about, I became bitter.  It's hard not to tell people to get over themselves sometimes.   We all do it however, we whine because our life is not as perfect as what we perceive our neighbours to be.   When we as humans realize that life is not a competition on who has the bigger house, car, or even brain tumour...life suddenly gets easier.

So other then the medication side affects, a long list of daily medical issues, blah blah blah, what has my brain tumour given me?  It was time to find the positives in this.  So I spent my Winter on a roller coaster of discovery.  I started thinking of the good that has come from my brain tumour and I would like to share them with you.

1.   I have time to research, and research I do.  I didn't know how much I liked to read different studies, medical findings and facts.  Not just on brain tumours, but on the human body itself.  We are amazing creatures, we need to value that.

2.  I have time to cook, I hate cooking, but I now have the time if I choose to do it.

3.  All my actions are choices,  seems simply but it's far more profound then it sounds.

4.  I have time to be me,  I thought I knew me but I was very wrong.  I've started forgiving the me I was and enjoying the me I found.

5.  The biggest and most amazing thing my brain tumour has given me is love.  I have time to parent, to enjoy my children's milestones and help comfort and advise them in their hardships.  I am a full time parent right now and I love it, lucky me!

6.  Time.  Yup that word I dreaded and now I cherish with all my heart.  There is no one out there who doesn't wish they had just a little more time with someone they love.

So brain tumour in my head, thanks for giving me the time to appreciate the "loves" in my life.  We're stuck with one another so it's probably for the best that we get along.

Curry On The Brain

Today is a big day, I get to start Meriva-SR curcumin  I'm quite excited about this as I've been working with my Naturopathic Doctor (ND) to get my body in a healthy state internally to start this journey.

Curcumin is a major component in the spice turmeric, which gives curry the beautiful yellow/orange colour.   While beautiful to look at, it also has amazing health benefits.  The articles on the Internet are staggering, study after study of the cancer fighting and inflammatory fighting properties of this wonder spice.

My personal research began about a year ago when it started to sink in that my tumour was not going to just "go away" even if I opted for radiation.  We live in a world where we think modern medicine can fix what is wrong with us, or at least I did.  Have surgery, remove tumour, "get on with it".  Honestly, as crazy as that sounds, that's what I thought.  Well, that all came to a screeching halt, and after I got over my own pity party I did what I do best.  I read, I researched, and I dug deep to find something that would work for me.

So this is what I found:

• Although curry tastes yummy and I do eat my fair share, you would need to eat A LOT of it to obtain the health benefits I was looking for.
• Curcumin has a major anti-inflammatory response.  
• Curcumin has antioxidant properties.
• Curcumin crosses the blood brain barrier- do you know how hard that is to do?   The body is well designed to protect the command centre of the body.  Since my tumour is in my brain this is good news.
• Curcumin has been found effective in helping to treat some forms of cancer.

There are hundreds of articles, but a common theme in all of them is that this spice is gaining recognition.  I am realistic of course that this isn't going to be one of those hallelujah moments of "I'm cured."  However, I am optimistic that with the help of my ND a better state of health can be obtained.  So with each little pill I swallow I will envision an army of yellow soldiers marching their way to my brain, seeking out that tumour and yelling CHARGE!!

photo credits:   Rainforest Herbs

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

Out With The Old, In With The...umm well...Old Again

My two year anniversary of having a team of Docs rummage around in my head is right around the corner.  There are days I think, wow has it really been that long and then days when I think, I've only come THIS far in two years.  ugh.  As I've said before the switch up of meds has been a good thing for me but I've lost lots and lots of hair. (minor I know but still a freak out in the shower).  I grew my hair out after brain surgery, hiding the scar and the hole in my head, my way of feeling somewhat normal.  Well my friends, yesterday after looking at my "see through" hair one last time, I said screw it and cut it all off.  What better way to hide your very thin patches of hair is with a very messy funky hair style.
I've always had short hair in my adult life, you see I have this tiny little pea head that doesn't do long hair very well.  My days of hiding behind long locks are over, free the messy me.   I don't care if you see my scar that runs down my neck, heck I don't even care if you see the large indent in my head.  What better way to bring in 2015,  everything that's old is new again.  Welcome back short hair, ohh how I missed you.

All 'Bout The Stable

I checked out!!  I'm a bad blog writer, very bad, but I had to.  I wasn't depressed or angry,  just tired of having a brain tumour.  Which is kind of funny since it's all mine and I get to keep it.  Some days I just want to take my drugs and play pretend.  I'm going to give myself that.

Lots has happened since I last posted but nothing earth shattering.  I saw a new neurologist which will not be replacing my current one.  However, he did ask a valid point, "who's your neurosurgeon"  to which I replied, I don't have one, she moved the the USA.  I guess for the last two years, even though I'm not a candidate for surgery anymore, (due to crappy/dangerous tumour location) I'm supposed to have one in my back pocket.  You know for if and when it does decide to grow.  Huh!!  I guess that's in the works and since I didn't have a neurologist for a year and a half I'm not surprised the ball was dropped on this one too.

Saw my radiation oncologist (another back pocket Doc for the if and when) he gave me my MRI results and I'm happy to report that my brain intruder hasn't grown and is just hanging out.   Good news, and radiation is still there when we need it.  For right now we will all just breathe.  In May I get to hop in the MRI tube again and wait the agonizing days for the results, living life 6 months at a time is for sure giving me grey hair, least of my worries I know.

So today is my day to rest with the reassurance that my brain tumour is quiet, this really only last about a month and then I get all freaked out again.  Little wonder eh?

There are days I find the humour in my life.  There are days when I am constantly calculating time and days that are just numb.  Today, is a humour day.  I created this picture that makes me laugh every time I look at it.

Tumours Have Bad Days Too!

We all do it, I've done it countless times.  The awkward weirdness that comes with not knowing what to say to someone who is sick.  Maybe it's just the true shock of being so surprised that someone unwell can look that good.  I can't even begin to tell you how many times I said these words " Wow you look so good" to patients in the hospital.  It's like we are somehow paying them a compliment for what they are going through.  It's in our soul to be kind, nurturing and tender.  It's also part of life to say stupid things when we really don't know what else to say.

When I hear "Ya look good, so how are you feeling" it's like a two part statement that completely discredit how I might be feeling...because how do you say you feel shitty after someone says, "ya look good"  Well, I've started saying that.  I'm tired of trying to make other people feel better and ease their discomfort.  I don't wear a sign on me that says "hey I have a brain tumour"  There's no window in my head for you to see it (albeit they did leave a hole but thankfully they covered it up with skin)  Tumour are for the most part inside our body and anyone who is totting theirs around doesn't have an arrow pointing to the location of their intruder.

I had someone recently ask me "so is everything good now"  umm.... I responded with "no it will NEVER be good I have a brain tumour"  Not to mention all the effects that came along with brain surgery.  So I have to ask myself, what is the silver lining in all of this?  Everything we do in life, every event, every circumstance is to better us some how.  I truly believe that, so you have to understand that this is hard for me to wrap my head around some days.  Maybe its for me to just get over myself.  So I have a tumour, people are genuinely concerned, be thankful for that and shut up.

Ive never been good and keeping my mouth shut, so me and my awkward tumour will just keeping taking it day by day.  Forgive me if I bite your head off, it's the tumour that is having a bad day.

This "Time" Was Healing

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

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

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

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

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

It's The Natural Kind of Disapointment

Ok I realize it's been a while since I've posted anything.  I know when people start to send me Facebook messages or actually use the telephone to call, it's time to write.  I was very excited in my last post to be seeing a Neurologist and a Naturopath Dr, and that excitement is still there, things have just changed course.

My medications, my Neurologist has a theory about the meds I was on for two years and thinks it's best to take me off of them over a course of 6 weeks and put me on a new drug.  My body is not happy right now and has basically caused me to go into hiding. My vision is off, my balance is off, migraines have returned, my trigeminal neuralgia is back in it's original electrifying form.  I'm sleeping all the time and I swear my head has changed shape.  All this being said,  my well thought out natural approach to brain tumour eviction (turmeric) has been put on hold due to the med change.  We can't introduce too many things at one time.  I get that, and agree, it's just another waiting game.

So I haven't fallen off the face of the earth, I'm just trying to keep my feet planted and my head clear as I had no idea that changing medications could have that much affect on a person.  I'm truly trying to just keep it together.  At the end of the day, I still have a brain tumour, there are days when that statement is harder on the head then others.

Might Is Mighty Fine

Well I finally have a Neurologist, he seemed as shocked as we were that no one other then my Family Doctor was really taking care of me.  "Your neurosurgeon?" "Nope she left right after my surgery for the USA"  I said.  Then I think I made some sort of comment about being forgotten.  He asked all the questions he needed to know, about radiation, who's my radiation oncologist, chief complaints, meds etc.  Then did the typical neurological medical exam (which I think I passed but I never did get my "grade")  Lots of Q & A led us to a switch up in my medication.  There will be a slow decrease of the one I'm on and a increase in the new one.  There was a lot of talk about how my issues were vascular related, hence, my inability to do anything that forces blood to my head without it going to explode.  That pretty much covers anything from lifting a bag of groceries to crying.  I explained to him how hard it is to go from someone who went to the gym to a softy.  He said with a smile, "the great thing about this new medication, it might help with that."  he asked if we owned a tread mill and after hearing yes I was am to hop on and get a marker as to what I can do now before my head pops.  Then we can see if there is any improvement with the new meds.  I can feel my excitement starting to build, one drug to help with most of my brain tumour symptoms.  Ohhh it's a great day.  Back in three months in the plan of action and I leave the office feeling excited.  Someone on the traditional medicine side, who understands brains, how they work, how they don't work when you grow a brain tumour in there, is actually on my side.

T Jay being the voice of reason, as he always is, said don't get too excited, he said it might work.  And once again TJay is right (insert, muffled under my breath words here) :)  This is why I bring TJay along with me to all my medical appointments.  First of all, unless I recorded the entire visit I wouldn't remember anything the Doctor said by the time I got home.  It also allows us both to be involved in this very personal journey that at the end of the day affects us both.  Plus TJay can see my reactions to Doctors and knows if he is going to have to build me up or bring me back to reality with repeating sensitive words like "might."  We both agree however that "might" in this case is a very powerful word.  I have been living for 17 months post opp with my radiation oncologist using words like "I have no idea why you haven't recovered from surgery" to " we might be able to help some of your symptoms with simply changing up your meds"  I'll take it.  The reality is, the fight against the brain tumour is not going to change, however, if a simple med change "might" give me back some of my life, that's mighty fine to me.

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.

Buying Time

There is good news, great news and crappy news and It's taken me a bit to process it all.

I thought that an update was due.  Do you remember that old saying when we were kids 1, 2 skip a few, 99, 100?  Well this update will be very similar to that, several things have happened in-between all of this but it will be left unsaid, so the Cole's notes are as follows:

The good news:  The MRI showed no growth on the tumour.  Hooray!!!  So at the moment Honeycomb is just hanging out, he is still reeking havoc on my head and body, but he has not grown. I'll take that.

The great news:  radiation has been put on hold.  To be honest that scared me more then brain surgery, at least with brain surgery I was asleep.  Since the tumour is stable, we are going to wait to radiate.

The crappy news:  radiation is not quite what I imagined it to be.  My thought process was that they would radiate the tumour, it would shrink and poof it would disappear.  I would feel better and life would get back to normal.  Nope, that is not the case for me.  My tumour is in a crappy location, we already know this.  However, from what I understand, radiating Honeycomb is kind of a one shot deal.  We don't really want to radiate that part of the brain more then once.  Radiation can affect surrounding good brain tissue (Good Lord we don't want that).  Radiation doesn't "last" forever.

So at the moment we are buying time.  The longer the tumour stays stable the more time I get before radiation has to be done.  Here is a completely made up scenario:  they radiate at the age of lets say 45 and radiation only keeps the tumour quiet for 10 years, then what in the heck am I going to do at 55?  See where we are going with this?

A neurologist is my next stop and I'm also adding a Naturopath Doctor as well.  Adding people to help me buy time can only be a good thing.

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.

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