Tuesday, December 30, 2014

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.

Wednesday, November 19, 2014

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.

Saturday, October 4, 2014

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.

Tuesday, September 30, 2014

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.

Thursday, July 31, 2014

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.

Thursday, July 10, 2014

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.

Friday, June 20, 2014

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.

Monday, June 16, 2014

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.

Tuesday, May 13, 2014

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.

Friday, May 9, 2014

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

Tuesday, April 22, 2014

Live In The Moment My Friends

The sun is shinning in Nova Scotia once again.  If you can hide from the North wind that still reminds you it's April, it's actually really nice out.  I've spent my last few days headache free.  The last one was a doozy so I guess my brain tumour is taking it easy on me.  I'm ok with that.  Feels fantastic to have my hands in the dirt pulling weeds from the garden, raking leaves and just sitting in the sun like a cat.  This new found "energy" that the sunshine gives you is still short lived as napping and raking seem to go hand in hand.  I have finally surrendered to the fact that my days of pulling a full work day, then a full "Moms" work night are over.  Lots of things don't get done around here anymore and that's OK.  If only half the floor gets swept, so be it, the dirt will be there tomorrow.   Sadly I'm having a hard enough time keeping up with this, I haven't even added the 8 hour work day yet.

The Easter Bunny hopped into our yard this year and brought a large trampoline.  My kids are over the moon with excitement and enjoying this new toy.  I got on with TJay and we held hands and bounced together laughing like kids, I can't tell you the joy in this.  Small things when you have a serious illness are everything.  The following day my kids had me on once again.  You know those moments as a parent when you say to yourself, I need to breathe this moment, etch this moment, live this moment as it is beyond special.  That was one of them.  Watching them bounce and the two of them laughing at my inabilities was priceless.  They are my everything and are proof that God gives us gifts of love in the form of children.  I paid in the form of pain that afternoon and the following day, feeling like I probably shouldn't have "played" on that trampoline.  However, I wouldn't change those moments of sheer joy for anything.

As I type this I hear the giggles and the squeak of the springs of that trampoline.  I'm missing moments and although we can't capture them all, my plan is to do my very best.  Enjoy today's sunshine, laughter and above all health.

Monday, April 14, 2014

Migraine Madness

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

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

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

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

Tuesday, March 25, 2014

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.

Wednesday, February 26, 2014

Blurrrrred Lines

So my eye ball is driving me mad.  Pulling and paining on a daily basis.  The great news is according to the eye clinic my "eye turn" has taken a turn for the better and I've been sent off to my regular eye doctor for a full eye exam.  It turns out that I've reached the dreaded, middle age, according to my eye doctor,  I need glasses, bifocals to be exact.  Bifocals?  Yup, that's middle age I guess, and a little thing called a brain tumour.  However, due to my balance issues I can't "hide" mine with invisible ones, nope, I need the bifocals with the lines like Grandma had.  I haven't figured out exactly how I feel about that but I have figured out that I'm mentally refusing the blurred lines.  I think I will opt for two pairs, one for general seeing and one for reading,  Of course both will be sporting a plastic prism for a bit longer.  If after a few months of using the new glasses my eye still needs the prism they will have the prism actually etched right into the glass.  I'm hoping to kick the plastic prism to the curb, but I was also hoping to do that months ago.

So as shocking as the word "bifocal" is, middle age was a term that I didn't like hearing.  It's like a right of passage when you get into your 40's.  I've stewed over this term as it's not the first time I've written about hearing the words "well when you reach your age".  I've stewed about it because you just don't hear that at 39 but look out a day over 40, you get slammed with reality.

As my next birthday fast approaches, I've been thinking and I realize that "middle age" is not a privilege that everyone gets. Not everyone gets to whine about a new grey hair or the ever deepening "crows feet".  So I'm going to embrace the words, rather then cringe as they spill from the next Doctor's mouth.  Yes, I am middle age, I have grey hair and lots of wrinkles and aren't I lucky!  I get the privilege of another birthday and I am beyond excited about that.  I'm also excited about birthday cake, it's my favorite, I guess the pocket book will determine if I'm looking at it through clear glasses or blurred lines.

Wednesday, February 5, 2014

On Line Foot Prints

Death, it's not something we talk about until it happens, at least not for most people.  I've thought about it a lot in the past year and a bit.  Not because I thought I was going to die, but because I know I'm going to die and so are you.  Now before you get yourself all worked up and think I'm suicidal put the phone down and hear what I have to say.  You are going to die just like me but sometimes, something makes us think a little more about it, like, I don't know, maybe a brain tumour.  A personal directive is something I never thought I would be filling out at the age of 40, but I did.  Now heading for my 42nd birthday I'm alive a kicking and very grateful for that, but that doesn't mean that death isn't always in the back of my mind.

What has me thinking about it a bit more lately is reading posts on social media about the loss of another young person.  Post such as, gone to soon or I'm in shock, had me thinking that these post aren't about the person who died or their family but about the person who posted it.  You the "poster" of such vague words are looking for attention.  "Who's gone to soon", "this can't be good", "what's going on?" are the responses people write, which in turn the "poster" leaves the world hanging in suspense.  Yes I understand that you may not want to say who or what due to privacy, then take that privacy one step further and share your shock in private messages or to the family.  I'm sure we are all guilty of it, but it doesn't make it right.

I began to think, if I died of my brain tumour tomorrow how would I feel if there were post about me floating around in a vague manner.  It would be weird, mostly because I'm alive right now to think about it.  Since I am alive to write this down I ask that you just don't do that.  Nothing infuriated me more then finding out that someone posted what T Jay wrote, word for word about me on their Facebook account, as if they were the one by my side, without even a consideration of how I might feel about that.  Having brain surgery is a very private thing, in which I would expect that only MY friends would have the right to know how I was doing, not a bunch of strangers.  AHH but that is the thing with social media isn't it...share share share and before you know it, strangers are hearing private personal information.  I'm doing it right now and have been for some time with this blog, sharing to the world my struggles, my battles, my triumphs with this brain tumour.  However, I have made that decision for myself.

Yesterday for those who are on Facebook, they came out with a little video for their users to see their life events since they joined in honor of their 10th birthday.  I watched mine, very well done, made me cry, got me thinking.  Look at my online foot print, there forever, just like this blog.  It's kind of like being naked, however, not in pictures but in words.  They say a picture is worth a thousand words, I say true, however, use your words to be clear.  I don't want vague words spread about me when I die, be clear if you must post.  On the anniversary of a old school friend's death today I wonder how I didn't know 8 years ago that he passed away.  I think because I wasn't connected to social media of any kind back then, if I was, I would have known.  Now his sister, who I have reconnected with through social media asks something so simple today, do something kind in Shane's memory.  She has used her words to be precise and for that I thank her.

I pray everyday that I get to live to 100 like I've always said I would, but if I don't please don't beat around the bush.  "so sad that Kelly passed away, or did you hear of Kelly's passing" I don't care if you say so glad that crazy women finally kicked the bucket.  But please please please be to the point, you will drive me crazy from my deathly slumber if you don't.  (Type A personalities think they have control even from Heaven)

Life is short, too short for perfectly clean houses, too short to hold anger or grudges (I need to release mine from the past two weeks) to short to use the term "someday" that someday is today, go be kind, go be honest, go leave an amazing online foot print because the ones in the sand wash away.

Saturday, January 11, 2014

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.