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.

Ahhh What A Good Little Tumour

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

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

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

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

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

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

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

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

One Canadian's Brain

I haven't written in a bit as honestly, I haven't been feeling the best.  The definition of recovery is a return to "normal" state.  Hmm I don't really remember what that "normal" was but I can tell you I feel like I'm slipping backward and not returning to anything.  What has returned is daily headaches and  sharp pains in the head. Nausea (which is new and NO I am NOT pregnant) and some odd "occurrences" has me thinking a trip to the good old Doc tomorrow is in order.  So in the month that I should be speaking the loudest about brain tumour awareness, I find myself not in my best state.  I do feel that since I started pouring out my feelings, anger and love for all that is involved in recovering and living with this brain intruder, I have raised some awareness.

One thing that I did get accomplished in the past 10 days is I posted a letter to government through the Brain Tumour Foundation of Canada's website.  It's called Let's tell Government and is aimed at letting our elected officials in Canada know that Brain Tumour research is critical.  The Brain Tumour Foundation would like to have 837 letters sent to Government which represents the 837 people who will be diagnosed this month with a brain tumour.  So far we have 71.  This form is simple, it's easy and YOU don't have to be a brain tumour survivor, YOU just have to want to inspire change.  Maybe someone close to you has a brain tumour HINT HINT!!!!!  So for example:  Primary brain tumours (That's me)  in Canada are not accounted for.  Yes that's right my brain tumour was not counted.  In fact Canada uses data from the US to calculate or approximate the amount of people we have here with Brain Tumous.  Umm, I'm not a scientist, I'm not a Doctor, nor am I a researcher but I am a brain tumour survivor and here is what I had to say to government:

October 3 2012, the day I was told I had a brain tumour, the day my journey with the Health Care System truly began. I am grateful for all the care I have received so far and as I prepare for radiation treatment I continue to be grateful. I have had a long recovery and lots of time to read about Brain Tumours and their impact on so many lives. I am a born and raised Canadian, living with a primary brain tumour that was only partially operable and not at all accounted for. I'm asking you, our elected officials, why my brain tumour doesn't count? More research is needed to aid in the development of The Canadian Brain Tumour Registry. We have no accurate Canadian data, this needs to be changed. I'm asking you today to hear my voice, because my brain tumour counts.

I have received a couple of responses back but only one that was personalized, it was from Gerry Rogers, The House of Assembly in good old Newfoundland.  Thank you Gerry for taking the time to read and respond to my plea for change.  You too can write to Gerry and all the other elected officials about Brain Tumour research, the need for a Canadian Brain Tumour Registry, access to treatment options or to simply say you know someone with a brain tumour.   Chances are I'm not the only person you know who has been affected by one.  One voice to the government is like a whisper, many voices produce change, please click here  and fill out this simple form  It only takes 5 minutes and you will be helping approximately  55,001 Canadians living with a brain tumour raise much needed awareness.  By the way I'm the 1, The Fifty Five Thousand and ONE Canadian, because my brain tumour counts

16 to 41 in 12 Hours :)

I woke up his morning and opened my eyes and there in front of me was 1 of everything.  No double vision!!!  It lasted all of 5 seconds, or a couple of blinks, and then it was gone.  It was enough to make me smile!!!  It's the first time I could see without glasses while on this new prism number, even though it was short lived, I'll take it.

If you have children you will understand the parenting of teenagers (or preteens).  You give them a little space, enough for them to make their own decision, and mistakes, that's how they learn.  However, you reel them in pretty fast if you see or fear trouble coming.  I think as adults we have our own parent that does this for us as well.  Most people believe in something more powerful then them.  God, a guiding spirit, energy, whatever you believe in, can give you the same "guiding" space.  In my case I believe in all three as I don't think any one thing is right or wrong, however, I do believe that God guides and gently pushes me down this recovery road.  Sometimes you need something, anything, to keep your spirits up and I do believe that this morning's 5 seconds of sight was God's way of "reeling" me in.  Like an out of control teenager in a rage yesterday, I had to release this built up frustration that comes with anything traumatic.  If you've experienced it you will understand.  This road is not easy.

A friend of mine, who suffered a very traumatic brain injury many years ago put the following on her Facebook account yesterday:

It's just want I needed to read!!!  I'm not alone in this struggle to get through the challenges.  Thanks to this friend, she will know who she is.  :)  And thanks to God and my guiding spirits for giving me that little gift of sight this morning.  It's just want I needed to put on my "rubber boots" and trudge on.

Picking Up The Puzzle Pieces

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

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

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

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

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

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

Spring Sprint...or Crawl

Four months ago today we tried to give Bubblegum and Honeycomb their eviction notice, unsuccessfully I might add, so from this day on I will call these days (the 11th of the month) my post op birthdays. I get to celebrate my post op birthday is an amazing way, I'm going to attempt the Spring Sprint for the Brain Tumour Foundation of Canada.  It's a 2.5 or a 5km walk to raise awareness and much needed funds for Brain Tumour research.  I am very excited to do this but very nervous.  My balance and co-ordination is much worse around moving objects (other people in this case) AND that's a long walk.  Certainly is strange thinking 2.5km is a long way since before surgery I walked 5km almost nightly.  However, under the circumstances I won't beat myself up over it and will be back to long walks in due time....(there's that word again....TIME)
So, with T Jay, my amazing kids, my best friend, and one of my sweetest co-workers by my side we will set out this morning and see what we can do.  Thanks to all who supported us, Bubblegum and Honeycomb (my brain tenants) thank you!!!  :)

Time to Clean House

What a day is how I started yesterday's blog and today I start my entry with the same three words, What A Day!!!!  Except this entry is written WITH glasses not without.  Ugh was the thought of the day as I moped and sulked a good part of it away.  How can you go from such an amazing high of being able to see in one day, to the very next being back to head tilting and donning glasses?  I don't know the answer, what I do know is that I still think it was a miracle.  It was a teeny tiny taste of what's to come and although it didn't last  nearly as long as I was hoping, I now know it's possible.

So after spending my day cleaning my house, because that's how I deal with frustration, I realized more then how nasty these floors are.  I realized that the "house cleaning" that needed to be done was again from within.   Be grateful, be thankful, be patient.  It's coming with time, I'm doing amazing and that I AM one of the lucky ones. (now with clean floors!!)

I Swallowed a Bravery Pill

My days as of late have been busy.  Well, they are always busy it seems, this recovery thing is time consuming!!!  My last blog was all about adjusting to my new glasses and honestly this blog could be about the same thing.  It's weird, plain and simple, my vision seems to adjust differently to different situations and I'm just not used to it yet.  It frustrates me because I'm an easily frustrated person, I just want my eyes better now.  With all that being said I know it's not that easy and it takes time for my eyes to adjust, time time time, there's that word again.

Sooooo I went for a walk on Wednesday all by myself.  Doesn't sound like a big accomplishment but bravery is everything.  I had a thought, for 41 years I've been walking this earth and not really thinking to much about it, taking it for granted like we all do.  At my last Physio appointment there was a lot of talk about muscle memory and I thought if muscle has memory then so does the brain about walking...out I went.  I made an appointment for a massage which is a 1.5km walk, I needed a good excuse to tell TJay...I had to walk, I had an appointment!!!  I still got the "ummhmm" from him and "that look" but nothing bad happened so going against everyone's advise about not doing things on my own turned out ok, so it's all good.  What I learned on my walk is not having someone with me really made me have to think about depth and balance.  Yes, I stumbled a bit, but never once fell into the street, didn't get hit by a bus and made it to the massage clinic in one piece.  I also learned that looking to far ahead with depth perception issues is stupid and looking down is even more stupid.  A 6 foot range in front is perfect, I've got this!!!!

Finally in this last week I've started to feel like me again, I'm not sure who I was but I certainly was not myself.  You see, I AM super woman, always have been, there is nothing I can't accomplish with my stubborn ways.  However, recovering from brain surgery has taught me that even super woman can't fight the body's need to stop. Brain surgery was the chill pill I needed to learn some valuable lessons about, time, life and love.  I've absorbed these lessons like a sponge and have my brain tumour to thank for them.

Now that the bottle of chill pills are almost gone and I've popped the top off the bravery pill bottle, this blog is about to get a lot more adventurous.  Or stupid, those two words might be interchangeable in the near future

I'm going tubing!!!

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

It's time for the Healing Machine

That's me, the healing machine!!!  Yesterday's post Life in the Fast Lane was all about the people who are helping me heal, family Dr, Neurologist, Neurosurgeon, Opthamologist, MRI/CT techs, Massage Therapist, and the list goes on.  I learned a lot yesterday at my Neurologist appointment, kind of like being back in Bio class.  We talked about myelin sheath and axons and the rate of which a nerve can heal, apparently about an inch a month.  All of this information is important, as are these specialists, but no one can top me, the broken one.  Without me and others like me, in need of repair, none of the above jobs would exist.  Its a `win win` situation for all involved.  I need you to fix me, you need me to work on, fair enough!!!!

One thing that every specialist has in common so far is they all agree on one thing...TIME...time is what the body needs to heal. I hated that word, at one point I thought if one more person tells me that it`s going to take time, I`m going to scream.  I don`t have time, I have things to do, until this week, when I finally surrendered to time. Every specialist in the world can only aid the body is doing what it does best all on it's own, heal itself, and that, takes time.