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.

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.

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.

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

Love Is...YOU

July 8th 2012~You txt me out of the blue, explaining who you are, and asked if you could take me out to dinner?  I thought who goes out to dinner? I txted back saying how about coffee/tea or ice cream?  Just in case you were a crazy nut, I would only have to spend half an hour with you. Your return txt, and I quote..."you have to eat don't you?  We can have coffee/tea and ice cream after dinner"  I stare at my phone and wonder who is this guy, I respond back with a "sure why not" thinking he's a bit of a smart aleck.

July 9th to 15th 2012~small get to know you txting revels he is indeed a smart aleck.  This is either going to be a long long dinner or a fun one.

July 16, 2012~you pick me up at my house and open the truck door for me...interesting I think to myself, a man with manners and chivalry. You surprise me with taking me out for Thai food, wow, he is so much more then Boston Pizza!!!  Conversation is ridiculously easy and as I babble on, you look up at me from your meal and smile at just the right time, not only are you listening but you get what I'm saying.  At that moment I thought ohhhh no, I was just looking for coffee. Crap!!!  Late into the evening the date continues, tea and ice cream do follow, you walk me to my door and a polite kiss good night.  I can't stop thinking about you, yet I tell myself that I'm very happy as a single person.

July 17, 2012~Would I like to get together again?  YES, yes I would

August 16th 2012~We have spent every day together, I really like your company and you haven't given me one reason to suspect you are crazy.  Who are you?  The following week you meet my kids, it's like we've all know each other for years.  By the end of August you are aware of my Trigeminal Neuralgia and see how powerful and debilitating it is to me.  This frustrates you as a Paramedic, helpless with no answers.  I see a Neurologist and am awaiting an MRI.  I get a date, Oct 2, 2012, and we wait, you like everyone else reassuring me that it's nothing.

September 16, 2012~you are well aware and completely part of the planning process for my huge Christmas surprise for my kids.  We have fun finding a place together that will be the perfect family vacation.  We book the end of September.

October 2nd 2012~we are underway with the planning of our Halloween party, both thinking we are biggest fan ever!!!  That day we travel to Antigonish, you poke light fun at my intense fear of going in the MRI tube.  Having a hard time understanding my "there's no turning back now" in regards to answers, a feeling I just can't shake.

October 3rd 2012~The call.   You come to my work place to find me in a heap of uncontrollable sobs, you spend the rest of the day with me as I perch myself on my thinking rock in Long Lake Park, not understand how I, at 40 could have a brain tumour.  Who gets brain tumours?  Why?  What do I tell my kids?  You are there to help me with all these questions and together we figure it out, one painful thought process at a time.  It's more clear then ever, you are a gift from God, in the purest form, true Love.
A crazy whirlwind of appointments follow, pre-op, neurosurgery, family doctor and neurologist.  You are there by my side to ask all the questions that I am too overwhelmed and stunned to ask.

November 9th 2012~We are up early, it's brain surgery day!!!  I can't believe I'm having brain surgery, it just doesn't seem real.  I'm scared, you reassure me, it's all going to be ok.  My friend Heather is there with us.  As I work at this same hospital my surgery is at, many of my co-workers parade through wishing me well.  Tick Tick Tick goes the clock, we are delayed by an emergency.  Very understandable.  I finally fall asleep to be woken up by my neurosurgeon, another emergency.  I've been cancelled.  What? What do we do now?  We go home and in shock I weep.

November 12th~I call in sick for work, I'm not functioning, I can't sleep, I can't eat, I can't stop crying.  You are there with me, to help sooth every tear.  Memories of childhood come flooding back, things I never even realized were there.  Memories of being "let down by the system" when I was 25 and pregnant, finding out my 16 week old fetus had died but because it was December 23rd I had to wait until December 27th for a D&C to remove the baby.  I am beyond angry and stunned suddenly at our medical system. Why does everything horrific happen to me at this time of year?   I have cracked, but I don't know it yet.  Still not functioning, you help with Christmas.  This was supposed to be the best Christmas ever.  You are amazing.

First week of December I go to see a councilor.  I am raw with open wounds that I thought I had healed long ago.  You stick by me,  holding me, helping me, loving me and understanding me.  It's going to be alright.  I work through the feeling of abandonment and I come out the other side.  I ask my doctor to return to work, I'm going to be ok.

First week of Jan~I'm back to work, feeling better mentally then I had felt in a long time.  Your support has been more then anyone would ever expect.  I so love you.  I'm told that my surgery could be January 11th 2013.  Mmmhmm we'll see when the day comes I think.  I kind of prepare mentally but I'm not holding my breath.  If it's not that day, I'm ok with it.

Jan 10th~we get the call, yup tomorrow is my day.  You pretend to be ok, so do I

Jane 11th~We are up early, it's brain surgery day...again!!!  Same room, same sweet lovely nurse.  Guess what...a delay.  Been here, done that, and we wait.  I'm not scared this time and I'm truly at peace with whatever happens.  Lets face it, it's brain surgery around my brain stem, we are not baking a cake from a box here!!!  This is big time serious crap.  We are told no bed for me, mmhmmm yup...I guess I'll be working Monday is what I think.  10:00 it's time, lets go we have a bed, it's show time.  OH MY...I'm having brain surgery.  We embrace and I know when you tell me everything is going to be ok, it is!!! I can feel your fear, we kiss and I'm off.  Suddenly terrified, brain surgery, who has brain surgery!!!   That's crazy.
Throughout the day you keep a journal of what the nurses said, who came to see how I was doing, and how you were feeling.  You and Heather pass the long 10 hours somehow.  I slept through it (I know bad joke) I awake to see you and Heather and I am sooo grateful that I woke up.  I am so happy to see you, I know who you are, I can move my arms and legs, my head hurts.

Jan 11-16 I'm in ICU Step Down, you are there to feed me, walk me to the bathroom, even to bathe me.  You are love in it's purest form.  I know this at the time but can't express it.  Everything is very confusing and I just don't feel like myself.  I'm tired but you push me, I hate that.  Nothing seems normal, you are there to help me through it.

Jan 17~you bring me home, I can barely stand, I can't see right and I still can't figure out how to get the food to my mouth.  You are there by my side, never leaving, always helping, always loving, forever patient.  I'm so glad to be home yet don't understand how in this state I could be.

Feb 16~Recovery is cruising along I can do this.  WOW look at me go.  I just can't see right and I keep falling over, well this is starting to suck!!!

March 16~Recovery continues, you get me a tablet for my birthday so I can make everything REALLY big on it.  The Internet is now mine...muuhwaaahhhaha (evil laugh)

April 16~ We are experts at Doctor appointments.  I have so many Doctors and you take me to every appointment.  Asking all the right questions as I stumble my way through this.

May 16~I'm done, I  don't want to play this game anymore.  I'm tired of the stall, hurry up last leg of this recovery.  I just want to get back to work.  I miss my job, my co-workers, my friends.  I miss my Independence.  I become angry, this is NOT how I saw this happening.  Find out my eye improved a little,  Hooray!!  Find out I have 25 radiation treatments in my future, Horrr...no..no there's no hooray, there is just an overwhelming feeling of this is not done yet.  You are amazing, again the right questions at the right time to the right people.  You do your best to joke through this new information to try and lighten the mood.  I'm having none of it, I'm angry and it shows.  You are amazingly patient with me, I don't know how you do it.  There is not a day that passes that I don't thank God for you, you need to know that.

June 16~onward and upward, we trudge on, I'm getting some energy back, I over do it, you tell me this, as does my physio.  I hate it when you are right.  With grace you never tell me "I told you so".  How are you so patient with me?  You always say you are the luckiest man in the world.  I say I'm the luckiest women in the world and know that God forbid,  if the tables were ever turned I would do all the same for you.  YOU are my soul mate.  We truly know what the other needs or wants.  I am blessed to have you in my life.

July 16th~One year from the day you took me out for Thai food.  Never in a million years did I ever think I could love someone as much as I love you.  T Jay, only you will understand my "mush puddle" love for you. You are LOVE.

Garden Love

I've spent my time since my last post trying to wrap my head around my latest bit of medical news.  I went through a few days were I felt 100% sorry for myself.  NOT a trait that I ever allow myself to fall into.  However, I'm guilty, guilty of the "boohoo's", the "why me's" the "what if's".  This sucks, and I'm ticked off that it's my reality.  I've been cranky, teary, upset and angry and that's OK because that was yesterday (or in this case, many yesterday's)

So here's my new reality, nothing has changed other then information, so stop my belly aching and get on with it.  I know I'm certainly not the only person to ever face the reality of radiation, so, suck it up princess,  I say to myself, and trudge on.  In this case my "trudge" led me to my garden, since I can't drive or even take the bus to "get away from it all", no one can stop me from playing in my back yard.

I plopped myself into my garden the other day, what a feeling to get my hands into the dirt.  I've always said I would be content if someone just gave me a patch of dirt to play in.  It's a soothing meditation, that only a gardener would understand.  It's the best release of anger, grabbing that weed and hauling it out.  I've taken back my little patch of garden that has been neglected over the last year due to me being unwell.  I couldn't believe the sense of power and accomplishment I felt cleaning up a small section.  And although it took me two days to remember some of the names of my perennials that I so dearly love, they did come back to me.  My centaurea cornflower, shasta daisy and clematice are all tucked happily without weeds, in their beds.  Which in turn led to me being tucked into my bed with sheer exhaustion of once again, overdoing it.  I now however, have a clear understanding of when that happens, dizziness, unbalanced, exhausted, and the craziest pressure in my head are all very clear indications that I need to stop.  I sadly have not figured out the point just before this happens, always leaving me saying "oh crap" I need to sit down before I fall down.

When I look out at the my tiny patch of garden that still needs weeks of work to even come close to the beauty it once was. I'm so thankful it needs work because so do I.  This is when I realize that it's the only thing I have control over right now, my little patch of dirt is saving my sanity.  It then becomes clear that my garden and I have taken our relationship to a whole new level.

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.

Smarty Pants

I'm currently down to only 400mg of Gaba now.  Exciting, as of course the hope is to come off this medication completely.  This has caused two things to happen.  First, I no longer feel like a walking druggy.  I've spent the last year fairly medicated and felt I was walking around in a medicated fog.  Second, I'm started to feel things a bit more, sadly the "things" are pains.  The crainiectomy or permanent hole in my head hurts, as does part of the incision.  Now this could also be something else,  nerve regeneration. That whole side of my head has been numb since surgery, yet I feel pain.  So I'm not really sure if it's because I'm coming of the meds or my nerves are healing.  I many never know.  I do know that "brain itch" is still part of my life almost daily and could truly cause a sane person to loose their marbles.  Imagine 1000's of ants crawling under your scalp, all over your head and face, that's brain itch.  The only thing that seems to sooth it is heat.  I've become very friendly with my magic bag.

I'm preparing for an upcoming busy week.  Back to the eye clinic, who will hopefully lessen my prism strength.  Even though you have an appointment there, you need to prepare for the entire afternoon.  It's an odd place because everyone waiting there has vision issues.  So not to many people are reading obviously, and everyone is doing the same thing....people watching.  Lots of fun but can make for some awkward moments.

I also have a massage appointment to try and fix this neck pain I'm still experiencing from having my head tilted for so long.  I'm trying a different type of massage, as all the others haven't seemed to helped.

Then we are off to Dr Mulroy a Radiation Oncologist to discuss possible radiation treatment.  My Neurosurgeon recommends it but I want to hear what he has to say.  Apparently since I'm so young (41) and I still have a brain tumour, radiation might help to "delay" it's growth.  We were told that radiation doesn't shrink a tumour but rather stop it from growing.  Huh, who knew?  I guess we will find out more on Tuesday.

All of these appointment and new information given, wipes me out.  At the beginning of my recovery I couldn't sleep.  It was like I was afraid to sleep or just didn't want to miss anything in my recovery.  Now it's all I do.  I'm exhausted all the time.  I do, however, acknowledge that I am starting to do a bit more.  Laundry, sweeping, washing floors, even trying to weed my sad flower beds.  These activities prior to brain surgery would have all been done in one day after working 8 hours.  Now, one activity equals one nap.  I've stopped fighting it and surrender to my body's need.

I've come to realize that the brain is so much more then the main computer of the body, it is the body.  I always thought I had some control but the truth is I only have influence.  If the body wants to grow a tumour, it will, if it wants to get arthritis, it will, if it wants to get into perfect shape, it will.  The only thing we can control are the influences, smoking, drinking, going to the gym etc.  And even with all these influences both good and bad, the brain will end up doing what it wants in the end anyway.  I asked T Jay one day, "if the brain is so smart then why didn't it tell me I had a brain tumour" and he simply said "it did"  Hmmm, I pondered that for a few days, and thought yup he's right it sure did, I just wasn't listening.  So now I call him "Smarty Pants" you can decide if I'm referring to my brain or T Jay :)

Have Tumour...Will Travel

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

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

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