Tall Latte With Room For Dairy

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

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

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

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


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

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.  

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.

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"

Help Wanted, Apply Within

We are into the second week of September and I have no idea where the Summer went.  All I know is, it was lazy.  Now it's back to crazy ville with early mornings,  late nights and Doctors appointments in between.  I attempted WAY to much today thinking if I was going out I should get "things" done.  Yes it's a common theme, it is safe to say that I'm stupid when it comes to having no idea how to take it easy.  And yes, I always pay a price when I do it, do I learn, somehow I don't!!

So last night I attended my first support group for those of us walking around with these blobs we call brain tumours.  I really didn't know where I fit in, oddly enough since I too am sporting one of those blobs.  I guess it's more the support group thing, I've never been to one before.  However, before long it was easy to see that I will be able to learn a lot from the others and I'm sure in time will take comfort in knowing that someone else actually understands.  Also hearing the common theme of allowing the brain the time it needs to heal in conjunction with dealing with visual/balance issues, made me realize that I just need to get over my superwoman self.  Ugh!!

Now that I'm "out of the house more" it has become evident to me that writing to communicate it way easier then talking.  I can spend hours writing a blog, it's sounds good, planned and organized when I hit publish.  However, talking is instant communication and when my brain is over tasked, my thoughts and harder to form.  It seems that someone took the filing cabinets of my brain and mixed everything up.  Dear Lord, I've lost my brain's secretary!!! I need a new one ASAP I wonder how a job add would read for that?

Wanted: Secretary

Looking for an experienced Secretary who has excellent organizational skills.  Must have advanced working knowledge of the inner brain filing system, which includes current events, past skills, memories and the body's inner workings. Must be able to multitask in an ever changing brain which is under a great deal of stress. Be able to demonstrate and manage routine correspondence and file appropriately.  Confidentiality is a must.  Selected applicant must understand that this brain's filing system was breached in January and all previous files are currently misfiled and under review.  Some Personal Assistant duties may also apply which include but not limited to; public speaking, running errands and attending Physician appointments to take notes.  Finally, this applicant must have a strong enough personality to indicate to owner when to stop and rest.  

Any takers?

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.

I've Come a Long Way Baby!!

I started a blog post late last night called "Never Say Never"  It was about all the things I never thought would be part of my life, prisms, balance, owning a car and no driving etc!!!  I was feeling a bit ho hum about today being my 6 month post op day and here I am still recovering.  Then I got a txt from my friend Jen this morning that said "Celebrate all your accomplishments!!!  You've come a long way in 6 months."  My first reaction was yup that sure is crazy...the 6 month part.  Then I starting thinking I'm focusing way to much on the the post op number and not on what I have accomplished.  I said a while back that on the 1 year mark (Jan 11th) I was going to celebrate it as a birthday, that must have been on one of my "up"days.  Today I certainly wasn't feeling any "celebration" for my half year mark.  Well, thanks to Jen I've been thinking about all that I have been through in the last 6 months and there certainly is a heap of bad but some truly amazing accomplishments that have come along the way.  For example:

I can always find my mouth now when inserting a fork or spoon.  Since I can't feel the right side of my face, there was always the potential for "fork/face injury"

Drinks only sometimes drool out the right side of my mouth.  Yup it's like being at the dentist everyday for me but I've figured out that all liquids need to go instantly to the left of my mouth, helps to avoid the dribble.

I only tip over in public sometimes, I figured out that a cart is a great stabilizer.

My eyes have been improving, still rooting for them to make a full recovery.

I can climb up and down my stairs without them seeming like a mountain.  Not to say that they don't tired me out but I no longer look up and think "are you kidding me"

I'm alive.  I've survived brain surgery, I'm walking around with a brain tumour and I'm alive, really nothing more needs to be said there, that's pretty awesome.

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.

MMEB

Pressure in my head is pretty intense.  Not really liking that so much, not liking the fact that no one seems overly concerned about it.  Umm hellllo people the inside of my head feels like it is trying to claw it's way out and all I hear is, it could be "scar tissue", or "mmmhmmm", and my all time favorite "you are still healing"

Lets see, physio and Dr appointment this week has me upping my meds, no difference yet, still getting the pains in my face, it's all getting old real fast again.  So to make myself feel better I baked some muffins.  Well actually, the truth is, I'm so tired of making school lunches that I thought if I bake some muffins it's an easy toss into the bag.  Kids loved them, me?  Meh, they were ok.  The heat from the oven was however, fantastic.  It's been so cold and rainy here in Nova Scotia that suddenly I have the urge to make Winter foods like stews and quiches.  We've hit the middle of June and the wood stove is going.  I know, it's crazy but it's true.

Since it's been so rainy there has been very little walking weather, which makes my only outings in the car with T Jay.  I don't like driving with anyone (it's the control freak in me)  I like to drive, I don't trust anyone else to drive and well...... only I know how to drive my 5 speed correctly.  T Jay is well aware of my car freak outs and is very happy when I have to answer a txt message in the passenger seat.  I'm not paying attention to the road, or his driving.  I'm normally in a state of panic, grabbing the "holy crap" handle, hanging onto the door and he will certainly hear more then once during an outing.."OMG T Jay watch the road"  "He has the right of way" or  "you are going to give me a heart attack"  Which are all funny things to say to a Paramedic who actually spends his days driving around the city from one accident call to another.  At least when he gives me the heart attack he can save me too.  This "unable to drive thing" is very much having an effect on me.  Someone, being the stars of the show Bubblegum and Honeycomb have taken away my ability right now and until my perspective comes back to a point where I don't think that every car is only 2 inches away from us, there will be no driving.  Maybe I've lost my confidence, maybe it will all go away with my eye improvement.  Maybe it won't.  So while I'm not driving and am stuck in the house, I will continue to search Pinterest for the ultimate muffin batter, because we all know Muffins Make Everything Better.

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!!)

It's a miracle

What a day!!!  As I type this I do so without glasses, and since I don't know how long my amazing vision will last, this will be a quick post.

Every morning when I wake up and open my eyes there are two dressers, two lights, two huge messes on my bedroom floor.  I only have one dresser, one light and I'm only half a slob, what I do have is double vision.  As I've written in past posts, my double vision was first corrected by me tilting my head to the left to compensate for the right eye's issues.  Then trips to the eye clinic had me sporting new glasses with prisms and my life became manageable.

Yesterday my "brain itch" (any of you who had brain surgery can relate to this highly annoying feeling of ants crawling inside your head) was horrific.  I said to T Jay last night that if I loose my mind it will be because of brain itch.....AHHHH I can't stand it.  I thought maybe I over did it, raking the dead plant material from my front flower bed yesterday.

This morning started like all other mornings, the alarm goes off I open my eyes and my day begins.  I get the kids up for school, make their breakfast, pack their lunch and ship the first one out the door.  Since I've been home recovering from brain surgery I've watched them get to and on the bus safely every morning.  This morning was no different except it's nice and sunny here today.  I rubbed my eyes as the sun was too strong on them and I scream to my son, who I startled the heck out of.  "Is my head straight...look mom's not wearing any glasses and there is only one of you!!"  He replies with a big smile and a yes mom your head is straight.  I am beyond excited, off to the mirror I go, yes my head IS straight.  WOW, I don't understand and I don't know why I can see today without my prisms but I will take every minute of it (so far three hours)  I'm sure it has everything to do with healing and swelling going down and lots of other medical explanations but I like the idea of "It's a Miracle" way better.

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

Can she do it? Yes She Can..

The things you find out when you have brain surgery, a balance and dizziness centre, right here in Dartmouth, NS.  I had no clue until my Occupational Therapist and family Dr recommended that I go see them.  Ok, I thought, I'm willing to try anything.  I didn't really know what to expect, and like everything so far I thought that maybe this was for other people, I don't really have this problem.  It became apparent that I was in the right place when I started filling out the paper work.  Every question on their questionnaire was surprisingly aimed at my symptoms.

In I go and my physiotherapist starts her assessments, yup I have some balance issues.  The great news is that exercises can be started at home to push my eyesight and retrain the brain. Concentrating on keeping my head and neck straight is a must and now that I have my new glasses with the prisms, (that we picked up today) this should become easier with practice.  The cool thing I noticed this afternoon with my new glasses is I can lean back and look up and not see double anymore.  This is a seriously cool realization, it means I can now lay back in bed and read. I can lay on the couch and watch a movie, instead of having to sit up straight.  These babies are hopefully my ticket to driving again in the coming months. I'm loving my new glasses, even loving the headache they are giving me right now cause I'm thinking, "that's right brain, fix yourself, you can do it"

And with all of this excitement today I'm now exhausted at 730 and that's with an afternoon nap.  So I just might crawl into bed early and watch a movie, just me and my spectacles, ahhh the thought makes me giddy.

It's Tumour weight right?

I'm not sure about you, but I have two children and for years after my children where born I blamed the extra 10 to 15 pounds on my pregnancies.  I'm all of 5 foot nothing so 5 pounds looks double on a small frame like mine. When my youngest reached 8 I thought hmmm maybe, JUST maybe it's no longer pregnancy weight.  So, I joined the gym a year later and couldn't believe how quickly the body can change when you treat it right.  It wasn't the weight loss, although that did happen, it was the change in shape that impressed me more.  The more I worked the better I felt, for a while.  During my year at the gym my dizzy spells became worse and the rise in blood pressure caused a very unpleasant feeling in my head.  We blamed it on my low blood pressure and carried on.  It got to the point approaching spring when the gym and I just weren't getting along anymore and I went less and less.  Weeks later I was diagnosed with my brain tumour.

I've been inactive since June of last year and it shows.  It's the best excuse in the world and I can't even use it!!!  No one would ever say to you "Wow, you've put on a lot of weight"  at least not to your face. You see this would be the perfect time for me to use the "tumour weight" excuse..."ya, I know I did, but I was diagnosed with a brain tumour and I'm recovering from brain surgery"  That opens the door to "oh I'm so sorry to hear that" which in turn I feel I must be polite and say "thanks but it's ok".   So why do we do that?  Why as humans do we say things are ok when they are not?   It's not ok that I had brain surgery, it's not ok that I still have a brain tumour, it's not ok that vision and perspective problems keep me from getting out for walks.  It's the same reason we say "good thanks" when someone asks how are we doing, even when you are suffering from the worse flu ever!!!  Social awkwardness.  We all do it and it's ok that we do.  It's not in our nature to purposely hurt someone's feelings.  We're not normally taught as children how to deal with situations that surround tragic or sudden.  We learn this from our parents, and this parent would love to take a stand and teach my children how to deal with social awkwardness.  I'm living it, I should be the perfect educator right?  I might be, except my " tumour weight" is not solely measured in pounds.

The Eye of the Storm

The Eye Clinic was the appointment of the day,  proceed to the "green" waiting area for your 1:30 appointment.  We were taken right in which led us to finding out that  prisms were the answer or at least an aide in helping with the double vision.  Since I don't normally wear glasses, they could only fit the sunglasses in my purse with the prism lens.   I was told to go and get a pair of glasses (without any prescription) and bring them back and she would fit the lens to those. I guess I'm going shopping!!!  It is actually amazing how the prism works, allowing my vision to realign so I no longer see double.  The key is to figure out how to keep my head straight again, it's been 9 weeks with this styl'n head tilt.  What we were told today is that the damage to the nerve during surgery could take up to 6 months to heal.  She has seen it take as long as 1 year but "usually" where you end up at the 6 month mark is what you are going to have.  Ugh!!!

Next to see the opthamologist..off to the RED waiting area..and waiting area it is...with eyes dilated, we wait, and wait and wait.   One person left in anger due to the long wait, people come in, people leave, I wait.  The "red" waiting room is starting to make me red with anger.  This is the longest I've been out for any medical appointment since my surgery and I'm exhausted.  We continue to wait, another person leaves in anger.  Finally with only three people, me being one of them, in the waiting room...it's now 4:30 I ask, "have I been forgotten"..."oh no it's just a busy clinic day, we are double booked all week because it's a short week"  I loose it, I go all brain tumour on them..."Not my problem" I say..."this is unacceptable, I've just had brain surgery"  The response was, your next...um there is only one person in the waiting room and he's waiting for his wife so ahhhh yeah no kidding I'm next. I was then told how lucky I was to have both appointments on the same day....believe me I think to myself there is nothing "lucky" about any of this.  I then get apologies that they didn't know I just had brain surgery blah blah blah, that's when I really go all brain tumour on them..."it's right there in my chart, she was reading the report at 1:30 while testing my eyes."  It's at that moment when I realize that the "green" section doesn't communicate with the "red" section.  Out comes the Dr and I hold nothing back, I am a very unhappy health care user at this point.  He is very calm, very apologetic and has definite empathy for my situation.  He completes all his tests and basically says the same thing as the 1:30 appointment.  However, we will see you in a couple of months to retest your eyes, to see if they can change the prisms.

Grrr I am mad, mad with a capital M, I'm hungry, I'm tired and I am for sure cranky!!!!  We leave at 5pm 3.5 hours after we started.  If maybe they prepared you for an afternoon wait.  I would have at least brought food, like the other couple did, they have obviously done this gig before.  So I continue on my rant creating a storm on anger inside of me.  As we leave and go through the cafeteria, there walking towards me is a blind man with his seeing eye dog.  I stare at him, as we walk past him he asks for someone to help him, and I immediately turn around asking him what he needed.  A lady working the cafeteria comes to his aid.  This is when I turn to TJay and say, if that is not a sign from God telling me to shut up and be grateful I don't know what is!!!
The man with his seeing eye dog is my "eye of the storm" the moment when everything goes still and calm, and he doesn't even know it.. So thank you kind soul for making me realize once again that all of this as crappy as it is, can always be worse.  That I can weather this storm, with both good days and bad.

Yesterday, Today and Tomorrow

This blog could be posts all about how I felt, how I'm feeling and what I expect to feel like but rather a bit of that, mixed into wood piling and cheerleading. I know it's a wild read, stick with me....

Yesterday:  Was the day that wood for the wood stove was picked up by a large truck that we rented and brought home.  Of course because it was a week day we were unable to enlist help which left me, my 10 year old son and my better half.  When we arrived, I was not "allowed" to do anything...doo dee doo dee doo....not what a Type A Personality likes to hear or do.  Type A personalities should not get brain tumours, we don't have time for them.  Some time passed as they worked along and I pushed the wood with my foot to the back of the truck, you have to understand this is SO not me.  I AM superwoman, I could pile that entire cord with one hand tired behind my back while riding a unicycle.

So the first time I try and lift a piece (we are talking about the smaller pieces of soft wood) I'm given "the eye" and a "what do you think you are doing?"  To which my carefully planned response was " My neurosurgeon said I could get back to some normal daily activities, this is no different, in fact lighter, then a laundry basket"  This response got me the "other eye" but I was "allowed" to carry on.  To which I did, however, was tired within minutes and realized that laundry kind of washes itself, wood, not so much!!!

Today:  The biggest Cheerleading Competition starts today.  Have you ever been to a cheerleading competition?  If not, I will describe it to you from my perspective.  Cheer Comps as they are commonly referred to are like watching one of those ant kits.  You remember them from when you were a kid...double walled glass with sand in the middle.  Fascinating to watch the ants as the travel single file in a steady stream, never stopping, always moving.  Cheer Comps are just like that, hundreds of  cheerleaders traveling in packs, all dressed alike, moving very quickly, waiting to perform.  Again, fascinating to watch but my perspective is still WAY off.  Mix that with double vision and hundreds of cheerleaders turn into thousands, it's almost painful.  Wouldn't miss it for the world though, it's my daughter after all.

Tomorrow:  Day two of competition, day one of moving wood from driveway to backyard.  Three days, three more days of healing, where I still feel the same, the same as yesterday, today, and most likely tomorrow.