Blurrrrred Lines

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

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

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

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a video in honor of my 1 year anniversary and while I'm pretty confidant that it will not win an Oscar, it will remain unpublished for some "tweaking" Not to be confused with "twerking" there will be NO twerking in that video.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"

The Joys of Life

Hot summer days are hard on  my head, simply due to this crazy humidity that never leaves in Nova Scotia.  However, last night it was a little cooler and I set out to mow the grass.   All these small things when you are still recovering are HUGH.  This is not my first try at this job and luckily my grass is just a wee bit bigger then a postage stamp.  When I finished I will admit I was tired but the pounding throb in my head was far less noticeable.  Hmmm this is progress as I admire the fresh cut grass.  In my "before brain surgery" life mowing the grass was usually done after working all day, with some whipper snipping, and maybe some weeding to go along with it.  But for now, mowing the grass and living to tell about it is fantastic.

The amount of rest I require between task seems to be lessening.  Doing laundry does not do me in for a day anymore.  I might even get the bathroom cleaned on the same day!!!  I KNOW...I'm blown away too.

 Months ago I couldn't stand being in the grocery store or Wal-mart because of their shinny floors.  Shinny floors and my eyes didn't get along.  I'm happy to report that looking at the floors in box stores no longer make me want to throw up.  This is progress!!!  :)  I still have photophobia, sadly this is not something they can correct with the prisms so I might be stuck with that one.  So my solution...don't look directly at any lights.

When you are in the crazy part of your recovery ( the beginning when everything is happening all at once) you really have no clue where you stand.  It's all too complicated, too busy, too scary.  I finally feel like I have things under control.  I understand what I can and can't do, my limitations both mentally and physically.  I realize that I'm never going to be the same as I was pre-brain surgery.  But maybe that's not who I was meant to be.  Perhaps my calling is to share my brain tumour and brain surgery stories to others in similar situations.  Just as I so desperately searched for this exact thing when I was scared out of my mind.  Maybe the point is for those of you who are healthy to thank God, Karma, Fate..whatever you believe.  Be grateful, be thankful that you are not dealing with health issues.

Life is short, call a friend, kiss someone, adopt a dog, eat chocolate, sing with the windows open.  Start living your life because the joys of life are good for your soul.

Time vs Thyme

It's been a little while since I posted something.  I've kind of had my head into brain tumour research.  From a survivors perspective, that's "Google" research.  What I'm finding is there really is not a whole lot of research  for benign brain tumours.  I'm finding heaps of information about cancerous ones which is fantastic and I've learned a lot.  Some of the information can certainly be crossed referenced.  However, what seems to be misunderstood is how benign brain tumours can be as serious as cancerous ones depending on their location.  Can even mimic symptoms.  I've joined this great website called It's Just Benign founded by Beth Rosenthal who had a benign brain tumour and still suffers the effects.  She started the website because she too was having trouble finding information that wasn't cancer related.  It's a great site with lots of information and a great place to connect with others who are living with lingering side effects.

I've been attending my physio which is working wonders but have to ask myself if there something I'm missing.  Is there something I can be doing for my own health.  Something I could be eating, a supplement I could be taking?  Some sort of alternative medicine. I've seen a wonderful massage therapist named Mary Steckle for years.  She works out of Active Approach in Halifax and specializes in Craniosacral Therapy, Visceral Manipulation and Myofasical Release.  She has been working on my "head and body" for years but like anyone who has treated me in the past for my multiple medical complaints, never suspected a brain tumour.  I've seen her once since my surgery and think it's time to go back.  

Sadly, because of my balance issues I've hurt my knee.  I've tweaked it catching myself off balance I think, however, physio is telling me to get an x-ray as it's been hurting quit badly for 4 weeks.  I wonder if Mary could fix that?

My eyes have improved once again, great way to end a blog post, with good news.  I'm now sporting the lowest prism possible, a number 1.  Am I a number 1?  No, I'm actually a 2, however, like always they give me the option to push my brain and eyes to work together.  So of course, I choose to push it.  It's a bit of an adjustment but I knew something had changed as my eye was hurting with the glasses on and with them off, I knew it was time to see the eye clinic once again.  They retested everything which was great.  My right eye is still not in line with the left but has improved.  She did tell me that they are not able to fix all of my visual problems with prisms and once again time is the only way to tell if my brain and eyes will once again work together.  Time, Time Time...  Maybe my alternative medicine is to start cooking with Thyme?  My perfect anniversary present from T Jay...Thyme in a can, open, water and once again wait for things to happen.  At least this "time" I get "thyme"

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.

Rain+Brain=Sane

Finally, some fresh air!!!  It has been a couple of really hot days here in Halifax and it's not something we are used to around here.  We live on the coast, so it's always damp, add hot sunny days with a Humidex and you get temperatures in the 40's.  Yikes, it was sticky!!!  When you are lacking energy, adding that kind of humidity, you get a girl who was excited to go to Kent Building Supplies simply for the air conditioning.

I swear they turned off my heat regulator switch in my brain.  I picture the inside of my brain kind of like a breaker panel in your house, but I can't get at it to reset the one that's tripped.  The right side of my head feels like it is expanding in the heat.  Pushing against my skull causing sharp pains to zip across my head.  Speaking of sharp pains, yup I've had to up the meds again.  I held off as long as I could without adding another 100mg to my dose but on Thursday when I was shocked 8 times in a two hour period, it was time.  It's not the end of the world if it keeps them at bay, I just can't help but wonder (and of course picture) what is currently going on in my head to cause the Trigeminal Neuralgia to be back.  Is it regrowth, is it permanent damage?  I wish they put a little piece of plexi glass in my head so you could peek in every now and then and  say "yup, tumours' looking good, same place, same size, it's all good."   I guess that's what an MRI is in a way, but I'm impatient and hate waiting for someone else to tell me what's going on.  It's that whole "I'm not in control" thing again.  Since I can't do anything about that, other then accept it, lets move on.

I think my eye might be getting better.  I have that pulling feeling happening from within my brain to my eye.  Kind of hard to put into words, but that's how it feels. I'm hoping to see the eye clinic soon so they can retest.  I'm 3 days away from my 6 months out mark.  I can't help but hear the words of the eye clinic " usually where you are at 6 months is where you are going to be".  Now I certainly understand that 6 months is a rough number and healing is taking place every day.  You do however, have to understand this girl thought she would be back to work in a month.  So brain you have until July 12 to get it right!!!  ;)

All jokes aside I know that things won't ever be the same, there's a tumour in there, doing what it wants when it wants.  In the last couple of weeks I either smell or taste metal.  I can't really decide which it is, I think it's smell, which has led me to cleaning things that I thought were at it's cause.  Until I had the smell/taste in a parking lot and knew it was not something in our house.  Maybe it's me?  Since I shower daily I don't think I smell like a rusty old nail, but as I'm all too aware this last year, anything is possible.

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 :)

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.

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.

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.