730 Days of Recovery

2 years ago today I was in the OR having my brain tumour "debulked" I was asked last night if 2 years felt like a long time.  The answer to that really has two parts.  Do I believe it has been two years since I've been off work?  NO, and I think that's partly because when your brain is shaken up like mine, your mind isn't really on work.  That amazingly goes to the back burner, even though its such a huge part of your life when you're in it.  Do I feel like it's been a long time floating around in the medical system.  Yes, a very, very long painful two years.  So in January last year on my 1 year "Craniversary" I wrote a post "365 Days of Recovery"  Today I repeat the blog idea, but with another year of reflection.  Here's what 730 days of recovery look like to me:

That drugs play a bigger role in recovery then I thought.
That having a Neurologist after almost 2 years is a good thing.
That falling through the biggest medical crack has hurt me physically and exhausted me mentally.
That my kids are still just as amazing, thoughtful, kind, human beings as they were 730 days ago.
That the word "Time" is a joke now.
That my eye ball will never have feeling in it nor will my vision correct, those days of wishing and waiting are over.
That you can still have headaches every single day.
That I have more specialist now and I'm grateful for everyone.
That there is a perception in Canada that you have to "accept" the Doctor/Specialist that you are referred to because our Health Care is free.
That not all Specialist graduated from the School Of Bed Side Manners, you don't need that energy as part of your Rock Star Specialist Team, choose wisely.
That these new drugs allow me to think more clearly.
That thinking can sometimes land me in bed from over doing it.
That MRI's are still hateful, and a warm smile and comforting words from an MRI tech can make or break your experience.
That on my 2 year "craniversary" I'm probably more hateful then hopeful.
That I never thought people I've never met in person, only through online support, would become household names.
That people who heal together, band together.
That I would rather own a condo or an apartment than a house.
That one of my true enjoyments of the day is watching the chickadees in my bird feeder.
That having a dog has brought me unbelievable joy even though he bit me.
That I'm extremely grateful that my brain tumour hasn't grown in 730 days.
That my tumour sits at 1.8cm x 1.6cm which is better then 2.5cm x 2.4cm x 2.1cm before surgery.
That there are still days I can't believe I have that blob in my little tiny pea head.
That my Radiation Oncologist classifies 2mm as growth, hmm not much wiggle room.
That once "growth" happens everything gets re-evaluated.
That I pray for no "growth"
That several people have passed away in my life which has me thinking about my own funeral.
That I don't want a funeral but rather a celebration of life.
That I'm aware of how "shockingly" good I look considering...umm thanks?
That as I remember things more clearly, it's like a kid in a candy store kind of excitement.
That I don't expect you to understand that.
That I'm no longer afraid.
That acceptance is a gravel road.
That the cold hurts my head and face.
That Tegretol has finally some what settled my Trigeminal Neuralgia, Thank God!
That I'm still blown away by people who "pop" out of brain surgery and carry on.
That anyone who knows me, knows that's exactly what I thought would happen to me.
That this has been the biggest lesson in human compassion anyone could have ever given to me.
That once again my problems are no different then your problems, mine are just in my head.
That if you didn't laugh at the above line you need more coffee.
That my kids accomplishments make me burst with enthusiastic pride.
That I wish my kids didn't have to deal with such big issues in their lives.
That being said they are the most loving, kind and well behaved kids as they know they are lucky to have their mom.
That my love for TJay has no spoken words other then he is the worst boyfriend ever.
That you wouldn't understand that inside joke but it is the best compliment I can give him.
That not only did TJay bite off 2 kids, but a brain tumour too.
That speaks volumes about the man he is for not "spitting out" that mouthful.
That I cherish this love and nurture it's growth.
That as I type this I get shocked to the face, thanks Tegretol for wrecking my faith in you settling my Trigeminal Neuralgia!
That loosing your hair can freak you out more then you ever thought.
That I get another new Doctor this year.
That I'm shocked to find out I was supposed to have this Doctor all along. (*cough* medical crack *cough*)
That I have a much deeper understanding for the medical system.
That I wish a was a Politician, no a Doctor, no wait a Researcher, to evoke change.
That I've started to ask myself after 730 days-at what point does it go from Recovery to Reality?

                                                                                      illustration by Phil Foster

It's The Natural Kind of Disapointment

Ok I realize it's been a while since I've posted anything.  I know when people start to send me Facebook messages or actually use the telephone to call, it's time to write.  I was very excited in my last post to be seeing a Neurologist and a Naturopath Dr, and that excitement is still there, things have just changed course.

My medications, my Neurologist has a theory about the meds I was on for two years and thinks it's best to take me off of them over a course of 6 weeks and put me on a new drug.  My body is not happy right now and has basically caused me to go into hiding. My vision is off, my balance is off, migraines have returned, my trigeminal neuralgia is back in it's original electrifying form.  I'm sleeping all the time and I swear my head has changed shape.  All this being said,  my well thought out natural approach to brain tumour eviction (turmeric) has been put on hold due to the med change.  We can't introduce too many things at one time.  I get that, and agree, it's just another waiting game.

So I haven't fallen off the face of the earth, I'm just trying to keep my feet planted and my head clear as I had no idea that changing medications could have that much affect on a person.  I'm truly trying to just keep it together.  At the end of the day, I still have a brain tumour, there are days when that statement is harder on the head then others.

Might Is Mighty Fine

Well I finally have a Neurologist, he seemed as shocked as we were that no one other then my Family Doctor was really taking care of me.  "Your neurosurgeon?" "Nope she left right after my surgery for the USA"  I said.  Then I think I made some sort of comment about being forgotten.  He asked all the questions he needed to know, about radiation, who's my radiation oncologist, chief complaints, meds etc.  Then did the typical neurological medical exam (which I think I passed but I never did get my "grade")  Lots of Q & A led us to a switch up in my medication.  There will be a slow decrease of the one I'm on and a increase in the new one.  There was a lot of talk about how my issues were vascular related, hence, my inability to do anything that forces blood to my head without it going to explode.  That pretty much covers anything from lifting a bag of groceries to crying.  I explained to him how hard it is to go from someone who went to the gym to a softy.  He said with a smile, "the great thing about this new medication, it might help with that."  he asked if we owned a tread mill and after hearing yes I was am to hop on and get a marker as to what I can do now before my head pops.  Then we can see if there is any improvement with the new meds.  I can feel my excitement starting to build, one drug to help with most of my brain tumour symptoms.  Ohhh it's a great day.  Back in three months in the plan of action and I leave the office feeling excited.  Someone on the traditional medicine side, who understands brains, how they work, how they don't work when you grow a brain tumour in there, is actually on my side.

T Jay being the voice of reason, as he always is, said don't get too excited, he said it might work.  And once again TJay is right (insert, muffled under my breath words here) :)  This is why I bring TJay along with me to all my medical appointments.  First of all, unless I recorded the entire visit I wouldn't remember anything the Doctor said by the time I got home.  It also allows us both to be involved in this very personal journey that at the end of the day affects us both.  Plus TJay can see my reactions to Doctors and knows if he is going to have to build me up or bring me back to reality with repeating sensitive words like "might."  We both agree however that "might" in this case is a very powerful word.  I have been living for 17 months post opp with my radiation oncologist using words like "I have no idea why you haven't recovered from surgery" to " we might be able to help some of your symptoms with simply changing up your meds"  I'll take it.  The reality is, the fight against the brain tumour is not going to change, however, if a simple med change "might" give me back some of my life, that's mighty fine to me.

I'm Done With Bad Days!!

I've added another member to my team.  This member I think might make her way to Captain in no time at all.  She is a Naturopath Doctor with a gentle soul and is willing to take me on as a patient.  In fact she listened to me for 1.5 hours.  Yup, I'll repeat that, a Doctor who was actually interested in what I had to say about MY body for an hour and a half.  Did I have to pay out of pocket, you betcha, but I got what I paid for and then some.   The appointment itself was difficult as it's the first time I attended a medical appointment alone.  Normally I have T Jay there to add the missing pieces.  Instead I was jumping around, mixing up dates and time lines but she was very understanding.  I was exhausted, my brain taxed beyond it's limits but I pushed through it, as after all, I should be the expert on my own body.  I was beaming the rest of Wednesday, someone actually listened to me, I couldn't wait to tell T Jay all about it.  As I was cutting celery to put in our salad for dinner that familiar feeling of the burning neck, and then the dancing aura that is ohh so familiar with what I now call "pre brain surgery" migraines.  Zack you are now on making salad dressing duty, Haley take care of the rice, I have to close my eyes.

I should have known as that afternoon my Trigeminal Neuralgia was acting up.  I knew that it was information overload.  I explained to her my filing cabinet theory on how brain surgery just dumps your well organized life and memories out all over your skull floor and how hard I've worked to pain stakenly refile each little piece of paper.  (It was actually very evident to me that my files are still very mixed up when I had to do it alone, T Jay has become an excellent secretary)

I see my new Neurologist in two weeks and hopefully he is as open to listening as the latest member was.  Funny thing about traditional medicine, it's never really clear on who's appointment it is.  My appointment explaining my issues and asking for help or their appointment telling you how it really is.  It's a weird line there I'm learning.  Either way, each day is a new one in this journey of healing.  There will be good days and then there will be great days.

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.

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"

Put Your Hands Together...

When an illness finds you and it's stubborn enough to hang around, you can't help but feel a bit helpless.  Since I use to hear quit frequently "I don't know how you do it"  (referring to working full time, raising two kids, one with health issues, kids events, blah blah blah all the things that every other Mother does for her kids)  I never felt I was doing anything extra special.  I was doing my job as a Mom and wanting to do it right.

Now I hear the same thing.."I don't know how you do it"  However, this time it's all of the above and a brain tumour too.  And I can tell you how I do it, it's with help.  I've had/have so much help that I think it's certainly worth mentioning because you just can't do this with out it. I'm blessed to have received this help in so many different ways, each one unique, each one I'm grateful for.  So if you could put your hands together and applaud the following for their contribution in the "lets help Kelly down recovery road campaign"   In no particular order...I love and appreciate the following...and they know why:

T Jay               Mom          Simon         The Brain Tumour Foundation of Canada
Dawn 1           Zackary      Jim              My co-workers
Laura              Kyra           John            Heather 1
Jen                  Shipra         Haley          Heather 2
Peggy              James         Wendy        Lindsay
Sue                 Glenda        Helen          Sheila
Ann                 Ona            Aunt Agnes Madi
Sussie             Todd           Joe              Andy
Ally                 Sophia        Angie          Thousands of prayers from people I've never met
Shirley             Christine     Lesley         Thousands of prayers from people I know
Christy            Ron             Brian           Countless get well cards and FB wishes
Steve              Amy            Tracey        Karen
Tanya             Peter            Zoe            Shawn 1
Jorden            Steven         Dawn 2       Alison
Sonja             Shawn 2       Caren         Connie
Ivy                 Linda            Ellen           Shawn 3
Greg              Jared            Spike          Brandon
Brandon         Mary            Meghan      Dr Lecky   
Dr McLean    Dr Lwu        Dr. Mulroy  Dr Tan
EASE            The Balance Clinic           7.3 Step Down

And finally to the two Nurse who never said BOO when I INSISTED they take me back to recovery to get the proper adapter for my Art-line.   (OH MY GAWD, can you imagine)  How I can remember this clear as a bell but can't remember names, I will never know!!!!

So, in the end I don't have to say what everyone did or how they helped, but helped they did.  I am and will forever be, grateful for each and everyone of them.

If by some chance I have forgotten someone, I am simply going to pull the brain tumour card and say, "Seriously, I have a brain tumour, how do you ever expect me to remember all of that"  LOL
Thanks for being super awesome in my life everyone.  And a special thanks to T Jay and my kids for letting me pull the brain tumour card almost everyday to which they only "groan" 50% of the time.  :)

The Shocking Truth

Nothing more exciting then getting jolted in the face.  Yes the shocks are back, my old friend Trigeminal Neuralgia.  I didn't like this friend, in fact I had to do drugs to ditch him.  I was told that there was a possibility that he might return as I weened myself off of these drugs and sure enough here he is.  Off to my family Doctor to see about increasing the meds back up.  I already have "permission" from my Neurologist to do this but I don't think it's a good idea to just start taking more drugs without anyone knowing about it.

One of the most common questions I get asked as I wonder down recovery road is "what do you do all day?"  It makes my skin crawl and a deep rooted scream is silenced as I calmly tell them the following:
~I'm recovering from brain surgery, therefore everything I do takes twice as long.  Laundry is day long event.  Grocery shopping (with help) is exhausting.  Getting my mail is an outing.  Vacuuming my floor in my tiny house makes my head hurt.  Then, there are weekly appointments with this specialist and that specialist.  And on top of all of that, paperwork, paperwork and more paperwork.  Everyone needs a form, questionnaire or in some cases a small book filled out.  I understand the need for insurance companies to have all this documentation, it's important but when you don't drive it's not the easiest to get to my Doctors to have this all taken care of.  So to answer the question of what could I possible do all day,  you must be bored out of your mind the answer is NO.  I hope you never have to recover from brain surgery or live with a brain tumour because it's a living hell, it's exhausting and it's by far the most effort I have ever put into something in my life.

~That's what I do all day...oh and get shocked in the face with the most excruciating pain know to man.

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 :)

The Unbreakable Bond of Motherhood

Mother's Day, the day of reflection.  At least it is for me.  I like to spend Mother's Day going over the last 12 years in my head.  Memories of ewwy gooey paint, play-dough, first Christmas Concerts and in our family's case, the IWK Hospital.  Being a mom to a child/children who is/where sick is no different then any other mom, we just have more grey hair.

My first born is a Clomid baby (fertility drugs), and if you had to do any kind of fertility treatments you will understand the exhausting care and planning that is involved in trying to conceive   I spent a good part of my 20's in anger over women who just "happened" to get pregnant or called it a "mistake"  My infertility took over my life,    a devastating miscarriage at 16 weeks, then finally on Christmas Eve Day I found out I was pregnant again.  A pregnancy that was not routine by any means, led to a healthy baby girl weighing 7lbs 5oz.  Everything was fine until she was 2 days old when she had a terrible allergic reaction to the diapers in the hospital,  it was like someone poured hot water all over her diaper area.  Easy fix they told me, just change the diaper brand.  That reaction was just the start of years of trips to the ER, countless specialist, x-rays, blood test and antibiotics.

Haley was diagnosed with a condition called Hypogammaglobulinemia (THI) at the age of 1.  This is one of the better immune deficiencies you can have, their immune system kicks in around the age of 2 or 3 and they tend to live normal healthy lives. When Haley was 2 years plus a week she welcomed a baby brother into her life, he was not a Clomid baby, therefore, he was free :)  Zack, a chubby 7lb 4oz little guy was brought into our life at a point when Haley was constantly sick.  Being on Mat. leave certainly did help to limit the amount of germs she was exposed to but it was still difficult.  After returning to work for  about 2 months it was obvious that I had more sick calls then work time and quitting my job to care for my children was my only option.  I then opened my home to friend's children and became a day time Mommy to a handful of kids as their parents worked.  It was perfect, it allowed me to be home with both children, especially her, when she needed me most.  Some of my best memories are of being a mom and a "day time mommy"

As much as Haley should have been getting better according to her Doctors, simply due to age and immune system maturity, she wasn't.  Zack was not without his own illness as he would pick up a lot of what she had.  He however, suffered from his own problem, digestive issues. Why do they both have digestive problems?     This is when I began to really do my research.  I swear I'm a MD, I just don't have the paper to prove it...self taught all the way. I became fascinated with how the immune system worked, why are they doing this blood test, why does she get the same repeated illness time and time again?  You have to understand Haley was sick ALL THE TIME, ear infection, lung infections, Pneumonia, chronic bronchitis,  bad gastrointestinal issues, measles, E coli, roseola so many times I'd lost count, all of this before the age of three.  She had an Immunologist Dr Izzukutz at the IWK and still does to this day, a Pediatrician, Dr Blake who was amazing and Haley knew who at the lab she wanted taking her blood and who she didn't.  All of this time spent in hospital and researching of blood types and cells led me to return to school to became a Phlebotomist.

While studying one night after a very long day of Zack not feeling well because of his tummy and she was starting to get sick, spiking a high fever, we had a horrible scare.  Haley and Zack's dad (Todd, my ex husband) works on the oil rigs and had just returned home from a long stint away.  As we tried to settle her, Zack, at the age of 3 was insistent that he needed to use the toilet.  From her room to the bathroom to her room I hear, "Mommy the poop won't come out" and there is my son sitting on the toilet with his bowels hanging out of his body.  I panicked, as Todd called the IWK and after EVERYTHING I had been through with Haley, I had no idea what to do. Upon instruction to bring him into EMERG by car since he was not bleeding I did what I was told.  It was the first time I had to choose which sick kid to be with, I never want to have to make that choice ever again.  I was told in EMERG that he had a prolapsed bowel, off to the IWK the following day to see a bowel specialist and testing for CF.  Apparently this can show up in patients with Cystic Fibrosis.  I was so thankful that the sweat test (to test for CF) came back negative but now I was taking Zack to regular IWK appointments to see Dr. Blake and a bowel specialist.  He was now taking a drug called Peg 3350, truly a miracle drug for his issues.  I felt between the two of them we spent more time at the IWK, for appointments, then we did at home.

Through all this I continued to study, caring for my kids pretty much on my own due to my Ex's work and at this point my marriage fell apart. I have absolutely no help of any kind here in Nova Scotia as all my biological family live in Quebec and Ontario.  (I do have a foster family here in Nova Scotia but we don't see much of one another)   I was on my own so I finished school and the kids and I moved to the city. I very quickly created a network of friends who to this day I call my family and would bend over backwards to help them.  I started working at our adult hospital on a casual basis and my fascination and amazement at how all that is wrong with the body can almost always be found through a blood test was born. I love my job and miss it everyday...now that I'm off.

There were many sick calls at my new job as Haley's illnesses continued.  However, now there seemed to be a gap in between them, finally small breaks where she was healthy.  In 2009 the H1N1 scare hit Nova Scotia.  As a health care worker we were given the vaccine early to prevent us from getting sick.  I remember saying to a co-worker I have to get this vaccine, if I bring this home to Haley it will kill her.  And kill her it almost did.  She fell ill on a Thursday night, I will never forget this. Like any other time she awoke with a high fever she would come and crawl into bed with me but this time she was in horrible pain, complaining that her back hurt.  Through every chest infection she's had I've never heard this child complain of pain.  By Sunday we had been admitted to hospital with the confirmation through nasal fluid testing that she did indeed have H1N1.  7 Days later we were in PICU having a chest tube inserted, her plural cavity on the left side had completely filled with fluid.  There was no air entry in her left lung, her kidneys were not working properly, blood work every 4 hours, pneumonia from the H1N1, then bacterial pneumonia on top of that, and a constant fever, that by the end of this horrific illness, lasted over 14 days.  It was by far the scariest time in my life, I was helpless and at the mercy of health care professional who were learning as they went along due to the unknown characteristic of this illness. Haley's Dad took time off work to be with Zack and us.  He would drop Zack off at school and come into the hospital for the day until it was time to pick him up again.  He would bring me food and sit with her while I used the "family" shower down the hall.  I felt even being away from her for that 20 minutes was too long. Thank God Todd's work was very understanding giving him the time off he needed.  After two weeks in hospital she pulled through but, it took a couple of months of recovery before she was back to her normal self.  During this time I can't even begin to say enough about my amazing co-workers, my employer, my friends and family who helped us get though it.

We've had the "normal Haley illness" sudden onset of fevers, chest infections, sinus etc since then but nothing as scary as H1N1.  She has annual check ups with her Immunologist, who confirm year after year that her immune system is just not the same as others.  She's a fighter like her mom and oddly enough she has only been really sick 4 or 5 times in the past 12 months.  Like I've said in a past blog, one at a time in this house.

I'm Happy to report that other then a tonsillectomy from too many strep throats when Zack was 7, he is a healthy 10 year old now.

I'm blessed on this mothers day to be able to reflect back on all my hard work.  I have two AMAZING kids who "get it" because they've had to.  They are not whinny or sulky, they are caring and kind all because life threw them some curve balls.  They have a Mother who through all of this crazy madness never gave up, or gave in.  I've taught them to embrace it all and keep going.  Life is not easy, it's not supposed to be, but together we have proven that we can get through anything.  Now that the tables have turned somewhat and I'm the sick one, I have no doubt in my mind they will be by my side every step of the way, we have created an unbreakable bond.

It's time for the Healing Machine

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

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