Saturday, June 29, 2013

Having A Brain Tumour is Good For Something

There are things that come along with recovering from brain surgery that turn out OK when you look at it with the right attitude.  For example, we have a hummingbird, well actually I think we have two.  I've had hummingbird feeders in the past, I think I fed them, the liquid disappeared and I would see them every now and then.  However, now I know for sure that I'm feeding them as I've had the pleasure of watching them over the past few days.  Amazingly they are not afraid at all.  Zack and I stood on the deck patiently waiting for him to return.  He flew right up to Zack's chest, as he was wearing a shirt with bright red on it and hovered there, scooted over to me and realized I was not food, then to the feeder.  He zoomed off and Zack and I looked at each other in amazement at how totally cool that experience was.  I'm now addicted and love watching him.  If I wasn't recovering from brain surgery I wouldn't have the time to sit patiently and wait for them to come and eat.

Another thing that's alright is the fact that even though we've had very little sun, on the nice days I can sit on my deck for short periods of time.  The heat and my head DO NOT get along if I'm trying to do something like weed my garden.  However, if I'm just sitting there drinking a tea I do ok.  The advantage......for the first time in many years I have "kind of" tanned legs.  This is a miracle for an overly white chick like myself, you don't get much whiter then this blonde haired blue eyed girl.  The only other time I have been able to achieve a tan is through tanning beds and I don't do that anymore.  I'm sure that most people would still think of my legs as not being tanned, but they are not the colour of Elmers white glue at the moment so that's cool.

Finally, I've realized in the last two days that I can't beat this thing.  It's bigger then me.  This doesn't mean I'm giving up, in fact the complete opposite.  It means that finally I've surrendered to the fact that recovery is in my hands and by "over doing it" I'm prolonging the recovery process, 1 step forward, 20 steps back.  Although I think I can do anything, I wouldn't be so stupid to fight a lion or a bear, so why fight this?  So no more pretending I'm better then I am, rest when my body tells me to and stop beating myself up over the fact that I'm not in control.   If I can sit patiently for a hummingbird to return to the feeder, then I can do the same for myself and my brain.

Friday, June 28, 2013


Have you ever been so proud of your kids that you could just burst?  I'm always proud of my kids but sometimes something extra special comes along that makes you say "Ya, that's my kid"  This week my son, Zack, was presented with an award that recognizes a grade 5 student who shares Mr. Pickup's (a past Principal) qualities of kindness & Caring, exhibits a keen sense of Humour and is a Creative Thinker.  How cool is that?  This, for sure, is my son.  A calm child who is always thinking, a spiritual being with a sensitive side, loving and funny.  I'd say that's a great way to end Elementary school.

The week also involved a trip to the Balance and Dizziness Centre, (B&DC) where I was told that I was improving but to stop over doing it.  After keeping a journal of what was causing my unsteadiness, balance issues and my "two step stumble" (this is when it looks like I'm drunk and going down for the count but I always catch myself) it appears that these are increased by increased activity.  I told my Physio that the increase in meds has worked, shocks have subsided. She was quick to point out that even when I was not on the meds last year I had periods of intense shocks and periods of when the Trigeminal Neuralgia was "in remission"  So continue with the symptom journal.  Hmmmmm, now I have my Physio and T Jay both telling me to stop over doing it.  In case you haven't figured it out, I am a wee bit stubborn.  I can listen when I want to but tend to do things anyway.  Yesterday for example after returning by cab (still not driving) from the B&DC I fed the kids lunch and for the first time since my surgery, we took Metro Transit.  Now, honestly we didn't go far, just about 5 minutes up the road to the first little strip mall in the Shopping Park.  They were so excited, the bus and we get out of the house.  I have to admit I was feeling a sense of independence myself.  I don't really know too much about the buses other then the fact that   a transfer is good for 90 minutes.  Ok kids you have 90 minutes to shop.   My son got the game he wanted and a new set of cool head phones.  My daughter and her friend...clothes and more clothes.  Everyone did great and we realized on our way back that the bus is a fantastic people watching experience.  I have a friend who writes about her bus adventures on her FB.  It's always funny and now I can see why.  Good times.  So I was feeling great about the day. We got out of the house and now I was showing my kids the pictures I put up on FB of them and how proud I was of all that they do.  Then BAM!!!!  A shock, to what felt like the bone under my eye (the eye with no feeling).  If you have seen me get a shock prior to surgery you will know that your face muscles actually contract with the zapping.  Since I have no feeling to that side of my face it felt like a constant pain even though I could sense my face contracting.  It wouldn't stop and hung on for a least 10 seconds.  Doesn't sound like a long time but to have this intense of a pain for that long is horrific.  I was starting to panic, when it finally stopped all I could feel was an intense numbness and and tingle in my lip.  Are you Freaking kidding me!!!!  Enough Enough ENOUGH!!!  Here was T Jay's opportunity to speak to me about "over doing it", the same thing I heard that morning.  Ugh, Ok, I get it.

Today has been a day of feeling numb, tingly and pains in my face.  It wears me out to an exhaustion that is unmeasurable, but I trudge on because today is a happy day.  The day when you are again the most proud of your kids, grading day.  My kids are excellent students and amazing human beings.  I'm grateful to have two well balanced, smart "middle schoolers" in my life.  What better way to celebrate grading into grade 6 and 8?  Pie, Cherry Cream Cheese Pie, because Pi is part of life's full circle and yummy.  

Sunday, June 23, 2013

16 to 41 in 12 Hours :)

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

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

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

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

Saturday, June 22, 2013

Obviously It's Not So Obvious

So it has to be said, I can't hold it in any longer, I'm going to explode, burst really if I don't get this rant goes:

I'm currently off work, obviously, this is NOT my choice.  Would I rather be working?  YES!!!  I miss my co-workers, I miss the life that comes with working, I miss the patients and I miss feeling like I'm helping people, even if society thinks that all we do all day is "just take your blood" (you have no idea it is SO much more then that, but that's a totally different rant)

I can't drive, obviously, this is NOT my choice.  I can't get my kids to their activities, I can't get groceries, I own a car and it sits there, I can't just get in and go for a drive because I need to clear my head.  Do I miss driving?  YES!!  Do I feel like my independence has been striped away from me?  YES!!

I can't get half as much accomplished in a day as I use to, obviously, this is NOT my choice. Brains are funny things, they control EVERYTHING and when it decides that it's tired and wants to stop, guess what?  You have to follow it's lead.  The things that everyone takes for granted (like carrying a basket of laundry, climbing a flight of stairs, standing for a long period of time to cook super) are all things that take effort.  Effort, makes me exhausted.  Do I want to be able to do all things that I too took for granted with ease?  YES!!

If one more person makes a comment about taking my kids to Cuba I'm going to scream.  Finding out that I have a brain tumour and required surgery AFTER I already booked my kids Christmas present was obviously, NOT my choice.  Do you honestly think I would have booked a trip if I knew I was going to get diagnosed with a brain tumour?  NO!!!  Do you know that I thought I would be back to work in plenty of time to take my vacation in April with my kids? YES!!!   I was planning on being back to work the second week of February, just like the Doctors told me before I had my surgery.  Do you think I wanted damaged nerves in my brain so I could no longer feel the right side of my face and head?  NO!!  Do you think I like 4th cranial nerve palsy so I can't see without prisms?  NO!!  Do I fault anyone for this?  NO!!!  It was all part of the risks and I knew them, I just didn't think that it would happen to me.  Do I sound angry that I'm not the same person who was wheeled into the operating room?   YES!!  Do I realize it could have been a much worse outcome?  YES of course I do!!!  This however, is MY reality and I deal with it everyday which brings me to my final point...

I have no plans for the Summer, in fact I have no plans for each day.  Obviously, this is NOT my choice!!!  Would I love to be going camping with the kids or driving to the beach, riding my bike on the trail or hiking my favorite spots?  YES!!!  My daily activities are just that, daily, each day is different, the only thing that I know for sure that is happening is recovery.  That's my plan for the summer, RECOVER, that's what I do all day....RECOVER.

I'm not asking for "a hang in there" or you can do it", obviously if I have a strong enough spirit and mind (perhaps even tongue) that I can write this then I know it's possible.  I'm asking you to think about what you say to people before you say it.  I once said to a blind person "you should see this"  What was I thinking?  Obviously I wasn't.  We as humans think we understand each other's spirit because we have one of our own but everyone is in a different place at different times.  Respect that, it's the lesson I'm learning and obviously one I hoping to teach.

Thursday, June 20, 2013

Super Sloth

I now can make it two days without an afternoon nap.  That's if I've been pretty low key.  Since we had a few nice days I've been doing little things in my back yard.  I think they broke my heat regulator when they were poking around in my brain because I spent the Winter freezing (but chalked that up to inactivity) and now I'm overheating this summer.  Every little thing I do causes me to over heat, get dizzy and my face turns purple.  It's not a pretty look.  One day of this, equals one afternoon in bed.  (Sigh)...I know that I am beyond fortunate however, I finally figured out that I went from Superwoman to Super sloth.  Have you ever watched a Sloth?  Here's some interesting facts about Sloths, it's amazing just how "sloth-like" I am:

Sloths are slow moving Mammals that live in trees
I'm a slow moving mammal that lives in a house built from trees.
Sloths have a thick brown (sometimes greenish) fur coat.
I used to own a thick brown fake fur coat.
Sloths have short flat heads, big eyes, a short snout, a short or non-existent tail, long legs and tiny ears.
I have a small head that's flat on the back, normal eyes, a short stubby snout, a non-existent tail, sadly, short legs, and I too have very tiny ears.
Sloths eat, sleep, mate, and give birth hanging upside down from trees.
umm what?  why?...must be the difference between the long and the short legs.

Ok you get the idea, move like a sloth, speed of a turtle and balance of a drunk.  They say acceptance is a powerful thing.  I haven't accepted any of this, might be willing to agree with it but no where close to acceptance.  I'm trying to find the humour side of me again,  I lost that in the last few months.  Caught up in appointments and overwhelming information, I forgot I'm supposed to be living, not just existing. It's the figuring out how to live with the existing brain tumour that's the problem.

Even as a Sloth I'm Mighty

Sunday, June 16, 2013

Father's Day

Today is the day I hated for years.  The kid in elementary school who didn't have a Father.  I always made a card and gave it to my Uncle, who was the closest thing I had to a Dad in my young life.  It was weird and awkward and a feeling I remember to this day.

A Step Father entered our life who turned out to be an abusive jerk.  He spent years torturing my sister and I and without airing all of my dirty laundry, I am happy to report that he did spent a few years in Jail for his act and is now unhappily rotting in Hell.

This began my time of hating Men.  And as blessed as I was to have an amazing Foster Family, there was very little trust in my Foster Dad.  At 15 all men are the same aren't they?  Months past, even a year and I began to realize that maybe he wasn't so bad. Maybe I can trust him.  I didn't hate him by any means, I just always had one eye on him.  When I figured out that I was treated the same as all the other kids in the house I began to loosen up.  I was helped with homework (especially math), I was grounded when I missed curfew just like the other kids, hmm maybe he does have MY best interest in mind.  My guard came down a little, and began liking the idea that I had a trust worthy Father figure in my life.

My time in Foster care was short, just 5 years, but the lessons and values I learned about life during that short time have molded my character to a person that I like.  My life would be very different without their love and support.  I have to this day a great relationship with my Foster Dad.  Thanks John for being a positive influence, a continued voice of support and an overall cool guy.

So Happy Father's Day to my awesome Foster Dad and also to my Ex Husband Todd, who gave me the two most precious human beings I know, my kids.

Friday, June 14, 2013

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.  :)

Thursday, June 13, 2013


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

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

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

Monday, June 10, 2013

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.

Sunday, June 9, 2013

Garden Love

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

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

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

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