Wednesday, 23 April 2014

"My Parents"

If I've made one thing obvious through my writing, it would definitely be how important my family and friends are to me.  They have been my support system, my shoulder to cry on, they've been there to catch me when I fall...and every other cheesy cliche you can think of that might describe the friendship and love they've shown.  When the going gets tough, I could not be surrounded by a better group of people.
This was extremely difficult to narrow down being that everyone has been so supportive, but I have asked my immediate family and two of my closest friends to share their perspectives on my journey with a brain tumour.  It's hard to describe each of these people in few words, and nothing I say could possibly do them justice, but I've labelled them each with something they've been for me.

Due to everyone's very busy and different schedules, I've decided to make this into a series of blogs.
1. My Parents
2. My Friends
3. My Siblings
Some of these were written some time ago, and others just recently so although I may not post them sequentially, I hope everyone reading finds inspiration in the words of my loved ones. 

DAD-My Inspiration--The one who always inspires me to make a difference, no matter what the circumstance. 
"Jane has asked me to comment as a father on the affect her tumour has had on me.  So, I'm sitting in the parking lot as Jane and her mom are in the doctors office having her stitches removed and trying to convey on paper how this ordeal has changed our lives. We're always rushing to do this or do that, but when you are sitting in the hospital waiting room for five hours while you youngest child is having brain surgery, you reflect on a lot of things and think of the worst possible outcome.  Five hours seems like five days and you don't want to rush anywhere but to be by their side and not let them out of your sight. Now there is only one priority "family "; everything else can simply wait."

MOM-My Caretaker--The most nurturing/loving woman I know.  She's always putting my needs ahead of her own (even though I can be a little diva-esque at times).
"I could say that finding out about Janie's tumor was so stunning that my world stopped spinning for a minute, that there was definitely some sort of mistake or that it was a terrible joke. This is my baby after all, these things literally only happen to "other" people.
I could say that I didn't want to let her out of my sight in case of any tumor inducing side effects and that in spite of having a loving close family and great supportive friends that I felt more lonely and frightened than I have ever felt before in my life. I could say that there was frustration, even anger that the neurosurgeon had the nerve to take a vacation while we awaited a date for surgery.  
I could say that all of our emotions were heightened and sometimes downright illogical and at odds with actual events in our day to day lives.
I could say that I became aware of all the love around us and that I would switch places with Janie in a heart beat...and that I could never get through this without my rock of a husband, loving sons and tremendously brave daughter. I will however say; Jane's journey is long, tiring, painful, and not pretty! During her recovery I look back and am so proud of the grace, dignity, poise and sense of humour that my daughter has shown!  

I will say that life will be a beautiful thing once again!"


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Sunday, 13 April 2014

Specialty Diagnosis

I know, I know...I kind of fell off the radar for a while, but for those that have been asking, I assure you all that I am well.  Life has gotten a little more exciting since I've been able to travel beyond a stone's throw of my bed! Recovery is going swimmingly, and with each day comes progress and optimism.  I am now able to do things on my own (or at least I would if I didn't have to rely on my mother to drive me everywhere).  Overall, life is good.

At the end of March, I went back to see my surgeon for the first time since my craniotomy in January.  Let me take you back to that day.  The morning started out with a CT scan.  When you frequent the diagnostic imaging department at the hospital this becomes routine...you know the run-down before you show up, so you can basically skip Step One: the instructional lecture from the nurse; "remove any jewellery or metal from the area being scanned, if you have buttons, zippers, or an underwire in your bra please remove your clothing and slip into one of our ultra fashionable hospital gowns (if Kim Kardashian can make it work, you can too...right?)".
Kim K is happy to be in that gown. 
Step Two: The nurse ties off your arm, searches for the most "sticky-outy" vein, promises "you'll just feel a little poke", and inserts the IV (I'm pretty much immune to this poke at this point).  This next part is my favourite.  The nurse then flushes some weird yellow dye into your veins and warns you that "you may taste metal in your mouth and feel a warm sensation between your legs as if you're wetting your pants", you are then told not to worry because you are probably not actually peeing your pants.  Very reassuring.

When I was done at diagnostic imaging for the day, I was off to the surgeon's office where the images from my CT scan were already waiting...and yes, believe it, it is actually possible for hospitals to be efficient and prompt under the right circumstances. 
My surgeon made the ever-so-slightly obvious observation that I had gotten a haircut and tried to crack a few jokes in hindsight of having a brain tumour, but it's a good thing he's intelligent, because for some reason I imagine that "funny" and "good sense of humour" would not be first on his list of personality traits.

If you've been following my journey from the beginning, you know that I was initially diagnosed with a non-malignant tumour called a Meningioma.  Although the doctors seemed pretty confident in their diagnosis, they also inform you that there is no way for them to be 100% sure until you're knocked out and they're rummaging around inside your skull. Once again, very reassuring; so...my only option was to take it all with a grain of salt.  Now, I like to maintain a certain degree of excitement in my life...so, naturally, the pathology results of my tumour did not lack shock value. Just as I was getting comfortable with the pronunciation of Meningioma, 

I was forced to learn a bigger, scarier word: my new diagnosis. Hemangiopericytoma (say that 10 times, fast!).  

This new diagnosis, luckily, is still classified as non-malignant, but makes up for less than 1% of all Central Nervous System tumours...I knew I was special!!  However, having a "special" diagnosis only really means that the research on this type of tumour has been minimal and there was very little information that even the surgeon could give me about it; so I'll let you in on all I know...
I thought I was rid of this thing for once and for all when the surgeon announced that he was able to remove all of it, but here comes that shock value again...there's somewhere around a 90% chance that my archenemy and I will meet again somewhere down the road, and a possible chance of it metastasizing (a.k.a. spreading or growing {it's okay, I googled the definition too}).

I'll be back at the hospital for regular MRIs to monitor any unwanted growth.  I'm in good hands and will continue to keep my head up. I've conquered this thing once, I'm determined to do it again if need be.

Now, here comes my shameless plug for a charity that has become so important to me in the last 8 months.
On May 3rd, 2014, my family and I are participating in the Spring Sprint for the Brain Tumour Foundation of Canada.  Any and all donations make a difference.  To sponsor us and the BTFC, you can click here.

(We'll be participating at the Kitchener-Waterloo event)

I know what it's like to be one of the 27 Canadians that gets diagnosed with a brain tumour daily.  Donate in memory or honour of those who have had stories similar to mine.