Home Free

It's been a month now since my operation; since I don't exactly have the most exciting social schedule, I have no excuse as to why I haven't yet shared the "at home" portion of my recovery.  So, since I know you're all at the edge of your seats...here it is.

"You're ready to go home today"; just like that they say the words and all of a sudden you feel like one of the doves that Jasmine has just set free from the palace courtyard in Disney's Aladdin. (Although in my case, I can't yet move as swiftly/gracefully as those doves...but give it some time).

I thought the bliss would begin the moment I took my first breath of fresh air outside the hospital walls, but what I forgot, was that I still had to endure a long car ride home...up the escarpment.  Let me tell you: brain surgery, bumpy highways, and the changing air pressure that goes hand-in-hand with the inclining escarpment do not mix.  In fact, if there was ever a moment in which I was sure my head was going to explode...that would've been it! Nevertheless, I made it home to my bed, where I was bound indefinitely.  As I lay here (surprised I haven't developed bed sores), I start to understand how Brian Wilson must have felt.  If you're not sure what I mean, the Bare Naked Ladies will help you out...

Recovering at home is the only time it's acceptable to stay in bed when visitors come over; there's no obligation to get up for work or school, your room starts to look like a florist shop with all the flower arrangements people bring, you're showered with gifts and cards (by the way, thank you to everyone who contributed to this), and all your meals and snacks are pretty much spoon fed to you. Sounds luxurious, right? Yeah, I thought so too...or, I did for the first week.  Soon enough you start to realize that you are pretty much helpless...
For the first little bit, I had pretty much reverted back to babyhood.  I needed help bathing (which is not quite the same as it was when I was a baby...I'm sure my mom will concur), I needed someone to hold my arm if I wanted to walk up or down the stairs, and I couldn't leave the house unless I was walking across the street to get the mail, and even then I needed a family member as a crutch.  Thankfully, I am now able to shower on my own (seriously, this is a luxury! Don't forget that), and this week I was able to walk across the street alone, walk around the mall, and go out for lunch with friends!  However, despite the progress I've been making, there are still some things I try to use to my advantage; example: when I Facebook chat my mom from across the house asking her to bring me my medication, just because I'd rather not do it on my own, or when I refuse to do dishes because "I get weak if I stand too long".  Some of the best advice I've been giving through my recovery has been "milk it as long as you can", which of course I plan to do.  BUT, When it's all said and done, my mom deserves the BIGGEST round of applause for staying home and being my personal 24/7 nurse, and always being so caring! I love you, Mom! :)

On another note, considering my immobility and my ability to fall asleep at the drop of a hat, my days at home have actually been pretty busy.  I've been trying to photo document as much of my experience as possible so I can look back on the hard times and be thankful for the good. This is just a small preview of what's been going on.

My first night home/My first time seeing the surgeon's masterpiece 

Lots of cuddles with my pups

LOTS of tasty treats

My first time holding beautiful baby Leighton (born the same day as my Craniotomy)

Gifts to exercise my brain & Gifts to rot my brain

Playing hide & seek

 
Allowing my brothers to cut my hair and being allowed to cut one of theirs in return! 

I can't wait to see what's in store for me next and what excitement it will bring!! :)

The Real Deal

My blog today is going to be a little more formal than usual, but I wanted to provide a deeper insight to some of the things I've faced.

For those of you that have been following my blog since I started it a few weeks ago, you know that it's in my nature to poke fun at anything that has an inch to poke, but I think it's important you know that what I'm going through is not all sunshine and rainbows.  I know many of you have gone or are going through situations that can be equated to mine, and I want to convey the message that it's okay not to be strong all the time.
Everyone has a different way of coping with their struggles; my strength comes my friends and family, and my writing, and it is portrayed through the dry humour in my blog, but there are days that I, too, falter.
I have a knack at making my journey sound easy, when in reality, it has been far from it.

After my diagnosis, my family and I decided it was a good idea to get a second opinion on my case from another Neurosurgeon, just to make sure surgery was the best choice for me.  A week before my surgery, the results of that second opinion came back.  After being told by my physician, and my surgeon, that my Meningioma tumour was slow growing (or possibly not growing at all), I was told by the second surgeon that my tumour had indeed grown.  What started out as a mass with a 3.3cm diameter, had grown to 4cm in three months.  The first surgeon gave me the choice to have it removed or not, the second urged that I have it removed immediately, based on the slight possibility that it was Mesenchymal Chondrosarcoma (a rare, often aggressive form of bone cancer).  After being so sure that my tumour was nothing serious, you can imagine my shock.  I read the news while at the Air Canada Center watching the Toronto Raptors take on the Minnesota Timberwolves, and you can bet, it was difficult to concentrate on the remainder of the game.

Thankfully, the surgery went smoothly, and there has been no news from the biopsy (no news is good news!), but the complications came after surgery.  One day, while in the hospital, my stomach started to twitch on the right side of my body (the side controlled by the portion of my brain that had just been operated on).  This happened again, and thinking it was just a muscle spasm, I informed my nurse anyways.  The surgeon came in later that day to break the news; what I was experiencing were myoclonic seizures.  I was put on a medication for epilepsy that I will now have to take twice a day, for possibly the next six months.  This medication disables me from driving for as long as I'm on it, causes extreme fatigue, and weakens the liver.  Only once my surgeon is confident that the seizure activity has subsided for good, will I be take off the medication. These seizures are not normal, but not extremely surprising given the fact that my brain had been un-routinely irritated by the surgery.  Once again, one of those things you think could never happen to you.

Early this weak, I had my sutures removed by my family physician; with some irritation and redness, and one large scar across the back of my head, I was sent home.  Until that scar is healed completely, infection will remain a concern (on the surface of the incision, and in the brain).  In the case of infection, there is a possible risk of a blood clot causing a stroke, an aneurysm, or possible paralysis.  I joke that having no hair is low maintenance, but the aftermath of brain surgery is not. Worrying about how to prevent infection is basically a full time job, and even without stitches, the pain of the incision is real and there is no comfortable way to lie down, making some nights (despite the medication) impossible to fall asleep. So, eliminating the tumour did not eliminate the inconvenience, or the worry.

I'm not seeking sympathy, but the reality is something that I don't always share. These are only a few of the hardships I have encountered, and I'm sure there will be more as I get closer to the end of this road to recovery.  It sounds cliche, but what you need to remember is that the journey is just as significant as the destination itself; you can't reach the end without hitting all the bumps on the way.
There is no insignificant moment when dealing with something like this...

I've been told on countless occasions how strong I am.  I remain positive for my own sake as well as the sake of those around me, but if you think for a moment that I haven't been scared, or felt defeated, or cried...you're wrong.

You're not human if you don't have moments of weakness.

xxoo

(Hospital)ity

Truth be told, I've been home from the hospital for about a week, but you'll have to excuse my slack.  Between the combination of painkillers and narcotics I've been prescribed, and the fact that I just had brain surgery, it's been difficult for me to keep my eyes open long enough to write more than a few words at a time. But, here I am now to give you the glamourous insider edition of what my experience in the hospital was like. 

As you can imagine, being in the hospital for an extended period of time (or any time at all, actually) is less than pleasant, but I can honestly say, with a few minor exceptions, that my surgeon and his team, my nurses, and the rest of the crew that helped me out during my stay made my time bearable.

Firstly, going into the O.R. and finding out that my head Anesthetist had an Austrian accent and sounded just like Arnie almost made me fist pump from my stretcher, and (not a word of a lie) the last thing I remember before being put to sleep was him saying in that accent, "it's not a tumour" (refer to the video clip from Kindergarten Cop in my first blog).
Next came waking up in the recovery room.  If you've never had surgery, it feels just like a scene from Grey's Anatomy (unfortunately the doctors don't all look like McDreamy); I open my eyes for the first time to see the entire medical team looking down on me, I'm overwhelmed with questions being thrown at me to make sure they didn't hit the wrong parts of the brain while they were in there, and my throat is so dry from the breathing tube they had down it that I could probably drink a small lake. They told me to relax, but relaxing just isn't in my nature, plus I had just been out for the last 5 hours while they poked and prodded at my brain, I really had no idea what was going on or what was going to happen next; so naturally, I chimed in on the nurses' conversation about their upcoming vacation to Jamaica, seeing as I had been there and thought I could shed some light on where to go and what to do...now I realize that my own lights were hardly even turned on...

The best part of being in the hospital was probably the VIP treatment (though far from a five star hotel). They feed you, they clothe you, they hydrate you, they provide you with bathroom facilities, and they make sure you're bathed. That being said, the food tastes like cardboard, the clothes are far from designer, your hydration is provided to you via IV, the bathroom consisted of an uncomfortable bag that gets changed every so often (I'll spare you the details), and the baths you get are of the sponge variety requiring you to stay in your bed and remove your gown while a total stranger slops an excessive amount soap on every inch of your body your and dries its all off at the end.  To some, never leaving your bed and being waited on hand and foot sounds like THE life, but I doubt this is what they have in mind. 

The Neuro ward is a small wing of the hospital that cares for anyone who has recently had brain or spinal surgery (or who is awaiting brain or spinal surgery).  Many of their patients are much worse off than myself so the fact that I was young, that my tumour was benign, that both sides of my body were still moving in tandem, and that I was walking on my own, seemed to be a great relief for the care team (even if I was walking like a newborn giraffe).  Without gloating, for once in my life, I can say that I was by far the lowest maintenance one of the bunch (I know...can you possibly imagine??).  

During my stay in the Neuro ward (5 days), I occupied three different rooms (4 if you count the time I spent on my bed in the hallway waiting for my next room to be ready), and had the amusement, nay, the delight of sharing these rooms with a number of "roommates".  Let me just clear the air, when I say roommates, I don't mean the kind you choose to live with in college, or the fun kind that are assigned to your cabin at summer camp...these are the ones that make you look forward to moving out! One man wandered into other rooms at night so the nurses would have to yell at him, "George, you can't go in there", and put signs on the ward doors that read: Keep Doors Closer: Wandering Patient., one seemed nice, until her husband came in and complained that my visitors and I were TOO LOUD!, the same one was later examined by the infectious disease unit, which is comforting when you're living in close quarters, and last but certainly not least, one was quiet by day but turned into The Great Flatulator by night, and I'll tell you, he was not intending to help me get a restful sleep. 

As I mentioned already, I had some really good nurses, and I cannot voice my respect for people that have the patience to do the job that they do, but they sure help to make the experience, errr...entertaining?. My first night, I had a male nurse that was timid to remove my bandages, always asked me "is this okay" when referring to the dosage of my painkillers (If I knew what was okay, I would be the nurse!), and he always made sure I was in good supply of "lip gloss" (he meant chapstick, assuming my lips were dry from dehydration).  A few nights later I lie awake in my bed listening to a group of young nurses outside my door, in between tending to patients, discussing the trivial matter of why Justin Bieber and Amanda Bynes went crazy, but Ryan Gosling did not, even though he, too, was a child star. Solution: more young celebrities just need to start using Ryan Gosling as a role model... 

Overall, I was treated very well while I was in the hospital, I'm not too deeply scarred by the experience, my tumour was COMPLETELY removed, and my recovery is on the fast track :) I am truly, truly blessed!! 

In risk of sounding like a broken record, I have to acknowledge the support I was shown while at the hospital: the friends and family that came to visit, the phone calls, emails, and social media posts, and the people that sent flowers, cards and/or gifts.  

I can't leave you all for the night without some sort of inspiration, so, nothing seemed more appropriate than for my alter-ego (2-Janez) to quote my brother Mike, quoting the Wu-Tang Clan: 

"Ain't nothin' but a G thang baby!"

Make a Difference!

com-mu-ni-ty

kəˈmyo͞onitē/

noun

1. A feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals.

friend-ship

ˈfrendˌSHip/

noun

1. The emotions or conduct of friends; the state of being friends.

synonyms: relationship, attachment, association, bond, tie, link, union

1. • noun

Tomorrow at this time (if everything goes as planned), I'll be waking up in the Hamilton General recovery room, most likely slightly dazed and confused, but nonetheless...TUMOR FREE!  I definitely had my doubts about sharing my story but after a lot of skepticism and some coaxing, I am SO  glad that I did.  Since starting my blog, I have received an overwhelming response from friends (old and new) and family, I have been reached out to by complete strangers who have similar stories of their own or who just want to send well wishes, I have been cheered on by co-workers, and most of all, I have gained an entirely new sense of friendship and community. It has taken something like this to open my eyes to all the love, support, and generosity that surrounds me every single day!

So, here I sit in my hotel room with weird Cheerios stuck all over my face and neck in preparation for surgery, eagerly awaiting 6am tomorrow morning, looking at all the Facebook, Instagram, and Twitter shoutouts I've gotten today alone, and feeling like one lucky girl!

I spoke with a friend last night who has recently undergone some struggles of his own; after hearing his story and being unable to fathom his hardships, I took note of his incredible ability to hold his head high and continue radiating positivity.  He said something to me that I wanted to share: 

"I think this part of our lives is important; how we evade it, how we succumb to it, how we deal with it, and how we transcend it".

He was absolutely right in saying so.  All of your experiences (especially the hardest ones) become a part of who you are and how you choose to react to them makes all the difference in the world!  

Ever since I was little, before every basketball game, my Dad would tell me to make a difference; I've since decided to stop playing ball based on the fact that my motivation to go to practice, on a scale from 1 to 10, fell somewhere in the negatives, but I continue to tell my Dad to make a difference every Tuesday night before he hits the ice to defend the net for his Oldtimer hockey team.  Now, each one of you has made a difference to me if even just by reading this, and if I have in any way inspired just one person to stay positive through tough times then I have done my job!  I now want to share the same advice with you. Strive to make a difference in everything you do and I promise it won't go unnoticed!    

As it may be evident by the jumbled structure of this blog, there are so many things I want to say...so many stories I want to share, but with the chaos that is my brain right now (in both the physical and mental sense) it's hard to organize my thoughts, but I'll leave you with a few 'Janeisms' that you can look back on when life kicks you around:

• ALWAYS strive to make a difference
• ALWAYS keep your head up
• LIVE everyday as if it's your last 
• LOVE unconditionally 
• CHERISH everyone and everything you've got 
• NEVER take life for granted

I can't wait to fill you all in and get back at it once this is all said and done. Take a good look ya'll; this may be the last time you see me with a full head of hair (and less noticeably, a tumor)!! Catch ya on the flip side.

Over & Out ;)

xox

The Ups and Downs of Being Bald

Based on a recent (American) study done by Stanford University's Cancer institute, more than 196,000 people in the United States are diagnosed with a new brain tumor every year.  Seventy-five percent of those tumors are benign (not cancerous), the other twenty-five percent are malignant...I am EXTREMELY fortunate to be a part of the seventy-five percent that is not battling a cancerous tumor.  

Although I probably won't have to endure radiation, I am still having an operation to have the beast removed (or at least as much of it as possible).  Based on the size of the tumor, the operation will consist of the surgeon making a fairly large incision in my head, (and if you haven't already put it together from the title of this blog) this will result in me having an awkward shaped bald spot on the top of my head.  Because of the location of the tumor, this isn't something I will be able to cover with ease...so, as much as I would love to channel my inner pop star, it's just not going to work that way.  

Ellie Goulding

Ke$ha

Rihanna

After coming to the conclusion that my new 'haircut' isn't exactly going to be a stylish one, I've decided to say goodbye to my luscious locks completely (this will come after the operation).  When shaving my head comes up in conversation, there's no doubt that it freaks people out; I've always been one to have long hair and the change will be drastic, bar none.  It has even seemed that some people are more concerned about how I'm going to cope with having no hair than with the actual tumor.  With this being said, I realize that now is no time to be vain, and I can't stress enough how lucky I am that my hair will be all I lose through this journey; my health is leaps and bounds above my aesthetics on the priority list!! 

After many a conversation, I've put together a list of 'pros & cons' based solely on things my friends and family have said. Here it goes...

 CONS

-This is going to take a long time to get used to, so I may have a hard time looking in the mirror for a while. (I'm not sure how I'll spend my free time now...)

-It's going to seem A LOT colder than usual. (This is disconcerting considering my body temperatures are already that of a cold blooded reptile)

-I'm going to realize that the shape of my head, which I've always thought to be pretty normal, probably resembles the topography of Sri Lanka (or some other place that has a lot of hills and valleys).

-I'll probably resemble my brothers more than I would ever actually want to (no offense, guys..you really are great looking people)

PROS

-"If she can do it, so can you"

This was sent to me by a friend; although this picture is clearly photo shopped, and I've seen Jennifer Aniston look better, his heart was in the right place.

-There are all sorts of new hairstyles I can try once it starts to grow back
(below are some of the ideas suggested by friends)

-I'll look like Natalie Portman in V for Vendetta (wishful thinking, but we have the same beauty mark on our left cheek, and she ROCKS the shaved head).

-It will take me significantly less time to get ready and it'll be super low maintenance. (At first, at least)

AND

-I can finally be friends with Mother Nature without worrying how her shenanigans will affect the well-being of my hair. 

Overall, the optimist in me says that the pros definitely outweigh the cons, but like any situation, the cons are still going to exist; So, in the wise words of Jay-Z, "take the good with the bad, don't throw the baby out with the bath water".  

My Meninges

In 2013, I laughed until my stomach was sore, I danced until I couldn't feel my feet, I drank until threw up (don't  judge, I know you've been there), I rekindled friendships and started new ones, and I learned a lot about myself…but like any other year, it had some low points.

One day, late July, I had planned to meet some friends at a Jays game; after about an hour of driving through typical rush hour traffic, I found myself sitting on the side of the Gardiner Expressway sporting my brand new Jays shirt, watching a road crew clean up the ruins of the accident that had  just left my poor Chevy Malibu smooshed against the guard rail, and waiting for the emergency vehicles to arrive at the scene.  Luckily, the 3-car demolition derby didn't cause any physical damage to the people involved, so as always, Super Dad was there in a flash to rescue me (despite the interruption to his afternoon golf game). Needless to say, I missed the game.

The next day, I went to the hospital with shooting pains in my neck and was told  that I had whiplash and inflammation in my neck.  After lots of physio and massage therapy, my headaches (thought to be from the inflammation) were not going  away, so, back to the doctor I went.  A CT scan was scheduled and the doc sent me off with the encouraging words "I'm sure they won't find anything, it's just precautionary", to which my brothers agreed, that there probably wasn't anything up there at all.  Little did I know, that CT scan was not only going to reveal that I do indeed have a brain, but that there was even more to it than I bargained for...Bonus!

On September 6th (Momma Nagtzaam's birthday and the day after my CT scan), I was called into my doctor's office and advised to bring someone with me…too stubborn to recruit supporters, I went alone…

That day I was diagnosed with a Meningioma brain tumour on the outer meningeal layer of my left parietal lobe (or, in layman's terms: a slow growing, benign tumour on the membrane surrounding my brain, pressing against the area that controls visual perception, speech, spatial orientation, information processing, pain and touch sensations, and basically all the motor functions of the right side of my body).  After getting the news, I was shaken, like any normal person would be, and it quickly became clear why the receptionist had told me to bring someone along.  Luckily for me, my best friend rose up to the title and was immediately by my side.

Since that day, there continues to be ongoing research on my diagnosis (by myself, friends, and family).  Of course there were many tears shed and difficult conversations had, but with my friends and family, it wasn't long before the comic relief set in.  The Kindergarten Cop references are ever-flowing; cue your best Arnold Schwarzenegger impression...

I try to use it as an excuse for my selective hearing, or my failure to remember to do something I  was asked (yes, being 23 & living with my parents  means I'm still doing chores) "sorry I forgot to do the dishes…my tumour must be affecting my memory", or "don't yell at me, I have a tumour!" although, it rarely  gets me off the hook.

But all jokes aside, my diagnosis hasn't been all bad; it's made me realize how lucky l am to be surrounded by such amazing people. The overwhelming support and love I receive on a daily basis is absolutely inspiring. I've learned that a positive light can be shone on even the darkest of situations, if you let it.

So, my unsolicited advice to you is, SMILE!  Be thankful for your loved ones, your health, your life in general. Things could ALWAYS be worse!