Tuesday, May 13, 2014

What You Say Can and Will.....

"Mom are you ok?" is how I was woken up this morning.  Jolting up I respond with yes as I try and look at the time, alarm blaring, 7:10!  Oh my, I jump out of bed and rush to make two lunches in two minutes.  Now I'll be honest, my kids are certainly old enough to make lunches themselves, I know this.  However, Peg, my foster mom, made our lunches right up until the day we graduated from high school, and it is one of my fondest memories.  Love is presented in food.  :)  So carrots, cucumbers and dip, granola bar, juice box and some graham crackers flew into a brown lunch bag and a quick kiss and they were off.

I stood there watching them walk up the drive way in a daze of utter confusion.  I am exhausted.  Seriously exhausted and little wonder with the past week.  Yesterday was my MRI and I don't think there is any scientific evidence that they or the dye they inject can make you tired, however every time I have one it takes me days to recover.  I'm sure it's stress and anxiety, either way it's real and overpowering.

I've had a couple of MRI's, 5 or 6 I think, which isn't a whole lot but in less then two years it's enough.  I don't like them at all and the loud banging and clunking caused a flurry of Trigeminal Neuralgia activity.  As tears rolled down my cheek unable to hold my face for comfort in my confined tube, I lay there, counting.  It's what gets me through the ordeal, "ok Kelly this one is for 2 minutes" the voice echoes from inside their protective glass, and my counting starts.  120, 119, 118, praying that each time I get to zero the noise will stop, briefly allowing me to regroup before the voice echoes once again.  The entire time I'm picturing my tumour remaining the same, some how thinking if I imagine it, that is what will appear on the MRI screen.

As the machine slides me out, the cage and padding are removed from around my head, the MRI tech says the following "That wasn't so bad was it" my instant reaction is go into my trigeminal neuralgia ordeal, but instead I said something like,  it's not my favorite thing.  Which in turn he replies with "Well there are worse things they can do to you in here"  OKAY...where should I start with this.  I have no words for him as I stare at him blankly.  He then says are you heading back to work now, I reply with a confused answer of umm no I'm not back to work yet, and he says well...enjoy your day off.  Perhaps it was the magnets that were just whipping back and forth across my brain but I am without words.  As I put my earrings back in, my glasses back on I turn with my teary eyes and walk out the door.  Confused as to what I heard,  am I just over sensitive due to stress.  I'm sure they know I have a brain tumour, chances are good that pops up as a bright white blob on their screen.  Lets just say by chance they don't see my brain sporting its glorious glowing mass, the ordering Doctor is a radiation oncologist.  Yes the MRI was that bad for me, today.  I do know there are worse things they can do to you in a hospital, believe me I am well aware of that one and I consider myself one of the lucky ones.  You do not get a day off when recovering from brain surgery,  I don't get a day off from having a brain tumour.

So what am I upset about 24 hours later?  Words!!  We can choose to listen with them or to ignore, use them to hurt or to help, they can be kind or harsh.  Words are used to gain knowledge, for power and for the greatest debates. Whatever you do with your words you have to own them.  Sometimes we don't even realize what we have said.  I know I can look back on a few instances and think "what on earth was I thinking" or "I can't believe I just said that"  There are moment I wish I could do over, people I wish I had the chance to talk to again.  I just ask that you please, use them wisely.  If I had the chance to do yesterday over I might have responded with the fact that it was a rough experience due to my trigeminal neuralgia, I'm sure the "there are worst things" comment would have never been spoken.  The medical environment has a job to do, find, fix and follow up, these "F" words ring true for everyone from the top surgeon in the country to cleaning staff.  Neither one nor the people in-between can work without one another.  Compassionate words is all that anyone trying to navigate their way through the medical world can hope for.  What you say can and will have an impact on someone today.

Friday, May 9, 2014

Media Blitz, Brain Fits

Wowzers what a week.  Monday started off with me being interviewed by the most watched morning TV show in Atlantic Canada, CTV Morning Live.  The thought of live TV terrified me, what if my brain just can't find the words I want to say!  However, Heidi Petracek, the co-host made the whole experience so easy.  She is a ball of energy that you can't help but feed off of.  So pretty much what I had planned to say didn't really happen but I'm pleased with what did end up coming out of my mouth.  Any awareness about brain tumours, The Brain Tumour Foundation and the Halifax Spring Sprint was worth the risk of possibly going mute, crying or even getting sick on live TV.  Luckily none of that happened :)

Tuesday had me entering the iconic CBC Radio Building in Halifax for an interview with Don Connolly of Information Morning.  This interview being taped, I thought it would be that much easier, I was wrong.  Mr Connolly certainly is a great conversationalist and made the interview a wonderful experience.  However, my brain was certainly in overdrive.  I have described my brain in the past as a large set of filing cabinets, each containing well organized information.  I've also written a blog post explaining that brain surgery is like someone has gone into those filing cabinets and dumped them, mixing up a well organized system.  I continue to reorganize these imaginary files everyday but they are by no means anywhere close to what I once had.  So my interview had me scrambling to find the words I wanted to use, the information I wanted to share, the message I wanted to portray.  I was actually surprised when I heard it Thursday morning, although there is so much more I could have said, it wasn't bad for having a disorganized brain.

Although these two events were just minutes out of each day, they certainly were a stress that I'm not accustomed to.  Sounds kind of funny as one would think the stress of having a brain tumour would compare, but media is kind of a one shot deal.  The brain tumour, well, I've been carrying it around knowingly for a year and half now, so I'm getting used to it's weight on my soul.  Last evening however, my tumour had one of it's toddler temper tantrum fits and decided to throw a very powerful, long lasting hit of trigeminal neuralgia my way.  Trigeminal Neuralgia is painful shocks to the face, eyes, teeth, anywhere those trigeminal nerves run along the face.  As I've said before, although I experience it everyday, the complication from surgery which has my right side of my face almost completely numb,  has been a benefit from the debilitating shocks.  However, I do have places on my face I feel and did I ever get slammed last night.  This shock stayed on, like someone had turned on a light switch and lasted for a good minute.  That may not seem long to someone who has never experienced lightning striking your face, but to those who know this pain, a minute is an eternity.  It actually scared me and I've taken it as a warning that over doing it is never in my best interest.  Today, my face is certainly getting zapped but nothing in comparison to last night.  Today has now become a rest day.

Tomorrow is the big day, Spring Sprint day.  It's a fun family run that is not timed but rather a gathering of brain tumour survivors with their family and friends who can run or walk 2.5km or 5km.  It is also a place for family and friends to gather to remember those they have lost, to honour their memory, to get comfort.  I will be there with my amazing little family and my wonderful friends who together we have formed the Recovery Roadsters.  I am honoured and grateful to have them walking Recovery Road with me, not just the 2.5 km but everyday.  I am so blessed.  Ironically Monday has me sliding in that MRI tube once again for my next brain "check up."  Of course the stress of this is weighing on my mind.  On twitter, those of us in the brain tumour community # "hashtag" it as #scanxiety, a made up word by a lady in the UK, that couldn't be more accurate.  Anyone who has to have regular MRI for whatever ails you, would understand the anxiety that comes with it and the stress of waiting for the results.  Sigh!!!  So what do I have on the go for Tuesday?  A massage, a well needed, well deserved massage.

If you would like to donate to the Recovery Roadsters you can do so by visiting my donation page here.  My family, friends and my misbehaving tumour, thanks you