Wow. THIS is why I wrote Day By Day.

Recognized this morning while standing in line at a local coffee shop. As if a celebrity sighting she exclaimed with exuberance her delight to see me, greeting with a hug and insisted to buy my coffee. After a few words exchanged I finally remembered who she was: 6 months ago I gave a Day By Day copy for her to share with her friend who was in the midst of riding the cancer rollercoaster.
The woman shared how deeply moved she was while reading the book. She said she especially liked the ‘cheeky sense of humour’ I shared; especially the part about my new-found power of cupcake distribution control while in the rehab hospital; only giving them to staff only to those who were good to me. *haha… I forgot about that! (My sister Heather made me a dozen decorated cupcakes when in rehab hospital to give out to all staff). Now thinking about it, this reminds me of the Seinfeld episode featuring the ‘soup nazi’. Remember?
 
Although bursting with Leo pride from gratitude, compliments and gifts, the number one reason why wrote the book was to help YOU. THIS is why I wrote Day By Day. Thank you for your praise – it will never get old to hear validation that the book helped by providing you with some helpful some tips as a patient/loved one/caregiver, or at least made you smile. As if solar-powered, your feedback powers my ‘inner light’ to keep me going, even when down. Knowing I’m making some moments in your life better, is a gratefulness I will never be able to fully express.
THANK YOU Laurel of Markham!
Share

Honouring Susan

‘A picture is worth a thousand words’ as the saying goes, so here are a few based on this photo: I see compassion, generosity, thoughtfulness and humbleness.

This post is to honour Susan Jones and hopefully inspire everyone reading this. On the internet, Susan saw Care Packages being made up and distributed to the homeless, which inspired her to do the same. When asked what is in the package, she shared brought and packaged a hat, pair of gloves, two pairs of socks, kleenex, notepad, pen, and candy. On my way downtown Toronto PMH for a routine checkup I will be dropping those packages off to homeless I see in that area.

 

Thank you Sue!

You are making the world a better place

Share

This Song Made Him Stop Crying

The first 25 seconds of this video may be the only recording I have left of myself playing guitar. About a year later- well… you know.

My Mom, sisters, baby Adrian and I went camping together summer 2010. Not sure what came first: baby’s crying or my guitar playing 😛 Regardless, after a few Rolling Stones, Damien Rice and Bob Marley songs, I played this song. Adrian calmed and the camera rolled.

 

 

 

RIP Leonard Cohen

Share

5 YEAR BRAINIVERSARY

untitled123

 

Snuggled in with a warm blanket on my couch and tea at my side, I’d like to start by saying that I don’t know what to say.

I could boast about the many successes I’ve had during these past years like a ‘show and tell’, but that’s not why I write these words tonight.

WOW! Its been 5 years since I had that life-changing surgery. I am back to being the same I was inside, just a bit stronger. Having the education, lengthy work experience, being a patient and still recovering- it’s safe to say this gal could share a thing or two about quality of life and quality of care. This brain, these eyes and this heart can tell you a lot. I sure wish I had a magic wand to fix what I’ve seen, heard and felt in this world.

Riding this rollercoaster of recovery has been incredible, to say the least.

in·cred·i·ble
inˈkredəb(ə)l/
adjective
  1. Impossible to believe. “an almost incredible tale of triumph and tragedy

(Thank you google…)

Triumph in deed…

I still remember that feeling of standing in front of hundreds of people as the Keynote to the Ontario Conference for Activity Professionals- speaking to my fellow AP’s with my college Professor looking on. Too bad the phrase ‘words can’t describe’ have been overused, because that is the first thought I had to tell you, but it’s true. It was a surge of energy, frantic fear yet electric excitement folded together. Feeling like you could burst with excitement with everything you want to say and hundreds of eyes on you. Well, I guess words can describe after all 😉

Tragedy…

I know you don’t understand what I’ve been through- and that’s ok!! I don’t want you to! Just got a flash back a couple of years ago. I was so upset, so fed up with living and suffering- I fell to my  knees just sobbing. Things have gotten a LOT better from then. Now, the distance between the dark times have drastically dwindled. Every so often though, there’s that pause when something out of the ordinary goes on within my body. For example, my recent change in eye sight- now requiring glasses occasionally! I think to myself,

Is it medication side effects? Permanent reaction from radiation? Are the tumours growing back? What is that pain? Why didn’t they…?  Where else can I …. 

Remember ‘confused punishment’ I talked about in Day By Day? (Confused Punishment= an adverse reaction of shaming or added issues because of an uncontrollable tragic situation ex. brain tumour).  It’s STILL HAPPENING! Let me tell you a story that recently happened: although I lick my lips smugly, craving to tell you the details, my integrity permits me not to name names. Recently called to re-book an appointment with a doctor, as recently missed the appointment (because I forgot to remember not to forget to write it in my calendar… yes, you read that right!). The receptionist looked me up in the system, and like a light switch instantly gave me major attitude, and quickly matter-of-factly reminded me I changed doctors and missed 3 appointments in the past 3 years. She was shaming me over the phone, assuming I was just a careless princess. I kept my composure, “Excuse me, did I offend you somehow?!” Yet she wouldn’t admit her assumption over the phone. What did I do then, you ask? Calmly ended the conversation with my new appointment booked.  Furious… not a minute was spared when darted straight to that office to talk to her 1:1. She assumed I was being careless- not knowing the first doctor I had made me cry, and aside from the 1 appointment missed, the other ones I couldn’t get a ride last minute. You should have seen the look of embarrassment on her face. Needless to say, I put her in her place.

*exhale* Confused Punishment. still. happens. all. the. time.

In regards to health concerns; there’s a chance the radiation doesn’t work and the tumours grow back. Theres also a chance this type of tumour (hemangioblastoma) will become an aggressive cancer and nix me quickly. There’s also a chance radiation was successful and need to get into complementary natural medicine to prevent anything else from happening (know anyone?)…. How much longer do I have? days, months, or years? SNAP OUT OF IT. You just gotta keep living life, right? What else am I supposed to to? Enjoy while I’m here.

I refuse to live the rest of my life on the edge of my seat worrying about results of the next MRI.

I am Living it up! Loving life! and Laughing a lot! I surround myself with positive, wonderful people and never forget to ‘play’, because you’re never too old to have fun. I’m living in a wonderful tangled mesh of my passions: Personal and professional growth of Toastmasters and Nurse Next Door, getting stronger and more independent with use of my 3 wheeler bike and having fun painting with Bob Ross on Netflix… red wine and cherry cheesecake are added bonuses! I am enjoying my life and thankful for every day, and taking things day by day.

 

 

 

 

Share

Celebrating NOT winning the lottery!

It was difficult to live in the moment last night, since thinking about today was a bit of a nail biter. I felt nauseous just thinking about it. I know- I know: ‘Day By Day’ right? I had an appointment today to see why my vision has been occasionally blurry/ seeing double when reading for the past couple months. I forced myself to go out and try to enjoy some local talent at an open mic close by. Did it work? Sure did. Music has a way of soothing the soul– for a little while anyway.

It has not been a smooth ride by any means after radiation being deemed successful 1 year 1/2 ago. From a mystery bruise here, pain there, anxiety attacks, tingling limbs, numbing pain, crying fits, wacky skin flares- sorry John Mayor, my body has been more like a circus than a wonderland! Nothing major has boiled to the top though- all symptoms reported were either deemed radiation effects, medication side effects, brain changes and of course the occasional shoulder shrug and ‘just carry on’ blips. My new normal.

How do I stay positive? Humour. I think I’m funny as hell. I also love to help other people- recharges my solar powered soul. I also stay away from negativity of all sorts. Ongoing self-growth helps too- whether its emotionally, socially, spiritually, physically or intellectually; challenging myself and seeing both success and failure as growth.

giphy (2)
Hilarious Will Ferrell in the movie ‘Anchorman’

I worry about being labeled the ‘boy who cried wolf’ to my medical team. Although they trust my words, admittedly I still carry paranoia based on the beginning of this journey, when being waved off because evidence did not show trouble even though MY GUT told me different. Damn it, the one time I regret being right! 😉

Excuse me, I digress…

Here is what I wanted to share: went to the prestigious Princess Margaret Hospital today for an eye exam, and I am SO happy I did not ‘win the lottery’ (having another BT; terminology of adored Dr.Muller, as explained in Day By Day). Clear of anything worth a large concern right now.

Although, tests did show some vision changes.

Now, I need glasses.

No problem! Admittedly I wanted glasses for years! (be careful what you wish for, huh?). Wearing themIMG_20160805_170953668 makes someone look more pensive, intelligent, taken seriously- and theres this picture of sister Heather and I in the 1980’s. Love it! Hahaha!

Heather, will you please come help pick out frames with me!?

What does the future have in store for me? I don’t know.

Day by day my friends….

Share

Celebrating another first!

Today was a special day! 

IMG_20160711_093818567The reason was not a celebration of a birthday, anniversary or wedding- to me, it meant more. It was a $5.00 plastic cup with a double chamber to hold cold liquids on the bottom and dry on top… (for all you yoghurt and fruit lovers this is awesome).

I bought it about a year after brain tumour surgery (2012). You know what I was thinking?

Great! When I start working soon I’ll need this for my lunch break.

 

As weeks, months and years passed since the purchase, still unable to work, my cup just sat there unused, as I promised myself I would use it only when working again. That was 4 years ago.

A few months ago, I have joined back into the workforce! Today I grinned as I used the cup for the first time! I  instantly remembered when I bought it and my overly ambitious expectations of recovery.

Looking back it was an incredibly unrealistic goal considering the shape I was in physically (along with chronic pain and medication side effects). Funny looking back now.

Although I can hear so
me of your grumbles-

You’re crazy! Why would you want to return working? Relax! Enjoy ‘retirement life’ for as long as you still can!

ap

But thats not me. Although little hours, it’s something to do, great feeling to be needed, and I enjoy my work. Best of all: I’m part of a team that’s making life better for their clients, that provides home care services to seniors. My peers are incredibly positive, fun and share the same passion as me: providing quality health care and quality of life. Because of my Social Media responsibilities, I am able to work from home or in the office- which is a huge plus when an ‘off’ day happens!

Like a $5.00 plastic cup, no matter how small an achievement may seem to others I hope you still take a moment to celebrate.
M

Share