Behind the Facebook Page: Melissa’s Involvement in Guinness Record Attempt By Epidemic Music Group

This morning I spent downtown for a 45 minute MRI, to explore cause for concern based on recent onset symptoms I’ve been having. Results TBA….

This is my life.

It was October 2011 when had emergency surgery to remove a Brain Tumour I didn’t even realize I had. It took months to learn how to walk again and switched from being right to left handed- making playing guitar of 10+ years no longer possible. During surgery I had a stroke, effecting the left side of my body- fully functional yet permanently feeling colder only on that side. Oh, and chronic pain. Omg, the years of chronic debilitating pain.

A few years later, right after I released my book, Kevin Ker​ of Epidemic Music Group​ welcomed me with open arms to join the Markham Village Music Festival​ to set up shop beside the The North Stage​ to raffle off my beloved guitar… he did not ask for a nickel- rather, was shaken at the thought of instantly being unable to play- amongst other things. The draw raised $810 dollars, which went to local charity B-Strong and important Markham Arts Council. Little did I know about a year later the guitar was donated back to me from the winner, where I raised an incredible $1800 for the Brain Tumour Foundation of Canada after having full head and spine radiation.

Although there have been many dark moments these past 5+ years, the truth is there have been many, many moments which I’d call the best in my life (melissalnichols.ca… cue horn, “toot toot”).

Fast forward to the present, where I am involved in this Guinness Record Attempt By Epidemic Music Group event as the Facebook coordinator. I love planning the event, building friendships with fellow positive people and making a difference, seeing as how its beneffiting 16 charities.

Attempted Guinness World Record to Break:

‘Longest Concert Bt Multiple Artists’

March 17- April 2nd: 16 Charities, 24 hours, for 16 charities

Only surrounding myself with positive people, personal growth and FUN, I am having an incredible time running this Guinness Record Attempt By Epidemic Music Group​ Facebook page and participating in the planning committee! The committee is a productive ball of fun. (Pssst, volunteer! Contact Shaen Ar shaenvolunteer@gmail.com)

Enjoying moments every day, taking things day by day.
Aside from the fun, and thriving in the moment of this 16 day event- am looking forward to SUNDAY MARCH 26, as I proudly stand beside one of the 16 charities selected: Brain Tumour Foundation of Canada​.
<3

~ Melissa​

Looking to Change the World, one Head at a Time….

I have been involved in so much awesomeness lately, am hardly finding the time to stop and reflect on what is currently happening; moments are gone before I can even processes it…GOOD! Although have been known to take lots of pictures – I try to put my phone promptly away right after, in order to enjoy the moment. Please do not mistake my pride for gloating- it is such an electrically exciting feeling knowing am making a difference in the lives of some of those who need it the most.

Ps- These situations don’t just fall in my lap- I bust my ass to make them happen- and yes, having so much fun doing it at the same time! I step out of my comfort zone to the point where after a while, it becomes a ‘normal’ feeling.

Consider the following pictures to be my ‘show and tell’ kindergarten kiddie-like news from the past couple of months.

December 2016 I received this note of gratitude from Maureen Daniels, Program Coordinator of Princess Margaret. Tried to make my first VLOG only to almost break down in tears (in happiness) while reading this to you… so will just show you instead.

Dec 2016: A note of thanks from Maureen Daniels, Program Coordinator for the Patient & Family Advisory Committee of the Brain Tumour Centre at Princess Margaret Hospital (Toronto).

 

Day by Day I’m getting stronger – and day by day I’m lasting longer

Snapd Markham Article

February 2017 Markham Snapd Magazine, Page 8

(Acknowledgment of thanks on Day By Day Facebook)

Back story pics to Snapd article…

Photo of niece Laura and I, in LG’s ‘Life Messages’ book.

This is the photo in Laurie’s photoart book ‘Life Messages’- I explained this at the book launch with my sister Jennifer. Every time I hear ‘light hearted tale‘ makes me cringe; I was trying to convey it is laced with humour- because thats the way I am ex. flirting with the surgeon days after surgery when high on morphine- while a drainage tube was sticking out of my head.

 

2013/2014: Head & full spine radiation
2015 – Hats For Hope

 

 

 

 

 

 

 

 

 

 

 

 

Wait ’till you see what I’m up to next…. let’s just say, I am now friends with the worlds loudest recorded BURPER! – YES, this will make the world better. You’ll see…..

….. to be continued

Confused Punishment

Confused punishment was something I had a hard time coping with just a few years ago, whereas now feeling… well.. like Mr.Bean does here. I ignore when not worth it, whereas other days… well… lets just say I can advocate for myself  I am happy and I am free.

Confused Punishment: When you encounter poor treatment/further penalty based on the side effects of treatment/ medication/ physical or emotional stress from a Brain Tumour.

Examples
1. Dirty looks from strangers thinking you are drunk, when out learning to walk again, swerving.
2. Secretaries being personally offended/ blatantly rude if missed appointment, not realizing you forgot to write a reminder not to forget the appointment
3. Judging a RBF in social situations, when you are fighting a anxiety attack off inside
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Seeing this gif. of Mr.Bean instantly makes me smile- admittedly I even giggle like a teenage girl- as it reminds me of my reaction to confused punishment these days. However, it wasn’t always this way.  There were dozens of difficult moments when these instances happened- I guess you can say I have forced myself through this storm by turning my anger into determination. 5 years of determination to convalesce close to 90% makes me proud and strong of the accomplishments made, and-then-some. This wouldn’t be possible to those who have supported me- people like you, who are reading this right now, thank you.

Favourite day of 2016

 

The best day this year was October 13, 2016 (click).

I spent my 5 year Brainniversary at Toronto’s Princess Margaret Hospital- Brain Tumour Centre, giving out copies of Day By Day and homemade hats generously made and donated by friends, family and idea supporters of ‘Hats for Hope’ program.

Last week I received a note of thanks from the Program Coordinator of the Brain Tumour Center of Toronto’s Princess Margaret Hospital.

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Thank you to all who made/donated hats and to the Patient and to the Family Advisory Committee (PFAC) of Princess Margaret for adopting this idea and successfully rolling it out!

It is moments like this THIS that help me keep going, Day By Day.

~Melissa

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!

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

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

5 YEAR BRAINIVERSARY

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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.

 

 

 

 

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.

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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….