Always Fighting for the Love of My Life

Edward J. Demyan; Pancreatic Cancer Victim; Supported and written by MaryKaye Mackulin, who loved him.
RIP my sweet man ... 1963 - 2011

Monday, August 27, 2012

Pancreatic Cancer Awareness Day with Cleveland Indians & NY Yankees

Our Awareness day with the Cleveland Indians & New York Yankees was a complete blast!  We had such fun and truly believe that there are quite a bit more people from NY and the CLE that are now aware that we exist and we are not going to be going away anytime soon.

Working with the Cleveland Indians Organization could not have been better - the entire staff from your high office employees to the folks in the concession stands where our table was located treated us like royalty.  We truly appreciated all the support and kindness.

It Was A Great Day at the Ball Park!




Thursday, August 9, 2012

Alice Cooper - 1 year ago today.

On August 09, 2011 - Ed headed out on his last adventure of his life.  It was going to be a bit of a challenge - convincing him to use the wheel chair, not knowing if he'd be able to make the entire show, not knowing if he'd be able to stick around to meet Alice after the show....  But he did - because Ed Demyan was a ROCK STAR my friends - An absolute ROCK STAR.

This is the week we knew we would lose him - on Aug. 10, 2011, I returned from work and realized he had not really moved - he had slept the entire day and did not eat or drink anything.  I made him drink a smoothie and sit up a bit, but we knew - We didn't want to know - but we knew.  On Thursday morning, Aug. 11, 2011 Ed headed to hospice and began his journey to the other side - he fought it like a champ, and hung in there until the morning of August 17, 2011.  Then he just stopped breathing... went from sawing logs to a quiet sleep and just stopped.  My heart broke completely in half at that moment and will never fully be healed again. 

Those days in hospice all run together in my head as one giant day....  My memories of those 6 days are still very vivid however.  Some of the memories are mine and only mine as I was with him all day and slept there at night.  I only left him on Monday to go to my office and I still regret it a bit.  But after being in his room for 4 days straight, I too, needed a break.  Plus, I only left when I knew there were people with him that I trusted 100%.  I never felt safe with him alone in his room, and there were a few people that I was not sure would really take care of him, he was stubborn and kept trying to get out of bed and he was in no shape to walk by himself.  His friends did things for him that would have made the Grinch's heart grow out of his green chest....  Shaved him every morning, helped him shower and clean him up, took him to the bathroom, visited EVERY single day - sometimes twice.  Made sure I had enough to eat & drink.  Played him his music.  Came and watched a pre-season Browns game....  incredible.  Sometimes they would come a bit later in the evening just to sit and talk to him and hold his hand.  LOVE is what he was surrounded by - LOVE is what he was. 

I cherish that week like no other - especially the very, very quiet moments in the middle of the night when it was just the two of us and he couldn't sleep and I would sit with him and talk to him and he would squeeze my hand and look at me with those incredible blue eyes of his.  Knowing he was never, ever alone and never would be.  He was filled with so much love and compassion and sometimes fear.  What a sweet, sweet man.

This year has been ugly and sad and down right pathetic at times....  Again, all the things he told me it would be when he was making his arrangements.  I am glad the first year is almost behind us.  And for the people who spin tails of the past that are untrue and/or all sugar coated (and know it can be done because he is not hear to call you out) well - eventually you will have to face him yourself and explain the whys to him.  Unfortunately for me and my family and Ed's close friends, what we saw, heard and witnessed cannot be unseen, unheard or unwitnessed....  My perspective will remain the same always.  And there is no forgiveness in me for that behavior. I miss one small girl, that is it. So enough of that.

I just had the most fantastic week on the beach with 3 of Ed's best friends and their families and my awesome kid...  much needed R&R from an incredibly sad & busy year.  Volunteering, working full time and being a Mom/Chauffeur/ATM machine is quite a bit for one person - but - as those of us who are truly dedicated to The Pancreatic Cancer Action Network know - Productive Grieving is the best way to grieve!  Sitting around doing nothing is NOT an option.  And, So the fight continues!

If you are at all interested....  Please join us at Progressive Filed on Sunday, August 26, 2012 as the Tribe takes on the New York Yankees and We Raise Awareness for Pancreatic Cancer....  Join the Cleveland Affiliate and make a difference!

Pancreatic Cancer Awareness Day w/CLE Indians & NY Yankees - Sunday 8.26 - ONLY $22 a ticket, Wear Your Purple.