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, February 20, 2012

6 Months Now

So, the six month mark came and went on Friday 2/17/12...  The sting of missing Ed is still incredibly strong.  Valentines day brought back an awesome memory from VD 2011.  Last year Ed was in Brooklyn for VD week, no big deal, we didn't really celebrate that day.  But in 2011, I guess he felt like he needed to make a fairly grand gesture - maybe because we knew it would be his last - or just because he WAS Ed and had the incredible gift of making me feel special for no reason at all.  Man I miss him.  So anyway,  I was just coming downstairs to leave for work and I hear my house door open, I was like - Hmmm?!  Who is coming in my house at 8 a.m.?!  It was my darling man...  Although he was on disability by this time and had NO reason to get up early - he did.  He went to Malley's (you have to be from the CLE to understand this) and picked me up fresh chocolate covered strawberries and chocolate bacon bark with an awesome card of course.  I mean, come on man, how sweet is that.  Here is a guy on disability, with terminal cancer, in so much pain it cannot be described, but he gets up early, fights the VD crowd at Malley's, drives the 20 minutes to my house - all before I leave for work - so I could have a special day...  the level of Ed's UNselfishness is still astonishing to me.  I will never know another human who is/was so selfless as he was.  He truly did NOT have a selfish bone in his body - it was why it was so easy for people to take advantage of him - and they did.  It took him a long time to really identify who his true friend were and who would not take advantage of his great nature.  Again, it goes to why we didn't get married - he would have done it for me - but there was NO way in hell I was going to take advantage of that sweet nature and put all that pressure and stress on our already rough road.  Would I have loved to have married him - HELL YES...  But, as I stated before - it wasn't the most important thing.  Ed had already given me the most important piece of paper of his life - I was his Health Care Power of Attorney - He trusted me to make the decisions for his end of life - that is a great honor and shows trust on a level that some people will never know.  He knew I would absolutely honor his wishes - to let him die the way HE wanted - no feeding tubes, no vent, no prolonged suffering.  Does every part of your being want to do that stuff when you love someone to keep them alive, again, HELL YES...   Would I ever NOT honor his wishes - Not In This Or Any Other Lifetime.  He was DNR CC only, no heroic measures were to be taken to save his life at the end, it would have only prolonged his suffering - he fought hard - he was tired - it was time for him to go home.

I miss Ed so deeply and profoundly that words cannot describe it.  I loved him so deeply and profoundly, that words cannot describe it.  So for all you lovers out there - it's not about Valentines Day - it's about EVERY DAY.  And if you are not with your absolute Best Friend on your journey through life - don't waste anymore time - make a change.

Also - If you read this blog - you know that The Cleveland Pancreatic Cancer Action Network is gearing up for PurpleStride 2012 - Won't you Please Please consider joining Ed's All Star Dream Team or at least make a small donation to our team.  When it comes to Pancreatic Cancer - every SINGLE penny counts!  I'm not asking for big dollars, just a few would be greatly appreciated.  People being diagnosed with Pancreatic Cancer need to know that it is not automatically a death sentence and that HOPE is in their future.

Copy & Paste this link to register or donate:

or go to and click on the "get involved" tab; go to "events & fundraising" look up the PurpleStride Signature Events - and find an upcoming PS in your community!  It's Easy - It's Important - It Could Save A Life!  We do not have the deep pockets like some other programs nor does the Gov't fund PC like some other cancers - we are grass roots - we need YOU!

Peace!  MK

1 comment:

  1. MK...What a beautiful gift you give to all of us who read your blog. You give yourself and your precious, personal feelings shared between you and your Ed. Everytime you do, you honor his legacy and the love between you and him. That love will never die. It is so hard for me to explain it to you. I am the one who lost my 25 year old son in 2005. My only son. My husband is in a nursing facility from lymphoma. Even though my son is no longer physically here on earth, I still have a relationship with him. It takes on a different realm. I have had many many "visits" from him. So has his friends. I wonder if you have experienced any of those yet?
    I do not think in reading your blog that a piece of paper saying you and Ed were married would mean anything. What I mean is that you and he were connected mind, in your hearts, and deep to the soul. That is a bond that is eternal. It will never cease. Have you ever considered writing a book? I think you give hope to those who have suffered a loss. You share your feelings so easily. As always, I pray for peace for you. I know all about the grief journey. You will be on this journey for the rest of your life. Some days are easier than others. Some days are good. Some just suck. Like I told you before, grief has to be selfish. Thanks for allowing me to read your blog. I truly consider it a privilege.


Comment will be reviewed prior to publication; all comments that are non-offensive will be published as submitted.