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 22, 2011

Good Night Edward

Edward J. Demyan...   You are missed so much.  I will love you forever.

To those of you who have followed this blog for all the right reasons, thank you for your love and support of my sweet Edward.   He felt it and it meant a lot to us both.

Ed stayed strong until the end, Ed never complained, Ed never said "why me", Ed always, always kept a smile on his face...   He showed affection all the way to the end of his life.  His last day was completely spent sleeping, but we just knew he could hear us.  (Oh, try and only say positive things to a person on their death bed, I mean really)  He was loved so much by so many and they all made sure he knew it.  If anyone would have ever told me that I could sleep in a hospice room for six straight nights and remain sane, I would have said no way, but seriously, I would have done anything to protect that man and to make sure he knew he was not alone for one single minute on this journey.

For those of you who have followed this blog for reasons other than being supportive of him, wow, you proved Ed so right in these last couple of days.  Man, he called it right from the beginning.  He knew exactly what would go down, what you would do and you did it.  My Sweet Edward - no more of that for you ever again.  He specified his wishes directly to you, to your face by the way, he also knew that there was a good chance that his wishes would not be honored.  Ed, himself said, why would you/they start honoring me now...  That constant negativity and nastiness will no longer surround him.  Too bad it had to be present in the room he was laid to rest.   And, piece of advice - one should never tell someone on their death bed that they gave-up and should have had more chemo, 'cause then Ed would be fine, when they don't know what they're talking about...  So wrong, but again, just like Ed expected it to be.   If you know you didn't honor him & treat him like the rock-star he was while he was on this earth - you can live with that now.  If you were left out of the planning of his final arrangement and his estate planning, it was because he didn't want you involved.  This was about Ed and Ed's final wishes.  I hope you learned something.  Oh, and by the way, when the love of your life passes away, I'm sure you will be thrilled to see me at the luncheon to pay my respects.

I'm sure some of you just read that last paragraph and are thinking, WTF?  (Or,  you are so pissed off beyond belief and cannot believe I wrote it - too bad...)   I just really needed to point out to the public, who may be getting a different story from a point of view that wasn't Ed's, that Ed made all his final arrangements himself, Ed specifically requested my Mom and Michael to help him with all his arrangements because he respected them and they him & wanted to make sure his wishes were adhered to.  He also knew my Mom would never be bullied by anyone, anytime, anyplace....   He also knew if I had to deal with the situation, I would have blown a gasket and would have wound up in the Parma Jail, along with several other select friends that would have had my back (ladies and gentlemen, you know who you are, and I thank you).

Ed turned into the man he wanted to become because he worked on it every single day;  Ed made a decision a long time ago to become the positive, glowing man he became.  He lived for the future, never the past, he knew the mistakes he made and did his best to learn from them, he was a gift to us all.   He will be missed more than words can express.

Ed loved our girls, myself and our friends in a way that is not encountered often on this planet - I am forever a better person because he loved me.  We left nothing unsaid and he knew how much he meant to all of us, that is the only good thing to come out of a slow process like Pancreatic Cancer, there are no regrets and nothing left unsaid.  So, if you feel that you had things left unsaid with him, that is on you. 

I will miss him every day and I will continue to move forward and make him proud. 

Peace - mk


  1. Dearest MK,

    The bond and the love between you and your Ed is forever. Nothing and no one can take that from you. What a legacy he left. He showed people how to be positive despite the odds being stacked against him. Every photo I see of him (and you)...there is nothing but love and happiness all over your faces. What you have is so special. Most people never experience it in their lifetime.

    I will keep you in my prayers. I know from my own personal experience in grief (lost my 25 year old only son almost 6 years ago) that it is a life long journey. You will never get over this. Never. In time, it gets easier to get through the days. You will have good days and bad days. It takes time to find your "new normal". Never let anyone tell you it's time to "move on". That will never happen. You will still have a relationship with just takes on a different realm. Most people would not understand how that could be or how that could happen. I sense that you do, and you will understand what I said.

    Be good to yourself. I thank you for sharing your feelings on this blog. I know it's not easy, but you have shared so much. I pray for peace for you. You will always be Ed's girl.

  2. MK,
    I am so very sorry to see that you had to deal with nastiness while fighting what you so rightly named a living, breathing MONSTER. I don't know any of you, I only saw the story on News Channel 5 and have proceeded to follow the blog since then. Even still, I can tell that you and Ed had (actually HAVE) a very special relationship. Don't think yourself crazy when you still talk to him; he is your love and that is what you do. I just want you to know you all are in my prayers still as you continue to go through this. I can not wait until the day a cure is found for Pancreatic Cancer. What joy that will be; though bittersweet as for our loved ones it was not there. Stay wrapped in Eds loving arms, and know that he is at peace with Him who gives peace to all.

    Respect to you All,
    Jay Sutherland - Findlay, Ohio

    P.S. I saw before I rode in Pelotonia this past weekend the news, so not only did I ride for Uncle Chuck McMullen, but also for Ed Demyan.


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