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

Wednesday, March 30, 2011

My Passion

So, no spell check still, so be prepared for many, many spelling errors and type-o's. It's late.

I have been alone tonight. Paige is on Spring Break and is making life much more difficult than it needs to be. Yes, I love her, but man, girl, get it together. She is at a friends and needs to thank that Mom for watching out for her. She knows not how ugly this world is yet, she will learn and unfortunately, she will probably learn the hard way.

I watched "Dear John" tonight. Writing. It is so powerful. The movie was more than I expected, and made me cry A LOT.

As I watched this movie about a young woman who had only two loves in her life, I thought, man can I relate. If you are reading this and you know me, you know that I have had very few real relationships with men. The first, the "high school sweet-heart", but oh, not so sweet. I spent 13 years with a person who manipulated me and treated me with much disrespect. But love is blind, and I needed a seeing-eye dog. From the time I was 13 till I was 26 yrs. old, I believed that he was the one, he was who I should be with, he was the one who would always own a piece of my heart and soul. Not true. Not-so-fast-forward to today, 48 years old, and in love with who is truly the only man I have known true love with. Did I have others in between, I did, but very, very few (you can count on one hand, and not include the thumb). I am as loyal as they come, when I give myself away, I give all that I have. Ed will always be the only person on this earth that knows me inside and out. Good, bad, ugly, moody, happy, loud, crabby, excited, touchy, sensative, angry, elated.... And, he accepted me in all those ways, no questions asked. We love each other in a way that is deep and special, it will never be matched again. Do I hope that when he leaves us that eventually I can move on, I do, I truly don't want to grow old alone. Will there be anyone as special as him again, never. He is an extra-ordinary human and I know in my heart I should be thankful for the time we had and the time we still have together. And I am, but I am also angry and confused and sad. Why cann't someone fix this man I love so much, why can we send men into space and build nuclear reactors and have internet and have everything we have, but no one can fix him. Someone needs to fix him. Someone needs to take away his pain. Someone needs to know that life will be awful for so many of us when he leaves. Someone needs to reassure me that there is life after death so I know that I can have him again. There is no one that can do that. There is no one that can fix him. There is no one that will ever take his place on this planet. There is only a small amount of hope right now and every day I search for someone or something to give us more hope. I am failing.

When he is gone, and all that is left are our memories, I hope it is enough to get me through what will surely be hell on earth. I watch this man suffer and I hear the pain in his voice when we cannot be together and my heart aches in ways I didn't think was possible. Thank goodness for the new people in our lives, the people from the Pancreatic Cancer Action Network, they are living this nightmare with us, they will be the people that will get me through, they will give me a reason to fight his fight and move forward, they will be the people that help find the cure, they will be an important part of my future.

Then there is family, my family is too incredible for words. My family loves this man like he has been in our family since he was a little boy. The support and love they show him is unmatched. I received a text tonight from my cousin in Atlanta letting me know his plane reservation has been made so he can be at the Cleveland Purple Stride event on June 18th at the Zoo. Then, he proceeded to let me know that my other cousin will also be there, she lives in Charlotte, NC...... There are no words. They are my heart. This is how I know, there must be a God. This is how I know, I should still pray. This is how I know that love and family are truly all that matters on this earth.

Edward James you own my heart and soul and I will never, ever give up on your fight as long as there is a breath in me. You brought me back to life, you gave me more joy and happiness in the past five years than I thought was possible. You, my sweet man, are a gift to this planet and when you are gone, the world will not be nearly as nice of a place to live. So stay please. Fight please. Call another doctor please. I need you, as do so many other female humans on this planet. You are plagued by the female of our species, we have consumed your life, we need you. You complete us! Funny, right.

Plus, you get to go fishing in two weeks....... Ugh.

I love you with all my heart and soul, and as we used to say way back when this started....... ILYSMEJD...... me xoxo


  1. Hi, my name is Jay Sutherland. I have been following this blog on and off since hearing about the story on News Channel 5 (which we no longer get here in Findlay). From June 2009 until May 14, 2010 we had the privilage of reuniting with my uncle due to this AWFUL MONSTER. Through the bad of him having this, and eventually passing at 60, we got to get to know him again. I got to see how much God still did play a part in his life, which is a blessing knowing where he now is. Within 2 weeks before his passing, he still walked to mass EVERY week. The comfort of him drawing his last breath with a SMILE on his face, one hand holding on to Mom's, one to mine was... WOW! I too had God to lean on (and also tear apart from time to time...) as it sounds you do. I pray for the comfort of all of you through this!
    Last year I rode in Pelotonia in Uncle Chuck McMullen's memory, this year I ride in it again in his memory, but also your honor. Take Care, God Bless, and remember, Doctor's may be the expierienced ones to guess about how much time, but they are not God. May God be with you however much time is left.

    In Him,
    Jay Sutherland

  2. Thank You Jay, I am sorry you and yours had to deal with this insidious disease. God Bless you and thank you for the kind words and warm wishes. I am doing my best with my faith. Ed's has never waivered once, he continues to amaze me daily.

    Mary Kaye & Ed


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