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

Friday, December 30, 2011

2011 is Over

I have nothing profound to say to anyone, other than the usual - Life Is Short - Live It.

The emotional highs and lows of 2011 are not something that can be put into words.  If you have lived cancer, you know.  I was lucky, so incredibly lucky, to be wholly loved by someone and it made my life fantastic.  People keep asking me why Ed and I never got married, the truth is, he would have married me if I said it was what I wanted.  However, I never really felt like putting that kind of stress on our relationship while he was sick.  It just wouldn't have been worth it to waste our energy.   Some days I regret it - most days I don't.  He used to tell me all the time that we were more married than most people with a marriage certificate and that a piece of paper doesn't really mean that much.  He would say that he knew in God's eyes that we found who we were supposed to be with.  How do you argue with someone who says those things to you.  He loved me entirely.  I loved him entirely.  This was our love story - for 5 1/2 years when we were alone together we were incredibly happy.  Now, that's not to say that we didn't have our moments, we did - but those revolved around our outside lives - not the two of us together as a couple.  It is why we made a point of spending serious alone time together every few months so we could concentrate on just "us" and it would remind us every time of how lucky we were. 

We traveled to Atlanta on three occasions, plus Los Angeles, Las Vegas, Hilton Head, Dallas, Mexico and our many trips over to PIB together - these were the incredible moments we had together.  Some shared with family and friends, but so many quiet alone nights.  Those are what I miss the most.  Alone nights. We had the concerts, twice to see Toby Keith, we had Brad Paisley, Michael Stanley, Ritchie Blackmore and of course, Alice Cooper.  We had several football games and baseball games.  Ed was the first person I ever tail-gated with - I have no desire to do it again because he won't be there.  

When you can spend time with someone in complete silence (yes, sometimes I don't talk, shocking) and be completely comfortable - you know it's right.  We were best friends above all else.  We had great, great kisses, our physical chemistry overwhelmed us both in the beginning...  What an awesome gift in your mid 40's.  But, once the chemo started, there was no more real physical affection, and that is where being best friends comes into play.  He would get so bummed because he couldn't sleep with me because his pain levels became so intense and I missed kissing him more than anything.  Being together as best friends made the other stuff not so important.  He did get mad at me 'cause I was always asking him what I could do for him in those last few months - he told me I was being too "motherly" - but, hell, isn't that what women do?!  When you watch someone you love suffer, you feel the need to fix it.  But we all know, there was no fixing it.   I was so glad he went to Key West with his boys, not just for the need for them all to be together for some real man-bonding, but they got a real taste of what he was going through.  I believe that helped everyone understand  how tough it was for me not to be all "Mommy Bear" with him.   I never sanitized my hands so much in my life!  If someone coughed, I'd be all "get away from him", I made him wash his hands and sanitize them all the time when we were in public or after he played out with Newport...  By the way, where is that new CD fellas?!  He got to play his music, fish, hang out with his great friends, and be very much loved through 2011.  And I acquired a great support team...  Never once did I feel alone in our battle.   Because, again, friendship is truly what makes our lives great - and when you are really lucky - your family is not only your family, but your family members are also friends!  Ed was loved by so, so many and Ed will be missed always.

When we went to hospice in August, we both knew that it was the end and we both knew how lucky we were to have each other.  Nothing was left unsaid.  I will never love anyone, other than my child, that much again and that makes me sad.  It also makes me happy to know that I was one of the lucky ones to experience the real thing, even if it only lasted a brief time.  

So, as we close 2011, I say to you - be good to your loved ones, it is really the most important thing.   


  1. Hi MK..I have been MIA since 10-14. I had your blog bookmarked on my computer and could not remember how to access it. Long story, but we had a fire in our house. Thank God, everyone got out quickly and safe. I was gone for 10 weeks. Just moved back last week. My husband is the one with lymphoma and he is in a nursing facility. My 86 year old Dad, who we all adore, has colon cancer, which was removed. No evidence that it spread, but he is a patient in a nursing facility to hopefully, regain his strength so that he can go home. I was sitting here feeling a little bit sorry for myself. I was going through my bookmarks and here is your blog!

    Your have an amazing gift of putting your feelings and thoughts into words. I want to thank you for sharing these thoughts on your blog. I know that many of them are very deep and personal. Sometimes, I think we want to keep those thoughts to ourselves. You have shared Ed's legacy here. In thinking about all you have written here through the months, I think that I can sum it up as you have experienced and given something that many of us never achieve in our lifetime. It is unconditional love. It is very unique that both you and Ed shared it and gave it to each other.

    I wish you much peace in the New Year.

  2. Well thank you Laura... I am an open book, so many people find that unsettling and wrong. The truth is not always pretty, usually it is quite ugly as a matter of fact, however, sugar coating the truth never felt right to me. It was actually something Ed loved about me. It didn't mean he always liked what I said, but he always appreciated the fact that what I said was exactly what I thought or felt. No guessing involved.

    I hope you and your family find peace in the New Year as well. I cannot imagine living through a fire and dealing with cancer on both ends of your life. Hang in there, it is about all I can say. Hell, it's all any of us can do.

    Thank you for the thoughts, I appreciate them very much. I often wonder who still reads and think many times that I should stop writing, but I will stop when I'm ready I suppose.

    Take Care and God Bless - MK


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