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.   

Wednesday, December 21, 2011

PC needs to be stopped

Here is a blog everyone should read that has read ours:

This family's journey with PC makes what Ed and I dealt with look like a walk in the park. 

Pray for them as you prayed for us.  You will cry, you will be inspired, you will leave your computer knowing how truly lucky you are if your family is healthy.

Time with your loved ones - it is truly the most important thing on this planet.

Monday, December 19, 2011

Christmas Week

So, it's the week of Christmas - it's been 4 months and I am doing surprisingly well.  After posting about "letting go", it really makes a big difference.  I think I only cried a few times this week, mostly because of certain Christmas songs.  I know mass will be difficult on Saturday - but I'll cross that bridge when I get to it.

The kid had another weekend of one basketball game and two soccer games;  She had 2 - three pointers again this week in b-ball, that always gives her a boost in the ol' ego department.  She played tough soccer on Sunday as well.  Her body is paying the price today.  She got nailed pretty good - but she also nailed a few players pretty hard as well.  Really playing some tough defense.  And, a Christmas miracle occurred - she stayed home Sat. all day & night and even watched a movie with me.  Truly a blast from the past.  I guess you could say we are both finding our "new normal".  It was nice to have her home.  She continues to do really well in her new school program and for that I am thankful.  I am surprised about how much drama she still seems to encounter from girls she doesn't ever see anymore - man, ladies, get a life.  Geesh.  She's been so pleasant (I know that typing these words - I'm changing it already).  Well, this could be because she wants awesome Christmas gifts - yeah, like I'd ever really NOT get her awesome gifts.  I rock as Santa. 

Next on the ol' kid agenda will be her temporary license and driving school - UGH.  I am not ready for this.  I'm completely freaking out - I so don't want her to drive.  But, you know, it has to happen.  This is the area where Ed would have been awesome - he's already been through it and he was so calm and rational that he would have been a huge help to her in this capacity.  You know he is just laughing his ass of at me freaking out.  

So, anyway, family coming home from the ATL and Charlotte on Thursday - Yeah.  Charles D. from Los Angeles will also be in town and I will have the honor of delivering Ed's Gibson to him on Friday.  I know this will make both Chuck and Ed happy - it will be in the good hands of his great friend to play from now on.

So, Merry Christmas, Happy New Year - or- Happy Chrismahannakwanzavis - what ever you celebrate, I hope it's great. 


Monday, December 12, 2011

Don't like it - Don't read it

Dear Other Bitter Spiteful People (as I, myself, have been one lately) - you don't like my blog - don't read it.  Thank You and have a lovely Christmas Season.

After this weekend - I've decided that I won't continue to be this way.  It IS entirely too ugly and I have come to the conclusion that it would really disappoint Ed and that from yesterday moving forward....  I'm going to be happy.  'Cause that's what he wanted.

Watch, I'll change this a few more times.   See - 12/14 - Changing It....   Relief - I feel relief at last...  I have finally let go...  Man, does this feel good.   I think I have caught up on much needed sleep and I don't have to "try" anymore....   Forward movement now.   So, I may not have prayed recently - but, I believe, all of yours have paid off.  So Thank You.  MK

Tuesday, December 6, 2011


Well, less than 20 days till Christmas.  I have not purchased one item, not one.  It is pretty tragic actually.  I have not put up my tree yet either - just pathetic. 

So, Christmas....  What is there to say.  I cannot go into a church without losing it.  Christmas Eve mass is going to be completely embarrassing because I know I will just weep.  I would always get very emotional at Christmas anyway, now I'm a complete basket case.  I really thought that at the 4 month mark I'd really start to bounce back, but yeah, that ain't happening.  Ugh. 

My child is at least doing better now that I have yanked her out of the hell that was her High School.  She has been in a special program for one week now and it seems to be going well.  Man are girls mean these days, jeesh.  I mean, girls have always been mean, but it's at an entirely different level now-a-days.  Social media doesn't help either.  She just has to find her part-time job and I think she will really begin to grow in a positive direction.  I think Ed would have liked this change for her.  He was always on her "team" and really did see the positive attributes of that child.   She misses him so much - as, obviously, we all do.  Ed's "boys" and their wives have done a great job taking care of me these past months, and for that, I am thankful.  I had the incredible need to be around people who knew him best and they let me.  I was so sad when I did not get to go through his personal effects, it broke my heart in ways that are not even explainable (I'm sure there are several people who will find joy in that).  As time passes, and I've come to accept the fact that I will not get the personal items I made for him, which he treasured, I realize that I did get the best thing of all - I got incredible friendships, and that is worth more than any Christmas calendar or card or book or goofy t-shirt or jacket or whatever other material items I seemed to be missing.  I have his words from his e-mails and I have great, great friends.  I have acquired two new "bff's" actually....  Darcy and Toni - what would I do without you ladies for even one nano-second, I cannot even begin to imagine.  Then there are the rest of them....  Rob and John, Wendy & Michael, Nano & Greg, Jean & Mark, Greg & Dawn, Johnny G & Melissa....   You are forever in my heart.  Then, there are their children - I love each of them as well.  Oh, how each of you have become such an important part of my life.  Please know, I realize I have been quite difficult these past few months - but also know I love you all and wish each and everyone of you, and your families, a very Happy & Healthy Holiday Season.

So, as I try and move forward, I must remind myself every single morning that Ed made me a better person and in turn I will try and continue to be a better person.  It's hard.  It's harder than anything I have ever done.   With the child preparing for her Confirmation, being in church will once again be something I begin to do regularly, and with any luck, and by the Grace of God, maybe - just maybe - I will be able to stop crying every time I step foot in church.  I told her, her confirmation name should be "Edwina" - ha - she didn't agree.... shocking!  But, I promised Edward that I would make her complete her Sacraments and that I will do.

Ed had several nick names, I guess the most commonly known was Eddie Luv or Dr. Luv...  but I have started to refer to my child as the one he thought was pretty funny - Demon Seed.  Some days I believe she was made with an actual Demon Seed.... AND THEN,  then there are days like yesterday...  Cleaned her room, emptied her garbage, cleaned up her bathroom and, the icing on the cake, cleaned the fish bowl.  I refuse to clean the fish bowl - refuse.  I told her no goldfish were welcome in my home, then in July of 2010 she just had to bring one home from the Strongsville Home Days.  Um.  Not happy.  And the damn thing is still alive - WTF people.  However, at that time, Ed was on a mission to keep the stupid fish living...  He did a great job.  I mean, seriously, who has a carnival fish for 18 months?!  But, the Demon Seed really stepped up yesterday and did what she needed to do.  For that, I was grateful! 

To my incredible family - You all know you are the bomb, what would I do without your unconditional love and support - who would help me drive the Demon Seed to and from every corner of Strongsville?!  Thank You....  and I love you all dearly. 

So, if anyone is still reading this thing - I wish you all a happy, and most importantly, a Healthy Holiday Season and New Year. 

MK...........   and always, always, Edward James

And if you are looking for volunteer opportunities in the New Year - Join our fight, won't you!