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

Thursday, September 29, 2011

Purple Light - November 20, 2011

volunteer for progress during
National pancreatic cancer awareness month in November

Cleveland, OH (November, 2011 ) - The Cleveland Affiliate of the Pancreatic Cancer Action Network, the national organization creating hope in a comprehensive way through research, patient support, community outreach and advocacy for a cure, is raising awareness about the fourth leading cause of cancer death in the United States during National Pancreatic Cancer Awareness Month in November.  Local leaders of the organization are inviting more citizens to Volunteer for Progress by joining their efforts to advance research, support patients and create hope for the pancreatic cancer community.

 “Pancreatic cancer is among the deadliest cancers in our country with a five year survival rate of just six percent. Volunteers with the Cleveland Affiliate of the Pancreatic Cancer Action Network are doing their part in helping to support the Pancreatic Cancer Action Network in its bold new goal to double the survival rate for pancreatic cancer by 2020. The Cleveland Affiliate is intensifying its efforts to raise awareness in the community, host fundraising events and contact our elected officials to gain support for the Pancreatic Cancer Research and Education Act (S. 362/ H.R. 733),” stated Megan Graham, Volunteer and Event Coordinator, Cleveland Affiliate.  “But, we need help. We need more members of the community to join our efforts and Volunteer for Progress. Together we can know, fight and end this deadly disease.”

All members of the community are invited to participate in the following activities during National Pancreatic Cancer Awareness Month:

  • PurpleLight - On November 20, 2011 the Cleveland Affiliate of the Pancreatic Cancer Action Network will join thousands of people across the country to participate in one of over 45 PurpleLight Vigil for Hope events. The candlelight vigil will honor those who have fought pancreatic cancer and celebrate the survivors, while raising community awareness about the disease. To register, and submit the name you would like read during the ceremony, please visit

  • Tempur-Pedic® 2011 Hugs Back Campaign: Feel the Difference. Make a Difference. -  During the month of November Tempur-Pedic has committed to contribute $10 to the Pancreatic Cancer Action Network for every individual who tests a Tempur-Pedic mattress at a participating authorized retailer. To find a retailer visit
  • Z Gallerie Awareness Month Shopping Weekend – In memory of Shirley Zeiden, mother of the company’s founders, Z Gallerie will donate 10 percent sales from November 5 through November 7. Shop or find a store near you at
This year, over 44,000 Americans will be diagnosed with pancreatic cancer and nearly 38,000 will die. In fact,
74 percent of patients die within the first year of diagnosis. The survival rate has not substantially improved in over forty years because early detection tools and effective treatments have yet to be developed.  Despite these sobering statistics, just two percent of the National Cancer Institute’s (NCI) federal research funding is allocated to pancreatic cancer. Once enacted and fully funded, Pancreatic Cancer Research and Education Act (S. 362/ H.R. 733) will ensure that the NCI develops a long-term comprehensive strategic plan for developing early diagnostics and treatment options that will increase the survival rate for pancreatic cancer patients.

Pancreatic cancer has claimed the lives of many public figures, including actor Patrick Swayze, Carnegie Mellon University Professor and author of the Last Lecture, Dr. Randy Pausch, actor Michael Landon, and opera tenor Luciano Pavarotti.

To learn more about the Pancreatic Cancer Action Network and the Cleveland Affiliate visit:

About the Pancreatic Cancer Action Network

The Pancreatic Cancer Action Network is the national organization creating hope in a comprehensive way through research, patient support, community outreach and advocacy for a cure. The organization is leading the way to increase the survival rate for people diagnosed with this devastating disease through a bold initiative —The Vision of Progress: Double the Pancreatic Cancer Survival Rate by 2020. Together, we can know, fight and end pancreatic cancer by intensifying our efforts to heighten awareness, raise funds for comprehensive private research, and advocate for dedicated federal research to advance early diagnostics, better treatments and increase chances of survival.


Mary Kaye Mackulin
Media Rep – Cleveland Affiliate
Pancreatic Cancer Action Network

Tuesday, September 27, 2011

Fund Raiser in Scottsdale AZ with Jim McMahon

If anyone reading this lives in Scottsdale, AZ - You should get a ticket - support this fund raiser - and you will have a BLAST.  I guarantee it - if you don't have a blast - I will refund your ticket price. (Actually, no I won't - if I could I would, but if I could do that - I'd be at the fund raiser myself!)

Thursday, September 22, 2011

Broken Heart

Well, I know that it is going to shock NO ONE, when I say my heart is just so broken right now.

I will be going to get Ed's bowling shirt tonight, and so do NOT want to go into HIS house.  I know I am going to encounter sights that will just kill me, but again, I need to muster up the "it is what it is" 'tude.  I guess I'm thankful that I can even get the shirt, I'm going to have it matted & framed with a picture of him & Dickey.  Then I'm hoping Greg can hang it somewhere at the lanes.  I think everybody would really enjoy that - I know Ed would love to be hangin' out at Dickey's Lanes with his friends.

I am missing his voice more than ever right now.  I know this will pass, but it's not passing quickly enough.  It is funny, Ed had a very strong feeling about how things would occur once he passed, and so far, almost everything he thought would happen has occurred in the past 5 weeks.  It's funny how people's tunes change when cold-hard-cash comes into play.  I would love to say that if I received a big fat gov't check that I'd be fine and oh so "life is good" - but I doubt it would matter.  It was never about money or stuff with us, it was always about time - the only thing he truly did not receive enough of.   He always knew that when I called him (or vice-a-verse) it wasn't to say - "hey, I need...."  it was always just to hear each other and catch up on our day and be supportive of what the other was going through at that particular moment.  We truly just enjoyed the hell out of each other, it was rare, it is gone.

The angry, bitter taste I have in my mouth will eventually fade away and this constant feeling of vomiting will also eventually be gone....  however, some feelings I have, I know I will have forever.  For all the love, joy and happiness Edward brought into my life, the flip side of what he introduced me to has been one of the ugliest things I have ever witnessed and nothing can change that.  I will probably never trust anyone again, 'cause that is just how I role.  I certainly know that finding someone I get along with that well again, is about a 1 in a gazillion chance.  So, I just get out of bed every day, breath and move forward, slowly, but still forward.

So for every person who continues to remind me how strong I am - I am not.  I am just normal.  I fought for Edward because I loved him unconditionally, he is gone, there is no more fight left in me right now.  Strength will come again, and I will continue to battle this f'ing disease, but right now I am exhausted, physically, mentally and emotionally. 

Sunday, September 18, 2011

I Love Carrie Bradshaw

Sex In The City Episode - The Thank You Note....   Carrie Bradshaw is sad about Big marrying a younger, more sophisticated woman...  Ah, but you cannot buy brains people, she receives a thank you note from Natasha (I think that was her name) and the note contains some of the following...  Thank you for coming, sorry I couldn't be "their".  Carrie calls one of her friends, Miranda I think, and says it's a good thing she found someone to take care of her, cause she's an idiot!   I recently read a sentence that reminded me of this episode, it was written something like this: "The Smith's are going to get there own house and we are going to move there belongings"  Life imitating art, oh my yes - easing some of the pain of what has gone down in the last 4 weeks, oh my yes!  And, like Carrie, I laughed quite hard.

My love, I know you must be cringing up in heaven right now about things that have occurred since you passed away - but I am going to try and go with the "it is what it is" attitude.  And, you knew better than anyone, you cannot help someone that doesn't want your help.  I tried, I was shut out, I walked away.

My heart aches every single day for you, but you might like to know that someone at the Gremm's house yesterday thought I was Jimmy Pope's "wife" - we had a huge laugh about it!  I know you would have thought that was very funny.   Getting to see Krissy & Raul in from Dallas and having some authentic Texas brisket made for a lovely evening on your 1 month anniversary....  ILYVM, always  me xoxoxo

Monday, September 12, 2011

Looking back on his FB page

Thank you my love for your gift of words...  I continue to search for anything and everything you ever wrote to me, it reassures me everyday of what we had...  others remind me, but each day you are gone, I seem to forget just a tiny bit.  This helps so much.

‎5 years ago today I began a relationship with the woman of my dreams. She is the strongest woman I know and I can only hope that I will be able to say "I love you baby" in another 5 years. MK you keep me fighting every day of my life.
Happy 5 year Anniversary,
Your EJD.
· · April 21 at 7:15am · Privacy:Shared with: Ed's friends

  • April 22 at 7:39am · · 1 personLoading...

  • MaryKaye Mackulin O.K., So - I was not at a computer ALL day yesterday.... 3 meetings in the a.m., then a surprise & unplanned anniversary lunch, then Oncology appt, then Pancreatic Cancer meeting... So, I just saw this now and it made me cry at work... I luv you back baby, more than the sky and moon... Our journey has been the BEST... Ups and downs, oh my yes... worth every second... oh my yes! Thanks Everyone! xo
    April 22 at 10:22am · · 2 peopleLoading...·

  • Judy Roskavich Mackulin Thank you Edward for making my daughters life wonderful - and her making yours wonderful too. Happy 5 yr Anniversary . XOXO
    April 22 at 6:47pm ·

Addendum - Found this from May of 2010 - just after we received the horrific news that Ed had PC, Stage III - we still had hope at that time:

  • Friends, family, fun and sun. A great weekend to be out fishing but an even better weekend hanging with the people I love. With that being said, I'm going to be around a long time and appreciate everyone reaching out to me but please reach out, be with and tell those near to you how much you love them. Do not put it off until tomorrow because tomorrow may be too late. Wow, that was a long paragraph. ;)

  • · · May 30, 2010 at 5:36pm · Privacy:Shared with: Ed's friends

    Back from an East Harbor Weekend that was full of fun, go karting, drinking at the poolside bar at Monsoon Lagoon, sun and alot of wind. Did some fishing and had a great time with my friends and my MK. Leaving for GEM Beach in 3 days. Yay me!!!  (So sad, he was so excited about this trip & um, this vacation turned out to be a complete disaster, and right after this trip Ed put me on my "break" - ah, good times)
    · · July 19, 2009 at 9:44pm · Privacy:Shared with: Ed's friends

    • You like this.

      • MaryKaye Mackulin You are too adorable ;) Cannot wait to head back out to my harbor & GEM beach with the Stalter Family whom I love dearly! Oh, and YOU too! It was a GREAT weekend... ILYVM... me Oh... and getting to see Darlene's kids' reaction to catching their first fish(es)..... priceless!
        July 20, 2009 at 10:12am ·

      • MaryKaye Mackulin Oh, yeah, we need to share this... Monsoon Lagoon was going to shut the pool bar on us Sat. cause we were the only 4 adults "drinking"... we talked them in to staying open 3 more hours & made it worth their while!!! Me & Dar Rock!
        July 20, 2009 at 10:43am ·

  • Hypocrisy


    [hip-uh-krit-i-kuhl] Example SentencesOriginLike this word?
    [hip-uh-krit-i-kuhl] Show IPA
    of the nature of hypocrisy, or pretense of having virtues, beliefs, principles, etc., that one does not actually possess: The parent who has a “do what I say and not what I do” attitude can appear hypocritical to a child.
    possessing the characteristics of hypocrisy: Isn't a politician hypocritical for talking about human dignity while voting against reasonable social programs?
    hyp·o·crit·i·cal·ly, adverb
    un·hyp·o·crit·i·cal, adjective
    un·hyp·o·crit·i·cal·ly, adverb

    Sometimes when you burn bridges by saying bad things about people, you cannot re-build those bridges.  Sometimes it is just too late, because then you just come across as a hypocrit.  I've done it, everyone has, but I guess it comes down to learning not to do it again, simply saying you're sorry; change your ways; repair the bridges while you can.  Otherwise it might just be too late.  

    Tuesday, September 6, 2011

    20 Days Later, who is reading this

    I am a bit surprised to see the number of "hits" this blog remains to get on a daily basis; I mean, Ed's fight for life has ended, but his battle against that f'ing monster PC continues, is that maybe why you are all still reading?!  I really cannot guess.

    I'd love for people reading to post a comment, just to get an idea of what is going on in your heads.  I am really perplexed by this.

    I cannot believe it's been 20 days since Edward James took that last, labored breath.  Sometimes I feel like it's been forever, sometimes it seems like a mere moment ago.  All I know is that my heart is broken into a million pieces;  I will not post what other people are feeling or thinking, because I am not them.  This doesn't mean that his family and friends are not dealing with his loss just as deeply, and, I'm sure, it is just as hard for them, but this blog has always been about Ed and myself and our journey.  I kept most other family/friends out of it unless it was something specific, not just an assumption of feelings or thoughts.  I will not write for my child (much) or his children, I never have.  I think somehow that has come across as that they are not important or were not involved in the journey, if you have thought that - you are wrong;  I cannot speak for them, I could speak, however, for Ed and myself.  So, there you have it.  This was "our" story as a couple - not about anyone else;  I could write a blog, I suppose, from other peoples perspective, but it would be a lie, 'cause I don't know their perspective.  So the continued comments and implications that have been put out their about certain people being treated unfairly or as unimportant, are incorrect and those are assumptions, and well, we all know what that means.  Again, I reiterate, Ed chose who he wanted involved in what - HIS wishes, no one else.  And again, I reiterate, if you didn't communicate with him or contact him in the last 17 months, then where do you get off on making any comment at all ....    Funny how people think they can speak for him now that he is not here to defend himself and he cannot disagree with what's being put out there.

    I knew him better than anyone, some people don't seem to like that much, but it's the truth.  We communicated openly and honestly about everything, from day one;  there were no awkward silences when questions were asked, we just answered.  Sometimes the answers wouldn't come immediately, but they always would in time.  Ed put me on break once for about 3 weeks in the summer of 2009, during that time he sought counseling immediately to make a decision about our relationship.  Needless to say my heart was completely broken, but he didn't wait on getting help - not a lot of men would do that.  He called my every night while we were on that "break", but it didn't sooth me (this was prior to his diagnosis, obviously) cause I always felt like he was throwing away time that we would never get back.  I still feel that way today.  But in those three weeks (which, mind you, two of them we wouldn't have been together anyway, so really, he put me on a 7 day break which I still hated) he realized that he did want to spend the rest of his life with me and that 3 weeks of not seeing each other was more than he could bare as well.  I lost quite a bit of weight at that time, I was sick to my stomach that entire separation period.  But like I said, he didn't take it lightly, he sought professional help immediately and he found his way back.  That is an extra special man my friends!  If everyone was willing to admit when they needed a little help & seek it & take it seriously (that is key), how much better off would this world be.  I myself will probably be seeking grief counseling soon, but right now I still feel like there are a million things to get finished, and then again, maybe I won't - time will tell.  I have no problems spilling my thoughts to friends & strangers alike - um, hello, this blog for instance...  I am honest to a fault, my heart and mind are an open book, and communication is something I value very much.  I had a 13 year relationship with someone who just couldn't communicate and talk to me (oh, and lied to me, a lot)...  I learned from that experience at a very tender age that I could never and would never spend time with someone like that again - be it "friend" or more.  You cannot waste your time and energy on people who are not willing to communicate with you on an open and honest level (my own kid has this problem right now).  And, it doesn't have to be verbal, writing things and feelings down is sometimes easier, but it is just as important, because it is still open and honest communication.  So, if you love someone, make sure you let them know - don't assume they know, they don't.  And, if you are not being told you are loved by someone you love, keep working on the communication - I guarantee you, it is worth it.  

    Believe me, when you communicate, the reward is more outstanding than you could ever imagine, and I was able to experience that for close to 6 glorious years. 

    So, again, I don't know who is still reading this or why - but there you have my thoughts on day 20 without the man of dreams sharing this planet with me.

    Peace - MK