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 29, 2011

Tribute To a Great Man and Some of Ed's own Words

Thank you Terry for writing this tribute to Ed.  He was an amazing person and I'm missing him more than words can express.

Well, it appears the link will not work...  I, of course, do not know how to fix that..  so, if you just go to, you can google Ed's name, and this article should pop up.

Yesterday, was by far, one of the worst days to date...  I knew this would happen, but truly thought I'd handle it better than this.  There are several of us who need to get his final arrangements finished so we can move forward and just let things be...  It is definitely not happening fast enough, but again, we know that the legalities of such matters take time.  Time right now is not my friend, I want to fast-forward to a point where the constant pain in my chest is much less and that only good things are remembered.  However, I also know that one should never wish away time because my sweet Edward surely didn't get enough of that.

Addendum 8/30/2011:   As I was looking through old e-mails from Ed, I found the following...  The relief I felt after reading his words cannot even be explained...  This was at a time very early in our relationship and Dar & Hal thought we were moving just a little too fast, LOL.  Enjoy!

Wednesday, June 14, 2006 10:58 AM

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"Good morning my beautiful woman. I was just thinking about what you had said Hal & Darlene had felt. I started to feel a little bit sad but that is their feelings and they are entitled to them. It made me take a minute and view what they see from their eyes. So that is what I tried to do and I can see how they feel that we are moving so fast and that this may be just an infatuation. What I don't think they realize is that we have discussed just about everything and that we know that our lives have many complicated factors. We often say how scary this is. For me I try to live my life one day at a time and if I tried to tackle every issue at once I would drive myself crazy. That doesn't mean to say I don't care about the future or want to address the future. I can only prepare for the future the best I can. As I look back at these last 2 months with you I can honestly say to you and to myself that you and I have addressed the issues that have come up and may come up. You and I haven't hurried into decisions and always talk them out. Unlike if we were younger, we know things will not always be perfect and I think I can speak for both of us by saying that when obstacles come up we don't run away. What Hal & Darlene's concerns are is what great friends do. They want to look out for your best interests and make sure you have looked at all scenarios. As for me, I love you so much. You are my trusted best friend, my partner, my lover and everything I could ever want in a person. You are who you are and I love that. I would never want to make you do anything you would not want to do yourself. I'm glad I can be so open with you and know in my heart and in my mind that you came into my life for a reason. I may not know the exact reason only that you have made me whole. Your EJD XO "

What can I say - we were truly best friends from the very beginning, we took our time getting to know each other extremely well from Jan. thru April of 2006 - thinking only a friendship was developing, little did we know that it would turn into so much more - but turn it did, into something even more extraordinary than a great friendship - it was my honor to be all to him that he was to me... as he stated..."trusted best friend, partner, lover and everything I could ever want in a person".   My future was so wrapped up in this man and our love, that I will remain quite lost for sometime to come...  But never would I change one single minute with this man. 

Friday, August 26, 2011

Sincere Thank You

As I have been overwhelmed this last week, I have not started working on the many, many Thank You notes that need to be sent.

Every day this week, my mail box has had no less than 6 cards each day - personal gifts dropped off - dinner delivered to me twice - and countless other messages by phone or e-mail;  I just wanted to let you all know that it is greatly appreciated and such a tribute to what a great man Ed was, and continues to be on the other side.

My family - you rock in ways that cannot even be explained, you know who you are....  We are so lucky to be blessed with such a loving, warm, funny and supportive family.   There is not one of you that I do not love unconditionally and I would do anything for all of you - this includes my Barsa Boys  as well...   Thank God for you all.  You will all get Paige and I through this sad and grief filled time.

Our friends - gee, you rock in ways that cannot even be explained, you know who you are...   I mean, you are more than friends, you too, are family...  Ed and I enjoyed every minute we spent with you all these past 17 months...  your support and friendship made this battle bearable and brought us so much laughter at a time when it could have been hard to find - it was not, there was always joy and love.

To the Pella Peeps - you need to wear that logo - the support you showed Ed was amazing.  He loved his job, he was so sad that he couldn't come back to work.  Each one of your cards and the number of Pella people who came to the wake (I cannot believe that was one week ago) was incredible. 

I will get to the official Thank You's soon, I promise, just please be patient and know that every card, phone call and private message is greatly appreciated.

I miss him terribly and every night at 10 p.m. when my phone doesn't ring, things just don't seem quite right in this world.  I feel like he is just at his Brooklyn house, as we only lived together 50% of the time.  Ed spent 7 days in Brooklyn, then 7 days with Paige and myself in Strongsville...  Surely not the ideal living situation, but Ed would never have taken his children out of their environment and, of course, we thought it would only be that way until 2014, when we would have gotten married.  In some ways now, I think it was a blessing that I only had him every-other week, the alone time doesn't seem as bad as I thought it would.  And, ironically, it's not so much the not "seeing him" as it is the not "hearing him"...  God I miss that booming voice, which would just piss Paige off to no end in the mornings when he would be on the phone with his friends.  You just keep thinking, I want five more minutes just to talk to him...  just 5.  Not to be.

So, thank you everyone for your continued love and support....   I promise something will be coming in the mail soon.

Peace, MK

Thursday, August 25, 2011

Crab and the Fish

A look back to the beginning....

Tuesday - April 26, 2006....    Here is an excerpt from an e-mail I sent to Ed;  Mind you, we only officially hooked up on 4/21/2006, so we were 5 days into our romantic relationship...   I am the Crab and Ed was my sweet Fish...   We continued to joke about how true the following was over the next several years.  We were so compatible and, although neither one of us is big into astrology, we thought it was pretty accurate...   Enjoy.

"Cancer and Pisces are both Water Signs. Since Water is
a tangible, physical entity, Cancer and Pisces are
generally very compatible. Pisces are in this world to
create human connections (
um, that is so Ed - he lived to connect people),
 and when they come together
with Cancerian intuition and nurturing, there is no
stronger bond. So that this union does not wash out in
a stream of romantic idealism, Cancer's stable view of
life holds them afloat. And it's not a case of Cancer
putting up with a dreamy Pisces mate: Cancer really
understands emotional ambiguity and can help Pisces
stabilize their ephemeral nature. Though Cancer could
grow weary of their Pisces mate's faraway nature, and
though Pisces could be bothered by Cancer's
centeredness (oh, my, yes - I could be very selfish sometimes,
but worked hard on it for Ed), it's easy for this pair to find a
compromise (
and it was easy for us).

Cancer is a Cardinal Sign, and Pisces is a Mutable
Sign. Though intuitive, in love, as in life, Cancer
likes to get things moving with a good idea and a
solid plan, and they'll write it all down to keep
track. Pisces, on the other hand, is more about going
on instinct; they'd lose that plan as soon as Cancer
handed it to them! Cancer needs to give Pisces the
freedom to enjoy their external interests and to
occasionally follow a whim undeterred. Pisces can show
Cancer that completion is sometimes better than
initiation, and that compromise without struggle can
pay off. Cancer and Pisces feed off of each other's
energy well, and should be completely compatible in

What's the best thing about the Cancer-Pisces love
match? Their similar emotional natures. Both have a
great capacity for emotion and compassion, and both
can act as teacher AND student. They complement and
harmonize with one another very well. The overall
empathy and commitment that these two Signs value in a
relationship is what will keep the ties strong and
long lasting between the Crab and the Fish."

Forever my favorite Pisces....   Ironically, however, four of my very best girlfriends are Pisces and 3 or 4 of Ed's best male friends are Cancers - pretty funny if you ask me..........    Peace, mk

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

Thursday, August 18, 2011

The battle has ended and now he can rest without pain. Thank you to all who have been reading and praying for us along this tragic journey.

My heart is so completely broken right now that updating you all on the events of the last 9 days would be too entirely exhausting.

Know this, he went away very peacefully and had no pain the fast few days.

I am forever changed both good and bad because of this experience. I am the luckies gal on this planet, he picked me to go along for the ride, and believe you me, he could have anyone he wanted. He was THAT special.

Sunday, August 14, 2011

Sunday 11 am 8.14.11

Hospice decided Monday is not a "go home" day, possibly Tuesday now.  He slept for the last 24 hrs., made it through the night sleeping, but also slept the entire day yesterday.  He is now at a point where he is very confused and cannot really hold things in his hands.  My heart aches in ways I didn't know it could.  Michael O is taking care of him now while I'm home for yet another quick shower & back to his side.  Thank you all for the kind thoughts & prayers, it is appreciated.  MK & Ed xo

Saturday, August 13, 2011

In Hospice Now

Well, It looks like Alice Cooper was making Ed hold strong there this last week.  After the show & the meet and greet - Ed slept, Ed slept until Wed. night, almost 24 hrs.  Then he proceeded to have a panic attack in the middle of the night / early Thursday a.m.   We took him to hospice on Thursday, early afternoon, and he is there resting now.  I am only home for a quick shower & brief updates to messages left on FB, so am not going into detail as of now.  Just know this, he is a much loved man with no less than about 25 visitors every day since Thursday afternoon.  I am so tired, but I don't like being away from him for more than a couple hours...   He is my heart and I just want him to be at peace...   There is a chance he can come home on Monday, but will need round the clock care just to ensure he doesn't fall.  I am so sad I cannot take FMLA and take care of him, but I will do the best I can to juggle it all - isn't that anybody would do really?!  So, gotta blow my hair dry & throw on some make up.  Love to you all who I know are praying for him and his loved ones....   Peace, and as always, good health - MK & Ed.........   xoxo

Wednesday, August 10, 2011

8.9.11 Alice Cooper, Akron Civic Theatre

It's very late - all I can say is I am the newest Alice Cooper fan.  What an outstanding show, and more important, what an outstanding man.  (Ed likes to call him Vincent Fournier - I doubt I spelled that correctly - but that's his given name).   I loved sitting in the front row with my sweet man.  His adrenalin kicked in when Alice hit that stage and he hung in there for our private meet & greet.  Thank You just isn't enough.  But, Thank You to the staff at ACT - they could not have been nicer.  Seriously a great show...  Oh, I will see him again live - Fantastic is the word of the night.

Rob & Darcy, we couldn't have done it without you.  You are the true meaning & spirit of friendship...  The wheelchair was a god-send and your presence was very much needed to make this night the success it was.

The fact that I am still awake at 1:47 a.m. says quite a bit about the night.  The adrenalin is obviously quite high in MK too.  Hm, third person - that's never good.  I will go into more detail later this week.  Just trying to get some pic's on line in case Fox 8 does a follow-up story - they couldn't come to the show because the meet & great was after the concert and it was too late.

Love & Peace, and most importantly, good health & friendship to you all.   xo xo Ed & MK

Friday, August 5, 2011

August 5

Hi everyone, I know a lot of you were anxious to find out what happened this week.  Well, it wasn't good news.  The stint could not be placed endoscopically on Wed. due to the area being to compressed by the pancreas and the tumor.  Option was to have a drain placed through his side to let the bile drain into a "bag", however, it would not change his appetite, his pain levels, his ability to sleep and the risk of an internal infection is very low right now - in other words, all it would do is make him not yellow & alleviate some of the itching caused from the bile seeping out through the skin.  Shit, he could be pink for all I care.  So, we are sitting on the decision for now.  Placing the drain would leave him with an open hole and this is not something we are quite ready for.  Unfortunately, the ERCP did identify that he has a stomach ulcer due to the amount of motrin he has been taking, so he is off motrin for now in hopes that this could heal.

His pain medication was re-adjusted yesterday and we are in the process of having hospice visit him, possibly, on a daily basis.  We will also be getting him a wheel chair so if he does want to get out of the house for a while, he won't have to walk and I think that will give him some incentive to stay a little bit active.

His physician and nurse were a little astonished that he still drives as much as he does, but I explained to them that he is very stubborn and isn't quite ready to relinquish a lot of his independence.  His weight is a scary 143 lbs. and watching him waste away has, by far, been the hardest thing I have ever endured in this lifetime.  I feel for the families who have endured this horrific disease.  I know, my life is forever changed, some ways bad, some ways good. 

I am feeling very bitter these days - but, family and our friends make this journey bearable for me.  We have been blessed with outstanding friendships and have been able to make more as we have been on this path.  Most of you know who you are. 

We will keep you all posted as we move forward, but am saddened to say that the news from this point on will probably be of a sad nature.

All I know is - Alice Cooper is waiting for him this Tuesday and come hell or high-water, I know he will try to get himself to a point that he can at least make the show for a little while.  I figure with the wheel chair & his meds adjusted, and maybe some help from his herbal supplement, we will find a way to make it work.

And, on a side note, Stefanie M. from the Pancreatic Cancer Action Network, Cleveland Affiliate, is working hard on our first ever "Casey Coleman Day" down in the Muni lot on September 25, 2011 before the Browns/Miami game - so if you are a tailgater, please find us and come pick up a free gift, get informed and see how you can help us in our battle!

Peace, MK & Ed

Tuesday, August 2, 2011

One of the worst weeks yet

Hi everyone - We have just gone through, what I think, has been one of Ed's worst weeks yet.  His pain levels are unbelievably high, his weight is astronomically low and the jaundice is very prominent.  I should have made him go to the ER on Friday, maybe then we could have had the shunt placed already and he could be putting some much needed weight back on.  My fear now is that he won't be able to handle the procedure very well and lord knows what will happen next.

CT done on Monday 8/1 - trying to get the procedure to have shunt put in for Wed. 8/3 - however, seeing that it is already 3:25 p.m. on Tuesday - I don't have a good feeling about this.   I tried to explain to the oncology staff this morning that he IS STARVING TO DEATH and that it was URGENT.  Same as I did last Friday, but, ya know, whatever....    Needless to say that not being with him this week and dealing with the ever-so-slow health care system, I have lost it.  I mean, we all knew it would happen eventually, and I think I hung in there pretty well for the past 17 months.  I am toast.  Stick a fork in her, she's done.  Nerves, shot.  Emotions, over the edge.   This past week has seemed like an eternity.   Here is what I hope for, that Ed can have his procedure and have enough time to recover to, at the VERY least, get to see Alice Cooper next week.  He has been so excited about this - truly, if we just make that we will be lucky.

Thank you to everyone for your messages and posts, they are appreciated and are what help me get through. 

A very special shout out to Rich & Peggy Hovan of Brookway in Brooklyn.  They were kind enough to give, yes give, us a hospital bed and Rob & Cigar picked it up and brought it to my house yesterday - we are already for some serious recovery.  Ed is also getting a hospital bed at his house and we are hoping this will help with recovery from the procedure and with controlling his pain levels.  The Hovan's couldn't have been nicer and I truly enjoyed meeting them - I loved telling them that I have some very dear friends from their street, it was most definitely a "brooklyn" moment.  So, thank you Hovan's, it is very much appreciated and we will honor your request to pay-it-forward when the time comes.

So, maybe a shunt tomorrow, maybe not....   Will continue to keep you all posted.  MK