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, January 30, 2012

Jan. 31, 2006 E-mail Exchange

Here is an e-mail exchange between Ed and myself from exactly six years ago...   I was worried we were not going to have the money we needed for the deposit on the hall for our reunion, and I joked that I'd have to go out and hook for the money.  The following is regarding this issue...  when you read the last e-mail from Ed, I think on some level, that's when I KNEW he had the potential to be "The One" - that was exactly the sense of humor I needed coupled with being an adult...  Just the exact right mix of fun & work....  That was us.!
 -----Original Message-----From: Marykaye Mackulin > Sent: Tuesday, January 31, 2006 11:57 AM
Subject:  Bad News,
Well, Here is our biggest problem, Brookridge wants a
deposit of $XXX when we sign the contract - If we
could get at least the committee members to pay
their fee right now, then we can cover the deposit (with
me putting in $ XXX up front - that's all I can afford
at this time). You guys have to let me know ASAP if
you can get me a check so I can re-contact Brookridge
and set up a date to sign the contract with the $$$!
I was going to do it this Sat., however,
I doubt I'll have $XXX by then.
Maybe I can go work the corner for the good of the cause!
Mary Kaye - Bearer of Bad News!
 From: ED DEMYAN  wrote:
I think you'll make more than $XXX as long as it's
not the Spudnuts corner. :) LOL Should I mail you a
check or are you going to be around the Brooklyn
area so I can get you the $55?
From: Marykaye Mackulin
Sent: Tuesday, January 31, 2006 1:01 PM
Subject: RE: $$

Ed - We must have crossed e-mails, don't worry about
the $$$ till March 3 meeting, if you cannot make that
meeting we will catch up with the $$ the next time.

It's all good - No corners for me this year! MK :)
Sent: Tuesday, January 31, 2006 1:21 PM
To: "Marykaye Mackulin"

Glad to hear you're not working the corners. I know it's glamorous and all but it's hard work. :)
I will see you at the March 3rd meeting and pay up. Thanks, Ed

"I know it's glamorous and all but it's hard work"... OMG, How hilarious is that !!!  And, so we continued getting to know each other with every e-mail, every phone conversation and every little get together over the next 90 days until that infamous night at the Mad Cactus on 4/21/2006....   After this e-mail exchange, I saw him on February 3rd at the Parma Tavern to see the band The Dynasoars....   He wasn't supposed to be there - but he showed up anyway...   He walked me to my car that night and I distinctly remember being a little bit disappointed that he didn't try to kiss me...  That did not happen until the Mad Cactus night...  When he uttered his infamous pick-up line....   "I'm gonna get you drunk tonight"... in which I replied "You don't have to!"   And then he admitted he wanted to kiss me way back in Feb. at the Parma Tavern, but was afraid that I didn't "like him like that"...   Which is o.k., it all happened in it's own good time! 

Such romantics huh... yeah, not exactly the stuff of great poetry, but as honest and as sincere as it gets!  And as most of you know, from 4/21/2006 up until his last breath on 8/17/2011 we talked every single day, usually 4 times a day (or more)....   RIP Baby, missing you as these anniversary dates have arrived....  You are in my mind and heart always. xo

Friday, January 27, 2012

Hideki Kinoshita Runs for Pancreatic Cancer and 9/11 Victims

Ultra-marathoner raises money for charity, follows passion for running

Kimberly Bogin's photo
Running Examiner

People run for different reasons--to get in shape, qualify for Boston, relieve stress, or maybe just look good in a Speedo. Hideki Kinoshita (aka Kino) runs for money.
No, he’s not a professional. In fact, Kino calls himself an "average Joe” runner. You know, the kind of average Joe who raises $50,000 for charity, running 63 marathons and 19 ultra-marathons, including three 100-mile races and three 24-hour runs all in the span of 39 months. Running may be Kino’s passion, but giving back is his calling.

“Knowing that I am running for a cause that is greater than myself allows me to find that extra strength to dig deeper when I am experiencing the most pain,” he said.
Having lost two loved ones to pancreatic cancer, Kino has done a number of runs for the Pancreatic Cancer Action Network (PanCan). “I try to select charities that support causes which are heavily under-supported and under-funded, like PanCan,” he said.

Last September, Kino earned more than $5,000 for another less publicized charity, the World Trade Center Health Program. He raised funds by accepting per-mile pledges while competing in the USA Track & Field National 24-Hour Championships, where he amassed a personal record of 104.79-miles, and placed 29th overall.

“As someone who was born in New York City and raised nearby, I wanted to give back by helping those who helped us on September 11: The 9/11 First Responders. They’re heroes in my eyes,” he said. “They risked their lives in order to safely evacuate thousands of innocent bystanders and they continue to suffer from a host of airborne diseases and cancers.”
Kino wasn’t born to run. In fact, he couldn’t stand running for the first 28-years of his life. “In high school I lettered in soccer, basketball, and baseball, but hated running with a passion,” he said. “Until 2007, the furthest I had ever run was two miles and that was for Army ROTC training.”
Then Kino watched a friend run the 2007 New York City Marathon. “After seeing people old enough to be my grandparents and seemingly more out of shape than I was run that race, I took it upon myself as a challenge to complete my first marathon,” he said.

In September of 2008, Kino ran the Yonkers Marathon. Like most first timers, Kino experienced the suffer-fest that can occur over 26.2-miles. “That first one was my most difficult road marathon. I finished third from last in 5:00:15 and was almost cut off due to the race’s five-hour time limit.” Fortunately, the race organizers let him cross the finish line, and Kino found his new passion.
Within two months of Yonkers, Kino added the Chicago Marathon and the Philadelphia Marathon to his resume, unknowingly qualifying for the international club known as the Marathon Maniacs in the process. To earn membership, a runner must complete a minimum of three marathons in 90-days. Less than three years later, Kino reached the club's top level, 10 Star Titanium, achieved by running 30 marathons in 30 different states or countries within a single calendar year.

“In general, I feel that what stands out about my running is my ability to recover quickly and avoid injury. I'm not fast, but can run a lot of races,” said Kino. “I can't count how many times my body has been able to exceed what I thought it was capable of, in terms of how far and fast I have been able to run, to recover quickly, and repeat the process again and again.”
In 2012 Kino will continue to race and raise money for charity. In June he’ll complete his 100th 26.2-mile or longer event when he runs the famed Comrades Marathon in South Africa. But he won’t stop there. In 2013 Kino hopes to find a charity sponsor as he attempts to set a new Guinness World Record for finishing the most 100-mile races in a year. The current record is 25.
“Running 26 100-milers will be an almost impossible task, considering that I have to make the strict cutoff times for each race,” Kino said. “I’d put my odds at being able to complete the task at about 10 percent, but it will definitely be worth trying.”

Even if Kino doesn’t set the record, he’ll still earn thousands of more dollars for important causes like cancer research and the heroes of September, 11. Kino may consider himself an average Joe runner, but to the people he’s helped through the money he’s raised, Hideki Kinoshita is one of the elites.

Tuesday, January 24, 2012



SATURDAY - JUNE 16, 2012



The Pancreatic Cancer Action Network, a national organization creating hope in a comprehensive way through research, patient support, community outreach and advocacy for a cure, announces PurpleStride Cleveland 2012.  The 5K run/2 mile walk will promote awareness and raise funds for pancreatic cancer research and takes place on Saturday June 16, 2012 at the Cleveland Metropark Zoo.

This community event is planned entirely by local volunteers and everyone is welcome to participate.

Pancreatic cancer has the lowest survival rate among leading cancer killers and has claimed the lives of many public figures, including actor Patrick Swayze, former American Medical Association President Dr. Ron Davis, Carnegie Mellon University Professor Dr. Randy Pausch, actor Michael Landon, opera tenor Luciano Pavarotti, famed journalist Dith Pran, NFL Players Association President Gene Upshaw and Clevelands own Casey Coleman to name just a few.

Friday, January 20, 2012

Want -vs- Need

So, the other morning I get to work and find out that my place of employment is having a surprise visit from the government accrediting agency that can make or break my place of employment.  O.K., we knew that we were in the window for our survey - although you don't know "exactly" when - but still, when the Federal Gov't shows up on your doorsteps, it's a bit unnerving.  I immediately stated... "I NEED a donut" to get through these next few days.  We all know I didn't really NEED a donut - but I WANTED one - very much!  I'm fortunate enough to work with some outstanding folks - next thing you know, we had a dozen donuts in our office.  And I partook in my donut delight.  (By the way, we had an excellent outcome for our survey!)

This got me thinking how I used to tell Ed that he couldn't leave me, because I NEEDED him... funny thing was, we both knew that we really did not "need" each other;  We were old enough to know that anything we really had to do in life, we could accomplish on our own.  My goodness, I'd been living on my own since before I was 21 (few trips back to Mom's house for various reasons), I had been a single Mom since the day the Demon Seed was conceived, I had been working full time for 25 years,  I own my own car & home, so no, I did not "need" him.  (Yes, I do get a ton of help and support from my wonderful family, most notably G-ma and Aunt C...  Dan, you are the bomb too!)  If I had to, I could do it alone.  It would be hard and it would be lonely, but I could do it.

Here's the thing...  we didn't NEED each other, but, we WANTED each other.  How flippin' awesome is that.  We WANTED each other - plain and simple.  We were adults, we didn't depend on each other for really anything...  We were both self-sufficient, productive, hard-working grown-ups.  I believe this made our relationship even more special - because it was something we wanted and worked to achieve.  I didn't even know I wanted a relationship until our friendship started to turn in early April of 2006 - and I was scared  - but wow, was it the best.  I will miss him always.

Jan. 27, 2012 will mark the 6 year anniversary of the day Ed showed up at my house for our first class reunion meeting to plan that fabulous 25 yr. event that we had.  I'll never forget the image of him standing on my step...  I opened the door, I looked at him, and although I had seen him several times since our 20th reunion, there was something different about him that day - he looked fantastic - he was in a good place, and he knew it.  That confidence transcended into his physical appearance - he was smokin' hot.  And, quite honestly, I never for a second thought of Ed as "hot" in the 5 years we had known each other prior to that night.  He was just Ed, aka, Eddie Luv.  He was just a nice guy that I kinda knew.   Well, he filled us in on the events that had been occurring in his life and then we got down to reunion business.  That night, Ed stayed and talked to me, for a long time.  For once, I just listened.  I really couldn't say much, as I had never experienced the things he was going through.  He left very late and he thanked me for letting him vent.  At one point during our conversation, he got up to go to the bathroom, touched my cheek and told me I had nice skin.  I was like, um, thanks?!  I thought to myself, that's weird - guys just don't do that kind of thing.  Well, Ed was definitely not "just a guy".   So many of my friends/family know this story...  It is a night I will never forget...  although we didn't start dating until 3 months later - I think inside I kinda saw it coming that very evening.  Not because I needed something to start, but I thought maybe, just maybe, I wanted something to start.  Who knew?! 

I miss you everyday baby - I'll have my dancing shoe's on this weekend because you know I love me some Funk & Motown.  Stevie, the J5, EW&F...  Oh goodness, I can hardly wait!  Looking forward to seeing some good ol' Brooklyn alum as well.

So, hoping you all get what you Want, but have everything you Need.

Peace - MK

Friday, January 13, 2012

I Assume you are going to Judge this

So - Recently, Assumptions have been made, A LOT, and the term Judgemental has been thrown around, a lot...  The funny thing is, everyone Judges and everyone Assumes.  It's called being a human.  Assuming and Judging happens quite a bit with people who do not communicate well.  When you cannot communicate with someone, you start to assume what they mean.  Early on in mine & Ed's relationship, I encouraged him to work on improving communication with some important players in his life - he didn't want to...  I couldn't change that.  His attitude was always the same on this subject, up until he died as a matter of fact.

This isn't new to my life or our situation (as in, Ed's and mine).  I see it everywhere, all the time.  For us, it started immediately in our relationship, with people who could have made things really easy for everyone involved, actually according to Ed, it started way before that.  I didn't have a clue that I was  being "judged" by folks I had only said "hi" to in the past.  I didn't realize I was so offensive to people when I was out in public - you know, all that smiling, being nice to people, showing respect, having fun, laughing & that damn saying "hi" thing- My God - How Awful (insert sarcasm here).  As opposed to, well, being the exact opposite.  My goodness, I'm almost a monster.

I guess the irony of it is, in the spring of 2006, I was as optimistic as anyone could have imagined about a future with an extended family (which is not like me at all) but once I found out that my reputation had been trashed and that no amount of my being nice/or telling the truth was going to change the situation {because, shockingly, I HAD BEEN JUDGED}, what did I do - I judged back.  Do I regret it - not for a single minute.  That's called self preservation.  As time progressed and some of this persons very negative actions entered my home (i.e., police report was made) affecting my daughter and the man I loved - I no longer cared about protecting feelings or being open to this new person/people (no minors involved in this statement).  This was Not at all the way I envisioned things going for us...  I pictured "Adult Land" with open and honest communication and compromises - um, NO.  I became immediately inflexible about these folks and I become even more so as Ed became sicker.  If these people hurt his feelings, broke his heart or mad him mad, I became irate - I mean, how dare you treat a dying man this way, right?!  After Ed died - I was going to honor his wishes come hell or high water, and I tried my best, and it pissed people off, and I didn't particularly care.  Do I care now - just a bit, but not much really.  I mean, come on people, he was DYING.  The petty crap you were worried about (I don't know, a refrigerator comes to mind) angered me in a way that I cannot describe.  Like a cartoon person with steam coming out of their ears - like that.  I mean MAD. Mad beyond belief.  And so, I'm not mad anymore, but people are mad at me - I just don't care now, and it feels kinda great.  Ed used to talk so much about "letting go", and now I understand what he meant.  He was wise.

Judgmental:  Of / Or denoting an attitude in which judgment about other people's conduct are made;

If  YOUR CONDUCT SUCKS,  I'll have an opinion - you can call it "judging" - I call it, calling you on your bullshit.  And, visa-versa - when you don't like my behavior, you can do the same, and you have!  Just something that has been on my mind lately. 

You know what's terrible, I have a grudge against 2 individuals on this planet - funny thing is - I don't know either of them personally - Pathetic really.  The difference between now & 5 months ago - I don't care anymore.  When Ed was alive, I always felt like I needed to prove that I wasn't "the bad guy", "the monster", "the home wrecker"...  It wasn't me - it was something entirely different that I had absolutely nothing to do with.  But, I guess sometimes it's easier to just blame an outsider, a stranger, than to be accountable for your own actions.  Whateve's, I'll be the bad guy now - if that helps people sleep at night - no problem. 

Oh, and when you make "accusations" about a dead man - who isn't available to defend himself - really?!  That's Low, and I will judge you on that.

Ed was a great Fiance' and a Great Father and a Great Step Father and a Great Friend and a Great Employee and a Great Member of My Family - Those are Facts.  That's all that really matters anymore.

I'm done venting for now - and you can be the judge of that.

Peace - May you not be Judged for things you had nothing to do with!

Thursday, January 12, 2012

Letter To The Editor

Click on the Title Above "Letter To The Editor" and read what January is all about for Pancreatic Cancer.

Thank You Sun News for taking the Letter To The Editor serious and publishing it in this weeks edition!

For You Edward - I will never stop fighting the monster who stole you from our lives entirely too soon.

I had yet another dream about you last night - that makes about 6 times in the last two weeks.  I have no idea as to why, all of the sudden, you have come into my nights, but I wake up feeling very blessed that you have.  Maybe you waited until I was feeling like myself again and you knew that this would only make me happy and not sad now.

Please join our fight - -or- - you won't regret getting involved with some of the most incredible people I have had the honor to get to know.

All cancers need to be fought hard - we just need to get Pancreatic Cancer in the same ballpark as some of the others.

With Love - and finally finding much needed Peace,

Wednesday, January 4, 2012