Chardon Ohio You Are In My Prayers

Dear Chardon Ohio and the Families Suffering From This Tragic Event,

You are all in my thoughts and prayers.  As the mother of a teenage daughter, I cannot even begin to imagine what you are going through.  I am sad that your future will now be filled with more grief than you will be able to seem to bear.  You will bear it, because it is what we do.  This is just so incredibly senseless.  My daughter is in a private learning facility now, partly because of bullying issues partly because of her learning disability - school size was to big to manage by faculty & staff and she was so incredibly sad....  She is so well adjusted now and pretty much loving her new program.  Bullying is an epidemic, not unlike the cancer that stole my beloved.  There was no way in hell I was going to watch my only child continue to decline because of her daily environment, it was more than I could handle during my grieving over Ed.  I am NOT saying that bullying was an issue in the Chardon situation, it just keeps coming up.  It sounds more to me like the young man doing the shooting had severe issues and no one headed the warning signs.  I am a single Mom, but I pay close attention to my daughters attitudes and try and help her the best I can.  Too bad this young man didn't have the guidance he needed.  Grandparent's are awesome, but they are older and less wise to the ways of the world in this modern-tech filled century, in my opinion (again, my opinion).  My chest just aches.

RIP you three young men taken entirely too soon.  And a speedy recovery, both physically and mentally, to the two students still recovering.

And to all the families involved... find prayer, find support and love your family. 

Peace MK

Please Join Our Team

REGISTRATION OPEN FOR PURPLESTRIDE 2012, CLEVELAND!

HERE IS THE LINK TO REGISTER FOR PurpleStride2012 ON 6/16/2012 AT THE CLEVELAND METROPARKS ZOO:

http://bit.ly/PSCLE12

We Are Once Again "Ed's All Star Dream Team"

Let's Make Him Proud and Fight This Monster Of A Disease!

 

 

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6 Months Now

So, the six month mark came and went on Friday 2/17/12...  The sting of missing Ed is still incredibly strong.  Valentines day brought back an awesome memory from VD 2011.  Last year Ed was in Brooklyn for VD week, no big deal, we didn't really celebrate that day.  But in 2011, I guess he felt like he needed to make a fairly grand gesture - maybe because we knew it would be his last - or just because he WAS Ed and had the incredible gift of making me feel special for no reason at all.  Man I miss him.  So anyway,  I was just coming downstairs to leave for work and I hear my house door open, I was like - Hmmm?!  Who is coming in my house at 8 a.m.?!  It was my darling man...  Although he was on disability by this time and had NO reason to get up early - he did.  He went to Malley's (you have to be from the CLE to understand this) and picked me up fresh chocolate covered strawberries and chocolate bacon bark with an awesome card of course.  I mean, come on man, how sweet is that.  Here is a guy on disability, with terminal cancer, in so much pain it cannot be described, but he gets up early, fights the VD crowd at Malley's, drives the 20 minutes to my house - all before I leave for work - so I could have a special day...  the level of Ed's UNselfishness is still astonishing to me.  I will never know another human who is/was so selfless as he was.  He truly did NOT have a selfish bone in his body - it was why it was so easy for people to take advantage of him - and they did.  It took him a long time to really identify who his true friend were and who would not take advantage of his great nature.  Again, it goes to why we didn't get married - he would have done it for me - but there was NO way in hell I was going to take advantage of that sweet nature and put all that pressure and stress on our already rough road.  Would I have loved to have married him - HELL YES...  But, as I stated before - it wasn't the most important thing.  Ed had already given me the most important piece of paper of his life - I was his Health Care Power of Attorney - He trusted me to make the decisions for his end of life - that is a great honor and shows trust on a level that some people will never know.  He knew I would absolutely honor his wishes - to let him die the way HE wanted - no feeding tubes, no vent, no prolonged suffering.  Does every part of your being want to do that stuff when you love someone to keep them alive, again, HELL YES...   Would I ever NOT honor his wishes - Not In This Or Any Other Lifetime.  He was DNR CC only, no heroic measures were to be taken to save his life at the end, it would have only prolonged his suffering - he fought hard - he was tired - it was time for him to go home.

I miss Ed so deeply and profoundly that words cannot describe it.  I loved him so deeply and profoundly, that words cannot describe it.  So for all you lovers out there - it's not about Valentines Day - it's about EVERY DAY.  And if you are not with your absolute Best Friend on your journey through life - don't waste anymore time - make a change.

Also - If you read this blog - you know that The Cleveland Pancreatic Cancer Action Network is gearing up for PurpleStride 2012 - Won't you Please Please consider joining Ed's All Star Dream Team or at least make a small donation to our team.  When it comes to Pancreatic Cancer - every SINGLE penny counts!  I'm not asking for big dollars, just a few would be greatly appreciated.  People being diagnosed with Pancreatic Cancer need to know that it is not automatically a death sentence and that HOPE is in their future.

Copy & Paste this link to register or donate:
http://www.kintera.org/faf/home/default.asp?ievent=1013361

or go to pancan.org and click on the "get involved" tab; go to "events & fundraising" look up the PurpleStride Signature Events - and find an upcoming PS in your community!  It's Easy - It's Important - It Could Save A Life!  We do not have the deep pockets like some other programs nor does the Gov't fund PC like some other cancers - we are grass roots - we need YOU!

Peace!  MK

REGISTRATION OPEN FOR PURPLESTRIDE 2012, CLEVELAND!

HERE IS THE LINK TO REGISTER FOR PurpleStride2012 ON 6/16/2012 AT THE CLEVELAND METROPARKS ZOO:

http://bit.ly/PSCLE12

We Are Once Again "Ed's All Star Dream Team"

Let's Make Him Proud and Fight This Monster Of A Disease!

PURPLESTRIDE 2012 - MARK YOUR CALENDAR NOW!!!

 

SATURDAY - JUNE 16, 2012

BE AT THE ZOO AND LET'S ALL CELEBRATE MY SWEET EDWARD JAMES... IT'S IMPORTANT AND YOU CAN HELP MAKE A DIFFERENCE!

THE CLEVELAND AFFILIATE OF THE PANCREATIC CANCER ACTION NETWORK ANNOUNCES PURPLESTRIDE CLEVELAND,

SATURDAY, JUNE 16^TH

AT THE CLEVELAND METROPARK ZOO

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 PranUpshaw and Clevelands own Casey Coleman to name just a few.

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

To:  ED DEMYAN;
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
To: ED DEMYAN
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 :)

 

 

From: "ED DEMYAN" wrote: 

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

Hideki Kinoshita Runs for Pancreatic Cancer and 9/11 Victims

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

Kimberly Bogin

Running Examiner

• Editor’s note: This article is a Top 25 finalist for America Inspired. The contest celebrates extraordinary people making a difference across the United States. We invite you to cast your vote for the most compelling article in the Passion category as well as the four other America Inspired categories. After voting closes on Jan. 27, the finalists with the most votes in each category will share $100,000 in prizes.

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.

PURPLESTRIDE 2012 - MARK YOUR CALENDAR NOW!!!

I WANT EVERYONE TO MARK THEIR CALENDARS NOW!!!!

SATURDAY - JUNE 16, 2012

BE AT THE ZOO AND LET'S ALL CELEBRATE MY SWEET EDWARD JAMES...   IT'S IMPORTANT AND YOU CAN HELP MAKE A DIFFERENCE!

THE CLEVELAND AFFILIATE OF THE PANCREATIC CANCER ACTION NETWORK ANNOUNCES PURPLESTRIDE CLEVELAND,

SATURDAY, JUNE 16^TH

AT THE CLEVELAND METROPARK ZOO

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.

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

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!
MK

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 - pancan.org -or- knowitfightitendit.org - 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,
MK

LAWRENCE A. Larry SZUHAY Obituary: View LAWRENCE SZUHAY's Obituary by The Plain Dealer

LAWRENCE A. Larry SZUHAY Obituary: View LAWRENCE SZUHAY's Obituary by The Plain Dealer

My dear friend Connie - how my heart breaks for you and your girls.

I am here if you need me.

Happy New Year



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.   

PC needs to be stopped

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

http://merimeejourney.blogspot.com/

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.

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. 

mk

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

12.6.11

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 - knowitfightitendit.org... Join our fight, won't you!

So, Thanksgiving

So, like I stated above, I hate to admit it and I hate to sound so bitter - but I really wasn't feeling very "thankful" this Thanksgiving.  Although being with the closest people to me for 4 days in the ATL was a great break from reality!  And, anytime I can have cocktails at El Azteca in the ATL, it's all good.  I have some very fond memories of Ed there!

My teenager has decided that it is everyone else's fault but her own that she needs to leave her high-school...  Hmmmm, no one else made the bad choices for you - you are the only one that has the power to change what you do?!  Man, wake up already and take some responsibility for yourself.  It has just made an incredibly difficult time almost completely unbearable.  The drama and ugliness she brings home is unreal.  Hopefully this change will help her grow up and see that she needs to get it together or her future will be pretty pathetic and she will wind up in a job that she hates just to pay the bills (I speak from experience).  Help yourself while you're young and you can make changes.

Other than that - I just try to get through each day without having a mental break down.  And now, bring on the rest of the Holidays....  Not in the least excited about any of it.

When the one person in your life that made everything bearable is gone, nothing really seems to matter anymore.  He truly filled me with joy and made me laugh every single day we were together.  Laughing is not something I do very often anymore - I just "am" now.  If anyone would have told me that I could be this incredibly sad, I would not have believed it for a minute.  But sad I am, all the time.
And for these reasons - I tend not to update the blog very much.  Who wants to read this depressing stuff, no one really, and I get that.

There is no more "we", just an "I" and that sucks, plain and simple. 

So - if you are lucky enough to be a "we" with that exact right person, do not - I repeat - Do Not take it for granted, it could be gone before you know it.  And, if you are in a miserable situation - change it!  Don't try to be honorable, be Happy!  Ed had regrets, big ones, we discussed this a lot in the end - he would tell you all - Be Happy even it means not "doing the right thing" because that will just get you screwed in the end.

So - Be Happy everyone and make changes in 2012.  I know I'm going to try 'cause it's all there is left to do.

Festive Friday Q104

Shout out to the entire gang at Q104 for letting me and Megan, our event coordinator for the Pancreatic Cancer Action Network, Cleveland Affiliate, join the show this morning.  Everyone down at Q104 could not have been nicer and it was a very COOL experience!

It is one of those experiences that is nothing like what you expect...  You sit in a very small room and there are only a few people in the Festive Friday audience - I always thought that it was a room with about 25 people in the audience, it's more like 8 - who knew?!  We got treated to Angelo's Pizza from Lakewood - just incredible.  They actually have a mashed potato pizza, crazy good stuff!  One of the Q104 staff members shared with us that her 80 year old Grandma was just married after beating Pancreatic Cancer - it was a very uplifting story and just goes to show ya, you are never too old to find true love!  Red Beard Ben is adorable, Megan wanted to take him home in her pocket.  Allan Fee and Katherine Boyd are great hosts and make you feel right at home.  Thank You Q104!  Cleveland Rocks.

Megan did an outstanding job promoting PurpleLight for this coming Sunday (11.20.11); praying the rain will not put a "damper" on our event.

Edward James, you remain in my heart and mind every second of every day - I miss you always. 
I cannot believe we are less than one week away from Thanksgiving, your favorite holiday of all!  We will celebrate your life and your passion to live up until the very end my love.  You are my inspiration to do good things.

Wishing all of you a healthy and happy Holiday Season... hard to believe it's upon us once again.

Peace - MK 

Thank You Cleveland Plain Dealer

http://blog.cleveland.com/metro/2011/11/ed_demyan_the_terminally_ill_b.html

I hope you all enjoy this follow-up article in today's Clevleand Plain Dealer.  Ed would be proud that light continues to be shed on this disease that needs so much attention.

Please join us for PurpleLight this coming Sunday, 11.20.2011 to honor the survivors, those who continue to battle and those we have lost.

PurpleLight.Org - register today and let's turn the country purple on Sunday!

11.11.2010 Email - Funny

From: Mackulin, Mary Kaye   Sent: Thursday, November 11, 2010 10:23 AM
To: Ed Demyan
Subject: Good Morning

Good Morning... How are you feeling today? ILY... xoxo me

-----Original Message-----
From: Ed Demyan   Sent: Thursday, November 11, 2010 10:55 AM
To: Mackulin, Mary Kaye
Subject: RE: Good Morning

Feeling OK. I got this cancer thing going on and its a little bothersome. ;p

From: Mackulin, Mary Kaye   Sent: Thursday, November 11, 2010 10:58 AM
To: Ed Demyan
Subject: RE: Good Morning

Aren't you just the comedian this morning... xo

-----Original Message-----
From: Ed Demyan  Sent: Thursday, November 11, 2010 11:05 AM
To: Mackulin, Mary Kaye
Subject: RE: Good Morning

That's me!!! XOXOXOXOXOXO

You are my soul Mr. EJD and I will love you my entire life.  This Month Is For You my sweet, sweet man.  I hope you are happy where ever you are!  Rob burned the new Alice CD for me - the first song is us, entirely.  I am so bitter and angry these days and I hope it ends soon - I absolutely hate wasting any energy on negative feelings, but it is just so intense right now.  I have not felt this angry in such a long time, and now I feel it every single day.  I know this would make you unhappy with me, and I promise you I will try and get over it - I'm a walking open wound right now and I just can't seem to get passed it as quickly as I'd like.  For you I will try.  ILYSM and MYSM....  me xoxoxo

---

Purple Light 11.20.11

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 www.purplelight.org

• 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 www.tempurpedic.com
• 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 www.zgallerie.com.

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:

www.knowitfightitendit.org.

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.

Contact:

Mary Kaye Mackulin

Media Rep – Cleveland Affiliate
Pancreatic Cancer Action Network
e-mail: mmackulin@pancanvolunteer.org