Always Fighting for the Love of My Life

Edward J. Demyan; Pancreatic Cancer Victim; Supported and written by MaryKaye Mackulin, who loved him.
RIP my sweet man ... 1963 - 2011

Friday, October 28, 2011

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

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

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

About the Pancreatic Cancer Action Network

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

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

Tuesday, October 25, 2011

4s Is 4 Steve - Check This Out!!!

Following the passion of Steve Jobs to change the world, we hope to do our small part to better the lives of others, in memory of an innovator.
As the world pays tribute to the late Steve Jobs in many different ways, two men with a special link to Apple have gone above and beyond in remembering Jobs, and are taking steps to raise money for local and national charities while paying tribute to one of the world’s greatest innovators.

Their goal is to print and sell ’4S is 4Steve’ t-shirts featuring an inspiring quote from Steve Jobs, where ...100% of the profits will go to deserving causes: for research, patient support, community outreach and advocacy for a cure of pancreatic cancer by donating profits to the Pancreatic Cancer Action Network and to raise funds to purchase and donate Apple iPads for the Golisano Children’s Museum of Naples, in hopes to encourage exploration and discovery through innovative technology for the children of SW Florida.

Friday, October 21, 2011

Sat. 10-1-11 on Put-In-Bay

So, Barbie, Janet and I wake up on a windy Saturday morning on Put-In-Bay, at least it wasn't raining!  We sat in bed and talked for probably three hours before we actually got out of bed & got going - it was like being teenagers.  We laughed so much about the things we've been through and what we are all currently going through.

Our mission for the day - get Ed's ashes (very small amounts mind you) sprinkled in places that he would love!  We did that two times on our walk downtown - great spots!   

We headed out for "brunch" at Mossbacks - Ed's favorite restaurant on the Bay.  I made the girls taste the Cajun spiced Walleye Nuggets that he loved so much - they were awesome, as always.  We couldn't get the booth that Ed proposed in, but we got the one right behind it, close enough.  After lunch we headed over to The Round House (TRH) - again, Ed's fave on the island.  We started our cocktails off at right about 12 Noon with Rum & Coke to honor that wonderful man.  Believe me, one R&C was plenty - as all three of us gal's are beer drinkers!  Thank goodness that TRH has a small outside bar that serves 16 oz. Lite's in the aluminum bottles - we knew that if we were in it for the long haul that day - draft beer was not an option so early in the afternoon.  The outside bartenders name - "Eddie" (I do have a picture of his little information board he had set up - too funny);  So Eddie's little board noted that his favorite saying was "Living The Dream", I just about pee'd myself - If you would ever ask Ed how he was doing, he would always say "Just LTD - Living The Dream".  I was so tickled!  I will try and get that picture up of bartender Eddie's dry erase board, it was so my Ed.

So, after TRH, I think we headed back to the hotel room to throw back a few free beers, do a shot of Jaeger and plan a little afternoon fun at the official Fall Ball location.  As we sat in the room, we continued just talking up a storm, at this point we were laughing, crying, laughing, crying - you get the picture.  We get a cab and head over to Fall Ball.... (but not until Janet gives us each our glow rings & glow gloves for the evening hours of our adventure)  We arrive at Fall Ball and we realize that Barbie is sneaking some bottle beer into this event, we are cracking up, because this event is free for us and you can have all the beer you want (draft yes, but free none the less).  I think we are the only morons to ever sneak beer into an event where you get free beer!   There was live music and just the best general overall vibe of "fun on the Bay".  This was very much like the vibe you would get at Lonz's back in the day (oh, how I miss that place).  Everyone was talking to everyone and just having a blast.   I mean, where else do you just randomly take jello shots from complete strangers - no where, but on PIB, the same rules never apply!  Near the end of the event, Barbie decides to show us some of her stripper-pole moves - on a pole holding up one of the big tents - Not a good idea;  Janet and I tried to talk her out of it - but no, she starts to spin around the pole and one of the volunteers comes running at her, and yelling... NNNNooooooo....  Janet and I just kind of walked away shaking our heads & laughing our asses off - again!  Only Barbie people, only Barbie.  And, that is why I love her.

So, we head back into town and I believe we hit TRH again (where Barbie traded her glow ring for three beers - gotta love her), then Mr. Ed's (how appropriate) for a little while, the Fish Bowl next, nice & quiet and we had the run of the jukebox... that's a rare thing on the Bay, but with the weather being nasty, the island was still pretty quiet on Sat.  I abandoned the girls for a little while and ran over to the Beer Barrel to see Jennifer & Phil, say Hello and listen to a little more Brother Trouble!!!  Man they rock, I just love those boys...  when they make it BIG, it will be very cool.   So, I start heading back to the FB, and realize I snagged poor Jen's jacket - um, drinking for almost 12 hours makes you do strange & random things, I ran that back to her.   Now, I can head back to the Fish Bowl, after a quick stop in the park to finish my sprinkling of ashes, it was pitch black & a little windy, so off he went - forever in the park & forever in the lake he loved!   Janet calls my cell and was like, where are you - I said - look right in front of you and I waved my glow ring at her and we were all hooked up again.

After that, it was around 11:30 p.m., so we headed over to Cameo Pizza to finish our marathon day of partying - and it was a GREAT day.  I was sitting with Janet chit-chatting, while for some strange reason, Barbie was on the other side of the waiting area, and my phone rings?!  I'm like, who the hell is calling me at 11:30 p.m. on a Sat. night - checked the screen, my ex - WTF?!  At least he hung up after one ring & I didn't have to answer it or listen to a voice mail.  I mean, I am o.k. with this guy, but really, I don't need to talk to you that often, it's all good - leave the past in the past man.  I put my phone away and go to grab my pizza to finish it, and it's gone?!  I'm like, what happened to the rest of my pizza - well, turns out, when Barbie is hammered, she is a food stealer, she walked over to Janet & myself and while I was preoccupied, she ate my 'zza - again, only Barbie!

We walked back to our room - and hit the hay!  Both extremely tired & more than a little loaded.  By far, on of my best days ever to honor that man I love so much.

Hangover Sunday - oh my yes!  Not a nightmare hangover, just a mini one thank goodness cause lord knows we had to get back on the Jet and get home to reality.  So, good-bye PIB until next year.  Seeing that Fall Ball was such a blast, one never knows, I may have to see about coming over in April and do the Spring Fling.  I just Love Put-In-Bay.   Ed just Loved Put-In-Bay.  It will always have him now.

Till next time - Peace.

Monday, October 17, 2011

Two Months Today

Hard to believe it's been two months since we lost our beloved Edward.  I am in more pain now than I was those first few weeks.  I suppose like so many things in this life, it gets worse before it gets better.

October has brought many highlights, however.

There was the incredible, but frightening, trip over to Put-In-Bay with Janet & Barb. 

 - This was the ferry ride from hell on the Jet Express;  I guess it was a good thing we caught that 7:15 p.m. on Frid. 9/30, because they cancelled the rest of the trips that night.  Barb was hanging on to Janet's left knee and I had the right sleeve of her jacket in a death grip!  We were literally coming out of our seats about 8-10 inches with each wave.  The sound of the waves hitting the ferry was also extremely frightening. 

 - So we get to PIB and we are standing in the parking lot of the Jet waiting for a taxi and Barbie cracks open a cold one - I was like, you know, we are still in OHIO - open containers on the street are not legal.  Um, we didn't really care.  That ferry ride had me in tears and several people around us getting sick.  The crew was throwing red bags out to passengers left and right that were loosing their lovely dinners which were probably just consumed prior to boarding the boat!  What a waste of good lake perch.  I have not cried because I was "scared" in forever - for other reasons, yes, but this was truly worse than any plane turbulence I have ever experienced.   So the three of us split a quick brew waiting for our taxi in what seemed like hurricane weather - except it was cold, not warm!

 - Needless to say, once we hit the hotel room - we cracked a few more cold ones, shots of Jaeger all around and then Janet looks on the floor, and low & behold, a penny...  The first penny from heaven of the weekend.  The next came just a few minutes later when Janet sat on the bed, and there was another penny right in the middle of the bed - she was very excited...  Convinced that Ed was with us!

 - We headed out downtown to the Beer Barrel to see the band Brother Trouble.  Which was the main reason we picked this weekend to do PIB in the first place.  Ed and I saw Brother Trouble two other times in 2011; once at Jim McMahon's Super Bowl party in February and again at Tangiers in Akron in June for the Lopen Charity event to raise money for Akron's Children's Hospital.  So, I figured, three times would be the charm.  It was fairly dead for the Beer Barrel, but the weather was so terrible that we were just happy to be inside - warm, dry & safe!  We had on our glow gloves and we had more beer and great entertainment!  I was happy.

Will Bring you Saturday 10/1 events tomorrow.....

Don't forget - November is Pancreatic Cancer Awareness Month....  Bring on the Purple People!   or


Wednesday, October 12, 2011

November is OUR Month!

Hello all,

November is fast approaching and that means it's almost Pancreatic Cancer Awareness Month! There are lots of important and exciting things happening that you can be a part of including fundraising events, our Affiliate Meeting, and our newest event PurpleLight! Also, if you haven't checked out the new campaign for November, please visit to Be a Hero this November.  Here's all the details you'll need to get involved right here in the Cleveland Area!

Cleveland Affiliate Meeting

Wednesday November 9th 6:30pm

Independence Family Health Center 

Conference Room "A"

5001 Rockside Road, Crown Centre II 

Independence, OH 44131

Purple Possibilities-A Pancreatic Cancer Awareness Fundraiser

Thursday November 10th 7:00pm-10:00pm 

The Map Room

1281 W. 9th St.

Cleveland, OH

Pre sale tickets are $10, $15 at the door and $5 for survivors. Music, Food, signature Purple Possibility cocktails, silent auction, and 50/50 raffle.
For more information and tickets please contact Stefanie Merkosky at (440)231-0601 or

PurpleLight National Vigil For Hope

Sunday November 20th 5:00pm

Cuyahoga Community College—East Campus

4250 Richmond Road
Highland Hills, OH 44122

Cleveland will be one of over 45 communities across the country to host PurpleLight Vigil for Hope event. PurpleLight Vigil for Hope is a time when thousands of people across the country will have the chance to come together to honor loved ones fighting pancreatic cancer and for those who have lost the fight. Participants are encouraged to wear as much purple as possible. The event is free, but please register at to make sure we have the name of the person or persons you are there in honor or memory of. 

You are all Hero's in the fight against this deadly disease and I look forward to seeing you all in November!

Go Purple!

Sunday, October 9, 2011

4.28.2006 E-mail

Last night I read all the e-mails Ed had printed out & saved.  This one is entirely too funny, because it is as Cheezy as it gets.  We were like two teenagers when we started dating and our hearts were just filled with incredible hope and joy in the beginning.  I hope this makes you laugh.  By the way, "CTSF" stood for Carpal Tunnel Suck Fish - long story, but too sweet that he was as goofy as I am and loved the stupid initial game we played.

From: Ed Demyan
Sent: Friday, April 28, 2006 @ 12:06 pm

My Crab, I hope your day has gotten better and if it hasn't maybe this will help you.  I wanted to tell you my feelings in verse.  Tell me what you think.  Your CTSF :) xoxoxo

"Like a ray of sun that shines on morning dew,
You came into my life from out of the blue.
I did not look and could not see,
What was right in front of me.
I used to see you from afar,
Not really knowing who you are.
But something happened from the start,
On that night of Friday when you stole my heart."

Thank you my love...  Every word is so precious and sacred to me.  I am so incredibly sad right now that even the smallest things from you mean so much. 

It seems I keep hearing one song over and over on the radio, I know it doesn't really mean anything, but when I hear the lyrics reminding me not to fear the reaper, I know now that I don't.  When my time comes, I will not be afraid because I know it is you that I will be joining.  However, I am also afraid that, because I do not pray anymore, I might not be able to be with you.  It is an internal struggle like I have never had before.  I know people in your past probably prayed that I would be out of their lives and yours, and those prayers were answered, just not in the way that was wanted.  So, I am afraid to pray, because if you don't pray for the exact right thing, it may turn out horrifically bad.  It's the old "be careful what you wish for, because you just might get it" scenario.  So, if God has everything already pre-determined, why pray, it won't change anything from what I understand.  So, do I still believe He is - I do, but do I believe it will make a difference if I pray, I don't.  It is in His hands and it comes down to my Mom's favorite saying of all, "It is what it is".

Paige's Birthday party is Friday, you always loved getting ready for her BD and the party, and this is going to be a difficult one to say the least.  Our hearts are broken and she missed you so much yesterday after her soccer game.  She had a bad game and all she said when it was over was, "I just want Ed here".  You had a great way of  putting things into perspective for her and she misses that so much.  She sleeps with one of your t-shirts every night.  Oh, and, the feeling is mutual, I just want Ed here.

Peace my love. 

Monday, October 3, 2011

10.3.11 Following PIB

As I was driving to work this morning, I realized I finally had my first real dream about Ed since he died. I couldn't decide if I had the dream because I was worried about this past weekend, and if he would truly be happy about being on PIB for all eternity (not all of him, just a little)...  Janet and Barb were convinced that it was absolutely the right thing. There were several "penny's from heaven" involved, a bartender named "Eddie" who's favorite saying was "Living The Dream", which most of his friends know was one of Ed's favorite sayings, etc - more on that in my blog later...  So, driving to work this morning, still wondering if it was right - the following song comes on 107.3,  Ed sang this song to me when we danced at my cousin's wedding last October and was one of his favorite songs and one of my favorite memories of him.  I have only heard it on the radio one other time, with Barb ironically.... So, I figure, he is happy.    I will meet you on the other side, Baby.

Just Breathe (Lyrics) Artist: Pearl Jam; Composer: Pearl Jam

Yes I understand that every life must end, aw huh,..
As we sit alone, I know someday we must go, aw huh,..
I’m a lucky man to count on both hands
The ones I love,..
Some folks just have one,
Others they got none, aw huh,..
Stay with me,..
Let’s just breathe.
Practiced are my sins,
Never gonna let me win, aw huh,..
Under everything, just another human being, aw huh,..
Yeah, I don’t wanna hurt, there’s so much in this world
To make me bleed.
Stay with me,..
You’re all I see.
Did I say that I need you?
Did I say that I want you?
Oh, if I didn’t now I’m a fool you see,..
No one knows this more than me.
As I come clean.
I wonder everyday
As I look upon your face, aw huh,..
Everything you gave
And nothing you would take, aw huh,..
Nothing you would take,..
Everything you gave.
Did I say that I need you?
Oh, Did I say that I want you?
Oh, if I didn’t now I’m a fool you see,..
No one knows this more than me.
I come clean.
Nothing you would take,..
Everything you gave.
Hold me till I die,..
Meet you on the other side.

He was the best!  This is why I was at every doctor appointment, chemo treatment, invasive procedure, hospice the first go around for pain management and hospice for 6 days and nights at the end.  This is why I have to let go of some of the negative emotions I have been having.  I know what we had and it doesn't really matter what anyone else thinks or believes, because that is what Ed would have told me. 

You are in some pretty spectacular places now my love - I hope you enjoyed what you witnessed on Friday and Saturday, cause I sure enjoyed taking you on that trip!  Oh, and Barbie & Janet really had fun helping me - thank you sweet friends!  I think we now have a new tradition for PIB - Fall Ball look out, you have some new fans that will be joining you for some time to come, God willing.