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

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.

Website	http://www.4sis4steve.com/

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.

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!

knowitfightitendit.org   or   pancan.org

Peace.

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 knowitfightitendit.org 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 smerkosky@pancanvolunteer.org

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 http://www.pancan.org/purplelight/ 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!

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. 

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

Lyrics:

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. 

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

Fund Raiser in Scottsdale AZ with Jim McMahon

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

http://www.prweb.com/releases/Shpoonkle/SponsorMusicJam/prweb8815364.htm

Broken Heart

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

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

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

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

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

I Love Carrie Bradshaw

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

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

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

Looking back on his FB page

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

4/21/2011:

Ed Demyan

‎5 years ago today I began a relationship with the woman of my dreams. She is the strongest woman I know and I can only hope that I will be able to say "I love you baby" in another 5 years. MK you keep me fighting every day of my life.
Happy 5 year Anniversary,
Your EJD.

· · April 21 at 7:15am · Privacy:Shared with: Ed's friends

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

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

  April 22 at 10:22am · · 2 peopleLoading...·
• 
  

  Judy Roskavich Mackulin Thank you Edward for making my daughters life wonderful - and her making yours wonderful too. Happy 5 yr Anniversary . XOXO
  

  April 22 at 6:47pm ·

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

Ed Demyan

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

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

Ed Demyan

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

· · July 19, 2009 at 9:44pm · Privacy:Shared with: Ed's friends

• You like this.
• • 
    

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

    July 20, 2009 at 10:12am ·
  • 
    

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

    July 20, 2009 at 10:43am ·

Hypocrisy

HYPOCRITICAL

[hip-uh-krit-i-kuhl] Example SentencesOriginLike this word?

hyp·o·crit·i·cal

  /ˌhɪpəˈkrɪtɪkəl/ Show Spelled[hip-uh-krit-i-kuhl] Show IPA

adjective

1.

of the nature of hypocrisy, or pretense of having virtues, beliefs, principles, etc., that one does not actually possess: The parent who has a “do what I say and not what I do” attitude can appear hypocritical to a child.

2.

possessing the characteristics of hypocrisy: Isn't a politician hypocritical for talking about human dignity while voting against reasonable social programs?

Related forms

hyp·o·crit·i·cal·ly, adverb

un·hyp·o·crit·i·cal, adjective

un·hyp·o·crit·i·cal·ly, adverb

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

20 Days Later, who is reading this

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

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

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

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

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

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

Peace - MK