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

Thursday, April 26, 2012

Moving Forward

This blog is a MUST read!  Michelle can sum-up words so beautifully and, I swear, she is sometimes picking my brain.

From a site I enjoy:  Giggle Palooza
"hate is a disease...symptoms are, jealousy, judgments, and resentments...please do not allow yourself to be contaminated...very contagious and spreads quickly!"
I will continue to try and remain positive, move forward...  It's really all anyone can do.  It isn't easy - and it certainly isn't "fair" - but not much in life is.  Oh, the month of May will be upon us shortly and the marathon of staying busy continues.... some days I am so thankful to be busy and some days I just want to stay in bed with the covers over my head.   But for the most part, as summed up nicely by Michelle in her post, I am tremendously glad that Ed is no longer in pain and can fish, play guitar and sit in sunshine all day long.  Tonight, we all know he is watching the Draft... and, as he would say, just LTD - Livin' The Dream. 
As Always - Ed's All Star Dream Team can use some good team-mates - won't you join us or consider making a small donation to this outstanding non-profit...
A friend pointed out a quote to me this week (which was used by someone in a means to shame me) and it made me curious as to who actually wrote the quote...  Turns out it showed up as Author Unknown, but I thought I would expound on it and add the rest of the quote.  Because regardless of which side of the battle you are on - it's a good quote.   And, I don't feel shame, because like the person who posted the quote, I feel that I am right and they are wrong?!  It is a lose-lose for sure.
Standing for what you believe in, regardless of the odds against you, and the pressure that tears at your resistance, ...means courage

Keeping a smile on your face, When inside you feel like dying, for the sake of supporting others,
...means strength

Stopping at nothing, and doing what's in your heart, you know is right, ...means determination

Doing more than is expected, to make anothers life a little more bearable, without uttering a single complaint, ...means compassion

Helping a friend in need, no matter the time or effort, to the best of your ability, ...means loyalty

Giving more than you have, and expecting nothing but nothing in return, ...means selflessness

Holding your head high, and being the best you know you can be when life seems to fall apart at your feet, facing each difficulty with the confidence that time will bring you better tomorrows, and never giving up, ...means confidence.


Monday, April 23, 2012

My Blog - My Opinions

Just to reiterate - this is MY blog - Ed endorsed it and encouraged me to keep it going.   I try not to comment about his life where it did not pertain to Me and My family (a few melt downs & rants about some bad behavior, sure - am I proud, no).  He had another life - he lived two separate lives - I was not part of his "7 days in his home town" - that would be "their" story.  Every other week he lived in another city - lived another life - was a parent & community member in that city...  I missed him on those weeks - but unless we had something special planned - I did not see him on those weeks;  When he was sick, I would see him on those weeks because it was me, or another one of his friends, that took him to treatment.  So, as for the new accusation about me "stealing" his time & taking him away - um, yeah, that's really not accurate.  When accusations are made, I will defend myself and my family.  I recently did take a slight step back and did post something negative, I have removed it and will try and refrain from that moving forward.  The bottom line - we need to fight this monster of a disease so that the next generation can have early detection, improved medication and increased survival rates... 

If You Do Not Like This Blog....   It's Easy....  Do Not Read It.

All Pictures posted here also belong to me - you have your own pictures and opinions, feel free to start your own blog which I will gladly not read.

Friday, April 20, 2012

Happy Anniversary EJD


Happy Anniversary Weekend my sweet EJD... Six years ago we decided, that after 90 days of becoming great friends, we would move our relationship to the next level. The Mad Cactus has never seen so much PDA from two old-farts, I am sure of that... We started something spectacular, there are no words to describe it fully.... So many of us continue your battle, so many of us miss you very deeply, so many of us love you unconditionally... I pray daily that I will join you on the other side and that I find the strength to live life to its fullest until that time comes... Always, me xo

Thursday, April 5, 2012

Opening Day And Shocker Tour '11

Ah, Opening Day for the Cleveland Indians...  

How happy would my sweet Edward James be today...  He had this awesome way of saying that Football was his favorite sport/season, that was, right up until Baseball season rolled around...  he really was equally happy about both.  He followed football much closer but he loved the weather that came with baseball season...  AND, He did love his Tribe! He loved sitting at a game having the sun beat down on him.  He was old school - no sunscreen, he'd say... "gotta get a good base burn going so I can tan better" ...  I would argue with him endlessly about sunscreen when he would go fishing in the morning out at the cottage.  I mean, even when he was terminal last spring/summer and we knew we were close to the end - I would still harp on him about sunscreen - he would just look at me, shake his head, laugh and walk away with his fishing pole & tackle box...  God I miss him... 

How many Tribe games did we see in our almost 6 years together - hmmm, I'd guess a little more than 15 ...  Not enough, that's for sure.  I will probably try and go to a few games this year because I just love the atmosphere at a game...  You bet I'll be at the Sunday, 8.26.2012 game against the NY Yankee's...  It's going to be an EPIC day at Progressive Field...  Stay Tuned for Details on THAT game!  Let's just say, you'll be seeing a "sea" of purple at the ballpark that afternoon!!!  

I think how Ed would have loved the winter of 2012...  Um, because there wasn't one!  I think of how he would have loved watching the Child play rec basketball this past winter and how he would be excited that her spring Soccer season was ready to start.  I think of how he'd be chompin' at the bit to get out to the cottage and get things ready for a summer of fishing and cocktails by the lake he loved so much...  He'd be all pumped up for a couple trips over to Put-In-Bay...  I think too, how much he would have loved to have been on the trip to Chicago I took two weeks ago for Community Outreach Leadership Training (COLT) for The Pancreatic Cancer Action Network ...  It was inspiring; And moving; And educational; And emotional - I think of how he would have loved being with the other Survivors (and Ed would have fit right in with a couple gent's who had me laughing every time I saw them...)   He would have loved it all...  Did I mention, I miss him.

Here's the thing I've been thinking about as we gear up for PurpleStride Cleveland 2012....  When Ed was sick, he made it abundantly clear that The Pancreatic Cancer Action Network, THIS Non-Profit Organization, needed support.  It was his mission to support them until he could not anymore....   Then he made me promise that I would continue his mission when he went away - um, duh - of course!  So, if you are one of the countless people who ever asked Ed, while he was here, "What can I do for You? Please ask"...  I am asking you on behalf of Ed, and all the Pancreatic Cancer victims and patients still fighting, please make a donation to our event - $5, $10 - every single penny will count in finding an early detection tool and a cure for Pancreatic Cancer - !  We Are Ed's All Star Dream Team and we sure could use your support.

Here is my sweet Edward last April - almost exactly one year ago - doing what he loved most (well, almost) - Fishing and being with his friends... who were more than that - they were (and are) his brothers...  To The Boys of Key West and "The Shocker Tour 2011"!  Michael, Rob, Johnny, John, Greg, Greg and Elvis... Your unconditional Love and Support of Edward lives in my heart and you proved that blood doesn't make family - LOVE makes family!

As always,  Peace... MK   Go Tribe!
Michael - the picture above is just for you....  The ones below are for everyone else.

Oh, Sweetie - you can do better...

                                           Oh, Yes, Much better

Ed and his need to take self-portraits - Dear Lord Honey, really??  (Yes, you are ver handsome my love!)

                                                   Hello Monkey! 

Hanging on the balcony...

What is Key West without a trip to Sloppy Joe's...   Sloppy Joe's, Sloppy-Sloppy Joe's!

RIP my Sweet Edward James... Always on my mind, forever in my Heart.  xo