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





Showing posts with label Super Bowl 45 Here We Come. Show all posts
Showing posts with label Super Bowl 45 Here We Come. Show all posts

Thursday, January 27, 2011

One Week And Counting

Well, here we are exactly one week away from a once-in-a-life-time-trip.... A Super Bowl... Never, ever, in a gazillion years could I imagine having to deal with a year like we have just experienced. Talk about your low-lows and your high-highs. I'm a little bit nauseated by it all, but still smile everyday knowing that Ed made my life complete. Whatever will I do without him. I cannot even being to imagine. But, I'll figure it out, I always do.

I'll tell what is truly bothersome, our gov't is so f-d up it's not even funny. Why is it that they get to determine what happens to your Social Security benefits when you die... Shouldn't you be able to determine how and where and how much money you want to go to whom, I mean, it's YOUR money, YOU worked YOUR whole life for it. It makes me angry that he cannot decide. Shouldn't it be HIS decision on this. Talk about the land of the free - Um, how is that, when you are not FREE to decide how you want your final financial wishes handled. I'm a bit disturbed by it all to tell ya the truth. It is what it is...... But it is wrong. And just to be clear, I don't want his money, I don't need it.... It should just be HIS decision!

Anyway - I have new tennis-shoes (to all my New England friends, that'd be sneakers), a new Browns hoodie, and nice new NFC Championship Green Bay T for our trip. Still need a new pair of dressy jeans and a blingy type shirt for the Jim McMahon Super Bowl bash on Sat. night - VIP tickets baby, VIP. We already have lunch and dinner plans for Friday - going to the JFK memorial/museum in Dallas also on Frid. afternoon.... Then dinner with Johnny Gremm's little sister, Krissy - I have never met her so I am really looking forward to having dinner with her and her family on Friday. Rest on Sat. afternoon, Jim McMahon party/country music concert on Sat. night - and then.......... SUPER BOWL 45....... Too exciting for words I must say. We are so looking forward to meeting Richard, he is a Dream Foundation Board Member and lives in Dallas. He and his wife will be taking us to lunch on Friday and then Richard will be attending the SB with us... How Cool Is That! Shout out to Dana, works for the Cleveland Browns & Johnny Gremm's cousin, she sent us 3 Cleveland Brown Lanyards for our SB Tickets so we can wear them around our necks and not loose them! Hooray.

I continue to be astonished by peoples generosity, the people all noted above, and the strangers who reach out to us - truly amazing. A friend of my parents called me out of the blue on Tuesday night after he saw our Fox 8 News story... He owns a limo company, offered to take Ed and I to the airport & pick us up, free of charge... Are you even kidding me, that just doesn't happen. I respectfully declined but was so touched by his generosity. My Mom is taking us to and picking us up from the CLE.... Hmmmm, after house sitting & Paige duty, maybe I should take the limo and cut my Mom a break?! I may reconsider that.

Ed should be getting a visit on Monday from a volunteer named Kelly who represents the Dream Foundation - she will have all of our documents, Dream Foundation T's, a disposable camera and some other goodies for our trip... Then I will know it's real. Ed rented our car for the weekend, you gotta love a man, he calls me and say's, and I quote, "Should I get the GPS"......... Hmmmmmmm, really. Um, neither one of us are even remotely familiar with Dallas, I'm thinking that was a no-brainer... You gotta love men. I guess getting a GPS is kinda like asking for directions, so since it was ME (the female) that said we should get the GPS, his man-card is all safe & sound.

O.K. Peeps, I'm out for now........ Ed had CT scans done this morning, have no idea when results will be back... As always, will keep you posted. We continue to work with Rational Therapeutics in Los Angeles regarding possible Tumor Cell Profiling... God willing that will happen. However, it seems that getting a viable piece of his tumor for testing may not be a possibility, time will tell.

Almost forgot...... Today is our un-official "5 year day".... 5 Years Ago today, Ed knocked on my door for our first reunion planning meeting for our 25th BHS Class Reunion... Thanks Ed for coming over, thanks for telling me I had great skin, thanks for becoming such an important part of my life.... ILYSM EJD. xo

Peace & Love....... MK & Ed