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, 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

9 comments:

  1. Ed, my mom died of cancer in November but we thought she had pancreatic cancer so I had done a ton of research on it (she ended up having gastric cancer). I don't know if it will help but there is a Doctor at Columbia University in NYC that has dedicated his life to pancreatic cancer and has amazing treatments plus I found a Doctor out of the NIH that is experimenting with vitamin C therapy for metastatic pancreatic cancer.

    I'm not trying to give you false hope but I thought I'd reach out to you. If you'd like, I can share what I learned.

    God Bless you and your family

    Jeff
    jbilet@neo.rr.com

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  2. The law provides for Social Security payments to ex spouses based on years of marriage. Ed doesn't get to decide because the benefit doesn't belong to just him.

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  3. Have fun at the Super Bowl, and welcome to Texas!

    I'm pulling for you. My mother died of pancreatic cancer in September.

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  4. Ed, I am pulling for you and I admire your courage. Have fun at the game and we'll see you for kickoff at Cleveland Brown Stadium in September...

    PS..I know you have to take the high road..but how bad do you want to wear a Pittsburgh Sucks shirt to the Superbowl? Go Ed and Go Browns!

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  5. God Bless you both. Have a fantastic time at the Super Bowl. I also would like to tell you how inspiring you both are. Your courage and strength is unbeleivable. I am truely honored to know you both.

    Lots of love

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  6. Mary Kay ---- just read in Plain Dealer this am about the Super Bowl trip ----- how wonderful for you both------ enjoy yourselves and "drink" in the whole experience --- my prayers are with you -- :):):)

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  7. Hi Ed and Mary Kaye,,,I tried to contact you thru ch. 8 but never got a response from them,,,now saw your article in the pd...my husband is a 22-month survivor of stage IV metastatic pancreatic cancer. He looks and feels great,,he is using the 3rd line treatment due the ineffectiveness of gemzar and serious bleeding complications from oxaliplatin and 5FU. Ken is taking the oral for of 5FU called xeloda...he has had amazing success...the cancer is stable and very little side effects. He and I are so lucky we really feel like we got a miracle. Not sure if xeloda would be for you but I would sure investigate the possibility. would love to talk to you if you want to email me at mlmrd@sbcglobal.net. We live in Highland Hts.,,,good luck we are praying for you...have a wonderful time at the superbowl. Mary Lou and Ken McManus

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  8. Thanks for the comments - all the positive energy is appreciated! As for SS - ever once in a while, you should get to decide what you want to do with your money - I know it's not all "his", but if he wants to specify how it's handled, i.e. trust funds for his kids for college, he should be able to. Otherwise, there is no guarantee it will be there for them when they really need it. Just sayin', it's not right.

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