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

Saturday, January 15, 2011

Dallas, TX Here We Come

So, we found out yesterday, Frid. 1/14, that we are going to the Super Bowl courtesy of the Dream Foundation (DF) [] and our fantabulous Cleveland Browns who donated 3 of their aloted SB tickets... 1 ticket for Ed, 1 for me, and 1 for either a DF employee or one of their major contributors. Either way, I say Fantastical! We are truly thrilled - this is such a once in a life-time opportunity for regular schmoe's like us! We will fly out of the CLE on Friday and be returning home on Monday - hopefully we will be able to really enjoy Dallas on Friday evening & all day on Saturday prior to the big game on Sunday. Needless to say, Ed is not a huge fan of Fergi and the Black-Eyed-Peas, but hey, it's the freakin' Super Bowl, I think we can handle having fun at half-time regardless of who is there! I'm so hoping to spot celebrities, maybe run into some CLE Brownies or other NFL players would be way COOL! If Peyton Manning or Peyton Hillis want to meet me, I'll be available, just sayin'! It's strange that two of my favorite players have the same, but so uncommon, name for a guy. Hm.

On another cool note, Ed and I had the pleasure of being interviewed last night by a reporter from The Post, Strongsville edition. Thanks Terry! Again, if we can raise awareness about this disease, then that is what we will continue to do. If anyone wants to talk to us - we are an open book! - check it out people. We need as many folks writing to our government officials to ensure funding for research and a cure for pancreatic cancer is found sooner than later - too many lives depend upon it. Again, when the survival rate has not increased in 40+ years, and we are still in single digit survival, there is a significant problem. With breast cancer at a 96% survivability rate, it just shows anything is possible... So many cancers are now considered curable - Ed's is not one of them. Pancreatic Cancer is almost always a death sentence... this needs to STOP.

Also this week, Ed and I had the pleasure of meeting the lovely people from the Pancreatic Cancer Action Network Cleveland Affiliate Group - what a great group of people. Look forward to getting more involved during the next few months! The Cleveland Purple Stride event for 2011 will be June 18 at the Cleveland Metro Parks Zoo - how awesome is that. Our Zoo rocks! I cannot wait to see our beloved Elephants again :) Yeah.

Ed opted out of treatment this week as the last one took such a toll on his body, he will get a CT scan in two weeks to find out what is going on and then we will decide about future treatment after that. Hopefully, we will get to Long Beach, CA sometime in late Feb. or early March and go to Rational Therapeutics for Tumor Cell Profiling to identify if there is a chemo that would work on Ed's cancer cells... Will keep you all posted, but we really won't know anything for several weeks.

Ed had a great week, did a lot of stuff around the house and is looking forward to the SB and his band's next gig: Sat. 2/19/11 at 8:30 p.m., The Winchester in Lakewood! Come join Ed and Newport, with new super-star drummer, the incredible, 14 yr. old Mr. Rex Larkman! All Ages Show - bring the Family! (Some of the song lyrics are a bit pg13)

Now - let's just hope that Pittsburgh & Baltimore are stopped in their tracks, I don't want either of them in that game in Dallas! Gosh I love football!

Peace....... MK & Ed

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