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

Tuesday, January 25, 2011

Fox 8 Story on Super Bowl

Click below to see & read our little story on our upcoming trip to Super Bowl 45! :)


Fox 8 News clip

Hopefully this link will work better than the last one to The Post. Here is our little Super Bowl story that will be on Fox 8 News tonight:

Monday, January 24, 2011

Fox 8 News Interview

So, Annette Lawless, from Fox 8 News was here today and interviewed Ed and myself regarding our upcoming Super Bowl 45 trip.... We, of course, touched on pancan, education, the need for increased funding and research, knowing family history and how excited we are to go to Dallas next week.

Ed was his handsome and charming self. Annette was lovely and it was a pleasure to meet her.

On another note, I'm freezing... this cold weather needs to be done... I'm tired of having cold feet and a cold nose... sounds like I am a dog. Dogs, I miss my Oscar Meyer but I don't miss his accidents all over the house. It was nice to have him sleep on you when it was cold like this. I will probably get another dog someday, but it will be a rescue that is house trained.

Well, stay warm everyone... Ed and MK xo :)

Saturday, January 22, 2011

The Post Article and Fox 8 News

O.K, the link to article seems to be broken... try this link and the story should come up:

If the article shows a broken link, re-try the link below, it will come up as a broken link on a google page, click on the name of the article again, it should pop up in a search type listing and click on "cached" view to read... I don't know if that makes any sense, but good luck. Also - Fox 8 will be interviewing us today thanks to a great family friend who took our post article into his office this morning! I'm gonna make that boy a super-star yet! Woo Hoo... Next up will be 2/15 on with Ed and the boys of Newport to promote their 2/19 show at The Winchester :) I guess all that is left is getting him into a Movie - :)

Thank You Terry... Great article! Enjoy everyone....

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

Friday, January 7, 2011

REALIZING HIS DREAM - Pittsburg, KS - Morning Sun

Read this story - it just goes to show that the Dream Foundation really does take ordinary people's dreams and make them a reality... Let's hope the same happens for Ed!

REALIZING HIS DREAM - Pittsburg, KS - Morning Sun

Saturday, January 1, 2011

1-1-11 cool

Just wanted to wish everyone a Happy New Year. I love the date today, it's cool.

Ed has had a horrific week, sick every day - this chemo kicked his non-existent butt. I don't think he will be able to handle this treatment for any length of time. It is hard to watch him suffer, I do not handle it very graciously, unfortunately. Again, I get more mad than anything. I want the medicine to work, but not if it's going to make him so sick - Ugh. We really need to get him to Cali for that testing -I know it's foolish to think he will get any better, but hope is all you have when you are in this situation. I think his boy's are going to plan another fundraiser so hopefully we can get to the testing pronto. He was too sick to do anything last night, but that was o.k., staying home on NYE is no biggy for me. I actually watched Eclipse and really enjoyed it, I love me some vampire/werewolf action. I even watched it a 2nd time, but fast forwarded through the boring parts so I could turn on Dick Clark exactly 3 minutes b4 midnight - then went to bed - Ha. Forgot to wave money at the moon at midnight though, awwwww, no prosperity this year, guess we are not winning the lotto, bummer.

Today I will be having pork at my Mom's - Yummy ;) My favorite meal of the year is pork & sauerkraut & dumplings... mmmmmmmmmm... then, the big day tomorrow, for me personally, the BROWNS -V- STEELERS GAME - Hooray... Hoping Ed feels better tomorrow! He had his injection for white blood cell production yesterday morning so hoping that it kicks in & he feels better for the game. I will be sporting my very large (2x was all they had left) Hillis Jersey... Yeah. Ed asked me yesterday, if we make it to the Super Bowl, you gonna wear your Hillis Jersey, Um, Duh... Hell ya! I can pretend there is Brown & Orange on the field, I have a great imagination. I at least hope one of my favorite teams makes it to the SB so I can actually cheer for a team I like. We will find out soon........ Yeah Football!

Have a nice weekend everybody.... Monday it's back to the same-old, same-old, so enjoy today & tomorrow as much as you can.

Cheers........ MK & Ed xo