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

Monday, March 14, 2011

One More Day Till The Big 48

Hi Everyone - Happy St. Patty's Day Week!

Well, It wouldn't be Ed's Birthday week without the Dickey's Annual St. Patty's day party under our belt. And, well, that it is. It was, as always, just a great party. The corned beef was awesome, the beer was cold, the Lemonaide/Vodka punch was delicious, and the great friends in attendance just made it such a fun night. It helped that Ed and I won on the side board with the number 48 - every year I buy the number that matches Ed's age he will be turning the week after the party. This is the second time in five years that we have won on that number. Thank You Side Board for paying our cab ride home. And, boy, I needed that cab ride this year. Thank you Mr. Yaegermeister (sp?)! I am traditionally not a "shot" gal, but for whatever reason, i.e. Darlene, Janet, Barb, Mel, MaryAnn, Sandi, Darcy, Lisa, Paula, JoAnn, another Jant, Melissa G..... the mood was just right! Secretly, I am glad I don't do that very often.... But, the evening was so reminicent of when we were in our twenties and didn't have a care in the world. I am blessed with the most awesome girl-friends ever. What would I do without you ladies! We may not see each other as often as we would like, but when we do - It Is Always A Party, and for that I am very grateful!

Speaking of girl-friends, I found out my very, very dear friend J had a heart-attack on Feb. 1 and she didn't want me to know because I have so many other things that I am worried about right now. I just found this out on Friday - March 11 - 1 month & 10 days later - UGH! If any one of my friends is ever sick or hurt - somebody better let me know. I love you Jay and even though praying is something I am very conflicted about right now, know you are in my thoughts continuously!

So, Edward turns 48 tomorrow! I hope my sweet man has a glorious Birthday! I love him more every day, and every day he continues to astonish me with that positive attitude. His pain levels remain quite high and it is difficult to witness. I am truly mortified that the medical community doesn't have a better solution for this. So frustrating. Ed has discontinued the Hydrogen Peroxide therapy, it made him pretty sick after a week of trying it, and he just cannot stomach the smell or taste of HP now. :( So, we are kinda back to square one. It breaks my heart, but it is always his decision / his body. He may consider trying the chemo pill later in April, after his fishing trip with his Boys to Key West... We can only hope that the pill will cause him less side effects than everything else he has tried so far. He is the Side Effect King - if there is a "possible" side effect to be had, he seems to get it.

Needless to say, I was none to pleased with his fishing trip, originally, that is. I mean, 7 days in the Key's with the Boys, come on... We have never gone away for more than 3 nights at a time, even the Super Bowl was supposed to be 4 nights, but because of the snow, turned into 3 nights. Well, Ed redemmed himself, and we are going on a "P"honey Moon in May, for 8 nights.... So Yeah! I just pray that his health will hold out and we will actually be able to take the trip. We are realistic enough to know that travel insurance is a necessity at this time, but we remain optomistic that this trip will become a reality! So, 7 night cruise with a one night stay in SanJuan after.... St. Thomas, Barbados, St. Kitt's, St. Lucia and St. Maarten.... We have a balcony room on the Veranda deck, everyone say ooooohhhhh, I am just too excited. I figure, Ed can rest as much or as little as he needs, and me, I can sit on that balcony and read for 7 days and be perfectly content.... Ocean, Sun, Book - I Am Golden! Ed was worried he would be bored on a cruise, he's never been obviously, now, I have been on 9 (I think, it might be 10), if you are bored on a cruise - it is your own fault. You can do as much or as little as you want on any given day or night... It is all up to you. I just love St. Thomas and am thrilled to share that island with Ed; St. Maarten (I know I'm spelling that wrong) is just o.k., but I have never been to the other 3 ports and am very excited ;) In 4 Weeks Ed get's fishing & the Boys, in 8 Weeks Ed get's a Phoney Moon and the Southern Carribean.... Then, what he is probably looking forward to even more, the planning of Monsoon Lagoon Fest #3 (MLF#3)... And Ironically, as I was typing this, I get a call from Janet asking if we have our date picked out yet for MLF#3 'cause they do not want to miss it! Good Stuff!

So - not too much about the disease today as Ed continues with no treatments at this time. Obviously, the other things we were looking into, i.e. Rational Therapeutics, did not pan out. It is truly like the medical community really does just write you off when it's the pancreas. So incredibly heart-breaking.

We also have our Cleveland Purple Stride Event on June 18th at the Zoo to get ready for! Remember, you can join our team or make a small donation if you'd like; Research is sorely needed and this is the group that is making that a reality! -or-

Happy Spring Everyone.... Let's go warm weather, we are READY!

Peace - Ed and MK

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