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

Wednesday, March 30, 2011

Team Ed fundraiser POST PONED

From Sandy H., who is on Ed's Team from the Purple Stride event at the Cleveland Zoo on 6/18/2011... If you are in the area, stop by for some lunch or a snack!


Got my temporary food handlers license application for our Team Ed fundraiser!!! Hot dogs, chips and fresh squeezed lemonade in front of the WalMart on Ridgewood Drive in Parma

My Passion

So, no spell check still, so be prepared for many, many spelling errors and type-o's. It's late.

I have been alone tonight. Paige is on Spring Break and is making life much more difficult than it needs to be. Yes, I love her, but man, girl, get it together. She is at a friends and needs to thank that Mom for watching out for her. She knows not how ugly this world is yet, she will learn and unfortunately, she will probably learn the hard way.

I watched "Dear John" tonight. Writing. It is so powerful. The movie was more than I expected, and made me cry A LOT.

As I watched this movie about a young woman who had only two loves in her life, I thought, man can I relate. If you are reading this and you know me, you know that I have had very few real relationships with men. The first, the "high school sweet-heart", but oh, not so sweet. I spent 13 years with a person who manipulated me and treated me with much disrespect. But love is blind, and I needed a seeing-eye dog. From the time I was 13 till I was 26 yrs. old, I believed that he was the one, he was who I should be with, he was the one who would always own a piece of my heart and soul. Not true. Not-so-fast-forward to today, 48 years old, and in love with who is truly the only man I have known true love with. Did I have others in between, I did, but very, very few (you can count on one hand, and not include the thumb). I am as loyal as they come, when I give myself away, I give all that I have. Ed will always be the only person on this earth that knows me inside and out. Good, bad, ugly, moody, happy, loud, crabby, excited, touchy, sensative, angry, elated.... And, he accepted me in all those ways, no questions asked. We love each other in a way that is deep and special, it will never be matched again. Do I hope that when he leaves us that eventually I can move on, I do, I truly don't want to grow old alone. Will there be anyone as special as him again, never. He is an extra-ordinary human and I know in my heart I should be thankful for the time we had and the time we still have together. And I am, but I am also angry and confused and sad. Why cann't someone fix this man I love so much, why can we send men into space and build nuclear reactors and have internet and have everything we have, but no one can fix him. Someone needs to fix him. Someone needs to take away his pain. Someone needs to know that life will be awful for so many of us when he leaves. Someone needs to reassure me that there is life after death so I know that I can have him again. There is no one that can do that. There is no one that can fix him. There is no one that will ever take his place on this planet. There is only a small amount of hope right now and every day I search for someone or something to give us more hope. I am failing.

When he is gone, and all that is left are our memories, I hope it is enough to get me through what will surely be hell on earth. I watch this man suffer and I hear the pain in his voice when we cannot be together and my heart aches in ways I didn't think was possible. Thank goodness for the new people in our lives, the people from the Pancreatic Cancer Action Network, they are living this nightmare with us, they will be the people that will get me through, they will give me a reason to fight his fight and move forward, they will be the people that help find the cure, they will be an important part of my future.

Then there is family, my family is too incredible for words. My family loves this man like he has been in our family since he was a little boy. The support and love they show him is unmatched. I received a text tonight from my cousin in Atlanta letting me know his plane reservation has been made so he can be at the Cleveland Purple Stride event on June 18th at the Zoo. Then, he proceeded to let me know that my other cousin will also be there, she lives in Charlotte, NC...... There are no words. They are my heart. This is how I know, there must be a God. This is how I know, I should still pray. This is how I know that love and family are truly all that matters on this earth.

Edward James you own my heart and soul and I will never, ever give up on your fight as long as there is a breath in me. You brought me back to life, you gave me more joy and happiness in the past five years than I thought was possible. You, my sweet man, are a gift to this planet and when you are gone, the world will not be nearly as nice of a place to live. So stay please. Fight please. Call another doctor please. I need you, as do so many other female humans on this planet. You are plagued by the female of our species, we have consumed your life, we need you. You complete us! Funny, right.

Plus, you get to go fishing in two weeks....... Ugh.

I love you with all my heart and soul, and as we used to say way back when this started....... ILYSMEJD...... me xoxo

Saturday, March 19, 2011

One Year Ago Today This Nightmare Began


One year ago today, Ed drove himself to the ER at SouthWest due to the blinding pain in his middle back. The pain was so intense he couldn't even see straight. And so the nightmare began. Three day's in the hospital on a clear liquid diet so the pancreas could calm down - he was diagnosed with acute (well, not so cute really) pancreatitis. He was miserable, but, hope was presented as the physicians insisted that the small mass on his pancreas was "most probably" a cyst, not a tumor. Yeah, go ahead and make the Arnold jokes, "it's not a tumor"... But in fact it was, and it was a mean one.

3/19 - Ed is admitted to SW for 3 days with acute pancreatitis. Gastroenterologist (GI) asks Ed on Sat. 3/20 what Ed's personal internist thought about the mass on his pancreas? Back in Aug. of 2009, Ed had passed a Kidney Stone and the mass was identified on the scan? Um, Ed and I just kinda looked at each other and were like "What The........." His internist never disclosed that information to Ed. So, what could have been caught in a much, much earlier stage of cancer was not. I truly hold that man responsible for giving Ed his poor outcome by not telling him about the "mass". His reponse to Ed when Ed called him from the hospital, He didn't think it was anything to worry about. I AM HERE TO TELL YOU - ANYTHING ON YOUR PANCREAS IS SOMETHING TO WORRY ABOUT! If you have a doctor tell you this, get another doctor - go to a GI guy or specialist, but fight for yourself, be your own advocate!

3/30 - Ed has an ERCP (scope down his throat to look at the tumor (oh, my bad, they still were insisting it was a cyst)... No biopsy done, just watching it for now. Surgeon looks at results, does not like what he sees and tells Ed surgery is not an option yet.

4/27 - Yes, an entire month later, ERCP #2 - this time they take fluid out of the tumor, report comes back with high levels of pre-cancerous cells in the fluid. This is really bad news.

5/14 - 2 weeks later, ERCP #3 - solid material is removed from the tumor, they test it right then and there, they do it I believe three times to be sure - I am the last person in the Lakewood Hospital atrium and it is scary as crap. Dr. comes out to tell me Ed's tumor cell marker (CA19-9) is the highest he has seen at 25,548. He has stage III pancreatic cancer that is border-line resectable (cannot have surgery) because it is attached to his 3 main arteries/veins (portal vein, superior mesenteric and celiac trunk).

On June 3, 2010 Ed started his chemo - And, since then, you guys know the rest of the story.

So, we bowl tonight for the last time this winter, which means spring is here - well, we can hope anyway!

Peace Ed & MK
PS - I don't have spell check anymore on my blog? So, it will not be as awesome as it used to be, I usually don't catch my own type-o's and I am a terrible speller.

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

Wednesday, March 2, 2011

Follow up story in The Post

Thanks for the follow up story Terry! Sorry I was unavailable, such is the life with a teenager who thinks all that matters is her social life! God Bless!