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

Tuesday, July 26, 2011

Our 9 months are up

Well, He did it - He hit the 9 month mark...  Ed did exactly what we all knew he could do.  In November 2010 the Doctor's said he would have about 6 - 9 months.  He has officially hit 9 months!  Anything after this week is precious, precious, precious, precious time.  Have I made myself clear - PRECIOUS time.  TIME....   Time - the most important thing you can do right now is try to spend some time with him.  This Means If You Choose, Right Now, NOT to spend time with him, and You Can , I assure you, you will regret this at some point down the road.  I would cut off my left arm to be able to take a leave of absence from work and do what ever he wanted, whenever he wanted, however he wanted.  Unfortunately, life goes on and this is not to be.  I take as much time off as I can possibly afford, but it will never be enough. 

Due to the nature of my mood and feelings on this, I will refrain from writing too much more on the subject.  It would only get me into trouble and would probably really piss Ed off.  

We do have some fun things coming up and I hope Ed will be able to muster up the strength to enjoy them all, we have the Tribe game tonight - thankful that the weather today is a bit more bearable than it's been the last 10 days!  Sucks that Brittany is down at the Q - traffic will be a beast.  Frid. after Ed has his biophosphinate infusion, we may go to the lake for 1 night so he can fish.  We have a big BD bash Sat. night for the outstanding Mr. Greg H. - Happy 50 Man - we luv ya.  Please don't wear that kilt!  I believe the Spiwak's will be in town the first week in Aug. and we are so looking forward to seeing them for a quick drink or two (BHS'ers, let me know if you want me to "make a plan");  Rex - man, the big "15" on 8/6 - You know we wouldn't miss that; AND, the BIG event - Alice Cooper show, 8/9 - Front Row tickets for his biggest fan!  I believe I have to watch several Alice video's over the weekend so I am well prepared for the show;  Paige is going on her first big solo trip to the ATL in August - oh, yes, I'm scared crapless about that;  We have Ira Dean coming to town on 8/11 - show in Akron, Partying with Jennifer & Phil that same week - we hear a rumor that Brother Trouble may be in the OH-IO on 8/13 - if they are - we will definitely be partaking in that party!  Another Tribe game 8/22.  Our Yurt weekend at The Wilds got moved back to the 26th due to the mayhem of that 2nd week in August.  This just means I can have another "alone" night with Ed :)  School starts on the 25th - O M G!  Then if we are blessed enough to make it to September, we can relax!    And, yes, we know that all of the above can change at any minute of any day - but we are going to try and make August as event-filled as Ed's health can handle...  Because, It's Precious Precious Time!

I sincerely hope that everyone reading this enjoys the last bit of summer!   We wish for you all - Good Health! 

Addendum:  ** 7/27/11:  Well, we did hit the tribe game last night, Ed only made it through the 6th inning; he became quite sick and his pain levels spiked to probably a 9.  Sitting at the game, looking at his eyes & face, I realized he is becoming jaundice.  We knew it would happen, but I was not prepared to be sitting at an Indians game and realize that the yellow in his eyes & skin is really setting in.  You cannot tell so much in the house, and I believe that is why I had not noticed until yesterday.  Sitting in the sun, it is pretty obvious.  He has blood work today and will talk to the staff on how we proceed from here.  He is so skinny and weak right now, that I don't think he would be able to survive surgery to have a stint/shunt put in, which so many pancreatic cancer patients have done. 

So, again, I will reiterate - if you have not spent time with Ed this summer - you really need to check your priorities and make him a priority pretty damn quick.  Anyone wanting to visit him is always, always welcome at my house!  We are nearing the end of this battle, our hearts are broken but we remain hopefully that he can tough it out a while longer - because, you know Ed ....  It's football season & he wants to see his beloved Brownies play some great ball! 

To the outstanding woman at the Indians game who pushed him in a wheelchair all the way to our car... Thank You.  Turns out her father is battling PC right now - What are the f'ng odds of that?  God Bless you, I wish I could remember your name!  You were a doll and we appreciate the kindness.
Ed and MK


  1. We are looking forward to spending another weekend with you both! Hope that Ed is feeling strong today...xoxo Phil and Jen

  2. MK and Ed... I just read the blog and you continue to amaze me with words. I am touched by your willingness to share some your deepest feelings. I cannot imagine what the two of you are dealing with but I can and will continue to send you my prayers. If there is anything that I can do for you guys...please call me or call Barb (LOL) and we will be there! Love you guys... Sandi Stack

  3. I hope you don't mind but I re-posted your post on our blog in Denver. I found your strength and willingness to share your journey inspirational.

    We lost my mother-in-law to pancreatic cancer six years ago on Thanksgiving Day. Ever since then, we've been dedicated to fighting the cause and finding a cure.

    We are sending lots of positive thoughts your way. Make sure you get the support you need as a caregiver. It helps you stay strong and be stronger support for Ed.

  4. Dear Denver - I don't mind at all, what I do mind is that you had to go through this hell as well. When it is going to get the attention it needs - when is enough going to be enough. When will the NCI and gov't wake up and see the need to really push the research in this area. My heart is completely broken and I don't know that I will ever recover from this experience. All we can do is continue to fight. God bless you & yours, MK


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