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

Monday, July 11, 2011

Mid July

Well, when I posted on June 30th, little did I know that July would be a completely different experience for Ed...  It has not been a good two weeks.  And, it really started on the day I last posted.  Ed decided he was going to shoot hoops in my drive-way that evening, I told him not to do it, but he really doesn't listen to me.  Standing there shooting was fine, but once the ball got away from him and he kinda ran to get it - he stumbled.  Now he twisted his back a little and the spot where his bone cancer is flared up big time...  The look on his face when he stumbled was completely & utterly frightening.  I swear I could feel his pain - plus it scared the crap out of me...  What's the name of my book ladies...  "Men are Idiots (Even with Cancer)"!!!!   Since that day, he has really not felt well at all.  To top it off, the entire 4th of July weekend he had pretty bad stomach issues - turns out, he was forgetting to take his Prilosec, he did this for about 5 days then realized, oh, that's the problem.  I wanted to strangle him. 

So, lets move along to the next weekend....  Ed moved... Yes, he moved?!  WTF...   I mean, moving is stressful enough when you are a young person & healthy - add to this our age & his illness - UGH.  His boys came over Sat. and moved all the heavy stuff for him & got him pretty much situated in his new Acre house, and on Sunday, me and his girls moved the rest of the kitchen stuff and then I proceeded to clean the empty Acre house - I am so sore today!  But, it is DONE.  I did not support this move at all....  So, if anyone else asks me, why did Ed move - All I can say is - Ask Him.   Now he lives right next door to my Dad, another thing I was not too thrilled about - but that's a whole different book people.

I am hoping that Ed uses the brain God gave him and rests this week - He really needs to take it easy if he wants to enjoy our upcoming weekend at the cottage & for Friday's big Monsoon Lagoon Fest...   I have a feeling that this year's fest is going to be really calm & relaxing - which is fine with me!

Hope you are all enjoying your summer so far, it goes so fast. - Join us on Friday, 7/15/2011 from about 12:30 - 7 p.m. at the Lagoon - The kids can go-cart all day & us grown ups will be turning that pool-bar into a Par-Tay. 

Peace - Ed and MK