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

Friday, August 5, 2011

August 5

Hi everyone, I know a lot of you were anxious to find out what happened this week.  Well, it wasn't good news.  The stint could not be placed endoscopically on Wed. due to the area being to compressed by the pancreas and the tumor.  Option was to have a drain placed through his side to let the bile drain into a "bag", however, it would not change his appetite, his pain levels, his ability to sleep and the risk of an internal infection is very low right now - in other words, all it would do is make him not yellow & alleviate some of the itching caused from the bile seeping out through the skin.  Shit, he could be pink for all I care.  So, we are sitting on the decision for now.  Placing the drain would leave him with an open hole and this is not something we are quite ready for.  Unfortunately, the ERCP did identify that he has a stomach ulcer due to the amount of motrin he has been taking, so he is off motrin for now in hopes that this could heal.

His pain medication was re-adjusted yesterday and we are in the process of having hospice visit him, possibly, on a daily basis.  We will also be getting him a wheel chair so if he does want to get out of the house for a while, he won't have to walk and I think that will give him some incentive to stay a little bit active.

His physician and nurse were a little astonished that he still drives as much as he does, but I explained to them that he is very stubborn and isn't quite ready to relinquish a lot of his independence.  His weight is a scary 143 lbs. and watching him waste away has, by far, been the hardest thing I have ever endured in this lifetime.  I feel for the families who have endured this horrific disease.  I know, my life is forever changed, some ways bad, some ways good. 

I am feeling very bitter these days - but, family and our friends make this journey bearable for me.  We have been blessed with outstanding friendships and have been able to make more as we have been on this path.  Most of you know who you are. 

We will keep you all posted as we move forward, but am saddened to say that the news from this point on will probably be of a sad nature.

All I know is - Alice Cooper is waiting for him this Tuesday and come hell or high-water, I know he will try to get himself to a point that he can at least make the show for a little while.  I figure with the wheel chair & his meds adjusted, and maybe some help from his herbal supplement, we will find a way to make it work.

And, on a side note, Stefanie M. from the Pancreatic Cancer Action Network, Cleveland Affiliate, is working hard on our first ever "Casey Coleman Day" down in the Muni lot on September 25, 2011 before the Browns/Miami game - so if you are a tailgater, please find us and come pick up a free gift, get informed and see how you can help us in our battle!

Peace, MK & Ed


  1. God bless you both.. You both have been and will continue to be in my prayers. Thank you both for your courage and strength to share your personal journey. It truely is an inspiration to those who are going through either the same or other circumstances.


  2. Keep the fighting Huricane spirit up ED! Don't give up - you are a fighter and MK is in your corner along with the 1981 class.

    You and MK are in many peoples prayers and thoughts including mine. The candle is lit at church every week. Your in my prayers.

  3. MK.. Positive thoughts and my prayers continue to flow to Ed and you! Hang in there and God bless the both of you! ~ Jerry P. BHS '87


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