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, June 1, 2011

What A Roller Coaster Ride in May

Well, the last time I posted on May 10th, who knew that the next several days would turn into a complete roller-coaster ride.  On Tuesday night, 5/10 - Ed had a fairly severe melt-down (for lack of a better term), his pain levels were at 10+ and he hadn't had any real sleep in months.  He was home with his kids and just felt completely unable to do anything.  He toughed it out that night with the help of his oldest daughter - Katie - no words are enough to thank you for being there for your Dad.

On Wed., May 11th, Ed went into Hospice for pain management & severe sleep deprivation.  He was in that awesome hospital bed for all of ten minutes and already started to feel some pain relief because of how the bed was able to be positioned.  The team of nurses and the doctor at hospice were fantastic.  They worked for five days to find a medication regimen that would work for Ed as his old med's were not working at all anymore.  We had to cancel our seven day cruise so we were a little bummed out as the weather here was so horrific and we both needed sun in the worst way.

Ed had so many visitors in hospice, his friends continue to amaze me in their dedication to his well-being and the love they have for him.  Again, there are no words.

Ed was released from hospice on Monday evening, May 16th...  We made the decision that night to book another trip, we knew if we didn't get away immediately, that we would never do it.  June is bringing us so many events, that it was "now or never".  We booked another cruise and wound up leaving on Wed. May 18th for Houston, Tx.  We spent one night in Houston, then on Thursday morning, 5/19, we traveled to Galveston and got on our cruise ship.  We managed to snag the last balcony room on the ship - for that I was grateful!  Thanks to Linda who helped me make all these last minute plans!  Room in Houston, transportation to Galveston & booking the cruise in less than 48 hrs.  It was insane y'all.  But so worth it.  We had a fabulous cruise - it was a little choppy and for the first time in my cruise history, I had to take some motion-sickness med's.  It was my ninth cruise and I continue to love that vacation choice.  It was a smaller ship, but perfect for Ed as the walking distance between our room, the pool & the dining room was fairly easy to navigate.  We gambled a little as neither one of us are "big" gamblers.  I found the best slot-machine - it was called "99 bottles of beer"...  I thought, man, if I don't win on this machine, I won't win on any machine.  On our last night, I hit for $120 - for me, that is a big deal.  So, I probably broke even for the four nights.  It was hot & sunny once we were out into the Gulf and Mexico was scorching.  Both of us didn't sun-screen as well as we should have.  Ed had a pretty bad burn on his right calf - not the left mind you - just the right.  And I scorched my back.  I rarely burn, so for me, not fun.  We met the cutest couple ever on our last day at sea and just enjoyed the hell out of that entire day!  Thank you Brad & Lara ;)~

Then we came home & it was back to the grind. Work, school, soccer, etc...

Now, as we enter June, we gear up for a couple of very cool things.  Paige's soccer team is in tournament mode right now, they have won their first two games, have one more tonight, if they get that W, we are on to the championship game on Friday night!  Go Pink!  Ed will have his first Indians game of the season on Friday night.  Sat. (after my adorable daughter is out of Sat. morning detention) we will head to the cottage for the first time this season - Ed is chompin' at the bit to get his pole in the water (does that sound dirty?)  Then we will come home on Sunday afternoon and get ready for the Akron Children's Hospital charity event, the "Lopen" (, we are pretty excited to see our friends Jennifer & Phil Lopez who we met at our Super Bowl party and we are thrilled to be able to pay forward to another great charity!  Then our June continues with Lauren-fest 2011 on the 11th - Lauren is our good friends daughter who is graduating from high-school this year and by far, on the sweetest girls I have had the pleasure to know.  Then, for our main event of June - PurpleStride 2011, Cleveland...   This should be a fantastic day to celebrate life...  not the opposite!  Our team is huge, I think we are at 45 strong - so thank you Ed's All Star Dream Team...  I'm back to what I said earlier in the blog - there are no words... 

Ed had a rough May to say the least, but it ended well for him and his pain is under much better control.  We have a hospital bed in my living room, which I truly believe helps him sleep better.  The fact that he is now under the official care of "hospice" was a very sad reality to deal with, but he is determined to make his summer as positive and memorable as possible.

I continue to admire and love this man with all that I have and will continue to support him in every way possible.  If you and your loved ones are healthy - appreciate it every single day.  As the saying goes, Life Is Short, don't waste it.

Peace and Happy Summer to All.
Ed & MK

1 comment:

  1. Ed and MK, In my quest to offer a repository of successful alternative cancer treatments I stumbled upon the story of Tricia Spence who had stage IV breast cancer. The metastasis was to her lymph nodes and L1 and L4 vertebra. Please revisit my blog at and find the post Tricia's Amazing Journey that links to her story. Evidently she's had a conplete recovery. It's truly inspirational! Hopefully her experience can help Ed. Best Wishes, Rosanne


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