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

Thursday, June 30, 2011

June Is Over?! Nooooo

Hi Peeps, 

I just cannot believe that June is history after today, I mean, really - that flew by :(    It was a great month!  Ed's pain remained in control the entire month of June, we attended the 2 night LOPen event, we hit the cottage for one weekend, we had our outstanding PurpleStride event, we had Lauren-Fest '11, we got to spend some time with my out-of-town relatives, Ed had an out-of-town cousin visit him as well, summer school has been a success (so far), my sweet man gave me an awesome birthday gift of a trip to The Wilds (; we are going for a two day, 1night stay in August - I am so excited to sleep in the Yurt, I mean, it was a very good month!  Plus, Yurt is my new favorite word ever.  I'm thinking, prior to going to The Wilds, we may pop over to PIB for a Wed. & Thursd. night, or possibly head to C-Bus for a night or two...  Doing that OH...   IO   vacation thing.  Anyway you slice it - it should be a nice mini-road trip around Buckeye Land :)   Also for my Birthday, my darling daughter got me a new James Patterson novel, I will dive into that this weekend - yeah!  Got lots of great cards & well wishes & spent a nice evening with my Mom, Ed, and Aunts & Uncles & Kimmy- you really just gotta love a night like that.

We will be heading back to the cottage this weekend, then we will have the Furda's annual 4th of July celebration on Sund. (and possibly Mond. - ha)!  I am stunned that this is the 6th year I have celebrated this holiday with Ed and our friends - man did that time FLY by!  Ed is all excited about fishing this weekend because it is now legal to eat bass  - um, Oh Joy (said in monotone/slightly sarcastic voice)?!?!  Not a big fan of bass, but if he catches one worth eating & wants to clean it - I'll eat it.  That's Love people.

A dear friend of mine lost her Uncle this week to lung cancer, I am sad for their family.  But, it was one of those strange things that sometimes happens - it was truly a sad occasion, but one of Ed's former football coaches (and he was my 7th grade earth science teacher) was at the wake.  Mr. Mikes looked at Ed for a few minutes and said "Eddie, right?"  I mean, come-one, we've been out of school for 30 years people - that just goes to show you what kind of impression Ed makes on the people he meets and how special that team was.  Anyway, Ed and Mr. Mikes must have talked for 45 minutes or so about that '80/'81 football season, Ed was beaming....  It was a pleasure just to stand there and watch the interaction, truly.  He was like a teenage boy again.  So, as sad as the reason for being there was, we had that small silver lining that I have talked about previously.  Now, Ed may try and get the "team" together and re-create a "Momma Mikes Dinner" reunion.  I think this is a fabulous idea and would be greatly enjoyed by all the guys.

Ed had a good month, we are trying to fatten him up, as he is still around the 165 mark, but... it is what it is!  He feels really well overall, and that made for one heck of a month!  Here's hoping that July will bring us much of the same...

Peace & Happy Summer Everyone!
MK & Ed

Tuesday, June 21, 2011

PurpleStride 2011 - Huge Success

See the slide show from our event!  It can only have 35 pic's, believe me, there were a ton more!   It was an awesome day and the Cleveland Affiliate raised over $175,000 for this very important cause.

If you missed out - you missed something very special!   This was a true celebration of the people who battle this monster every day...   For our loved ones.

2,500 People at the Zoo - 18 survivors - Something Is VERY Wrong with that survivor #....   Ed is considered a survivor because he passed the 1 yr. mark - Um, we need to make changes NOW. - go to an event near your home & let's make a difference.

We had one of the GREATEST teams imaginable!  Next Year, let's do it again:  6/16/2012 at the Zoo.

Wednesday, June 15, 2011

Purple Stride Is Saturday!

Wow - it's finally here!  PurpleStride 2011 Cleveland...  This Sat., 6/18 at the Zoo....  If you didn't register on-line (which is closed now) you can still show up Sat. morning between 7:30-8:30 a.m. & register in person to support our fantastic cause.  Also, we will be at the BW3's in Strongsville on Pearl Road on Friday 6/17 to distribute our team packages - if you want to come up & see Ed, we will be there between 5 & 7:30 (or whenever) hangin' in the back room.

Some facts for you incredible folks still reading our blog:
  *  Key facts about pancreatic cancer:
Pancreatic cancer is the fourth leading cause of cancer death in the United States.

Pancreatic cancer has the lowest survival rate of any major cancer. 94 percent of pancreatic cancer patients will die within five years of diagnosis – only 6 percent will survive more than five years. 75 percent of patients die within the first year of diagnosis.  

There are no early diagnostic tools and there is no cure.

In 2010, 43,140 Americans were diagnosed with pancreatic cancer and 36,800 died from the disease.

It is the most under-funded, under-recognized and least-studied of all major cancer killers with only two percent of the National Cancer Institute’s annual budget dedicated to pancreatic cancer research.

I hope by reading the above you can understand why I am fairly passionate about funding & fund raising for research for this horrific monster.

Ed is truly excited about this Sat., which is not about the statistics, but about hope & the future, and our awesome team of 78 people who have raised a little more than $4,000.  Ed's All Star Dream Team is truly just that, a Dream Team!

We have had a few GREAT weeks.  We attended the LOPen fund raiser for the Akron Children's Hospital specifically the Showers Family Center for Childhood Cancer and Blood Disorders, and it was incredibly rewarding.  We met and spoke with some of the artists - please check out Brother Trouble - I am in love with these two brothers from South Carolina, they have that country-rock mix that makes their music so much fun!  Ira Dean & his girl friend Brooke Burrows also rocked the stage on Monday Night.  Sunday night was Thomas Ian Nicholas, from Rookie of the Year & American Pie movies, Chris Barron the lead singer from the Spin Doctors (Two of the nicest guys you'd ever want to talk to), Great White & the Lead singer from Bad Company.  I got my picture taken with Sandy Alomar, I was a little too excited.  And, our new friends Jennifer & Phil Lopez, were the best hosts ever!  We were also privileged enough to spend a little time both nights with Jim McMahon and his lovely wife Laurie.  I called him Mr. McMahon, he told to me not too, it was a little funny.  Sure, I'll just call you Jimmy Mac like everyone else, Ha!  I mean, He Is A Super Bowl Quarterback - that doesn't happen every day.  They are very sweet people and they made Ed a very happy man!  If Ed can pull this disease out of his ass and get working on that immune system, and if there is a footballs season, I think we WILL be in Indy for the next SB!  Check out the celebs that were there here:!/media/set/?set=a.174820392567562.36377.152898618093073.   Special shout out to Laurie & Jennifer - you guys are the bomb - again, if there is a silver lining to everything, even this catastrophic disease, it is meeting people like you and your incredible husband's...  There Are No Words.  Just, Thank You.  Oh, and the Jaeger girls - you ladies were a riot, even though you did severe damage to me on Sunday evening, I was back again on Monday night to do it all over again.  I highly recommend supporting this event in the future if you can!  Great Cause & Great Fun.

Ed is still down about 25 lbs. and needs to really just take his days slow & easy.  Yesterday he pushed it and it really showed by the evening.  It's not easy to watch.  We have been engaged exactly one year as of yesterday - who gets engaged on Flag Day - Us.  At Put-In-Bay, over Walleye Nuggets at Mossbacks ;)  

Oh, and Lastly - 3rd Annual Monsoon Lagoon Fest - Ed has planned our next Lagoon Fest for Friday, July 15th any time after 11 a.m. - Swim Up Pool Bar, you are gonna be our Bitch!  He is looking to beat our bar-tab record of last year...  So Come and Join us if you can!  Here is the info on the Lagoon:   If you go under the "plan your visit tab" there is a place that lists local motel/hotels if you want to stay out there that night!  It should be a hoot & a half!

Love to you All........  Ed & MK :)

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