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, February 22, 2011

Hydrogen Peroxide Therapy

Hello Everyone,

It amazes me that February is almost gone... Unlike the rest of the world, I think people faced with a terminal illness and are handed the "you have this many months left" diagnosis, the beginning of a new month is not very joyful. It just means you are one month closer to that fate that has been assigned to you. I cry a lot at the end of months because of this reason. So for those of you who insist on reminding me of how strong I am, I am not. I am a normal person with a realistic handle on what is happening in our lives. You would all do the same under these circumstances, o.k., most of you.

The other saying that Ed and I just love is the infamous "but you look so good"... I noted this way back in May of 2010 - yeah, he looks good on the outside, but his insides are reeking havoc on him. You all saw him on Sat. night jumping around on stage like the rock-star he is... what you don't see is the price he pays later that night and the entire next day. When he cannot walk for more than 5 minutes without being in huge amounts of pain. He does paint a pretty picture for his adoring fans and for that, I am more proud of him than he will ever know. He doesn't complain, he doesn't get angry, he never says bad things, his faith is as strong as ever - he is an outstanding human. I will be lost for a long time, possibly forever, without him.

I think he is going to take a short break from The Band, but I have a feeling it won't last long, after all, his guitar is something that helps him cope and writing music is his gift. And, although I am not a huge fan of hard rock, I have learned to appreciate his talent immensely. So, look for a Newport & Ed Fair well Show x4 sometime in the summer, if I know him!

Now, since he has decided to take a break from the fun that is Chemotherapy, he started his own Hydrogen Peroxide therapy. I am very unsure about this, but hey, it's his body and his choice ultimately. It is a food-grade HP, not like what you buy in the drug store. He puts a few drops in an 8 oz. glass of water and down the hatch it goes. This is supposed to add more oxygen to his body, and as most of us know, cancer cannot thrive in an oxygenated environment. So, we will see if this does anything sometime in April when he goes for his next CT scans. I think he's a little nutty, but that is kinda why I love him so much, he is a little nutty.

And, yesterday, when I got home from work he left me a little vase with flowers in my bedroom with a card that read... "Just Because I Love You"... And that, my friends, is what makes him so special. No reason, just because he loves me.

Don't forget - Purple Stride Cleveland - June 18, 2011 at the Cleveland MetroParks Zoo. Join our team, we need volunteers & walkers or, if you are able to, make a small donation to our team to help fight this living, breathing monster:

With Love to all,
Ed and MK

Sunday, February 13, 2011

XLV 45 Sunday 2 6 11

So, Sunday morning... Ed and I are too excited that we are going to the Super Bowl in just a few short hours. First, Coffee and a bagel down in the continental breakfast room.... Ugh, Steeler fans again. Anyway, we ignore them and have our little breakfast and head back up stairs to shower. Well, we should have showered first - No Hot Water, none, zip, zilch. We both had to take freezing cold showers, it stunk. We figure, every single person at the Ramada was getting ready at exactly the same time for exactly the same reason. Brrrrr.

Anyway, Dick B. picked us up, took a couple photo's in our Dream Foundation T-shirts, then we changed into our game gear and hit the road. I'm glad we were on the road by 11:45 a.m. - No Traffic. We parked in the Six Flags parking lot and were really close to Rangers Stadium - it's a pretty cool set up, you have Six Flags - parking - The Rangers baseball Stadium - a few random roads - Cowboy Stadium; it's very cool how all three are right in a row. So, we hop on one of the many school buses to take us over the the stadium - we probably could have walked, but didn't want to risk Ed not being able to walk that far cause we were not really sure where we would have to go. Anyway, our bus got held up to let the Referee bus through with security - too funny. So, we exit the bus and start to walk to the section we need to enter. It was crazy. So much fencing was set up around the stadium you were in line, but no where near the building. It was cool. We stood there until 1:15 and they finally opened the gates and started moving toward the security check point. Since we were in line fairly early - we had no problems and were inside the perimeter within 10-15 minutes maybe. Mind you we stood without moving prior to that for maybe 45, but compared to some of the horror stories we heard later in the day, we had it good!

So you enter the inside of the fenced area and it's just too cool to take in. This stadium is mammoth. All these outside table and chairs were set up so you could have some drinks, eat some pizza and listen to some music before entering the ginormous venue that is Cowboy stadium - O M G... Huge. We did make the mistake of not buying our shirts prior to entering the building, but what did we know?! We never did this before. We go into the stadium and proceed to go up 4 or 5 sets of escalators. We were up there! So, we walked around and then went to check out our seats - crazy man. The big screen over the field was un-be-liev-a-ble. HUGE. 70 yards long - almost the length of the field. And, surprisingly, crystal clear. So Cool. Ed and I decided to check out shirts, I mean, we had several hours before game time, however, the lines at the indoor stores were crazy. We decide, being the brainiacks we are, to go back outside. Not smart. First, none of the escalators are running down because there are 103,000 people trying to go up to their seats. We find an elevator and head back down. Well, the crowd outside the stadium is now much, much larger than the previous hour we were down there. We tried to stand in line for shirts but it was complete insanity. No lines were organized and we stood in a pushing and shoving match for 25 minutes but never moved forward. After again being harassed by Steeler fans for what we were wearing, we just got out of line. I needed a smoke! Ugh, it was crazy - so we decide to head back up again and wouldn't you know it, we run smack into the Super Bowl 5 - you know, the 5 old dudes that have been to every Super Bowl - they were surrounded by quite a few people, but it was really neat to see them walking through! They had on matching coats and one was in a wheel-chair, but they were there! Soooo Neat!

Well, we get a few pricey cocktails and head to our seats to just watch the pre-game activity on the big screen. Time went amazingly fast. Next thing you know, the players are warming up on the field - the coin toss comes - and the game begins. Well, you all know how the actual game went so no news there. Ed went shopping during the first quarter once most fans were in their seats, so we did get our shirts and what not.

Half-time; Sorry to tell you all in TV land, but live, the show was AWESOME. Sound was great - all the people on the field were incredible to watch. Again, just surreal. So Much Fun. We did miss the end of half time because we were pulled out of our seats by Marty Hendricks, a reporter from the Milwaukee Sentinel Journal. Unfortunately, you cannot read the article unless you subscribe, so I had to get a one month subscription so I could see our article on line - too funny.

After the game, it was amazing how quickly the black/yellow left the building... The majority of Steeler fans did not stay for the ceremonies... Really... You spend all that money and you leave before it is all over. Come On. Whatever... Poor Sports is what I say... I mean, your team was there - isn't that enough. Guess not. I was so cool to watch all the post-game celebrations. All the glitz and glamor that is the Super Bowl.

Leaving the stadium was quite a different experience than entering. See, everyone came at different times during the morning and mid-afternoon; however, leaving was done pretty much at the same time. We couldn't find a bus to take us back to our parking lot so we had to walk. Not too bad, a slight freezing drizzle was coming down and we just took our time. Ed had to stop and stretch every once in a while to get the pain out of his leg and back, but he was on an adrenaline high so that helped. When we finally got to the car, we were tired, damp and just still in awe of the entire experience.

Dick dropped us off at the hotel around 10:30 p.m. I guess (remember, we were 1 hour behind our own time zone)... Ed and I went upstairs and went potty, then we walked across the street to Denny's (the only thing in walking distance from our hotel) had some hot food and we were in bed before midnight!

We were tired and achy on Monday, but figured since the weather had cleared up nicely, getting home would be a piece of cake..... Bwwaahhaahhaahhhaa.... Our flight from Dallas to Houston was delayed by 10 minutes, so when we hit Houston we ran through the airport to catch our 2:35 flight to Cleveland. We got to the gate at 2:36 - plane still there, but door's shut - No Can Do, we cannot let you on. Needless to say, we sat in Houston until 6:55 p.m. when the next available flight to Cleveland would be leaving that had seats. So, we shopped in the Houston Airport, we ate and we drank! By the time we boarded that 7 p.m. flight, we were toast.

So, we can relax and sleep on the way home, right, NOPE... 4 year old boy behind me kicked my seat and coughed the entire trip. I am not exaggerating, ask Ed, this kid hacked the entire 3 1/2 hr. flight. Neither Ed or myself went into work on Tuesday like originally planned, we were exhausted from this crazy three day trip and we both slept until 11 a.m. on Tuesday.

Now, we are back in reality mode and we even watched the game over on DVR so we could see the commercials we missed and to see how bad half-time came across on TV. You all were right, it did not come over well for the television audience. That's a shame, cause like I said, LIVE - it was great!

By the way - Ed's CT Scans showed no changes in his tumor, no growth, no shrinkage - just the same. So, not bad news, not great news, but definitely good news. Ed is more determined now than ever to prove the doctors wrong and make it to Super Bowl XLVI in Indianapolis next year. Hey, at least we could drive and make better time.

So, thanks for all the love and support leading up to and during our trip! You all made it possible.... Dream Foundation, family, friends, The Cleveland Browns.... It will never be forgotten!

Peace...... MK & Ed

Thursday, February 10, 2011

Ohio PurpleStride Cleveland 2011

Ohio - PurpleStride Cleveland 2011 - Home

Join Ed's All Star Dream Team, in person or in spirit with a small donation (just click the link above in blue):
June 18, 2011 at the Cleveland Metro Parks Zoo... We all know the elephants have come home and I, for one, cannot wait to visit them!

With love to you all... Ed and MK

Wednesday, February 9, 2011

Super Bowl XLV Frid and Sat

Well, What is there to say, except... AWE - SOME... A surreal trip and adventure of a life time. Who knew that Dallas and Houston would get hit with snow and throw our plans into a slight snafoo... Needless to say, I was incredibly crushed on Thursday when all flights to Houston were cancelled and there were no other flights to Dallas. Thus, Thursday night was spent at home. I cried... I know, those of you who know me are just SHOCKED - MK, Cry - No... Yes, we all know that I am a HUGE cry-baby and have always been one. I was so incredibly sad that our adventure had to wait a day... But... It began on Friday morning:

We got to the Airport around 9:40 a.m. and were able to relax, the CLE is quiet on a Friday morning (well, the CLE is pretty quiet all the time). We had coffee and then ran into our friend Susan F. who was on her way to Florida... Nice little chat. Once we settled into our seats amid all the Packer & Steeler fans, we received a phone call from Tom at the Plain Dealer and we did our phone interview. What a great guy! What a fun interview. ( ) Then, we were ready to board our plane, with 50% Packer Fans (o.k., including us, 51%) and 49% Steeler Fans... They boarded the plan as follows, first class & Elite One Pass members, then the guy at the counter asked for all Packer Fans next - TOO FUNNY... Hmmm, why are the folks in black & yellow not laughing. No sense of humor those Steeler fans. I guess when you have a quarterback like Ben, there's not much to laugh about is there!? So, up up and away we went.

Now - landing in Dallas a whole 'nother story... What A Zoo. As we were landing we could see cars that had skid off the highway covered in snow - O M G... Did we just fly north by mistake. It was a sight to behold. Next, we go and get our luggage, try to figure out the massive airport and find our way to the rental car shuttle. We Squeeze into the rental car shuttle, and I do mean squeeze, it was crazy. Then, as all the other folks went to their big-name rental car agencies with fairly long lines, we went to Advantage Rental... No one there but us! We had our car and our GPS in a spiffy little minute. Nice car too, a Nisan Ultima (sp?), it was a very nice ride!

We headed off to our hotel which was just minutes from the airport, but due to the ice and snow on the road took a bit longer. Man, it was crazy driving, mounds of sand followed by big patches of black ice... At least everyone was going really slow so we didn't look foolish by not knowing where we were going! We cleaned up and then we hit the snow/ice covered roads again to head to Krissy & Raul's house for an authentic Texan Brisket dinner and some much needed cocktails... It was a blast... Thanks guys for the hospitality - we had so much fun. We hit the road again back to our hotel about 10:30 p.m. cause we were bushed.

Sat. a.m., we got up and had a little coffee and continental breakfast surrounded by, again, a nice 50-50 split of Packer/Steeler fans... Let's just say the Steeler Fans were none to impressed by my Cleveland Browns t-shirt, and by george, they had snotty comments to sling our way - Too Funny. We just smiled politely and said, hey, we support our team just like you do! Now, the Packer fans - not knowing which team we were supporting just thought it was cool that we were showing our colors and love of our team! The folks from Wisconsin, my kinda people! We were met in the lobby later that morning around 11:30 by Dick and Sally, Dick is a Board Member of the Dream Foundation. These two people are by far some of the nicest people we have ever met. They took us out for a nice lunch and we just had a fabulous time. We talked about everything under the sun... Kids, Grand kids, Haircuts, Football, and really funky Texas weather!

After lunch, Ed and I hit the road to check out the drive that we would be taking once the sun went down... We wanted to scope out our drive early. It was easy as apple pie... and it was a sunny, but chilly, afternoon. Most of the snow/ice mix on the highway was melting and drying up which was really nice! We headed back to our hotel to take a rest before getting ready for Jim McMahon's fund-raiser Super Bowl party. While we were resting, we did another phone interview with a reporter from the Milwaukee Sentinel (I think - sorry Marty)... Marty Hendricks was too sweet. He would also find us on Sunday to talk to us some more during half-time!

On to the McMahon Bash!!! O.K., This was so much fun I tell you... ( We were a little early so we were standing in front of the Theater when Jim, his lovely wife Laurie, and another couple arrived. We watched them exit their very nice ride and have some pictures taken. We talked with a few autograph seekers prior to Mr. McMahon's arrival and they were pretty excited when he arrived as well. A couple minutes later, they opened the door for the VIP ticket holders (that was us - yeah)... and we went in. What a beautiful old theater. Reminded me of our theater's but smaller in scale, the architecture was beautiful. We were milling around and looking at the silent auction items which we unfortunately couldn't afford to bid on. Some were pretty cool! I noticed the one lovely lady that had arrived with the McMahon's standing pretty close to Ed and I so I decided to go introduce myself and Ed and ask her to let Mr. McMahon know that we were very excited that we could afford tickets to his fund-raiser/party and how much were were looking forward to the evening. I explained to my new friend Jennifer about Ed's condition and how we made it to town for the Super Bowl (i.e.; Well, she immediately whisked us off to meet her husband Phil and the next thing you know, Ed is meeting Jim McMahon himself, his lovely wife Laurie and Phil is having Jim sign an NFL football for Ed.... SURREAL folks. It all happened so fast, I didn't even get a picture. Let me tell you though, Mr. McMahon whispered something in Ed's ear that just had him cracking up in agreement. Let's just say it was a colorful remark about a past Browns Coach that NONE OF US MISS! Ed was like a little boy in all his glory that night. We had so much fun. Turns out Jennifer and Phil Lopez are from Macedonia Ohio - What Are The Odds! Again, the trend of just meeting more nice people continued... They wanted us to join them at their after-hour party which started at midnight, but we decided that with the big game coming up so quickly the next day, that we were headed off to bed! We got to the hotel about midnight and hit the hay! It was an incredible evening, with incredible entertainment and incredible people! By the way, Phil and Jennifer Lopez also host a fund raising event in the Cleveland area for Akron Children's Hospital
( - The LOPen is the brainchild of Phil Lopez and Brad Croce. These great guys were looking for a way to give back to the community. They figured the best way to do so would be to hold an event that everyone would enjoy and raise funds for a cause everyone would get behind. So, they got some friends together to play some golf and raise some money. They decided upon Akron Children's Hospital as their cause, and specifically the Showers Family Center for Childhood Cancer and Blood Disorders. To date, the annual LOPen events have raised over $250,000 for the Center. In 2011, the bar is being raised. The goal is to do a single-season donation topping $100,000 to the Hospital. With support of friends, family, the community and our generous sponsors, we are confident that we will meet our target.)

I feel blessed to have met Phil and Jennifer Lopez and Jim and Laurie McMahon... However long Ed is with us, this memory will be our special memory, just for the two of us, and when he is not with me, I will always have that very special night. XO It was a GIFT! There were no reporters and no phone calls from anyone that night - just Me and Ed and the party we were at with incredibly nice people!

Now - The other spectacular gift was the actual day long event that IS THE SUPER BOWL... Unfortunately, I am truly exhausted and will try to get to those crazy events tomorrow! Luv to you all! We continue to encourage each of you to check out - you may want to help and this may be the organization you would like to support! I know that now, our favorite organization list has grown by two more after Super Bowl XLV.... :)

Peace everyone - MK & Ed (oh, Ed would kill me if I didn't plug his band's upcoming gig on Sat. Feb. 19th at the Winchester in Lakewood, OH - 8:30 p.m., 'cause we start early - we're old... You guys all know the drill, loud bad rock-n-roll with free pizza in the rear... Newport will have 4 new original songs to share, don't miss out! Oh, and Newport will also be featured on an internet radio show on Tuesday evening (2/15) starting at 7:30... check out to hear my sweet Edwards voice along with the rest of the band - Thanks Stephanie M. & John - my cleveland pancan pals!)