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

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.

http://www.monsoonlagoonwaterpark.com/ - 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

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 (thewilds.org); 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

PurpleStride 2011 - Huge Success

http://www2.snapfish.com/snapfish/mmsplay/slideShowOid=1508801009/ownerid=29790806/controllerType=mms/preview=true/

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.

Pancan.org - 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.

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:  http://www.facebook.com/#!/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:  http://www.monsoonlagoonwaterpark.com/   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 :)

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" (http://lopengolf.com/), 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

No More Chemo for now

Well, Folks, I hate to write this, but the Xeloda didn't work for Ed.  He was supposed to take the medication for 14 days, he lasted only 5.  It made him very sick and he lost about 10 lbs. in those 5 days.  This was most probably the last chemo he will try and my heart is completely broken for him and the rest of us who love him so much.

He also has a "sizable" blood clot in his right calf now as well as the very large one in his left leg.  He remains in a great deal of pain on any given day and it is just unbelievable that our medical community has not figured this stuff out yet.  But if they figure it out, the big Pharmaceutical Co's & the Gov't. will lose too much money, because after all, it really is all about the money, no?!  Anyway, I'm a bit bitter this week, can you tell.  Ed had his blood thinner med changed to Arixtra in the hopes of helping with the clots.  I guess all that is left to do is pray, which quite frankly, I'm having personal issues with.

Sandy H.'s hot dog sale on Sat. was quite the success.  Sandy and the kids raised $513 for Ed's All Star Dream Team for PurpleStride Cleveland!  We are touched by their hard work and dedication to this important cause.  Go Team Ed!

We are supposed to depart on our cruise this Sunday, but depending on what the Oncologist says on Thursday, we may still cancel as we don't know if he will get a green light to fly?!  I did finally get Ed to start wearing the circulation stockings, but um, it's a bit late now.  I did nag him relentlessly about wearing them for the past several months, but, well, he's a man.  Hopefully they will help a little with reducing the swelling and cutting some of the pain in his calf.

And, I want to shout out to our PurpleStride team....  We are 29 members strong right now and still growing!  We may have the biggest team ever.  So thank you everyone for your support, it means a great deal to Ed and myself.

One last thing, we went back to the B-Spot in Strongsville and I DID get the Vanilla Apple-Pie Bacon Shake, Chef Symon you are a genius.  Ed wouldn't taste the shake, but he did have the fabulous Root Beer Float...  I had, I think, the Lola Burger which has the Egg on it - O M G, heaven on a bun baby!  The chips were awesome, but I don't do strong cheeses, so the dip wasn't for me.  Way to much food for the two of us!  But, it was a nice way to end what was otherwise a sad week.  I highly recommend that everyone go in on a Friday afternoon about 2:30 p.m., you can waltz right in, get a table, enjoy some awesome service and have the best burger on the West Side!

Take Care Everyone....  Hopefully the weather will continue on this new pattern of sunny days for a while!

Peace, Ed and MK

New Chemo To Start This Week

Usual disclaimer - no spell check - Ugh!

On Tuesd., 4/19 Ed had a CT Scan on his entire mid-section; on Thursday 4/21 (our 5 yr. anniversary by the way) we met with the Oncologist for the results. It is quite funny how Ed and I hear the same words come out of the Doctor's mouth, but do not hear the same "meaning"; So folks, what you have all been waiting for... Ed's Pancreatic tumor has remained the same size, no change there, which the Doc felt was positive; there are new lesions on his lungs (I think he said about 4), small, but there none-the-less; there is one 1/2" lesion on his spleen; and there are "several" new small bone lesions - what the word "several" means, well, your guess is as good as mine. His liver is still clean, which is awesome, seeing that his liver is processing the gagillion medications he has to take & will be processing the new chemo med. Ed heard all this and thought it was pretty good news, I heard all this and was fairly devastated. We forgot to ask if the scans identified if his bone fracture had healed at all... Ed is meeting with a Pain Management specialist today (4/26) and he should find out what happened with the fracture. The bone cancer pain is just incredibly debilitating and we are hoping that the pain doc can find a way to decrease that pain without upping the already crazy amount of pain-med's he takes.

Also, either today or tomorrow, he will being a new chemo pill called Xeloda (capecitabine: http://www.xeloda.com/xeloda-side-effects.aspx)
This is a two-week on, one week off treatment. He will take it in the morning and in the evening. We had received a message from a woman who's husband has had great success on this medication (22 months & still going) and we are desperately hoping/praying Ed can tolerate this medication and it will give us some more time. One never knows, if he hangs in there long enough, maybe another medical-break-through could happen and he could stay with us a bit longer than what the doctor had originally guess-timated. Seeing that in November he was given 6-9 months, and we are sitting at that 6 month mark RIGHT now - I am not ready to give up and neither is Ed.

His fishing trip really took a toll on him; he came back completely exhausted with two very swollen calves/feet - he was rockin' the c'ankles. Well, he rested all last week with his feet up and he is pretty much back to his old self. We had a lovely & relaxing Easter weekend. Drinks outside on Sat. night with the Furda's & Cigas' - that was an unexpected, but completely fun night. Easter was very chill, Ed had a nice big Easter Brunch and then napped quite a bit, which was just what he needed.

We leave in 18 days for our cruise out of San Juan and we couldn't be more excited! It will be 8 days of relaxation - no pressure to do anything but sit on deck and relax... We are only planning on doing one shore excursion in Barbados - which is snorkeling with sea turtles; if Ed doesn't feel up to it, he can just sit on the sail-boat & chill; All Good. I need this break more than anything... So Excited!

Ed continues to play with Newport on Tuesday evenings and they are working on recording so I am anticipating a full CD sometime soon - I am fairly excited to hear the finished product!

Thank you for continuing to keep us in your prayers - it is much appreciated.

Peace - Mk & Ed xo

Ohio - PurpleStride Cleveland 2011 - Home

HEY PEEPS.... If you are planning on joining us for Purple Stride on June 18th you must register on-line ASAP... Everyone needs to be registered, even the kids! Ages 3 & up all need to be registered & get a Zoo ticket for admission to the event which includes the entire day at the Zoo after the walk/run. Don't Wait! Registration on day of event goes up by $10 and you won't be guaranteed your awesome t-shirt!


Ohio - PurpleStride Cleveland 2011 - Home

Deagans in Lakewood - Awesome!

Here is the link: http://www.deagans.com/

Well, seeing that after I blogged about the B-Spot in Strongsville, and that post has already had 71 page views, I thought, hmmmmm, I might as well do another little plug.

Last Thursday, Ed and I attended a fund-raiser for our upcoming Purple Stride Event at Deagans in Lakewood - What a grand experience. They have a small back room and we had it filled to the gill! Thank You Kelly for putting on this oustanding event. She had great prizes and the people there couldn't have been more supportive.

But, let me tell you, the food that was served and the fun beer tasting made the event even more special. The owner seemed quite young (but then again, as I get older, everyone else seems younger) and he was a very gracious host. We were able to taste 4 different beers, of course, I don't remember the names of them. One sounded something like "heffa-vice-a", yeah, I know that is not even close to how it is spelled. I liked that one very much and as most of you know, I don't veer to far from my Miller Lite! The other beer I truly enjoyed was a Milk-Stout something - again, I don't remember, I'm old. But I tell, ya, I will be ordering one of those at the B-Spot next time I'm there cause I hear they have it also. It doesn't have carbination and it's a strange sensation. The food served that night was really great as well. There was a fig wrapped in bacon thingy, I'll eat anything if bacon is involved, it was quite good. Ed really enjoyed the wings and of course the cheese platter with some yummy meats was awesome.

Just thought I'd give them a plug seeing as they had to put up with us that night and it was truly a great evening!

So thanks Deagans! Maybe this will get you a few more visitors.

Oh, and Ed is having an alright time in the Key's this week. He has had some major pain flair ups, again reaching as high as a 10 on the pain scale. He was on a fishing charter yesterday with the guys and he got sea-sick. He wound up taking a 5 hour nap on the boat - that was one expensive nap. He said it was the best sleep he has had in over 3 months and he would gladly pay again for a nap like that - ha. They did catch two fish they were able to have for dinner last night. Today he and Michael are on a smaller boat doing some more fishing, hopefully he will actually be able to cast a line today! Oh, and they gave Rob a mohawk, yeah, these are 48 year old men, too funny! He misses me and the kids very much and leaves me the most awesome messages. I told him 7 nights was too many, but does he listen to me, nooooooo. :)~

When he gets back, I'm making him take me back to the Bspot for one of those vanilla-apple-pie-bacon shakes. I am dying to try that thing! OH,and one of those milk-beers, Ha.

Peace all - MK

B-Spot Strongsville - Awesome!

Usual Disclaimer - no spell check, expect errors & type-o's folks:

Oh, what a lovely day for a burger man. Yes, I know it's Lent; Yes, I know we should not have been eating meat today; Yes, I know most of you don't give a crap. But what a great lunch. I had the pink-squirrel, which was fab - u - lous, the Lola fries and the Brueben burger - best burger I have had since back in the day's of stopping at Whitey's on the way to Blossom - circa mid '80's! Ed had the simple salad, which he enjoyed very much, currently his taste-buds are all into lettuce. He also ordered a Brat, but it wasn't agreeing with him. No prob's there - brought home the leftovers and Paige had them gone within 15 min's of getting off the bus. I am too stoked to have a Michael Symon joint in our neighborhood. I love, love Lolita, have planned two business dinners there over the years for work in the private room and they were both just awesome! So Hooray Chef Symon and welcome to the 'ville!

I have been so excited about the Bspot opening in Strongsville that I knew I wanted to try it immediately! So, seeing that it has been open all of 3 days, I think we did pretty well on getting there. We tried to plan it so our wait would be minimal, I took 1/2 day off from work so Ed and I could have a neat lunch experience. And, neat it was! Our server was just a super, sweet bubbly blonde - she must have thought I was crazy, I was so giddy when I ordered!

Ed leaves all of us behind in chilly C-town tomorrow to go to the FL, Keys for 7 glorious days of sun with 7 of his boys. Needless to say, I am not thrilled about this little adventure. I worry endlessly about him when I am not around him, I know he will be fine, but my worry-gene is in super-high gear right now. On the bright-side, he did see his Oncologist yesterday and they were impressed with how well he is maintaining his weight and that he still, *wait for it* "looks so good". We all know how much I love it when people say that. He will get a CT when he returns from FL, then will reconsider starting another round of Chemo. He got a new prescrption for a higher does pain killer, hoping this works better than the last one. It will be difficult for him to sit through his upcoming flights if it doesn't work well. Rob and Cigar, you are the two I trust the most to be his "Mom", make sure he rests and remind him to take his Creon when he eats! Love you boys much, I know Ed is really excited to hit the road tomorrow. You know you love someone when you are willing to take them to the airport at 4:30 a.m.! And love that boy I do.

So, again, not much on the disease today, as things have not changed much recently - the pain is horrific, some points being as high as a 10 - the sleep doesn't come, and when it does, his phone will always ring - he eats as much as he can, when he can - and he remains fairly positive these days even though I know he is exhausted. Our hope with the new pain meds is for him to get some much needed & solid sleep. I know the Vitamin D from the warm FL sun will be great therapy for him as well.

Oh, and Ed's All Star Dream Team has raised $1200 already for our Purple Stride event at the Cleveland Zoo on June 18th! The link to our team is at the top of the page to the right of the posts - join us if you can!

With Love & Blessings - Ed and MK

Team Ed fundraiser POST PONED

From Sandy H., who is on Ed's Team from the Purple Stride event at the Cleveland Zoo on 6/18/2011... If you are in the area, stop by for some lunch or a snack!

FUND RAISER DATES ARE NOW: SAT. APRIL 30, 2011 AND SAT. MAY 7, 2011

Got my temporary food handlers license application for our Team Ed fundraiser!!! Hot dogs, chips and fresh squeezed lemonade in front of the WalMart on Ridgewood Drive in Parma

My Passion

So, no spell check still, so be prepared for many, many spelling errors and type-o's. It's late.

I have been alone tonight. Paige is on Spring Break and is making life much more difficult than it needs to be. Yes, I love her, but man, girl, get it together. She is at a friends and needs to thank that Mom for watching out for her. She knows not how ugly this world is yet, she will learn and unfortunately, she will probably learn the hard way.

I watched "Dear John" tonight. Writing. It is so powerful. The movie was more than I expected, and made me cry A LOT.

As I watched this movie about a young woman who had only two loves in her life, I thought, man can I relate. If you are reading this and you know me, you know that I have had very few real relationships with men. The first, the "high school sweet-heart", but oh, not so sweet. I spent 13 years with a person who manipulated me and treated me with much disrespect. But love is blind, and I needed a seeing-eye dog. From the time I was 13 till I was 26 yrs. old, I believed that he was the one, he was who I should be with, he was the one who would always own a piece of my heart and soul. Not true. Not-so-fast-forward to today, 48 years old, and in love with who is truly the only man I have known true love with. Did I have others in between, I did, but very, very few (you can count on one hand, and not include the thumb). I am as loyal as they come, when I give myself away, I give all that I have. Ed will always be the only person on this earth that knows me inside and out. Good, bad, ugly, moody, happy, loud, crabby, excited, touchy, sensative, angry, elated.... And, he accepted me in all those ways, no questions asked. We love each other in a way that is deep and special, it will never be matched again. Do I hope that when he leaves us that eventually I can move on, I do, I truly don't want to grow old alone. Will there be anyone as special as him again, never. He is an extra-ordinary human and I know in my heart I should be thankful for the time we had and the time we still have together. And I am, but I am also angry and confused and sad. Why cann't someone fix this man I love so much, why can we send men into space and build nuclear reactors and have internet and have everything we have, but no one can fix him. Someone needs to fix him. Someone needs to take away his pain. Someone needs to know that life will be awful for so many of us when he leaves. Someone needs to reassure me that there is life after death so I know that I can have him again. There is no one that can do that. There is no one that can fix him. There is no one that will ever take his place on this planet. There is only a small amount of hope right now and every day I search for someone or something to give us more hope. I am failing.

When he is gone, and all that is left are our memories, I hope it is enough to get me through what will surely be hell on earth. I watch this man suffer and I hear the pain in his voice when we cannot be together and my heart aches in ways I didn't think was possible. Thank goodness for the new people in our lives, the people from the Pancreatic Cancer Action Network, they are living this nightmare with us, they will be the people that will get me through, they will give me a reason to fight his fight and move forward, they will be the people that help find the cure, they will be an important part of my future.

Then there is family, my family is too incredible for words. My family loves this man like he has been in our family since he was a little boy. The support and love they show him is unmatched. I received a text tonight from my cousin in Atlanta letting me know his plane reservation has been made so he can be at the Cleveland Purple Stride event on June 18th at the Zoo. Then, he proceeded to let me know that my other cousin will also be there, she lives in Charlotte, NC...... There are no words. They are my heart. This is how I know, there must be a God. This is how I know, I should still pray. This is how I know that love and family are truly all that matters on this earth.

Edward James you own my heart and soul and I will never, ever give up on your fight as long as there is a breath in me. You brought me back to life, you gave me more joy and happiness in the past five years than I thought was possible. You, my sweet man, are a gift to this planet and when you are gone, the world will not be nearly as nice of a place to live. So stay please. Fight please. Call another doctor please. I need you, as do so many other female humans on this planet. You are plagued by the female of our species, we have consumed your life, we need you. You complete us! Funny, right.

Plus, you get to go fishing in two weeks....... Ugh.

I love you with all my heart and soul, and as we used to say way back when this started....... ILYSMEJD...... me xoxo

One Year Ago Today This Nightmare Began

3/19/2010

One year ago today, Ed drove himself to the ER at SouthWest due to the blinding pain in his middle back. The pain was so intense he couldn't even see straight. And so the nightmare began. Three day's in the hospital on a clear liquid diet so the pancreas could calm down - he was diagnosed with acute (well, not so cute really) pancreatitis. He was miserable, but, hope was presented as the physicians insisted that the small mass on his pancreas was "most probably" a cyst, not a tumor. Yeah, go ahead and make the Arnold jokes, "it's not a tumor"... But in fact it was, and it was a mean one.

3/19 - Ed is admitted to SW for 3 days with acute pancreatitis. Gastroenterologist (GI) asks Ed on Sat. 3/20 what Ed's personal internist thought about the mass on his pancreas? Back in Aug. of 2009, Ed had passed a Kidney Stone and the mass was identified on the scan? Um, Ed and I just kinda looked at each other and were like "What The........." His internist never disclosed that information to Ed. So, what could have been caught in a much, much earlier stage of cancer was not. I truly hold that man responsible for giving Ed his poor outcome by not telling him about the "mass". His reponse to Ed when Ed called him from the hospital, He didn't think it was anything to worry about. I AM HERE TO TELL YOU - ANYTHING ON YOUR PANCREAS IS SOMETHING TO WORRY ABOUT! If you have a doctor tell you this, get another doctor - go to a GI guy or specialist, but fight for yourself, be your own advocate!

3/30 - Ed has an ERCP (scope down his throat to look at the tumor (oh, my bad, they still were insisting it was a cyst)... No biopsy done, just watching it for now. Surgeon looks at results, does not like what he sees and tells Ed surgery is not an option yet.

4/27 - Yes, an entire month later, ERCP #2 - this time they take fluid out of the tumor, report comes back with high levels of pre-cancerous cells in the fluid. This is really bad news.

5/14 - 2 weeks later, ERCP #3 - solid material is removed from the tumor, they test it right then and there, they do it I believe three times to be sure - I am the last person in the Lakewood Hospital atrium and it is scary as crap. Dr. comes out to tell me Ed's tumor cell marker (CA19-9) is the highest he has seen at 25,548. He has stage III pancreatic cancer that is border-line resectable (cannot have surgery) because it is attached to his 3 main arteries/veins (portal vein, superior mesenteric and celiac trunk).

On June 3, 2010 Ed started his chemo - And, since then, you guys know the rest of the story.

So, we bowl tonight for the last time this winter, which means spring is here - well, we can hope anyway!

Peace Ed & MK
PS - I don't have spell check anymore on my blog? So, it will not be as awesome as it used to be, I usually don't catch my own type-o's and I am a terrible speller.

One More Day Till The Big 48

Hi Everyone - Happy St. Patty's Day Week!

Well, It wouldn't be Ed's Birthday week without the Dickey's Annual St. Patty's day party under our belt. And, well, that it is. It was, as always, just a great party. The corned beef was awesome, the beer was cold, the Lemonaide/Vodka punch was delicious, and the great friends in attendance just made it such a fun night. It helped that Ed and I won on the side board with the number 48 - every year I buy the number that matches Ed's age he will be turning the week after the party. This is the second time in five years that we have won on that number. Thank You Side Board for paying our cab ride home. And, boy, I needed that cab ride this year. Thank you Mr. Yaegermeister (sp?)! I am traditionally not a "shot" gal, but for whatever reason, i.e. Darlene, Janet, Barb, Mel, MaryAnn, Sandi, Darcy, Lisa, Paula, JoAnn, another Jant, Melissa G..... the mood was just right! Secretly, I am glad I don't do that very often.... But, the evening was so reminicent of when we were in our twenties and didn't have a care in the world. I am blessed with the most awesome girl-friends ever. What would I do without you ladies! We may not see each other as often as we would like, but when we do - It Is Always A Party, and for that I am very grateful!

Speaking of girl-friends, I found out my very, very dear friend J had a heart-attack on Feb. 1 and she didn't want me to know because I have so many other things that I am worried about right now. I just found this out on Friday - March 11 - 1 month & 10 days later - UGH! If any one of my friends is ever sick or hurt - somebody better let me know. I love you Jay and even though praying is something I am very conflicted about right now, know you are in my thoughts continuously!

So, Edward turns 48 tomorrow! I hope my sweet man has a glorious Birthday! I love him more every day, and every day he continues to astonish me with that positive attitude. His pain levels remain quite high and it is difficult to witness. I am truly mortified that the medical community doesn't have a better solution for this. So frustrating. Ed has discontinued the Hydrogen Peroxide therapy, it made him pretty sick after a week of trying it, and he just cannot stomach the smell or taste of HP now. :( So, we are kinda back to square one. It breaks my heart, but it is always his decision / his body. He may consider trying the chemo pill later in April, after his fishing trip with his Boys to Key West... We can only hope that the pill will cause him less side effects than everything else he has tried so far. He is the Side Effect King - if there is a "possible" side effect to be had, he seems to get it.

Needless to say, I was none to pleased with his fishing trip, originally, that is. I mean, 7 days in the Key's with the Boys, come on... We have never gone away for more than 3 nights at a time, even the Super Bowl was supposed to be 4 nights, but because of the snow, turned into 3 nights. Well, Ed redemmed himself, and we are going on a "P"honey Moon in May, for 8 nights.... So Yeah! I just pray that his health will hold out and we will actually be able to take the trip. We are realistic enough to know that travel insurance is a necessity at this time, but we remain optomistic that this trip will become a reality! So, 7 night cruise with a one night stay in SanJuan after.... St. Thomas, Barbados, St. Kitt's, St. Lucia and St. Maarten.... We have a balcony room on the Veranda deck, everyone say ooooohhhhh, I am just too excited. I figure, Ed can rest as much or as little as he needs, and me, I can sit on that balcony and read for 7 days and be perfectly content.... Ocean, Sun, Book - I Am Golden! Ed was worried he would be bored on a cruise, he's never been obviously, now, I have been on 9 (I think, it might be 10), if you are bored on a cruise - it is your own fault. You can do as much or as little as you want on any given day or night... It is all up to you. I just love St. Thomas and am thrilled to share that island with Ed; St. Maarten (I know I'm spelling that wrong) is just o.k., but I have never been to the other 3 ports and am very excited ;) In 4 Weeks Ed get's fishing & the Boys, in 8 Weeks Ed get's a Phoney Moon and the Southern Carribean.... Then, what he is probably looking forward to even more, the planning of Monsoon Lagoon Fest #3 (MLF#3)... And Ironically, as I was typing this, I get a call from Janet asking if we have our date picked out yet for MLF#3 'cause they do not want to miss it! Good Stuff!

So - not too much about the disease today as Ed continues with no treatments at this time. Obviously, the other things we were looking into, i.e. Rational Therapeutics, did not pan out. It is truly like the medical community really does just write you off when it's the pancreas. So incredibly heart-breaking.

We also have our Cleveland Purple Stride Event on June 18th at the Zoo to get ready for! Remember, you can join our team or make a small donation if you'd like; Research is sorely needed and this is the group that is making that a reality! Pancan.org -or-
http://pancan.kintera.org/faf/search/searchTeamPart.asp?ievent=451976&lis=1&kntae451976=9AE95F9D3E714790A737889E1AA49F3A&supId=0&team=4063791&cj=Y

Happy Spring Everyone.... Let's go warm weather, we are READY!

Peace - Ed and MK

Follow up story in The Post

Thanks for the follow up story Terry! Sorry I was unavailable, such is the life with a teenager who thinks all that matters is her social life! God Bless!

http://thepostnewspapers.com/results/Demyan-at-the-Super-Bowl-Strongsville-2-26--brlas-

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:
http://pancan.kintera.org/faf/donorReg/donorPledge.asp?ievent=451976&lis=0&kntae451976=F241E22D30D044C39232B52B002CEF84

With Love to all,
Ed and MK

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

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

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. ( http://blog.cleveland.com/metro/2011/02/terminally_ill_cleveland_brown.html ) 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... (http://www.swangwear.com/concert) 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. dreamfoundation.org); 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
(http://lopengolf.com/ - 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 pancan.org - 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 scrubradio.com to hear my sweet Edwards voice along with the rest of the band - Thanks Stephanie M. & John - my cleveland pancan pals!)

One Week And Counting

Well, here we are exactly one week away from a once-in-a-life-time-trip.... A Super Bowl... Never, ever, in a gazillion years could I imagine having to deal with a year like we have just experienced. Talk about your low-lows and your high-highs. I'm a little bit nauseated by it all, but still smile everyday knowing that Ed made my life complete. Whatever will I do without him. I cannot even being to imagine. But, I'll figure it out, I always do.

I'll tell what is truly bothersome, our gov't is so f-d up it's not even funny. Why is it that they get to determine what happens to your Social Security benefits when you die... Shouldn't you be able to determine how and where and how much money you want to go to whom, I mean, it's YOUR money, YOU worked YOUR whole life for it. It makes me angry that he cannot decide. Shouldn't it be HIS decision on this. Talk about the land of the free - Um, how is that, when you are not FREE to decide how you want your final financial wishes handled. I'm a bit disturbed by it all to tell ya the truth. It is what it is...... But it is wrong. And just to be clear, I don't want his money, I don't need it.... It should just be HIS decision!

Anyway - I have new tennis-shoes (to all my New England friends, that'd be sneakers), a new Browns hoodie, and nice new NFC Championship Green Bay T for our trip. Still need a new pair of dressy jeans and a blingy type shirt for the Jim McMahon Super Bowl bash on Sat. night - VIP tickets baby, VIP. We already have lunch and dinner plans for Friday - going to the JFK memorial/museum in Dallas also on Frid. afternoon.... Then dinner with Johnny Gremm's little sister, Krissy - I have never met her so I am really looking forward to having dinner with her and her family on Friday. Rest on Sat. afternoon, Jim McMahon party/country music concert on Sat. night - and then.......... SUPER BOWL 45....... Too exciting for words I must say. We are so looking forward to meeting Richard, he is a Dream Foundation Board Member and lives in Dallas. He and his wife will be taking us to lunch on Friday and then Richard will be attending the SB with us... How Cool Is That! Shout out to Dana, works for the Cleveland Browns & Johnny Gremm's cousin, she sent us 3 Cleveland Brown Lanyards for our SB Tickets so we can wear them around our necks and not loose them! Hooray.

I continue to be astonished by peoples generosity, the people all noted above, and the strangers who reach out to us - truly amazing. A friend of my parents called me out of the blue on Tuesday night after he saw our Fox 8 News story... He owns a limo company, offered to take Ed and I to the airport & pick us up, free of charge... Are you even kidding me, that just doesn't happen. I respectfully declined but was so touched by his generosity. My Mom is taking us to and picking us up from the CLE.... Hmmmm, after house sitting & Paige duty, maybe I should take the limo and cut my Mom a break?! I may reconsider that.

Ed should be getting a visit on Monday from a volunteer named Kelly who represents the Dream Foundation - she will have all of our documents, Dream Foundation T's, a disposable camera and some other goodies for our trip... Then I will know it's real. Ed rented our car for the weekend, you gotta love a man, he calls me and say's, and I quote, "Should I get the GPS"......... Hmmmmmmm, really. Um, neither one of us are even remotely familiar with Dallas, I'm thinking that was a no-brainer... You gotta love men. I guess getting a GPS is kinda like asking for directions, so since it was ME (the female) that said we should get the GPS, his man-card is all safe & sound.

O.K. Peeps, I'm out for now........ Ed had CT scans done this morning, have no idea when results will be back... As always, will keep you posted. We continue to work with Rational Therapeutics in Los Angeles regarding possible Tumor Cell Profiling... God willing that will happen. However, it seems that getting a viable piece of his tumor for testing may not be a possibility, time will tell.

Almost forgot...... Today is our un-official "5 year day".... 5 Years Ago today, Ed knocked on my door for our first reunion planning meeting for our 25th BHS Class Reunion... Thanks Ed for coming over, thanks for telling me I had great skin, thanks for becoming such an important part of my life.... ILYSM EJD. xo

Peace & Love....... MK & Ed

Fox 8 Story on Super Bowl

Click below to see & read our little story on our upcoming trip to Super Bowl 45! :)

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Fox 8 News clip

Hopefully this link will work better than the last one to The Post. Here is our little Super Bowl story that will be on Fox 8 News tonight:

http://www.fox8.com/videobeta/a73188f1-6584-4f9d-a911-5a00270fe589/News/Super-Bowl-Wish

Fox 8 News Interview

So, Annette Lawless, from Fox 8 News was here today and interviewed Ed and myself regarding our upcoming Super Bowl 45 trip.... We, of course, touched on pancan, education, the need for increased funding and research, knowing family history and how excited we are to go to Dallas next week.

Ed was his handsome and charming self. Annette was lovely and it was a pleasure to meet her.

On another note, I'm freezing... this cold weather needs to be done... I'm tired of having cold feet and a cold nose... sounds like I am a dog. Dogs, I miss my Oscar Meyer but I don't miss his accidents all over the house. It was nice to have him sleep on you when it was cold like this. I will probably get another dog someday, but it will be a rescue that is house trained.

Well, stay warm everyone... Ed and MK xo :)

The Post Article and Fox 8 News

O.K, the link to article seems to be broken... try this link and the story should come up:

http://thepostnewspapers.com/strongsville/

If the article shows a broken link, re-try the link below, it will come up as a broken link on a google page, click on the name of the article again, it should pop up in a search type listing and click on "cached" view to read... I don't know if that makes any sense, but good luck. Also - Fox 8 will be interviewing us today thanks to a great family friend who took our post article into his office this morning! I'm gonna make that boy a super-star yet! Woo Hoo... Next up will be 2/15 on scrubradio.com with Ed and the boys of Newport to promote their 2/19 show at The Winchester :) I guess all that is left is getting him into a Movie - :)

Thank You Terry... Great article! Enjoy everyone....

http://thepostnewspapers.com/strongsville/terminally-ill-man-going-to-Super-Bowl-Strongsville-1-23--brlas-