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
Join us as we Stride each year, hold a vigil to honor those we love and wage war on Pancreatic Cancer in the CLE! On Facebook, The Pancreatic Cancer Action Network Cleveland Affiliate & on Twitter, @pancancleveland - get involved! Be the Change! Wage Hope! www.purplestride.org/cleveland
Tuesday, February 22, 2011
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
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
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. ( 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!)
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!)
Thursday, January 27, 2011
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
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
Tuesday, January 25, 2011
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
http://www.fox8.com/videobeta/a73188f1-6584-4f9d-a911-5a00270fe589/News/Super-Bowl-Wish
Monday, January 24, 2011
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 :)
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 :)
Saturday, January 22, 2011
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-
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-
Saturday, January 15, 2011
Dallas, TX Here We Come
So, we found out yesterday, Frid. 1/14, that we are going to the Super Bowl courtesy of the Dream Foundation (DF) [dreamfoundation.org] and our fantabulous Cleveland Browns who donated 3 of their aloted SB tickets... 1 ticket for Ed, 1 for me, and 1 for either a DF employee or one of their major contributors. Either way, I say Fantastical! We are truly thrilled - this is such a once in a life-time opportunity for regular schmoe's like us! We will fly out of the CLE on Friday and be returning home on Monday - hopefully we will be able to really enjoy Dallas on Friday evening & all day on Saturday prior to the big game on Sunday. Needless to say, Ed is not a huge fan of Fergi and the Black-Eyed-Peas, but hey, it's the freakin' Super Bowl, I think we can handle having fun at half-time regardless of who is there! I'm so hoping to spot celebrities, maybe run into some CLE Brownies or other NFL players would be way COOL! If Peyton Manning or Peyton Hillis want to meet me, I'll be available, just sayin'! It's strange that two of my favorite players have the same, but so uncommon, name for a guy. Hm.
On another cool note, Ed and I had the pleasure of being interviewed last night by a reporter from The Post, Strongsville edition. Thanks Terry! Again, if we can raise awareness about this disease, then that is what we will continue to do. If anyone wants to talk to us - we are an open book! Pancan.org - check it out people. We need as many folks writing to our government officials to ensure funding for research and a cure for pancreatic cancer is found sooner than later - too many lives depend upon it. Again, when the survival rate has not increased in 40+ years, and we are still in single digit survival, there is a significant problem. With breast cancer at a 96% survivability rate, it just shows anything is possible... So many cancers are now considered curable - Ed's is not one of them. Pancreatic Cancer is almost always a death sentence... this needs to STOP.
Also this week, Ed and I had the pleasure of meeting the lovely people from the Pancreatic Cancer Action Network Cleveland Affiliate Group - what a great group of people. Look forward to getting more involved during the next few months! The Cleveland Purple Stride event for 2011 will be June 18 at the Cleveland Metro Parks Zoo - how awesome is that. Our Zoo rocks! I cannot wait to see our beloved Elephants again :) Yeah.
Ed opted out of treatment this week as the last one took such a toll on his body, he will get a CT scan in two weeks to find out what is going on and then we will decide about future treatment after that. Hopefully, we will get to Long Beach, CA sometime in late Feb. or early March and go to Rational Therapeutics for Tumor Cell Profiling to identify if there is a chemo that would work on Ed's cancer cells... Will keep you all posted, but we really won't know anything for several weeks.
Ed had a great week, did a lot of stuff around the house and is looking forward to the SB and his band's next gig: Sat. 2/19/11 at 8:30 p.m., The Winchester in Lakewood! Come join Ed and Newport, with new super-star drummer, the incredible, 14 yr. old Mr. Rex Larkman! All Ages Show - bring the Family! (Some of the song lyrics are a bit pg13)
Now - let's just hope that Pittsburgh & Baltimore are stopped in their tracks, I don't want either of them in that game in Dallas! Gosh I love football!
Peace....... MK & Ed
On another cool note, Ed and I had the pleasure of being interviewed last night by a reporter from The Post, Strongsville edition. Thanks Terry! Again, if we can raise awareness about this disease, then that is what we will continue to do. If anyone wants to talk to us - we are an open book! Pancan.org - check it out people. We need as many folks writing to our government officials to ensure funding for research and a cure for pancreatic cancer is found sooner than later - too many lives depend upon it. Again, when the survival rate has not increased in 40+ years, and we are still in single digit survival, there is a significant problem. With breast cancer at a 96% survivability rate, it just shows anything is possible... So many cancers are now considered curable - Ed's is not one of them. Pancreatic Cancer is almost always a death sentence... this needs to STOP.
Also this week, Ed and I had the pleasure of meeting the lovely people from the Pancreatic Cancer Action Network Cleveland Affiliate Group - what a great group of people. Look forward to getting more involved during the next few months! The Cleveland Purple Stride event for 2011 will be June 18 at the Cleveland Metro Parks Zoo - how awesome is that. Our Zoo rocks! I cannot wait to see our beloved Elephants again :) Yeah.
Ed opted out of treatment this week as the last one took such a toll on his body, he will get a CT scan in two weeks to find out what is going on and then we will decide about future treatment after that. Hopefully, we will get to Long Beach, CA sometime in late Feb. or early March and go to Rational Therapeutics for Tumor Cell Profiling to identify if there is a chemo that would work on Ed's cancer cells... Will keep you all posted, but we really won't know anything for several weeks.
Ed had a great week, did a lot of stuff around the house and is looking forward to the SB and his band's next gig: Sat. 2/19/11 at 8:30 p.m., The Winchester in Lakewood! Come join Ed and Newport, with new super-star drummer, the incredible, 14 yr. old Mr. Rex Larkman! All Ages Show - bring the Family! (Some of the song lyrics are a bit pg13)
Now - let's just hope that Pittsburgh & Baltimore are stopped in their tracks, I don't want either of them in that game in Dallas! Gosh I love football!
Peace....... MK & Ed
Friday, January 7, 2011
REALIZING HIS DREAM - Pittsburg, KS - Morning Sun
Read this story - it just goes to show that the Dream Foundation really does take ordinary people's dreams and make them a reality... Let's hope the same happens for Ed!
REALIZING HIS DREAM - Pittsburg, KS - Morning Sun
REALIZING HIS DREAM - Pittsburg, KS - Morning Sun
Saturday, January 1, 2011
1-1-11 cool
Just wanted to wish everyone a Happy New Year. I love the date today, it's cool.
Ed has had a horrific week, sick every day - this chemo kicked his non-existent butt. I don't think he will be able to handle this treatment for any length of time. It is hard to watch him suffer, I do not handle it very graciously, unfortunately. Again, I get more mad than anything. I want the medicine to work, but not if it's going to make him so sick - Ugh. We really need to get him to Cali for that testing -I know it's foolish to think he will get any better, but hope is all you have when you are in this situation. I think his boy's are going to plan another fundraiser so hopefully we can get to the testing pronto. He was too sick to do anything last night, but that was o.k., staying home on NYE is no biggy for me. I actually watched Eclipse and really enjoyed it, I love me some vampire/werewolf action. I even watched it a 2nd time, but fast forwarded through the boring parts so I could turn on Dick Clark exactly 3 minutes b4 midnight - then went to bed - Ha. Forgot to wave money at the moon at midnight though, awwwww, no prosperity this year, guess we are not winning the lotto, bummer.
Today I will be having pork at my Mom's - Yummy ;) My favorite meal of the year is pork & sauerkraut & dumplings... mmmmmmmmmm... then, the big day tomorrow, for me personally, the BROWNS -V- STEELERS GAME - Hooray... Hoping Ed feels better tomorrow! He had his injection for white blood cell production yesterday morning so hoping that it kicks in & he feels better for the game. I will be sporting my very large (2x was all they had left) Hillis Jersey... Yeah. Ed asked me yesterday, if we make it to the Super Bowl, you gonna wear your Hillis Jersey, Um, Duh... Hell ya! I can pretend there is Brown & Orange on the field, I have a great imagination. I at least hope one of my favorite teams makes it to the SB so I can actually cheer for a team I like. We will find out soon........ Yeah Football!
Have a nice weekend everybody.... Monday it's back to the same-old, same-old, so enjoy today & tomorrow as much as you can.
Cheers........ MK & Ed xo
Ed has had a horrific week, sick every day - this chemo kicked his non-existent butt. I don't think he will be able to handle this treatment for any length of time. It is hard to watch him suffer, I do not handle it very graciously, unfortunately. Again, I get more mad than anything. I want the medicine to work, but not if it's going to make him so sick - Ugh. We really need to get him to Cali for that testing -I know it's foolish to think he will get any better, but hope is all you have when you are in this situation. I think his boy's are going to plan another fundraiser so hopefully we can get to the testing pronto. He was too sick to do anything last night, but that was o.k., staying home on NYE is no biggy for me. I actually watched Eclipse and really enjoyed it, I love me some vampire/werewolf action. I even watched it a 2nd time, but fast forwarded through the boring parts so I could turn on Dick Clark exactly 3 minutes b4 midnight - then went to bed - Ha. Forgot to wave money at the moon at midnight though, awwwww, no prosperity this year, guess we are not winning the lotto, bummer.
Today I will be having pork at my Mom's - Yummy ;) My favorite meal of the year is pork & sauerkraut & dumplings... mmmmmmmmmm... then, the big day tomorrow, for me personally, the BROWNS -V- STEELERS GAME - Hooray... Hoping Ed feels better tomorrow! He had his injection for white blood cell production yesterday morning so hoping that it kicks in & he feels better for the game. I will be sporting my very large (2x was all they had left) Hillis Jersey... Yeah. Ed asked me yesterday, if we make it to the Super Bowl, you gonna wear your Hillis Jersey, Um, Duh... Hell ya! I can pretend there is Brown & Orange on the field, I have a great imagination. I at least hope one of my favorite teams makes it to the SB so I can actually cheer for a team I like. We will find out soon........ Yeah Football!
Have a nice weekend everybody.... Monday it's back to the same-old, same-old, so enjoy today & tomorrow as much as you can.
Cheers........ MK & Ed xo
Tuesday, December 28, 2010
Chemo Chair Day 12/28/10
Hey Peeps,
I felt obligated to update the Blog... My mother's friends and some of my family apparently do not like it when I do not write regularly. Unfortunately, the Holiday's do not thrill me like so many other people and I hate to be a Debbie-Downer around this time of year. It's always about the "stuff", the stuff you give, the stuff you get, is there enough stuff, should I get more stuff, etc... Granted, I like gifts as much as the next girl, but really, it's just extra stress in what has already been an overly stressful year. Nine months, 9 months we've been dealing with this crap... It is too much on certain days and some days are fine. No, I do not want people to feel sorry for us or bad for us, it is what it is (sorry Judy, I know you hate that - but, well, it is)! I'm angry right now so it's hard to write with any kind of optimism. Ed is feeling o.k., his foot and ankle remain swollen because of his blood clot, he has nausea every day, he cannot sleep well because of the pain in his back/sacrum bone.... The radiation did a big fat nothing for that pain. He just plugs along the best he can, and 99% of the time he does it with a smile on his face.
Today Ed is in the chemo-chair again for 6 hours, then home with his chemo pump until Thursday at Noon, then he leaves me and Paige on Friday, New Years Eve for another long week without him. Truly, living like this has become almost unbearable for me, he is, of course, fine with our continued 1 week on/1 week off arrangement. It breaks my heart continuously to know that I loose so much time with him when the doctors continue to tell us he has so little left. Ah, sacrifice for our families.... being a responsible grown-up is just oodle's of fun! On the bright side, we may spend New Years Eve together and I get to spend Sunday with him for our Browns-Steelers game day.... I'm too excited about that! Hoping the weather warms up a little, but regardless, we have club seats (thank you Powell Family) so we can stay toasty warm. I ordered my Hillis Jersey, should have it on Thursday, so I will be all set. Mmmmmm, I love me some #40, en-how! I love football, it's just awesome. And, no, people, we do not know about the Super Bowl yet.... As soon as I know something - you will know something.... I realize it is just 5 short weeks away, keep those fingers crossed. The Dream Foundation did send the girls Christmas gifts, which was very cool. It really seems to be an outstanding organization and whether we get to Dallas or they send us on our 2nd request, a trip to New Orleans, they are all good in my book!
So, wishing you all a healthy and prosperous New Year, I say so long to 2010, and by the way, 2010 can kiss my a$$. Bring on 2011 - hopefully we will get to California to get tumor cell profiling done within the next few months.... We are checking into two labs (Rational Therapeutics and the Weisenthal Cancer Group) to see if they can test Ed's tumor cells to find a chemo that will actually work... wouldn't that be a nice new year gift! Again, fingers crossed!
Peace! Ed & MK xo
I felt obligated to update the Blog... My mother's friends and some of my family apparently do not like it when I do not write regularly. Unfortunately, the Holiday's do not thrill me like so many other people and I hate to be a Debbie-Downer around this time of year. It's always about the "stuff", the stuff you give, the stuff you get, is there enough stuff, should I get more stuff, etc... Granted, I like gifts as much as the next girl, but really, it's just extra stress in what has already been an overly stressful year. Nine months, 9 months we've been dealing with this crap... It is too much on certain days and some days are fine. No, I do not want people to feel sorry for us or bad for us, it is what it is (sorry Judy, I know you hate that - but, well, it is)! I'm angry right now so it's hard to write with any kind of optimism. Ed is feeling o.k., his foot and ankle remain swollen because of his blood clot, he has nausea every day, he cannot sleep well because of the pain in his back/sacrum bone.... The radiation did a big fat nothing for that pain. He just plugs along the best he can, and 99% of the time he does it with a smile on his face.
Today Ed is in the chemo-chair again for 6 hours, then home with his chemo pump until Thursday at Noon, then he leaves me and Paige on Friday, New Years Eve for another long week without him. Truly, living like this has become almost unbearable for me, he is, of course, fine with our continued 1 week on/1 week off arrangement. It breaks my heart continuously to know that I loose so much time with him when the doctors continue to tell us he has so little left. Ah, sacrifice for our families.... being a responsible grown-up is just oodle's of fun! On the bright side, we may spend New Years Eve together and I get to spend Sunday with him for our Browns-Steelers game day.... I'm too excited about that! Hoping the weather warms up a little, but regardless, we have club seats (thank you Powell Family) so we can stay toasty warm. I ordered my Hillis Jersey, should have it on Thursday, so I will be all set. Mmmmmm, I love me some #40, en-how! I love football, it's just awesome. And, no, people, we do not know about the Super Bowl yet.... As soon as I know something - you will know something.... I realize it is just 5 short weeks away, keep those fingers crossed. The Dream Foundation did send the girls Christmas gifts, which was very cool. It really seems to be an outstanding organization and whether we get to Dallas or they send us on our 2nd request, a trip to New Orleans, they are all good in my book!
So, wishing you all a healthy and prosperous New Year, I say so long to 2010, and by the way, 2010 can kiss my a$$. Bring on 2011 - hopefully we will get to California to get tumor cell profiling done within the next few months.... We are checking into two labs (Rational Therapeutics and the Weisenthal Cancer Group) to see if they can test Ed's tumor cells to find a chemo that will actually work... wouldn't that be a nice new year gift! Again, fingers crossed!
Peace! Ed & MK xo
Wednesday, December 1, 2010
December 1, How is that even possible.
How is it possible that it is even December? How is it that almost 9 months ago we started on this horrific journey that led to the creation of this blog? How is it that someone like Ed could be sick when there are so many sicko's in the world who are living with no illness -or- only self-induced illness? How is that you finally get the gift of true love and then it can be taken away in a blink of an eye? How is it that I'm supposed to trust the higher power when He has done this to one of His most incredible creations? How is it that people can treat people like crap and still come up smelling like roses and the truth will forever be hidden? How is it that I can ramble on like this? O.K., I'm done with that.
I just want to thank the Powell family of Berea, Ohio. They are a St. Mary's family whose son, Andrew, and Paige were in Children's Letters to God together last year. They so graciously gifted Ed and myself club seats for the Jan. 2, 2011 Browns -v- Steelers game - with parking. How is it that just when you loose faith in people, people restore it in leaps and bounds - beyond imagination. So to Stephanie & Chris - our most sincere thanks!
Thanksgiving weekend was just a big old eating, drinking, family loving 4 days! With Dan, Lisa and Mark (and Jasmine) all home, it was wonderful to have everyone together for our special dinner. It was fantastic that Ed was able to have this Thanksgiving with us. We have never shared a Thanksgiving day together in our 5 years... for that I'm truly thankful. Plus THE Ohio State beat that nasty team from up north! Always makes for a great Saturday. Everybody sing, We don't give a damn about the whole state of Michigan, the whole state of Michigan, the whole state of Michigan.... 'cause we're from O-HIO ;)~
Ed will be completing his 10 days of radiation either on Dec. 7th or 8th. On 12/7 he will be having a medi-port installed (sounds like a car part). This will be used for his at home chemo hook-up. Can you say yucky. He will start his new chemo on 12/13; this is going to be a rough one. I guess it's supposed to be about 6 hours in the chair, then they hook up chemo to his medi-port and he continues at home with it for the next 48 hours - so about a 3 day process. He will get this every other week, or every 3rd week depending on how his body handles it. He will not be working and will be on short-term disability. He WILL go out of his mind... He LOVES to work (I know, he's insane). On the bright side, he has turned my very lovely girl living room into a man-cave of sorts; he bought me, yes, me, a 46" plasma flat-screen - just what every girl wants for Christmas (cough, cough *diamonds* cough, cough)... But, it is pretty cool. He will be watching ESPN a lot. I figure, if he is stuck on the couch, at least he will have a giant TV in my tiny living room to keep him company. I am going to get him a juicer, I am bound and determined to get some nutrients into that boy! So see, he gets me a TV I get him a kitchen appliance... turn around is fair play - no?!
Well, I will keep you all posted... Still have not heard anything from the Dream Foundation, but still keeping that wish alive for the Super Bowl in Dallas! Hopefully we will hear something next week.
Wishing each and everyone of you a very Merry Christmas and more importantly, a HEALTHY and Happy New Year.
Love Mary Kaye, Ed, Paige, Taylor & Kalista
I just want to thank the Powell family of Berea, Ohio. They are a St. Mary's family whose son, Andrew, and Paige were in Children's Letters to God together last year. They so graciously gifted Ed and myself club seats for the Jan. 2, 2011 Browns -v- Steelers game - with parking. How is it that just when you loose faith in people, people restore it in leaps and bounds - beyond imagination. So to Stephanie & Chris - our most sincere thanks!
Thanksgiving weekend was just a big old eating, drinking, family loving 4 days! With Dan, Lisa and Mark (and Jasmine) all home, it was wonderful to have everyone together for our special dinner. It was fantastic that Ed was able to have this Thanksgiving with us. We have never shared a Thanksgiving day together in our 5 years... for that I'm truly thankful. Plus THE Ohio State beat that nasty team from up north! Always makes for a great Saturday. Everybody sing, We don't give a damn about the whole state of Michigan, the whole state of Michigan, the whole state of Michigan.... 'cause we're from O-HIO ;)~
Ed will be completing his 10 days of radiation either on Dec. 7th or 8th. On 12/7 he will be having a medi-port installed (sounds like a car part). This will be used for his at home chemo hook-up. Can you say yucky. He will start his new chemo on 12/13; this is going to be a rough one. I guess it's supposed to be about 6 hours in the chair, then they hook up chemo to his medi-port and he continues at home with it for the next 48 hours - so about a 3 day process. He will get this every other week, or every 3rd week depending on how his body handles it. He will not be working and will be on short-term disability. He WILL go out of his mind... He LOVES to work (I know, he's insane). On the bright side, he has turned my very lovely girl living room into a man-cave of sorts; he bought me, yes, me, a 46" plasma flat-screen - just what every girl wants for Christmas (cough, cough *diamonds* cough, cough)... But, it is pretty cool. He will be watching ESPN a lot. I figure, if he is stuck on the couch, at least he will have a giant TV in my tiny living room to keep him company. I am going to get him a juicer, I am bound and determined to get some nutrients into that boy! So see, he gets me a TV I get him a kitchen appliance... turn around is fair play - no?!
Well, I will keep you all posted... Still have not heard anything from the Dream Foundation, but still keeping that wish alive for the Super Bowl in Dallas! Hopefully we will hear something next week.
Wishing each and everyone of you a very Merry Christmas and more importantly, a HEALTHY and Happy New Year.
Love Mary Kaye, Ed, Paige, Taylor & Kalista
Wednesday, November 24, 2010
For Celiac Disease / Gluton Free
Alicia Booth has done a wonderful story for people needing gluten-free food... I post this in Honor of my Sweet and Adorable Aunt Dorothy in Chicago... She's a doll and has to battle this horrific disease every day:
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Happy Thanksgiving Everyone........... Love MK & Ed
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Happy Thanksgiving Everyone........... Love MK & Ed
Friday, November 19, 2010
Thursday, November 18, 2010
Chanel 5 Interview with Alicia Booth
Today we had our interview with Alicia Booth, the News Chanel 5 Health Reporter. What a great experience it was. She made things as easy for us as she could have! I was of course a nervous wreck, Ed was his normal, calm, fantastic self! Hoping that I don't look like a big duffus tomorrow!
Our interview should air, tomorrow, Friday - Nov. 19, 2010 on the 5:00 evening news.
Make sure to set those DVR's!
I would like to personally thank my good friend, Barbie B., for helping make today possible, along with her boss, Jill Manuel and the gracious Alicia Booth.
We need to bring this cancer to the public eye, improve research funding, and ultimately, improve lives!
Our interview should air, tomorrow, Friday - Nov. 19, 2010 on the 5:00 evening news.
Make sure to set those DVR's!
I would like to personally thank my good friend, Barbie B., for helping make today possible, along with her boss, Jill Manuel and the gracious Alicia Booth.
We need to bring this cancer to the public eye, improve research funding, and ultimately, improve lives!
Wednesday, November 17, 2010
And so the waiting continues.....
Hi Everyone,
It's just been a crazy roller-coaster ride these last two weeks. Three days away from possible life saving surgery, only to discover the bone cancer and then the blood clot that developed in Ed's left leg (and it runs the entire length of his leg from the femoral vein into his calf - huge). The addition of two Lovenox (blood thinner) injections a day has been added to his other medications. How much more can he handle, right now, who knows?!
On the flip side of that coin, Newport's show on 11/13 at The Winchester in Lakewood was incredible. There were about 150 of the bands closest friends and family in attendance. Ed had the true "concert" experience and was just thrilled that he could do the set. Having our very dear friends son, Rex Larkman, on stage to play the drums for "Eighteen" was thrilling to say the least! Rex is a 14 year-old Rock God already :) Some people who had never seen Ed play out before were truly impressed, this quiet, humble, kind, sweet extraordinary man turns into this dark, deep, guitar mad-man on stage. One good friend dubbed him Clark Kent.... "Who Knew Ed had that side"... I know the feeling, the first time I saw him play out in May of 2006 I was quite astonished myself. He brings it on stage. Unfortunately, due to the blood clot, he moved around less than he normally would. He paid the price on Sunday as his foot ballooned up and the pain increased in the left leg quite a bit. But, he wouldn't have traded that night for anything.
Ed went to get the new markings on his abdomen for the next round of radiation for the bone cancer... No news yet on when that will begin. As far as I'm concerned, it needed to start YESTERDAY... My feelings of "urgency" do not seem to be all that important to the medical folks - UGH. It's very frustrating waiting. But, that is how it is and I cannot change the system. Ed sometimes is too polite, I'm trying to coach him into being more of a "squeaky wheel", he's getting better. Unfortunately, or fortunately, depending on how you look at it, he is just too kind and has patience beyond belief. Me, I have ZERO patience. To my family and good friends reading this, you know this to be the most honest statement of the decade.
Once the 10 days of radiation are completed, he will start chemotherapy once again. This chemo will be aggressive. It is a combination of Irinotecan, Oxaliplatin and Fluorouracil (5-FU) (oh, yeah, FU). He will have a medi-port inserted. He will go to UH and have about 6 hrs. of Chemo on site, then a pump will be attached to his medi-port and he will continue with 48 more hrs. of chemo at home. Then he will have the pump disconnected and be off chemo for about 11 days. It is an every-other week treatment that should prove to be a bit of a challenge. Do I think he can handle this, I DO. Does he think he can handle it, not sure yet. Do I think he can beat this 6-9 month life expectancy and hang in there longer, I DO. Does he, not sure yet. Will he, I think so. You got all that!
Ironically, when we first started going out 4 1/2 years ago, I always had a sense of urgency about us living together and spending a lot of time together. Somewhere in my gut I always felt, for some reason, that I would not have enough time with him (this of course always drove him crazy). We discussed this a little yesterday, he thinks I'm insane obviously. I have made up my mind to stop being a cry-baby for as long as possible and just enjoy whatever time we have together. If nothing, Ed has tried teaching me to be somewhat optimistic, even though it is truly against my nature. I'm a "realist" and people tell me that that is actually being a pessimist... I disagree. I may not express when I'm feeling optimistic, only because I know that when you tell God your plans, he will throw a monkey wrench into them every single time. This is so we remember He is really in charge. One of Ed's favorite things to tell me is keep my expectations low, then disappointment isn't as bad as it might be. I'm learning to keep things on a more even keel, avoid the high-highs and the low-lows - keep yourself on an emotional middle-ground. I realize I will have trouble with this, but I am certainly going to try.
We love you all much and continue to ask you to check out PANCAN.ORG and see how you can help. Research is sorely lacking for pancreatic cancer and this is just unacceptable. The web-site makes it SOOOO easy for you to help. You click a few buttons and you can address your local and state representatives to help back crucial bills for research and funding decisions. It's time to take the purple to the streets and fight this monster. As one of Ed's cancer care nurses said on Friday, Pancreatic Cancer is where Breast Cancer was 40 years ago - this needs to change. There is a 90% survival rate at the 5 year mark for Breast Cancer patients, for pancreatic it is 6%, 75% of pancreatic cancer patients do not even survive one year.... This is so wrong.
We will continue to keep you all posted as Ed progresses in this treatment. Also, Alicia Booth, the Chanel 5 Health Reporter, is coming to my house tomorrow afternoon (11/18) to interview us on bringing awareness to this important cause. It is November - It is Pancreatic Cancer Awareness Month. We will let everyone know when the interview will be on TV. I'm fairly stressed about this.
Wishing you all good health over the upcoming Holiday Season... Enjoy time with your loved ones, Ed and MaryKaye
Friday, November 5, 2010
No surgery - misinformation given earlier today.
Sorry everyone, turns out the Surgeons secretary jumped the gun, the surgeon called about 7:40 p.m. tonight, Ed has bone cancer. No surgery. Needless to say, we are devestated right now.
Total Pancreatectomy - Monday 11/8/2010
Total Pancreatectomy
A total pancreatectomy is performed in the rare (that's Ed - Rare) situation that the tumor has invaded the head, neck, and tail of the pancreas. Similar to a Whipple procedure, the gallbladder, part of the duodenum which is the uppermost part of the small intestine, bottom portion of the stomach called the pylorus, and local lymph nodes are removed along with the entire pancreas. The spleen will also be removed.
Because the entire pancreas is removed in a total pancreatectomy, the person will be diabetic after surgery and must use insulin to control blood sugar level. The patient will also need to take pancreatic enzyme supplements with meals in order to properly digest food.
O.K. people - We Are On For Surgery Monday 11/8/2010.... Thus meaning that the CT-Biopsy for his pelvic bone was NEGATIVE for the big C.... Although that dept. didn't contact Ed personally, the call from the surgeons office telling us we had to be downtown by 6 a.m. on Monday pretty much confirmed the No Cancer diagnosis for the bone.
O M G...... I'm scared, I'm happy, I'm freaked-out, I'm sad, I'm elated... So, anyone wanting to have drinks with us - we will be down at Dickey's for our monthly couples bowling tomorrow night around 7 p.m.'ish... Obviously, I'll be bowling alone so I could use a partner.... ***crickets*** Anyone?!
Will keep you posted next week on how things are going?! Deep breaths,,,, Deep breaths,,,, Thank you all for your continued support, prayers & good wishes!!!!
MK & Ed
A total pancreatectomy is performed in the rare (that's Ed - Rare) situation that the tumor has invaded the head, neck, and tail of the pancreas. Similar to a Whipple procedure, the gallbladder, part of the duodenum which is the uppermost part of the small intestine, bottom portion of the stomach called the pylorus, and local lymph nodes are removed along with the entire pancreas. The spleen will also be removed.
Because the entire pancreas is removed in a total pancreatectomy, the person will be diabetic after surgery and must use insulin to control blood sugar level. The patient will also need to take pancreatic enzyme supplements with meals in order to properly digest food.
O.K. people - We Are On For Surgery Monday 11/8/2010.... Thus meaning that the CT-Biopsy for his pelvic bone was NEGATIVE for the big C.... Although that dept. didn't contact Ed personally, the call from the surgeons office telling us we had to be downtown by 6 a.m. on Monday pretty much confirmed the No Cancer diagnosis for the bone.
O M G...... I'm scared, I'm happy, I'm freaked-out, I'm sad, I'm elated... So, anyone wanting to have drinks with us - we will be down at Dickey's for our monthly couples bowling tomorrow night around 7 p.m.'ish... Obviously, I'll be bowling alone so I could use a partner.... ***crickets*** Anyone?!
Will keep you posted next week on how things are going?! Deep breaths,,,, Deep breaths,,,, Thank you all for your continued support, prayers & good wishes!!!!
MK & Ed
Tuesday, November 2, 2010
Set backs, set backs, set backs
Today - 11/2/2010.......... A day of hope for many politicians, a day of more fear for my household.
Ed has been in tremendous pain for the last 3 weeks, the last 5 days have been down right unbearable. As we went to UH today for pre-admission testing because Monday, 11/8, was "supposed" to be the big surgery day, they did an emergency spinal block for him. He slept this evening for about 2 hrs., the most amount of consecutive sleep he has had in over a week. It has been night-mare'ish to say the least.
So, after blood work, EKG, chest-exrays, pre-admission paper work and the spinal... we finally get to the surgeons office about 1:30 to find out exactly what to expect on Monday... STOP.... Well, Ed had an MRI last week to figure out what was causing his back pain, turns out it "could be", could be, cancer that has metastasized from his pancreatic tumor. W T F MAN. Are you even kidding me. Less than a week from surgery and this is the news we get. So, Ed will have a CT-biopsy on his pelvic bone on Thursday 11/4 and we are hoping that the results will be rushed. Here are the scenarios:
1) Bone lesion is just a degenerative area, not cancer - Surgery to go forward, which will include removal of pancreas and most probably, spleen/gallbladder/partial duodenal bypass,and some stomach; 7-14 days in hospital; about 3 more weeks recovery at home, this assuming there are no complications. This surgery has a 20-50% complication rate ranging from very minor to highly serious. You can google pancreas removal (pancreaectomy) and see all kinds of fun stuff.
2) Bone lesion is Cancer - No surgery; ever; just try and manage it with chemo and enjoy life the best you can.
So, we are back in a wait & see pattern for the next few days. On the plus side, he should finally be able to get some much needed rest. It has been HELL to say the least.
And Finally, on our way home from UH I get a phone call from my Aunt - my Mom was admitted to Fairview Hospital today with an irregular heart beat, all clammy and just a "something is very wrong" kinda feeling. She had a CT scann on her aeorta (sp?) and is resting; Not a heart-attack; but not sure if something screwy is going on with her pace-maker?! Good Times. Glad I drink beer!
Well, that is it in a nut shell..... Will let you all know what is going on as soon as we know what is going on!
Ed says - hey, if I don't have surgery - I get to play out with Newport on 11/13 at the Winchester... The Show Must Go On!
Wishing you all good health - more than you could possibly imagine.
Ed has been in tremendous pain for the last 3 weeks, the last 5 days have been down right unbearable. As we went to UH today for pre-admission testing because Monday, 11/8, was "supposed" to be the big surgery day, they did an emergency spinal block for him. He slept this evening for about 2 hrs., the most amount of consecutive sleep he has had in over a week. It has been night-mare'ish to say the least.
So, after blood work, EKG, chest-exrays, pre-admission paper work and the spinal... we finally get to the surgeons office about 1:30 to find out exactly what to expect on Monday... STOP.... Well, Ed had an MRI last week to figure out what was causing his back pain, turns out it "could be", could be, cancer that has metastasized from his pancreatic tumor. W T F MAN. Are you even kidding me. Less than a week from surgery and this is the news we get. So, Ed will have a CT-biopsy on his pelvic bone on Thursday 11/4 and we are hoping that the results will be rushed. Here are the scenarios:
1) Bone lesion is just a degenerative area, not cancer - Surgery to go forward, which will include removal of pancreas and most probably, spleen/gallbladder/partial duodenal bypass,and some stomach; 7-14 days in hospital; about 3 more weeks recovery at home, this assuming there are no complications. This surgery has a 20-50% complication rate ranging from very minor to highly serious. You can google pancreas removal (pancreaectomy) and see all kinds of fun stuff.
2) Bone lesion is Cancer - No surgery; ever; just try and manage it with chemo and enjoy life the best you can.
So, we are back in a wait & see pattern for the next few days. On the plus side, he should finally be able to get some much needed rest. It has been HELL to say the least.
And Finally, on our way home from UH I get a phone call from my Aunt - my Mom was admitted to Fairview Hospital today with an irregular heart beat, all clammy and just a "something is very wrong" kinda feeling. She had a CT scann on her aeorta (sp?) and is resting; Not a heart-attack; but not sure if something screwy is going on with her pace-maker?! Good Times. Glad I drink beer!
Well, that is it in a nut shell..... Will let you all know what is going on as soon as we know what is going on!
Ed says - hey, if I don't have surgery - I get to play out with Newport on 11/13 at the Winchester... The Show Must Go On!
Wishing you all good health - more than you could possibly imagine.
Wednesday, October 13, 2010
One More Week In Limbo
Well, what a crazy week...
We had our mini 5 day vacation in Hilton Head to celebrate my baby cousins wedding, Lisa and Mark what a fabulous wedding you had! The weather was incredible, 85 & sunny! My sunburn can attest to the weather, I turned into a lobster. The boys golfed on Friday - Ed loved every minute of it, even though he only golfs about once every two years! And, his foursome won! He loved being with Mark's Dad & Brother-In-Law out on the course, really got to know all the guys well! Came back in quite the good mood. He fell in love with Aaron (sp?), one of Lisa's friends husbands... Immediate Bro-friends! He enjoyed Dallas (as we all do)... We got to know Emily & Sam, Dan's friends, we loved hearing everyone say "The Kelly's", I had Josh the personal musician on the balcony above mine to keep me entertained, breakfast was always just a fantastic gathering of friends & family... it was truly a perfect weekend. Ed and I both hit the exhaustion wall on Sunday evening (the Browns loss didn't help our spirits) and are still continuing to recover!
The wedding was on the beach and was just beautiful. The food was fabulous. The friends and family together just couldn't be beat.
It was a great distraction for what we are waiting for next Thursday (10/21)... triple CT scan, blood work and meeting with the Oncologist & Surgeon right after all results are back. We are scared. For only the 2nd or 3rd time since this nightmare began, Ed is not feeling very positive right now. He thinks for some reason we are going to get bad news... I pray he is wrong and that we are granted a miracle. If surgery is an option, I'm sure it will be done very, very quickly. If Ed's cancer has metastatsized or the tumor has not shrunk away from his major arteries and surgery is not an option, I don't know what the course of action will be.
Remember, November is pancreatic cancer awareness month... I know everyone loves to save the tata's, but pancreatic cancer needs some major attention! There is still only a 6% survival rate, only 2% of the National Cancer Institutes money goes to pancreatic cancer research, pancreatic cancer has not had any improvements in survivability in over 40 years - 40 years - that is insane people, pancreatic cancer is the #4 cancer killer in this country.... Nuff said! Work needs to be done. So check out pancan.org and see what you can do to help!
Love to all!!!
We had our mini 5 day vacation in Hilton Head to celebrate my baby cousins wedding, Lisa and Mark what a fabulous wedding you had! The weather was incredible, 85 & sunny! My sunburn can attest to the weather, I turned into a lobster. The boys golfed on Friday - Ed loved every minute of it, even though he only golfs about once every two years! And, his foursome won! He loved being with Mark's Dad & Brother-In-Law out on the course, really got to know all the guys well! Came back in quite the good mood. He fell in love with Aaron (sp?), one of Lisa's friends husbands... Immediate Bro-friends! He enjoyed Dallas (as we all do)... We got to know Emily & Sam, Dan's friends, we loved hearing everyone say "The Kelly's", I had Josh the personal musician on the balcony above mine to keep me entertained, breakfast was always just a fantastic gathering of friends & family... it was truly a perfect weekend. Ed and I both hit the exhaustion wall on Sunday evening (the Browns loss didn't help our spirits) and are still continuing to recover!
The wedding was on the beach and was just beautiful. The food was fabulous. The friends and family together just couldn't be beat.
It was a great distraction for what we are waiting for next Thursday (10/21)... triple CT scan, blood work and meeting with the Oncologist & Surgeon right after all results are back. We are scared. For only the 2nd or 3rd time since this nightmare began, Ed is not feeling very positive right now. He thinks for some reason we are going to get bad news... I pray he is wrong and that we are granted a miracle. If surgery is an option, I'm sure it will be done very, very quickly. If Ed's cancer has metastatsized or the tumor has not shrunk away from his major arteries and surgery is not an option, I don't know what the course of action will be.
Remember, November is pancreatic cancer awareness month... I know everyone loves to save the tata's, but pancreatic cancer needs some major attention! There is still only a 6% survival rate, only 2% of the National Cancer Institutes money goes to pancreatic cancer research, pancreatic cancer has not had any improvements in survivability in over 40 years - 40 years - that is insane people, pancreatic cancer is the #4 cancer killer in this country.... Nuff said! Work needs to be done. So check out pancan.org and see what you can do to help!
Love to all!!!
Thursday, September 23, 2010
One Month to Wait
Went to the Oncologist today.... Tomorrow is the last day (day #33) of radiation and then Ed's body will get the break it so richly deserves. One month with No chemo (13 rounds completed) and No radiation - just let the medicine that is in his body work it's magic for 4 long weeks. On October 21, 2010 Ed will have a CT Scan, Blood Work and then meet with Drs. Meropol (Oncologist) and Hardacre (Surgeon) to see what our next steps will be. We pray that surgery is next on our plate. Although the surgery is scary and not without great risk, it is truly the only hope for any longevity of life. I am supposed to be supporting him but I'm an emotional basket-case. Thank goodness Ed is the supportive, positive, strong man that he is. He makes me laugh even when I do not want to, he makes me cry because he CAN do that. I cannot imagine living without that gift in my life.
I pray that with Dorothy in heaven, she is talking God's ear off and convincing him to let Ed stay with us for quite a while. He has a pretty big fan club up there and I ask them each day to help us.
He was incredibly strong over the last 6 days, he is tired, but resting a little better these last two evenings... I think with his Mom's passing, there is a bit of peace as she suffered greatly and it was time. Frannie was incredibly strong as well. I will need Frannie more than ever in the coming months.
Once again - thank you to everyone for your support, prayers and positive energey. Ed's band will be playing out on Friday, Oct. 22, 2010 at the Euclid Tavern and our sincerest hope is that this will be a night to celebrate. In the meantime, he has his children, his step-daughter, his sister, his band, his friends, his boat and an incredibly devoted fiance' to keep him busy.
Oh yeah, and there is this little wedding we get to go to in Hilton Head soon that should be a ton of fun.... Four days on the beach cann't hurt.
Peace! xoxo MK & Ed xoxo
I pray that with Dorothy in heaven, she is talking God's ear off and convincing him to let Ed stay with us for quite a while. He has a pretty big fan club up there and I ask them each day to help us.
He was incredibly strong over the last 6 days, he is tired, but resting a little better these last two evenings... I think with his Mom's passing, there is a bit of peace as she suffered greatly and it was time. Frannie was incredibly strong as well. I will need Frannie more than ever in the coming months.
Once again - thank you to everyone for your support, prayers and positive energey. Ed's band will be playing out on Friday, Oct. 22, 2010 at the Euclid Tavern and our sincerest hope is that this will be a night to celebrate. In the meantime, he has his children, his step-daughter, his sister, his band, his friends, his boat and an incredibly devoted fiance' to keep him busy.
Oh yeah, and there is this little wedding we get to go to in Hilton Head soon that should be a ton of fun.... Four days on the beach cann't hurt.
Peace! xoxo MK & Ed xoxo
Friday, September 17, 2010
Dorothy Demyan passed away today
Ed and Frannie's Mom passed away this morning. She was in terrible pain and she is now at peace. She had terminal cancer. Ed and I have decided that we know she is happy now because she can finally see Joey after all this time.
xo All xo
xo All xo
Thursday, September 16, 2010
It's been a rough week...
Man... These weeks that Ed is in Brooklyn and I'm in the 'Ville... take forever... I'm bored out of my mind and I need a hobby or something to keep me busy. Well, that is when I'm not being a certain teenager girls driver, maid, cook, slave, etc... you get the picture.
Ed has five more radiation treatments to go, chemo on Monday; will see the Oncologist on Thursday 9/23, which is the last radiation day... Then we see where we go from there... LIMBO right now... no set day for next CT scan. I'd give my left leg if they would just do one now. The waiting is so hard for me. Of course, Mr. Fantastic just takes it all in stride. Oh, maybe because he bought a BOAT this week, oh, yes, a boat... On E-Bay... Did I mention when I write my book, the title is going to be "Men are Idiots, Even with Cancer". I told him, don't will that thing to me... give it to Furda. Then of course, there is his weekly band practice... Oy. If he gets any busier I'll forget what he looks like. Good thing I take lots of pictures.
We have had no solid news on his status at this point, and I HATE that. I like answers. There are none. It seems there won't be any for atleast another 4 weeks. On the bright side, we have our Hilton Head trip coming up in less than a month for my baby cousin's wedding. Yeah yeah. I could use some R&R on the beach, even if it is only a couple days. What I really need is two weeks on a ship with just Ed... and some cocktails... and some sun... you get it.
Well, I'll be back on when there is something to report. For now, Ed has a boat, that is all the news we have. Pray for us... Well, for my sanity anyways. :) xo all.
Ed has five more radiation treatments to go, chemo on Monday; will see the Oncologist on Thursday 9/23, which is the last radiation day... Then we see where we go from there... LIMBO right now... no set day for next CT scan. I'd give my left leg if they would just do one now. The waiting is so hard for me. Of course, Mr. Fantastic just takes it all in stride. Oh, maybe because he bought a BOAT this week, oh, yes, a boat... On E-Bay... Did I mention when I write my book, the title is going to be "Men are Idiots, Even with Cancer". I told him, don't will that thing to me... give it to Furda. Then of course, there is his weekly band practice... Oy. If he gets any busier I'll forget what he looks like. Good thing I take lots of pictures.
We have had no solid news on his status at this point, and I HATE that. I like answers. There are none. It seems there won't be any for atleast another 4 weeks. On the bright side, we have our Hilton Head trip coming up in less than a month for my baby cousin's wedding. Yeah yeah. I could use some R&R on the beach, even if it is only a couple days. What I really need is two weeks on a ship with just Ed... and some cocktails... and some sun... you get it.
Well, I'll be back on when there is something to report. For now, Ed has a boat, that is all the news we have. Pray for us... Well, for my sanity anyways. :) xo all.
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