Well, Folks, I hate to write this, but the Xeloda didn't work for Ed. He was supposed to take the medication for 14 days, he lasted only 5. It made him very sick and he lost about 10 lbs. in those 5 days. This was most probably the last chemo he will try and my heart is completely broken for him and the rest of us who love him so much.
He also has a "sizable" blood clot in his right calf now as well as the very large one in his left leg. He remains in a great deal of pain on any given day and it is just unbelievable that our medical community has not figured this stuff out yet. But if they figure it out, the big Pharmaceutical Co's & the Gov't. will lose too much money, because after all, it really is all about the money, no?! Anyway, I'm a bit bitter this week, can you tell. Ed had his blood thinner med changed to Arixtra in the hopes of helping with the clots. I guess all that is left to do is pray, which quite frankly, I'm having personal issues with.
Sandy H.'s hot dog sale on Sat. was quite the success. Sandy and the kids raised $513 for Ed's All Star Dream Team for PurpleStride Cleveland! We are touched by their hard work and dedication to this important cause. Go Team Ed!
We are supposed to depart on our cruise this Sunday, but depending on what the Oncologist says on Thursday, we may still cancel as we don't know if he will get a green light to fly?! I did finally get Ed to start wearing the circulation stockings, but um, it's a bit late now. I did nag him relentlessly about wearing them for the past several months, but, well, he's a man. Hopefully they will help a little with reducing the swelling and cutting some of the pain in his calf.
And, I want to shout out to our PurpleStride team.... We are 29 members strong right now and still growing! We may have the biggest team ever. So thank you everyone for your support, it means a great deal to Ed and myself.
One last thing, we went back to the B-Spot in Strongsville and I DID get the Vanilla Apple-Pie Bacon Shake, Chef Symon you are a genius. Ed wouldn't taste the shake, but he did have the fabulous Root Beer Float... I had, I think, the Lola Burger which has the Egg on it - O M G, heaven on a bun baby! The chips were awesome, but I don't do strong cheeses, so the dip wasn't for me. Way to much food for the two of us! But, it was a nice way to end what was otherwise a sad week. I highly recommend that everyone go in on a Friday afternoon about 2:30 p.m., you can waltz right in, get a table, enjoy some awesome service and have the best burger on the West Side!
Take Care Everyone.... Hopefully the weather will continue on this new pattern of sunny days for a while!
Peace, Ed and MK
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, May 10, 2011
Tuesday, April 26, 2011
New Chemo To Start This Week
Usual disclaimer - no spell check - Ugh!
On Tuesd., 4/19 Ed had a CT Scan on his entire mid-section; on Thursday 4/21 (our 5 yr. anniversary by the way) we met with the Oncologist for the results. It is quite funny how Ed and I hear the same words come out of the Doctor's mouth, but do not hear the same "meaning"; So folks, what you have all been waiting for... Ed's Pancreatic tumor has remained the same size, no change there, which the Doc felt was positive; there are new lesions on his lungs (I think he said about 4), small, but there none-the-less; there is one 1/2" lesion on his spleen; and there are "several" new small bone lesions - what the word "several" means, well, your guess is as good as mine. His liver is still clean, which is awesome, seeing that his liver is processing the gagillion medications he has to take & will be processing the new chemo med. Ed heard all this and thought it was pretty good news, I heard all this and was fairly devastated. We forgot to ask if the scans identified if his bone fracture had healed at all... Ed is meeting with a Pain Management specialist today (4/26) and he should find out what happened with the fracture. The bone cancer pain is just incredibly debilitating and we are hoping that the pain doc can find a way to decrease that pain without upping the already crazy amount of pain-med's he takes.
Also, either today or tomorrow, he will being a new chemo pill called Xeloda (capecitabine: http://www.xeloda.com/xeloda-side-effects.aspx)
This is a two-week on, one week off treatment. He will take it in the morning and in the evening. We had received a message from a woman who's husband has had great success on this medication (22 months & still going) and we are desperately hoping/praying Ed can tolerate this medication and it will give us some more time. One never knows, if he hangs in there long enough, maybe another medical-break-through could happen and he could stay with us a bit longer than what the doctor had originally guess-timated. Seeing that in November he was given 6-9 months, and we are sitting at that 6 month mark RIGHT now - I am not ready to give up and neither is Ed.
His fishing trip really took a toll on him; he came back completely exhausted with two very swollen calves/feet - he was rockin' the c'ankles. Well, he rested all last week with his feet up and he is pretty much back to his old self. We had a lovely & relaxing Easter weekend. Drinks outside on Sat. night with the Furda's & Cigas' - that was an unexpected, but completely fun night. Easter was very chill, Ed had a nice big Easter Brunch and then napped quite a bit, which was just what he needed.
We leave in 18 days for our cruise out of San Juan and we couldn't be more excited! It will be 8 days of relaxation - no pressure to do anything but sit on deck and relax... We are only planning on doing one shore excursion in Barbados - which is snorkeling with sea turtles; if Ed doesn't feel up to it, he can just sit on the sail-boat & chill; All Good. I need this break more than anything... So Excited!
Ed continues to play with Newport on Tuesday evenings and they are working on recording so I am anticipating a full CD sometime soon - I am fairly excited to hear the finished product!
Thank you for continuing to keep us in your prayers - it is much appreciated.
Peace - Mk & Ed xo
On Tuesd., 4/19 Ed had a CT Scan on his entire mid-section; on Thursday 4/21 (our 5 yr. anniversary by the way) we met with the Oncologist for the results. It is quite funny how Ed and I hear the same words come out of the Doctor's mouth, but do not hear the same "meaning"; So folks, what you have all been waiting for... Ed's Pancreatic tumor has remained the same size, no change there, which the Doc felt was positive; there are new lesions on his lungs (I think he said about 4), small, but there none-the-less; there is one 1/2" lesion on his spleen; and there are "several" new small bone lesions - what the word "several" means, well, your guess is as good as mine. His liver is still clean, which is awesome, seeing that his liver is processing the gagillion medications he has to take & will be processing the new chemo med. Ed heard all this and thought it was pretty good news, I heard all this and was fairly devastated. We forgot to ask if the scans identified if his bone fracture had healed at all... Ed is meeting with a Pain Management specialist today (4/26) and he should find out what happened with the fracture. The bone cancer pain is just incredibly debilitating and we are hoping that the pain doc can find a way to decrease that pain without upping the already crazy amount of pain-med's he takes.
Also, either today or tomorrow, he will being a new chemo pill called Xeloda (capecitabine: http://www.xeloda.com/xeloda-side-effects.aspx)
This is a two-week on, one week off treatment. He will take it in the morning and in the evening. We had received a message from a woman who's husband has had great success on this medication (22 months & still going) and we are desperately hoping/praying Ed can tolerate this medication and it will give us some more time. One never knows, if he hangs in there long enough, maybe another medical-break-through could happen and he could stay with us a bit longer than what the doctor had originally guess-timated. Seeing that in November he was given 6-9 months, and we are sitting at that 6 month mark RIGHT now - I am not ready to give up and neither is Ed.
His fishing trip really took a toll on him; he came back completely exhausted with two very swollen calves/feet - he was rockin' the c'ankles. Well, he rested all last week with his feet up and he is pretty much back to his old self. We had a lovely & relaxing Easter weekend. Drinks outside on Sat. night with the Furda's & Cigas' - that was an unexpected, but completely fun night. Easter was very chill, Ed had a nice big Easter Brunch and then napped quite a bit, which was just what he needed.
We leave in 18 days for our cruise out of San Juan and we couldn't be more excited! It will be 8 days of relaxation - no pressure to do anything but sit on deck and relax... We are only planning on doing one shore excursion in Barbados - which is snorkeling with sea turtles; if Ed doesn't feel up to it, he can just sit on the sail-boat & chill; All Good. I need this break more than anything... So Excited!
Ed continues to play with Newport on Tuesday evenings and they are working on recording so I am anticipating a full CD sometime soon - I am fairly excited to hear the finished product!
Thank you for continuing to keep us in your prayers - it is much appreciated.
Peace - Mk & Ed xo
Monday, April 25, 2011
Ohio - PurpleStride Cleveland 2011 - Home
HEY PEEPS.... If you are planning on joining us for Purple Stride on June 18th you must register on-line ASAP... Everyone needs to be registered, even the kids! Ages 3 & up all need to be registered & get a Zoo ticket for admission to the event which includes the entire day at the Zoo after the walk/run. Don't Wait! Registration on day of event goes up by $10 and you won't be guaranteed your awesome t-shirt!
Ohio - PurpleStride Cleveland 2011 - Home
Ohio - PurpleStride Cleveland 2011 - Home
Tuesday, April 12, 2011
Deagans in Lakewood - Awesome!
Here is the link: http://www.deagans.com/
Well, seeing that after I blogged about the B-Spot in Strongsville, and that post has already had 71 page views, I thought, hmmmmm, I might as well do another little plug.
Last Thursday, Ed and I attended a fund-raiser for our upcoming Purple Stride Event at Deagans in Lakewood - What a grand experience. They have a small back room and we had it filled to the gill! Thank You Kelly for putting on this oustanding event. She had great prizes and the people there couldn't have been more supportive.
But, let me tell you, the food that was served and the fun beer tasting made the event even more special. The owner seemed quite young (but then again, as I get older, everyone else seems younger) and he was a very gracious host. We were able to taste 4 different beers, of course, I don't remember the names of them. One sounded something like "heffa-vice-a", yeah, I know that is not even close to how it is spelled. I liked that one very much and as most of you know, I don't veer to far from my Miller Lite! The other beer I truly enjoyed was a Milk-Stout something - again, I don't remember, I'm old. But I tell, ya, I will be ordering one of those at the B-Spot next time I'm there cause I hear they have it also. It doesn't have carbination and it's a strange sensation. The food served that night was really great as well. There was a fig wrapped in bacon thingy, I'll eat anything if bacon is involved, it was quite good. Ed really enjoyed the wings and of course the cheese platter with some yummy meats was awesome.
Just thought I'd give them a plug seeing as they had to put up with us that night and it was truly a great evening!
So thanks Deagans! Maybe this will get you a few more visitors.
Oh, and Ed is having an alright time in the Key's this week. He has had some major pain flair ups, again reaching as high as a 10 on the pain scale. He was on a fishing charter yesterday with the guys and he got sea-sick. He wound up taking a 5 hour nap on the boat - that was one expensive nap. He said it was the best sleep he has had in over 3 months and he would gladly pay again for a nap like that - ha. They did catch two fish they were able to have for dinner last night. Today he and Michael are on a smaller boat doing some more fishing, hopefully he will actually be able to cast a line today! Oh, and they gave Rob a mohawk, yeah, these are 48 year old men, too funny! He misses me and the kids very much and leaves me the most awesome messages. I told him 7 nights was too many, but does he listen to me, nooooooo. :)~
When he gets back, I'm making him take me back to the Bspot for one of those vanilla-apple-pie-bacon shakes. I am dying to try that thing! OH,and one of those milk-beers, Ha.
Peace all - MK
Well, seeing that after I blogged about the B-Spot in Strongsville, and that post has already had 71 page views, I thought, hmmmmm, I might as well do another little plug.
Last Thursday, Ed and I attended a fund-raiser for our upcoming Purple Stride Event at Deagans in Lakewood - What a grand experience. They have a small back room and we had it filled to the gill! Thank You Kelly for putting on this oustanding event. She had great prizes and the people there couldn't have been more supportive.
But, let me tell you, the food that was served and the fun beer tasting made the event even more special. The owner seemed quite young (but then again, as I get older, everyone else seems younger) and he was a very gracious host. We were able to taste 4 different beers, of course, I don't remember the names of them. One sounded something like "heffa-vice-a", yeah, I know that is not even close to how it is spelled. I liked that one very much and as most of you know, I don't veer to far from my Miller Lite! The other beer I truly enjoyed was a Milk-Stout something - again, I don't remember, I'm old. But I tell, ya, I will be ordering one of those at the B-Spot next time I'm there cause I hear they have it also. It doesn't have carbination and it's a strange sensation. The food served that night was really great as well. There was a fig wrapped in bacon thingy, I'll eat anything if bacon is involved, it was quite good. Ed really enjoyed the wings and of course the cheese platter with some yummy meats was awesome.
Just thought I'd give them a plug seeing as they had to put up with us that night and it was truly a great evening!
So thanks Deagans! Maybe this will get you a few more visitors.
Oh, and Ed is having an alright time in the Key's this week. He has had some major pain flair ups, again reaching as high as a 10 on the pain scale. He was on a fishing charter yesterday with the guys and he got sea-sick. He wound up taking a 5 hour nap on the boat - that was one expensive nap. He said it was the best sleep he has had in over 3 months and he would gladly pay again for a nap like that - ha. They did catch two fish they were able to have for dinner last night. Today he and Michael are on a smaller boat doing some more fishing, hopefully he will actually be able to cast a line today! Oh, and they gave Rob a mohawk, yeah, these are 48 year old men, too funny! He misses me and the kids very much and leaves me the most awesome messages. I told him 7 nights was too many, but does he listen to me, nooooooo. :)~
When he gets back, I'm making him take me back to the Bspot for one of those vanilla-apple-pie-bacon shakes. I am dying to try that thing! OH,and one of those milk-beers, Ha.
Peace all - MK
Friday, April 8, 2011
B-Spot Strongsville - Awesome!
Usual Disclaimer - no spell check, expect errors & type-o's folks:
Oh, what a lovely day for a burger man. Yes, I know it's Lent; Yes, I know we should not have been eating meat today; Yes, I know most of you don't give a crap. But what a great lunch. I had the pink-squirrel, which was fab - u - lous, the Lola fries and the Brueben burger - best burger I have had since back in the day's of stopping at Whitey's on the way to Blossom - circa mid '80's! Ed had the simple salad, which he enjoyed very much, currently his taste-buds are all into lettuce. He also ordered a Brat, but it wasn't agreeing with him. No prob's there - brought home the leftovers and Paige had them gone within 15 min's of getting off the bus. I am too stoked to have a Michael Symon joint in our neighborhood. I love, love Lolita, have planned two business dinners there over the years for work in the private room and they were both just awesome! So Hooray Chef Symon and welcome to the 'ville!
I have been so excited about the Bspot opening in Strongsville that I knew I wanted to try it immediately! So, seeing that it has been open all of 3 days, I think we did pretty well on getting there. We tried to plan it so our wait would be minimal, I took 1/2 day off from work so Ed and I could have a neat lunch experience. And, neat it was! Our server was just a super, sweet bubbly blonde - she must have thought I was crazy, I was so giddy when I ordered!
Ed leaves all of us behind in chilly C-town tomorrow to go to the FL, Keys for 7 glorious days of sun with 7 of his boys. Needless to say, I am not thrilled about this little adventure. I worry endlessly about him when I am not around him, I know he will be fine, but my worry-gene is in super-high gear right now. On the bright-side, he did see his Oncologist yesterday and they were impressed with how well he is maintaining his weight and that he still, *wait for it* "looks so good". We all know how much I love it when people say that. He will get a CT when he returns from FL, then will reconsider starting another round of Chemo. He got a new prescrption for a higher does pain killer, hoping this works better than the last one. It will be difficult for him to sit through his upcoming flights if it doesn't work well. Rob and Cigar, you are the two I trust the most to be his "Mom", make sure he rests and remind him to take his Creon when he eats! Love you boys much, I know Ed is really excited to hit the road tomorrow. You know you love someone when you are willing to take them to the airport at 4:30 a.m.! And love that boy I do.
So, again, not much on the disease today, as things have not changed much recently - the pain is horrific, some points being as high as a 10 - the sleep doesn't come, and when it does, his phone will always ring - he eats as much as he can, when he can - and he remains fairly positive these days even though I know he is exhausted. Our hope with the new pain meds is for him to get some much needed & solid sleep. I know the Vitamin D from the warm FL sun will be great therapy for him as well.
Oh, and Ed's All Star Dream Team has raised $1200 already for our Purple Stride event at the Cleveland Zoo on June 18th! The link to our team is at the top of the page to the right of the posts - join us if you can!
With Love & Blessings - Ed and MK
Oh, what a lovely day for a burger man. Yes, I know it's Lent; Yes, I know we should not have been eating meat today; Yes, I know most of you don't give a crap. But what a great lunch. I had the pink-squirrel, which was fab - u - lous, the Lola fries and the Brueben burger - best burger I have had since back in the day's of stopping at Whitey's on the way to Blossom - circa mid '80's! Ed had the simple salad, which he enjoyed very much, currently his taste-buds are all into lettuce. He also ordered a Brat, but it wasn't agreeing with him. No prob's there - brought home the leftovers and Paige had them gone within 15 min's of getting off the bus. I am too stoked to have a Michael Symon joint in our neighborhood. I love, love Lolita, have planned two business dinners there over the years for work in the private room and they were both just awesome! So Hooray Chef Symon and welcome to the 'ville!
I have been so excited about the Bspot opening in Strongsville that I knew I wanted to try it immediately! So, seeing that it has been open all of 3 days, I think we did pretty well on getting there. We tried to plan it so our wait would be minimal, I took 1/2 day off from work so Ed and I could have a neat lunch experience. And, neat it was! Our server was just a super, sweet bubbly blonde - she must have thought I was crazy, I was so giddy when I ordered!
Ed leaves all of us behind in chilly C-town tomorrow to go to the FL, Keys for 7 glorious days of sun with 7 of his boys. Needless to say, I am not thrilled about this little adventure. I worry endlessly about him when I am not around him, I know he will be fine, but my worry-gene is in super-high gear right now. On the bright-side, he did see his Oncologist yesterday and they were impressed with how well he is maintaining his weight and that he still, *wait for it* "looks so good". We all know how much I love it when people say that. He will get a CT when he returns from FL, then will reconsider starting another round of Chemo. He got a new prescrption for a higher does pain killer, hoping this works better than the last one. It will be difficult for him to sit through his upcoming flights if it doesn't work well. Rob and Cigar, you are the two I trust the most to be his "Mom", make sure he rests and remind him to take his Creon when he eats! Love you boys much, I know Ed is really excited to hit the road tomorrow. You know you love someone when you are willing to take them to the airport at 4:30 a.m.! And love that boy I do.
So, again, not much on the disease today, as things have not changed much recently - the pain is horrific, some points being as high as a 10 - the sleep doesn't come, and when it does, his phone will always ring - he eats as much as he can, when he can - and he remains fairly positive these days even though I know he is exhausted. Our hope with the new pain meds is for him to get some much needed & solid sleep. I know the Vitamin D from the warm FL sun will be great therapy for him as well.
Oh, and Ed's All Star Dream Team has raised $1200 already for our Purple Stride event at the Cleveland Zoo on June 18th! The link to our team is at the top of the page to the right of the posts - join us if you can!
With Love & Blessings - Ed and MK
Wednesday, March 30, 2011
Team Ed fundraiser POST PONED
From Sandy H., who is on Ed's Team from the Purple Stride event at the Cleveland Zoo on 6/18/2011... If you are in the area, stop by for some lunch or a snack!
FUND RAISER DATES ARE NOW: SAT. APRIL 30, 2011 AND SAT. MAY 7, 2011
Got my temporary food handlers license application for our Team Ed fundraiser!!! Hot dogs, chips and fresh squeezed lemonade in front of the WalMart on Ridgewood Drive in Parma
FUND RAISER DATES ARE NOW: SAT. APRIL 30, 2011 AND SAT. MAY 7, 2011
Got my temporary food handlers license application for our Team Ed fundraiser!!! Hot dogs, chips and fresh squeezed lemonade in front of the WalMart on Ridgewood Drive in Parma
My Passion
So, no spell check still, so be prepared for many, many spelling errors and type-o's. It's late.
I have been alone tonight. Paige is on Spring Break and is making life much more difficult than it needs to be. Yes, I love her, but man, girl, get it together. She is at a friends and needs to thank that Mom for watching out for her. She knows not how ugly this world is yet, she will learn and unfortunately, she will probably learn the hard way.
I watched "Dear John" tonight. Writing. It is so powerful. The movie was more than I expected, and made me cry A LOT.
As I watched this movie about a young woman who had only two loves in her life, I thought, man can I relate. If you are reading this and you know me, you know that I have had very few real relationships with men. The first, the "high school sweet-heart", but oh, not so sweet. I spent 13 years with a person who manipulated me and treated me with much disrespect. But love is blind, and I needed a seeing-eye dog. From the time I was 13 till I was 26 yrs. old, I believed that he was the one, he was who I should be with, he was the one who would always own a piece of my heart and soul. Not true. Not-so-fast-forward to today, 48 years old, and in love with who is truly the only man I have known true love with. Did I have others in between, I did, but very, very few (you can count on one hand, and not include the thumb). I am as loyal as they come, when I give myself away, I give all that I have. Ed will always be the only person on this earth that knows me inside and out. Good, bad, ugly, moody, happy, loud, crabby, excited, touchy, sensative, angry, elated.... And, he accepted me in all those ways, no questions asked. We love each other in a way that is deep and special, it will never be matched again. Do I hope that when he leaves us that eventually I can move on, I do, I truly don't want to grow old alone. Will there be anyone as special as him again, never. He is an extra-ordinary human and I know in my heart I should be thankful for the time we had and the time we still have together. And I am, but I am also angry and confused and sad. Why cann't someone fix this man I love so much, why can we send men into space and build nuclear reactors and have internet and have everything we have, but no one can fix him. Someone needs to fix him. Someone needs to take away his pain. Someone needs to know that life will be awful for so many of us when he leaves. Someone needs to reassure me that there is life after death so I know that I can have him again. There is no one that can do that. There is no one that can fix him. There is no one that will ever take his place on this planet. There is only a small amount of hope right now and every day I search for someone or something to give us more hope. I am failing.
When he is gone, and all that is left are our memories, I hope it is enough to get me through what will surely be hell on earth. I watch this man suffer and I hear the pain in his voice when we cannot be together and my heart aches in ways I didn't think was possible. Thank goodness for the new people in our lives, the people from the Pancreatic Cancer Action Network, they are living this nightmare with us, they will be the people that will get me through, they will give me a reason to fight his fight and move forward, they will be the people that help find the cure, they will be an important part of my future.
Then there is family, my family is too incredible for words. My family loves this man like he has been in our family since he was a little boy. The support and love they show him is unmatched. I received a text tonight from my cousin in Atlanta letting me know his plane reservation has been made so he can be at the Cleveland Purple Stride event on June 18th at the Zoo. Then, he proceeded to let me know that my other cousin will also be there, she lives in Charlotte, NC...... There are no words. They are my heart. This is how I know, there must be a God. This is how I know, I should still pray. This is how I know that love and family are truly all that matters on this earth.
Edward James you own my heart and soul and I will never, ever give up on your fight as long as there is a breath in me. You brought me back to life, you gave me more joy and happiness in the past five years than I thought was possible. You, my sweet man, are a gift to this planet and when you are gone, the world will not be nearly as nice of a place to live. So stay please. Fight please. Call another doctor please. I need you, as do so many other female humans on this planet. You are plagued by the female of our species, we have consumed your life, we need you. You complete us! Funny, right.
Plus, you get to go fishing in two weeks....... Ugh.
I love you with all my heart and soul, and as we used to say way back when this started....... ILYSMEJD...... me xoxo
I have been alone tonight. Paige is on Spring Break and is making life much more difficult than it needs to be. Yes, I love her, but man, girl, get it together. She is at a friends and needs to thank that Mom for watching out for her. She knows not how ugly this world is yet, she will learn and unfortunately, she will probably learn the hard way.
I watched "Dear John" tonight. Writing. It is so powerful. The movie was more than I expected, and made me cry A LOT.
As I watched this movie about a young woman who had only two loves in her life, I thought, man can I relate. If you are reading this and you know me, you know that I have had very few real relationships with men. The first, the "high school sweet-heart", but oh, not so sweet. I spent 13 years with a person who manipulated me and treated me with much disrespect. But love is blind, and I needed a seeing-eye dog. From the time I was 13 till I was 26 yrs. old, I believed that he was the one, he was who I should be with, he was the one who would always own a piece of my heart and soul. Not true. Not-so-fast-forward to today, 48 years old, and in love with who is truly the only man I have known true love with. Did I have others in between, I did, but very, very few (you can count on one hand, and not include the thumb). I am as loyal as they come, when I give myself away, I give all that I have. Ed will always be the only person on this earth that knows me inside and out. Good, bad, ugly, moody, happy, loud, crabby, excited, touchy, sensative, angry, elated.... And, he accepted me in all those ways, no questions asked. We love each other in a way that is deep and special, it will never be matched again. Do I hope that when he leaves us that eventually I can move on, I do, I truly don't want to grow old alone. Will there be anyone as special as him again, never. He is an extra-ordinary human and I know in my heart I should be thankful for the time we had and the time we still have together. And I am, but I am also angry and confused and sad. Why cann't someone fix this man I love so much, why can we send men into space and build nuclear reactors and have internet and have everything we have, but no one can fix him. Someone needs to fix him. Someone needs to take away his pain. Someone needs to know that life will be awful for so many of us when he leaves. Someone needs to reassure me that there is life after death so I know that I can have him again. There is no one that can do that. There is no one that can fix him. There is no one that will ever take his place on this planet. There is only a small amount of hope right now and every day I search for someone or something to give us more hope. I am failing.
When he is gone, and all that is left are our memories, I hope it is enough to get me through what will surely be hell on earth. I watch this man suffer and I hear the pain in his voice when we cannot be together and my heart aches in ways I didn't think was possible. Thank goodness for the new people in our lives, the people from the Pancreatic Cancer Action Network, they are living this nightmare with us, they will be the people that will get me through, they will give me a reason to fight his fight and move forward, they will be the people that help find the cure, they will be an important part of my future.
Then there is family, my family is too incredible for words. My family loves this man like he has been in our family since he was a little boy. The support and love they show him is unmatched. I received a text tonight from my cousin in Atlanta letting me know his plane reservation has been made so he can be at the Cleveland Purple Stride event on June 18th at the Zoo. Then, he proceeded to let me know that my other cousin will also be there, she lives in Charlotte, NC...... There are no words. They are my heart. This is how I know, there must be a God. This is how I know, I should still pray. This is how I know that love and family are truly all that matters on this earth.
Edward James you own my heart and soul and I will never, ever give up on your fight as long as there is a breath in me. You brought me back to life, you gave me more joy and happiness in the past five years than I thought was possible. You, my sweet man, are a gift to this planet and when you are gone, the world will not be nearly as nice of a place to live. So stay please. Fight please. Call another doctor please. I need you, as do so many other female humans on this planet. You are plagued by the female of our species, we have consumed your life, we need you. You complete us! Funny, right.
Plus, you get to go fishing in two weeks....... Ugh.
I love you with all my heart and soul, and as we used to say way back when this started....... ILYSMEJD...... me xoxo
Saturday, March 19, 2011
One Year Ago Today This Nightmare Began
3/19/2010
One year ago today, Ed drove himself to the ER at SouthWest due to the blinding pain in his middle back. The pain was so intense he couldn't even see straight. And so the nightmare began. Three day's in the hospital on a clear liquid diet so the pancreas could calm down - he was diagnosed with acute (well, not so cute really) pancreatitis. He was miserable, but, hope was presented as the physicians insisted that the small mass on his pancreas was "most probably" a cyst, not a tumor. Yeah, go ahead and make the Arnold jokes, "it's not a tumor"... But in fact it was, and it was a mean one.
3/19 - Ed is admitted to SW for 3 days with acute pancreatitis. Gastroenterologist (GI) asks Ed on Sat. 3/20 what Ed's personal internist thought about the mass on his pancreas? Back in Aug. of 2009, Ed had passed a Kidney Stone and the mass was identified on the scan? Um, Ed and I just kinda looked at each other and were like "What The........." His internist never disclosed that information to Ed. So, what could have been caught in a much, much earlier stage of cancer was not. I truly hold that man responsible for giving Ed his poor outcome by not telling him about the "mass". His reponse to Ed when Ed called him from the hospital, He didn't think it was anything to worry about. I AM HERE TO TELL YOU - ANYTHING ON YOUR PANCREAS IS SOMETHING TO WORRY ABOUT! If you have a doctor tell you this, get another doctor - go to a GI guy or specialist, but fight for yourself, be your own advocate!
3/30 - Ed has an ERCP (scope down his throat to look at the tumor (oh, my bad, they still were insisting it was a cyst)... No biopsy done, just watching it for now. Surgeon looks at results, does not like what he sees and tells Ed surgery is not an option yet.
4/27 - Yes, an entire month later, ERCP #2 - this time they take fluid out of the tumor, report comes back with high levels of pre-cancerous cells in the fluid. This is really bad news.
5/14 - 2 weeks later, ERCP #3 - solid material is removed from the tumor, they test it right then and there, they do it I believe three times to be sure - I am the last person in the Lakewood Hospital atrium and it is scary as crap. Dr. comes out to tell me Ed's tumor cell marker (CA19-9) is the highest he has seen at 25,548. He has stage III pancreatic cancer that is border-line resectable (cannot have surgery) because it is attached to his 3 main arteries/veins (portal vein, superior mesenteric and celiac trunk).
On June 3, 2010 Ed started his chemo - And, since then, you guys know the rest of the story.
So, we bowl tonight for the last time this winter, which means spring is here - well, we can hope anyway!
Peace Ed & MK
PS - I don't have spell check anymore on my blog? So, it will not be as awesome as it used to be, I usually don't catch my own type-o's and I am a terrible speller.
One year ago today, Ed drove himself to the ER at SouthWest due to the blinding pain in his middle back. The pain was so intense he couldn't even see straight. And so the nightmare began. Three day's in the hospital on a clear liquid diet so the pancreas could calm down - he was diagnosed with acute (well, not so cute really) pancreatitis. He was miserable, but, hope was presented as the physicians insisted that the small mass on his pancreas was "most probably" a cyst, not a tumor. Yeah, go ahead and make the Arnold jokes, "it's not a tumor"... But in fact it was, and it was a mean one.
3/19 - Ed is admitted to SW for 3 days with acute pancreatitis. Gastroenterologist (GI) asks Ed on Sat. 3/20 what Ed's personal internist thought about the mass on his pancreas? Back in Aug. of 2009, Ed had passed a Kidney Stone and the mass was identified on the scan? Um, Ed and I just kinda looked at each other and were like "What The........." His internist never disclosed that information to Ed. So, what could have been caught in a much, much earlier stage of cancer was not. I truly hold that man responsible for giving Ed his poor outcome by not telling him about the "mass". His reponse to Ed when Ed called him from the hospital, He didn't think it was anything to worry about. I AM HERE TO TELL YOU - ANYTHING ON YOUR PANCREAS IS SOMETHING TO WORRY ABOUT! If you have a doctor tell you this, get another doctor - go to a GI guy or specialist, but fight for yourself, be your own advocate!
3/30 - Ed has an ERCP (scope down his throat to look at the tumor (oh, my bad, they still were insisting it was a cyst)... No biopsy done, just watching it for now. Surgeon looks at results, does not like what he sees and tells Ed surgery is not an option yet.
4/27 - Yes, an entire month later, ERCP #2 - this time they take fluid out of the tumor, report comes back with high levels of pre-cancerous cells in the fluid. This is really bad news.
5/14 - 2 weeks later, ERCP #3 - solid material is removed from the tumor, they test it right then and there, they do it I believe three times to be sure - I am the last person in the Lakewood Hospital atrium and it is scary as crap. Dr. comes out to tell me Ed's tumor cell marker (CA19-9) is the highest he has seen at 25,548. He has stage III pancreatic cancer that is border-line resectable (cannot have surgery) because it is attached to his 3 main arteries/veins (portal vein, superior mesenteric and celiac trunk).
On June 3, 2010 Ed started his chemo - And, since then, you guys know the rest of the story.
So, we bowl tonight for the last time this winter, which means spring is here - well, we can hope anyway!
Peace Ed & MK
PS - I don't have spell check anymore on my blog? So, it will not be as awesome as it used to be, I usually don't catch my own type-o's and I am a terrible speller.
Monday, March 14, 2011
One More Day Till The Big 48
Hi Everyone - Happy St. Patty's Day Week!
Well, It wouldn't be Ed's Birthday week without the Dickey's Annual St. Patty's day party under our belt. And, well, that it is. It was, as always, just a great party. The corned beef was awesome, the beer was cold, the Lemonaide/Vodka punch was delicious, and the great friends in attendance just made it such a fun night. It helped that Ed and I won on the side board with the number 48 - every year I buy the number that matches Ed's age he will be turning the week after the party. This is the second time in five years that we have won on that number. Thank You Side Board for paying our cab ride home. And, boy, I needed that cab ride this year. Thank you Mr. Yaegermeister (sp?)! I am traditionally not a "shot" gal, but for whatever reason, i.e. Darlene, Janet, Barb, Mel, MaryAnn, Sandi, Darcy, Lisa, Paula, JoAnn, another Jant, Melissa G..... the mood was just right! Secretly, I am glad I don't do that very often.... But, the evening was so reminicent of when we were in our twenties and didn't have a care in the world. I am blessed with the most awesome girl-friends ever. What would I do without you ladies! We may not see each other as often as we would like, but when we do - It Is Always A Party, and for that I am very grateful!
Speaking of girl-friends, I found out my very, very dear friend J had a heart-attack on Feb. 1 and she didn't want me to know because I have so many other things that I am worried about right now. I just found this out on Friday - March 11 - 1 month & 10 days later - UGH! If any one of my friends is ever sick or hurt - somebody better let me know. I love you Jay and even though praying is something I am very conflicted about right now, know you are in my thoughts continuously!
So, Edward turns 48 tomorrow! I hope my sweet man has a glorious Birthday! I love him more every day, and every day he continues to astonish me with that positive attitude. His pain levels remain quite high and it is difficult to witness. I am truly mortified that the medical community doesn't have a better solution for this. So frustrating. Ed has discontinued the Hydrogen Peroxide therapy, it made him pretty sick after a week of trying it, and he just cannot stomach the smell or taste of HP now. :( So, we are kinda back to square one. It breaks my heart, but it is always his decision / his body. He may consider trying the chemo pill later in April, after his fishing trip with his Boys to Key West... We can only hope that the pill will cause him less side effects than everything else he has tried so far. He is the Side Effect King - if there is a "possible" side effect to be had, he seems to get it.
Needless to say, I was none to pleased with his fishing trip, originally, that is. I mean, 7 days in the Key's with the Boys, come on... We have never gone away for more than 3 nights at a time, even the Super Bowl was supposed to be 4 nights, but because of the snow, turned into 3 nights. Well, Ed redemmed himself, and we are going on a "P"honey Moon in May, for 8 nights.... So Yeah! I just pray that his health will hold out and we will actually be able to take the trip. We are realistic enough to know that travel insurance is a necessity at this time, but we remain optomistic that this trip will become a reality! So, 7 night cruise with a one night stay in SanJuan after.... St. Thomas, Barbados, St. Kitt's, St. Lucia and St. Maarten.... We have a balcony room on the Veranda deck, everyone say ooooohhhhh, I am just too excited. I figure, Ed can rest as much or as little as he needs, and me, I can sit on that balcony and read for 7 days and be perfectly content.... Ocean, Sun, Book - I Am Golden! Ed was worried he would be bored on a cruise, he's never been obviously, now, I have been on 9 (I think, it might be 10), if you are bored on a cruise - it is your own fault. You can do as much or as little as you want on any given day or night... It is all up to you. I just love St. Thomas and am thrilled to share that island with Ed; St. Maarten (I know I'm spelling that wrong) is just o.k., but I have never been to the other 3 ports and am very excited ;) In 4 Weeks Ed get's fishing & the Boys, in 8 Weeks Ed get's a Phoney Moon and the Southern Carribean.... Then, what he is probably looking forward to even more, the planning of Monsoon Lagoon Fest #3 (MLF#3)... And Ironically, as I was typing this, I get a call from Janet asking if we have our date picked out yet for MLF#3 'cause they do not want to miss it! Good Stuff!
So - not too much about the disease today as Ed continues with no treatments at this time. Obviously, the other things we were looking into, i.e. Rational Therapeutics, did not pan out. It is truly like the medical community really does just write you off when it's the pancreas. So incredibly heart-breaking.
We also have our Cleveland Purple Stride Event on June 18th at the Zoo to get ready for! Remember, you can join our team or make a small donation if you'd like; Research is sorely needed and this is the group that is making that a reality! Pancan.org -or-
http://pancan.kintera.org/faf/search/searchTeamPart.asp?ievent=451976&lis=1&kntae451976=9AE95F9D3E714790A737889E1AA49F3A&supId=0&team=4063791&cj=Y
Happy Spring Everyone.... Let's go warm weather, we are READY!
Peace - Ed and MK
Well, It wouldn't be Ed's Birthday week without the Dickey's Annual St. Patty's day party under our belt. And, well, that it is. It was, as always, just a great party. The corned beef was awesome, the beer was cold, the Lemonaide/Vodka punch was delicious, and the great friends in attendance just made it such a fun night. It helped that Ed and I won on the side board with the number 48 - every year I buy the number that matches Ed's age he will be turning the week after the party. This is the second time in five years that we have won on that number. Thank You Side Board for paying our cab ride home. And, boy, I needed that cab ride this year. Thank you Mr. Yaegermeister (sp?)! I am traditionally not a "shot" gal, but for whatever reason, i.e. Darlene, Janet, Barb, Mel, MaryAnn, Sandi, Darcy, Lisa, Paula, JoAnn, another Jant, Melissa G..... the mood was just right! Secretly, I am glad I don't do that very often.... But, the evening was so reminicent of when we were in our twenties and didn't have a care in the world. I am blessed with the most awesome girl-friends ever. What would I do without you ladies! We may not see each other as often as we would like, but when we do - It Is Always A Party, and for that I am very grateful!
Speaking of girl-friends, I found out my very, very dear friend J had a heart-attack on Feb. 1 and she didn't want me to know because I have so many other things that I am worried about right now. I just found this out on Friday - March 11 - 1 month & 10 days later - UGH! If any one of my friends is ever sick or hurt - somebody better let me know. I love you Jay and even though praying is something I am very conflicted about right now, know you are in my thoughts continuously!
So, Edward turns 48 tomorrow! I hope my sweet man has a glorious Birthday! I love him more every day, and every day he continues to astonish me with that positive attitude. His pain levels remain quite high and it is difficult to witness. I am truly mortified that the medical community doesn't have a better solution for this. So frustrating. Ed has discontinued the Hydrogen Peroxide therapy, it made him pretty sick after a week of trying it, and he just cannot stomach the smell or taste of HP now. :( So, we are kinda back to square one. It breaks my heart, but it is always his decision / his body. He may consider trying the chemo pill later in April, after his fishing trip with his Boys to Key West... We can only hope that the pill will cause him less side effects than everything else he has tried so far. He is the Side Effect King - if there is a "possible" side effect to be had, he seems to get it.
Needless to say, I was none to pleased with his fishing trip, originally, that is. I mean, 7 days in the Key's with the Boys, come on... We have never gone away for more than 3 nights at a time, even the Super Bowl was supposed to be 4 nights, but because of the snow, turned into 3 nights. Well, Ed redemmed himself, and we are going on a "P"honey Moon in May, for 8 nights.... So Yeah! I just pray that his health will hold out and we will actually be able to take the trip. We are realistic enough to know that travel insurance is a necessity at this time, but we remain optomistic that this trip will become a reality! So, 7 night cruise with a one night stay in SanJuan after.... St. Thomas, Barbados, St. Kitt's, St. Lucia and St. Maarten.... We have a balcony room on the Veranda deck, everyone say ooooohhhhh, I am just too excited. I figure, Ed can rest as much or as little as he needs, and me, I can sit on that balcony and read for 7 days and be perfectly content.... Ocean, Sun, Book - I Am Golden! Ed was worried he would be bored on a cruise, he's never been obviously, now, I have been on 9 (I think, it might be 10), if you are bored on a cruise - it is your own fault. You can do as much or as little as you want on any given day or night... It is all up to you. I just love St. Thomas and am thrilled to share that island with Ed; St. Maarten (I know I'm spelling that wrong) is just o.k., but I have never been to the other 3 ports and am very excited ;) In 4 Weeks Ed get's fishing & the Boys, in 8 Weeks Ed get's a Phoney Moon and the Southern Carribean.... Then, what he is probably looking forward to even more, the planning of Monsoon Lagoon Fest #3 (MLF#3)... And Ironically, as I was typing this, I get a call from Janet asking if we have our date picked out yet for MLF#3 'cause they do not want to miss it! Good Stuff!
So - not too much about the disease today as Ed continues with no treatments at this time. Obviously, the other things we were looking into, i.e. Rational Therapeutics, did not pan out. It is truly like the medical community really does just write you off when it's the pancreas. So incredibly heart-breaking.
We also have our Cleveland Purple Stride Event on June 18th at the Zoo to get ready for! Remember, you can join our team or make a small donation if you'd like; Research is sorely needed and this is the group that is making that a reality! Pancan.org -or-
http://pancan.kintera.org/faf/search/searchTeamPart.asp?ievent=451976&lis=1&kntae451976=9AE95F9D3E714790A737889E1AA49F3A&supId=0&team=4063791&cj=Y
Happy Spring Everyone.... Let's go warm weather, we are READY!
Peace - Ed and MK
Wednesday, March 2, 2011
Follow up story in The Post
Tuesday, February 22, 2011
Hydrogen Peroxide Therapy
Hello Everyone,
It amazes me that February is almost gone... Unlike the rest of the world, I think people faced with a terminal illness and are handed the "you have this many months left" diagnosis, the beginning of a new month is not very joyful. It just means you are one month closer to that fate that has been assigned to you. I cry a lot at the end of months because of this reason. So for those of you who insist on reminding me of how strong I am, I am not. I am a normal person with a realistic handle on what is happening in our lives. You would all do the same under these circumstances, o.k., most of you.
The other saying that Ed and I just love is the infamous "but you look so good"... I noted this way back in May of 2010 - yeah, he looks good on the outside, but his insides are reeking havoc on him. You all saw him on Sat. night jumping around on stage like the rock-star he is... what you don't see is the price he pays later that night and the entire next day. When he cannot walk for more than 5 minutes without being in huge amounts of pain. He does paint a pretty picture for his adoring fans and for that, I am more proud of him than he will ever know. He doesn't complain, he doesn't get angry, he never says bad things, his faith is as strong as ever - he is an outstanding human. I will be lost for a long time, possibly forever, without him.
I think he is going to take a short break from The Band, but I have a feeling it won't last long, after all, his guitar is something that helps him cope and writing music is his gift. And, although I am not a huge fan of hard rock, I have learned to appreciate his talent immensely. So, look for a Newport & Ed Fair well Show x4 sometime in the summer, if I know him!
Now, since he has decided to take a break from the fun that is Chemotherapy, he started his own Hydrogen Peroxide therapy. I am very unsure about this, but hey, it's his body and his choice ultimately. It is a food-grade HP, not like what you buy in the drug store. He puts a few drops in an 8 oz. glass of water and down the hatch it goes. This is supposed to add more oxygen to his body, and as most of us know, cancer cannot thrive in an oxygenated environment. So, we will see if this does anything sometime in April when he goes for his next CT scans. I think he's a little nutty, but that is kinda why I love him so much, he is a little nutty.
And, yesterday, when I got home from work he left me a little vase with flowers in my bedroom with a card that read... "Just Because I Love You"... And that, my friends, is what makes him so special. No reason, just because he loves me.
Don't forget - Purple Stride Cleveland - June 18, 2011 at the Cleveland MetroParks Zoo. Join our team, we need volunteers & walkers or, if you are able to, make a small donation to our team to help fight this living, breathing monster:
http://pancan.kintera.org/faf/donorReg/donorPledge.asp?ievent=451976&lis=0&kntae451976=F241E22D30D044C39232B52B002CEF84
With Love to all,
Ed and MK
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
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
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