I have nothing profound to say to anyone, other than the usual - Life Is Short - Live It.
The emotional highs and lows of 2011 are not something that can be put into words. If you have lived cancer, you know. I was lucky, so incredibly lucky, to be wholly loved by someone and it made my life fantastic. People keep asking me why Ed and I never got married, the truth is, he would have married me if I said it was what I wanted. However, I never really felt like putting that kind of stress on our relationship while he was sick. It just wouldn't have been worth it to waste our energy. Some days I regret it - most days I don't. He used to tell me all the time that we were more married than most people with a marriage certificate and that a piece of paper doesn't really mean that much. He would say that he knew in God's eyes that we found who we were supposed to be with. How do you argue with someone who says those things to you. He loved me entirely. I loved him entirely. This was our love story - for 5 1/2 years when we were alone together we were incredibly happy. Now, that's not to say that we didn't have our moments, we did - but those revolved around our outside lives - not the two of us together as a couple. It is why we made a point of spending serious alone time together every few months so we could concentrate on just "us" and it would remind us every time of how lucky we were.
We traveled to Atlanta on three occasions, plus Los Angeles, Las Vegas, Hilton Head, Dallas, Mexico and our many trips over to PIB together - these were the incredible moments we had together. Some shared with family and friends, but so many quiet alone nights. Those are what I miss the most. Alone nights. We had the concerts, twice to see Toby Keith, we had Brad Paisley, Michael Stanley, Ritchie Blackmore and of course, Alice Cooper. We had several football games and baseball games. Ed was the first person I ever tail-gated with - I have no desire to do it again because he won't be there.
When you can spend time with someone in complete silence (yes, sometimes I don't talk, shocking) and be completely comfortable - you know it's right. We were best friends above all else. We had great, great kisses, our physical chemistry overwhelmed us both in the beginning... What an awesome gift in your mid 40's. But, once the chemo started, there was no more real physical affection, and that is where being best friends comes into play. He would get so bummed because he couldn't sleep with me because his pain levels became so intense and I missed kissing him more than anything. Being together as best friends made the other stuff not so important. He did get mad at me 'cause I was always asking him what I could do for him in those last few months - he told me I was being too "motherly" - but, hell, isn't that what women do?! When you watch someone you love suffer, you feel the need to fix it. But we all know, there was no fixing it. I was so glad he went to Key West with his boys, not just for the need for them all to be together for some real man-bonding, but they got a real taste of what he was going through. I believe that helped everyone understand how tough it was for me not to be all "Mommy Bear" with him. I never sanitized my hands so much in my life! If someone coughed, I'd be all "get away from him", I made him wash his hands and sanitize them all the time when we were in public or after he played out with Newport... By the way, where is that new CD fellas?! He got to play his music, fish, hang out with his great friends, and be very much loved through 2011. And I acquired a great support team... Never once did I feel alone in our battle. Because, again, friendship is truly what makes our lives great - and when you are really lucky - your family is not only your family, but your family members are also friends! Ed was loved by so, so many and Ed will be missed always.
When we went to hospice in August, we both knew that it was the end and we both knew how lucky we were to have each other. Nothing was left unsaid. I will never love anyone, other than my child, that much again and that makes me sad. It also makes me happy to know that I was one of the lucky ones to experience the real thing, even if it only lasted a brief time.
So, as we close 2011, I say to you - be good to your loved ones, it is really the most important thing.
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
Friday, December 30, 2011
Wednesday, December 21, 2011
PC needs to be stopped
Here is a blog everyone should read that has read ours:
http://merimeejourney.blogspot.com/
This family's journey with PC makes what Ed and I dealt with look like a walk in the park.
Pray for them as you prayed for us. You will cry, you will be inspired, you will leave your computer knowing how truly lucky you are if your family is healthy.
Time with your loved ones - it is truly the most important thing on this planet.
http://merimeejourney.blogspot.com/
This family's journey with PC makes what Ed and I dealt with look like a walk in the park.
Pray for them as you prayed for us. You will cry, you will be inspired, you will leave your computer knowing how truly lucky you are if your family is healthy.
Time with your loved ones - it is truly the most important thing on this planet.
Monday, December 19, 2011
Christmas Week
So, it's the week of Christmas - it's been 4 months and I am doing surprisingly well. After posting about "letting go", it really makes a big difference. I think I only cried a few times this week, mostly because of certain Christmas songs. I know mass will be difficult on Saturday - but I'll cross that bridge when I get to it.
The kid had another weekend of one basketball game and two soccer games; She had 2 - three pointers again this week in b-ball, that always gives her a boost in the ol' ego department. She played tough soccer on Sunday as well. Her body is paying the price today. She got nailed pretty good - but she also nailed a few players pretty hard as well. Really playing some tough defense. And, a Christmas miracle occurred - she stayed home Sat. all day & night and even watched a movie with me. Truly a blast from the past. I guess you could say we are both finding our "new normal". It was nice to have her home. She continues to do really well in her new school program and for that I am thankful. I am surprised about how much drama she still seems to encounter from girls she doesn't ever see anymore - man, ladies, get a life. Geesh. She's been so pleasant (I know that typing these words - I'm changing it already). Well, this could be because she wants awesome Christmas gifts - yeah, like I'd ever really NOT get her awesome gifts. I rock as Santa.
Next on the ol' kid agenda will be her temporary license and driving school - UGH. I am not ready for this. I'm completely freaking out - I so don't want her to drive. But, you know, it has to happen. This is the area where Ed would have been awesome - he's already been through it and he was so calm and rational that he would have been a huge help to her in this capacity. You know he is just laughing his ass of at me freaking out.
So, anyway, family coming home from the ATL and Charlotte on Thursday - Yeah. Charles D. from Los Angeles will also be in town and I will have the honor of delivering Ed's Gibson to him on Friday. I know this will make both Chuck and Ed happy - it will be in the good hands of his great friend to play from now on.
So, Merry Christmas, Happy New Year - or- Happy Chrismahannakwanzavis - what ever you celebrate, I hope it's great.
mk
The kid had another weekend of one basketball game and two soccer games; She had 2 - three pointers again this week in b-ball, that always gives her a boost in the ol' ego department. She played tough soccer on Sunday as well. Her body is paying the price today. She got nailed pretty good - but she also nailed a few players pretty hard as well. Really playing some tough defense. And, a Christmas miracle occurred - she stayed home Sat. all day & night and even watched a movie with me. Truly a blast from the past. I guess you could say we are both finding our "new normal". It was nice to have her home. She continues to do really well in her new school program and for that I am thankful. I am surprised about how much drama she still seems to encounter from girls she doesn't ever see anymore - man, ladies, get a life. Geesh. She's been so pleasant (I know that typing these words - I'm changing it already). Well, this could be because she wants awesome Christmas gifts - yeah, like I'd ever really NOT get her awesome gifts. I rock as Santa.
Next on the ol' kid agenda will be her temporary license and driving school - UGH. I am not ready for this. I'm completely freaking out - I so don't want her to drive. But, you know, it has to happen. This is the area where Ed would have been awesome - he's already been through it and he was so calm and rational that he would have been a huge help to her in this capacity. You know he is just laughing his ass of at me freaking out.
So, anyway, family coming home from the ATL and Charlotte on Thursday - Yeah. Charles D. from Los Angeles will also be in town and I will have the honor of delivering Ed's Gibson to him on Friday. I know this will make both Chuck and Ed happy - it will be in the good hands of his great friend to play from now on.
So, Merry Christmas, Happy New Year - or- Happy Chrismahannakwanzavis - what ever you celebrate, I hope it's great.
mk
Monday, December 12, 2011
Don't like it - Don't read it
Dear Other Bitter Spiteful People (as I, myself, have been one lately) - you don't like my blog - don't read it. Thank You and have a lovely Christmas Season.
After this weekend - I've decided that I won't continue to be this way. It IS entirely too ugly and I have come to the conclusion that it would really disappoint Ed and that from yesterday moving forward.... I'm going to be happy. 'Cause that's what he wanted.
Watch, I'll change this a few more times. See - 12/14 - Changing It.... Relief - I feel relief at last... I have finally let go... Man, does this feel good. I think I have caught up on much needed sleep and I don't have to "try" anymore.... Forward movement now. So, I may not have prayed recently - but, I believe, all of yours have paid off. So Thank You. MK
After this weekend - I've decided that I won't continue to be this way. It IS entirely too ugly and I have come to the conclusion that it would really disappoint Ed and that from yesterday moving forward.... I'm going to be happy. 'Cause that's what he wanted.
Watch, I'll change this a few more times. See - 12/14 - Changing It.... Relief - I feel relief at last... I have finally let go... Man, does this feel good. I think I have caught up on much needed sleep and I don't have to "try" anymore.... Forward movement now. So, I may not have prayed recently - but, I believe, all of yours have paid off. So Thank You. MK
Tuesday, December 6, 2011
12.6.11
Well, less than 20 days till Christmas. I have not purchased one item, not one. It is pretty tragic actually. I have not put up my tree yet either - just pathetic.
So, Christmas.... What is there to say. I cannot go into a church without losing it. Christmas Eve mass is going to be completely embarrassing because I know I will just weep. I would always get very emotional at Christmas anyway, now I'm a complete basket case. I really thought that at the 4 month mark I'd really start to bounce back, but yeah, that ain't happening. Ugh.
My child is at least doing better now that I have yanked her out of the hell that was her High School. She has been in a special program for one week now and it seems to be going well. Man are girls mean these days, jeesh. I mean, girls have always been mean, but it's at an entirely different level now-a-days. Social media doesn't help either. She just has to find her part-time job and I think she will really begin to grow in a positive direction. I think Ed would have liked this change for her. He was always on her "team" and really did see the positive attributes of that child. She misses him so much - as, obviously, we all do. Ed's "boys" and their wives have done a great job taking care of me these past months, and for that, I am thankful. I had the incredible need to be around people who knew him best and they let me. I was so sad when I did not get to go through his personal effects, it broke my heart in ways that are not even explainable (I'm sure there are several people who will find joy in that). As time passes, and I've come to accept the fact that I will not get the personal items I made for him, which he treasured, I realize that I did get the best thing of all - I got incredible friendships, and that is worth more than any Christmas calendar or card or book or goofy t-shirt or jacket or whatever other material items I seemed to be missing. I have his words from his e-mails and I have great, great friends. I have acquired two new "bff's" actually.... Darcy and Toni - what would I do without you ladies for even one nano-second, I cannot even begin to imagine. Then there are the rest of them.... Rob and John, Wendy & Michael, Nano & Greg, Jean & Mark, Greg & Dawn, Johnny G & Melissa.... You are forever in my heart. Then, there are their children - I love each of them as well. Oh, how each of you have become such an important part of my life. Please know, I realize I have been quite difficult these past few months - but also know I love you all and wish each and everyone of you, and your families, a very Happy & Healthy Holiday Season.
So, as I try and move forward, I must remind myself every single morning that Ed made me a better person and in turn I will try and continue to be a better person. It's hard. It's harder than anything I have ever done. With the child preparing for her Confirmation, being in church will once again be something I begin to do regularly, and with any luck, and by the Grace of God, maybe - just maybe - I will be able to stop crying every time I step foot in church. I told her, her confirmation name should be "Edwina" - ha - she didn't agree.... shocking! But, I promised Edward that I would make her complete her Sacraments and that I will do.
Ed had several nick names, I guess the most commonly known was Eddie Luv or Dr. Luv... but I have started to refer to my child as the one he thought was pretty funny - Demon Seed. Some days I believe she was made with an actual Demon Seed.... AND THEN, then there are days like yesterday... Cleaned her room, emptied her garbage, cleaned up her bathroom and, the icing on the cake, cleaned the fish bowl. I refuse to clean the fish bowl - refuse. I told her no goldfish were welcome in my home, then in July of 2010 she just had to bring one home from the Strongsville Home Days. Um. Not happy. And the damn thing is still alive - WTF people. However, at that time, Ed was on a mission to keep the stupid fish living... He did a great job. I mean, seriously, who has a carnival fish for 18 months?! But, the Demon Seed really stepped up yesterday and did what she needed to do. For that, I was grateful!
To my incredible family - You all know you are the bomb, what would I do without your unconditional love and support - who would help me drive the Demon Seed to and from every corner of Strongsville?! Thank You.... and I love you all dearly.
So, if anyone is still reading this thing - I wish you all a happy, and most importantly, a Healthy Holiday Season and New Year.
MK........... and always, always, Edward James
And if you are looking for volunteer opportunities in the New Year - knowitfightitendit.org... Join our fight, won't you!
So, Christmas.... What is there to say. I cannot go into a church without losing it. Christmas Eve mass is going to be completely embarrassing because I know I will just weep. I would always get very emotional at Christmas anyway, now I'm a complete basket case. I really thought that at the 4 month mark I'd really start to bounce back, but yeah, that ain't happening. Ugh.
My child is at least doing better now that I have yanked her out of the hell that was her High School. She has been in a special program for one week now and it seems to be going well. Man are girls mean these days, jeesh. I mean, girls have always been mean, but it's at an entirely different level now-a-days. Social media doesn't help either. She just has to find her part-time job and I think she will really begin to grow in a positive direction. I think Ed would have liked this change for her. He was always on her "team" and really did see the positive attributes of that child. She misses him so much - as, obviously, we all do. Ed's "boys" and their wives have done a great job taking care of me these past months, and for that, I am thankful. I had the incredible need to be around people who knew him best and they let me. I was so sad when I did not get to go through his personal effects, it broke my heart in ways that are not even explainable (I'm sure there are several people who will find joy in that). As time passes, and I've come to accept the fact that I will not get the personal items I made for him, which he treasured, I realize that I did get the best thing of all - I got incredible friendships, and that is worth more than any Christmas calendar or card or book or goofy t-shirt or jacket or whatever other material items I seemed to be missing. I have his words from his e-mails and I have great, great friends. I have acquired two new "bff's" actually.... Darcy and Toni - what would I do without you ladies for even one nano-second, I cannot even begin to imagine. Then there are the rest of them.... Rob and John, Wendy & Michael, Nano & Greg, Jean & Mark, Greg & Dawn, Johnny G & Melissa.... You are forever in my heart. Then, there are their children - I love each of them as well. Oh, how each of you have become such an important part of my life. Please know, I realize I have been quite difficult these past few months - but also know I love you all and wish each and everyone of you, and your families, a very Happy & Healthy Holiday Season.
So, as I try and move forward, I must remind myself every single morning that Ed made me a better person and in turn I will try and continue to be a better person. It's hard. It's harder than anything I have ever done. With the child preparing for her Confirmation, being in church will once again be something I begin to do regularly, and with any luck, and by the Grace of God, maybe - just maybe - I will be able to stop crying every time I step foot in church. I told her, her confirmation name should be "Edwina" - ha - she didn't agree.... shocking! But, I promised Edward that I would make her complete her Sacraments and that I will do.
Ed had several nick names, I guess the most commonly known was Eddie Luv or Dr. Luv... but I have started to refer to my child as the one he thought was pretty funny - Demon Seed. Some days I believe she was made with an actual Demon Seed.... AND THEN, then there are days like yesterday... Cleaned her room, emptied her garbage, cleaned up her bathroom and, the icing on the cake, cleaned the fish bowl. I refuse to clean the fish bowl - refuse. I told her no goldfish were welcome in my home, then in July of 2010 she just had to bring one home from the Strongsville Home Days. Um. Not happy. And the damn thing is still alive - WTF people. However, at that time, Ed was on a mission to keep the stupid fish living... He did a great job. I mean, seriously, who has a carnival fish for 18 months?! But, the Demon Seed really stepped up yesterday and did what she needed to do. For that, I was grateful!
To my incredible family - You all know you are the bomb, what would I do without your unconditional love and support - who would help me drive the Demon Seed to and from every corner of Strongsville?! Thank You.... and I love you all dearly.
So, if anyone is still reading this thing - I wish you all a happy, and most importantly, a Healthy Holiday Season and New Year.
MK........... and always, always, Edward James
And if you are looking for volunteer opportunities in the New Year - knowitfightitendit.org... Join our fight, won't you!
Tuesday, November 29, 2011
So, Thanksgiving
So, like I stated above, I hate to admit it and I hate to sound so bitter - but I really wasn't feeling very "thankful" this Thanksgiving. Although being with the closest people to me for 4 days in the ATL was a great break from reality! And, anytime I can have cocktails at El Azteca in the ATL, it's all good. I have some very fond memories of Ed there!
My teenager has decided that it is everyone else's fault but her own that she needs to leave her high-school... Hmmmm, no one else made the bad choices for you - you are the only one that has the power to change what you do?! Man, wake up already and take some responsibility for yourself. It has just made an incredibly difficult time almost completely unbearable. The drama and ugliness she brings home is unreal. Hopefully this change will help her grow up and see that she needs to get it together or her future will be pretty pathetic and she will wind up in a job that she hates just to pay the bills (I speak from experience). Help yourself while you're young and you can make changes.
Other than that - I just try to get through each day without having a mental break down. And now, bring on the rest of the Holidays.... Not in the least excited about any of it.
When the one person in your life that made everything bearable is gone, nothing really seems to matter anymore. He truly filled me with joy and made me laugh every single day we were together. Laughing is not something I do very often anymore - I just "am" now. If anyone would have told me that I could be this incredibly sad, I would not have believed it for a minute. But sad I am, all the time.
And for these reasons - I tend not to update the blog very much. Who wants to read this depressing stuff, no one really, and I get that.
There is no more "we", just an "I" and that sucks, plain and simple.
So - if you are lucky enough to be a "we" with that exact right person, do not - I repeat - Do Not take it for granted, it could be gone before you know it. And, if you are in a miserable situation - change it! Don't try to be honorable, be Happy! Ed had regrets, big ones, we discussed this a lot in the end - he would tell you all - Be Happy even it means not "doing the right thing" because that will just get you screwed in the end.
So - Be Happy everyone and make changes in 2012. I know I'm going to try 'cause it's all there is left to do.
My teenager has decided that it is everyone else's fault but her own that she needs to leave her high-school... Hmmmm, no one else made the bad choices for you - you are the only one that has the power to change what you do?! Man, wake up already and take some responsibility for yourself. It has just made an incredibly difficult time almost completely unbearable. The drama and ugliness she brings home is unreal. Hopefully this change will help her grow up and see that she needs to get it together or her future will be pretty pathetic and she will wind up in a job that she hates just to pay the bills (I speak from experience). Help yourself while you're young and you can make changes.
Other than that - I just try to get through each day without having a mental break down. And now, bring on the rest of the Holidays.... Not in the least excited about any of it.
When the one person in your life that made everything bearable is gone, nothing really seems to matter anymore. He truly filled me with joy and made me laugh every single day we were together. Laughing is not something I do very often anymore - I just "am" now. If anyone would have told me that I could be this incredibly sad, I would not have believed it for a minute. But sad I am, all the time.
And for these reasons - I tend not to update the blog very much. Who wants to read this depressing stuff, no one really, and I get that.
There is no more "we", just an "I" and that sucks, plain and simple.
So - if you are lucky enough to be a "we" with that exact right person, do not - I repeat - Do Not take it for granted, it could be gone before you know it. And, if you are in a miserable situation - change it! Don't try to be honorable, be Happy! Ed had regrets, big ones, we discussed this a lot in the end - he would tell you all - Be Happy even it means not "doing the right thing" because that will just get you screwed in the end.
So - Be Happy everyone and make changes in 2012. I know I'm going to try 'cause it's all there is left to do.
Friday, November 18, 2011
Festive Friday Q104
Shout out to the entire gang at Q104 for letting me and Megan, our event coordinator for the Pancreatic Cancer Action Network, Cleveland Affiliate, join the show this morning. Everyone down at Q104 could not have been nicer and it was a very COOL experience!
It is one of those experiences that is nothing like what you expect... You sit in a very small room and there are only a few people in the Festive Friday audience - I always thought that it was a room with about 25 people in the audience, it's more like 8 - who knew?! We got treated to Angelo's Pizza from Lakewood - just incredible. They actually have a mashed potato pizza, crazy good stuff! One of the Q104 staff members shared with us that her 80 year old Grandma was just married after beating Pancreatic Cancer - it was a very uplifting story and just goes to show ya, you are never too old to find true love! Red Beard Ben is adorable, Megan wanted to take him home in her pocket. Allan Fee and Katherine Boyd are great hosts and make you feel right at home. Thank You Q104! Cleveland Rocks.
Megan did an outstanding job promoting PurpleLight for this coming Sunday (11.20.11); praying the rain will not put a "damper" on our event.
Edward James, you remain in my heart and mind every second of every day - I miss you always.
I cannot believe we are less than one week away from Thanksgiving, your favorite holiday of all! We will celebrate your life and your passion to live up until the very end my love. You are my inspiration to do good things.
Wishing all of you a healthy and happy Holiday Season... hard to believe it's upon us once again.
Peace - MK
It is one of those experiences that is nothing like what you expect... You sit in a very small room and there are only a few people in the Festive Friday audience - I always thought that it was a room with about 25 people in the audience, it's more like 8 - who knew?! We got treated to Angelo's Pizza from Lakewood - just incredible. They actually have a mashed potato pizza, crazy good stuff! One of the Q104 staff members shared with us that her 80 year old Grandma was just married after beating Pancreatic Cancer - it was a very uplifting story and just goes to show ya, you are never too old to find true love! Red Beard Ben is adorable, Megan wanted to take him home in her pocket. Allan Fee and Katherine Boyd are great hosts and make you feel right at home. Thank You Q104! Cleveland Rocks.
Megan did an outstanding job promoting PurpleLight for this coming Sunday (11.20.11); praying the rain will not put a "damper" on our event.
Edward James, you remain in my heart and mind every second of every day - I miss you always.
I cannot believe we are less than one week away from Thanksgiving, your favorite holiday of all! We will celebrate your life and your passion to live up until the very end my love. You are my inspiration to do good things.
Wishing all of you a healthy and happy Holiday Season... hard to believe it's upon us once again.
Peace - MK
Monday, November 14, 2011
Thank You Cleveland Plain Dealer
http://blog.cleveland.com/metro/2011/11/ed_demyan_the_terminally_ill_b.html
I hope you all enjoy this follow-up article in today's Clevleand Plain Dealer. Ed would be proud that light continues to be shed on this disease that needs so much attention.
Please join us for PurpleLight this coming Sunday, 11.20.2011 to honor the survivors, those who continue to battle and those we have lost.
PurpleLight.Org - register today and let's turn the country purple on Sunday!
I hope you all enjoy this follow-up article in today's Clevleand Plain Dealer. Ed would be proud that light continues to be shed on this disease that needs so much attention.
Please join us for PurpleLight this coming Sunday, 11.20.2011 to honor the survivors, those who continue to battle and those we have lost.
PurpleLight.Org - register today and let's turn the country purple on Sunday!
Tuesday, November 1, 2011
11.11.2010 Email - Funny
From: Mackulin, Mary Kaye Sent: Thursday, November 11, 2010 10:23 AM
To: Ed Demyan
Subject: Good Morning
Feeling OK. I got this cancer thing going on and its a little bothersome. ;p
To: Ed Demyan
Subject: Good Morning
Good Morning... How are you feeling today? ILY... xoxo me
-----Original Message-----
From: Ed Demyan Sent: Thursday, November 11, 2010 10:55 AM
To: Mackulin, Mary Kaye
Subject: RE: Good Morning
From: Ed Demyan Sent: Thursday, November 11, 2010 10:55 AM
To: Mackulin, Mary Kaye
Subject: RE: Good Morning
Feeling OK. I got this cancer thing going on and its a little bothersome. ;pFrom: Mackulin, Mary Kaye Sent: Thursday, November 11, 2010 10:58 AM
To: Ed Demyan
Subject: RE: Good Morning
To: Ed Demyan
Subject: RE: Good Morning
Aren't you just the comedian this morning... xo
-----Original Message-----
From: Ed Demyan Sent: Thursday, November 11, 2010 11:05 AM
To: Mackulin, Mary Kaye
Subject: RE: Good Morning
From: Ed Demyan Sent: Thursday, November 11, 2010 11:05 AM
To: Mackulin, Mary Kaye
Subject: RE: Good Morning
That's me!!! XOXOXOXOXOXO
You are my soul Mr. EJD and I will love you my entire life. This Month Is For You my sweet, sweet man. I hope you are happy where ever you are! Rob burned the new Alice CD for me - the first song is us, entirely. I am so bitter and angry these days and I hope it ends soon - I absolutely hate wasting any energy on negative feelings, but it is just so intense right now. I have not felt this angry in such a long time, and now I feel it every single day. I know this would make you unhappy with me, and I promise you I will try and get over it - I'm a walking open wound right now and I just can't seem to get passed it as quickly as I'd like. For you I will try. ILYSM and MYSM.... me xoxoxo
Friday, October 28, 2011
Purple Light 11.20.11
Purple Light - November 20, 2011
volunteer for progress during National pancreatic cancer awareness month in November
All members of the community are invited to participate in the following activities during National Pancreatic Cancer Awareness Month:
- PurpleLight - On November 20, 2011 the Cleveland Affiliate of the Pancreatic Cancer Action Network will join thousands of people across the country to participate in one of over 45 PurpleLight Vigil for Hope events. The candlelight vigil will honor those who have fought pancreatic cancer and celebrate the survivors, while raising community awareness about the disease. To register, and submit the name you would like read during the ceremony, please visit www.purplelight.org
- Tempur-Pedic® 2011 Hugs Back Campaign: Feel the Difference. Make a Difference. - During the month of November Tempur-Pedic has committed to contribute $10 to the Pancreatic Cancer Action Network for every individual who tests a Tempur-Pedic mattress at a participating authorized retailer. To find a retailer visit www.tempurpedic.com
- Z Gallerie Awareness Month Shopping Weekend – In memory of Shirley Zeiden, mother of the company’s founders, Z Gallerie will donate 10 percent sales from November 5 through November 7. Shop or find a store near you at www.zgallerie.com.
74 percent of patients die within the first year of diagnosis. The survival rate has not substantially improved in over forty years because early detection tools and effective treatments have yet to be developed. Despite these sobering statistics, just two percent of the National Cancer Institute’s (NCI) federal research funding is allocated to pancreatic cancer. Once enacted and fully funded, Pancreatic Cancer Research and Education Act (S. 362/ H.R. 733) will ensure that the NCI develops a long-term comprehensive strategic plan for developing early diagnostics and treatment options that will increase the survival rate for pancreatic cancer patients.
Pancreatic cancer has claimed the lives of many public figures, including actor Patrick Swayze, Carnegie Mellon University Professor and author of the Last Lecture, Dr. Randy Pausch, actor Michael Landon, and opera tenor Luciano Pavarotti.
To learn more about the Pancreatic Cancer Action Network and the Cleveland Affiliate visit:
About the Pancreatic Cancer Action Network
The Pancreatic Cancer Action Network is the national organization creating hope in a comprehensive way through research, patient support, community outreach and advocacy for a cure. The organization is leading the way to increase the survival rate for people diagnosed with this devastating disease through a bold initiative —The Vision of Progress: Double the Pancreatic Cancer Survival Rate by 2020. Together, we can know, fight and end pancreatic cancer by intensifying our efforts to heighten awareness, raise funds for comprehensive private research, and advocate for dedicated federal research to advance early diagnostics, better treatments and increase chances of survival.
Contact:
Mary Kaye Mackulin
Media Rep – Cleveland AffiliatePancreatic Cancer Action Network
e-mail: mmackulin@pancanvolunteer.org
Tuesday, October 25, 2011
4s Is 4 Steve - Check This Out!!!
Following the passion of Steve Jobs to change the world, we hope to do our small part to better the lives of others, in memory of an innovator. |
As the world pays tribute to the late Steve Jobs in many different ways, two men with a special link to Apple have gone above and beyond in remembering Jobs, and are taking steps to raise money for local and national charities while paying tribute to one of the world’s greatest innovators. Their goal is to print and sell ’4S is 4Steve’ t-shirts featuring an inspiring quote from Steve Jobs, where ...100% of the profits will go to deserving causes: for research, patient support, community outreach and advocacy for a cure of pancreatic cancer by donating profits to the Pancreatic Cancer Action Network and to raise funds to purchase and donate Apple iPads for the Golisano Children’s Museum of Naples, in hopes to encourage exploration and discovery through innovative technology for the children of SW Florida. |
| Website |
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Friday, October 21, 2011
Sat. 10-1-11 on Put-In-Bay
So, Barbie, Janet and I wake up on a windy Saturday morning on Put-In-Bay, at least it wasn't raining! We sat in bed and talked for probably three hours before we actually got out of bed & got going - it was like being teenagers. We laughed so much about the things we've been through and what we are all currently going through.
Our mission for the day - get Ed's ashes (very small amounts mind you) sprinkled in places that he would love! We did that two times on our walk downtown - great spots!
We headed out for "brunch" at Mossbacks - Ed's favorite restaurant on the Bay. I made the girls taste the Cajun spiced Walleye Nuggets that he loved so much - they were awesome, as always. We couldn't get the booth that Ed proposed in, but we got the one right behind it, close enough. After lunch we headed over to The Round House (TRH) - again, Ed's fave on the island. We started our cocktails off at right about 12 Noon with Rum & Coke to honor that wonderful man. Believe me, one R&C was plenty - as all three of us gal's are beer drinkers! Thank goodness that TRH has a small outside bar that serves 16 oz. Lite's in the aluminum bottles - we knew that if we were in it for the long haul that day - draft beer was not an option so early in the afternoon. The outside bartenders name - "Eddie" (I do have a picture of his little information board he had set up - too funny); So Eddie's little board noted that his favorite saying was "Living The Dream", I just about pee'd myself - If you would ever ask Ed how he was doing, he would always say "Just LTD - Living The Dream". I was so tickled! I will try and get that picture up of bartender Eddie's dry erase board, it was so my Ed.
So, after TRH, I think we headed back to the hotel room to throw back a few free beers, do a shot of Jaeger and plan a little afternoon fun at the official Fall Ball location. As we sat in the room, we continued just talking up a storm, at this point we were laughing, crying, laughing, crying - you get the picture. We get a cab and head over to Fall Ball.... (but not until Janet gives us each our glow rings & glow gloves for the evening hours of our adventure) We arrive at Fall Ball and we realize that Barbie is sneaking some bottle beer into this event, we are cracking up, because this event is free for us and you can have all the beer you want (draft yes, but free none the less). I think we are the only morons to ever sneak beer into an event where you get free beer! There was live music and just the best general overall vibe of "fun on the Bay". This was very much like the vibe you would get at Lonz's back in the day (oh, how I miss that place). Everyone was talking to everyone and just having a blast. I mean, where else do you just randomly take jello shots from complete strangers - no where, but on PIB, the same rules never apply! Near the end of the event, Barbie decides to show us some of her stripper-pole moves - on a pole holding up one of the big tents - Not a good idea; Janet and I tried to talk her out of it - but no, she starts to spin around the pole and one of the volunteers comes running at her, and yelling... NNNNooooooo.... Janet and I just kind of walked away shaking our heads & laughing our asses off - again! Only Barbie people, only Barbie. And, that is why I love her.
So, we head back into town and I believe we hit TRH again (where Barbie traded her glow ring for three beers - gotta love her), then Mr. Ed's (how appropriate) for a little while, the Fish Bowl next, nice & quiet and we had the run of the jukebox... that's a rare thing on the Bay, but with the weather being nasty, the island was still pretty quiet on Sat. I abandoned the girls for a little while and ran over to the Beer Barrel to see Jennifer & Phil, say Hello and listen to a little more Brother Trouble!!! Man they rock, I just love those boys... when they make it BIG, it will be very cool. So, I start heading back to the FB, and realize I snagged poor Jen's jacket - um, drinking for almost 12 hours makes you do strange & random things, I ran that back to her. Now, I can head back to the Fish Bowl, after a quick stop in the park to finish my sprinkling of ashes, it was pitch black & a little windy, so off he went - forever in the park & forever in the lake he loved! Janet calls my cell and was like, where are you - I said - look right in front of you and I waved my glow ring at her and we were all hooked up again.
After that, it was around 11:30 p.m., so we headed over to Cameo Pizza to finish our marathon day of partying - and it was a GREAT day. I was sitting with Janet chit-chatting, while for some strange reason, Barbie was on the other side of the waiting area, and my phone rings?! I'm like, who the hell is calling me at 11:30 p.m. on a Sat. night - checked the screen, my ex - WTF?! At least he hung up after one ring & I didn't have to answer it or listen to a voice mail. I mean, I am o.k. with this guy, but really, I don't need to talk to you that often, it's all good - leave the past in the past man. I put my phone away and go to grab my pizza to finish it, and it's gone?! I'm like, what happened to the rest of my pizza - well, turns out, when Barbie is hammered, she is a food stealer, she walked over to Janet & myself and while I was preoccupied, she ate my 'zza - again, only Barbie!
We walked back to our room - and hit the hay! Both extremely tired & more than a little loaded. By far, on of my best days ever to honor that man I love so much.
Hangover Sunday - oh my yes! Not a nightmare hangover, just a mini one thank goodness cause lord knows we had to get back on the Jet and get home to reality. So, good-bye PIB until next year. Seeing that Fall Ball was such a blast, one never knows, I may have to see about coming over in April and do the Spring Fling. I just Love Put-In-Bay. Ed just Loved Put-In-Bay. It will always have him now.
Till next time - Peace.
Our mission for the day - get Ed's ashes (very small amounts mind you) sprinkled in places that he would love! We did that two times on our walk downtown - great spots!
We headed out for "brunch" at Mossbacks - Ed's favorite restaurant on the Bay. I made the girls taste the Cajun spiced Walleye Nuggets that he loved so much - they were awesome, as always. We couldn't get the booth that Ed proposed in, but we got the one right behind it, close enough. After lunch we headed over to The Round House (TRH) - again, Ed's fave on the island. We started our cocktails off at right about 12 Noon with Rum & Coke to honor that wonderful man. Believe me, one R&C was plenty - as all three of us gal's are beer drinkers! Thank goodness that TRH has a small outside bar that serves 16 oz. Lite's in the aluminum bottles - we knew that if we were in it for the long haul that day - draft beer was not an option so early in the afternoon. The outside bartenders name - "Eddie" (I do have a picture of his little information board he had set up - too funny); So Eddie's little board noted that his favorite saying was "Living The Dream", I just about pee'd myself - If you would ever ask Ed how he was doing, he would always say "Just LTD - Living The Dream". I was so tickled! I will try and get that picture up of bartender Eddie's dry erase board, it was so my Ed.
So, after TRH, I think we headed back to the hotel room to throw back a few free beers, do a shot of Jaeger and plan a little afternoon fun at the official Fall Ball location. As we sat in the room, we continued just talking up a storm, at this point we were laughing, crying, laughing, crying - you get the picture. We get a cab and head over to Fall Ball.... (but not until Janet gives us each our glow rings & glow gloves for the evening hours of our adventure) We arrive at Fall Ball and we realize that Barbie is sneaking some bottle beer into this event, we are cracking up, because this event is free for us and you can have all the beer you want (draft yes, but free none the less). I think we are the only morons to ever sneak beer into an event where you get free beer! There was live music and just the best general overall vibe of "fun on the Bay". This was very much like the vibe you would get at Lonz's back in the day (oh, how I miss that place). Everyone was talking to everyone and just having a blast. I mean, where else do you just randomly take jello shots from complete strangers - no where, but on PIB, the same rules never apply! Near the end of the event, Barbie decides to show us some of her stripper-pole moves - on a pole holding up one of the big tents - Not a good idea; Janet and I tried to talk her out of it - but no, she starts to spin around the pole and one of the volunteers comes running at her, and yelling... NNNNooooooo.... Janet and I just kind of walked away shaking our heads & laughing our asses off - again! Only Barbie people, only Barbie. And, that is why I love her.
So, we head back into town and I believe we hit TRH again (where Barbie traded her glow ring for three beers - gotta love her), then Mr. Ed's (how appropriate) for a little while, the Fish Bowl next, nice & quiet and we had the run of the jukebox... that's a rare thing on the Bay, but with the weather being nasty, the island was still pretty quiet on Sat. I abandoned the girls for a little while and ran over to the Beer Barrel to see Jennifer & Phil, say Hello and listen to a little more Brother Trouble!!! Man they rock, I just love those boys... when they make it BIG, it will be very cool. So, I start heading back to the FB, and realize I snagged poor Jen's jacket - um, drinking for almost 12 hours makes you do strange & random things, I ran that back to her. Now, I can head back to the Fish Bowl, after a quick stop in the park to finish my sprinkling of ashes, it was pitch black & a little windy, so off he went - forever in the park & forever in the lake he loved! Janet calls my cell and was like, where are you - I said - look right in front of you and I waved my glow ring at her and we were all hooked up again.
After that, it was around 11:30 p.m., so we headed over to Cameo Pizza to finish our marathon day of partying - and it was a GREAT day. I was sitting with Janet chit-chatting, while for some strange reason, Barbie was on the other side of the waiting area, and my phone rings?! I'm like, who the hell is calling me at 11:30 p.m. on a Sat. night - checked the screen, my ex - WTF?! At least he hung up after one ring & I didn't have to answer it or listen to a voice mail. I mean, I am o.k. with this guy, but really, I don't need to talk to you that often, it's all good - leave the past in the past man. I put my phone away and go to grab my pizza to finish it, and it's gone?! I'm like, what happened to the rest of my pizza - well, turns out, when Barbie is hammered, she is a food stealer, she walked over to Janet & myself and while I was preoccupied, she ate my 'zza - again, only Barbie!
We walked back to our room - and hit the hay! Both extremely tired & more than a little loaded. By far, on of my best days ever to honor that man I love so much.
Hangover Sunday - oh my yes! Not a nightmare hangover, just a mini one thank goodness cause lord knows we had to get back on the Jet and get home to reality. So, good-bye PIB until next year. Seeing that Fall Ball was such a blast, one never knows, I may have to see about coming over in April and do the Spring Fling. I just Love Put-In-Bay. Ed just Loved Put-In-Bay. It will always have him now.
Till next time - Peace.
Monday, October 17, 2011
Two Months Today
Hard to believe it's been two months since we lost our beloved Edward. I am in more pain now than I was those first few weeks. I suppose like so many things in this life, it gets worse before it gets better.
October has brought many highlights, however.
There was the incredible, but frightening, trip over to Put-In-Bay with Janet & Barb.
- This was the ferry ride from hell on the Jet Express; I guess it was a good thing we caught that 7:15 p.m. on Frid. 9/30, because they cancelled the rest of the trips that night. Barb was hanging on to Janet's left knee and I had the right sleeve of her jacket in a death grip! We were literally coming out of our seats about 8-10 inches with each wave. The sound of the waves hitting the ferry was also extremely frightening.
- So we get to PIB and we are standing in the parking lot of the Jet waiting for a taxi and Barbie cracks open a cold one - I was like, you know, we are still in OHIO - open containers on the street are not legal. Um, we didn't really care. That ferry ride had me in tears and several people around us getting sick. The crew was throwing red bags out to passengers left and right that were loosing their lovely dinners which were probably just consumed prior to boarding the boat! What a waste of good lake perch. I have not cried because I was "scared" in forever - for other reasons, yes, but this was truly worse than any plane turbulence I have ever experienced. So the three of us split a quick brew waiting for our taxi in what seemed like hurricane weather - except it was cold, not warm!
- Needless to say, once we hit the hotel room - we cracked a few more cold ones, shots of Jaeger all around and then Janet looks on the floor, and low & behold, a penny... The first penny from heaven of the weekend. The next came just a few minutes later when Janet sat on the bed, and there was another penny right in the middle of the bed - she was very excited... Convinced that Ed was with us!
- We headed out downtown to the Beer Barrel to see the band Brother Trouble. Which was the main reason we picked this weekend to do PIB in the first place. Ed and I saw Brother Trouble two other times in 2011; once at Jim McMahon's Super Bowl party in February and again at Tangiers in Akron in June for the Lopen Charity event to raise money for Akron's Children's Hospital. So, I figured, three times would be the charm. It was fairly dead for the Beer Barrel, but the weather was so terrible that we were just happy to be inside - warm, dry & safe! We had on our glow gloves and we had more beer and great entertainment! I was happy.
Will Bring you Saturday 10/1 events tomorrow.....
Don't forget - November is Pancreatic Cancer Awareness Month.... Bring on the Purple People!
knowitfightitendit.org or pancan.org
Peace.
October has brought many highlights, however.
There was the incredible, but frightening, trip over to Put-In-Bay with Janet & Barb.
- This was the ferry ride from hell on the Jet Express; I guess it was a good thing we caught that 7:15 p.m. on Frid. 9/30, because they cancelled the rest of the trips that night. Barb was hanging on to Janet's left knee and I had the right sleeve of her jacket in a death grip! We were literally coming out of our seats about 8-10 inches with each wave. The sound of the waves hitting the ferry was also extremely frightening.
- So we get to PIB and we are standing in the parking lot of the Jet waiting for a taxi and Barbie cracks open a cold one - I was like, you know, we are still in OHIO - open containers on the street are not legal. Um, we didn't really care. That ferry ride had me in tears and several people around us getting sick. The crew was throwing red bags out to passengers left and right that were loosing their lovely dinners which were probably just consumed prior to boarding the boat! What a waste of good lake perch. I have not cried because I was "scared" in forever - for other reasons, yes, but this was truly worse than any plane turbulence I have ever experienced. So the three of us split a quick brew waiting for our taxi in what seemed like hurricane weather - except it was cold, not warm!
- Needless to say, once we hit the hotel room - we cracked a few more cold ones, shots of Jaeger all around and then Janet looks on the floor, and low & behold, a penny... The first penny from heaven of the weekend. The next came just a few minutes later when Janet sat on the bed, and there was another penny right in the middle of the bed - she was very excited... Convinced that Ed was with us!
- We headed out downtown to the Beer Barrel to see the band Brother Trouble. Which was the main reason we picked this weekend to do PIB in the first place. Ed and I saw Brother Trouble two other times in 2011; once at Jim McMahon's Super Bowl party in February and again at Tangiers in Akron in June for the Lopen Charity event to raise money for Akron's Children's Hospital. So, I figured, three times would be the charm. It was fairly dead for the Beer Barrel, but the weather was so terrible that we were just happy to be inside - warm, dry & safe! We had on our glow gloves and we had more beer and great entertainment! I was happy.
Will Bring you Saturday 10/1 events tomorrow.....
Don't forget - November is Pancreatic Cancer Awareness Month.... Bring on the Purple People!
knowitfightitendit.org or pancan.org
Peace.
Wednesday, October 12, 2011
November is OUR Month!
Hello all,
November is fast approaching and that means it's almost Pancreatic Cancer Awareness Month! There are lots of important and exciting things happening that you can be a part of including fundraising events, our Affiliate Meeting, and our newest event PurpleLight! Also, if you haven't checked out the new campaign for November, please visit knowitfightitendit.org to Be a Hero this November. Here's all the details you'll need to get involved right here in the Cleveland Area!
Cleveland Affiliate Meeting
Wednesday November 9th 6:30pm
Independence Family Health Center
Conference Room "A"
5001 Rockside Road, Crown Centre II
Independence, OH 44131
Purple Possibilities-A Pancreatic Cancer Awareness Fundraiser
Thursday November 10th 7:00pm-10:00pm
The Map Room
1281 W. 9th St.
Cleveland, OH
Pre sale tickets are $10, $15 at the door and $5 for survivors. Music, Food, signature Purple Possibility cocktails, silent auction, and 50/50 raffle.
For more information and tickets please contact Stefanie Merkosky at (440)231-0601 or smerkosky@pancanvolunteer.org
For more information and tickets please contact Stefanie Merkosky at (440)231-0601 or smerkosky@pancanvolunteer.org
PurpleLight National Vigil For Hope
Sunday November 20th 5:00pm
Cuyahoga Community College—East Campus
4250 Richmond Road
Highland Hills, OH 44122
Highland Hills, OH 44122
Cleveland will be one of over 45 communities across the country to host PurpleLight Vigil for Hope event. PurpleLight Vigil for Hope is a time when thousands of people across the country will have the chance to come together to honor loved ones fighting pancreatic cancer and for those who have lost the fight. Participants are encouraged to wear as much purple as possible. The event is free, but please register at http://www.pancan.org/purplelight/ to make sure we have the name of the person or persons you are there in honor or memory of.
You are all Hero's in the fight against this deadly disease and I look forward to seeing you all in November!
Go Purple!
Sunday, October 9, 2011
4.28.2006 E-mail
Last night I read all the e-mails Ed had printed out & saved. This one is entirely too funny, because it is as Cheezy as it gets. We were like two teenagers when we started dating and our hearts were just filled with incredible hope and joy in the beginning. I hope this makes you laugh. By the way, "CTSF" stood for Carpal Tunnel Suck Fish - long story, but too sweet that he was as goofy as I am and loved the stupid initial game we played.
From: Ed Demyan
Sent: Friday, April 28, 2006 @ 12:06 pm
My Crab, I hope your day has gotten better and if it hasn't maybe this will help you. I wanted to tell you my feelings in verse. Tell me what you think. Your CTSF :) xoxoxo
"Like a ray of sun that shines on morning dew,
You came into my life from out of the blue.
I did not look and could not see,
What was right in front of me.
I used to see you from afar,
Not really knowing who you are.
But something happened from the start,
On that night of Friday when you stole my heart."
Thank you my love... Every word is so precious and sacred to me. I am so incredibly sad right now that even the smallest things from you mean so much.
It seems I keep hearing one song over and over on the radio, I know it doesn't really mean anything, but when I hear the lyrics reminding me not to fear the reaper, I know now that I don't. When my time comes, I will not be afraid because I know it is you that I will be joining. However, I am also afraid that, because I do not pray anymore, I might not be able to be with you. It is an internal struggle like I have never had before. I know people in your past probably prayed that I would be out of their lives and yours, and those prayers were answered, just not in the way that was wanted. So, I am afraid to pray, because if you don't pray for the exact right thing, it may turn out horrifically bad. It's the old "be careful what you wish for, because you just might get it" scenario. So, if God has everything already pre-determined, why pray, it won't change anything from what I understand. So, do I still believe He is - I do, but do I believe it will make a difference if I pray, I don't. It is in His hands and it comes down to my Mom's favorite saying of all, "It is what it is".
Paige's Birthday party is Friday, you always loved getting ready for her BD and the party, and this is going to be a difficult one to say the least. Our hearts are broken and she missed you so much yesterday after her soccer game. She had a bad game and all she said when it was over was, "I just want Ed here". You had a great way of putting things into perspective for her and she misses that so much. She sleeps with one of your t-shirts every night. Oh, and, the feeling is mutual, I just want Ed here.
Peace my love.
From: Ed Demyan
Sent: Friday, April 28, 2006 @ 12:06 pm
My Crab, I hope your day has gotten better and if it hasn't maybe this will help you. I wanted to tell you my feelings in verse. Tell me what you think. Your CTSF :) xoxoxo
"Like a ray of sun that shines on morning dew,
You came into my life from out of the blue.
I did not look and could not see,
What was right in front of me.
I used to see you from afar,
Not really knowing who you are.
But something happened from the start,
On that night of Friday when you stole my heart."
Thank you my love... Every word is so precious and sacred to me. I am so incredibly sad right now that even the smallest things from you mean so much.
It seems I keep hearing one song over and over on the radio, I know it doesn't really mean anything, but when I hear the lyrics reminding me not to fear the reaper, I know now that I don't. When my time comes, I will not be afraid because I know it is you that I will be joining. However, I am also afraid that, because I do not pray anymore, I might not be able to be with you. It is an internal struggle like I have never had before. I know people in your past probably prayed that I would be out of their lives and yours, and those prayers were answered, just not in the way that was wanted. So, I am afraid to pray, because if you don't pray for the exact right thing, it may turn out horrifically bad. It's the old "be careful what you wish for, because you just might get it" scenario. So, if God has everything already pre-determined, why pray, it won't change anything from what I understand. So, do I still believe He is - I do, but do I believe it will make a difference if I pray, I don't. It is in His hands and it comes down to my Mom's favorite saying of all, "It is what it is".
Paige's Birthday party is Friday, you always loved getting ready for her BD and the party, and this is going to be a difficult one to say the least. Our hearts are broken and she missed you so much yesterday after her soccer game. She had a bad game and all she said when it was over was, "I just want Ed here". You had a great way of putting things into perspective for her and she misses that so much. She sleeps with one of your t-shirts every night. Oh, and, the feeling is mutual, I just want Ed here.
Peace my love.
Monday, October 3, 2011
10.3.11 Following PIB
As I was driving to work this morning, I realized I finally had my first real dream about Ed since he died. I couldn't decide if I had the dream because I was worried about this past weekend, and if he would truly be happy about being on PIB for all eternity (not all of him, just a little)... Janet and Barb were convinced that it was absolutely the right thing. There were several "penny's from heaven" involved, a bartender named "Eddie" who's favorite saying was "Living The Dream", which most of his friends know was one of Ed's favorite sayings, etc - more on that in my blog later... So, driving to work this morning, still wondering if it was right - the following song comes on 107.3, Ed sang this song to me when we danced at my cousin's wedding last October and was one of his favorite songs and one of my favorite memories of him. I have only heard it on the radio one other time, with Barb ironically.... So, I figure, he is happy. I will meet you on the other side, Baby.
He was the best! This is why I was at every doctor appointment, chemo treatment, invasive procedure, hospice the first go around for pain management and hospice for 6 days and nights at the end. This is why I have to let go of some of the negative emotions I have been having. I know what we had and it doesn't really matter what anyone else thinks or believes, because that is what Ed would have told me.
You are in some pretty spectacular places now my love - I hope you enjoyed what you witnessed on Friday and Saturday, cause I sure enjoyed taking you on that trip! Oh, and Barbie & Janet really had fun helping me - thank you sweet friends! I think we now have a new tradition for PIB - Fall Ball look out, you have some new fans that will be joining you for some time to come, God willing.
Just Breathe (Lyrics) Artist: Pearl Jam; Composer: Pearl Jam
Lyrics:
Yes I understand that every life must end, aw huh,..
As we sit alone, I know someday we must go, aw huh,..
I’m a lucky man to count on both hands
The ones I love,..
Some folks just have one,
Others they got none, aw huh,..
Stay with me,..
Let’s just breathe.
Practiced are my sins,
Never gonna let me win, aw huh,..
Under everything, just another human being, aw huh,..
Yeah, I don’t wanna hurt, there’s so much in this world
To make me bleed.
Stay with me,..
You’re all I see.
Did I say that I need you?
Did I say that I want you?
Oh, if I didn’t now I’m a fool you see,..
No one knows this more than me.
As I come clean.
I wonder everyday
As I look upon your face, aw huh,..
Everything you gave
And nothing you would take, aw huh,..
Nothing you would take,..
Everything you gave.
Did I say that I need you?
Oh, Did I say that I want you?
Oh, if I didn’t now I’m a fool you see,..
No one knows this more than me.
I come clean.
Nothing you would take,..
Everything you gave.
Hold me till I die,..
Meet you on the other side.
He was the best! This is why I was at every doctor appointment, chemo treatment, invasive procedure, hospice the first go around for pain management and hospice for 6 days and nights at the end. This is why I have to let go of some of the negative emotions I have been having. I know what we had and it doesn't really matter what anyone else thinks or believes, because that is what Ed would have told me.
You are in some pretty spectacular places now my love - I hope you enjoyed what you witnessed on Friday and Saturday, cause I sure enjoyed taking you on that trip! Oh, and Barbie & Janet really had fun helping me - thank you sweet friends! I think we now have a new tradition for PIB - Fall Ball look out, you have some new fans that will be joining you for some time to come, God willing.
Thursday, September 29, 2011
Purple Light - November 20, 2011
volunteer for progress during
National pancreatic cancer awareness month in November
All members of the community are invited to participate in the following activities during National Pancreatic Cancer Awareness Month:
- PurpleLight - On November 20, 2011 the Cleveland Affiliate of the Pancreatic Cancer Action Network will join thousands of people across the country to participate in one of over 45 PurpleLight Vigil for Hope events. The candlelight vigil will honor those who have fought pancreatic cancer and celebrate the survivors, while raising community awareness about the disease. To register, and submit the name you would like read during the ceremony, please visit www.purplelight.org
- Tempur-Pedic® 2011 Hugs Back Campaign: Feel the Difference. Make a Difference. - During the month of November Tempur-Pedic has committed to contribute $10 to the Pancreatic Cancer Action Network for every individual who tests a Tempur-Pedic mattress at a participating authorized retailer. To find a retailer visit www.tempurpedic.com
- Z Gallerie Awareness Month Shopping Weekend – In memory of Shirley Zeiden, mother of the company’s founders, Z Gallerie will donate 10 percent sales from November 5 through November 7. Shop or find a store near you at www.zgallerie.com.
74 percent of patients die within the first year of diagnosis. The survival rate has not substantially improved in over forty years because early detection tools and effective treatments have yet to be developed. Despite these sobering statistics, just two percent of the National Cancer Institute’s (NCI) federal research funding is allocated to pancreatic cancer. Once enacted and fully funded, Pancreatic Cancer Research and Education Act (S. 362/ H.R. 733) will ensure that the NCI develops a long-term comprehensive strategic plan for developing early diagnostics and treatment options that will increase the survival rate for pancreatic cancer patients.
Pancreatic cancer has claimed the lives of many public figures, including actor Patrick Swayze, Carnegie Mellon University Professor and author of the Last Lecture, Dr. Randy Pausch, actor Michael Landon, and opera tenor Luciano Pavarotti.
To learn more about the Pancreatic Cancer Action Network and the Cleveland Affiliate visit:
About the Pancreatic Cancer Action Network
The Pancreatic Cancer Action Network is the national organization creating hope in a comprehensive way through research, patient support, community outreach and advocacy for a cure. The organization is leading the way to increase the survival rate for people diagnosed with this devastating disease through a bold initiative —The Vision of Progress: Double the Pancreatic Cancer Survival Rate by 2020. Together, we can know, fight and end pancreatic cancer by intensifying our efforts to heighten awareness, raise funds for comprehensive private research, and advocate for dedicated federal research to advance early diagnostics, better treatments and increase chances of survival.
Contact:
Mary Kaye Mackulin
Media Rep – Cleveland AffiliatePancreatic Cancer Action Network
e-mail: mmackulin@pancanvolunteer.org
Tuesday, September 27, 2011
Fund Raiser in Scottsdale AZ with Jim McMahon
If anyone reading this lives in Scottsdale, AZ - You should get a ticket - support this fund raiser - and you will have a BLAST. I guarantee it - if you don't have a blast - I will refund your ticket price. (Actually, no I won't - if I could I would, but if I could do that - I'd be at the fund raiser myself!)
http://www.prweb.com/releases/Shpoonkle/SponsorMusicJam/prweb8815364.htm
http://www.prweb.com/releases/Shpoonkle/SponsorMusicJam/prweb8815364.htm
Thursday, September 22, 2011
Broken Heart
Well, I know that it is going to shock NO ONE, when I say my heart is just so broken right now.
I will be going to get Ed's bowling shirt tonight, and so do NOT want to go into HIS house. I know I am going to encounter sights that will just kill me, but again, I need to muster up the "it is what it is" 'tude. I guess I'm thankful that I can even get the shirt, I'm going to have it matted & framed with a picture of him & Dickey. Then I'm hoping Greg can hang it somewhere at the lanes. I think everybody would really enjoy that - I know Ed would love to be hangin' out at Dickey's Lanes with his friends.
I am missing his voice more than ever right now. I know this will pass, but it's not passing quickly enough. It is funny, Ed had a very strong feeling about how things would occur once he passed, and so far, almost everything he thought would happen has occurred in the past 5 weeks. It's funny how people's tunes change when cold-hard-cash comes into play. I would love to say that if I received a big fat gov't check that I'd be fine and oh so "life is good" - but I doubt it would matter. It was never about money or stuff with us, it was always about time - the only thing he truly did not receive enough of. He always knew that when I called him (or vice-a-verse) it wasn't to say - "hey, I need...." it was always just to hear each other and catch up on our day and be supportive of what the other was going through at that particular moment. We truly just enjoyed the hell out of each other, it was rare, it is gone.
The angry, bitter taste I have in my mouth will eventually fade away and this constant feeling of vomiting will also eventually be gone.... however, some feelings I have, I know I will have forever. For all the love, joy and happiness Edward brought into my life, the flip side of what he introduced me to has been one of the ugliest things I have ever witnessed and nothing can change that. I will probably never trust anyone again, 'cause that is just how I role. I certainly know that finding someone I get along with that well again, is about a 1 in a gazillion chance. So, I just get out of bed every day, breath and move forward, slowly, but still forward.
So for every person who continues to remind me how strong I am - I am not. I am just normal. I fought for Edward because I loved him unconditionally, he is gone, there is no more fight left in me right now. Strength will come again, and I will continue to battle this f'ing disease, but right now I am exhausted, physically, mentally and emotionally.
I will be going to get Ed's bowling shirt tonight, and so do NOT want to go into HIS house. I know I am going to encounter sights that will just kill me, but again, I need to muster up the "it is what it is" 'tude. I guess I'm thankful that I can even get the shirt, I'm going to have it matted & framed with a picture of him & Dickey. Then I'm hoping Greg can hang it somewhere at the lanes. I think everybody would really enjoy that - I know Ed would love to be hangin' out at Dickey's Lanes with his friends.
I am missing his voice more than ever right now. I know this will pass, but it's not passing quickly enough. It is funny, Ed had a very strong feeling about how things would occur once he passed, and so far, almost everything he thought would happen has occurred in the past 5 weeks. It's funny how people's tunes change when cold-hard-cash comes into play. I would love to say that if I received a big fat gov't check that I'd be fine and oh so "life is good" - but I doubt it would matter. It was never about money or stuff with us, it was always about time - the only thing he truly did not receive enough of. He always knew that when I called him (or vice-a-verse) it wasn't to say - "hey, I need...." it was always just to hear each other and catch up on our day and be supportive of what the other was going through at that particular moment. We truly just enjoyed the hell out of each other, it was rare, it is gone.
The angry, bitter taste I have in my mouth will eventually fade away and this constant feeling of vomiting will also eventually be gone.... however, some feelings I have, I know I will have forever. For all the love, joy and happiness Edward brought into my life, the flip side of what he introduced me to has been one of the ugliest things I have ever witnessed and nothing can change that. I will probably never trust anyone again, 'cause that is just how I role. I certainly know that finding someone I get along with that well again, is about a 1 in a gazillion chance. So, I just get out of bed every day, breath and move forward, slowly, but still forward.
So for every person who continues to remind me how strong I am - I am not. I am just normal. I fought for Edward because I loved him unconditionally, he is gone, there is no more fight left in me right now. Strength will come again, and I will continue to battle this f'ing disease, but right now I am exhausted, physically, mentally and emotionally.
Sunday, September 18, 2011
I Love Carrie Bradshaw
Sex In The City Episode - The Thank You Note.... Carrie Bradshaw is sad about Big marrying a younger, more sophisticated woman... Ah, but you cannot buy brains people, she receives a thank you note from Natasha (I think that was her name) and the note contains some of the following... Thank you for coming, sorry I couldn't be "their". Carrie calls one of her friends, Miranda I think, and says it's a good thing she found someone to take care of her, cause she's an idiot! I recently read a sentence that reminded me of this episode, it was written something like this: "The Smith's are going to get there own house and we are going to move there belongings" Life imitating art, oh my yes - easing some of the pain of what has gone down in the last 4 weeks, oh my yes! And, like Carrie, I laughed quite hard.
My love, I know you must be cringing up in heaven right now about things that have occurred since you passed away - but I am going to try and go with the "it is what it is" attitude. And, you knew better than anyone, you cannot help someone that doesn't want your help. I tried, I was shut out, I walked away.
My heart aches every single day for you, but you might like to know that someone at the Gremm's house yesterday thought I was Jimmy Pope's "wife" - we had a huge laugh about it! I know you would have thought that was very funny. Getting to see Krissy & Raul in from Dallas and having some authentic Texas brisket made for a lovely evening on your 1 month anniversary.... ILYVM, always me xoxoxo
My love, I know you must be cringing up in heaven right now about things that have occurred since you passed away - but I am going to try and go with the "it is what it is" attitude. And, you knew better than anyone, you cannot help someone that doesn't want your help. I tried, I was shut out, I walked away.
My heart aches every single day for you, but you might like to know that someone at the Gremm's house yesterday thought I was Jimmy Pope's "wife" - we had a huge laugh about it! I know you would have thought that was very funny. Getting to see Krissy & Raul in from Dallas and having some authentic Texas brisket made for a lovely evening on your 1 month anniversary.... ILYVM, always me xoxoxo
Monday, September 12, 2011
Looking back on his FB page
Thank you my love for your gift of words... I continue to search for anything and everything you ever wrote to me, it reassures me everyday of what we had... others remind me, but each day you are gone, I seem to forget just a tiny bit. This helps so much.
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