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Advocacy Action Center
Pass the Pancreatic Cancer Research & Education Act this Year!
The Pancreatic Cancer Research & Education Act (S. 362/H.R. 733) has achieved an extraordinary level of support. No health-related bill has more bi-partisan co-sponsors in the 112th Congress. Yet, the committees of jurisdiction over this bill have not taken action on the bill despite the support of a majority of both committees’ members. We are grateful that the authors of S. 362 (Senator Whitehouse) and H.R. 733 (Reps. Eshoo and Lance) have drafted a “Dear Colleague” letter urging the leaders of the Senate HELP and House Energy & Commerce Committees to mark up these bills right away so that the full Senate and House can vote on them. We need as many signatures on the Senate and House Dear Colleague letters as possible so that the committees of jurisdiction get S. 362/H.R. 733 moving to a vote and to the president’s desk by the end of the year! Below is a list of all the senators and representatives (listed by state) who have already signed onto the letters. Please click on the buttons below to send an email to your members of Congress and either thank them for signing onto the letter or request that they do so no later than Friday, July 13. It is time Congress acts on critical pancreatic cancer legislation!
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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, July 3, 2012
Where We Stand as of 7.2.12 with Gov't Support
Here is the information that I copied & pasted from our Advocacy page. You can access this page yourself and send an already created letter to your Senators and/or Congressmen to help change the future of this disease: http://www.pancan.org/section_get_involved/advocate/advocacy_action_center.php
Monday, June 25, 2012
In D.C. Overwhelmed & Scared for tomorrow
I don't have a lot of time - I needed to do some work in the business center here at the hotel... Just wanted to remind you all:
Join thousands on June 26, 2012 and tell your members of Congress that they must pass the Pancreatic Cancer Research & Education Act this year! Sign –up now for the National Call-in! www.Pancan.org/takeaction
I will be on the hill that day - your call helps to support the people that are there in person and to reassure our nations leaders that we are serious about making a change - and we need their help! Every Single Call Matters - 10 minutes of your day can help change the future for thousands of people! DO IT!
We are about 684 Strong Here in D.C. - We have Spent the day in Educational Meetings - We got to meet the 15 yr. old genius who may one day change the face of cancer - We got to hear our Ambassador of Hope, Lisa Niami Swayze, give us a quick pep-talk - We are scared and nervous - and we will hit the hill hard tomorrow!
PLEASE back us up and call in - it's super easy and will help make the impact so much stronger than the almost 700 of us in person can make!
I have cried more today than I have in so long - it's been so incredibly emotional - every personal story touches my heart and makes me weep like a small child. It's embarrassing - but I am surrounded by hundreds of people who have walked in these shoes and are determined to change the future of this disease!
KnowitFightitEndit.org - Together we are Strong!
Love to you all - Peace! MK
Join thousands on June 26, 2012 and tell your members of Congress that they must pass the Pancreatic Cancer Research & Education Act this year! Sign –up now for the National Call-in! www.Pancan.org/takeaction
I will be on the hill that day - your call helps to support the people that are there in person and to reassure our nations leaders that we are serious about making a change - and we need their help! Every Single Call Matters - 10 minutes of your day can help change the future for thousands of people! DO IT!
We are about 684 Strong Here in D.C. - We have Spent the day in Educational Meetings - We got to meet the 15 yr. old genius who may one day change the face of cancer - We got to hear our Ambassador of Hope, Lisa Niami Swayze, give us a quick pep-talk - We are scared and nervous - and we will hit the hill hard tomorrow!
PLEASE back us up and call in - it's super easy and will help make the impact so much stronger than the almost 700 of us in person can make!
I have cried more today than I have in so long - it's been so incredibly emotional - every personal story touches my heart and makes me weep like a small child. It's embarrassing - but I am surrounded by hundreds of people who have walked in these shoes and are determined to change the future of this disease!
KnowitFightitEndit.org - Together we are Strong!
Love to you all - Peace! MK
Wednesday, June 20, 2012
http://www.pancan.org/email/gaa/3WC/3week_challenge_2012_week2.html
http://www.pancan.org/email/gaa/3WC/3week_challenge_2012_week2.html
The Time Has Come - In less than 1 week I will join over 600 of my purple family members on Capital Hill... Our bill has been on the floor for five years, in that time over 181,000 lives have been lost to Pancreatic Cancer... YOU can help change the future from the comfort of your own home! Make the Call to the Capital on Tuesday, June 26, 2012 and support those of us there in person. Every Call Matters - EVERY SINGLE ONE. Alone we can do so little - but together we make change!
2012 needs to be our year - I promised Ed to never give up his fight and I intend to do just that... People may be sick of hearing my message, but that's too darn bad.... He was such an outstanding human being that words will never do him justice... I refuse to let his death be in vain and I refuse to sit back and do nothing - He will own my heart always and I will fight until mine stops beating. I Love You Much my Sweet EJD... We will win this battle. And Thank You Love for the sweet Karma this past weekend - you were truly with us! xoxoxo me xoxoxo
The Time Has Come - In less than 1 week I will join over 600 of my purple family members on Capital Hill... Our bill has been on the floor for five years, in that time over 181,000 lives have been lost to Pancreatic Cancer... YOU can help change the future from the comfort of your own home! Make the Call to the Capital on Tuesday, June 26, 2012 and support those of us there in person. Every Call Matters - EVERY SINGLE ONE. Alone we can do so little - but together we make change!
2012 needs to be our year - I promised Ed to never give up his fight and I intend to do just that... People may be sick of hearing my message, but that's too darn bad.... He was such an outstanding human being that words will never do him justice... I refuse to let his death be in vain and I refuse to sit back and do nothing - He will own my heart always and I will fight until mine stops beating. I Love You Much my Sweet EJD... We will win this battle. And Thank You Love for the sweet Karma this past weekend - you were truly with us! xoxoxo me xoxoxo
Monday, June 18, 2012
June 26, 2012 National Call In Day to Support The Pancreatic Cancer Research and Education Act!
Join thousands on June 26 and tell your members of Congress that they must pass the Pancreatic Cancer Research & Education Act this year! Sign –up now for the National Call-in! www.Pancan.org/takeaction
I will be on the hill that day - your call helps to support the people that are there in person and to reassure our nations leaders that we are serious about making a change - and we need their help! Every Single Call Matters - 10 minutes of your day can help change the future for thousands of people! DO IT!
AND............ A HUGE - GIGANTIC - ROCKSTAR THANK YOU TO OUR PURPLESTRIDE CLEVELAND 2012 TEAM......... The Event Was A HUGE Success and your love and support mean the absolute world to me! NewsNet 5 - Thank you for covering our event and for the support from their very own Joe Pagonakis, our incredible emcee: http://www.newsnet5.com/dpp/money/consumer/troubleshooter/clevelands-purplestride-event-raised-thousands-for-panceratic-cancer-research
I will be on the hill that day - your call helps to support the people that are there in person and to reassure our nations leaders that we are serious about making a change - and we need their help! Every Single Call Matters - 10 minutes of your day can help change the future for thousands of people! DO IT!
AND............ A HUGE - GIGANTIC - ROCKSTAR THANK YOU TO OUR PURPLESTRIDE CLEVELAND 2012 TEAM......... The Event Was A HUGE Success and your love and support mean the absolute world to me! NewsNet 5 - Thank you for covering our event and for the support from their very own Joe Pagonakis, our incredible emcee: http://www.newsnet5.com/dpp/money/consumer/troubleshooter/clevelands-purplestride-event-raised-thousands-for-panceratic-cancer-research
ED'S ALL STAR DREAM TEAM IS TRULY THAT - A DREAM COME TRUE TEAM!
Thursday, June 14, 2012
Cleveland.Com Posts our Letter to the Editor!
Yeah Cleveland.Com for posting our VERY important LTE... As we continue to fight this Monster disease, the support of our local media is paramount. People Need to Be Aware in order to make a difference... Because of Media Support, everyone knows what "pink" stands for, or even "yellow"... we need everyone to know that this disease needs advocates too. We need funds for research too. We need an early detection tool too. I am very proud to be a CLE homer everyday, but today even more so!
http://www.cleveland.com/sun/all/index.ssf/2012/06/support_needed_for_bill_to_fun.html
And, I just want to send Ed some really big hugs and kisses today, June 14... Two years ago today we got engaged at Put-In-Bay in Mossbacks over delicious Walleye Nuggets... We were so incredibly hopeful at that time that he was going to make it to surgery and live for quite a while longer... it was not to be, but that day (this day) is very special to me... then we went to Cedar Point the following day and had an absolute BLAST... What was so special about that little 3 day get-away was it was just the two of us - no family / no friends - just us being us.... in a perfect world everyone would get to experience what we had - I know I've said it a thousand times - it was special. We were truly a great team.... It is unfortunate that it was not supported by a lot of people, but it is true none-the-less .... And again, I reiterate - it's my blog, if you are going to read it just to type nasty comments about it - um, don't read it. RIP my sweet EJD - I miss you every second of every day!
Tuesday, June 12, 2012
Interview with WDOK's Jim McIntyre & National Call-In Day
Here is the link to the interview Jim McIntyre did with myself and Sarah Keil-Chernoff (of the Walking for Wendy Family/Team) ... Below the written paragraph, you can listen to the audio... My gosh we were so so nervous, but I think we did a really good job! Go Sarah - you are a rock star!
http://wdok.radio.com/2012/06/10/purple-stride-cleveland-fighting-pancreatic-cancer/
Jim, the Chernoff Family and Miss Rona gave us this incredible opportunity to share our passion in fighting this Living, Breathing Monster and we truly appreciate it.
This week, an 11 year old little boy in central Florida passed away from Pancreatic Cancer, recently a kindergartner was diagnosed with stage IV PC in southern Illinois, three teenagers have been battling this disease and have made the news recently.... This disease does not discriminate, it is not an "Old Man's Disease" it is not an Alcoholics disease - this disease can touch anyone and everyone and if we don't make changes soon - a lot more of you reading this will know someone touched by this killer.
We Need You to help make the future different, help make the future better and we need the Government to step up take this seriously, along with the National Cancer Institute... 2% of the annual NCI budget is not enough - not even close.... Support the Pancreatic Cancer Research and Education Act by joining us on National Call in Day on Tuesday, June 26.... click this link to learn more about how YOU can help from the comfort of your own home by making a phone call or two:
http://pancan.org/section_get_involved/advocate/advocacy_day_2012/national_call-in.html
Can't open the link, well then, here ya go:
http://wdok.radio.com/2012/06/10/purple-stride-cleveland-fighting-pancreatic-cancer/
Jim, the Chernoff Family and Miss Rona gave us this incredible opportunity to share our passion in fighting this Living, Breathing Monster and we truly appreciate it.
This week, an 11 year old little boy in central Florida passed away from Pancreatic Cancer, recently a kindergartner was diagnosed with stage IV PC in southern Illinois, three teenagers have been battling this disease and have made the news recently.... This disease does not discriminate, it is not an "Old Man's Disease" it is not an Alcoholics disease - this disease can touch anyone and everyone and if we don't make changes soon - a lot more of you reading this will know someone touched by this killer.
We Need You to help make the future different, help make the future better and we need the Government to step up take this seriously, along with the National Cancer Institute... 2% of the annual NCI budget is not enough - not even close.... Support the Pancreatic Cancer Research and Education Act by joining us on National Call in Day on Tuesday, June 26.... click this link to learn more about how YOU can help from the comfort of your own home by making a phone call or two:
http://pancan.org/section_get_involved/advocate/advocacy_day_2012/national_call-in.html
Can't open the link, well then, here ya go:
 National Call-InWe need YOU to Call Congress on Tuesday, June 26thIf you cannot travel to Washington, DC, to join us for the Sixth AnnualPancreatic Cancer Advocacy Day, we hope that you will participate in the National Call-In. Please mark your calendar for Tuesday, June 26th and be prepared to spend 10 minutes placing three very important phone calls that day. What is the National Call-In?The National Call-in is an opportunity for all Pancreatic Cancer Action Networksupporters across the country to join together with one voice to tell Congress that while you can't attend Advocacy Day in person, you believe that the time has come for Congress to take action on pancreatic cancer! How does it work?On Monday, June 25th, 2012, you will receive an email with instructions on howto place the calls to your two U.S. Senators and U.S. Representative. The email will include their office phone numbers, and what we'd like for you to say. The calls should take less than 10 minutes of your time, but they will significantly impact our efforts to make the pancreatic cancer community heard. To ensure you receive the National Call-In email, sign up for the Advocacy E-list. Information about the National Call-In will also be available at www.pancan.org on June 26. Mark your calendar today!More than 2,800 phone calls were placed to Congress during the 2011 National Call-In.These calls were a tremendous help in augmenting the in-person meetings that were happening as part of the Advocacy Day. Please mark your calendar now for the 2012 National Call-In on June 26th and ask your friends and family to do the same. With your help, we can double the amount of calls that are placed to members of Congress during this year's Advocacy Day and make sure that legislators hear our message loud and clear: Pancreatic Cancer: Know It. Fight It. End It! Questions? If you have any questions about the Sixth Annual Pancreatic Cancer Advocacy Day, please contact our Government Affairs & Advocacy Department at advocacy@pancan.org or 202-742-6699. |
Sunday, June 10, 2012
Local Real Estate Investor, Entrepreneur, Cancer Survivor To Speak at PurpleStride Cleveland | PRLog
Local Real Estate Investor, Entrepreneur, Cancer Survivor To Speak at PurpleStride Cleveland | PRLog
Inspiring and miraculous ... And why we fight!
Ed's All Star Dream Team could use some more love.... Feel free to join our team or make a donation in honor of Ed or a loved one of your own.
Together we battle, together we will win!
Inspiring and miraculous ... And why we fight!
Ed's All Star Dream Team could use some more love.... Feel free to join our team or make a donation in honor of Ed or a loved one of your own.
Together we battle, together we will win!
Friday, June 1, 2012
Just for those wondering...
A little history lesson on the Pancreatic Cancer Action Network ....
"For those who are fairly new to the organization, just to give you some historical perspective, the very first Evening with the Stars in 1998 raised funds that provided the seed money to start the early detection research lab at Johns Hopkins, where important research results continue to flourish. Even with that effort, in 2003 (the year the first leadership conference was held), there were still fewer than TEN full-time pancreatic cancer researchers in the entire country. That was the year during which Pancreatic Cancer Action Network began to fund career development awards. The main focus of these awards was to attract young researchers into the field of pancreatic cancer research. As those young researchers developed promising research, they were more likely to qualify for the larger federal grants or private grants that would enable them to do even more research. Once those people who were early in their careers became successful in the field of pancreatic cancer research, it would improve the chances that they would remain in the field. Indeed, most of the researchers who received those early awards have remained in the field, and many of them have gone on to lead the efforts that have led to new discoveries.
Pancreatic Cancer Action Network has been credited in professional journals and elsewhere as being the leader that helped change the face of research for pancreatic cancer. Because of the efforts of this organization, other organizations that support pancreatic research have said that they are now getting proposals for much better research. In April 2010, Julie Fleshman received the Distinguished Public Service Award from the AACR (the leading cancer research organization in the world) in part because Pancreatic Cancer Action Network almost DOUBLED its commitment to research funding from 2009 to 2010. I was told at that time that the commitment for research funding was increasing about 70% more between 2010 and 2011.
In addition, through its advocacy efforts, the organization has helped federal funding for pancreatic cancer research increase from $17 million per year in 1999, to $96 million in 2010.
So, if anybody ever asks you what this organization has done, those are some pretty impressive facts. Because YOU volunteer, YOU help the organization focus that money on research. And everybody who contributes to the fundraising efforts around the country helps those research dollars continue to grow."
Pancreatic Cancer Action Network has been credited in professional journals and elsewhere as being the leader that helped change the face of research for pancreatic cancer. Because of the efforts of this organization, other organizations that support pancreatic research have said that they are now getting proposals for much better research. In April 2010, Julie Fleshman received the Distinguished Public Service Award from the AACR (the leading cancer research organization in the world) in part because Pancreatic Cancer Action Network almost DOUBLED its commitment to research funding from 2009 to 2010. I was told at that time that the commitment for research funding was increasing about 70% more between 2010 and 2011.
In addition, through its advocacy efforts, the organization has helped federal funding for pancreatic cancer research increase from $17 million per year in 1999, to $96 million in 2010.
So, if anybody ever asks you what this organization has done, those are some pretty impressive facts. Because YOU volunteer, YOU help the organization focus that money on research. And everybody who contributes to the fundraising efforts around the country helps those research dollars continue to grow."
Borrowed from Mary Zapor, one of my buddies in volunteering for this outstanding organization!
We will change the future - we just need to bring the awareness and ensure that the Government steps up for this cancer.... It's our turn - It's our time!
Wednesday, May 30, 2012
What an Awesome Day!
It was such a bitter sweet long weekend... This was Ed's weekend, This was the kick off to summer which he loved so much... This was hangin' out with friends and fishing and sitting in the sun... This was everything that he was. There were a lot of tears this weekend too. But there was love and friendship and all the good things that summer in Cleveland brings! No ribs, but I'll hit one of the burn-offs soon enough! And it was HOT, too hot for me - Ed would have loved it! It was never "too" hot for him... he hated the cold more than anyone I've ever known... even my re-located-to-the-South-cause-I-hate-winter cousins! Speaking of which, our new family member should arrive this week.... Can't wait to hear the good news that baby-boy R has been deposited safely on earth in Charlotte, NC.... great excuse to go for an 8 hour drive!
So happy that I also finished my goodies for our PurpleStride 2012 Team Members... I may need a team co-captain to help distribute said goodies to the team while I'm doing whatever it is necessary that morning to be ready for our big event! Our Team hit the #59 mark and I could not be more thrilled (well, I could be - like, if we hit 80 and topped last years number, but I know that is not a realistic number this year - maybe 2013). I cannot believe we are sooo close to the day! Excited and nervous and anxious and excited, and did I say, excited! One small issue, hoping it turns into a non-issue, we will see. Can't predict the future now can we. Everything will work out just like it is supposed too! Because I have faith ...
The Kid is in the midst of the spring soccer tournament, and are these gal's playing some tough ball... I mean to tell you that yesterday that team played about as hard as you can for a 1-0 victory. All very exciting... They will play another game Thursday, and looks like they will be making the Championship game on Friday evening - she is so excited (it's really quite sweet to see these teenagers act like little kids sometimes). She also has orientation on Thursday evening into her vocational program for her Jr. year... we are very excited and nervous about this as well... hope it goes fast so she can be at the soccer field before that game starts... nothing like showing up to orientation in your soccer uniform & cleats. Never a dull moment.
I worked my second farmers market (Tremont Farmers Market, Cleveland) yesterday to promote awareness and education for the Pancreatic Cancer Action Network and it went really well. I figure by the time the last market rolls around in October, I will have it down to a science. Two of my sweet friends stopped by to say "hello" and I love when that happens! Ray was nice enough to snap a photo! It was a great evening all around from market to soccer game!
Happy Summer everyone.... Nothing like being on the North Coast in summer time! MK
PS - still haven't taken his cell number out of my phone, just can't hit that delete button, every time I try I hit cancel... soon though, soon.
So happy that I also finished my goodies for our PurpleStride 2012 Team Members... I may need a team co-captain to help distribute said goodies to the team while I'm doing whatever it is necessary that morning to be ready for our big event! Our Team hit the #59 mark and I could not be more thrilled (well, I could be - like, if we hit 80 and topped last years number, but I know that is not a realistic number this year - maybe 2013). I cannot believe we are sooo close to the day! Excited and nervous and anxious and excited, and did I say, excited! One small issue, hoping it turns into a non-issue, we will see. Can't predict the future now can we. Everything will work out just like it is supposed too! Because I have faith ...
The Kid is in the midst of the spring soccer tournament, and are these gal's playing some tough ball... I mean to tell you that yesterday that team played about as hard as you can for a 1-0 victory. All very exciting... They will play another game Thursday, and looks like they will be making the Championship game on Friday evening - she is so excited (it's really quite sweet to see these teenagers act like little kids sometimes). She also has orientation on Thursday evening into her vocational program for her Jr. year... we are very excited and nervous about this as well... hope it goes fast so she can be at the soccer field before that game starts... nothing like showing up to orientation in your soccer uniform & cleats. Never a dull moment.
Happy Summer everyone.... Nothing like being on the North Coast in summer time! MK
PS - still haven't taken his cell number out of my phone, just can't hit that delete button, every time I try I hit cancel... soon though, soon.
Friday, May 25, 2012
Bad Day, just a Bad Day!
I had one of the worst days imaginable on Thursday; Started with 2 data-bases at work - not "working" - so it made it really difficult for me to "work" .... Frustrating beyond belief. But, first 9 hours of the day - done, time to move on to the the after work activities and should be smooth sailing............ never assume.
Earlier in the day I was excited because I received notification that Ed's cell will finally be disconnected. However, T-Mobile cannot follow the simplest of instructions (yet again) to turn off Ed's phone / leave mine on and put the bill in my name.... I would appreciate comments regarding the difficulty of this... If you all understand the following instructions, I'd appreciate you letting me know, cause it seems fairly simple to me?!... I could not have spelled it out any more clearly - AND this was per T-Mobile's instructions I might add:
1) Turn Off Phone # (216) 555.5555 - person connected to phone deceased - see attached death certificate and obituary!
2) Put Bill in the name of ME
3) DO NOT mess with Phone # (440) 555.5555
(O.K., let's face it - I worded my fax a bit more professionally - but really it WAS that clear and simple)
Of Course, they turned off MY phone - and left Ed's on... last time I dealt with T-Mobile, right after Ed passed, they gave his number a new 2 year plan - my dead fiance' had a new 2 year contract... I just wanted his phone "on" for at least 6 months so I could make sure all creditors & what-not could be directed to his estate attorney... What a nightmare. They did, however, manage to get the bill to my address so I could continue to pay it..... funny how when it came to the money they were right on!
So, I leave work - can't call the Kid cause I realize half way home that MY phone is turned off - rush to pick her up to get her to a Doctors appointment at 5 p.m. - get to the Dr.'s office and practically throw her out of the car so I can speed off to the T-Mobile store in my community... all so annoying... Anyway, Happy ending (oh, that sounds dirty)! WITH A HUGE Shout Out to the T-Mobile Store in Strongsville Ohio for working with your own customer service people, getting my phone turned back on and finally disconnecting Ed's phone... It was bitter-sweet.... On one hand, it's another thing "done" - On the other hand - it's another thing "done". So now I guess I have to take his number out of my phone - this makes me cry... I don't know why - it just does.
Next, pick up Kid from Doctors office and have to zoom home to change for a soccer tourny game... Then, the Kid says, my friend needs to eat some dinner - grrrrr (because of course we had to have a witness to all this madness) - o.k., But - I have a conference call at 6:30 p.m. with California and my sweet new friend Sarah to discuss a Radio interview we are getting ready to tape for WDOK in about 10 days... But, hey, I figure - I can let the Kid drive - she passed her class, has had her temps for 6 months - it's all good - She'll drive and I'll have my phone conference in the car - this should work, right! Um, NO... after we pull into Sheets for a very healthy dinner for the Kid's friend - the Kid decides that it would be a GREAT idea to pull out into traffic - not cutting off 1 car - but crossing two lanes & cutting off 2 cars... needless to say the folks on my conference call received quite an ear full... I got off the conference call immediately and was just happy to get to the fields! Time to sit outside & watch some soccer & study my Pancreatic Cancer Action Network Facts - and it was beautiful outside! The soccer game was WON - and the Kid won't be driving me again for a while... Finally got home about 9 p.m. at night - and instead of dinner - I drank 3 beers.
The End. Happy, Safe Memorial Day Weekend - Hug a Vet - they make our life style possible!
Earlier in the day I was excited because I received notification that Ed's cell will finally be disconnected. However, T-Mobile cannot follow the simplest of instructions (yet again) to turn off Ed's phone / leave mine on and put the bill in my name.... I would appreciate comments regarding the difficulty of this... If you all understand the following instructions, I'd appreciate you letting me know, cause it seems fairly simple to me?!... I could not have spelled it out any more clearly - AND this was per T-Mobile's instructions I might add:
1) Turn Off Phone # (216) 555.5555 - person connected to phone deceased - see attached death certificate and obituary!
2) Put Bill in the name of ME
3) DO NOT mess with Phone # (440) 555.5555
(O.K., let's face it - I worded my fax a bit more professionally - but really it WAS that clear and simple)
Of Course, they turned off MY phone - and left Ed's on... last time I dealt with T-Mobile, right after Ed passed, they gave his number a new 2 year plan - my dead fiance' had a new 2 year contract... I just wanted his phone "on" for at least 6 months so I could make sure all creditors & what-not could be directed to his estate attorney... What a nightmare. They did, however, manage to get the bill to my address so I could continue to pay it..... funny how when it came to the money they were right on!
So, I leave work - can't call the Kid cause I realize half way home that MY phone is turned off - rush to pick her up to get her to a Doctors appointment at 5 p.m. - get to the Dr.'s office and practically throw her out of the car so I can speed off to the T-Mobile store in my community... all so annoying... Anyway, Happy ending (oh, that sounds dirty)! WITH A HUGE Shout Out to the T-Mobile Store in Strongsville Ohio for working with your own customer service people, getting my phone turned back on and finally disconnecting Ed's phone... It was bitter-sweet.... On one hand, it's another thing "done" - On the other hand - it's another thing "done". So now I guess I have to take his number out of my phone - this makes me cry... I don't know why - it just does.
Next, pick up Kid from Doctors office and have to zoom home to change for a soccer tourny game... Then, the Kid says, my friend needs to eat some dinner - grrrrr (because of course we had to have a witness to all this madness) - o.k., But - I have a conference call at 6:30 p.m. with California and my sweet new friend Sarah to discuss a Radio interview we are getting ready to tape for WDOK in about 10 days... But, hey, I figure - I can let the Kid drive - she passed her class, has had her temps for 6 months - it's all good - She'll drive and I'll have my phone conference in the car - this should work, right! Um, NO... after we pull into Sheets for a very healthy dinner for the Kid's friend - the Kid decides that it would be a GREAT idea to pull out into traffic - not cutting off 1 car - but crossing two lanes & cutting off 2 cars... needless to say the folks on my conference call received quite an ear full... I got off the conference call immediately and was just happy to get to the fields! Time to sit outside & watch some soccer & study my Pancreatic Cancer Action Network Facts - and it was beautiful outside! The soccer game was WON - and the Kid won't be driving me again for a while... Finally got home about 9 p.m. at night - and instead of dinner - I drank 3 beers. 
The End. Happy, Safe Memorial Day Weekend - Hug a Vet - they make our life style possible!
Sunday, May 20, 2012
4 weeks till PurpleStride
Well folks, it has been crazy in the Pancreatic Cancer Action Network world... Here in Cleveland we have so much going on this summer... Of course we have PurpleStride Cleveland coming up in less than 4 weeks... Ed's All Stars are rocking it! We have raised over $3,000 at this point, but I would be delirious if we hit the $5K mark again this year! No donation is too small... www.purplestride.org/cleveland ... Join us for this incredible day of hope and inspiration and give the next generation a cure! Ed's All Star Dream Team would love your support!
Just think - if 10 people who read this donate $10 - That $100 will make a difference!
Personally, I will be traveling to Washington, D.C. June 25 & 26 for Advocacy Day and support the Pancreatic Cancer Action Network while representing Ohio... Learn more here: http://www.pancan.org/section_get_involved/advocate/advocacy_day_2012/index.html
You can call your State representatives on Tuesday, June 26 from the comfort of your home and help change the future!
It really doesn't get any easier than that.
We are also gearing up for Purple at Progressive, a day of awareness with the Cleveland Indians! Sunday, August 26 against the New York Yankees at 1:05. This will be another Cleveland milestone in the fight against Pancreatic Cancer. I am beyond excited to bring our fight to major league baseball! Click on the link to see more details & order your tickets: http://www.pancan.org/section_get_involved/events_fundraising/event_details.php?id=2074
And lastly, on September 30, 2012 ... It will be our PurpleLight Vigil of Hope to honor all who battle, have won their battle and to honor those that have lost their battle to this Living, Breathing Monster. We are considering the Tremont Area in Cleveland at this time, which will make for a beautiful setting to remember our loved ones!
On a personal note, the Kid will make her Confirmation on Wed. and fulfill her promise to Ed to complete her sacraments. Our church has traditionally confirmed in the 10th grade, which actually had been kind of nice - as these kids really are "young adults". After this year, they will switch to 8th grade, which is more traditional - but I loved seeing all the Kids class mates from St. Mary's and it was nice for them to reconnect as they have all gone to so many different high schools. She had an outstanding year in school and will officially be a Junior as of tomorrow! Now she just needs to get a job to supplement that baby-sitting income!
Happy summer folks... I miss Ed every day and will fight the battle for him, which was what he asked of me... And I am glad to do it! MK
Personally, I will be traveling to Washington, D.C. June 25 & 26 for Advocacy Day and support the Pancreatic Cancer Action Network while representing Ohio... Learn more here: http://www.pancan.org/section_get_involved/advocate/advocacy_day_2012/index.html
You can call your State representatives on Tuesday, June 26 from the comfort of your home and help change the future!
It really doesn't get any easier than that.We are also gearing up for Purple at Progressive, a day of awareness with the Cleveland Indians! Sunday, August 26 against the New York Yankees at 1:05. This will be another Cleveland milestone in the fight against Pancreatic Cancer. I am beyond excited to bring our fight to major league baseball! Click on the link to see more details & order your tickets: http://www.pancan.org/section_get_involved/events_fundraising/event_details.php?id=2074
And lastly, on September 30, 2012 ... It will be our PurpleLight Vigil of Hope to honor all who battle, have won their battle and to honor those that have lost their battle to this Living, Breathing Monster. We are considering the Tremont Area in Cleveland at this time, which will make for a beautiful setting to remember our loved ones!
On a personal note, the Kid will make her Confirmation on Wed. and fulfill her promise to Ed to complete her sacraments. Our church has traditionally confirmed in the 10th grade, which actually had been kind of nice - as these kids really are "young adults". After this year, they will switch to 8th grade, which is more traditional - but I loved seeing all the Kids class mates from St. Mary's and it was nice for them to reconnect as they have all gone to so many different high schools. She had an outstanding year in school and will officially be a Junior as of tomorrow! Now she just needs to get a job to supplement that baby-sitting income!
Happy summer folks... I miss Ed every day and will fight the battle for him, which was what he asked of me... And I am glad to do it! MK
Wednesday, May 9, 2012
MetroHealth electrophysiologist Rosenbaum passes away
Another brilliant Cleveland Physician lost to Pancreatic Cancer. When Steve Jobs and someone who studied at Harvard can't fight this disease, how can any of us really.
MetroHealth electrophysiologist Rosenbaum passes away
What is it truly going to take to wake up the government here in the US, and, the rest of the world.
How many have to die in a single year to make it worth paying attention to. I guarantee you if a President or his wife was diagnosed with PC - maybe then something would change?
After losing someone I considered a friend this week (a 49 year old ANGEL, Wife and Mother), I am pretty raw emotionally... this story just kind of set me off.
When brilliant minds with loads of cash can't win the battle what real hope does that leave the rest of us normal schmucks, seriously?!
I think I'm going to file a law suite against the NCI for ignoring our disease... I mean, is legal action all anyone understands anymore - I am so frustrated on this day, so frustrated.
So Please - won't you help us raise money to fund research and support the patients/families/caregivers fighting this nightmare of a disease?! www.purplestrid.org/cleveland - pick a team - any team - I don't really care - just get involved or make a donation.
Next post will be happier, I promise! Peace - MK
MetroHealth electrophysiologist Rosenbaum passes away
What is it truly going to take to wake up the government here in the US, and, the rest of the world.
How many have to die in a single year to make it worth paying attention to. I guarantee you if a President or his wife was diagnosed with PC - maybe then something would change?
40 Years With No Change ....
4 0 Y E A R S ... W I T H ... N O ...
C H A N G E ....
After losing someone I considered a friend this week (a 49 year old ANGEL, Wife and Mother), I am pretty raw emotionally... this story just kind of set me off.
When brilliant minds with loads of cash can't win the battle what real hope does that leave the rest of us normal schmucks, seriously?!
I think I'm going to file a law suite against the NCI for ignoring our disease... I mean, is legal action all anyone understands anymore - I am so frustrated on this day, so frustrated.
So Please - won't you help us raise money to fund research and support the patients/families/caregivers fighting this nightmare of a disease?! www.purplestrid.org/cleveland - pick a team - any team - I don't really care - just get involved or make a donation.
Next post will be happier, I promise! Peace - MK
Friday, May 4, 2012
45 Days to PurpleStride Cleveland - THEN... D.C.
O M G.......... Less than 45 Days until We Turn Our Zoo Purple! PurpleStride Cleveland 2012 - www.purplestride.org/cleveland - I am so excited to celebrate the love of my life and honor all who are/have battled this monster of a disease, their families & caregivers!
And then, after PurpleStride, I am off to Washington, D.C. to make Ed's voice heard on the hill along with over 500 average citizens fighting to make a difference!
Back in November of 2010, when we were hopeful, before Ed's surgery was canceled, this was one of the things he desperately wanted to do - make it to D.C. for Advocacy Day - it wasn't to be....... But you bet your lilly-white behind - He Will Be Heard!
I know, I know - You all want me to shut up about it already....... NOT gonna happen! I will push & push & push until the Government and the NCI recognize the need to step up the fight against this horrific disease. In 53 days I will be in Washington, D.C. to encourage our countries leaders to pass the Pancreatic Cancer Research and Education Act... Here it is in a nutshell:
Things need to change - Things need to change NOW. Just this week there were two horrific stories in the news, one about a Kindergarten student in Southern Illinois facing Stage IV pancreatic cancer, and another, about a young girl - 17 yrs. old - losing her battle with Pancreatic Cancer... In one week these two stories broke... This disease needs major attention - this disease really does need AWARENESS. It IS the silent killer and we need the government and the medical community to step up and pay attention!
I have never been more proud to be a part of any organization (well, maybe when I had my first job at Memphis Kiddie Park when I was 15?!) .... The Pancreatic Cancer Action Network is going to make the difference - we will be the voice of change - Know It... Fight It... End It... Ya know what, I have a big ol' mouth and a big ol' attitude and I intend to use it.
Edward is missed so much that there are not enough words to describe it. But I refuse to let this gentle, giving, caring soul be forgotten... He was the most incredible man and I had the honor and privilege to know and love him deeply. Yesterday I had to right a small paragraph about his journey and battle with this disease - it brought back so many emotions - most especially upsetting was thinking about the night we received the news that his surgery was canceled - It made me cry a lot yesterday. But not today - today it's about PurpleStride and getting ready for Washington.
Edward James, you live in so many of our hearts and I promised you I'd fight - and I am... Now, if we could just get your damn team to double digits, I would feel like we accomplished your goal for PS2012! So, out there in cyber-space... consider joining our team or making a small donation... Ed's All Star Dream Team - www.purplestride.org/cleveland!
Peace & Good Health - MK
What a Handsome Man..... RIP Baby - Hope you are enjoying that Rock 'N Roll Heaven! Me xoxo
And then, after PurpleStride, I am off to Washington, D.C. to make Ed's voice heard on the hill along with over 500 average citizens fighting to make a difference!
Back in November of 2010, when we were hopeful, before Ed's surgery was canceled, this was one of the things he desperately wanted to do - make it to D.C. for Advocacy Day - it wasn't to be....... But you bet your lilly-white behind - He Will Be Heard!
I know, I know - You all want me to shut up about it already....... NOT gonna happen! I will push & push & push until the Government and the NCI recognize the need to step up the fight against this horrific disease. In 53 days I will be in Washington, D.C. to encourage our countries leaders to pass the Pancreatic Cancer Research and Education Act... Here it is in a nutshell:
Pancreatic Cancer Research and Education Act
(S. 362 / H.R. 733).
o
This legislation would require the National Cancer Institute (NCI) to develop a long-term and comprehensive strategic plan for pancreatic cancer research which would help us reach our goal of doubling survival rates by 2020.
Things need to change - Things need to change NOW. Just this week there were two horrific stories in the news, one about a Kindergarten student in Southern Illinois facing Stage IV pancreatic cancer, and another, about a young girl - 17 yrs. old - losing her battle with Pancreatic Cancer... In one week these two stories broke... This disease needs major attention - this disease really does need AWARENESS. It IS the silent killer and we need the government and the medical community to step up and pay attention!
I have never been more proud to be a part of any organization (well, maybe when I had my first job at Memphis Kiddie Park when I was 15?!) .... The Pancreatic Cancer Action Network is going to make the difference - we will be the voice of change - Know It... Fight It... End It... Ya know what, I have a big ol' mouth and a big ol' attitude and I intend to use it.
Edward is missed so much that there are not enough words to describe it. But I refuse to let this gentle, giving, caring soul be forgotten... He was the most incredible man and I had the honor and privilege to know and love him deeply. Yesterday I had to right a small paragraph about his journey and battle with this disease - it brought back so many emotions - most especially upsetting was thinking about the night we received the news that his surgery was canceled - It made me cry a lot yesterday. But not today - today it's about PurpleStride and getting ready for Washington.
Edward James, you live in so many of our hearts and I promised you I'd fight - and I am... Now, if we could just get your damn team to double digits, I would feel like we accomplished your goal for PS2012! So, out there in cyber-space... consider joining our team or making a small donation... Ed's All Star Dream Team - www.purplestride.org/cleveland!
Peace & Good Health - MK
What a Handsome Man..... RIP Baby - Hope you are enjoying that Rock 'N Roll Heaven! Me xoxo
Thursday, April 26, 2012
Moving Forward
This blog is a MUST read! Michelle can sum-up words so beautifully and, I swear, she is sometimes picking my brain.
http://themerimeegirls.blogspot.com/2012/04/ugly-box.html
From a site I enjoy: Giggle Palooza
http://themerimeegirls.blogspot.com/2012/04/ugly-box.html
From a site I enjoy: Giggle Palooza
"
A friend pointed out a quote to me this week (which was used by someone in a means to shame me) and it made me curious as to who actually wrote the quote... Turns out it showed up as Author Unknown, but I thought I would expound on it and add the rest of the quote. Because regardless of which side of the battle you are on - it's a good quote. And, I don't feel shame, because like the person who posted the quote, I feel that I am right and they are wrong?! It is a lose-lose for sure.
Standing for what you believe in, regardless of the odds against you, and the pressure that tears at your resistance, ...means courage
Keeping a smile on your face, When inside you feel like dying, for the sake of supporting others,
...means strength
Stopping at nothing, and doing what's in your heart, you know is right, ...means determination
Doing more than is expected, to make anothers life a little more bearable, without uttering a single complaint, ...means compassion
Helping a friend in need, no matter the time or effort, to the best of your ability, ...means loyalty
Giving more than you have, and expecting nothing but nothing in return, ...means selflessness
Holding your head high, and being the best you know you can be when life seems to fall apart at your feet, facing each difficulty with the confidence that time will bring you better tomorrows, and never giving up, ...means confidence.
Keeping a smile on your face, When inside you feel like dying, for the sake of supporting others,
...means strength
Stopping at nothing, and doing what's in your heart, you know is right, ...means determination
Doing more than is expected, to make anothers life a little more bearable, without uttering a single complaint, ...means compassion
Helping a friend in need, no matter the time or effort, to the best of your ability, ...means loyalty
Giving more than you have, and expecting nothing but nothing in return, ...means selflessness
Holding your head high, and being the best you know you can be when life seems to fall apart at your feet, facing each difficulty with the confidence that time will bring you better tomorrows, and never giving up, ...means confidence.
Monday, April 23, 2012
My Blog - My Opinions
Just to reiterate - this is MY blog - Ed endorsed it and encouraged me to keep it going. I try not to comment about his life where it did not pertain to Me and My family (a few melt downs & rants about some bad behavior, sure - am I proud, no). He had another life - he lived two separate lives - I was not part of his "7 days in his home town" - that would be "their" story. Every other week he lived in another city - lived another life - was a parent & community member in that city... I missed him on those weeks - but unless we had something special planned - I did not see him on those weeks; When he was sick, I would see him on those weeks because it was me, or another one of his friends, that took him to treatment. So, as for the new accusation about me "stealing" his time & taking him away - um, yeah, that's really not accurate. When accusations are made, I will defend myself and my family. I recently did take a slight step back and did post something negative, I have removed it and will try and refrain from that moving forward. The bottom line - we need to fight this monster of a disease so that the next generation can have early detection, improved medication and increased survival rates...
If You Do Not Like This Blog.... It's Easy.... Do Not Read It.
All Pictures posted here also belong to me - you have your own pictures and opinions, feel free to start your own blog which I will gladly not read.
If You Do Not Like This Blog.... It's Easy.... Do Not Read It.
All Pictures posted here also belong to me - you have your own pictures and opinions, feel free to start your own blog which I will gladly not read.
Friday, April 20, 2012
Thursday, April 5, 2012
Opening Day And Shocker Tour '11
Ah, Opening Day for the Cleveland Indians...
How happy would my sweet Edward James be today... He had this awesome way of saying that Football was his favorite sport/season, that was, right up until Baseball season rolled around... he really was equally happy about both. He followed football much closer but he loved the weather that came with baseball season... AND, He did love his Tribe! He loved sitting at a game having the sun beat down on him. He was old school - no sunscreen, he'd say... "gotta get a good base burn going so I can tan better" ... I would argue with him endlessly about sunscreen when he would go fishing in the morning out at the cottage. I mean, even when he was terminal last spring/summer and we knew we were close to the end - I would still harp on him about sunscreen - he would just look at me, shake his head, laugh and walk away with his fishing pole & tackle box... God I miss him...
How many Tribe games did we see in our almost 6 years together - hmmm, I'd guess a little more than 15 ... Not enough, that's for sure. I will probably try and go to a few games this year because I just love the atmosphere at a game... You bet I'll be at the Sunday, 8.26.2012 game against the NY Yankee's... It's going to be an EPIC day at Progressive Field... Stay Tuned for Details on THAT game! Let's just say, you'll be seeing a "sea" of purple at the ballpark that afternoon!!!
I think how Ed would have loved the winter of 2012... Um, because there wasn't one! I think of how he would have loved watching the Child play rec basketball this past winter and how he would be excited that her spring Soccer season was ready to start. I think of how he'd be chompin' at the bit to get out to the cottage and get things ready for a summer of fishing and cocktails by the lake he loved so much... He'd be all pumped up for a couple trips over to Put-In-Bay... I think too, how much he would have loved to have been on the trip to Chicago I took two weeks ago for Community Outreach Leadership Training (COLT) for The Pancreatic Cancer Action Network ... It was inspiring; And moving; And educational; And emotional - I think of how he would have loved being with the other Survivors (and Ed would have fit right in with a couple gent's who had me laughing every time I saw them...) He would have loved it all... Did I mention, I miss him.
Here's the thing I've been thinking about as we gear up for PurpleStride Cleveland 2012.... When Ed was sick, he made it abundantly clear that The Pancreatic Cancer Action Network, THIS Non-Profit Organization, needed support. It was his mission to support them until he could not anymore.... Then he made me promise that I would continue his mission when he went away - um, duh - of course! So, if you are one of the countless people who ever asked Ed, while he was here, "What can I do for You? Please ask"... I am asking you on behalf of Ed, and all the Pancreatic Cancer victims and patients still fighting, please make a donation to our event - $5, $10 - every single penny will count in finding an early detection tool and a cure for Pancreatic Cancer - http://www.purplestride.org/cleveland ! We Are Ed's All Star Dream Team and we sure could use your support.
Here is my sweet Edward last April - almost exactly one year ago - doing what he loved most (well, almost) - Fishing and being with his friends... who were more than that - they were (and are) his brothers... To The Boys of Key West and "The Shocker Tour 2011"! Michael, Rob, Johnny, John, Greg, Greg and Elvis... Your unconditional Love and Support of Edward lives in my heart and you proved that blood doesn't make family - LOVE makes family!
As always, Peace... MK Go Tribe!
Michael - the picture above is just for you.... The ones below are for everyone else.
Oh, Sweetie - you can do better...
Oh, Yes, Much better
Ed and his need to take self-portraits - Dear Lord Honey, really?? (Yes, you are ver handsome my love!)
Hello Monkey!
Hanging on the balcony...
What is Key West without a trip to Sloppy Joe's... Sloppy Joe's, Sloppy-Sloppy Joe's!
RIP my Sweet Edward James... Always on my mind, forever in my Heart. xo
How happy would my sweet Edward James be today... He had this awesome way of saying that Football was his favorite sport/season, that was, right up until Baseball season rolled around... he really was equally happy about both. He followed football much closer but he loved the weather that came with baseball season... AND, He did love his Tribe! He loved sitting at a game having the sun beat down on him. He was old school - no sunscreen, he'd say... "gotta get a good base burn going so I can tan better" ... I would argue with him endlessly about sunscreen when he would go fishing in the morning out at the cottage. I mean, even when he was terminal last spring/summer and we knew we were close to the end - I would still harp on him about sunscreen - he would just look at me, shake his head, laugh and walk away with his fishing pole & tackle box... God I miss him...
How many Tribe games did we see in our almost 6 years together - hmmm, I'd guess a little more than 15 ... Not enough, that's for sure. I will probably try and go to a few games this year because I just love the atmosphere at a game... You bet I'll be at the Sunday, 8.26.2012 game against the NY Yankee's... It's going to be an EPIC day at Progressive Field... Stay Tuned for Details on THAT game! Let's just say, you'll be seeing a "sea" of purple at the ballpark that afternoon!!!
I think how Ed would have loved the winter of 2012... Um, because there wasn't one! I think of how he would have loved watching the Child play rec basketball this past winter and how he would be excited that her spring Soccer season was ready to start. I think of how he'd be chompin' at the bit to get out to the cottage and get things ready for a summer of fishing and cocktails by the lake he loved so much... He'd be all pumped up for a couple trips over to Put-In-Bay... I think too, how much he would have loved to have been on the trip to Chicago I took two weeks ago for Community Outreach Leadership Training (COLT) for The Pancreatic Cancer Action Network ... It was inspiring; And moving; And educational; And emotional - I think of how he would have loved being with the other Survivors (and Ed would have fit right in with a couple gent's who had me laughing every time I saw them...) He would have loved it all... Did I mention, I miss him.
Here's the thing I've been thinking about as we gear up for PurpleStride Cleveland 2012.... When Ed was sick, he made it abundantly clear that The Pancreatic Cancer Action Network, THIS Non-Profit Organization, needed support. It was his mission to support them until he could not anymore.... Then he made me promise that I would continue his mission when he went away - um, duh - of course! So, if you are one of the countless people who ever asked Ed, while he was here, "What can I do for You? Please ask"... I am asking you on behalf of Ed, and all the Pancreatic Cancer victims and patients still fighting, please make a donation to our event - $5, $10 - every single penny will count in finding an early detection tool and a cure for Pancreatic Cancer - http://www.purplestride.org/cleveland ! We Are Ed's All Star Dream Team and we sure could use your support.
Here is my sweet Edward last April - almost exactly one year ago - doing what he loved most (well, almost) - Fishing and being with his friends... who were more than that - they were (and are) his brothers... To The Boys of Key West and "The Shocker Tour 2011"! Michael, Rob, Johnny, John, Greg, Greg and Elvis... Your unconditional Love and Support of Edward lives in my heart and you proved that blood doesn't make family - LOVE makes family!
As always, Peace... MK Go Tribe!
Oh, Sweetie - you can do better...
Oh, Yes, Much better
Ed and his need to take self-portraits - Dear Lord Honey, really?? (Yes, you are ver handsome my love!)
Hello Monkey!
Hanging on the balcony...
What is Key West without a trip to Sloppy Joe's... Sloppy Joe's, Sloppy-Sloppy Joe's!
RIP my Sweet Edward James... Always on my mind, forever in my Heart. xo
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