On June 26, we (over 600 people, and I) descended upon Capitol Hill to show our muscles, and push for the Pancreatic Cancer Research and Education Act.
And we are doing great! We have the support of over 275 representatives, that’s almost 2/3 of the house!
But while we have tremendous support, it doesn’t guarantee that our bill will be passed. Many endeavors can have great backing, but never even make it to the floor for a vote. Argh!
And so we are taking nothing for granted, and leaving nothing to chance. We are pushing hard. We need to get this bill passed this year!!!
And to that end, Pancreatic Cancer Action Network and I have done our best to make this Act visible to the public, and hopefully, garner so much support that it can’t be ignored. So, prior to, and during our Advocacy Day this past June 26th on Capitol Hill, we had our “3 Week Challenge to Victory,” “National Call-In Day,” and did interviews (if you want to watch, or read some of these interviews, go to my June 2012 links at http://www.lisaniemiswayze.com/updates-and-events/).
Everyone always thanks me for my efforts, and I appreciate that. But I am very visible… The people I am really in awesome admiration of are the over 600 who came to Washington and those who had to stay at home, but still raised their voice in support. People whose names you’ll never know.
It takes a particular kind of spirit to do this. It’s not a glamorous disease. In fact, it can be downright depressing, and many who have gone through it, want to get as far away from this terribly sad illness as they can. It takes an extra “something” to hang in there.
I was so moved as I watched these intelligent, well-spoken, motivated, and emotional people walk into this nation’s Capitol rooms to advocate for this bill.
They brought pictures of their lost loved ones, stories of their fight, and how their loved ones deserved the chance that, unfortunately, was not there to give to them.
I met two of these people coming out of our first meeting with smiles, and bright eyes. They had gotten there early, and were already done! The verdict? The representative signed on in support!
Moving to another appointment, I sat in a room with a lovely couple from Albuquerque. The wife told the aide (who took the meeting for the Senator) about her young, military decorated brother who lost his life to pancreatic cancer, and showed pictures of him: surfing with a silly smile, when he was sick with an IV in his arm, and being laid to rest in a casket covered with an American flag. She fought through her tears to tell his story, and it was very tough to be in the room without breaking into sobs with her. Oh, my! This is my first meeting and I’m already emotionally exhausted! How I’m going to get through this day??
After the woman had finished talking, the aide kindly explained that the Senator did not want to sign on in support the bill, but would talk to the National Cancer Institute to ask why only 2 % of its annual budget is going towards pancreatic research.
As she talked, I felt my cheeks start to burn. I mean – Pancreatic cancer is the 4th leading cause of cancer deaths. Of the top 5 it is the most fatal. There is no meaningful treatment options for it, or early detection. There’s only a 6% five year survival rate. Average life expectancy after diagnosis is 3-6 months. Since my husband died these statistics still remain the SAME. And they have remained the SAME for over 40 years!!!
Don’t the statistics speak for themselves? But sure, go ask them. I’m sure you’ll make meaningful progress (I’m being sarcastic here, could you tell?).
A savvy doctor was in the room also, and he countered with such excellent information (along with startling medical info), that our issue seemed very clear. I could have kissed him! But alas… The aide could only stick to what the Senator said, but assured us she would pass along our information.
It’s a long day on the Hill, one that is curiously laborious, tedious, and yet emotional. We spend lots of time waiting in outer offices, waiting in halls, enduring epic walks to other meetings for the opportunity to sit down for a few minutes to promote and garner the important support we need for our cause. And then, more long walks (even though I brought walking shoes to change into, I got blisters on my feet that, 4 weeks later, are finally starting to fade!)
But it’s worth it when you walk into a room, like we did with CA Representative Kevin McCarthy, and he not only offers his support, but suggests he speak to Chairman Upton about getting this on to the floor for a vote! As he said simply, “It’s going to help people, right?” Dumbfounded with our good luck, we nodded. “But, please continue, I’d like to hear your stories,” he asked. And out comes the precious photos, and the grateful opportunity to share – The greatest husband in the world that died, the beautiful, admired Kindergarten teacher whose young students made a garland of photos to honor her at her grave… Ah! These people care so deeply!
And we set off for another meeting, with another group of advocates…
I met so many people who had come from all over the country, at their own expense, to advocate for this bill – people who were “in the fight” themselves, and friends and families of loved ones who were fighting, or had perished. One thing’s for sure. And I think all that were there know this to be true – It’s up to us to stop the destructive path of this disease. And I saw in their eyes, the same thing that I feel – that I will continue this fight for my husband. It is my love that I put on the line here for him. And I put that love on the line for all the others in this fight, too, because I know the depth of their feelings for their loved one. And from first-hand experience, I know what a precious gift life is for someone who wants to live.
In September, a small group of us (doctors, researchers, staff from Pancreatic Cancer action Network, and me) are going back to Capitol Hill for a final push. Wish us luck. Keep calling your representatives. We’re going to push this one over the top.
Hi Lisa – I met you at an event in Phoenix with my sister (Brandeis Book Fair). Just wanted to say that this is a great post and the effort that you and everyone made on behalf of Pancan is wonderful. I volunteer for Pancan too – lost my mom to PC. It is a terrible disease as you know and I hope that our efforts will be recognized and soon!
Thank you, Michelle. It was great meeting you and your sister in Phoenix. And thank you for your work on behalf of PanCan! We’re all on the same team.
Karen Backus says
Well, “the third time is a charm,” and I sincerely hope this is true!!!!
Only one request – please let us know how the results of your final push on Capitol Hill goes!!!
We are, for sure, doing our part!!
Love and respect you,
Karen (and Gary too)
Susan Damante says
This is SO amazing! What a proud purposeful life you have found yourself leading! Luv Suz Damante
Wow!!! Magnificent effort…
.any wonder you had to ‘play hookey’ for awhile. Lisa, you are so right that you are the ‘visible’ one in this and that is a double-edged sword because, on the one hand, your ‘visibilty’ opens doors and minds but it also makes it all so much harder on you to get through your own issues. You said that you felt like ‘Wonder Woman’ well you ARE!! I bet she would have gotten blisters too. I’m in Australia and can’t offer more than prayers and moral support for this amazing battle..but, please know that you have it. Raising the U.S. profile of this horrible disease will spin off all over the globe and help give hope to countless sufferers and their families…..In the meantime, catch you breath and regroup ready for September and remember – John Wayne was right about courage…Very best wishes Cherrylm.
WE LOST A AUNT AND HER DAUGHTER AND THEN HER SON ALL WITHIN 3 MONTHS OF ONE ANOTHER. MY SISTER WORKS IN ONCOLOGY AS A RN AND SHE SAID THAT THE MOST FRUSTRATING PART WHEN YOU HAVE PEOPLE COME IN FOR TREATMENT. THAT MOST OF IT IS JUST TO PROLONG THE BEST THEY CAN. BECAUSE BY THE TIME THERE ARE ANY SYMPTOMS THAT THE PERSON GOES VERY FAST. YOU ARE A STRONG WOMAN AND KICK SOME REAR WHEN YOU GO BACK IN SEPTEMBER. BECAUSE THESE PEOPLE WHO MAKE THE DECISION TO PASS OR NOT TO PASS. HOW WOULD THEY FEEL IF IT WAS ONE OF THEIR FAMILY MEMBERS OR FRIENDS, THAT HAD THIS BEAST OF A DISEASE WITH NO MERCY ON PEOPLE. I AM PROUD OF ALL THAT YOU ARE DOING AND I HAVE NO DOUBT THAT PATRICK IS LOOKING DOWN ON YOU TELLING YOU TO GIVE THEM HE_ _. GOOD LUCK YOU AND THE SEPTEMBER CREW WILL BE IN THROUGHTS AND PRAYERS. HAVE A BLESSED DAY. AND REMEMBER TO TAKE CARE OF YOURSELF.
thank you so much for your work. You and all the others out there. I really hope that this bill will be passed.
It is desperately needed.
I wish I could support you, but since I live in Germany the senators will propably not care a lot about my opinion……….
I don’t know if you are aware of the fact how important the work in the USA is for us in Germany. I lost my mother to pancreatic cancer earlier this year. I did a lot of research to try to help her and was shocked how far behind things we are in Germany. We don’t even have the very limited possibilities or support. There is actually just one hospital in Germany working with cyberknife. I checked the databases for clinical trials, and each time about 20 or so hospitals appeared in the USA, and maybe one or two in Germany……….We have nothing like Pancan in Germany, and they really helped me a lot………because of my English I was able to use the material and online support for my mother, but many others don’t have that chance.
I could continue this list on and on…………it is so sad,
So thank you all so much for your work, you are not only fighting for pancreatic cancer patients in the USA, but also for patients all over the world, who will maybe one day benefit from your progress.
Wish you all the best and I keep fingers crossed for the bill.
Mette Pedersen says
Well done! That is so great that your (and other volunteers) effort is paying of. I wish I could help. But I live in Denmark.
I’m a cancer survivor, 12 years ago at the age of 20, and not pancreatic cancer. But still cancer. The tumor was found just in time for me to have it surgically removed so I didn’t need chemotherapy, but radiation treatments six times a week for about two months. It was tough!
I had a large cyste on my neck and when the doctors removed it they discovered the cancer cells. The tumor was in my throat near my nose, so it had spread to my neck close to my lymph nodes. If it weren’t the cyste, who knows if the cancer would’ve been discovered in time.
I have a rather big scar on my neck where the cyste was, and people sometimes ask me if it bothers me cosmetically. ” Absolutely not”, I answer, “this scar is my ‘life-line’, without it I could’ve been dead!”
I sometimes fear that the cancer might come back, and my two kids will lose their mother. I can’t bare the thought. But hey, so far so good! :0)
I do what I can to help financially for children cancer research and events for children with cancer. I wish I could be a volunteer in your PanCan. It’s such a horrible disease.
Keep up your good and strong work, Lisa! But also, remember to breathe and play hookey when you need to. <3
Lots of love from Mette
Estoy realmente admirada por la labor que usted y toda esta gente están haciendo luchando contra el cáncer de páncreas. No se desanimen ni pierdan la esperanza. Es muy triste que no se haya avanzado casi nada desde hace 40 años.
La unión hace la fuerza, y estoy segura de que lo conseguiran. Mi abuela tambíen murió de esta enfermedad. Aunque solo puedo darle mi apoyo moral, ya que vivo en España, naturalmente lo tiene.
¡Ánimo Lisa! ¡Usted y toda su gente pueden conseguirlo!
Thank you for sharing this with us!
What a fight! I hope, with all my heart, and forever, will be won, as soon as possible!
I know that the research in the entire world, it’s doing a small step.
We hope to arrive at a definitive cure as soon as possible.
I read recently of other young lives taken away from this terrible disease, and it can’t go on like this.
God bless you, and all the people who fight like you.
A big hug and bye from Italy!!
Mette Pedersen says
Well done! That is so great that your (and other volunteers) effort is paying of. I wish I could help, but I live in Denmark.
I`m a cancer survivor, 12 years ago at the age of 19/20, not pancreatic cancer, though, but still cancer. The tumor was found just in time for me to have it surgically removed so I didn`t need chemotherapy, but I had radiation treatments six times a week for about two months. It was tough!
I had a large cyste on the side of my neck, and when the doctors removed it, they discovered the cancer cells. The tumor was in my throat near my nose and mouth, so it had spread to my neck close to the lymph nodes. Luckily it was discovered in time. If it weren`t for the cyste, who knows if the cancer would`ve been caught in time.
I have a rather big scar on my neck where the cyste was, and people sometimes ask me if it bothers me cosmetically. “Absolutely not!” I answer, ” This scar is my “life-line”, without it I could`ve been dead!”
I sometimes fear that the cancer might come back, and my two kids will lose their mother. I can`t bare the thought. But hey, so far, so good! :o)
I do what I can to help financially for children cancer research and events for children with cancer. I wish I could be a volunteer in your PanCan. It`s such a horrible disease.
Keep up your good and strong work! Both you Lisa and all the “non-famous” volunteers. Your strenght is inspirering!
Remember to breathe and play hooky when you need to. <3
Lots of love from Mette
Julie Clements says
You have been doing some fantastic work you just keep on in there and you and all the supporters will get heard and I pray that you get the results you are all fighting for.
Hope all goes well lots of love Lisa you are a wonderful lady who will forever be in our hearts God Bless love julie xxxox
Michael Brown says
Thank you Lisa for standing up for us that cannot fight at this time. I are in a battle to save my wife life from Pancrectic cancer.
Great to hear from you Lisa and all the wonderful work you and others are doing to pass this bill, I wish you lots of luck in September. Please keep us posted, Patrick would be so proud of you Lisa take care lots of love your way!xoxo <3
Nadine Wood says
Wow Lisa, what a day! looks awesome with so many people on the steps. Although it was a physically exhausting day the adrenaline rush you must have felt had to be great too, no?. It must have felt wonderful being a part of all this, making a difference. So sorry I couldn’t make it. When you do something for such a worthy cause, the gratification you feel is almost rejuvenating isn’t it? I’m sure you felt wipe when it was all over.
You did a selfless thing by lending you time and famous face to a much needed cause. Thank you, you never cease to inspire us. I. Know Patrick was with you evry step of the way sayin ” go lady, let’s kick some a*#”. Btw you looked gorgeous in the HLN eve express news and love the pic of Patrick on the split screen. Together we can knowitenditfightit, YEAH. Keep up the great work. XoxoNadine
Jackie Bush Holcomb says
We all are working very hard to end this horrible disease and appreciate your support. I am proud to say I was right there with you with my best friend Joy Kimble Kropiewnicki in memory of her brother Mark Williams. Peace, love and prayers to you and all of our friends and supporters who are in the fight.
Jackie Bush Holcomb
Ellen Haines says
YOU GO, GIRL! Lisa, you are one superwoman! Good luck with your cause. It looks like you might’ve woken up some of our public servants in Washington – They need to put funds (our tax money) into research projects for the people!
Simone Donhauser says
Thank you for your great Work and for your beautiful Pictures.
my finger over cross for the fight.
Love Greetings from Amberg (Germany)
That’s great what all these people do, anonymous or not. I wish you heartfelt good luck for the next step in September.
Lindsay Luckadoo says
Great post, Lisa! And, wonderful pictures! SO happy to hear of the successes of Advocacy Day-I know I did my part from home (including wearing my purple scrubs to work)! 🙂
Sending tons of positive thoughts and prayers for the final push in September! We ARE going to get this passed…I just know it!!!
As always, much, much love to you! XXX
Joanna Kontos Evans says
What a fantastic, passionate amazing bunch of people you all are…Fingers, toes and everything else crossed that September goes brilliantly.
All I can say is love has no boundaries and lets hope and pray that the support needed to get this bill passed also has no boundaries.
Much love, support, and the greatest of respect always
William Fairless says
Hi again Lisa my friend, i loved looking at all the new photo’s and everyone including me are so proud of the awesome work you do and Patrick will be so proud of you too…
YOU ARE LOOKING GREAT AS USUAL, AND I AM SO PROUD OF YOU THAT YOU STAY HAPPY AND STRONG AND I THINK EVERYONE HAS FAMILY OR FRIENDS THAT HAD CANCER INCLUDING ME…
GOD BLESS FROM BILL, “THE NITE OWL FROM ENGLAND”, HAHAHAAA… TAKE CARE…XXX
As in other comments i said you, you deserved the best, because nobody in your situation make the fight that you are having, you’re a incredible and fighter woman and i’m proud of you, because you know the first hand all one feel when this disease coming up in your life , i know it too, and for this reason i tell you again that i always will be with you in this fight and with all the other people that suffer this illness. You has making a amazing and hard work with those meetings in the Capitol Hill in Washington. Thank you in my name and in the people’s name for your fighting for getting a victory in a few time.
A kiss for you and my best wishes dear as always for you.
lisa gostaria muito que seu livro fosse traduzido para o portugues quando chegará ao brasil. estou ansiosa pra ler.
Patricia T. says
Hi, Lisa! Thanks so much for all the hardwork you and so many other wonderful people are doing to stop this terrible disease. Good luck in September at Capitol Hill. I’ll make sure my representatives know how seriously this bill needs to get passed. You’re right, we have to push this to the top. Thanks so much for sharing your wonderful photos, interviews, and posts with everyone!
The best of luck and wishes, Patricia
Lanny Smith says
I’ve always been a big fan of the Patrick and Lisa duo (but I could never dance half as well)!
Should you ever find some downtime for reading, please check out my novel, THE RADICAL RIDE. You might find a subtle tribute to the both of you in this tale that reads like an action-thriller flick! Best always, Lanny
Like the title!
Lanny Smith says
Thanks for the note!
If you do get a chance to read THE RADICAL RIDE, please do so with an open mind. I’ve always sensed that as a talented artiste, you also have an open heart—so just enjoy it (and look for those “subtleties” I mentioned).
went today on people.com and read the headline that actor Ryan Buell has been diagnosed with PC. He is only 30 years old….. Wham, that´s far too young but isn´t it always too soon for having such a diagnose? We´re always thinking that we won´t be the one, but you´re never save…. I´ve never been seriously ill in my life – I´m asking myself – will there be one day the big bill for beeing so healthy? Damn, sometimes it would be good, beeing a ghost – you won´t ever have problems with your body….
I hope u are successful with your fight against this terrible disease – I´m sending a lot of positive power to you and your warriors – keep on fighting! In September you´ll know more – right? I think, that´s the perfect month for it – the circle will be closed….
Tonight , there is a fantastic ballet in the sky : it’s the night of the shooting stars.
After the bad weather of sadness, it’s time to take a meteor shower !
I ‘m sure that the falling stars are the signs from our departed friends, parents, husbands or children .And tonight, all those who left us are together to offer us this magical show.
A delicate way to tell us they don’t forget us , a beautiful way to show us they’ve received our love, our prayers, our messages and our …balloons.!
I will not miss it for anything!
My best thoughts for you all, dear bloggers
The best for you Lisa
Lovely. Thanks, L
Susan Brown says
Lisa, Thank you so much for all that you do to help find a cure for pancreatic cancer! S
Lisa, keep on fighting the good fight. I thought I would share a cheeky soundbite. Here goes…. let’s consider a group of baboons. They are the loudest, most obnoxious, and least intelligent of all primates. What is the proper collective noun for a group of baboons? Answer: a congress!
Your strength and poise is an inspiration to me.