PCAN Advocacy Day, Washington D.C.

June 20, 2017

Approximately 650 to 700 family members, current patients, and survivors of various lengths of time attended Pancreatic Cancer Advocacy Day in Washington, D.C. on Tuesday, June 20. I was with them. (Most arrived on Sunday June 18, and Monday was a training day, learning what to say, and not to say, to our representatives).

And, let me tell you, it was overwhelmingly moving to be among such a group of passionate and compassionate people.

Survivors that attended were post-diagnosis ranging from months to two men who are 17 year survivors, and over 100 women and men who are alive 5 years after diagnosis. Ten years ago, when Advocacy Day was started by PanCAN, there were no 5-year survivors.

Still, the survival rate for five years, in spite of improving from 5% to 9% due to funding for research, is not an encouraging number. Advocacy Day was designed to flood our representatives (senators and congresspeople) with people from all fifty states to ASK FOR FUNDING that at least keeps up with inflation. That is what we did on Tuesday.

The trip was worthy for the interaction with our elected officials, and it was also worthy for the many dedicated people I met, many of whom touched my heart. I made some friends, and met some of the people from my state who are involved in fundraising.

The senator from Rhode Island, Sheldon Whitehouse, holds this cause close to his heart, having lost family to pancreatic cancer. He spoke to our group on Tuesday morning, and is pushing for increasing funds for National Institutes for Health (NIH) to 36.2 billion and the National Cancer Institute (NCI), to 6 billion.   

He acknowledged the difficulties in the current political climate, but said many of our representatives still have sanity and a heart, so keep pushing and do not give up and do not let up on our elected officials. They do listen. We have to keep talking to them and make our voices heard, and share our emotional stories.

My group consisted of six of us from Connecticut for the two senator meetings, and three of us for our local representatives meetings. We needed to keep our stories brief (a minute to a minute and a half), but impactful and emotional, because that is what they remember at the end of the day, not the facts and figures.

We had a little poster board with pictures of our loved ones. I shared a brief summary of Emilee's journey from diagnosis to death. My story:

I am here because my wife Emilee, age 61, died 4 months ago from Pancreatic Cancer.

She lived 21 months from diagnosis to death.  She did NOT LIKE DOCTORS.  

She was diagnosed because her skin turned yellow due to tumor pressing on her bile duct.

CT scan showed tumor on the head of the pancreas, and metastases to Adrenal glands and Both lungs, stage 4B, inoperable.

She had multiple chemo rounds and she had every side effect known to medicine.

She was an artist who couldn’t do art due to extreme neuropathy in her hands and feet caused by chemo.

She endured:  tumor induced diabetes

                        bile duct stents

                        Intestinal stents

                        Gastric bypass to get food passed the tumor

                        Bilateral lung drains

                        Bile duct drain…..and finally,  she fell and Fx’d her LEFT hip during her last hospital stay, which rapidly hastened her death.


I am here because I want to save others from this horror.  

Emilee asked……two days before she died……her last words……”I want to go home….PLEASE take me home, can I go home now?”

Yes, it was emotional. I did not realize how much so, until I got home about 5 a.m. Wednesday morning. Then it all hit me.

One of the things I will miss most, in addition to sharing a common bond with so many of the people there, was the company of others for breakfast. Somehow, that felt like being part of a family. I told this to the people I was sitting with (Connecticut and Alabama folk), and no, I could not say that without getting teary eyed. And, that was okay.  


4 people like this post.
Nancy threw a punch at your cancer.
Jane, Kim sent you a hug.
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What a great summary! I am sure you felt empowered by being there with so many like minded peers (I can't think if that is the word). I find it absolutely amazing that there are survivors who have been around 17 years! It makes you think... Thank you for this Neal
my pleasure...i know many people cannot make such a trip...i am amazed at how many made it there..it is not easy to physically and logistically navigate the environment... I am sure there are so many more who would like to be able to go and give 'em hell....I felt like i was speaking for many many people when I spoke, so those of us there channeled the voices of all those who were not there physically....we put you there in spirit...with heart and soul...be sure of that... and yes it was empowering being a part of a large group of like minded and same purposed individuals...and yes...seeing some long term survivors was a hopeful (and teary) sight...I am glad to give you at least a little bit of the flavor of the experience... the least I could do for all of you... no matter what type of cancer...because we were asking for funds for NIH and NCI which is for all cancer research, even tho it was PanCAN sponsored event...
Thank goodness for advocates. When your fighting you just don't have time for advocacy too. This is a horrible disease that needs to cease.
of course you don't...and that is one of the reasons I felt so strongly about going..I felt like a delegate for ALL my friends here...and it is horrible...all the cancers are horrible...Dana Farber has gotten approval to do this 1 patient trial... i met the patient and his wife for whom they are conducting this trial...He is an amazing man..they said MSNBC did a story on him recently.. I will find his name on facebook and let you know
Ed Quinn and his wife is Jody D'Apuzzo Quinn...and she said she would be happy to talk to you
I had wanted to attend this event, but I still feel too emotional over the loss of my mother and having recently battled my own cancer. My husband and I do send in monies to PanCan to support research. I have lost so many family members to cancer over the years that it is a painful reminder when I attend cancer rallies. I feel we often leave out the funding to encourage the sciences in our schools which real is the beginning of research. Due to pushing for educational accountability we often do not realize that we stifle creative thinking which is the heart of new discoveries.
Thank you for taking the time and your own monies to help push for research funding. I am currently in a funded research prescreening for pancreatic cancer that uses an endoscopic ultrasound. I will go yearly for this procedure. It is covered through my insurance.It is not a fun way to be screened for cancer, but neither is a colonoscopy which found my anal cancer tumor.
I am sure you felt you had a common bond with your new formed family members. I pray you gain strength and support in numbers.
believe me, in addition to my own tears, there were many others there that were adding to the river of tears..but there was a lot of hope too...I agree about the funding of sciences in the schools and creative thinking being extremely important....

I am glad they at least have some way of screening you ...and thankfully it is just once a year.....I am finding after being quite a loner for many years, that is is nice to feel a part of something larger, a feeling of belonging...that somehow gives more of a sense of purpose ...thank you for your thoughts and your prayers
Nice summary.
We attended this event a few years back, as well as lots of local NYC events. We also worked hard for passage of the Pancreatic Cancer Research and Education Act (which was eventually passed in a slightly different version called the Recalcitrant Cancers Act). It is my belief that the improving survival rate (while still dismal) is in large measure due to this increased funding. Kudos to you for continuing to stay involved in the pancreatic cancer community even after the loss of your Emilee! 💜💪🏽
You know I was there for HER, and EVERYONE who could not be there, and I agree that the small improvement in survival is due to the increased funding. I will not abandon the cancer community, as a matter of fact you gave me an idea...I want to work on a song... you didnt see the kids song i wrote last week... if you ever get a few minutes (that's a big laugh, hahaha) on my facebook page (neal klein) scroll down to me holding a guitar... and have a listen...two minutes and 30 sec...and it will be over...lol...you are tough..you can handle it...lol.. it will put a smile on your face....
I know I miss out on alot - but I simply can't bring myself to participate on facebook. No time!
awwwww...i am disappointed... i dont think it will send in an attachment...too large a file... sigh....lol
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February 10, 2017

North Haven, Connecticut 06473

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Pancreas Cancer

Stage 4


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