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.
We NEED MORE FUNDING…….FOR EARLY DETECTION AND BETTER TX
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.
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June 22, 2017 at 3:50AM PDT by Private User
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.
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
