Advocating.

Our beloved BM (Blog Master) is under the weather so we’ve taken it upon ourselves to write the  blog…..does everyone hear the crickets? We don’t even know where to start……we’re just not Julie! But we’ll try……

Patty:

I’ll start. This is Patty V:

Our day started at 7am with a rally breakfast IMG_0320and us wondering who has that much energy at 7am?  I can tell you that a gal named Julie Fleshman, Director/C.E.O. of the Pancreatic Cancer Action Network (PanCan) and her posse has enough energy to light up DC at midnight! The passion, the excitement and all of us in our purple ready to storm the castle (the House of Representatives and the Senate) and get this funding for research.  I, personally, am exhausted, and I think the permanent color of my eyes is bloodshot red.  The gals insisted on pushing me around in a wheelchair. I think they liked the attention and getting cute interns to help us with doors and directions around the secret corridors of the Capitol.  The bathrooms in the Capitol are very average. Nothing special, in case you were wondering.  Our first meeting was with the office of Senator Bill Nelson. Ya know, Bill was a payload specialist on a space shuttle! My reflection on the day is this……very moving, and a lot of desperation to get this cancer to the front for funding. To see all 600 of these people from all over the United States come together for Pancreatic Cancer, brought tears to my eyes. 

(pictured above is the Florida Delegation that went to U.S. Senator Bill Nelson (D-FL) and U.S. Senator Marco Rubio’s (R-FL) Offices.   At Sen. Bill Nelson’s Office we met with his Health Aide, Leila Goharioon.)

I just wanna be healthy again……that’s not just my Christmas wish, that’s my daily wish…..prayer …. and now, here’s Trudi…….

Trudi:

“Hello my name is Trudi Diamant, and I’m from Bradenton, FL.”… That’s how we introduced ourselves all day long today, name and city with each greeting.  PanCan Action Network gave very clear instructions of how to say hello. 

Our second stop today was Senator Marco Rubio’s office.  PanCan was also very clear that we stay on topic, and we did.  Our mission was to bring awareness to this devastating disease and to ask for increased funding for research.  We met with Senator Rubio’s Legislative Assistant, Eduardo Sacasa, who is knowledgeable, attentive, and promised to share our concerns.   The cure may be just around the corner, and we need funding to find it!  

Janey:

Hey everyone, this is Janey.  My favorite part of the day was probably cosmo time at the hotel bar and margaritas and dinner at Rosa’s Mexicano, but I’m skipping ahead. 

Upon leaving Senator Rubio’s office, we had some enthusiastic interns escort us to the tunnel train system to go from the Senate side of the Capitol to the House side. Have you seen these little trolley-like things? So cute!  We found our way to Congressman Vern Buchanan’s office after mistakenly taking wrong elevators. Do you know you have to take an elevator from the second floor down to the sub basement, then get on another elevator 100 yards away to go up to the third floor? Well, you do. Anyway, we met with Congressman Buchanan’s HLA (Health Legislative Assistant), Jordan Heyman. We’re cool now so we know the acronyms. You’ll catch on. This meeting was the first one where we were ON OUR OWN. We did not have the other 35 Florida delegates with us this time. The whole speech was up to the six of us.   After introducing ourselves to Jordan, we quickly learned that she was born and raised in Highland Park, IL! Guess what? That’s where Patty was born and where we spent our early childhood. God wink. We began to feel more at ease, and Patty had the opportunity to share her story in more detail. She talked about her 70+ rounds of chemo, her surgery, radiation, recurrences, metastases, and mostly her wish to LIVE. She talked about her daughters, her son, her soon-to-be-born first grandchild, and her parents and friends (upcoming opportunities for voting much needed funds toward PanCan Research). The rest of us did our best to explain the four “asks” we were instructed to present. I’d like to believe we did a good job, because we’re there to make changes for everyone with Pancreatic Cancer, starting with my bestie— my sister. 

Patti T:

Hello to all our friends in the other side of this blog:-) Patti T here.  Today was filled with favorites for me. First, we are in Washington, DC; our nation’s beautiful capital. Second, I’m here with my Sixtah’s, the best friends with whom you could ever be blessed.  Third, my baby sister lives here, and we saw her at dinner every night!  There are more fav’s, like while we were walking through the stately corridors of our senate and congress, people smiled and asked you if you needed help, were interested in our (PV’s) story, and volunteered directions when they saw us looking confused (at every turn).  People were kind!  So what’s our take from today? We have pledged to continue to learn about and advocate for federal funding for pancreatic cancer research until the cows come home, or there is a cure…whichever comes first!  We have discovered a new purpose for our Patty’s story.  She continues to inspire.

Jean:

So now it’s my turn- Jean here – they saved me for the finale…saved the best for last perhaps you’re thinking? Haha- nope…they simply weren’t sharing!  Since everyone has pretty much filled you in on the events of the day – I will share the weather,  It was really hot & rained hard,  and our cuisine, we did a lot of snacking!  Another thing I can share with you are the emotions of the day, because there were plenty!  It’s been difficult to sit through some of these meetings and gatherings hearing people’s stories of pain and sadness. For me, the designated crier of the group, I did my job easily.  What I found most difficult though was watching Patty’s expressions as we listened to some less than positive, but real life stories.  She’s not someone whom I’ve seen cry much.  In fact, she is probably the strongest woman I’ve ever known.  Thankfully we also heard from some very smart people who are dedicated to making a difference in this disease process, and the message of hope was something that prevailed throughout our days here. I think we are heading home with a feeling of accomplishment at having done something with real purpose.  We may not have won this battle yet, but it certainly gives us a sense of hope that we’re fighting the good fight.  Meanwhile our warrior, Patty will continue her amazing fight as we return home tomorrow and she begins a new chemo treatment the next day.

Julie: (next morning):

Well, a stomach bug had me like @#$%&.  What can I say?  I took a downward turn as we got to the restaurant for dinner, and I didn’t last long. I asked Janey to bring me back a soup which never got touched (ahem), and I dove into my hotel bed and didn’t get out for thirteen hours.  The gals apparently knew I wouldn’t be able to blog, and they wanted you all to hear about our day and the sweeties passed around Patty’s phone at the restaurant and each wrote a portion of the blog (that you see above).  So sweet.  And far better than anything I could have written…AND they sent me updates about how they were missing me from the restaurant:

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They’re the BEST.  The BEST.

You may wonder what YOU can do?  You can go to the Pancreatic Cancer Action Network website an ask for updates and to be on their email distribution.  You can call your representative and senator’s offices and ask for increased funding for Pancreatic Cancer Research.  It’s not hard, and it is effective.  It’s an election year.

We head home today.

____________________________

Here are a few of us with one of the Founders of the Pancreatic Cancer Action Network, Pamela Acosta Marquardt and we also got to talk with Julie Fleshman, the director of PanCan although we didn’t get a picture…

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3 Comments Add yours

  1. Kathi Diamant says:

    You ladies are amazing, and the best friends anybody ever had anywhere, anytime.

    Like

    1. Hope all is well w you, kathy! You would have loved this!

      Like

  2. Mama Betty says:

    You gals were on a mission and I think you left your mark, for Patty and all the others fighting this horrible disease! We need funding NOW to get the CURE. Love you all so much for doing this for Patty and the others, you’ve interrupted your lives for this trip and it’s soooooo appreciated.
    xoxoxoxoxoxo💜
    PS. BM (Julie) can be very proud of you for filling in, it was nice to hear your different takes on the trip💕

    Like

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