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Posted by on May 25, 2013 in Our Stories | 0 comments

Pancreatic Cancer

Pancreatic Cancer

A snapshot of the article that appeared in the Palm Beach Post last December.

My dad and my step-mom.

Did you know? :

  • The five-year survival rate for pancreatic cancer remains in the single digits at just 6%.
  • 74% of patients die within the first year of diagnosis. The average life expectancy after diagnosis with metastatic disease is just five to seven months.
  • Pancreatic cancer is one of the few cancers for which the survival rate has not improved substantially over 40 years.
  • In a recent report published by the Pancreatic Cancer Action Network, projections indicate that by the year 2020, pancreatic cancer will move from the nation’s fourth to the second leading cause of cancer death.
  • Despite these dire statistics, the National Cancer Institute (NCI) currently allocates less than 2% of its annual research budget to pancreatic cancer.

Our Story:

My dad was diagnosed with pancreatic cancer just two months before our wedding day.  Six weeks before we got married, my dad had the Whipple surgery, which is an intense surgery lasting more than 8 hours.  Believe it or not, he was able to walk me down the aisle six weeks later.

I remember the first time I read the statistics on the internet.  The first time I learned that we probably only had a few months left with my dad.  I hadn’t been able to give him grandchildren yet.  There was so much life yet to live.  I sobbed in my bed as my husband slept next to me.  My sobs eventually woke him up in a panic.  And I couldn’t speak.  I just showed him the words on the screen that told us there was not much time left.

One year, one massive surgery (and some complications), and months of chemotherapy later, my dad was still with us.  It was the summer of 2010 and we all thanked our lucky stars he was still here.  But we still weren’t sure for how much longer.

That September, shortly after our first anniversary I got involved with the Pancreatic Cancer Action Network (PCAN).  I had looked to see what was going on in Delaware to support patients and raise awareness about this disease.  And I had learned that there was an ‘opening’ for a new affiliate (kind of like a chapter) of PCAN here in the state of Delaware.  And so, it began.  With the support of headquarters out in LA, I became the new ‘Affiliate Coordinator’ for the brand new Delaware Affiliate of the Pancreatic Cancer Action Network.  [Aside: Little did I know that I was probably already pregnant when I signed the agreement to lead the Affiliate for the next two years.  And little did I know that we would be having TWINS!]

Fast forward to today…

First, and most importantly, my dad a.k.a. “Papa” is still here with us.  He’s healthy.  Despite needing additional chemo and surgeries after the cancer spread in 2011, he’s still here.  Recent scans have shown NO SIGNS of cancer in his body.  Can you believe that?  What are the odds?   He is an outlier.  His oncologists are truly shocked.  Click to read the article about my dad in the Palm Beach Post, published last December.

Cancer has taught us some things.  We don’t talk about this a lot as a family, but cancer has brought us closer.  It’s funny how having a terminal illness can catch you off guard in the middle of fussing over nonsense, isn’t it?  My dad is a different person now.  And I think we all are.  We finally realized there’s no time for getting angry over stupid stuff.  There’s only time to love.  And wow, how things change when you focus on love instead of on nonsense.

I’ve recently realized that I can’t do it all.  Last fall, I finally stepped down as the coordinator of the local affiliate.  There are truly wonderful people leading the efforts now and taking it way further than I could have at this point in my life.  Parenthood hasn’t been easy.  Life is busy.  Work is busy.  But yet, I felt an incredible guilt letting it go and saying that I didn’t have time for supporting the cause.  And don’t be mislead… my dad was so proud of me for doing this and being involved.  But at the end even he said to me, “You don’t have to do this anymore.  I’m so proud of you, but it’s too much.  You can step down.  It’s OK.”  I’ve had to do a lot of soul-searching over the past two years since becoming a mother.  One of the hardest things for me has been learning how to say no.  I’ve learned that sometimes life needs some empty crevices.  And the crevices are there to be filled with reading books with your children, or spending time with your spouse, or planting a garden with your family, or skyping with Mimi and Papa.  [Another aside: And by the way, did you know how hard it is to really keep your marriage strong while all these things are going on?  And did you know that it actually takes time Do you know how hard it is to tend to the very foundation of everything surrounding you?  Before I had kids, I honestly had no idea.  There are times I wish I could go back to my pre-kids self and relax with my husband. But, let's face it--  I really wouldn't know what to do with myself.  It would feel completely foreign and I'd miss the love and the beautiful chaos  around me.  I'd  probably even miss the Legos on my floor.]

Can you support the cause?
So, back to this very moment.  I may not be able to lead volunteer efforts for the affiliate, but what I CAN do is ask for your support.  Next weekend, on June 1st we are holding the very first Purple Stride Delaware!  It is Delaware’s first 5K event to support the Pancreatic Cancer Action Network.  Funds raised go toward providing hope and information to patients and providing research dollars for a cure.  I’m helping out a tiny bit by coordinating the “Kids Zone” with other volunteers (thanks Nancy, Lisa, Sarah, My Lovely Sis, and others!).

Can you help us out by donating to the team?  Or, if you are local, would you like to join us?  I originally set a goal of $1,000 and haven’t even come close.  That’s the funny thing about fundraising — if you want people to give, you actually have to tell them about your cause and ask for support!  :)  So, can you support “Bob’s Duct Tape Parade in Delaware” (that’s our team name which mirrors our team name for the walk we do in NY each year!)?  We’ll be there, with the twins in tow, coordinating the Kid Zone, and possibly walking (or throwing a toddler tantrum on) approximately 1/8th of the course on the Riverfront.

Click here to visit our team’s page.  Then click the top right button that says “donate” to contribute. We do this in support of my father and also in support of all the other families who have been terribly impacted by this disease. Thank you!

On the Pancreatic Cancer Horizon:

I’m happy to report that progress is being made.
On January 2, 2013, President Obama signed the national defense bill into law, which included landmark legislation that will help advance pancreatic cancer research. The Recalcitrant Cancer Research Act will create a scientific framework for accelerating progress and improving patient outcomes. Passage of this bill was due in large part to the hundreds of supporters across the country whose extraordinary efforts to create awareness and advocate in their communities created the momentum needed for Congress to act.

Top Five Causes of Cancer Death, PDF — let’s work to see these statistics improve!

Hard to see, but the smallest bar represents Pancreatic Cancer at a five-year survival rate of 6%.

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