Calling all Cholangiocarcinoma/bile duct cancer Patients

Posted by Andrea Parrella @afrancesca, Dec 19, 2019

My name is Andrea Parrella. I am a patient at the Mayo Clinc in Arizona as well as a volunteer patient advocate for the Cholangiocarcinoma Foundation.

Growing up in a big Italian family outside of Boston, I remember my dad's mantra to us kids was (and still is!) "no man is an island." Many years later, I learned that he had taken these words from John Donne and that rest of the quote reads, "every man is a piece of the continent, a part of the main." Nowhere has this become more true for me than in our Cholangiocarcinoma Continent! None among us is truly self-sufficient. We must all rely on the company and comfort of each other, in order to thrive. So many people live with us on this continent! — family, friends, you-my fellow warriors, oncologists, researchers, pharmaceutical companies, Cholangiocarcinoma Foundation staff and fellow volunteers. When I was diagnosed at age 45, I was told that the best I could hope for was another 3 months to a year "tops" to live. This week, 3 years and 8 months (in counting) from that life-changing day, I will be celebrating my 49th birthday. My birthday wish is that between now and December 22nd, 49 other Cholangiocarcinoma patients/survivors take 5 minutes out of your day to join me in signing up to have your health records sent to Citizen Health Data, checking the box to give them permission to share your records with the Cholangiocarcinoma Patient Registry—this small but profound act will lead us one step closer to a cure. Once you've signed up, please reply to this post telling me you've participated in helping me to make my birthday wish come true! Love to and peace to all of you. Click on the following link for more information about this wonderful opportunity for us to not only have all our health records in one place and in our control but also in the process to help further research into treatments and a search for a cure. Here's the link: https://cholangiocarcinoma.org/giving-thanks-by-giving-back

I forgot to include this photo of me and my "No man is an island" dad in my last post. This photo was taken over the summer on the Boston Harbor.

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Great picture

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Hi Andrea, I am 55 and a patient at the Mayo Clinic Rochester. I also grew up in a large family with 9 siblings. I agree with what you said about all of us supporting one another on this earth. I had to look up this type of cancer to better understand. My cancer was in my pancreas, however, it blocked the bile duct. Which is why we caught it so early late one or early stage two. My symptoms mirrored those listed for bile duct cancer. Yellowing of your skin and the whites of your eyes (jaundice), intensely itchy skin, white-colored stools, fatigue. I can't join you in this effort but wanted to thank you for your positive story and attitude. I am grateful for every additional day God has given me through the miraculous healing and great care I received through the Mayo. I am cancer free now with my 4th follow up appointment coming up in January. I love your photo of your dad and you. I have attached one of my husband and me this summer at the headwaters of the Mississippi. God's speed to you! Rita

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