About the Author

I am a 31-year old mother of a two-year-old son from Roxbury Township, NJ.  My name is Sarah Bennett and I  was diagnosed with cholangiocarcinoma on July 9, 2014 after a visit to the emergency room with severe back and right abdominal pain. For the longest time I thought I was the only one with type of cancer. I think it’s important to be able to connect to others so I am sharing my story through the CCF blog.  I hope that you will also join the conversation.

Chemo 101

It has been awhile since I last wrote. My apologies. I have good intentions but then I get home from work and sometimes the thought of starring at the screen doesn’t sound so fun. However, I feel this is an important topic, chemo. I asked my trusty group of cholangio friends the following questions: What’s some advice you give someone just starting chemo and/or radiation? Or any other procedure associated with this cancer. What are your thoughts or feelings on chemo ending? Whether it was because your doctor didn’t feel the need for it anymore because NED. Or you needed to stop and give your body a break. Or you personally decided to stop chemo and why? I ask because there are so many... read more

Get connected

Cancer is a scary word. Cholangiocarcinoma is an even scarier word. What makes it better is finding other people affected by Cholangiocarcinoma. It’s no easy feat, I know. It’s a small community with only 2-3,00 people diagnosed each year in the United States. The more people you connect with the better you feel. At least for me that’s how it is. You can start through The Cholangiocarcinoma Foundation message boards. Last October, about two months after my resection I heard about Immerman Angels. Through them I was connected to my mentor, who has turned out to be a very dear and close friend.  Fast forward two months later to December when I participated in The Cholangiocarcinoma Foundation Giving Tuesday contest. I entered my photo in the... read more

Don’t listen to the statistics.

Awhile ago I asked a group of people and not just ordinary people but cholangiocarcinoma fighters, what’s one piece of advice you’d give about anything related to Cholangiocarcinoma? Below are their exact responses but first my piece of advice is; DON’T LISTEN TO THE STATISTICS! “Perfect advice….6 months…to what…Perfect my karaoke voice and hip shake” “Go to doctors who specialize in this rare cancer. Don’t hesitate to get second opinions on everything.” “In this case sometimes everyone is not created equal, sometimes it depends on your body how reacts to treatments . Or what kind of cancer tumor you have. But remember we are all here for each other.” “Don’t wait for tomorrow, do it today.” “Listen to yourself and how you feel. Fight for... read more

A Story of Hope

I was asked by the Foundation to share this story. I was more than happy to. It’s an incredible story and full of inspiration. I have talked to many people who have been told they are/were unable to have a resection. I know some of the those people endured months of chemo and radiation and were eventually able to have a resection. I hope Matt’s story gives others hope as well. “Life is an obstacle course for this very brave couple. Meet Matt (36) and Lauren O’Quinn from McDonough, GA. Matt’s journey began in November 2010.  Prior to this time, Matt O’Quinn was a healthy 30 year-old with no medical issues.  One day, Matt’s wife Lauren noticed the whites of his eyes formed a yellow... read more

1 year later and treatment woes.

On August 4, 2015, I celebrated my one year anniversary of being “cancer free” or NED (no evidence of disease) as my doctor says. It was an important day for me. More than anyone could truly understand. I decided on that day because it was when I had my surgery and since I had clear margins and no lymph node involvement that’s what I went with. Not when I finished chemo, which was five months ago. When I look back to the past year, I can’t help but think about ALL of the ups and downs. Each holiday I obsessively took pictures for fear that it might be my last one. I wanted each and every holiday and birthday to be celebrated and the... read more

Did that just happen?

I have re-written the first sentence of post three times now. Why is it so hard to get what’s in my head down to my fingers and to the keyboard? *sigh* The week of August 4, 2014 to August 11, 2014, is a week I often relive. Have you ever woken up in the middle of the night or in the morning, groggy and out of it wondering if what you just experienced was real or not? Have you ever woken up and had a hard time adjusting your eyes and everything was blurry? Now imagine yourself waking up, in a dimly lit room and not knowing where you were. Imagine your eyes being so swollen that you could barely see. Imagine seeing blurs of people... read more

I want off this roller coaster.

Here I am staring at a blank screen wondering what to type or where to start. Let’s start simple. My name is Sarah and I’m 31 years old. I am a daughter, mother, wife, sister, aunt, cousin, granddaughter, niece, daughter-in-law, sister-in-law, co-worker, and friend. Oh wait! You can add Cholangiocarcinoma warrior and/or survivor. My goal is to give people insight into what it’s like having Cholangiocarcinoma. The good, the bad and the ugly. To help and inspire but mostly to make you feel not so alone. I came up with the blog title as “Cholangio…what?” for a couple of reasons. 1. Cholangiocarcinoma is hard to pronounce and 2. Most people, at least those that I’ve talked to have no idea what it is. Here is how my roller coaster... read more
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