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 with the dreaded “c word”-cancer started.
July 1, 2014, I woke up around 5:00 am with terrible mid back pain. Thought it was the way I slept…maybe a knot in my back? A spasm maybe? So, I got up earlier than needed to see if moving around would help. I got ready, got my son ready and left for work. I remember complaining to my friend about my back pain and then feeling it in my abdomen/rib area but only on my right side. I ate lunch but cut it short because it got worse. I told the covering supervisor that I needed to leave and go home. I remember sitting in my car on the phone with my mom crying. I wasn’t sure what to do, go home or go to the hospital? No matter how old I am, I listen to my mom. So to the hospital I went but first I called my best friend/co-worker asking her to drive me.
I went to hospital not even 3 miles away. I was there all day. I had blood work, an ultrasound and MRI. I remember the doctor coming to me several times with a puzzled look on his face. He asked if drank alcohol? How often? When was the last time? Geez…. the last drink I had was about 2 weeks prior. He said my liver enzymes were elevated. I heard him on the phone. He came back questioning me about birth control use. I haven’t taken anything in about 3 years. He told me there was a mass on my liver but it was common in women my age due to long term birth control use. Umm…ok? I called my parents to fill them in. I didn’t think much of it and was told to follow up with the GI that the ER doctor had been in contact with.
July 2, 2014, I met with the GI. He was a nice guy, straight and to the point. He said the only way to know what it is, is to do a biopsy of the mass. He told me to enjoy the holiday weekend and we scheduled the biopsy.
July 4th weekend, my husband, son and I went away for the weekend. We had a nice time and my pain subsided.
July 7, 2014, I had the CT guided liver biopsy. TERRIBLE pain! Some of the worst! I remember laying in the bed on my right side gripping the handle white knuckles and all. The nurse, tech and radiologist were concerned and puzzled. A chest x-ray did show a small hole in my lung but it was healing. He for sure hit a nerve…in more ways than one. I remember very clearly thinking to myself (while feeling the pain), well this could be worse. I could be really sick or it could be my worst case scenario…..cancer. Eventually it got better thanks to Dilaudid and I went home but had to stay home from the work the following day.
July 9th, 2014, I went to work and got a call that I needed to meet with the GI. I left work. My husband and I met with the doctor. He told me it was malignant. (I will get more in depth about this day in another entry.) My world came crashing down.
July 11th, 2014, I had a colonoscopy and endoscopy. Everything was fine.
After that, it was a whirlwind. I came upon my amazing team of doctors (Columbia University Medical Center- New York Presbyterian). Had a consult. Had a mammogram, breast ultrasound and thyroid ultrasound. Also, EKG and blood work to be cleared for surgery.
August 4, 2014, I had my liver resection at New York Presbyterian. They removed 80% of my liver, gal bladder and bile duct. The tumor was 6.5 x 4.5 cm (I believe). I had clear margins and no lymph node involvement. I stayed in the hospital for 8 days. (This experience will also be another entry.)
I could go on and on but don’t want to put you all to sleep. I look forward to sharing my journey with you all.
Alright, I can’t leave y’all hanging here. I had a port put in on 9/12/14 and started chemo on 9/29/14. I had CT scans with and without contrast in September, December, March and June- all good! I did 6 long grueling months of chemo (Gemcitabine and Cisplatin). I will go into much more detail about all of this at a later date too.
It was the shortest summer of my life and the longest winter. If you live on the east coast you know exactly what I am talking about. In fact, Boston still may be snow covered…just kidding.