Hello Cholangiocarcinoma Family! I write to bid you welcome to the blog and to provide a brief introduction. After some time under the watchful eye of multiple volunteers and leaders from the Foundation, the blog is returning to a single owner model. This isn’t to say you won’t hear from a variety of voices, but the hope is to bring you consistent content every other week in a familiar format. For this my inaugural post, I wanted to share some thoughts on how you will see things organized in the future and give a little personal history.
The evening of November 24th, 2015, after only a little over 24 hours of knowing ‘something’ was wrong, I was diagnosed with intrahepatic cholangiocarcinoma. I was 28 years old and had been asymptomatic until pain in my side three days before my diagnosis brought us to the ER and a CT scan that described a 9 cm mass in the right lobe of my liver. To say my life was upended would be a dramatic understatement, and that night I lay next to my husband of just over a year in my hospital bed googling cho-lan-gi-o-car-ci-no-ma. Our first stop on the internet merry-go-round of chronic illness research was Wikipedia, a rookie mistake.
Thankfully we didn’t have to click on many more links before we found cholangiocarcinoma.org. I went from feeling the indescribable swell of loneliness illness often brings to finding a home in a family that I would be entirely lost without. Less than a week after my diagnosis I had talked to two of the Foundation's patient superstars, Melinda Bachini and Sarah Bennett, over the phone, and I made my way to the discussion boards where I was comforted by both knowledge and touching anecdotes that gave me hope. My personal journey went down the path of portal vein embolization, neo-adjuvant chemo, liver resection, and adjuvant chemo, and I was declared ‘cancer free’ at my first scans after surgery.
If you’re here reading this, you probably know why I have ‘cancer free’ in quotes. I am educated on my illness and know that the chance that my cancer will come back is far better than the likelihood of a cancer free existence. Still, like so many other patients and caregivers, my family and I have hope, and either way, the disease that came in like a wrecking ball has left us transformed.
For those keeping score at home, I am officially 19 months with no evidence of disease. Why then, over a year and a half since my surgery, am I here to blog? Because this is my home, and the Cholangiocarcinoma Foundation continues to be a resource for me and my family long after the immediate threat of illness has faded (but certainly not been extinguished). I am a member of a tribe of warriors who fight for ourselves and others, and I am grateful to join the effort of sharing stories of hope, joy, humor, and progress.
This is the one and only post that will be Cait-focused, from here on out it’s a platform for learning and celebrating, and the information you will see shared every other week on Tuesdays will range from practical to entertaining. I’ll attempt to keep you up to date on the science side of our disease, the happenings of the Foundation, and activity in our community. No doubt there will never be a lack of topics to cover, but if you would like for the blog to host information on a specific subject, please don’t hesitate to reach out with the ask.
So that’s a little about me, the girl who lived (where are my Harry Potter fans at?) and the blog I hope to do justice to (not a good start, ending sentences with prepositions - I promise to do better in future posts). I look forward to hearing from you all with feedback, and be sure to tune in next time for a tour our revamped message boards…