When I thought of the word rare I envisioned something precious, beautiful, and exceptional, like an amazing piece of art in a museum; something that brought joy and smiles to people. I didn’t think of diseases until I was diagnosed with Stage IV Cholangiocarcinoma in 2010. When I researched bile duct cancer, I learned that less than 20, 000 people are diagnosed a year. I learned that the 5-year survival rate is 8%. I read that rare diseases were classified as orphan diseases, so I was now considered a rare orphan? My heart sank thinking about the sadness of being an orphan. My sadness grew as I was told I had six months to live. Thank goodness for second opinions, research, and not giving up hope. I had genomic testing in 2010, but at the time there were no clinical trials for bile duct cancers.
Fast forward to 2020 and I am celebrating 10 years since my diagnosis thanks to organizations like NORD, The Cholangiocarcinoma Foundation, Target Cancer, and The Bili Project. The pathway has had many bumps in the road including 5 recurrences with 8 tumors, but the joyful moments have outweighed the bumps! Being a rare disease survivor has been a catalyst for positive change in my life, pushing me to be a voice for our community and to advocate for others. I want to shout from the mountain tops that rare is beautiful! Orphans are beautiful! You are not alone!
I have had no evidence of disease for years now, but not a day goes by that I don’t wake up knowing that it can come back any time. I recently had one of those bumps in the road. My MRI showed a spot on my spine which the radiologist noted potential malignant metastatic disease. The weeks to follow were filled with tests, tears, anxiety, and more tests. The final diagnosis was a compression fracture resulting from radiation treatment in 2014. Wow, cancer treatments... the gifts that keep on giving! Driving home I thanked God for compression fractures, neuropathy, and body aches because I can live with these.
I am grateful for the gift of life and I share my Hope with others through raising research funds for Cholangiocarcinoma through our 501(c) 3 charity we started in 2012, Craine’s Cholangiocarcinoma Crew. I mentor patients and provide them support through love, prayers, and knowledge. I volunteer for the Cholangiocarcinoma Foundation as a research Advocate and love sharing what I learn with others. If I could only share one piece of critical information with a new patient, it would be to have biomarker testing. I have watched over the last ten years the progress in rare disease treatments and this can be life-saving.
Yes, I am rare and unique but I am not an orphan! I am surrounded each day by our rare disease community and I am proud to be a part of it. My heart is joyful each day for the opportunity to spread hope, love, and kindness with others.