CholangioConnect was my mooring in a hurricane. Life seemed impossibly full of information and emotions, and I was so grateful for my mentor. She helped me navigate the medical world; put medical jargon in lay terms; and shared her own story in an act of solidarity and love. I could ask her questions that were difficult, profound, spiritual, and hard. She was there.
CholangioConnect absolutely sustained me and helped me navigate life. It gave me hope.
A diagnosis of cholangiocarcinoma comes with the weird dichotomy that your world both expands and shrinks at the same time. Life becomes about staging, scans, chemo, fear, hope, love, despair, clinical trials, mutations, and the acute awareness that life is so sweet, despite and maybe because of - the walk with cholangiocarcinoma.
I was 36 when my 35-year-old, triathlete husband was diagnosed with ICC. Our two kids were ages two and four. One day, he just woke up yellow, and a word I had never heard of quickly became a major part of our everyday vocabulary. I reached out for a mentor through CCF and was paired with Mike, whose 45-year-old wife was facing the same challenges. Although we briefly connected, I found a mentor, who gave me love; gave me information that nobody else could or would speak to me directly, and gave me hope.
Jeff died eight months after his diagnosis, and I knew I wanted his experiences and my experiences to help other people. I reached out to my mentor and asked to be a mentor for other caregivers. Now, I consider it one of my life’s great privileges that four people let me walk with them as they navigate therapies, feelings, parenting, and all the ups and downs that go with the word ‘cancer.’ Although I’ve never met my mentees face-to-face, I can unequivocally say that I love them, and we are bonded in a special way through the solidarity that comes with having gone through something profound.
And that man I was originally paired with? Mike? Well… we’ve been in a relationship for almost a year now. We share stories of our late spouses, and our kids talk about Mommy and Daddy in heaven. We laugh and cry about stories of driving to UChicago and share the same fond memories of walking with those doctors through the most difficult time in our lives. As Mike has said, that life was good. This one is, too.
The mentor-mentee relationship has been one of my life’s great joys. It not only has brought me hope through dark times but lifelong friends and a new partner. Indeed, this is a good life.