Last Canadian Thanksgiving, I enjoyed dinner with my family. It was a small gathering of my husband, mom, brother, and two adopted dogs. It was everyone I loved dearly. My dad wasn’t there as he passed away in May 2020. He was diagnosed with cholangiocarcinoma a few months before his death. He had no symptoms. Doctors accidentally found cancer after he fell and broke his hip.
While no one wanted to hear the word cancer, there wasn’t a big upset about his diagnosis. My dad was almost 90, in congestive heart failure, and struggled to mobilize after his fall. We felt blessed that he lived so long. He was tired and ready to go.
Last Thanksgiving, I also thought a lot about my favorite boss, my mentor. I admired his drive, dedication, grace, and kindness. He passed away in September 2021. He was young – in his mid-sixties. He lived only a few weeks after his diagnosis of cholangiocarcinoma.
You probably think that’s strange. I’m sure you know that cholangiocarcinoma is a rare disease. You probably realize the low odds of one person knowing two people with this type of cancer. You’re now going to hear how this story gets even stranger.
I had a gallbladder attack – my first one – in February 2021. Tests showed I had sludge but no stones. A week after our Thanksgiving meal last year, I found myself back in the ER because of excruciating pain. I suspected it was my gallbladder. You’re not going to believe this… Three weeks after Thanksgiving, I was diagnosed with Stage 4 gallbladder cancer – a type of biliary tract cancer like cholangiocarcinoma.
At 47 years old, a general surgeon told me my prognosis was grim. He asked if my affairs were in order. They are because I know the importance of having a will. You can imagine my devastation. I’m sure you understand how scared I was. You know I had more questions than answers. And you probably realize I didn’t know where to turn.
Through the haze of my initial diagnosis, and while trying to avoid the terrible statistics you can find on Google, I made my way to the Cholangiocarcinoma Foundation’s website. If you’re familiar with the Foundation, you probably know that the organization gives hope to us, our families, and our friends for those facing this rare disease. You may also have used some information on the website or sent it to a loved one.
Thanks to the incredible support of donors, the Foundation offers free books, including “100 Questions and Answers and Nutrition & Cholangiocarcinoma.” Regular webinars sharing clinical trials and treatment options are provided. You can also watch videos about other essential things including understanding your biomarkers.
The Foundation recently started a monthly support group for Canadian patients and caregivers. This is a place for Canadians like me to connect through our struggles and successes. We can also share information about Canada’s care, services, and trials.
As the Foundation grows, it looks for ways to further support its patients and caregivers. I’m grateful for this because there is limited information about biliary duct and gall bladder cancers available in Canada. The support helps me feel less alone.
You may also know that the Foundation is planning its 10th annual conference, which you can attend virtually or in person. This yearly event brings together patients, caregivers, clinicians, researchers, and industry representatives. I’m hopeful I will be well enough to attend in 2023. I hope to see you there, too!
The Foundation offers a fantastic mentorship program for patients, caregivers, and those who lost a loved one to the disease. This vital program is growing and requires volunteers to manage and coordinate mentorship requests. The connections I’ve made as a volunteer mentor are critical to me. I’m glad I can be there for others during their need.
I’m sure you understand that a cancer diagnosis is difficult to navigate. While there are days filled with challenges and disappointing news, my almost one-year journey is filled with many bright spots. The Cholangiocarcinoma Foundation is one of them.
To give back, I became a monthly donor to the Foundation. I’m giving the same amount I could spend on coffee in a month – $15. It is an easy way to make a difference. I’m inviting my friends and family to donate, too. This is also why I’m sharing my story with you. I’m hoping you will consider making a gift. Patients and caregivers are grateful for everything the Foundation does. It can only do this essential work because of generous people like you.
Having a rare disease like cholangiocarcinoma and gallbladder cancer is isolating. But there is the Cholangiocarcinoma Foundation, dedicated to raising money to support those with biliary tract cancers. And that’s where you come in. Your kindness guarantees access to up-to-date information on the latest treatments and clinical trials. Your donations provide grants to researchers who are working on finding a cure. This makes your donation so important. It is only with your gift that these life-changing programs are possible. You give us hope!
I know that between the ongoing impacts of COVID-19 and inflation, your financial situation may be uncertain. I wouldn’t be sending this letter if your donation wasn’t needed. I hope you, please consider making a gift. You can make a difference in the lives of people of all ages who need your help. You can make a difference in the lives of your fellow Canadians. And, so you know, when you give through CHIMP, the Foundation’s online platform, you receive a Canadian charitable tax receipt.
When first diagnosed, I didn’t know if I would live to see Thanksgiving in 2022. I am thankful every day. This Thanksgiving, I am giving extra thanks for your kindness and compassion. I am grateful for your support of all of us – patients, caregivers, medical teams, and more – who are fighting this horrific disease together.
Patient, Donor, and Volunteer