Lived Experiences from patients who have are sharing forward for the benefit of those who become newly diagnosed patients

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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 vocabularies. 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.

Jessica Thomas

Within hours of my dad’s cholangiocarcinoma diagnosis, I was online doing research trying to learn about this type of cancer.  I soon found my way to the comforting and informative web site for The Cholangiocarcinoma Foundation.  Among other helpful resources like the Mutations Matter video, I found CholangioConnect.  Unsure of what to expect, I filled out the caregiver form.  Within just a few hours I received a phone call from my mentor.  The truth is simple:  The CholangioConnect program fundamentally changed how I navigated the uncertain and scary world of my dad’s diagnosis.  My initial phone call with my mentor lasted over an hour and I went from feeling scared and alone, to feeling informed, hopeful, and more equipped to face the uncertain times ahead for my dad and our family.  Just something as simple as how to pronounce “cholangiocarcinoma” helped.  As my mentor and I grew our friendship, I learned a great deal as she shared her experiences as a caregiver.  I now knew the right questions to ask about treatment options and felt more prepared by knowing what to expect.  I was no longer navigating this diagnosis in the dark and I had a safe place to also share my worries and fears, which allowed me to remain strong for my dad.  As time went on, I would keep her informed about my dad’s doctors appointments and she would always reach out before and after to let me know she was thinking about me.  I not only gained a lifelong friend, but also truly found a family with the entire CCF team.  I am forever grateful for my experience.

Rob Howard

Just shy of the fourth anniversary of CholangioConnect, there was a celebratory enthusiasm as the administrative entry registered its 500th connection through the Foundation’s mentoring platform. This data is without reservation – truly commendable, but it is the individuals behind  the numbers who make this accomplishment genuinely noteworthy.

Volunteers are the pillars of this undertaking and give so much of themselves to others. As the program evolves, the outpouring of community around the globe, reinforces our international presence and reminds us of the realization that hardships do not discriminate. These mentors share a part of themselves, offering to walk by the sides of those who seek knowledge and encouragement. Mentors of CholangioConnect understand by experience, the fear and loneliness of this diagnosis, as all volunteers have a personal relationship with bile duct cancer.  They want their every heartbeat to make a difference, and there are so many successes. Beautiful stories abound from mentees who first sought support and now wish to give back and become mentors, because of the compassion extended to them. Profound bonds are forged, and mentorships give way to lasting friendships that are sometimes only possible when both parties emotionally respond to a common adversity. They show us courage and the opportunity to witness humanity at its best.

I am humbled to be a part of the CholangioConnect program, and find it a gift to be in the  company of people who, every day, offer others a reason to smile.

Patty Maxin

Greetings from Istanbul, Turkey.

I am 45 years old and work as an attorney of law, the profession that I inherited from my beloved father who passed away from cholangiocarcinoma on Jan. 8, 2018.

My dad had a Klatskin Tumor, and he was diagnosed in August 2017, within a week after being hospitalized due to unexplained fever. He was taken into Whipple surgery but it was understood he had multiple micro-metastases in the liver so nothing could be done.

This was a very rare cancer and little was known so I started looking up on the internet to find out if there was anything I could do to both lengthen his life and help myself bear the situation. That’s when I found the Cholangiocarcinoma Foundation (CCF).

I filled out the form and I was responded to immediately by dearest Tom Leitzke. I thought I was pretty lucky because he was a wonderful person. He was very understanding, always by my side, giving advice and positive vibrations, not only for a year until I lost my father, but also afterward while I have been grieving. He even made a connection between me and Svetlana Zheleva from Sofia – Bulgaria. She was also taking care of her mother who suffered from the same cancer.

I keep in touch, as much as possible both with Tom and Svetlana. In this journey, Tom has been an elder brother to me. I really do not know how I would survive being an only child through a year of illness and six months of hospitalization.

I am grateful to CCF for this opportunity and forever in the debt to Tom for being my mentor.

Asli Bese Ozdemir

Why

My wife Sarah was diagnosed with intrahepatic cholangiocarcinoma in January 2015 and passed away nine months later. Reflecting on our experience, I can almost still feel the anxiety, the fear, the sadness, and the confusion – probably the same feelings that all patients and caregivers feel at some point.

There were so few knowledgeable people to consult that it left us feeling both isolated and powerless. Sarah would typically have just enough energy and emotional bandwidth to make it through the day leaving me with the responsibility of scheduling appointments, researching treatment protocols and investigating clinical trials. I was going to do anything to get Sarah better but I too, was left anxious, exhausted, overwhelmed and confused.

Sarah and I needed someone to inspire hope; someone to guide us. Sarah was a newly diagnosed patient and we needed mentorship – failure was not an option. We needed emotional support. We needed someone who knew cholangiocarcinoma. We needed help from someone who had already walked in our shoes – someone to lift the fog that blinded us and allow us to fight with vision, clarity, and hope. We needed someone that allowed us to fall when needed, and who was waiting for us when we got up again.

These are the reasons I started CholangioConnect.

How

I was aware of other mentoring networks like Imerman Angels – I even signed up to use  Imerman Angels. Cholangio is dwarfed in size by the populations of other cancer communities and I felt like we were getting lost in their system.

There had to be a better way. Cholangiocarcinoma patients needed mentors who, they themselves, are cholangio survivors, current patients, caregivers or family members with first hand experience with this unique type of cancer.

The more I reflected on our experience, the more I learned how complicated cholangiocarcinoma is. I was convinced that if we are to affect change we needed to harness the collective knowledge and experiences of our entire community and ease the burden on the same handful of cholangiocarcinoma survivors – the ones typically found by Google searches and sought out by newly diagnosed patients.

What

With the full support of the Cholangiocarcinoma Foundation, I created CholangioConnect to be a laser-focused mentoring program comprised solely of patients, caregivers, and mentors with first-hand experience in cholangiocarcinoma. The idea was to grow the volunteer mentor population so CholangioConnect would have the ability to connect patients and caregivers with mentors of their same age, gender, geographic location, treatment history, genetic profile, and type of cholangiocarcinoma. Patients and caregivers would also have the option of choosing a

mentor based on their socio-economic, educational, marital, or family status. The choice would be left up to the person seeking support.

The mission of supporting the community would not stop if a patient were to lose their battle with the disease. Sadly, CholangioConnect would have a cadre of volunteers who have lost a  loved one to cholangio, but at least these are people willing to offer support to others who have recently experienced a devastating loss due to this cancer. Who better to guide someone down such a path than someone who has traveled it themselves?

I created CholangioConnect because I believe that, though Sarah may have lost her battle, the  war goes on. The fight must continue. Each one of us has the power and ability to turn the knowledge we gained through our sorrow into hope for someone beginning their fight.

You do not have to be a doctor, a researcher, or a scientist to have a profound impact on this community so desperately in need. All you need is a heart, hope, and the drive to make a  difference.

Surviving spouse of Sarah Lynn Macias (passed away 10/12/2015)
Hank Macias (born 11/26/2012)

Andy Macias