We are Stronger Together

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.

Now 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)