How Friendship Helped Two Cholangiocarcinoma Caregivers Find Hope

When Cindy Mrotek and Katie Glenn became caregivers for their parents with cholangiocarcinoma, but they didn’t just find support, they found someone who understood every fear, hope and uncertainty. Their friendship began long before loss and helped them navigate the hardest moments without feeling alone.

In the conversation, Cindy and Katie reflect on how sharing the same experience made each step more bearable, from early grief to rebuilding life after. Their story shows how powerful it can be to find someone walking the same road, and how a single connection can become the light in the darkest moments.

Transcript

Cindy, you and Katie connected through a shared loss. How did that relationship help you heal and feel less alone, especially after the passing?

Cindy: Well, first I would say Katie and my journey began before the loss, and we experienced loss at different times as well. As much as we were hopeful and had great hope when our parents were diagnosed, even though statistics would tell us not to, we were very hopeful, which is why we both sought second opinions and found each other, and found the foundation.

We still had great hope, but at the same time, at least in my experience, Katie and I were also experiencing the same fears, kind of grieving even before the death happened together, like, “What’s going to happen if they pass away?” We were a support system for each other even before the outcome we didn’t want, which was huge. Because when, unfortunately, we had to bury our parents and honor their memory, the pain didn’t go away, but it made it a little bit less because it is rare to find somebody who has walked exactly in your shoes.

Katie walked my journey with me and experienced all the same pain of losing a parent just a few months before I did. It is rare to find somebody who, I can honestly say, walked in my shoes. You don’t usually find that occurring at the same time. Now, when we talk to patients, I can say to them, “Yeah, I’ve walked in your shoes,” but that was eight years ago. Katie was my partner in hope. She was my partner in grief. Now she’s my life partner, I feel like. She has just become my person because of the journey we’ve walked together (from hope to treatment to grief) and now we’ve celebrated life. Katie had a baby after her dad passed away, so we’ve just experienced all facets of life together during an earthquake, basically.

Katie: Cindy and I have traveled through so many different parts of this diagnosis together, and I always say that if I didn’t have our friendship and the friendships we have formed with others through the Cholangiocarcinoma Foundation, this would be such a lonely journey. Having a rare, aggressive diagnosis like cholangiocarcinoma enter your life is the loneliest feeling we have ever felt.

Finding the Cholangiocarcinoma Foundation makes you feel like you are going through it with others. We did walk that path together. We were able to be a support to one another. We were able to find hope together. We were able to go through the darkest of days together, and somebody else understood.

We did walk in each other’s shoes and have somebody else understand, even when our own family members couldn’t understand what we were going through. Being the primary caregiver at that time, I describe Cindy as my light in the dark. It’s very dark getting that diagnosis. There is no light. There is no positive in life at that time, and it’s hard to hold on to any glimmer of hope. But when you find a friend like I have found in Cindy and … so many other people at the Cholangiocarcinoma Foundation, they bring the light, and you realize that you can get through it.

I often say I don’t know if I would have made it through without them. I try to think of that: what would life look like if we did navigate this by ourselves? If we didn’t have Stacie Lindsey and the Cholangiocarcinoma Foundation that her family started, what would this look like for us? It would not be a good place.

Cindy: Yeah, or others who are just experiencing it (and just contrasting between the two) my dad has a rare blood cancer right now, which actually Incyte talks about on their Facebook group. But it’s completely different, because cholangiocarcinoma is an ugly cancer. It destroys the person that you once knew. They become a shell of themselves because of how hard treatments can be on the body, the weight loss, how sick they get from this disease.

Navigating two different cancers that are both extremely rare, I can say I feel like with my dad’s cancer right now, I don’t need a Katie because I have it under control a bit, and he’s still himself, and there aren’t as many complications because there are more treatment options. But when you’re literally fighting for hope, which is what you’re doing for cholangiocarcinoma, you need that light (that little bit of hope) which is what Katie, like she so eloquently said, brought to me as well. It is our duty, our privilege, our honor, to give some of that hope to others because it is a scary diagnosis.

Transcript has been edited for clarity and conciseness.

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