Shared Loss Leads to Lifelong Friendship in Rare Cancer Caregiving

When Cindy Mrotek and Katie Glenn each became caregivers for their parents with cholangiocarcinoma, they had no idea the experience would lead to an unbreakable bond. Through the Cholangiocarcinoma Foundation, they found support, knowledge and each other — helping them navigate grief, find purpose and give hope to others facing this rare diagnosis.

Their friendship, born from loss, has grown into a source of light for other caregivers walking the same difficult path.

CURE: Cindy, when your mother was diagnosed with cholangiocarcinoma, what helped you step into the caregiver role during such a sudden and overwhelming time?

Cindy: When my mom was first diagnosed with cholangiocarcinoma, I mean, I’d never heard of it. Nobody in my family had heard of it. We knew it was rare. The doctors told us this was rare, and they told us it wasn’t good. The prognosis was not good. Time was probably limited, so immediately you go into fight mode — at least I did — and you’re just looking for answers. Even if you know there’s not a cure, you’re looking for options for a better quality of life. You’re looking for people who have walked in your shoes, who you can learn from, who could provide hope, who could share and shed some light on something that is very dark and very devastating. So that’s really what fueled me to get involved in the Cholangiocarcinoma Foundation. That’s obviously how I became connected with Katie, and we can tell you more about our story a little bit later on. But that’s what got me going — the rarity of this disease and the significant impact it was going to have on us in a very short time span, most likely.

Katie, what were some of the key moments during your father’s cancer journey that changed the way that you viewed caregiving as a whole?

Katie: During my father’s cancer journey, there were quite a few key moments that changed the way that I viewed caregiving. First, with the diagnosis — I was pretty young at the time, and I had never had an important role in life like I did caregiving for my dad. I felt like I went in with absolutely no knowledge about not only the disease but how to be a caregiver.

A key moment that changed caregiving for me was when I found the Cholangiocarcinoma Foundation website (www.cholangiocarcinoma.org). My sister also found it, and we knew immediately that this was an organization that was going to help us navigate this very difficult diagnosis. We knew it was going to be a difficult journey. My family is no stranger to cancer, unfortunately, with both my mom and my sister also having breast cancer. But we knew this, affecting the GI tract, was going to be a much different diagnosis and path we were about to take.

Finding the foundation was definitely one of those key moments for us, and that changed the way caregiving was going to happen for me, at least, because I met so many people who were so empowering and impactful to navigating this. They had the knowledge. I was able to meet them in person by going out to the annual conference. That was another key moment that really changed the course of caregiving for us because I was able to make those in-person connections.

Whenever we are advocating or mentoring, I always recommend getting to that conference, because every stakeholder is there — from patients to caregivers to pharmaceutical companies to medical professionals and clinicians and everybody. It has a wealth of knowledge. Attending that first annual conference was the first time they invited caregivers and patients to be a part of it, so going to that conference really was another key moment that defined how I navigated the caregiving journey.

Cindy: And if you can’t make it to the conference, get online. The foundation has made it so accessible to caregivers who aren’t able to physically be there or patients who are too sick to be there. Any way you can attend, get there, because the community that surrounds you — even virtually — will change your perspective on the disease.

Katie: And I would say one more key moment that was defining for us navigating the cholangiocarcinoma diagnosis was when we had just found out that my dad had this diagnosis. We were very fortunate that we were in a major cancer institute, and so he was already seeing specialists, although we were encouraged to go and get a second opinion. That is always encouraged when dealing with a very rare cancer like cholangiocarcinoma.

Seeking out that second opinion was another defining moment that changed the way we were going to be caregiving, and it actually wound us up in another major cancer institute that was really the driving force in my dad’s cancer care. Again, we were very fortunate that we saw specialists from the beginning of the diagnosis because they did encourage biomarker testing.

Although when we are talking about my dad’s diagnosis and Cindy’s mom’s diagnosis back in 2016, there were so few options for treatment. I’ll never forget when they said, “Just kind of sign this, it’s for biomarker testing,” and we didn’t really know anything about it. The resources that we have today through the collective, the Cholangiocarcinoma Foundation, and going to TestMyCholangiocarcinoma.com — we didn’t have that. These are amazing resources for current patients today.

Cindy: And now major institutions will do biomarker testing in-house. That was not an option in 2016 — it had to be sent away, usually to FoundationOne. But everything has just come so far now. We know that biomarker testing is really the key to effective treatments and different clinical trials, if they’re available for patients. It’s great that it’s coming to major cancer institutions now.

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 Insight 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.

And it’s our duty, our privilege, our honor to give some of that light and hope to others, because it’s a devastating, scary diagnosis.

Stay tuned for part 2 of this conversation with Cindy and Katie, where they continue sharing their powerful stories of caregiving, connection and hope.

Transcript has been edited for clarity and conciseness.

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