CHOLANGIOCARCINOMA SURVIVOR STORY: A Mother-Daughter Journey of Hope, Faith, and Triumph

CHOLANGIOCARCINOMA SURVIVOR STORY
A Mother-Daughter Journey of Hope, Faith, and Triumph

A Note to Our Cholangiocarcinoma Community:

We want to begin by acknowledging that not everyone’s journey with cholangiocarcinoma will look like ours, and not everyone will have the same outcome. We see you. We honor you. Whether you’re still in treatment, supporting a loved one, or grieving someone you’ve lost to this disease—your story matters, your fight matters, and you are not alone. For those facing this diagnosis, we share our story not to promise a specific outcome, but to offer what we hope will be a source of encouragement: that hope is real, that fighting is worth it, and that even in the darkest moments, you are stronger than you know. To the families who didn’t get the outcome we did—we carry you in our hearts. This cancer is cruel and unfair, but every day of fighting matters. Every moment of love matters. Every act of courage matters. With deep respect and solidarity,
Alexandra & Chrissy

SECTION 1: RIGHT NOW – POST-TRANSPLANT

FOR MOM:
How are you feeling today, post-transplant?
I feel good overall. I’m dealing with some constipation and managing my anxiety—which I’m learning is a normal part of this journey—but I’m healing well and my labs look great. Part of my success comes from believing that my attitude can make or break this experience. I truly feel it’s my mission to approach each day with positivity. First and foremost, my faith has carried me through. My prayer cards have never left my side. Even when you’re put in a position like this, your will to live is powerful. There are nights when I think to myself, “How am I going to do this?” But you discover you’re stronger than you think. It takes a village to get through something like this, and I’m grateful for mine. My energy is coming back gradually. The doctors were spot-on with their predictions about what would happen in the first, second, and third months post-transplant. I am very hopeful about the future.

What’s different about your daily life now compared to before?
It all happened so fast. I went from chemo, radiation, and procedures to “you’re ready for transplant” before I could catch my breath. I’m not nauseous anymore—I can actually eat! I’m doing things that I haven’t been able to do in a year. I feel hopeful, like I’ve been given a second chance at life. I’m doing things I couldn’t do for an entire year, and it’s made me pay attention to things and people in a way I never did before. I don’t take anything for granted now. I look at everything with a new perspective. I don’t want to miss a thing. I’m looking forward to the holidays in a way I didn’t think possible. I didn’t think I could take my grandkids to the pumpkin patch ever again, but just last week I was able to do exactly that. I had two large biliary drains coming out of my body for almost a year, and they were recently removed. They took so much out of me because I always had to protect myself. I was terrified I would drop them or they would come out. They interfered with my sleep, my social life, my intimacy—they interfered with me feeling like a woman. They were always there, a constant reminder. They stopped me from giving my grandkids a proper hug because I was afraid of them getting pulled. My grandson was the one who would always tell everyone, “You can give Grandma a hug, but watch her bags.” The drains would hurt if I didn’t hold them or position them right. They were heavy. I would say this was the hardest part for me. But you learn to manage. I would tell myself, “They’rethere for a reason.” You always find a way to cope. I found a cute bag to put them in and would introduce them as Gucci and Prada. When I had three bags, I called it Louis V. To deal with something so traumatic, you have to find some kind of joy and fun wherever you can.

What can you do now that you couldn’t do during treatment?
I can go buy pumpkins and actually pick the right one! I went and picked the perfect mums because I missed decorating so much. Decorating is my passion, and I went through the holidays last year not being able to do it. I am so looking forward to making holiday meals and hosting my family. I can’t wait to look cute again in an outfit. A few days after the surgeon removed my last bags, I went to Hobby Lobby. I lost myself in that store and literally said out loud, “I am liberated! Wow, this feels so amazing. I feel free.” It was such a powerful moment. Last year was rough. My mom died last Christmas Eve while I was going through treatment, and I wasn’t able to celebrate her properly. Everything happened so quickly. This year I am going to celebrate her life the way she deserves. I’m taking it all in and loving it. You have a new perspective on absolutely everything. Even the leaves changing colors takes on new meaning.

What does reaching this milestone mean to you?
VICTORY! It’s like proof that I can overcome anything. I’m incredibly strong, even when I didn’t always feel that way. No matter what challenges came my way—and sometimes I would meet them with anxiety and resistance to another treatment—I would psych myself up and push through. My faith was the most important part of this process. I know not everyone’s outcome is the same as mine, and honestly, with how aggressive this cancer is, I had no idea if I would make it to transplant or not. But the one thing that kept me going, despite the unknown outcome, was my faith and understanding that there’s a bigger purpose. From the beginning, I was asked to be part of a study for research. I wanted to help someone. I thought, “Maybe this is my purpose,” regardless of the outcome. When I signed the release forms for the study, I hoped to God that it would help someone. Everyone has a purpose in life. I don’t believe I got this because I’m not a good person—I am good. I’m not perfect, but I am good. I don’t want to believe that this happened to me because I did something wrong. I don’t ask myself “Why me?” because “Why not me?” I hope to God this will help even one person, and I mean that from the bottom of my heart. A young woman, Holly (who gave permission to use her name), reached out to me when her husband, Brandon, was going through the last phases of his life. He didn’t qualify for transplant because the cancer had spread. But she sent me a letter in the mail during her deepest, darkest moment and asked me to fight for him. That meant everything to me. My entire care team at University of Chicago— Dr. Franses, Dr. Barth Dr. Pillai, Dr. Katipalli, Dr. Lamatina, the nurses, phlebotomists, imaging staff, receptionists—they were my village and my hope. I built relationships with them because I became very comfortable with them. They gave me strength every single day. It’s a second chance at life, and I am not wasting one minute of it. I am going to live my life to the fullest.

FOR YOU (CAREGIVER):
What’s it like seeing your mom on the other side of transplant?
When you first get the diagnosis of cholangiocarcinoma, it’s very hard to see any light at the end of the tunnel. Getting here came with tons of ups and downs, lots of not knowing, and many days spent waiting for scan results. Seeing her thrive again after a year of watching her go through the trenches and lose everything is the best gift this life can give. There’s a perspective on life that she has given me: Yes, life will get hard, but we have to try our hardest to embrace every moment this precious life has to give us. To find joy in the small things. To find joy even in the hardest moments.

How has your daily life changed now that she’s recovering?
A lot has been lifted off my shoulders because we all feel a little bit more safe now. We know that nothing is guaranteed, but the only way I can describe it is it felt like we were running for almost a year, and finally, now months after transplant, we feel like we can breathe a little bit. There are far fewer doctors’ appointments and much less care coordination.

What does this milestone mean to you and your family?
We called the transplant “Mom’s Super Bowl.” We can’t believe we made it here, but we are so grateful for the love and support from everyone who helped us get here. Mom gets a second chance at life, and we are not wasting a moment of it.

What emotion best describes where you are right now?
Relieved is the first thing that comes to mind. Relieved that a lot of her suffering is gone. Relieved that I get to spend more holidays with her. Relieved that I get to hear her voice every morning. Relieved that when I am going through something hard, I still have my mom to call. Joy is another word I can use to describe what I feel. Pure joy.