Hello. My name is Bekki.
I am a 40-year-old mother of two children, Grace, 9, and Connor, 7. I am incredibly lucky to be married to my best friend and love of my life, Jason, who is the pillar of our family. We live on the Central Coast of California (between Los Angeles and San Francisco) on a little 5-acre ranch that we recently purchased - in the middle of a pandemic, with stage 4 cholangiocarcinoma, while traveling to be on a trial, and waiting on the transplant list in Chicago, IL. It’s crazy how life just keeps plugging along no matter your diagnosis or challenges.
A little background on me. I share because when I was first diagnosed, I racked my brain to see where I erred in my self-care and life choices to end up with such a dreadful disease. Four years later, I've concluded it was nothing I personally brought on myself, just terrible luck. One less burden to carry! I predominantly grew up in rural California. I graduated from UC Santa Barbara, traveled a few years, and enjoyed my marketing career. I settled down in my 30's. I got married and realized my lifelong dream of becoming a mother. I was in heaven. After Connor was born, I never really felt "right." I've always been slim, active, high energy, healthy, strong. My best friend was first to notice that something was off. It was severe right shoulder pain that brought me to the doctor. Nothing. I was tired, but who isn't with two children under the age of two?
October 2016, I sent my family off to breakfast while I headed over to the ER for abdominal pain. I thought I had appendicitis. To my utter horror the doctor came in, ghost white, and explained that I had a large 11cm tumor in my liver. She encouraged me to arrange a follow-up appointment with my doctor. I literally couldn't hear a word she said.
UNAWARE BUT MADE THE BEST OF IT
Fast forward to February 2017. I was told I had an unresectable tumor (Stage 3b). I wasn't aware of the magnitude of this statement, or how vital a second/third/or fourth option was! Thankfully, a very skilled surgeon on a tumor board at USC reviewed my case and agreed to attempt a resection. My resection was almost discontinued mid-surgery but miraculously was completed. Unfortunately, clear margins were not achieved, but the tumor was out and there was no lymph node involvement. My adjuvant therapy consisted of six months of gem/cis, radiation, and 6 months of xeloda.
I made the best of my year of adjuvant treatment; I had mild side effects. I thoroughly enjoyed the following year of no treatment! It was a time of gratitude, lots of memory making, and I'm not going to lie, worry. Being NED (No Evidence of Disease) for two years felt like maybe there was a chance that my resection was - dare I say - curative? I think one of the most surprising and hurtful aspects of my cancer journey has been that I “looked" healthy, even "great" to outsiders. Even some of my family did not accept that I had/have cancer - an aggressive incurable one at that!
SOMETIMES IT GETS WORSE BEFORE IT GETS BETTER
May 2019. It's back! Hurry and get it out of me! My original surgeon scheduled another resection ASAP. Looking back, perhaps we should have considered a more systemic approach, but the panic and urgency to remove won and we resected the 8cm tumor and a few satellite tumors along with a sliver of my diaphragm. Clear margins! Easy recovery! No adjuvant care - this time!
November 2019. Dear Lord, it's back. And there's a lot of little tumors everywhere. Everywhere in my liver, and that's key. It was nowhere else. I was accepted into the BGJ398 Trial, January 2020. Of course, I was put on the placebo arm. Gem/Cis for three months until it failed, then I crossed over to the trial drug infigratinib. After 14 pills of infigratinib my heart started to fail, although I did see a 30% reduction in my tumors. Hooray for that!
While receiving all my oncological care from November 2019 to present, I was doing everything in my power to explore and be accepted as a transplant candidate, anywhere, but particularly University of Chicago. I needed to demonstrate six months of stability or tumor shrinkage to be eligible. I had countless tests to pass (PET scans being the scariest!) Never in my life have I felt such a race against time. Many people asked me: “How do you keep your hope alive and remain so positive?” Hope is a funny word. So is warrior. So is survivor. Or maybe it's just me? I am just a woman, a mother, simply a human being holding my breath. Waiting for fate. I am frozen. I am surrounded by love and hopeful loved ones but alone facing my mortality. Certainly not a warrior; I'm fighting, but I have no other choice. Not a survivor; I never felt that way, "NED." Ironically, I never was as it turns out. Hopeful? Maybe deep down inside but hope scares me. I've seen so many ascend to heaven before me who were so much stronger.
WHERE AM I NOW?
November 2020. I am thrilled to report that I am recovering from my liver transplant! And not just a liver transplant, but a live liver transplant! My sister was my donor, as my MELD score was so low, I never would have gotten a cadaver liver in time to save my life. Talk about love and renewed hope! I am healing quickly, I feel great, and in my four-year cancer journey I finally have experienced the comfort and peace a multidisciplinary team can provide.
Having faith in my team has brought me surprising amounts of hope. Even if this transplant fails, or my cancer comes back (which both are a real possibility), I know I can face it with a team that cares about me. Doesn't that sound silly? All the degrees and experience aside, the humanity and kindness of these individuals has renewed my hope along with the selfless love of live donorship. My Thanksgiving wish for all my fellow cholangiocarcinoma friends is that each and every one of you find a team, a doctor, a donor, or healthcare provider that can give you hope, even if it's just through comfort or kindness.