Providing hope to Cholangiocarcinoma patients by raising critically needed research money for this aggressive and deadly disease with no cure, and supporting them as they navigate their journey through mentoring, love and prayer.
Life was busy in 2010 with work, volunteering and engaging with our sons’ sports schedules. Being tired was just part of our eventful lifestyle. Consequently, when we received my diagnosis of stage IV intrahepatic cholangiocarcinoma at the age of 46, we were shocked. We believed we were investigating a possible gallbladder issue. Instead, we received a call saying I had a mass taking up over 75% of my liver. My Catholic upbringing taught me that Mass was good on Sunday, but a mass in your body was not good news.
My original prognosis was a life expectancy of six months with no hope of a surgical resection. At the time, this was the only potential curative treatment for cholangiocarcinoma. I’m rarely speechless, but I distinctly remember the piercing silence on our drive home. I felt like I was living in the twilight zone, and that this was all a vision, but not a reality. I foresaw two chairs on the beach, one with my husband in it, and the other one empty. I would be gone soon.
My husband, David, is the love of my life. We met at sixteen-years-old and planned to grow old together while watching our two sons, Jacob and Noah, create their own families. Suddenly, we had to figure out how we would tell our boys this devastating news. I didn’t want cancer. Cancer should not be allowed to take the security of my sons having a mother, or my husband having a wife. Instead, cancer had joined our family, and we had to accept it and learn how to process and survive with this new normal.
We immediately started researching cholangiocarcinoma, and the information we discovered was limited, and dismal. Our hope came in a second opinion at the Cleveland Clinic from my hero, Dr. John Fung. He surgically removed 78% of my liver in an eleven and a half hour surgery. After surgical recovery, six months of chemotherapy ensued.
Then I thought, okay God, I am done! Unfortunately, that was not the case. Over the next several years, I had five recurrences with eight more tumors. Further treatment included more surgeries, three additional chemo regiments and then something new, SBRT. I received another hero in my radiation oncologist, Dr. Kevin Stephans. Dr. Stephans had a new idea to try SBRT on two small tumors. Unfortunately, he received push back from our insurance provider. SBRT was not an approved therapy for cholangiocarcinoma. Because of the rarity of this type of cancer, there weren’t many approved therapies. The SBRT treatment had not been previously used on solid tumors in the hepatobiliary area.
Our frustration escalated as we learned how rare cancers were neglected in the medical community. Dr. Stephans and his multidisciplinary team of experts whom I nicknamed “My Survival Team,” were successful in destroying five tumors with SBRT. This was a crucial step in my treatment, and a positive one because it allowed us to remain hopeful. My third hero is my medical oncologist, Dr. Bassam Estfan, who continues to monitor and take great care of me.
Our anxiety level as a family was on high alert as we waited for blood work and scan results. Furthermore, our finances deteriorated with so many unexpected expenses not covered by insurance. I was no longer able to work. Cancer took a physical, mental, emotional and financial toll on our lives.
Up until this point, reading my story sounds like a nightmare, but in actuality, there have been many blessings along the journey. We promised ourselves, as a family, to turn this diagnosis into something positive, and we have. My husband and I mentor other patients and caregivers. I volunteer for an amazing organization, the Cholangiocarcinoma Foundation as a Research Advocate, Patient Advocate and CARE Team Member. We then started our own 501(c)3 foundation, raising crucial research money for this rare bile duct cancer. Our foundation is called Craine’s Cholangiocarcinoma Crew. We have been able to fund the development of a liver tumor bank and a PDX research bench at the Cleveland Clinic. Finally, and most importantly, our faith is stronger than ever and our family understands, appreciates and enjoys every day we can spend together. Now, we look forward to sitting in those beach chairs one day, watching our grandchildren play in the ocean while I hold my sweet husband’s hand. My motto has become: HOPE is everything. I love sharing my journey because I feel it gives others HOPE and courage to keep going.
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