When I was diagnosed with Fibrolamellar in 2001 I remember thinking life as I knew it would never be the same. My future seemed uncertain and my mind swirled with thoughts of how to navigate what seemed to be the scariest most unknown cancer diagnosis I would ever encounter. I quickly learned that my doctors knew very little if anything about how to help me and so began my lonely journey of learning as much as I could and advocating to save my life.
Today, some 22 years later, I have learned how appreciative I am to be here. I wake each day with a grateful heart and make the most of the blessings I’ve been given. I believe this disease, as horrible as it is, has given me a gift. The ability to appreciate all I once took for granted and to truly live life as though it was my last day. It has not been an easy journey and after 5 liver resections, countless ablations, biopsies, clinical trials, immunotherapy treatments, chemotherapies, 2 lung surgeries, and a living donor liver transplant to name some, I continue to battle on and see my next beautiful day. I have gone through more oncologists, doctors, surgeons, and radiologists to count. One vitally important thing I have learned is to listen to my body. I learned it is okay to question the doctors, seek out second or third opinions and to say no if it doesn’t feel right.
Through my fight I have been given dreadful news countless times, if I would have listened to what they told me I would’ve given up and been gone long ago. Each time I was told “there is nothing more we can do, seek out palliative care, surgery is not possible, it is time for hospice, and a transplant will never be an option”. When faced with all of that I decided to lean on HOPE and began to understand saving my life was now my full-time job. I became determined to prove them all wrong. My purpose for writing this is to tell YOU, everyone touched by this disease, to never give up HOPE! The only thing I had for a while was Hope…Hope to see another day, Hope that a doctor would give me some shred of good news, Hope in the possibility of a miracle. I am a testament to that!
I realize now that Hope is powerful! Hope can give you strength and Hope is sometimes all you have. Hope comes in many forms, for me it is the love and support of family, dreams for my future, optimism in the face of uncertainty and faith. I am surrounded by people who care and encourage me endlessly, including one of our most selfless advocates in the fight, Tom Stockwell, who has been instrumental in guiding me to where I am today and has tirelessly dedicated himself to help fibrolamellar fighters everywhere. I am hopeful that as we continue on this path with strength and perseverance in our hearts one day soon a cure will be found.
Terra Goudge lives in Moorpark, CA. She is a Patient Advocate with the FibroFighters Foundation.