Long-Term Survivor Stories - Ellyn Goodrich
MY STORY
I am a patient and an advocate, but first, I am a mother to three amazing sons.
I live in the Pacific Northwest on a remote island in the San Juan archipelago. It is only accessible by boat or plane, and it does not have any traffic lights. The rush-hour consists of ranchers moving their sheep from one farm to another.
I spend my days at the local elementary school where I am a Special Education teacher. I love my job and am grateful that I can be every student’s champion.
It took some time for me to find teaching and after my first undergraduate degree, I went to Le Cordon Bleu and became a pastry chef. I was quite passionate about chocolate and spent several years playing in kitchens. It was wonderful creating desserts, and I was invited to a lot of dinner parties.
My excitement for sweets is balanced by my love of tennis and hiking. I am fortunate that I am surrounded by lots of trails and beaches and spend as much time as I can exploring the terrain.
My world turned upside down in December 2016 when a trip to the ER resulted in hearing those three words. I was airlifted to Seattle. I had a liver resection, and I was diagnosed with Intrahepatic Cholangiocarcinoma. I was stage 2b and advised to follow the standard of care; six months of chemo with a cocktail of gemcitabine and cisplatin. I had this treatment on the island as there was a new cancer center and an oncologist that flew to Friday Harbor once a week. I was usually the only patient in the infusion center.
I followed that with six weeks of radiation and Capecitabine. I had that off-island, in America, and went back to Virginia Mason in Seattle where I had my resection. I spent the weekdays in Seattle and flew home on weekends. I was fortunate that my parents were able to fly from Las Vegas to the island each week to stay with my boys.
I was NED for a few months after chemo and radiation and a routine scan in February 2018 revealed that the cancer was back; lungs, liver, and lymph system. I was now stage 4. I had molecular profiling and found that I had the FGFR mutation. This opened up the world of clinical trials and I was on the Fight 202 trial for 14 months. I had progression and went off of the trial in October 2019. I had a successful liver ablation at that time and tried the FGFR inhibitor Balversa later in the year, but it was not an effective treatment for me. I went on Pemayre in June of 2020 and I had a partial response on my first scan.
MY DIAGNOSIS
I am trying to think back to D-Day, and it is all a bit of a blur. I was in the ER with my son, I thought I had appendicitis, and the doctor came to me with tears in his eyes and said I had liver cancer. I was on a lot of Dilaudid, but I had enough wits to see that the mass was very large, and Dr. Appleton was not feeling hopeful.
I had a resection a couple of weeks after that frightful ER visit, and I did not think I would survive the surgery. I quickly made a will and tried to write some letters to my boys and my parents. I had just separated from my husband and I was trying to find my groove as a single mom. My oldest son had just left for the Naval Academy and I remember trying to call his commanding officer to tell him to take care of my boy as I didn’t think I would get to see him again.
After surgery and hearing the ICC diagnosis, it took me several weeks to pronounce it and I had to look up how to spell it on each form I filled out as I was searching for an oncologist. My brain would not retain any of it. The surgeon shared that I was “lucky” as he was able to get all of the tumor. I was young and in good health aside from the 70% of the liver that he removed. I turned to Google and the statistics were very grim with cholangiocarcinoma and I was not feeling lucky, despite what the surgeon thought.
I believe in science and for me, that has provided a lot of hope. Knowledge is power and I felt hope when I learned I had the FGFR mutation and all of the information that was shared on my molecular profiling report. I devoured every website, clinical trial database, and daily Google Scholar Alerts about this disease.
I have an incredible support circle and I know that their love and care have given me so much strength. The CC Foundation has also been a beacon of hope and light and has infinitely made my world brighter.
FINDING THE RIGHT PHYSICIAN
It took me 10 months to find the right oncologist and it was a journey. I had an amazing surgical team, but my insurance would not allow me to stay at that hospital and the doctor that was on my plan actually said, “Your body is a garden. Cancer is the weed. Chemo is the weed killer. You have a bad weed and the medicines don’t usually work.”
The local oncologist was kind and followed the standard of care, but I knew I needed a specialist. I found Dr. Harris in September 2017. He offered an aggressive approach, shared that science was leading the way in new treatments, and helped me find my voice. He didn’t sugarcoat my diagnosis, but he offered hope.
CONNECTION TO CCF
The Foundation stresses the importance of finding care at a major cancer center and I believe that having quality medical attention is so important. Trusting my team brings hope and staying informed does as well. Again, knowledge is power and that translates to hope in my mind.
I feel that life is short, and you should eat dessert first. I don’t put much money into retirement anymore and I truly live in the moment. I buy good wine and I say, yes, a lot. I think that whatever brings joy is the right way and that we all need to embrace what brings love to our hearts.
I used to try to make every moment meaningful with my boys and now I just try and savor the moment. I don’t know about tomorrow, but I am going to try and live for today.