In May, 1991, I was 36 years old. I was a police officer for a small city in the Seattle area. I was married and had one son, Garrett, who had just turned 3 years old. I had not been feeling well for a few months and had lost 10+ pounds over a year. My wife, Cheryl, made an appointment with a local family practice doctor. It was my first visit to this doctor. During my exam, he felt a lump in my lower abdomen and referred me for a CT scan the next day. The CT showed a large mass which appeared to be on my pancreas. I received this news at work, by phone. It was a Friday morning. I was told to go immediately to the hospital for a needle biopsy. Biopsy results indicated that the tumor was liver cancer. Because hospital staff never specifically said that cancer cells were not in the pancreas at that point, we went all weekend thinking that the cancer had spread throughout my body. In the next week, the diagnosis was that I had primary liver cancer — Fibrolamellar.
I met with a highly reputed Seattle surgeon and oncologist. A couple of weeks later I went into surgery, not knowing if they would be able to re-sect the tumor and leave enough liver to survive (or be a live-er). There were many surgical options and unknowns. I was not going to know the results until I woke up, if I did. They removed a cantaloupe size tumor and approximately ¾ of my liver. They also removed my invaded gallbladder and another separate hardened vein, all which came back to Fibrolamellar.
The next year was filled with radiation and chemotherapy treatments with a follow-up full-fledged surgery to feel around for returns of tumors. None were found. I returned to work and life went on with yearly scans.
My son grew up. We traveled much with family and friends, had many adventures and made lots of memories.
In 2000, I was admitted to the hospital. I accidentally swallowed a whole olive (pit and all). Due to side effects from radiation, the opening between my stomach and upper intestine is smaller than normal. The olive had lodged in the opening and resulted in a major system blockage and the need for surgical removal of the olive. Hospital staff entertained us with “martini” jokes during my stay and sent me home with strict instructions to “decrease olive intake”.
A scan in 2007 showed a new tumor in my neck. We were grateful to learn that it was thyroid and not fibrolamellar cancer. I had two surgeries to remove my thyroid and several follow-up radiation treatments. Again, life went on with the help of daily thyroid hormone replacement medication.
In 2016, after nearly 25 years of no recurrence of the Fibrolamellar, it came back as a small tumor in my liver. This was discovered inadvertently when I was scanned for a bleeding ulcer.
Another resection surgery, a recurrence and two ablation attempt later, I was not at all satisfied with my doctors, hospital or treatment plan. It was time for a change and second opinion. In 2018 I met with an oncologist at Seattle Cancer Care Alliance who referred me to a surgical oncologist to remove the tumor in the liver. He was also a specialist in Fibrolamellar.
I had the tumor removed but like my wife says, it turned in to a game of “whack-a-mole”, where one tumor was whacked and several more popped up. I had two tumors pop up in my diaphragm and one above my heart. All surgical solutions were now out because of all the treatment damage from over the years. When pain came to those tumors, I had radiation to reduce them and get rid of the pain. It worked! I also tried more chemotherapy. It did not work.
I spent the last six months (during Covid) getting my heavy lifting yard projects done and a going on a couple of bucket list walks/hikes.
In August 2020, I had just a little pain start slow and periodically in my left hip. It progressed to my left buttocks pain and left leg. A CT and MRI later determined a tumor had gone into the bone of my hip and another in the bone of the lower spine. The scans also showed tumors starting in my lungs. These are locations my tumors had never dared to go before. The scan also revealed all other previously identified tumors were growing.
As I write this, I am undergoing radiation on the bone tumors to get rid of the pain and maybe for a short time some good quality of life. I have instructed my doctor to start paperwork for Hospice and Death with Dignity (under Washington State Law) as soon as the radiation is done.
I am now nearly 66 years old. My son is 32. Cheryl and I have been married for 36 years. We’ve had lots of time to process all of this. While we are more than sad that time is now very short, we feel incredibly lucky to have had nearly 30 years since I was first diagnosed.
My advice to anyone dealing with Fibrolamellar is breathe deep, ask questions and get educated on it! Make decisions that are based on good information and what’s right for you and your family. Live your life to the fullest. Enjoy your family and friends. Take the trip, eat the dessert, be kind to the earth, recycle and make lots of memories all along the way!
Follow-up note from Cheryl:
Jerry passed on to his next life and adventures on February 9, 2021. Even in death, he continued his passion for adventure, educating others and saving the planet. He donated his body for Fibrolamellar research. He was one of the first people to have his body composted at the first human composting facilities in King WA. See www.recompose.life.