As told to Erica Rimlinger.
In 2016, I sought treatment at an emergency room (ER) for shoulder pain due to backpacking. I explained my situation to staff members and explained my suspicion that it may have been caused by pinched nerves from hiking 15 miles. Expecting a shot, followed by instructions to see an orthopedist, instead I received news that colon cancer had spread to my liver requiring treatment from an oncologist.
How did this happen? My first encounter with incredible luck happened when an ER doctor became curious after discovering an unexpected result in my bloodwork. If he or she had been tired that day or slightly less curious about me as a woman with a shoulder injury, there would have been no indications that colon cancer existed since there were no symptoms at the time. Instead, he investigated deeper. First he ordered an ultrasound of my liver while I protested “I’m just here for my shoulder,” followed by CT scan results which completely changed everything and left all involved forgetting why we were all there in the first place!
On the following day, my oncologist conducted a colonoscopy and discovered my colon was full of tumors that were spreading. She estimated I had six months left; chemotherapy might extend life enough so the tumors can shrink enough for surgery but, unfortunately, he believed surgery may never happen and advised me to arrange my affairs before leaving this earthly world.
Affairs? Order? Affairs? As I was only 42 when diagnosed, my sons’ wellbeing were my top priority. To avoid making them think that their mom had given up hope on them, chemotherapy became my weapon of choice and after 12 rounds was finally successful in getting me to surgery with just enough time remaining to survive surgery at Cleveland Clinic – who took an extraordinary risk in offering to remove right lobe of liver and colon as well as install HAI pump which provides direct chemotherapy delivery directly into liver organ. Eight months had gone by since my diagnosis!
After having undergone numerous surgeries to repair scar tissue or address issues from earlier ones, I adjusted to life with no colon and half a liver that was meant to slowly return to its former size. But in August 2017 I became extremely ill, my eyes turning yellow– a telltale sign of liver problems caused by all those surgeries aimed at eliminating scar tissue or fixing issues caused by other surgeries on it. But my liver, already under strain from multiple surgeries for scar tissue removal or repairs caused by other surgeries was failing me and needed immediate surgery itself to save it from failure – but I had already endured several more.
My doctors had always had a plan B in the back of their minds; but now, my doctor sat on my hospital bed and gave me some bad news: I don’t know what we can do to keep you alive.”
And yet there was one more possibility, so remote that it seemed nonexistent: Liver transplants for people in my condition and stage of cancer hadn’t ever been used successfully in the US before my diagnosis, yet I was young when diagnosed and as healthy as ever despite this cancerous development in me.
“My journey began by seeking out a donor through Facebook ads and asking my church congregation for support. According to my religion, if one needs something one must declare it. Fifty people came forward offering assistance. Jason was my perfect donor match; doctors extracted half his liver on April 23, 2018 and transplanted it into mine.”
Over the past seven years, I’ve come to appreciate our time on Earth is limited and mortality cannot be seen off in the distance. Cancer taught me ownership, how to claim narrative, express my truth and reclaim myself in the present tense. With more opportunities ahead for my family and me to live our best lives possible while leaving behind what no longer serves us, life’s precious opportunities should not be wasted away on things that no longer serve us well or serve no useful purpose.
Through my advocacy work, I met Mike. We both were stage 4 cancer survivors; initially I didn’t want to get involved because we both shared it; however, soon realized love should be measured on quality rather than time spent together. Mike died peacefully in my arms on March 4, 2022 and I feel profoundly fortunate for having shared such an unforgettable relationship – without cancer I never would have experienced being truly loved!
Life has changed greatly since my diagnosis; no longer am I the same person before cancer. Leveraging my training as a teacher, I now specialize in patient resource coordination and advocacy work – my most profound experience yet! In doing this work I truly feel that my purpose has been fulfilled right here on Earth.
Through my journey, I also realized how fortunate I was. I had access to top quality care, insurance coverage and advocacy skills – something which at first I didn’t realize wasn’t typical but is in reality not.
As I began providing patient resource care, I recognized my privilege. Recognizing it has inspired me to voice my opinions more forcefully about why we must do better; people are dying from medical negligence.
Cancer isn’t my story – rather, the beautiful relationships and outlook on life I’ve gained as a result are. And my story continues today.
This resource was produced with support from Merck.
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