I was diagnosed with stage IV adenocarcinoma at the end of July 2019. As a female non-smoker, I was shocked. But I shouldn't have been. Unlike many people diagnosed with stage IV lung cancer who did not experience symptoms, I had respiratory issues for several years prior to my diagnosis, and chest pain led me to the ER in 2017 and 2018. The chest x-rays showed nothing unusual according to the reports, and in 2018 I was told it was probably a pulled muscle. So, I am passionate about improved diagnostic screening procedures and tools for all, including non-smokers who tend to be left out of the screening protocols.
I was a consultant but retired the day I was diagnosed. While I miss work, I was already retirement age and faced the reality that I no longer could work at the level needed to do my job.
I was extremely ill by the time I was diagnosed and didn't have time for second opinions. My oncologist was recommended by my medical practice, had the largest oncology practice in my area, and had saved a close friend's life from Stage IV throat cancer. I did not have enough tumor for full biomarker testing, but I did test EGFR positive on a blood test. My oncologist recommended chemotherapy, so I started carboplatin/Alimta/Avastin infusions. I was fortunate, as I responded quickly to chemotherapy with tolerable side effects.
I chose to be very open about my diagnosis. I developed a Caring Bridge site and opened it to anyone who wanted to follow my journey. My cancer diagnosis and treatment were extremely difficult for my husband, but we were fortunate to receive extensive support from family and friends. We had family or friends staying with us over the weekend after treatment, when the side effects were the strongest. Texts, emails, calls, visits, meals and other support raised my spirits. Friends volunteered to take me on what I called jailbreaks, which were short trips to Starbucks or other nearby coffee shops, which gave my husband a respite from caregiving and me respite from fighting cancer.
While I was going through my treatments, a friend with breast cancer started her final journey. Her death shook me to my core, and I asked for advice from my oncology team as to whether I should go to the funeral. Their advice was not to go because of potential exposure and the emotional cost of going at a time my own survival was in question.
My commitment was to do everything I was asked to do to fight cancer. I was fortunate to be supported by an outstanding oncology team. I give special credit to my nurse navigator Angelita for helping to save my life. I trusted her from the beginning, and when I was failing before starting treatment, she advised me to go to the ER and accelerated my first chemotherapy treatment. My team's dietitian helped guide my approach to eating during chemotherapy. The team encouraged exercise, so I continued to exercise even when I was on oxygen.
A major challenge occurred when my oncologist retired. While there was some warning, I was not ready to go to someone else, and I found the process upsetting. Until then, I had been careful about my approach to the scientific literature relating to lung cancer. I avoided statistics as I did not want to become discouraged and avoided studies as I did not want to second guess my treatment. Upon my oncologist's retirement, I decided I needed to take more responsibility for my own care and did a deep dive into lung cancer related literature (I have a master’s in industrial health, which prepared me to read and understand the literature). Now I am much better prepared to advocate for myself.
After eight infusions, my PET scan showed I was no evidence of disease (NED). I learned I was NED on March 7, 2020, and on March 8, my husband and I went on lockdown because of COVID-19. We never even got to celebrate my NED status by going out to dinner.
I went on Avastin for maintenance but developed PRES, so I was prescribed Tagrisso in August 2020. I get scans every three months, and so far, I remain NED. I have some of the usual side effects - brittle nails, thin hair, fatigue, and GI issues, but they are manageable.
I think cancer prepared both my husband and me for the physical and emotional challenges of COVID-19. Our lives were greatly changed during the chemo part of my cancer journey. I no longer worked, I stopped driving, and we stopped almost all travel and group activities. We never were completely isolated because of the support we received, but we certainly were much more isolated than before.
We took COVID seriously from the beginning. Family and friends caught Covid, and a number of them were on ventilators for extended times. My cousin Suzi died, and another cousin and a high school friend have experienced long-term effects. We isolated ourselves at home until we were vaccinated – no errands, no in-person social life, no travel, just medical visits. Instead, we made a rich online life for ourselves with study groups, book clubs, webinars, movies, and exercise.
Our approach was not based on fear. Instead, it was based on our practical understanding of the Covid risk to lung cancer patients. While I regard faith as a private matter, prayer, meditation, visualization, and affirmations gave me strength during lung cancer and again during COVID. One trait that was helpful to me was equanimity, the inner quality that helped me deal with the ups and downs of my illness. My favorite affirmation was “Ride the wave, do not get crushed by it or swept away.”
Now that I am vaccinated and still NED, I have slowly and carefully started to rejoin life outside our home. Each morning my husband and I start our day by saying words of gratitude for another day together. I am well aware of the physical, emotional and financial challenges caused by cancer, but my focus is on appreciating the life I have. I am thankful for the scientists, who made the current progress in lung cancer treatment happen in our time and to the advocates who are raising awareness and money in support of next generation treatments and someday (I hope) a cure.
Related Reading:
- Living with Lung Cancer During COVID-19
- Coming to Terms with a Lung Cancer Diagnosis
- The Importance of Community for Lung Cancer Survivors
Carol Robinson used her background in chemistry and industrial and environmental health as a partner in an Environmental, Health and Safety consulting firm. Her work focus included biotechnology, pharmaceuticals and medical devices. She served on various professional boards and committees, spoke at professional conferences, and was active in mentoring younger professionals. She retired the day of her diagnosis to focus on fighting cancer and recovering her health. Carol has been married 48 years and loves spending time with her wonderful caregiver husband Art and her daughters and granddaughter. She enjoys travel, reading, exercise, genealogy, Bridge and Mahjong, and gardening.