Meridith M., WI

Most people would describe my mother, Denise, as a force to be reckoned with and someone with an appetite for life and an endless amount of energy. She was kind and had a truly generous soul. In 2016, this non-stop woman started to slow down and wondered why she was experiencing relentless fatigue and why it felt like every bone in her body ached.

After six months of numerous doctor visits and running various labs, she demanded to have an MRI, as her symptoms were worsening, and she was worried she might have fractured a rib while gardening. In October 2016, she was diagnosed with late-stage EGFR mutant non-small cell lung cancer. It had spread to multiple organs, almost every bone in her body, and her brain. With no risk factors, this took everyone by surprise.

Unfortunately, her story is not one of survivorship. However, with further research and medical advances, we may be able to give more time to people, adding months, years, or hopefully decades to their lives. May 1 will mark the seven-year anniversary of my mother’s death, and reflecting on her experience, these vital pieces of her story still hold true for lung cancer treatment.

One of the critical pieces of her diagnosis was receiving biomarker testing. Through this tumor testing, it was discovered that she had an exon 19 deletion and her best treatment option was targeted therapy, as it has better outcomes than chemotherapy and often with fewer side effects. This was important to know from the start, since EGFR mutant non-small cell lung cancer is not responsive to immunotherapy. As my mother’s cancer advanced and mutated, she had another round of biomarker testing, which revealed a new mutation, allowing her to shift to a different targeted therapy. She had a unique type of cancer that consisted of lots of small tumors, and she couldn’t get enough tissue for a traditional biopsy. Past investment in medical research enabled her to use cutting-edge technology to identify the mutation through a liquid biopsy (a simple blood draw).

While a small number of very lucky people with EGFR non-small cell lung cancer can get years of effectiveness, my mother got several months. Unfortunately, after the second line of treatment failed, the best option was a clinical trial. When asked why she decided to enroll in a clinical trial, she said, “Obviously I want a cure to my cancer or at least live as long as possible to be with my daughters and husband. That is my hope; however, I know while this may not save my life, it could save someone else’s in the future. Cancer patients before me were in clinical trials that made targeted therapy a reality.”

My mother started a new job two weeks before being diagnosed with cancer. When she revealed this to her new employer, they advised her to resign, and as a probationary employee, she did not have many choices. Plus, at this point, she was becoming too ill to work. My father was months away from retirement. My mother was younger and would not be eligible for Medicare for another three years. Fortunately, my father’s COBRA was reasonable enough for them to cover the monthly premium. Given the circumstances, she was fortunate to have health insurance that did not routinely deny nor delay care. It was the fact she had good health insurance that gave her a fighting chance. My mother would often say it should not be lucky to have good health insurance, lucky to get medications approved, or lucky to have a somewhat affordable COBRA premium. It should be a given. As a daughter, I cannot imagine the deep fear and anxiety of having a mother with cancer who did not have adequate health insurance, whose insurance kept rejecting treatment and/or medications. It should be a given.