One of the people I credit with extending my life is struggling for her own. Over the past eight years, Alesha Arnold has served as the research nurse caring for me in a cancer clinical trial. In the summer of 2019, this bright young woman — she is in her 40s — was shocked by a diagnosis of Stage 4 lung cancer. A specialist in oncology, Alesha has always embodied the sedulous intelligence of our finest medical professionals, but now she also clarifies the unique problems faced by people with lung disease.
Unfortunately, these issues can begin with delayed diagnoses. Since 2009, Alesha had symptoms — in particular, a chronic cough and subsequent back pain — that doctors dismissed or wrongly attributed to allergies and kidney stones. A series of tests yielded indeterminate results. But since her symptoms did not subside, she was eventually given a CT scan, which showed multiple small bilateral lung nodules, and then a bronchoscopy.
Alesha herself had been on the lookout for breast cancer, because her mother was diagnosed with it at age 45, and died of at 51. She did not place much emphasis on the fact that her grandfather, a heavy smoker, had died of lung cancer when she was a child. During the period of delayed diagnosis, Alesha’s disease reached a stage deemed incurable. For this reason, she argues that primary care physicians need to interpret their patients’ conditions without assuming that age or family history can be used to rule out any sort of disease.
A gene panel test established a germ line mutation, indicating to Alesha that her grandfather may have unknowingly passed on a genetic propensity for lung cancer. She wanted her brother to be tested so he could learn about his risks. Despite qualms, he says he is considering the idea. His hesitancy has persuaded Alesha that the public needs to be educated about the usefulness of genetics in early detection and treatment.
The mutation made it possible for Alesha to receive a targeted therapy, the oral medication Tagrisso (osimertinib). People on this drug are told that it can delay disease progression for a mean of 18.9 months. She hopes to defy these odds as well as the general five-year survival rate for lung cancer that has metastasized to the bones, which is less than 10 percent, since these rates are based on previous outcomes of a large number of people with different types of cancer and vary on a case-to-case basis.
As a goal, five years might sound good to patients in their 80s, but to Alesha five years sounds not good enough. Five years from now her daughters will be 15 and 20, too young to lose their mother. She tries not to brood over the graduations, weddings and grandchildren that she may miss. Instead, she focuses on new treatments, such as targeted therapy and immunotherapy, which have been a game-changer in extending the lives of lung cancer patients.
Alesha remains convinced that cancer has made her a better nurse, one doubly dedicated to cancer research. The targeted drug that she believes is extending her life was approved for her indication only in 2018. Of course, she rarely shares information about herself with most of her patients. “Our time together has to be all about them,” she tells me. Yet their pressing issues, taking her thoughts away from herself, ease the self-absorption and the stress. Dealing with hospital logistics for patients as she copes with her own cancer, she better comprehends their anxieties about scans, their terror of statistics, their need for empathy, and their resentment of stereotypes.
“Why does everyone assume I must have smoked?” Alesha asks me, laughing. She noted that 20 percent of lung cancer deaths are in people who never smoked, but because the disease is associated with smoking, she believes patients are regularly and unjustly blamed for their illness.
“Lung cancer accounts for 25 percent of cancer deaths, but less than 10 percent of research funding,” she said, adding that “lung cancer kills more women than breast, ovarian and uterine cancers all combined, and yet it receives relatively little attention.”
Because her lungs are compromised, Alesha works from home during the coronavirus pandemic. She hopes to continue guiding her physicians who have proved themselves willing to accept her input about approaches to scan scheduling and treatment options in part because many of them have worked with her productively in the past.
Over our eight years together, Alesha frequently assured me, “Susan, I will follow you until the end.” She meant that regardless of which doctor oversaw the clinical trial in which I was enrolled, she would be my nurse until the end of my life. Now we engage in small recommitment ceremonies, often over the phone. With a catch in our throats, we say that we will follow each other as friends till the end of our lives.
There are no adequate words to give thanks to those who trudge along with us on the cancer trek, especially those who assist us while they themselves remain vulnerable. We reach for symbolic gestures. So, I send this tribute to Alesha in the month dedicated to raising awareness of lung cancer and on the occasion of a Thanksgiving in perhaps the most difficult year any of us has ever before encountered, one in which not only cancer patients witnessed the daily heroism of health care workers.
Now let us praise our cherished and always endangered nurses. Let’s do so making a joyful noise, yes indeed, but also with a strong commitment to safeguard their well-being in a future it is impossible to imagine entering without them.
