It is not the darkness of night that I fear but the sound that arrives upon the first morning light. A series of audio tones – three quick, accelerating notes on my phone, alerts me to a medical message. Some people might welcome those audio tones as a triumphant sound of efficiency. Blood tests processed and results sent to the patient almost instantly. But for me, those dings feel like an electric jolt to my body. I struggle to accept how patients receive medical results today. And it stands in stark contrast to how my mother was denied access to her results 50 years ago.
In 2021, my phone alerts followed a pelvic ultrasound. My gynecologist reported unusual “fluid collections” were detected and the significance unclear. To cover all possibilities, she ordered several tumor marker blood tests, each targeting a different part of my body.
My first phone alert arrived at 7AM on Christmas Day. I quickly sat up, lifted the comforter off my pajamas and stared at my telephone screen. I clicked in my four-digit code, hearing my heart race, waiting for the message to appear. The results of blood tests would either pronounce me in a normal range and allay some concern or the results would be flagged with an ‘A’ for abnormal, and I feared a slide towards death. There is always the disclaimer on the website: “You may see results before your clinician does.” I understand this means my doctor is not available to answer my questions. And, as it is the holidays, surely, nobody would talk to me. I alone would read numbers and ponder if I am in a safe zone? A scary zone? Somewhere in between. And I am left to ponder if I really could be reading my future off a five-inch illuminated screen?
My husband was asleep but I would wake him if I needed to. Alas, it was a false alarm, no blood results this morning; instead, my medical alert was for a letter with mammogram findings, the same note I had received in standard mail. Perhaps, I should have felt relief but I was numb. Even Christmas was not safe. I collapsed back into bed.
The next day was my birthday and 7 AM passed so I hoped for a normal day. I mashed bananas, tossed in a few blueberries for pancakes and then surrounded them with sweet maple syrup. I opened birthday cards and a gift box with a silk nightgown and felt the softness. But the day was not over, yet. When I heard those audio tones on my phone, it was evening. I imagined a friend was wishing me a happy birthday yet I knew that type of message emitted a different ping. I was afraid to read the results alone. I paced my hard living room floor, back and forth, until my husband returned from errands 15 minutes later.
We hovered over the app, punched in my code, and clicked. It was a message from the gynecologist who was working, the day after Christmas, on Boxing Day and my birthday. She was replying to my questions about fluid collections. But she chose not to respond to any specific questions, instead she sent me the entire unabridged radiologist’s report. Language suitable for medical eyes. “I hope it doesn’t scare you,” were the only words she added in her message to me. I spent my birthday night deciphering a litany of medical terminology.
My medical providers might say they are offering critical information in a timely fashion. Maybe if I complained about receiving these messages, they would delete my account. I do not know. We are free to read results but without a soothing voice to provide context or answer our questions. It feels so cavalier. I picture some anonymous technician who has first shift at the laboratory; retrieves the data, clicks a button and through the magic of technology, numbers arrive on my phone. And what should sound like a soft ring on my phone feels like the roar of a cannon.
How should doctors share medical findings? It is a subject I have considered since my childhood in the 1960s when patients could be denied access to their test results. Their true diagnoses were not revealed and sometimes even hidden from their families. I grew up in a world of such deception.
Hospital visits in my childhood were frequent as my father, mother, and sister all had serious illnesses. Daily life was so frightening that my grandmother refused to even allow the word, cancer, to be uttered in our home. When a public service announcement on the TV attempted to deliver the warning signs of cancer, my grandmother leapt out of our rust-colored recliner to change television stations. Remote control devices had not yet been invented so this overweight woman struggled to foist herself out of a La-Z-Boy recliner. Of course, silencing the words could not change her daughter, my mother’s, terminal cancer diagnosis. Words did not kill her.
In the 1960s, there were no cell phones and certainly no pings, dings or bugles blaring test results. My mother asked the doctors, wanting to know the truth of her condition. As her symptoms became more pronounced, my mother even pleaded with my older sister, to tell her all she knew, as if doctors would share the prognosis with a teenaged child. Before computers, physicians wrote detailed notes about my mother’s test results and diagnosis. I picture those doctors with fingers cradling pens, their ink staining pages.
But such notes were locked away. A select few members of my family learned the truth but did not share their knowledge with my mother. “She would not be able to take such news,” I was later told. She needed to believe she had a benign condition and they credit their deception with keeping my mother alive for five years, not the one-year expectation. But it came at such a steep price: a silence that tormented my mother and later, my sister and me after her death.
In 2021, almost a week after my blood was drawn, results from my fifth and final blood test arrived. It was the most worrisome test, CA125, a marker for ovarian cancer. After I clicked on the result, I realized that my eyes were filled with tears. I was holding my breath and my heart was racing. This test, like the others, was within the normal range.
I wonder what my mother would say if she could speak to me now, 50 years after her death. Would she tell me she would have preferred to know the truth? Maybe she would tell me how she would have taken that trip to France, her dream destination ever since she won her high school French prize. And perhaps, as a widow, she could have taken a Parisian lover. I sometimes imagine my mother with a charming Frenchman, walking hand in hand, chatting in flawless French, crossing the moonlit bridges over the Seine River. But these are my fantasies. The guardians of the truth in my family insisted my mother could not have handled such knowledge. Maybe she wouldn’t have completed her college degree; she wouldn’t have become a teacher. Maybe they are right. I will never know.
After my mother died, and the secret of her condition was shared with me, I wondered and worried. Would I want to know the truth if I developed a fatal illness? I was 15 years old and most teenagers at that age fret about schoolwork, fashion and dating but I thought of death and could I hold onto such a terrible truth? Could I continue to function during those final days? My mother had no choice. And, I also will have no choice. Truth-hiding is no longer an option, in this country, in the 21st century. Whether brave or scared, prepared or unprepared, I will be given a diagnosis and prognosis. But I hope if that time comes, I will not need to decipher abnormal findings off an electronic screen; I would hear words from a compassionate voice, while looking into the eyes of a real person.
Wendy Dodek is a writer and educator based in Massachusetts. Her creative nonfiction and poetry have recently appeared in Manifest Station, Wry Times, and Topical Poetry. Before the pandemic, she was the Lead Educator at the Museum of Fine Arts, Boston. These days, she teaches English to recent arrivals to the US.