Amid My Husband’s Cancer Battle, I Found Solace in an Unlikely Place: The School Supply Aisle

When my husband was diagnosed with liver cancer, the first thing I did was buy school supplies.

This was not the initial superheroine move one might think; I wasn’t planning to enroll in med school to cure him myself. The trip to Staples was instead a surrender to the complicated and confusing slog of battling a large health issue in today’s health care system. My husband would most likely need lots of tests, doctor visits, medications, therapies…and someone would need to keep it all straight. It seemed unfair of me to expect him to keep track of it all. (He had just walked out of a cold white room being handed what was at best painful terror and at worst a death sentence, after all.) What could I do to help? I could remember all the names, addresses and phone numbers of the doctors, keep track of the medications, take notes in of specialist visits and maintain a running timeline of procedures, complications, symptoms and treatments. How to do this? By morphing into the best damn administrative assistant of all time!

Of course, you’re thinking, this would be the impulse of a naturally organized person, a woman whose closet is Pinterest-pretty and whose pantry has matching dry goods containers all attractively filled. Well, you’d be completely wrong. My bathroom cabinet overflows with half-used products I don’t especially like; I have desk drawers filled with bits of string and crumpled Post-Its and my car’s central console oozes with a viscous liquid that has fused coins into a sticky ball. Hi, I’m Dana, I’m sort of a mess!

Intuitively, I understood I’d need to bring someone else’s organizational A-game to the event of my husband’s illness. So I took a quiet moment at home to make a list of what I’d need in my binder: a plastic page to store medical professionals' cards (oncology trading cards, collect them all!), section dividers, a 1 ½” three-ring binder, a portable hole punch to make medicals bills and lab results fit in the binder. I bought plastic page protectors, one to slide in post-operative instructions, and one to slide in the timeline I’d update with his latest symptoms. I splurged on a label maker for those divider tabs (look how neat I am, teacher!), threw everything in my car and drove home to assemble it all, subbing in busy-busy-busy for W-T-F feelings, at least for the moment.

This isn’t some rogue impulse of mine: I remember a fashion editor friend saying to me, years after her breast cancer treatment, that in her mind’s eye she still sees herself racing to oncologist’s offices, lugging her heavy binder with her. And today, you can find thousands of Etsy listings for “wellness binders.” Many of these organizers are healthy, proactive downloadable systems concerning budgeting and well-being goals. But I know myself. I need nothing less than the sheer terror of non-existence to motivate me to use a portable hole punch.

Are these even helpful? No one has conducted a double-blind study of treatment success rates between binder people and non-binder people, however a 2022 Journal of the American. Medical Association study concluded that “use of common medical phrases may lead to confusion among patients affecting health outcomes.” [Italics mine.] For instance, the study reports only 67 percent of respondents understood that “positive lymph nodes” means a cancer has spread, which means that 33 percent of those asked thought something to the effect of, “Yay, I have positive lymph nodes.”

Perhaps my interest in writing down quotes and notating facts is a result of my reporter’s training. Once you’ve been on assignment and taken paltry notes only to arrive back at your desk, deadline looming, with only a fuzzy understanding of what you’ve just heard and seen, well you’ll start writing down everything you can. Because all the facts, all the phrases, all the news may not make any sense until you’ve had a chance to digest it all. And you never know what detail or turn of phrase might save your life—or at least give you hope enough to sleep through the night.

That sense of hope was the unanticipated benefit of keeping a wellness binder. It helped our family as much as it helped me spit out a list of my husband’s meds to some random attending physician. Somewhere, inside all the scribbling and filing, there was the small voice of the "A" student I had once been, asking: “If I take perfect notes, will you say I’m good enough?” Only this time, it said, “If we pay close attention and do everything you say, will you let him live?”

In the years since I kept my husband’s wellness binder, I’ve told other syndrome sufferers and trauma survivors to buy notebooks of their own. When a dear friend living in another city experienced an ocular stroke, I texted a list of binder elements to her caregiver to assemble as soon as she could. I made another one for my son’s protracted mental health interventions. The wellness binder has become a touchstone for me, an 8-by-11-inch plastic-and-paper worry stone that I can flip through for not only easily referenced information but also a strangely comforting keepsake of where we went, what we tried, who we saw, all with the goal of getting better. Somehow the dedication of building entries in the book gave me a sense of control over what is happening. It’s not really true, of course—but in my experience, it helps to have something to hold on to.

One of the big pluses of a wellness binder system is its customization, and extreme flexibility. My husband’s, which initially had tabs for “Timeline,” “Pharmaceuticals,” “Procedures” and “Medical insurance” morphed into including a tab marked “Nashville” (the trip we took to attempt to get listed on a less competitive liver donation registry), then “Hospice” and finally “Life Insurance.”  As it turned out, my street fighter of a husband waged his battle with a stage 4 cancer diagnosis for six years. I like to think of him coming in a proud second place by beating his five-year average mortality estimate, but sadly losing to Father Time, undefeated.

So while my keeping careful notes on my husband’s illness did not in fact save him, I don’t regret carefully attending to all the things as they happened. “There was a level on which I believed that what had happened remained reversible,” Joan Didion wrote about the death of her husband John in The Year of Magical Thinking. My binder, radiating power even now up in my closet, is my testament to our family’s determination to reverse what was happening. I strangely treasure this book today, the scrapbook no one ever hopes  to keep, and as I flip through it, I see the doctor brushing his hand against my man’s shoulder, and remember the kindnesses of nurses and parking attendants and scan technicians. I see our proud fight and not the season’s final score.