One of Seven Hundred

I was nearly finished with high school when I first imagined I could be a writer. Once word spread, I received a number of journals from well-meaning friends and family. Some were leather-bound and some stitched by hand, yet I preferred the mass-produced, inexpensive alternatives, especially the pocket-sized notebooks I could slip in the front pocket of a shirt. I use a similar, more durable brand of notebook now, and their pages are less a record of my day-to-day life, serving instead as a small warehouse where I stow images and curious twists of language.

My “pocket journals” from the late-1990s.

Valerie kept notebooks of her own and did so throughout her life. At times, she made a goal of writing every morning and, at times, Valerie used that space to question why a daily quota proved difficult. Her journal was also a place to explore her hopes and struggles, and she sometimes vented her frustrations, including those with our relationship. I know all of this because I’ve read some of these notebooks, doing so a few pages at a time and with a mix of apprehension, heartache, and humility.

“If you read someone else’s diary,” says David Sedaris, “you get what you deserve.”

In the last years of her life, Valerie used a variety of colorful but rather ordinary composition books purchased at our local Dollar Tree. After she died, I chose one of these unused notebooks from her closet and its pages soon became invaluable, first as a place to take notes during therapy and then as I started to shape—sentence by sentence—these accounts that circle and delve into loss and grief. 

Valerie’s cancer was unusually rare. She repeatedly compared her diagnosis to “winning the lottery.” She’d wait a beat, as one might for a punchline, before adding, “the wrong lottery.” We were grateful that we lived in Chicago, where there’s an abundance of specialized doctors and medical resources; however, without much “literature” and few case studies for Valerie’s condition, the path forward felt equivalent to guesswork. Each treatment—surgeries, pills, an experimental drug trial—was followed by a wait-and-see, cross-your-fingers period of hope that never lasted long enough. While the “tumor board” (yes, such a thing exists) met weekly to discuss their patients, the latest scans inevitably showed growth and additional nodes, typically on the tissue of Valerie’s lungs. In the end, no one could explain why the cancer turned aggressive and spread to her brain.

Valerie’s last notebooks.

I think of what follows below—transcribed from a blue and white notebook dated October 2018 through the following April—as the first draft of a poem. Valerie’s lines are double-spaced, allowing the reader a moment to consider each statement, but the absence of periods (except for one at the very end) gives the poem momentum as the language cascades down the page like a waterfall or, more appropriately, like tears. The poem uses anaphora—the repetition of a word or phrase at the beginning of each sentence or line—as a springboard to document feelings of frustration and helplessness when a healthcare system falls short in helping those with rare diseases. In this case, the disease is endometrial stromal sarcoma (or ESS), which represents just 0.2% of all uterine malignancies. Only one or two women per every million women are diagnosed with ESS, with less than 700 cases diagnosed annually.

In her own journals, the poet Sylvia Plath wrote that writing is “a way of ordering and reordering the chaos of experience.” Valerie made so many attempts to shape her suffering, gain perspective, and live a longer, healthier life. These efforts included her writing and, in sharing her energies here, I want to believe I have her blessing.

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From the pages of Valerie’s journal, April 2019.

700

700 a year

700 women a year

700 women a year are diagnosed with endometrial stromal sarcoma

700 american women

700 unacquainted women

700 women a year

700 american women each year is not a market

700 american women each year is not enough women to make a market for a research study

700 american women per year is not enough to fund a drug

700 american women each year is not enough to justify a research study

700 uteruses, ovaries, cervixes are not enough

700 tries at letrozole or megace

700 years of 700 women having 700 years of bone pain, broken, grinded glass feelings in their bones is not enough

700 years of lung metastases

700 years of bladder metastases

700 CT scans, ultrasounds, contrast, iodine flushes

700 lung surgeries

700 is not enough, so that when she tries the guesses and none of them work, she looks at the literature, sees projections of life measured in months and number-decimal-point-number years, and she sees she’s a part of a system where

700 is not enough.