In the pediatric cancer community — a community I was unwillingly initiated into when my daughter was diagnosed in 2017 — we often connect with one another about the hidden “costs” of our children’s treatment.
The financial costs of pediatric cancer treatment are astounding, to the point of becoming almost abstract. We were fortunate that our insurance held water when pushed to extremes. But the financial hits often take place outside of the realm of insurance. When you have a small child with a serious, life-threatening illness who needs a full-time health advocate and comfort provider most families lose at least one income — sometimes the only income. Every family I’ve encountered in my new community has been pushed to the edges and often beyond their financial limits.
But those numbers, no matter how large, fail to convey the full expense that comes with cancer.
To distract myself from the banality and frustration of figuring out our own expenses, I began to ponder what might be buried beneath that word: expense. Though I haven’t taken a class since high school, strangely, I think of Latin all the time. Words still make my head tilt with wonder.
The root of expense is the Latin verb pendere, which means “to hang, to pay or weigh out.” I picture an ancient marketplace where a purchaser hands over heavily weighted goods draped over their arms to a vendor in a small stall. The weight of the trade, hung out to dry might bend the branches of a tree limb.
Some expenses feel like that. They are hard to pay out, to fork over an exhaustive weight that costs more than others can see. What we ‘weigh out’ in exchange for the basic things — food, shelter, clothing, childcare, planning for the future, repaying debts from the past, and health — is simultaneously costly and priceless.
Concrete calculations don’t always cover the costs of having a medically complicated child. Like hours spent in the hospital, work opportunities forgone, gray hair gained or shed, marriages that have buckled under the strain, families who file for bankruptcy, the mental health of physically healthy siblings, and beyond. Statisticians might be able to quantify many things, but how can they capture the experience of a medical family?
How can anyone see what we’ve had to hand over in exchange for (hopefully) destroying a tumor in our babies? Perhaps their fertility? Or a functioning immune system? The ‘trade off’ might be a secondary cancer down the road caused by meds used to destroy the current cancer.
I imagine the woman at the ancient marketplace place again, her arms empty. “Take all that I have.”
I keep a whiteboard on my fridge to plan our meals. Friends in my kitchen seem to enjoy seeing the ambitions of a home cook who has surrendered to real life with things like, “THU: Breakfast for dinner” actually written down.
During our daughter’s cancer treatment, the whiteboard became a critical tool for her health care. Food took a backseat to medication schedules and fever documentation. We weren’t really eating anyway. We lost weight, eating only to survive. My daughter lost the most, at one point nearly 20% of her BMI. She was six years old at the time.
And how else could we keep track of the med schedule? Every six hours for one medication. Three times a day with meals for another. Once in the morning and once at night without food for yet another. Checkmarks drawn with a time codes and initials, so we knew who gave what when.
My love of words teased me as I squeaked out the names of various medications with a dry erase marker. Cytarabine. I wondered how something that sounded like a misty, forgotten land of castles you might find in a George R.R. Martin epic was actually a chemical crafted by the pharmaceutical industry designed to kill cells.
Stuck in the bottom of the whiteboard’s frame, a business card with the manager’s name of the pharmacy that would deliver chemo. I was on a first name basis with this man, and we would banter casually over the phone as he pulled up our account. Those moments reminded me of a person I used to be, a person who could ‘chat’. She felt far away.
One unexpected loss that surprises me, is how I stumble in small talk with casual acquaintances. How long can I chat with someone before I trip on landmine of the last two years? However, I seem to have traded in my capacity for easy small talk for a more authentic opportunity to connect with others. Once I share a little of my family’s story, I feel the conversation shift from the surface to a deeper level. Often people reveal something to me that they have endured. It’s not a moment of one-upping. No, this is about understanding that someone else — it could be a total stranger — knows the same secret you know.
The secret is that loss, grief, pain and fear are terribly real. More real than you ever imagined. But you pay the steep price, and somehow, you keep going.
The ghosts of meds past left a purplish shadow on the whiteboard that wouldn’t wipe clean. In an effort to try to feel less haunted, I threw it away and got a new one. Thankfully, these days we are all eating meals again — my daughter, too. I’m back to my ridiculous dinner planning: “ WED: Leftovers! Cereal!” and I don’t bother trying to calculate the cost.