In the Shadow of Relapse
In the Shadow of Relapse
Week 32: Safe Blood
HAPPY HALLOWEEN!!!
My piece about paid leave when Carolyn was sick is up with HuffPost. I’m grateful for the editors and team who gave me the space to share our story, along with key stats around the state of- and the need for- paid leave. Please, please, VOTE. It is not an exaggeration to say that lives depend on the decisions our elected officials make, and your vote counts.
I landed in New York at 9:40pm Saturday night, home from a week spent on a ranch in New Mexico with a group of amazing women writers who reminded me what it is to believe in myself and my work (more on this next week.) I rode the wings of that high across 2,000 miles, but as I stood at the curb at JFK soaking in the familiar smell of cigarette smoke and car exhaust, Carolyn texted me. My knees are aching, the blue bubble read. I can barely walk.
It was a long drive home. My mind raced. Dread snatched me into its grip like the shock of an ice plunge and I felt cold, slightly sick as the car weaved along the highway and I tried to keep my focus on my breathing.
I have another piece out this month in Write or Die’s inaugural issue, Private Terrors. In it, I wrote:
I often have a feeling that I need to keep moving, as if something if always chasing me down. Shadows haunt my periphery like phantoms in a rearview mirror. In a horror movie, the minute you sit down, you’re vulnerable. The minute you stop moving, the anxiety creeps back in. What-ifs that circle like vultures. Sometimes it’s worry over little things- catching up on loads of laundry before the week begins, or updating my voter registration. Other times it’s as serious as a man with an ax.
In 2020, my daughter was diagnosed with leukemia, and for nearly three years after I felt like there was always something lurking in the shadows waiting to get us. Even now, as she enters her second year of remission, there is a constant feeling of someone hiding in the back seat of my car or behind the closed shower curtain. I always feel a tension, my breath catching at the top of my throat, my heart hammering against my ribs as if it knows I am about to die.
I resisted the urge to reach out to anyone about my anxieties around Carolyn potentially relapsing. I’m wary of always crying wolf, and I know how quickly the emotional see-saw of “is it cancer, is it not cancer” can burn you out. I don’t want that for the people I care about.
I held back until a friend texted to let me know she’d left a gift by my front door— a pair of Terrifier 2 earrings we’d gushed over the week before. She didn’t know what kind of day I was having, or how badly I needed a nudge of support, but I came undone in my thank-you text to her. I let loose about the fear I’d been carrying, how every minute felt charged, how I was so tense I was tasting copper in my mouth. It was a relief to say it aloud, to lean against a support and feel held up by someone who cares about me.
I called our oncology team and they agreed Carolyn should go in. Her bloodwork would tell all, and we could make decisions from there.
The gears in my mind turned as we passed beneath the L, carving a winding path through Kensington on the way to the hospital and whatever information was waiting for us. Were we about to re-enter the maze of her treatment? I realized I hadn’t packed a bag. What if we were admitted to the hospital that night? I didn’t even have a phone charger. I’d picked Carolyn up from school with no prep, believing that I could ward off relapse through ignorance or sheer force of will.
The potential for the days ahead unfolded in my mind— the surgical slot for a port placement, the notecard with her assigned number on it, watching the colorful blocks on the procedure unit’s screen flip from pre-op to intra-op to post, the yellow fluids hanging from the hospital’s poles, the hair loss, the way the blue vinyl of the armchair stuck to my skin after I’d slept in it. What had just days ago been vague echoes now jumped into full color and sound, as if we were already living it, as if by fearing it I’d somehow brought it to life.
We have friends who have experienced relapse and whose kids have relapsed. I’m careful of the language we use— I don’t want to paint relapse as some great stake of fear poised above my heart because I don’t want to send the message that the life these people are living is something to be feared. I remember the sliver of fear I used to see in parents’ eyes when they looked at me. I remember knowing people were afraid of my life, and I remember resenting them for it.
And yet, a small, glinting chip of terror stays lodged in my heart. At the bottom of a deep well of excuses and placations and reasoning lives a dark, stark truth: I don’t want my daughter to have cancer again.
Earlier this month I’d ordered us matching O blood bag earrings because ‘tis the season, and we’re both O-type (her, O+, me O-). ‘SAFE BLOOD’ is printed on one side. It seemed like a strange phrase— the implication being that there is ‘safe’ and ‘unsafe’ blood. What were they inviting in or warding off, these strange talismans direct from a Philly-based jewelry maker?
Each time the earrings brushed against the tops of my shoulders I thought about the dozens of bags of blood that were hung from hospital poles over the course of Carolyn’s treatment- safe blood, blood that would save her. I resisted the urge to take the earrings off and stuff them into the bottom of my bag. I wondered what blood was running through her veins as we rode the elevator to the oncology clinic.
It took an hour and a half to get the bloodwork results back, and when the doctor came in to tell us that her labs looked completely unremarkable, my body fell in on itself. I tilted forward on the rolling stool and let my face press into the cracking vinyl of the exam table. I rebreathed the warm air that my slow, deep breaths sent back into my face. Everyone laughed— Carolyn, the doctor, the social worker, the nurse. The bubble of tension that had filled the room since we arrived popped.
I signed some forms and we made a follow-up appointment for December. We stopped for milkshakes on the way home and made a plan for dinner before I took Jack to longswording and jumped on a workshop from the car. It was a relief to be moving through the ordinary motions of our life, but my stomach stayed knotted and my appetite has disappeared in the days since.
Last week in Carolyn’s health class, each kid was randomly assigned a skin condition to research and present on. Carolyn pulled a notecard from the fan in her teacher’s hand, saw that it said ‘melanoma,’ and said aloud, ah! deja vu!
I don’t begrudge her her dark humor— it’s my gift to her, one that she runs with at every opportunity. It’s her way of coping with her traumas, and as coping mechanisms go, I think dark humor is a mild route to take. But I won’t pretend that sometimes laughing about her cancer is hard for me. I force a smile, and I tuck the shadowed part of myself behind my heart and ache for what she’s endured. A part of me worries that by joking about it we’re somehow tempting fate, as if we could open a door into our lives and inviting this seething, hulking monster back in.
I don’t want to live in fear, but I am afraid. Cancer scares me. The possibility of one day losing my child scares me. It’s an aftertaste in my mouth I can’t ever spit out.
I bet you were never so happy to hear the words “unremarkable” in your life!!! I hope your week has calmed down since then. Be well…all of you.