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February 15, 2018
“This is it? Where’s the entourage?” I joke as the doctor moves past me to his chair in the corner, trailed only by the nurse practitioner and research coordinator today. The cramped room, normally packed with interns and fellows, all eager to examine my husband’s betraying body, seems strangely vacant even though there are still five of us for today’s checkup.
The joke goes unacknowledged.
“A number of people have died on your arm of the trial,” the doctor dives in, “most were frail, old; probably dying due to high toxicity in the body. I would’ve have allowed them to participate, but it’s a national trial and I don’t have much oversight. So, in any event, your arm of the trial as been suspended pending further review”.
I feel the blood drain from my face and then heat creeping up my neck; I grip the seat of the chair with my arm locked at my side, a reflex to keep myself from falling. I try to listen to the words he’s saying as he continues, but I only hear the word “died” on repeat in my head. I try to focus on the doctor. I remind myself that my husband is healthy, alive, sitting next to me.
I take a breath.
“How many people died, exactly?” I ask, hoping I seem unaffected.
“Around six or so, out of four hundred”, he says.
“And how many of them were old and frail, in their eighties, as you said?”
“I can’t say for certain”, he responds, crossing his leg, left ankle atop his right knee. He wears a pin in the shape of a heart with the letter M on his lapel. I focus on this as he speaks, “and this was all in the first twelve weeks of dosing.”
“So, to clarify, none of them after the initial twelve weeks?” I press him, wanting to know if my husband is at risk.
“Again, I can’t say for certain, but I think most of them did. We’ll know more after the review in six weeks, at which point we’ll let you know if the trial will continue or if we’re done,” he uncrosses his legs and sits a little straighter, pointing his body toward the door.
I glance at my husband, seated by my side, a buffer between the doctor and me. He has not spoken. My silence is his cue.
“So, I might be done with the trial in November? And then what happens?” he speaks, shaking off the surprise, stepping into his proactive patient role.
“Then that’s it, you’re done,” the doctor says, opening his hands. Ta-da!
Just moments before, I think to myself, we were scribbling notes about TSH levels, waiting for blood work results, thinking my husband’s high TSH levels were indicative of a pituitary gland side effect. We were worried about the wrong side effect.
We recap the news but it is clear that there is little else to discuss at this point. The doctor rises, shakes my husband’s hand, then mine.
“See you in six weeks,” he says as he strides out of the small room.
Some chit chat ensues, some tying up of loose ends. The nurse practitioner mentions a waiver she’ll provide for my husband for work, the research coordinator tells us to follow up tomorrow for the blood work results. All light and fluffy comments: have a great week! and see you soon!
We walk out of the cancer center at Georgetown and into the autumn sunlight, handing off our valet stub and waiting for our car’s return. I rest my purse on a cement pylon and lean into it, supporting the weight of the news. The breeze blows the first of the fall leaves across the circle drive and the scent of crisp leaves mingles with freshly-laid asphalt–a strange combination. I watch as college co-eds traverse the parking lot in groups, excited chatter, their enthusiasm written on their faces. An odd juxtaposition, these young students, entering and exiting the cancer center. I feel our life changing again, I feel us entering another state of flux, and I watch book bags full of knowledge bounce in front of me on the backs of students whose biggest challenge is a paper, an exam, an unrequited love. I watch them jealously, longingly.
“How are you doing?” my husband asks, leaning into my sight line and trying to make eye contact.
“How are you doing?” I volley back, wondering which part of this news hit him the most.
He shrugs as the car pulls up, scattering the co-eds, and we are back in motion.
“It’s just ironic,” he throws over his shoulder before he slides into the driver’s seat.
I remember a few hours ago, lunch on the other side of the Potomac, sitting across from my husband at an overpriced by lovely restaurant in the heart of our town–our favorite. I sip my latte and listen as he explains all of his career options and possible moves come the end of his clinical trial in May. I gaze out the window as the city bustles with lunchtime traffic, taking another sip. He continues exploring every option, every possibility. I pepper him with questions. The waitress delivers our lunch but he doesn’t slow down–too much to consider. I see a nanny walk in front of the window, talking on her iphone while pushing a stroller that cradles a sleeping toddler.
He pauses a moment to take a bite, then looks up and asks, “so, what would you like to happen?”
I consider the question as I cup my latte with both hands, trying to warm my chilled body with the hot ceramic mug. I am not ready for the cool weather.
“I’d like to not move for a little while,” I smile at him. I remember the four different homes in less than eighteen months, then shrug, “but I don’t know how much control we really have once the Air Force decides to put you somewhere after the trial.” I look again out the window, the tree-lined street hinting at the change of season with a few stray leaves, the busy pedestrians in long sleeves. The sky is a crisp blue, and despite the changing season, the sun still warm.
“I love this city, and I’d like to stay for a number of reasons; our family and friends are here,” I pause a moment, flashing back to the backyard party we threw a few weekends ago, a crowd full of faces who love my husband all gathered under a dark mid-September night sky, smiles lit up by patio lights and candles, raising their glasses to toast to his health. Knowing true friendship—one of the best side effects of cancer, I think to myself, then continue. “I’d like to know where our kids will go to school, I’d like to not pack up our stuff again, but namely, I’d like you to have continuity of care. Doesn’t that count for something? Can’t we be to stay here for a while based on that alone?”, I ask, hopeful.
“Well, in theory,” he leans back in his chair, his turn to contemplate the city just beyond the window, “but at least we have until May to figure it out and weigh all of our options”, he finishes his last bite and then picks up his coffee. “It is a great town,” he adds with a twinkle in his eye.
We are driving home again on this all-too-familiar route. “I stay in the left lane, right?” my husband asks as we leave Georgetown, crossing the Key Bridge. I nod but the question is rhetorical, he knows this part of town all too well. He is preoccupied by the news, distressed about what this means for our “plans”. I am preoccupied with six deaths. Always back to dying. The familiar sense of the unknown settles between us. Our life, only a few hours ago, was headed in a certain direction. We had options, we had time. And now on the drive home, it’s all up in the air–again.
Now it is morning, and again I clutch my warm mug and wrap my sweater tighter around me as I try to shake off the morning cold. My son brings me a credit-card sized brochure that he’s pulled out of his daddy’s wallet–he is always leaving it within their reach.
“Look, mommy! My favorite book!” He flashes the small packet and it registers as something important. I ask him for it, and his small hand presses it into mine. He watches me for a second, then decides to read another favorite book. I open it up: a credit card-sized quick-reference for my husband listing all of the possible side effects of his treatment.
All the information anyone would ever need, all in this tiny little brochure. And yet, even now, I am still unprepared for the side effects.