Monthly Archives: September 2013

Side Effects

“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.

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Counting Buoys

I rinse the shampoo out of my hair and feel the salt water, the ocean breeze, the warm sand, slipping away with it. Our summer vacation is over and our life is as it was before–fast, intentional, focused. As I let the warm water wash over me, allowing life to move forward even though I wish my spirit to remain in the waves, I remember our wine-induced conversation the last night of our vacation. We sit on the dimly lit front porch, screened-in but, after years of use, the screens have rolled away from their frames, inviting small, unwanted guests to our party of two. My husband sits across the glass table from me, reclined in a well worn patio seat, red wine in hand. He’s had too much to drink, and so have I. In his white shirt, his linen pants, he looks the part, and wears it well.

The question fell from my lips before I could stop it, encouraged by too much alcohol and too little inhibition. This vacation, so blissfully free of cancer, is about to take a turn.

“Do you think it’ll come back?” I cringe but it’s too late, the words are spoken and hang in the air between us. I pray for an ocean breeze to sweep them away but the pines are too thick. He has to answer.

Reflecting, looking into his glass, one hand behind his head while the other swirls the red liquid; he looks happy. A week of playing in the surf, laughing, half-naked babies and beach breeze-induced sleep agrees with him. He takes a swallow, leaving the tiniest bit left in his glass, then clears his throat.

“I hope it doesn’t,” he starts, softly. “But, if it does, I’m not so sure I want to know about it.” He’s confident now, sitting up a bit more. “If it comes back, it’ll come back somewhere bad, and it’ll probably be stage IV. And then I’d have to find a treatment that would give me maybe five years to live instead of four, or something like that. So, what’s that they say? ‘Ignorance is bliss’? I just want to live a happy life. I don’t want to know.”

He finishes the rest of the glass and gives me a half-smile, pleased with his answer. And I am silent only because I know whatever I say next will be potent. I want to shake him, to scream “What about US? Don’t you want to know for us?”

Instead I feign a lighthearted laugh and say, “Well, of course you’ll find out, you’re on a trial. And that’s what they do, they monitor you.” I take a sip and then I add, “and by the way, if it comes back, we’ll get rid of it, just like the first time”. Somehow, the words didn’t come out as convincingly as I’d hoped.

I finish my glass and we are enveloped in silence. Not the awkward kind; the reflective kind. I am learning about him, still. And I understand him. I think back to the last few days on the beach. The secluded beach town, exceptional only in its unexceptional nature. Victorian homes from the 1920s, virtually vacant beaches, low tide stretching out for hundreds of yards, warm water lapping at baby toes. The perfect getaway for a family needing to get away.

We arrive on Monday afternoon and begin to unload the car and explore the beach house. It is old, but functional, a little musty, with mismatched furniture and a large front porch. It needs love, but it is footsteps from the ocean and expansive enough for two sets of tiny feet to run without impediments, and as those tiny sets of feet explore every nook and cranny, my husband wraps me in his arms and says, “I’m sorry, I thought it would be nicer.” I shrug him off–it’ll be great!–, and then search for cleaning products.

We fill our days with hermit crab and sea shell hunts, wave-jumping and rock climbing. I coax my baby into the sand but the first day he is wary of this new frontier, content to shovel sand from the edge of the more familiar feel of a blanket. My toddler jumps and splashes and runs in the water, never coming out unless to say he’s hungry. Our beach time is punctuated with naps and meals, and under the warm, late August sun, with the cool ocean breeze sweeping away all of our real-life troubles, we have found a haven.

I look at my husband across the table, lost in thought, far away. I reprimand myself for having brought up the ghost that we finally buried on this trip. Instead of apologizing, I say “Why are we even talking about this? Let’s move on. More wine?” But he declines and I decline and we decide sleep seems a better option. The seamless perfection of this week at the beach punctuated by the reality of what awaits us back in our real life.

As I reach for the soap and scrub the sand and sea salt off my skin in the shower of our city townhouse, I remember my baby just hours ago, our last jaunt on the beach. We grab our suits and race to beach an hour before check out to squeeze in one more ounce of summer. This time, our baby is ready for the sand and the water. Brave now, he holds his father’s hand as he wades out into the sea, giggling under his baseball hat, squealing when the waves reach his belly. My toddler counts buoys, then begs me to “be a mermaid”, so I dive under the shallow water and swim up to him, listening to my boys squeal with delight. My husband reaches down, grabs hold of our baby and tosses him in the air, then dunks him back in the water. We are the only ones on the beach, on the planet. We are in the middle of an ocean, and we are all we need. The words spoken last night have drifted out with the tide and we purge ourselves of the things we said with each dip in the ocean, each shallow dive. As I swim toward my screeching boys, holding a look of equal parts fear and exhilaration as they wait for me to surface, I leave, for these last few moments, all of our real life behind. Right now we are just bodies buoyed by the salt of the ocean; reflections in the water changing with the circling sun. We are imperfect, flawed, loving, adapting creatures that move with the tide.

The laughter rises up from my family and I feel the breeze at my back. I wish for the breeze to carry that laughter back to our real life, to remind me of the buoyancy, the light, the laughter we found at this exceptionally unexceptional beach. I hope that this laughing breeze can find me when I feel our life about to change–again.

I turn off the shower and bring the towel to my face. The beach is gone from my body, I’ve erased all signs of it. But in my soul, and in a forlorn beach house not far away, I know there exists a world where my husband is free, where burden is buoyed.

I will not forget that place.

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