Category Archives: Clinical trial

The Million Dollar Man

“Right this way,” she says, holding her ipad in one hand and clutching her the zippered hoodie in the other.  Today it is a different nurse that ushers us down a different hallway.  We dutifully follow, but I glance to my right at the hallway we usually walk, the scale my husband usually steps on to read his weight, wondering if I should ask her if she’s sure about this route since our room, the room we’ve occupied for every appointment we’ve had since the start of this clinical trial, is not at the end of this hallway.  Instead, we are escorted to a different room, across from the bathroom, in the back of the cancer center.  The new nurse takes vitals, notes them in her hospital-issued ipad, and moves swiftly to the door.  With her hand on the door knob, she turns to my husband.  She nods her head toward the robe she’s left on the exam table.  “I know you don’t usually do this,” she tells him, “but the doctor would like you to wear this today.”

We exchange a glance as he grabs the gown, but he casually and cheerfully answers with an “okay”.

“This is new,” he says to me as he unbuttons his shirt and then loosens his belt, not looking up.  The new room is warm and uncomfortable, and I can’t stop thinking about the bathroom across the hall.  I shed my coat and wait nervously.  The change in venue, the new nurse, the removal of clothes, the uncomfortably warm wait has made me doubt today’s appointment.  An unsettling energy settles between us, filling the space between he, on the exam table in a thin, scratchy robe, and me, perched on an office chair, legs crossed and leaning into the contents of my phone.  Trying to make myself small. I check my phone, distract myself by updating my email and scanning facebook.  My hands are sweating.  Perhaps this is where they issue bad news.  Perhaps the reason for the different nurse and different room is because we will receive different information today.  My husband’s body is different, his scan results are different.

We wait.

Finally, the clinical trial nurse enters and begins her usual process of examining his entire body.   This time, she asks about our kids, asking to see pictures.  No one has ever asked us about our kids before, I think, filing the comment away along with all the other suspicious behavior today.

She finishes her exam of my husband, who now lays on his back, looking up at the ceiling and listening from a horizontal position.  She asks to see a picture of the boys again, tells us the doctor will be in shortly, reminds my husband that he can sit up, and heads for the door.

“Do you have the scan results?” I ask her before she can leave.

“Oh, I haven’t checked them yet,” she replies nonchalantly, “but the doctor will talk to you about them in a minute.  Wow, it’s so hot in here!”

Again, we wait in the overheated room, the fear of the news filling the gaping silence between us.  The doctor enters, followed only by the nurse we’d just seen, and the clinical trial research assistant.  No interns, no fellows.

The doctor gives my husband a hug, a first from our usually “all business” formalities that signals in me that something is wrong; he is preparing us for bad news.  I feel my senses become heightened, I feel the room get bigger and then smaller, my brain get fuzzy and then refocus, as I wait for the shoe to drop.

“Scans are clear,” he starts, standing in the corner of the room, leaning on the sink.  “There’s an enlarged lymph node but only slightly enlarged, so we’re not worried.  And the trial should resume within a few weeks, so we’ll let you know when it gets on its way and then get you back in for your infusion.”

Confused, I look at my husband.  The new room, the new nurse, the request to undress, the doctor’s hug…none of it mattered.  My husband is smiling and relieved and I let myself relax and settle into the chair.  We discuss the trial, my husband asks about continuing to receive treatment, if the doctor thinks we should quit while we’re ahead.  The doctor, initially jovial, surprises us with his curt answer.

“I see no reason for you to leave the trial now, you’ve reacted favorably to the treatment.  Plus,” he adds, irritation edging his words, “you’re getting one hundred thousand dollars of medicine with every dose on this trial, so I don’t know why you’d walk away from that.”

My husband smirks at this an hour later while we sit in the Georgetown Hospital Starbucks with a celebratory latte and tea, surrounded by students.  The girl on my right writes for a few seconds, then looks beyond my husband and I through the glass and out into the hallway.  She seems to be searching for something.  She is oblivious to us.

“I flew F-16s, doc, I’m already a million dollar man,” he smiles over his latte, feigning the debonaire of cocky pilot.  But he’s right.  The doctor’s futile attempt to keep us on the trial simply because it’s “paid for” didn’t impress him in the least.  He’s used to being given high-priced items; and those always come at a cost.  Learn to fly a jet, but then you must go to war.  You must fight for your country, you must put yourself in harm’s way.  You must obey.

Take this million dollar drug for the clinical trial.  Stay alive, hopefully, a little longer than those who came before you.  Try not to get too sick, although you may, we just don’t know.  That’s why it’s a trial.

Suddenly a memory creeps into my mind as I lift the lid on my tea and allow some steam to escape in curls: it’s a sunny September day and I have driven to a friend’s house to pick something up.  She asks about my husband, about his health, and asks more than most.  She asks me how it happened, had he ever had any cancer before this?

Yes, I answer, he had a mole.  A big, ugly, black mole that changed shape and color.  I remember lying by his side under the shade of a rented cabana while the hot sun warmed the white portuguese sand.  He rolled onto his stomach to change position during his afternoon nap. And his mole, always dark and large, was now black and raised and changing shape.

“Oh my god,” I say, raising myself up on to my elbows and doing little to mask my concern.  Holding my bikini top to my chest and removing my sunglasses, I lean in for a better look.  “You need to see a doctor as soon as we get home.”

He grunts and tries to find it with his right hand, but it’s just out of reach, and just out of sight, in a place that no one would ever see it, except his girlfriend, when he’s in a bathing suit, lying on the beach on his belly under a tarp on the southern coast of Portugal, taking a nap.

My friend looks at me as I shake the memory and says, “are you going to sue the first doctor, the one who removed the mole and said he got it all?”

The million dollar question.

“I’ve thought about it,” I answer, scanning the room–musical instruments lining the walls, a musician’s dream–and I avoid her eyes.  We were so assured, so confident back then in Arizona.  “It’s a 1-A,” the doctor waves it off.  We trusted this doctor, the one with whom we’d built a relationship, the one who even let me stand next to him to oversee as he gouged out pieces of my husband’s body.  He was an Air Force vet, he was smart, he couldn’t have made a mistake.

Right?

“It might be worth considering again,” my friend says, her green eyes searing into mine as she lightly holds her barely-pregnant belly, her brutal honesty about to hit me in the face, “you might need that money someday.”

I might need it someday–if he gets sick again, if the Air Force decides to medically retire him, if Congress continues to strip vets of their earned retirement.  I might need it someday if he dies.  Which one of these did she mean?  I don’t stop to think it over.

Students buzz in and out of Starbucks with their books, their college careers on their minds.  And as my husband finishes up his latte and stands to leave, someone writes a message on the giant chalkboard wall behind him: Good luck, Sam!

Yes, good luck, Sam, I think.  Because one day, when kisses are still new and electric, you are napping on a beach in the Algarve, dreaming of your next sea-breeze accompanied meal, planning your future from an extended-stay hotel, drinking Portuguese wine and eating chocolates from 14 stories high, listening to the sea pound the shore, naming nonexistent babies and buying pretend real estate, dreaming of your future together.  And then, Sam, your future actually shows up, whether you’re ready or not.

Good luck, whoever you are, you’ll need it.

Tagged , , , , , , , , , ,

Missing the Life

The table is set, and our maid is furiously working in the kitchen to finalize the Thanksgiving prep.  Through the embassy my husband secured a turkey, though I told him it was an exception made only for our guests.  I close the glass french doors to the balcony; the sun streaming in on this hot summer day in November is inhospitable and I turn on the air conditioning unit located above our dining room table.  I light the candles, all shades of fall and markedly out of place on this summer day in Buenos Aires, but it is Thanksgiving, and I aim to give our argentine guests an authentic taste of the holiday. I check the time–they will be here soon.

After two bottles of wine and a sampling of everything from the turkey to the stuffing to the pumpkin pie, our argentine guests are laughing and playing with the baby on the floor while our toddler sidles up to their teenage son, curious about the smartphone he holds.  The argentine general reaches for the baby and brings him to his lap, cooing and beaming, wishing aloud for a grand baby of his own.

His wife leans toward me.  “Look at this,” she says with a loving smile, “he can’t keep his hands off babies.” She links her arm through mine and launches into a story, one of many she keeps handy, about her husband and his weakness for kids.

She heads toward the kitchen before they go to thank our maid for her efforts and delicious cooking, and just before they exit our apartment and slide into the elevator, doles out the biggest of hugs.

“Thank you,” she looks me square in the eye, “this has been the most lovely experience we’ve ever had.  Thank you for showing us this tradition of family and love.”

“Just a typical Thanksgiving full of screaming kids and too much to drink!” I laugh and blow her a kiss as the elevator closes and we hear them descend, knowing this is my last scene of the day.  The boys, napping, and the maid cleaning up–the perks of diplomatic life–allow my husband and I a moment alone.

“Do you think they suspected anything?” I ask him as we sit in the living room, overlooking the park four stories below, alive with argentines and their beloved dogs in the summer sun, while the remnants of the meal lay scattered about the dining room table, awaiting their second showing.

“I don’t think so,” he leans back in his chair, a fresh glass of wine in hand, wistful.

 

I remember the toast he gave as he started off the meal, awkwardly attempting to explain Thanksgiving to our guests, the argentine general and his wife and son, and ending with a toast to those things for which we are thankful.  His eyes stall on me as he expresses his gratitude for his family, and I know he is remembering our visit to Hospital Aleman yesterday, the news, the waiting room, crowded, solemn.  Remembering the follow up trip to Starbucks as we digested the information: cancer in the lymph node, at least one, possibly more.  A follow up with the surgical team scheduled.  A breakdown in the back of the coffee shop, a fellow patron staring while desperately trying to seem uninterested, a second trip to the napkin holders to dry my unyielding tears.  He stops mid-sentence during his monologue, trying to compose himself, finishing the toast with strength and poise.  I glance at our guests, managing a weak smile.  I hold my breath, and they do not notice.  But if they look closely, I’m sure they’ll see his cancer all over my face.

***

It’s a date I always remember.  The birthday of my high school best friend; I remember the year I made her a cake and she told me it was her favorite gift.  No matter the year, no matter that the depth of our friendship has dramatically changed, I always remember.

This year, however, I remember differently.

Driving in the car with my husband, the boys in the backseat, we are on our way to dinner, to the home of friends who now live in DC but once lived with us in Buenos Aires.  It’s dark, even though it’s early.  I glance at my iphone before heading inside and notice the date: November 23.  But tonight, I don’t remember my high school friend and her inclination for fast, tight hugs and high pitched squeals.  Tonight I remember November 23 one year ago, in the dermatologist’s office in Buenos Aires.  A seemingly ordinary Wednesday.  Waiting in a crowded room with other patients, all looking just as anxious, as I resist the urge to vomit in the nearby bathroom.  It will be a false alarm, I tell myself.  We are called by the doctor into her office, separated from the waiting room by paper thin walls.  I feel the eyes of all the other patients burning into my back as we wait, holding our breath.

It’s cancer, she says.

An hour later we are seated at the Starbucks across from Hospital Aleman in downtown Buenos Aires, trying to make sense of the spanish phrases, make sure we understood, make sure there was no possible way that my interpretation was wrong.  An hour after that, I am home in our downtown apartment, in the arms of our maid, crying in the kitchen.  Having lost her husband to cancer five years earlier, she is all too familiar with my fears.

“Have faith,” she says, looking at me through sad brown eyes, before escaping into the laundry room.

“Should I cancel Thanksgiving?” I ask my husband as I pick up the toys scattered in the living room, moving books back to their shelves, righting pillows, folding blankets, trying to put my life back together.

“No,” he says without missing a beat, “why would we do that?  Besides, everything’s ready.  And it’ll be fun.”

But neither of us are convinced.

***

Our friend’s home is a treasure trove of reminders of their life in Argentina–wild game hung from the wall, antique maps framed in the entryway, cow-hide rugs warming the dark wood floors.  The welcome is warm and the kids whirl themselves into a frenzy of toys and games of chase as the adults take turns watching and drinking and holding the baby.  While our hostess busies herself in the kitchen, I settle in with an argentine red and her birthday gift, a picture book of their time as a family in Argentina–a highlight reel of their adventures, their travel, their once-in-a-lifetime memories made.  And as I look at them, posed in front of glaciers, standing at the Chile/Argentine border, drinking Malbecs at estancias, riding argentine horses, I feel something I haven’t in a while: longing, an ache, and the sting of envy.  I see in this book what our life should have looked like.  I see the memories we should have made.  I close the book.

On our way home, I ask my husband if he remembers which day he was diagnosed.  It’s  not a fair question; I know it was a year ago today.  And I can’t decide if he is truthful when he replies that he’s not really sure.  We are both playing chicken, seeing who will blink first.

“I miss Argentina,” I say after he reveals nothing, “I buried it somewhere down deep, and tonight it all came up to the surface.”

A phone call to our dermatologist friend, a Thanksgiving meal, and three days later, our life in Argentina is over after only six months.

“I know,” he says with a side glance as he turns on his blinker and slows at the light, one more turn before we’re at our DC townhouse.  “Did you see their book?  I can’t believe all the things we’ve missed.”

***

The boys sleepily fill up on Thanksgiving leftovers for lunch–a full day of romping with cousins and friends has left them utterly exhausted.  My husband steps into our galley kitchen but I intercept him with a tight squeeze and he doesn’t let go, burying himself in my shoulder.  This morning his rash was back–my pits are the pits!, he puns–and this afternoon his leg has swollen.  The cancer is gone, yet somehow it lingers, always lingers.  We sway back and forth to music only we hear, and I catch our oldest son staring at us over his sandwich.  I wink at him, toss him a smile.

He stares silently for a few seconds, elbows resting on the rustic dining table that he’s covered with stains, then drops his sandwich, a smile spreading across his rosy cheeks.  “You guys look like you’re married!” he proclaims, pointing out our embrace, getting his sidekick to look our way, his face covered in jelly.

We laugh but my husband still doesn’t let go.  My toddler, growing up, already learning what love looks like.

“Well that’s good, because we are!” I laugh, and breathe in the scene–two beautiful towheaded boys, a warm, sunlit home, the boys’ artwork taped to every available wall.  They have lost interest in us and begin shouting at each other, each one mimicking the other with growing volume until they end the game in a fit of giggles.

I am still wrapped in the embrace of the man I married only four years ago, and from this vantage point it’s pretty clear:  we actually haven’t missed a thing.

 

 

 

 

 

Tagged , , , , , , , ,

A Thousand Paper Cranes

The rain falls sporadically in large drops on formal wear and the wind theatrically blows small yellow leaves through the courtyard of the textile museum as we watch the couple in front of us–she in flowing ivory, he in a crisp suit–read their vows. Occasionally she sneaks a glance at the looming clouds, wondering whether they will merely threaten or unleash atop her unprepared guests. My husband, on my left, holds my hand and traces the ridges of my knuckles with his thumb, then plays with my engagement ring. I know he is remembering us.

Moments earlier, an unconventional reading takes place, one chosen from Story Corp. It is an interview between a wife and her husband battling an aggressive form of cancer. At the mention of the word I immediately become nauseated. Keep it together, I tell myself, not now. I move my eyes from the two gifted story tellers at the microphone to the small white pebbles forming the aisle to my right, trying to focus on them instead of the emotionally driven story coursing its way through the microphone and into the crowd. My husband clears his throat, shifts subtly in his seat. My right hand clenches my purse while my left, still wrapped safely in his, remains composed. Amazing, I think, that my subconscious will throw all my anxiety and fear into the right side of my body–the solitary part–, allowing my husband to believe I am, at least outwardly, unaffected. When the reading is over, I notice I am sweating despite the rapid drop in temperature and cool fall breeze. A deep breath. It’s over.

The couple before us beams at each other as they are pronounced husband and wife, and the crowd collectively beams back. We stand and applaud at the union we’ve just witnessed, iphones poised for the perfect shot. As they exit the ceremony by way of the pebbled garden path, a breeze blows her dress and it billows softly, perfectly, before she is lifted into the air by her new husband. I know she feels weightless in his arms, buoyed by love and the feeling that the world, for this moment, has stopped spinning–just for them.

After a brisk cocktail hour beneath a setting November sun and a canopy of old elm trees, we are ushered into an intimate tent adorned with soft lights, a small dance floor and the cozy feel of family. After several glasses of wine, the couple seated beside us are our new best friends, and the wife my unwitting confidant. The bride graces us with her presence and we swoon, adoring her dress, the wedding, the music. She graciously fawns over us, telling us what amazing women we are, how she knew we’d hit it off. Then, to me, she says, “I am so happy you live here!”, and for a second–a split second–I have forgotten the life-changing event that brought us back to DC.  “Me too!” I smile back, grabbing her hands in mine. And for that split second I mean it, not because it’s a great place to be if we can’t be in Buenos Aires, not because it’s a great place to receive cancer treatments, but because it’s a place full of people we love. It’s a place brimming with friends we have yet to meet. For a split second, it is simply a wonderful place to live.

But as she leaves, beckoned by the neighboring table, she steals the excitement, and I feel the sincerity draining out of me. I return to my seat, reach for the champagne. I remember now. I turn to my new friend, and her soft brown eyes seem so trustworthy that suddenly I am blurting out our dirty little secret.

“My husband was diagnosed with cancer last year, that’s why we’re here. That’s why we’re back in DC and not in Argentina.”

She looks at me without blinking. It seems as though she’s stopped breathing.  And just as suddenly as my outburst, the DJ speaks.

“Will the happy couple please come to the dance floor for their first dance?”

The intimate crowd cheers and applauds, encouraging the newlyweds. My new friend continues to stare, and though I shift my gaze back and forth from the dance floor to her, “look,” my eyes say, “this is what we’re doing now, we’re watching them,” she doesn’t break her gaze. Finally, she begins to nod slowly, then turns her face toward the dance, toward happiness. With her back to me, I chastise myself for my impulsiveness. I question my sanity. I have another drink. The bride is ethereal as she dances with her husband, the first dance of their married life. He accompanies her as every groom should, like the luckiest man on earth, happy to simply bask in the warmth of her smile. A lift straight out of the movies has the crowd emoting and clapping, her dress swirling around and around–a photographer’s dream shot. The iphones come out, blocking the view. The dance is over and they are breathless and weightless, floating back to their table, lost in the crowd.

My new friend turns back to me. “I’m so sorry,” I stammer, “I had no business doing that to you. You didn’t need to know that,” though I know it can never be unsaid. I feel my husband at my back but don’t turn around; I’ve betrayed him, his secret. Tonight, seated among strangers, he was healthy. No one knew. No one needed to.

“I work with survivors of trauma,” she starts, “I understand your need to share your story. Trust me, you are not the first person to say something like that.” Her words fight against the eighties music montage thumping against the dance floor. I smile at her, wondering how to get out of the conversation that I began, and scan the crowd, hoping to find a way out. My eyes catch on the hanging mobile over the dance floor–a thousand origami paper cranes. All different colors, they twirl softly in the whisps of night air that manage to crash the party. A nod to the groom’s Chinese heritage, the cranes swaying over the dancing wedding guests symbolize good fortune, happiness and prosperity, a proper wedding wish. But Japanese culture celebrates the legend of senbazuru, where folding a thousand paper cranes grants one recovery from an illness and a lifetime of health. Though I doubt the bride included the cranes for us, I can’t help but hope someone is wishing for my husband’s lifetime of health.

A familiar song comes on. “Let’s go!” I rise and the guests at our table follow my lead, and we dance in a circle around the newlyweds under the promise of a thousand paper cranes.

A few hours later, the couple dashes out of the textile museum’s front steps through a sparkling send off on to their next destination. They leave in a bubble of joy and pleasure and we bask in their wake as they climb into their getaway car. Once they’re gone, our sparklers fizzle out and the guests hold nothing but metal sticks. We throw them into ash trays, say our goodbyes, and my husband and I depart for home. My new friend waves goodbye and promises we’ll see them again soon. And in spite of my penchant for over-sharing, I believe her.

In bed that night, my body still drowning in champagne, my husband holds me. He pushes a piece of hair from my forehead, then leans down to kiss me. “Do you think they know what those vows meant?” he asks as he settles back against his pillows, covering us both up with the warm comforter.

“The only thing that matters is us,” I hear them both say, staring into each others eyes and forgetting their guests, and I am amazed that they have both written the same line in their vows. And I am equally amazed by the accuracy of the sentence, especially coming from a couple on the precipice of their union.  They already have marriage all figured out.

“No,” I answer my husband, “I don’t think they know what their vows actually mean. But,” I tilt my face up to his, “neither did we.”

My mind slips back to a few evenings before, where my husband, afraid for so long, finally let go.

“I read that email, did you read it?” he asks me in the basement where we spend our evenings side by side on the couch once the boys are in bed. I know immediately he is referring to the email from a friend who emailed with research about the longest study of Ipi. An optimistic note, an email to show that his drug has been shown to prolong life–prolong life–for ten years.

“No,” I answer, looking anywhere but his face, “I just couldn’t.”

“Well, I did, and it scared the shit out of me,” he drops his head so I can’t see his tears, but his voice catches and his body, so strong for so long, yields to the fear he has buried deep down. I wrap him in my arms, trying to protect him from studies with ten to fifteen years of life extension as their probable outcomes. I cushion his weight and he drapes himself over me, his head buried deep in my shoulder, his hands gripping my back in anguish, in fear. It’s not enough. Ten years, fifteen years, twenty years, it will not be enough.

A lifetime. Great grand babies. One hundred years. Maybe that would be enough.

No, I think, our vows did not prepare me for this.

The champagne is manifesting now in thirst and the beginnings of a headache. I reach over my husband to the nightstand for a sip of water. I settle back in by his side, remembering the cranes dangling like a wish over the wedded couple. As I curl myself up into him, just under his arm, one leg draped over his, I hope they never know the full weight of their wedding vows. I close my eyes and feel sleep wash over me, slowly drowning wedding vows and breakdowns and the need to share my traumatic secrets. And right before the last wave of sleep covers me completely, I wish for them a lifetime of health.

And one thousand cranes.

Tagged , , , , ,

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.

Tagged , , , , , ,

The first dose: A whole lot of gray

This story actually begins long before today.  To get technical, it began back in 2008.  But the story got juicy a few months ago when our baby kicked my husband’s groin and alerted him to the tumor.  And now, after months of sleepless nights, thousands of tears shed on pillowcases, a lymph node dissection, a skin infection at the incision site and an international move, we are here at the Georgetown Hospital infusion center where my husband will begin his first of 8 possible treatments for a clinical trial.  He was randomized to receive the high dose of Ipi, an FDA approved immunotherapy treatment for stage IV melanoma patients.  My husband, having been diagnosed as having stage III melanoma, will participate in this trial hoping to verify the effectiveness of Ipi as a preventative drug.  Hoping to ward off stage IV.

The nurse with the perky ponytail and sideswept bangs tells us the drugs have finally been released from the pharmacy and they will begin the infusion now.  She has, like all good nurses, mastered the art of happy chatter while performing tasks that would make non-medical folks squirm.  She inserts the IV into the port on my husbands right arm, reminds him that his vitals will be automatically taken every 15 minutes by the bright blue monitor attached to his left arm, and then as quickly as she came she is gone.  The shift has changed and a new nurse takes her place.  My husband is not a number, but he is also not the first cancer patient in this hospital, as the swiftness of care indicates.

I sit seemingly calmly next to my husband as he watches a show on his ipod, his head phones in, his feet up, seat reclined.  If I didn’t know better, I’d think we were sitting in our living room on a Sunday afternoon.  But I do know better.  I know that only 2 hours prior I was crying at the hospital’s Starbucks, having read and reread the consent form.  Every fiber of my being told me to stop the train, to tell my husband this was not worth the risk, to pack it up and leave.  My panic rose up from deep within me where it must’ve been buried for weeks.  The surge of panic, emotion, fear, it rose up with force and while my husband ordered two teas I rushed out of the Starbucks and transmitted my panic to my mother via a harried phone call.  “He shouldn’t do this!” I sobbed over the phone, sending my fear thousands of miles away to a small private catholic elementary school where my mother worked.  “I don’t think he should do this.  I think we should leave.  This could kill him,” my tears splashed on the table and I tried in vain to catch them with my worn kleenex.  I glanced inside the Starbucks and saw my husband stash his wallet in the back pocket of his jeans and reach for the two steaming teas.

“Your husband knows what he’s doing.  He’s pragmatic and well-researched.  He would not do this if he didn’t think it his best option.  Now stiff upper lip, he needs you.”

He put the scalding hot teas down on the table and leaned in to take a good look at my tear-stained face.  “What’s the matter?” he asked as I slid my phone into my purse, trying to hide the evidence.

“I’m going to ask you this one more time, and then I promise I won’t ask anymore,” I reply.  “Are you sure this is what you want to do?”  I ask only this small phrase, but hidden behind this phrase are all my fears: the chronic diarrhea, the possibility of lifelong ailments and drugs as a result of the amped-up immune system, the blessing and the curse of this drug.  I hide behind this phrase my darkest fear, the possibility of death, higher in the first 12 weeks of treatment, due to inflammation in the body.   The question is weighted and heavy but he looks me straight in the eye, unafraid and confident:

“I want to do everything possible to make sure this thing doesn’t come back. I want to do everything I can to be there for you, for the boys. Yes, there are risks, but the risks are greater if I don’t act.  I will be monitored here by some of the best melanoma doctors in the country.  I’m in the best place possible.  This is the right thing.”

Exhale.

I smile through my tear-filled eyes, clear my throat and swallow my fears.  He is right, as usual, and although he is the patient, he is also the one leading me through this.  His strength is admirable and unfailing.  A wonder.

I toss my kleenex  into the garbage and smile my best smile.  “Let’s go,” I say and take his hand.  We walk towards the door, walking out of one phase in our lives together and preparing to walk into the next, a place of unknowns and gamechangers and question marks.  A place filled with very little black and white and a whole lot of gray.  But hand in hand, we walk forward, knowing we are in it together.

Four hours later we bid the hospital farewell and hope to make it home before the coming snow storm. Waiting to get our keys from the parking attendant, my husband allows the woman behind us to go first–she seemed confused and bewildered and eager to leave. We feel the temperature dropping by the second and he bounces up and down slightly to warm up. He’s holding his hot green tea in one hand and his file of consent forms in the other. His eyes are bright and they twinkle as he leans in for a kiss, relief and joy spreading from his lips to mine. He is happy that his first dose is over and that he still feels normal. I wait off to the side as he steps up to the window to fetch our keys and I see it: my husband, the man whose problems are smaller than the rest of the world’s, at least in his eyes. The man who allows an older woman to go before him even though he’s just received his first immunotherapy infusion and has been at the hospital for seven hours. The man who hopes it snows so he can take his son sledding in the morning. The man I married, the man I love.

Cancer be damned, this man is living. Every second.

Tagged , , ,
%d bloggers like this: