Tag Archives: clinical trial

Into the Sun: Santiago Part III

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I wake up and, for a moment, forget that my husband is sick and thousands of miles away from me. For a moment, that split second between asleep and awake, it feels like a normal day.

It’s nice, that split second.

A phone call from my husband – “they’re keeping me here” – and the day turns into an obsessively-referenced check-list. Flight is booked, cell phone plan changed to include international capabilities. Lists of emergency contacts compiled and distributed. Neighbors alerted.

“Why do you have to go get daddy?” my oldest asks at lunch.

“To bring him home,” I say, a weak smile on my face. And I silently will it to happen.

I put them down for their nap and tell them I’ll see them soon, hoping they accept the relative term. They do, and soon slumber peacefully a floor above me, unfazed by the contingencies and changes and rushing and doing. They will be happily distracted by their grandparents, and they will cry when I come home.

My suitcase is packed – though for a week or a month I just don’t know – and while I bide my time during afternoon naps, waiting for my mother- and father-in-law to arrive from errands and work respectively, I survey our home. The house is filthy. There is, suddenly, so much to do. I dust, I sweep. I clean windowsills. I clean baseboards. How could I not have noticed this filth? I berate myself, I blame myself. I slice bananas, store them in freezer bags and shove them into the freezer. We can’t waste it, I tell myself. As I slice the sixth or seventh one, I think of my husband. Of how far away he is. Of how little I know of what’s happening to him – is he alive? –, right this second, whike slicing bananas for smoothies.

I put the knife down, stow the cutting board, and remember our goodbye at the airport only two days before.

I’m so glad I hugged him like it was the last time. Just in case.

***

My father-in-law drives me to the airport, filling the air with chatter to take our minds off of our unexpected reality. I am grateful, and as I watch the sailboats rock back and forth in the Potomac, I long for summer.

A rushed goodbye, a strong hug. “Take care of my boys,” I tell him, “I’ll take care of yours.”He smiles and within seconds our lives are heading in opposite directions.

***

“You bought a one-way,” she says, a frown on her face, “I can’t let you go, you don’t have a visa.” Her crimson red blazer clashes with her burgundy lipstick.

“Reciprocity,” I tell her, “we have reciprocity with Chile.” I stay calm, I know I am right.

“But that’s only if you buy a round-trip. Not a one way,” she barely looks up. “I’m sorry, I can’t let you check in.”

I take a deep breath. It was too easy, I think. It was all too easy.

“I need to go, and I need to leave tonight. My husband,” my voice breaks and my eyes fill. I am embarrassed, but I can’t stop myself. On autopilot, my body is functioning with only one objective: get to him. I start again:

“My husband is hospitalized in Santiago. I don’t know when he’s coming home. I need to go. I’ll buy a return ticket for whatever day you choose. Please.” I don’t look at the passengers checking in to my right, but I know they are staring. I fumble with my phone while the attendant calls her manager, my tears splashing on the counter. I wipe them away with my sleeve.

After the exchange of a credit card and curt sympathy, she slides me a slip of paper with a number scribbled in blue ink.

“Call this number when you know you’re return flight. They’ll waive your change fee,” she gives a side glance as if to emphasize the discretion I must show. I slide the paper into my pocket.

“Thank you,” I say to her, but she has already moved on the next passenger.

***

The plane climbs steeply into the DC skyline as we lift up and over the Potomac and fly right over the spot that I know they’ll be. I squint and see little dots on the docks, I imagine it’s them. I saw you! I’ll say. I waved! Did you see me?

The dots disappear and we fly straight into the sun, streaks of orange and pink streaming forth, taunting the plane as it chases the sunset.  Pink and orange, their favorite colors.  A sunset for my boys. I make a note to tell them. It was your sunset, I will say.

In Atlanta I have a two hour layover and long walk down a stark, modern corridor to the international terminal. At some point between the bathrooms and my gate, I pass a hanging sculpture – a corn cob with a dragon tail that looks like a giant flying penis. I stop dead in my tracks. I take a picture. I send it to my brothers with a witty hashtag. We have a ball with this picture. I find my gate and a seat. I sit down, and I laugh. I laugh and laugh, uncontrollably, at the absurdity of the sculpture, until I begin to cry. I pretend it’s from laughing so hard at the flying corn penis, but now I cry uncontrollably, just waiting.

I cry for him, and I cry for me.

What’s next? I think.

What’s next?

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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.

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