Monthly Archives: March 2013

The perseverance of peas

The drive back from the hospital is becoming routine, and so redundant that it’s difficult to distinguish between trips. Except for today. Today there are two things that stand out; first, the lack of traffic at 6:15pm on a Tuesday afternoon, which makes the highway drive almost pleasant; we have spring break to thank for that. The second distinguishing factor tonight is the sky. “Look at that,” my husband says, leaning towards me from the driver’s side and pointing out the mass of gorgeously golden, puffy clouds, with rays of sunshine escaping at all angles, sparkling and almost tangible. “Look at how the light filters through the clouds. Wow,” his mind is elsewhere for a half a second, taking him somewhere far away from the rolling concrete, and then suddenly he snaps back to the present. “Hey, writer, describe that!” He teases me as he tosses me a glance and a smile. I roll my eyes, feigning annoyance, but make a mental note of the gorgeous sight, the much needed beauty. The high after so many lows.

I remember yesterday–a lifetime ago–I was making the same drive in reverse, alone, to the hospital where my husband was admitted for the second time in as many weeks for what they presumed to be side effects from the immunotherapy. And as my husband lays in a bed, waiting for two days for someone to tell him something, anything, he tells his story–the story of his body betraying him at every turn. He waits for news, for decisions, for diagnoses, that never come.

While he waits, I drive toward the black hole of a hospital where time is suspended and then lost. Rolling down the road, I notice the daffodils, bright against the freshly fallen snow. They line the streets in bunches–where one was planted last year there are four more in their place. Their yellow faces have fallen and they seem cold and fragile under the weight of the heavy wet snow that has accumulated since the morning. As I drive back to the hospital, wet snow hitting the windshield, I’m irritated. It’s spring, it isn’t supposed to be snowing. I try to remember if my husband had brought his plants in last night. Spring is a time for growth, warmth, for new beginnings. He shouldn’t have to worry while he’s lying in a hospital bed if his kale and sweet pea seeds are warm enough. He shouldn’t be in that hospital bed at all.

I turn left off the exit ramp, checking my mirrors but not seeing. I flash back to last week, the day after my husband returned from the first hospital stay since the treatment started. He and my toddler and father in law are crowded around two large, square planters on the back patio. I am holding our baby in my lap, listening to his coos while swinging on the back porch swing and observing the scene. My baby bounces up and down, singing a song whose words I don’t yet understand. It’s a true spring day–the birds are flitting, the air feels damp and warm against our skin, and the breeze is inviting and rich. A perfect day to plant. A perfect day for life.

My husband and father in law assess the dirt and discuss the lack of potting soil–will this affect the self-watering mechanism of the planter if they forgot to purchase topsoil? Time will tell. The engineer in both of them is ready with pencils, precision, and patience. Gardening has become my husband’s escape, his sanctuary. I surmise that giving life and sustaining life provides him a form of comfort, of healing. I watch as the scene unfolds in front of me: my husband makes small holes in the dirt with the eraser side of the pencil, my father in law hands my toddler a seed, who in turn drops it in the hole. After the work is done, me and my baby applaud the tremendous accomplishment. As they pat the soil down in place, a robin frantically chirps nearby–a warning cry. We are not welcome here, but the robin is too afraid to do more than sing.

“When will the peas and kale be ready, daddy?” my toddler looks up at my husband with earnest curiosity, his long golden hair curling out underneath his baseball hat, lifted by the gentle wind; every word he hears becoming engrained in his mind.

“Soon, buddy, very soon. They just need a little sun, a little water and a little love.” My toddler is satisfied with the answer and grabs his daddy by the hand, ready to head inside.

The image fades as I realize I’m at a stop sign and I can’t remember how I got here. Lost in a memory and now lost in the words of a Lumineers song on the radio. “Keep your head up. My love,” they are singing through the car stereo. And they are singing to me. The tears are too strong for the lump in my throat and I release it all, feeling the pain of it; the searing pain of “in sickness and health”, of snow in spring. I try to remember where I’m going. Hospital, I remind myself, to the hospital.

But what a difference a day makes, I reflect from the passenger side of the car, now nearing the house we call home. When we left the hospital this afternoon and walked into the bright sunshine, the warm air smelled like freedom, the construction workers in the hospital parking lot contrast against the blooming pink cherry blossoms brought us joy. Everything is possible. The sun is out, and yesterday’s snow forgotten. The drive home is normal, and we’re making plans for tomorrow.

We walk through the door of my in laws spacious home and are greeted with sounds of boys. My baby, a moment ago happy in the arms of his grandfather, is now anxious and whining, eager to get into my arms. Our life clicks right back into “play” from the momentary “pause” and we pick up where we left off. Our toddler, wearing his footed pajamas, cowboy hat and boots, comes rushing towards us, shouting so excitedly that we don’t understand him at first. His baba quiets the crowd so his can proceed with his announcement. He tries again:

“Daddy!! The plants are growing!” he squeals, already leading my husband outside . “Let me show you!”

Snow, spring, hospitals or home, what perseveres is life.

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Firefighters versus lymph nodes

I blink and rub the sleep out of my eyes, rolling over onto my pillow. I am alone in bed. I hear the sounds of my boys playing downstairs: squeals of delight over wind-up cars and trains. Sounds of happiness, of life. I check the time: 7:55 on a rainy Tuesday. I feel embarrassed that I’ve slept in while my mother in law tends to the boys but I remind myself that I was up twice last night with my one year old son, trying to quiet him and get him to sleep. It’s as if he senses my worries and internalizes them himself. I roll onto my back and think that perhaps by quieting my mind and spirit my baby will rest. In my groggy mind, this seems an acceptable solution. I stretch my arms overhead, yawning.

Rolling out of bed, my feet hit the carpeted ground and two steps later I’m in the bathroom where I splash icy water on my face. I study my reflection in the mirror as I brush my teeth and I don’t recognize the woman I see: her eyes puffy from bouts of tears, her gray hairs peeking through at her part. She is a stranger. I hear my husband enter the bedroom and then I hear the squeak of the mattress coils. I rinse, drop my toothbrush into the holder and open the bathroom door. He is lying on the unmade bed in his winter coat with his jeans on.

“I have some bad news,” he says.

I feel my stomach tighten as I brace for impact. After all that we’ve been through in the last three months I wonder what he could possibly tell me at this point that we haven’t yet experienced: a cancer diagnosis, the loss of his job, being forced to leave a life and home that we loved in order to receive the best possible cancer treatment. Financial stress, emotional stress, physical stress–what’s next?

“I woke up this morning with some aching and the chills. I have a fever,” he shudders slightly and wraps his coat more tightly around him, “and I found a swollen lymph node,” he absentmindedly taps on his left groin, the only remaining place in his abdomen where they reside. The phrase “lymph node” hits me like a slap in the face. I want to sit down but don’t want to appear affected so I remain standing, hoping to seem strong. We were warned about the fever, possibility of flu-like symptoms when he started the immunotherapy clinical trial last week. But up until now, we’ve been left blissfully alone by the side effects. As if my husband could out run, out smart, out “happy” them.

But a swollen lymph node? The last time a swollen lymph node made an appearance my husband was whisked to the local hospital in Buenos Aires for a needle biopsy, an ultrasound, a PET scan. He was diagnosed with melanoma, and within 7 days we found ourselves on the other side of the hemisphere for an emergency lymph node dissection in DC.

“So, can you drive me to the hospital?” He looks at me from the bed, cuddled up in his coat and blankets, and I just want to lay down with him, wrap my arms around him, make it go away. I tell him I will and hurriedly smooth my dirty hair back into a ponytail but the elastic is no match for the curls and stray hairs. No shower today, I tell myself. I give up on my hair and dress, then exit the bedroom in search of my boys. I find them in the baby’s room, still in their pajamas, blissfully ignorant of the anxiety swirling above their precious heads. They are happy to see me and I cover both little faces with kisses and “I love you’s” before leaving them with their beloved baba. We head downstairs and out the door, another drive to the hospital, another unknown, to start the day.

It’s rainy and gray as we head downtown. We are in prime rush hour and forced to listen to mind-numbing morning radio shows. One of the djs is talking with food in his mouth and then belches on air. I turn it off, disgusted. We’re stopped at a red light and a man with a cardboard sign that reads “Navy Vet, homeless, hungry” starts walking between cars. “Do you think he’s really a vet? And homeless?” I ask my husband. He shrugs and I feel like I should look for some change regardless of his story. But the light turns green and so we roll on towards the hospital. I glance in the rearview mirror as the homeless vet drops his sign onto the wet pavement. He bends to pick it up and then he’s gone, swallowed by the traffic.

My husband starts to chatter away next to me. Anyone else would attribute it to his positive attitude and normally they’d be right. But I know him, and I know this effort to seem light and positive today is a cover. He’s nervous. I hold his hand as I change lanes. “Everything is okay,” I smile at him, giving him a squeeze. “I know,” he repeats, “Everything is okay.” He squeezes my hand right back.

After twelve hours at the hospital, six different doctors and more than a dozen recitations of my husband’s complete medical history, the only thing we can be sure of is that my husband is responding to antibiotics. His fever subsides, his eyes no longer dull. Not one doctor can agree on what may have caused it, but “infection” is the diagnosis that makes them all feel comfortable. Infection of what, no one can say. And the lymph node is concerning to no one but me. I ask for a needle biopsy, I ask for an ultrasound. The latter I am granted, though whether it’s because they feel it necessary or simply wish to stop me from asking I can’t be sure. When the results are in I am told that the ultrasound showed my husband’s lymph node to be “enlarged”. I am irritated by the waste of time and obvious answer. But it doesn’t matter, because visiting hours are over and I am forced to leave. They are keeping him overnight for observation. I feel useless and powerless and angry-no one knows my husband, no one cares. He will be left alone in his room–just him, his thoughts, and his roommate, who reveals himself every now and then from behind the curtain through a belch or the sound of his urine hitting the plastic urinal while his swollen feet dangle over his bed. I feel the anger surge again as I ask myself why we are made to endure one challenge after another. Why can’t my husband just be well, sleep in his bed with his wife, wake up with his babies? Why can’t our life just be normal?

The next morning I am driving again in rush hour, again toward the hospital. Today is bright and breezy, hints of spring hitting DC and beckoning to tourists. The cherry blossoms will soon bring with their sweet blooms an influx of traffic, confused metro riders, higher-priced hotels. I find myself stopped again at the light with the homeless vet. He is back again today with a new sign and I find myself admiring his perseverance. I reach for my purse but drop it, startled, when I’m honked at. The light has turned green and this city doesn’t wait. I push the pedal down, missing another chance. This time I do not look back.

Two days later I am in the kitchen, the afternoon sun warming my back as I prepare our Friday night favorite, pad thai tofu. I am mincing garlic and surrounded by noise: my Jack Johnson Pandora station, my mother in law on the phone in the other room, my boys–all of them–rolling around on the floor playing a game; some mix of cars and zoo animals. Their jackets are lined up neatly near the front door, lying on the floor, their boots placed directly below them. They are ready at a moments’ notice.

My mother in law enters the kitchen, still on the phone. She is still talking when she pulls the phone away from her ear, removes the glasses from the top of her head and squints through the lenses to verify the identity of the caller on the other line. Without pausing to give warning, she yells “WHOOOP! WHOOOOOP!” into the family room, and then exits, offering no explanation to the voice on the other end, nor does she take the other call.

There is no mistaking this signal. In a flash my husband is running from the family room to the front door, holding our smiling, bouncing baby in his arms. He’s yelling something I don’t quite understand but it doesn’t matter–our boys do. Our toddler, squealing, abandons his toys and races after them yelling “Go! Go! Go!” I hear more squeals, I hear the rustle of jackets, the stomping of boots, the squeak of the front door opening. I toss the garlic into the pan; it sizzles and I take comfort in the familiar smells and sounds of what is now our home. I don’t look up. I hear the door slam and they are gone. I smile to myself, amazed that my husband can turn the otherwise mundane task of picking up his father from the metro into a great adventure.

“Babe?” he calls from the front door.

I drop my knife and run to the hallway, adrenalin pumping through my veins. I realize I am expecting bad news. A new habit.

“I forgot the keys to the firetruck. Can you toss them to me?”

I grab the keys to the Ford Explorer sitting forgotten on the table. Relieved, I toss them to my husband, who is radiant. Such joy, such life, such love he has for those boys. I hear the sound of metal against metal as he catches them in his left hand. Before I can speak he’s gone again, taking the firetruck on a rescue mission: Operation Recover Didi is in effect; there’s no time for chit chat.

Two days ago I was in the hospital begging for someone to check his lymph node to assure me this wasn’t melanoma’s return. I watch the SUV back out of the driveway and see my toddler wave through the window, beaming at the chance to be a fireman again this afternoon. I am not afraid of the lymph node, at least not today. Today is about Friday night dinners, rescue missions and firefighters. And today, the firefighters win.

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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.

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