Binders, Guest Posts, parenting

Consumed

July 16, 2015

By Liane Kupferberg Carter

I am at a fish restaurant in the theater district the first time it happens. My sister in law Susan and I have tickets for the matinee performance of “Love, Loss and What I Wore.”  I have just ordered the filet of sole, when suddenly the room gets too bright, the clatter of glassware too loud. A swell of nausea washes over me. My heart pounds; my throat constricts. I can’t breathe. Is it the smell of seafood? A panic attack?

I flee to the ladies’ room. Eventually the sick feelings subside.

But several days later it happens again. Nausea.  Racing heart. Tightness. I go see the cardiologist.

“Everything checks out okay,” she says. “I don’t think it’s your heart. You should see the gastroenterologist.”

I dread the idea of someone threading a camera down my throat. But the nausea quickly becomes unrelenting. I feel systemically sick. After I wake nauseated one night, teeth chattering, I schedule the endoscopy. When I wake up from the anesthesia, the doctor tells me, “The good news is that you don’t have an ulcer. You have some reflux. We’ll have the biopsy back in a week. We’ll start you on a proton pump inhibitor, but if you don’t feel better, come back and we’ll explore further.”

The futuristic-sounding proton pump inhibitor, it turns out, is a fancy name for a Nexium- type medication.  I am hopeful. And for a few weeks I do feel better.  Then the nausea and constriction come back.  The doctor calls it non-specific gastritis. Is he suggesting this is all in my head?  Anxiety gnaws at me. I start to dread eating. I find myself cancelling social appointments, because they all revolve around meals. I am consumed with feeling ill. I think about the many meanings of that word consumed.  Swallowed.  Spent. Drained.  Depleted.   Devoured.  Destroyed.  I wake in the night with a suffocating sense of my own mortality, thinking, I can’t be sick.  Mothers of special needs children have to live forever.

I return to the doctor. He palpates my stomach and weighs me.  I have lost 12 pounds. “I think the medication isn’t helping as much because you have a hybrid form of gastric reflux and irritable bowel,” he says. “Are you under stress?”

I tell him that my younger son, Mickey, has autism and epilepsy.  He nods sympathetically. “Okay, let’s just get an abdominal ultrasound to rule some things out.”

On a sweltering hot day in August I go to an over-air-conditioned radiology office in Manhattan.  I shiver in the waiting room for nearly an hour, turning the greasy pages of a year  old copy of People Magazine. Out of the corner of my eye I see movement: something dark and small scurries across the soiled carpet.

Someone calls my name, and escorts me into an examination room, where I put on a flimsy paper gown and lie down on the table. I chat with the technician, a pretty woman with  an Eastern European accent and kind manner. She takes a brief history. Then she presses the transducer repeatedly over my stomach.  She frowns at the screen. “See anything interesting?” I ask.

“I’m only the technician, the radiologist has to read it,” she says quickly. She doesn’t look at me.

 

I haven’t been home more than ten minutes when the phone rings.

“The ultrasound showed something,” the doctor says. “You have gall stones, which I’m not concerned about. They also saw a large mass in your liver. It measures about 6 centimeters.”

The room spins.

“It might be a hemangioma,” he says.

“What do we do next?”

“I’d like to get a CT scan,” he says.

“I’m leaving for vacation tomorrow,” I say. “Should I cancel my trip?”

“You can wait till you get back,” he says. “Unless you’re the kind of person who’s going to go crazy waiting.”

“I’m exactly that kind of person,” I say.

He tells me to call his office and ask them to fax me a referral, then call the hospital’s radiology department and say I need to be seen right away. “You can’t eat for three hours before the test,” he says.

As if I could eat at all.

“What do you think it is?”

He’s quiet. “I don’t know,” he says.

I hang up.

Bad things happen to people every day, I think. Man plans, God laughs. No one gets out alive. What made me think I’d be any different?  I might never see my older son Jonathan married. Never see grandchildren. Who will take care of Mickey?  Love him? Understand him? Know that look he gets just before a seizure? Talk him through a blood draw? Shield him from the sirens and storms that scare him so? Who will soothe him when he gets sick? Who will be there when he is old?

How much time do I have?

Breathe.

I look up “hemangioma” on Mayoclinic.com.  “An abnormal growth of blood vessels,” I read. “Can cause nausea and vomiting. Sometimes requires surgery. In extreme cases, complete removal and a donor liver.”

If that’s even what I have.

I call the hospital, while Marc argues with our insurance company. “No she can’t wait till tomorrow,” he says angrily. “The doctor said today. No she is not going to your local radiology lab, the doctor wants her seen at the hospital.”

“They say they’ll only authorize it if you go through the emergency room first,” Marc tells me.  “Forget that. We’ll put it on American Express and fight with Aetna later.” We drive  back to Manhattan. To the same hospital where our children were born. The same hospital where Mickey has spent endless days and nights tethered to EEG monitors. Recently he’d wanted to know why our first cat Puffin had died.  “Was she old?” he’d asked.  I’d thought about how Puffin’s bile ducts had grown torturously knotted. She’d been jaundiced. Cirrhotic. Then, finally, comatose. I’d told him, simply, “Her liver got too sick.” He worried it over for days, finally asking,  “But my other cats’ livers are okay?”  How will I ever tell Mickey what is wrong with me?

At the hospital they make me swallow a gallon of ice water. I shake with cold as the nurse takes my history. “What did the doctor say exactly?” he asks.

“He called it a large mass,” I say.

They position me in the scanner. I can’t stop shivering. My breath is ragged each time they order me to hold it. The nurse tells me that when they infuse the contrast dye, I will feel warmth flush though my body, a taste of metal in the mouth, a damp heat in the groin. “Don’t be alarmed, it’s normal,” he says.  It is over quickly. I dress, go to the bathroom for the third time, leave.

But by the time we are on the Bruckner Expressway I have to pee so badly I am whimpering. Is there a jar in the car? A bucket? Anything?   I’m desperate. “Find a bathroom!” I plead. I imagine squatting by the side of the road. It is the South Bronx, an area where we’d never dream of stopping. We see a yellow McDonald’s sign off the road and aim for it.

The bathroom wall is smeared brown. I try not to touch anything. Back in the car, I empty a bottle of Purell over my hands.  Then, from the Deagan Expressway,  I call the doctor.  “When will you know something?” I ask. “I’m out of the office tomorrow,” he says. “I generally send patients a letter. But you can log onto your account with us.”

An account?

Jonathan comes home early from work. I’m grateful Mickey is away at a special sleep-away camp.  All evening, Jonathan cannot stop hugging me. But I am locked in my private hell. I have never felt so alone.

I toss clothes into a suitcase. I don’t care what I take. New clothes or old, what does it matter?  My desk is a mess. I’d meant to organize it before vacation.  My drawers are disheveled. My closets need cleaning.  I can’t die yet, there’s too much to do.  It’s like my nightmares: the Indian Point nuclear power plant explodes. Or the Nazis are coming. Mere moments to pack before we must flee.

It grows late. Finally, I collapse into bed. “I’ll take care of you,” Marc says, and I  press myself tight against him. I bargain with God. I’ll take surgery. Chemo. Just let me keep going.  All night, I drift in and out of sleep, waking periodically in sheer panic, thinking feeling, oh my God oh my God.

The next morning Jonathan hands me a card and gift. “I’m sorry it’s late,” he says. My birthday was two weeks ago. Will there be another?

The card says, “You probably thought I didn’t notice everything you’ve done for me.”  I unfold it. “The big things…the little things…and everything in between. But I did notice, and I’ve been keeping track. And guess what?”

The card opens wide. It’s a yard long, filled with hundreds of hash marks. It says, “I’m still counting. Thanks for everything.”

Beneath it, Jonathan has written, “Love you so much.”

Till now I’ve held it together. No tears. Now I choke up. I put my arms around him, and he lifts me off the ground in a bear hug. Our cat sitter Milagros gives me a book about angels.  Though I am unlikely ever to read such a book,  I realize she wants to comfort me, so I thank her and tuck it in the pocket behind my car seat.

Marc and I get into the car, set the GPS for Montreal, get on the thruway. Two hours pass. We stop, take turns to use the restroom. While I wait in the car, my Blackberry buzzes with an incoming message: the doctor’s office. I click. My Blackberry is maddeningly slow; the hourglass icon spins endlessly, refilling and emptying its virtual sand.  The email refuses to open. In frustration I yank out the battery, replace it, and reboot.

Suddenly a thunk; the car rocks.  The driver next to us has flung his door against our car.  I glare at his retreating back.  The email finally opens; there’s an attachment. I can’t open it.  I need a computer. There’s one in the trunk under the luggage but where will I find a network?   Marc returns, I show him the message; he can’t open it either. “Just call them!” he says. We pull onto the highway. I call unsuccessfully three times, only to hear “If you know your party’s extension….”  I don’t.  I press option four, and leave a message. No one calls back.

I am chilled. Sweating.  Chilled.   I call again. Finally someone picks up. I ask for the doctor. We can’t hear over the roar of highway traffic, so Marc pulls onto the embankment. ”He’s not in,” the operator says. “Please,” I beg. “Isn’t there anyone else there who can read me the report?”

“I’ll have to have the nurse practitioner call you back,” she says, her voice neutral.

We pull back on the highway. Long minutes later, the speaker phone finally rings.

“Hold on, hold on,” we yell over the highway rumble, and Marc veers off the road again, our car ratcheting across safety struts in the roadbed. We stop on the grass shoulder. In the sudden silence, trucks whip by; our small car rocks and shimmies in their wake.  I huddle, fingernails digging into my arms.

“Dear Ms. Carter,” she reads. “This letter is a follow up to your recent abdominal and pelvic CT scan. I have reviewed the test results that were obtained.”

I am hanging in the balance.

“Your CT scan reveals benign liver hemangiomas. No other abnormalities are identified on this exam. If you would like to schedule a follow up appointment ….”

But I don’t hear the rest.

“Benign?” we chorus.

“Benign.”

“So we’ll schedule surgery when we get back?” Marc says.

“No,” the nurse says. We’ll just monitor you. Have a good vacation.”

Marc terminates the call, and we turn to each other.

We are both sobbing.

Reprieved.

 

Liane Kupferberg Carter’s articles and essays have appeared in the New York Times, the Chicago Tribune, Babble.com, Brevity and Literary Mama. Her memoir about raising her autistic son is forthcoming from Jessica Kingsley Publishers this fall. For more information, visit her website at www.lianekcarter.com, or follow her on Facebook at https://www.facebook.com/LianeKupferbergCarter and Twitter at @Lianecarter.

Jen Pastiloff is the founder of The Manifest-Station. Join her in Tuscany for her annual Manifestation Retreat. Click the Tuscan hills above. No yoga experience required. Only requirement: Just be a human being. Yoga + Writing + Connection. We go deep. Bring an open heart and a sense of humor- that's it! Fall 2015. It is LIFE CHANGING!

Jen Pastiloff is the founder of The Manifest-Station. Join her in Tuscany for her annual Manifestation Retreat. Click the Tuscan hills above. No yoga experience required. Only requirement: Just be a human being. Yoga + Writing + Connection. We go deep. Bring an open heart and a sense of humor- that’s it! Fall 2015. It is LIFE CHANGING!

Join Jen and Emily Rapp at a writing and the body retreat in Stowe, Vermont Oct 2015. This will be their 3rd one together in Stowe. Click the photo to book.

Join Jen and Emily Rapp at a writing and the body retreat in Stowe, Vermont Oct 2015. This will be their 3rd one together in Stowe. Click the photo to book.

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6 Comments

  • Reply B. Lynn Goodwin July 16, 2015 at 3:17 pm

    Such a scary situation. You tell this story well and I’m so glad that it ended with a reprieve.

    Benign might be the best 6-letter story in the world. When you hear it, the rest of the details fade into the background. Congratulations!

    B. Lynn Goodwin
    http://www.writeradvice.com
    Author of You Want Me to Do WHAT? Journaling for Caregivers
    Author of TALENT (forthcoming from Eternal Press)

    • Reply Liane July 20, 2015 at 9:50 am

      Yes, “benign” is definitely the best 6 letter story! Thanks so much for commenting.

  • Reply Cathy Chester July 17, 2015 at 5:09 am

    Liane,

    I have tears in my eyes. I know you and I still read on because I wasn’t sure what happened at the end! This piece moved me for so many reasons. I am so glad you are okay. Yet I can also see myself in this story. Thank you for writing this. A gorgeous piece about being human. AND dealing with doctors…

  • Reply Liane July 20, 2015 at 9:54 am

    Thanks, Cathy. I know this is a story you can relate to. Your journey as a health spokesperson, blogger and advocate inspire me. Thank you so much for taking the time to read and comment.

  • Reply Alison July 23, 2015 at 3:21 am

    This was a beautifully written, frightening post, which really brought home the fear of what might happen. I was holding my breath when you were trying to get the results over the phone, and exhaled when you got them. Good to hear it wasn’t anything more serious and I hope you’re feeling better soon,

  • Reply Liane Kupferberg Carter July 24, 2015 at 11:14 am

    Alison, thank you so much for your good wishes, and for taking the time to read and comment on my essay.

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