Life, Interrupted: My Incanceration

30 Jun

By SULEIKA JAOUAD
Photo Credit: Anne Francey

 

The first time I was hospitalized after my cancer diagnosis — one year ago this month — I was placed in isolation in a drab room where the windows didn’t open. An electronic bracelet was strapped to my wrist, and I was issued a backless hospital gown. A triple-lumen catheter was surgically implanted in my chest to create a central line through which chemotherapy and fluids would be administered. I was all tied up, with both limbs connected to a monitor holding a ring of hanging IV bags.

I dubbed this moment my “incanceration.”

Over the course of the next six weeks, I would have a lot of time to reflect on the hospital experience. Cancer has a way of issuing patients a sudden ticket to the world of otherness. As the chemotherapy took effect, and I Iost my hair, I looked different, I felt different and I even sounded different, as I dragged the beeping monitor with me everywhere I went. For a while I referred to it as “my little friend,” because he never left my side.

I couldn’t help but feel a bit like an inmate shackled to the schedule of the outside world. I remember guiltily feeling envious, and eventually somewhat resentful, of my visitors when they left my room. “I’m taking a break, and I’ll be back soon,” a friend would say. I could understand this, but it also made me angry. I, too, desperately needed a break.

The escape fantasies began soon after. When I lost enough weight that I could slip off my electronic hospital bracelet, Central Park taunted me from my window. I plotted my escape and dreamed about stepping outside and standing in the rain — even if just for a minute. Fresh air is an amusement ride in the imagination of someone who has been in the hospital for an extended stay.

Continue reading, here.

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Life, Interrupted: Fighting Cancer, and Myself

22 Jun

By SULEIKA JAOUAD

Photo Credit: Shayla Harris/The New York Times

There is a dreadful routine to chemotherapy. My life has been synched to a chemotherapy calendar ever since my leukemia diagnosis last year. I have become an expert at predicting when side effects and symptoms will set in. It’s a ghoulish monthly party, and the guests always arrive on time: nausea, vomiting, chills, exhaustion, fever, mouth sores, pain, infections and emergency hospitalizations.

Despite the clockwork of these cycles (start chemo, wait for symptoms, get sick, go to the hospital), at the start of every new round I convince myself that the outcome will be different. This time, I am going to be stronger than my treatment. This time, my mind will outwit my body. This time.

But over the past year, after 28 rounds of treatment, not once have I “won” this secret battle with myself.

The cancer world is awash in battle language. Our culture repeats these warlike phrases over and over, like mantras. Cancer books love to traffic in this take-no-prisoners language. They talk about cancer “warriors,” fighting and winning a battle for health. They even encourage patients to visualize chemotherapy as a sea of soldiers entering the bloodstream to fight off the enemy disease. In a lot of ways, it’s an attractive line of thinking. It’s the hero’s journey mixed with the glorification of war. It’s the us-versus-them theme — except in this case it’s us-versus-us. Cancer is one’s own civil war.

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Feeling Guilty About Cancer

15 Jun

 

By SULEIKA JAOUAD


Image

Photo Credit: Ashley Woo

Guilt, like cancer, is a greedy guest feasting on its host. It is nondiscriminatory. We have all felt it, wondered what it was doing there, willed it to go away.

I’m aware that feeling guilty about having cancer is more than a little irrational. But when it comes to cancer, guilt is a mercurial, equal-opportunity burden that affects both patients and caretakers.

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Finding My Cancer Style

7 Jun

 

By SULEIKA JAOUAD

One year ago, almost to the day, I asked my hairdresser to cut off 16 inches of my hair. It was a pre-emptive strike. A few days later I would be admitted to the oncology unit at Mount Sinai Hospital in Manhattan to undergo chemotherapy to treat leukemia. Everyone knows that chemo takes your hair. I wanted to take control of what I could before the poison did its damage. But I left the hair salon in tears, my braids in a plastic bag.

When I was given a cancer diagnosis at the age of 22, sitting in a doctor’s office less than a mile from my childhood home, I remember watching my dad burying his face in his hands. My mom rubbed my back with her open palm. The room fell silent for 30 seconds, or maybe it was three minutes. Then I managed to blurt out two questions: Was I going to make it through this? My doctor told me that my leukemia was “high risk.” I would need to begin treatment immediately. The second thing I asked was whether I was going to lose my hair.

As I tried to prepare for my first round of chemo, I scoured the Internet, read the pamphlets my doctor had given me and paged through the cancer books that friends and relatives had dropped off at the house. I was still catching up on the basic details of my disease, its treatment and its prognosis. I had no idea how to prepare for the havoc it would wreak on my appearance — the part of the cancer experience that the world can see.

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Keeping Cancer At Bay

1 Jun

 

By SULEIKA JAOUAD

Photo Credit: Greg Edwards

“How are you doing?” is a complicated question for a cancer patient.

Watching for the return of cancer after a bone marrow transplant is a full-time job, even when results from the first biopsy seem hopeful. Last weekend, my doctors gave me a “pass” to leave the Hope Lodge, my temporary home in Manhattan, for a few days. It was good to have a break to travel upstate to my parents’ house. Unfortunately, I got sick to my stomach during the four-hour trip and spent most of Friday and Saturday sleeping in my childhood bedroom.

But I couldn’t help thinking of Memorial Sloan-Kettering Cancer Center, the New York City hospital where days earlier my doctor had delivered the results of my first bone marrow biopsy since my transplant. If you had asked me how I was doing last Thursday morning — crossing Manhattan in a cab on a muggy, drizzly morning on my way to receive the test results — I would have described the sense of dread welling up inside of me. The biopsy would be the first glimpse at my new bone marrow, the foundation of my new immune system, which had been “rebuilt” with my brother Adam’s healthy stem cells during my bone marrow transplant last month. Would the cancer still be there?

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The Beat Goes On

25 May

By SULEIKA JAOUAD

Photo Credit: Anne Francey

Music, as the saying commonly goes, can soothe even the savage beast. What about the frail beast? The sad one?

My parents started me on the piano at the age of 4, but it wasn’t until the fourth grade that I chose music for myself. The music teacher at Lake Avenue Elementary School stood in front of the class with a dozen stringed instruments lined up at the front of the room. Choose your instrument, she invited us.

The thought that I could choose my instrument was a revelation. Violins, violas and cellos were the hot items — and there were more of them than any other instruments — but I was curious about the big wooden object at the end of the row, leaning up against the the chalkboard. The double bass. It was taller than I was — taller than the tallest boy in my class — and what’s more, my teacher told me I was one of the only girls in her memory who’d expressed interest in playing it. I had to try it. That afternoon I took it home and gave it a name: Charlie Brown. I was going to be a double bassist.

By age 16, I was a student in the precollege program at the Juilliard School of Music in New York City. Every week I commuted from upstate New York — a four-hour ride on Amtrak — often barely making it on time to my 9 a.m. music theory class. Everywhere I went, my bass came with me. It was cumbersome. It attracted stares — and sometimes unwanted offers of help from strange men. Lugging it around the subways and buses and sidewalks of New York City was a chore — especially for a teenage girl who insisted on wearing heels — but it was worth it. When I showed up somewhere to play, I felt like I had already warmed up.

Last spring, one year out of college, I found myself once again commuting from upstate to the big city. Same train, same route. But this time I was on my way to see an oncologist. I was 22 and I had just been given a diagnosis of acute myeloid leukemia. My relationship with music changed abruptly. I no longer had the stamina or the interest in playing the bass. And once I entered the hospital to begin my intensive chemotherapy treatments, I stopped listening to music altogether.

Between the hospital walls, hearing my favorite songs filled me with a deep, unbearable ache. Music, and the memories attached to them, reminded me of all that was no longer. Where had that feisty, fresh-faced music student with long auburn hair gone?

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Hope Is My New Address

22 May

 By SULEIKA JAOUAD 

Suleika Jaouad at a halfway house following her bone marrow transplant.

Photo Credit: Anne Francey

I opened my eyes to find doctors peering over my hospital bed. They had some welcome news.

I had for a month been living in isolation in the bone marrow transplant unit of Memorial Sloan-Kettering Cancer Center, my only option after my diagnosis with acute myeloid leukemia last year. Now, the doctors cautioned me that while my immune system was still very weak, my brother Adam’s healthy cells were beginning to engraft in my bone marrow. I was showing signs of progress: I had transitioned from my feeding tube to solid food, I was able to walk around — slowly — without assistance, my blood counts were going in the right direction, and I no longer needed to be connected continuously to an IV machine.

It was “graduation” day. The doctors were sending me to the Hope Lodge, a halfway house sponsored by the American Cancer Society, in Midtown Manhattan. I would live there for the next three months, cared for by my boyfriend, Seamus McKiernan, who is again helping me write this column as I regain my strength.

Rolling out of the hospital onto York Avenue in a wheelchair, I took my first breath of fresh air in weeks. It was a muggy spring afternoon, but I was huddled in my father’s wool hat and a ski jacket, and my teeth were chattering. My belongings from the four-week stay were piled precariously in a second wheelchair, which a nurse pushed behind me. The two wheelchairs clogged the busy street outside the hospital’s main entrance. People stepped aside, inadvertent spectators to our little procession.

But before I could relish this moment, my mother was lunging at me with a face mask. I shot her an annoyed look, but I knew she was right. For the immediate future, anywhere I wanted to go in public I would need to wear gloves and a mask. No subways, no crowds. My feet touched the sidewalk briefly as I got into the waiting taxicab.

Continue reading, here.

Follow @suleikajaouad on Twitter and on her Facebook Page.

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