Archive | June, 2012

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.

Continue reading, here.

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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.

Continue reading, here.

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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?

Continue reading, here.

Follow @suleikajaouad on Twitter and on her Facebook Page.

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