Hope Is My New Address … Life, Interrupted

17well-suleika-tmagArticleI 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.

The Hope Lodge is a nondescript building with five floors and 60 rooms next door to a Jack’s 99-Cent Store, one block from Penn Station. The sixth floor is reserved for healing seminars, cooking classes and other events sponsored by cancer groups. I see other patients in the kitchen or the elevator, and we stop for specialized chitchat like “Just coming from the hospital?” or “How did chemo go?” We are all here for a different amount of time, from a few weeks to a few months. With schedules overlapping, we are temporary hallmates, beholden to the kindness of strangers who raised the money to open this center.

I am enjoying my freedom, but cancer continues to dictate my choices. My new freedom means not being awakened every couple of hours by a nurse with pills in her hand. It’s not seeing doctors with their masks and their caring, furrowed brows, and not being connected to an IV machine 24 hours a day.

Until recently, my food has come through tubes. The last full meal I remember was an Easter dinner in the hospital back in early April, when I took a few bites of chicken and mashed potatoes. Freedom now is being able to eat a home-cooked meal — and then fighting to keep it down.

Freedom also means being patient with my loving mother and boyfriend, who try hard to fill the shoes of the hospital staff, cooking for me in the communal kitchen down the hall and making sure I don’t fall off my chair in the shower. Freedom is a pillbox adorned with the days of the week, and the responsibility to take the medicines on time. Freedom also means returning to the hospital several times a week, where I receive hydration, magnesium and the nutrients that chemotherapy has wiped out.

But freedom is also the crazy urge that I’ve felt twice in the last two weeks: a fleeting feeling of being O.K. — like everyone else — even if the truth is that I spend most of my hours in bed.

Last Tuesday, after four days of being unable to even walk down the hall, I got a burst of energy and convinced Seamus, against his protests, to take me out shopping. Before long I was in a fitting room at American Apparel. I had eight items ready to try on. Rihanna was on the overhead speakers. But the room was getting hot. All of a sudden I made a beeline for the front door, afraid of throwing up on a nearby mannequin. Freedom means finding a semiprivate piece of concrete outside, between a parked police car and a mobile lunch truck, to try to pull myself together.

Just this past weekend, after my brother Adam finished his last college exams, he took me outside my building for a walk. Free on the streets of Manhattan and sporting a new wig on my bald head, I triumphantly took a photo of myself to post on Twitter. But the escapade was short-lived, and I soon returned to my room. I had a fever, and spent the rest of the weekend under the covers, shivering, my mom on and off the phone with the doctor.

In the end, freedom was telling Adam that I couldn’t go to his party in Saratoga Springs this weekend. It’s his college graduation. He’s moving on, and I wanted to be there. But for now, freedom means staying in my room, right here at the Hope Lodge.

Suleika Jaouad (pronounced su-LAKE-uh ja-WAD) is a 23-year-old writer from Saratoga Springs, N.Y. Her column, “Life, Interrupted,” chronicling her experiences as a young adult with cancer, appears weekly on Well. Follow @suleikajaouad on Twitter.

May, 2012

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