A holiday (2019)

Nine weeks I have spent on the seventh floor of the Feldberg Tower at the Beth Israel Deaconess Medical Center, but I don’t know how to leave the building. When I walk around the unit, I see the elevators through a window in the locked door. Could I step into an elevator, press the lowest number, and figure it out from there? Of course. But I don’t know how to do it because I was so feverish when they wheeled me into the building. Today or tomorrow, I will go down the Feldberg Elevators (I am looking at a map now) and out through the Feldberg Lobby to enjoy a few weeks of normalcy before I return to start my stem cell transplant. It will feel like a holiday.

My pneumonia is officially gone. My blood counts are rising as my immune system rebuilds itself. Fewer doctors come to see me, and they come later in the day. Often I see the attending alone at the end of the afternoon. And yesterday we started talking about what needs to be done before I can be discharged. I am finally going home. I keep telling myself that I will find a few moments in the kitchen, at the dinner table, or on the couch when I can close my eyes and pretend none of this ever happened. That will be part of my holiday.

It is Friday March 2, about eight in the morning. My birthday is tomorrow. Isabelle is flying in from Chicago, landing about an hour from now. A Nor’easter is moving up the East Coast. The storm was supposed to start overnight, but the pavement beneath my window remains dry. They predicted snow but now they expect rain, with high winds and flooding. Suzanne will meet her at the airport and bring her here to see me. And at some point, the doctors will decide whether I can leave. They will likely not decide this until the end of the day, which will be the height of the storm.

Nine weeks have filled this room with personal possessions. Art on the walls. Two shelves of books. So many games and other gifts from family, friends and colleagues. Copies of the many releases I have signed for all my different procedures. But no clothes. And no shoes. Everything I wore into the hospital Suzanne took home with her when she left me sleeping in the emergency room the morning of December 28. She arrives with Isabelle about ten. She has clothes for me. She forgot shoes. “I’ll bring your sneakers when they actually discharge you.” They leave with the art and the books and the games and almost everything else. It takes several trips to the parking garage.

The intern tells me it doesn’t look good for discharge today. Later, the attending tells me it does. I am wheeled down somewhere for one more procedure and wheeled back up to my room. Although I have been walking two or three miles a day, around and around the halls of the unit, they still insist that someone push me. It is now almost two. By three, my nurse has finished scheduling my outpatient appointments. By four, Suzanne has left the house and started driving back with Caleb to pick me up. The pharmacy has delivered my medication. My nurse has spread the bottles on my table. She is explaining each one, talking very quickly. Suzanne calls from the curb in front of the hospital (where she dropped me off when we thought the emergency room was there). “I am sending Caleb up.”

I am signing the discharge papers when Caleb comes through the door. Once more, the nurse recites all the reasons I should call. Fevers. Shortness of breath. Headaches. Dizziness. Nausea. Diarrhea. My blood counts are still low. I am still at risk of infection. Then she wishes me luck and walks out, leaving the door open. Caleb and I both stare at the open door.

I call her name. She returns. “I can just go?”

“You can just go.”

“No one needs to push me out in a wheelchair or anything?” I had just been forced to ride a gurney only a few hours ago.

“No. You can walk out.”

I thank her.

She leaves.

Caleb and I glance at each other and then again at the wide open door. “Come on,” I say. “Let’s go before they change their minds.” It feels like escaping. “Do you have my shoes?”

“No. We forgot.”

I have slippers. We grab the few bags left and walk quickly down the hall. “I hope no one sees us,” I whisper. I walk faster. He walks faster. I walk faster still.

“Should we start running?” Caleb laughs.

“It’s like Mom sent you up to break me out of here! And she’s waiting downstairs with the engine running.”

At the elevator, we keep glancing over our shoulders, like we’re being chased. Caleb grew a couple of inches while I was in the hospital. He is almost my height now. We take this picture just before he leads me out of the building. Suzanne is waiting right outside the door.

The storm does deliver high wind and driving rain. In the dark, we drive home through it. And I contemplate how little the world has changed without me. We drive along the Jamaica Way, tight and winding like a four-lane road designed in Europe and then filled with large American cars. That is still the same. I see the same broad trees along the sidewalks with the same deep scars from cars that hit them decades ago. There is Jamaica Pond, as always, and the boathouse. The gates to the Arboretum. Forest Hills Station. Morton Street. Blue Hill Avenue. Mattapan Square. Then across the Boston border and into our town and all the houses I have been driving past since we moved there, a few months after our wedding. None of our neighbors have even bought a new car.

Our dog couldn’t visit me in the hospital. I really missed the dog. A Welsh Terrier named Georgie, she has a warm relationship with everyone in the family, but she is particularly attached to me. And I am particularly attached to her. When I travel for work, she eats less, mopes more. When I am home, she sleeps under my feet wherever I am sitting. But whenever any one of us is missing, Georgie watches the cars pulling in the driveway and scrutinizes whoever comes up the stairs to our apartment. She is waiting for me at the glass door to our kitchen.

Ten minutes pass after I say hello to the dog and before I start cooking dinner, as if the last two months haven’t happened.

There are only two indicators of my prolonged stay in the hospital. All three children sit in the kitchen and talk to me (I am usually lucky to have one in there while making dinner). And I don’t have any hair.

We celebrate my birthday on Saturday. I cook dinner again. Isabelle makes a cake. On Sunday night, Suzanne has her Oscar party. It’s mostly her sisters. They all dress in costume. Suzanne always has a theme, and this year it is:

Awesome ladies, badass chicks,
or fabulous women you admire in movies,
this year or any year!

I hate dressing up, so each year Suzanne picks a character who matches the theme and dresses like me anyway. Usually it is someone who wears a flannel shirt, like a character from Fargo. This year, because of my hairless head, she decides I am Sigourney Weaver as Ripley in Aliens 3. Except I keep forgetting the character’s name and calling her Ridley. We have been having these parties for over twenty years, and getting movie details wrong is part of my role—as is sitting down long after the ceremony has started, only randomly guessing the winner in any category, then falling asleep in my chair, and going to bed long before the Oscars are over.

Isabelle returns to Chicago early Tuesday morning. On Wednesday, I go back to the gym for the first time. Then I pick up some groceries. Mandy calls as I pull into our driveway.

“You went to the gym?” she asks. “And the grocery store? But that’s so strange. Doesn’t that seem strange? It’s like none of this ever happened.”

On Thursday, we have about eight inches of wet, heavy snow, our second Nor’easter in less than a week. Rosalind and Caleb and I shovel. We meet our next-door neighbor at the end of our driveway. She knows I have been in the hospital and wants me to know how sorry she is, but she seems a little discombobulated expressing sympathy while I stand at the end of the cleared driveway, holding a shovel in my hand. I pretend I am not tired. After that, the three of us go for a walk in the woods together while the wet snow still hangs on the tree branches. I walk slowly and they wait. Rosalind takes this picture of Caleb and me.

Rosalind Smith

Although I was conscientious about exercising in the hospital, ordinary life uses a different set of muscles. Just standing at the stove makes me tired. Despite how tired I am at the end of every day, I still have trouble sleeping. I hated being in the hospital so much—the isolation and the lack of control—but nurses and doctors came at the press of a button. I keep falling asleep and then waking up worried. Is that a headache? Do I have a headache? No. But I might have a fever. I get out of bed to check my temperature. No fever. The pillow is wet. I have been sweating. My muscles and my joints ache. And my throat seemed sore an hour ago. When leukemia started in November, it felt like a cold and I sweated at night. Is it already getting stronger again?

Stepping back into my life, or some parts of my life, has been so restful. It is so comfortable and comforting to do the things I used to do. To cook. To clean. To be home for dinner. To sit on the couch with Suzanne and watch television. To hear Caleb playing the saxophone. To wonder when Rosalind will come out of her room. It has helped us, as a family, gain a sense of control over what is happening.

But it isn’t a return. It’s only a reprieve. There are many times, after everyone has gone to school or work, when I feel like I am hiding. The more I act as if nothing has changed, the more conscious I become of how much actually has. The real risks lie ahead for me. The stem cell transplant is a complicated process that often leaves patients with other lifelong health problems. Even in the best case, there is a long convalescence. I will not come home the next time cooking or working outside or taking walks. This is my last taste of normalcy for months. It may be my last taste of normalcy ever.