No matter what I do — skip breakfast, set multiple alarms or go to sleep early the night before — I always seem to arrive at the hospital exactly 30 minutes late for my appointments. Today is Monday, and it’s the first of five straight days I’ll go to the hospital to receive outpatient chemotherapy injections. Then I get three weeks off. Then another week of chemo. And so on. My doctors say this will be my routine for the next year.
My 30-minute lateness buffer has become so consistent, I’m almost proud of it. I am on time, but it’s my time. Maybe I’m secretly hoping that if I show up late enough I’ll just be let off the hook, told I can take the day off. I set out for the hospital by cab; it’s the only way I can travel, for now, because with my weak immune system, public transportation is still off limits.
“Your eyes look red,” Abby says when I finally arrive. She’s one of my favorite nurses.
I’m just tired, I begin to tell her, which is true. I haven’t been sleeping so well lately, a mix of restlessness and staying up late watching movies. Then all of a sudden I find myself tearing up. Then full-on crying.
The crying surprises me, but I’ve been feeling down ever since I learned I would need to start chemotherapy again. Even though my recent biopsy results show no cancerous cells, my doctors say new research shows that for patients with high-risk leukemia, preventive chemo may be beneficial after a bone marrow transplant.
An attendant comes to the room to tell me that they are ready for me in the infusion suite. “I’m sorry,” I tell Abby as I start to cry again. “I’m just really tired.”
I’m standing on a street corner outside my apartment on the Lower East Side of Manhattan. I’m not feeling the effects of yesterday’s chemo, but I have a sore throat coming on. The sun is pounding down on my head. I’m feeling a little dizzy from the brightness outside, and I wish I had brought some sunglasses. I’m glad I remembered my fedora, which covers my nearly bald head. (This week I have about a quarter-inch of new hair, evenly growing in.) It’s just past 9 a.m., and someone’s trying to hail a cab on each corner of the street. Welcome to New York City. I sit down on the curb to rest. Finally I get a cab. The driver seems nice, an older man with a slight Jamaican accent.
As we speed up Franklin D. Roosevelt Drive, the highway that runs along the eastern edge of Manhattan, I catch a glimpse of a young woman cycling on a bike path along the East River. She’s about my age, tan, her blond ponytail moving in the wind. Someday I’ll ride a bike, too. When I’m well enough. But for some reason I find myself thinking about how silly I would look in a bike helmet. A sick, skinny girl with bony elbows and peach fuzz for hair – and a ridiculous oversize helmet.
“Hel-lo, anyone there?” the taxi driver says. We’ve arrived, and I have been lost in my thoughts. “Anyone home?” he repeats. I have this running joke in my head that when strangers ask me how I’m doing, I’ll unload a monologue about my latest cytogenetic report. But the driver is just trying to be nice. I know he doesn’t actually want me to tell him about how chemo can make a person fuzzy and scatterbrained. Or that I’ve become quasi-narcoleptic in public. “I’m just tired,” I say.
It’s my third day of “Chemo Week.” When I say that to myself, it makes me think of “Shark Week” on the Discovery Channel, especially considering that a film crew is following me. But I’m honestly more afraid of sharks.
I’m dragging a little today, but I have something to look forward to: There’s going to be a television crew filming my appointment for a project about young cancer patients. It was fun getting dressed and doing my makeup in the morning – though it wasn’t lost on me how odd it was to doll up for a chemo date.
It’s a strange thought to consider how you may look on camera when you’re receiving an injection. My arms are sore from the previous days’ injections, but I don’t want to ask to have the injection in my stomach because I feel self-conscious about baring my midriff on camera.
Having a film crew in the infusion suite is a self-conscious affair. The crew members are careful to respect the confidentiality of the setting, but I’m worried I’m creating a scene in a place where there are usually no cameras. At least there’s hope the project will be real and raw and tell true stories. One thing they’ll never relay to the audience, though, is the unmistakable smell of the hospital.
I feel the sharp pinch of the needle in the fleshy part of my left underarm. It burns for a few minutes, and then the stinging sensation is gone. I’m free to go home.
I wake up feeling as if I’ve been hit by a truck. My sore throat is worse, and now I have a runny nose and a cough. The delayed effects of chemo are setting in. As someone with a compromised immune system, I go through a priority checklist in my head whenever I notice any symptoms. Not all symptoms are an emergency, but none can be dismissed outright. A fever higher than 100.4 is an instant ticket to urgent care, so I’m checking my temperature regularly now.
At the hospital, my nurse notices that my breathing is labored, and I’m sent downstairs for a chest X-ray. It could be a problem with my lungs, a possible side effect of chemo, but it also could be nothing. I change into the robe they give me. The last time I had to wear one of these, I was in a hospital bed in the bone marrow transplant unit in April. I am not fond of robes.
In the X-ray waiting room, the TVs are blasting “The View.” There is a skinny boy, no older than 7, sitting across from me. A man who must be his father sits next to him. You can’t always tell the patients from the caregivers in a hospital. He looks like a relatively healthy boy. Then I see a small scar on his head, almost unnoticeable beneath short hair. He’s sticking his tongue out at his father. I hope it’s nothing too serious, but still, not a fun place for a boy to be on a sunny summer day.
“Ja… Ja… Ja-odd?” a nurse calls out from behind the desk, struggling to pronounce my last name.
For whatever reason, the waiting room is packed today. I recognize a handful of the patients from previous visits, but you never know everyone at the hospital. There are always new faces. One girl, about my age, I’ve seen before. She is a fellow transplant patient with the same form of leukemia. I am shocked by how much her appearance has changed since I saw her last. Her face is gaunt, and she looks weak. She tells me she has just learned that her disease may have returned. She’s waiting to find out more.
We both say the F-word at almost the same time. I don’t swear very often, but it just comes out. There’s a pause, and then we both break into a burst of laughter at the strange harmony of this.
My name is called, and the girl offers to accompany me to the infusion suite down the hall. My injection is over in a few minutes, but as I’m getting up to leave I notice that she’s still seated, and that the nurse is setting her up for her treatment. I offer to stay, but she insists that she prefers to be alone. We exchange phone numbers. As I’m leaving the hospital, I kick myself for not insisting on staying with her. I wanted to give her a hug, at the very least. But there’s an unspoken no-contact rule between recent transplant patients for fear of getting each other sick.
After five days of appointments, I’m ready to climb into bed.
By SULEIKA JAOUAD AUGUST 30, 2012
Suleika Jaouad (pronounced su-LAKE-uh ja-WAD) is a 24-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.