“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?
At my appointment, my doctor announced he had two pieces of news. The good news was that my biopsy showed no cancerous cells in my bone marrow; the second part of the news was that I had to begin chemotherapy again immediately to keep my cancer from returning.
The CT scan. The biopsy. The X-ray. The waiting. These tests, at once commonplace and unnerving, are the trusty siblings of cancer treatment. For every round of chemotherapy, for every procedure, there’s a test that determines how well it worked. In between, there is time to wait and not much else to do. Bad news can always be just over the horizon. And good news rarely comes without qualifications.
On Sunday, up at my parents’ house, I mustered the energy to walk to the next-door neighbors’ Memorial Day barbecue. Wearing the face mask I need in public, I sat on a lawn chair in the corner of the backyard, next to my brother Adam, my bone marrow donor. Adam reminded me that it is his job to “police” my face mask use, as even the most common germs can be deadly to my fragile immune system. I slipped bites of cantaloupe, which my mother had prepared specially for me to ensure it was sanitary, under my mask as Adam looked on, smiling. “Maybe you should have a pouch for food on the inside of your mask,” he joked.
Neighborhood children ran through a sprinkler at the center of the backyard, dripping wet and shrieking happily. Their parents gathered around the food tables, some drinking the mint juleps that my neighbor Shane had prepared. My parents stayed close by, chatting with friends but fretting about whether I was getting dehydrated from the heat. My mouth watered for the six different salads at the nearby table — I counted them — couscous with raisins, quinoa salad, fresh arugula and the rest of them, but I knew I wouldn’t be able to have any for fear I could get sick from any bacteria that might be in them.
I was enjoying the breeze. A neighborhood girl named Calla, the 9-year-old daughter of one of my father’s university colleagues, came up to me to say hi. The last time she had seen me I had long hair.
“Why are you wearing a mask?” she asked.
“Because I’m sick,” I said.
“Why are you sick?”
When I didn’t answer, she paused for a while, then suggested I paint on the outside of the mask, or draw a mouth on it, “like Halloween.”
I’ve begun to think of cancer as a junkyard dog. It may be fenced in, but it’s snarling, always trying to dig under the fence. So the tentative news was good. My bone marrow was clear, but I would have to work like hell to keep it at bay, behind the fence. One test can determine an initial diagnosis, but it’s many tests over months or years that track the progress to a cure. That means there’s always another scan down the road. The biopsy next time.
Smoke rose from the grill, where my neighbor Jamie was cooking the pork belly that everyone’s been raving about, past the hedge between the houses and off toward my bedroom window of my parents’ Victorian-style house, where my family moved when I was 12.
Cancer is always lurking in my ZIP code, whether I’m in Manhattan or in upstate New York. Today is Day Plus 50 — 50 days since my transplant — which means I’m halfway to Day Plus 100, the critical period for bone marrow engraftment. I’m still sick to my stomach a lot of the time, which I know will increase when I start the new chemo in a few weeks.
The good news is that there is no bad news to report. A year from now I’ll be past Day Plus 300. And who knows? Maybe I’ll be running in the sprinklers.
MAY 31, 2012
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.