“Mesothelioma,” he begins.
I don’t recognize the term, and it scares me. I quickly nod for him to continue.
“Basically, you’ve got this membrane, right? It coats and shields your internal organs—protects them. We call it the mesothelium. What’s happened is that the cells of your mesothelium have begun to divide abnormally and those cancer cells have begun to spread and damage your surrounding tissues and organs.”
I only hear the word, cancer. The doctor is pointing to a few scans, but I’m not listening. It’s cancer.
“How bad?” I ask, gripping the arms of my chair.
He sighs and bows his head. “It’s gone far.”
I stand slowly and walk to the door. He lets me leave. At the front desk, I schedule another appointment—with a different doctor. The nurse smiles sympathetically but I turn away. Outside, the hospital parking lot is deserted.
The next visit is the same. There is another consult, another doctor, but the same result. For the next week and a half, I schedule visit after visit with a new face each time. At my last visit, the doctor hands me a blue pamphlet. It reads simply, Belief and Acceptance for Bereavement. I toss it back.
I skip meals. I forego the gym. I lie in bed, watching the hours pass on the digital alarm clock. The phone rings. I hesitate before deciding to answer.
“Hi!” chirps the automated voice on the end. “Would you be interested in a one-year subscription to our monthly digest?”
“I refuse,” I answer.
The automated voice continues and I finally hang up. But something lingers in my mind, hovering slowly—refusal.
“I refuse,” I repeat, slowly tasting the words and the ease with which they fall from my lips.
“I refuse.” I prompt myself to continue. “I refuse to let this disease bind me to an inevitable fate.”
I stand upright, my feet sliding against the cold floor. “I refuse to succumb to a powerless enemy.”
I walk to the closet and begin dressing. “I refuse to prepare for bereavement.”
I head into the hall, towards the door. “I refuse to let myself lose.”
I continue to repeat the same two words as I pull away from the driveway. “I refuse, I refuse, I refuse.”
I drive to the library and walk upstairs to the shelf of books lined near the wall. I don’t know what to look for. My heart sinks and I panic—What now? I steer myself toward the large oak desk, where a woman sits reading.
“Can you help me?” I ask. “I…I need to find more information about mesothelioma.”
The young librarian seems confused, but smiles. She walks out from behind her desk and motions for me to wait. A few minutes later, she returns with an elderly man. He introduces himself as David, the library guru.
“So you want to learn about mesothelioma, eh?” The way he smiles as he speaks makes the word—makes the disease—seem almost conquerable.
He offers me a list of more than twenty titles. I spend the next few days in the round table nearest to the window, a stack of books piled beside me as I peruse them meticulously.
This disease is generally not curative. The median survival rate was eighteen months when aided by surgery and radiation. The disease carries a poor prognosis.
I take note of such statements, but they begin to sound less daunting as the days pass. I focus more intently on the alternative treatments and survival stories. There are recommended regimens of herbs and vitamins and minerals, offering solutions beyond surgery and radiation and chemotherapy. I begin a journal of my diet and health, titling it the Refusal Journal.
I spend time meeting with specialists of alternative and integrative medicine. I ask questions—lots of questions—and they listen carefully. I present my research and am as surprised as they are to realize how much I do know. After, they make their suggestions, eagerly anticipating my questions.
One woman reaches for my hand across the table and clasps it warmly. “You are so brave,” she says. “Please. Keep going.”
And I do. I track specific therapies and record their advantages. I include the idea of immunotherapies, which attempt stimulation in the immune system, thus combating the cancer. There are also biological treatments targeting specific proteins and enzymes to prompt inhibitor cells to regulate the abnormal division of cells.
David, the library guru, never asks but always listens while I propose my ideas for education. There needs to be more awareness about the alternatives, I argue. There needs to be a way to extend a life without the radiation and the surgeries. David agrees. He helps me organize a small information session, and more than twenty people show up that night.
I learn to distinguish fact from fiction, knowing which sources to trust and which questions to ask. The National Library of Medicine offers a reliable database called Medline, which houses information from 4,800 credible biomedical journals. I search for information regarding various herbs for alternative treatment, making sure to ask the three crucial questions—what substance was tested, where was it tested, and what was the outcome.
In my books, they talk about a man named James “Rhio” O’Conner who refused to surrender, too. He was diagnosed at the age of sixty-one with mesothelioma, and a prognosis of less than a year to live. Instead, he outlived the verdict by more than seven years, using the same methods of research, education and self-willed determination. His refusal worked.
My refusal gives me power. Each day takes me further from that morning in the doctor’s office, when mesothelioma was something invincible, too big to move or bend. Now, David is helping me coordinate weekly group meetings—not the kind you see on the pages of grief pamphlets with plastic smiles—but one that helps educate those willing to learn, willing to refuse. At the end of each day, everything goes into the Refusal Journal—my progress, my change, my growing hope. And from here,
I will continue refusing to surrender.
I will never be at the mercy of my disease.