“Dr. Atkins is very good. I’ve worked with him,” Dr. Flaherty tells us. “You should be treated there. It will be very convenient since you live in that area, and he’s a great doctor.”
Given my poor prognosis, my family and I agree that the best approach is to attack the melanoma with every possible weapon: radiation, immunotherapy, and then, perhaps, targeted therapy. “If you get all of those, it’ll be like we’re throwing the kitchen sink at you,” Dr. Flaherty says with an encouraging smile.
In late March, about two months after neurosurgery and after several sessions of radiotherapy, I finally leave Boston and return home to Virginia. The incision on the back of my head has turned into a long scar, which is clearly visible, since my hair, shaved for surgery, hasn’t grown back yet.
My new white bike is waiting. Orphaned in a dark corner of the garage, it looks at me reproachfully, as if asking, Why did you bring me here if you’re going to die? I pat its soft, white handlebar, and, for the first time since this ordeal began, I cry. “I promise I will ride you,” I whisper.
A day later, I keep my word. I climb on the bike and start riding slowly through the quiet streets of my neighborhood, steering cautiously so I don’t fall and hurt my recently stitched and radiated head.
Roughly two months after brain surgery, I tentatively train in the streets of suburban Annandale, Virginia.
My doctors have told me I have to wait a few weeks after radiation before I can start another treatment. And so, at the end of March, Mirek and I—along with Kasia, my sister Maria, and her husband, Ryszard—escape to the Big Island of Hawaii to forget our dark thoughts of death and to gather strength from one another. Mirek, Kasia, and I bicycle more than two hundred miles through the lava mountains. My vision is perfect, my brain working as it always has, and the fact that I’m not experiencing any symptoms gives me some hope that I’m getting better. I’m filled with optimism. I begin running a few miles every day and working out nearly as vigorously as ever. Out in the open ocean, I swim part of the course of the famous Lavaman Waikoloa Triathlon that is soon to take place. On a whim, I even enter a 5K race through lava fields, and I place fourth in my age group.
Hawaii affords us a blissful respite from the chaos of the past two months. But in the back of my mind I am endlessly turning over Dr. Flaherty’s advice. I’m imagining what the immunotherapy trial at Georgetown might be like and whether it could actually work if I’m able to enroll in it upon our return home. If not, what then? Will I be able to run, bike, and swim for much longer? Will I ever see this beautiful place again? And what of my family? Will this be the last happy time they remember spending with me?
Every night in Hawaii, all five of us stretch out on the tropical lawn in front of our bungalow, hold hands, and stare for hours into the enormous, glittering sky. I don’t want to die. I lift my foot to touch a star with my big toe, and then another star, and another, and make wish after wish. Soon, five pairs of feet are dancing across the stars, skipping over the vastness from which we came and to which we’ll return. We are together now, tight as can be.
When we come back from Hawaii at the beginning of April, I call Dr. Atkins at Georgetown Medical School, which is about twenty miles from where we live. Two days later, Mirek and I meet with him.
Dr. Atkins describes the protocol of the upcoming clinical trial, known as CA209-218, which is taking place in sixty-six locations and will include several hundred people in the United States and Canada. Every three weeks, he explains, a combination of two monoclonal antibody drugs, called checkpoint inhibitors, will be simultaneously infused into my veins to boost my immune system. These drugs are supposed to teach dysfunctional T cells, which are fooled by cancer into ignoring the disease, how to recognize, attack, and (we hope) kill off the melanoma cells invading the body. The drugs, ipilimumab and nivolumab, are used for the treatment of advanced melanoma. They were separately approved by the FDA, in 2011 and 2014, and in a very short time, they’ve revolutionized treatment of what was considered to be a terminal illness. Combining the two drugs is more effective than using them individually but carries a larger risk of serious adverse effects, including severe rashes, thyroid problems, and other autoimmune reactions, he says. This combination has been tried on melanoma that has metastasized to the brain, but only in a few cases and with mixed results.
Some of what Dr. Atkins shares with us is familiar by now, but much of it is not. Chemotherapy, which for many years has been the gold standard for cancer treatment, isn’t effective against melanoma, one of the most aggressive cancers, he says. What’s more, chemotherapy indiscriminately attacks all fast-growing cells, including healthy ones—and it causes many side effects, from hair loss to infections, neuropathies, nausea, vomiting, and fatigue. By contrast, immunotherapy drugs don’t directly target cells but instead treat the patient’s immune system so that it can seek out and attack the tumor cells. While there can be serious side effects with immunotherapy too, it holds great promise for treating melanoma.
Then, the magic words: Dr. Atkins invites me to join the clinical trial. It’s tremendous news. Clinical trials have a limited number of patients. I’m going to be a guinea pig or, better yet, an experimental rat, I think to myself with a smile.
Just hours earlier, Mirek and I realized that we’d reached a wall with this whole nightmare, that there was nothing more to do but wait. Now, all of a sudden, a gate
