Dr. Atkins gives me a dismissive half-smile. “I don’t care what worked and neither should you,” he says. “The tumors are disappearing. We should be grateful for that.”
I am grateful. But the scientist in me is annoyed. Perhaps only another scientist can really understand, but I’m dissatisfied by not getting a precise answer to what succeeded in this unique experiment—the experiment of me.
My brain scans from June 19 (left) and July 21 (right). The swelling (the areas in white) has decreased dramatically, and the tumors, including the one in my frontal cortex, have all but disappeared.
Dr. Atkins offers to show us the brain scan on his computer, and Kasia peers at it, amazed at the change.
“It’s dramatic,” she exclaims. “The tumors have almost all disappeared.”
I don’t look at the images. I cringe at the thought of seeing photos of my wounded brain. Mirek and I sit in silence, too traumatized to express our happiness. This date marks an amazing breakthrough that we are not ready to trust.
The next morning, July 22, Mirek writes a short note in his diary: We enjoyed the news as much as we could.
His diary entry sounds like an unimportant footnote. In truth, we are all in a state of shock. Our emotions have been battered for months. Everyone expected me to die, then I got a pardon, then more bad news, and now another reprieve: the tumors have disappeared.
None of us remembers anything else from that day.
Dr. Atkins believes it was the dabrafenib/trametinib combination that worked so spectacularly, so he directs me to resume taking a half dose of dabrafenib. The next days and weeks are troubling, as new side effects appear: bleeding sores on my hands, lips, and face. When I awaken at night and go to the bathroom, the image in the mirror is terrifying: blood seeping from my lips has dried around my mouth and onto my neck. I look like a vampire after a busy night. My pillow is stained with blood, and so are the sheets. The skin on my feet is dry and so cracked that every step is painful, and my heels are bleeding too.
On some nights, I have a fever as high as 103 degrees, with chills so profound that in the middle of the hot summer I sleep under two thick quilts and a pile of blankets with a gray wool cap on my head. The shivers nearly knock me off the bed.
There is worse to come. Very early one morning, as Mirek is exercising in the basement, he hears an unusual bang and races upstairs. He finds me unconscious on the bathroom floor, my body slick with sweat, my pajamas drenched. The top of my head is bleeding, and a chair lies toppled next to me. I have fainted and hit my head on the tile wall or stone floor—he can’t tell which. I soon come to with no idea what happened. Mirek insists that from that point on, we leave every door inside the house open so he can hear if I’m in distress.
Dr. Atkins decides I need to take a break from dabrafenib again, and then also from trametinib, and he takes me off them. My skin improves and I start feeling well. And, despite my not having any treatment for two weeks, the next MRI, on September 1, shows no new tumors. And the old ones have shrunk even more or disappeared. Every six weeks, I get new brain scans. Over the next few months, several small tumors appear and are treated with CyberKnife radiation. They grow slightly and then shrink. Dr. Atkins keeps me off the dabrafenib but puts me back on the trametinib.
Over the fall of 2015, I continue to have rashes and experience bleeding on my hands, arms, and the top of my skull. But I seem to have returned to the person I was before all of this began. I don’t get lost walking around the neighborhood. I remember how to make my favorite recipes. I’m not snapping nonstop at my family. I talk by phone each day with Kasia and Maria in my normal, loving fashion. Mirek and I have friends over for lighthearted dinners. My grandsons come to visit and I play with them happily.
Over time, Mirek shares, bit by bit, how I behaved in June and July. He reveals how I was someone different than the person he knew, a shadow self, and how they all worried the real me was gone forever.
I promise him that I will never again be so mean to him and our family. But inside, I know it’s a promise I may not be able to keep if my brain fails me once more.
From time to time, I make stupid jokes, pretending to lose my mind, faking that I don’t know where I am. He doesn’t laugh. It’s cruel, I realize, and I stop doing it. After all, I’m the only one who didn’t witness what happened. I’m the one—in a way—who suffered least.
In January 2016, after a year of aggressive cancer treatments, the torment of new scans, and anxiety over whether they would reveal new tumors in my brain, I sit on the couch in my living room. My arm is swollen and tender. It’s the lymphedema from my breast cancer, exacerbated by immunotherapy for melanoma.
Why haven’t I done something about this sooner? I can’t believe I’ve never taken care of it.
I do a computer search for nearby clinics with physical therapists who specialize in lymphedema. Oh, here’s one close by, at Inova Fairfax Hospital. I pick up the phone and call the office. The receptionist schedules me for an appointment in just a few days, on January 15.
