There are six of us at each appointment—Kasia, Witek, Cheyenne, Mirek, Maria, and I—as well as the doctor and a nurse and sometimes a resident or an assistant too. Sometimes the doctor has to ask which of us is the patient, which amuses us. We crowd the rooms, my tall and handsome family—my sister and I are the smallest—and at each visit, the staff has to add chairs.
Each doctor does the same simple test of my vision: he raises the index and middle fingers of one hand in a V shape and moves the V up, down, left, and right, in each of four visual quadrants, asking whether I can see it. When the V is moved into my lower-right quadrant, it’s invisible to me.
I immediately have another MRI as well as a CT/positron emission tomography (PET) scan, which will reveal the location of any fast-dividing cancer cells. We spend a long time with Dr. Aizer, who explains why surgery on the bleeding tumor should be done first, followed by radiation of the area and of the two other tumors. He takes care to describe everything clearly and spends hours discussing the scans. My oncologist Dr. Hodi, a world-famous expert in cutting-edge treatments for melanoma, says surgery and radiation must be done before he steps in with other therapies. His explanations are convincing, and we all agree with his proposed treatment plan.
As we wait to meet the neurosurgeon, Kasia looks at my records and exclaims, “Oh my gosh! Your surgeon is Ian Dunn, my friend from medical school.”
“Is he any good?” I ask.
“Fantastic!” she assures me. “Very studious.”
My family crowds into the small office, and Kasia is sitting with me on the examining table when Dr. Dunn arrives with his assistant. He and Kasia chat and laugh. “What a coincidence!” he says.
Dr. Dunn pulls up the scans on his computer and points to the frightening shapes on them. I glance at them quickly, then look away; as much as I have studied brains, I don’t like peering into my own when it is damaged like this. I don’t like to see scary black spots where healthy gray tissue should be.
Just as my ophthalmologist and I suspected, the tumor causing my symptoms is in the primary visual cortex, in the occipital lobe at the back of my head, which is why it’s affecting my vision. The size of a large raisin, it’s nestled down in the sulcus, the narrow valley between two gyri, like a little black sheep hidden in a crevice between two hills. Although it’s bleeding, it’s not in the worst place, I tell myself. If it were in my spinal cord, I might be paralyzed. If it were in my brain stem, which controls basic life functions like breathing, then surgery might be too dangerous and out of the question. I’m fortunate that it grew in a place that didn’t threaten my life but let itself be known. Had the tumor developed without noticeable symptoms—if my hand hadn’t disappeared and freaked me out—it might have thrived for quite a while before any of us noticed anything wrong. I’m sure I would have died. There’s a lot of luck in this unlucky situation. This nasty little raisin is saving my life. For now.
Dr. Dunn explains that he will stop the bleeding and remove the tumor. A lab will examine it to determine whether it is, in fact, melanoma, and if so, what kind.
“Am I going to go blind?” I ask. Surgery always involves serious risks, including, in my case, damage to the occipital lobe, which could result in the loss of vision.
“Probably not, although theoretically, it’s possible,” he says. “And if you don’t, you may still have vision problems. It’s also possible that you won’t wake up after surgery. That’s unlikely, but I must inform you of all the risks.”
His young male nurse, energetic and cheerful, presents a consent form listing all the terrifying things that could go wrong. I sign it and we leave.
The surgery is planned for the next day, Tuesday, January 27. But a huge snowstorm is on its way. It will come to be known as the Blizzard of 2015, a nor’easter that will dump tons of snow in the northeastern part of the United States and Canada. As we drive to my sister’s house in the Boston suburbs, snow is already falling. The narrow, winding roads are slippery and soon become shrouded in white. The Toyota skids often as we hold our breath.
We end up waiting two more days for my surgery as the blizzard covers the world around us. The snow piles up to the windows of my sister’s house. After the storm, it’s beautiful outside, quiet and calm. I walk with Kasia and Witek in the woods, and the snow reaches up to our thighs. It is light, fluffy. I lie down on my back and make snow angels. We are laughing. It is so good to be alive.
Since the surgery is delayed, I spend my time enjoying my family, and I completely block out any thoughts about the tumors. Although I’m an expert in the brain, I’m repelled by what’s going on inside my own. When I held that first brain in my palms at the brain bank, I could admire it with detached interest—because it wasn’t mine. Now, while I want to participate in my treatment by selecting a highly skilled team of doctors, I don’t want to look at my MRIs or think about what’s happening in my skull. My own brain presents a mortal danger to me.
It is Thursday before the roads are clear enough for
