At the pool, I love to slip on my goggles, dive into the deep water, and swim. My arms slice through silky water, my lungs open wide to draw in the air, my rhythmic, powerful strokes propel me forward. Day by day it gets easier, smoother, becoming almost effortless. I’m not nearly as fast as I used to be, but the pleasure of the water caressing my body and the feeling of accomplishment are just the same as before.
And then, suddenly, from nowhere, trouble strikes again.
One afternoon in May 2017, two weeks before the race, I’m sitting in my office at NIMH when my left leg starts twitching uncontrollably. I try to hold it still but can’t. Although it’s a very short episode, lasting maybe thirty seconds, I am very frightened. I know what it means: I’ve had a small seizure. I immediately go in for an MRI, which reveals a small but disturbing crater in part of my right motor cortex, the site that controls the motor movements of my left leg and arm. Radiated almost two years ago, the spot has now turned into necrotic tissue, with dead cells and debris that are choking off healthy brain cells. That’s why my leg began twitching.
Necrosis is a side effect of radiation, and it’s not good news. My brain is not healing well. My first reaction is that I will have to cancel the race in order to focus on healing my brain.
Dr. Atkins prescribes steroids yet again for the inflammation and swelling in my brain that have occurred as a result of the necrosis. And he explains his long-term plan for healing the wounded brain tissue. Every three weeks, I will receive IV infusions of a drug called Avastin, which was originally developed to treat solid cancer tumors by choking off their blood supply so they stop growing. I don’t have any new tumors, but Avastin will, Dr. Atkins hopes, seal the leaking blood vessels in my brain and stop the edema and inflammation in the wounded tissue. Nobody really knows whether it will work, he adds; Avastin has been used only occasionally to heal post-radiation wounds like mine, and the outcomes are not yet clear. But there is no other treatment to try, he tells us, so we must simply hope for the best.
When I mention the upcoming Quassy triathlon, Dr. Atkins says he doesn’t want me to swim in the lake. He asks a rhetorical question: “What if you have a seizure in the water?”
I weigh my options, and after a few days, I decide I will not cancel. I am going to swim my 1.2 miles. I call the organizers of the race and ask for help in securing a guide who can swim next to me in the lake and make sure I’m safe. A volunteer involved in the logistics of the triathlon, Daniel DeHoyos, calls me and offers to swim with me. “It would be my honor,” he says. “I’ve read your essay in the New York Times. What an extraordinary journey you’ve gone through.” Witek also rushes in to help, offering to join me the day before the competition for the training swim that competitors take to scout out the route.
The race is scheduled for Sunday, June 4—Kasia’s birthday—and bad weather is in the forecast. On Saturday, June 3, Mirek and I make our way north by car from Virginia to Connecticut. Gray clouds roll in and a light drizzle falls. It’s becoming colder and colder. That afternoon, we reach Waterbury, Connecticut, and check into the Hampton Inn. Both Mirek and I are anxious about the potential hazards that tomorrow may bring: hilly roads slippery with rain; cold lake water that could trigger my seizures; the long distances with significant physical challenges that we each will have to endure. But we continue forward on our path of no return, and we try our strength that afternoon in training runs along the triathlon route. We drive to nearby Quassy Amusement Park. Kasia meets us there, and she and Mirek quickly disappear into the hills on their bikes. Witek has just arrived from Pittsburgh, and, accompanied by my son, I dip into the water.
I am wearing a long-sleeved wetsuit. The water is not that cold! It’s fragrant and sweet. The lake is choppy with light waves but so beautiful, framed by the green forest up to the horizon, where mountains rise. My swim with Witek—we do a couple hundred yards of steady, purposeful strokes—is delightful. When Mirek and Kasia return from their bike ride, they tell us it was a bit scary—the roads are treacherous, with sharp inclines and declines, and wet from recent rains, but at least now they know what to expect tomorrow.
That night, still anxious about our fate, Mirek and I cannot sleep. By 4:30 a.m., with the sounds of other Quassy competitors awakening in the room above us and stirring in the halls outside, we get up and get ready. After a light breakfast, we drive to the lake, arriving shortly after sunrise and getting a good spot at the already crowded parking lot at the lake.
Last night’s rain has stopped, and the morning is chilly but calm. The first rays of sun emerge from the clouds and color the lake with a golden hue. The water surface looks like honey; smooth, undisturbed, glistening in the morning light. We gather our gear and head toward our positions. The swim is
