I’m not the only one who’s baffled by how this visit is going. I will learn much later that, as I’m sequestered upstairs on this late spring day, Jake and Kasia, downstairs in the kitchen, are talking about me, quietly so I can’t hear them. They’re both surprised by the way I snapped at Sebastian, to whom I’m always so loving. While I never fail to speak my mind, I’m also reflexively warm and affectionate toward my family. They now find me distant and anxious, and my obsession with the train puzzles them. They can’t figure out what’s going on.
Kasia thinks it must be the anxiety of the experimental treatment and the horror of facing my own mortality. Maybe I’m depressed, she speculates. But Jake isn’t so sure. I’ve had brushes with death before, he notes, but I was always open and vulnerable and shared with them my fears and emotions. This feels off, they agree.
It may be obvious to them that I’m acting strangely but I can’t see that my behavior is unusual. Nor can I see the confusion and suffering it is causing. Upstairs in the guest room, I’m in my own world, fixated on their poor treatment of me and the gross incompetence of the American railway system.
What’s wrong with all of them? Kasia is not being as warm as she usually is. The boys are too noisy—they’re getting spoiled. Amtrak sucks!
My headache is back. This damned heat.
Compared to the itching and other side effects of immunotherapy, the pain in my head feels like a minor inconvenience. Still, I called the nurse at Georgetown yesterday, just to be sure. But when I described it as mild and intermittent, we decided it wasn’t a big worry, although she asked me to keep an eye on it. It’s certainly not the kind of severe or sudden headache that would set off alarm bells for me, Kasia, or my doctors. I’ve soldiered through much worse, I think—and I fail to see it as a warning sign.
I don’t realize it, and no one around me does either, but deep inside my brain, a full-scale war has erupted. The tumors that were radiated are shedding dead cells and creating waste and necrotic—or dead—tissue. These old tumors are also under attack by immunotherapy, as are the three new tumors that Dr. Aizer found shortly before I was to enter the clinical trial. Mortally wounded by my modified T cells, the cancer cells from the six tumors found between January and April are like tiny dead bodies. They must be broken up into smaller particles and removed from my brain through the blood and lymphatic systems. Throughout my brain, the tissues are inflamed and swollen from the metastases and the double assault of radiation and immunotherapy. What’s more, my blood-brain barrier—which normally prevents circulating toxins and other substances from entering the brain—has become disrupted by immunotherapy and is leaking fluids through small vessels and capillaries. The fluids are pooling in my brain, irritating the brain tissue and causing it to swell, a condition called vasogenic edema.
All of this is wreaking havoc on my brain, just as my behavior is wreaking havoc on my family. Although I knew I could pay a heavy price for the chance to live, I had no idea how high the cost would be. My brain—in particular my frontal lobe, which Dr. Aizer was especially worried about because it controls higher cognitive functions—is a deadly battlefield.
And my life is in serious jeopardy. Composed of hard bones, the skull is not flexible; it can’t expand outward to release pressure in the brain. When the brain swells, there’s only one place it can go: the foramen magnum, the hole in the base of the skull through which the brain stem exits into the spinal cord. The most primitive part of the brain, the brain stem controls primal functions including respiration, heart rate, and blood pressure. If the brain stem is squeezed by swelling or is otherwise injured, a person can go into cardiopulmonary arrest—the heart and breathing stop—and die.
If I could have recognized that my frontal lobe was under attack and the effect it was having on my personality, I would perhaps have seen some parallels with the famous case of Phineas Gage, a railroad worker who suffered a horrific injury in the mid-nineteenth century. Gage’s personal tragedy marked a turning point in the study of the brain. He had been using a long iron rod to pound blasting powder into a mass of rock when the explosive suddenly went off, sending the rod shooting through his head like a javelin. It entered his left cheek and passed through the left side of his brain, obliterating much of his frontal lobe, then exited through the top of his skull and landed some eighty feet from where Gage stood. Incredibly, the twenty-five-year-old survived, living for another eleven years with a huge hole in his head—and with dramatic changes in his personality. Once a likable guy, he began to swear constantly, couldn’t follow through on basic tasks, and seemed to care about no one but himself. His behavior grew so bad that he was fired, after which he lived a peripatetic existence, ultimately perishing after a series of convulsions that may or may not have been connected to his devastating injury.
Gage’s misfortune taught us something critical about the connection between the frontal lobe and the mind—although not the lesson that was assumed at the time. Contemporary scientists theorized that the portions of Gage’s brain that were destroyed in the accident were responsible for controlling his personality, but we now know the truth is more complicated. Emotions, which form the foundations of our personalities, are not contained in a single brain region, as once believed, but rather are distributed throughout the brain in a complex network that we don’t yet fully understand.
It is clear, nevertheless, that the frontal lobe is intricately connected
