In which a brain tumor makes an uninvited appearance

For about the last 6 months or so, from July 2022 until February of this year, I have been a patient in a drug trial at MD Anderson in Houston testing two brand-new, experimental drugs—on long, long odds—for as long as they might have a positive effect. It was a hard decision: Even as I ran out of options on the traditional chemo circuit, it was difficult to imagine crossing my fingers and betting on the wing-and-a-prayer of an unproven treatment. And yet, I volunteered …like they do in the movies.

90% of Phase 1 clinical trials fail. But mine did not, at least not at first. The drugs actually worked, in profound and almost miraculous ways. Lab results confirmed it. Tumors in my lungs shrank by measurable margins. There was evidence on scans. I could breathe in a way that I had not noticed I was missing. So much amazing air. Doctors smiled and nodded; there was a sense that this new drug was revolutionary.

Revolutionary it turned out to be, as in mutinous. Drug 1, the “burly drug” in my experimental cocktail, gave me body-stomping ulcerative colitis that was life-threatening, so the trial sponsors  discontinued it. I was annoyed that I was not allowed to risk my “health,” (this petri dish of a body actually belongs to me), but Harry and I commit to Drug 2, which seems to bully my tumors into some sort of neurotic failure to thrive. And might do more. I go back and forth to Texas over the winter, hoping that Drug 2 marinates in immunotherapy stew and learns some new tricks. It is that promising and smart.

I become a medical survivalist, a different kind of patient. I tumble out of Sylva at 4 am for a 6 am flight from Asheville to Atlanta; Atlanta to Houston; Uber to the hospital. Thank god for coffee. Without fail, I make a required 36-hour window to get a 1-hour infusion of an experimental drug with my name and DOB on it. Nurses cross t’s; dot i’s, watch over me. They bring me warm blankets, a turkey sandwich and the remote. And then I walk out of MD Anderson and reverse course: Uber; an airport hotel so close to the runway the sheets flutter when the planes take off; Home. The scans show stasis: All tumors are quiet. This is great news. But we hope for a scan that shows the tumors have started to shrink again; I feel sick with hope. Is there not one last favor to call in? Villanelle, are you busy?

In early February, I was at home in North Carolina. In the living room standing by the front window. I am sure I was clucking over the houseplants: The ivy turns brown so suddenly, and the peace plant is perennially suicidal. Looking out along the driveway, I noticed a creeping fog whispering around the edges of my vision. I felt my skull. It had its reassuring form, its ridges were intact, the bones were sharp. I knew who I was, I knew where I was, but I also knew that something had slipped in my head. All that gray matter tucked up under the hood, once solidly substantial, seemed to shift. Memory and references were muddled. Words were strange and unruly. I couldn’t write. The letter ‘g” was oddly confusing. A cold white panic rushed in.

At our local emergency room, the one down the road where the reviews claim there are chickens in the hallways, I get a head CT. In what can only be described as a cruel betrayal and the most cowardly of moves, the cancer has left my lungs to fend for themselves and wandered off on an easier over-cranial road trip. Like a goat, it has rambled over to squat and bray uninvited in my brain. It is the worst news imaginable. It is also impertinent. This is not a barnyard. 

You might reasonably assume that there’s not much more I can write about after this new development. How much thinking or writing or saying is going to get done with a middling-size tumor in the left parietal occipital region, the part of the brain responsible for cognition, language, and sense information? I still have chemo fog from years ago, and now I have brain burps. It is the last insult. It really is.

As the dandelions started to emerge, just a few weeks ago, Cyberknife radiation techs built me an elaborate plastic framework in the shape of my head. They buckled me onto a gurney like a medieval witch, gently stuffed my ears with cotton, battened me down with pillows and covered me with a warm blanket. The state-of-the-art radiation machine is a huge white tube that approaches, recedes and then seems to grind away off stage somewhere to be replaced by another more reassuring sound: Old uneven iron wheels rolling around on wood boards. There is drumming far away as well. Something sighs and hurumphs close by. I open my eyes, face-to-face with an old wooden textile spool, an antique bobbin that I recognize from a dear friend’s workshop. It weaves in on a long rope to hum and chirp and chat. These naps are the best I’ve ever had.

The nurse nudges me awake, helps me sit up. The radiologist reminds me that the steroid regimen is challenging. There will be nights of infuriating insomnia and weeks of crushing exhaustion. And then he waves us down the hall and we are out the door, into the rain and the dark and rush hour. We have no appointments scheduled. We are cut loose—from doctors, testing, blood draws— until my brain heals, and there is every indication that it just might do that.

Our lives return in manageable pieces every day. There is the road we were on before this detour, but that is not the road we are on now. This Spring, we’ll drink the delicious local beer, watch the mountains Green Up, weave ourselves back into the fabric of our marriage and our lives, and pull our friends and family a little closer. We’ll have a bit of a rest. And then we’ll start off in search of the future, imperfect, again.