This article by Dan Barry was published in the New York Times the other day and I thought it was wonderful, worth passing on to those of you interested in human nature as well as the effects of serious illness and chemotherapy.
My Brain on Chemo: Alive and Alert
Within the chemotherapy alumni corps there exists a mutual respect not unlike the bond shared by veterans of war. Sometimes that respect is silently conveyed; not everyone wants to talk about it. And sometimes it is shared in the shorthand of the battle-hardened.
Cisplatin, fluorouracil, Drano,
Borax … .
The usual: nausea, vomiting, hair loss. And the toes are still numb.
At this point the two chemo alums may begin to sense a phantom metallic taste at the back of their throat, a taste sometimes prompted by the intravenous infusion of the corrosive chemicals intended to save their lives. A strong drink might be in order; maybe two.
With that first, taste-altering sip, the two might begin to discuss another side effect that has received attention lately, the one rudely called “chemo brain”: the cognitive fogginess that some patients experience after completing their regimen. That fogginess does not always completely lift, and oncologists are now taking seriously what they might once have dismissed as a complaint rooted in advanced age or cancer fatigue.
For me, reading about chemo brain has resurrected that faint taste of metal. I underwent chemotherapy in 1999 and again in 2004, thanks to a profoundly unwelcome recurrence. Depending on one’s perspective, I was both unfortunate and fortunate. Unfortunate in that I endured all the concomitant fears and indignities, twice. Fortunate in that I had the option of chemotherapy, twice. Not all cancers respond; not everyone is so lucky.
I experienced all the typical side effects. Nausea: for several days at a time, though vomiting sometimes broke the monotony. Hair loss: I was balding anyway, so chemo saved me from comb-over delusions. Neuropathy: even now, my toes feel as if they were wrapped in cotton.
And, I now think, chemo brain – but a form that seems to be the common definition’s opposite. My self-diagnosis is that I had a pre-existing case of fogginess that lifted during and immediately after my chemotherapy regimen: I suddenly experienced acute clarity. Then, as the effects and memory of chemotherapy faded, my confusion returned. Twice.
In 1999, before the diagnosis of cancer and the prognosis of let’s hope for the best, I was enveloped in the haze of the everyday. Rather than rejoicing in a loving wife, a daughter not yet 2, a job I enjoyed – in being, simply, 41 – I created felonies out of matters not worth a summons. Traffic jams. Work conflicts. No Vienna Fingers in the cupboard. Felonies all.
Cancer, as is often said, tends to focus the mind. But my diagnosis hovered in the theoretical until the moment I began the first of six rounds of chemotherapy, each one requiring a five-day hospital stay. The nurse hung bags of clear, innocent-looking liquid from an IV pole, found a plump vein along my right arm – and the fog slowly lifted.
Sickened by the mere smell of food, I suddenly saw the wonder in the most common foods: an egg, a hard-boiled egg. Imprisoned and essentially chained to an IV pole, I would stare out my hospital room window at the people below, and feel a rush of the purest envy for their routine pursuits. Imagining the summer night air blowing cool through sweat-dampened shirts, I’d think how good a $3 ice cream would taste right about now, or a $5 beer, and how nice it would be to watch a baseball game of no consequence.
Men acting like boys, hitting, throwing, running on grass. I used to play baseball.
In the morning, after urinating away the remnants of poisons pumped into me, I would roll my IV-pole partner back to the window and study again the people below, moving, hustling, ambling, to jobs, to appointments, to a diner, maybe, for one of the fried-egg sandwiches served countless times every morning in Manhattan.
Gradually, from midsummer to late fall, the chemotherapy transformed me into a bald guy whose pallor was offset only by the hint of terror in his eyes. But the chemo also wiped away the muddle, revealing the world in all its mundane glory. I won’t tell you that I wept at the sight of a puppy. But I did linger over my sleeping daughter to watch her tiny chest rise and fall. I did savor the complexities of a simple olive. I did notice fireflies, those dancing night sparks I had long ago stopped seeing.
After the chemotherapy, radiation and a few weeks to allow things to settle down, as my doctor put it, I was declared “clean” in February 2000. Never again, I vowed, would I take these simple things for granted. I was blind, but now I see.
The fog, of course, returned as the effects and memory of chemo faded, no matter that my wife and I were now blessed with two daughters. How I hated traffic jams. And the Vienna Fingers! Who ate the last Vienna Finger?
Then, in the late spring of 2004, probably while I was railing about something eminently unimportant, my cancer impolitely returned. Once again I felt the frigid breath of mortality at my neck. I also felt like a fool. What is the use of surviving cancer if you don’t learn from it? Are improved by it? Am I so thick that I need to receive the life-is-precious message twice?
I returned to Sloan-Kettering for more chemotherapy and more of the same side effects – including my own manifestation of chemo brain. Fog lifted, world revealed.
After the chemotherapy came major surgery, which provided the exclamation point to whatever chemo was trying to tell me. Once again I was declared clean. And this time, by God! This time!
I became a walking platitude, telling friends without a trace of irony to live every day as though it were their last. Because, man, I’ve been there. And if I weren’t so repressed I’d give you a hug.
Slowly, insidiously, the fog of the everyday has returned to enshroud me. It came in wispy strips, a little more, then a little more, wrapping me like a mummy. Just the other day, in the car with my wife and my two daughters, I began railing about being stuck in a traffic jam.
Perspective, my wife said. Perspective.
I could not hear her. You see, I’m struggling with this pre-existing human condition.
Dan Barry writes the “This Land” column in The New York Times.