AUL DIED ON MONDAY, March 9, 2015, surrounded by his family, in a hospital bed roughly two hundred yards from the labor and delivery ward where our daughter, Cady, had entered the world eight months before.
Between Cady’s birth and Paul’s death, if you’d seen us sucking on ribs at our local barbecue restaurant and smiling over a shared beer, a dark-haired baby with long eyelashes napping in her stroller beside us, you’d never have guessed that Paul likely had less than a year to live, nor that we understood that.
It was around Cady’s first Christmas, when she was five months old, that Paul’s cancer began to resist the third-line drugs recommended after Tarceva and then chemotherapy had stopped working.
Cady tried her first solid food during that holiday season, snug in candy-cane-striped pajamas, gumming mashed yams as family gathered at Paul’s childhood home in Kingman, Arizona, the house aglow with candles and chatter.
His strength waned over the following months, but we continued to experience joyful moments, even in the midst of our sorrow. We hosted cozy dinner parties, held each other at night, and delighted in our daughter’s bright eyes and calm nature.
And, of course, Paul wrote, reclining in his armchair, wrapped in a warm fleece blanket. In his final months, he was singularly focused on finishing this book.
As winter turned to spring, the saucer magnolias in our neighbourhood bloomed large and pink, but Paul’s health was declining rapidly. By late February, he needed supplemental oxygen to keep his breathing comfortable.
I was adding his untouched lunch to the trash can atop his untouched breakfast, and a few hours later I’d add an untouched dinner to the pile. He used to love my breakfast sandwiches—egg, sausage, and cheese on a roll—but with his waning appetite we’d changed to eggs and toast, then just eggs, until even those became intolerable.
Even his favourite smoothies, the glasses I filled with a steady stream of calories, were unappetising. Bedtime crept earlier, Paul’s voice slurred intermittently, and his nausea became unremitting.
A CT scan and brain MRI confirmed worsening cancer in Paul’s lungs and new tumors that had landed in his brain, including leptomeningeal carcinomatosis, a rare and lethal infiltration that brought with it a prognosis of only several months and the looming shadow of swift neurologic decline. The news hit Paul hard. He said little, but as a neurosurgeon, he knew what lay ahead.
Although Paul accepted his limited life expectancy, neurologic decline was a new devastation, the prospect of losing meaning and agency agonizing. We strategised with Paul’s oncologist about his top priority: preserving mental acuity as long as possible.
We arranged entry into a clinical trial, consultation with a neuro-oncology specialist, and a visit with his palliative-care team to discuss hospice options, all in service of maximising the quality of his remaining time.
My heart swelled even as I steeled myself, anticipating his suffering, worrying that he had only weeks left—if that. I envisioned his funeral as we held hands. I didn’t know that Paul would die within days.”
We spent Paul’s last Saturday with family in the nest of our living room, Paul holding Cady in his armchair; his father on my nursing glider; his mother and I on sofas nearby.
Paul sang to Cady and bounced her gently in his lap. She grinned widely, oblivious to the tubing that delivered oxygen to his nose.
His world became smaller; I deflected nonfamily visitors, Paul telling me, “I want everyone to know that even if I don’t see them, I love them. I cherish their friendship, and one more glass of Ardbeg won’t change that.”
He didn’t write anything that day. The manuscript for this book was only partially finished, and Paul now knew that he was unlikely to complete it—unlikely to have the stamina, the clarity, the time. To prepare for the clinical trial, Paul had stopped taking the daily targeted-therapy pill that had been insufficiently controlling his cancer.
There was a risk that the cancer might grow rapidly, or “flare,” after he stopped the medication. Therefore, Paul’s oncologist had instructed me to videotape him daily, doing the same task, to track any deficits in his speech or gait.
“April is the cruellest month,” Paul read aloud in the living room that Saturday as I filmed, choosing T. S. Eliot’s The Waste Land as his script. “Mixing memory and desire, stirring / Dull roots with spring rain.” The family chuckled when, though it was not part of the assignment, he set the book facedown on his lap and insisted on reciting from memory.
Excerpt From: Paul Kalanithi. “When Breath Becomes Air.”