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 neighborhood 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 favorite smoothies, the glasses I filled with a steady stream of calories, were unappetizing.
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 strategized 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 maximizing 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.
“So like him!” his mother said, smiling.
The next day, Sunday, we hoped for a continuation of the calm weekend. If Paul felt well enough, we would attend church, then take Cady and her cousin to the baby swings at the park up the hill. We’d continue to absorb the recent painful news, share the sorrow, savor our time together.
But instead, time sped up.
Early Sunday morning, I stroked Paul’s forehead and found it scorching with fever, 104 degrees, though he was relatively comfortable and free of other new symptoms. We made it in and out of the emergency room within a few hours, Paul’s father and Suman with us, returning home to the rest of the family after starting antibiotics in case of pneumonia (Paul’s chest X-ray was dense with tumors, which could obscure an infection). But was this, instead, the cancer progressing rapidly? Paul napped comfortably in the afternoon, but he was gravely ill. I started to cry as I watched him sleep, then crept out to our living room, where his father’s tears joined mine. I already missed him.
Sunday evening, Paul’s condition worsened abruptly. He sat on the edge of our bed, struggling to breathe—a startling change. I called an ambulance. When we reentered the emergency room, Paul on a gurney this time, his parents close behind us, he turned toward me and whispered, “This might be how it ends.”
“I’m here with you,” I said.
The hospital staff greeted Paul warmly, as always. But they moved quickly once they saw his condition. After initial testing, they placed a mask over his nose and mouth to help his breathing via BiPAP, a breathing support system that supplied a strong mechanized flow of air each time he inhaled, doing much of the work of breathing for him. Though it helps with respiratory mechanics, BiPAP can be hard work for a patient—noisy and forceful, blowing one’s lips apart with each breath like those of a dog with its head out a car window. I stood close, leaning over the gurney, my hand in Paul’s as the steady whoosh, whoosh of the machine began.
Paul’s blood carbon dioxide level was critically high, indicating that the work of breathing was overwhelming him. Blood tests suggested that some of the excess carbon dioxide had been accumulating over days to weeks, as his lung disease and debility had advanced. Because his brain had slowly become acclimated to higher-than-normal levels of carbon dioxide, he remained lucid. He observed. He understood, as a physician, the ominous test results. I understood them, too, walking behind him as he was wheeled to an intensive-care room, one where so many of his own patients had struggled before or after neurosurgery, their families assembled in vinyl chairs by their bedsides. “Will I need to be intubated?” he asked me between BiPAP breaths when we arrived. “Should I be intubated?”
Through the night, Paul discussed that question in a series of conversations with his physicians, his family, and then just me. Around midnight, the critical-care attending, a longtime mentor to Paul, came in to discuss treatment options with the family. BiPAP was a temporary solution, he said. The only remaining intervention would be for Paul to be intubated—put on a ventilator. Was that what he wanted?
The key question quickly came into view: Could the sudden respiratory failure be reversed?