Going on when going on is impossible
When Paul Kalanithi got news that he had a cancer that kills 80 per cent of patients within two years he did what most folks do when they get a death sentence — he sought certainty where there is none.
Dr Kalanithi was an Indian-American writer and neurosurgeon who died of metastatic lung cancer in 2015. He was 37 and left behind a wife and baby daughter.
A gifted communicator, Kalanithi conveyed in intimate detail how it felt to be ‘terminal’ and what he wanted to do in the precious time he had before he died in a poignant New York Times essay titled ‘How long have I got left?’
He understood his situation from two sides; as a doctor and patient. As a doctor he’d always tried to be honest but suitably vague with terminal patients by giving them realistic prognoses while offering a glimmer of hope.
He’d use phrases like ‘days to weeks, weeks to months, months to a few years,’ knowing that most patients would end up Google-ing survival numbers on the Internet as a way to parse the anxiety gap that rises between life-expectancy numbers and one’s hopes of beating the odds.
So when his diagnosis came he asked his doctor how long he had to live. He hoped that she’d be frank and honest, since she was a fellow medical colleague, that she’d appreaciate that he understood medical statistics and the grim facts of his disease. But no, she refused point blank to give him any survival numbers or prognostications. Suddenly, and unexpectedly, he was dropped into descent, into the unknown, into the the audacious humanity of simply being another terminal patient.
There would be no cure. He would die of the disease that afflicted him, and all he could do was adapt to his new and changing circumstances.
His medical reading suggested he might have weeks, maybe months, even a year. Nothing was certain but the twist was this. While he had a disease that would kill him, this fact changed everything but weirdly, it changed nothing.
Before cancer, he knew he’d die one day but didn’t know when. Being told he was terminal, he knew he’d die one day but didn’t know when — only now he knew it acutely. It was like the Zen riddle of enlightenment: ‘Before enlightenment chop wood, carry water. After enlightenment chop wood, carry water.’
Kalanithi didn’t know whether to make funeral arrangements, write the book he’d planned, or carry on being a doctor. What he came to, eventually, was that knowing how much time he had remaining wouldn’t remedy the terror he felt in facing death — a death that couldn’t be put off till later. A death but that had to be faced today, if necessary.
Unwanted questions flooded in, unheeded. Would he submit to his prognosis? Would he bow to life’s transience while still seeking a way to ‘go on’ when going on was impossible? Would he abandon hope and navigate towards some kind of existential authenticity, knowing that he could be blown off course, smashed to oblivion, and drowned before he found land? Would he come willingly to the shore of his mortal life with equanimity? Would he look across the river of life to the elders who’d gone before, to the ancients who were ready to receive his spirit and care for him?
Sooner or later this is the journey we’re all called to. For some it comes in the form of a ‘health scare’ like an abnormal pap smear or high PSA test result. Others get it when they witness a tragedy like a fatal motor vehicle accident at close quarters. Some get the news in the form of a genetic test indicating an elevated risk for a deadly or degenerative brain disease.
Like Paul Kalanithi, being diagnosed with an incurable cancer has brought me to the same questions, the foremost being: how to go on when going on is impossible? This is a question I ask myself each day.
Let me explain.
In the five plus years since I learned that I had multiple myeloma I’ve had an autologous stem cell transplant and five kinds of chemo drugs. I’m now on my sixth. The autologous stem-cell transplant and subsequent chemo drugs worked brilliantly but eventually stopped cancer doing what it does: multiplying and causing chaos. This roller coaster, common among cancer patients, might be a blessing or a curse, depending on one’s point of view.
The curse, or mind-fuck (as I privately call it) is this. I take a blood test each month to track cancer. My doctor, Stephen and I consult. We plot and conspire against the enemy. But the odds are inconceivably high. Here and now, in the second decade of the 21st century, medical sciences as a group, including oncogenic and relevant immunotherapy are in their infancy.
When we start a new drug, cancer starts to diminish. This can last for as long as a year, though usually less until cancer gets its way again.
But hoping or imagining that drugs will stop cancer is a fool’s errand and a recipe for grief. Why? Because myeloma, and the vast majority of cancers are incurable and good evidence shows that all drugs eventually fail to stop it.
Some cancer patients don’t see the point of going on. For them going on is impossible. What’s the point, right? Why put up with the withering fatigue and nausea? Why persist with the endless tests and needles and hospital admissions? Why live a little longer when living just means more surgery, more radiation and more chemo before death comes stalking? So they stop treatment. They succumb to cancer, and they die.
Me? For now, I’m taking the drugs, enduring the side effects and viewing the results with equanimity. I take the injections and expect nothing. I swallow the pills and think on it no more. I do what’s indicated and marvel at the dawn of every new day. This is the blessing and for me, the only way to go on when going on seems impossible.
And with an uncertain future and no prognosis, one phrase keeps provoking me: ‘Today is a good day to die for all the things of my life are present,’ a line attributed to the Oglala Lakota chief Low Dog, who fought with Sitting Bull against US General Custer’s troops at the Battle of Little Bighorn in 1876.
For me the quote means I am called to live in the present with an open heart so that (my) living and dying are uncrowded by fears, regrets or denials.
Paul Kalanithi, When Breath Becomes Air, Random House, 2016.
Dan Gaffney MA, MPH is a teacher and author. This is an excerpt from his book and podcast series, ‘Journey Home — Essays on Living and Dying’ was published in November 2019.