Death by a thousand cuts
A jolt of fear hit me in the guts as the ‘No caller-ID’ image flashed on my car’s ‘infotainment screen’.
I checked the rear view, changed lanes, knowing I had to answer but not wanting to. I waited a few more rings and took a calming breath as I pressed the green phone symbol.
“Hello, Dan here,” I said cheerily.
“Hello, Dan, it’s John.[i]
Bad news, for sure.
“Hi John, how are you? I smiled and considered the irony of a cancer patient asking after his doctor’s health.
“I’m fine,” he replied. “Can you talk? It sounds like you are driving.”
“Yes, I can talk, I’m on hands free.”
“Okay, good,” he said. “I’ve got your latest blood test results and I’m afraid the light chains are up again from the drop we saw in your previous result. It’s back to 767, which is where it was before the last good result.
I wanted to pull over, curl up, and cry like a baby.
The light chains are proteins made by plasma cells that help to make antibodies that defend against threats such as viruses and bacteria.
Normally, there’s a slight excess of ‘free light chains’ in the blood but if plasma cells turn cancerous, as they had in my case, the plasma cells proliferate and produce a massive excess of light chains.
A low light chain number meant chemo was killing the cancer. A high number meant it wasn’t. I was diagnosed with a blood cancer called multiple myeloma nearly six years ago and my doctor had been tracking my light chains each month from the beginning.
Multiple myeloma causes cancer plasma cells to accumulate in the bone marrow, where they crowd out healthy blood cells. Rather than produce helpful antibodies, the cancer cells produce abnormal proteins that can cause complications.
Lately, my doctor has been asking me to have a blood test every fortnight. Since we’d started on what we thought was a promising drug ten weeks ago, the light chains have refused to budge, and John says he doesn’t want to leave four weeks between testing “in case the light chains get away from us”.
This rollercoaster ride has been up, down and sideways and nearly derailed more times than I can recall. Typically, when we start on a new chemo drug the light chains plummet for up to a year before they plateau and climb again as thedrug’s effectiveness starts to wain and fail. We’ve taken that ride six times with six different drugs in nearly six years. Each time the numbers plateau and climb is a death by a thousand cuts.
More time means more time dying
Myeloma is incurable but treatable. In some patients it can be well managed, but what many don’t know in the beginning is that long-term survival is a Faustian bargain (Faust sold his soul to the devil in exchange for knowledge and power).
Depending on the staging of the disease, average survival is between three and five years. So more life means more treatment. More chemo. More side-effects. More complications, more depression, less autonomy. It means medical tests and medical consults till the day you die, or until you say, “enough, no more”.
Palliative care expert, Stephen Jenkinson puts it like this: “More time, when it finally kicks in, is the rest of a dying person’s life, and the rest of that life will be lived in the never-before-known shadow of the inevitability of their dying.
“For the first time in their lives they will live knowing that they will die from what afflicts them. More time means more time to live their dying.
“It means more symptoms, more drugs for the symptoms, more drugs for the side effects of the first drugs, more weakness and diminishment and dependence to go along with more time with the kids or grandkids or walks in the park with the dog.
“That’s not all it means, not necessarily, but more time almost always means more dying. No one is born, no one walks in the park or sits looking out the window knowing how to die like that, slowly and visibly and knowingly. Very few here on these shores, where death phobia rules, learn how, or want to.” [ii]
Complaining about living longer might seem churlish given that thousands of people die each day from malignant and untreatable diseases. Who wouldn’t want to live a bit longer, given the chance? The “problem” is that success of modern-day medicine has outstripped human consciousness. Few of us are equipped for monthly updates on our cancer status. Not when the updates (up, down, up, down, sideways) stretch into an interminable future with the same endpoint: death.
End of life conversations
Few doctors have end of life conversations with their patients even though they confer a host of benefits. In a large, often-cited study named Coping with Cancer, nearly two-thirds of terminally ill patients said they’d never had a conversation with their doctors about their end-of-life care, despite having just four months to live.[iii]
The study also found that the one in three patients who did have end-of-life conversations with doctors were more likely to accept that their illness was terminal. These patients also voiced a preference for treatments that focused on relieving their pain and discomfort in preference to life-extending therapies.
There were other benefits, too. Patients who had end-of-life conversations with doctors were less likely to be resuscitated, had less depression and worry, and were less likely to end up in an intensive care unit or to have aggressive medical interventions near death, such as intubation and mechanical ventilation.
Also, six months after these patients died, their families were less likely to be depressed and felt more prepared for their loved one’s death than families of patients who didn’t have end-of-life conversations and who endured aggressive medical interventions near death.
Said another way, people who have practical conversations with doctors about their preferences for their end-of-life care seem more likely to die a ‘good death’ while sparing their families a lot of heartache and distress.
These conversations provide opportunities for people to explore and define the kind of care they want as they approach their last days and moments. But they also mean confronting the limits of medical and palliative care and the reality that life is finite — facts that trigger mental and emotional alarm for some.[iv]
So many doctors and patients are understandably cautious when it comes to discussing death. Many avoid or delay these conversations till the last minute, or until it’s too late. But the costs are heartbreaking. If you have any doubts, watch Extremis — a documentary that shows the devastation experienced by dying patients and their families because they didn’t speak up sooner about their life and death choices.
Living with death conversations
Jenkinson said few people with terminal conditions know how to live with the certainty of a delayed death. “No one is born, no one walks in the park or sits looking out the window knowing how to die like that, slowly and visibly and knowingly. Very few here on these shores, where death phobia rules, learn how, or want to.” [v]
Like me, these people face a different dilemma to those with short life expectancies who can benefit from end of life conversations. The certainty of a delayed death combined with regular test results at the behest of well-meaning doctors who want to keep tabs on patients’ disease progression is unprecedented. The ability to generate a nearly continuous stream of medical data by taking regular blood and tissue samples from patients has never been so cheap or easy. But to adapt a line from Churchill’s famous wartime speech, never was so much known by so many for so little. [vi] Doctors have never been so well informed. Pathology labs have never been so busy (or profitable). But never before have patients been such unwitting recipients of so much up-to-date information about their health status. How should we respond to the onslaught?
Stop the war
Feeling scared by this deluge of worrisome medical information is natural, especially for patients with serious, life-ending diseases like cancers and degenerative diseases like motor neuron disease, dementia, and multiple sclerosis.
Some respond by waging war or running away from their life. Frightened by the loss and insecurity brought by disease, they become angry or depressed. They strike out at loved ones and friends. They sabotage themselves or drink too much. Why? To deny their fear. To numb the pain. To escape being so constrained by circumstances they can’t control.
But war’s roots lie in ignorance. Without insight it’s easy to be frightened by life’s transience, which brings change, loss, ageing and death. Facing reality is our first step to ending the war with ourselves and others. Opening our hearts wide enough to feel the slings and arrows is our way home, our path to peace.
The Buddhist monk Achaan Chah put it like this:
“Contemporary society fosters our mental tendency to deny or suppress our awareness of reality. Ours is a society of denial that conditions us to protect ourselves from any direct difficulty and discomfort. We expend enormous energy denying our insecurity, fighting pain, death, and loss, and hiding from the basic truths of the natural world and of our own nature.
“Underneath these ongoing battles, we see pervasive feelings of incompleteness and fear. We see how much our struggle with life has kept our heart closed. When we let go of our battles and open our heart to things as they are, then we come to rest in the present moment.” [vii]
Opening our hearts isn’t easy because it goes against our self-preservation instincts and nobody wants pain in their life if they can avoid it. But aadvising patients about how to accommodate regular updates about their cancer status or loss of memory is something few doctors do, or seem skilled at.
So how do we muster the courage and skill to be vulnerable? How do we foster equanimity when we keep being reminded that we’re dying but not just yet?
Win the peace
Old wisdom says each of us needs to find and dedicate ourselves to a practice that fosters a calm mind and a loving heart. It doesn’t matter what it is so long as it’s truly ours and that it transforms our desire to cut and run into something approaching clear-eyed acceptance and grace.
There are countless ways up the mountain: prayer, meditation, yoga, service to others, art, ceremonial and devotional practices, or maybe some form of therapy. It might mean being the best mother or grandmother you can be. When we choose the one thing that is our true teacher and dedicate ourselves to it, we make the medicine, the alchemy that turns dross into gold.
The Sufi poet Rumi said there is “one thing” in this world that we must never forget to do.
“If you forget everything else and not this, there is nothing to worry about, but if you remember everything else and forget this, then you will have done nothing in your life.
“It is as if a king has sent you to some country to do a task, and you perform a hundred other services, but not the one he sent you to do. So human beings come to this world to do particular work. That work is the purpose, and each is specific to the person.
“If you don’t do it, it’s as though a knife of the finest tempering were nailed into a wall to hang things on. For a penny an iron nail could be bought to serve for that. Remember the deep root of your being, the presence of your lord. Give your life to the one who already owns your breath and your moments.”
Doing “one thing” takes deep commitment. Dogged determination. And a willingness to practice regardless of the difficulties and doubts that arise — as they will — because finally, we’ve made a way for them to do so. That sounds like tough love but it’s much better than that. When we submit to the “deep root” of our being we turn our swords into ploughshares. We become peacemakers. [viii] [ix]
Dan Gaffney is a teacher and author. His book and podcast series, ‘Journey Home — Essays on Living and Dying’ was published in 2019.
[i] Name changed for privacy reasons
[ii] Jenkinson, S (2014) Die Wise: A Manifesto for Sanity and Soul. North Atlantic Books, Berkeley, California, p35
[iii] Wright AA et al (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA, 300(14), pp 1665–1673
[iv] Puri, S (2019). The Lesson of Impermanence, The New York Times, March 9
[v] Jenkinson, S (2014) Op cit, p35
[vi] Churchill, W, August 20, 1940. “Never in the field of human conflict was so much owed by so many to so few”. British House of Commons, Hansard, 5th Series, Volume 364, cc 1159
[vii] Quoted in Kornfield, J, 2002. A Path With Heart. Rider, an imprint of Ebury Publishing.
[viii] Joel 3:10. “Beat your plowshares into swords, and your pruning hooks into spears; let the weakling say, “I am a warrior.”
[ix] The Yoga Sūtras 2:35. “In the presence of one firmly established in nonviolence, all hostilities cease”.
