1000 days of thriving with cancer. Here’s how.

I call it “the sniffles.”

An oncologist told me that I have the “King Kong of blood cancers.”

I call it “the sniffles,” but am not deluded about its threat. Acute myeloid leukemia (AML) is the most stubborn of blood cancers to cure, and alas, has the shortest prognosis. People die within days of diagnosis.

Or, they live for weeks, months, years, decades.

As of August 5, 2017, I have thrived with AML for 1,000 days, or 2¾ years. I am uncured; a bone marrow transplant failed, a second round of chemo failed, as have four clinical trials. I should be long gone.

CountingUpTheDays_small
I count up the days of life, post-diagnosis. Here, I mark 1000. What I never did was count down the days I had left (which were as low as 30, at one point). That’s Edgar Allen Poe morbid.

But a few days ago, a wonderful nurse at Dana Farber Cancer Institute in Boston told me that, after years on the job, she knows a cancer sufferer on sight; but that “I’d never guess you’re one of them.”

I blushed. Comments like those please me, of course. But to be proud of my survival would be like the spoiled teenager who thinks his dad’s Rolls Royce is his own. These 1,000 days are 1,000 gifts of God (and of the healers He anoints). After 1,000 miracles, I trust Him to give me decades.

I promise, I won’t try to convert you in the paragraphs that follow, or ever. My faith has helped me survive, and does the same for Jews, Buddhists, Muslims and Hindus as well. And atheists thrive with and overcome cancer, in whichever way they seek a right mindset.

Following are a few lessons I’ve learned, and I hope they help you navigate your survival.

I wish you Godspeed.

Defy cancer; but do not fight it.

Far be it from me to condemn soldiery, and the courage it takes to do battle. But my experience is, to “fight,” “do battle with” or “kill” cancer is not the right mindset to survive it.

In a fight, someone loses. In battle, sometimes the tyrant wins. Besides which, fights and battles are exhausting, and raise both cortisol (the “stress hormone”) and adrenaline levels in the blood, creating an environment in which cancer thrives.1

The Mahatma Gandhi won Indian independence without fighting. Instead, he defied British Imperial rule, with such actions as leading his people to the Indian Ocean to make salt—something they had done for millennia, but which was co-opted by the British. Never did Gandhi take up arms against Britain, and he famously abandoned his resistance when his followers were tempted into violence. His was no passive resistance; it was active defiance.

Gandhi’s touchstone was Jesus Christ. He too, never took up arms, even preaching “Put up again thy sword into his place: for all they that take the sword shall perish with the sword.” (Matthew 26:52.)

Make no covenant with your disease.

In the spirit of defiance, the “Catholic Prayer to the Divine Physician” puts it wonderfully well:

“Destroy all the word curses that have been spoken against my health…I break every agreement that I have made with my sickness and disease.”

Truth to tell, I never made any agreement with AML leukemia. I should have died two years ago (for I’d been given less than six months). An oncologist told me “You should be in a wheelchair with an oxygen tank,” and another, that I should be unable to work. (I have no choice but to work. Freelance writers get no disability.)

I remain willfully ignorant of how I should feel, what capabilities I should have lost, how long I should live. None of these is a law.

Trust in science; but not in statistics.

“Wait a minute! Are you saying you don’t trust medical science?”

Of course I do. Else, I wouldn’t waste my time at Dana Farber, getting chemo and awaiting the next clinical trial.

No law of science or of averages compels you to be average.

But all science is not the same. In chemistry, once a result is proven, it is flawlessly reproducible, under identical conditions.

Medical science is far more inexact, with unpredictable variables. Drug effects vary wildly among individuals; so do prognoses, which follow a bell curve, like the one below (just an example, and not specific to any cancer). Imagine that the horizontal axis represents ten years, and the vertical axis, the number of people who die at a given point in those ten years. Here, the median death occurs at about 1 year. But—there are outliers who die sooner, and many more who die later.

Left-leaning bell curve
AML survival has a left-leaning bell curve, like this one. Alas – the peak is where most perish. To the right are those who surpass the norm.

If a physician tells you “You have less than six months,” that really means, “The law of averages says you have six months.”

But no law—not of science or of averages—compels you to be average.

Never mind how you got it. Get busy surviving.

Of course you want to place blame for this great unfairness. But blame is dispiriting. You’ll blame yourself (for using chemical cleaners, eating crummy food), or someone else (and yourself in turn, for allowing that person to give you cancer).

OK, if you’ve smoked filterless Chesterfields for decades and develop throat cancer, you know the cause. A Vietnam veteran friend knows that Agent Orange left him with lymphoma. Yes, you could have quit smoking sooner, and that soldier could have dodged the draft. But millions live into their 90s using cleaners with carcinogenic benzene in them. And what could the six-year-old with leukemia have done differently?

Be especially careful of blaming someone for your cancer: “Childhood bullies scarred me for life and they’re killing me now,” or “I let my husband cause this with years of emotional abuse.”

To blame someone is to grant the power of life and death to people which they don’t have. I’ve heard no conclusive, or even compelling evidence linking anger or depression with cancer. (I won’t discount it, as research is ongoing.)

But consider deathcamp survivors, who faced unimaginable injustice—the loss of homes, loved ones murdered, ceaseless brutality—with no possible remedy. Or soldiers with PTSD, or people whose lives were derailed by sexual assault. If any study has discovered a hard link between those experiences and cancer, we’d know it.

For the unafflicted, I’m not saying “Don’t even try to avoid it.” Of course, use natural cleaning agents, eat less processed food, use sunscreen. And find peace. I’m unconvinced of a link between misery and cancer, but can we take that chance? Your diligence will probably reward you. (But alas, maybe not.)

So, never mind the cause – likely, it is a genetic mutation, as random an occurrence as where in the pasture a cow leaves its droppings. If years of drinking and smoking like Humphrey Bogart triggered my leukemia, so be it. Self loathing won’t heal it. If processed foods truly contributed to your child’s cancer—despite all her classmates enjoying Goldfish crackers and boxed juices—very well.

What can we do now?

Know your reasons to live. Reckon them one by one.

I welcome the afterlife, of course. But not yet.

In the spirit of defiance, an aunt of my wife, Sadie Mae, said (at her own husband’s funeral), “I told God, ‘I’m not going.’” She had had two brain aneurysms in her forties; and yet had young children and a husband who had no idea how to manage a household. She would go when it was convenient to her. Meanwhile, she got busy relearning mobility, through hundreds of hours of physical therapy

I compiled a long list of reasons to live, which I add to, daily. Among them:

  • My Sadie Mae and I found each other in our forties, have had but a decade together, and I refuse to leave her.
  • I have yet to publish a novel, and don’t want to be remembered as an “aspiring novelist.” They aren’t remembered, and John Steinbeck is.
  • My big-eyed, sweet greyhound ‘Teo, who walked around like a ghost when I was hospitalized for eight weeks. I will not break his heart.
  • Neither will I predecease my parents, and break their hearts.
  • I cannot stop providing for my wife and pup.

Finally—and I have AML to “thank” for this—I love life. Life on Earth. As I never have before.

As I said above, Sadie Mae and I found each other in our forties. I thought she was all the contentment I could hope for; but lasting contentment came after being diagnosed. That is when we began to rise an hour earlier, to begin the day with French-pressed coffee and one another. Every day I am promised deep contentment, upon waking. No day was like that, until now.

As a Christian, I welcome the afterlife, of course. But not yet. As King David asked of God, “What profit is there in my blood…Shall the dust praise you? Shall it declare your truth?” (Psalm 30:9.) It cannot. But I can, if I stay here.

Lord God, thy will be done. But my cure is my will. I pray thee, make it yours as well.

Godspeed.

1David Servan-Schreiber, MD. “Cancer’s Weaknesses,” in Anticancer: A New Way of Life. New York: Viking, 2009.