This normal life: Defining courage

“Maintenance therapy is probably overtreatment.”

By
December 19, 2018 21:04
4 minute read.
This normal life: Defining courage

‘COURAGE FOR me is not about choosing to jump out of an airplane or bungee jump off a bridge near Kathmandu.’. (photo credit: MAX PIXEL)

 
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The Merriam-Webster dictionary describes courage as “the ability to do something that frightens one.” I’d give it a slightly different definition.

Courage, for me, as I’ve discovered over the past year coping with chronic cancer, is not about choosing to jump out of an airplane or bungee jump off a bridge near Kathmandu. Rather, it’s doing something you really don’t want to do but know you have to.

It was courage I needed when my next immunotherapy appointment came close.

I finished four months of chemotherapy for my follicular lymphoma earlier this year and am officially in remission. Now I need to go in every other month for an IV of biologic “maintenance” treatment to keep the cancer at bay for as long as possible. I’m supposed to do this for two years. It’s not as bad as chemo, but it still comes with side effects.

As the day approached, I became acutely aware of my resistance to going back under the needle. Part of that was just not wanting to feel uncomfortable – not so much the hospital visit but the fatigue and aches and pains that come after. Part was that each trip to the hematology daycare ward reminds me that I have a chronic, incurable cancer that will be with me for the rest of my life.

But there’s also a lingering uncertainty about whether maintenance treatment is worth it.

According to Dr. John Leonard, a lymphoma specialist at Weill Cornell Medicine in New York, only 16 out of 100 patients will see an improvement in PFS (that’s “progression free survival,” the number of years before the disease returns) as a result of the kind of maintenance immunotherapy I’m supposed to be getting.

“Moreover, it makes no difference in overall survival,” Leonard adds. He advises most of his patients these days to skip maintenance and simply “re-treat” when necessary – even if that’s sooner than it might have been if you’re in the lucky 16% group.

Dr. Jonathan Friedberg, chief of hematology-oncology at the University of Rochester Medical Center in Rochester, New York, puts it more plainly. “Maintenance therapy is probably overtreatment.”

I asked my own doctor at Hadassah in Jerusalem. She admitted that “we really don’t know what maintenance therapy does or how,” but she still recommended it. “Sixteen percent is not insignificant.”

AS MY appointment became imminent, I tried to think of other examples of courage that fit my definition, to see whether any of those might provide clarity for the decision in front of me.

The first thing that came to mind was perhaps the complete opposite of healing: war. No sane person ever wants to go to war, but sometimes you have to do it for the health and survival of your nation.

Divorce also is a form of courage. Resistance to this kind of major life change can be overwhelming, but if you’re in the wrong relationship, you know deep down that sometimes the only way to get healthy again is to get out.

Making aliyah takes courage, as well. My wife, Jody, and I planned our immigration to Israel for seven years. Making a life in the Holy Land was part of the shared values we brought to our marriage.


But when the time finally came to move, I kept delaying. My career was in full swing: I had a great job at a software company, I was teaching at San Francisco State University, I’d just finished a term as president of an international professional association. We had friends, community, two cars and savings.

I knew that aliyah would be the healthy thing for our relationship, for our children, for the Jewish people.

“Making these kinds of monumental decisions takes a special kind of faith,” a friend once told me.

“Faith is not something I’m big on,” I joked in return.

“Then call it a ‘leap of faith’ – making an important choice with imperfect information. Gather data, then reevaluate. If it doesn’t work out, you can always go back.”

Melanie Greenberg writes in Psychology Today (August 2012) about six kinds of courage: feeling fear yet choosing to act, following your heart, persevering in the face of adversity, standing up for what is right, letting go of the familiar, and facing suffering with dignity or faith.

At least four of those six are part of my personal definition of courage. (You guess which four.)


IN THE end, though, it was not my cognitive deliberations, an appeal to faith or a pithy article in a pop psychology journal that shone a light on how I should decide. It was an episode of the TV show This Is Us.

One of the main plot points of the popular NBC series is that the father of the family dies when his kids are teenagers. The harrowing experience of losing their father at such a young age impacts much of how they live as adults.

My own kids are all in their 20s, but that’s still young enough that I wouldn’t want to bequeath to them any avoidable trauma.

Sixteen percent may not sound like a lot statistically, but I owe it to my family to do whatever I can to stick around as long as possible.

I might feel like crap, temporarily at least, but I know, too, that my long-term health and the health of everyone around me depend on me mustering up that courage – however I define it.

The writer’s book, Totaled: The Billion-Dollar Crash of the Startup that Took on Big Auto, Big Oil and the World, is available on Amazon and other online booksellers. brianblum.com

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