Everything was worked out in the battle plan against my lymphoma. Or so I thought.
I was scheduled to start a combination of chemo and immunotherapy the coming Sunday morning. The chemo would zap the cancer cells that had grown mainly on the lymph nodes around the back of my abdomen, while the immunotherapy would recruit my body’s own defenses to target a specific B-cell protein gone rogue.
The remission rates were impressive with many people reporting up to 10 years of PFS – that’s “progression-free survival,” medical speak for the number of years without disease before the cancer returns.
My particular cancer is called follicular lymphoma. It’s not currently curable but is increasingly being seen as a chronic condition, like diabetes or high blood pressure. As long as you stick to your treatment and meds, you can live a relatively normal life.
“The chemo is not like you think from the movies,” a friend, who has the same kind of lymphoma as me, reassured me. “You don’t lose your hair. I barely had any side effects and they have these great pills that knock out the nausea in 10 minutes. That’s if you even get sick.”
All things considered, I was feeling pretty positive – raring to go and ready to beat the beast in my body.
Then I got a second opinion.
I met with one of the leading hematologists in the country, the kind of expert whose name, when you Google hematologists in Israel, is one of the first to pop up.
“You don’t need chemo,” he pronounced calmly in his Tel Aviv office, after reviewing my CT scans, blood tests and pathology results. “We can treat you with just immunotherapy.”
Now, despite everything I’d previously learned about how chemo’s not so terrible, it’s still, well, chemo, and if I could avoid taking on an unnecessary toxic burden, that seemed a better alternative.
“He says I don’t need chemo!” I excitedly told my main doctor back in Jerusalem.
“I’m not so sure,” she countered, and in her hesitation, my balloon burst into a thousand needles searching for a vein in vain. “Doing just immunotherapy usually results in a much shorter period of PFS. But it’s your decision.”
How do you decide something like that, with implications that go far beyond such pedestrian daily dilemmas as choosing a particular restaurant or deciding between buying an electric or gasoline-powered car?
My dilemma was one we all experience at times: How much risk and uncertainty can you handle?
In my case, was the toxicity of chemotherapy worth the likelihood (though without any kind of guarantee) of gaining more time until the lymphoma comes back?
Or was it smarter to buy just a few years today with the hope that one of the many newer immunotherapy treatments in clinical trial would be ready by the time I needed it?
Complicating the decision even further: There are no data that either direction makes a difference for overall life expectancy – and no one can say in advance how Brian’s body will react.
Back and forth I went, weighing this apple against that orange. I was suffering from Fear of Making a Decision – any decision, but particularly a wrong one.
Fear of Making a Decision (let’s call it FOMAD for short) is not exclusive to health, of course. It rears its indecisive head whenever any kind of really big choice is in play: choosing a partner, a school, a job, moving to a new country.
FOMAD is where its sister anxiety FOMO (the Fear of Missing Out) gets its Sliding Doors
moment and nothing is the same after.
I felt paralyzed. How could I possibly decide?
“You’re so not paralyzed,” my therapist said to me. “You’re actively engaged in finding out as much as you can. You just haven’t come to a decision yet.”
My therapist was right (again). Since my diagnosis, I had met with some of the top experts in the field in Israel, including a third physician who’s been described as a “lymphomaniac.”
At the same time, I was doing my own intensive research, reading scientific papers and learning a litany of acronyms (GELF, PRIMA, FLIPI, R-CHOP, CAR-T and many more). I’d joined online support groups and talked at length with other follicular lymphoma patients about their experiences.
Investigating antibodies and treatment modalities had become a full-time job.
It was my wife, Jody, who helped me grapple with my decision- making fear.
“Given that neither option is going to kill you, can you be comfortable in whatever decision you come to, knowing that you’ll be making it with imperfect information?” she asked.
Jody, I realized, was essentially making a religious argument: Can you have faith, even where some things are as yet (and possibly will always be) unknowable?
The irony was not lost on me: I’ve spent much of the last decade moving away from religion. Now the way to balance the risks ahead was to… have faith?
“Either choice is a risk,” my main doctor said after another one of our marathon “debating” sessions. “But it’s a calculated one. There really is no right or wrong answer.”
At this point, I know as much as I can about my disease and how to treat it. Whichever direction I opt for in the end, ultimately I’m choosing faith – in science and modern medicine and the wisdom of my caring physicians.
That’s a religion I can get behind. 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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