25 October, 2021

Litstack Rec: How to Write an Autobiographical Novel & The Cost of Hope

The Cost of Hope:  A Memoir by Amanda Bennett

Amanda Bennett has lived a pretty big life so far – Harvard graduate, Pulitzer Prize winner, reporter and editor for numerous news outlets (including the first female editor of the Philadelphia Inquirer), now director of The Voice of America. Yet her deeply personal and moving memoir is not about any of these things. Or rather, it is about all these things, but only as they reflect in the relationship she had with her husband, Terence Bryan Foley, and the fight with cancer that eventually claimed his life.

Thankfully, Bennett does not use this cancer to ambush the reader or to eke out any kind of sentimentality. Indeed, we know that Terence succumbs to the disease before the story really starts, even though it is not discovered until 13 years into their marriage. No, this book is a memoir, not only asking “did we do the right thing?”, but also relating how the medical and insurance industries reacted to what they were going through. It is the journey not just of two people through a catastrophic disease, but through a cacophony of procedures and invoicing that proved as inexplicable as the appearance of mutant cells in Terence’s body.

That’s not to say that this book is an indictment of the medical field. The doctors and hospital staff that worked with Terence were genuinely dedicated to understanding and helping Terence beat his cancer by any means possible. And, due to Amanda and Terence’s circumstances, there were no real concerns about costs or whether a procedure, treatment or drug would be denied due to insurance issues. But because at her core she is an investigator, Amanda wanted to know what the economic ramifications of Terence’s illness were, along with symptoms and prognoses. And since this is a memoir, she shares with us not only what was happening, but also the questions, fears, and triumphs that she endured during this journey with a man whose personality spilled over and captivated her life.

Amanda first met Terence at a party in 1983, in a Peking (now Beijing), China that was “still enmeshed in the shock and trauma” that was Mao’s Cultural Revolution. She was a correspondent for The Wall Street Journal, and he was… what? An expert on Sino-Soviet politics, yes. Erudite. Witty. Maybe a government operative? A spy? Then she finds out that he is really with the American Soybean Association. When she confronts him about not being upfront with her, he responds “How long would you have talked to me if I told you I was in soybeans?”.  She stomps away, furious. But they were drawn together by the isolation of their shared surroundings, and also because he was a match to her own forceful personality.  She writes:

Why do I keep meeting with this man? At forty-four, he’s twelve years older than I am. He’s chubby. No, he’s overweight. He wears owl glasses and bow ties. He’s crazy. And we’re angry with each other almost twenty-four hours a day.

It turns out that “this man” is so much more than what he appears to be, and it’s the exposure to his personality and quirks as seen through the just as opinionated and strident Amanda that captures the reader. It’s a marvel that two such distinct personalities could not only have a long term and loving relationship, but also that the relationship was successful without dictating that one partner acquiesce to the needs or expectations of the other.

The disease shows up as an aside noticed during a more immediate procedure and is ultimately identified as an extremely rare and aggressive form of kidney cancer. From that point on, Terence’s condition becomes the focus of numerous specialists, researchers, internists, MDs, surgeons, pathologists, technicians. He undergoes surgery, then scans every 6 months looking for signs of a spread to other organs; drug treatments start once the signs appear followed by clinical trials with experimental drugs and doses. At every step Amanda shares with us the research she did to learn about treatments and what lay beneath the medical jargon. Later, she takes us with her when she returns after Terence’s death to visit those involved in his care in an attempt to get answers to questions that seemed either too small or too big to be addressed when they were battling the disease.

And what of the cost of the disease – or as Amanda calls it, the cost of hope? As a businesswoman, Amanda tries to understand this, as well. (In fact, the book grew out of investigative articles she wrote for Bloomberg News and Newsweek.) Not surprisingly, even for a team of investigative professionals, answers are illusionary.

Part of it is because the costs often do not touch the well-insured Bennett-Foleys. Part of it is the segregation and lack of transparency and/or accountability between the medical industry, the insurance industry and the patient.

For example, one drug Terence takes costs the insurance company $26,360 per dose, which it negotiates down to $6,665.40 a dose. (“Terence never knew any of this, of course. He knew neither of what was billed nor what was paid. I wonder now what he would have thought if he realized that the life-extending one-hour drip was billed at the cost of half an Ivy League tuition every time he sat down.”) But when Amanda tries to find where the other $20,000 goes, she hits a brick wall, with both the hospitals and insurance companies citing contracts that prevent disclosure. The manufacturer was charging wholesale distributors $1,925 for Terence’s 350 ml dose, but stated that they couldn’t speak to what others charge for its use. Even now, that question – and others – remain unanswered.

And, part of the illusiveness is due to the lack of standardization in cost of procedures across the medical field. Amanda found that the cost of Terence’s CAT scans (76 scans performed in the course of his illness) ranged from $550 to $3,232 for the same procedure, with the most expensive more than 12 times the amount reimbursed by Medicare. Plus, not only did the amounts billed to the insurance companies bear “almost no resemblance to the amounts the insurance companies actually paid”, but each insurance company calculated what they would pay for the same procedure very differently, even though the level of coverage remained constant.

Ultimately, though, this book is not about facts and figures. It is so much more than that. As Amanda writes at the start of the book:

Instead, this is about Terence and me. About the choices we made. It is about a marriage and love. About a man and his life. It’s about family and everything we did to try to save the husband and father at the core of it. It is also the story of how I set about to understand, after Terence died, why I did what I did, why the doctors did what they did, and why Terence did what he did – and to try to find out the cost of hope.

It’s a story well worth reading, not only to open our eyes but also to touch our hearts. And deep at its center, it answers the most basic question of all:  would you pay, if necessary, any cost to keep a loved one alive for a while longer? In the words of Amanda Bennett, “Damned straight.” Let’s hope that few of us need to confront that same question (and my heartfelt condolences to those who have). But this courageous, intimate, clear-headed and touching memoir is rewarding and enlightening, even if we don’t blessedly have to ask the question ourselves.

— Sharon Browning

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