Amanda Bennett’s memoir, The Cost of Hope: The Story of A Marriage, A Family and a Quest for Life, is one of the most intelligent memoirs I’ve read in years. Bennett takes her own personal experience fighting to save her husband’s life in his struggle against a rare form of kidney cancer and as an investigative reporter she uses his story to illustrate what all of us face: the cost of hope.
First Bennet hooks the reader with their romantic adventures. In 1983 she worked as the lone Wall Street Journal reporter in Peking and at a party thrown by John Broder of the Chicago Tribune she met a man who claimed to be a Fulbright scholar studying relations between China and Soviet Union, Mr. Terence B. Foley. She soon discovered he is really the Country Director for the American Soybean Association when they meet again a big American bank opening reception.
“You’re cute. You’re a journalist. I wanted to talk to you. Journalists are always working. How long would you have talked to me if I told you I was in soybeans? You wanted to talk about China and Russia, so I made up a person who could talk about China and Russia. I knew you’d find out sooner or later” Bennett quotes her husband as she recounts the start of their romance. Bennett pursued her career in journalism (earned a Pulitzer Prize and co-chaired the Pulitzer Prize Board) and they raised two children while she served as editor at The Philadelphia Inquirer, the Herald-Leader in Lexington, and The Oregonian; with a stint in Atlanta as bureau chief for The Wall Street Journal. Foley could play 15 different instruments, spoke six languages, worked as a sports photographer, real estate appraiser, San Francisco cable car conductor, and completed his Ph.D. in Chinese history at age 60. A passionate love story spanning two decades, when in walks cancer on their son’s 12th birthday.
This is so much more than a widow’s story. It’s all of our stories. More fortunate than many to have insurance and good medical care, Terence and Amanda hope for the best. After a painful emergency room visit for stomach pain, Terence is admitted to the hospital with a diagnosis of severe ulcerative colitis. The attending physician, almost as an aside, mentions a shadow is present on Terence’s kidney and they should have that looked at. Before this health crisis is over, the entire colon is removed and a cyst on the kidney is identified. Ten years later the cancer eventually killed Terence.
In an unflinching manner, Amanda retraces their steps in the medical system and examines the medical decisions and financial costs; especially the ways in which the expenses are masked from patients, the healthcare consumers. Because Amanda and her husband had insurance policies and because they moved around and changed jobs and insurance providers they had comparative costs for comparable services. The intricacies of insurance billing are laid bare as inane. The interviews she has with the doctors and oncologists and her review of the research doesn’t find fault with the quality of care or the performance of caregivers. Her compassionate explanation of the costs of her own husband’s care begs for a more clear-eyed look at end-of-life decision-making.
For three years they did not treat the cancer in Terence Foley. Yet every three to four months they would return to the oncology clinic to make sure the cancer kept quiet. $36,000 for doing nothing but waiting and watching. She didn’t think about shopping around for cheaper CAT scans. What matters most is what works to make the patient better and you don’t question the cost when speaking to your doctor, you question the effectiveness of a treatment or a drug. Will it make him better? Is there hope?
“Today as I review the records and the research, the stark reality of even the most optimistic outcome leaps out at me. Even the best chances were slim, I can see in retrospect. Yet back then, hard as I looked, I saw none of that. Terence and I believe in these drugs with a belief that is beyond belief. Partly as a result of our belief, for the next year and a half, these drugs buy us a normal life. They buy us hope,” Bennett writes with the distance and perspective of time. And during those years the simple pleasures of family life are appreciated. “The dailiness of our lives. That is what hope buys us.”
In the end, looking back over all the research she did of Foley’s medical records, the one finding that popped out is the sheer volume of procedures done over again and again. Seventy-six CAT scans during a seven-year illness ranging in price from $550 to more than $3,000 each. The experimental drugs billed to the insurance companies at $27,000 per dose with the insurance company receiving a $20,000 discount reminded Amanda Bennett of her experiences in Chinese markets bartering with vendors who named “…ridiculous prices that have no bearing on reality, hoping that some won’t drive such hard bargains. And the only ones who can’t see what is going on are the people like Terence and me who are using the care, and the employers like mine who are paying the bills.”
The sum total of the financial costs for Terence Foley’s medical care? $618,616.00
No regrets, no ‘what-ifs’, no finger pointing. Amanda Bennett recalls with humor and honesty her husband’s feisty character and humanizes the healthcare providers who treated him. She’s tough as nails on herself. She can’t help but ask herself how much Terence endured in the painful treatments and drug trials just because he knew she wanted him to live. The cruel twist to our medical system in its benevolence to extend life now leaves some loved ones’ grief contaminated with guilt and extraordinary outstanding medical expenses to boot. This memoir conveys that national tragedy.