randy_byers | The Cost of Hope by Amanda Bennett (Reply)

Labeled "A Memoir" on the jacket, this book is actually trying to do a lot of different things. The subtitle is "The Story of a Marriage, a Family, and the Quest for Life." In the blurbs, Judy Woodruff is quoted: "This extraordinary, memorable look inside the life of a loving family facing a terrible diagnosis raises urgent questions all of us need answered about the delivery and cost of medical care in our country." This book was given to me by my brother months ago, and now that I've read it I'll be curious to find out what he took from it, because I had a hard time with it.

It's a portrait of a man, Terence Foley, and of the author's relationship with and marriage to him, and it's the story of his battle with cancer. Scattered throughout is evidence that the book started out as two magazine articles about how much money that battle with cancer cost. I had problems with most of this, to be honest. Amanda Bennett was obviously deeply in love with her husband, but her portrait of him makes him seem like a Type A jerk to me. She portrays him as a larger than life genius, and he clearly was extremely bright and ambitious and driven. All of it seemed out-of-proportion to me. He comes across as over-bearing and arrogant. She portrays their relationship as tempestuous, with constant arguments and shouting at each other. Again, I think this is meant to show that they were passionately in love and deeply engaged and connected in ways that surpass reason, but I found the portrayal of their relationship just as irritating as the portrayal of Terence Foley. Maybe I just don't know enough super-ambitious, super-accomplished people, so they just seem alien to me. Their lives didn't look like much fun to me, but Bennett keeps insisting it was fun turned up to eleven.

As for the cost of battling cancer, I almost stopped reading the book because I found that part of the book so perverse. Who is it aimed at? Is she asking me to stop and think about what my treatment costs before I agree to try it? She ultimately admits that they didn't do so, because they had insurance that covered it. Me too! I don't think it's up to the patient to figure out whether the price of treatment is "worth it." If I was paying out of pocket (like one friend of mine is) it would be different, because then I'd have to think about debt, but the evidence seems to indicate that people who are about to die don't really give a shit about debt, for fairly obvious reasons. Ultimately I thought she might be aiming that part of the book at policymakers, because one point she makes is that through looking at the insurance bills after her husband died, she learned that different hospitals charge different prices for the same procedures and that different insurance companies pay different amounts/percentages for the same procedures. I would agree that this probably ends up making our health system inefficient and too expensive, but again, I think that's something that needs to be dealt with in law, not in my decisions about what treatments to take.

What kept me going through a book that irritated me over and over again was the story of Foley's struggle with cancer and Bennett's struggle to accept her beloved husband's mortality. There's another dimension to "the cost of hope" that she at least flirts with, which is whether the hope that the loved one will survive leads one to make bad decisions that cause suffering. She gets into the nitty gritty of their research into different treatments for kidney cancer that were just going into clinical trial at the time Foley was diagnosed, and that's all quite interesting. Yet while it shows you the difficulty of the some of the decisions they had to make, in the end it seems that they made good decisions that didn't prolong his suffering. So is this book going to help me make good decisions when the difficult decisions start to come? It's hard to say. The bottom line seems to be how much you are willing to suffer for a chance to live a little bit longer. When it gets to the point where they have to take drastic measures to keep you alive, that's probably not such a hard decision, but I have no idea what will happen if/when the tumor returns and they ask if I want to do another round of chemo, more surgery, or a new treatment for which they don't have much data yet. Reply hazy, ask again later.