randy_byers | Entries tagged with mortality

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.

I first stumbled on this book one sunny day when I was walking around Lake Union with my friends Abi and Kristal. Abi stopped by a curbside "library" (a little kiosk where neighbors could leave books for other neighbors to borrow) and found this one. Kristal is a breast cancer survivor, so we had in fact been talking about cancer and death on our walk, and we were all struck by the weird synchronicity of this find. Kristal took a picture of Abi with the book, I posted it to Facebook, and my sister saw the photo and went to Powell's to look for the book. Once she'd read it, she gave it to me.

The subject-matter of the book is very similar to Atul Gawande's Being Mortal. However, Morris is a journalist, so her approach is much different from Gawande, who is a practicing surgeon as well as a writer. I have to admit that I found Morris' book a little over-written at times, and I preferred Gawande's focus on history, sociology, and science. Morris is more personal and more emotional. It's more populist, and less intellectual. However, she has a similar concern about how advances in medicine have paradoxically left us at a disadvantage in understanding and accepting our mortality. She doesn't cover the broad range of topics of how we handle the elderly and the dying that Gawande does, but instead she focuses on the ways in which even when we try to make sure our end-of-life experience isn't a nightmare of painful attempts to prolong life no matter what, we can get sucked into desperate measures anyway.

If there is a basic thesis here it's that a living will and explicit DNR instructions aren't necessarily going to save you from procedures you would prefer not to undergo. She is very compelling in exploring all the ambiguities and uncertain feelings that can lead family members, medical personnel, and even the dying person themselves to make bad decisions when push comes to shove. If your instruction is that "I don't want desperate measures unless there's a high probability that I'll be highly functional if I survive," how do you judge what is "high probability" or "highly functional"? One of Morris' strongest points is that a lot of times there's no right answer, so it's easy to let inertia carry you in the direction of "more life," for better or worse. While she tends to focus on stories where "more life" means "more suffering," she does acknowledge that sometimes "more life," even when it means "more suffering," can also mean "more time with family and loved ones." Is that time worth it? Who can possibly measure such a thing?

Although she does talk about practical things such as living wills, medical directives, and "value history forms" (in which you attempt to describe your priorities and what's important to you), or how to talk about death with loved ones who are dying or with children, the book is really less a how-to than an invitation to contemplate your mortality and what it means for you and those close to you. Like Gawande, she feels we are too insulated from death now, so we don't really deal with it until it's happening. A lot of times that's too late. Also like Gawande, she stresses how the process of dying can be a very clarifying thing and can bring people closer together. Gawande opened my eyes to the fact that fear of death can be allayed by a sense of connection to family and community, and I'd say Morris comes to that same point from a somewhat different direction. What matters in the end is our connection to other people, and the process of dying has a way of driving that home. If we can grasp this fact while we're still in the prime of life, then our lives and relationships will be richer for it. That's why she wants us to start talking about death sooner rather than later.

This book was a gift from

ron_drummond, who thought it might be useful to me in thinking about treatment options for my cancer. It turned out to be much more than that, and indeed it really opened my eyes regarding mortality in ways that I'd been vaguely hoping my whole life I'd eventually come to see. Much of the book is not about terminal illness in the sense of cancer but rather what happens as we get older and our bodies start to fail. It's a difficult book to read, because it forces us to confront what that physical failure looks and feels like. Gawande, who is a practicing surgeon, is an impressive writer, and he spends a lot of time on the social history of care for the elderly over the centuries and how it has changed in the face of modern medical advances. One central thesis is that as we've gotten better at prolonging life, we've gotten worse at accepting our mortality and at making good decisions about how we want to die. The most depressing chapter was probably the one about the practice of geriatric medicine in this country and how it is so badly rewarded that we don't have nearly enough physicians practicing geriatrics to serve our aging population.

The thing that Gawande really helped me understand is how our perspective and priorities change when we are confronted with mortality, and it felt as though he was talking to me in real time as my own perspective shifted in the face of the diagnosis that I have a very aggressive and, statistically speaking, probably fatal form of brain cancer. The thing that has blown me away is the tide of love and support that has flowed my way in response to this news, and how calming it has been. I was completely shocked and freaked out by the initial discovery of the tumor and the speed with which I was assigned to have major brain surgery and my life was totally upended, but as my family and friends formed a circle around me, the fear and panic rapidly abated. I didn't understand why, but Gawande spells it out in plain language: 'The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society. If you don't, mortality is only a horror. But if you do, it is not.' The thing I've been realizing is that in my family and in the science fiction community I'm part of something larger than myself, and that something larger will survive after I'm gone. I find it enormously comforting right at the moment. Not that I'm not ever going to be afraid again, and even now I'm worried about the upcoming radiation/chemo treatment and what that might do to my health and whether it will actually do anything to help me survive.

One of the other hard parts about reading the book is that Gawande's father eventually developed an astrocytoma tumor like mine, and he reacted very badly to the radiation and chemo treatment I'm about to undergo. Of course, he'd already been suffering from a spinal tumor, and everybody handles these things differently. I've been told over and over that my cancer is unique -- pretty much literally so, since it's based on my own genetic material -- and thus my experience is also going to be unique to me. When Gawande does get to the terminal illness chapters of the book, he has some very helpful things to say about how to make choices to preserve what's important to you rather than just to try to prolong life. He emphasizes the advantages of figuring out what's important to you in the first place and then deciding what trade-offs you're willing to make to preserve it. He also has some interesting things to say about studies showing that hospice can be very useful not only in helping you make these final decision, but also even, in some cases, helping you live longer without further potentially damaging medical treatment. These are hard things to think about, but he illustrates with vivid examples the ways that facing up to the realities can pay off in quality of life and love at the end of it all.

Over all I thought this was a brilliant, very well-written and -researched book, and I think it would be useful to anyone who is dealing with a dying relative or friend or is interested in thinking about their own mortality. I will say, however, that it reduced me to tears any number of times just from the compassionate descriptions of the suffering and loss that some people suffer as their lives or the lives of their loved ones go south. It's not an easy read, but I highly recommend it. It taught me things I needed to know.

1998-10-31 Jay&amp;amp;amp;#39;s costume for Ghoulbooty

Today it has been a year since my friend, Jay Salmon, died unexpectedly of heart failure at age 49. I still vividly remember the shock and disbelief and the sense of unreality I felt at the news. But here it is, a year later, and it's still real.

In that year, two more friends have died -- two more people I considered "my age". I guess I've entered the stage of my life when death in my cohort will be more common. It's a sobering thought, and a reality, like Jay's death, that I'm trying to learn how to accept.

Jay's death was much harder for me to take than Velma or Stu's, partly because I was closer to him and partly because it was so abrupt and out of the blue. There was no warning and no time to prepare. My own morbid imagination has often wondered over the years, "What if I suddenly died right this instant?" Such fantasies always seem to end in the same place: there's nothing you can do to prepare for that, so why worry about it? But the memory of losing Jay keeps me coming back to it. I feel I shirk the thought of my own death because I'm not ready for it and I still can't accept the inevitability.

Well, I'm sure this confused wrestling match will continue. Meanwhile, I remember Jay and the many fun and strange and warm times we had together, many of them on Halloween. I remember going to the Halloween show at Union Station in 1988 with him and several other friends to see the Butthole Surfers and thereby seeing an opening act called Nirvana as well. I remember the Halloween when he dressed as in the picture above, and he and Elonna and I went to Ghoulbooty at the Elysian and danced our asses off. I remember the Halloween when he recommended we watch a double feature of The Bride of Frankenstein and Planet of the Vampires, thus introducing me to two of my very favorite movies. I remember the Halloween when we were hanging out in my house and he called his daughter to wish her good night and to tell her he loved her. He was an excellent human being with a thing for Halloween. He had a rubber skeleton toy that he called Mr. Bendy. Endless memories. I wish we were still making new ones together.