Books on Death and Loss: My List

I am a compulsive reader. Ed and I re-read the Aubrey-Maturin series together during the nine weeks between his diagnosis and his death. For the next nine weeks, though, I don’t think I read a single book, for probably the first time since before I could read at all. I’d pick one up, put it down…

When I finally became able to read again, I alternated between re-reading familiar detective stories, and seeking out books about death, dying, and loss. I needed to see what others had experienced and what kind of sense they made of it. I wanted to be accompanied by people who had been down this path. I wanted to fit our experiences into a wider picture–whether it was as specific as the modern American medicalization of cancer, or as broad as how humans grieve. As I read I sometimes nodded, sometimes shook my head and argued, sometimes put the book down to cry. When I finished I would go looking haphazardly for the next book.

In case someone else needs such a list, here are the ones I’ve read in the past 10 months or so. (I’ve left out a couple of would-be inspirational volumes in which I could not discern practical information or a gut-level response to death.)

  • Kitchen Table Wisdom (Remen)
  • When Bad Things Happen to Good People (Kushner)–for some reason I’d assumed this would be sappy or simplistic. It’s not. The author is a rabbi whose son was born with a progressive, fatal condition.
  • Moving Forward on Your Own: A Financial Guidebook for Widows (Rehl)–realistic and practical.
  • Healing after Loss: Daily Meditations for Working through Grief (Hickman)–the author’s teenage daughter died in a summer vacation accident.
  • For Widows Only! (Estlund)–the author’s husband died beside her unexpectedly one night, and she wrote this book to help other widows navigate their path.
  • This is How: Surviving What You Think You Can’t (Burroughs)–the author has been abandoned, abused, and addicted, and has watched those closest to him die of AIDS.
  • Transitions: Making Sense of Life’s Changes (Bridges)–interesting theoretical perspective.
  • The Way of Transition (Bridges)–what he wrote after his theory met the fact of his wife’s death.
  • A Grief Observed (Lewis)–written by C. S. Lewis after his wife died.
  • Being Mortal (Gawande)–a discussion of how American medicine handles old age and death.
  • The Angel in My Pocket (Forbes)–about the author’s struggle to handle the sudden death of her young daughter.
  • The Year of Magical Thinking (Didion)–a memoir of the year after Joan Didion’s husband of many decades fell over dead at dinnertime one night.
  • How We Die (Nuland)–Dr. Nuland’s perspective is both personal, based on deaths within his own family from his childhood onwards, and professional: writing a couple of decades before Gawande, he tackles the same issues of the medicalization of death and dying.
  • Complications (Gawande)–not directly about death, but about decision making and the medical field.
  • H is for Hawk (MacDonald)–an account of the author’s reaction to her father’s abrupt death (an accomplished falconer, she got a goshawk). T. H. White is involved.

Of course, On Death and Dying belongs here. For some reason I haven’t finished it yet.

And one more thing: poetry. Written on the Sky, translated by Rexroth, a tiny volume you can carry in a pocket or purse, given to me by a good friend. Good Poems and Good Poems for Hard Times, edited by Garrison Keillor. Individual poems sent to me by hand, by friends and sisters: “A Brief for the Defense” by Jack Gilbert. “A Prayer in Springtime” by Robert Frost. Of course “Funeral Blues” by Auden.

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Chemo’s Side Effect #4: Muddying the Waters

Chemotherapy’s ugly side effects–nerve damage, mental confusion, exhaustion and sickness–gave us a set of alternative reasons for my husband’s symptoms, blurring the outlines of the cancer and focusing our attention on explanations that felt manageable. As long as Ed’s physical weakness and shocking weight loss might be side effects of the regimen, they need not be attributed to cancer’s greedy growth. If we could call the fuzzing of his beautiful clear mind “chemo brain”, then we could also envision him outliving that side effect for a little while before the inevitable final onslaught of the returning disease. If we could blame chemotherapy for tingling fingers, a dragging foot, encroaching feebleness, edema—then we were still navigating within medical territory. Without the distractions of chemo, each symptom would have been a lightning flash starkly revealing the landscape of death.

Chemo’s Side Effect #3: Procrastination

“Procrastination is the thief of time,” wrote Edward Young, and an Anglo-Saxon proverb predicts a solitary deathbed for the one who fails to grab life’s chances.

How is this relevant to chemo? Doing chemo buys time. You pay in present suffering for the chance at more life. Right?

But undergoing chemo is not like working out in order to get fit, or spending a grueling weekend collecting documents so you can get your taxes done on time. It can seem a lot more like cutting off your nose to spite your face.

Because Ed was doing chemo—and in spite of the fact that it was never envisioned as a curative regimen—we could not start hospice care. On a deeper level, because we were doing chemo, we postponed discussing death and its implications at all: not simply because we couldn’t have hospice care yet, but because as long as Ed was being aggressively treated, there was a sort of pact that it was not yet time to confront the imminence of his death.

But the monsters don’t stop coming nearer because you shut your eyes.

Chemotherapy is meant to postpone death. But instead it can postpone preparing to die. If death ambushes you while you are trying to forestall it, then it might be said you’ve failed in the attempt to lay claim to your life—not because you are going to die after all, though that’s true, but because you never have the chance to lay claim to your own death.

This is a real loss. To lose the chance to think about mortality. To miss the last flight home, not just because chemo makes it hard to travel, but because chemo lets you pretend you’ll catch another flight later. To wait until it’s too late, as some people do, to say “goodbye” or “I love you” or “I’m sorry.” To never complete the practical tasks and unfinished business (does anyone else know where your passwords are?) that you have been putting off until After Chemo.

My husband didn’t have a “bucket list” of events and exploits to accomplish; he just wanted more of his useful, quiet, family-oriented life. Chemo encouraged him to think he might have it back for at least a little while. Focusing our gaze on that distant mirage, we walked through the last weeks of his life without recognizing them.

Chemo’s Side Effect #2: the Trolley Tracks of Protocol

Worse than the fear of infection is the way a drug regimen encourages everyone to hand the whole treatment plan over to a calendar. Looking back, I’m reminded of the time I biked across a trolley track at too shallow an angle: my front wheel slipped into the groove, and suddenly the track took over the steering.

Because of the four-chemos-then-scans protocol, no one actually did any hands-on physical assessment of Ed’s condition in the last weeks of his life–just blood workups and labs. No one but us weighed him, or had any useful responses when I reported how his weight was plummeting. We, not the professionals, noticed his thrush and pressure sores, which no one had reminded us to watch out for.

The doctors and nurses never directly assessed the growth of the palpable and ultimately visible tumors, which would have told them without waiting for the scans that chemo was not stopping the growth of the bone cancer or the lymph cancer.

In short, the fact that we were doing chemotherapy acted as an excuse for withdrawing from more personal forms of doctoring.

Towards the end, I asked more and more often for help and guidance. I did not have the expertise to interpret Ed’s symptoms or predict how much longer he had, nor did it make sense to tell him my uninformed fears. I needed the voice of experience to explain to both of us what was taking place and what we could expect. But the oncologist stuck to the schedule: he was waiting for the results of the follow-up scans; after that, at our routine post-scan evaluative appointment, he would discuss matters with us.

We did not go to that evaluation. That evening, Ed kept a different appointment.

Chemo’s Side Effect #1: Misdirected Fear

Ed and I spent his last weeks afraid of infection because of the lowered white blood cell count chemo causes: limiting visitors, limiting hugs and kisses and handshakes, forbidding children to visit. For the past two years we’d been a kind of “aunt and uncle” to a friend’s small child. Because he was on chemo, he never hugged little Maddy again, and the last time she ever saw him, she was scared to go near him because she’d been warned she might make him sick.

I spent my days in a state of vigilance, trying to protect him, staring alertly in the wrong direction for an enemy I didn’t know how to recognize. We made a trip to the emergency room, leading to an overnight hospital stay, because I thought he was running a temperature that might indicate an infection: a trip that was expensive, exhausting, upsetting, and cost him all the eleven pounds he had managed to regain after our initial hospital stay. And he didn’t have an infection after all.

What if he had had an infection?

Would it have made sense to fight against it like a tiger if that meant intervention cascading after brutal intervention, family shoved aside while the doctors desperately tried one more tactic to rescue a dying man from a quicker death?

We were afraid of the wrong things.

Choosing my Husband’s Pseudonym

This is a weird thing to do and it makes me feel like I’ve got two husbands.

I don’t want to use real names in this blog, but this whole section is about my husband’s death and its aftermath—I have to call him something. Saying “my husband” in every sentence gets clunky. I’ve read blogs where the writer’s family members are referred to by their initials alone, and I find that distracting. The cutesy abbreviation “DH” is useful in certain venues, but I’ve never liked it and I’m not about to start using it now. I also don’t want to plaster him with a fake nickname.

So I think I’ll call him Ed, after two men who were important to him, one of them a good friend who died of cancer long ago.

Choosing a pseudonym is a kind of falsification. But in another way it feels truthful and appropriate: my husband, the real man with his own thoughts and opinions, is gone. Now what’s left is my memories and ideas about him, and as we can’t ever know another person completely, it makes some sense to put a new name on this construction—I suppose.

I still feel like a bigamist!