chemo

Books on Death and Loss: My List

~ Flamingo ~ 1 Comment

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.

And the hidden $$$ costs…

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We know that chemo is paid for by insurance, mostly. But what are the side effects of that payment?

My husband and I worked for the same employer. Around the time of his diagnosis and treatment, two or three other people at our workplace also had catastrophic illnesses. One of our strongest benefits was a good insurance plan, but in the last week of June–one month after Ed’s death–all employees were notified that due to dramatically rising insurance costs, our insurance carrier would change, effective July 1st.

The new insurance plans have high deductibles, high out-of-pocket payments, and numerous exclusions. Our daughter’s medicine, for example, used to cost us $300 a year; now it is $1400 a year. So at the moment when our household income was halved and we were still negotiating the payment of our original medical bills, our insurance was taken over by a new company that took no cognizance of what we had paid in the first half of the year–more than doubling the year’s deductible and out-of-pocket costs–and that pays relatively little of our ongoing expenses. This has happened to every one of my colleagues, and they have suffered this loss in large part because of my husband’s last-ditch, ineffectual, extremely costly chemo treatments.

It’s seen as somehow obscene to weigh the financial costs of desperate remedies. Who cares what it costs? Is there any price to be put on a human life? Surely not. If the chance at six more months of life costs a million dollars, shouldn’t we spend the money?

But if the attempt to gain six more months of life ends up as the tipping point that spills every one of your coworkers into losing a good insurance plan… what then?

We need to think about these questions. It’s horrible to have cancer, to die of cancer, to lose a family member to cancer. It’s tempting to say we can’t put a dollar sign on the individual’s right to treatment. But the dollar sign is there, and it carries real consequences for other people’s welfare. We should not pursue desperate and costly remedies with such tunnel vision that we don’t see the implications for those around us.

Chemo’s Side Effect #4: Muddying the Waters

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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

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“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

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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.