And the hidden $$$ costs…

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.

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Was chemo worth it?

No.

“I fear ye hae been poisoned, Lord Randall my son,

I fear ye hae been poisoned, my bonny young man.”

“Oh I hae been poisoned, mother, mak my bed soon,

For I’m sick at the heart and I fain would lie doon.”

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.