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.

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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.

Chemotherapy: the side effects they don’t tell you about

Chemo is presented as having some unpleasant if usually manageable side effects, but the list is actually far longer and more insidious than the physical ones they tell you about. Not that those are trivial: counting pills and adjusting medications, weakened and sickened by poison, is a hell of a way to spend your last weeks on earth. Further, it is possible that the assault of the chemotherapy hastened Ed’s death. Certainly all the tumors but the original bladder tumor grew rapidly during treatment, and spread with vicious speed into organs that were still sound as a bell at the time of his diagnosis.

Setting those damages to one side, here are some other side effects that aren’t listed in the information sheets, and that no health care professional acknowledged, let alone tried to help us manage:

  • Misdirected fear
  • The trolley tracks of protocol
  • Procrastination: the thief of time
  • Confusion

I’ll take these one by one in the next posts.

What Happened

IMG_3062 smashed from step to step horiz crop

Loss is not just the topic of parts of my blog, it’s the reason for the blog itself: if I still had a husband, I’d discuss my thoughts with him, as I did for three decades. But his death last year has simultaneously given me a lot more thinking to do, and taken away the partner I used to think with.

The ramifications of death are numerous, and I expect to write about quite a few of them over time. Here I want to stick to the bare facts, as background for whatever comes next.

My husband and I were married in the 1980s, had two children in the 1990s, and had the good fortune to both get jobs teaching at the same small liberal arts college in the early 2000s. So we were colleagues for the past several years: it was one of the best times in our marriage, though hectic and not without stresses. Our son went to college; our daughter was finishing high school.

Early last year, symptoms that Ed had been interpreting as being due to kidney stones became increasingly harder to ignore. Usually an active healthy man, now he became quite ill and finally went to a doctor, who prescribed antibiotics and muscle relaxants but was clearly worried and said to come back very promptly if there was no improvement. Five days later we were back and he sent us to an imaging center for abdominal scans. As we were driving home from getting the scans done, the doctor called my cell phone to ask us to come see him: not a very good sign. When we got there he saw us at once: also a bad sign, as this was a walk-in clinic with usually a pretty long wait time. He came into the room, sat down, and said, “I do not have good news for you.”

My husband was going to die. Not someday, like all of us, or possibly within a few years, like someone with a scary diagnosis: he was going to die soon.

We went straight into the hospital, where further scans told us more about the extent of the illness. The original bladder cancer was large and of very long standing (in retrospect, probably a decade). The metastases were pervasive: tumors densely speckled his lungs; they showed up in his bones from head to foot; his lymph nodes were involved, and as we already knew from the first scan, there were several lesions on his liver.

Chemotherapy was presented as the tool for anyone who wanted to live longer. Ed wanted to live longer: he said yes. There would be four rounds, then follow-up scans, after which we would meet with the oncologist to discuss how effective the therapy was being.

We did the four rounds of chemo, but he was failing very fast. We transferred to Hospice care shortly after the follow-up scans (kidneys, peritoneal cavity, pancreas, adrenal glands). My husband died beside me, in our bedroom, at the end of May, on the day that had been scheduled for his evaluation appointment.

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!