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.

Chemo’s Side Effect #1: Misdirected Fear

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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

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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

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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

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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!

On being asked, “How are you doing?”

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In a public or holiday setting, I focus on trying to participate more or less normally in the social situation. But when other people (I mean those who are not close friends or family) see me there, it triggers their dormant memory of my husband’s death, and they may feel it as their opportunity to share a sympathetic moment.

There are ways of doing this that work. Yesterday at Easter service two people offered me loving hugs, one of them a woman I honestly didn’t recognize even a tiny bit. It was nice. They were giving me something that I could receive from them. They didn’t ask for anything back.

On the other hand, a well-meaning pastoral person asked me at the cookout, in a serious voice, how I was doing.

Here is a tip for those who wonder what to say to a bereaved person: don’t ask solemnly, “How are you doing?” It’s like a kid asking for an elephant: if I could give it, you’d find you didn’t want it after all.

Instead I recommend another question I was asked at the same cookout: “So what have you been doing lately to be good to yourself?” I could honestly reply, “Planting trees.” But in response to the minister’s inquiry I merely said that I was done with my food, and asked him where the garbage can was. I couldn’t really think what else to say. The images and feelings he was asking me to tap into are ones I don’t access in company.

By all means, employ the usual formulas of daily living. It’s okay to ask “How are you doing?” in a casual manner, expecting a formulaic response. But please don’t invest the question with that mournful, soulful emphasis, as if you wanted a heartfelt answer. You’re just asking to be allowed to take a postcard away with you as a wistful little souvenir of another person’s recently bombed landscape. Right now it’s winter and I have chores to do. Don’t be a tourist. If you really want to know more about what it’s like here, stick around. Carry water. Chop wood.

Someday, chances are you’ll come back here to live.

On Being Told What to Do (re: cats)

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Being told what to do doesn’t sit at all well with me. I foresee that this might be an ongoing theme, hence the specific heading about cats in this one.

Since I became a cat owner I’ve been coming in for more than my usual share of people telling me what to do. One camp tells me not to let the cats out because they can get run over. (More on this another time.) Another camp says not to let the cats out because they’ll catch birds. (If there’s an equally vociferous group asserting that it’s mean to keep cats indoors, they must not have my number.)

Did I ask?

A friend puts up a note about special cat collars to prevent predation (fine–interesting information, I’ll think about it) and within hours the Facebook fur is flying: “Domestic cats are an invasive species and belong indoors” squares off against “If you don’t want small things killed around your home, don’t get a cat.”

I love to share information. I like to blare my opinions, as long as I can do it without starting a brushfire in my family or community. But I try very hard to avoid telling other adults how to live The Righteous Life According to Me–as if their experiences were the same as mine and their priorities ought to be–and I do wish they would return the favor!

On not being in Selma March 2015

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I’m a northern white liberal myself. I’ve more or less accidentally ended up living and working and breathing the furtherance of interracial understanding in the corner of America where I find myself. I kind of wanted to go to Selma.

Maybe it’s just sour grapes, but now I’m glad I didn’t participate in that orgy of unseemly self-congratulation. The enthusiastic righteousness of some of my erstwhile classmates and faraway Facebook friends is giving me hives: lapping up the sweet cream of being on the Right Side of History, flocking in fake marches and reveling in photo ops with picturesque heroes, taking selfies alongside the decorous survivors of the speechless dead.

It’s like a revival meeting where the saved gather together to smoke the hallucinogenic drug of spiritual complacency.

Where are the raucous ones who are still alive and still poor? Where, in all of this, is honor given to the wackos with bad hair, bad teeth, and cheap clothes, shouting angrily about today’s ongoing inequities? They’re not gone! I’ve seen them at gatherings of those who remain on the wrong side of the lines drawn by police, economics, reporters, and the Secret Service agents around the President.

These firebrands are the ones for whom assimilation was never the goal. They didn’t put themselves on the line so they could be allowed to wear suits and to follow some neutered program about when to talk, how to talk, or what to say. Where we’ve gotten to, we would never have reached without them. Now they face a more potent enemy than violence: they are ignored or disdained. As they were before the brief spasm of violence against activists made the news in the mid-1900s; as they have been since. It angers me to see feel-good liberals drawing away from the unassimilated soothsayers. Is it really true that the unforgivable sin is to not want to be middle-class?

My fellow white liberals, Selma 2015 is just a happy dance in one spot. We’re going to need firmer footing for the journey forward than is found in this morass of self-congratulation. We need brasher guides than these tidy ranks of survivors and the embalmed hippies singing 60s songs — last century’s warriors. Jumping on the easy, obvious, well-sponsored bandwagon at this late date doesn’t make our generation into any new band of warriors, either. The message of those who are dead and gone, and of those who live on in uncelebrated struggle, is that the people who grew up in a safety zone can accomplish nothing from inside it, even though — maybe because — it is largely in our minds. We are not really marching until we venture beyond that zone, to risk losing our job or getting tear-gassed or looking foolish, without knowing in advance which of those will happen. Selma in our souls should carry each one of us to a place where we struggle to fathom the strangers around us.

That Dress

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First there was the dress, then there was the furor, then the sneer: “Yes, yes; context dictates color perception; we knew that. Yawn. Who cares about the damn dress?”

I’m here to say the dress is important.

First, it’s a mistake to simply attribute this whole brouhaha to visual contexts—to point out that we interpret colors in light of surrounding conditions, yada yada. That’s fascinating stuff, but actually it’s not what this is about at all. The point was not whether blue can masquerade as white in some settings—the point was that two people looking at the same photograph at the same time had different answers.

I have a jacket that is one color outdoors and another color by artificial light, and it’s fun to have people try to convince each other of its color, when some of them have seen it only by natural light and the others have seen it indoors. They are initially disconcerted to find themselves at odds. But once they look at it all together, they realize how lighting dictated their perceptions, and they agree on its color.

The message of The Dress is the complete opposite, and the buzz it started is anything but frivolous. Driving this viral conversation is the eternally astounding discovery that other people are truly different from us. Not merely apparently different because of their circumstances—they are different, period. Over and over again, two people looking at the same screen said what colors they saw—then stared at each other and said, “One of us has got to be crazy, and it’s not me.” This harmless garment, appearing on our tiny screens without any distracting moral or political agenda, announced with brazen clarity the existence of irreducible differences between people who assumed they were alike.

If we want to get along we can’t accomplish it just by doing the hard work of learning to meet in the central arena of our supposed shared values. We must also learn to live in a world where some people will always see blue and black, while other people continue to see white and gold. Now that’s scary.