Retaining agency in serious illness

02 Feb

This post is off-topic for this blog, but it’s something I’m passionate about. Read or skip as you wish.


Many of you reading this know that my dear SL partner, Jakob, has stomach cancer. It metastasized to his brain before it was detected and he’s gone through surgery, radiation treatment, and heavy doses of drugs. He’s out of the hospital now and feeling awful, but he’s alive and we’re so thankful for that. I’m grateful for every short conversation and I’m looking forward to seeing him in May. I’m trying to be supportive without shaping his narrative. If he’s exhausted, he’s exhausted. He doesn’t need to pretend otherwise.

My husband reminds me that I have a particularly good background for this situation. I was diagnosed with endometrial adenocarcinoma at age 40 and in the first year I devoured material on the subject of cancer: blogs, medical papers, ethnographies, philosophical essays, autobiographies, and research studies. I learned a lot and formed some strong opinions, later arguing at a conference that framing cancer treatment as a rite of passage (a theme I found in many pieces) did a disservice to the patient. I’m also vehemently opposed to using war metaphors, though they are hard to avoid, pushing patients to be cheerful, and the pinkification of November.

Recently I got into a Facebook exchange with an acquaintance of mine. She is in her early 20s, bright and shiny and enthusiastic, and she volunteers at a nearby cancer treatment center. I watched her posts for months without saying a word. “The patients who are still so cheerful in the face of this disease are my heroes!”  “How can I be grumpy when the patient I’m helping with chemo is smiling? What a heart!”  Finally, I wrote her a private message. I told her how much I appreciate her dedication to helping others and her optimism.  I asked though, how she felt about cancer patients who were crying or angry. Were they less noteworthy because they didn’t live up to her standard of behavior?  I suggested that she read Bright-Sided: How Positive Thinking Is Undermining Americaby Barbara Ehrenreich. Her response was unsubstantial, informing me that close relatives of hers have had cancer and… well, I don’t know what her point was, exactly, and I decided not to push.

I believe that telling someone to smile is an act of control and aggression. This has been recently debated around the topic of street harassment but it’s pervasive and vile in healthcare, too. I think it is a way of making patients compliant and less troublesome. Some people will be upbeat and optimistic throughout their treatment and beyond; I’m downright snarly sometimes but I usually kept my sense of humor and tried to be nice. Others will be angry, frustrated, depressed, hostile, or even melodramatic. They might not be as easy to understand or embrace yet I think it’s important that a person be allowed to retain his selfhood and personality, while still receiving treatment as complete and compassionate as that given to a sweet martyr. I hope that I never make Jakob feel that he has to act one way or another for my benefit.

Think of the glowing descriptions of patients with serious illness that you might have heard — the performances that win Academy Awards — and you probably think of words like brave, upbeat, cheerful, and strong. I can’t count the times I’ve heard the myth that patients with positive attitudes have better outcomes. In the research I reviewed, I found that attitude doesn’t seem to do a damn thing, but patients who feel some control over their health and decision-making do better than those who feel passive.

My adenocarcinoma would have been deadly as it spread, but I was lucky and it was caught early. I had very severe symptoms and even though I had to fight against ignorance and incompetence, I had a diagnosis within three months. In some things I was too passive but I’m proud that I stood up for myself in other areas. For example, I don’t handle needles well and after my surgery I was ordered to inject myself with the blood thinner Heparin, in my abdomen or thigh, twice every day for weeks. It was shockingly painful and left huge dark bruises on my legs. Before I left the hospital, I was so upset by the injections that I would burst into tears as soon as the nurse entered the room with the Heparin tray. So, I quickly decided, fuck that. I forced myself to get up and walk as much as I could. I did laps in the hospital, past the maternity ward that was cruelly on the same floor, and then walked slowly around my block at home with my husband hovering nearby as a spotter. It was hard and exhausting, but it was better than injections. The nurse assigned to me by my insurance company was horrified; my oncologist shrugged and said it was my choice. He’s a surly bastard sometimes but I like him. Honestly, I think the simple fact that I made a decision for myself and followed through was important to my recovery.

Jakob seems to be holding up ok, but I understand his feeling of helplessness. (I write knowing he might read this and that he encourages me to tell my own stories. I’m aiming for truth without a lot of his personal details.) He graciously credits me with deep understanding based on my own experiences, but I didn’t face anything like he is facing. I went through some similar emotional and mental struggles during times of uncertainty, but they were eventually resolved. Being castrated during my reproductive years — let’s not call it something more gentle, because it wasn’t — was very damaging to my body and mind, but it does not compare to the ravages of brain surgery and radiation.

Cancer is a particularly cruel illness because it is you. Cancer cells don’t come from outside the body, they are your cells, displacing their normal neighbors in their struggle to thrive and spread. Even if you have a well-integrated sense of mind and body, it’s hard not to fall into Cartesian dualism and see your body as a separate entity from your self. I’ve never been good at that integration and cancer made it worse: my body is this treacherous thing made of meat that lumbers about catching illnesses and needing mechanical repairs and looking lumpy under clothing while my mind rolls its imaginary eyes in frustration. My body is Lennie and my mind is George. My body is Ignatius J. Reilly and my mind is Sherlock Holmes. My ego has chosen sides, you see.

In about 9 months I can say confidently that I no longer have endometrial cancer. I’m not waiting for test results or a change in my health but simply the passing of my 5 year treatment anniversary to put me statistically into the “permanent remission” pile.  Jakob has stage IV cancer and his statistics are grim. When we talk about my visit in May, or even watching the first Formula 1 race of the season in a few weeks, he says, “I hope I survive.” Me too, dear.  Me too.


[About the tweet from Zoë Keating above: her husband has stage IV lung cancer that has now metastasized to his brain, and they are preparing for him to have whole brain radiation treatment. I can’t echo her statement strongly enough. — Update, Feb 20: Her husband Jeff passed away yesterday morning. So fast and brutal. #fuckcancer]


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