This is the 5th in an ongoing series of posts bringing a critical sociological and feminist lens to my own experiences with endometrial cancer.
A member of my support group for women diagnosed with endometrial cancer noticed that I tend to express more anger than others in the group. Her observation was spot on: Most of the other members have been in cancer land longer than I and seem to have adjusted better to the norms and expectations. Or perhaps they have just become more resigned. She went on to muse that perhaps I am having a harder time because I teach a course entitled Death and Dying. No, I explained, teaching that course has made me more comfortable thinking and talking about death. My “problem” I told her, is that I research and teach courses on healthcare policy and practices. I simply know too much about the ugly underbelly of the system.
Indeed, I planned to use this post to express my rage at the lack of political will to address the environmental triggers for many cancers, at how the already underfunded research on gynecological cancers is being hit hard by the Republican party’s “efficiency” and anti-DEI policies, at how the two entire floors of the Dana Farber Cancer Center dedicated to “women’s cancers” remind me that our society seems to be okay with cutting up women’s bodies, and that a century into modern medicine we still treat cancer with slash, burn, and poison.
That was the plan. But treatment #3 got in the way.
Dana Farber Cancer Center in Boston is what sociologists call a total institution; that is, a self-contained facility where similarly situated people (for example, patients), cut off from the wider community for a considerable time together lead a formally administered, and regimented round of life. Total institutions tend to be hierarchical, with clear markers of status apparent in clothing, titles, and interactions. Privacy and individual choices are limited or non-existent, and outside identities and values are obfuscated and irrelevant. The “total-ness” of total institutions sucks in all who enter, eroding the will to question the institution’s created reality.
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At large cancer centers, like Dana Farber, systems are put in place to efficiently process patients through their treatment sessions. Here’s the routine as I experience it:
Check in on the main floor where I’m casually asked if I have a fever or other covid symptoms and get a sticker to put on my shirt clearing me to go on. (Staff don’t wear those stickers.) Take the elevator to the second floor where I check in for blood tests and get a wrist band with my name and birthdate (this wrist band will be checked at least a dozen times during the day – I suppose to verify that I am who I claim to be, or perhaps out of concern that I’ve forgotten who I am) and a little badge (like the ones at Cheesecake Factory or Olive Garden) that lights up when my turn comes. I sit in a room with other patients waiting to be called in to the laboratory area. When my turn comes a nurse or phlebotomist struggles to find a “good” vein that will hold the needle which also will serve as the port for the chemotherapy infusion later in the day. This time the nurse criticized my veins for being too small, blamed me for flinching and causing the needle to fall out, and finally managed to secure the needle into a particularly sensitive place at the base of my thumb.
Next step is to walk around aimlessly for 45 minutes waiting for the blood test results.
Last time I thought to use the 45 minutes in a positive way by visiting the “Friends Place” where hats, wigs, and other cancer paraphernalia are sold. I’d promised a friend that I’d give a wig a try and set out to keep that promise. “Friends Place” was empty except for a salesperson sitting behind the counter. I asked if I could try on a wig. She told me that I’d need an appointment. Looking around the empty shop I asked if I could make an appointment for five minutes from now. She said, “Oh no. The woman who fits the wigs is booking out at least a month from now.” I wonder if in another month I’ll care about how I look. I’ve noticed that very few patients wear pretty hats or fashionable wigs, nor do they sport the bald pates that, at least in my experience, people compliment as a sign of my bravery. Mostly patients wear a standard, plain cotton cap, gray or beige, that is handed out for free.
This time I decide to find a bench outside where I could sit and cry while waiting for the test results. I must not be fully socialized into the cancer patient role: I’m still surprised that no one else is crying, at least in public.
Results in, I take the elevator to the 10th floor where I check in (again) and head over to the large waiting room designed with clusters of chairs set up as comfortable conversational nooks. Rarely, however, do I see or hear any conversation. Mostly, women sit looking at the floor waiting for their names to be called.
A medical assistant calls “Susan S”, checks my wristband, and measures my blood pressure, temperature and weight. Then I go back to the large, quiet room and wait to be called in to see the doctor or nurse practitioner. Today it was the nurse practitioner, an attractive young woman with thick wavy hair (a contrast to my bald head) who energetically greets me with a big perky smile, asking “How are you doing?” Going off script, I scowl and answer, “How do you think I’m doing?” She has the good grace to look abashed. A short conversation in which we talk a bit about chemo side-effects and scheduling; no one mentions the reality that the treatments are designed to delay death by a few months – my cancer is incurable. As I get up to leave, she remembers she needs to listen to my heart and lungs which, she tells me, sound fine.
I walk down the corridor to a desk to schedule my next appointment and then back to the waiting room to sit until I am called in to the infusion area. A smiling assistant checks my wristband and helps me settle into a comfy lounge chair. She brings me a warm blanket and asks if she can get me a snack while my nurse for the day sets up the first of a succession of infusion bags. My nurse, for no apparent reason, has been assigned to sit at the end of the infusion area furthest from my cubicle. For the next five hours I scroll on my phone, doze, and try to remember to suck on ice chips that may or may not ward off the dreaded mouth sores that plague cancer patients. Every half hour or so my buzzer goes off announcing that one infusion is finished and it’s time to plug in the next one. Each time another nurse comes in and tells me she’ll go and get “my” nurse to make the change.
Finally, the last bag is empty, and I am dismissed. The standard treatment these days includes a variety of drugs that prevent nausea and other nasty side effects for the first day or so. As a result, most of us leave the treatment area fatigued but otherwise feeling okay. The nice nurses and doctors don’t get to see us after those good drugs wear off.
I arrive home feeling disappointed, humiliated, and disoriented. Just one day in the total institution of the cancer center I’ve lost my internal compass. My husband asks what I want to eat, and I can’t think of anything. I know I should check my email – my colleagues in the Women and Incarceration Project are urgently drafting responses to Massachusetts’ Governor Healey’s surprise plan to spend $360,000,000 renovating a women’s prison to make it “trauma informed” and “state of the art”, but I can’t summon the energy. All I can think about is that I didn’t even get to speak with my doctor. I feel like I’d been processed through a factory. “Patient-centered” is not even a buzz word. But I’m too worn out to be angry.
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I don’t actually know if other women are angry. All I know is that I don’t see it. At Dana Farber I see resignation; patients following the pre-ordained regime and taking their assigned place in the institutional hierarchy. In my support group we share good news more than bad, and we try to encourage one another to remain hopeful. Maybe we are afraid to express anger, that the oncologist, or the scheduler, or the nurses, or the cancer gods will punish us in some way. But what I do know is that anger can lead to action; resignation leads us nowhere.