I Have Been In a Cattle Chute and Got Tattooed without Consent, Or, If Someone Shoots At Your Feet, Dance
Everything for me right now comes down to a tiny little blue dot between my breasts that could be mistaken for a freckle were it not dark blue, new to my skin, and a mark I didn’t give consent to have during a time when I have very little control over my body.
As I’ve said to a few of you the last month, having cancer is like starring in a horror sci-fi film you didn’t agree to star in, but if you don’t play the part, you die. As in the black and white Westerns of old, if someone shoots at your feet, you dance.
After working out about three weeks ago where to have radiation therapy (The Cooper Healthcare MD Anderson Cancer Center in Camden, NJ) and how much of it I was to have (four weeks, every day, Monday through Friday, 20 appointments in all, a 90-to-120-minute effort each day or essentially a full week of work) and when in the calendar and in what time of day (eight weeks after my surgery, the week of June 15 until July 10, sometimes at 7 a.m. and sometimes at 5:45 p.m., at their discretion), and what the effects might be (skin irritation, tiredness—especially cumulatively—or nausea) I had a little bit better of sense of what my summer was going to look like.
After I got those 20 appointments in the calendar, I resumed activities I’d previously taken for granted, such as scheduling work meetings more than a week in advance or taking a long weekend away to visit family, and made peace with the idea I wouldn’t be attending any conferences to catch up with my colleagues and talk about ideas I care about. No Braver Angels, no Dissident Fest, no Heterodox Academy. I have the equivalent of a radiation ankle bracelet on. My Saturdays and Sundays are my own, but The Beastie owns the rest of the week.
Just in advance of putting together the wheres, whats, hows, and whens of the radiation, I was also waiting for what seemed like way too long for my oncotype score to come back because that’s what was going to determine if I needed a hole punched in my chest into which they dump poison into my jugular to kill The Beastie—very nasty stuff. I’d previously thought I was claread of chemo and told you so. But I had to wait again, because in the treatment protocol, chemo precedes radiation. The score wasn’t in. No radiation planning until we totally rule out chemo.
I knew from the start I would have radiation eventually. I knew I would have to be at the hospital every day for weeks but, again, during the time I was waiting I didn’t know when it would start or what time of day it would be and I couldn’t really schedule anything and I was starting to get pretty cagey. I definitely cried at the dentist because after 20 years of going there they couldn’t figure out my insurance on my behalf and made me call Blue Cross again myself from their waiting room to verify my benefits for… a teeth cleaning. I started to lose it. I was crying at the dentist at 9 am and I still had two oncology appointments to go that day, after which I was cleared of chemo and cried again.
You want to know how I am? That was all the first two weeks of June.
I also made a fiddle tune, and that was nice. Music keeps me grounded. The front patio is filled with plants, and that is very healing. People have dropped off soup and nasturtiums, Canna lillies and chocolate, eggplant and tomato starts, and weeded my garden, and sent trays full of cookies. Friends from all over the country are keeping tabs on how I’m doing. I feel very loved. That helps the healing, which I’ve got to spend a bit more time doing.
I have to remember that during the entire time I was figuring out the radiation plan and not planning much of anything else and crying at the dentist I was—and am—healing from my breast surgery. I’m healing well, but—it’s not healed. I am not healed. I have an angry two-inch scar on my skin, and a six-inch incision underneath the scar that bisects it, and I am not healed yet. It’s swollen and tender. I have not been able to go for a run in months. Runs are something else I took for granted, in part because I also hate them, but they also keep me sane. Walking is not the same as running. Talking and singing are not the same. Metered poetry and free verse are not the same. Walking is like talking. Running and dancing is the body reciting poetry or singing. We do the running and dancing for shorter bursts, but it’s more powerful and beautiful than the walking. I miss it.
In the cattle chute I am in—one doctor to the next without much coordination except on my part, knowing only the view to the next bend, often being given partial information even when it was available, or little explanation of the information without significant prodding, sometimes being given wrong information, sometimes being cut short even when it’s your scheduled time to discuss your treatment, being told horror stories from other patients that may or may not be relevant to your case—an uneasy feeling finally comes over you: You realize there may be a bolt at the end of this chute that no one has told you about, because it’s not their particular job to tell you about the bolt. The radiologist has a bend. The surgeon has a bend. The admin has a bend. The radiation oncologist has a bend. The nurse has a bend. The medical oncologist has a bend. The nurse practitioner has a bend. The radiation techs have a bend. We’ve designed cattle chutes to keep cattle calm before they’re killed. We’ve designed our healthcare systems to keep us stressed and vulnerable and afraid before they kill us. Where is Temple Grandin when you need her?
People try though. The nurses try. I applaud the nurse who told me a dirty joke to keep me from crying one day. I appreciate my surgeon’s skill. I appreciate the person who comes through the radiation oncology waiting room in the evenings with pretzels and water. I appreciate the guys at the valet parking, and they are surprised when I tip them. I feel bad when the radiation team asks me about my weekend because I’m barely able to remember what I did over the weekend much less smile at them. Where are my eyebrows, today, anyway? Has anyone seen them? The radiation techs notice when you cry on the table and they ask the next day if you’re having a better day and you say yes, whether it’s true or not. Bless them—their job is to deal with people like me all day long who have had better days, and some who don’t have many days left. I am grateful for the expertise of my doctors and care team, who will never see me at my best.
Before and after the appointments, I make the work meetings and pretend my scar doesn’t hurt and go to the picnic and pretend I’m not still trying to find a ride to the hospital on Friday morning. I conduct the workshop, edit the essay, write the grant. I wince out a smile when I show up at the hospital at 7 am, and I know full well it doesn’t seem like a real smile because it’s not: The hospital is the place you get to be not okay. I still feel bad.
When I visited with my parents the other day, my father said, “You’re not yourself. You’re not okay. I understand. You’re used to being in control, and you’re not in control of this,” and that’s exactly right. I am not in control, and the spring issue of the magazine is eight weeks late, and the budget to our fiscal sponsor is late, and I have a grant proposal due, and I have to trust people I don’t know with my care, and I have to jump through a lot of administrative hoops, because—don’t you know!—you can’t even start your radiation therapy as a woman under the age of 55 until you’ve had a negative pregnancy test. Even if you’re medically in menopause. Even if you have an IUD. Because it would be super duper bad if the radiation you’re receiving every day in any way got near a developing fetus. Something to think about. I can hear my friend, a fellow cancer patient, saying, “That shit ruined my life.”
I asked the doctor where to get the pregnancy test, since I’m with it enough to know that emerging from their bathroom with a drug-store bought jawn wouldn’t be acceptable, and I was told to go to “wherever you usually go for labs.”
I don’t have a place I go for labs. I have like six places for labs. The last time I tried to get a simple test scheduled at my primary care doctor, no one could figure it out. I realize the doctor isn’t going to be much help, and since I’ve been figuring everything else out I think that the pregnancy test is one I will ace, and friends—I do not ace it.
I fail the pregnancy test.
Not in the sense that I get a positive result—again, I am in menopause and I also had, until very recently, an IUD, but in the sense that I cannot figure it out. Eventually, eight other smart women both at Planned Parenthood and on my oncology team at Anderson cannot figure out how to get the test results conveyed properly in MyChart. I have the awful thought that we sort of need a tech guy right now, and I do not say it aloud to anyone, but I am definitely thinking it. I am a bad patient, and a bad feminist.
At the radiation planning session, where they map out where they are going to zap you, they allowed me to sign a waiver rather than producing an actual test for the time being, but I can tell this is not their first choice. I am being a bad patient. But the appointment goes on, and I am in a robe, and while I’m laying on my back in the robe on the machine with my right arm above my head grabbing a hand hold to keep me steady, looking at the strange, backlit composite photograph of fall trees on the ceiling, the tech comes over and cheery as anything says, “Okay, I’m going to give you three little tattoos so we can line you up more easily!” and I frown, and I say, “Tattoos?” and she says, “Yeah, they’re super tiny and they help us line you up,” and I frown and I say, “Do I have to?” and by now she’s frowning and she says, “It’s as small as a freckle and we need them to line you up, don’t worry, they’re tiny and it will fade,” and now I am feeling like I’m stressing her out by not complying and I am already the bad patient, and already a bad feminist, and so I say, “Okay?” as a question, because I don’t know what else to say. I don’t want a tattoo. It’s her job to give me a tattoo. I am keeping her from doing her job. I am being a bad patient again.
In the moment, it feels easier just to say yes. I don’t feel good about it. I don’t feel like I have a choice. I don’t have tattoos. I don’t want one. I don’t want a mark on my body to remind me of this experience. My surgery scar I don’t have to see when my arms are down. I can pretend it’s not there sometimes. As I’m second guessing things, it’s over. I am marked.
The bolt has struck in the form of a tiny little needle with a teeny tiny amount of blue ink. I look at it in the mirror. Everything that is wrong is now in that dot. They may as well have tattooed a third eye on my forehead because it’s what I see when I look in the mirror: Here is a tattoo to remind you are not in control of this situation. We have marked you. Keep dancing.
When I leave, I have to get back to figuring out the pregnancy test before my real radiation starts, and getting the IUD removed because it has progesterone and The Beastie likes to eat progesterone.
At work, in the meantime, I smile at the meeting, I give the advice, I make the decision. I silently seethe about The Dot.
When it comes to the pregnancy test, the peeing is easy of course. I tell the reception desk, the tech, and the nurse practitioner that I need to sign whatever consent I need to sign to have the test sent to Cooper. I am a breast cancer patient and I need the test to start my radiation. No one knows what to do in the system, or what to sign, so the nurse practitioner prints out a test result for me as insurance that I have what I need on Wednesday. This is a Monday.
Tuesday, the nurses at Cooper call. I tell them I have my result—I am being a good patient! Turns out that’s not okay. They need to see it in the system. Or we need to fax something. They call Planned Parenthood for the result. Planned Parenthood tells them I have not signed the form I need to sign to give them access to the results.
I breathe.
I breathe.
I breathe.
As you cannot easily speak to a human on the phone at Planned Parenthood and I’m still expecting I have to actually sign something, on Wednesday, I walk back to their office in the morning with a plan to not leave without the result showing up in the system for Cooper, and they still can’t figure it out. Luckily for me, and unluckily for her, the same nurse practitioner that saw me two days earlier is there. When she sees me, her face falls. “You’re back,” she says, knowing that this is exactly what I wanted to avoid—another appointment, and more time wasted.
We do our best. She is indignant on my behalf. This is not her job, but she knows I need help, and apparently no one else will deal with it. “I am persistent,” she tells me. She is. So the busy nurse practitioner spends an hour with me in between her patients trying to get the various electronic My Charts to speak with one another, which they refuse to do. Even pretending it’s 1985 (the medical industry loves 1985!) and faxing the result over isn’t easy because the autoreport in the Planned Parenthood system doesn’t satisfy Cooper for some reason and so she must manually type up an after visit summary and fax the printed-out paper to another facility and then call them, over the course of another 30 minutes, sometimes with both of us on hold on separate phones, to confirm receipt. We are transferred to oncology, and no one picks up. We leave messages. We call back. They send us to medical records, which everyone knows is where customer service goes to die. There is no chance of speaking to a person in medical records. We wait: Bend 13 of the cattle chute is sitting in a windowless office at Planned Parenthood at 50 years old and waiting with a busy woman who is the only one on duty for certain patient procedures typing up the results of your unnecessary pregnancy test so that later that afternoon you have the pleasure of driving to Camden, NJ to be zapped by radiation. (Don’t worry! The Dot will tell them where to shoot.)
You see at this point how important the pretzels in the waiting room are. The staff knows what the patients are dealing with and if our mouths are full, we cannot scream.
After the shocking results of the pregnancy test have finally been conveyed and confirmed—it turns out I’m for real for real not pregnant, cuing the checking of a box on a form that will satisfy the actuary in Kansas who devised this scheme to keep the hospital from being sued for irradiating a phantom fetus—I get to have my first radiation treatment.
They marked me up with a sharpie like a side of meat. I have little plastic circles over the sharpie so it doesn’t wash off. But the sharpie will wash off.
The Dot will still be there, though, and it makes me furious.
When I tell the nurses that I’m not happy about the process they listen. When I tell the doctor that I am not happy with the process, she listens. When I tell her they should keep pregnancy tests on hand, she tells me it’s against hospital policy. She tells me I could have walked across the street to their lab to get the test, which would have been really great to know the first time I asked her where to go, but also doesn’t solve the MyChart situation for the next person. If you think like an engineer, you think like an engineer, and engineers know that it is 2024 and not 1985.
I understand that The Dot won’t seem like a big deal to many of you, but it is to me. And while I thought about The Dot, and not being in control, and not having a choice, and being stuck in 1985, and the forced dancing so I don’t die, I told them my birthday again, and I let them place me on the table for the 5th time, and I made myself dead weight again so they could jostle me into place, and they told me again the red light was about to come on, and the bad pop music played over the sound system, and as they left the room they said—as they usually do to signal to me that they’re ready and they’re going to turn the radiation on when they are safely in the other room—“This is your treatment.”
This is my treatment.
I lay there, and I don’t move. The machine comes on, and I cry. In five minutes it’s over. I thank them. I leave. I put my sunglasses on so the guys at the valet parking don’t think I’m a wimp.
That night in bed as I was laying down to go to sleep, I told Walt how angry I was about the tattoo, and I cried.
You want to know how I am? This was the second two weeks of June.
I am halfway through. I think the second part will be better than the first part, but they told me to be prepared for the fact that the radiation has cumulative effects, and the two weeks after I’m finished, I may be more tired than I am now.
I’ll see what’s around the next bend of the chute when I get there.
Let me know if you want to recommend a good tattoo removal service. While I continue to slay The Beastie, I cannot fix the medical system, but I am thinking seriously of destroying The Dot.
Yours,
Heather, Bad Patient, Bad Feminist, Bad Attitude-Haver, Destroyer of Cancer’s World