HER-2: an ongoing series
Getting “The Treatment”
As I went to the hospital for my penultimate radiation treatment last week — number 20 in a daily dose of radiation zapping — I was acutely aware that, across town in a different hospital, Alison was just starting her chemotherapy treatment, a treatment that would be much tougher and longer-lasting than my own. Our story still seems surreal, despite the all-TOO-real invasions of our bodies, not to mention our minds. We still have trouble wrapping our brains around this terrible coincidence: two women, co-teaching a course at USC’s Annenberg School, get diagnosed with breast cancer at the same time. “WTF” still crops up as the go-to reaction. Alison’s cancer, as it would turn out, is more aggressive and more advanced. My tumor was small, removed by lumpectomy, and labeled stage one, HER-2 negative (not as fast-growing as HER-2 positive, Alison’s diagnosis).
But back to my “treatment,” an oddly benign word for an assaultive, dehumanizing experience. It started when I showed up for my first appointment with the radiology oncologist and her team of technicians, which included the ubiquitous “scheduler” who would ordain the path of my life for the next month. I was fortunate, I was told, because radiation used to be delivered over a period of six weeks, but they had discovered that by doubling the dosage, they could deliver the requisite zapping in half the time. Lucky me! And the effects would come sooner as well: extreme fatigue, fuzzy thinking (no one actually said this would be a symptom, but my brain is sure of it), a reddened, blistered breast, and an unusual rash (I was told) that crept up to my neckline. I labeled that rash “collateral damage.” In fact, war terms keep springing to mind throughout this process — “scorched earth,” “ground zero,” and — in the lingo of the drone age- “surgical strikes.”
Before getting zapped, however, my chest had to be marked up for those precision strikes, like a war room satellite photo. This entailed getting several permanent tattoos, tiny dots at key locations so that the giant ray gun would be guided to the exact spot where rogue cancer cells might still be lurking and could be ambushed without hitting civilians in the vicinity (i.e. the lungs and heart). Then one of the technicians, armed with a felt-tip pen, drew strange markings all over my chest. I had images of a side of beef, labeled for market. “Will these marks come off in the shower?” I asked hopefully. “Don’t worry,” he responded (clearly missing my intention), “this stuff stays on the skin for weeks!” All these “treatments,” by the way, occur while the patient (see how I have begun dehumanizing even myself?) is stretched out on a long table in the middle of the radiation beam room, a table that has been decorated with pink touches here and there, as though that would camouflage the fact that it looks like it would be right at home in a sci-fi torture chamber.
Day after day, I would go through the same routine. Sit in the waiting room and, when my name was called, head to one of three dressing rooms. I was given a choice of a gown with long sleeves or short sleeves (the only personal touch, really, in an impersonal process). “Should I go long or short today,” I pondered, relishing this one fashion statement. Then a second wait, in the hallway outside the zapping room, until I was summoned. And even though the technician had just called my name, I would then be required to say my name and birthdate before crawling up on the table. Every day. It was like repeating name, rank and serial number as a POW. Perhaps we need a new term: POC.
Of course, this daily recitation had a point. Wouldn’t want to zap the wrong breast, after all. My radiation technologists –Massi, Peter, Jaime, et.al. — see about 20 breasts a day, so I found myself wanting to distinguish myself as the really INTERESTING breast-of-the-day. It occurs to me, as I write this, that I may have been suffering from Stockholm Syndrome, breast cancer edition. I may have been hostage to this impersonal routine, but I was determined that my captors would like me, really like me. I tried a few radiation jokes, all of which they had clearly heard before, since such sad attempts at humor would be greeted with — at most -a forced smile. All this nervous chatter on my part would take place while the guys maneuvered my chest markings to line up under the green laser beam shining down from the ceiling. “Give me a C-M roll,” one would say, as the other guy would pull me ever so slightly to the left. To me, the term for centimeter sounded like someone ordering a sesame bagel, which didn’t do much for my sense of personhood.
I have to say that these guys were about as warm and friendly as might be professionally appropriate under the cold and impersonal circumstances. And once I told them about this blog, the atmosphere warmed up considerably. After one session, they asked me to find the link on their computer. I was just typing in the URL address when the doctor walked in and caught me standing in my gown between two technicians and said, rather officiously, that patients aren’t supposed to be using the clinic’s computers. Never mind. I had re-asserted my humanity through the power of social media! Perhaps I could even work this into our class discussions on “participatory culture.”
I hope the radiation guys see this post, because they really do deserve kudos for kindness, even changing the piped-in music from hip hop (their choice) to classical (my choice) to calm me down. Or, now that I think of it, to just shut me up.
This week is my final treatment. I am planning to take cookies to the “team,” and then — after being zapped one last time –I am going to hit that gong in the waiting room with all my strength. I hope the sound travels all the way across town to Alison’s chemo clinic, drowning out the discordant notes of WTF that play, over and over again, in our brains.
For my first day of chemotherapy treatment, I decided to wear my anti-street harassment T-shirt that says, “Don’t Tell Me to Smile.” It’s a feminist refusal to do what’s expected. It seemed appropriate to use it in the context of my cancer too — facing and refusing another kind of harasser and harassment and fighting it on my own terms.
I’ve received a lot of advice about staying positive since I’ve shared my diagnosis. While my snarky tendencies may not always align with “positive” thinking, for the most part, I’d say I’ve been pretty successful processing all the cancer crap coming my way. Frankly, it’s hard to be positive all the time. Sometimes, I just need to wallow or feel shitty. And, that’s okay. It’s normal to have highs and lows, to have a good cry when hearing that the cancer metastasized, to feel anxious when waiting for test results, and to be only mildly enthusiastic when I hear “good” news (like I’m BRCA negative or that my brain MRI and bone scans came back clear). Because, guess what? I still have stage 4 cancer. And that’s a fact that’s hard to be positive about.
So, how do I process the social “requirement” to be positive? In the last month, I have undergone multiple tests and scans. I’ve had three biopsies (one breast, one lymph node, one liver). I’ve had separate MRIs of my breasts and my brain as well as separate “nuclear imaging” scans of my bones and tissues. I’ve had multiple mammograms and blood draws.
On top of all of that, I also had a foreign object put in my arm — a power passport — that will allow the chemo and other medications easier access to my veins. (Too bad the port doesn’t give me other powers like the Bionic Woman doll I played with as a kid).
While this “procedure” felt more like a mini-surgery, and still hurts 3 days later, I’m told I’ll be happy to have it in the long run. The problem: it’s hard to think of the long run when things are hitting me so fast.
All of the poking and prodding and the helplessness it engenders reminds me of an example I showed in one of my other classes a few weeks ago (when I was still in the closet about my diagnosis): Alexander McQueen’s 1999 spring/summer collection. It’s more performance art than catwalk. Model Shalom Harlow is situated on a circular platform that slowly rotates as two giant mechanical robotic arms randomly spray her body and the delicate white tulle dress with black and yellow paint. It’s an image of assault and aggression, with a tinge of misogyny. But, I also read it as commentary on gender and the body — what we will put ourselves through to be beautiful. When the robots stop spraying and Harlow is released from her circular prison, she walks toward the audience disheveled and disoriented, yet free and seemingly triumphant. A paradox, to be sure, but one I can feel right now.
The one thing that’s helping me cope (possibly even stay “positive”) is creating a feeling of agency despite the dehumanizing constraints of biomedical technologies, schedules, and medications. I’m good at getting stuff done, so now that I’ve been given a plan and a (not always convenient) schedule, I’m able to treat the cancer evisceration like a project. I liken it to a second (or third) fulltime job in self-care.
I’m a rule follower, but the list of dos and don’ts could easily lead me to become obsessive compulsive…use homemade baking soda and salt mouthwash at least 4 times per day, glutamine powder with cold liquid 3 times per day, wash my hands constantly. Throughout the various tests and procedures, I’ve also had to discipline my body in particular ways. Machines (and their technicians) have told me to hold my breath. To breathe normally. To be still. It makes me anxious. The perfectionist side kicks in…What if I’m not breathing the right way? What if I’m not still enough?
In some ways, the first day of chemo was a breeze in comparison to the tests that preceded it. There was only one poke of a needle into my still tender right arm where the port lives. And then, I sat and waited as my four-drug cocktail slowly dripped into my system. Because I was a chemo virgin, the nurses took it slow and gave me prophylactics to prevent allergy, nausea, and other possible reactions. I sat for 7 hours, took a couple of naps (Benadryl-induced), and chatted with family and friends as they came by. For one of the chemo drugs, I had to wear oven mitts with ice packs on my feet and hands for an hour. This supposedly prevents my finger and toe nails from getting blackened, ridged or falling off. We’ll see. Can’t really do much in this situation. No texting, no reading. Just people watching…waiting for the thaw.
As I looked around me, I tried to understand what this absurd experience is like for others. The large room where we all receive treatment takes up half a floor of a medical building. There are 32 patient stations, divided by curtains. The patients range in age and in condition. It felt a bit like an airport terminal, with patients coming and going as they finished treatments (clearly shorter than mine). I think I was there for last call.
When I got home, I was exhausted. I slept for a couple hours and woke up, thinking about the day and the weeks and months ahead of me. And I was back to that original question: how do I process the social “requirement” to be positive?
The academic in me remembered Barbara Ehrenreich’s Bright Sided: How the Relentless Promotion of Positive Thinking Has Undermined America, and I started re-reading it — specifically the chapter, “Smile or Die: The Bright Side of Cancer.” A critical take to be sure, but one I share. I’d rather be authentic than positive for the sake of positivity. And the best way for me to do that is to keep my snarkiness and sense of humor at the ready…especially as I await the to-be-determined side effects. One treatment down. Five to go. Bring it, just don’t tell me to smile about it!
