HER-2: an ongoing series
The Great Escapes
Alison:
When I was a kid and stayed home sick, I would make a schedule for myself. Even then, I was a little type-A. I would climb into my parents’ bed, look through the TV Guide, decide what I wanted to watch all day on television, and write it all down — creating my own appointment-viewing timetable for the day in 30-minute blocks. As I recall, it was a lot of syndicated stuff, cartoons, and game shows — Love American Style, That Girl, Family Affair, The Partridge Family, Green Acres, Sanford and Son, Petticoat Junction, The Jeffersons, Hollywood Squares, The Dating Game. I could go on. (And, in case you didn’t pick up on it, I’m a child of the 1970s). The all-day television marathon was a treat, a way to mitigate the boredom of staying home with a fever or a cold. It was also an escape.
With cancer, I have a new kind of schedule — one imposed from the outside — but still kind of comforting (at least in contrast to the chaos of the first weeks after my biopsy). Now there’s a plan. The next 5 months have been mapped out by the “scheduler” in my oncologist’s office. She scheduled my hell-week leading up to chemo (including the chemo orientation, the port placement in my arm, the liver biopsy, brain MRI, bone scan, PET scan, and echocardiogram). She also has scheduled all the chemo treatments, post-chemo hydration appointments, and follow-up blood work and scans (to make sure the chemo is actually working).
My side effects also seem to be on a kind of schedule. The oncologist warned me about this. There’s something predictable about the side effects, which I suppose is kind of comforting. Typically, the side effects after the first treatment set your path and give you a sense of what and when you’ll experience over the next several cycles — softening some of the unknowns and intangibles. For me, the fatigue starts right after treatment and lasts for approximately 10–14 days. I have slight queasiness the first few days post-treatment. Around day 5, my nose gets dry, sore and bloody. At the same time, I start getting stomach cramps and the runs. Day 7–8 my body and bones ache, and, then around day 12, my skin (and now scalp) breaks out. (Thankfully, I’ve steered clear of the other side effects, including extreme nausea, vomiting, pain, neuropathy, and mouth sores).
The side effects have definitely changed my routines and rhythms. Echoing my childhood sick days, I’ve found myself turning to familiar comfort — media. It’s another kind of hybrid treat-escape while sick. And a retreat from the cancer schedule. I’ve done my share of binge-viewing, and played pop culture catch-up with Orphan Black, Downton Abbey and Transparent,.
I’ve also done my share of social media binging. With all the time I’ve spent in bed and on the toilet, social media has offered a necessary distraction. No more 70s-style appointment viewing. In the middle of the night, I can simply reach for my phone, and silently scroll through my Facebook feed. I shuffle between Facebook, Instagram, and Twitter. I look at the personal status updates and family photos, political stories, carpool karaoke, and silly dog and cat videos. I have time, so I’ll even read comments and replies. When ads pop up, I take note of which companies are trying to data mine me…all as I wait for the drugs to run through me.
Judy and I have been talking a lot about data mining and social media in our class in the last couple of weeks. This week, we spent time exploring different ways people talk about social media’s impact. We had our students read the 2012 Atlantic cover story, “Is Facebook Making Us Lonely?” and the rebuttal in Slate. We also had them read from two scholars whose work has trickled into the mainstream — danah boyd’s It’s Complicated: The Social Lives of Networked Teens and Sherry Turkle’s Reclaiming Conversation: The Power of Talk in the Digital Age. We discussed both sides of the fence — the more utopian frame that argues for the liberating potential of social media in teens who socialize and virtually gather via digital networks and the more dystopian side that critiques the “always-on, always-on-us technology.”
Turkle’s critique is based on the way we use technology and social media. She argues that we often unconsciously isolate ourselves; we don’t allow ourselves to have downtime, to experience solitude or be vulnerable. We tend to show our happiest and best selves, but can’t seem to see through other people who do the same. We quantify ourselves based on the number of likes and RTs we receive.
These are the unintended consequences and paradoxes of what we call social media. And I’ve been feeling them pretty acutely since I started chemotherapy. While my social media binging feels comforting and a welcome distraction from my middle-of-the night chemo side effects, it also makes me wonder. Am I becoming a social media addict? Am I one of those “average American adults” who, according to Turkle, checks my phone every 6.5 minutes?
Truth be told, my social media surfing has made me feel alone, though the sitting in the dark in pain in the middle of the night doesn’t help. But it’s not just that. It’s also textbook #fomo. Having cancer means I’m missing out. I’m not necessarily pining for the experiences of my friends on Facebook or Instagram (though many are quite fabulous!). It’s my own life I’ve been missing. It’s my own experiences.
This week, I tried to change that, to reclaim some of my life that’s gone missing in the last couple of months. Turkle stresses the importance of intention. We have to use our technology with intention. We have to think about it. We can’t be on autopilot. I’ve realized that I need to treat cancer with a similar kind of intention.
About half way through each chemo round, the worst of my side effects tend to subside and I start to regain some energy. This week, I took that energy, and signed up for an 8-week course on “mindful self-compassion.” I also took an exercise class — something I was doing a few times per week pre-diagnosis. And, I made a point to spend time with family. I had lunch with my parents at their usual Saturday haunt, and visited my 99-year old grandmother. Going to the classes required intention. I signed up. I attended. I completed. Spending time with extended family also required a kind of intention. I had to make time. I had to prioritize them and myself over all the other things on my to-do list, and overcome the temptation to stay in my pjs and linger on my devices. I had to be willing to face my feelings about cancer, about suffering, about limitations, and about aging.
Writing about the cancer is yet another kind of intentional act — a time when I can also (sometimes obliquely) ruminate about these difficult topics. I started writing this particular post on a rainy Saturday morning when, miraculously, no one in the family had plans. My husband read. My younger son built with Legos, while my older one made a DIY alarm that sounds off when anyone walks in his room. We were listening to old vinyl — David Bowie, the Beatles, the Cars, and the Smiths filled the house. Together, yet doing our own thing. As I listened, I realized that these media relics offered another kind of comfort — a kind of nostalgia for media of the past. Add to that, nostalgia for the simplicity of a sick day home from school, when a full day of television viewing could be followed by a return to my everyday life.
Judy:
At our Journalism Faculty meeting this week, colleagues presented me with an enormous, hand-made greeting card, signed by faculty and staff, urging me to “Fight On” (the USC Trojan slogan) and to “Kick Cancer’s Ass.”
My first reaction, because it was such a surprise, was a rush of gratitude and a tear or two. My second reaction was disorientation. Hadn’t I already kicked cancer’s ass? A friend explained that they would have given the card to me sooner but it took several weeks to make the rounds for everyone’s signature. But since my lumpectomy was in November and my radiation ended in March, I now felt like a bit of an imposter, a cancer carpet-bagger, a drama queen. Especially compared to Alison, who is in the midst of chemo, still facing surgery and radiation, the complete opposite of a drama queen, and, by my definition, a REAL cancer patient. I am now in the SURREAL cancer category, where I am not even sure what verb tense to use. “I had breast cancer, but I’m all better now” doesn’t quite work. Because, really, how can I be SURE that I’m better? Once you’ve been diagnosed with cancer, even stage one, the word takes up permanent residence in your brain and immediately starts feasting on fear. How do I know there aren’t a couple of rogue cancer cells somewhere, plotting their next terrorist attack, biding their time until my guard is down? How do I know my breast isn’t Brussels?
And yet, it isn’t really correct to use the present tense, either. “I have cancer” smacks of melodrama and a pathetic bid for sympathy. And I will never, ever, use the word “survivor,” since I think that should be reserved for people who have had near-death experiences and lived to tell about it. You know, like the people who survived the Titanic, Hiroshima, 9–11. Or, in the cancer world, bone marrow transplants.
No, “survivor” won’t do. Perhaps I should coin a new term. “Cancer commuter” has a nice ring to it, as though one had stepped on the wrong bus, taken a rather uncomfortable, bumpy ride, then hopped off and resumed going in the original direction, suffering only from a mind-numbing fatigue. But that is Denial speaking, the little voice that wants to pretend none of this ever happened. The same voice that suggested to me, after receiving that get-well card, that I should make it quite clear that I was “over it,” thank you very much. The voice that said I no longer had a right to contribute to this blog. Alison talked me out of that, assuring me I still have important thoughts to contribute about my inner demons (also, this blog is called HER-2, and the whole pun would go to hell if I dropped out).
That was definitely the right button to push, all right. I could set up shop: “Inner Demons R Us!” A friend of mine once called that nasty little voice of self-derision his “inner turd.” It’s the same voice that entices you to run away from those uncomfortable feelings, to have a drink, eat some cake, shop-till-you-drop or whatever satisfies that “itch” until, of course, you hate yourself for having that drink, that piece of cake, that “must-have” item you can’t afford. As a sober person in recovery (25 years, people!), I can’t indulge in the first, and I am pretty good at resisting the others, as well. But that leaves me sitting in my own stew of discomfort and fear.
Which brings us to meditation.
Alison mentioned that she is taking a meditation class in mindfulness. I have been meditating daily for some time now, and it saves my ass, even as I sit on it. Sit and simply breathe and let those thoughts swirl around me, without sweeping me away. The poet Gary Snyder, a longtime meditator, writes:
“Meditation is not just a rest or retreat from the turmoil of the stream…. It is a way of BEING the stream, so that one can be at home in both the white water and the eddies.”
It is astonishing to realize how often I still try to swim against the current. The second I let go and just observe what’s happening in the moment, the less anxious I become. And yet, in my fear of this Thing-I-Don’t-Really-Have, this Thing-That-Might-Come-Back-and-Get-Me, I can still latch onto all those old escape plans that never work. I latch onto resentment over a perceived slight at work, anger that my GPS navigation system took me on a ridiculous detour (Damn you, Waze!), and my all-time favorite: the maudlin re-living of an old heartbreak. Such delicious escapes. But over and over again, I have to be slammed into the understanding that there is no escape. I know, I know, “no escape” sounds so negative! “Acceptance” is much more, well, acceptable. Meditation teacher Jack Kornfield talks about this state of acceptance in terms of equanimity, or “the serenity to accept the things we cannot change.”
“Equanimity is a wonderful quality, a spaciousness and balance of heart….We can feel this possibility of balance in our hearts in the midst of life when we recognize that life is not in our control.”
Life is not in our control. Duh. But writing this blog has, at least, been a way of exploring that fact. Poet Gary Snyder again:
“Traditions of deliberate attention to consciousness, and of making poems, are as old as humankind. Meditation looks inward, poetry holds forth. One is private, the other is out in the world. One enters the moment, the other shares it”
Our blog is not poetry, but we aim for pretty good prose. And at its best, it springs from the truest part of ourselves, the part that wants to share moments of insight –whether it’s tedium or fear or joy or gratitude. The whole enchilada, as they say in California. As we teach our students to communicate in truthful, ethical and insightful ways, we are surely teaching ourselves.
Simply writing this has put me in a more equanimous place. “Equanimous” is not a word, actually, but I like the way it sounds, so I refuse to give it up, no matter how many times “autocorrect” lets me know I’m wrong. Meditation, now that I think about it, is a kind of “autocorrect” to our neuroses, those “inner demons” that try to wrest control of the wheel and steer us back to fear and self-pity and denial. I know those neighborhoods well and visit them all too frequently. And will again. Because that’s the way it goes. Whether I had cancer or have cancer. Equanimity doesn’t give a damn about tense.
