This is not a piece about victory over cancer.
This is not to talk about fighting. This is the way I found through a thorny path. With gratitude, I dedicate it to my teacher, Shambhavi Saraswati.
There’s always a test. A scan, biopsy, and of course, the waiting period, during which time you try to pretend you’re not waiting. You try not to think about it. Cancer’s scary for many reasons, one being that both disease and cure decimate the body. sometimes, it’s not certain which is more fatal.
It’s not that I haven’t thought of dying. Truth is, I can’t stop thinking about dying.Years ago, my innards were ravaged with inflammation while skin peeled off my legs like strips of old wallpaper – I could barely walk up a flight of stairs. I had to give up the one thing I loved. When the future held nothing but more illness, I thought: maybe I’ll just slit my wrists, lie down in a hot bath, and die. Even so, thinking and strategizing how I might go didn’t prepare me for this: death may come not by my choice.
Which is why when the news finally arrived, after the fateful phone call, the oncologist meeting, after the person called a Nurse Liaison Coordinator dropped off a giant pink bag the color of peptobismol when I was about to go under for the installation of a port, i wondered…what’s it all about. I mean, just starting with the bag – filled to the brim with – wow! – an array of pink goodies like three pink pillows the size of a banana to protect your port from rubbing against the seat belt. That’s Portocath, not Port wine, though that sounds good, not shelter from a storm, though God knows you need it more than ever, but this gruesome large knob sticking out of your chest –
A pink notepad, “for making notes to yourself when you’re chemo-brained.” I’m going to lose my mind as well as my hair? Really? And a beautiful afghan to keep you warm while they’re poisoning you. Here the NLC confidentially tells the story of a young man whose mission in life is that no one go through chemo without a cozy afghan knit by demented color-blind grandmothers.
Well ok. I made up the demented color-blind part. What else? pink cotton gloves, a pink scarf, pink pen, pink tissues, baby wipes, hand lotion, and antibacterial soap. The only thing missing are the diapies. Thanks. Hey, nothing says “Breast Cancer” like a cute pink bandana on your balding head. Who knew Breast cancer came with accessories? Breast Cancer Barbie, here I come. Suddenly I’m propelled into a story and stage set I didn’t craft, in a culture bound by concepts of victory and defeat, where everyone expects me to Fight and Win. And if I lose? I’m not a fighter? Not a winner?
The week after the port was like boot camp, with batteries of tests to determine how widespread and vigorous — ie, hopeless — the cancer is. First up, Pelvic ultrasound with vaginal dildo. Woohoo!
Next, Breast MRI – lie face down with your boobs hanging in strategically placed holes as you go through a machine that sounds like a submarine being torpedoed.
Bone Scan: be injected through your handy Portocath with a dye so radioactive you have to sit alone in a room with a Danger Radioactive sign on it.
X-rays, a CT scan, more dye and a liter of water, only to be told “I’m sorry. You have a suspicious spot on your liver and pericardium” on a Friday. Just as we – my lover and I – got to the beach house a client leant for a getaway.
Waves crashing. Sun glinting. Gulls crying. Me, hyperventilating, while Life was doing Its thing. Now what? every cell in my body in a standoff between fight and flight. But there was nothing to do until Monday.
And somehow, during those two days at the beach, I realized — I could be happy right now. Yes. I had a new lover. An old friend turned new lover. We’d just started this relationship, and he was grinningly, sublimely happy because he’d waited six years for me to burn through two relationships until I finally, finally opened my eyes. And then, Bam! Two months into this new, shiny, goo goo eyed relationship, we get this. I felt so fucking bad I wanted to puke. He didn’t sign up for this. Hell, I didn’t sign up for this! WTF!?
Still, a soft voice, the not WTF voice, proverbial still, small voice, kept saying, so? So what? Here’s this man, the sun, ocean, your life, your circle of connections. Cancer doesn’t change these things. They’re still here, if you want them. So I made a decision. I would do Cancer and include my life, all of it – clients, students, friends, family. I wasn’t going to hide.
Back in Portland, the Pet scan was “unremarkable.” Never has “unremarkable” sounded sweeter to my ears. Hurray for being “unremarkable”!
I was almost excited to start chemo. Everyone at the clinic was so friendly! The long row of recliners, hot blankets, pictures of lavender fields. Poison administered with smiles and blankets, the chemo lounge. As venom dripped into my body they watched closely for life-threatening reactions. I joked, smiled, filmed it on my ipad – “Hi mom! Such wonderful nurses. See? Not throwing up yet!” I’m performing the role “Cancer” starring moi!
Weird feelings crept up by the second IV bag, three hours down. Tremors. Hot lead in my legs, in my lungs. As if I couldn’t get a full breath. This body this – I kept holding up my hand looking at it, and it didn’t seem like mine. Something had entered me, some alien was slowly taking me over.
If I thought too much about it, it made me want to scream, or cry, or throw up. I wanted this foreign stuff out. I was pissing froth. It burned. My flesh felt strange – as if I was liquefying from the inside, my texture changing, the inside edges of muscle softening in a sickening, old corpse way. Mouth numb, metallic. I am shaky. My heart pounds walking up hills. I hate it, but I would have to do it again and again …. How many more times yet to be determined. “Don’t think about that now,” I tell myself. One session at a time. It’s God entering your veins. Everything is God, and this is God. Before each chemo session, I offered it to my ancestors. Lit incense. Prayed. My friends came to chant with me as the chemo dripped into my body. May it liberate us all. It was the way I could make it tolerable, if I could only do it not just for myself.
Offering it up was a salve for the burning question – what caused this? My indignant, outraged voice yells Why Me? And the deeper implication, the lurking doubt, the place I always default to is: What did I do wrong? How did I screw up?
The worst part about self-doubt? it’s an open door, an invitation, to an avalanche of well-meaning messages from people, some whom you barely know, regarding your cancer, their cancer, their opinions about what caused your cancer and their assertions about what will cure your cancer. It is a veritable Tourette’s of random non-sequiturs that finds you fleeing at the very hint that yet another story is coming about someone who either cured their stage four cancer with crystals and raw food, or had a long, protracted, horrific experience before dying in agony, and they’re sure I simply must hear the grisly details.
I’m not sure which is worse: the miracle cures, or the disaster scenarios. Each is it’s particular brand of torture. The miracle cure tortures by provoking doubt that my chosen route – allopathic, ie western medicine – is somehow a failure of discipline, faith, imagination, and purity. I am copping out by not eating only raw food and denying forever sugar, honey, alcohol. Somehow, I am deficient.
The disaster scenario tortures through terror. This could be me. An endless round of chemo that lasts years, invasive cancers that require gruesome surgeries maiming my sexual organs. Long ordeals of pain and suffering ending in death. These stories make me want to buy a gun and kill myself.
Please, people!!! I know you want to help. But keep your stories and opinions to yourself! Thank you!
We thinking, supposedly rational human beings, love to use this wily mind to torture ourselves, second guess ourselves, split ourselves into a million fragments so that instead of one will, we have a thousand different wills and desires buffeting us like leaves in a wind storm on the fifth tier of Hell. Over the years I’ve learned many different practices. I could spend all day every day doing them. And if I did, then would I have avoided cancer? See what I mean? Yet again, proof that I am undisciplined, faithless, lacking in imagination, and not pure.
Great beings die of cancer too. If enlightened people get sick, who the fuck am I? Which doesn’t mean mantra, meditation, or prayers don’t work, but that the work may not have anything to do with making tumors disappear.
If we just do one thing, let it be to live from our hearts. Maybe we’re all trying to get back to Eden without realizing we’re already here. Wisdom traditions teach this. Poets tell us this. But we forget. We get lost. We get sick. Sometimes I think getting sick is actually the healthy response. Maybe we’re all sick — Sick and tired. Sick unto death. We keep going. Soldier on! Just do it! Until ….. We stumble upon our mortality and remember: oh. Right. This is temporary, this life.
When the dust settled around the fact of having cancer, I realized I didn’t want this to be defining me. Yet it would be naive and defiant to say that getting a cancer diagnosis is not a defining moment. If nothing else, it’s that reminder — I’m gonna die. It’s also a reminder to others that you’re not here forever. Even if after several weeks, you start living your life as usual, this new fact embeds itself like a grain of sand in an oyster and you begin to wrap yourself around it layer by layer. It becomes your new reality.
Suddenly The view shifts. You begin to see yourself within the context of others’ lives. I always felt alone, As if somehow, I was not part of the basic goodness of life. As if somehow, I had to earn the right to be here.
But there is a net of love that this whole time has been holding me, that tree, this glass, you. We’re all in this net together, all the time. It is so magnificent, so real and palpable, yet we go on about our days as if this weren’t so, and we suffer. Let me tell you, you are in a circle of loving arms. You and I have no idea what lives we’ve touched, what small gestures, words, and works have been made into a loving world that breathes with us and through us. It seems trite to say this, but this dark spot, this black hole of cancerous matter worm-holed its way through my blindness and showed me how loved I am. The precision of it defies explanation.
Cancer – a doorway to love.
Lavinia Magliocco scribbled her first poems on the back of a piece of cardboard around age 4. Then ballet captured her. After attending North Carolina School of the Arts and School of American Ballet in NYC she was diagnosed with Crohn’s disease and those dreams were temporarily derailed. She got an English Lit degree at University of Cincinnati and wrote for the Cincinnati Enquirerer, Antenna Magazine, Clifton Magazine, and unobtrusively while employed as a travel agent. After prolonged illness and a surgery, she returned to the barre again at twenty-seven, and with the help of Pilates, proceeded to defy expectations by returning to dance on the stage and eventually landing a job at the Metropolitan Opera Ballet in NYC, where she danced for six years. After moving to Portland in 1998 she established her Pilates studio, Equipoise- enlightened exercise LLC and continued to teach dance for Oregon Ballet Theater, Portland Festival Ballet, and other venues. She’s completing her book, As the Tutu Turns, and working on a performance art piece. She is stoked to have met Jen at Lidia Yuknavitch and Suzy Vitello’s The Writer’s Voice workshop.