In Danger

by Josepha Dietrich

  My name was called and I went over to the middle-aged nurse to go through my particulars one more time before being admitted for surgery. She would check my weight (53 kilograms), my height (163 centimetres) and my blood pressure (86/60) before finally admitting me to the ice-cold pre-op side behind the European foyer.

  Do you know what procedure you’re having today? she asked.

  Oh yes, I knew.

  My breast surgeon, Dr Wilkinson, a reserved man who drove an old Valiant to work, would look down on my unconscious body, take a scalpel from a nurse’s hand and cut into my right breast. He’d start near the cup of my waxed armpit to perform the lumpectomy, to preserve the skin on my breast.

  He’d inject a kind of blue dye into my tumour and watch it spread down the lymph tentacles to perform the modern sentinel node biopsy. All the subterranean blue ones he would cut out of my body. Part of my tumour would be sent to America as I was a randomly assigned control subject in the BETH trial, which measured survival rates and the use of a drug, Avastin, on women with the HER2 gene.

  For the next few years I’d get used to this. My cancer or, later, parts of my organs and tissues were outside me and in a dish. Packaged for transport and marked with information for an anonymous professional to slice into and analyse.

  I often thought of all those pieces of me, the incisions and the excisions, bits passed to pathologists for testing or thrown into an industrial bin to burn to ashes that would puff out of the back end of a hospital. Although the only surgery where I would wake lighter due to the quantity of organ tissue removed was over the horizon – my double mastectomy. (Before meeting Dr Wilkinson I had already decided to have my breasts removed. It was the clearest decision to make – breasts develop cancer: get rid of them.)

  My mother’s bodily ashes I split – one portion under a gingko tree, the other lot into a stupa. Most of her is buried under the ancient species of maidenhair tree on my in-laws’ former property. She grows on someone else’s land now. The epitaph engraved on a brass plate in front of her contains the last two stanzas of Mary Oliver’s ‘In Blackwater Woods’ poem:

  Look, the trees

  are turning

  their own bodies

  into pillars

  of light,

  are giving off the rich

  fragrance of cinnamon

  and fulfillment,

  the long tapers

  of cattails

  are bursting and floating away over

  the blue shoulders

  of the ponds,

  and every pond,

  no matter what its

  name is, is

  nameless now.

  Every year

  everything

  I have ever learned

  in my lifetime

  leads back to this: the fires

  and the black river of loss

  whose other side

  is salvation,

  whose meaning

  none of us will ever know.

  To live in this world

  you must be able

  to do three things:

  to love what is mortal;

  to hold it

  against your bones knowing

  your own life depends on it;

  and, when the time comes to let it go,

  to let it go.

  Before burying the ashes under the gingko tree, I had gone to Chenrezig, a Buddhist institute north of Brisbane. That day I was all raw nerves. I had Mum’s recently cremated ashes tucked under my arm like an infant; the mature bamboo creaking and clanking its trunks was another world death knell: death worked towards by the Buddhist practice of acceptance. I do not believe in renewal of a soul in the form of reincarnation, but the practice of calming your chattering mind and compassion and love – the hard-worked-for ‘look to yourself; on the mat’ type – has much value for me.

  The smaller portion of her ashes was potted into a Tibetan shrine. She has settled there these past ten years among others in Chenrezig’s sub-tropical gardens.

  Three days after my surgery Dr Wilkinson phoned me with the news. The operation was successful. The margins were clear.

  I repeated what he said, to clarify I understood it and to let B hear the results. We sat, hunched over, on the end of a single bed in our spare room. It was already afternoon and we hadn’t bothered to open the curtain to let the light in. The door was closed and we could hear B’s auntie on the other side entertaining our son in the lounge room. I didn’t say much so I could absorb what the surgeon was saying. I swallowed hard. His words came to me down the line as if by parachute – what was landing in my world?

  But the surgeon was still talking: I removed nine lymph nodes from your armpit. One of them had a four-millimetre cancerous tumour. He paused. That’s very small.

  He told me when he held my lymph nodes in his hands they’d felt enlarged. This worried him, thinking all nine of them might be brimming with cancer cells flicked off from my breast tumour. I thought of the dried seaweed I’d picked up as a child from Sydney beaches. Dark green strings of discarded sargassum, which I imagined as mermaids’ pearls. When I squeezed them between thumb and forefinger the pearls would give a satisfying pop.

  Bugger, bugger, bugger, I thought.

  B held my hand.

  I asked the surgeon about the chances of the cancer spreading to the rest of my body. My voice was weak.

  He spoke plainly, and I was grateful. I can’t answer that, he said. Even your oncologist likely can’t if there’s no clear tumour. We’ll do a CT abdominal scan and a full bone scan this week. With cancer tumours they can be in your lymph nodes, caught early and never rear up anywhere else, or it travels directly into your bloodstream, metastasises and kills you.

  My head jerked away from the receiver. The words lit up in front of me: I’m going to die. And before my son is ten.

  There’s no escaping chemotherapy with these results, said my surgeon.

  I didn’t want to burst into sobbing tears, knowing that would quake B’s insides, after all that we’d gone through as a couple already: our return from France for my mother’s care then death, my near-fatal post-partum haemorrhage, and now the care of an as yet undiagnosed, high-needs baby.

  When a child’s spinning top turns, all the colours blend. At that moment I oscillated between I’m going to beat this and My life’s over so rapidly that my emotions swirled into a fusion of optimism and dread.

  They’ve caught it early though, right? B was churning through the information.

  I nodded. Yep. But my internal voice added to my list of fears and regrets: I’m fucked and I’m going to die without becoming an author.

  I had to put my ambitions on the back burner, again. When I had Celso, I put my Master of Arts in children and youth writing on hold. I finished the core subjects, a very rough draft of my novel and a decent draft of my exegesis, which examined how the hero’s pathway, the journey towards knowledge and resolution, was best explored in young adult literature through dystopian narratives. My exegetical question was: How has Ursula Le Guin altered the hero’s pathway in her high fantasy The Earthsea Quartet (1968–1990), to fit changing contemporary social realities?

  Writing was now, again, the last thing I could afford to think about. Suddenly I was in the life-threatened category of people, of stories that only happened to others, to friends of friends or in magazine articles – not to me. I had grade 2 invasive ductal carcinoma and my cancer was triple positive: it had increased levels of oestrogen receptors, progesterone receptors and the HER2 protein (or human epidermal growth factor receptor 2 protein). Thanks to having been my mother’s chaperone through her cancer days, I knew that after chemotherapy I’d go on hormonal therapy because of my cancer’s oestrogen dominance. But just as suddenly I felt a spear of determination. I could do thi
s. The job of chemotherapy and hormone therapy would be to cut off my cancer’s food supply. It was not going to get me. I was going to starve it to death.

  Body scans: what’s inside me?

  Look, let’s look at you

  crabbing disease that’s taking over

  my body

  one nip at a time

  I shook like I was standing on ice. The CT (computed tomography) scanner would laser-reach into my body, touch my soft tissue, stroke my rushing one-way valved blood vessels and bounce against my bones. The captured images from this internal sweep would show a medical expert, sitting in a distant room, if I had metastatic disease: Ms Josepha Ruth Dietrich, CT scan for mets – invasive bc.

  I was screened off zoo-style from the medical staff, who stared in at me through a large glass pane. The walls of this private hospital room were beige and tired compared to the one where I’d had my lumpectomy one week before.

  The bed in front of me was curved and slender, like a sleeping pod in some distant spaceship. I climbed aboard. The hospital gown protected nothing. I wore old, overstretched Bonds knickers and I didn’t care.

  Just stay still, said the CT scan technician standing by my side. Her manner was kind but businesslike. I could picture her playing volleyball.

  A sting, then pressure, and a radioactive substance was injected into my vein via the inserted cannula. A metallic twang infused my mouth as though I were swallowing silver.

  It’ll feel like you’re wetting your pants. You’re not, don’t worry, she said. She quickly turned and left the room, sealing the door shut.

  It was the machine and me. It was spinning wildly 30 centimetres from my face. A disembodied male voice told me, Hold your breath. The machine whizzed around my torso then stopped: Breathe, said the same voice.

  I hadn’t stopped shaking from the moment I’d entered this room. I worried the CT image would blur. Warmth spread into my groin. I contracted my pelvic floor muscles just in case I was about to pee myself.

  I’d consumed a litre and a half of some dodgy liquorice liquid and felt nauseated. A recurring theme throughout my treatment. The nausea and shaking had nothing to do with the liquid drunk or blood taken. I’d come out of the lumpectomy and sentinel node surgery one week earlier and the shock of being a ‘cancer patient’ was hitting home.

  The CT slowed down. I hope they don’t come out blurry, I said into the room, knowing the sonographer could hear me behind the glass viewer.

  That’s what I’m checking now, but all looks fine, said the sonographer through the two-way speaker.

  Does that mean my internal organs look clear of metastases, when she said all looks fine? That’s what I wanted to know.

  All done! You can get changed now, she said.

  I swung my legs off the bed and used a kindly pre-placed stool to get down.

  Then I was sent back to sit in a yellow-walled waiting room. I recognised it immediately because I’d sat in a place like this as a 23-year-old while my mother had her CT scan. That day the MRI technician came out with a look I’d come to know well. Medical staff were invariably discombobulated when my mother collapsed with anxiety. She appeared to be calm and confident; she was articulate and looked directly into your eyes. People assumed she had it together.

  And then the MRI technician and I were watching her emotional breakdown. My mother was sobbing, scared of what the doctors might find and the big medical machinery required to envelop her. Her physician needed a full bone and body scan. To get one my mother had to lie strapped down onto a thin bed as it moved into a hole in the wall. The technician looked unnerved; she flicked her gaze from my mother to me then to the machine. The concern could have come from not keeping to schedule, from the cognisance of a busy hospital day unfolding ahead of her.

  I can’t do it! They don’t understand, my mother had said.

  Her back was hunched over, her feet were planted firmly on the linoleum and she had a tissue over her open mouth. Her whole face seemed wet. I sat down with her and hugged her.

  I’ll hold your feet the whole time so you know I’m there, I said and made eye contact with the technician, who nodded approval then reached for the lead coat.

  I would ground her, something I’d done my whole life. She was safe with me. And I was safe with her. I was loved unconditionally and knew it. I would never leave her like her own mother had at birth.

  The MRI machine appeared claustrophobic; it was like watching my mother being posted into a crematorium kiln.

  Patients cry in hospital because they’re scared, because they’ve received bad news or simply because they’re ill. I was reminded that day that my mother’s crying wasn’t like anyone else’s. If the breadth of a mental health breakdown was a landscape, my mother sometimes appeared stuck in the middle of one, Wuthering Heights wild and on the verge of falling over a cliff.

  As an eight-year-old I wrote a poem that said my mother’s shoulders were made of fine-bone china. My teacher had me walk into the other classrooms with their low, metal-legged tables and read it aloud, as the other children stared up at me. I declared my mother’s vulnerability to all my young peers in my big voice.

  The world washed through my mother with its grief and joys. She told me she felt skinless most of her life.

  In our Sydney days, Mum and I lived on the top floor of a three-levelled home, owned by an architect and a social work academic who specialised in critical reflective practice around dying, death and palliative care. Mum once flooded the bathroom so badly the water leaked down into the architect’s study, destroying a project-in-process nicely displayed on his tilted drafting table.

  Are you trying to become a fish and swim away, Piscean? I’d said to Mum on discovering her wildly throwing towel after towel down onto the bathroom floor to soak up the water.

  She’d giggled, Yeah.

  During the 80s Mum and our academic landlord and dear friend had a lot to do with women’s rights around reproductive health. I went with Mum to a conference in Canberra, Liberation or Loss?, organised by the National Feminist Network on New Reproductive Technologies. I was 12 so I went into a well-run day-care-type setup on the Australian National University’s campus. That many women in one place meant that many mothers needed their children minded so they could give lectures, run workshops (like my mother did) and attend talks.

  During the writing of this book I approached our lovely one-time landlord (who became a family friend) for insights on my late mother’s feminist and adoption activism during the 80s and early 90s. It was a period of time when I was too caught up in my own childhood and early adolescence to remember or know how my mother, as an adult, operated in these other worlds. Your mother harnessed the pain of her own experience to advocate for social change, she said.

  I agreed, reflecting that I too leveraged my own experience, as my mother’s carer then later as a breast cancer patient, to advocate for better health outcomes for those affected by cancer. A different agenda, but one equally imbued with a need to make a difference where possible. Mum was driven to change the laws around what she called the black hole of an adopted person’s parentage because her own experience of this informed her very existence. She did not want women to experience shame and stigma, like her birth mother had, just for having a child out of the sanctioned environment of marriage to a man.

  Heather, our friend continued, was a policy activist who championed for good social policies that didn’t mirror the harm done by her own experiences, harm and distress that was ongoing. She acted against exploitation and commodification of women’s bodies. Though she had the imagination to be able to reach across her principled position, like me with my son.

  I’d babysat this friend’s adopted son and taken him swimming in the pool next to Luna Park. He was a sweet, gentle soul whom I’d loved. As a budding photographer I’d taken his picture as part of my portfolio to get into Mr Ko
vak’s class at the Canberra college I changed to in my last year of school. The focus was sharp and you could see the white squares of the window frames he sat next to reflected in his eyes.

  I guess political and personal practice don’t always speak together, our friend said. That’s likely the case for you and I also.

  Mum sat on the National Bioethics Consultative Committee (NBCC), formed in 1998 as an advisory committee to the Australian federal government. After the Liberation or Loss? conference the NSW Women’s Advisory Council formed a working party to push for a national body to oversee the use of new reproductive technologies – hence NBCC. Mum represented a feminist perspective on emerging technologies that moved beyond the then-current concerns about artificial insemination by donor (AID) to issues like in vitro fertilisation, surrogacy, genetic engineering and euthanasia. AID now seems archaic as a concern at all.

  NBCC disbanded the year we moved to Canberra: 1991. My mother and Sister Regis Dunne were the only two dissenters on NBCC’s final report endorsing legalised surrogacy. NBCC was reformed into a committee with a more medical framework and stands today as the Australian Health Ethics Committee.

  We went on to talk about her grandchild and my son. Our old friend’s Scottish burr made me smile. After all these years in Australia her birthplace still counted in her vowels.

  But now after my own CT scan to check for metastases I rattled off to the change room and got dressed. Then I returned to the waiting room for my full-body bone scan. I had the results of the first procedure in my hands, in a sealed envelope.

  I went alone to these and other tests because Celso’s level of care meant it was easier if he stayed at home with B, close to all the paraphernalia required to keep him going: compounded Losec in the fridge to control vomiting or at least reduce the scorching of his throat the vomit caused, spare nasogastric tubes in case he pulled one out, tape to secure the tube to his face, nappies, special formula bags …

  You’re skinny, said the assistant. The belt doesn’t usually fit all the way over. She continued, I’m doing this so you can’t move when the scanning commences, otherwise the bone scan won’t work.