Being in New York

Before Nat passed (almost six months ago now) she had nearly completed one last blog post. While working on it, she’d entered her final phase of life, dealing with the struggle of a failing body and increasingly dire doctors’ appointments. Nevertheless, like the others, this one tackles the emotion and the difficulty of her illness with frankness, clarity, and, of course, her inimitable style.

Her blog has been a great source of meaning to me since she started writing it through to today and I spent some time wondering how and when to share this. Eventually, I decided that it was best to let her speak here as she’d always done. I’m sad she didn’t get to publish it herself, but hope you all enjoy connecting with Nat’s words again.

Below, you’ll find the final entry to Nat’s blog, “The Guest Room (The Baby Room)”

Warmly, Matt

When we made the Great Migration from our loft apartment in Greenwich Village to a two bed / two bath in Brooklyn, the movers were very direct with us. At least one of them one was – they were both Eastern European, but the younger barely spoke. The older shared his opinion frankly and irrespective of its relevance to the task we’d hired him for.

Our first error was living in Greenwich Village in the first place. It was, apparently, nearly impossible to find parking. The next neighbourhood, he said, should have better parking options or we would have to pay for all the time they wasted. I didn’t know how to remedy either their morning parking problems or how I could ensure better parking in our new neighbourhood.  I told him gingerly that I thought there was at least a driveway near our next place that they could probably block temporarily. He looked at me with the mild contempt he clearly reserved for those who knew nothing about moving or driving – let alone parking – a very large truck.

Later, he told me “I’m going to have to retape this filing cabinet.” I told him that was OK, wrongly assuming he was worried about the tape ruining the cheap finish. “No, it’s not OK. The way you have taped it, the drawers would have fallen out and injured us as soon as we picked it up.” I apologised, again conscious of my obvious failure to display even the most basic competence required to move apartments.

I busied myself with moving as much furniture as possible from our loft area down the stairs, trying to compensate for my incompetence with a large expenditure of energy. Perhaps his contempt was somewhat allayed because his next communication was almost friendly.

“You are planning to have babies?” I suspect he was tipped off by our decision to move to Brooklyn, abandoning our prime Village location overlooking the comedy clubs and dive bars of Bleecker Street. At the time, I was simultaneously offended by his question and perplexed by his ability to pin down our intentions when we hadn’t even told our closest friends.

Yes, we were moving to have babies. After two and a half years of marriage, we were – I was – ready(ish) to try for a family. Before even having babies, I understood Cory Taylor’s observation that to “become a mother is to die oneself in some essential way.” Matt had been ready sooner, but I was taking longer to adjust to the idea of motherhood. I had already experienced a radical loss of identity in moving to New York from Sydney to marry him – giving up my career, my country, my network, my status as a happy bachelorette. That loss of identity had felt like a death of self, and motherhood, it seemed “would be its own kind of death” as Cory Taylor described in “On Dying: A Memoir”.

So my readiness manifested in bite sized chunks that I felt I could measure out. I had my IUD removed first. I still wasn’t “ready” and so we followed that up by combining two largely fallible methods of contraception – the rhythm method and the pull out method – with the knowledge that we might fall pregnant. Then, I’d decided it was necessary for us to find the right apartment before I even got pregnant. It needed an elevator (for prams, and organic groceries for home-made baby food). An in-apartment washer and dryer was essential (an unaffordable luxury in most of Manhattan, but needed to deal with the every-day avalanche of poop, vomit, and poop and vomit covered baby clothes). A bathtub. A storage room if possible (for car seats, the pram, and storage of dangerous items like Matt’s ski collection).

The Brooklyn apartment met all my requirements. But, according to the mover, we were eminently unprepared to start a family. Our chipped particle board side table would shed fibres that I would breathe in to the detriment of my health and that of our unborn baby. The glass shelving in our bookcase would be pulled down by a climbing toddler and fatally shatter on top of them. We were, in his view, obviously far too ignorant of the dangers of the world to be good parents.

Nonetheless, everything else was in place. My IUD was gone. The apartment was perfect. Well, not quite perfect. For the first three months, we slept in the second bed room – the baby room – in our old bed next to the probably fatal chipped particle board side table. The master bedroom remained empty as we waited for the delivery of our new bed. I’d picked the design – a soft wing-back inspired king bed, for reading and for breast-feeding babies (of course I would breast feed) and big enough to share with a horizontally sleeping toddler.

Our new bed arrived in the same month as my first symptoms – a bright red stream of blood at the end of my urine stream. It would, of course, be a UTI. Except that it wasn’t. There was nothing obvious on the CT scan. For absolute certainty, a urologist would look directly into my bladder – but there was no urgency, I wasn’t a candidate for anything so serious, so I waited weeks for an appointment.

In the meantime, we talked a lot about turning the baby room into an office. We could sell our old bed. It would be easy, and we could change it back as soon as I got pregnant.  But I chafed at repurposing the room – even temporarily. Instead, we left it with our old bed and the chipped bed-side table. I bought a vintage table cloth to cover the chips, so that we didn’t compromise the health of our guests. We would maintain the status quo until I got a clean bill of health, got pregnant, and turned it into our baby’s room.

 

Then we discovered I was an anomaly. The urologist who looked inside my bladder saw a tumour, bulbous and vascular. She had said on the previous appointment that there was a 99.9% chance that “it was nothing”, but apparently I was in the 0.1% for whom it was something. My first surgeon – cold and uncommunicative – relayed the news that it was high grade but contained in the bladder.  I had a 30% chance that it would never come back, a 30% chance that it would come back, and a 30% chance that it would progress. He didn’t seem to care about the math or my feelings to a particularly high degree.

The two thirds chance it would come back or progress froze the second room, temporarily, into its guest room status. Friends and family came to visit for my operations and the six instillations of immunotherapeutic BCG into my bladder. It was good to be able to offer them a place to stay, and in the meantime Matt and I didn’t know what to think about when – if – we should resume the plan to get me pregnant.

Six months later, we discovered I was an even greater anomaly. The cancer had slipped out of my bladder and into my lungs and skin and lymph nodes. I was suddenly a Stage IV patient, with a historical long term survival rate of 5%. My parents booked a flight from Sydney straight away, and stayed in our second room while Matt gave me hormone injections so I could freeze my eggs before chemo started. I recoiled from every shot, sobbing with grief and anger because it felt like too much to plan four our first baby together when the average lifespan of someone with Stage IV bladder cancer was 18 months.

My fertility doctor was delighted that we obtained 24 eggs out of the process. But, in the meantime, the second room became more firmly frozen into a guest room. Friends began to stay there when they came to visit New York, and sometimes they’d say “that’s a beautiful guest room” and something would pinch inside my chest as I smiled and agreed with them.

Then we started having positive scans, as my body started responding positively to the chemo. We started to let hope (hope is a thing with talons) back in. It was still a guest room – but maybe it wouldn’t be forever. We started researching surrogacy, and our fertility doctor told us about an agency that sounded appealing. We met with them over lunch at Matt’s work. The food was average but they seemed caring and professional. They sent us through the paper work, and the outline explaining the fees. It was going to be expensive – much more expensive than the treatment of my cancer – but it felt like the kind of thing for which expense shouldn’t be a key factor.

We were ready to sign the contract when I started feeling sick again. I was exhausted, spending every day in bed. Even though I had finished the chemotherapy, the treatment was still eating away at my healthy cells and my bone marrow. My haemoglobin dropped to dangerously low levels (I had Stage Four anemia. Stage Five was death.)

We paused our plans again, reluctantly realizing that we needed more time for my body to recover from seven months of chemotherapy. We started the process again of making plans to plan: there would be another scan in December, confirming I was still tumour free. We’d contact them in January, which would give me plenty of time to physically recover. We could sign the paperwork with even more confidence that we were ready and all was well.

 

Then, in January, I vomited on the way to work. I started getting headaches and I struggled to get out of bed. I told Matt it was a virus. But he was worried, again, and we called my oncologist. In Urgent Care they scanned my brain and a doctor told me, with exceptional bedside manner “We found a lesion in your brain. It’s not curable.”

The guest room would stay a guest room. Matt talked about making it a home office, but all I could see for its future was a place for my family and Australian friends to stay as my illness became more severe and my identity slowly faded. I saw it as a room for a hospital bed, when I needed 24 hour care. The plaster board would stay, a fibrous menace. The vintage blue and orange tablecloth would stay. The beige ribbons that I borrowed from, I think, a gift of flowers would remain to tie the blue curtains back.

 

My eggs would stay frozen quietly waiting for a future that would not be coming.

I had been scared of motherhood when Matt first started talking seriously about Children. I was scared of its impact on our relationship. I was frightened of us losing our intimacy, of my resentment as I took on the physical and mental burden of raising our children. I was even more frightened of its impact on me – another death of my identity after I had worked so hard to re-establish it in the impersonal surrounds of New York. I was worried about losing the things that I valued more highly than anything else – time to read, time to get bored, time to eat out spontaneously.

Yet the more I talked about it with Matt, the more I realized that my fears were not as big as my desire to have this experience with Matt and my unborn child. I wanted to know what it was to love them and to love them as a family with Matt.

Through my first year of treatment, I tried to hold on to the hope that we could still build a family together, that all our guests would need to find a hotel room. Holding onto that hope hurt, but I kept it anyway, right up until the moment that the CT results came back and the doctor with his unique bedside banner told me that my brain lesions were “not curable”.

I held onto that hope for a short while even after that.  I wanted a family with Matt. I wanted Matt to have a family of his own. I hoped if we moved quickly, maybe we wouldn’t have to forego this experience together just because his wife – his wife who should be young and healthy – was unfortuitously, impossibly ill.

But Matt made it clear: he didn’t want to have a baby without me. He wanted me to be there with him as a mother.

 

I was twice depriving Matt: of the children he wanted and of the partner he wanted them with. I know, of course, that any number of things can derail our expectations: infertility, other illnesses, job loss, a car accident. But I see his friends raising children and I do not understand why he is the exception.

I see our friends growing families and sharing the life of their children: teaching them to ski, recording their obsession with diggers and tractors, playing in the shallow water with gum trees overhead. I do not know why my guest room remains empty. I have story books I want to read our children, values I want to teach them, loves I want to share with them. I want to face the confused hatred of a thirteen year old, and want to experience my own hurt the day they tell me not to hold their hand anymore.

I don’t have a word for this feeling. It isn’t resentment or jealousy. I love my friends who are mothers. I love them with their messy bathrooms and unbrushed hair and fear that they are doing it all wrong. I wonder if they have anxiously replaced all the fractured particle board furniture and their glass shelving. I watch them love with fierce intensity and I am grateful that I am a witness to their motherhood. I love that they share with me the tenderness and chaos of their lives, that they honestly share their confusion and exhaustion and hope with me.

 

Some days, I am good at distracting myself. Matt and I eat out, or watch TV with our bodies wrapped around one another’s on the couch. But the days let myself feel all the grief of my diagnosis and the constancy of the love he still has for me – not for any role I can fulfil, or for any of my component parts – then all of my insides rise up with the unbearable power of the connection and the chaos, the joy and the suffering, that we somehow find a way to live with.

Rahil was usually the tallest person in the room. The kind of tall that required stooping to hug you. He was basketball tall – from the bottom of his enormous sneakers to the top of his bright cap.

He was never shy of his size. He wore his frame in vivid colors, pink shirts, florescent orange shorts, fabulous caps covered in ferns or flowers. For a while, he sported a shaved head and an enormous beard. It sparked customs officials to pull him aside at every airport, as suspicious of his dark Indian skin as they were of any other person trying to carry themselves through the world with a hint of melatonin.

Rahil inhabited that physicality joyfully – loved to exercise, to dance, to hike and explore the world. But the main reason I’m telling you about his physical presence is because I want you to feel what it felt like to be greeted by him. Rahil – or just Rah, pronounced in one simple syllable like the sun god – didn’t ever meet his friends with a polite hello. Rah’s joy at seeing you reached some place in his body that was so deep and so full that I suspect he had an extra organ dedicated to it.  His whole body would welcome you, invite you into his company with excitement. It was hard not to want to sit down with him instantly and just let yourself be saturated by that joy. Doing so was a wise decision, inevitably. Because Rah’s second great gift was his attention. He was fully present with you, lit up by a curiosity that seemed almost obscenely out of proportion to how interesting you actually were.

He listened to you with all of that huge body, his attention sure, his questions pointed, his laugh coming, I think, from that same unique deep organ of his.  One of these conversations with Rah stayed with you when it finished, often leaving you with a sense that you were smarter, funnier, better than you had realized.

I think the only time I witnessed him in doubt was when he asked me what kind of engagement ring he should buy for my best friend. I wasn’t much help to him, as I’d never talked to her about it. But he worked it out for himself, and his proposal was beautiful – a whole ball of red string patiently unspooled on their apartment floor to spell “dis oui” (say yes) in the middle of a heart. It rained at their wedding reception, but they danced outside anyway, holding each other close under a clear umbrella. On the dance floor inside, Rah and his friends made it feel like the whole room was trembling as they jumped side to side in unison to Crank That (Soulja Boy), yelling out the lyrics together and making me wish I had been a part of the friendship group and the car trips and the late nights that made this mad and joyous movement possible.

 

When Rah’s car rolled on the rainy highway, the accident left most of his huge body unbruised. It was just his spine that was severed as the car tumbled on that slick road, just his spine in just the right place to still his breathing, his heart, his organs, his mind.

The world didn’t tremble when he died. His wife woke up later that morning to her normal alarm, she got dressed and ready for work, and didn’t feel the world vibrating with his loss. On the other side of the world, I didn’t register his death until I got the simple text from her that he had been killed in a car accident the day before and that she was heartbroken.

But once I knew he was gone, I started to feel the tiny shudder in the world that was his loss. His energy had filled a room, but his absence filled the world. It was there in the plane seat next to me as I made my way back to Australia to be with her. It was there in the places he had been, and in the places he would never go. Once I knew that he was gone, I could feel how the whole world had shifted.

After the funeral, after weeks spent quietly sitting with my best friend and her unfathomable pain, I returned to New York and left the spaces where he had been most present, the places that had heard his laugh, felt his touch. I left the space around my best friend, whose body seemed to ripple and shake with the fierce energy of his loss. But his absence came back with me to America, has stayed with me in the seat he doesn’t take at the cafe, stretching across the mountains he isn’t walking through, filling the street scene he would have captured on his camera. His absence remained as real in the places he’d never been as it was in the places he was known, expected.

Rahil, my friend with the huge love for humanity and a bottomless love for my best friend, had died. There could be no philosophizing. There was no meaning to make of his death, no reason for him dying before he’d had the chance to grow old with the people he loved. His loss was just that: a loss. An emptying out from the world of a profound, energetic presence.

Rah died six months before my initial cancer diagnosis, a year before we learned it had spread, two years before we learned that my brain was filling with tumors that would multiply and grow and crowd out the ideas and the personality and the memories firing through my neurons. He had been gone for two years before we were told that the doctors didn’t expect to be able to cure me anymore, gone for two years before we learned that the best they could do was try and prevent the tumors from killing me for as long as possible. Gone for two years as Matt and I hope for years together, but know we may only have months.

There is no philosophizing. There will be no meaning to make of my death, no reason for me dying before I had the chance to grow old with the people I love.

But there are no scales of fairness in the universe. Fates are not handed out to us according to what is just or right. We all know this, in theory. But Rah’s death, my best friend’s violent grief, wasn’t theoretical. When I learned I had cancer, I already knew deep down in my own body that good people have suffered fates as unfair and filled with suffering as my own. I understood on more than a theoretical level that the word “unfair” is inapplicable to my fate or Rah’s, to my best friend’s or anyone’s.

 

There is no making meaning of Rah’s death. I loved Rah. I loved him for his love of the world and the humans in it, for his intense curiosity, for his humility and his ambition and his laugh. I loved him because my best friend loved him, and he loved her.

There is no making meaning of Rah’s death. But he has given me courage at every step as I face my own fate. Rah went before me; I saw how complete the loss of him was; witnessed his absence in all the places he ought to have been; railed at the fact that the one person who could alleviate my best friend’s pain was permanently gone. And I have also witnessed how much he and his love still exists in the world.

I know from Rah that love is a real thing, a corporeal thing. That our brains keep it, store it, share it. Parts of our bodies will always carry the love we shared with the people we have lost. It is as real as cancer, as real as genetics, as real as the tiny branches in our lungs that pull oxygen out of the air.

Rah has become my older brother, my ancestor, my teacher, who stepped outside before me to show me that it will all be OK. Death is survivable, grief is survivable, because love is as real as death.

 

Doesn’t everything die at last, and too soon?

Tell me, what is it you plan to do

with your one wild and precious life?

The Summer Day, Mary Oliver

 

“The people we most love do become a physical part of us, ingrained in our synapses, in the pathways where memories are created.”

The Long Goodbye, Meghan O’Rourke

 

“The story of Moses’s death gave me a rich context for dealing with the death of my own Moses, one of the most influential teachers I’d ever had. Rabbi Hyman was truly larger than life… All of us who’d experienced his teaching loved him deeply. Midway into our second year in his Talmud class, Rabbi Hyman was diagnosed with brain cancer…

“I can’t remember who said, ‘You have to fight this. How can it be that you’ll never teach again?… How can we keep going without you?’  And he turned to me with a raised eyebrow and said ‘Leave you? Where could I go?’”

Yearnings: Embracing the Sacred Messiness of Life, Rabbi Irwin Kula

 

‘If you delve into ancient Buddhist writings, you won’t find a lot of exhortations to stop and smell the roses… Indeed, sometimes these writings seem to carry a very different message. The ancient Buddhist text known as The Four Foundations of Mindfulness – the closest thing there is to a Bible of Mindfulness – reminds us that our bodies are “full of various kinds of unclean things” and instructs us to meditate on such bodily ingredients as “feces, bile, phlegm, pus, blood, sweat, fat, tears, skin-oil, saliva, mucus, fluid in the joints, urine.”’

Robert Wright, Why Buddhism Is True

We don’t really have cultural stories to tell about the bladder. It is not the site of metaphors (we may be lily-livered, or strong-hearted, or even anal-retentive, but I know of no metaphors such as the ‘full-bladdered’ or ‘rarely-continent’). If you are lucky, an Australian might refer to you as ‘piss-weak’ in typically crude Aussie slang. But there are no romantic stories we tell ourselves about urine. Despite its sterility compared to other bodily fluids, it’s still considered unpleasant and even obscene. In an entertaining podcast with Tyler Cowen, Margaret Atwood reports that as recently as 1984, the New York Times specified that “[w]e could not call it piss. We could not call it pee. We could not call it urine…. So we ended up calling it bodily fluids, which was much worse in my opinion.”

The bladder is a functional organ, not the stuff of poetry.

This, to me, is generally a relief. There is no story to tell about why I got cancer of the bladder. It is a random place, most likely a random mutation. I have no family history to blame, and no doctor can identify a cause. I was not exposed to any of the known risk factors. I cannot blame myself, or my environment, or my family genetics.

But it is hard not to feel that some blame lies with my own body. It is a body I have diligently cared for: I ate well, never smoked, and my only regular vice was caffeine. I wore sunscreen, practiced yoga, and went on many sweaty runs. Yet my body seems to be repaying this care by doing its best to kill me. It has been hard not to feel betrayed and alienated by this inarticulate organism that carries me around each day while allowing cancer cells to proliferate.

Watching my seizures increase in frequency and severity had only deepened that sense of dislocation. It didn’t help that even the smallest ones manifested as an inability to speak, trapping my thoughts inside a body that refused to communicate them orally. When the doctors finally decided to hospitalize me for a 24-hour EEG, we expected to leave without answers – as had so often happened in the past. But this time, my body performed its most spectacular betrayal in the right place, producing a seizure so big that my hospital room filled instantly with an excess of emergency responders who attached oxygen tubes and rushed drugs through me intravenously while they called out “stay with me” in a way that seemed over-dramatic, a line from a TV drama. It was also unnecessary: I was staying with them. The seizure never reached the whole of my brain, so my mind was present throughout, a horrified witness of violent hallucinations of a body far beyond my control.

The day-long EEG became a week-long stay, and I was confined to bed at all times unless a nurse was present. The doctors added new anti-seizure drugs, and then added more. When I was finally discharged, my legs were so weak that I couldn’t walk the short distance to the door of my room.

We had gone in expecting no answers, but left with more information than we wanted. The scans I received in hospital showed that the immunotherapy treatment had failed to contain my tumors: in just one month, five new ones had grown, while several existing ones had doubled or even tripled in size.

The cancer cells in my brain have likely mutated to such an extent that they are barely recognizable as bladder cells anymore. Distant in shape and space from their origin, their only remaining function is their deadly proliferation. As my body mutely allows them to take over space that ought to be mine, I have responded by retreating from the reality of my embodiment. I could once lie in a yoga class and vividly imagine the oxygen I breathed permeating down through my chest, my belly, my legs, all the way into my toes. But recently it has felt safer to keep a distance, unbridgeable, between my imagination and the body that carries me unpredictably, dangerously. Safer to keep my emotions unembodied, no more than an intellectual sadness that works itself out through memorizing drug names and compiling to-do lists that cover the drugs I have to order, the weekly shopping list, and palliative care directions.

But it was always an illusion that I could somehow keep my body absent from my emotional and intellectual response to this experience. It was an illusion too that this would be healthier, easier somehow.

After my hospital stay and my scans, our doctors decided on a new treatment plan. We were hopeful it would quickly stabilize the tumors. I thought we had all the pieces for that new plan in place when I received a message that our insurer had denied coverage for the central, cutting-edge new drug. I knew that the hospital would appeal the decision, I knew that the doctors would find a way for me to get the drug, I knew we could find a way to afford anything that I needed to keep me alive. Yet my hope didn’t lie in what I knew. Before I finished reading the message my belly started to heave with urgent breath. Tears of fear and grief forced my mouth open. A band tightened around my chest and I knew it wasn’t a heart attack but knowledge – that place I thought was mine, was safe – didn’t have the power to diminish the pain.

Then Matt came into the room, and guided me onto the couch. He lay next to me, the left side of his body pressed against the right side of mine. He touched my heart with his hand and asked me to feel some of the stress transfer from my body to his. He brought me a square of dark chocolate and the taste evoked other times. I ate it and remembered how the sweetness would feel in my body. And while he lay next to me he told me what I already knew and I heard him.

The pain and Matt’s touch, the sound of his voice, the taste and the memory of the chocolate. They didn’t belong to one part of me. My mind and body were – are – fully involved in every aspect of my illness and my response to it.

In her fascinating book ‘How Emotions are Made’, Lisa Feldman Barrett describes the fallacious idea that it is our minds alone that somehow control our emotions:

“Interoception is your brain’s representation of all sensations from your internal organs and tissues, the hormones in your blood, and your immune system. Think about what’s happening within your body right this second. Your insides are in motion. Your heart sends blood rushing through your veins and arteries. Your lungs fill and empty. Your stomach digests food. This interoceptive activity produces the spectrum of basic feeling from pleasant to unpleasant, from calm to jittery, and even completely neutral….

“…the science behind interoception, grounded in the wiring of your brain, will help you see yourself in a new light. It also demonstrates that you’re not at the mercy of emotions that arise unbidden to control your behavior. You are an architect of these experiences. Your river of feelings might feel like it’s flowing over you, but actually you’re the river’s source.”

My body has not betrayed me. In fact, in all its miraculous complexity, it is somehow keeping me moving and vital in this world. Under the burden of brain tumors and hospitalizations, of severe kidney inflammation and seizures that steal my words and my breath, it comes back with healing, adaptability, new ways to be strong. The unpredictability arises from a body adjusting its essential functions in ways I will never be smart enough to understand. My body is finding new ways to keep me well even as it becomes more crowded with tumors that are solid, unyielding, without function or purpose.

As I find myself newly weakened by strong drugs and my week in a hospital bed, my muscles work to balance me and keep me upright. My hands, confused by tumors and seizures, still write out my thoughts in legible lines.

There is, in fact, no place of retreat from my body, no safe space where I can memorize drug names and compile dispassionate to-do-lists. But this is not a story of betrayal. Mortal and unknowable, my body has been adjusting its own complex system every day to keep my lungs filled, my blood moving, and my brain somehow calling on the books that I’ve read, the poems I’ve heard, the ideas that have excited me over many years. My intellect, trying to build an impenetrable fortress, will never exist outside its miraculous home. My body and mind are not just connected, we are – and will only ever be – inescapably and incredibly whole.

I had an appointment with my neurologist scheduled for 8:30am, and a second appointment scheduled with my nephrologist for 2:30pm. Since both were in Manhattan, I thought I would make the most of the gap by visiting my colleagues for the first time since the brain metastases had been discovered. I was missing my friends, and had been longing to reconnect with the purpose and camaraderie that work brings. It was invigorating to step inside the building again and see everyone. I gave upbeat updates, and we laughed and smiled about the challenges I was facing and the various things at work that hadn’t changed in the year I had been gone. They told me that I looked well, and I joked about the medically diagnosed “fat face” that came with my steroids.

And then, I was lying on the carpet. I didn’t know how I’d got there, but my boss told me I had just had a seizure and they had called an ambulance. Instead of having lunch with me, two of my colleagues accompanied me to the hospital. It was my first full seizure, and my response cycled through incredulity and disappointment. I had felt well, even energized, in the moments before I ended up on the floor. Once again, my body had reminded me that I could not anticipate what side effect or symptom would appear next.

The last month of my life has not been a time for planning or building. I have been sick – sick enough to go into urgent care once a week four weeks in a row. Before the seizure, the doctors had sent me in for fevers; for an episode when I couldn’t form sentences; for sharply deteriorating kidneys.

The hospital visits have not, by and large, provided answers about what is happening in my body. Instead, I am accumulating inconclusive tests, taking increased drugs, and waiting to see if we can recommence treatment. It is not just my body that is acting unpredictability. The tumors in my brain are as well – the latest MRI showed that seven had shrunk, but three had enlarged. So far, the doctors have no explanation for these anomalous three. Instead we are waiting for still more tests that may (or may not) provide some kind of understanding.

The result is a sense uncertainty that pervades not just the next few months of my life, but each hour of the day. I do not know what side effects might arise, or when they will come. I try to wrest control back by understanding what is happening in my body and why the doctors are making each of their decisions. But my neurologist recently suggested I was on my way to becoming a “professional patient”. I recoiled: I do not want my identity, my intellect, to be subsumed by this disease. I need a sense that I still occupy a space around the cancer. I want to remain a whole person.

There are other forces at work putting pressure on the edges of my identity. I feel it when people reach out just to ask how I am, or to send me notes or gifts unrelated to the kind of person that I am. They are, I know, acting from a place of love. But when my interactions with people are limited to conversations about side effects or the most recent scan results, I feel myself being obscured by the illness.

The pressure comes from the diagnosis itself: there is cancer in my brain. My mind is central to my idea of self in a way that my lungs, my kidneys, my bladder, are not. I fear changes to my personality, to my ability to comprehend the world, to my capacity to communicate with the people I love. I feel most alive when I am conversing, drawing connections, exploring insights. I fear losing such connections more than I fear death itself.

Pressure comes too from the experience of uncertainty, and the way it closes up my sense of being in time. There is much wisdom and peace to be gained from being present in the moment, rather than dwelling on an irretrievable past or planning for an unknowable future. However, some of the freedom and peace that comes from being present is the knowledge we are making a choice about where we place our attention. Right now, my world feels like it has been shrink-wrapped into this moment. The past is not a comfortable place for me to dwell, overflowing as it is with freedom and potential that I now find so circumscribed. The future is even more inaccessible. The plans I make are almost invariably cancelled. A weekend away from the city turned into a weekend in hospital. A planned Sunday excursion with Matt turned into a day at home, nursing post seizure fatigue. Even my attempt to have lunch with my colleagues turned into a trip to hospital. I wake up each day with just one day ahead of me.

Where do our identities live when our worlds shrink and shift so dramatically? What does “identity” mean when we are daily faced with its impermanence? How do I live a full life when I feel so close to losing the “I” itself?

We live most of our lives with the feeling that our identities are continuous – even though every interaction, every experience, has the power to shift and remake us. I experienced this in a dramatic form when I fell in love with Matt, and left behind almost all the external aspects of my identity in order to be with him. Being in New York as an unemployed new wife with no network of my own, I could not maintain the fiction that there was something immutable about who I was. Instead, I found that I could only find a sense of self by being deliberate about how I used each day. There was no essential “me” driving my behavior, only a series of decisions about how I would spend the time I had (as Annie Dillard writes, “How we spend our days is, of course, how we spend our lives.”)

The fragment of time we have now is also the whole of us, although we obsessively recall our past selves and plan ambitiously for the “us” that will fulfill our dreams tomorrow.

Now, I am again seeking to find identity by being deliberate in how I live in these fragments. I revel in the morning moment when I wake up next to Matt. I savor the times when I have enough concentration to read. I indulge my rebellious side by failing to respond to the bare “how are you?” messages that neither uplift nor inspire me. I delight in the messages I get from my family and friends with silly gifs or photos from their gardens or the latest updates on their lives. Connection and a sense of self comes with spending time with those people who see me as a whole, not just a cancer patient.

Living with the immediate sense of my identity as fluid means spending time repeatedly with the question of what matters. It is not an unfamiliar process, but one I have experienced at both profound and mundane moments in my life. I remember the dislocation I felt after graduating from high school and realizing that I could no longer rely on external approval for my own sense of worth. My first experience of living away from home compelled me to care for my surroundings (and my self) in a way that had rarely arisen in the uber-nurturing environment of my childhood home. And marrying Matt, with all the changes that came with that decision, stripped my values down to the barest essentials: love, connection, ideas. Re-identifying my values doesn’t mean starting from scratch every day, or remaking myself without reference to what has come before. The things that matter to me may, on revisiting, be unchanged in the fundamentals even as the way they manifest is being recast. Renegotiating values is not the same as abandoning them.

I still long for continuity in my identity. I want to make plans, to have insight into what is coming, to dream about a future together with Matt. I don’t want to lose my self: I want to be there for Matt and my family with all my intellect and love and resilience intact. But I can only add to my suffering by grieving a future before it is lost. I cannot know in advance what time holds for me, what I will lose and what I will gain. But I know I have time right now, to be in this world that contains such richness in every moment. That is, of course, the only thing that any of us have.

“It was as if there was a tide ebbing and flowing in and out of her house, depositing and withdrawing the flotsam of her old life. She had no alternative but to accept it, and to marvel, day after day, at what she found and lost, and then found and lost once more.”

– Elizabeth Gilbert, The Signature of All Things

Months ago, before the doctors found the tumors in my brain and hurriedly restarted treatment, I had purchased tickets to the launch of Maria Popova’s book ‘Figuring’. The event was scheduled for the Friday night after my first immunotherapy treatment, and I worried that I should give them up and spend the evening resting instead. But I was reluctant, as Popova’s events could be mesmerizing and profound – attending her inaugural Universe in Verse in 2017 was one of the best experiences I’ve ever had in New York.

Maybe, too, I needed something different from rest. I was having trouble processing the return of my cancer and the urgent re-imposition of my status as “patient”. The brain metastases had already curtailed my life in many ways. After I fell out of bed one morning, Matt was (sensibly) monitoring me much of the time, worried about the extreme fatigue post radiation as well as problems with my balance. The drugs, headaches, and fatigue together conspired against my ability to concentrate. I needed to rest and look after my physical health, but I also felt that something in the middle of me was fading.

So Matt and I decided to go. Although we arrived early, half the seats were already taken. Popova was not the only attraction – she would be interviewed by Elizabeth Gilbert, author of numerous beloved books like the Signature of All Things and Big Magic (and, of course, the love-it-or-hate-it Eat, Pray, Love).

The event, in the end, was not an escape from my condition but instead gently suffused with grief and cancer. Elizabeth Gilbert has been mourning her partner, Rayya Elias, who died from pancreatic and liver cancer in 2018. Popova’s dear friend Emily Levine died from lung cancer on the day that ‘Figuring’ was published. The book itself describes the testimony Rachel Carson gave to Congress while her bones were crumbling from metastatic breast cancer.

At the end of the night, Amanda Palmer sung and strummed “Bigger on the Inside”, about her friends dying from cancer and a fan asking her “how do you keep fighting?”

Yet the event was also full of science, and vision, and love. Gilbert talked about mycorrhizal fungi, the barely visible fungus threads that connect the trees in enormous old forests (I first learned of mycorrhizae in the joyful and fascinating Mycophilia by Eugenia Bone). Mychorrizal fungi is essential to the life of a forest, a network that enables the trees to share nutrients and communicate with each other. Gilbert said that when the oldest tree in the forest dies, it sends its energy to the tree that is the youngest and most foreign. I couldn’t find another source for the information, but I loved all the ideas it contained: invisible interconnection, interdependence, wholeness.

Walking home with Matt through the cold February night afterwards, I felt strengthened. We talked about death, and what it means to be here alive for a limited time (Emily Levine introduced Maria Popova to poetry – what an enormous, rippling, joyful gift to the world).

The odds of me getting to be old are pretty low. Of course, there’s no any guarantee of that for any of us (as the Buddhist meditation goes: death is certain, the time of death is uncertain – what should I do?). And there’s plenty of old humans that don’t share their energy and wisdom, but let time close them up and disconnect them from mutual nourishment.

I’m a young tree – a sponge, still, for energy and knowledge and wisdom and poetry. I’m connected and vital and growing (as well as sick).

I don’t know where strength comes from. It’s not easy to tap into it at the moment, facing the psychological challenges of new tumors and more treatment. But I suspect most of it comes to me from other places: from the invisible network of interconnection and interdependence, from ideas, from fragments I can understand and from the enormous pulsating tapestry of everything I cannot grasp (from our earthly ecosystems to our unfathomably complex universe: even catching a glimpse of it out of the corner of my eye makes me weak with wonder).

“We are so much bigger on the inside

You, me, everybody

Some day when you’re lying where I am

You’ll finally get it, beauty

We are so much bigger

Than another one can ever see

But

Trying is the point of life

So don’t stop trying

Promise me.”

Amanda Palmer, Bigger on the Inside

Waiting for my coffee on my way to work last Monday, I realized I was going to vomit. I spent a few moments in denial before hurrying outside with my cheeks puffed out and three fingers sealing my lips shut. A New York City street trashcan seemed the least antisocial option, and I heaved into it several times – a pale, bubbly vomit of unknown cause.

I don’t vomit very often (even when I’m ill), so I felt instantly on high alert. I hopped in a cab and went home to Brooklyn, where I stayed lying down for a few days with headaches and nausea.

I told my oncologist and he scheduled me for an MRI. It seemed like overkill – surely this was just a virus or something? Matt told me that the girls at our local coffee shop were also suffering from headaches and nausea, and we both took some comfort in that.

But I didn’t improve much as the days went by, and so on Saturday we went over to the Memorial Sloan Kettering Urgent Care Center where they scheduled me for a brain scan that afternoon. The results arrived the next day – a lesion in my brain, just behind my right temple. It was – it is – overwhelming news.

A lot more tests followed. I had my first MRI, trying to breath calmly through the hammering and yelping of the machine. I was oddly grateful for the little scuff marks on the inside of the white tube, something on which to focus my eyes in the claustrophobic closeness.

The MRI found another nine tumors floating in my brain. I know now that brain metastases are more self-contained than brain tumors – they don’t tend to eat into brain tissue. I envision 9 blueberries and one grape floating in the jello mold of my mind.

They put me on steroids to control the swelling in my brain, and gave me anti-seizure drugs just in case. They picked stereotactic radiosurgery as the first line of treatment – radiation beams targeted directly at each of the tumors. This kind of therapy minimizes collateral damage to the brain. They made me a helmet and face mask to keep my head perfectly still during treatments, while white and silver panels floated noiselessly around my head (it made me feel like I was in a scene from Space Odyssey).

They expedited the radiation therapy and I finished my last treatment on Thursday. I’ll have another MRI in two months to see if the tumors have responded, and make sure there are no new ones.

It’s been an overwhelming couple of weeks. We had relaxed temporarily about 2019 – we knew that there were risks, of course, but we’d had a set of good scans and we were ready to go skiing and have fun and make life plans. Now, I am a patient again: waiting quietly in beige waiting rooms, lying still on scan tables, sleeping through most of the day. I take my drugs on schedule and have to be careful on my own in case I lose strength or have a seizure. I feel, again, like life has been paused.

We know, after last year, how most of this will work (sort of). We know we can handle a lot. But it is hard not to feel resentful at the moment. This isn’t what I wanted! I’ve been good! I’ve been patient! I’ve been doing everything you told me to do and more! I’ve been resilient and positive and good. Now I want my reward: To go out again into the world and be silly and feckless and ordinary and well!

My disease is fascinating and mysterious: brain metastases from bladder cancer are exceedingly rare. But treatment and diagnosis and monitoring are tedious. Turn up here. Wait there. Get filled with drugs. Hope for good results. I don’t want to be a patient again. I don’t want to be unwell. I want to care for myself and feel like myself.

The MRI and radiation therapy technicians tell me “excellent job!” when I’ve lain through my whole scan without squiriming. It seems like such a simple thing: to lie still. But as they feed me into the noisy white tube, I feel my legs and mind buzzing: run! Of course, there’s nowhere to run to. But it feels like maybe if I just made a break for it, then maybe I’d find freedom from all of this.

Matt and I finished 2018 sitting around a fireplace at Menla, sharing resolutions with 20 or so strangers. We had just finished our fourth day of a meditation retreat: backs arched over blankets for morning pranayama practice, short meditations (on our breath, on loving-kindness, on death), esoteric and mystical dharma talks about the life of the Buddha. It was Matt’s idea to spend New Year’s Eve meditating instead of partying (although we still snuck in a half bottle of champagne, drinking it out of white porcelain coffee mugs in our bedroom).

Not that a huge party with buckets of champagne would have been inappropriate. We had just survived an enormous year. My latest scan (December 21) showed that things were still stable, two months after the end of chemo.

I’m still getting over weird side effects from treatment (headaches and hot flashes being the most disruptive), but my blood tests show that I’m edging back toward “normal”. My anemia is almost gone. I have hair, and eyebrows, and eyelashes again. I don’t even need a nap every day (although I can easily sleep 9+ hours every night).

I’m ready to start transitioning back to full time work. Physically ready, at least. Mentally, I am less clearly “ready”. I feel skittish, restless, and a bit lost.

I’ve spent most of the past year dealing with an immediate, overwhelming problem: my health. I had little control over the process. Attend my appointments. Sit calmly while nurses stuck needles into my hands, my arms, my chest. Avoid raw foods. Go to bed early. Lie on the bed of the CT scanner with my arms over my head and breathe (while the pre-recorded male voice in the CT room intones at intervals: breathe in… hold your breath… breathe).

Now, I am poised to re-enter the world. I have choices again. My responsibilities are no longer life or death matters, but ordinary, every-day frustrations (getting out of bed when my alarm goes, organizing dinner, worrying about my taxes).

I am re-entering the world, but I am not the same person as before. If I live for 5 more years, I will have beaten remarkably bad odds. The next year will be punctuated by CT scans every 2 months. Making plans, having ambitions, being diligent about anything that doesn’t have immediate consequences: it feels hard to invest when I’m living my life in two month increments.

The day I found out my cancer had spread, I also had food poisoning. It was not a good day: a lot of sobbing, and then the sobbing would lead to vomiting. Matt cried too, and we spent a lot of that first weekend lying in bed with our limbs intertwined (it made me think of the classic illustrations for the story of the Babes in the Woods, the young children clinging to each other for comfort in a terrifying world).

It could have been one of the worst years of my life. But it wasn’t. It wasn’t because of the love of Matt, and of my family, and my friends, and that huge web of people who wrote me notes and came to visit me. It wasn’t the worst year of my life because of you. Because you sent me love, and strength, and “healing vibes”. You held me, and I felt safe, and connected, and loved. Because of you, I was less scared about leaving the people that I loved: I knew that you would love them, hold them, be with them.

It is a miracle that I am alive right now. My cheeks are round and rosy, and I am mainly healthy– despite the dire odds, despite six months of chemo.

Finishing the intense period of treatment has also left me with a weird sense of loss. It turns out, we humans are actually really good at coping with disasters. We respond to acute stress by coming together, cooperating, connecting. The stuff that makes us cranky? It’s the chronic, everyday stress of normal life.

I experienced serious illness. I had a biopsy site that wouldn’t heal: we changed the dressing twice a day as my body kept optimistically producing the fluids that would normally knit my skin back together again. I couldn’t lift my left arm for a month as the tumor in my shoulder ate through bone and pressed on muscle. I received so much chemotherapy that my hemoglobin crashed (I had Grade 4 anemia – Grade 5 is death). In 2017, Matt and I had been talking about starting a family. In 2018, I was buying books to help him cope with losing a spouse.

I wouldn’t choose to have cancer if I had been offered a menu of life options for 2018. And when my doctor called to tell me that my latest scan results were clear, I literally got on my knees with gratitude for more life, for freedom from chemotherapy. But life post treatment is also an unexpectedly difficult time. No more silent waiting rooms, or hours patiently waiting for chemo to finish. Instead, the noise of the city and the subway. Patiently wading through the 500 unread emails in my work inbox.

When I was going through treatment, it was a great achievement to finish my meals and get to my appointments on time. Now, I am faced again by the myriad tasks required in adult life (where is my trophy for being responsible?)

I am hugely grateful for the people who made this experience one of love and connection instead of fear and loneliness. I am hugely grateful to be well – even if just for a period. But it’s also weird and hard to be merging back into the stream of life.

The dance of renewal, the dance that made the world, was always danced here at the edge of things, on the brink, on the foggy coast.

Ursula K. Le Guin, “World-Making” in Dancing at the Edge of the World

When people asked how I was doing after chemo had finished, I’d reply: “A little better every day.” It was a carefully crafted response – one that avoided details while still expressing cautious optimism that I might be finally, gradually healing. Unfortunately, as the weeks progressed, it became increasingly inaccurate.

I was full of expectations about the end of treatment. I had been patient, and careful, and focused on self-care. Now I was restless, ready to return to normality. But it turned out that recovery required just as much patience as treatment had needed. Instead of feeling better every day, my anemia deteriorated and I started spending more and more time in bed. A month after chemo finished, I needed another blood transfusion – this time, twice the amount I had received during treatment. On at least one metric, I was in fact doing worse than I had been during chemo.

It was not the only way in which things had gotten harder. Throughout the chemo period, I had felt a certain peacefulness. All my strength had been directed toward getting well again. Now, things were suddenly undefined, uncertain. I became more and more tightly wound at the prospect of returning to the undirected chaos of adult life.

Chemo was physically and emotionally demanding. But it was also clearly defined. We knew my treatment schedule weeks in advance. My health was measured regularly, and I came to understand what each of the numbers on my blood tests meant. The hospital provided me with lengthy handouts dictating permissible foods, recommended nutrition, and guidance on staying healthy. I knew my job – stay well – and I had a team of professionals to back me up.

Out of treatment, little is defined. No one can tell me how soon I can return to work, or when my hair will come back, or when my kidneys will be healthy again. The only thing I know with any certainty is that I will be having CT scans done every two months. But no one can tell me what those will say. No one can tell me if I will be in the privileged 15% of patients whose cancer doesn’t come back.

I wonder if humans once lived more comfortably with uncertainty. Earlier this year, I read “Against the Grain: A Deep History of the Earliest States”, by James C. Scott. Professor Scott surveys the archeological remnants of the earliest human settlements, and reveals that human society did not – as many assume – evolve in a linear way. Rather than progressing methodically from a nomadic lifestyle to settled agriculture and, ultimately, civilization, our ancestors instead crossed back and forth between these ways of life. At times, we even inhabited the space in between: settling in a single spot and building a township together, while still relying on hunting and gathering to nourish ourselves. We established these in-between places in locations which gave abundant access to adjacent ecosystems. Communities could there make the most of the edge effect, the greater diversity that exists at borders. We could fish in the water and gather from the banks and hunt on the land. The pulses of each ecosystem could alternate between plenty and scarcity, yet we thrived continuously by adapting with change and feasting on what flowed.

Professor Scott describes these edge communities as living with the tempo of the environment, and contrasts their lives with the monotonous rhythms of farming. Raising a uniform grain or cereal crop domesticated plant life, while also domesticating us to the timing of our fields. We came to accept and expect a self-imposed metronome that dictated the minutiae of our days and the shape of our years.

Our shift to farming must have fundamentally shifted how we thought about, and related to, the future. Hunter-gatherers knew a remarkable amount about the rhythms of their environment: the patterns of flooding and fruiting and migration and spawning. But, as our ancestors came to control the cycle of planting and harvesting, we would have increasingly expected to reap what we had sown. The farmer came to see her future in terms of the almanac: something to be shaped by her daily, weekly, seasonal actions. If the seeds were sown; the field tended; the crop watered – then the work of this season would produce the results of the next.

In this post-industrial age, I think we are still raised in the mindset of the farmer. In theory we understand that the future is unpredictable, but most of the time we live as if we can know and may even control what tomorrow will bring.

My cancer diagnosis made it impossible to maintain the illusion that my good behavior today will give me want I want tomorrow. My linear life, with its plans, and expected consequences, no longer exists.

Instead, I have to learn to make my home on the edge of a river bed – between illness and health, between living and dying. I do not know what the rhythms and flows will bring in the coming years, or even days. Instead, I must try to live with the tempo of my environment. I cannot know what each new day will bring – but today I have the strong hugs of my husband, a warm cup of tea, and a blue sky striated with white clouds. Some mornings I am too tired to even read; but in this moment I have the energy to write.

We strive to domesticate the unknowable future. Yet crops fail. Dams burst. We fall ill. We die. Change and flow comes and disrupts and remakes us. The only choice I have is my relationship to this tempo: can I nourish myself on whatever may come?

I would love to live

Like a river flows,

Carried by the surprise

Of its own unfolding.

“Fluent” by John O’Donohue in Conamara Blues: Poems

The solar system, which was considered to be a well-oiled cosmic machine running on rigid, deterministic laws, is also chaotic. Chaos lurks in the regular, and the unpredictable is never far from the predictable. This chance and indetermination affect not only the planets, stars, and galaxies, but also our everyday life. – Matthiew Ricard & Trinh Xuan Thuan, The Quantum and the Lotus

The pump of the machine has its own rhythm. It sounds somewhat like a stuck zipper: zzh-zzh-pause, zzh-zzh-pause. Between each pause, three clear drops fall from the bag of saline into a fine transparent tube. The tube, shuddering slightly with each pump, is connected to the port installed in my chest. The fluids flow through the port into another tube that sits invisible under my skin, and from there into a vein that goes straight to my heart. My heart does its vital part: pumping the saline through the rest of my body, through the network of blood vessels, and ultimately to my kidneys where it helps flush out the toxins that have accumulated there.

Since I was first diagnosed with cancer, I have acquired a whole new medical vocabulary – urothelial, immunotherapy, lamina propria. I have learnt the names of my chemotherapy drugs – cisplatin, gemcitabine, paclitaxel – and the drugs that keep me well – dexamethasone, olanzapine, lorazepam. I have learnt many new words that mean something like “scar” – residua, sclerosis, sequela.

Medicine and science can seem cold and technical. They are disciplines to learn because they are useful, not because they are beautiful. And, indeed, I set about learning a new vocabulary because it had utility: I could read the radiologist’s report and understand what they were seeing in the pictures of my organs. I could discuss treatment options with my oncologist, and talk to the nurses about side effects. But these new words – beyond their meaning – also had a poetry of their own, a lyrical cadence. “Residua” flows through the mouth when spoken, a beautiful word compared to the short and harsh-sounding “scar”.

Cancer caused me to give an unprecedented level of attention to my body. I came to understand and even forecast its unique reactions to the cycles of drugs – the rosacea that bloomed on my cheeks every three weeks, the stomach cramps on the fourth night after treatment, the sudden weight drop on the fifth day once the steroids had worn off. While these side effects weren’t beautiful, attention to them allowed me to appreciate the ineffable capacity of my body to process and heal from the poisons and drugs we pumped into it.

But the most intimate form of attention was the regular testing: blood tests and CT scans that revealed what was happening underneath my skin. The fluctuations in my red blood cells, which in turn reflected the health of the marrow deep in my bones. The section of my lungs that appeared on CT scans like ground-up glass. The knitting of my bones in sclerosis as they healed. The fading shadows on my liver – sequela.

I didn’t need CT scans for all my scars: I have four external ones. Two are from the port that they installed in my chest to make the chemo infusions easier. The other two are from my tumors: a pair of purple circles, one just under my right ribs, the second on my left shoulder blade. They were raised and hard and red when they were growing; now they are flat and soft, their color resembling nothing more sinister than a fading bruise. Their vivid color once came from the density of blood vessels. Tumors, I have learnt, are so hungry for blood that they send out signals causing nearby vessels to reproduce rapidly (I have learnt the word for this too: angiogenesis). The unstable, bloody spider web they create is dense and prone to breaking. This is what gives the growing tumors their bright red appearance. That color is fading now, slowly, as the vessels and surrounding cells gradually return to their normal state.

I have found wonder in paying attention to the medicine, the science, of my cancer and its treatment. The evolution of tumors, so perfectly adapted for uncontrolled growth. The intricate balancing act of treatment, trying to kill that part of me that is growing too fast while preserving the health of the whole. The awesome power of my body, from the pump of my heart to the healing of my scars.

I met with my oncologist last week, and he gave me welcome news: that I’ve had my last chemo treatment. Six months’ worth. Fourteen infusions of the magic poisons. As predicted, my body has been struggling to right the balance again – the blood tests show that my kidneys are struggling. And so the saline drips into my port, aiding nature’s filtration process (water and salt: purifying, healing, hydrating).

No more chemo, because my doctor is finally confident that the shadows and spots on the latest scan are just scars (residua, sclerosis, sequela). He is quick to tell me that, of course, the really important scans are the next ones: the one in two months, the one after that, and after that… If my scans are clear for two years, he says, then I will be in remission. The power of medicine and science doesn’t extend to knowing the future: the closest they come is probabilities. Even the fine-grained detail on a CT scan isn’t enough information for us to predict the way the trillions of cells in my body will behave over the months, the days, the seconds ahead.

Right now, though, I am well. My wellness is a miracle borne of medicine, science, my body. My future remains uncertain, and hope still feels hard. But when I pay attention to this moment, I feel wonder at where I am and all that has led me here.