Rahil, my brother, my teacher (Love)

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

 

Outside first

Betrayal by the body (No stories to tell)

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.

Identity (Fragments)

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

Where does strength come from? (Bigger on the inside)

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

Blueberries in my brain

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.

New Year (“new normal?”)

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.

Between illness and health (Between living and dying)

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

Scars and scans (Science and hope)

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.

Losing my hair again (For myself, not by myself)

Before starting the extra rounds of chemo, my oncologist gave me a six-week break from treatment. During this time, unexpectedly, my hair started growing back. The baby hairs on my head were short and impossibly soft, a silky suede I couldn’t help but invite my friends to feel. My eyelashes came back too, tiny and dense – a dark furry eyeliner. I greeted this new growth with delight, particularly the return of my eyebrows and eyelashes. I didn’t recognize my face without them, and I disliked how their absence made me seem more obviously sick. Even after six months of chemotherapy, I still strive to be, to look, as healthy as possible.

But today, when I run my hand over my head, it is quickly covered with short dark hairs that are already falling out again. After three extra chemo treatments, I wake up in the morning to a pillow covered in tiny strands. My new eyelashes are falling out into my eyes. I feel a sadness for these eager new hairs that managed just a few millimeters of growth before already – again – dying.

Before my hair fell out the first time, I thought I was psychologically ready for it. I had cut my long locks short, and adjusted to seeing my new look in the mirror. I’d bought a soft brush that wouldn’t pull on the delicate strands, and I had reduced how many times a week I washed my hair. But one morning in the shower, it all started coming out at once. Handful after handful. Standing under the streaming water, I felt like it might never stop and I started to cry hot tears of panic.

I called out for Matt.

There have been many times throughout my illness when I’ve wanted to do things on my own. Asserting my independence gives me back some power, helps me feel like I still have something valuable to contribute to my family, to the world. There is a raw vulnerability that comes with depending on others, and it can feel almost shameful.

But Matt manages to see through my bravado. He has insisted on being there even when I’ve told him I can do it on my own. He somehow, miraculously, has done this right from the start. Before I was diagnosed, when my doctor had told me there was a “99.99% chance that everything will be fine”, he still stubbornly came to the next appointment and so was with me when I first found out I had cancer.

He watches, now, as I get increasingly sleepy on the couch in the evenings and he cajoles me into bed before I get too tired to walk. He waits patiently with me for doctors’ appointments. He comes along to each of my long chemo sessions, ready to make me cups of tea and ensure I always have a warm blanket.

And that day, when I found myself standing in the shower holding clumps of hair in my hands, he got undressed and came into the shower with me. With a plastic bag, he stood next to me under the running water while I disposed of clump after clump of dark wet hair. And then he walked with me to his hairdresser, and stood by the chair as the barber shaved off the sparseness into a tidy buzz-cut.

A friend told me recently that when we want to help people, it is important to just be “with” them instead of striving to somehow fight for them or fix things.

I am deeply grateful that Matt has the ability to know when I need him to be with me – not to try and fix the unfixable, or fight the unwinnable. As I lose my hair a second time, he tells me I look beautiful and that it doesn’t matter. He rubs the top of my head to feel the soft dark hairs remaining. He gently accompanies me, and by being by my side allows me the power of doing things “for” myself while never letting me feel like I must do anything “by” myself.

Back (Black Backpack)

I think it was the day we were flying out that I bought the black backpack for our New Zealand trip. I had just realized how ill equipped I was for our outdoor plans, and rushed to Soho to buy a windcheater and the backpack for our days of hiking and kayaking. It’s made an excellent travel bag: just the right number of pockets, just the right size to shove under an airplane seat.

When I started chemo in April, it became my hospital bag. Over the last few months, it has been filled with playing cards, three types of green tea, an embroidery kit, a bright pair of socks (replenished with a clean pair each week), and whatever book I might currently be reading.

I unpacked it a few weeks ago after my last set of results. I wasn’t confident enough to totally disperse the contents – I repacked those in an old tote bag, and hung it in the junk closet. But it seemed possible in that moment that it might become my hiking and travel bag again, ready to be filled with airline-approved toiletries, sunscreen, bug spray, squashed peanut butter sandwiches.

I was ready for a break from being sick. Ready for plans other than hospital appointments. My husband and I started talking about where we might go – Portugal, Sicily, Azerbaijan. We took a weekend trip down to DC to see the Obama portraits and space shuttles; hear about octopuses and jellyfish at the Library of Congress Book Festival; eat Afghan dumplings, Ethiopian raw meat, and pastries made with heritage grains.

However, it turned out that my black backpack would only have a short break from its role as hospital bag. After giving ourselves a week or so to process the good results, we had another conversation with the oncologist. There was, indeed, a chance that the latest scan was only showing scarring. But the greater chance was that I still had cancer in my system. There wasn’t an obvious treatment plan, but the most sensible decision would be to continue with an extra two cycles – five more weeks – of chemotherapy. We would push my body beyond the maximum treatment regime to try and get my scans clear, to attempt to get rid of as much of the cancer as possible.

We had expected that the additional treatment would be a hard path, physically. So far, it has been. My blood tests are getting more unpredictable. I’ve been in hospital three times this week alone, and had numerous visits for blood transfusions, injections, hydration.

But I was unprepared for how hard this path would be psychologically. I agree with my doctor that more chemo is the right decision. But I do not want to be sick anymore. I do not want to be tired and nauseous each week. I want to have energy. I want my life plans to be more than a schedule of hospital visits.

I think of the myth of Sisyphus. I think of Groundhog Day. I think of the word stamina. I imagine coming back from a long day of hiking, only to realize that the subway is not running and I have no money in my pockets. Already exhausted legs carry me through the streets of New York, and I’m too tired to ignore the puddles of brown water in the gutters, the gray of the sidewalks, the brain-filling howl of sirens. The right metaphor is not walking uphill, which we can do under the sky and among the trees. Just an exhausted trudge along a hard path when we had been nurturing hope of rest.

It helps to remember that I don’t live in metaphors. I live in the real world. And this morning I walked under the sky and among the trees. The air was crisp, and the clouds high. There were ducks at the tiny yellow sand beach, and red mushrooms had pushed up through the wood chips. They reminded me of puhpowee, a word I had only just learned that means “the force which causes mushrooms to push up from the earth overnight.”  I don’t live in metaphors. Out of the black, emergence is still possible.