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.

Other people’s gardens (Do what you love)

On the days after chemo, I try to walk down to the East River early in the morning. Although there are a half dozen ways of getting there, I usually take the same route – because I have it honed to maximize my exposure to other people’s gardens.

“Gardens” is a term to use loosely in New York, even in a place as tree-lined as Cobble Hill. I include window boxes, and pots on front stoops, and the tree with the pink fluff-ball flowers growing at the entrance of a parking lot. There’s one house with a garden that’s mostly concrete and wood-chips, but it has a pair of spindly rose bushes that produce one or two spectacular blooms every few weeks. I even have some favorite failures: the empty basket suspended from a lamp post, the claw foot bath tub filled with weeds.

A favorite failure

I know that exercise is good for me. It may diminish the side effects of chemotherapy, and it will probably help keep me strong and well. But often my main reason for walking is just to bathe in the life among the streets and homes (my urban shinrin-yoku).

I sometimes worry about being too introverted, solipsistic even. I wish I was better at remembering the names of all the nurses who administer my treatment. I wish I was better at asking people about that big thing in their lives. I wish I knew the right time and way to send a message that says “I’m thinking of you and I care about you.”

Particularly because, since my diagnosis, I have been the recipient of countless such messages. I have received beautiful gifts and thoughtfully chosen books from the most unexpected (and even anonymous) people. Even the quiet friends, the old colleagues, the sometimes friends, have stepped up to let me know I am loved.

I have come to see these threads of connection, so light and freely given, as a web. Like the fairies in my childhood picture books, I am held aloft by these soft strands. Together, they weave such a strong net of connection that in the midst of an often isolating journey, I don’t feel alone.

This web is not a reward given for some good act. It is not repayment, it is not deserved in any measurable way. It doesn’t matter that I am introverted, and sometimes solipsistic. It doesn’t matter that I haven’t always done the right thing.

It is one of the reasons I love the gardens so much. Gardening is an introverted activity. Though I can’t see into the minds of my neighborhood’s gardeners, I suspect few – if any – were acting in the public interest. They didn’t plan for (or plant for) the stranger who would eagerly track the progress of their garden’s blooms. I love these gardeners for their failures and their successes, and for the joy that they have accidentally brought me simply by doing the thing that they love.

Losing my hair (The kindness of strangers)

I didn’t know how to prepare for chemo. I wanted a list of things to do to make me “ready”, but my only clear tasks were to turn up and allow my blood to be drawn one day and my body pumped with poisons the next.

But I did know my hair would probably fall out. It occurred to me that one thing I could do to prepare myself would be to cut it short, preemptively. I didn’t want to shave it off, but a shorter style seemed like a useful emotional step toward losing it all. At least I wouldn’t go abruptly from locks past my shoulders to a buzz-cut.

However, my most recent attempt at short hair had been as a 19-year-old studying abroad in England. Just a bit shorter than a jaw-length bob, it had the tendency to puff into a dome about my face and roundly emphasize the extra weight I’d put on devouring 3-for-a-pound Cadbury’s from the student shop. An attempt to fix it during a visit to Rome merely converted the brown bouffant into a cherry red one, with the hip but deeply unflattering addition of an asymmetrical fringe.

I had no desire for another cherry red disaster, but I didn’t have a regular hairdresser in New York. Although I’d been to a handful of salons of varying degrees of competence and cost, none so far had convinced me to return. I would, it seemed, be entrusting this monumental cut to someone entirely untested. Eventually, I settled on a stylist called Penelope from the salon that had done my hair the day I got married at City Hall. Her bio said she had a particular passion for women’s short styles.

Just married

I decided in advance to tell her the reason for the dramatic change, as I didn’t want her to try and talk me out it. She didn’t make a fuss. Instead, she explained how she’d have to get know my hair, its quirks and whorls. We didn’t talk about cancer, but discussed the vintage scarf she wore around her hair, her new white leather boots, her relationship with her mother.

The cut she gave me wasn’t exactly like the pictures I’d brought with me. I didn’t quite pull off a pixie-ish Carrie Mulligan. But it clearly suited my thick mop of hair. I didn’t look like me, exactly, but I liked it anyway. As I admired the new style in the mirror, I teared up with gratitude, and hope. The cut was symbolic: a sign of a future that didn’t quite look like the old one but in which I might find new ways to be true to myself.

They wouldn’t let me pay for the haircut in the end, and even gifted me a tub of hair product for my new do.

I was overwhelmed with gifts that day, from people who did not know me but who nonetheless wanted me to be happy and well. It would not be the last time I received unexpected kindness from strangers. It is one of the gifts of this unsought-for fate, to see the love in the hearts of people for another human. The transcendent urge to relieve me of my suffering not because of who I am, but simply because I am another human being.

Good results (You don’t have to be good)

“You don’t have to be good,” Mary Oliver absolves us at the beginning of her beloved poem, Wild Geese.

You don’t have to be good.

I have been craving that absolution since my diagnosis. Cancer is (like pregnancy) a condition that awakens an irresistible urge in others to give well-meaning, unasked-for advice. To be a good cancer patient is to exercise and eat vegetables and, of course, stay positive.

In 2009, a professor at the University of Waterloo gave positive affirmations to people who felt bad about themselves (I’m a lovable person!). The impact, however, was not particularly positive. Instead, these study subjects felt worse about themselves after repeating the statements or considering how they might be true.

That the admonitions to “Be positive!” and “Stay strong!” are well-meaning does not absolve them of their harmfulness. They’re not only useless (as all emotional directives are – “don’t cry” and “don’t be mad” being my favorite examples). These directions also have the tendency to foster a nagging sense of guilt. Am I going to make myself sick if I don’t keep a positive attitude? Am I doing cancer “wrong”? Am I killing myself by feeling, today, as if this whole cancer shebang is more than I want to bear?

You don’t have to be good.

The emotional impacts of cancer have not been linear or predictable. I have felt sublime joy in just being alive, cried with happiness seeing the delicate pattern of spots appear on the pavement as it rained. I have fewer down days than I did before my diagnosis: I am no longer as prey to that miasma of angst that comes from no discernible source. I know what is wrong. I know what my fight is.

But there are also times when I am expecting happiness but find some other, darker emotion in its place.

At 6pm last Monday night, my oncologist called with my latest scan results. “I’ve looked at them myself,” he began in a voice that betrayed nothing, “but I was waiting for the radiologist’s report. They are, in a nutshell, good.”

I learnt a new word: sequela. The aftereffect of a disease. The shadows in my liver were “sequela” – not tumors anymore. The spots under my skin were “residua”. There was even a chance that the spots in my lungs were just scarring.

The results were so good that my doctor put on the table an option we’d never considered before: stopping chemo for two months and waiting to see what happened at the next scan. From the two hard paths, a third had emerged. It seemed almost miraculously easy compared to the others: a period of respite with no treatment failure to worry about and no chemo to endure.

It was wonderful news to give to my parents and family. I felt lighter, physically. I had shuffled back a few steps from the morbid edge of my own mortality. I could let my eyes lift from dirt and ashes and squint toward the horizon.

But I can no longer see the future like I could before this disease. The good news let me think about re-entering the world, gave me freedom to consider what I wanted to do with my days. Yet, beyond the next two months, the horizon remained obscured.

Only 15% of Stage IV patients have a long term response to chemo. The most likely outcome is that the tumors start growing again in the next few months to a year. To look toward the horizon doesn’t give me a sense of spaciousness, of time, anymore.

When I tell people about the results, they want to know how I feel. They want me to feel happy, for this news to feel (to be) unambiguously good. Some even want to give me credit for these results, for staying strong and positive and for doing all the “right” things during treatment. It is credit that I do not feel is deserved, that can only be given because they didn’t witness the days when the burdens of the present and the bleakness of the future were altogether too much.

You don’t have to be good.

You don’t have to feel good.

(And we should probably stop telling people to stay positive).

Blood transfusion (Interdependence)

The transformation of the word “adult” into a verb (with the attendant “adulting is hard” memes and mugs and Buzzfeed lists) has been mocked and criticized. But I can understand the desire for a verb. It can feel like the true measure of whether we are an “adult” is not our age, but what we are able to do for ourselves. Beneath higher aspirations of love and meaning and career success, we are required to do the basic work to be independent and self-reliant. To keep our homes clean, our fridges stocked, our bills paid. We invest for retirement and pay for health insurance, securing our independence even in sickness and old age. It may not be a scandal to ask for help, but it can feel like an admission that we have failed, somehow, to adequately “adult”.

However, the drudgery of responsibility has its psychological pay-off: the sense of ourselves as creatures with the power to shape our environment, our self, our future. Maintaining our independence makes us feel like we are in control of our own little kingdoms.

The desire to feel independent, in control, is not obliterated by a cancer diagnosis. I have clung to every opportunity to do something for myself, striving for the sense that I am still an adult with agency over what is happening. I have stubbornly caught the subway to and from the hospital on all but the very hardest of days. In between the hours that I couldn’t get off the couch, I’ve gathered the energy to do the grocery shopping, and the laundry, and plan meals that met the complex nutritional requirements and restrictions for chemotherapy. If the responsibility for treating my cancer lay in the hands of my oncologist, then I would take on the responsibility of keeping my body healthy and strong enough to take everything medicine could throw at it.

For many months, I did manage to stay healthy and strong. But, eventually, my red blood cell count – never very high to start with – started to slip. The numbers crept downward and my body responded. My legs became heavy walking up any stairs. My heart raced as I walked down the block. Our apartment got messier as I ended my days too tired to hang up my clothes or put a plate in the dishwasher.

At my eleventh treatment, my doctor gave me a choice: they could give me a blood transfusion immediately, or they could give me one in a few days when the fatigue became unbearable.

I wanted to say “No”. Deeply, instinctively, I didn’t want a blood transfusion. But the transfusion itself wasn’t optional: my choice was either to get one now, or tough it out for a few more days until my limbs turned to lead. I asked my husband what he thought I should do, knowing what he would answer. “It seems like you should have one now,” he responded. It was, I knew, the only sensible choice.

So I quieted the “no”, and agreed to have one immediately.

But where had that desire to say “no” come from? Some part of its roots were intertwined with my clinging sense of independence. I knew, intellectually, that I was relying on other people for my health. My fantastic oncologist, the diligent nurses, the researchers, the pharmacists, were all essential to keeping me well. But they seemed part of the well-oiled ordinary machine of modern life. They were doing their independent assigned parts, as I was striving to do mine.

The blood I would receive didn’t come from the well-oiled machine. It came from another human being. It came from some other person’s choice to do something beyond their assigned part, to give more than they were required to give.

I would not only be receiving the physical blood of another, with all the real and metaphorical life and energy it conveyed. I was also receiving something more profound: a gift freely given by a stranger, without thought of whether the recipient deserved it. A gift I was worthy of receiving for the simple fact of my human need.

Absorbing my connection with that act of a stranger made it difficult to maintain the illusion of independence. My body needed something that only their human body could provide, and only their human kindness could supply.

When I relaxed the grip I was holding on my independence, I surrendered to the fact that the blood transfusion was the sweetest part of my treatment, a joy-filled jolt of connection to the very best part of human nature.

We fear that losing our independence will reveal our dependence. But I think when we let go of the illusion of independence, what we will find instead is our interdependence. Cancer simply revealed my connection to the world; my little kingdom had always been infiltrated by others.

In the waiting room (Patients with paintings)

He took a seat in the waiting room with a big black bag. I always carry too much with me to appointments – books, scarves, a little embroidery kit from a friend. But he took paintings out of his bag, canvas stretched over wood frames. He started wiping each one down with a rag and then exclaimed – one of his canvases hadn’t dried properly, and he had smudged bright orange paint across the artwork.

In the quiet stillness of the waiting room, I watched him attempt to fix the problem. He started with more wiping and – therefore – more smudging. Then he walked across to the kitchenette and tore the plastic wrap from the tower of disposable cups. He struggled to rip open and un-crumple the sleeve so that it would cover the mess on the rectangular canvas.

The waiting rooms at the cancer center are usually full of people pretending they don’t see each other. We politely leave as much distance as we can, allowing each other the illusion that we each have our own personal sphere in this public place.

But bringing a bag full of paintings into the waiting room seemed to suggest the usual etiquette could be waived. In my bags of everything, I had a plastic wrapped copy of a New York magazine – and it seemed the envelope would at least provide better coverage than the crumpled-up cup wrapper he was wrangling. I walked over to offer it, together with the small set of scissors from the embroidery kit. He smiled, and said “You look more organized than me, do you want to do it?”

I sliced open the plastic pocket and slipped it over the canvas, my fingers catching blobs of orange paint. I ripped the center pages out of an old Economist magazine for the edges furthest from the smear, and the whole canvas ended up neatly and completely covered.

“When I was in high school,” I told him, “I remember getting in trouble from my art teacher for leaving the paint too thick. I feel like I got in more trouble in art classes than in any of my other classes. Even though it feels like the kind of class where you shouldn’t really get in trouble at all.”

And so we started talking about education, and then work, and then other things.

“One of my collectors is a lawyer for people facing the electric chair,” he told me.

“Australia doesn’t have the death penalty.”

“Neither does New York. Did you hear that the Pope recently condemned it?”

Our conversation morphed into a discussion about breaking from tradition, and how the Pope was doing it, and whether Trump was also doing it, and whether it was different if the breaking of tradition was guided by other, deeper principles.

He told me the paintings were offerings for the nurses. Eventually, we talked about cancer. Samuel, in his 70s, was in remission from multiple myeloma. He had also had a bladder cancer scare, and knew it was a rarity in someone my age and gender.

“But I thought bladder cancer was very curable?” he asked.

“Well, it isn’t once its metastasized. It’s in my lungs, my liver, my spine…”

“But you look so well!”

I enjoy hearing those words. I felt I had encouraged them that day, in my red rain boots, my yellow leather skirt, the fire-toned silk scarf turbaned on my head.

He looked at me with a new interest. “Has your attitude always been so…” I can’t recall the exact adjective he used. Something like good, calm, steady. He went on to try and clarify: “You don’t display any… hysteria about it.”

But our discussion about attitudes was cut short by the nurse calling him in for treatment.

I’m usually in waiting rooms with people much older than me. I usually feel distant from them – not just because we carefully ignore each other, but because it’s hard to see myself in them. My peers are the children and grandchildren who accompany them to appointments. My peers are the doctors and the nursing staff, doing their daily work – like I would be doing except for this illness.

But that day, I was given a glimpse of what it feels like to bring your personality – your paintings – into this space. Of allowing your edges to messily merge into the other people waiting. That these rooms are full of humans, not patients. That sometimes it feels good to have your hands covered in orange paint while you wait for a blood transfusion.

Two hard paths (Hope is the thing with talons)

Emily Dickinson wroteHope is the thing with feathers – That perches in the soul”. I think, perhaps, she pictured hope as a tiny, fluttering creature – a sparrow or a bluebird. I feel she was right about the feathers: hope connects us to the ungraspable future. It must be able to fly.

However, if hope is the thing with feathers, then it is also the thing with talons. I have come to know that hope, like Helen Macdonald’s goshawk, is a bird of prey. It soars, and dives, and its powerful legs grip with ferocious strength. Hope can hurt, because it carries with it all the love and the life I want for my future.

Next week, I’m having another scan. The previous scan was a good one: tumors shrinking, no new bone metastases. But one good scan doesn’t lead inevitably to another. My doctor made it clear that the chemo can, at any time, stop working.

If the tumors are still shrinking, then they will try and get me through an extra six weeks of chemotherapy. It is not an easy path. Those six extra weeks will take me beyond the usual dosage. They don’t typically give chemo for that long, because that is when the toxic effects really start to spike. My body, which has already dealt with four months of regular poisoning, will be under enormous stress. My organs, my immune system, my red blood cells, are more likely to falter. The doctors will be relying on all their medical tricks to get me through it.

Yet that is not the hardest path. Because if the tumors have not shrunk further, we will abandon chemotherapy and start looking for another treatment plan. It is not a disaster to be looking at a Plan B. But there are not endless options. Each plan that fails brings us closer to a day on which we have no plans left.

I had managed to be sanguine before earlier tests. All the build-up of bad news had made the possibility of good news seem distant. The only workable approach was a Zen-like one. If it was bad, then we’d deal with it. We’d work with our doctor to find the next course. And if that course didn’t work, we would deal with that too.

That one good scan gave us our first taste of hope. And, seized by that hope, I am no longer sanguine. This time, I crave good news. I do not feel prepared for bad news. I want the tumors to be gone. I want, at least temporarily, to be free from cancer. I have felt the rush of hope that good news brings, and I want to keep feeling it.

Hope brings me close to all the things I want for my future. It brings me close to growing old with my husband, close to having a family, close to having years ahead to listen to thunderstorms, holiday, walk alongside sparkling water. Hope perches in my heart with a powerful grip, because it attaches me to all the things I love most in the world.

Hope is the thing with talons –

It soars in the azure –

Before it seizes – round the heart –

Yearning for its future