I wrote the below essay a year ago. The file is dated March 21, 2011. I entered it into a non-fiction contest, but it didn’t win. So much has changed in the past year, and I don’t think I could write a couple thousand words about where I’m at right now.
But the below was a serious effort to get to grips with what we were going through a year ago.
Things are, it needn’t be said, much more serious now. But that’s another topic.
MY WIFE’S HAIR
My wife’s hair casts a thin shadow, one strong enough for her to discern in a mirror. Her hair is mostly grey and in some lights can seem to disappear. Three months ago she had no hair, just tiny stalks, stubs of follicles. “I had a head like a Brillo pad,” is how she describes it. There is a nation of people who will intuit what happened to my wife’s hair. It is a nation of unwilling citizens, a nation no one seeks to enter, a place where everyone is a refugee seeking asylum. A year ago if I had seen a bald woman on the subway, a woman with a scarf-wrapped head or sporting a well-positioned cashmere cap, I cannot say I would have given her a second thought. Such then was the extent of my experience with cancer. I had none. I didn’t want any. Wasn’t cancer just another word for death?
My wife hates being bald. She has a lovely shaped head. Everyone says so, and I am a daily witness. In the before time she cut her hair below her shoulders. She dyed it blonde. It was strong, healthy, as was she. It blew in waves across her face when we went for walks and across her pillow as she slept. This is the hair the children want her to have again. Myself, I don’t care what she does with her hair or what her hair does with her. I want her to live, survive, thrive. I want these things, too, for myself and the children, one boy, ten, one girl, seven. I am their step-father. We first met four years ago, and what a ride it has been. My wife has a lovely shaped head, and she hates being bald. The kids wanted her to get a wig, so she did, but she hates that, too. It itches. It feels fake. The kids can’t look at her in the wig without laughing.
Her hair is growing back. It now casts enough of a shadow for her to discern in a mirror. It will grow back curly, we’ve been told, a cause of some excitement. My wife has never had curly hair. What is it like? Also, starlets have been reintroducing the pixie cut in recent months. Viva Mia Farrow circa 1969! My wife chuckles that she anticipated this fashion curve. Four months ago she took shears to her own head. She had the children after school, then their father picked them up and took them for the night. In the half-hour she had alone before I returned from work she stood in front of the bathroom mirror and removed her hair. Earlier that day she’d emailed me and asked me if I would shave it off, and I’d said I would, but when I came home the job was done, and her eyes were shining. Fear. Terror. Pride. Anger. Horror. At this point she’d suffered – there is no other verb – her first of six chemotherapy treatments. Poisonings. We both knew what would happen next. We both knew we were at the beginning of an eighteen-week process that would test us like nothing we had ever experienced. Her hair would fall out. This was the first – and among the least – of what we (she) were about to endure.
Hair. Why do we care so much? Hair is sex, I read in a newspaper article about halfway through Kate’s chemotherapy. The association is not far fetched. When your wife is bald, you (and she) notice the stunning frequency – and the lush sensuality – of the hair product commercials in heavy rotation during certain prime time time slots (i.e., all of them, all the time). The message is clear. One cannot be attractive, desirable, complete without hair. The focus of the newspaper article was baldness. A mentally unstable young man had shot a U.S. congresswoman and killed a handful of bystanders. In his mug shot he grinned maniacally, the bald dome of his head gleaming. Baldness as symbol of insanity. The other example the newspaper analyzed was a twenty-two-year-old woman, a contestant in the most recent Miss America contest, who spent half her life without hair due to an autoimmune disease. Sometimes she wore a wig, sometimes she didn’t. Commentators praised her “bravery.” Baldness as abnormal, as deficit requiring fighting spirit to overcome.
When we first told the kids that Kate had cancer in September 2010, we were in a deep state of shock. The week before Labour Day, Kate found a lump. The next day she went to her doctor, but the doctor wasn’t available, so she went to the emergency ward of a nearby downtown hospital where the doctor said it didn’t look good and advised her to go back to her doctor’s office and don’t take no for an answer. Get an immediate, urgent referral to the breast cancer clinic for an ultrasound and biopsy. Get them to do both at the same time. They won’t want to, but don’t take no for an answer. There was still a chance at this point that it wasn’t cancer. It might have been a cyst. I’ve since read that most lumps aren’t cancer, which doesn’t please me as much as it should, though I’m glad for those who receive different results than we did. Kate got a referral to the breast cancer clinic, but it was for the Tuesday following Labour Day, the first day of school, the day our (then) six-year-old girl-child entered grade one.
It was one of those days when time seemed to slow down. This is one of the defining features of trauma, the fear centre in the brain goes on high alert. The body flushes with adrenaline. All sorts of small details stick in your memory. Your mind doesn’t know what is significant and what isn’t and you become hyper-alert. It is the unexpected thing that will hurt you and you are beware of it without knowing what it is. You want to catch it, stop it, crush it before it can get to you or the ones you love. We dropped the kids off at school, packed with lunches and cheer. Then we walked south fifteen minutes to Queen Street East. We live in the north end of the neighbourhood in Toronto known as the Beaches (or the Beach, depending on who you talk to. I prefer the plural, since there are, or have been historically, multiple beaches). Which means we live walking distance to Lake Ontario, though we hardly ever make the effort. This day, however, we did. We went first to a greasy spoon for breakfast, where the charming waitress asked: “How are you today?” Never had that question been so fraught.
Kate’s appointment was for 2:00 p.m. at the clinic. It was a brilliant, sunny, warm, late-summer day. After breakfast we walked to the lake and along the boardwalk before pausing to rest on a bench and watch the sun dance on the water, the young mothers pushing strollers, the joggers and the retired out for a walk. The regular world we missed when we were at work. We were trying not to think about cancer. We were trying to remain hopeful. We were trying to separate what we feared from what we knew. We knew there was a lump. We knew the emergency room doctor had been immediately concerned. There was still a chance that the tests would rule out cancer. We were clinging to this thought. It seemed more than a hope. It seemed almost scientific. There would be tests. The tests would be negative. As we were having these thoughts, I pointed out a butterfly, a Monarch. It danced before us in its zig-zag butterfly way, floating as if blown about by the breeze but still forging a path forward. Five seconds later there was another butterfly. Then another, and another. A glance down the beach confirmed a long line of butterflies westward across the sand. It was a lovely and unexpected sight and a reminder of the wild diversity that is existence.
We were too anxious to wait at home for the appointment, so we eventually caught a streetcar downtown. Kate had read her latest murder mystery on the bench, and I had stared out at the lake. Once downtown we found a spot on the patio of one of our favourite cafes and settled into lunch. What was about to happen would change our lives forever, but they had changed already many times before. We had been married three years and two weeks. We shared too small children with their father. We had worked tremendously hard to support these children and reinforce the stability of our little step-family. We were built to last and we could weather change, but storm clouds of uncertainty were billowing. A darkness was threatening. We were in an in-between place, caught in a bubble that within a few hours had a good chance of bursting. For good or ill, we wished for clarity.
The breast cancer clinic at Mount Sinai Hospital is like a VIP lounge at a generic well-imagined cosmopolitan airport. It is luxurious and comfortable and terrifying. Kate had been instructed by her referring doctor to get the clinic to do a mammogram, an ultrasound, and a biopsy. This is not their normal practice. Normal practice is to do a mammogram – then, if required, an ultrasound, which is forwarded to your GP, who two weeks later tells you it looks problematic and refers you for a biopsy, and then a month or six weeks after you initially visited the clinic you’re told your test results are back and you have cancer. If we had followed this course, we would have stayed in our bubble a month or longer. Two days later I would go to my own doctor, seeking advice. “You will find the worst thing,” he said, “is the waiting. It will seem outrageous and unconscionable.” On this day through the clinic’s doors Kate went (I was asked to remain in the waiting room, like an expectant father without rights. Kate even asked the doctor to allow me to come into the examination room with her, but the doctor said they didn’t allow spouses. Too much trouble. “We often find,” she told Kate, “that we spend more time attending to the spouse than the patient.” But how do they know this if the spouses aren’t allowed in?) and the mammogram technician said, yes, we need to do an ultrasound, I’ll get the doctor, who said, yes, I’ll do a biopsy. And out came the giant needle and into her breast it was sunk. The tears flowed then. Kate, in her hospital gown, returned to the waiting room, face ashen and tear-streaked. Though the cancer wasn’t yet confirmed (it would be two weeks later in her GP’s office), we no longer held out hope against hope. We began to steel ourselves for an advanced level course in crisis management. The fight (the cliché is hard to avoid) of our lives.
As I write this, that moment at Mount Sinai was six months and two days ago. Kate has completed eighteen weeks (six treatments) of chemotherapy. Three FEC, three D (taxotere). I will not expand on the chemicals involved. Those interested can Google. Besides the chemotherapy itself, Kate also ingested multiple drugs – including an opiate – designed to counteract the side effects of the treatment: specifically, piercing bone pain and nausea. Nothing exists to counteract the waves of tiredness except sleep. There were also drugs to counteract the side effects of the drugs taken to counteract the side effects of the chemo. The result is, the cancer is no longer “palpable,” in the language of Kate’s oncologist. The disease has become invisible to the touch. Where the left side of her breast had once felt something akin to rough leather, hard and aching, now the lump is gone (lumps; it turned out there were three tumors; the largest over five centimeters across, another four, another three) and the cancer may be gone, too. Two weeks from today Kate will be on the operating table and the surgeon will remove her left breast and an unknown number of lymph nodes in her upper left arm (she’s left-handed). If the cancer is gone, why are they doing this? Because we don’t know with certainty that the cancer is gone. Again in the language of the oncologists, the doctors want to offer “the full standard of care.” Removing the whole breast is part of the process of minimizing the risk that the disease will return. And isn’t that the next fear? That this is a disease that never gives up. Her hair is growing back. Her breast will be gone. The cancer, defeated?
That day at Mount Sinai six months ago we entered what Susan Sontag calls “the kingdom of the sick.” Kate has been keeping a blog during her cancer journey and in December, a month after she began chemotherapy, she quoted Sontag:
Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well, and the kingdom of the sick. Although we prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
Kate wrote that blog post as she approached what she called “100 days of cancer.” Two weeks earlier she had shaved off her hair because it had started to fall out in clumps. We had warned the kids this would happen, right from the first moment we’d told them she had cancer. We also told them there was a good chance Mummy would have her breast removed. Our ten-year-old started crying and asked Kate if she was going to die. Our six-year-old grabbed a cloth napkin, shoved it up the right side of her shirt and burst out one of her powerful belly giggles. “You mean you’re only going to have one boob?”
We told the kids within days of having the confirmed diagnosis. It was too powerful a secret to carry. It was too hard to pretend that our lives had not changed. We had been living with the unconfirmed knowledge for two weeks. That is a difficult time to revisit, even in writing this. I felt perpetually nauseous. I felt terrified. I thought I’m not capable of being a single step-parent. I’m going to need to find a new mother for these children. I had immense fear for the children. I thought Kate and I would find a way through this. I thought, I need to stop contemplating the worst case scenario. One learns to prepare for the worst and expect the best, but I couldn’t do that. Preparing for the worst paralyzed me. My doctor would later advise me that one benefit to this disease was that nothing catastrophic was likely to happen quickly, which were words I grasped at. The catastrophic, if we were lucky, could be avoided. It was, however weak, a foundation to build upon. It may well be the most difficult thing I would ever do, but we would throw everything we had at this disease. We would fight, the most common verb we would hear. Fight cancer. It’s what one does, though Kate struggled to see herself as a fighter. The cancer was something that had happened to her; she had passively received it, just as she passively received the chemotherapy. These were things that happened to her, not actions she took. Where was the fighting? The struggle was to maintain hope, maintain routines, maintain a connection to the normal, the kingdom of the well. I had no idea how the children would cope. I feared our household would descend into chaos. My sleep was severely disrupted. I went quickly to my doctor and asked him for some anti-anxiety medication. He provided a prescription and advised me to give the kids a chance to surprise me. “They may be stronger than you think.”
And so it has been. They have been stronger than I would have anticipated. We have kept them well briefed on what was happening and helped them to anticipate what was likely to happen next. Our son had two questions initially: Are you going to die? How long is this going to take? Later, upon hearing that Kate’s chemotherapy oncologist was one Dr. Warr, one of the international specialists in the field, he seemed to decide that everything was going to be okay. Warr was a good cancer-fighting name. Our daughter didn’t have any questions initially that I can remember, apart from finding it ridiculous that Mummy was going to be one-breasted. Kate stopped working in September and had surgery booked for the third week of October, then the doctors decided it would be better to do chemotherapy first. So, at first, the kids didn’t notice much difference in Mummy. In fact, they saw a lot more of her, and their dispositions improved. Mummy was home. Mummy picked them up at school and brought them home for lunch. She didn’t seem like she was in the kingdom of the sick, apart from the copious naps Kate was taking, which was cause of some confusion. Our daughter finally confessed to me, “I don’t believe Mummy’s sick. She doesn’t even say ‘Ow.’”
Eight to twelve months is the answer to our son’s question about how long the cancer treatments were expected to take. The chemotherapy, we told him, would be the hardest part. We have been blessed by the fact that the events have unfolded generally within the expected timelines and the news has generally been good. Has it spread? This was the question at the top of our minds initially. It is a question we didn’t share with the children, and thankfully the answer was no. Bone scan: negative. CT scan: negative. MRI: “significant involvement with the lymph nodes.” This latter fact is the reason the surgery was delayed until after the chemotherapy. The tumors were large; they had expanded beyond the breast. There was cancer tightly tucked into Kate’s arm pit, mixed with the nerves and blood vessels. The surgeon, Dr. McCready, yet another leading international specialist on Kate’s health care team, wanted to shrink the cancer before cutting it out. That was a difficult meeting for both Kate and I. Good news, bad news. Though what McCready said was, “Statistically it makes no difference, to begin with the surgery or the chemo.” What we heard was, large tumors. Inoperable. Risk of losing an arm. Surgery delayed. Oh, yes. And the bone scan was clear and the cancer has not spread to the lungs. Within trauma, all new information is filtered through the fear centre. It took weeks for Kate to conclude that this new course might be better. Once the chemotherapy began, the tumors began to shrink. She felt the chemotherapy attacking them. Felt them breaking down. Went to clinic visits, where the doctors measured the tumors by pressing a plastic ruler up against her breast. The disease was smaller with each visit.
Before the chemotherapy started in the first week of November, Thanksgiving passed as did Hallowe’en. In the kingdom of the sick, these rituals provided a calming normalcy. Family gathered. The kids raced around the neighbourhood collecting candy. Then the chemotherapy began and Kate shaved her head and it became suddenly clear to the children that their mother was sick. “You look like Voldemort, except you have a nose,” our daughter said. Our son immediately asked Kate to buy a wig. A blonde wig. She didn’t want a wig. She didn’t want to look fake. She took a friend to the wig salon at the hospital (prescription for “hair prosthesis” in hand) and bought a wig, a blonde wig. He said it made her look like someone from the Sixties and ran away from her. Our daughter had a crying jag at bedtime until any I had ever witnessed. “I don’t want you to become a ghost, Mummy,” she told Kate. We consoled ourselves that it was good she was finally letting her emotions out (“better out than in”), that she had finally taken down her wall of denial. Through trauma, there is no retreat, only onward, forward, pushing past all the crap and on to the beyond, the new. Our pre-chemo honeymoon had ended.
In this account there is, I’m sure you’re aware, much summary, elision and omission, though no evasion, I hope. Writing this, I feel the creeping nausea returning. This? This was our life? Yes, and much more. (And here I will add a quick full-hearted thank you to all of our friends and family – and the kids’ teachers, our employers – who supported us through our periods of free fall, who propped us up or left us alone, as the moments were right.) Last month there was a column in the newspaper about a family that travelled around the world. They had saved for four years in order to undertake a year-long extraordinary journey. When they returned, their neighbours acted as if they had never left. Wow. Narcissism, I thought. But whose? Is it narcissism to expect others to be transformed (or even interested) in your own remarkable journey? Or is it the disinterested neighbours, so unwilling to engage with someone else’s exceptional difference? The old self/other debate; the challenge of crossing that frontier. Maybe each are to blame. One morning, while I dropped off the kids at school, one of the local mothers asked me how Kate was doing. When I started to tell her, she stopped me. “I don’t want to cry,” she said. Here in the kingdom of the sick, where my family still resides, we welcome all visitors, but we recognize, too, that others prefer to stay away. To watch from the outside, as if through glass, as if we were museum specimens. That’s okay. Here, we are all refugees. We are eager to leave. We have our applications in at the Castle. We are waiting for that labyrinthine bureaucracy to kick into gear. We know that we cannot predict when it will. And like all refugees, we know we will carry our experience from here, where ever we go, forever. Like refugees, too, our knowledge of the outside world has shrunk. Our connections with friends and family is filtered through an electric, sometimes encompassing, haze. What others are up to, what changes others are going through, we’re often too focused on simply sustaining ourselves to notice. Many an Oprah-endorsed bestseller has sprung from this place, but we have no transformative insight to impart. Here, there is no ask, believe, receive. There is only persistence. Endurance. Attempts at balance. The pressure of the fear centre. We focus on what is essential and hope that it is enough. In the fall we had Guinea Pigs, but we couldn’t keep them. We had to get rid of them quickly and I was prepared to euthanize them but was pleased when we were able to quickly find another family to take them in. The line between the essential and non-essential. I kept going to work. The kids kept going to school. Our routines became as simple as they could be, but they exhausted us.
Kate has blogged recently about not wanting to go outside, let alone return to work. Her psychiatrist has assured her this is normal. No need to think about that now. No need to worry about more than you are already worrying about. Post-traumatic stress, is the psychiatrist’s word for this fear and response. “Reality is not a problem,” my friend Phil reminded me last fall. Our fears can be the problem. Our emotional distortions and amplifications of reality can be the problem. The loss of the real, the loss of the normal within trauma, is the problem.
I started this essay with the image of my wife’s hair. It is, still, the symbol of her cancer. She has become, she says, “the typical cancer patient.” Her eye brows have fallen out. Her eye lashes have fallen out. Fair skinned already, she is now fairer still. “Slightly anemic,” said Dr. Warr, though her blood levels were good enough to charge through the chemotherapy without either delay or modification of the regime. At forty-three, she is considered young and, in a word, strong. In two weeks, her hair will no longer be the symbol of her disease. Her hair is growing back at the same time as the weather is improving. Soon it will be spring. The butterflies will be returning. Kate will no longer go to bed with a wool cap on her head. Dr. McCready will cut off her left breast and cut out likely a dozen or more of her lymph nodes. The chemotherapy first turned the tumors to “oatmeal,” then crushed them beyond the “palpable.” Her breast will be gone forever. I have only recently understood how angry I feel about this. Speaking to one psychologist (there are many in our lives right now), he told me that losing a body part is second on the stress meter to dealing with a terminal illness. Let me be clear. I am not concerned for myself, and I am not concerned that I will cease finding Kate attractive. I am angry that this person that I love has had to endure so much and will suffer this loss, too. And just as we were celebrating the end of the chemotherapy and craving a little bit of normal, and trying to provide the kids with a little bit of normal, and preparing to prepare the kids for yet another major medical procedure to be visited upon their mother.
It is a strange geography, this kingdom of the sick. Sometimes, through a trick of the light or other magic, you are able to imagine you are back in the kingdom of the well. These are sustaining moments, intense moments of beauty. May we remember this in the future and never take them for granted. “What did we used to worry about?” I’ve asked Kate. Honestly, I can’t remember. The day she shaved off her hair I was worried about her. As I noted earlier, I expected to come home from work and shave it off for her. She had told me she wanted me to do that, but in the end her intuition told her it was something she needed to do alone. She was the one with the disease. She was the one who needed to confront it, alone in the bathroom with an electric barber’s shear. Zing! Off came the hair. I had wanted to protect her from this lonely experience, but it wasn’t lonely, she told me. It was empowering. Besides, she wanted to protect me. She wanted to look after me, even in this moment of her sickness. Those of you who have seen the recent movie Love and Other Drugs will remember the moment where Anne Hathaway, whose character has Parkinson’s, says to Jake Gyllenhaal, whose character has just made it clear he wants to commit to her: “I can’t ask you to do that.” “You’re not,” he replies. Self/other. Take the risk and cross that divide. That’s love and the opportunity of love. To live with the reality of the other person. To take on that reality as your own and yet be startled by all that remains unknown. To have her shave her hair off because she wanted to protect you. *
So what’s next? What remains of this exile? How long until we can get back, as the Beatles sang, “to where we once belonged”? Surgery is next, only days away. A bloody, pulpy surgery. Kate will have two drainage tubes sticking out of her left side. She will drain fluid for seven to ten days. Her arm will require weeks of painful, frequent physiotherapy. Radiation treatments are likely to follow. A dozen, two dozen. We don’t know. Then there is a five year treatment with the drug, tamoxifen. And we have only the faintest beginning traces of the rage all of the above is unleashing on her hormones, but her hair is growing back. We expect it to come back curly, and we are excited to see what this will look like. A new style for her. New growth. Benign. Beautiful. Her (lack of) hair was once a symbol of her sickness. Her returning hair is a symbol of her health. But I will never view a hair product commercial the same way again, and I will always show the maximum courtesy to every bald woman I ever meet. One of cancer’s recurring phrases is “survival rates,” the percentage of the people who live. “Are you going to die, Mummy?” each of the kids has asked. “Yes,” we’ve told them. “We all die. Eventually.” Survival rates are measured within five years of diagnosis. For cancer of the breast, the survival rates are better than most cancers. I’ve seen rates as high as ninety-eight per cent for women who have the same “hormone receptor status” and other key medical acronyms (PR, ER, HER2) as Kate (though the most important thing, the oncologist told us, is the cancer responded to the chemotherapy; it was pulverized). I’ve also learned through friends of women who were not on the lucky side of the statistics. Death, of course, the backdrop for this entire narrative, but it is the backdrop to life. If you had a two per cent change of dying in the next five years, what would you do differently? Anything? This experience has changed our lives, but has it changed or lives? It’s not over. It’s too soon to gauge its residue. Will it be anything more than fear?
Yesterday I was talking to our seven-year-old about the future. She said, “All the stories about the future, you know, they have flying cars.” Here she screwed up her face in an expression of disbelief. “Like the Jetsons,” she said. “You don’t think there are going to be flying cars?” I asked. She gave me the look of “Don’t be an idiot, Dad,” and shook her head. No. Our little pragmatist. All she wants, I know, is for her mother not to be a ghost and to be able to read the books her brother, four years her senior, now reads with ease. It wouldn’t surprise me if in six months she catches up with him. Actually, I can be more specific about what she wants. For anti-bullying day at school each of the kids in her class wrote a “dream,” following the formulation of Martin Luther King’s 1963 “I have a dream” speech. “I have a dream,” she wrote, “that one day no one will get cancer.”
We all have two passports, as Susan Sontag says. At some point, each of us will cross the self/other divide into the kingdom of the sick. May your journey be of short duration, and may you have as talented a medical team as Kate has had. May your illness or disease be crushed, removed and banished by whatever means necessary. And may your children take it all in stride (while receiving whatever help they require).
It ain’t over until it’s over, and, baby, it ain’t over.
– Dedicated to the breast cancer clinic, doctors, nurses, pharmacists, et al, at Princess Margaret Hospital, Toronto. Merci.
* I can’t leave this topic without a personal footnote. Before I married Kate, I had a girlfriend who, while I was with her, was diagnosed with Multiple Sclerosis. Like Parkinson’s, MS is a degenerative disease. There is no cure (recent medical advances notwithstanding). It gets worse over time. We floundered as a couple, and she broke up with me, saying something very similar to what Anne Hathaway told Jake. That which doesn’t kill us makes us stronger, a couple of people quoted me Nietzsche at the time. I strongly disagree with this. That which doesn’t kill us, traumatizes us, more often than not. I had my own post-traumatic stress after that. I went outside, but I didn’t want to get involved with anyone until Kate convinced me to cross the Rubicon. I was not made stronger by that experience, which destroyed my relationship, and I don’t think I learned anything I hadn’t learned before. In life, things happen, then other things happen. If I’m right, that’s a quote from Robert Kroetsch. I have used it, too, before, in my fiction. Instant Karma’s going to get you. Bang, right on the head. But we all shine on (John Lennon).