December 3, 2012 | The Deep: An Essay

The Colorado River cuts through layers of the earth's surface to form the Grand Canyon, reaching what Norman MacLean has dubbed "the basement of time." Some of the earth's oldest rocks, thousands of feet thick, was lifted 300 million years ago by monumental geologic forces into a great range of mountains estimated six miles high, the height of the Himalayas. Over time, the mountains eroded into a plain. About one billion years ago that plain was raised into a second mountain range, also worn away by millions of years of rain, wind and frost. During later ages, the entire region sank beneath an inland sea, primitive shellfish fossilizing in sea bottoms eventually hardening to shale. Life was crystallized here, caught in time to be forever part of earth. Eons later the region rose again as a high plateau; the former sea bottom now on top and the ancient rocks below. What rises must eventually fall and what falls will rise. The Colorado River then carved the Canyon inch by inch over the millennia - down, down, down - reaching ancient rocks and exposing evidence of petrified life almost a mile below the surface.

***

“She leaned down and looked at his lifeless face and Liesel kissed her best friend, Rudy Steiner, soft and true on his lips. He tasted dusty and sweet. He tasted like regret in the shadows of trees and in the glow of the anarchist's suit collection. She did not say goodbye. She was incapable, and after a few more minutes at his side, she was able to tear herself from the ground. It amazes me what humans can do, even when streams are flowing down their faces and they stagger on...” - Markus Zusak as Death, The Book Thief

***

We drove toward the Grand Canyon last week on a road trip. We were never made it. “Don’t worry, it’s nothing worth seeing,” Doctor Earl tells me. The eyes of the Flagstaff Medical Center’s physician were playful and intimidating, eating away at my last hope of seeing the massive crevice. It is four P.M. and the light outside is fading. Dr. Earl sports a shock of wiry gray hair and peers through thick rectangle frames of glass, without which I wonder if the bearded man would have quite the air of authority he does. “It’s just a hole in ground,” he gives a chuckle, disinfecting silver needles on a white plastic tray. “But I’ve heard it’s a pretty big hole,” I try to grin, attempting to keep up with his morose, doctor-like sense of humor. I am crouched across a sterile plastic table, an insipid green hospital gown falling at my sides to expose white flesh and the knobs of spine that jut up the center of my back in an emerging mountain range. “Think Halloween Cat,” he has told me, and I arch for all I am worth, hugging my knees to my chest. I’m aware that my pale breasts are exposed at the sides but don’t mind, as here I am a body, an object of skin and organs and blood in need of testing and fixing. “Okay, here comes the prick,” Dr. Earl pierces a needle between two vertebrae protruding at the base of my spine. James holds my hand as my nails pierce deeply into his flesh. A murmured “sorry” emerges from my quivering lips as tears begin to pool in my eyes. The needle keeps pushing, forcing, driving itself into the bone. Something is wrong. The “stop” that leaks my lips is the desperate cry of a child. I feel the needle inching out, wrenching itself loose. And again it enters in a new place, driving forward, splitting. “This isn’t working,” a fervent whisper is given from Dr. Earl to the physician’s assistant. “She has thick skin”. I want to laugh and cry out. Thick skin? I thought having thick skin was being able to handle a little prick. I thought thick skin was what I was supposed to have. “What else have we got?” The men pierce a larger needle into my back as my world begins to spin and black and red patches simmer inside my tightly crushed eyelids. I wish my body to fall away into a sleepy abyss, yet the needle persists deeper and deeper, jerking me from any solace I find in desperate fantasy.

Driving away from the Grand Canyon the next morning we made a promise to be back one day, and four days later I am lying flat in a bed at James’ grandfather’s house. It is the night after Thanksgiving. I urged James to leave tonight, to visit friends of his childhood in town. For days my head has been plundered with needles in any position other than lying dead flat, and I have relegated myself to bed, away from the world that blinds my eyes. “Everything is fine,” I have told my mum and her partner, Guy. It’s just a spinal headache: leaking spinal fluid. They’re common after a lumbar puncture. Yet Guy has just left a message on my phone. I clasp my legs that are beginning to sprout soft winter hairs as I rock side to side. “This is serious. I know it is heavy and this may be the most serious message you have ever received,” Guys’ voice echoes from a million miles away. “Bethany, you have two options. You can lie back and pretend nothing is wrong. You have one of the highest pain thresholds of anyone I’ve met and I know it is tempting to do so. Or, you can choose to fight. You can start banging on the tables. You can make this choice and only you alone can make it. Bethany I just don’t want you to finally see someone and they have to say, “I wish you had come in sooner”.” I know Guy is speaking on behalf of my mother and is speaking with love, yet my breathing hastens. “I know this is heavy but it is time,” he says. “It is time to start banging on the tables”. The room is cold and silent apart from my raspy breath. It’s just a headache, that’s all we know, just a headache. Yet why, I ask, was I just up a few minutes ago, secretly and furiously punching a will into a keyboard, making promises and prayers to a God I don’t believe in? Why do I fear for life and death in a way I have never felt before?

I am on my knees to life, I write. I promise I have more to give to this world. I promise I have more love to give. I promise I have a legacy of love to give. I’ve been thinking about it as I lie here in fear. If or when I make it through this, I need to have James’ child. I’ve been so afraid of that thought. I’ve avoided it like the plague. But I realize now the fragility of life. I’m not guaranteed. My mind is wandering. Imagine if I was gone and there were nothing left, no bastion of our love, no legacy of the dream we share? He deserves a part of me. I realize now that love truly is everything, love and family. Nothing else really matters. Tears rack my body and I begin to shiver. I’m trying to be strong but I’m scared. I’m really scared. I know something is wrong.

***

“A small fact:

You are going to die.... does this worry you?” (Zusak, 1)

Like many humans, Death tries to find ways to give meaning to his work in The Book Thief, the favorite novel of my childhood. Death, the narrator, collects stories of courageous humans such as that of Liesel, our young and idealist main character. He searches for hope in the gathering, reading, and telling of human stories, saying it is, "to prove to myself that you, and your human existence is worth it." At the beginning of the novel Death says the most painful part of his job is seeing, "the survivors, the leftover humans…the ones who are left behind, crumbling among the jigsaw puzzle of realization, despair, and surprise. Unlike any ideas of grim reapers and sickles, Death tells us that if we want to see what he looks like, we should "find a mirror". All humans die, and so, he says, we all look like Death. In a way, we're all united with Death, and he's the thing that unites all of us. He is part of what makes us essentially human.

***

It was always a race to find my brother’s grave. My family would visit him twice a year at the Awanui cemetery. My other brother Aden and I would leap out of the car and begin to scamper through the crowded concrete rows, our small hearts beating and eyes darting across the sea of pillars. Our brother, Campbell, rested somewhere between five and seven rows back from where we would park, and about five segments inward. This is very loosely approximate: we were never able to keep count to any more definitive measure as the cemetery was designed like a racetrack. So it was that Aden and I never knew quite where to find him, as we never knew if we were parking in the same place. The asphalt strip encircled the graveyard in a perfect oval, cutting a neat path between the fake flowers and neatly trimmed gardens that separated the military and commoners, the older sections and the newly passed on. If you kept on driving you could drive around it forever.

***

 “The cemetery is an open space among the ruins, covered in winter with violets and daisies. It might make one in love with death, to think that one should be buried in so sweet a place,” said Percy Bysshe Shelley in Adonais. To one that had to visit a sibling twice a year, this proposition seems rather preposterous. Yet if you look at a cemetery without one’s own selfish fear of soon abiding in such a place I suppose it really is a rather beautiful place. There is not a place that brings people together in such a reverence for our fragile life, with its scattered flowers and wreaths, climbing with ivy and green mosses. In fact, the cemetery, in its tranquility and unity, could be rather heaven-like. "Since the soul of the deceased was thought to need provisions for various wants in post mortem existence,” John Heller writes in Burial Customs of the Romans. “The ground about the tomb was often laid out as a garden, where the spirit might wander and enjoy itself in its own bit of the Elysian Fields”. Life divides many, death brings us all together.

***

There was once a solitary tree in the Awanui cemetery. It stood deep within the asphalt oval, one row back and three sections beyond Campbell’s grave. I don’t remember what type of tree it was, but I do remember it being deciduous, unlike the native evergreen trees that grew in the area. On Campbell’s birthday, August the 25^th, the tree would be stark naked, jutting up amongst a grey concrete sea under a grey sky. On January 6^th, the day he died, acid green leaves were budding, cloaking it from head to toe with new life.

I realize now that we always visited the cemetery at two distinct times of year: the very middle of summer and the heart of winter. In my faded memory there was not a time in January that Campbell’s small patch of earth in the middle of the sea of concrete wasn’t bathed in sunlight. Meanwhile there was not a single time in August that I didn’t catch a glimpse of my mum pulling her coat tightly around her body as she stood on top of my brother under gathering rainclouds. There were never any birthday balloons. This realization seems contradictory, yet I can’t manage to wrap this thought into a profound metaphor. He should have been born in summer like Aden and I were, when the leaves were budding, and he should have died in winter, not the other way around. Some say death is “meant to be”, but to us, it always seemed unfair.

***

The word cemetery derives from Greek koimētērion, or 'dormitory', which comes from koiman, 'put to sleep'. “Like death warmed up” means to be tired or ill, and the Germanic word “Tod” is the root of ‘to die’ (here I think of Hot Toddies and sleepy winter nights). Indeed I found cemeteries to be strangely sleepy places – there was something dreadfully calming about sharing a field with thousands who have fallen into the deepest slumber. After Campbell’s death due to suffocation after rolling over in the night, sleep didn’t come to my mother for three years. I wondered if she too, feared dropping into that same eternal state. As for myself, a young girl at the time, I don’t remember ‘sadness’ yet do remember long nights lying awake, defying sleep in fear of not waking up. The concepts of sleep and death blurred over the post-mortem months. Perhaps sometimes it was the simple daze of life, passing along from day to day. Living without sentient consciousness didn’t seem too different from death (I still feel this in shopping malls sometimes).

***

The tree was our one point of reference. I arrived on a hot summer’s day after being away in the United States for two years. My mother waited in the car first as she always had, and I climbed out to begin the search. Aden, walking beside me, veered off at a row that I am sure is too early. I chuckled. Wandering aimlessly, I tried to find clues in the names I have scanned over for years, treading over the grass growing from their remains.

Here is the old man and his wife who died together, they always have red roses placed neatly above them in silver pots of water. Here is the boy who passed at Campbell’s age who has a giant powder blue teddy bear engraved on his headstone. Here is Sophia – she was seven. Here is Mr. Matthews, whose stone is cracked down the middle with moss growing in the crevice. My Poppa tried to clean it off for a time – it grew back every time and we soon gave up.

With frustration, I span around in search of Aden. Pacing a few rows ahead of me, his head was cocked to one side in concentration as he scanned the rows. My brother’s feet were steadfast, no longer running as he once did, but methodical in his quest to find his younger brother. His shoulders were now broad and hair darkened, his rounded cheeks of boyhood given way to chiseled cheekbones. It was a strange place to realize my brother was no longer a boy. “Any luck?” he yelled at me, his hands raised slightly in defeat. I shook my head and he began striding toward me. Only then as I watched him striding tall above the strewn graves I realized the tree was gone. My jaw fell. Aden now at my side, his gaze also reached the empty spot my eyes were locked onto. With a sharp inhalation, forgetting our quest, we wandered over to the tree while a certain sadness gripped my heart. I wondered if this is the tug of sadness one is supposed to feel in a field of the dead. A shiver ran down my spine. 

The stub jutted from the ground, its trunk beginning to crack apart and gather rainwater in its crevices. Aden reached it at the same time as I, and together we stood peering at the quiet passing of life. “I guess we took for granted it would always be here,” I said to my living brother, still staring at the wooden stump. Behind us, our mother had arrived at Campbell’s grave. Silently apologizing to her son in the ground beneath her for taking for granted that his breath would continue, she knelt to the ground.

***

“I am constantly overestimating and underestimating the human race - rarely do I simply estimate it. The same thing [can] be so ugly and so glorious, and its words and stories so damning and brilliant. I am haunted by Humans.” (Zusak, 550)

***

We are in a lavish hotel room - my mother, James and I. My headaches have departed and the three of us have walked out of our third hospital today arm in arm after three days spent as an inpatient. James and I have arrived back from dinner, a festivity my mum professed not be interested in, to find a half-empty bottle of wine. She wakes as we walk in. “Why are you back?” she asks, bewildered. Her blonde hair nests softly above her head and she blinks as we turn on the lights. “Aren’t you supposed to be gone? Where is Guy?” I walk over and stroke Mum’s forehead. “It’s okay mum, we’re back from dinner, that’s all”. I sit beside her on the couch. “Are you drunk?” I ask gently. “Oh, maybe,” she grins girlishly at me. “We brought some food for you mum, here, I’ll help you up”. And so the three of us sit around a polished hotel table high above Seattle, the city lights outside glimmering their winter lights, eating James’s birthday cake (it’s his 28^th today). Around the table we talk about Campbell for the first time. My mum tells us of the unfairness of it all, how she wishes Aden had a brother to grow up with, and how she still thinks of him each day. My mother’s eyes lock onto mine. “Death isn’t fate. I always hated when people thought my son was supposed to die. He should have lived.” I stare at her. The room is silent. Death hangs in the air like an unwanted guest.

Death: the permanent end of someone or something. Today it was confirmed a brain tumor is spreading through my right frontal lobe. Today I lay in a hospital motionless, peed in a bedpan too small and felt the warm liquid run down my skin and soak the bed sheets beneath me. Today the tears of my family and I sitting in the stark room sprang like a mountain spring, and today I told my husband that I would always love him and that I’m not afraid of dying. We lie awake every night in the large hotel bed, as the lights outside glimmer and our tears become one, knowing we will always be together.

***

I’m not supposed to talk about death and I’m not supposed to write this. I’m not allowed to wonder if I’m dying. I’m not supposed to plan for death, or think of it, or look up the meaning or origin of it. Death is a dirty, soiled word. But death, it’s a fact we all live with. It’s a place we are all moving toward. On Tuesday I will have a portion of my brain removed. A week later I will find out what kind of tumor I have, dictating the course of my remaining life. I no longer pretend that it will be forever. Tumors, they have told us, don’t go away. They grow by invasion. The average life expectancy ranges from eighteen months to five years. Granted, I plan to live much longer than any estimate they lay upon my life, as my mother cannot lose a second child and James cannot lose his best friend, colleague and wife, not yet. Yes, my heart aches as I write, and the tears I have learned finally to spill pool beneath my eyes.

We will return to New Zealand soon. We will return as autumn approaches the Northern Hemisphere. This time on August the 25^th I will kneel at the grave of my younger brother with a reverence for the impermanence of life never known to me before. Human to human, animal to animal, I will kneel at the base of the tree, forever now bare. The road around the cemetery will likely still be an unending asphalt path. And as usual, we won’t find my brother until passing the graves of many other fellow spirits who have fallen into their dormitories, from where they slumber eternally to sip their toddies, reminders of our lucid dream. Perhaps I’ll join my brother with these tired souls someday. Yet isn’t that the real key? Someday.

It’s a cliché a million times over, but it certainly stands. We are all going to die. By no means does my brother’s tombstone, or my brain’s tumor bode that I shall join the depths in an unnatural order. I do not resign my body. Not yet.

As for my spirit, the physical world may never take that. I’m told that energy cannot be created nor can it be destroyed. It can only change form. Does it not do that constantly, even in a lifetime? Mother’s lessons become truths, dreams become quests, journeys fulfill our metamorphoses, and new perspectives dictate our daily choices. In love and family my spirit, like all spirits, will continue shall I join my brother. I’m not supposed to write of death. But I cannot and perhaps should not run from the word. I am comforted that a garden awaits us: our body and our spirits. Cemeteries are indeed the Elysian Fields, the continuation of human life, the garden of our souls. It seems that the earth remains our eternal home, the most beautiful and sacred garden of all.  With that said, I still plan on returning to the Grand Canyon, whether it be in the near future or years down the road. For if I am to end in a hole in the ground, or ashes in the sea, why not take solace in the greatest grave of all? One that freezes time in fossils, in which ashes can breathe and rivers run eternally?

***

“At some point in time I will be standing over you, as genially as possible. Your soul will be in my arms. A color will be perched on my shoulder. I will carry you gently away.” (Zusak, 4)

December 4, 2012 | The Knife (from the other side)

“A stillness settles in my heart and is carried to my hand. It is the quietude of resolve layered over fear. And it is this resolve that lowers us, my knife and me, deeper and deeper into the person beneath. It is an entry into the body that is nothing like a caress; still, it is among the gentlest of acts. Then stroke and stroke again, and we are joined by other instruments, hemostats and forceps, until the wound blooms with strange flowers whose looped handles fall to the sides in steely array.” Richard Selzer, The Knife

It’s 3.20 in the morning and sleep is again failing me. The knife approaches with the ticking of each second, its blade is sharpened, poised, ready.

“Sickness” is a sallow word, one that this morning, I refuse to take on. I am not sick. I am not a victim of a shiny metal object that acts out its final will. Sometimes, I refuse to sit on the patients’ chair. I greet doctors with a firm handshake. With a newfound reverence for their profession, there is one thing that these men and women cannot forget despite its ease to do so. On the other side of the knife is life. It is entire families and memories and pains and joys. This could be you, your daughter, or your best friend. Remember this.

We were walking along the Western Seattle waterfront the other day, first grader Eve and I wandering a few paces behind collecting flowers, rocks and shells. Joy radiated from her young face as we discovered bright red berries that spurted dye and purple flowers that had already began to crust and dry as delicate paper petals. “Are you sick?” Eve suddenly asked me, he brown eyes staring up at me.

Eve may visit me in the hospital this week at the University of Washington Medical Center and I will look “sick”. My head will be shaved to the scalp and my skin flecked with lavender IV bruises and the blood that gathers in their sterile plastic tubes. I may even feel “sick,” mind spinning with anesthesia and sleep once again availing my body with hourly vitals checks to monitor that state of the life within me.

It could be easy to be a victim. Let me tell you, it is easy to walk through corridors and sit in buses and wonder, ‘why me?’. Why do I have a tumor growing in my head and you don’t? And he doesn’t, and she doesn’t? How can you laugh freely and carry on your life as if nothing is wrong? Now this – this is tempting. Yet I let my head hang and grasp onto the flecks of joy that remain in my own mind. Within me lies the hope of a contemplated future, the joy of love despite pain, the power of friends and family and an outpouring of love that only a flirtation with our own mortality can bring to the surface of our shared humanity. It’s the most powerful human force I have ever experienced.

“You cannot separate passion from pathology any more than you can separate a person's spirit from his body.” - Richard Selzer, Letters to a Young Doctor

So in saying that, and with just 15 minutes until I am expected to rise, disinfect my tired body, and catch a 4.45am cab to the Surgery Pavilion where I will be stripped into a gown, my hair shaved and my body again relegated to victimhood, I can confidently say that I am lucky. I have never felt so lucky. I spoke to a man doing vision field testing on me the other day in the Harborview hospital. We spoke of true humility that comes with realizing our own mortality – the humility that leaves you broken and open yet empowered as you realize the great power that comes from within and the power of human beings. I may not believe in a monotheistic or polytheistic god yet I’ve never so much believed in the intrinsic, loving, spiritual power of the human mind and the human body. Prayer and meditation allows us to enter into realms of power that are inaccessible simply as objects of flesh and bone. We are fighters.

The world still sleeps as I farewell another chapter in life. To be honest, I’m excited. I’m excited to smile as I fall asleep in the bed this morning and I’m excited for the crazy wigs to cover my bare head (of which we all have one) already shipping from the mighty amazon.com. I’m excited to wake and know most of the tumor is gone, excited for the crazy hippy teas I know my brother is going to make me drink as ‘treatment’ and excited to be once again able to move and run and dance with more joy and gratitude than ever before. This morning I choose to trust the knife and with honest dedication trust the power of the human soul. I choose not to be sick, and choose to remember the joy of the smallest flower and shell and spoken and unspoken word.

“You turn aside to wash your gloves. It is a ritual cleansing. One enters this temple doubly washed. Here is man as microcosm, representing in all his parts the earth, perhaps the universe.”

The knife patiently awaits and I am ready.

December 12, 2012 | Rainy Skies and Beautiful People

Hello!

Well, we're back in grey Seattle. Still with the coolest gang of people in the world - James by my side, my mum and her boyfriend Guy, the cutest couple ever (Well...second to James and I of course).

Today we are finding out the pathology report (eek!) and having my cool, rockstar staples removed. What we find out in the next few hours will determine the course of action we'll take in life over the next few years - perhaps longer.

There is a possibility that things may be able to remain as normal ("normal" is a funny word right now), and there is also a possibility we may have to move to New Zealand, depending on treatment options. After we've chatted about it with the doc and each other, I'll let you know.

I've been feeling better every day. Still waking with awful headaches and my brain is still making funny noises and moving (it's creepy) but to be honest, I'm enjoying being bald. It's fortunate I've always enjoyed social experiments and pushing aesthetic boundaries.

We were in a sweet little French restaurant last night and a thin, blonde, heavily made-up waitress was staring at my head for a lot of the meal. I felt a little shaken, but smiled anyway. None of that stuff seems to matter anymore, as I truly have experienced the very best of humanity throughout all this, and have never so much believed in it.

As a friend said last night, in a way this has been a reminder of all the love that's out there, and it's just a shame it takes something like this to bring it out. But I don't really think it's a shame. I know both love and pain at a much deeper level now and will always be grateful for it.

We've had so many questions we've struggled to articulate,  and any answers we have been able to find have been typically vague. We'll make sure to bombard them with questions today.

I can't help wondering what went with the part of my brain they took out - I've joked with James it was 'urgency' as I've been rather slow lately, but I'm sure it's just circumstantial. Life just seems to slow down after something like this. I'm floating around like a ghost.

I guess we all need reminders to slow down... and trust that life will all work out. This was a pretty effective one. I've been so lucky to have people to trust and lean on during this time, allowing me to float slowly in this mist I find myself in. They've been wonderful.

Alright, we're off, back to the hospital. See you later! 

January 14, 2013 | Straight Talk

Cancer has always been such a mysterious, clouded word that seemed to call for whispered tones if it were to be mentioned at all. The very word, cancer, has a bitter taste.  Even in my own family, it was a big hush-hush that no one spoke of. Considering this, it was surprisingly encouraging to have my cousin honestly tell me about her experience with the C word after my asking.

For weeks after losing my hair I’ve had people glance and look away hurriedly, the girl with no hair only spoken of by small, untrained children and drunk teens at the park. I loved that. I wished that more people would openly ask, “why is your hair so short?” or other questions that are often considered 'rude'. It’s so much better than having people look at me then glance quickly away.

As much as I enjoy writing ‘fluff’, I was reminded by the interest of my dear friend Nicola that cancer is something people hear of often but don’t really know that much about unless we, or a close one, have had it. It’s time to do some science. I’ve avoided my bulging medical file for a long time. It currently sits in a plastic drawer on top of a chest of drawers downstairs in ‘the den’, a large basement-type room that James and I have been staying in (although it’s now just me and my book). I’m just about to go downstairs and collect it, and unveil this thing that I have managed to so far avoid.

Okay, here we go. I have opened it.

Lying on top is a wad of paperwork from fertility associates. Like previously mentioned, I’m currently undergoing IVF. It’s two weeks of self-injecting and preparing syringes, but by now I feel used to doing things that aren’t pleasant. And plus, it’s nice to be doing something medical that is positive.

After these consent forms, I reach the pile of bills. We stashed them away in here after reading them – about $80,000 with insurance ‘still pending’. It’s funny to see charges for medical mistakes, more charges for pain relief, and then the bills to fix them all sitting together. I guess you just have to see it all as a little comedic.

Below these lovely items, I find copies of my referral from UW medicine to NZ doctors. The reason for the urgent request reads:

“21 YR OLD FEMALE W/DX OF ANAPLASTIC OLIGODENDROGLIOMA. MOVING BACK TO NZ TO PURSUE TREATMENTS POST SURGERY.”

After this I move on to my ‘Outpatient record: Final Report’. It is written by Dr. Chamberlain, and begins “at Dr. Dan Silbergeld’s request, I had the pleasure of seeing Bethany Lowe, her husband, James, her mother, Melanie, and her mothers friend, Guy, in consultation today in Neuro-Oncology clinic at the University of Washington on December 12, 2012. Bethany is a 21-year-old, left handed, New Zealand female who developed blurry vision in her right eye and progressive headaches prompting MR imaging that demonstrated noncontrast-enhancing tumor in her right anterior frontal pole. She underwent resective surgery at the University of Washington on December 4, 2012, and, based on postoperative imaging, had an image-verified complete resection of a noncontrast enhancing intra-axial tumour. Histopathology was consistent with anaplastic oligodendroglioma that manifested polysomy with relative deletion as well as IDH-1 mutation. They present today, approximately 8 days postoperatively, for consideration of postsurgery therapy. She is otherwise neurologically intact* and fully functional in activities of daily living.”

The report then goes through my family history (null), social history (non-smoker and drug taker, only social drinker), allergies (null), surgical history (null), review of bodily systems (all 100%), a physical exam (good), nuerological exam (good). In the ‘plan’ section, after a whole lot of medical jargon suggesting radiation therapy followed by PCV chemotherapy treatment, it reads, “A median survival in such a patient group is 12 to 14 years as compared to 7 years with radiation therapy only as primary therapy and reserving chemotherapy at time of disease recurrence.” Wikipedia says 3-5 years – to this, I regret trusting Wikipedia in the past and choose to disbelieve it.

So there it is. It then discusses the doctor’s reason for preferring PCV treatment to the newer, less tested, Temozolmide. Apparently next year there will be a large international clinical trial of this new drug, which is half the toxicity of the classic PCV. PCV chemotherapy is the classic ‘one size fits all’ drug that is used for most high-grade brain tumours. It shows no mercy to all other rapidly growing cells in the body. Hence, the killing of hair cells and sex cells (premature menopause).

PREOPERATIVE DIAGNOSIS: Right frontal brain tumor

POSTOPERATIVE DIAGNOSIS: Right frontal glioma

Wow. I just stumbled across the description of the surgery. “The head was shaved, prepped and draped in normal sterile fashion…we used a sub-pial technique along the mid line, exposing the cingulated sulcus and the pericallosal artery…” etc. It continues like this, sterile words describing the patient as an object (“I am titaaaaniiuuum” my mum began singing to me when she found out that I have titanium plates holding my skull together). It’s so strange reading this, and anaesthesia continues to amaze me. Some people say they can remember falling asleep in general anaesthesia, I remember absolutely nothing. Granted, for brain surgery they also give you pre-anaesthesia ‘relaxation’ drugs, but it’s still an overwhelming read.

And now we are here at the end of the first day of radiation treatment. I sit at the computer in the study in Wellington, New Zealand listening to my mum, her partner and a friend talking about my tumor. It’s the same conversation. Mum is asking why not a single person has asked me what I was doing weeks to months before the diagnosis, which is when the tumor apparently began to grow. In a way, I’m with her on that. I know those in the medical field like to plays things safe and not make claims, but surely someone would at least ask. Is there not a chance that people with oligodendroglioma’s having similarities in lifestyle or situations?

Radiation isn’t fun. I was looking forward to it and went in with a good attitude, but I think I would be kidding myself if that was ‘fun’. Tomorrow, I will be able to take in music to listen to in the room in an attempt to drown out the droning sound of the radiation beams permeating my skull. It’s a bit perturbing. But all is well, and there are only 29 days of it to go. Symptoms should begin to kick in soon enough and with radiation to the head, they are mostly permanent. There is a good chance I will become more like a male long term – losing the ability to multitask and some computational struggles along with short-term memory. Personally, I don’t think a lack of ability to multitask and to have short-term memory really affects happiness levels anyway, so it doesn’t really concern me. I will keep my brain active and used though, and fight these effects.  The hair loss from radiation is permanent and will only be in the spots where the beam goes in and comes out. 

After six weeks of radiation at Capital and Coast District Health Board under Dr. David Hamilton (he is great), I’ll have a three-week break before the even-less-pleasant part, chemotherapy. This will go on for about eight months. So I’ll be in NZ for this year for sure.

To be honest, I didn’t believe it was really a tumour until not too long ago, and it still amazes me even now that it’s real. It’s been good to force myself to read the reports and know that they aren’t simply radiating regular brain. I’ll get back to the fluff soon for lighter reading, sorry!

* James would be right to question this.  

January 28, 2013 | Hair

Five minutes ago I had an itch on my head. Just like any other itch, this itch demanded that I reach my fingers up and, making sure not to use nails (it can be tempting) give that spot a good rub. It was a good itch.

I just so happened to look down at my fingers afterward, perhaps to thank them for relieving the itch. My hand was covered in a big clump of hair. Now, no matter how much you are prepared for the fact that your hair will be falling out this week, the first sighting of a hair-covered hand is still a shock.

I’ve been meaning to write about hair for a while now, and it seems like a fitting time to do so. Even before this experience, friends and family can attest to the fact that I have always hated the way something as futile and dead as hair can define people. I hated the way people thought they were able to hide behind it – that you could hide a face between shocks of hair and it really doesn’t matter how your face looks – no, almost certainly it’s the dead follicles around it that people will notice first.

This was a major reason why I thought it would be fun to try cutting my hair off before in my life. And dying it, dreadlocking it, straightening it (a mistake), having it torn at twice in West Africa to experiment with fake braids, etc. I guess if there was one style I never thought I would electively try though, it was baldness.

--It’s lucky I don’t need to try this particular style quite yet, that comes with chemotherapy. No, this new style, I have been informed by doctors and nurses, is likely to be a permanent “extreme receding hairline”, a hardy patch left on top while the rest of it just disappears…

Lucky I’ve always been experimental, I think. Lucky it’s me and not some other 21-year-old female who absolutely must have their hair. I’m not thrilled, but I’ll take it (I will also take the grant for headwear and wigs of about $2300 from the New Zealand government, though, thank you!).

I am reminded now that not everyone has the fortune of having hair. There are many out there with, beyond cancer, medical conditions with which they have trouble growing hair. It’s like the reminder that not everyone can have children – you don’t exactly want to be surrounded by a whole lot of mothers and babies when you can’t have children. You can, to an extent, avoid this situation…but there is no way to avoid people with hair.

Sometimes when a bout of “unfairness thoughts” hits me, it can be tempting to say to people going on with their regular lives who don’t look grateful for their existence nasty things like “hey, celebrate, you don’t have cancer,” or something awful like, “hey, you have hair, how wonderful!” But this, of course, would never happen (since being with James I have learnt more etiquette than that). Some animals don’t have hair anyway, think of them! Okay, well most do, but what about the poor little Sphynx? He doesn’t need a hair straightener or dye, or whatever other contraption hair needs, no he’s quite content to let people love him for his lack of fluff.

I really am not sure what I am trying to say about hair here. Is this an ode to my hair that has been coming out as I have been writing? Nope, this is something I can cope with. Is this to make all you hairy people out there feel bad about taking for granted of having hair? That is far from it. Then what am I trying to say?

Perhaps, yes, it is a farewell to that hair. I only hope that people I see each day can have the decency to respect this different hairstyle of mine emerging, and only hope that James, although he will try to pretend not to care, will come to learn that beauty is so much more than dead follicles. In fact it’s really for myself, the final test in a lifetime of hairstyles to see if I really don’t care like I have tried to prove I didn’t. 

February 4, 2013 | Tit for Tat

This blog is inspired by Nina, the main character in Offspring (the TV series mum and I are currently watching). When everything in her life was going wonderfully, she imagined that perhaps a bomb would fall from the sky and land on her. Do we live in equilibrium? Logically, I have never believed this, but I think on some level most of us think that life can’t go well for extended periods of time without something good happening or vice versa.

I write this as I am sitting here feeling fabulous, while I am ‘supposed’ to be feeling bad. Radiation has passed the halfway mark in week four. Yes, radiation to the brain is cumulative in it’s effects and I may well be regretting saying this soon, but I have to be honest and say that I worry that when James gets back in a few days time, I won’t be feeling as wonderful physically as I have for the last few weeks (By ‘wonderful’ I mean normal). I would love to have just a few days with him side-effect free, yet perhaps I should give up this dream for now and reserve it for after all this is over.

It’s that “supposed to” word that is strange there, though. No way, I don’t have to be miserable and in pain until this is over! I won’t be. The fact that the road trip we were on last November (that could have been labelled “the road trip from hell”) was still fun despite four different hospitals and the worst pain I have ever experienced, and walking out with a diagnosis of a brain tumor was still a blast gives me hope. It’s completely possible to enjoy life when in physical discomfort, provided it is not unbearable.

In my meditation class just down the road last night they were talking about how we can create our own happiness within regardless of external circumstances, my mind was racing with disagreement. While I agree that a majority of the time the common cold can be halted by the power of the mind, cancer is different, and whenever someone says something nice and airy fairy like, “you create you own reality” I can’t help but wonder if they’ve had an ailment (not ‘illness’) such as this. Probably not.

Back to the equilibrium thing. Yes, I do believe that the greatest challenges have the greatest rewards. But as we all know, there’s whole lot of choice left out of this equation. If you are happy in your life, you probably deserve it and have created it. I feel like I’m balancing on thin ice saying that I am truly happy at the moment, as I would feel like a fraud if I say that and then in a few days time am feeling down about some pain that nags my body. And then I remember that happiness is external from all that. It’s hard to express to everyone just how bursting with joy I have felt lately, as they assume I must be in agony constantly (I’m not blaming anyone for this – it’s sweet). I’ve been learning about how the quality of our lives is so much more of a choice than I ever thought it was, despite knowing that already at some level.

A ‘bomb’ did drop on Nina – her apartment burnt down. However, the handsome man she is with who treats her beautifully suggested they move in together, so all is well. Good will come from this. It has already. 

Here's my new hairstyle - thank you to the NZ government for giving $2300 for wigs and hair accessories! 

February 14, 2013 | Flossing my teeth

Last night. I have finished brushing my teeth, paying particular attention to scrubbing up and down at the back after a dentist’s recommendation. I grin at my balding self in the mirror. ‘How wonderful to have clean teeth,’ I think. Reaching for the dental floss, I pause.

Why am I flossing?

A mass of thoughts flood through my mind, tumbling and churning. I am reminded of my own mortality. Why does it matter anyway? If I’m not supposed to be here in twenty years, what use is this extra time spent flossing my teeth, which will last that long perfectly fine with just brushing? If our long-term future is one that James will most likely carry, shouldn’t I simply be encouraging him to floss his teeth, considering mine are already better cared for? Am I wasting my time on all this irrelevant stuff? Am I losing sight of what matters?

It goes on like this for a while until I manage to stretch the grin back across my face. “It makes me feel good,” I tell myself, “that’s why.” I begin to floss, making sure to get between each and every tooth.

Yesterday I had written a quite serious piece about futility and purpose, and the role of the little things in life, and keeping hope. But I read through it and realized that it wasn’t a very accurate reflection of my life at the moment. You see, every day is a pleasure.

When I’m not throwing up (like I did in the car today) or entertaining headaches, or sleeping, life is brilliant. I’ve been able to continue as normal really – with the difference being living on the other side of the world and living a completely different lifestyle.

…improved, I could perhaps say. A little lacking in friends and those I love, I’ve had a lot of fun wearing wigs each day, to the point that I feel sorry for people who are always stuck with the same hair. How boring! Each day radiation is a delight – being greeted by Sharon at the front desk, receiving the “hello Darling, you are looking gorgeous today!” and going for little walks hand-in-hand with James at dusk. The small things in life like watching a carrot be crushed and squeezed in my juicer, or cooking a four-course Valentines meal with James for mum and Guy are perhaps more delightful than ever…as is the sight of a sunset and the lights flickering on in the city from our place up here in the sky. To lie down at the end of a day and know that it’s been a good day has an extra sweet feeling of success when you’re not supposed to be feeling good.  Ha! And while on the wonderful things in life, I can't leave out that wonderful thing called romance (can I say this is more fun with wigs too, or is  that too much for the public?). For everyone who was involved in the making of James and Connor's Valentines day creation - click here - I can't thank you enough. It brought tears to my eyes.

Today, however, has been a little more difficult. This morning at 8.45am I had the second egg collection procedure. I was worried about it due to the last one being so painful (for so little results) and had mentally, and physically, prepared myself. After eating ‘fertility foods’ for weeks, not doing any strenuous exercise and putting on a couple of kilos, I was hopeful. Plus, this time we weren’t dealing with defrosted semen.

The procedure was still painful, but much better. They gave me a high dose of sedatives (hence the nausea today) and had an expert find the vein to put it in, saving the six or so jabs they gave while trying to find the right one last time. From this point I don’t remember much, as I was rather loopy. James has been mocking me recently about my inability to act with any convincing emotions beyond happiness, surprise, and love (I fail miserably at ‘anger’). After the drugs had kicked in, I told him I was ‘just acting’ loopy, which improved my score as an authentic thespian.

Anyway, despite the higher dosages making today unpleasant, and the now familiar feeling of knives in my uterus each time I move, it was most certainly worth it. Although I can’t be too sure at this point how many will survive, they collected 12 eggs, which is at the upper end. Last time with six there was only one success, and so a moderate hope would be three more considering the better sperm situation. I admit I’m smiling as I write this. It’s weird how this sort of thing can make those innate ‘motherly instincts’ come out – we were laughing as I held my stomach last night to protect the eggs and said I was incubating.

I’m not sure how I get back to the flossing thing from this tangent, but I guess it all boils down to that all-important little thing called hope. I’ve had to make a conscious choice to live for the future and still make plans…albeit different ones to those before. It could be easy to give up the idea of a long-term future, and start preparing for the worst, but even if it is ‘logical’ to prepare for the worst, who really wants to live like that?

Tonight will be the first night James and I are able to drink (a glass of) alcohol, so I’ll leave you with a toast – here’s to the future!

February 16, 2013 | Little guys

I just wanted to share some good news - advance apologies if this doesn't interest you - but we had the regular call this morning from the embryologist and all seven of the eggs that fertilized have divided! Another one also 'came to life'. By this stage last time there were just two little dudes hanging on. I am being careful not to get too excited (James keeps me in check with reality) but so far, things are going well.

Aden is down for the weekend and the three of us are heading to Zealandia, the bird sanctuary nearby, for a couple of hours. It's the first time the three of us have been together since we went camping about a week before I left NZ. It's funny it took this to bring us back together again. 

February 21, 2013 | Hair #2

We had a rather special visit from Jenny Rankin this week. Amongst the delight of swimming naked on the beach where she and her husband lived 22 years ago with my parents (me growing in mum's tum) girly massage breaks and laughter over wine, Jenny encouraged James and I to begin the transformation of our words into images, both moving and still. Now me being a technophobe, I found this rather daunting.

The reason why I am excited, however, is the fact that I often find myself unable to adequately express the reality of our life here simply in words. Each visitor we had had here, including Jenny, has found it pleasantly refreshing to join us in the daily routine of radiation. While the machine is certainly space-age and a little intimidating, seeing the smiles on everyones faces and the evident support of all the staff, alongside our own happiness, the picture of treatment is a lot more encouraging than one may imagine.

It's entirely possible to be happy even when tired, or in pain. I know I've said this before, but now we will begin to show you. The first way in which I'll show you is displaying the issue of baldness and wigs. Now I know that the prospect of having permanent hair loss may seem a little depressing to some, but I've done a cost/benefit analysis and come to the conclusion that no hair is better than hair.

Here are my reasons:

1) You can choose the hair to suit your outfit/mood/plans, rather than having to do the opposite.
2) You will never have a bad hair day
3) If you want to change the colour of your hair, it's not damaging or expensive (or time consuming) to do so.
4) You can confuse people by changing hair secretly at a party
5) It's quicker to shower
6) You hair won't get tangled while sleeping
7) A wig keeps you nice and warm when it's cool
8) You are not defined by your hair
9) You can play different roles
10) You can try different styles and colours than you would usually be afraid to
11) It gives you a fresh perspective of what physical aesthetics really are, and what the value of hair really is.

James took these photos with our new camera that Jenny gave us:

The wig that used to be my cousin Evie's

...and her other one

The wig that the NZ government paid for (thanks!)

Cheapies from the US (everything there costs less)

Evie's again

I had the NZ one cut by a hairdresser as it was too similar to the other. 

Keep an eye out for more photos and eventually video - I promise they won't all be about hair!

Sharing the journey

...as if, you have a right to think, I haven't done that enough. This expose has been sitting in almost every coffee shop in Wellington for a few months now. Sorry for not posting it sooner.