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 8, 2012 | Today's to do list

Don’t vomit

Poop

Walk up 3 flights of stairs

Reply to 3 emails

Take all my medicine. 

Journal

Find some sunshine 

Let everyone know I’m okay

Talk to dad

Well wishes to Poppa

Laugh 

Start spelling words wright=  practice.

Read the news

Eat chocolate 

Shower

Right(that’s wrong) a list of things I am thankful for

Celebrate being alive

Seriously, B, poop already. 

(Sorry for these not being nice inspirational goals)

January 8, 2013 | Still Alive!

We had to move. 

And the past few weeks have been a shaky walk to find my feet again. It all happened so fast. The diagnosis, the shock, the decision, booking flights, my sober 21st birthday, going back to our beloved town of Moscow one last time, fainting, forgetting my meds, hundreds of friends coming out on our 'official' last night wearing crazy wigs to send us off. 

It was a tear-stained, messy, joyful night.

The next day - the last day - was ours alone, to relish in the joys we had shared, alone and together, with our hometown over the past three years. Coffee at One World, cheesecake at Bucers, tacos at Casa, gyros at Mikeys, dinner at the restaurant we went on our first date at (we were full!) before watching 'It's a Wonderful Life" at the town's gorgeous, historic cinema. 

We wandered home one last time, hand in hand, new snow falling gently on the bare winter trees lining the streets. We walked up the bright orange painted stairs and all their excitement for our new life together. We crawled into our bed one last time. I'm not sure we even entered our office, or went out onto the roof/balcony, spaces that had contained our plans and dreams, for it was in darkness the next morning we left. 

Under the watchful eye of the flight attendants, we made the long journey to Wellington, New Zealand. The capital city was shrouded in fog when we arrived, adding to our daze (okay, I'm especially dazed) as we wound up to our home for the next while on narrow streets lined by twisting Pohutukawa.  

When the fog lifted, we saw Wellington. From the top of Cluny ave, the sun rises in arrays of reds and oranges and purples over the Orogorongas to the East, journeys over the distant Rimutakas and Tararua ranges perched up the north of the sparkly harbour, and sets over the massive, rolling hills aptly called 'the Skyline'. 

We managed to go up to Taranaki, my homeland, for Christmas, staying in little cabins on the waterfront. What a heartwarming experience it was, to see my dad and his family after all this time...and all this. How wonderfully therapeutic is was to swim in the ocean on Christmas day. 

I’ve missed the incessant pokes and jabs and medication so much that I will begin IVF tomorrow. IVF - a concept I remember learning about in high school science and not blinking an eye to. It’s something that applies only to old women who have left things too late, right? 

It was a surprisingly easy decision to go ahead with the fertility treatment and embryo freezing. Not so long ago, both staunchly independent world travellers, we were would have laughed at such a concept as having children. So, our parents are about to become a grandparents of multiple cold, very well behaved grandchildren. We are currently accepting applications for godparent roles for each of them.

 ***

The sunshine of this sudden summertime and going for small walks are helping me build strength in this precious bit of time while I wait for radiation therapy to begin on Monday.

It’s funny…I actually can’t wait to begin. Of course, It’s no fun being in hospitals and they still get me down in their own strange way, and being in ‘the mask’ is claustrophobic and uncomfortable (breathing deeply and sending my mind to other places being my strategy), but I’m really excited about starting radiation. It feels like such a long wait since surgery, such a long time waiting around with life on hold for this treatment that now looms.

Life is good. 

January 9, 2013 | A Letter to James

I wrote this to you last night after heading down to bed. I hope you don’t mind me posting it here.

I woke this morning wanting to write to you and it was in my list the whole day. As always (yes, even when you are with me, if that’s not too strange to say), I can’t get you out of my mind. I keep thinking about how it will feel for you to drive in to Moscow and to wonder at the strange loss of the feeling of coming home, or to see all your friends that so clearly love you and to know that you must be kept apart from them by distance, money and all that stuff, and most of all, how it will feel to walk into 120 South Polk and see the remnants of our life strewn about there. The weight of what you are doing for us is unfathomable. It’s silent but for the wind down here in the den and I have little tears gathering at the corners of my eyes at these imaginings.

My guilt is sometimes, just sometimes, overwhelming. Guilt for turning not only my own but other peoples lives upside down. Guilt for acting differently after surgery and as I waited for treatment to begin. For not being strong enough or loving enough. This is my own choice to feel this guilt, and you know that I refuse to dwell on things that can’t or couldn’t be changed. I choose to feel it because I know I could have been more loving and dynamic and brave over the last few weeks, and it only makes it worse that you too knew it, and was the only one to voice your belief in me…and I let you down. It’s funny, that’s been the hardest thing. Not the surgery, not the jabs, not the fear of death, I’m really not too worried about that stuff. It’s the fear of letting you down and of being a burden.

I’ve felt really great in the past few days. I’ve wondered if I should feel guilty for saying that, as it’s not something polite people say to others just after they have left. But as you know, ‘polite’ isn’t the first adjective I shoot for (there are much more exciting ones, like wondrous, phenomenal, sparkly or intrepid). Anyway, let’s just say it was since our breath-of-air escape into the mountains that I’ve felt good, that perhaps the fright in the night and the icy water woke me up a little. In the past few weeks I’ve taken the saying ‘you don’t know what you’ve got until it’s gone' (or compromised, or limited, etc.) to be a metaphor for life…. and in the meantime, was forgetting that it’s the goodies inside of life that go unappreciated. The little tears keep wanting to creep back as I think of the awful nights you spent with me in hospital, or tending to me when I could hardly walk, or even worse, putting up with me as I recovered from the ordeal physically before mentally.

Today I ran the Highbury Fling twice. The feeling was incredible, flying through that greenery and feeling my body strain up the hills before gasping that gorgeous clean air and dodging the twisting trees on the way down. I sat by Harriet by the fire and discussed her favorite books and how she gets them out of the library, and cooked a lovely meal for Karen and Carolyn with ma with Electric Guest on full volume. She and I hugged as I wandered down to bed tonight and as I hugged my wheatie-bag, amongst a chorus of sweet “goodnights” between everyone. And now I stare at your pile of clothes and can’t believe that you have traveled across the world for all this.

I can only hope that during this time away you will be able to understand that this here isn’t the life I’ve chosen either…that neither was necessarily Moscow. These things have happened and we’ve found ourselves amongst them, and learnt to adapt and enjoy them wholly along the way. No, the only life I’ve really chosen is the one with you. I may be looking forward to radiation on Monday and be happy being with family, but I loved our life we were and are creating and there is absolutely no way I will ever give up on it. Our dreaming brought us together and we must cherish our dreams always, wherever we are.

The wind is gusting at 140km/hour tonight, and I’m blowing you a kiss good night. I hope it’s carried right to you across the seas, and I love you for knowing what a kilometre is (thanks).

x, your B.

January 19, 2013 | Walking the Skyline

The nurse told me on the phone this morning, “take it easy today.” I didn’t tell mum or Guy that (I guess they'll find out soon), and without knowing they were unsure whether I should be joining them on the ‘Skyline walk,’ which is a hike that stretches for 13 kilometres along the hilltops that make up one horizon from our house.

We began climbing Mount Kaukau, a steep uphill with stunning views. My hands clasped on my abdomen, we made it to the top fine. There were a number of people up the top, some talking about how they were going all the way to Karori, a faraway suburbs. Some were older and some simply looked unfit, and so I said to mum, “If these people can do it, so can I!” “Sure, but they’re not recovering from an operation yesterday and in the middle of radiation,” was the response.

The procedure yesterday to retrieve the eggs was a lot worse than I had expected. I had thought I would just breeze in, hand them over and breeze out. Typical Wellington though, it was a cold morning and my hands were cold (okay, typical me.) They spent over half an hour just trying to find the right vein to put the sedative into (so I now have little pricks and bruises dotting my arms), and then the actual egg collecting was just as much painful as it was uncomfortable, even when sedated.

I waited today in a sunny little cemetery to be picked up after our walk, contemplating death as you do in gardens of the dead. I could help but notice all the eerie ‘reserved’ spots for people who wanted to be next to each other, and the things that people were remembered for. “Loving husband, father and grandfather” was the most common [male] remembrance. Wealth doesn’t matter when you’re gone, neither success. We all know this logically but it really hits home in a cemetery.

So I was sitting there on a bench thinking about the value of family when you’re gone. Just then, a young family came by with three yelling, misbehaved children whom they looked quite fed up with, and not bitterly, I couldn’t help but thinking about how people don’t quite realize that it’s lucky simply to be able to have children. I say this as three of the six eggs they got out yesterday have fertilized overnight and they are quite frank when they say “you’re lucky if you get more than one to succeed.” Many women undergo multiple rounds of IVF before success and in this case, we can only hope that our age helps the success rate so we can at least have something to freeze for a later date.

And so now I am back at home, which is beginning to feel a bit like home (although I still do consider Moscow home). I may be ambitious with trying to keep living, but I’ll be the first to admit it’s really hard to get started on online classes half a world away that I am already late in beginning. To write a blog and help with the housework, or start this class that I’m already behind in and feel distant from? I have to ask myself. I guess you can see which option won this time. I don’t know where time goes – and am hoping to have more time now that IVF is finished and it’s all in the hands of the embryologists. It’s so much better being able to attend real classes, something that in regularity we often forget to be grateful for and emit the occasional complaint about.

Week one of radiation is officially completed! It’s really not too bad. In fact, I have a lot of fun striding into the radiation treatment rooms, greeting the lovely receptionist lady with a smile (who always says “why hello, darling, just go on through Bethany”). The radiation nurses are incredible too, I feel that in some ways they are my friends (although perhaps that is due to my current relative lack of physical friends). I take my earrings out and lie down in the position on the bed I have come to know is aligned with the lasers, and wait while they do the position checks. “Perfect,” they say, and then leave the room. When they have left the room, on blasts the song of choice for the day in a feeble attempt to drown out the dying bumblebee sound of the radiation beams. After about six minutes stuck under the mask, I am free and can breathe properly again. I thank them, grab my earrings and phone and wander out, making sure to say goodbye to everyone on the way.

There are just 25 of these days to go, and I understand that things are going to get harder and my hair will conveniently fall out in patches, permanently, about a week before James returns. It’s nice there is a build up as it gives me time to develop my mental strength in the situations, so I can be stronger when the dreaded chemotherapy begins.

Alright, that’s it for now, thanks for listening to me ramble about this new, crazy life! 

Six months

"So are you in remission?"

"Yeah, pretty much," I have always replied, despite never hearing the word uttered to me at all. 

But I've never really believed my answer, either. 

"Remission," according to the great Wikipedia, is the "state of absence of disease activity in patients known to have a chronic illness that cannot be cured. It is commonly used to refer to absence of active cancer... when expected to manifest again in the future."

The average time it takes for an anaplastic ologidendroglioma to creep its way back into one's mind (sorry, brain) is five to thirteen years. So I've been told. 

On Wednesday night I had my six-months-post-treatement MRI. Being back in the tube was a surreal experience, forcing back memories I had shoved aside into the dark abyss of cancer memories. Yet it was also extremely hopeful; I knew it was gone. I lay there knowing that the past year or so has been an experience to never forget, yet not always remember. One to put in the past, yet inspire a bolder, more understanding future. 

In a couple of weeks I'll likely hear my oncologist utter the R word, and I'll smile. It's just a safety word. A word that makes "we have no idea" sound medical. It's not coming back.

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.

What I already know

There are certain things we know consciously, and a whole lot more we know. The two can even conflict with one another at times -

I know the tumour I had typically comes back in five to twelve years, and that I am never technically healed from cancer, living in an unknown state of remission.

However, I also know that odds can be defied, that the power of the human spirit can conquer physical ailments and disease.

As I fell apart in front of him, James gently reminded me last night that I have recently been letting the burden of expecting to live a normal successful life weigh me down.

With all the love I have ever seen in a human’s eyes (it humbles me), he noted that I’ve been planning for a ‘regular’ career path. “Think about what you want to do in your life, and take action,” he said.

“If, in five years, the tumour comes back, do you want to have lived 100% of your life by that point, or just 5%? It’s not that I think it will, but you have to keep it in your mind as a possibility. You can’t just live in denial of it.”

It was my lover who has been the spark in reminding me what I already knew, but had forgotten. He reminded me that life is ephemeral; we never know how long we have, or which precious moments we may miss the joy of fully experiencing.

It’s an interesting dichotomy, choosing between believing I will conquer this thing and harnessing my confidence in the future to do so, or letting cancer be a reminder of the impermanence of life.

On one hand, the power of positive imagery is certainly something I know, albeit subconsciously a lot of the time. Mental projections of a long and happy future surely can’t be bad, right...?

That’s what I’ve thought, up until today. However I’ve noticed that because of this belief, I’ve been slipping into a thought pattern that is afraid, that plans and waits, that thinks getting a typical journalist’s newsroom job could be a ‘good starting place’ for a career.

The other option may not sound so positive, in fact, it may seem mildly depressing. However when I feel it - feel the affect it has on me - it feels exciting and healing.

If you only had five years, what would you do differently?

This question has been turning over in my mind today, thanks to the timely reminder I had last night.

I would love, give, write, forgive, and be grateful. I would take more risks. I wouldn’t work in a low-paying, high stress job - financially, I would work to build assets for James and I (and our family) rather than rely on an income. I would share what I have learned. I would live more in the present moment, because that is the only life I have left.  

Interestingly, I picked up an old diary of mine this morning as I woke with the light streaming in. In it was written a New Year’s resolution from a couple of years ago -

To love unboundedly

Live consciously

Breathe slowly

Feel passionately

Know deeply

Listen wholeheartedly

Move freely

Speak sincerely

Laugh wholly

Grow constantly

…this I had forgotten. It’s so easy to forget.

It’s time to remember the fragility of time, the value of each moment, and forget fear.  

The year that was

I saw my brain today. It gave me a fright, and left me feeling a bit shaken.

There it was - sitting on the screen of Dr Hamilton’s computer for my follow-up appointment. And the star of the images... that big, glowing white ball.  

I hate that thing.

It is one year exactly since I called my mum telling her I had a headache and my eyesight was a bit blurry. November 18. It’s about time I write something.

Survivors should be happy, right? Celebrating every single breath. And survivors should be strong, Fearless.

These feelings weigh on me when I realize I’m often afraid, a little cynical (am trying not to be!) and get frustrated about not knowing what I’m doing with my life.

For after all, I was reminded today that anaplastic oligondendroglioma’s typically come back within 5 to 13 years.

I just don’t want to know this.

I came home today and sat down. To be honest, I felt a bit bewildered. I walked like a zombie to the kitchen (okay it’s only two metres away from the ‘lounge’) and had a few big bowls of cereal in lieu of the healthy, cancer-kicking dinner I had planned in my mind. 

Now my head pounds. Yes, it had sugar in it, which I haven’t had in almost a year. It gives me an awful headache now. It may well be all in my mind (pun not intended), but can feel the pain emanating from my right frontal lobe.

Now I’m wondering what the issue really is. Is my life not wonderful, and so privileged? Yes, I know it is. 

I think I feel guilty. I feel guilty for people admiring me, thinking I’ve dealt with this all so well, “oh, I don’t know how you’ve done it,” “you’re so positive, strong,” etcetera. 

"Misleading the public" is what they call it in journalism.

It’s been a big year.

(Writing that last sentence just brought tears to my eyes.)