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! 

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 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!

March 26, 2013 | The Perfect Sunset

James and I spent the last week staying in a little bach[1] on the northern shores of lake Taupo. “This is the life,” George says to us honestly, as the three of us walked barefoot up the track that leads from the sandy beach to the house, with dripping togs[2] and once-bright 90’s patterned towels draped around our necks. “Get home, swim, have a hot shower, cook dinner, read, sleep…this is my life,” the man who introduced us back when the world was a different place said to us.

Kiwi George was working with a logging company in northern Idaho called Northwest Management back in 2011. Alone in a new world, 27 and free to roam, the adventurer decided that the hotel provided by the company was too…dull for him. One evening he found himself telling this to a young man he met at a party. Funnily enough, this young man was a traveler also, and had been taken in by many a person in his gallivanting days. And so, he offered to have George stay on his futon.

“James, do you remember when I was staying at your place and the only groceries I contributed was a 24-pack of Budweiser[3] cans, and a pack of rice crackers?” James laughed at Georges question as we were heading down to the beach the next evening. I quickly figured that the single, stale rice cracker that James kept in his cupboard and was going to keep it for years for sentimentality was the last of George’s household contribution.  He must have missed George when he took off to Europe – took off to work in various odd jobs, blow his savings, live in tiny apartments in France and eventually have to return. I chuckled, it was clear that these two guys like something about each other, despite their nonchalant masculine exteriors and being close to opposite in their mannerisms.

George is back in the land of the long white cloud,[4] now, and each night when he arrived home from work, James and I would have dinner all prepared and in the oven, and the three of us wandered down to the lake and swam the 200 meters[5] to the buoy as the sun set. Each night the sky was painted different colors; from bruised, blue-grey skies as we ducked through choppy swell, to the perfect pink skies that framed the halo of the sun on the other side of the distant hills in flat, crystal clear waters. We felt cold, tired, hungry and exhilarated. Bare feet up the path and we arrived to the smells of dinner oozing from the oven walls, and we cracked open the wine and dug in.

I can’t express how lucky I feel to have had these few weeks of normalcy between treatments. Even in the few days after radiation finished, while the fatigue still plagued me physically, I felt enthusiastic and like all this cancer stuff was just a dream. A simple thing like not having to go into the hospital each day made me feel like I was no longer a patient. As the days wore on, the hospital grew more and more distant until it was simply a half-bald head in the mirror.

I stand at the starting line of chemotherapy with swimmers legs and a singing heart. I’ve never been so determined to over-perform in something – and I’ve had my fair share of that pursuit in the past. The four-week gap was supposed to be physical recovery time, but in a way it’s also been a time of spiritual strengthening. I realize that things as they are at the moment aren't everything, only a bump in the road, and I am infinitely lucky to be in the land of the long white cloud and silent, saturated skies.

---

[1] A small holiday cabin near a body of water, generally the ocean

[2] Swimsuit

[3] A cheap, crappy U.S. beer

[4] The Maori term for New Zealand

[5] Or, ‘metres’

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.