January 21, 2013 | Wouldn't Change a Thing

If you could go back and change something, what would it be?

The question has been meandering around my mind recently. Would I have not used my cell phone in Togo? Would I have not gone for the summer in Togo when the tumor began growing? Perhaps that would spare this pain. Going even further, would I not have gone to the US at all? Perhaps if I had stayed home I would have been healthier and not exposed to whatever environmental trigger caused it to begin. Would I have gone into the hospital at the first headache? Would I eat more anti-carcinogenic foods, or stringently follow books on cancer prevention?

I wouldn’t.

Cancer sucks. It’s treatment sucks. Being rendered infertile sucks. But to be honest, clichés aside, I do believe the whole thing is an invaluable lesson. Nothing else would have forced me to move back to New Zealand for a year or caused me to slow down and contemplate what really matters in life. Before, I may have been reading books about slowing down and the global slow movement, but living slowly was simply a sideline activity in a busy, driven life. Since, I’ve never been so aware of the love and support that surrounds James and me, and my cynicism has been gently replaced by a faith and hope in humanity.

I have always struggled with vulnerability (this trait inherited genetically). My lecturer in a Personal and Exploratory Writing course last semester would discuss with me about why I put up walls of armour in life and in writing, and tend to try to be and appear strong and avoid conflict both within and inter-personally. It’s true, I’m no good at fighting, and usually don’t see the point in conflict. It’s also true that for the past three years I probably appeared as some strong young woman out conquering the world, immune to fear and loneliness.

World traveling and skydiving and all those things don’t make a person brave. They do help one develop bravery, and for something such as bravery to intentionally be developed there must be a perceived lack. Perhaps I was trying to prove something. Perhaps I was trying to be something I wasn’t. Perhaps I had forgotten what life is all about, got caught up in the race for success and saving the world without stopping to take a deep breath…perhaps. Don’t get me wrong, my old life was absolutely wonderful and I don’t ever want to deny that. But in this new chapter, I am grateful to take part in the lower levels of life…in the pain that millions are suffering each day that I never truly understood, in the despair that many women feel worldwide when unable to have children.

And there’s a lot more to learn. I don’t know what I will think looking back from within the jagged tracks of chemotherapy. Perhaps I will scoff at the idea of being grateful for the situation that cancer presents. In many ways, I have a long way to go. This is a journey I’m deeply grateful for, and profoundly thankful that I get to share it with the ones I love. Some people find the love of a God during illness, but I am now a student of the love of humanity…. and I wouldn’t change a thing.

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. 

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.)

Identity and learning

(I wrote this a couple of weeks ago - sorry I only am just getting around to posting it!)

  ...

I think I’m having an identity crisis.

Alton, a wonderful mentor and professor at the University of Idaho, asked me before we left Moscow what my main lesson had been over the three years. I told him with sureness, “I have learned to love.”

Despite love being something I’ve since found that you can’t “know” once and for all and you can never fully learn it, it’s probably a fair statement considering the anti-love, anti-commitment girl that started at the university in January 2010.

I took a big exam this a while ago. I didn’t do very well. In fact, I left before anyone else, leaving multiple blank answers. It was something I thought I was “good at” – general knowledge, writing, basic grammar and numeracy, and last but not least, exams. I thought that stuff came naturally.

I thought journalism stuff comes naturally, that’s one of the main reasons I’m doing it.

In Idaho I studied Anthropology and International Studies. Of course, despite all that training, I didn’t come away telling Alton, “I learned to be an anthropologist.” No, I learned about love.

What on earth am I learning about now? I wonder, as I lie on our bed with a headache and barely energy to type.

Perhaps it is to learn. That’s what I’ve been wondering today anyway.  “Learning to learn” was the catch-phrase when I went to school. I should have taken that more seriously.

Now, faced with my own inadequacies, I see that I can’t, and don’t want to, just float on by doing things last minute and still getting “good grades” (quotation marks implying I don’t know what the worth of those really were in the end). I want to, and need to, truly learn things. Repeat. Visualise. Discuss. Articulate. Question. Repeat.

Or perhaps it is to say sorry. That’s something I’ve always struggled with, that humility thing. I may say it was the cancer that has “brought me to my knees,” but don’t believe it.

The cancer was only a trigger. It was a situation I found myself in that required me to rely on others, and that made me act out of character and have to apologise for it. I didn’t want it to be an excuse, ever.

I guess time will tell what I’m learning from this stage of life. I hope, and am sure; it’s not just journalism. 

Walking up the hill

Did I tell you how liberating it was when I stopped in my tracks and realized last week I was perfectly okay to pause and catch my breath halfway up a hill?

I suppose I had thought that because I was choosing to carry on as normal, my body should be able to perform as normal.

"How on earth does a poison physiologically make it more difficult to walk up a hill?" I asked in frustration.

Ready to launch an enquiry on the World Wide Web, I was gently reminded it was simply that my blood has less oxygen to carry around, hence, less energy. The chemo wasn’t, as I had momentarily imagined, eating away at my muscles.

***

Yesterday when I was walking home, a group of young adults about my age powered past me on the eight-sets-of-steps hill between downtown and the road above. They were all carrying bulging grocery bags.

A debate began in my mind – another chapter in the ceaseless battle between self-pity and acceptance. It just felt so blatantly in my face this time, watching their behinds bound up the steps in front like.

It was the girl lagging behind that helped win the battle for acceptance. 

Glancing back, I saw her with a nonchalant smile on her face, taking her time, and unhurried by the fact that her friends were up ahead. I smiled at her and said, “they’ve gone and left you behind, huh?”

She didn’t seem to mind.

The thought, “she doesn’t have any excuses like I do” didn’t last long as I realized just how ludicrous it was. Why should she need one? Why do we need excuses? Why do I need to explain myself taking my time walking up a hill?

You could say chemo is an uphill battle and some would try to differ – yes, I know it gets worse and worse. But with every challenge it presents I learn something about myself I wouldn’t have learnt otherwise, and that’s what I call an uphill battle.

Excuses, Excuses...

Look what I just found!

"People who have had chemo and have problems with thinking, memory, or concentration often call it chemo brain or chemo-fog. Some people report having these symptoms even before they start treatment. Others report it even though they haven’t had chemo." - The American Cancer Society

So I admit I was out searching for academic verification of chemotherapy making me more emotional when I stumbled upon this alleged "chemo-fog". Who would have thought?!

No seriously though, does this stuff not make people more emotional? It's something I would have scoffed at, but now I'm in it, I'm starting to wonder. It's been amazing, embarrassing and annoying, this 'being emotional' thing. It's like it's a roller-coaster that I can't get off. 

Today we were at the table discussing whether James and I will move out, and mid-conversation I had the overwhelming sense that the world wasn't appreciating James and seeing how incredible he is! What to do when one has a sudden rush of admiring and loving emotion for a person? Naturally, one bursts into tears of course. 

Even writing that almost brings tears to my eyes, as it reminds me of just how lucky I am to have such a capable, wise, creative and inspiring man by my side and I just can't handle it, I just want to tell the world!

That's ridiculous right??

Oh, who cares. Bring on the fog and all its flying colors of emotion and love and messiness!

Triptych

We are lined up in a classroom. The teacher has given us an assignment; everyone is nervous. I peek over at my neighbor – she is concentrating, determined. The assignment is given. We are to design a poster for people with cancer, in an effort to ‘communicate’ with them. No one acts surprised, as if this assignment is completely ordinary. I am filled with nervous, excited responsibility. “I’ve got this,” I think to myself. “Cancer is my thing. I understand it more than anyone in this room.” The students get to work – oddly, it is a competitive assignment and each person is pitted against each other in order to create the best poster.

I get to work. Cutting, coloring, drawing (no computers here), I can’t seem to get it to look good. Stress builds. I have to do this. The clock ticks rapidly - students glance over at each other’s work. Time is almost up…

Now it’s time for presentations. We have to stand up and explain why we made our posters the way we did. I feel distraught – mine isn’t nearly as good as many of the others. Students take turns to stand, presenting posters that say things like “get well soon” with pictures of flowers, and various other slogans and smiley-faces you might see in a hospital children’s ward. They talk about people with cancer like they are sad, dying, lonely, in need of comfort.

As my turn creeps closer, my confidence and frustration build. I know I have to say something. The final polite applause ends and I apprehensively stand. I hold my poster low, and begin a speech, addressing the students directly. Heads turn, eyes are pulled to my confident, impassioned voice. “We’re not victims, please don’t treat us like we are,” I say. “Each one of you has created something that calls for pity; pity for patients that are hopeless and hanging on to each commiserative word they can get hold of.” I look around apprehensively – they are still intently listening. “I have created something that, although it may not look perfect, encourages people – yes, I say people, not patients – to band together in camaraderie with everyone around them. It’s not an uncommon thing you know, cancer, no matter how dark or tragic it may seem to you. Hopefully you’ll never see it but our hospitals are full of people lining out the door for treatment. You always hear about people who die from cancer, but how often do you hear from the people who are confidently living with it? Please, don’t make us victims.”

By this point tears have formed in the corners of my eyes, and my heart is pounding. For a moment there is silence. Suddenly, the room erupts in cheers and enthused clapping. I’m shocked. But my poster is awful and ugly! I don’t deserve this! I look guiltily down at my poster, and notice with shock that it is completely filled with color.  

This was when I woke yesterday morning. I hadn’t yet had dreams about having cancer, but I suppose my psyche has finally caught onto it.

***

Insecurities

I am going to try and express my insecurities that should not exist.

They should not exist yet they make my jaw ache for no reason, and my eyes unnecessarily wet.

My life now is hanging out with my mum in a beautiful house in a beautiful country. Each day I educate myself, do homework, housework, errands, and stay strong to take the pills that are poisoning my body.

They have not weakened my body too much, but perhaps they have weakened my spirit.

I am bald. The pills I am taking make my scars show up. My body is no longer able to fight off a simple scratch before it protrudes like an ugly Rudolf-scab. In the daytime it’s okay – I can put on a wig, makeup, clothes…but at night it comes off and I am once again a “patient”. I put on a little hat but it doesn’t hide the baldness.

Sometimes the girl in the mirror at night whispers to me doubts. I’m trying to work out if that’s okay. I think it is…although I’m told it’s not. I suppose it’s felt more pronounced now that James is off at work and has what they call "a life."

It’s a tough thing in relationships, when the balance is off. What do I want, reassurance?

Well, I’ve given that question some thought, that question that was posed to me with cynicism and irritation… I guess I do. There are situations when I need reassurance, more than I did before anyway. I’m no longer that powerful, world-conquering, always-successful traveler. Now, I do laundry and dishes and cleaning, interspersed with homework and my own quiet learning pursuits. I’m not out in town, all dressed up and at my best. I’m not a ‘professional,’ not even a student. I’m not a lot of things.

[written about six days ago]

***

On Friday night we went out dancing. James and a few of his workmates, my gorgeous friend Anneke and I danced ridiculously and for hours to eighties music at the Bangalore Polo Club in downtown Wellington. When I told my dad this he laughed, sounding slightly concerned but slightly relieved; “Oh! That’s strange to hear, while I’m here thinking that you are in misery, you’re out partying!”

It’s a funny feeling being out, dressed nicely, dancing well with a gorgeous wig on, knowing that cancer is my own little secret and that hardly anyone else in a room knows.

The clock strikes midnight.

In the middle of the dance floor to a particularly victorious Queen song, I whip off my long, brunette wig. A bouncer gave me a strange, disappointed look. I can feel people’s eyes on my bare head. The long, fake strands wave above me, triumphant.

When it is safely back on, James’s boss's boss comes over to me and whispers, “You look beautiful with and without the wig.” I smile at him. “Thanks!” I say, beaming. “Not many people have the skill of being able to take their hair off!” I later declare to James - I'm not sure how he feels about my newfound skill in public, but he rolls with it.

***

Is being on chemo great? No. Well, yes, sometimes. Is it miserable? No. Well, yes, sometimes.