Paw Paw Salad

Of recurrence and risk.

In his New York Times article ‘Blowing Up’, Malcolm Gladwell examines the approaches of two famous Wall Street money managers. The first, Victor Niederhoffer, is a fiercely competitive and hugely energetic man who became fantastically wealthy making daring investments in stocks which he picked as winners. The other, Nassim Taleb – who had seen great misfortune in his life, including a rare cancer – took a previously unheard of approach predicated on the inevitability, at some point, of disaster. He made trades in a way that would lead to ongoing losses when the market behaved normally, but result an enormous win if it took a catastrophic downturn. He stuck to this strategy with increasingly miserable determination as his losses mounted. Then Wall Street crashed. He became a fabulously wealthy investment guru. Neiderhoffer had to sell his fund and his mansions and borrow money from his children.

Gladwell reflects on Taleb’s past - the way that he knew, on a gut level, that none of us are shielded from the forces of “sheer dumb luck” - and commented as follows about his strategy of putting money on the worst outcome:

“This kind of caution does not seem heroic, of course. It seems like the joyless prudence of the accountant and the Sunday school teacher. The truth is that we are drawn to the Niederhoffers of this world because we are all, at heart, like Neiderhoffer: we associate the willingness to risk great failure – and the ability to climb back from catastrophe – with courage. But in this we are wrong... There is more courage and heroism in defying the human impulse, in taking the purposeful and painful steps to prepare for the unimaginable.” 

My husband and I met at university and have effectively grown up together. Until now, we have tried to approach risk with a Neiderhoffer spirit. We have moved to a variety of places, including an overseas posting which commenced shortly before the birth of our first child. We have tried different jobs, and I returned to study while having children and changed careers entirely. We took the kids out of school during 2010 and camped our way around Australia for several months. When an opportunity came up for John in Darwin, I had real misgivings. As well as the pain involved in moving so far from loved ones, making such a major change at that point in our lives, with children approaching high school, felt dauntingly risky. But John really wanted to take the job. We were not a couple to shy from a spot of risk, I told myself. We were Neiderhoffers, damn it! So we headed off – straight into our very own Wall Street crash.

My surgeon reckons that there is about a 20% chance that my cancer will metastasize. Despite all the pink ribbons, there is still no cure for metastatic breast cancer. On some days I feel hugely positive about my chances. On others, the words “one in five” toll in my head and I wonder how it is possible to keep functioning with such a level of fear. On days like this I feel like I have a revolver barrel spinning near my temple in a game of cosmic Russian Roulette - and the barrel is missing one chamber.

While I was undergoing chemotherapy in Sydney, there was a period during which I became obsessed with pinning down my odds. I felt that I needed to know for certain if my surgeon’s statistical judgment was on the money. A driving force behind my (ultimately futile) quest was that I was trying to figure out if we should pull out all stops to return ‘Down South’, closer to our families and friends. Terrified by the prospect of finding ourselves ‘marooned’ in Darwin after an unlucky Russian Roulette spin, I was in a Taleb headspace. The smart thing, I thought, was to pull out as soon as possible and then hunker down indefinitely, close to support and prepared for the worst. I told John that this was my view, and started making preparations - both mental and practical - that anticipated our return.

Shortly after I went back to Darwin, a job was advertised in Sydney that John was well placed to apply for. Jobs don’t come up often in his field. By that point the kids were thoroughly settled into their new lives. They had a school they liked, a Scout troop, trumpet and electric guitar teachers, favourite bike rides, and most importantly, a tight group of friends with whom they socialised on several days of most weeks. They could provide passionate descriptions of what they loved about living in a small, nature-drenched city. They were at one in being adamant that they wanted to stay, and John and I loved seeing them so happy – it seemed nothing short of miraculous considering the time we’d been through. John, meanwhile, was beyond exhausted. When I got back to town he was flat out working to a deadline, and beaten down by our horrific year. Everything in him rebelled against the idea of another huge change. Simply writing a job application felt like it could be the straw that broke his poor, tense back. He asked if I would be OK with the idea of letting the opportunity pass by. Despite the risks involved in staying, he didn’t want to move again after the year we’d just had. If the worst happened, he said, we would deal with it at the time, as best we could. And – while he was almost as scared as I was about the future – he didn’t want us to approach life bracing for disaster. Disaster would feel like disaster, he argued, whether we had tried to prepare for it or not.

I guess that’s the thing. There isn’t much of a potential pay-off from this kind of Wall Street crash. Can one, really, “prepare for the unimaginable” in these circumstances? And what can be gained by attempting to do so? If disaster befalls me, would a sense of grim satisfaction at having gambled on that outcome outweigh the cost of having lived in fear of the worst? And even if there is an ultimate ‘payoff’, is that what matters most?

John didn’t apply for the job. For the moment, we’re staying here. I’m not sure for how long. But for now, he and I are hoping for time to re-build. To explore. To show our sons Jim Jim Falls and the Stone Country Festival. I know that this may ultimately seem foolhardy if the odds don’t go our way, and that Malcolm Gladwell may see it as the less courageous choice. But I guess that - despite our own recent Wall Street Crash - we're just not ready to abandon our inner Neiderhoffers.

Life in the slow lane.

As a young girl, I was a good swimmer.Tall and broad-shouldered, I became the girls’ swimming captain of my primary school and local district. My coach wanted me to take it further, but I quickly became bored with training sessions and left the squad. As an adult I’ve been a sporadic lap swimmer, but could keep up a strong breaststroke for as long as I wanted to whenever I gave it a go.

Now I’m on orders to swim. Like many women with breast cancer, I’ve had lymph nodes removed from my armpit. This tends to cause shoulder tightness, and creates a risk of lymphoedema in the arm, an extremely unpleasant condition in which lymphatic fluid accumulates and causes swelling. My OT has told me that swimming will improve ease of movement and will stimulate my lymphatic system, encouraging the remaining nodes to take on an extra workload.

So I dig out my board shorts, tie a supportive bikini top over my reconstructed breast (wondering nervously how swimming will feel with an implant), pull on a rashie vest and head to a place that I’ve been wanting to visit. Nightcliff Pool is situated near the edge of a cliff overlooking the Beagle Gulf, which separates Darwin from the Tiwi Islands. It is surrounded by palm trees, and their fronds toss wildly in the hot Wet Season winds as I arrive. Gazing out to sea, I feel like I’m about to swim at the very top of the continent.

Sliding into an empty lane, I do a lap of breaststroke, then one of freestyle. My shoulder feels stiff, and seems to click a little while pulling through water. The scar under the implant is sore. I feel like I’m swimming so slowly that I’m barely moving at all. I do one more lap of breaststroke, one more of freestyle. I try to keep my kicks steady without worrying about motion, focusing only on keeping afloat. Since diagnosis, it seems that every bloody thing is a metaphor.

After a paltry four laps my shoulder is tired. An elderly woman says that my lane looks like the right one for her, and I suppress the urge to explain myself to a stranger. I try to pull myself up onto the edge of pool, but my shoulder won’t allow it. How can this be me? I duck dive under ropes to reach the ladder, and glance at the clock as I climb out. I have been exercising for less than ten minutes. The drive to get here took longer than my swim.

Feeling embarrassed at the prospect of walking out past the chatty pool attendant so soon after arriving, I sit down to dry out in the sun. A man is running a swimming class for preschoolers. He is encouraging a nervous little boy to rest on top of his arms and be dragged through the water, while putting his face in for a few seconds. Gathering his courage, the boy lies on the outstretched arms and tentatively dips his goggles as he is swished along. The beaming instructor lifts him gently onto the side and raises his hand for a high five saying, “Who’s the star, hey? Who’s the star?”. And for the umpteenth time since this all began my eyes suddenly fill with tears.

[With thanks to Jessica Stanley for the lovely photo!].

Bombed!

Beside every footpath in Darwin at the moment, frangipanis lie in the mud. This strikes me as a visual metaphor for my year in 2011.

 

I proposed yesterday afternoon that my husband and sons should accompany me to the Northern Territory Football League grand final. The Tiwi Bombers Aussie Rules team (who hail from indigenous communities on Bathurst and Melville Islands, known collectively as the Tiwi Islands, about two hours by ferry from Darwin) had a shot at their first premiership. It didn’t take much arm-twisting to convince the guys that it would be fun to see if they could pull it off. Storm clouds roiled overhead and we were dumped on by a quick, intense downpour shortly before the game began. We are now local enough to take such things in our soggy stride.

After being behind for much of the game, the Bombers had a brilliant last quarter, and when the siren blew the mellow tones of their club song 'Japparika' (by theTiwi band B2M – I presume this is a reference to Bathurst and Melville) wafted around the stadium.

01 Japparika (Tiwi Theme Song) 1

And I sat there in my squelchy thongs, eating horrible stadium food with my blokes, cheering surreptitiously (we somehow managed to sit in Nightcliff fan territory), and felt blessedly normal for a while. As a final benediction, I was pooed on by a low-flying bat. Strange as it may sound, such moments are precious.

 

Of self-image and sandwiches.

During the early weeks of my cancer treatment, John and I decided that it was time for our sons to start making their own school lunches.They were aged 8 and 10 at that stage, and this seemed to be one task that they could easily lift from John's full-time-working, suddenly-solo-parenting shoulders. On a visit to Darwin between chemotherapy treatments I drew up a list of foods sorted into food groups, with suggestions about how to include a healthy variety of choices in each day's lunch, and stuck it on the fridge. After two evenings of coaching the lads were able to complete the task independently, and seemed keen to continue doing so. They headed off each morning with delightful, nutritious meals in their backpacks, and I felt pleased to have eased John's daily load just a little before returning 'Down South'.

When I came back at the end of treatment, the novelty had worn off and my fridge chart was nowhere to be seen. The boys were well used to making their lunches, but now liked to do it as their last task before walking to school rather than the evening beforehand. Heartwarming food combinations (hardboiled eggs! tins of tuna! baked beans! carrots! cherry tomatoes!) had given way to the most basic. But I felt little urge to intervene. Watching Francis throw three Vegemite sandwiches (on wholemeal bread, at least) and a token banana into his lunch box last Friday, I found myself thinking, "Oh well, a Vegemite sandwich and a piece of fruit was my standard lunch, and I..."

Turned out OK. That was the end of the phrase that shuddered to a halt in my mind.

A particularly challenging aspect of serious illness is the way that it can shatter your self-image. I had always taken my physical robustness for granted. I took a generally sensible (though pretty relaxed) approach to eating and exercise, and most definitely regarded myself as healthy. But being diagnosed with cancer at the age of 41 unequivocally does not involve 'turning out OK.'

I have never asked "why me?", in the sense of wondering why I was 'chosen' to get breast cancer. I don't believe I was chosen, in any metaphysical sense. How horrifying for me to think otherwise, after all. But I have wondered why I got breast cancer in the sense of wanting to know what factors contributed to its development. If I could spread the word, clue other women in to my mistakes, explain why I didn't (despite all previous appearances to the contrary) 'turn out OK", then at least I could feel that something useful could result from this horrible turn of events. I'm sure Vegemite sandwiches were blameless, but what about my early menarche? Enjoyment of a drink? Decade on the Pill? Guilty enthusiasm for Diet Coke? My history was very ordinary and shared with countless women who (thankfully) will never develop breast cancer. My doctors just say I was unlucky.I long for more research into the causes of this cancer. But for the moment, perhaps a fuller appreciation of the degree to which our fortunes are governed by dumb, fragile luck is one of the few 'lessons' I can draw from all this. And that seems less appetising than the contents of the dreariest lunch box.

 

Monsoon.

Darwin has just been downgraded from a 'Cyclone Warning' that led to a day off school for the boys. As a storm roared its way over our house yesterday afternoon, my 11 year old son reflected that he has come to enjoy a proper wet season deluge. I acknowledged that I felt the same way. I like to keep the verandah-facing windows open, to best enjoy the defeaningness of it. This is no mere 'rain'. It is surely drawn to earth by a force stronger than gravity.

Standing on the verandah this morning, the wall of falling water made me feel like I was in a cubby house, and the palm trees looked like dancers tossing their skirts.

And that was when things were just getting started, before the verandah became too rainswept to stand on. The doors inside our house have hooks on the back, so you can prevent them slamming shut when the wet season winds rush through. Time to hook back some doors, make a cuppa, turn off the drowned-out radio and enjoy the show.

Thwack!

I have decided to use pseudonyms for the other members of my family on this blog. I was once told that there are only two degrees of separation in Darwin. This city is probably so small as to make efforts at anonymity virtually pointless. But for whatever it’s worth, I’ll call my fellas by their middle names – my husband will be 'John', our 11 year old son 'Francis' and our 9 year old 'Scott' (named for their two grandfathers).

Last Saturday, I found myself at home alone with Scott. As is typical during the wet season, the day was overpoweringly humid. After he had played on the computer for a while, I suggested that we do something – play a game, perhaps. No, he said, he’d rather go on a bike ride. My suggestion that the humidity might make this unpleasant at 11am was dismissed, so – determined not to let the side down and to start re-establishing my rep as a fun, active mother - I agreed.

When you’re trying to re-build your life after a year like the one I’ve just had, the smallest task can seem complicated. No simple grabbing-bike-and-going for me, at least on my first attempt. I needed to get my helmet from the store room – where on earth was my key? Where did we keep the pump? What should I wear to: (a) give maximum comfort to my re-configured body; (b) protect against the sun (especially important due to my risk of lymphoedema); and (c) allow for the stickiness factor? Where would we go, in this town I was still getting to know? A map needed to be consulted. There was barely concealed sighing, and more than a touch of eye rolling, during all this faffing about. I could sympathise. I was finding it annoying myself.

Eventually we got underway, headed for Nightcliff Jetty in the hope that the ice cream van which frequents the spot had set up for the day. The route took us along bike paths that skirted the Jingili Water Gardens and then wove between palm trees along the Nightcliff foreshore. Scott’s speed had increased since our last ride together, and he kept a brisk pace a fair way in the lead. I was heartened to find that my body felt strong and my left arm (which had been aching, leading me to worry about lymphoedema) was untroubled. It felt great to see my little’un powering ahead of me, his long metal-head hair bouncing under his bike helmet, the brilliantly blue water of the Beagle Gulf shimmering alongside. As I pushed along I wrote a blog entry in my head about reclaiming my body while bonding with my child. Goodness, but it was going to be uplifting!

When we reached Nightcliff Jetty, the heat was punishing and no ice cream van was in sight. We rode to the nearby swimming pool and bought ice creams there, which we shovelled in while sheltering as best we could under a palm tree. The sweltering ride home drained us both. On reaching our front gate, I commented that we should keep the weather in mind when timing such ventures in the wet season, but that it had nevertheless been nice to have a ride. “No, it wasn’t!” was the blunt reply. My imaginary blog post was starting to lose its shine.

Desperate for relief, we stripped off extraneous items of clothing and flung ourselves into the pool. This was another significant moment – the first time that I had swum since starting treatment. First there had been surgical wounds to recover from, then paranoia about infections during chemotherapy, and finally a large expanse of radiation burns that had needed to heal. The pool behind our much loved, box-on-stilts Darwin house is a lovely one, and an involuntary gasp of pleasure burst forth as I broke the surface after plunging in. “What are you making that noise for?” Scott asked, to which I mumbled something about it being nice to be back in the water.

A while later, Scott and I were taking swings at each other with long, inflatable mallets while balancing on large pool toys. Tiring of this game, Scott got out of the water and took a running dive through the centre of a blow-up ring floating on the other side of the pool. “Why don’t you do things like that?”, he asked. The note of disdain was too much for me. “Scott,” I said, “I've just had eight months of cancer treatment that involved three surgeries, six rounds of chemotherapy, and radiation that left burns all over my chest. You will notice that I am currently sitting on an inflatable crocodile swinging a mallet. All in all, I think I’m doing pretty well.” “Yeah,” he replied dubiously, nose wrinkled, “but still....”

When it comes to my sons – particularly the younger - I sometimes wonder if I’ve made cancer look too easy. But when it comes to your kids, I guess that’s what you try to do. Nine year olds are meant to be blind to their mothers’ struggles, un-wowed by their small triumphs. Better that than paralysed with fear. So for now I’ll thwack my lad with an inflatable mallet, fall off my crocodile and try to rejoice in the normality of his implacably wrinkled nose. While reminding myself that real life never makes a perfect blog post.

[Edited to add: I was tickled pink (no breast cancer-related pun intended) to find that this post had been 'featured' on the Breast Cancer Network of Australia's Online Network page today!! The BCNA has been an excellent resource for me, from the very start of this journey. It's lovely to now be meeting their members on-line!]

Forked in Darwin - Ep 1.

In the best-selling pregnancy guide 'What to Expect When You're Expecting' there is a paragraph that says something like: "Every time you lift a fork to lips, ask yourself: 'Is this the best forkful that I can be feeding my baby?' If not, PUT THE FORK DOWN!". I must confess that on reading this many moons ago I nearly picked the weighty tome off my pregnant belly and hurled it across the room, finding its condescending tone pretty forking annoying.

Having spent my life as an 'eat, drink and be merry' kind of gal - a woman who liked to start the day with strong coffee, finish it with red wine and order the most sinful dessert - I have found post-diagnosis eating quite a challenge. I am currently struggling with 'Fork Paranoia', feeling terrified that the tiniest indulgence in 'naughty' foods will lead to disaster. I guess it doesn't say very good things about me that I PUT THE FORK DOWN far more often for my own sake than I ever did for the sake of my unborn children, but there you go. I suspect (and hope) that I'll relax as time goes by, but I do want to make sure that most of my forks from this point on are good ones (ahem). At least until my 70th birthday, after which all bets are off. I'm goin' down in a blaze of chocolate glory.

After initially feeling more than a little miserable about the dreary prospect of years of dietary virtue, I am attempting to shift to my attitude by hunting out the absolute yummiest in healthy foodie treats. So - using the book 'Foods that Fight Cancer' as my inspiration - I thought that I'd make a little project of finding cancer-nuking goodies around the city that is my new home.

First up: Parap Markets. These are held every Saturday morning. The 'Yum' smoothie and juice stall has a new offshoot (at least, new to me), 'Yum²', which makes fresh drinks out of berries.

This morning I tried boysenberries, cherries and raspberries blended with cranberry juice. Cop a load of this. Icy cold, utterly delicious, and you can virtually feel the antioxidants blasting through the computer screen.

And here's a gratuitous shot of my plastic cup o'goodness amongst some of the locally grown fruit on sale...because the fruit at Darwin markets makes me happy.

I promise to leave no promising food source unexplored! I'm good that way.

Rainbows on Jetstar and whiskers on kittens.

In war movies, when a soldier is told that he’s been granted leave in a few days’ time, the audience just knows that he is doomed. Starting a blog after finishing active treatment for cancer feels a bit like writing an equivalent scene into your own life. You can see how it will unfold. Presumptuous talk of 'remission' will irritate the gods, the cancer will metastasize and your blog will become a series of meditations on your impending death (which you will feel beholden to make inspirational). Aha! you think - perhaps expressing these fears in a light-hearted, self-aware introductory paragraph will appease the evil eye! But as the sentences unfold you realise that all you’ve done is raise the irony stakes, and that the blog is now all but guaranteed to end with your untimely demise.

Spiralling, irrational thoughts like this have plagued me since the day I found a lump in my breast. I have feared that my most private thoughts will ‘tempt fate’ and attract death my way. I have been afraid to read news stories about deaths from breast cancer, lest this somehow make my own death more likely. I have been overwhelmed by a compulsion to wear ‘lucky necklaces’. As for omens, they seem to be everywhere – and, by their very nature, entirely lacking in subtlety. As I arrived at the radiography desk for the initial ultrasound to examine my lump, a woman who was covering her bald head with a red beret came and stood next to me. "Is this...a sign?" I wondered. The next day, awaiting the scan result, I visited a friend in a different part of the hospital – and the same woman, still in the beret, walked into the foyer. At that moment, I felt that I knew I had cancer. Many months later, when my plane began descent to Darwin Airport as I headed home after finishing active treatment, a goddamn rainbow burst through the clouds. I made a silent toast with the last of my $7 airline Shiraz, because – obviously! – everything was now going to be OK.

My rational self knows that starting a blog, seeing a woman in a beret or viewing a rainbow will have absolutely no bearing upon how my illness unfolds. As well as being completely detached from reality, these thoughts often make me feel guilty. They seem disrespectful of the people whose cancer blogs have ended in death; of the famous breast cancer sufferers whose obituaries I’ve avoided; of the woman in the beret – by regarding them as nothing more than ‘signs’ directed at me. This feels like the worst kind of solipsism. Believing that the universe would conjure up a rainbow purely for my benefit is, at least, harmlessly nutty.

But there is a bewilderingly narrow dividing line between magical thinking and the kind of ‘positive thinking’ that people exhort you to engage in when you’re diagnosed with cancer. Both involve the notion that thoughts influence outcomes. Is there really much difference between thinking (a) that seeing a rainbow means everything will be OK, and (b) that thinking "Everything will be OK!" means everything will be OK? Is the former really any nuttier than the latter?

I’ve read that people who let themselves indulge in a modicum of magical thinking are less prone to depression. I wonder if I should treat ‘good omens’ and ‘lucky necklaces’ like bubble baths of the soul, knowing that even though they won’t influence my chances, they can a least help me feel a bit better for a while. Can I enjoy these things in the way that a twelve-year old enjoys laying out a stocking for Santa, drawing pleasure and comfort from a nod to the magical despite the lack of any deeper belief? Perhaps it is OK for me to embrace these things while simultaneously (and inconsistently) refusing to acknowledge ‘bad omens’, and assuring myself that writing on a blog about cancer does not involve scripting my own death. But ultimately, I need to make peace with the knowledge that there is no supernatural torch spotlighting ‘signs’ on the dark path ahead, and forge on, guided only by my wits, until my eyes adjust to the light.

A patient for Lucy Van Pelt.

"There was nothing romantic about this cancer. Utterly arbitrary, it didn’t have a narrative. It was just blank-faced and dutiful, a civil servant among diseases. So I went deep into some glum pop music and constructed what stories I could there."        Giles Smith, Lost in Music.

Shortly before I left Sydney  (where I’d been staying in a rented flat while having treatment for breast cancer, with lots of support and TLC from my wonderful parents) to return to my husband and children in Darwin, I had the following dream. My mother is standing next to a big, old-fashioned desk. We both know that its drawer has not been opened since before I started treatment, and that its contents may need to be cleaned out. My mother opens the drawer and extracts...a watermelon. The fruit disintegrates in her hands, splattering juice all over the floor. She is left holding onto the skin – now looking like a dripping green sock – which she examines with concern and then hands to me.

On waking, I was torn between laughter and mortification. Oh, to be the possessor of a satisfyingly obscure subconscious!  Is it possible that I had been...I don’t know...bottling up a thing or two since I was diagnosed with cancer?? Initially I thought that the watermelon was a cute hint at my imminent return to the tropics, but on further reflection I began to suspect that it represented my level of psychological complexity.

Giles Smith used pop music to help him make sense of cancer; I’m going to try and use this blog. My watermelon is about to splatter. Stand back – this could get messy.