Eating the Underworld (19 page)

I
WAKE UP TODAY FEELING SAD
. It's the day before chemo and it feels as if it's my last day as my old, familiar self. I have, in my time, fairly spouted sentiments such as, ‘Change is good for you' and ‘If you go through life unchanged, you're not alive.' I suspect that if I met myself now, I would smack myself in the mouth.

I brighten up by deciding that perhaps I'm just getting some of my changes in a lump sum, instead of a yearly return. I picture a peaceful decade ahead of me. This, I discover, is not quite so soothing as I had anticipated, bringing back, as it does, the possibility of not being around in five years' time to enjoy the pay off.

But at the same time, there is something enormously
interesting
about this experience. A friend sends me an email wishing me luck for chemo. He ends it by saying, ‘Have a wonderful time.' It's an odd thing to say, but I know exactly what he means and it feels right. Even though I'm apprehensive about tomorrow, it reminds me that it's also an adventure and I love adventures. And I remember that they can be exciting and exhilarating as well as terrifying.

I also have to spend some of today pursuing one of my least favourite occupations: getting my photo taken. Over the last few weeks, Martin has been taking a series of photos of me for the cover of my poetry book.

The series of photos was not intended to be a series. It started off with one shoot. The word that comes back from the publisher is, ‘Great photo.' A few days later, it is amended to, ‘Great photo, but we'd like one where you can't see the chair.' A second series of photos is taken, with me carefully arranged to conceal any stray chair-like protuberances. The publisher sends back word, ‘Great photo.' A few days later, this becomes, ‘Great photo, but we'd like to see your hands.' Cut to the third photo shoot. Me, mutteringly increasingly pugnaciously, draped on a chair, with hands cunningly arranged in serene pose. Word comes back from the publisher, ‘Great photo.' A couple of days later, ‘Great photo, but we'd like you in something blue.' So this is why, on the day before I begin chemotherapy, when I'd rather be doing almost anything else (except, possibly, be beginning chemotherapy), I am having my photo taken—hands artfully arranged, no visible signs of chair, wearing blue and attempting to wipe the irritable expression off my face.

It's 15 March, the day I start chemo. I wake at around 3 am and can't get back to sleep, just doze for the rest of the night. Initially, I think it must be tension keeping me awake. But it feels different, buzzier than tension. Is this my adventurous spirit surfacing,
I wonder admiringly? Then I remember that last night, as part of the preparation for chemotherapy, I had to take dexamethasone, a steroid that slips you into overdrive.

I get up fairly early and pack my bag; my chemotherapy requires an overnight stay. Martin isn't working today and drives me in. It's not the hospital in which I had my surgery, but a newer one, closer to home. I've often been here to see my patients or give lectures and it feels peculiar to be walking in as a patient myself. The little overnight bag that I carry gives away my new, reduced status. I feel oddly awkward, almost embarrassed; like an employee who has been sacked, sneaking back into the office hoping not to run into any former colleagues.

This split between the professional me and the patient me continues when one of the charge nurses arrives in my room. I'm in bed already, in my nightie, and she sits down, puzzled, because she knows me but can't think from where. ‘You've been in before, haven't you?' she asks me.

‘No,' I say. But my confession of being a chemotherapy virgin confounds her.

‘I'm sure I've seen you here before,' she says, wrinkling her brow.

We have met before, I explain. In my capacity as a psychologist, when she asked me to give a lecture here.

Her face clears up, she looks embarrassed and we laugh, somewhat awkwardly. What a difference a nightie makes.

I've been worried about my veins. They're fine—as
in slender—and definitely on the shy side. I wonder how they'll stand up to chemotherapy. I've heard so many stories about veins collapsing, becoming corroded, painful and unable to be accessed.

The nurse comes in to have a look at them. She peers doubtfully at one on my left arm and says she supposes that might do. She goes off to do something else and says she'll be back in half an hour. I put my tape on and focus on my veins, imagining them swelling and rising to the surface. When the nurse comes back, to her astonishment and mine, a new vein has emerged on my other arm, standing up like a rope and begging to be used.

The drip is inserted and then we run into technical difficulties: the drip is not flowing properly. The nurses are discussing taking it out and starting all over again. Luckily, Martin, god of all mechanical devices, is on hand. He works out which dials need to be twirled and how. I release my eyes from the rabbit-in-the-headlights stare, brought on by the contemplation of yet another insertion of sharp object into unwilling flesh.

The chemotherapy drugs that will be fed through the drip are carboplatin and taxol. But like rock stars, they come with assorted chemical friends and hangers-on. There are drugs to prevent allergic reactions, drugs to prevent inflammation, drugs to counteract other drugs, and so on. They are fed one by one through the drip.

Years ago, I read a novel by C.S. Lewis in which, one by one, the ancient gods visit a household. As each
takes over the spirit of the place, the inhabitants become by turn, jovial, dreamy, aroused, witty, and so on. I am in the midst of this experience now, as each chemical in turn suffuses me. They announce their individual arrivals in different ways. With one, my arm burns. With another, my legs become uncontrollably restless. Another brings instant grogginess. This is phenergan, a compound I've only known previously as an antihistamine for infants. It also has an interesting effect on my speech centres. Halfway through it, I suddenly realise I am horse-devouringly hungry. ‘I'm hungry,' I announce. ‘Will someone go down to the shop and get me a packet of soldiers.' And then as I see their puzzled looks, and realise I am talking to morons, I enunciate in the kind of slow, deliberate tones used to address a six-year-old child: ‘Get me soldiers. I'm hungry. I want a packet of soldiers.' After a while—and more puzzled glances—I suddenly realise to my surprise that what I really mean to say is
sandwiches
. As it turns out, I get neither.

Jim picks that moment to pay a visit. He chats to me while I ask questions in orangutan. He appears to be able to decipher this and answers them patiently and kindly. Nothing of which I retain for more than four seconds. Now that he's arrived in the hospital, the nurses can bring on the taxol.

There is a small risk of severe and potentially dangerous reaction to Taxol. If it's going to happen, it's likely to happen on the first or second sessions. An antidote will be prepared and standing by. A nurse will stay in the room with me for the first hour as it infuses,
watching closely and then making frequent checks on me for the next couple of hours. My mind keeps flashing to film images of ever-vigilant FBI men flanking the president, and I realise that this is probably the closest I will ever come to having my own personal bodyguard. I attempt to enjoy the glamour, but discover that the problem with bodyguards is that they keep reminding you that there is danger.

The Taxol is carried into the room like royalty, followed by its faithful retainer, the antidote. Blurry as I am with the phenergan, I'm impressed by its entrance. Despite the prominent preparations for something going wrong, all of which shriek, ‘Beware! Beware!' the phrase ‘Welcome Taxol' keeps reverberating through my mind. Hypnosis works, I decide.

The Taxol takes its turn on the drip and I lie there feeling a mixture of welcome, a touch of apprehension and a lick of adrenaline. It's like entertaining a dragon. You may know it's friendly, but you're never quite sure whether an accidental flick of its tail or a fiery breath in the wrong direction might set the room on fire.

The nurse checks me regularly, but I feel fine. Well—fine, given that I'm drugged to the gills and my brain has decided to retrace its evolutionary steps all the way back to primordial slime. It's all going smoothly.

A few hours later, all of the drugs have gone through and the drip is switched to a simple saline infusion. It will run all night and then be taken off in the morning. I stagger in the direction of the bathroom, do something that resembles tooth brushing—in the way that a
child's stick figure resembles Michelangelo's
David
—and then more or less accidentally find my way back to bed. I close my eyes and wake in the morning.

I open my eyes to March sunshine. Apart from the drip in my arm and some residual grogginess, I feel okay. ‘Shouldn't I be feeling something, after having all those chemicals coursing through me?' I think, a little suspiciously. But apart from a flushed face which gives me a drunken reprobate air, and co-ordinates nicely with my still somewhat wobbly legs, I can't feel much difference.

The nurse gives me my going-home instructions. ‘Make sure you wash your hands very carefully and flush the toilet twice each time you go for the first couple of days.'

I look at her, puzzled.

‘It's to make sure the toxic chemicals you're excreting don't get transferred to anyone else.'

I leave, feeling like an ambulant Chernobyl. I'm intrigued by the ‘flush the toilet twice' instruction. Does the toxin's method of world domination involve jumping up and biting people on the backsides?

Inside a Tree

Veins

A
COUPLE OF DAYS LATER
and I'm feeling pretty good. I can feel that I've imbibed a chemical cocktail, but the feeling is subtle. I'm not nauseated. I have no pain. I've felt a lot worse than this with a common cold. I've been going for walks in the sun, chatting to friends and generally thinking, ‘Hey, if this is chemo, bring it on.' I'm not even feeling especially tired.

Tonight, as I am trying to get to sleep, I notice an irritating buzzing in my ears. I know that you can get hearing side-effects with cisplatin, but you're not supposed to get them with carboplatin. I lie awake, hoping the buzzing will disappear. It doesn't. I am up to building elaborate scenarios based on severe, idiosyncratic reactions to carboplatin, when Martin suddenly wakes up. ‘Damn,' he says, ‘the alarm system's playing up.'

I'm discovering that the other ‘big C' in this equation is constipation. This comes courtesy of the pharmaceutical cornucopia that is part of each chemo experience. It's not the most socially sophisticated topic of conversation, but one that has its own imperatives. I've taken to asking people their favourite remedies. Oddly enough, everyone seems to have one.

I'm developing enormous respect for bowels in the process. How unappreciated they are, like the untouchable caste in India. But look what happens when they go on strike—the bodily equivalent of gridlock. This could be the ultimate revenge of the underdog. I discover that they are such shy, retiring creatures that even the hint of contact with the surgeon's hand or instruments can leave them paralysed
with fright. I find this rather touching. An internal organ with a social phobia.

I've also developed a mouth ulcer. I have been given colourful descriptions of how they can run rampant when you're on chemo. With your immune system lowered, they can take off and aim for the big-time, spreading painfully all down your throat and gullet.

I swing into preventative action. This means brushing my teeth each time I eat, rinsing my mouth with baking soda and water, and coating the ulcer with milk of magnesia. This is clearly the basis for a revolutionary new diet—no-one would snack if they had to do that every time they put food into their mouths.

I am rapidly discovering that the set-up—during and post-cancer treatment—is a hypochondriac's dream. Instead of dismissing all those boring aches and pains, you're supposed to pay them instant attention. And not just you; the doctors get excited about them too. The kind of slight sore throat that you would barely notice in your previous incarnation is now met with instant antibiotics. It's a tight-rope walk through all of the ordinary nasties that your body would have scoffed at just a few short weeks ago.

I hate having to be vigilant about my health. I'm used to feeling fit and confident in my body's ability to deal with everyday wear and tear. But now I am like a snake shedding its skin in those moments when the old skin has sloughed off, but the new skin has not yet hardened. It's the vulnerability of all new beginnings, but in a concentrated way, distilled to the essence.

I look out of the window this morning and to my
surprise, see that the jacaranda tree is in bloom. I'm sure that's not supposed to happen at this time of year—it's April—but my jacaranda has always had its own sense of timing.

I bought it as a sapling nearly thirteen years ago. It was when my first book of poetry had been accepted by Jacaranda Press. Being big on symbols, I went out and bought a jacaranda sapling to commemorate the realisation of a dream I'd had since I was five years old and knew that I wanted to be a poet.

Previous to that, my only gardening exploit had involved a packet of purple bean seeds when I was ten. The combination of purple and beans seemed so strange that there was at least a chance that magic might be involved. I faintly nurtured the hope that they might provide some vegetative stairway to enchanted adventure.

What they provided was a batch of purple beans. Although disappointed, I found these fascinating enough until I discovered that when cooked, all the purple leached out, leaving me with devastatingly ordinary and clearly non-magical green beans. Which, to my mother's excitement, I then felt obliged to eat.

I planted the jacaranda tree in 1983 when Jacaranda Press first told me they were interested in the manuscript. Time passes. Jacaranda starts saying they want it but aren't sure if they have the resources to go ahead with it. My little bubble of expectation starts to look a touch flaccid. More time. More hedging. I begin to give up hope that Jacaranda will publish it. Then one day I look out of the window and see that the green
jacaranda sapling that I'd planted is now a stark brown stick with no sign of life. I am distraught. I race out into the garden for further inspection. It is dead. Utterly, unmistakably dead. Clearly the universe has taken to using vegetation for its postal services.

Jacaranda Press continues to become more and more gloomy in their prognostications until one day it gets to be too much. Screwing up my shaky, new-writer's courage, I ask them to either give me a contract or give up the manuscript. Within weeks a contract arrives. I have just brought it in from the post box, when I happen to look out of the kitchen window. There is the brown stick of the jacaranda, except this time, it has a haze of green on it. No-one has told me jacarandas are deciduous.

Months pass and my book is due to be launched. On the morning of the launch, I glance out of the kitchen window and discover that my jacaranda has produced its first flowers. No other jacaranda is in flower at that time and it doesn't flower again for another two years.

Seeing my jacaranda—a full-grown tree by now—bursting out in bloom, is surprisingly heartening. I have the irrational feeling that it is out there, barracking for me.

Today, the vein in my arm used for chemo is really aching. One of the things on the ‘Ring the doctor if …' list includes aching veins at the infusion point. Which leaves me debating: just
how much
aching qualifies, how long after the chemo, or doesn't it matter and what's just
ordinary aching
and what's
dangerous aching
? All the simple questions that you never think to
ask until it's a Sunday afternoon and it's all happening.

It occurs to me that perhaps the longish walk I've just taken might have sent extra blood pumping through my arm; hence the ‘Leave me alone, you fool, I'm trying to recuperate' message from my vein. I decide to leave it for a day and see what happens.

Yes! I got the message right. After a day's rest, my arm feels much better. When I go for my walk this morning, I try Napoleon-style perambulation and hook my arm horizontally instead of letting it hang down. My arm obviously appreciates this. I also garner some admiring glances in the street for my martial carriage. I suspect they are scouts for Madam Lash.

The sore throat and ear-aches that I've had for a few days have cleared up too and the touch of nausea has gone. I have no aches, no cold symptoms, no nausea. How luxurious. If only I could appreciate it like this in ordinary times.

Today is supposed to be my nadir, the time when my white cells are at their lowest. I wake up with the most energy I've felt in weeks. ‘I'm not supposed to be feeling this way,' I say to my friend, puzzled. ‘This is when I'm supposed to feel most tired.'

She shrugs. ‘So what's new? You've never done anything the way anyone else does it.'

I feel as if I should be tuned into my body's lowered-defence state. I do another mental check-up—but no,
I feel terrific. Lots of energy. Good mood. Clearly, I am an insensitive sod.

A revelation hits this morning. The bad taste I've had in my mouth lately is due to chemo, and the baking soda mouth-rinses I've been blaming are innocent. The taste is metallic and constant. And of course, as I am being pumped full of platinum derivative, there is good reason for this. I discover that the most effective agent for countering this is the oral application of cacao bean derivative. I eat lots of chocolate.

Rejuvenated by this unexpected splurge of energy, I realise too that in my frustration at how long the sore throat and ears lingered, I totally forgot to recognise the sterling job my body was doing in ensuring that the aches didn't get worse. This recognition sounds revoltingly pious in print, but manages to feel interesting and inspiring in real life. This is deeply worrying. Am I turning into a homily-delivering maniac? Will I end up door-knocking for the spiritually pure and clichéd brigade? Can I blame it on the chemotherapy?

I've finally found a wig which looks like my hair! Having done the rounds of wig shops—whose products transformed me variously from overdone opera diva to Dolly Parton—I discover that the place to go for real-looking wigs is the Jewish ultra-orthodox community. Because of their religious beliefs, wigs are an everyday part of life.

A friend gives me a contact number and I go to the house of a woman who runs a small wig business. She sits me down with a couple of Israeli-brand wig
catalogues. I leaf through them, looking for dark and curly, like mine. To my surprise, almost every page is filled with smooth, elegant and straight hairstyles. I remember my friends and myself as adolescents, frantically ironing, straightening and otherwise torturing our hair to get that
Seventeen
covergirl look—stick-straight and sleek. Even a hint of kink and you went straight to Jail and did not pass Go. Somehow, back then, I had associated curly hair with being Jewish. It seems strange to be looking at an Israeli magazine filled with the kind of hairstyles I'd connected with those epitomes of Waspish glamour.

Finally, towards the end of the brochure, a curly wig appears. Although I am doubtful that it's really what I'm looking for, the salon owner knows better. She gets the real thing out, flicks a few strands here and there and behold: it's my hair! And it looks totally natural.

I am incredibly excited. It's like finding a lost part of me. I hadn't realised what a relief it would be to know that I can still look like me when I want to. It is sitting on its wig stand on the kitchen table right now. Every time I pass by, I get a shock. I keep thinking I'm seeing the back of my head.

I have an appointment to see Jim today; a post-first-chemo check-up. He's hoping to schedule my second chemo a few days early because of Easter. In keeping with the death and resurrection theme, Jim tells me that's when I can expect to lose my hair. I was very tempted yesterday by a hat that was shaped like an elephant's head, complete with long, waving trunk and
flapping ears. I have visions of wearing it out and, in response to the questioning looks, tapping it solemnly and whispering, ‘Chemo. A side-effect.' Luckily, it was too big.

Jim tells me that my Ca125 has now returned to normal. It was taken after the surgery, but before the first chemotherapy. ‘So,' he says, ‘any seeds left are microscopic.' I look him in the eye and say, ‘I don't think there are any seeds left.' Jim looks at me, debating how to respond, and finally says, ‘Well, there won't be after this.'

He tells me that my white cell count is very low, which is what you'd expect at this point in time. It's 0.5. It needs to go up to at least 1.0 before it's safe to give me chemotherapy. Jim's not sure that it will have risen enough by next Monday's blood test.

My scalp is getting sore. It feels as if an overzealous butcher has been at it with a meat tenderiser. Does that mean my hair is getting close to falling out? No-one mentioned that my scalp would feel like this.

I email a query to my online ovarian cancer group and the answer comes back from a few women. Yes, your scalp gets really sore before your hair falls out.

The group is a godsend. I ‘talk' to the women at least once a day and have formed individual friendships with several of them. There's Virginia, unfailingly perceptive and compassionate, who has become the ‘wise woman' of the group; Sima, whose sharp intelligence and honesty illuminate our conversations; Ina, of the acerbic wit and failsafe bullshit detector; Anna, the physician, who sends me a wooden comb in antic
ipation of the day I will need it again; Emily, whose motto KOKO (Keep On Keeping On), is adopted by the group; Deb, the artist-turned-systems analyst, whose humour keeps us in non-surgical stitches.

We dive into the ‘big' subjects—death, pain, courage, despair. But we also make each other laugh, swap cutting-edge information, argue with and support each other. We cheer for each other's good news and mourn together for our lost members.

I plan to cut off my hair as soon as it's clear that the hair loss is well and truly starting. Martin, who used to cut Amantha's hair when she was little, has offered to do the job. The thought of that first irrevocable chop of the scissors feels so daunting. It's like having everything that is familiar and secure about myself ripped away. As if I have been trying to pretend to myself that I am still me and that being bald will reveal that I'm not. I imagine myself weeping, picking up the clumps of hair from the floor and trying to stick them back onto my skull.