Eating the Underworld

by Doris Brett

  gives a shrug.

  That’s all there is …

  And how should I call you?

  Dolphins, whales, angels under the skin,

  so you come, simple as answers,

  to rise, trusting,

  to the needle’s tongue?

  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 a
pplication 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 anticipation 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.

  I got my blood tests back today. My white cells are high enough so that I can have my chemo on Wednesday! I didn’t think I’d be able to do it; I feel ridiculously excited. I’m so impressed by my body. I want to give it elephant stamps and stars and medals. As well as my white cells, it’s managed to get my iron levels back up, without the help of iron tablets. I’ve been eating small amounts of red meat regularly, but my doctors were sure that wouldn’t be enough to get my iron levels back to normal before I started chemotherapy. I’m convinced the hypnosis has something to do with it.

  My hair is definitely falling out more than usual. If I run my hands through it, I come away with a significant number of strands. Other than that though, it looks normal. Should I cut yet, or shouldn’t I? I don’t want to lose a single day of looking normal that I don’t have to. I feel this with a real sense of panic. I am trying to hold off something; King Canute, trying to hold back the sea. My hair has become the marker. How will I know when it’s really time?

  I’ve done it! Last night, my hair started coming out in handfuls when I touched it. I knew immediately that I had to cut. Holding on to it seemed so wrong; it was like trying to hold on to a corpse.

  Martin got out the sharp scissors and gave me a crew-cut. There was a strange mixture of terror and exhilaration. I felt like a banana being peeled. But when I dared look properly, to my astonishment, I found that I looked quite elegant. Amantha was surprised too. She liked it. She told me that she had been scared that she would be frightened by the sight of me without hair. Martin also thinks it looks good.

  It’s my second chemo today. I’ve dressed for the occasion in ‘co-ordinates-by-chemo’—my new hat and a matching shawl I made. They look very swish and I get lots of admiring comments as I enter the ward. I change into my nightie and whip out my pièce de résistance: a soft, flannel hat to match. I feel unutterably stylish.

  I get into bed and the nurses wheel over the intravenous drip stand. As usual, vein-finding time is full of suspense. Will the nurses be able to find one? Will it shut down if they do? Will the drip work? Will it know, in that inimitable way of inanimate objects, that Martin isn’t there to fix it? Once success is achieved and the intravenous line is inserted and running, I breathe several sighs of relief.

  The mix of drugs produce the usual symphony of sensations. The strange, restless ache in my legs lasts longer this time, but I don’t get any urgent cravings for soldiers. I clunk into sleep as solidly as last time and wake in an instant to the morning.

  I notice, as I write in my journal, that I’m making more spelling mistakes than usual. The women in my internet group talk about chemobrain, the kind of fuzziness that, in absent-minded professors of philosophy, is considered endearingly eccentric. Less so in chemotherapy patients. Is this how it begins?

  But the big news is that I wake this morning to find a snowstorm of hair all over my pillow. Three weeks to the day, after my first chemo. Just as Jim predicted. Luckily, thanks to my new buzz cut, the strands on the pillow are only centimetres long. To wake up an
d find clumps of my normal, shoulder length hair all over my pillow-case would have been much worse. I thought I’d prepared myself, but it’s still intensely unpleasant to see that my hair no longer adheres to my scalp. It feels strange and unnatural, as if a part of me has decayed and been cast off.

  In spite of all this, there is also something incredibly impressive about the sheer sweep and power of the chemo’s contact. Like shaking hands with an alien, only to be blown back by the discovery that it is thrumming with some intense, high-voltage energy.

  It struck me today, rather belatedly I admit, that I’ve never thought of the chemotherapy as poison. The doctors and nurses regularly refer to it as that. So do my patients, when they first arrive to see me. But even at the beginning when I was skittishly stepping into the territory of hair-loss, side-effects and the unknown, something in me refused to label it as poison.

  It wasn’t a matter of diminishing the chemotherapy in my mind, whittling it down to Mickey Mouse size or pretending it was sugary sweet. Chemotherapy is strong stuff. But the experience of cancer is strong stuff too. It’s a demanding experience; an initiation, a passage, a transformative rite more powerful than most we are likely to face in our lives.

  Such times traditionally demand ‘strong medicine’, whether it is the ordeal of fasting in the wilderness, performing feats of endurance or entering another state of consciousness. Powerful substances, to be eaten or imbibed, are often a part of these rituals. They are challenging, dangerous even, but they also provide a key. They offer us a way of unlocking the gateway through which our new lives shimmer.

  Oddly enough, some years later as I am writing this manuscript, I press the ‘Edit: find in page’ key. The word I have typed in is ‘mother’; I’m looking for a section I’ve written about her. The cursor flashes immediately to the word ‘chemotherapy’. Startled, I look again. And yes, there it is, smack in the middle of the word—chemotherapy. How odd, I think. And then immediately, how right. It has been a mother; a tough, strict, powerful mother; the kind you know not to mess around with. But a mother. And like all good mothers, it was there when I fell over and it came to help me.