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| ISBN-13: | 9781742194851 |
|---|---|
| Publisher: | Spinifex Press |
| Publication date: | 08/01/2001 |
| Sold by: | INDEPENDENT PUB GROUP - EPUB - EBKS |
| Format: | eBook |
| Pages: | 400 |
| File size: | 700 KB |
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The Wounded Breast
Intimate Journeys through Cancer
By Evelyne Accad, Deborah Doyle, Eva Enderlein
Spinifex Press Pty Ltd
Copyright © 2001 Evelyne AccadAll rights reserved.
ISBN: 978-1-74219-485-1
CHAPTER 1
HORMONES AND BREAST CANCER
WHY ME?
'It was the same in the camp,' Aunt Rivke said to me. 'We were always sad at the death of one of ours, but at the same time, we would say: well, I'm still here. They haven't got me yet.'
She, the survivor, repeats to me regularly: 'To live is a sacred duty. Act as I did in Birkenau. Tell yourself: what I am seeing is a film, a book I am reading.'
Yes, I know: it would be better if I wrote instead of bullshitting. 'Do it for me, Lola,' you used to say. A lawyer is also someone who can bear witness. Will no one remember us?'
I could whisper to you these words written on the neighbor's tomb: 'See you soon'. But it's wrong. I don't feel at all like going there yet. Give me one more minute, Mister Executioner. (Francos: 1983: 14)
Urbana, 20 February 1994
VZ, my doctor, calls me on this Sunday morning, saying she has to talk to me and that it would be good if Alban were there also. Feeling something in her voice but also in her strange way of approaching me, I conclude that all isn't well.
She arrives on this grey and rainy Sunday, and right away asks, perhaps by way of introduction, although the request is absurdly trite, or perhaps out of habit, for a box of Kleenex, in anticipation of the drama to come. She sits down and tells us that according to my mammogram, I probably have breast cancer. I ask her how she can know this with so much certainty. She isn't very clear. However, Alban and I understand that the evidence is clearly shown on the mammogram, which VZ hasn't seen: the edges of the mass that for a few weeks has been weighing inside my breast. VZ has made an appointment for me to see a surgeon tomorrow, and he will tell me how to proceed. She adds that it would also be good if I saw an oncologist. She seems so sure I have cancer that I burst into tears. She tells me that crying is a normal reaction: she must have expected it, because she asked for the box of Kleenex. She must have had a deep knowledge of patients' psychology, and knows how to proceed in difficult circumstances such as mine.
Alban, my wonderful love, is with me. He can't accept the diagnosis: he says it can't be true, and doesn't believe the cancer is possible. He thinks a cancer can't be developing so quickly it will become as big as a fist in fewer than two months.
When I insist on asking VZ more about how she can be so sure about what she's telling us, she finally says, 'It is my opinion.' In my naivety, I think her answer is strange and unscientific, and unworthy of a doctor.
Later, once I have time to think more about the diagnosis, having consulted with many doctors both in Urbana and overseas, I also think VZ has been too ready and not cautious enough in prescribing me hormones – estrogen and progesterone – at a time when it remains unclear how useful they are, especially because I didn't yet have any symptoms of menopause, although according to my blood test, my hormone level was unusually low. VZ believed it was necessary for me to have Estrogen Replacement Therapy – ERT – in order to prevent me from suffering the osteoporosis my mother suffers from. However, I ask, Why hadn't she ordered more tests – blood and other tests – before she prescribed the hormones? In every article I read about ERT, the writer seems to indicate that cancerous cells can be activated as a result of the therapy. All the doctors I later consulted were astonished that hormones had been prescribed to me in so cavalier a way. However, all of them consider the risks run by patients who use the therapy from a statistical angle. Astonishing! Why has thalidomide been forbidden? Why so much fuss and screaming about 'mad-cow disease' when the number fatal consequences is relatively small? Medicos and scientists are so inconsistent! Doctors aren't responsible enough, and medicine and the pharmaceutical–medical complex is a huge profit-making enterprise!
Hormones are prescribed to almost any woman, both before menopause, in order to prevent conception, and during and after menopause, in order to slow down the ageing process.
Bettina: These hormones are called birth-control pills. Women who take them and smoke run huge cardiovascular risks, a fact that isn't emphasised enough.
Women pay a lot of money for this treatment, which is partly paid for by way of their insurance, an industry sector in which sizeable profits are made at the expense of women's health. It doesn't cost much to produce the hormones, but they're sold at high prices in the industrial capitalist countries. In the so-called Developing World, they're dumped at lower prices and are often of a harmful quality, in the name of 'providing aid to developing countries'. On top of this, women enter – or rather are pushed – into a medical system in which they lose control of their body. Hormones have many side effects, and the women who are prescribed them have to have various types of follow-up treatment so the medical machine continues to function economically. All this is sickening and upsetting! Women are losing control of their body, their money, their health, their life!
27 February 1994
Since last Sunday, I've been feeling as if I'm being precipitated into a chain of events I have no control over. It's like being thrown over a cliff. I'm terribly anxious. One of the sources of my anxiety, which I'll come back to later, is the slowness of the medical machine and the feeling I'm being forgotten.
Bettina: This is what so many patients feel!
Jane: Paradox: the patient is 'precipitated', rushed into a decision, while at the same time experiencing 'the slowness of the medical machine'.
I must recall some of the events that preceded the catastrophe. In the middle of November, I'd gone for my annual medical check-up. At the beginning of December, my doctor, VZ, was prescribing estrogen – 6 milligrams for a period of 25 days – and progesterone – 10 milligrams for a period of 10 days – and was telling me that according to my hormone level as determined in my blood test, I'd entered menopause. As yet, I didn't have any of the symptoms that apparently can characterise menopause: no hot flashes or cessation of menstruation, and so on. However, VZ said I had to take hormones in order to prevent me from suffering the osteoporosis that was afflicting my mother. When I asked her to give me the lowest possible dose, she assured me that the lowest dose wouldn't be effective against osteoporosis, and that I had to take megadoses.
Bettina: It's very important to warn people of the importance of dosage. How much each person takes has to be studied carefully, after many tests, and not given systematically; in fact, hormones are given when peri-menopausal or real-menopausal symptoms are present, never to prevent them!
I followed VZ's recommendation. She hadn't told me to follow my hormonal menstrual cycle; instead, she'd told me to start the treatment on the first day of the month: 1 December 1993. On the fourteenth day of the treatment, which happened to be the day I should have gotten my period, I was to start the progesterone, but I started bleeding like never before.
I was in Paris, receiving the France–Lebanon literary award, for one of my books. Conferences, meetings, debates, concerts and radio talk shows had been programmed. I continued taking the progesterone and estrogen. The bleeding became a hemorrhage accompanied with terrible pains. I immediately called Dr EL, a psychologist and gynecologist and one of the pioneers of France's feminist movement, and explained to her what was happening to me.
She said I must have been prescribed too strong a dose of the hormones, and advised me to reduce the dosage and take an anti-hemorrhage medicine, which she prescribed for me over the phone, because that evening I was to have a panel discussion about my book. She told me she no longer practised gynecology, but that her daughter practised it and that I could go and see her. That evening, she came to the debate and actively participated in it. I was very touched to see a woman I admired so much. She's written a book about women turning 50, which I must get.
I then left for Lebanon, to spend Christmas and New Year with my family. The hemorrhage had stopped, and I'd reduced the doses of hormones. In Lebanon, I contracted a terrible flu that wouldn't go away. I was with my dear parents, both of whom were ill: my father was dying of prostate cancer, which had metastasised to his bones, and my mother had the osteoporosis I'm supposedly heir to, as well as Parkinson's disease and all kinds of other health problem.
Already I wrote in my diary that 'I was absorbing all of their illnesses inside of me: the suffering of my dear father, his courage; all of Adelaide's abnegation, courage and care.' And it was my sister Adelaide who was taking care of my parents at that time. I felt so weak in the face of their illnesses; of my own flu – I wrote 'illness' – which would not go away; of life that was so full of suffering. Already I wrote, 'How much strength and courage one needs to live, and especially to live differently.'
Little did I know what was awaiting me, nor how prophetic my reflections were. Did my subconscious know? Can we really avoid these problems by listening more to our inner self, receiving our body's signals and learning to be more cautious? Have I learnt the lesson?
Bettina: There is always an anxiogenic terrain for cancer: encourage your readers to try not to internalise their problems – women in particular, especially women from the Middle East[Bettina has Middle Eastern roots], who tend to keep it all to themselves.
When I returned to Urbana, on 15 January, I wrote that I wasn't feeling well. The weather was freezing, and I came down with another cold and flu symptoms. These relapses were quite unusual for me: I'm not used to getting sick like that so many times in a row.
I surrendered to my sickness, to my sorrow, to the suffering that life seems to require of all humanity, to the fact that life ends in death! Why did I have such dark thoughts? I wrote that it was as if I'd absorbed all my parents' illness and suffering as well as Adelaide's courage, complaints and suffering; it was as if I were still bearing the weight of all this, irrevocably – and I'd underlined that adverb. It's the same word Gilles had used, in one of his letters, to describe the death of his only daughter, Florence, in her sleep, at age 30, from an aneurism: a blood vessel that had burst in her brain. I'd felt this death as a terrible injustice. I used to like seeing these friends when I visited my parents, in Switzerland. I haven't felt like going back to Switzerland since my parents have left there.
Bettina: For sure you absorbed your parents' illness! A disease like cancer is never by chance: the emotions send signals. If they're negative, and if the body is tired, it can get translated into a disease. It's also a way to put a stop to negative waves.
'I hurt all over these days,' I wrote. 'After the warmth, the beauty of Lebanon, the kindness of its people, it is difficult to be back in the Western world, so dehumanised, so cold, so stressful and cruel.'
I went to consult the advisory nurse, because my doctor, VZ, hadn't yet returned. The nurse told me to reduce my intake of the estrogen, but not of the progesterone, and to have a mammogram because of the unusual hardening in my breast. I'd also noticed the hardening, but wasn't alarmed, because my idea of something to worry about was a round lump rather than a hardening.
Bettina: Insist on this aspect, which many women are unaware of: we're taught to look for a round lump, not a hardening.
I thought the hardening was due to the hormones and that it'd disappear when I got adjusted to them. The nurse also advised me to reduce my coffee intake – which is already quite minimal – because it's associated with incidence of cysts and fibrosis in the breasts.
Bettina: It doesn't make any sense to be blaming my condition on coffee instead of on the hormones.
I've since found out that in French medicine, caffeine and alcohol aren't connected to breast cysts, in contrast to the fact that in the United States the connection is made routinely.
I'd seen the advisory nurse on 21 January. At the beginning of February I started bleeding again, when it wasn't yet my period time but rather my ovulation time. I called the nurse again. I had a hard time getting hold of her. I must recall how hard a time I usually had getting to see a doctor. I asked several times for a doctor – a specialist, I'd specify, only to be told there were no specialists! – and couldn't have appointments with a doctor until May: more than three months later! It's appalling how difficult it is to see a doctor in a city the size of Champaign–Urbana, which has two polyclinics!
However, I insisted. I told the nurse who'd suggested I reduce my coffee intake, and who finally got back to me by phone, that I'd started bleeding again and wasn't feeling well. She advised me to have an endometrio-biopsy because my bleeding could signify cancer of the uterus. She could get me an appointment with a doctor in Champaign. In the meantime, Dr VZ had returned, and I preferred to see her first.
When Dr VZ found out what was happening, she told me to stop taking estrogen altogether but to continue taking the progesterone, and gave me a 16 February appointment to have the endemetrio-biopsy. That little operation turned out to be painful, and I didn't like the intern, who performed it in front of VZ. However, when VZ saw the hardening in my breast, she told me to stop taking the progesterone altogether and to immediately have a mammogram. She warned me that if I stopped taking the hormones, I'd provoke bleeding. And it was provoked.
On 18 February, I went for the mammogram, which was painful because of the hardening in my left breast, and on the Sunday, Dr VZ stopped by the house to tell me I had breast cancer. The next day, I went to see the surgeon, who did a needle biopsy. On the Tuesday, he called me to say that the lab technicians were unable to detect whether it was cancer, because I had too much fatty tissue. In the report, I read 'lipomas', a word that at the time caused me to be both intrigued and worried. The surgeon had to do another biopsy, by opening up my breast while I was under general anesthetic, but he wouldn't be able to do it before 2 March, which would be in about two weeks' time.
Since then, I've been feeling as if I'm caught up in a frightening whirlwind I have no control over. Last Sunday night, after Dr VZ came with her announcement, I couldn't sleep: how and why can she be so sure? I'm completely disoriented, and so thankful that Alban, my love, is here with me. I'm very scared: it's terribly cruel to have to wait two weeks when you've been told you probably have cancer!
Yesterday, I saw an oncologist I didn't like at all. He made us wait 45 minutes and didn't apologise for the wait; Alban thought he'd probably gone to lunch. The man seemed arrogant and self-satisfied. He hadn't read my dossier, and barely examined me. He was more interested in ordering all kinds of pre-operation tests. Later, I found out that when doctors order tests, they're enabled to raise their fees considerably; in fact, the oncologist charged me a huge fee: $225 for a 15-minute consultation.
Bettina: It's good you're raising this disgusting aspect of some 'cash box' doctors!
I was appalled. Even though my insurance company would pay the bill, I wrote to the office of complaints to have the amount reduced. The official obliged, and sent me a letter of thanks.
The rapid birthrate of new synthetic products that began in 1945 far surpassed the ability of government to regulate their use and disposal. Between 45,000 and 100,000 chemicals are now in common commercial use; 75,000 is the most frequently cited estimate. Of these, only about 1.5 to 3 percent (1,200 to 1,500) have been tested for carcinogenicity ... Thus, many carcinogenic environmental contaminants likely remain unidentified, unmonitored, and unregulated. Too often this lack of basic information is paraphrased as 'there is lack of evidence of harm,' which in turn is translated as 'the chemical is harmless.'
According to the National Research Council, only 10 percent of pesticides in common use have been adequately assessed for hazards; for 38 percent, nothing useful is known; the remaining 52 percent fall somewhere in between.
According to the most recent TRI (Toxics Release Inventory), which is about the size of an average telephone book, 2.26 billion pounds of toxic chemicals were released into the environment in 1994. Of these, 177 million pounds were known or suspected carcinogens. (Steingraber: 1997: 103)
Jewel in the crown of industrial pollution, chlorine and phosphorus-rich pesticides, once ingested over long periods, are carcinogenic poisons that deaden or destabilize the central nervous system and irritate the digestive system ... When all the various causes of problems start to mingle and get overlaid one upon the other, it is hard to clearly identify any one in particular, and these pesticide-driven causes can practically go unnoticed when things get beyond a certain point, and our society is rapidly reaching just such a point. (Séralini: 1997: 86)
(Continues...)
Excerpted from The Wounded Breast by Evelyne Accad, Deborah Doyle, Eva Enderlein. Copyright © 2001 Evelyne Accad. Excerpted by permission of Spinifex Press Pty Ltd.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
Contents
Acknowledgements,Author's note,
Prologue The price of waste and pollution: an insidious massacre,
1 Hormones and breast cancer Why me?,
2 Death of father Hair, oil and mourning,
3 DNA report and S-Phase Take me towards healing,
4 Cancers, diseases, suffering all around Life, drop by drop,
5 Lymph nodes My breast offered in sacrifice,
6 Radiation My body like a battlefield,
7 Bureaucratic doctors But who'd want to live anywhere else?,
8 Breast cancer in France Why so hushed up?,
9 A no-win situation Celebrating friendship in Tunisia,
10 Paris breast blues The fear of recurrence,
11 Beirut, war and cancer Kahraba brings kahraba,
12 Searching for alternatives Incomprehensible pains,
13 Tragic irony One healed; the other hit,
14 My love has cancer Facing up,
15 Male hormones Liberté! Egalité! Fraternité!,
16 All around, yet again Is there an end?,
17 Recurrences Move on: the earth will take your shape,
Epilogue Medicine, death and recovery,
References,
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