Life hit me with its full colours and sounds when I was diagnosed with breast cancer. And the feeling of being alive was so acute, as if it was an entity in itself, like when you are short of breath and breathing becomes a conscious experience.
In June 2005 I had a mammogram as a regular check-up. I was distracted when reading the result, as I was usually distracted when it came to my health, and due to a combination of factors, travelling, too much work, my son’s wedding coming soon, and mostly because I felt overconfident about my good health, it was only in September that I took the film to the gynaecologist. He examined my breasts, looked at the mammogram and said, to this overconfident woman who had never used hormone replacement therapy and who had breastfed, and thus did not consider herself at risk: “I would like you to have an ultrasound examination, but relax, there is nothing to worry about. You have a family wedding coming up and your birthday is also coming. There’s no hurry, you can have it when it is convenient for you.”
The wedding was lovely, an open air ceremony in a country house outside Rio, and my birthday, in October, was celebrated with my family and many balloons carried by little Sofia, my one-year-old granddaughter with whom I was, and still am, deeply in love.
Sometimes we take decisions without thinking much, over issues that don’t seem so important, and yet, those decisions are crucial. In November, I had to travel to San Francisco. The Global Fund for Women was having a gala and as Chair of the Board, I was supposed to make a speech. Just before my departure, having finished revising my presentation and the papers for the Board meeting, I decided to have the ultrasound.
Memories are made of moments, not sequences. I have vivid memories of moments of deep joy and sadness in my life, and not so many of moments of fear. My first memory of fear dates back to when I was very, very little, maybe three or four years old, walking in a street with my father and seeing a man with many bandages on his body. I have never forgotten the fear this image produced on me and how I held onto my father’s hand seeking protection. During the military dictatorship in Brazil, and later in Chile, I have also experienced fear, a permanent diffuse feeling, sharpened when I had to carry out certain tasks or meet people who were clandestine. The physical expression of fear in my body is always the same, my neck gets stiff, my hands get cold and sweaty, my body aches and, as a survival strategy, I get overly conscious of my movements.
When the examination was over, I asked the doctor if there were changes compared to the mammogram. She said that even though the two types of examination produced different images, she thought there had been growth in the nodule. It usually takes at least seven days for the laboratory to return the results of ultrasound exams. I asked if she could give me the result sooner because I was about to travel abroad. When she responded that it would be ready that same afternoon, I experienced all the manifestations of fear, because I knew that I had a tumour and it was 90% sure that it was malignant.
From that moment on, my life came into full bloom, as a precious object to be protected. The days that followed went by like one of those old movies, where characters do everything in a run. I talked to my brother and my son-in-law, both physicians, had all sort of scans and new mammograms and in less than a week was operated on by an oncologist surgeon who did a conservative intervention, a lumpectomy. Before the surgery I found a moment to call the gynaecologist, whom I have seen again, and I told him that he was dangerous to the women he attended.
When I awoke from the surgery, with my daughter, my two sons, my husband and my brother by my side, the doctor said that the surgery had been very successful, the nodule no larger than 2 cm, that from the laboratory exams done in the operating room, my lymph nodes seemed clear and that probably I would only need radiotherapy treatment. The feeling of relief was so intense, finished I thought. Gone. Done with!
I did not know then that my relationship with cancer was just beginning! Ten days later I went to the surgeon. He had the pathology report: they had found a few metastatic cells on the lymphs. I would certainly have to have chemotherapy. He suggested the names of three oncologists to see to continue my treatment. I left his office dizzy, hands sweating, neck stiff. I was experiencing deep fear of the treatment, although I knew that it was my bridge to life.
I chose the oncologist who had treated a friend of mine, a woman with whom I and others had started one of the first feminist groups in Brazil and published a wonderful book in the early 1980s on social and sexual identity. It was called Venus Mirror, and was very vanguard at the time. To my great sorrow, she had died a couple of years before, but I remembered that she always spoke of him in a sympathetic way rather than only as a doctor.
In my first consultation with him, he said that I would need six sessions of chemotherapy, with an interval of 21 days in between each. The first thing I asked him was whether in April 2006 of the following year I would be able to travel to Moscow because I was coordinating an international research project on violence against women and it had already been planned to have a meeting there. He assured me that I could be there. He also said that he had both bad and good news for me. My tumour was positive for a protein HER2 that can increase the growth of malignant cells. The good news was that just recently, a new treatment had become available, a kind of antidote to this protein called Herceptin, and that I could also use it, for a year, after my chemotherapy.
Why was I so afraid initially of doing the chemotherapy? Yes, I would lose my hair. But that was not the only reason. It took me some time to recognise that every disease has its symbolic construal and that cancer is construed as death. It is very, very scary to be carrying the brand of death while you are alive and fighting to remain alive. And nothing associated with cancer – baldness, needles, nausea – is construed culturally as a gateway to life, on the contrary. Stigma is omnipresent with cancer. It comes in so many ways. In movies and soap operas if a character has cancer, 90% of the times she or he dies before the story ends. In Brazil, the word cancer is frequently used in a negative metaphoric way such as “corruption is like a cancer that spreads and is then uncontrollable”. When you have cancer, you have to deal not only with the disease in itself but with its social representation. This stigma increases your emotional vulnerability, it disrespects and hurts you.
The day of my first chemo arrived. For a year and a half I visited that large room full of chairs, smiling nurses, people of different ages receiving treatment. Some were reading, others watching television, a few having conversations. Life was there, all around us. I was in fear but not in a panic. When my first treatment was finished, I went out to dinner with my family, with good wine and food. Celebrating the first round in my struggle for life.
As chemotherapy and Herceptin are both intravenous treatments, I always experienced a lot of tension when the needle was inserted. I learned later that each nurse was allowed to try it three times. My veins are not very strong, so for 18 months, that was the scary moment. I did a lot of exercise with my hands, pressing small balls, in order to harden my veins. My husband or one of my children would always come with me to the chemo sessions, waiting outside. They were allowed short visits from time to time, and I could see how relieved they were once the needle was in place. I remember one of the patients whose treatment usually coincided with mine. He was a young man, in his 20s, and he had a mother who kept coming in and out and always bringing him food. Her hands full of cookies, sandwiches, juice, an expression of pain on her face, in and out. Most of the time he pretended to be sleeping, to distance himself from the agony of his mother and get some peace. One day, he opened his eyes: is mother gone? Yes, I said, From then on, whenever we met there, we had good conversations. He had a great sense of humour. I tell this story because even though I understand the agony of his mother, she drowned him with her own sorrow. My family were also in deep pain but they have been so discreet, so elegant, in expressing their feelings, that I thank them for placing themselves at the backstage of the script, playing a supportive role but giving me enough space to suffer, to fear and to rejoice.
My hair started to fall out after the first session. Initially by little bits, and not all the time. On December 2005 I was honoured at the Rio de Janeiro Chamber of Deputies entitled Cidadã Benemérita (Citizen of Great Merit). There was a lot of hugging after the ceremony and all I could think of was: what if one of these women, after a big hug, finds most of my hair on her shoulder or in her hands? It was perhaps a more comic than tragic thought.
Then my hair became like cotton and fell out in big clumps. That too was scary. So I had my head shaved and put a wig on. Becoming bald was one of my greatest fears and yet, with the wig, I looked pretty much the same. An appropriate wig, that makes you feel comfortable with your looks, is a must for patients like me, who did not want to look different, did not want to walk bald in the street with people staring with pity (she probably has cancer, poor thing) or with disgust at the ugly sight. But there is no rule. Some women find turbans more comfortable, others don’t mind exposing their bald heads.
I knew that chemotherapy was a systemic treatment and that as such my immune system at large was being affected by the drugs circulating in my blood. I was told to avoid raw food of any kind, crowded places, people with colds, which is impossible. Apart from that, in the first week after each session I went on with my regular life, at a calmer pace but working, taking walks, reading, doing pilates, taking pleasure in conversations, food and wine, in intimacy and love, and in playing with little Sofia. But in the second week, when the effect of the drugs was at its peak, I felt so tired, so desperately weak with nausea and diarrhoea that, to keep depression away, I needed to think all the time that recovery would come shortly and that the next week would be great, as the third weeks usually were.
Oh those marvelous third weeks, when you feel that you are regaining your energy and you are impregnated with life again. And then the 21 days have elapsed and it is time to start the cycle again.
April arrived. The trip to Moscow was reassuring in two ways, professionally and physically. As a professional, I had worked hard on the analysis of the data and presentation of the results of the research and the meeting went very well, exceeding my expectations. Physically, as I went there just after I had finished chemo, my immune system was still weak. In fact, when you have this kind of treatment your immune system becomes a very important part of your life, a creature that you try to understand while reading all those strange names that circulate in your veins. Not catching a cold in spite of the low temperatures was my biggest reward, a gold medal that I carried silently around Moscow.
The Herceptin was started right after I got back and again my agenda was regulated, for one year, at intervals of 21 days. But apart from regular cardiology exams to check for possible side effects, I was very busy with life, in its many dimensions, and the Herceptin did not create obstacles.
Finally, a word about radiotherapy. It can be difficult. At least for me it was. And I did not know that it could be so. Fear came during the treatment. I did 35 days of radiotherapy. All went smoothly in the first weeks, I went to the sessions with a friend, and we always had a cup of coffee in a nice place afterwards, sharing stories, in that complicity of friends since school time. But during the third week I had burns on my breast that were so painful. I was treated for that, had a small break in the daily radiotherapy schedule and – finished the treatment. But I want to warn others that it can be difficult, particularly for those like me who have gone through chemotherapy and are told that radiotherapy is easy by comparison.
Cancer is a serious infirmity. As many others. Stigma is destructive. I wish there could be more information and more research on the combination of cancer and stigma.
Life is dangerous. And it is beautiful.