Experiences » Mighty Aphrodite (courtesy ELLE India, October 2012)
What do you do when you’re diagnosed with breast cancer at 39, in the midst of a full life? You gather courage from loved ones, find resilience within yourself and PARTICIPATE in your own HEALING.
In 2005, a physical check by a gynaecologist revealed a growth in my left breast. I was advised a sono-mammography and it turned out to be an oval, well-defined and mobile fibro adenoma. It was benign. In 2010, a physical check showed up a second growth in the same breast. Mammography showed that the older growth had remained constant. The second growth was put down as a lobulated lesion with mild vascularity, sugges-tive of fibro adenoma. The test result went on to suggest a biopsy of the new growth.
My gynaecologist felt the report was alarmist and didn’t recommend a biopsy. She reassured me that she regularly saw patients with multiple benign growths in their breasts and we just had to monitor these through an annual ultrasound test. At that point, I could have taken a second opinion and/or insisted on a biopsy. However, I preferred to go with my gynaecologist’s opinion because that was what I wanted to hear; I took the myopic way out and opted for neither.
As things played out, a cancer diagnosis lurked not too far away. I now understand that while ‘oval and well-defined’ can indicate a benign growth, ‘lobulated or irregular margins with mild vascularity’ (blood flow to the growth) should raise enough concern to get a growth biopsied. Cancer cells invade the surrounding healthy tissue, thus the margins of a malignant growth are likely to be irregular.
I’ve been asked if I feel angry at having been misdiagnosed by a health-care professional in whom I placed my trust. I don’t. A doctor offers a medical opinion. My body is my active responsibility and I’m in control of what I choose to do or not do. I procrastinated for two years until my mate and mother insisted that I get a mammography done. In 2012, the test showed that the second, newer lesion had gotten bigger with irregular margins and more blood flowing to it, indicating a faster rate of growth. The report concluded that this lesion was suspi-cious for a neoplasm (malignant mass) and advised excision biopsy. The older lesion was identified as a benign mass.
I grabbed all reports and headed to a gynaecologist with a formidable reputa-tion. She too advised an excision biopsy, saying that the lesion had a good chance of being benign, but it was best not to leave it in my body. I fixed a date for the surgery with her. However my mother was adamant that an oncologist surgeon ought to perform it. A friend recommended a good one, who confirmed that this was a surgery for an oncologist breast surgeon and not for a gynaecologist. He explained that whether the growth was benign or not would be determined by a 10-minute Frozen Section Test while I was still in surgery, and appropri-ate protocol would need to be followed if malignancy was proven by the test. If it was, an oncologist surgeon’s depth of experience would help with critical decisions.
The oncologist surgeon performed an excision biopsy (lumpectomy) on me. The result of the surgery proved malignancy and my family was given the news while I was still on the operating table. It was a tough thing for them – to confront the possible loss of the one they love. I was 39 years old, and it seemed like I’d been handed a death sentence. My sister flew in from Frankfurt. Close friends took charge, providing hope and courage to my family.
I was calm when my mate told me that evening. My attitude was -let’s get on with the healing. I saw the diagnosis as a second chance to focus on the people and things that brought true meaning to my life. Ironically, the cure would bring me to my knees like cancer never could. I would hit a low some months later as I learned to fear chemotherapy. I did bounce back and master the fear, but it took some doing. Just then, though, I phoned my workplace to say I wouldn’t be coming in for a few weeks. Messages of love came pouring in from my workmates.
I was due for a modified radical mastectomy six days after the lumpectomy. My mate asked me to meditate on what this change meant to me. He feared that if I brushed this under the carpet, it would result in a dangerous emotional block that wouldn’t allow me to heal. At the hospital, I’d been offered the option of reconstructive surgery either at the same time as the mastectomy or later. I spent those six days in deep reflection. The answer jumped out clearly and was deeply linked to my life choices – I embraced the change that was about to come. I’d wear my scar proudly. Why should society dictate that when a woman has bravely overcome breast cancer, her chief concern should be to make-believe her breast is not gone? Importantly, how do newly diagnosed women seek us out if we disguise ourselves or pretend that cancer didn’t touch our lives?
That day, I lost my left breast and, in my head, I joined the legion of the Amazons, the warriors of Greek mythology who cut off their left breasts to be better archers. The surgical pathology report was chock-full of intimidating medical terms. That night, my tightly bandaged-up upper torso felt as if it were on fire. Even so, sedatives plus the fatigue from two surgeries in a week saw to it that I slept. From the next day on, I Skyped with pals from my hospital bed, smiled at the nurses and laughed with my family. My mate was with me night and day, a resolute giver of hope like a lighthouse to a storm-tossed ship. Friends made sure my hospital room rang out with laughter. The hilarity helped take the edge off reality. I was discharged on day three and went home with Hemovac drains still in place, red liquid sloshing in them. Two tubes emerged from under the bandages on my left side, running down into two bottles that drained the surgical area. Bloody Mary and Tabasco, I christened the bottles, to everyone’s merriment.
Two weeks after surgery, the bandages came off. I was happy to have my dear ones look and touch. That’s a beau-tiful scar, they’d adoringly say. The look of the scar wasn’t something I’d given any thought to but my surgeon turned out to be as good an artist as he was a doctor. He did a wonderful job that I remain grateful for. I was a mighty proud Aphrodite, especially at my new honorific – Ardhnareshwar.
Since some lymph nodes were also taken off, the mobil-ity of my left hand took a hit. I plugged on with the prescribed physiotherapy but couldn’t abide the slow progress. I rang my yoga guru for help. He forbade me from active poses but I started two sets of surya namaskar everyday three weeks later. Soon, I started a yoga therapy class led by a breast cancer survivor – a warm, amazing person who went on to extend help in many ways.
Cancer came to me with the beautiful gift of love. The hugs got longer, tighter and more frequent. It felt as if the universe had gentled towards me. Every act was offered up with tenderness. My mom-in-law is a psychotherapist and she played a vital role in my healing. Overnight, my spoken French intensified from talking about the weather to discussing the intricacies of my medical treatment and expressing deep emotions. I was also deeply touched by the extent to which my close friends were invested in my healing.
Next on my list of things to tackle was chemotherapy. Typically, for those diagnosed with cancer, treatment seems to unfold with dizzying speed. Like me, most survivors I spoke to were operated upon or started receiving chemo-therapy just days after they were diagnosed. They had no time to prepare themselves for what was to come. For me, a big resource was my cousin, an MD who’s currently studying to become a medical oncologist. I also read Siddhartha Mukherjee’s award-winning The Emperor Of All Maladies. Thanks to my friends’ active efforts, I reached out to women from different corners of the world. Every survivor opened herself to me and helped me prepare for the changes that were to come in my life. All of them were between 55 and 80; I sensed their chagrin at my having to face this at 39. They were deeply empathetic.
A troubling aspect of carcinoma was the stinginess with which the medical profes-sion imparts information. Oncologists believe that the patient is dealing with a possible terminal illness and isn’t in a position to absorb much. Besides, knowing the full impact of what is to come could take away the patient’s will to fight. Before the mastectomy, my surgeon left the question of chemotherapy hanging in the air and during one meeting he suggested I might not need it. This got my hopes up and I started dreaming of leading a ‘normal’ life soon after the mastecto-my. A week after the surgery, he revealed that I would definitely need chemotherapy. After many discussions, it was apparent that he had known all along, but withheld it from us.
A similar pattern was to repeat itself with chemotherapy. I was told to go ahead and eat, work and live normally through the months of therapy. Then I was told about the nausea, the loss of appetite and the hit that my immune system would take. I was asked to avoid crowded air-conditioned places and keep away from anyone with a viral infection. I was asked to stay away from high-stress situations likely to suppress my immunity. How, then, does one live normally? How best does one analyse all this contradictory information to arrive at the right balance? The doctors were busy with the act of saving lives. The rest was white noise that they filtered out, to enable them to work efficiently.
My surgical pathology report included the words ‘HerceptinTest: Positive (2 ) [to be con-firmed by FISH Technique]’. Breast cancers can be categorised as being HER2 positive or HER2 negative. The former is faster growing and considered aggressive; the drug trastuzumab (Herceptin) is given to treat it. However, Herceptin can have serious side effects and is an expensive ther-apy. I was told that if I turned out HER2 positive by the FISH test, it would mean an injection every three weeks in addition to chemo and possibly radiation. The cost of each injection was a ` 100,000; I’d have to take 17 of them over a year.
It took ten days for the HER2 test result to come. The day the result arrived and I turned out HER2 negative, it felt like a small victory. The absence of bad news felt like good news. I was told the ideal time to begin receiving chemotherapy was within three weeks of surgery. It was back to intense research as I began the quest for a medical oncologist – a doctor specialised in chemothera-py – while I was still tightly bandaged up and recuperating.
My mate and I met two medical oncologists to see what chemothera-py plan each recommended for me. Both proposed three cycles each of a cocktail of drugs known as FEC and Docetaxel to make up six cycles once every three weeks. I asked about the side effects of chemo and was led through the best and the worst. I picked the doctors and hospital I felt reassured by. I was asked to get an IV Port placed for administering the chemo medicines. Right through my treat-ment, I asked questions and insisted on answers until I was reassured.
My doctors told me I’d lose my hair between rounds one and two of chemotherapy, but they didn’t specify how. My sister spoke to a survivor and learned that the hair falls off in clumps on day 17 after the first chemo. I’ve been wearing my hair short for years. On day 10, I went to a men’s hair salon and got a crew cut. I then popped into a cosmetic store and bought myself a berry lipstick to spice up my new haircut. On day 16, the hair fell off. Not all of it, but enough to make me want to shave the rest off. My mate did the honours, giving me a few nicks. After my third chemo, my oncologist surgeon passed away from colon cancer. I was numb at first, then the sadness took over and I prayed for his soul.
One thing that became apparent from talking to cancer survivors was that besides conventional medicine, nearly all of them had helped them-selves through one or more alternative healing therapies. Almost all of the Mumbai-based survivors had sought help from holistic health counsellors Anju Venkat and Dr. Vijaya Venkat of The Health Awareness Centre. They have been a massive source of support for me. To this day, I remain on a special nutrition plan guided by them. From facing violent nausea, vomiting, mouth sores, body ache, weakness and feeling as if my body was on fire, I went to having no side effects at all. I also steeped myself in yoga, pranayama and reiki.
Medical science will call me a survivor five years from now. In my head, I’m already one. That doesn’t make me strong or brave, it just makes me human. I’m busy in the pursuit of everything I hold dear, from reading to writing to unwinding with dear friends to active fitness and long walks by the sea. I’ve brought dance and music back into my life, I’m learning drumming and contemporary dance based on ballet.
To those who are newly diagnosed, know that you are not alone. Reach out and seek help and you will receive it, just as I did. Far from being the end, let this be a beautiful new beginning. Cancer, or any illness, ought to be seen in its proper perspective and not be allowed to take over our life. It is important that life is lived fully and with joy. As my adored Buddhist monk Thich Nhat Hanh says, “Breathe, you’re alive.”