13th March 2009. It is a year since I had a total hysterectomy (along with the appendix, some lymph nodes and the omentum) for a suspected ovarian cancer. I remember that morning when I was put on a stretcher and taken to the O.T. I asked the ward boy I can walk, why are you taking me on a stretcher. While I was being taken to the stretcher I saw a number of people waiting to see me off. Many I didn’t even expect. I was very touched. The scene fills me with me tears today and I sob as I write.
The operation theater had some good music playing. I had a full women team of doctors – the anesthetist, the surgeon and assistant doctors. I thanked all the doctors before the surgery and felt proud to be operated upon by a team of women. I had spruced up myself by coloring my hair and doing a facial. I wanted to look good. I didn’t want visitors to feel depressed seeing me ill. The anesthetist also commented how lean I was. After being anaesthised I could hear some sound for a while but the bright lights got me to shut my eyes and lose consciousness. I only remember that my intestines hadn’t cleared and the doctors had to perform the surgery in the stink. The surgery lasted for almost six hours. When I was conscious I found myself in the I.C.U. I was scared for the first time. I was on oxygen and there were various tubes. Shailaja, Bali and Meena came to see me. I wanted Meena to sing. I didn’t want to be left alone. I asked the nurses to be around. They were very sensitive and kind.
The next 9 days in the hospital saw both ups and down. Oh the coconut water! Arvind was keen that I have adequate amounts. But it was more than I could digest. The vomiting started. I was not allowed solids for a few days more. The craving for solid foods was so much I could imagine the smell of fresh rotis (Indian bread). I gradually started to walk with the help of Shailaja and Arvind. Most of the nurses both male and female were caring. I had got used to the I.V. fluids which were pumped into me daily. For a person who had avoided doctors and allopathic I had it all in one go. I had a lovely room, quite luxurious with an A.C. which I rarely used. Shailaja spent the nights with me. The only thing I didn’t like was the nurses putting on the lights at midnight to give me an injection or waking me early morning to give me a sponge.
My surgeon Dr. Namrata Kacchara was very impressive. She was always simply dressed. I liked the way she walked with her back straight. She was quick and smooth. When the first time she had examined me I was surprised how easily she gave me a pelvic and rectal exam. When she did my dressing too I hardly had any pain. Around the 8th day after the surgery she announced with a straight face that the biopsy report had come, the ovarian tumor was malignant and that I would have to undergo 6 cycles of chemotherapy. There was nothing to fear as friends of hers had continued to work during the chemo in spite of being on their first jobs. I wasn’t scared. I was expecting it.
The initial diagnosis
I was in the office on that day probably the 6th of March trying to complete some work before the operation. Arvind had come from Indore with the CT scan and blood test reports. He forced me to come home with him at 4.00 p. m in the afternoon. It was unusual, since he never encouraged me to leave my work. We walked back home and I knew something was wrong. We had some tea and he announced the probable diagnosis so calmly, hiding all the anxiety which was playing behind. He then said that he had shared the news with my sister Chetna in Delhi. That got me panicky. I was worried how she would take it. I cried then. I wasn’t worried about myself. I really wasn’t. I had no fear at all. I phoned her and reassured her. It was hell of a time for Arvind though. He had to decide soon where to do the surgery, Mumbai, Delhi or Indore. There were numerous email exchanges and phone calls. I admire him for his confidence and decision-making ability. There was a wave of panic and fear in my family and our friend circle. Nobody could think that I could get sick – the health conscious girl. Of course many didn’t know the anxious side of me when I could go binging when faced with tension or go deep into myself and build fences around myself to prevent myself from getting hurt.
The two three weeks after the surgery were not so easy. I would find myself very sad in the evenings and wanting to cry for no reason. Until, I discovered that depression was normal after such surgeries. I would get easily upset. I didn’t like too much noise, the T.V. or the computer and was fussy about food too. Fortunately I had my sisters who took turns to come and take care of me apart from the domestic helps, Shailaja, Arvind and Bali. I had to do some daily rocking after folding my knees back and forth and side to side and some thumping of the back so that the internal organs would move inside. I had a urinary bag attached to a catheter which had to be emptied every few hours. During the surgery, there was a nip in the bladder. The endometriosis I had had since 1989 had spread all over. The tumor too was large in size, about 15x12x8.5 cm, resting on the urinary bladder. It was not easy to operate. Dr. Kacchara reassured me that 99% chances were that I would have no urinary problem. I liked her approach and respected her for it. She was honest. Fortunately I had no pain at all. She was surprised. According to her I was the first patient she had had who had not complained of pain. Was it the homeopathic medicine, prayers, and Reiki numerous friends were sending me?
When did all the symptoms start? I really can’t say since I had heavy bleeding in 2006 and discovered an ovarian cyst then. Again in 2008 I had heavy bleeding. Both times I had taken a course of homeopathy from my homeopath in Mumbai who had treated me for endometriosis twenty years ago. The more obvious systems started in November 2008 when I started to have severe bouts of constipation, gas and bloating. I would drink soups and have some home remedies and would be fine for some days. I was getting very anxious about my work too. Things moved very slowly and I would always feel stuck. The constipation continued until Jan 2009. I had started to feel mildly feverish and tired more easily. I wasn’t able to do more than one round of Surya Namaskar. Early February I experienced some pain on the left lower abdomen, severe exhaustion, depression, mild fever and sleepiness. I would go to the office but not be able to work for more than two hours. I would rest there. I was very worried about Bali. She was very frustrated with the design course she was doing and wanted to drop out. Knowing that I had a cyst in the left ovary and suspecting trouble I went to see my gynecologist in Dewas, Dr. Ratna Shihurkar, such a wonderful person, so soothing. She gave me a course of antibiotics but advised that I must undergo an ultrasound. Listening to my body signals was useful. A routine exam which Arvind and I both underwent in Bombay Hospital Indore revealed this huge tumor during the ultrasound. Of course I had not expected such a major problem.
But when I reflect back on the mistakes I made, things fall in place. In 1989 when I had first discovered I had endometriosis I had been advised by Dr. Satish Tibrewala to periodically undergo ultrasound to detect any recurrence of endometriosis. I hadn’t followed his advice. During the two bouts of heavy bleeding I took homeopathic treatment which helped. But after the treatment, I should have gone in for an ultrasound to rule out any other problems.
Whether to take chemo or alternative?
One thing I was a bit scared of was chemotherapy. Three weeks after the surgery chemotherapy was to start. After some discussion on why not pursue Ayurvedic medicine I agreed to chemotherapy since I didn’t I have the energy or the time to explore and be confident about its efficacy. However I had decided that I would take some complementary treatment along with this. I also discussed the experience of chemotherapy and complementary medicine with a few ex-patients.
When I think about it seems a long time back. The first chemo started on the 8th of April and the last on July 29th at Apollo Hospital in Delhi under the guidance of smiling-jovial Dr. Harsh Dua whom I referred to as Boman Irani when I met him the second time, laughed and said he would go off to Bollywood and I would be without a doctor. The oncology dept. of Apollo was underground two floors, facing the Pest Control department of the hospital. When I visited that for the first time to meet Dr. Dua I panicked. I felt I couldn’t breathe. The smell of the pesticides, the crowd of patients and the closed space made me want to run away. Bali very maturely tried to help me understand that there were numerous others too who managed this environment and that I could try to.
Each chemo session was different, lasting for about 10 hours. I would be admitted for one night with the chemo therapy starting at 11.00 am and ending by midnight or 2 – 3 in the morning. The whole treatment was administered intravenously. The drugs were expensive and the hospital had a rule that they had to be bought from the hospital itself. Sukanya fought for me and got a ten percent discount. In the open market and with my sister’s contacts I could have got as much as 25-30 percent discounts. But that is how private hospitals work. I gradually got used to the needle pricks. The first two days after the chemo were a bit difficult with some pain in the legs, sleeplessness and momentary pain in the stomach and a reduction in appetite. In the last two chemo’s I needed blood transfusion since chemo causes a low blood count. Reduction in the platelet count also led to dark bruises in the body. Between each chemo session I had to take two injections which helped improved the blood count as well go through CBC twice. I visited one lab all during the treatment. The staff there too was systematic and efficient and reports available online. These tests were a source of anxiety because the results determined whether I could have the next chemo or not. Except for the last chemo I had all my chemo’s every three weeks.
The role of complementary medicine
Along with the chemotherapy I did a number of complementary therapies. I don’t know about their proven efficacy but yet I did them on the advice of family and friends who had themselves experienced the disease or had been care-givers and because of my own faith in them. I used two Ayurvedic drugs Praval pisti (made from coral) to prevent nausea and vomiting soon after the chemo for 2 to 3 days. I also took Guduchi satwa (Tinospora cordifolia) which is supposed to improve the platelet count. I also took homeopathy during the whole period.
My morning started at about 4.30 -5.00 with some Vipassana, reiki and a prayer. This was followed by drinking about 2 glasses of water, a glassful of fresh/powdered wheat-grass juice, amla juice, some raisins, almonds, dates, aloe (gwar phata), alsi powder (linseed), and methi seeds (fenugreek). This was prepared for me daily by my sister’s domestic help Ramu for the whole stay of my treatment. After this I would take a walk for about 30 to 40 minutes and another walk in the evening too.
Another important aspect of my treatment was my diet which consisted of juices (apple, beetroot, pomegranate, and carrots), fruits, paneer, curd, soya milk, soup and generally a high protein diet as advised by the nutritionist at the hospital. Of course it was not only the food but the care, concern and thought that went into it by my sister Chetna and her domestic help Ramu.
I also tried two more therapies, EFT called emotional freedom technique which has been used successfully for various health problems and especially for trauma such as victims of war. It consists of tapping on meridians and acupuncture points along with some affirmations. I also underwent an energy healing session with Manya Lindsay who follows the technique developed by Martin Broffman, author of Anything Can be Healed who cured himself of cancer 35 years ago. She helped me understand how long standing sadness, repressed anger and a low self-esteem can cause such problems. She had herself cured herself of cancer using this method without using any chemotherapy. She advised me to indulge in some retail therapy (I bought myself a new set of clothes) and learn to love and take care of myself and do things I like doing and even change my work.
My great companions during this forced sabbatical were visitors, sudoku, books, a laptop (which I purchased there) and myself. For the first time in my life I had time to reflect on my needs, weakness, goodness, pent up emotions, etc. and really enjoyed it. The books I read consisted of both good literature, and some self-help books like You Can Heal Your Life (Louise Hay), The Monk who Sold his Ferrari, The Secret. One very important book was Cancer, my companion written by Dr. Arvind Bavdekar who was an orthopedic oncologist in Mumbai. He suffered from cancer of the stomach and opted to take alternative treatment. This was the first book I read and it instilled great confidence in me (it is available in English and Marathi with me, but there is also a Hindi version called Cancer, Mera Sathi). I also did some meditative techniques which helped me forgive people whom I was angry with or bitter about. This process made me feel very light.
The major learnings
But in the end, I want to share what most important in the whole treatment – ACCEPTANCE, LOVE, GRATITUDE.
My own reaction to the illness was it has come and it will go. My faith in Vipassana helped me considerably since Vipassana is based on the fact that nothing is permanent and looking at all experiences or sensation with equanimity or ‘samata bhav’. It is not that I did not get distressed. I did. Sometimes I wanted to die. I felt that Arvind and Bali could manage without me. But these were short spells too which came and went.
There was another image which always added to my confidence. When my mother was seriously ill some years ago and I went to see her in the ICU she said, “Sharir hai, to kabhi dukh dega, to kabhi sukh” – If you have a body it will give you pain sometimes, and joy another time. Her words have stayed with me along this journey. Though she is 85 years, fortunately it did not register to her that I was going through this.
The amount of LOVE, I have received I cannot count. During this period I felt I was surrounded by love. And that I feel was the most import aspect of my healing. Visits, emails, phones, hospital support, books, music, clothes, letters, organic food, flowers, alphonsos, HUGs…… oh! a basketful of it. The love, care and support we have received – from my family (my seven siblings, spouses, and children) Arvind’s uncles and aunts (from ages 50 to 85), my friends from school, college and work, the whole of Arvind’s friend circle, neighbors, domestic helps, teachers, colleagues, people who I hadn’t met in 20 years and those I did not know but guided me; cancer patients who advised me and instilled confidence in me. Though I did not believe in spirits I felt I had the love of my parents in law who dearly loved me. I could almost sense their presence and affection.
During this period I realized how GRATITUDE is so important. It gives so much happiness to oneself and those to whom you show your gratitude. On my last chemo I made cards for the nurses, doctors, the cook and the lab technician and wrote letters to my doctors in Dewas and Indore. I can sense that they were touched. One nurse said “Can you make another copy of this; I would like to put it up in the staff quarters”. Dr. Suri, the pathologist whose lab I had visited regularly said, “Can I contribute in any way to your organization.” Dr. Kacchara said, “Get well, then we shall work together”. And you know I thanked the room I lived in, the terrace I walked on, the neem and gulmohar trees, the aloe, and wheat grass, the birds who came every morning………..and I felt really really gooood.
And finally I wish to thank all of you have been with me in this healing journey. I am thinking of you all today and bless you for being with me.
13th March, 2010.