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PATH IN PAIN

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trigunayat
trigunayat Member Posts: 1

PATH IN PAIN

 

When I was alive I was known as Sumita. I was born in 1947 and my parents were healthy to say the least. Only one point remained of which I was barely aware of. My maternal Grand Father had died when I was very small - he died of cancer when I was a five year old. In Hindu families we pay obeisance to all departed relatives, particularly of the older generation. Year after year the family engaged in Shradh - a ritual for peace to the departed Atma(Soul). Some older generation members mentioned memorable deeds of my Grand Father and in the Family house in Katra Neel, Chandni Chawk, and his photographs adorned the walls of my maternal Uncles.

Like all others my own body was made up of the five Godly elements; Prithvi, jal, pawak, gagan and Sameera. To the uninitiated, I translate this as earth, water, fire, sky and ether. The Hindus believe that the body is made by a heavenly combination of all above. Once the body has been formed and made ready for development in the mother's womb a portion of Paramatma - the ultimate being detaches itself from the main body and settles itself in a separate atomic sub-space near the heart and remains there till the body is a living mass. This is called Atma and it does not mingle with body, thereby remaining unaffected and pure despite sinful and unholy carriage of the body itself. I see the combination of constituents as very apt. Ether represents the unseen atman, it goes first of all, then as the body burns on the pyre of fire it sends out the gasses (air) into the sky and lastly the ashes are returned to water - such are the Hindu systems. All five elements returned to the nature.

I was married when I was 28 years old and had my first child a year later. Then 3 years later I had a full term born daughter who did not survive as I had contracted German measles while pregnant. My son was born 3 years later when I was 33 years old. The family was complete. We were deeply religious and I was a vegetarian. In our families drinking and smoking was considered taboo; I abstained. I looked after my body well and was the healthiest among my siblings. I naturally maintained body weight and was an avid walker. For exercise I enjoyed housework, even though, at festival times I was quite run-down. Even in retrospect, I do not think I was in contact with any carcinogenic substance ever. Actually, the fact of my maternal grand fathers' cause of death was completely forgotten when I contacted the disease my self.

***

When I was 56 years, I was invited by my son in law to visit them in UK. They decided that I be there for my 57th birthday. I set out for their place in Berkshire in October 2004. My husband was to follow later in November, the month of my birth. After the birthday we would return together. During the 20 days or so that I was alone with the children, one day, all heavens fell on me. I thought I felt a solid mass in the top left quadrant of my left breast. I tried to dismiss the dreaded conclusion as here I was in UK with my children all ready for a European vacation. My husband was not with me and worse, when he would join me there would be hectic holiday activity, all over again. I could not share the suspicion and spoil every body's spirits. I kept it to myself, allowing time and hoping that my suspicion would go away and would not have the disease. Time kept ticking and my husband joined me as scheduled. I was overjoyed and thought I will share the doubt with him soon, right now I did not want to dampen his spirits.

 As luck would have it I had to drop off from the first phase of the vacation to Switzerland due to some Visa formality. The rest of the family went ahead at my insistence. They joined me a week later. By this time my lump was growing by the hour. Two days earlier as I lay in bed at night there was a very sharp and most unbearable stab of pain in my breast. In my mind I knew that the worst had happened to me.

After their return, it so happened that we got news that back home my son was to go to the States for a longish period. The trip was cut short and date of return preponed. I decide to stay quite for a few more days and run the tests back in India. I was aware that medical expenses in UK were prohibitive. I t was now over three weeks that I had lived with the misery and not told a soul of what was happening. Outwardly, I kept up a cool façade and no one knew my secret. On return, we were instantly engulfed in the enthusiasm of my son's preparation to go abroad. I decided to wait a few more days before I saw a physician. Some 4-5 days later the US trip was cancelled and I thought it was time to speak to my husband

After his bath, my husband was combing his hair when I told him that there was a lump in my breast. Instantly, I saw my husband sink to the bed. I sat next to him. With trembling hands he began to explore around; I guided him over the lump. Then he put his hands down and said, "Now only the doctor may say some thing, the lump seems to be very large" We did not waste further time and next day we were at the local clinic. The lady doctor referred me to a nearby hospital for an FNC test. We were at the Hospital same day and the surgeon there said that because the lump was large she would do a lumpectomy rather than inserting a fine needle into the lump and drawing out solid samples. Since we had no other idea we agreed. The lump was removed next day morning and it took another 4-5 days for the biopsy report to come in. I was discharged and home when the report came in. My fears had been confirmed.

My journey with CANCER had begun.

The Pain

 

No one had any doubt of the disease and there was tension everywhere. My son and daughter in law paid greater attention to me and my husband chucked his job so that my treatment could be given priority. Some how, I neither felt the anxiety nor had doubts of the treatment not being successful. One day I remarked to my husband, "God has been less than fair as he had affected my being, my womanhood!" The husband said nothing, as if he was dumb-struck. I began to see changes all around me. The children were more loving and the husband would hum a song while cleaning the toilet seat. All this was new to me.

My case was transferred to a Cancer Hospital.

All women should know that cancer (breast) is not preventable. Its risk can be reduced and if it happens then timely medical intervention can cure it. Clinically, a lump, a swelling, dimpling of breast, any persistent redness or scaliness, retraction or a discharge from the nipple are fore-runners of doubt of the onset. If the sign is pursued for just a few days, one can see its rapid growth. To be a woman is one cause of breast cancer and it is aggravated as age progresses above fifties. In fact 50-65 is the most susceptible age band. Things can get worst if there is family history of cancer, obesity, post menopause, smoking, and use of carcinogenic substances or injuries to the breast. Uses of alcohol and hormone replacement treatment at any stage earlier also predispose the disease. Then, of course, there may be genetic risk.

All cells in the body constantly replicate and during the process if some thing goes wrong and the cell division does not produce identical mirror images of new cells then nature causes such incomplete cells to commit suicide and die. Some times, if this mechanism fails then the deformed cells, called mutations, will also replicate like the parent cells and form its family much faster than healthy cells. If many such mutatated cells join up and settle down in a fertile area such as the breasts or else where) the form a tumour. In turn a tumour may either be benign (non-cancerous) or malignant (cancerous). The malignant cells are capable of traveling to distant locations and multiplying rapidly, rather out of control.  Essentially, the genes are behind all mutations and several aspects of cancer impact ones prognosis in an individual.

In side the breast, a cancer growth may start in a milk gland or duct or in the nest-like fatty mass. The cancer is described as per its starting point. When the cells move out of the duct or lobules into adjoining cells they are called infiltrating or invasive type. The lump so formed can be physically felt and be clinically detected. The actual cancerous cells lie within the hardened mass and therefore may be much smaller than the tumour itself. The best bet of a cure is in its early detection. For this reason a mammogram and other clinical procedures are best suited. Doctors recommend periodical checks in vulnerable cases and yearly mammogram above 55 years of age. A weekly self examination is also helpful and any cancer hospital will be happy to pass on the self-process to any one. Once suspected, the options are;

Non-cancerous - go home and have a ball

Low Chance     - wait and repeat tests

High Chance    - Biopsy, X-ray, FNAC test and so on.

In the Biopsy the pathologist will look for evidence of presence of cancer cells of the breast tissue, and if found then, determine its type, size, aggressiveness and treatment options. He will also see if cancer cells were present only at the core of the sample or existed in the peripheral areas (called margins) as well. He will then look at the lymph nodes to see if they too are affected, and if so then how many of the glands were affected. He reflects these in his reports as Type, Grade (indication of speed of growth), and extent of Lymph node involvement.

Based on the report the Doctor will order mammograms, Blood tests, Chest X-rays, Bone scans, CAT or MRI scans to ascertain exact size and location etc. of the affected areas. In my case the survivability forecast was as per stage IIIB with 49% chances to survive another 5 years. I had tremendous faith in God and lay trust in the Astrology forecast. At heart I prayed hard and made a visit to an Astrologer who had made my belief in this science happen in the first place during my earlier visits to him on different maters. Now I depended on him completely. As I sat on the floor seat, he said that this time around I was visiting him for a serious illness; I was flabbergasted and deeply relieved and knew at once he will have as solution to bail me out completely. He looked over my horoscope again and cross-referred it with the lines on my palm. Then he said that times will be hard under the influence of Saturn till October 2005. I would be hail and hearty thereafter and enjoy long life with my children and grand children. He prescribed weekly visit to local Shani temple and described the correct puja details. In times to come I was at the Shani temple every Saturday, come hail, rain or sunshine. We did all that was implied or understood and this one factor gave me the greatest strength of all. Around October 2005, my medical condition was very poor and I could not visit the temple any more. The astrologer prescribed other relief options and said he would perform these on his own and I was to visit temples only if in good health. He assured me that as the Saturn would transit to a new house its effect always changed, some times for the betterment and sometimes as harsh, but soon, I would be out of the disease. Another bad influence was coming up under Guru being unfavourable and that would last 5 months, but it would not be very adverse. I was greatly relieved.

The Path

Finally, the treatment for each stage is divided into 4 phases, namely, Evaluation, Treatment, Prevention and Follow-up. My findings stated that the tumour was bigger than 5 cms. and 3 of the lymph nodes were also affected, this put the disease as Category III B. The Tumour Board at the Hospital decided to conduct session of 6 cycles of Chemotherapy followed by radical masactomy of the left breast and Radiation therapy. No Hormone Replacement Therapy was recommended due to ER-PR being positive and Her 2/neu being slightly positive. I was warned of side effects of the radiation. These were fatigue, redness of breast (I had blisters at two places), skin colour changes, loss of appetite, and suppression of sex drive.

Chemotherapy may reduce recurrence chances by 25% and chance of death by 15%. Without the therapy 66% women in my age group (57 Years) had about 25%-33% more chance of recurrence. I was given 70% chances to survive 5 years and 46% chance to live 10 years. I was told Chemotherapy side effects were more severe and these were Hair Loss, nausea and vomit, loss of appetite with weight gain, soreness of the mouth and vagina, fatigue, susceptible to infection, chemo-brain (forgetful and loss of concentration), sexual difficulties, tingling numbness of hands and feet, menopause side effects, infertility (pre-menopause), damage to the heart, Leukemia and lower quality of life. I knew I had to prepare for all this and would need all help for my family and friends. Eventually, I was lucky to get this in great abundance

Initially, the doubt of cancer and start of investigations and later confirmation of the disease had completely devastated me. I looked for strength in every one and every thing around me. I could see that my family was itself reeling under a shock, but my faith in God, astrology, friends and family and lastly in myself was unshakable and I needed all this most right now. I was apprehensive of living a totally changed life, not only for myself but for the whole family and lived in fear of the unknown. This was all internal to me but outwardly I would listen to other patients in the cancer hospital and advice them on ways of coping with the illness. Soon, I was aware of every other patient's problems, where they lived, who all cared for them and generally how they were responding to the treatment. This gave me a top-of-the- patients appeal and all doctors, nurses, staff, sweepers, and guards became my good friends; the hospital ambience itself became friendly. If I was angry with life it was because of the attack on my womanhood. I lost my hair and breast and I could perform less and less as the woman of the house. All these were what I was proud of. I may have got the disease due to some sin I may have committed in this life or previously, but the attack on womanhood was rather personal. This apart, I could keep the depression at bay due to support of others and my interest in the hospital and home alike, of course God's blessings were on my side, he had given me strength to bear the unbearable. I never cried or cringed and my only sadness was my inability to take care of daily life. I tried to keep all my activities on schedule from breakfast to cleaning the toilet.

My husband had left his job and now he became my full time guardian. He did all physical duties but his mental support to me was sincere. He always made me look forward to the day I would be cured and got back to all my routine. He was never faulting on his control of visitors and ensuring the hygiene in my room was not violated and flow of visitors did not tire me out. I would always help him to make batches of medicines - there would be 7-8 pills that I had to take at any one time. I needed help from him to bathe as the wound was in the centre of my body and I found it hard to turn and twist. I would guide him in the dressing of the wound and application of the bandage; I tried to maintain my control as far as possible. When ever I was a little better I would cook a dish or two and the whole family would go gaga over it. Emotionally my husband had entered into my mind and for the first time I realized and relished such close bonding with him, my dependency on him was complete and we seemed to share all this together.

October of 2004 rolled into November and my disease had been confirmed, categorized and treatment for cure began to gather momentum. The first of six cycles of Chemotherapy with injection of 5FU (through timed drips) with Indoxan and Epirubin was begun on 9th of December,2004. I was admitted to ward and the dosage was administered under strict supervision and took close to nine hours. Outside the door was a small notice, "Cancer is Curable" and I could read it each time some one opened the door. I correlated this to my belief in God and Astrology and what Doctors had said over so many meetings. I was certain that all this would end like a bad dream soon and I was never too apprehensive about the outcome. Next day I was at home after discharge and the next cycle was due only after 3 weeks. First week was uneventful but on day 14 after the dose I saw a big clump of hair come to my hands, the inevitable had begun. Over the next 3 days most of my hair was gone and I had no one to blame. I did not let my frustration show. The family jumped to my support. My daughter sent in special scarves from UK while my sister brought home a wig. My husband wore it over his balding head and demonstrated it. It was a nice gesture but I decided to use only the scarves as all other cases did in the hospital. As chemo-cycle after chemo-cycle began to happen I became weaker and weaker but I decided to stay on my feet and collapse as most other cases at the hospital. Many patients would lie down lifelessly on benches provided by the hospital till their turns would be called. I had no appetite and no taste, yet I ate every bit on my plate. However, some cycles were rescheduled due to weakness and low blood platelet count.

I reported for the sixth and final cycle on 28th March, 2005. During his examination I pointed a small slick looking spot to the Medical Oncologist on remaining left breast. We did the cycle, but found a reference to Surgical Oncology to investigate the spot.

More tests and more scans followed and the verdict fell heavy on me and the family. The new patch was cancerous and surgery was to be done urgently to remove the whole of the left breast. The explanation was that breast capillaries were very narrow and some times the cancer cells hid there safely without chance of destructive medicine reaching there. The medical board discussed my case and decided to perform Radiation Therapy and if required then do another set of Chemo cycles.

With support of Doctors and family my morale remained high, but the family itself took a severe beating at the recurrence. My husband broke with onset of type 2 diabetes children grew more edgy, they exchanged more and more matter from various cancer sites on the net. Relatives made their visits more frequent and calls from friends became endless.

Clinically I had gone through bone-scan, another Mammogram, whole body ultra sound, CCET scan of abdomen and fresh set of blood tests and biopsies.. The recurrence was confirmed in the MR Imaging. The verdict was tumour emboli in deep dermis and its lymphatic. The Oncology surgeon removed my breast on 9th April, 2005. I sustained my morale all through and I was convinced the worst of it was over. I began to happiness on faces of all persons around me. I even tried to involve doctors and nurses on use of prosthesis artificial breast. I asked my daughter to send me one from UK, it arrived almost at once. I was keen to use it some day, but right now my chest was one huge raw area. The chest wall too had to be removed as it had been affected and the wound extended right up to the collar bone. Skin from my left thigh was grafted over the entire area and I had another major wound and bandage over the left thigh. Ten days after the surgery I had another skin graft to cover an unhealed area.

Radiation Therapy commenced on May 17, 2005. For one week I felt nothing. The doctors had done their homework and the radiation was controlled well for strength and the angle of its application. The actual application was in parts of a second but the waiting usually was for an hour and preparation lasted some ten minutes. Then the radiated area developed blisters and the graft became broken at two places. After a break to give some healing time the radiation would be commenced again. The last session ended in the second week of July.

I once again found myself in the medical Oncologist' chamber on 18th November for a round of chemotherapy. This time it was Gemcite injection (drip) with Xeloda tablets. The effects of this medicine were not harsh. I began to feel better, look better and eat better. I even found some hair growing back, luckily this time they were all black with no trace of white. To add to this the date of offending stellar intervention given by my astrologer was also approaching. I had the first opportunity to use the prosthesis during a family get together, despite the unhealed wound. There was cheer on all faces. The festive season of Diwali was nearing and there was a marriage scheduled at Calcutta. I felt fine and confident to attend and actually enjoyed the trip which included some trips for shopping for every one back home. Even the remaining wound on my chest could be cleaned at home with Betadyne and get a coat of Gentian Violet. We were all convinced the bad time was behind us.

After four cycles of this chemotherapy I felt cured and did not feel the need for further cycles. I told my Doctor and he was aghast at my decision to stop further drips. They discussed it in the tumour board. The doctor tried to convince me once again and ultimately wrote the warning note that I was high risk for recurrence and distant metasis. He advised a FISH test for HER-2/neu again. This time it showed favourable for Hormone Replacement Therapy (H R T). A set of tests were rerun, including Bone scan and ultimately Hormonal Therapy was commenced with Aromicin every day.

During a routine check on October 24, 2005 the X-ray showed left lung had pleural effusion and Doctors recommended palliative treatment. They decided to administer six cycles of Docetaxal and Epirubin through drips as the fluid biopsy showed malignant cells (metasis). I did not let this shake my confidence in myself, God and the Astrologer; this helped me maintain my brave posture. The grind of Hospital visits started all over again as each cycle consisted of 3 sub-cycles and spread over 18 days. But this did not fully help in drying up the offensive fluid and I had to undergo surgical removal of the fluid. They inserted a drain tube in the left lung area and after it stopped to ooze any further they put in a certain medicine that would help retain the lung in its extended position and thereby avert a collapse.

But soon after this they suspected that my heart may have weakened and I had to undergo angiography in another hospital. I got the impression that the doctors were fooling around and trying to fleece me as I was never convinced of any problem with the heart. I began  to consider most tests superfluous and unwanted, for that matter even continuing with the chemo seemed to be exercise in futility. I once again opted out of further treatment. By this time the Medical Oncologist had started treatment with Vinorelbine on 27 May, 2006.

After 2 cycles of the drug administration I experienced severe and unbearable pain in my chest each time the drip was started. Then one day on 31st May, 2006 I had high fever and had to be hospitalized. Blood tests revealed that I had e-coli bacteria and that was bad news. Very powerful antibiotics were used to cure this. Then, my visit to hospital began to become frequent and every time it was infection from the same deadly virus. The period of infection free time began to reduce and stay at the hospital began to get longer. During a good period I went to visit my daughter who had by now shifted to Bombay. Every thing remained under control for the 12 days that I stayed in Bombay air journeys were no problem.

The most severe attack came two weeks after I returned from Bombay. This time I had changed the doctor and the Hospital. They admitted me in Emergency and straight away I was put on Oxygen and antibiotics on 12th October, 2006. The ICU stay was for over a week and then I was shifted to ward. By this time they had tried out all available antibiotics and perhaps given me up. Drugs were frequently changed and then completely stopped. For the first time the thought of death seriously crossed my mind. I mentioned this to my husband; he could only hold me in embrace to console me. Then I began to have problems with breathing even though I was oxygen. Very loud noise could be heard each time I inhaled or exhaled. I could not even lie down and had to doze off for short durations while sitting and my head rested on a table. I was very tired. To help matters they fitted me with a Blow PAP (also called mini ventilator) and administered Lasik injections. The two gave relief but I still could not lie down. Tiredness was growing by the minute.

The stay was now to shuttle between ICU and the ward. On 7th November, 2006 I was in room 1313. At 0530 in the morning I heard the tea trolley being rolled in the far end of the corridor. I asked my husband to bring the tea. As he poured   it in the cup I had my last good look of him and the world. I drank the tea and had a biscuit and then broke into hallucinations. First I bade goodbye to my grand-daughter and tried to mimic her style of saying Bye, repeatedly, I was not aware that I was calling all this loudly. In between I did speak to the nurses and my husband but I was not sure of it. The doctor had pronounced that I may live for another 2-3 hours- my husband was aghast. He called up my daughter and son. Both appeared by the bed-side soon after. I thought that my father (who had died in 1985) had come to take me away, I began to call him loudly, almost pleased that he was there.

I became aware of the fact that I was being shifted again, was it to ICU again? I tried to reason with my self.

Then next wakefulness came about and I saw myself in room next to ICU where I had seen people being wheeled in to die. The relatives were allowed freely to visit and there were no bars. I had my husband wiping my forehead and children, including son in law and daughter in law massaging my hands and feet. I had the Blow PAP on and I could not speak, I tried to say my farewell through gestures. I became aware that all the relatives were filing past me in ones and twos, an honourable end I thought to my self. I was fighting hard to breathe and had to be helped in recline and sitting position alternately. This tired me thoroughly and I slumped to the bed, for the first time I was supine and from now on I was not caring about any thing- not even breathing and let the Blow PAP do whatever it could.

All instruments rigged to my body gradually began to show deteriorating readings. The readings of B.P., heart rate, oxygen content and so on were erratic and falling. I opened my eye for one last time and saw my husband, that was the last I saw the world. The B.P. had fallen to 90/60 and the nurse resorted to manual check. The various readings on the automatic machine were already a straight line - not able to read actual status. Outwardly, I had taken my last breath and let it out as my body finally slumped.

 My Death Certificate, issued by the Medical Officer, Fortis Hospital, Noida stated the cause of death to be "Refractory Hypotension with Respiratory failure" with underlying cause as Metastatic Carcinoma Breast. It was dated 9th November, 2006. Time was 1523 Hrs. The scene of my passing away was witnessed by my husband, daughter and son in law, son and daughter in law amongst other medical staff. The process had been rendered painless and after a while of fighting for the last breath, I simply sank away from life.

Comments

  • teachersally8467
    teachersally8467 Member Posts: 4
    edited May 2011
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    Im weeping while reading this article...i saw my mom's path the same as with this woman. they had the same stages that went through...mama never agreed to have a respirator at the ICU. She died 12 April 2011 at the Philippine General Hospital at the age of 67 after 8 years living with cancer. She is survived by her spouse David, 68, children Deza, 32; Jesse 31; Jill 30, and Terence 26. She was buried 30 April 2011 in our home province, Antique, Philippines. She was given Necrological Services on April 12 for her great services as a Science Teacher and a Catholic Pastoral Council Chairman