The Lady who killed a Crab

(Sobhanacharitham Onnam Khandam)

Amma wins her battle against cancer, at last. 1.5 years of distress ends (at least transiently). Thanks to God, Dr. V. P. Gangadharan and his Team at Lakeshore (hugs to Dr. Anupama ma’am, high-five with Dr. Arun Sir).

I still remember the moment when Amma rang me up and said, ‘’Da the report says M Band present…is that something to worry about?”. I said with all the courage left, “No Amma, nothing serious.” The diagnosis of Multiple Myeloma changed the entire course of our life.  What followed was a marathon of agony and depression. Being a doctor, being a son, being a bystander…never before had I struggled so much. Amma was determined to fight this crab off her body. She learned the A to Z of her disease; nothing could be hidden or manipulated. But she did ask me a couple of times, “Da will I live long enough to watch you grow? I don’t want to die before your marriage.” I would joke, “Kollam, avasanam thonnooru vayasuvare okke jeevichirunnu menakkedavallu” (Great. You’d live long, better don’t make it over 90 or 100!!!). The real answer however was, ‘I don’t know amma’.

She is one hell of a fighter. When the doctor drilled her bones and asked, “Does it hurt too much?” she said, “No, it is okay”. At times when I miserably failed and reached the nadir of depression, she’d try sitting up, pat my head and say, “Illeda, enikkonnum pattilla. Nee dhairyamai iri” (Don’t worry dear, I’ll be alright).

Achan was a silent listener. He never talked with doctors or asked doubts. Behind his mask of iron will and courage, he was just a child weeping all the time. He would ask me secretly, whether things went well. Sometimes I said ‘yes’, at other times ‘no’. He was in charge of Amma all the time; I have barely seen him sleep adequately during the past two years. He took charge of the kitchen; never let me hire a home nurse. During stays at the hospital he would always ignore the expensive hospital canteen for himself, but never let me or Amma do that.

The initial days following diagnosis were the worst. I repeatedly cursed the physician who misdiagnosed Amma’s illness, for not having taken a simple plain X-ray that would have allowed an early diagnosis. I would stay inside the hospital room with my parents, I would then get a phone call. I would sneak out of the room, start explaining Amma’s condition like a recorded message to the caller. By the time the call ended, my face would be wet, eyes red. Then I would walk searching for tap water, clear my nose, face and return to the room as if nothing happened. Nightmares became a part of my life. So often did I see my Amma lying motionless in dreams that I finally began to fear falling asleep.

Bad news kept on walking in at every point of treatment. The orthopaedist referred her to the Dept. of Oncology, Medical College. I hoped that the Pathologist would confirm it to be a cancer in its initial stage. But things were always bad. Radiological studies and pathology reports revealed that had we delayed further Amma would’ve lost the power of her legs. My Aunt, a Radiotherapist, rushed to do what was required to prevent a vertebral compression. Chemotherapy was initiated as per the latest guidelines after discussion with the Regional Cancer Centre Trivandrum (RCC). But none of those drugs worked, her myeloma remained resistant. The result of every serial bone marrow study turned out to be painful.

Days of admission at the Medical College were tiring and stressful. The diagnosis, admission at the pay ward, doses of radiation, initial confusion...all of these happened while I was doing my internship. I would run panting like a dog searching for wheel chairs, fight and shout at Nurses-in-charge for securing bone marrow biopsy sets (strange but true). There were times when I hid my stethoscope inside my pocket to avoid insulting it; for I would be pushing a handicapped wheel chair through the verandas, drenched in sweat. Sometimes we had to run through extra floors when one of the usual lifts were damaged or jammed (often done purposefully by lazy operators). I realised how tough it was for normal people (meaning who don’t work at that hospital as Doctors) to stay at the medical college as  patients or bystanders. There were hardly two nurses for two three floors of pay wards. 

The RCC was no different. I climbed stairs up and down, ran hither and thither between labs. There were instances when various labs even mixed up results. These would have gone unnoticed if I was not a part of the medical fraternity. To err, definitely, is human. A lot of unnecessary and unwarranted confusions that drove in at the most unexpected times made matters worse. 

Amma’s condition worsened despite an initial breeze of hope. The imported-much touted revolutionary drugs (such as Velcade) admitted their failure in Amma’s case. The expert Oncologist who supervised my Amma's treatment explained to me a poor prognosis. I was shattered. He said it was time to switch to a new regimen, but the chances for a positive response are low. A question that he asked afterwards electrocuted my brain, “How is the patient related to you?” May be his patient load was too high for him to remember that it was my mother. I was not confident to leave my Amma’s life in his hands anymore. Moreover, when you hear that your mother doesn’t have much time left, your neuronal circuits go haywire. 

All of sudden, as if God sent, a relative of mine who had been out of touch with our family for ages made a casual visit and on learning about all that is going on he asked why don't we try a second opinion. He helped us to get an appointment with Dr. V. P. Gangadharan, and rushed to Tripunithura, Cochin. He flipped through the reports. After minutes of thought he broke the silence. “Nithin. The disease doesn’t have a complete cure, as you already know. But bring her, we’ll try all that we can." My Aunt, who was  still her treating physician, still clung on to the decisions of RCC.  I had to defy her. It was a tough call but I did not have a choice. 

I didn’t wait any further and got Amma admitted at Lakeshore Hospital, Cochin. Reassessment was done. I did expect a miracle in the biopsy report. ‘Bone marrow report will only be revealed tomorrow’, said the nurse. I grew impatient and used my contacts to know what the result was (Dr. Maya ma’am who had taught me Paediatrics at Medical College Trivandrum is currently doing her DNB in Gastroenterology at this hospital). What I heard was grave. Amma and Achan were eagerly waiting at the room in Oncology ward, the fifth floor of the building.   I climbed down the stairs, walked to the car parking lot, moved to a dark corner and cried like an infant. I checked a mirror thrice to see if my face was clear, and walked back to the room and said results are not ready yet.

Amma surprised me again when she calmly took the news (was terribly depressed though) from Dr. Arun. Dr. V. P Gangadharan (I’ll say Dr.VPG from now on) took control of her mind very well afterwards. The counselling he gave had a mesmerising effect. He smoothly eased the tension that we had. Never did he give us any false hopes. For the first time in my life I saw a new side of medical practice, something that was beyond textbooks. The three of us did not have any tension about the disease afterwards. Even Amma’s diabetes and hypertension came under control. All that was left to be taken care of were the finances. With more than forty lakhs of rupees converted to medications and investigations, things were never good. We lacked any kind of health insurance coverage.

I actively entered clinical duties at a local hospital at Kollam and worked for more than 16 hours per day. Felt sad initially, since most of my pals were working hard at post graduate entrance coaching institutes. I missed the chance; skipped many of the examinations that I had registered for. But soon my concepts about life changed. I began to enjoy clinical practice to the utmost. Let me not expand this part of the story at this point of time and space (for it is cumbersome).

Months rolled on. The new drug regimen (different from what the RCC recommended) was physically energy consuming. Amma lost her hair (tiny news for me, but more painful than biopsies for Amma. Her previous medications did not have this side effect). One of the medications was to be infused continuously for four days through her veins. Meaning she had to confine herself to bed all the time (yeah, Amma was much better, could walk on her own, could do her personal stuffs all by herself this time). One of her peripheral veins (the ones in her hands) was literally burnt by the medications! This forced the Doctors to stab her neck (well, medically it’s called placing Central Venous Lines, i.e. using veins in the neck. Fewer side effects). By the end of six cycles of the new regimen, her biopsy yielded clean reports. She was almost free of cancer and it was time for the silver bullet, an autologous stem cell transplantation that would gift Amma a long disease free period.

Despite the costs, the difficulty and risks involved, we were all happy to accept the final part of the treatment. Amma, Achan and two staffs were sequestered in the highly sterile Bone Marrow Transplantation (BMT) room. They could never walk out of the room; newspaper, magazines and TV soaps like ‘Kumkumapoovu’ let them cope with stress!!! Stem cell transplantation is a process that technically replaces your immune system with a healthier one. The rejuvenating procedure involves risks such as fatal infections, since during the period of treatment the patient’s immunity would be near zero. I shuttled between hospital verandas and a relative’s house at Tripunithura, Ernakulam. I spent most of the time at the hospital reception or in front of the BMT room, reading a copy of ‘The Immortal Life of Henrietta Lacks’.

Arranging people for blood donation was difficult. Amma’s blood group was O negative. Blood is collected using a process called apheresis, different from the normal donation technique. This one takes more than an hour, requires healthier donors with prominent veins! Amma’s blood counts frequently crashed dangerously, requiring frequent transfusions. Timely help from a couple of pals and relatives eased the difficulty. One of the first donors was my own classmate, Manu Vincent. I also happened to meet a number of good souls who were willing to travel long, keeping aside their own commitments. The 51 years old professor of Economics (Dr. Ajith Kumar) who donated blood for an eighty second time in his life was the biggest awe-factor during the week.

Blood Counts stabilised by the fourteenth day. She was shifted out of the ‘dark room’ (that's how she described it!) yesterday. My heart is lighter these days. Breathes fine. Feeling happy. Now I’ll have to deal with my other self. She was always there at the other side with her phone’s receiver, listening to me. Situations never permitted her to be with me in person throughout.

I wonder how long this happiness will last. Cancer is one villainous rascal who can spread its fangs anytime and return with vengeance. The Emperor of all Maladies has however been defeated by Amma, for now, or maybe forever. There were moments that made me believe in fate, in God (once again), and in the goodness of humanity. Responsibility, which was a heavy burden on my shoulders, now became a strange kind of fun. I rediscovered myself.

The ‘Sobhana, 56 years old patient, stage 3 Multiple Myeloma’ tag has anyway finally lost most of its validity.

Image courtesy: https://supermomdecoded.files.wordpress.com/2012/01/superwoman-blog-illustration3.jpg