Tuesday, January 27, 2009

Post 6. You've Got Friend

Looking back, I realize that in my battle with the killer disease, my side had a stronger force lined up. From the moment the news got out that my condition was dicey, we knew we were not alone. Siblings, cousins, nieces and nephews, elders in the family, colleagues and friends enlisted themselves voluntarily on our side of the battle line. And the number kept multiplying. We were inundated with telephone calls – from all parts of the country and the world. Though the omnipresent enemy performing his dance of death continued to cast his eerie shadow on us, he was kept at bay by the hands of my comrades–in-arms, extended in gestures of solidarity.

I can never forget the day I landed in the Nedumbaserry airport in Kochi to start the treatment. As I was wheeled out of the airport, I saw my all our siblings - both Sunny’s and mine- who were in India waiting to receive us. Spontaneously, I waved out to them animatedly, and only then remembered that it was not a happy occasion that had brought them all there together to receive me. I told myself I should behave, but try as I did, I simply could not put a lid on my excitement. What I was I so happy about? The meaning of their presence there? Or was it that I was just happy to be alive to be at the receiving end of all that affection? I do not know. But one thing I knew for sure. My God was with me.

Difficult days followed my arrival in Kochi. Chemotherapy was everything I had feared it would be. But the ordeal was not mine alone. Looking back I’m amazed at how so many people threw themselves into this mission of helping me tide over this terrible crisis.

Sometimes well meaning friends tell me I should put those traumatic days behind me, and look ahead. But how can I do that? The twelve months that followed the diagnosis was a period in which the film fell from my eyes and I soldiered on through traumatic but apocalyptical days to arrive at the beautiful truth that no enemy can overcome us if Man and God gang up together.

But there were some few rare moments that I’d like to put behind me forever - moments when the horror stories I’d heard about the disease which afflicted me would surge up from some hidden regions of my mind and topple my mental equilibrium. At other times, images of the ravages that this disease can inflict on the helpless human being- images which I had personally witnessed- appeared out of nowhere and lingered menacingly before the mind’s eye. Those were terrible dark moments when a pall of gloom would shroud me and a heaviness seemed to settle physically in the chest cavity, almost choking me. The intensity of the feeling would soon diminish but its fall out was a feeling of withdrawal from life, a suspension of that sense of belonging to the stream of life flowing around me. The people with whom I interacted – even my close ones – would then seem to inhabit a world that was no longer mine – or would not be for long. Believe me, those were moments of utter loneliness when I felt no one could reach me.

It was in one such moment that my brother came to tell me that his son, my nephew was releasing a music CD that he had composed and that he wanted me to be the first customer. He asked me to get ready for the small function that that was to be organized in my sister-n-law’s house where I was during the period of treatment.
‘You’d better hurry”, I told him. “My hair has started falling”.
“So what”, butted in my young nephew Sunil. “It’ll come back”. He said it casually, as though I was making much do about nothing. Sunil’s conviction about a return to normalcy, and the dismissive tone in which he referred to my illness had the impact of lightening that heaviness in my chest.
Strange, how that little episode blew away the oppressive dark mood. With all the excitement about and preparation for the CD release rituals, I was, without my realising it, abruptly yanked back to the life I had begun to lose grip over.
The mind does not always obey us. It sometimes strays into areas around which we would, if possible, have put an electric fencing. But I am glad that these desolate areas are generously spotted with oases in which the truant mind can dwell, forgetting the arid misery that surrounded these cool regions. Heart warming memories inhabit these oases. Not great heroic deeds that call for Homeric similies to describe them; but their impact on me lies beyond words and they leave me speechless with gratitutde - - -

Like my husband’s sisters whose kept aside the normal routine of their lives during the entire period of the chemo cycles!

Or my siblings who were always around to accompany us to the hospital , doc’s house - -

Or My daughter arriving from the US like a santa with suitcases fill of food supplements to fortifiy me against the disease, or going down on all fours to scrub and clean and carve out a super sterilised space for me.

Or my son rushing down funds even without asking us whether we needed it.

“Have dates and six pieces of cashew nuts daily. It’s a tested and tried diet to sustain normal blood count”. That was the then Manager of the College where I worked, a priest whose rough and tough exterior scarcely revealed his real nature. His call came while I was hospitalized for neutropenia management. I was touched, to say the least.

“Take this daily”, said my younger brother, handing over a tin of Amway’s food supplement. He earnestly pointed out how one of our relatives who was afflicted by cancer a decade ago was still around, despite the prognosis which gave her not more than a year.

“Miss, I just wanted to hear your voice. Take it easy. You’ll be fine. This is part of life”. My lawyer friend from Changanasserry.

“Amma, will you loose your hair?”. My son from far away. Helpless. Miserable. Unable to make an effort to sound normal. It was my turn to sound frivolous “Yeah yeah. You know I always wanted to chop off my hair, but never had the guts”. I didn’t fool him any. “It’s Ok, so long as you are OK”. There was something in his voice which told me he was not OK.

Tender coconut water was the only thing I could stomach in those terrible days when my whole system was revolting against the fumes of chemo. My sister-in-law’s husband used to pick them up every day whenever he saw them while driving, in order to ensure that the shortage in our nearby market did not hit me –with the result that at one point, there were enough tender coconuts in the house to start a business.

It warms my heart when I think of my son-in-law, who had come down from the US, bringing his aged parents from Mumbai and spending a whole day with me in the room of the Ladies Hostel where I stayed during the radiation treatment, taking special permission from the sisters who managed the hostel.

A painting of Mother Mary on my wall takes me back to a day in the week before the chemotherapy treatment began. Three colleagues, all retired, pleaded to be allowed to come. I agreed, but reluctantly ‘cos I had some hang-up about being seen in my handicapped condition. After the bone surgery, I moved about – hopped about would be more correct- with the help of a walker. But the minute I saw them, I was glad they came. Not just glad - immensely happy. Suddenly we were talking of the good old days, of politics, movies – like the old times. And the disease and impending chemotherapy seemed not formidable enough to cast a shadow on me. One of them had painted that picture for me, framed it and brought that bulky piece all the way from Trivandrum. It now adorns a wall in my house, a sweet reminder that the beauty of friendship and camaraderie that we tend to take for granted most of the time.

Technology also did its part in brightening up those days. Not a day began or ended without good morning and good night text messages from Chinny, my friend and colleague from Mavelikara. She knew the dates when chemo had to be administered and send messages most appropriate to the occasion. And most of them were uproariously funny that they had the instant effect of making the world look a better place!

And then there was my brother in the USA, whom we refer to in jest as DR.Pal on account of his encyclopaedic knowledge about diseases, medicines, alternate treatments, health diet, food supplements, the works. He spent days browsing the net for information on my type of carcinoma, downloaded information regarding the success stories of certain food supplements and dietary habits in combating cancer, and consolidated, edited and sent the matter to me as attachment. He was not the only one. My niece from the US emailed a few downloads of blogs of people with complaints similar to mine, who worked their way back to normal life. Reading these material did a whale of a lot of good to me. I began to gain confidence that with a change in life style, I’d come out of it.

The room in the ladies hostel near the hospital where I underwent radiotherapy never ever looked like that of a patient suffering from cancer. Sally, my colleague kept me company during most of the 2 months I spent there. When she had business of her own to attend to, three other colleagues,Annakutty,Rosemary and Teresa or my sister- in- law maymol took over. No matter who was with me, we had a thumping time.

I sometimes wonder why people were so good to me. Like that song goes
Somewhere in my youth or childhood,
I must have done something good,
Cos nothing comes from nothing,
Nothing ever does.

But , for the life of me, I cannot remember that good deed I had done – if I did-which explains my husband’s and our siblings, or Sr. Geo Maria, my former principal’s or Sally’s or Teresa’s or Rosemole’s or Annakutty's determined efforts not to surrender me to the foe.

Yes, not a day passes without me trying to figure out what I had done to deserve so much affection from so many people. During the course of my treatment, I had occasion to meet a lot of patients and listen to the heart breaking stories of isolation during this traumatic period, of the unbearable misery rising from the absence of people to extend that hand of support, or shortage of funds to carry on the expensive treatment..

Yes. My comrade-in-arms got their act together. They were determined that I pull my self through the great trial. And I felt I owed it to them to do that.

Never, never shall I take their solidarity for granted. I consider myself singularly blessed, for, I have seen the dreadful anguish of those who were not so lucky.

Monday, January 12, 2009

Post 5. Dr. Saji Joseph

The medical investigations comprising a comprehensive blood work had showed nothing to indicate malignancy. So the orthopedic doctor whom we consulted in Chennai suggested a needle biopsy of the lesion in the iliac bone. He himself performed the procedure. During the three agonizing days of wait before the results, Sunny had fallen quiet. Those days in Chennai where the first lap of investigation took place, were like a nightmare in which the two of us moved like zombies, as though taken by some unseen, unknown force from the guest house to hospitals, from one department to another, from hospitals to diagnostic centers and the back again to the guest house. Our peaceful, normal life which we had just left behind seemed like an unreal dream.

“I hope God will give us the strength to carry the cross he gives us”, said Sunny in a deadly quiet tone. The words reverberate in my ears even now as I write, and the expression on his face as he uttered those words is one I would never like to see again.

The needle biopsy result came. No malignancy, no bone TB. Possible Paget’s disease. We celebrated. Any disease was welcome – any disease other than cancer. We went to the Shrine of Our Lady of Velankanni in Chennai and offered thanks giving Mass. Back in the guest house after the mass, we were in a lighthearted mood, called up friends and relatives who were anxiously waiting for the biopsy result, spoke to them with great levity, trivializing the collective anxiety that had held us in its grip. We spoke to our children who were in the US about the agonizing story of the previous two weeks, which ultimately had a happy ending.

The next day, we had an appointment with the ortho doc in order to decide on the treatment for Paget's disease. The doctor’s behaviour unsettled us. He asked us to go for a second opinion. What caused him to change his mind overnight was a mystery, but he had taken the slides from us to be reviewed. He assured us that there was nothing different in the review from the first pathology report. Nevertheless, he wanted us to go for a second opinion.

Back to square one, again. Back in the guest house, we sat before the TV with unseeing eyes, wondering “what next?’. With a bleeding heart, I asked my God what either of us had done to deserve this terrible torment. Just then, like a bolt from the blue, Dr. Saji Joseph’s name thrust itself into my troubled mind and I gave him a ring immediately. He was my cousin’s husband, an orthopedic doctor in St. John’s hospital in Bangalore, known for his diagnostic skill and humane approach to the patients. He listened to me and said
“Molly chechi, take the earliest flight and come here. I’d like to see you”
Hoping against hope, I asked,”Is Paget’s disease that serious”.
He spoke quietly, gently. “I don’t think this is Paget’s disease. That’s why I’d like to see you.”

Like they say, it takes all sorts to make the world. And it takes all sorts of doctors to make this body of medical practitioners. I have learnt from my experience with them that most of them are competent in their trade. In fact, competence is not a rare commodity. But the quality that Dr. Saji has, what Dr. Ganadhaan has, is indeed a rare thing to find among them. That sensitivity to the traumatic condition of the patients and their dear ones, that compassion and the delicacy with which they handle the patients – these indeed are the rarest of commodities. After speaking to Saji, I suddenly felt that, despite my anxiety and fear, everything will be taken care of.

It was Dr. Saji who took a firm decision regarding the course of investigation, a timely decision for which I will be eternally grateful to him. Blood work was repeated and the biopsy result reviewed once we reached St.John’s Medical College hospital. Nothing alarming was found. Everything appeared normal. Sunny and I were happy. So was Dr. Saji when we went to him with the repeated test results and the reviewed biopsy report.

“I would like an open biopsy to be done”, Saji said.
“But why?” I blurted out. “Everything is normal. Isn’t open biopsy a major surgery?”
“Yes. But let us open and confirm that nothing is wrong, that the problem is a benign one, or something you had from birth. But I insist on an open biopsy”.

The implication of his words was not lost on us, but strangely enough, we were not shattered. The thought that Saji was the surgeon who is to do the open biopsy made all the difference. He explained the procedure to us, answered our numerous questions with infinite patience.

True, the Almighty chose to give us a heavy cross, but as Sunny prayed, gave us strength too, in the form of these two doctors and all our near and dear ones, and in the form of a deep faith in the power of the Divine physician to heal.

Thursday, January 8, 2009

Post 4. EUREKA!

It was my sister-in-law Annu who first used the word ‘Eureka’ to describe my reaction as I came out of the radiology lab of the Medical College Hospital, that courtroom which sealed my fate, which once and for all allayed all doubts and hopes that the disease that had afflicted me was a benign, harmless one.

After the tumour in the iliac bone was diagnosed as a secondary, specialists invaded our room. I was put through every possible test to locate the original site of those rogue cells, one of which took it upon itself to travel all the way to the ilium and start a colony there. For two days, the investigation yielded no results. That’s when we first heard the term ‘occult’ – a term used to refer to a condition when the primary location remains unknown. I must say whoever does the naming ceremony for these awful disease related features has a weird sense of humour. Occult! Why drag the spooky aspect of the supernatural into this already horrible world of cancer?

The Surgeon, Dr. Sridhar, came to examine me. He claimed that he’d detected something suspicious in the breast. No way, I told him (by then, my infinite patience was metamorphosing into finite). The mammogram had showed negative result, I told him.

“It shall be reviewed”, he declared quietly, confidently.

For some reason, that little devil started niggling at me again.

“What have you detected that the machines couldn’t?” Cheeky, I knew, but I had been dealt a death blow by life, and these little liberties taken by the dead man walking are often condoned. The doctor could see that I was overwrought, and excusably so. He later turned out to be our regular visitor while we were there in the Medical College Hospital.

Holding up his hands as though in prayer he said with a twinkle in his eyes, “The surgeon’s hands!” Then, more seriously, “Never underrate clinical examination. I’m sure I am right.”

But I was worried. What if the review did not support his finding. By then Sunny had done his homework on the implications of the occult primary. They were really scary. If one were destined to be afflicted by this diseace, I told myself, the least one can ask is have it in a known, locatable site.

In the meanwhile, the news had got around in our family and friends’ circle that the primary cancer was indulging in a hide-and seek game. Panic spread. We live in days when one can get a low down on any condition at the tap of a few keys, and we guessed many a pair of hands were working overtime at the keyboards. The land phone and the mobile rang incessantly. I took very few calls as I was a little groggy after the bone surgery. But I found it a good pastime, trying to figure out the other end of the conversation while I listened to our end as Sunny or Annu answered the phone.

My daughter called during this time. Apparently, she was very persuasive about some test, for I heard Sunny telling her repeatedly that a doctor had to prescribe it. She wanted a brain scan done, Sunny told me later. “Please papa, do it for me. Tell the doctor I want it to be done”, she’d been pleading. But generally, the truant primary remained an unspoken issue, though it lurked menacingly in every telephone conversation from those who called to show their solidarity in those awful moments the three of us waited fearfully, as though for an impending catastrophe.

In accordance with Dr. Sridhar’s instructions, the Radiology Department gave me appointment for the next day for the review of the mammogram. I prayed that the surgeon’s observation be true. More than the usual number of doctors seemed to be there in the radiology lab. I waited anxiously while the ultra sound scan was in progress. All eyes were glued to the monitor and then, suddenly, the probe stopped for a moment at a spot. A doctor who stood by me pointed her finger in the direction of the monitor. I twisted my head around to get a glimpse of the monitor. Nothing I saw there briefly made any sense but everybody was talking all on a sudden. The probe kept moving over the same zeroed in point.

“That’s it”, some one said.
They looked at me and away quickly. I guessed they didn’t want to announce the discovery of a malignant tumour in my presence.
But I wouldn’t be left out.
“Did you find it?” I asked eagerly. “Did you find the primary? You can tell me. I can take it”.
“Looks like we have”.

I could have jumped with joy had I not been debilitated by the post -operative condition. But some of that excitement must have seeped through on to my face as I was wheeled into the large lobby outside the radiology lab, where I found Annu waiting, looking very anxious. I grinned at her and told her happily, “They ‘ve found it. Dr. Sridhar was right. They’ve found the primary”

She stared at me utter disbelief. Half smiling and half flabbergast, she remarked that I sounded like Archmedes after he discovered the law of buoyancy. Just then, Sunny walked up to us and I blurted out the same thing in the same manner.

It was his turn to look stunned. “You look and sound thrilled”, he said incredulously.

I wondered why it did not strike either of them that the known devil is any day better than the unknown.

Tuesday, January 6, 2009

Post 3. Spine Chilling Name - 2/ Doctors' Jargon

It is with some reluctance that I look back at those early days when the suspicion dawned on us – my husband Sunny and me – that there was something seriously amiss. We went from genaralists to specialists, in three metros, walked up and down the corridors of big hospitals and medical colleges, hoping against hope that the lesion would be a benign one, or something I had from birth but which had started giving trouble with age and over weight. What can I say about our state of mind in those days? With the terrifying prospect of cancer looming oppressively large ahead, my mind seemed both numb and overactive at once. Uncontrolled thoughts violated every rule of chronology, and back and forth they traveled leaving behind a trail of emotions. Misty images or moments of dark, intense, unbearable anxiety or choking memories took turns to intrude into my mind with a frequency that left little space there for any peace and calm.

But the mind never gave up its efforts to grope its way back to normalcy. Coming out of the little chapel of MMM hospital where human beings prayed with bleeding hearts irrespective of their faiths, Sunny and I exchanged philosophical clichés. I even went into the small internet café there, sent a couple of normal sounding mails to my children and then posted a new blog in which I sought to clarify a few statements in my previous post on the Shipa Shetty-Big Brother reality show which had angered my blog visitors.

But the wait! First for the completion of the bone scan procedure. Then for the report. In all, it took eight hours.

Guess this is how it feels, waiting for the executioner’s axe.

But it is strange, really strange how, even in the face of a grave danger that stares menacingly at you, the mind sometimes gets caught up in irrelevant trivia. For it was then, sitting there in the lobby of MMM hospital waiting for the bone scan report, that I made a totally insignificant discovery, that there was at the disposal of the entire medical fraternity, at all levels, a carefully evolved, euphemistic language register, to refer to/deal with cancer. Some doctors, however, always try to hedge away from the issue, despite the easy availability of these polite, meaningless jargons. This had never failed to tickle me and I, in spite of the horror that filled me, never let go of a chance to tip that delicate balance of the euphemistic tight rope walking they indulged in. May be, that was my way of taking my mind away from the bitterness over my fate. What the heck! Cancer or not, I too have some right to a little fun.
“Have a complete bone scan done tomorrow itself”, said the Specialist, avoiding our eyes.
“What do you suspect, Doctor? ”. That was Sunny, looking as though his world was crumbling around him.
“Let’s see”. The Doctor was seemingly in a hurry to move on to the next patient, a pretext to escape having to answer any more uncomfortable questions.
That little devil which always chooses tickle me at the most inappropriate moments started niggling at me and out popped the question, to even my own surprise.
“Is it malignancy?”
The doctor’s expression was a picture for study. The word was out! Those shadows that had been doing their weird dance around the three of us vanished abruptly at the unexpected entry of that spine- chiller, and in their place emerged, out of the blue, a new horrid, tangible shape which could not but be confronted. The Doctor looked at me in utter consternation and then,
“We’ll have to rule it out”.
Fast recovery, that, I thought. Words. The right combination of words had bailed him out. Once more he dodged that dreaded intruder!. For, he knew, right from the moment he saw the scans, that mine was a case of mets. He had that sharp medical acumen that one associates with a good doctor. He was a brilliant doctor.

I do not blame them for the verbal juggle that’s part of that unpleasant and unhappy portion of their profession. It’s no easy task to tell a patient that she has a potentially fatal disease. “The disease is not immediately life threatening” was how an oncologist put it. I had I consulted him as soon as the disease got that dreaded label attached to it. The whole range of possibilities thrown up by the epithet ‘immediately’ did not help much. And then, there was this other Doctor from a giant metro who looked at my scan films and reports, and pronounced that ‘the horse has bolted, and you can take your own time locking the stable”, meaning, of course, that a couple of weeks’ delay in starting the treatment will not make much of a difference! Of course, we had been warned by the good soul who took us to this specialist that he was a wee bit outspoken, but was brilliant at diagnosis. Well, I agree with him - on both counts.

But a consultation that I would like to put out of my mind permanently is the one with a renowned doctor who looked at me with –well, how do I decode that dead pan expression in his eyes and in his level tone when he answered our anxious queries which were not really devoid of hope? Pity mingled with mild impatience? Controlled mild impatience that creeps into one’s tone when dealing with a person or an issue that is sure to go out of relevance in the immediate future? It was not a pleasant thing to see. Sunny and I came out of his room, each one wrapped in his own thoughts. My thoughts were revolving around my will which I had taken a spot decision to execute immediately.

I suppose the best decision we made was the choice of Dr. V.P. Gangadharan as the oncologist under whom I was to undergo treatment. Something tells me that if I am still around to tell this story, it is because of the Doctor. He assured us during our first consultation with him that “We’ll manage it”. There was no look of pity or that ill-concealed effort at tolerance when he answered our queries. Nor was there a laboured joviality for the benefit of the patient. Here was a person who considered it his hyppocratean duty to use his professional skills to give a patient a fighting chance of survival – and the patient was one in whom the disease had disseminated into the secondary stage.

And this is what a patient asks for.

Friday, January 2, 2009

Post 2. Spine Chilling Name - I

A disease with a spine chilling name, was how I described it to Margarida and Tulsi, my colleagues back in Mumbai, who were the only two people I informed at that stage when a lesion in my iliac bone was being investigated to “rule out malignancy”. I had sent them a common email from Hyderabad. That was my way of dealing with this not exactly a happy situation. I had to be brutally honest with myself, for specialists and pathologists had hinted at the strong possibility of Solitary Myloma or a Metastasis . The first was a manageable condition while the latter, well, not really an enviable one!

I had always found that the most effective way of dealing with the brutal realities of life was to step out of the tricky situation for a moment and look at it from the outside. Sometimes such a perspective yields unexpectedly humourous results. It was in one such moment that the spine chilling nature of the term struck me. And I dashed out an email to my friends, who were not deceived by the levity of the tone.

They called me immediately. I could 'hear' their shock and distress in the heavy silences during the telephone conversation. Then they fell silent for a few days. They, too, I knew, were trying to deal with the situation. And their way, I came to know later, was even more interesting. Together they browsed through every available site on lesion in the iliac bone, and long before the pathology reports came, my friends had arrived at the diagnosis - and a perfect one at that! After they made their diagnosis they called! By then, the pathology department had already confirmed that it was a “mets”. The search for the primary was on with a vengeance. Chin up, Molly, my friends hified over the phone. They told me where the primary was. It made me smile. The statistics are very encouraging, they assured me. These are days when Cancer need not necessarily be a spine chilling name, most certainly not in these days of sophisticated treatment, they told me.

I love them for that call!

Cancer is like a snake bite. Doctors say that the sheer terror of having been bitten by a snake contributes substantially to deaths by snake bites. A person diagnosed with cancer instantly sees Death taking a definite shape before her eyes. True, Death is a certainty in life that always hovers menacingly around in the periphery of our consciousness, but, thankfully, in an amorphous form. But once Death acquires a definite shape and a form, the afflicted person realizes that it holds no more terrors for her. She then faces the truth that it is not Death but Life that crushes her, brings tears to her eyes when no one is there to see. Those closest to her heart haunt her waking and sleeping hours. She consoles herself with age old adages about no one being indispensable. Struggles to convince herself about that great truth of life but fails miserably. She thinks with anxiety of the tasks yet to be performed, and meticulously charts out in her mind ways of getting them done, even after her time. Emotions swell and submerge her. Yes, it is Life that a cancer patient cannot deal with, the life that she doesn’t want to leave behind – and not death.