IN THE COURT OF THE EMPEROR OF ALL MALADIES : My encounter with breast cancer

The word cancer is everywhere these days. To borrow from P.G. Wodehouse, you cannot throw a brick without it landing on someone who has either had cancer or knows somebody who has. But when this Emperor touches your person with his sceptre, the word becomes more potent; it becomes non-negotiable.

This June, I completed one year cancer free - far from being in remission, but definitely a milestone to celebrate. I remember the morning I felt the lump on my breast. They tell you that cancer is a stealthy foe. In my case, it was not so. I had fair warning. For a while before the lump appeared, I would see a grotesque carbuncle-like mass that seemed to be kind of bubbling and growing whenever I closed my eyes in meditation. Only I did not interpret the warning correctly! The moment I mentioned the lump to my husband and daughter who was visiting for the summer, they called Dr. Lalita Badhwar, the Gynaecologist who had operated on me several years ago to remove my uterus and ovaries because they were pre-cancerous, to make an appointment. She suggested that we not waste any time and go straight to Dr. Harit Chaturvedi, Surgical Oncologist, at Max Hospital. From that moment on, I was on autopilot. In his clinic, I remember Dr. Chaturvedi saying that he was 99.9 per cent sure that it was cancer but asked for a Fine Needle Aspiration Cytology (FNAC), and several other tests to be done immediately. “Oh God, not again!” Just a couple of years ago I had contracted encephalitis, nearly died, and lost almost all my memory. I couldn’t put my family, but mainly my husband, through such torment twice in such quick succession!

The FNAC report confirmed that it was stage II A cancer of grade III. The cell expression rate was rather high which meant that it was an aggressive cancer. Dr. Chaturvedi fixed the date for a mastectomy, discussed my options, and explained the procedure to me. I had never thought that I would be an amputee one day. But it was not all doom and gloom. There were several lighter moments as well. For the bone scan, I was injected with a dye and asked to return after three hours. I decided to use this time to visit my parents and break the news to them. When I returned, the reception area was completely empty but I was told I had to wait in a jam packed inside area. “You can’t be here Ma’am, you are radioactive because of the injection so you can only be near other patients.” Baffling on so many levels, and I am thinking NOW you tell me!

After the mastectomy during which 22 lymph nodes had to be removed as well, a physiotherapist came to teach me the exercises I would need to do to prevent lymphedema and to brief me on future care of the arm. One of her cautionary notes was never to get mosquito bites on the arm. I asked her what I could do in case I did get bitten some time during the rest of my life. “Umm, just don’t get mosquito bites” was the sage counsel.

I was very lucky in getting really good doctors who were very open to questions and were willing to discuss even treatment options with me. However, you should take care to identify a doctor whom you feel comfortable with because he/she is going to be a very important person in your life from this moment on. After the second biopsy during surgery, the doctors decided that a FISH test was called for since the cancer turned out to be ER (estrogen) and PR (progesterone) negative.
 
Dr. Amish Vora, Medical Oncologist, who was going to be looking after me during further treatment, told me that the test had come back strongly positive for the HER2 gene. This meant 17 doses on a three weekly cycle – one whole year of chemotherapy and tests. Dr. Vora warned me that the treatment regimen was aggressive and would shoot my immunity to pieces. He suggested that I think of myself as a person with AIDS during this time. Along with other advice, he also cautioned me to chop off my hair the moment it started to fall and not wait for it to come off in clumps. The hair fell, and it fell very painfully – the roots hurt unbearably. Once it was all gone though, it was fun. I looked up different styles of wearing scarves on the internet and became quite adventurous with them. My husband would feel my bare skull with his hand and say, “Awww, you look like a Buddhist monk”. Each trial comes with its own gifts for sure!

You will learn a lot about yourself as well as the people in your life. You will get a lot of morbid curiosity, advice, and many “sure-fire” cures. Do not let it overwhelm you. If something seems worthwhile to you, definitely run it past your oncologist before you start following supplementary cures. 

Here are a few tips that I found helpful:
1. Write down your questions for your doctor before each appointment. In the early stages (right after diagnosis) have somebody accompany you to your appointments, and ask them to take notes. Even if you feel that you are calm, you will find that you are not able to recall all that was discussed.
 
2. Do your research, but trust your doctors – they are the ones who have dedicated their lives to learning about cancer and treating it. Experience has taught them what works and what does not.
 
3. Keep a diary of your daily symptoms between treatments. It will help you plan for the worst days in the cycle; and believe me, each cycle will have its trough!
 
4. Keep surgical gloves and Vaseline or some lubricant handy. On some days you might feel too weak to excrete and might have to finger extract the faeces.

5. Do not use any mouthwash with alcohol in it. Rinse your mouth with Betadine solution even if you have one mouthful to eat or drink. This will prevent mouth ulcers.

6. Use either an ultra soft toothbrush for brushing your teeth or, preferably, use a children’s one.

7. If you floss, use the unwaxed variety.

When to Call the Doctor:  
Immediately, if 
1. you have a fever of, or above, 100.5 degrees Fahrenheit, chills or uncontrolled shivering.  
Within 24 hours, if 
2. you have persistent pain anywhere.

3. you have swelling of ankles or legs.

4. you experience shortness of breath.

5. you have severe diarrhea and stomach pain, or constipation.

6. you have black or tarry stools, or blood in stools or urine.

7. you experience persistent burning/itching during urination or have a vaginal discharge.
 
8. you have severe nausea/vomiting and are getting dehydrated.
 
9. you have yellowing of skin or eyes.
 
10. you have sudden weight gain.

Ultimately, you cannot but admire the cloning skills of cancer. As Siddhartha Mukherjee says in The Emperor of All Maladies “In cancer, unbridled growth gives rise to generation upon generation of cells…Nearly every known cancer originates from one ancestral cell that…gives rise to limitless numbers of descendants”. Tough opponent it may be but remember that advances in medical science have phenomenally improved survival rates, and as my doctor said, if you are going to get cancer then breast cancer is the best one to have.

- A slightly abridged version was published in the October 2013 issue of Prevention, India Edition

Leadership

With the recent spate of mass movements in several countries, I started thinking about leadership.  Can leadership be learned?  Can it be taught?  The politically correct climate of today demands that we answer those questions resoundingly in the affirmative. The acceptance of the hypothesis that leadership is teachable would imply that each of us is capable of directing the efforts of other people effectively.

If we believe that everyone already has all of the traits necessary for leading, then we must acknowledge that there is a leader lurking within each of us. The emergence of this leader then becomes just a matter of recognizing this innate ability in each individual and giving it permission to flourish.  However, by doing so, we are surely diminishing the inherent capacity of people who have been leaders.

While individual narratives make for powerful case studies, they fail to highlight methods and traits of leadership that are replicable and proven time after time.  Nor can one point to a common, unifying principle that may be considered the holy grail of leadership.  “More than knowledge, leaders need character.  Values and ethics are vitally important”, says Oscar Arias Sanchez.  Think of Mother Teresa, Mahatma Gandhi, Martin Luther King Jr., Nelson Mandela, Sathya Sai Baba, and most recently, Anna Hazare.  Do all these people have something in common, and is that commonality of character, values and ethics?  Is it the capacity to love all, even “thy enemy”?  But then what about people like Adolf Hitler, Slobodan Milosevic and Pol Pot, who managed to lead people into committing horrible atrocities on other human beings.  Or people like Rajneesh and Warren Buffett who might have led people to “nirvana” and altruism respectively but certainly cannot claim to be as selfless as the likes of Mother Teresa.  Is it that leaders have consistency of belief?  That cannot be it, since most of us lesser beings end up being labelled stubborn for the trait.  Is it zeal for a cause that is larger than the self that creates a leader?  Not always – all of us know of zealots who have got consigned to the lunatic fringe for their strenuous efforts.

My quest began with searching within myself.  Do I have leadership qualities?  Isn’t it funny – the most natural response expected from me would be “of course I can lead”, but I found that my answer was no.  I am far more comfortable following.  This is not to say that I cannot think for myself; far from it!  I am not in the least afraid of forming my own opinion even if it is contrary to the flavour of the moment.  I am very resilient (the buzzword these days to highlight leadership qualities).  I am able to take charge and act when there is a crisis and something needs to be done.  I am also pretty good at adapting to changed circumstances.

But can leadership simply be about being open to, and exploiting, opportunities; understanding and maximising what we’re good at; or is it about selling an idea? What I do not possess is the ability to influence people. 

John C Maxwell defined a leader as “one who knows the way, goes the way, and shows the way”.   If your actions inspire others to believe in you, dream big, and do more, you are a leader.  Ideally, it should be for universal good.  Sadly, that is not always the case!  Sometimes the big dream can be as dangerous and vicious as ethnic cleansing.

Beware!

Politeness is the art of choosing among one's real thoughts.

Abel Stevens – (1815-1897)

What Abel Stevens said more than a century ago holds as true today as it did then.  Sometimes one just has a very hard time choosing the most civilized among one’s real thoughts.  Yesterday was a day of such reckoning for my husband.  He had gone grocery shopping to Spencers, a super market in Gurgaon.  While he was waiting in the queue at the checkout counter, a Japanese couple cut in front of him.  When he protested, the woman proclaimed ignorance “Eigo wakarimasen” (I don’t understand English) while her husband very sagely advised my husband to move to another counter.  Even if she did not understand English, I am sure, coming from Japan, the dear lady most certainly understood the etiquette of queues!  It takes neither English nor much intelligence to see people waiting in line!  I have seen the Japanese behaving equally obnoxiously in Indonesia.  Having grown up in a free country, I wondered why Indonesians tolerated it; but the lack of any response from all good people witnessing this behaviour makes me hang my head in shame.   

Actually, what is ignominous for us as a nation is our own predilection to kow-tow to all those who are lighter skinned than us, wealthier than us, more influential than us.  Another time I was at Spencers (believe it or not) and went to a weighing and pricing counter to get some fruit and vegetables weighed and marked.  I was told (as was another lady behind me) that the machine was out of order and we would have to go to the only other one available.  There was quite a long queue at this one.  However, with no other option available, we both went and stood in line patiently awaiting our turns.  Just then an East Asian looking man went to the ‘out of order’ machine and the guy who had but a minute ago told us that the machine was not working, very nonchalantly started weighing this customer’s stuff.  I was really shocked and livid, as was the lady behind me.  We both challenged the store assistant, but it made no difference.  The foreigner got served first, without waiting in any queue!  I have lived in several countries, and have sometimes faced subtle, and occasionally not so subtle, racial discrimination.  But to face it in my own country really alarms me.  Is it only I, or do some others also feel that history is insidiously repeating itself?  Are we headed in the same direction as our forefathers with the East India Company? 

Atithi devo bhava is lofty and noble, but let us not encourage our atithi to treat us with contempt in our own home and scorn our house rules!  And pray, let us have some more respect for ourselves. 

The Constant Gardeners

Yesterday was a good day.  On a whim I decided to go to the government run Sunder Nursery in Delhi.  Based on all past experiences with almost anything tainted by the establishment in our country, I expected to find a sad, grimy, wasteland.  However, much to my surprise, what I experienced was a totally blissful couple of hours, albeit with some typical abecedarian culmination without which any encounter with officialdom would leave one feeling slightly unsettled and off balance.

The first thing that hits you as you enter the gates is the disconnect you suddenly feel from the din of Mathura road considering you are barely a few yards away from the main road. The nursery is really beautiful and lives up to its claim of being the largest in Asia. The various sections are very well organised and laid out.  The perennials are divided into shady and sunny expanses with large, old trees dotting the landscape. The greenhouse was mouthwateringly lush.  The seasonal acres were a riot of colour.  The gardeners were knowledgeable, engaged, and very helpful – ready with advice and care instructions when asked for.  I know I sound a bit like an advertorial for the nursery but, in my defence, the afternoon was just so pleasurable that I feel compelled to publicly admit that my preconception was way off the mark!  The best part was that the place was completely uncrowded.  Besides us (and the people working there), I noticed only one other person.

I did not get to the bonsais or the section where manure and other accoutrements of gardening are sold, but elsewhere I bought plants with total indulgence towards myself.  At each greedy acquisition, the employee accompanying me handwrote a tally in duplicate, with price, on a sheet that had ‘gate pass’ printed on it.  The plants were all loaded onto my vehicle and I was told that the payment would need to be made ‘in cash’ on my way out, near the gate.  We said our ‘thank yous’ and goodbyes, and drove off.

At the exit were two guards who pointed us to the office.  Inside, there were two ladies and one gentleman sitting behind a counter, less than two feet from each other.  I handed my ‘gate passes’ to the gentleman along with the money.  He ignored the proffered cash but took the gate passes from my hand.  Then he proceeded to laboriously transcribe all that was written on the two sheets of paper, on to one –  also in duplicate.  In the meanwhile, the lady in the middle was sitting with a bowl of seeds very precariously balanced in her lap and a bunch of little envelopes on the counter in front of her into which she was meticulously transferring the seeds -  a teaspoon full into each at a time.  The gentleman finished his transcribing, tore off the first copy and handed it to me along with the earlier two sheets (gate passes), still ignoring my outstretched hand with the money.  I then asked in the general direction of the three whom I should make the payment to as there was no cash register in evidence.  The two flanking the seed lady laconically nodded in her direction.  I waited with trepidation as she juggled with her spoon, and paper packets, and seeds, expecting either the seed bowl or the packets to flop to the ground and the seeds to spill all over.  She managed to get everything out of the way without any mishap and reached out for the payment.  I handed her the money with what I surmised was the final bill just given to me by the gentleman sitting to her right.  She couldn’t care less about it but impatiently wiggled her fingers at me indicating that what she needed from me were the gate passes.  She briskly stamped those, handed me the change, plonked the money in a drawer, and returned to her interrupted task with an air of somebody who has a heavy cross to bear.  Back at the gate, the guards took the two gate passes from me and waved us through without even a pretense of checking off the items in the car against the ones listed on the gate pass. 

As to what the other lady’s job description was, who knows!         

    

Dr. Manmohan Singh's Interaction with Television Journalists

Just finished watching Prime Minister Dr. Manmohan Singh’s interaction with the heads of television news channels in India.  It was an interesting one hour.  I admit that I am a fan of Dr. Manmohan Singh and really admire him for his gentlemanly demeanor and overall economic vision.  It is, therefore, not surprising at all that I was totally convinced in his favour and found echoes of my own thoughts in all that he said until he talked about the government subsidies for grain, fertilisers and kerosene.   His point was that the cost to the exchequer is a notional thing – if you were to say that the price of these items in the open markets would be much higher then, by corollary, the exchequer’s loss was great.  Similarly, the loss to the country in the spectrum case should be calculated in terms of what you take as the starting price point.  Dr. Singh, with this disingenuous argument you lost me!  How can you bracket these together?  The former are subsidies provided as safety nets to the poor (at least in policy) whereas the latter made the rich even richer.  Of all our astute senior tv editors privileged enough to have been invited to this interaction because “they control the world” only Prannoy Roy came close to the crux when he asked the PM if by his comments he meant that the 2G spectrum allocation had been subsidized by the government.   

Dr. Singh spoke about the assured work at Rs. 100/- per day to the poor and its adjustment for inflation in answer to the CNN journalist’s question regarding the effect of inflation in food prices on the poor.  This reminded me of a conversation with my household helper some days ago.  He told me that the scheme is very much in place in his town, and all able bodied young men who have had the enterprise to get out and find work in cities have given their job cards to others and appointed them to report for work in their stead.  The money is then split between the two and the contractor who turns a blind eye to the discrepencies in detail.  Think of it as entrepreneurship, compulsion of deprivation, or corruption; it is your choice.  I really don’t have the heart to judge them.  These are people who work without any health insurance, job security, or even recourse against exploitative contractors who might, in any case, not give them full wages mandated by the government.  The most well meant policies and schemes can be confounded by narrow-minded self interest. The difference between these small time contractors, and A. Raja is only of scale. 

  

Saint Valentine's Day

“On ne voit bien qu'avec le coeur”  (We see well only with the heart) - Antoine de SAINT-EXUPÉRY, Le Petit Prince, XXI

Today is Saint Valentine’s Day, and from the angry sounds of blaring horns from outside my window, it seems like love is certainly not in the air and the heart has gone out of the equation!  The first recorded Valentine poem was written by Chaucer in the early 1380s to honour the engagement of King Richard II of England to Anne of Bohemia.   Those of us who are not easily able to express our love in poetic verse or clever words (kings with all the advantages of birth included) have always needed the help of scribes.   My personal favourite is this card from the 19^th   century, but whose heart would not go out to the dear lady who received this?            

An article amongst the many leading up to the day of romance in one of the Sunday papers quoted a few doctors who said that their aesthetic enhancement practices see an upward surge  towards Valentine’s Day, and the most sought after procedures at this time are lip enhancement to get pouty lips, removal of lines from lips to make them look softer and younger, and to get the down turn of the corners of the mouth turned upwards to get smiling lips.  If only the recipients of this card could see this feature story!

I hope all you ladies out there are enjoying your red velvet wrapped heart shaped boxes of chocolate, and red roses, and romantic cards, and candlelit dinners!  And, I leave you all today with Muda Saint Michael’s very famous quote “Love is like a mustard seed; planted by God and watered by men” and a prayer that we all learn to cultivate the power of love.