When I was an absolute neophyte and could just about spell the word chemotherapy and comprehend acronyms like ABVD, I was told by the oncologist that the last chemos would be the worst ones. The greenhorn in me could not quite fathom that as I would have thought that the first ones would be tougher and things would get easier as better the devil you know, as it is said! Well not quite true with the beast called chemo as it is not your regular neighbourhood devil, but a lurking hydra headed monster who grows a new head each time you get rid of one. The problem is that your poor tired body does not have time to rid itself of all the poison it has received before it is assaulted again and again and again. Our euphoria of getting almost to the end, 2 to go as of today, took a big dampening. It almost feels like the last two heads of our monster will be the toughest to slay and we will need Hercule's craft to do so, I guess.
Chemo 10 started on time. Surprise, surprise! We naively hoped it would end on time and all would be well. Ranjan seemed surprisingly calm and we again were gullible enough to believe that it all would be well. How could we suspect that Hydra was crafting a wily head! The fourth drip was almost finished when Ranjan started shivering and his teeth were clattering. He said he was cold and felt feverish. The nurses took the fever but it was normal. The shivering did not stop so I SMSd the oncologist who prescribed an Avil injection. By then the fever was 100. The oncologist asked me to inform him when it went above 100.5. The drive back home was never ending and the silence oppressive. By the time we reached home Ranjan felt nauseous and sat on the tub next to the pot refusing to move. Saying anything to him was countered by an aggressive word or movement. Where was my Ranjan! Slowly we moved him to his bed and he commandeered us to put his electric blanket on, switch the heater on, give him a quilt, a woollen cap and socks. He then fell into a disturbed sleep. When I took his temperature again it was 103.2. I was scared or should I say terrified. A quick message to the doctor to be told to remove all the heating implements and report back after an hour. 102.6. Another message! A pill to be give. Temperature to be checked. 101.2. I breathed a sigh of relief and decided I needed to come down and write. It was critical I do so.
I now hope and pray that the night will be peaceful and that the fever would have gone in the morning. But my mind is on overdrive. How do I handle chemos 11 and 12. It seems that my support therapy needs fine tuning as the poison is accumulating by the minute. Big guns are needed. More research to be done. The weeks to come will be busy.
To lose someone you love is to alter your life forever
The pain stops, there are new people, but the gap never closes
This hole in your heart is the shape of the one you lost
No one else can fit it.
Jeanette Winterson
This is one my favourite picture with my father. It was taken in Ankara in 1968. I was 16 and all dressed up in mama's turquoise blue sari. The picture was shot just before a cocktail at home. I can feel the warmth and magic of that precious moment 46 years after the event and 21 years after he left me. He died on November 29th 1992.
However much I tried, I have never been able to fill the huge gap he left in my heart and soul. Papa, or Tatu as I called him was more than a father to me. I guess it sounds cliched but he was my friend philosopher and guide. But more than that he was my 'copain' French for pal, my brother on the two festivals dedicated to brothers and sisters and was the one person I ran to whenever I was hurting be it the small scratch on my knee, or the big fight with my life partner. Often he did not even have to say anything. Words were not necessary between us. I think the most poignant example of all was when Ma died and I looked at him expecting him to break down. He just opened his arms and hugged me tight. I truly felt the loss of my mother the day he died. He had filled the space she left gaping with his love.
Tatu and I were partners in 'crime. We both loved food and shared many meals a deux be it in fancy Parisian restaurants or at the pakora stall of INA market. His way of making up for his mercurial temper that always resulted in a mercurial slamming of the door by yours truly was to whip up a delicious treat and sheepishly knock at my door. All was forgiven as the first morsel entered my mouth. Today the tempestuous child does not bang any doors as no one will knock at it plate in hand.
That I miss him is obvious. I miss him every day and more so when I am in a dilemma or facing a problem. Today when I am fighting the biggest battle of my life, I long for his arms and his healing touch. When I was too old, or rather he was too old to have me sit on his knee, I use to sit on the floor beside him and place my head on his lap and in an instant all problems were solved. I miss the early morning cup of tea we shared when the whole house was still asleep. That was our time and we made and remade the world to our hearts' content. Maybe this is why I still wake up early and creep down the stairs to the very place where his favourite armchair was kept and maybe that is why I remodelled the house to enclose that space and make it mine.
I so long for his warm embrace, for his wise counsel, for his soothing coos that made every hurt vanish and every cloud pass. Each time I have to take a decision regarding Ranjan, I send a silent prayer seeking his guidance and I feel his presence each and every time. I do not want anyone to fit the hole he left. It keeps him alive in my heart.
It was too good to be true. The last 9 chemos went well and we all slunk into our comfort zones expecting the last three to be the same. But the Gods had other plans. Ranjan next chemo, chemo 10, is due tomorrow and he has developed a slight fever. There seem to be no other signs of infection: cough, nose running, pain etc. The fever is hovering around 100. The discharge slip simply advises paracetamol in case of fever. Different websites however urge you to contact the doctor should the fever be above 100.4. I have sent a message to his oncologist and have been asked to call him up at 6pm. Beleive you me these two hours are going to seem like an eternity. I do hope it is nothing serious and we can be on schedule for our chemo tomorrow. I so want the chemo protocol and scans and removal of the port to be in 2013 so that we can usher the New Year chemo free! But this entails our remaining on schedule. Prayers needed.
In my last post I mentioned the delayed side effects that may occur post chemotherapy ABVD protocol. One has to be aware of these even if they are rare. I have had my walk in the sun and am ready to address these however difficult it may seem. But better the devil you know. So here goes.
This protocol can cause pulmonary toxicity. The culprit here is Bleomycin. This toxicity develops months to years after completing chemotherapy, and usually manifests as cough and shortness of breath. The statistics are 18%. What is disturbing is that a study done in 2004 questioned whether bleomycin is necessary at all! However, at this point it remains a standard part of ABVD. Wonder why?
Adriamycin can cause heart toxicity but the occurrence is rare if the cumulative dose is less than 300 mg/m2 during the 6 cycles. 6 cycles means 12 chemos and Ranjan has been receiving 25mg/m2 which is 300 mg/m2. Just the limit. Worrying!
The last of the big ones is secondary malignancies: lung or acute myleoid leukemia. Studies confirm that the risks after ABVD protocol are less than with other protocols. A study concludes that the administration of six ABVD cycles to patients with stage I and II Hodgkin's lymphoma is a safe therapeutic alternative that might reduce the risk of late and potentially lethal toxicity. Amen to that. One thing is certain: there will be no further chemotherapy or radiotherapy in our case.
It is definitely reassuring to know that the regimen we have followed is the least toxic. But what still disturbs me in all these studies are words like: relapse, survival, remission etc. I just want one word: cure!
But can beggars be choosers. No. So one will have to be careful and plan the coming days keeping all possibilities in mind, even if the incidences are minimal.
I will now look for support alternative systems.
To be continued.
PS: Why are we not told all these things before one decides!
In my last post I shared my apprehensions about the new elephant that has taken possession of my brain, albeit momentarily, and is creating havoc in my body demanding to be acknowledged, heard and then sent to a tiny corner. Everyone in my nuclear family and extended family of friends and well wishers are looking forward to the 27 December 2013, the day of Ranjan's last chemo. The mood is almost euphoric as they countdown to 0. I had initially shared the elation but for some days now, I have found it difficult to do so as when I think about it, I realise that much of the glee is once again based on the seduction approach of the chemo sellers. It was the oncologist who first said that all be well after the required numbers of chemos!
December 27th is exactly a month away and what looms large in my mind is WHAT NEXT! One does not have to be a rocket scientist to believe that some miracle will happen on the morning of the 28th and Ranjan will wake up as fit as he was two years ago. The 28th morning will be the usual day 1 after chemo when Ranjan is really low. The difference is that though the counts will fall as usual, this time there may not be the booster injections. The PET scan will at best give a 80% all clear. 20% will still have to be taken care of by his completely blown immune system. The past 6 months could be summed up as a bad 'trip' for the immune system as it has been subjected to completely mind blowing drugs. These have taken their toll as just a look at Ranjan's blue nails is proof enough of the fact that the immune system has a lot of work to do before it rids the body and all its organs of the toxins that have been pumped into it with alacrity and even impunity. The fight is on!
As I wrote in my previous blog, we have been lulled into a (dis)comfort zone of life in 15 days cycles. A study reveals that it takes 66 days to form a habit. We have lived this way for over 150 days. Now we will have to unlearn this and get accustomed to another rhythm and if we begin in earnest on the 28th then I have less than a month to work it out.
Step one was to simply google 'Life after chemotherapy'. What you get is nothing short of scary. The first article I clicked on was : No one told me that getting on with life after cancer would be so hard. The article is written by a doctor and the part that caught my eye was: But when treatment is over? Well, life gets back to normal. Right? Hmm … not so fast. It’s just not that easy. That’s what we forget to tell patients. Getting back to normal, getting on with life, is harder than everyone expects. Yes Dear Doctors you forget to tell too much to poor unsuspecting and trusting patients who hang on toe very word you say as if it was God's Gospel.
Getting back to a normal life before chemotherapy has wrecked your body and soul is no mean task. Maybe one has to find the new normal, not just for Ranjan but for all of us. I know the new normal will be again life in cycles. I guess this time the cycles will be longer: from one test to the other. But cycles there will be with their share of angst and fear and also hope. But life will never be the same again.
So what do we need to fear? A question that has to be addressed so that we can all conjure our coping strategies. I am reminded of the time when shortly after my father's death I had some health issue and needed to see a doctor in Paris. When he heard I had lost both my parents to cancer, he immediately told me that I needed to have a yearly cancer check up. I was 40 then. I told him I had no intention to live the remainder of my life in fear and yearly cycles. That was then and that was me. But today I find myself thrown into a similar situation but the difference is that it is not me.
I like to be prepared. Remember, I am a control freak. I like to know the worse case scenarios so that I can have coping mechanisms ready. Hence it was time for some more digging. The one thing that sprung like a leit motiv in almost all the articles was fatigue and memory and concentration changes. Come to think of it the memory thing has already kicked in as Ranjan finds it difficult to concentrate for a given period of time. Fatigue it is said takes a long time to get rid of specially when blood counts are low as is the case with Ranjan. What is suggested is exercise, lots of fluids, meditation, relaxation and so on. I have been trying to get Ranjan on this track but with not much success.
Then comes memory and attention problems or what is known as chemo brain or chemo fog. here again I have been trying to push Ranjan to read or play brain games but gave in as chemo was on. Come 2014 there will be a lot of reading and Sudokus!
Next is Neuropathy or changes in the nervous system: tingling, burning, loss of sensation and so on. These can be alleviated with medication and can take time to go. Will have to do more research on this one.
All these are small side effects. But there are the larger ones. The ABVD protocol delayed side effects are scary: pulmonary toxicity, cardiac toxicity and secondary malignancies.
I will deal with these in a later blog. I need a break and some fresh air. Retail therapy??
For the past five months my life has been controlled and steered by counts, I mean blood counts. Ranjan's! Before chemo, 6 days after chemo, 2 days before chemo and so on. The figures are staggering to say the least as they fall or increase at bewildering speed from 3 000 to 19 000 in a day,or from 14 000 to 2 800 in 2 days or from 145 to 400 and so on, depending on whether they are WBCs or platelets. One almost lives from blood test to blood test, heaving sighs of relief if all is well, or getting a bout of nerves if they are too low. In the early days it was a real stress but slowly one became accustomed as habit is indeed second nature. It is said that it takes 66 days to form a habit. The Canadian Magician Doug Henning once said ‘The hard must become habit. The habit must become easy. The easy must become beautiful.’ With chemo I agree on the first two.
For the past few days I have been feeling low. I finally made a trip of the doctor this morning and lo and behold found another set of counts to be address. My BP had fallen to 60/80. Well nI do normally have a low BP but when it dips this low it is always due to stress and worry. My good Doc P unravelled the puzzle for me. According to him and I cannot but agree, with chemo coming to an end in a month and one day to be exact, the comfort zone we had sunk into in spite of ourselves as chemo has been going on for more than 66 days is soon coming to an end. The elephant in the room is WHAT NEXT. Entering chemo zone was a first and kept me on my toes in more ways than one. But what comes after december 27th is unknown and even scary. The carefully crafted programme that kept me going 24/7 for the past months comes to an end and now it is time to get back to the drawing board and work out a new one to fill what now looks like a huge void. No wonder the counts were low.
I had a long chat with my dear Doc. Many things were said, some left unsaid. The elephant in the room was the question: will be be cured? But we did not address it directly. The conversation was about what was needed to be done after the last chemo and for the next 6 months when we would perhaps get the news we were waiting for.
I have a month to work out the next 6 months. We know that only Ranjan's immune system can bring the miracle we need. For the past 5 months his body has spun out of control under the assault of toxins of all kind and hue. His immune system must be in shock and will take time to get rid of the toxins. Then it will slowly get back in control and hopefully do the needful.
I guess it will take another 66 days post 27/12 to find a new comfort zone. Just hope the BP behaves.
Serendipity has been by big mate during this last, oops sorry biggest battle I have been waging for months. As I browsed my FB page this morning my eye fell on a link that said: Coming out of your closet I do not know why I clicked on it and listened to Ash Beckham's video. What caught my attention was the sub title: A 4-Year-Old Girl Asked A Lesbian If She's A Boy. She Responded The Awesomest Way Possible. After listening to this incredible life lesson I realised how many closets I had had, and some I still have and how we hide in our dark closets with a grenade in our hand. She says: At some point in our lives, we all live in closets and they may feel safe, or at least safer than what lies on the other side of that door. But I’m here to tell you, no matter what your walls are made of, a closet is no place for a person to live.
The words were prophetic. They explained the feeling of extreme disquietude bordering on fear that I have been experiencing and have not be able to comprehend and voice. Just a she says I was in a dark closet and needed to break out no matter how hard. I crawled into this closet on the day I knew about Ranjan's cancer and hid in it too frightened to scream my fear. I put up a show for the world, but night after night I was back in the closet. And too make matters worse, I came across pages and pages of medical jargon such as remission and secondary cancers, and one statistic that screamed at me at every page: the 5 year survival rate. My closet is the gnawing terror of losing the one I love most. Here I have said it loud and clear. I am scared of losing the one I love just as I lost my most loved ones 2 decades ago.
I have been having sleepless nights after sleepless nights for the last fortnight or so. Come to think of it all seems on course and choices made willing or unwillingly. The second opinion was a watershed in our chemo journey. On the face of it, it did not yield any reassuring counsel. It simply reinforced the fact that no matter what, 12 was the chosen number. I simply took it as a message from the empyrean an decided to just get on with it. Yet I found myself sleepless and somewhat disturbed till it occurred to me that this was the time exactly 21 years ago when Papa was battling cancer. November has never been a happy month since that fateful November of 2002.
It was on November 5th that Papa was subjected to a brutal seven hours surgery that robbed him of his dignity in the name of probable cure. He would come home a few days and leave me on the 29th of this month. November is a month I now dread. But at the same time it is a month when I cannot but remember Papa and his struggle and ask myself the question: where did I go wrong. To mama's absolute and very vocal refusal of any kind of treatment, Papa's quiet and tame acceptance came as a relief, or so I thought at that time. Conventional medicine was the only option available. My knowledge of Cancer was close to nil and Internet did not exist, so all existing alternative options remained undisclosed. One simply had to trust the men in white. When Papa walked into the nursing home he was a healthy 81 year old when he came out 10 days later he was a mutilated man. For the surgeon the operation had been successful. But Papa never recovered. Seeing him lying helpless led me to pray for his deliverance and the Gods were merciful enough to hear my plea. I was left to live on with the guilt of having suggested the conventional approach. Mercifully he was spared the radio and chemotherapy. In my defence: I did not know better.
I wonder why God has put me in the same place 21 years later. I hope it is too somewhat rid me of the guilt I carry and redeem myself. As I lie awake in the dead of night waiting for the clock to show a reasonable time for getting out of bed, I find myself wondering whether I have done all that is in my power to ensure Ranjan's recovery. I ask myself is there is something more I could do to make it easier on him. I can imagine how frustrating it is for him to be housebound and unable to lead the active and fun loving life he so enjoys. My heart goes out to him as he meekly drinks his soursop tea in lieu of his 12 year old large malt whisky or eats his organic vegetables whilst dreaming snails and foie gras! I just dream of the table laden with all his favourite dishes that I will conjure for him once he is well again. I wonder how many sleepless night will reach me to that coveted morning.
On July 4th my life changed in the space of a second. A simple word on a investigation report was all that was needed to catapult me into a world yet unknown but feared. For an instant I was thrown off a cliff without a parachute or a bungee jumping cord. I had to create my own before I hit the ground or in my case reach home with the terrible news. Just like in a free fall I had seconds to decide how I would break the news to the family.
On that day the whole family was there: Ranjan, my girls, my son-in-law and my grandchild. My mind travelled at the speed of light if not faster. A multitude of images and thoughts zigzagged madly and needed to be processed and put in order and above all I knew unequivocally that I was the one chosen to set the rules of the game we had suddenly been destined to play. It accrued to me to make the right decision and I was scared as it concerned the life of my loved one. As I entered the house and found my way to the dining room where the family was seated around the table. By then I knew that the only way was honesty and straightforwardness! So I told them the reality without 'maybes' and 'perhapses': Ranjan had cancer! Now let us get on with it. The stage was set and the game was on! Parachutes and jumping cords would be fashioned along the way.
It has been a cliffhanger in more ways then one. A roller coaster ride! At every bend something new awaits you and you need to face it come what may. There are no rules, no explanations, no guide books and above all no going back. You just learn at every step of the journey and work out your coping strategies. It has been a real learning experience. The one constant has been to adjust to life in fifteen days cycles with bad days and good days. One has learnt to bear the bad days and enjoy the good ones in the best way possible.
Today we have completed 9 cycles and have 3 more to go. Habit is second nature it is said, and I must admit that we have become inured to these cycles or should I say lulled into a false sense of security. Even I who resisted like mad and kicked and screamed in the early days, have laid down arms in spite of myself. There battlefield was not even, I conceded temporary defeat.
Now it is just a matter of let us get on with it and numbers dance in my head: 3 more chemos, 12 bad days, 15 good days, 1 PET scan and then game over!
I have over the past months now often counted the blessings or happy side effects of the temporary presence of Mr Hodgkin's in my life. There have been many and I am deeply grateful. But nothing could have prepared me for the sublime experience I experienced yesterday when I clicked on a link prompted by the title: blind autistic boy sings! The angelic voice and simple lyrics resonated deep in my soul as am I not the one who has always urged people to look with their hearts! It is only when I heard this young Angel who cannot see, beseeching the Lord to open the eyes of his heart that words I had used too oft took on a new meaning altogether. I was magic.
For the first time the words 'seeing with your heart' revealed their true meaning. That little boy sang not from his heart alone, but from deep within his soul and guts. It did not matter what colour or hue or shape or size his Lord was. He was his, he was yours he was mine. What mattered is how each one of us interpreted the words and who we wanted to see. Till now seeing with your heart had a very mundane and limited meaning in my lexicon. I use the phrase to urge people to help those in need and to say things as they are, as it is not the right time and place for sugar quoting, to help Project Why. How trite and even selfish. Makes me feel so small.
The power of the voice of this little blind and challenged boy change it all. When you open the eyes of your heart you should be prepared to see that omnipotent, omnipresent and omniscient force called by different names. The question is how do we see Him. The answer is simple: in all the places and things you never bother to look at and see: the tree growing in front of your house, the lone butterfly sitting on a flower for a fleeting instant, the funny shaped cloud in the sky or the star that shines brighter than the other. You see Him in the caress of the gentle wind that blows or the first drop of rain that falls on the parched earth. But that is not all. You see him in the eyes of the little child begging on the street, or the old woman who sleeps under the bridge. You see him when you gather the courage to look into the eyes of those you wish to avoid, reach out to the one that needs you or share your last loaf of bread with the one hungrier than you.
The Lord will only open the eyes of your heart when you are ready to truly see with your heart.
Please take a moment and view this video. It may change your life. It changed mine.
For the past months I have been dreading a meltdown. I know it is lurking somewhere and just needs that one little word or act that would be the trigger. Whether it would be ashort emotional outburst or a mental collapse is any body's guess as it says in the picture: trying to figure out when I can have the meltdown I am entitled to. It almost happened yesterday when Ranjan came up with a preposterous idea engendered by a misplaced sense of duty. My eyes started welling but I knew that if I allowed one tear to fall it would be the end. Crisis management was needed. I left the room and strangely got reminded of an old Rolling Stones song and its very appropriate lyrics: I tried so hard to rearrange your mind. But after while I realised you were disarranging mine. You better stop, look around , Here it comes, here it comes, here it comes, here it comes, Here comes your nineteenth nervous breakdown! They brought the much needed smile and the tears quietly crawled back to the space I had carefully crafted for them the day I heard the news! There will be a day when I will allow them to flow freely. mingled with abundant tears of joy. I am sure you have guessed when that would be.
Actually in the given context I do not know who is rearranging whose mind. I just know that I have to keep my head cool. But yesterday showed me how close I was to that dreaded breakdown and how crucial it was for me to evolve new coping strategies to ensure that I never reach the point I reached yesterday. Till now I had believed that my rants and raves on this blog were catharsis enough and provided the emotional release I so need. But the past 17 months have taken a huge toll on me and the wear and tear on nerves is phenomenal. First it was 12 months of seeing Ranjan fade away in front of my eyes and I running like a chicken without a head, from pillar to post, leaving no stone unturned and yet not being able to find the monster gnawing happily at my loved one. Then getting the one news I did not want and struggling with a situation I was not happy with; agreeing to live in 14 day cycles and abiding by its stringent rules. Imagining the havoc being played in R's body with cells dying and generating in the most unnatural way imaginable and remaining mute and helpless.
I realise I am just a word, an action, a look, a gesture away from collapse and know that this cannot happen. Should I write more and bare it all even if it hurts someone? Should I stomp harder and longer on the treadmill? I know that the only thing that can work is seeing the lighter side of things and God knows how much I have tried to! But I am not a humorous and witty person. I have always been a serious one, even as a child. I guess it is the price you pay for being an only child, born to older parents and destined to a nomadic life.
Maybe I should play some brain games on the computer. Will give it a try.
I did do one crazy thing yesterday to rid me off any vestige of negativity. I took a picture of myself and used some special effects. I guess this is what I would look like if a meltdown occurred.
Most of my earlier blogs have been grim or serious. Today I would like to share the lighter side effects of Mr Hodgkin's stay with us. It all amounts to many role reversals that are quite amusing. Even since I embarked on mission Ranjan, I gave up a hat I had donned for years. I mean my chef's hat! Cooking use to be my favourite hobby. Here again I was following my father's footsteps. Papa was a mean cook. While reading law at the Middle temple, he found time to cross the Channel many times and pursue his passion for cooking. With his law degree he also acquired a Cordon Bleu ribbon. He became neither a lawyer nor a Chef but a diplomat with a passion for cooking. Cooking was his one and only hobby. He always told me that that it was better than any other hobby as you created and got appreciated almost on the spot. Throughout the first 4 decades of my life I have been fortunate to taste his food a myriad of times. He was a man who could spring up a starred dish with whatever he found in the fridge. The more stressed he was, the more delicacies he churned. Some of my favourites were his fried rice, his crispy sweet and sour fish, or his small potatoes cooked two styles in the same frying pan. They are my Proustian madeleines. Many know Anou the cook. But you will be surprised if I told you that I began cooking late in life, when I was almost 30. Stressful family issues brought out the cook in me and just like Papa the more upset I was the more complicated the dish I produced. I remember many times when I use to cook with tears rolling down my face.
Cooking was my best stress buster.The array of cook books that adorn the shelves of my large kitchen, it used to be my mother's bedroom, are ample proof of that. When Ranjan was diagnosed with cancer, I should have been cooking life a Fury so stressed I was/am. But strangely the exact opposite happened. I did not feel like cooking at all. In fact I now shun the kitchen and my books are gathering dust. I guess I had to be put my life on hold and cooking was an integral part of who I was. I am eternally grateful to first born who sensed that this would happen and organised things while she was here. The house is now being run efficiently by my younger one ably supported by the house staff. It is a boon as I truly do not feel like cooking! My day is spent looking after Ranjan and dispensing all his pills and brews. Strangely I even do not feel like cooking for him. My Chef's hat lies in wait for better days.
As I wrote at the beginning of this post, there have been amusing role reversals post cancer. Ranjan spends a lot of time watching the box, particularly on days when he is feeling tired and I often find him watching cook shows. And believe it or not, he even remembers some recipes and asks for them tober made. he has not yet entered the kitchen and donned a hat. Maybe that too will happen. Our household will be looking very different in 2014.
As Ranjan does not move out much he has been watching our maid clean the room. Ranjan has always been punctilious about cleanliness and had the irritating habit of finding the one speck of dust that had escaped the eye of the person dusting the house. Last week he finally decreed that carpets could not be cleaned with a broom as we have been doing but that I needed to get a vacuum cleaner! I wonder what other surprise awaits me in the next six weeks.
As I have written time and again, there have been a series on serendipities in my life in the past months as I wage the most crucial battle of my life. This morning as I stomped on my treadmill, and I use the verb stomp as that is exactly what I do, with music blaring in my ears, a phrase from the Doors famous song Break on Through caught my attention: I found an island in your arms; Country in your eyes. It somehow summed up my relationship with Ranjan and also prompted me to take some time and expand on the words in the light of my life. Before I started to write this post, I browsed my Facebook page and wonders of wonders serendipity was at work again. This time in the form of two links. The first one was a link to a video clip that urges you to love life to its fullest even when faced with the fact that everything you love will eventually come to an end. I urge you you to watch it. It could be life changing or at least make you draw your list your priorities in the right manner. In that clip the narrator quotes Dylan Thomas'sDo Not Go Gently Into That Good Night, a poem I had forgotten but one that rings so true today.
I would be lying if I said that the thought of death did not enter my mind when my eyes fell on the ?lymphoma at the end of a lengthy piece of medical jargon. And I do not mean death of a loved one, but death of each one of us. In hindsight I think that somehow that was the moment I realised I too had entered old age and all we had was borrowed time. But I too want to Rage, rage against the dying of the light. And how do you try to give a tinge of permanence to the transient? Maybe by letting it leave the confines of your mind and share it in words. And if you look at things this way than the rage for writing I have experienced from the moment I knew of R's ailment is not the catharsis I thought it was, but the burning desire to give immortality to what I had till then hidden deep in mu soul.
The last stroke of serendipity this morning was another link, this one about a nurse revealing the 5 top regrets people make on their death bed. Two of them really struck me: I wish I’d had the courage to live a life true to myself, not the life others expected of me and I wish I’d had the courage to express my feelings. Maybe it is a boon to have read this today as it gives me time to redress the situation, even if time is short.
All this is a lot of process at one time. But let us just say the ball has been set rolling. If we take it from the top, by this I mean the way the serendipities occurred this morning it would translate like this. Jim Morrison's words made me understand what Ranjan means to me: the one who gave me security and opened the whole world for me. I just did not see this till now. Time I did. Jason Silva's clip brought to light the fact that it is in our hands to make the transient permanent in our own ways and not accept to go gently and lastly even if there is little time left, there is still enough to make that bucket list that remained in our head and have the courage of being who one is and expressing all repressed feelings.
It is a tall order I know. But somehow it began surreptitiously when I decided to start this blog on the very day Cancer entered my life again. Serendipity again?
Yesterday Ranjan's oncologist could not resist asking me why I was so much against chemotherapy. This was during our heart to heart where we found ourselves talking as usual at cross purposes. His question took me by surprise. How could I explain to him that for me it was a visceral reaction? I simply told him that the very idea of having to kill the good with the bad did not sit well with me. I realised later that my answer would have sounded very hollow. So be it. Even if God descended and asked me to change my opinion, I would and could not.
Later at night when sleep eluded me, I again thought of my strained relationship with chemotherapy and wondered where it came from. My thoughts wandered back to Kamala, my mother. Her apparently illogical and childlike reaction to cancer was probably the reason, if reason there is. At that time both Papa and I were so steeped in our love for this incredible woman that we followed her wishes blindly. Neither of us ever asked ourselves why a woman who had withstood every blow that came her way with courage and clarity had suddenly become an unreasonable and obstinate brat. We only wanted her to be happy and thus played by her rules. Last night, I tried to make sense of that fateful year that began in July 1989 when she was diagnosed with lung cancer and July 1990 when she breathed her last. And suddenly I saw it all: mama had scripted her swansong.
Knowing that she could not beat us and have her way if she remained the pillar of strength she had been all her life, she knew she had to become someone different. A brief fainting spell, whether real or willed allowed her to recast herself into a little girl who has lost her recent memory. This allowed the poised and rational lady to throw tantrums and make ludicrous demands. She could run out of an MRI scan and not be derided; she could refuse any form of treatment without having to give a logical reason; she did not have to win battles as there would be none. But what was it that she was so petrified of: chemotherapy of course. And it was not the fear of losing her hair as though, she was a little vain, she would not have insulted her intelligence by proffering such lame excuse. Her fear was visceral and intuitive. She needed a battlefield that was to her advantage and she found one. We played the game by her rules and she won her last battle with her dignity intact.
Mama knew she did not have the arguments she needed to convince her cartesian husband and daughter. She was right. In 1989 there was very little information about alternative therapies and options. The information revolution had not taken place. Internet did not exist. Where would she have found the arguments to convince us.
Even today, with all the information I have, I was unable to stop chemotherapy from entering my life. It is a very powerful opponent with astute proponents who are masters at seduction. The best I could do was provide additional support. I was even unable to answer why I was so much against chemotherapy with conviction. Such is the power of modern medicine.
The best I could do yesterday was tell the doctor that should I fall prey to the big C, I would prove to him that options that worked existed. That is the only turf where I know I can and will have my way! I am my mother's daughter.
Today was chemo number 9. Of all the chemos we have gone through, this was the strangest. I do not know why it reminded me of the Beatles song Revolution no 9! I read the lyrics again and no matter how spaced out they may seem, the somehow fitted the mood I was in all day. Of all the explanations given to this experimental piece of music the one I like best is: Lennon conceptualised the piece as representing a revolution in the usual sense, but rather as "a sensory attack on the citadel of the intellect: a revolution in the head" aimed at each listener. When you read the lyrics they make no sense but push you to find a meaning within the nonsense. Chemo 9 was just that.
It all began much to efficiently. The admission was spot on, the pre chemo act like a dream. It almost felt like this time we may be home early. Though Ranjan as usual felt queasy the moment he entered the chemo day care, he was smiling as you can see in the picture. The pre meds were given without the DEXONA and all seemed too perfect. I took a break as Shamika had come and came home. I called her and she told me that they had just begun the chemo but that Ranjan was extremely agitated. I rushed back and found him restless something that had not happened before. The chemo was a nightmare. He barely laid down, ate nothing as he said he was nauseous even after having been given an anti emetic. I felt very uncomfortable and helpless. My heart wanted to pull out all the needles and poisonous potions and go home to never return but reason took the upper head. The one who always sees with her heart had to look at things with her head.
I was as restless as him. I felt wretched. I knew why he was feeling this way. He was just fed up, his body was saturated and screaming for relief, a relief I could not conjure even with my best intention. I located the Doctor and we had a tete a tete. It was once again the usual dialogue of the deaf each of us defending our points of view: I wanted him to treat the person, he was treating the ailment. I wanted him to hear the cries of a tortured body, he stuck to protocols and numbers. Having come so far I knew I had to capitulate. The only condition I could put was that we finish before the last day of 2013: chemos, PET scans and removal of the port.
Now I need to put on yet another mask and convince Ranjan that this is the best for him. It is a tall order for me and will need me to put up an act worthy of an Oscar! For the man I love, I am sure I will find the script, the set and the props to do so.
I guess it is my " revolution in the head", albeit an unsolicited one.
This picture could have been taken two years ago when Ranjan was in good health, barring the hairstyle I guess but he always came back from his barber practically shorn of all his hair. You do not have to be a rocket scientist to see that he is looking far better than he was a few months ago. Tomorrow we will be going for chemo 9! Then just 3 left and hopefully the word chemo will be removed from our lexicon forever.
I wish medicine was not a series of protocols that had to be followed to the T! I wish treatment was tailored to the patient, keeping in mind his needs, his progress and above all his wishes. If God made each one of us different then how can one size fit all? The new commercial medicine approach reads more like a mathematical equation than a prescription for healing. Hodgkin's Stage II B = 6 cycles ABVD + 3 PET scans! There is no fine tuning. There is no room for listening to the patient. One modern medicine forgets is that true healing comes from within the person and if the patient gives up, then no mathematical equation can work.
Those of us who have experienced the healing approach of the good old family Doctor, cannot but regret the total extinction of this breed. I still remember good old Doctor Agarwal who was our family doctor in my grandparents house in Meerut way back in the sixties when I was a kid. I can still recall his portly presence as he entered the house when called to tend to one of the family. A house servant carried his big black bag. Before going to see the patient of the day, he would sit in the lounge and chat with the elders, have a cup of tea and some snacks. In the course of conversation he would be enlightened about the ailment by someone or the other and ask a few questions. He knew the each member of the family and their idiosyncrasies: the hypochondriac aunt, the stoic uncle, the shy sister in law and so on. He was as much a psychotherapist as he was a doctor and knew exactly what to say to each one to make them feel better. If it was one of us kids who was sick, another was sent to find out if he had opened his bag, taken out his metal syringe box and asked for it to be boiled. Those were still days when the same needle was used over and over again! If that was the case, then we knew we would have an injection and terrified. If not we waited patiently for him to finish his chat and come to us. He examined us and then prescribed some pills or potions. And that was it. Everyone was happy: the parent of the sick child was reassured, the child happy as there had been no painful shot and wonders of wonders the potions worked each and every time.
Today there are very few doctors who heal the person and not a part of the body. There is no bonhomie and comfort. There is no laughter or mindless chitchat. The equations have changed. What we have today is a power game tilted in favour of the doctor. You just have to listen and obey. Should you break the protocol, then you could be in for a dressing down.
For the past month now, two priests have been chanting the Maha Mrityunjaya Mantra for Ranjan. Tomorrow the puja will finish and the priests would have chanted it 136 000 times. The literal translation would be the Death Conquering Mantra and is from the Yajur Veda (3-60). It is known to be an extremely powerful mantra. This mantra is said to have the power to remove all sufferings, ward off all evils, remove diseases and bestow the aspirant with health and energy. And it is said that when this mantra is it chanted with great devotion and serious contemplation it is said that the knowledge of this birth and death cycle is revealed to the aspirant. And thus it helps in overcoming the fear of death.
One may wonder how a Cartesian like me would get such a ritual done. But as I have said many times in this battle I will leave no stone unturned, and no known remedy untested. And though I am Cartesian I am also the one who has been brought up on the big picture theory by a father who too was Cartesian by nature. He turned to spirituality in the later half of his life and embraced pure bhakti. If I recall correctly, it was during his posting as President of of the UN Commission in Saigon that he turned to God. Maybe he sensed what lay ahead and was frustrated by how little he could do is spite of his best intentions. I guess it is at moments of crises that we remember a greater presence. When is elder brother got seriously ill and we all feared for him, Papa got a Maha Mrityunjay Puja for him. My uncle outlived my father by 10 years!
When Ranjan got ill I had a small version of the Puja done. At that time we were helplessly groping in the dark not knowing what was ailing him. When the beast was exposed and turned out to be the one I dreaded, I decided it was time to unleash the big canon. I must admit that things have gone well and Ranjan has showed remarkable progress in the last few months. He is looking much better and barring the few post chemo days, is almost back to his old self. I do not know if it is the prayers or the cannabis! For me it is everything put together as part of the Big Picture.
For quite some time many have been pushing me to get a second opinion. As far as I was concerned a second opinion from any Doctor part of the medical bizMess seemed a waste of time as I knew that it would be a case of you scratch my back I scratch yours, but any way once again it was people I care for and who have stood by me that asked me to get the second opinion. I guess I too hoped against hope that the second opinion may stop the chemos at 8! How gullible can I be, even after my recent close encounters with the commercial medicine kind. Anyway I finally got an appointment with a supposedly eminent oncologist of another five star super speciality hospital. This one is located at the other end of the city. This meant braving the evening traffic. We did and reached yet another hallowed portal. Found our way to the right place and settled down to wait. Blissfully the wait was not too long. I had taken all the papers and put them in chronological order to allow the Doctor to have easy access to the case history. I was prepared to answer all questions and maybe ask some of my own. To my mind basic bedside manners and even the minimal second opinion protocol would at least entail the Doctor looking at the papers, even perfunctorily, to at least to make the person who has come seeking a second opinion feel reassured.
You seek a second opinion when in despair and often for a loved one. Even if you ultimately will agree and second the treatment prescribed by a colleague, at least play the game by some basic ethical rules. That was not at all the case. The Doctor did not look at any papers. he did not even ask me why I wanted a second opinion I was hoping he would compare the 2 scans one before chemo and one after chemo 6 and then pretend to think, look at a few papers and finally give his opinion. My second opinion lasted precisely 3 minutes or 3.30 at best. No report was looked at. I gave a very brief case history and that was it. He said we were on the right track and he would be cured after chemo 12. Of course one more PET scan would be needed to as he put it 'record' the situation.
We were dismissed but I wanted a few more answers. What about secondary cancers. Well they could happen in 20 years was what I was told. I then could not resist telling him that at best chemotherapy would cure 80% of the cancer, the balance 20 had to be taken care by the patient's immune system. The young doctor who was sitting there looked at me and smiled. I then asked for the fee and was told a sum that I handed over.
I did not know whether to laugh or cry or be angry. I only knew two things: one that I would never seek a second opinion unless it is from a Doctor in a Government hospital, and two I just need to grit my teeth and go through the remaining 4 chemos and then bid farewell forever to this line of treatment. Every dog has his day; mine will come after the 27th December 2013!
Many of you have asked me how I manage to keep going without losing it. SoI thought I would share my coping strategies today. First and foremost 'losing it' is not an option I have. At least not till I get a real ALL CLEAR for Ranjan that would be not before June 2014. So without quite realising it, I have almost surreptitiously crafted a schedule for myself that fits in the the few free slots I have in the day. I call it my downtime or alone time! First and foremost I make it a point to wake up very early, sometimes at 3.30am and tiptoe down to my little office and write. And that time no one is awake and the world is mine. From total silence with an occasional dog barking, I can hear the first bird calls. It is pure magic and I feel alive. I am ready to take on the day.
The other things I have found myself doing quite regularly is a bit of retail therapy. Often it is simply visual retail therapy: browse in my favourite book shop, have a look at the new collections at Fabindia or simply walk past the shop windows. Sometimes I indulge but just a little.
Reading is of course the all time favourite and the frequent trips to diverse organic products outlets allow me to devour books. As many of you know I have mastered the art of reading in a moving auto rickshaw. Sometimes I do not even realise we have reached the destination so engrossed I am in my book. It is also good for my nerves and my annoying backseat driving.
Every Tuesday I have a date. Don't go imagining things! It is with a girl friend and we have a cuppa and chat sense or nonsense depending on our moods.
And since a few weeks I have a new weekly treat: going to see Utpal at his school and watch him bloom from minute to minute. It is a huge gulp of fresh air, an unbeatable feelgood shot, a moment when I truly jump of the spinning world and catch my breath. It works wonders.
So all these bits of downtime make me strong and ready to fight to the end!
This morning I got a phone call asking why there was no new blog! I guess it was a bit of no news is good news on the Ranjan front. This picture with Ranjan smoking his Saturday Cigar could have easily been taken a year ago when Ranjan was well. But believe me, it was taken yesterday evening! It feels good to see him like this but I will not temp Clotho, Lachesis and Atropos, the famous Fates who hold the thread of our destiny. I also guess that my virtual absence was also due to the fact that I tried out a raw diet recommended by a friend that kept yawning all the way to bedtime! Maybe that is the remedy for my sleepless nights.
But this morning I got a mail from my friend and mentor who wrote that I was filled with so much positive energy and in the face attitude in this battle I wage. Got me thinking. Actually he is quite right and maybe this is one if not the biggest side effect of chemo/cancer! When I first allowed myself to let the word cancer spring in my brain - must have been a little before we got the confirmation - I quickly pushed it back in the dark closet I had slithered in after my pa's demise. The C word frightened me and made my blood run cold; it was associated to the death of loved ones and had to be relegated to dark oblivion.
It must have been in June or so that the first thought about Ranjan's ailment being the dreaded crab came to my mind but I just pushed it back with undue haste. But the seed was planted and I knew no matter how little I water it or put in the sun, it would germinate. It did on July 4th. It must have been part of the big picture that it was I who got the news. That gave me some time to decide how I would take it and in the short ride between the Doc's office and my home I knew I would break the walls of that closet and face the sod head on. I presume that is the in the face attitude that my friend speaks about.
In the light of this perception I realise that perhaps this is the very first time that I have taken a challenge with so much determination. In the past there were always others to help and support me, but this battle is mine alone. It has been very empowering and must be part of a larger image. I met a man in the Tibetan doctor's waiting room yesterday. His wife had cancer and he was running from pillar to post just like me, the only difference was that his wife was not cooperative and all the poor man's efforts landed in the dustbin. I have been blessed by the fact that Ranjan is the most cooperative patient in the world and swallows everything I come up with. And with the help of everyone who has stood by me I know we will get his immunity back and kicking.
Some breaking news! Ranjan is back on the treadmill and walks for 25 minutes! This is super and I am so happy. The only downside is that this will only last till Thursday as Friday is chemo 9 and then at least 3 days back to the mill has he slowly recovers form the chemical assault! Anyway let us just be happy for the good times.
Apologies for the quality of the picture but the light is bad in our apology of a gym:)
A dear dear relative caleld to say he did not like the title of this blog.He found The Last Battle too depressive and probably thinks I am have the strength to wage more battles!
So the blog is now called: My biggest Battle till I find another title. Any suggestions.??
This not a torture scene from a horror movie. It is what has been happening on every day 6 after the 8 chemos Ranjan has been subjected too. It is the blood test taken a what is called the nadir of the cycle, or for the uninitiated the time when the blood counts are at their lowest.
In medical parlance, chemotherapy is given in cycles. In our case every second Friday. For them a 'cycle' means the day on which chemo is given. My picture is a tad different. My cycle never stops from day 1 to 14 and I have just realised that I have chemo on my mind almost 24/7. There is a side effect in chemo therapy called chemo brain, chemo fog or Post-chemotherapy cognitive impairment. I just heard of it a few days back and now understand why Ranjan is unable to concentrate. Chemo fog entails loss of memory, concentration, remembering names, problems multi tasking etc. One of the chemical drug that brings this is steroids the very Dexona Ranjan reacted too so badly too in the first chemo and that was given to him SEVEN times thanks to the super efficiency of a super speciality hospital! I owe him apologies for having kept badgering him to read or do sudoku! Poor chap. Here is an interesting first hand account of a cancer patient having lived in a chemo fog!
But let us get back to my chemo cycle and let us begin it just like the medics do on day one. Day one is chemo day, you get up early, pack your goodies: edible food, ice, chocolates, iPad, a book ( ha ha ) and set off for a day of battle. Yes it is battle day from start to finish: you battle to get a quick admission and a bed - the alternative is what they call a recliner and I call a torture chair -. That is battle one. Then you move to battle two where you battle to get the chemo started and from now on to ensure that the right drug is poured in the veins of your loved one. Then as every patient has to have an attendant - shocking in a expensive super speciality hospital, this sounds more like a state run one - you keep looking at the drip and scoot when you think it is finishing for a nurse to arrive. And then you battle to get your release. Coming home means dealing with Ranjan who has reacted differently to every chemo so you have no reference point and have to deal with a new situation and find a solution.
Day 2 and 3 are days when Ranjan is really down and you just watch him and try to make things better, coax him into eating and just feel helpless and angry.
Day 4 and 5 are better days when Ranjan revives a little and you can pretend that all is well.
Day 6 is blood test day and you wait with bated breath for the results hoping they will not be too low. Once you have them you SMS the doctor.
Day 7 was when you had to see the doctor, but I have done away with this as it was just part of a drama that I did find necessary.
Day 8 and 9 are again quiet but then day 10, 11 and 12 are when I have to give him his booster injections.
Day 13 is a repeat of the image above with blood test and waiting for the results and getting confirmation from the doctor that he is OK for chemo.
One element of the 15 day chemo cycle we have been following for the past months is a visit to the Doctor on day 6 or 7. That is when Ranjan's immunity is at its nadir and he is most prone to infections. Logically it is a time when he should be kept away for sources of infection and hospitals are the biggest sources of all types of infections. We did follow the 'protocol' a few times but then I realised that Ranjan's presence was not needed as all the questions were answered by me. Moreover Ranjan was fine and there was nothing to report. The Doctor simply asks something as inane as How are you and Ranjan answers he is OK. I then fill him in on silly details that are not of any consequence and ask him so questions to which I get evasive replies. With Ranjan sitting in the room, I cannot ask the questions I need to. So on the next 'appointment' day I went alone as honestly nodding your had and mouthing OK is no match to the risk of infection Ranjan is put through when waiting in a hospital OPD. And wait me must sometimes for more than an hour. From the moment I entered I realised that the Doc was not pleased or comfortable with Ranjan's absence. For me it was the ideal situation as I had his attention and could ask disturbing questions and also press for answers. I got some and had to be satisfied with vague ones in some cases. When he wrote the 'prescription' for the next chemo he did not fail to write in bold letters PATIENT NOT BROUGHT. I was still clueless about his being so vexed.
The next time Ranjan was fine again but remembering his dismay at Ranjan's absence I SMSd him asking him whether I should bring Ranjan though there was nothing to report. He answered with a curt: bring him. We made another pointless trip which was a waste of time.
It is only after seeing the film mentioned in my last post, that I understood the reason for the need of Ranjan's presence. It is all part of the fear that is installed and peddled seductively or even brutally in the hallowed institutions of modern medicine. A fear that can only feed on our total sense of helplessness that forces us to kneel at the alter of allopathy. This fear psychosis is based on the ability of the peddler to make you believe that he and only he can help you and that your only option in the instance of cancer is drugs. An entire carefully crafted and enacted drama is played in front of your eyes, and the eyes of the loved ones accompanying you. All other options are carefully hidden or should you suggest one, immediately derided. By the time you leave your are seduced or frightened to death.
So the presence of Ranjan during any meeting with the doctor is crucial to keep the power equation in the favour of the doctor. My power is reduced in great measure and many of the questions I would need to ask are left unsaid.
I must say that my seduction was minimal as I stated from the day go that I would continue alternative therapies and nutrition regardless of the chemo. I had enough knowledge to stand my ground and I have stood it till now.
But for the past months I have also been researching in details all the elements that are carefully kept hidden, or doled out in tiny measures so as not to rock the boat. The terrible side effects, the long and short term ones. I was taken aback at the fact that statistics change when Ranjan asks a question alone or in my presence. The 1/5000 easily becomes 1/100000! I have ample examples of this. To cut it short it makes me sick and sad.
The fear of the disease is so well peddled that it has a led to an entirely new branch of medicine called preventive medicine, and here I do not mean the one that suggests drinking clean water, washing your hands, eating well, exercising etc but the one that instills fear of having cancer in the far future. This has brought into existence a new expensive paraphernalia of tests and unnecessary if not fraudulent and amoral treatment. I remember having been told by a doctor in 1992 that I was a high cancer risk as both my parents had succumbed to the disease and that I should have yearly check ups. I told him to go to hell as I refused to live a life in fear. This had been an intuitive decision as I knew zilch about the big C at that time.
There are tow tests that are done with alacrity and impunity and have now been exposed.
Every woman is told to have a mammogram every year after 40. It has now been proved that mammograms can cause cancer! It is not an effective tool to detect cancer as 70 to 80 percent of all positive mammograms do not, upon biopsy, show any presence of cancer. And even with the latest machines that emit fewer rads, each mammogram increases the risk of cancer by 1%. Not to forget that mammograms are expensive and cause unnecessary angst and worry. Remember the fear factor!
The other one is the PSA test that is supposed to detect prostate cancer. Would you surprised if I told you that the man who discovered PSA, Dr Ablin has written a book called the The Great Prostate Hoax: How Big Medicine Hijacked the Psa Test and Caused a Public Health Disaster! A man with high levels of PSA does not necessarily have cancer. And the reverse is also true. Men with low levels may have prostate cancer. The screenings have adverse effects: financial, psychological and unnecessary biopsies. A prostate biopsy is something that most men dread… And with good reason.
I have always worn many hats. I guess we women are destined to do so and do it with aplomb! Maybe that is why God has made our brains more evenly balanced between left and right-brain processing! But jokes apart, it is a fact that we are made to wear several hats as we saunter along the journey called life! And somehow many of us, including me I must confess, wear them quite happily and secretly dream of being a superwoman. Kamala my mom, God bless her soul, was a very practical and even astute woman and had a very different take on what a woman should do. When I got married and began wearing hats at the speed of light, she warned me and told me to remember that one day I will grow old, my knees will pain and my back will break, and people around me will still expect me to juggle my hats with the dexterity of a 20 year old! Of course I did not listen as I did want to be superwoman. I was wife, and mother and daughter and working woman and friend and cook and hostess and shoulder to cry on and punching bad and more. Each persona has its set of variations that came with the demands of the day. I looked at them as adornments to add to each hat: flowers, feathers, stars. Sometimes there were thorns that needed you to give more attention to one hat: sitting by your sick child the whole night and then making it to work after carefully making up so no one would see. It was exhausting and still is.
With time some hats were worn less often, and some even set aside for a while and new ones donned. The best part is that many of them were put on one's head willingly: that of mother-in-law, grandmother, Utpal's Maam'ji and Project Why's Anou Ma'am. And somehow I enjoyed them all but never let go off the main hat: me! I always made it a point to take that alone time that kept me going. Being an only child with a nomadic life, it was easy to do so as you have to master the art of creating games to beat your loneliness. Solitude was never a problem. I had my books, my invisible friends that were part of my life and whom I talked to and there were times I talked to myself in the mirror and even sang and danced. As I grew older the games changed a little. Books took a large place in my life and even today I read while in my auto rickshaw! I have also discovered a new stress buster that worked wonders. I play my iPod very loud while walking on the treadmill and as it has songs that I have liked from my teens and even before to now I time travel while exercising. When I get off the treadmill I have a sprint in my gait and a smile on my face. And a few years back I fulfilled a long cherished dream and published my first book. Writing is now my biggest catharsis.
On the 4th of July 2014 I was forced to don a hat I never wanted. Ranjan was diagnosed with cancer and I had to become his cancer buddy. It is a hat that weighs heavy on my head, like Baudelaire's heavy lid of low sky so beautifully evoked in his poem Spleen. This hat is too heavy to juggle and all other hats have shrunk under its weight. I struggle to keep them in place and ensure they are not damaged. But what frightens me most is the fear of losing myself as should that happen then I would not be able to bear the weight of this new dark lid.
This morning I received a link to 2 stories that sends chills down my spine. The first one is called Cut poison burn and tells how If you have a child diagnosed with cancer, the government can force you to subject your child to chemotherapy and radiation treatments.And if you don’t comply, Child Protective Services can take your child away. The other is about an Amish girl who had to be taken out of the US to avoid experimental chemotherapy. Do read this story as it gives you an account of the ugly side of chemotherapy and experimental trials and the big bucks! It also tells you how the State takes away the right of parents to chose the treatment they would want to and believe in. The story also gives you a honest account on the cancer bizmess which is a whopping 550 billion business. No wonder they do not want to see their chemical poisons. The film above gives a link to film itself. Do find the time to view it as cancer may come into your lives. God Forbid!
You will be shocked by what you see and hear! The bottom line is that chemo kills! Chemo is still in experimental stages. It has been so since the mustard gas discovery over half a century ago. You will be flabbergasted to know that over 39 clinical trials on children are going on presently and sometimes against the will of parents courtesy some skewed laws that are made to help big businesses and their supporters. There also 12 000 other clinical trials on the anvil.
But the most important link I found was to the film below entitled Cancer - The forbidden Cures. This film is an eye opener and is worth watching at least the first 12 minutes. It sent chills down my spine and validated much of my visceral aversion to chemo as well as my mother's stubborn and child like aversion to chemotherapy and other 'legal' cancer cures as well as the well planned and horrific chemo bizmess.
I watched the film many times to make sure I was hearing right! To put it in a nutshell this how the business of medicine and therefore cancer goes. I will try and put it in a tongue in cheek way to make it palatable. Imagine someone has been unwell for some time, like in the case of Ranjan, and one is worried and wants to find out what is the cause of the ailment. Even if you are weary of conventional medicine and your good Doctor has not been able to fix it you are forced to enter a dark tunnel: tests, more tests, investigations, more investigations and more as nothing comes out. It in an infernal machine in which you get caught in spite of yourself, particularly if the patient is a loved one. And then one day a diagnosis is given but it has to be refined so more tests, more investigations, some pervasive, some dangerous. But the tunnel is long and you have no way out but moving forward. You are now at the mercy of the disease, in our case cancer. As you have chosen the dark tunnel you are now in the hands of the conventional holy trinity: surgery, radiation and chemotherapy. Should you dare suggest alternative medicine you are rapped on the knuckles or seduced. The way out of the long tunnel is to accept everything you are told, pay the money (in the US ~ 50000 $) and let out with a 5 year remission chance if you are lucky! But there is a catch you have submit yourself to regular investigations.
The problem is that this holy trinity does not cure you. It actually increases your risks of secondary cancers, another tunnel and more money in the bottomless pockets. You are never told that radiotherapy and chemotherapy are carcinogens and some remain toxic even after they are incinerated! And that is what has been poured into your veins. That you maybe affected in zillion of ways is never revealed to you before you begin.
How did all this happen?
The film gives a detailed account about how allopathy got the upper hand though when it all began there were two schools of medicines: allopathy and empirical medicine. One was brutal and the other in tune with the body, one used chemical weapons, the other on nature, in one case you died of the cure in the other of the disease. The bottom line is only the body can cure itself but we have forgotten that. From healing allopathy made medicine a business an what a business.
It goes like this. Big money entered the hallowed portal of healing. The hijacked the teaching universities and dictated what would be taught and what would be taught was what could make money. Every thing had to feed the big pharma industry. With surgery having become a viable option, hospitals were needed and then radiation was discovered and chemotherapy drugs. Drugs could be patented and the only way money could be made was by prescribing them with alacrity and impunity. health provided were seduced with gifts and goodies and in 2004 the pharma industry was estimated at hald a trillion dollars! In the 90s the big pharma took over teaching, licensing, drug testing and finally drug approval. If you got better or cured how would they earn so all they aimed at is what they called remission! Empirical medicine was renamed quackery. And anyway who would spend money on anything coming from nature as you cannot patent nature! The movie above relates how alternative medicines was crushed and riled.
Nature heals. Nutrition heals. But today's doctors know nothing about this. It is stated in the film that the Doctor's wives know more about nutrition than their husbands. Yesterday a friend dropped in. I was surprised to see how well he looked. He was glowing and looked years younger. This friend has serious health problems and had been told all kind of tales when he was in the US. He told me that he has seen this film some years ago and decided to leave the US as he knew he would be sucked into the dark tunnel had he stayed on. Since he had tried several alternative therapies with mixed results. I asked him what he did this time to bring such an extraordinary change. He told me he was on a raw diet and that is what had brought this miraculous change. He eats only raw vegetables, fruits, sprouts, nuts and seeds! He did say the first 2 weeks were not easy but now we would not go back to his eating habits as he felt so good.
Nature heals, chemical medicines do not. That is the bottom line. It is time we understood this and stop falling prey to the medical bizmess.
Diwali is the darkest night of the darkest period, yet it is a celebration of light! Diwali is heralded as the triumph of good over evil. This is a definition of Diwali I found and liked. Let today be the darkest night of my battle and a celebration of all the light that awaits me. The last year had been difficult but so empowering and blessed. This Diwali I implore the Gods of all the Pantheons in the universe to grant the dreams of all those who have stood by me and made my difficult journey a breeze. When a light one of the diyas painted by Shamika and her special children this evening as sun sets, I would like it to convey my undying gratitude to all the beautiful souls that have lit the dark road I had to embark upon at every step. One often forgets to express our gratitude to those closest to us. Love if often taken for granted. My first thought goes to Shamika who has silently and without fuss taken on the running of the house and made it possible for me to care for Ranjan. I am so proud to be her mom. Next comes Ranjan whose trust has been so complete that it is sometimes scary! And how can I forget the house staff Geeta, Deepak and Savita who have done everything I asked for with a smile and without reacting to the most inane demand.
My thoughts and blessings will also go to Mamaji, Rani and Dharmendra who have kept projecting why thriving and to all the staff of project why who made it possible. But they could not have done it without all those have trusted me for years and have made sure we have all the funds needed to carry on. I shall not name them. I know they will understand.
But above all I want to express my gratitude and love to all the people known and unknown who have stood by me and proved that people who see with their hearts exist in ample measure. Every little word that is written on my virtual world is proof of that and makes me stronger and more determined in my resolve to rid Ranjan of his cancer and make project why a sustainable and worthy effort.
Then there are the ones who wait for my morning mails and are there 24/7!
Last but not the least are my two little chaps who bring a smile on my tired face. My little Agastya who comes on Skype and makes me laugh and cry at the same time and his parents of course. My elder child who has always been my voice of reason and her dashing man who is a rock. And last but not the least Popples who settled down in his new school like a dream and made sure I need not worry.
This Diwali I want to celebrate life and love. For an only child who lived a nomadic life, I feel grounded and surrounded by so much love. I am blessed and overwhelmed.
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