Tuesday 31 December 2013

My desires, aims, aspirations and resolutions for 2014

Every year it is customary to make resolutions. It is almost a joke as they are broken quicker than they are made: the no smoking, exercising, etc etc. Some years I have too have made my list of resolutions and broken them with impunity and alacrity. Then as I grew older I stopped doing so, or of I did they remained in my head. So what got me to want to make a set of resolutions this year and not keep them inside me but write them for all to see. The answer is simple: Ranjan's  Cancer! The reasons are quite complex so let me elucidate them a little before I actually share that list. Ranjan's brush with the pearly gates as one has to admit that we were almost there, brought to the fore what is truly important and what simply depends on what is truly important. Confused? Read on. When we were all healthy and happy much of what I sought, or may be we all seek, was quite wild and even ludicrous. I will not even go there but let it just be said that everything that went of the list presupposed that we were healthy and happy. Then Ranjan started fading away and for one long year I groped helplessly for answers. In those days there was only one thing that could and would have gone on any wish list: Ranjan's health. All the rest was irrelevant. One could have offered me the moon, the money I needed for pwhy, a magic wand to rebuild my crumbling home and more, I would not have wanted it. I knew that the foundations of my existence and essence were held together by one man. I gave up all else for one mission: to get Ranjan back on his feet. We are not quite there, but the light at the end of the tunnel is now visible, albeit far away.

As I nursed Ranjan back to health I became aware of what was really important in life and what was frivolous and shallow. I also realised that nothing is eternal and much of what we want is mere hubris. We are not God and should never fall into that trap. We have a limited time on earth and with our loved ones but we have the choice to live life fully or waste it away skittishly.

Today on the first day of this New Year I have made a few resolutions. Here they are:

To be grateful for every moment we have
To live life at its fullest one day at a time
To be grateful for all the goodwill that has come my way
To keep in touch with friends as they are precious
To try and not fall into emotional and hurtful traps
To only think positive thoughts
To laugh and fill  life with happy thoughts
To look after loved ones but also myself
To say all that has been left unsaid even if it is difficult
To face every challenge head on and with dignity
To accept with humility the presence of a higher force and be eternally grateful for His presence.
To strive to complete all unfulfilled tasks, even those one has been shunning
To look at my face in the mirror every day and like what I see
To make gratitude my highest priority

I will end this post with a quote I love:

Write on your heart that every day is the best day in the year.”  — Ralph Waldo Emerson

Monday 30 December 2013

Wisely, like good children

The door bell rang. It was a parcel for me. A surprise as I was not expecting anything. Normally the parcels I receive these days are various supplements for Ranjan and things like soursop leaves and hemp seeds! AsI had not placed any order, this parcel with German stamps was something out of the blue. I was excited and opened it and out came tumbling loads of chocolate bars and boxes of chocolate truffles. And above all they all had the word ORGANIC written on them! They were a Xmas treat from a wonderful and generous person whom I consider my child. She knew how much Ranjan and I love chocolate. In the packet was a lovely letter. There was also a note saying that she had read my post on how bad sugar was for Ranjan and left it to me to decide what to do. I was tempted to hide the packet from Ranjan but then I simply gave in. How could I keep this wonderful gift from Ranjan and then they were organic, so I guess that made them kosher.

But that is not all. These chocolates were not simply some bars taken off a shelf and sent off. Each one of them was laced with love and overflowing with good wishes and they could not in any way harm Ranjan. They had been lovingly packed one evening and were accompanied by a letter that was filled with all that is beautiful and good. These were not sugar laden titbits. They were an expression of love and goodwill.

I rushed upstairs with the letter and a packet of truffles, sorry organic chocolate truffles, and stuffed one in Ranjan's mouth. The surprise and delight in his eyes was worth the world and more. He looked like a little boy getting his favourite treat. It was a precious moment.

We will eat the chocolates wisely like good children. I think we both deserve this.

Bless you Claudia!

Saturday 28 December 2013

The oxygen you need

I finally garnered the courage to write to my astrologer friend who has always been accurate about my future. I had delayed writing to him before as  I was apprehensive about what he would say, as he never sugar coats his predictions. But as we usher a New Year I needed to know what awaited us even if it was not what I hoped to hear. This is what he wrote:  Looked at Ranjan's chart. He has crossed the danger zone but unfortunately there will be after effects until June '14 since Shani antar is still on. A negative feeling of being useless will also have to be handled until then. You seem to be cleaning up things and from April 2014 you have a more constructive time with new people and stimulation giving you the oxygen you need. So on the whole it looks like both of you are moving forward after that terrible patch. I do wish you all the best and the strength to reconstruct.

I read and reread these lines. At times they looked frightening but at others they do seem positive. June 2014 is not so far away a mere 180 days or so and if we tread carefully than I am sure we can avoid the pitfalls or at least minimise them. I am not so naive as to believe that with chemos over everything will be back to what it was in 2012. His blood counts and the way they are behaving is ample proof that his bone marrow had taken a big blow. But as Doc P said this morning, the body is a miraculous machine and once it realises that there are no more underhand attacks it will spring back to its good old self, however let us not forget the Ranjan's miraculous machine is in its seventh decade so the going may be slow. We need to be patient, a virtue I sort of lack.

Now let us come to the feeling of being useless. Well it is just a matter of knowing and preempting it. I will have to delve deep into my bag of tricks and conjure new things that will make Ranjan feel useful. Why not revive a crazy dream of mine of learning to play the drums and then form a duo as Ranjan plays every instrument. I know I am fantasising but what the heck am I not the one who always tells my kids to dream huge as only if you dream big are you dreams fulfilled. And I discovered that you can buy a set of old drums on line for not much. I can just imagine the din in the house but with it the giggling sessions that I am sure will wipe the negative feelings at least for some time. But jokes aside, let me think of new activities for Ranjan.

Now let us come to the predictions about yours truly. My friend has hit the nail on the head. The last months have been filled with love and compassion but I must admit that I have been deprived of the oxygen one needs to thrive. True writing had helped me remain sane but I look forward to the day when I will accept that we have reached the point when I can resume life as it was. Maybe the drums will also help oxygenate me.

So the next six months look challenging. Let us get on with life!


Friday 27 December 2013

Life is uncharted territory...

Life is uncharted territory. It reveals its story one moment at a time goes the saying. Never have these words been more relevant than now. We are through with the chemo and now the mission is to strengthen Ranjan's depleted immune system. What will still remain for the times to come is regular blood counts. The counts last week were scary and in spite of booster shots the results I have just got are not great. His TLC is still way below the minimum acceptable of 4000. His are 2.3. That means that in spite of the shots that normally pump the white cells up dramatically - there was a time when they went from 3000 to 16000 - this time they only went up from 1500 to 2360 a tiny 736! His bone marrow is terribly suppressed. That is not the best news. In fact it is a red flag to remind us that we have a long way to go. So we have to let life reveal its story one moment at a time. Step 1 is to get the immune system kicking again.

Booster shots cannot be given forever. The way to go is nutrition and exercise. I have tried to give Ranjan a balanced diet all through his chemotherapy and it seems to have worked as he did not lose weight but now it seems that one will have to fine tune the diet.

I have been scouring the net for more information. The one food that seems to have a bad rating in every article is SUGAR! Now I know it is going to be a very uphill task to get Ranjan to eliminate sugar from his diet. Though I am sweetening his smoothies and other 'sweet treats' with alternative options, Ranjan still craves for sugar. Chocolates, biscuits, cakes and sweets. How do I convince him that sugar will have to be a no no for some time at least. We all know that even if his 11 chemos worked fabulously they could have only killed 80% cancer cells. 20% still remain and we absolutely do not want to give them what they love most: SUGAR. But that is what Ranjan loves most too: cheesecakes and chocolate brownies. I will have to find a substitute

What is recommended is much of what he has been eating. The only thing I guess I will have to do is increase the protein intake. His diet is mostly vegetarian though I give him eggs and fish and of course all plant based proteins. But it does not seem to have been enough so will need to add more protein rich foods. Funnily it is said that green peas are rich in protein and that is a win win situation as he loves green peas. The other possibilities are quinoa, chia seeds, nuts and nuts butter, beans etc. So new menus will have to be worked out.

The uncharted territory or new normal is undoubtedly going to unfold one moment at a time. It is definitely going to be a mixed bag with good and bad moments, fear and elation. A new roller coaster ride for Ranjan and I.


Wednesday 25 December 2013

We have come a long way

In the past months, I have often wondered how long it will take for Ranjan to be well again. Seeing him every minute of every day made it impossible for me to assess the progress, and my benchmark were the innumerable tests that he had to undergo an their see saw results.

It is said, and quite rightly so, that one often does not see things around us unless there is a reason. Our room is filled with pictures of the family, but I rarely find myself looking at them, and as I have not been the one who dusts the room for as long as I can remember, the pictures sit there, their presence a comfort though one rarely looks at them closely.

This morning, I happened to look at the pictures behind me and was shocked to find one of Ranjan and Agastya taken in July, when Ranjan was just diagnosed of Hodgkin's lymphoma. I was horrified to see how terribly ill he looked. See for yourself.


I just could could not believe my eyes! Next to this picture, sat another one taken a month or so ago.


What a long way we have come. It was heartwarming to see the difference.This is the first time I actually realised that notwithstanding the counts and results, he was definitely better. And this is the first time I saw a glimmer of light at the end of the long dark tunnel I am in.

Is this Santa's miracle?

Tuesday 24 December 2013

I would again like to believe in Santa today

There was a time when I believed like many children in Santa Claus. I was recalling some memories yesterday with friends and remembered the one Xmas - must have been in 1961 or so in Rabat - when I was convinced that Santa existed. That was the year I decided to put the existence of Santa to test in my own childish way. That year I refused to write my letter to Santa with my parents who then normally took the missive away, presumably to post it to Santa. That year, in spite of my parents entreaties, I wrote my letter secretly, put it in an envelope and addressed it to Santa and put it in the post box next to my home. I eagerly waited for Xmas morning and surprise found everything I had asked for. Santa has passed the test with flying colours. You must be wondering how that happened. The answer is that I had used and Embassy of India envelope and some kind person at the post office I redirected my letter to the Embassy where it had found its way to Papa's table!

It would  take me a couple of years to realise that Santa did not really exist.

Today I would again like to believe in Santa. My letter to him would read something like this.

Dear Santa,

This letter is not from a child from an old woman who desperately needs to believe in someone who would make her wishes come true. Today I ask you not for toys or games. Neither do I want gold, frankincense, or myrrh.What I seek today is for you to give me back my husband's health and rid him forever of the ailment that is ravaging is body. Today I want you to show me a sign that all will be well sooner than later. This is all I need.

You only fill the stockings of children who have been good for a whole year. I promise I have done everything  I possibly could to deserve the gift I seek.

Please do not forget me!

Anou

December 24th 2013

Merry Xmas to all. May Santa fulfil all your wishes, no matter what age you are!

Monday 23 December 2013

Don't ask!

 I met good old Doc P yesterday. I had gone to plan the medical side of the new normal for Ranjan. After we had done so, he looked at me and asked me how I was. My almost reactive answer was: don't ask! Doc P knows me almost better than I know myself. He decided to take some time in spite of his overflowing waiting room and talk. Remember it was in this very space that I got confirmation of Ranjan's cancer in July. On that fateful day it was in this space that my eyes welled with tears that remain unshed because I  willed them to. In the short time when silence spoke more than words, I felt my eyes moisten again and had to draw on all my strength to keep the tears from falling yesterday. I still cannot afford the luxury of a good cry, I know it will break me and as long as Ranjan is not out of the woods, tears will have to remain somewhere within me.

Doc P put on his counsellor's cap and spent some time saying the right things: that I had gone through a lot and had done a great job; that he knew I was on edge and that I had to be strong. I told him that I would remain strong and not let Ranjan down.

This brief interlude when I let my guard down, albeit for a brief instant made me realise how fragile I had become. It was just a trigger away from breaking down and that trigger could be anything: a word, an gesture, an act, a call, an email or a mere whisper. The only thing I knew was that it would not be about Ranjan. That was secure and steady as it was my life's mission. But my reality is larger than Ranjan's lymphoma. I have a home and a family and a larger family that all have depended on me for far too long and have not truly got used to my being AWOL.

So I gathered the troops yesterday and shared with them my state of mind and vulnerability and begged them to ensure that no trigger would come my way. My stress levels are high but is is a catch 22 situation as if I allow the adrenaline to drop, then I will not be able to fulfil my mission.

I am sure that those who love me will understand and that my ship will sail on calm waters.

Friday 20 December 2013

Timeout

It has a been stressful times since I don't remember when. I have been functioning on an adrenaline high and I guess will continue to do so till I truly believe that Ranjan is cured and Mr Hodgkin thrown out of lives for good. There is no time line, but I guess it will be when all Ranjan's counts are well above the minimum limits. No matter what, I cannot forget that his haemoglobin still hovers around a tiny 9. We have not touched double digits for almost 2 years. So there is still a long way to go and I cannot afford to let the adrenaline fall. Till now everyday has brought a new challenge keeping me on my toes.

But we all need a little break and I had a hilarious moment when I visited the Punk shop with Utpal, who wanted some strange looking hand cuff, and Emily. I could not resist picking up the outrageous wigs and trying one on. Emily was there to capture the moment for posterity:)

There were many wigs in all colour and hues and I remembered the man who had worn a tutu to make his wife laugh during her chemo sessions. I should have worn one of these and gone to the chemo day care. I guess it would have cause a riot, or perhaps, this being India, would have got security to throw me out of the premises. We lack humour at the best of times, and hospitals are meant to be serious bordering on grim.

On another note however, this is the closest I will ever get to be the long haired girl of Ranjan's dreams. You see he always wanted to marry a Rapunzel!


Thursday 19 December 2013

A taste of days to come

I was just starting to process the news of the cancellation of chemo 12, as I knew that the spontaneous elation we felt was to be short lived, and had just begun to plan days to come by visiting the Tibetan doctor when Ranjan's blood counts results landed on me. They had never been so low! I was hoping for the usual comforting and ever optimistic : don't worry from Doctor D but she looked at the figures and said nothing for a while, her brows frowning. She then looked up and stated: the WBC counts are alarming. They read 1.5. I have never see Doctor D react this way in the long years I have been visiting her. I jumped out of my skin and started babbling incoherently, totally unlike me! She told me to keep Ranjan away from people and any source of infection and get the counts done again after a week. Normally we gave Ranjan booster shots pre chemo, but this time his oncologist had said to wait and watch.

I was in panic mode. Doctor Paul, my reassuring GP, is away till Monday! I did not know what to do. I SMSd Doctor Vora several times. No answer. Normally he does respond asap. I waited for some time and then tried again. I cannot begin to tell you the state I was in. One was a the start line again and had no precedent to go on. I realised that this was a situation I would find myself in the days to come. The famous new normal was to be far more challenging than I had imagined. I realised I had to build a second defence line with alternate doctors that I could call should none of the front line was available. I was wondering how to go about it when my phone buzzed and I got a reply from Doctor Vora. I was to give Ranjan the booster shots and then get another count done a week later. The PET scan was also to be postponed. What a relief.

This incident gave me a glimpse of the days to come. Till Ranjan's counts are not 'normal' I guess there will be many such challenges. What I need to do now is find out all I can about ways to boost the bone marrow as healing and keeping cancer at bay depends on its functioning properly.

The New Normal


When Ranjan's oncologist told me that we could skip chemo 12 - this after I had pleaded that he had reached saturation point both physically and emotionally and actually told me in a touching moment that brought tears to my eyes that the best Xmas present would be no chemo 12 - I first a moment of elation, as if the clouds that had weighed on my head were suddenly lifted. All I could think of was that we did not have to live another chemo cycle, ever! My feet barely touched the ground as I flew out of the hospital and its sterile corridors where even the painting seem to frown at you and prayed for a quick drive home to share the news with Ranjan. It was a joyful homecoming when every one screamed and laughed.

I cannot exactly remember when, but suddenly I froze and realised that though it was indeed a joyful moment, it was just a fleeting moment. The enormity of what lay ahead hit me like the proverbial ton of bricks: the battle had just begun. Gone was the however despicable crutch called chemo which had surreptitiously lulled us into a false sense of safety. As long as chemo was on, we were lured by the reassurance that something was killing the cancer cells. The regimen that we all followed made us forget the harsh reality that Ranjan's immunity was under attack and his body getting saturated with poison by the minute. The booster shots that conjured fabulous blood counts made us forget that too easily. There would be no more shots to encourage us. Suddenly I felt totally alone and terrified. Life would never go back to what it was. Cancer, unlike other ailments, never leaves you. The fear of recurrence is real. It is up to you to address it and accept it with equanimity or let it spoil every moment of the days to come. Our new normal had first and foremost to deal with this fear. Whatever course of treatment we chose to follow, there would be tests and reviews with the angst they carry. What I could do is find out every thing that would help in ensuring that the crab would not crawl back and establish a new regimen that would guarantee success.

What goes in must come out says the old adage. So all the poison and dead cell residues would have to be flushed out and then his immune system would have to be practically resuscitated. There are many articles that talk about life after cancer, or life after chemotherapy! All talk about the new normal, and the fact that it takes long to reach this new normal! It is up to me to find the new normal pronto! All articles also mention the fact that there is no celebratory moment after treatment ends and that is something that both the patient and the family find difficult to accept. There is undoubtedly a feeling of nostalgia for days gone by.

Let us not forget that there are long term side effects after treatment : fatigue as counts are very low, depression and even anxiety. The biggest scare is that of infection and thus one has to keep very careful till one sees the counts taking an upward trend. This can be frustrating as one has the false 'all is well' feeling as treatment is over. I just go his blood counts and they are the lowest ever. This time there are no booster shots on the menu. I have just stopped him from going for a game of gold with his best friend as I am petrified of him catching a cold. So you see the new normal is not an easy ride.

I will spend the next hours or days finding out more and working out a schedule that helps us survive the difficult months ahead.

Hope you will follow the second part of this journey and give me the support you so generously gave as I need it more than ever.

Wednesday 18 December 2013

BREAKING NEWS

It is over! The chemo I mean! NO CHEMO 12! You heard me right no chemo on December 27th. Wonder how this happened? Well all within rules. Went to see Ranjan's oncologist and we had a long chat about Ranjan and he felt that there was no need for chemo 12. Just one PET scan and then follow up.

I jumped out of my chair and gave him the biggest hug. I had to pinch myself and restrain myself from shouting or jumping. The doctor felt that Ranjan's spirit and positive approach were far more important than one extra chemo that would not make much of a difference.

I had to pinch myself all the way back home. Ranjan's expression when I told him the news was a one in  a life time experience and mind blowing. I think the both of us are still processing the news. But had to share it with all of you who have stood by me at every minute of this battle.

But all this comes with a rider. We are now going to have to walk on broken glass as for the next 8 weeks or more he will have to be kept in a cocoon as his immunity is at its nadir and he is open to all sort of infections. His immune system will now have to take over and will need all the help to do so.

But before I start planning the next chapter of our lives, I am taking a day off to quietly celebrate this small victory. Tomorrow we get ready for the next chapter.

Tuesday 17 December 2013

We are the masters of our fate, we are the captains of our soul

With 2013 we will bid farewell to the now known and venture into new territories yet unknown. I am not naive enough to think that come chemo 12, Ranjan will be cured and life will once again be what it was in June 2012. I so wish this could be true but it has been many moons since I believed in Father Xmas. Life will never be what it was before June 2012 and never be what it has been till date. Come January and he will have to leave what is at best called a new normal. For perhaps the first time in our lives Ranjan and I will be truly masters of our fate and captain of our souls. Not everyone is given this second chance in life, a chance that comes when you are faced with an adversity you never wanted. But there it is and you have to face it. You could buckle in and give up. On the other hand you could dig deep within yourself for strength, resilience and fortitude you never imagined you have and make the adversity into good times. That is what the both of us sought to do.

I remember how after hearing the news of having lymphoma, Ranjan's first reaction was : I will beat the b******! This was even before the treatment course was set. I decided to call the lymphoma ZOZO, hoping to lower the status of Sir Hodgkin and make light of him. It was almost as if we were on a high, and we had reason to as it had taken us 13 months to find the cause of Ranjan waning away. I think that in those moments we had not registered what it all meant and what lay ahead. Then reality struck in the guise of a dreaded bone marrow biopsy and then a surgical biopsy and finally the dreaded chemotherapy. Ranjan had decided to go and get one of the 3 cancers that respond well to chemo. This was confirmed by the two people I trust most in matters of health: my Tibetan doctor and Doc P! So chemo it was and we decided to confront it head on. The doctor had said 8 or 12 and we all hoped it would be 8. But then remember Father Xmas. The chemos were hard but we still hoped for 8 but when the oncologist decided on 12, I must admit we were disappointed. But we soldiered on.

In the meantime I tried to find all I could about protocols and side effects, and the information I got was again not what I hoped for. I then realised how little the men in white reveal and how you are given information piece by piece and often have to worm it out cunningly. That is when you realise that the real battle lays ahead, after chemo time when your resilience is put to test.

To say that one has not thought of the worse case scenario would be a lie. Both Ranjan and I have talked of death and several times. Sometimes it has been light hearted with my saying that I would be a merry widow; at others it has been serious, each one comforting the other and easing out fears. Some may think it morbid to talk of death, but I feel that if we are to come out winners then all elephants in the room have to be exposed and addressed. Then they are out of the way.

That is when you realise that the time you have is not perdurable and this makes the second chance a reality. It is up to you to live life to its fullest or waste it in unnecessary pursuits. It is up to us to make the best of what we have and celebrate life with joy. This can only happen if we do not let any elephant in our space and share every thought however difficult it may seem. Sharing always makes things easier. I wish I had known this 40 years ago!

So come 2014 and we embark on a new journey with ope in our hearts and a song on our lips. We are masters of our fate and captains of our soul.




Sunday 15 December 2013

Listen to me please

We far too often underestimate and undervalue our brain. I have realised in the course of my existence,  how powerful the mind is in more ways then one. Our mind is the best healer we have at our beck and call and yet we rarely use it preferring to rush to our pill box and pop one not giving a thought to the harm it may do to our brain. Have you ever taken a moment to admire the working of our brain? I never did for long but now find myself taking that nano second to acknowledge its functioning. A word can trigger uncountable memories, so can a sound or a fragrance. But that is not all. Sometimes just lying down and letting your mind wander works far better than an analgesic.

I have also realised that medicine or therapies of any kind only work when your mind wills them too! If your are not in a positive frame of mind then no matter how good the medicine, it will not have the desired effect. On the contrary, it could work just the other way.

The mind/brain sends you messages that often go unheard. And then when we push it to a corner and ignore it, then comes the depression, the stroke, the heart attack! I have tried to keep Ranjan's morale as high as I could but since his last chemo I feel a pall of gloom descending on him. His initial will to fight zozo seems to be dwindling. I was really terrified when he told me yesterday that he may not live long as the dreaded crab had entered his body. He has forebodings about the next chemo that are almost visceral.

I know it is his brain talking, sending a message that it is saturated with toxins and cannot take any more. But who will listen. The doctors are blinded by their protocols and they treat every individual in the same way. But God made us unique, Dear Sirs, and gave us humans the capacity to think and make choices. But we too have fallen into the trap and forgotten to listen to our instinct and intuition. We listen to others but not to ourselves.

Why can we not stop at chemo 11? What is so sacred about chemo 12 when the body is screaming ENOUGH! But the darned protocol says 12. I wonder if it is about money, or targets or insurances, or simply hubris as it does not seem to be about the poor patient and his abused body.  Let us not forget that however successful the protocol, it can at best deal with 80% of the cancerous cells and that it is this very body that will be called upon to take care of the remaining 20.

I wish I could take that chemo 12 in my veins. It would complete the protocols and all other agendas and also make me go through what my poor love has gone through 11 times. I guess that I too, like all ageing human bodies have some cancerous cells dividing at that precise moment that would be destroyed, never mind the healthy ones that will die along the way. The protocol will have been followed.

Of pinhole cameras, fibrous roots, quadrilaterals and Ashoka the Great

The last chemo has been nerve wrecking for all of us. It is as if a pall of giving up has descended on all of us.The next 10 days seem eternal and time as heavy as Baudelaire's lid. Mercifully my little bundle of sunshine and endless energy a.k.a Utpal has landed for hi winter break: one whole month. For me it is good augur as Popples has always brought me luck and joy. This time it has come in the form three whole pages of homework! From english to hindi via sanskrit and of course maths, science and all the other subjects a class VI child had to learn. We both hate homework, but cannot do anything about it. Normally we fight and make up and do the tasks amidst tears and laughter. But this time homework has come as a relief as it will help me fill up the 240 hours left before chemo 12.

I am not cheating as in many places in the homework sheets we find the phrase: you may take the help of elders whenever needed! This time the phrase will be turned on its head as it is the elder who needs the help. So in between all other chores that have now become habitual, I am Od'ing on home work. This will entail hours of net search for subjects I learnt more than half a century ago; it will mean making charts, and maps and drawings. It will mean downloading pictures, getting them printed and then making files. How blissfully therapeutic!

God his kind and merciful! This time he appeared in the form of homework! Never thought I would welcome this!

Saturday 14 December 2013

When the one you love is hurting

When the one you love is hurting you fell utterly, totally, consummately helpless. Since yesterday, after chemo 11, Ranjan has been listless and completely zapped. For the first time since we started this darned therapy he admitted feeling confused. Chemo fog! My heart shattered seeing him like this. I did not know what to do, how to make it better, how to provide some relief. The toxins that have by now found their way in the tiniest crevices of his body and now mind are playing up and taunting me. At this moment it seems they have won the battle as Ranjan is refusing all the brews and cocktails that I proffer.

I just sit or lie next to him powerless, watching drift in and out of a disturbed sleep, listen to his mumbles trying to make sense of them but failing miserably. The TV may be on but I register nothing, I may have a book open at a given page but am incapable of reading a word, even if its the hottest thriller of the season. I too am lost in a fog of my own strangely also caused by the hated chemo though not a drop could have strayed my way. This is another brand of chemo fog, the one that is caused by your total uselessness in this moment.

The toxins will have to be flushed out slowly. The equation is skewed as the body is unable to eliminate all the toxins in the short 14 days between chemos, so there is a logjam that grows with quantum leaps leaving the body exhausted and knocked out. The total loss of appetite and the nagging nausea does not help much.

Each chemo has been more and more difficult for both of us. The euphoria of initial days has died down and given way to a sense of acceptance of the inevitable. Both of us are lost in an uncanny trance that will continue till the last chemo. Only then will we be able to take our first steps towards a new normal that will be ours to determine.

I only know that this new normal will be more perfect than anything we can imagine! So help me God!

Friday 13 December 2013

From Happy to Grumpy


Chemo 11 is over. It was not as bad as I expected. I guess compared to chemo 10 when Ranjan had high fever and terrible shivers, this one went on rather well. But of course he did not eat! He slept some and watched his Three's Company, a favourite TV show of his on his iPad. But as always he turned grumpy at the end of it as always. I do not know why I was reminded of Snow White's dwarfs!

Ranjan has always been the Happy one. For the past 4 decades I have rarely seen him in a bad mood, crotchety or churlish. If my memory is to be trusted I can only recall one incident where I saw his temper and I must say that I was the one responsible for his outburst. Anyone would have hit the roof. I can be infuriating at times. Those who know me well must be smiling!

Anyway for the past 6 months and for 11 times to be exact, Ranjan has turned from Happy to Grumpy in the span of a few hours during his chemos. To be honest, his Grumpy avatar is quite endearing though I wish he did not have to suffer the way he does. This lasts for the entire evening of chemo day till he sleeps. When he awakes he is back to his Happy self, though tired and miserable. Two days later he is his good old self and remains so for the next 10 days!

I will have to see one more Grumpy Ranjan on December 27th and then I will make sure that he remains Happy forever.



Wednesday 11 December 2013

Numbers Nine.. Eight.. and worries

Over the last months I have been concerned about Ranjan's low haemoglobin. When we found out that he had Hodgkin's lymphoma his haemoglobin was 7.2. After we began chemotherapy it climbed up to 9 and has been hovering between 9.2 and 9.8. This week it is again 9.2! It has never gone beyond the 9 range.

Chemotherapy can damages the body’s ability to make RBCs, so body tissues do not get enough oxygen, a condition called anaemia. Nearly all chemotherapy agents suppress the bone marrow that, in turn, causes a reduction in the number of blood cells and thus becomes  and the cause of chronic anaemia. I hope this is the reason for Ranjan's low counts. I wait with bated breath for the blood counts post the last chemo session cannot begin to imagine how it will all go. At present when Ranjan hit his nadir usually a week after his chemo, a set of injections were given to boost all the counts. The results are spectacular: from 3000 his WBC shoot up to 16 000 in the span of 3 days. But what will happen after the last chemo.

Yesterday's results were scary has the haemoglobin went below 9. It was 8.9 and this time the WBC did not climb above 4900 in spite of the booster shots. The oncologist of course said : no cause for worry!  For them the patient are just numbers and protocols.

I read that the blood counts will return to normal within three to four weeks, after the body's feedback system has told the stem cells in the bone marrow to increase production and begin making new cells, and hope that this is what will happen to Ranjan. The next sentence in the same article made my blood run cold: If chemotherapy is given at the time that the stem cells in the bone marrow are increasing their production this could cause permanent bone marrow damage. I was never told that and hope that the doctors knew what they were doing. It is nothing short of terrifying.

The big question is how long will it take for Ranjan's immune system to regain its lost abilities. The answers are confusing as most of the survivor blogs I have read give different numbers: from 6 months to 5 years and more. Some even say that it is never quite the same so I rephrase my question to how long will it take for Ranjan's immunity to get to its new normal. And the answer is: no one knows!

According to the WHO haemoglobin counts between 8 and 9 mean moderate anaemia. This where we are today. But there are two more chemos that have to be gone through. I am at my wit's end as it seems that all my support therapies and coping strategies are not working as well as they did. I will try and see if there is something else that I can do protect Ranjan's bone marrow that has become the most precious thing in my life.

A quick search on the internet reveals that shark liver oil helps the bone marrow. Then there is a supplement called astralagus that boosts the immune system. Studies have proved this fact. So this goes on the menu too. I guess I have a lot of research to do to be ready to face the post chemo days!

First Date

As I was asked by Ranjan a few days back if I would be his girlfriend, I thought it would be amusing to share with you our first date! It was truly picaresque. Before I go on, a little word about this picture. I looked high and low for a picture of Ranjan with his lovely curly black mop of hair, and realised that he had greyed so early that the choices were few. This is the best I found. You will understand how easy it was to fall in love with this fellow.

But back to the first date. For those who are of my vintage and lived in Delhi, you would remember where the Cottage Industries was located and its famous eatery Bankura that was located outside with wrought iron chairs and big pedestal fans. You had a choice of mutton, chicken or vegetable lunch. The mutton had two options: stew and cutlet. My favourite was the oily stew served with potatoes and boiled veggies and two slices of bread, all stuffed on a plate so that by the time you got it the bread had already soaked much of the sauce. It was yummy. So date no 1 was a lunch date and the venue Bankura. I had worn one of mama's saris, a yellow with red border if I remember well, high heels and though it was late February had not bothered to take anything warm. We were young and vain. I had thought that the date would be lunch and the proverbial Saturday afternoon English movie.

We settled down at a table and I was already to order my mutton stew delight when I realised that Ranjan was a little fidgety. Imagine my surprise when he said he would not eat anything. I wondered what was wrong! It took him a few minutes to tell me that he had to play a hockey match in Dhaula Kuan at 3pm and had to go home to change! He asked me if I would come along. I said yes without batting an eyelid! I could not have imagined what awaited me. Of course there was no mutton stew.

Ranjan had a scooter so sari, heels and I perched on it and we drove to his abode, a barsati on Malcha Marg. I followed him all the way up sari and heels notwithstanding and was impressed by how neat his room was. He opened his cupboard and changed behind it. I again did not bat an eyelid. It was down the stairs on the pillion of the scooter and more zipping.

We reached the army hockey ground wherever that was and suddenly I found myself seated on a bench and Ranjan muttered something and disappeared to join his team. I knew no one. I had no clue about what a hockey match was. And having not worn my glasses could barely make out Ranjan on the ground.

Mama and me had a deal. I had to tell her what time I would be back and not be a minute later unless I had called and informed her. I could see time flying and had no way of getting to a phone. Remember there were no mobiles then. When the match was over, I begged Ranjan to hurry up as my deadline was approaching. By that time, the weather had changed and it was getting chilly. We made another stop at his house so that he could lend me a sweater and get something warm for himself.

When we reached close to my house, I saw mama pacing the road. I hopped of the scooter, barely introducing Ranjan and hurried home ready for a dressing down. Mercifully it was not too bad. The rest his history.

That was our first date! A date to remember!

Of course we had had nothing to eat, but who needs food when one is in love!


Tuesday 10 December 2013

Will you be my girl friend

One of Hodgkin's best side effect is undoubtedly reconnecting with Ranjan, a delightful consequence of the forced seclusion we both have been subjected to, he because of his low immunity and I because of my determination bordering on obsession to see him well and kick Hodgkin's out of our lives. I think this is the first time in almost four decades that we have spent so much time alone together. For this I am eternally grateful to Sir H! These stolen moments have been replete with slowly ambling down memory lane and reliving sweet and bittersweet moments as well as more difficult ones. It has given us time to complete was was left unsaid, to ask forgiveness for the hurtful words that were never really meant.

I must admit that this would never have happened without the help of Sir H as I cannot imagine what else could have made us stop and give ourselves the much needed space we never had. never have you talked so much, laughed so much or just held each other in silence that said more than any word could. Never have we watched so much TV together, be it cricket or golf or cook programmes. Just sharing that time in perfect togetherness is worth the most precious thing on earth.

Imagine my surprise and elation when he turned to me yesterday and said: Will you be my girlfriend! I did not take me a second to say a big YES, just as I had when he asked me to marry me in a cinema hall in February 1974! Then he asked me have lunch at Fujiya, a restaurant close to where he lived in those days. I would have loved to say yes again but the memory of the oily Chinese food served in that place stopped me. The oily American chopsuey which was our favourite then with the over fried egg swimming on top was not something I could have him eat now. But how could I stop the memories that came gushing. I cannot remember the number of times we ate that oily food that tasted like manna from the Gods as it was laced with our love. We will definitely go one day and share a plate of the oily fare. But for today we need to take a rain check.

Sadly those were still days when photographs had to be taken with camera and rolls of films and I realise that I do not have any of our courting days but believe me Ranjan was a dashing young man. I must try and find a picture. I just found one of what I looked like then. A far cry from the old biddy!

Saturday 7 December 2013

The balancing Act

As I have often said along this blog, the men in white never tell you of all the side effects that may occur during and after chemotherapy. Here is a new one we discovered lately: loss of balance. For the past week or so I have seen Ranjan losing balance when he gets up or does something like slipping into his shoes, or reaching up for a shirt in his cupboard. Today I finally asked him whether he felt a loss of balance and his answer was affirmative. A quick search on the net confirmed that chemotherapy affects the nerves and one of the possible outcome is loss of balance. Others mentioned are : tingling, tired muscles, numbness in hand and feet, clumsiness, stiff neck, loss of hearing etc. Wow! Did not see this one coming. The scary sentence was : These symptoms usually improve when the chemotherapy dose is lowered or treatment is stopped; however, in some cases, the damage is permanent. So urgent damage control is needed.

A perusal of the possible causes was quick to identify the culprit: Vinblastine - the V of the ABVD protocol. One of the remedial action suggested is Physical therapy, to improve physical strength, balance, coordination, and mobility. So poor darling will have yoga on the menu and a lot of balancing on one leg eyes opened and eyes closed. Breathing and acupressure also help.

Must now look for other options. 

Friday 6 December 2013

Have a nice life

When a cancer patient asked her oncologist: when do I see you next, the answer was :You don't. Have a nice life! How easy it is for doctors to make such statements without actually thinking. I have heard so many that nothing surprises me anymore. Doctors of our times seem to have forgotten that they are dealing with individuals, each with their own fears, their unformulated questions, even their idiosyncrasies and they see the men in white as saviours and messengers of hope. But to a doctor a patient is just a series of medical abnormalities, jargon, statistics, acronyms and numbers. You have Hodgkin's lymphoma, stage 2B, your protocol is ABVD, 6 cycles of 2, 3 PET scans and have a nice life. Next please! But that is not quite as it goes.

Even if one is not a control freak like me, I guess every patient realises how shattered his body is after the toxic assault it has been subjected to. Every one wants to know how long it will take for the body to eliminate the toxins. How long will it take for the blood counts to begin their slow ascent to normalcy. How long will it take for the chemo fog to lift, for the fatigue to go, for the energy levels to rise. How long will it take to get back to normal if normal there is.

There will be elephants in the room both for Ranjan and for those who love him, elephants that one will be too scared to address, but that nevertheless have to be acknowledged if one is hoping for a semblance of normalcy. The fear of debilitating long term side effects, the fear of the darned hydra headed monster growing another head, the fear of the immune system never getting back to its good old self. Have a nice life assumes an entirely new meaning.

No matter how optimist or fatalist one is, the fears are real. Just like the fear that got the better of me when I read the words: ? lymphoma. It is human to feel frightened and only if you fear the fear will you be able to conquer it. I remembered  Nelson Mandela's words this morning and realised how true they were: I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear. It is only if you experience fear that you find the strength to conquer it.

I have resolved to acknowledge my fears and voice them loud and clear as I know I will conquer them. And if no one gives me the answers, I will find them and accept them even if they are not quite what one expected. The first step is to list down all the questions that are clogging my mind.

The first is of course: will everything go back to what is was like before. The answer is a big NO. There was a life before cancer and there will be a different one after cancer: BC and AC! Will the life after cancer be worse and again the answer is a big NO as it is in our hands to craft the new normal and as I had read somewhere it will take 66 days for this new normal to become a habit and hence 'normal'. So that is not too bad.

You may ask why I say with such confidence that our AC will be better. The answer is that in many ways it is already better than it was. I am not talking about the treatment and its acolytes. What I am alluding to is the quality of our emotional and personal life, the new found closeness, the myriad of well wishers and their love. I can say without an iota of doubt that life is happier and merrier. There is so much laughter, so much more time is spent together doing things we never did before: hilarious carom games, animated scrabble sessions where people with different mother tongues scratch their brain finding English words. There are also intimate moments when we revive memories of days gone by or share stories we never revealed. Skype calls with the grandson who laughs at nana and nanou's new hairdo. And let me tell you that this is and will be an integral part of our new normal. And how can I forget the gentle daily banter over the medicines that I proffer all along the day from the moment we get up to the instant we go to sleep. Not to talk of the brews and potions. That too will be part of the new normal. It looks good does it not?

But there will things to remember and keep in mind. The new normal will have its shades of grey. Ranjan's ravaged body will take its time to heal and we will all need to remember this and learn to live at his pace. He cannot jump back into old routines straight away. So life will have to be a gentle stroll with breaks whenever needed. We will all need to learn to listen to Ranjan's body. Something I have already learnt to do. Every sniffle, sneeze or twitch earlier ignored now has me jumping out of my skin. I will need to continue to do so, with perhaps a little more tact.

I know that in the best case scenario, there will be still be a certain percentage of cancer cells that need to be destroyed and only Ranjan's immune system can conjure that miracle. Hence the big priority will undoubtedly be getting his immune system back on track. I know there are many ways and will do some intensive research and share my findings in another blog. As his immune system springs back to normal, his fatigue will go and his risk of infection diminish. But here again there is no fix time line. Every body is unique and thus its healing is unique too! So many of the questions that disturb me today find their answer in one simple statement: boost the immune system to its earlier glory.

Food and supplements will help strengthen the immune system, but if you remember my one of my early blogs where I talked of jumping on a trampoline or rebounding as a way to boost immunity, life AC will have to include a lot of physical exercise. Walking, stretching and yoga. I tried my best to include as much of these as possible in the last months but chemo played spoil sport. No excuse now particularly if Ranjan wants to resume golf as in the BC days as fast as possible.

Let us not forget that mental stress is by far the most potent carcinogen. This is my strong belief. So the mind has to be pampered and stilled, with meditation, relaxation and happy thoughts. That is one thing I am going to ensure no matter what, even if I make more enemies along the way.

Now to the question about how long it takes to flush the toxins out of the system, a conventional figure is at least 6 months. The challenge is to cleanse the system. I do not see Ranjan embracing a stringent yogic regimen, so we will have to take it slow and easy. And we are talking of one helluva lot of toxins. In addition to eliminating chemical toxins and heavy metals from the body, says the New Hope Medical Center in Arizona, cancer patients need further detoxification support in order to remove the toxic load that comes from the death of cancer cells. Water is the best way to detoxify your body so I will make sure Ranjan drinks his 8 glasses a day and exercise gets the heart pumping, which circulates blood, moving toxins out of the body. It also encourages perspiration, which decreases toxins, and makes you thirsty, so you’ll drink more water. So excuses my darling. Then of course a lot of green juices but will talk of the diet and nutrition plan in another blog.

So I have my plate full and even overflowing. The one thing I want to say hear LOUD and CLEAR: We are going to have a nice life!





Thursday 5 December 2013

The fight is on

Perhaps my writing has been a bit nostalgic and a tad defeatist lately. Some of you may even be feeling I am giving up. NO WAY! I am as charged up as ever though it is true that the past months have made me review and rethink about life in a new light, hence there are moments when one feels a little blue. I guess these are also much needed breaks when the adrenaline is pumping, breaks that remind you of essential things that get swept under the carpet when you are on a mission as I am.

Then of course there is the overwhelming reality of chemo ending that entails conjuring new schedules and time tables. Batteries need to be recharged and a walk down memory lane does just that.

There is also the need to step off the spinning wheel and take a moment to look back at the months gone by and bow one's head in gratitude for all the blessings that have gone unacknowledged. I remember how frightened I was of all the terrifying side effects imputed to chemotherapy. The past months with 10 chemos went almost side effect free. What a blessing it has been. Ranjan who I thought would lose weight actually gained some, much to his chagrin as he had visions of remaining a size 0. What a blessing again. I do not want to dissect why this happened, whether it was brew x or brew z, the important thing is that someone guided me in the right direction and for that I am truly grateful and humbled.

I thought it would be a lonely battle, but far from that, I have never felt so loved and supported by people known and unknown who have reached out to me at every step. I again feel blessed and humbled.

The fight is on. It would be foolish to underestimate the adversary. But one should not either underestimate the army that stands in its way.

The fight is on!

Wednesday 4 December 2013

pieces of the past

To say that I have not been thinking of death in the past months would be a perfect lie. From the instant I came to know about the nature of Ranjan's ailment, death that was till then a philosophical idea so beautifully described by Oriana Fallaci when she writes: life is a death sentence, suddenly became a reality. The oft repeated words - if you are born than you have to die - assumed a new meaning altogether. Death that seemed so faraway became that much nearer. Mine more than anyone else's. Please do not take this as an essay in morbidity bur rather as a reflection on days gone by, a reminder of the items that still sit unchecked on the umpteen bucket lists one has made, a contemplation on one's existence and  walk down memory lane.

Yesterday as I sat alone, sipping a cup of tea in the rather formal drawing room we rarely use, my eyes wandered on the cornucopia of objects that fill every corner of this rather large space and a sense of nostalgia engulfed me. I was reminded of Ally Condie's words: It is strange how we hold on to the pieces of the past while we wait for our futures. Each object had a story to tell, a story that would die with me if I did not find the time to put in down in words. But then, I asked myself, who would be interested in the tales I wove as I know that to my kids, these rather encumbering and aged objects are clutter that they would have to get rid off as in today's world space is limited and costly and no one has rooms just to keep memories alive. Today's kids are practical and they should be. But I cannot get rid of these treasures as they are the repositories of my passage on earth. The reality is that they will find their end in some garage sale or maybe in some auction house. So be it.

However I would like to take that walk down memory lane and relive some of the forgotten moments of my life. Most of these objects were bought by my parents who travelled the world not for investment purposes but because they liked them. So you may have a very expensive object sitting next to a trinket, both imbibed with the same passion and both treasured in the same manner.

The chair you see in the picture is a Louis XV chair, but the tapestry was woven by my mother. She embroidered this in Vietnam in the sixties when my father had a difficult posting that kept me away in dangerous situation. Mama calmed her nerves by concentrating on her petit point reminding me of Penelope.

The amphora in the background is Ancient. It is from Halicarnassus, now Bodrum in Turkey and was embedded in the seabed till it was discovered. Papa had to seek special permission to take it out of Turkey and it was his price possession. One day our dalmatian was chasing a mouse and the amphora fell and broke. Papa was heartbroken and had tears in his eyes. It was my uncle who with extreme patience repaired it and though there are still some visible cracks, to me it remains papa's most prized possession even if thanks to Furiya our dog, it may be of no value today.

There are vases from China and crystals from Prague, lacquered objects from Vietnam and porcelains from Dresden. The innocuous looking cupboards are filled with priceless dinner sets Meissen, and Rosenthals some dating before the war. I still remember the piece de resistance of my mother's dinners which was a boned whole fish stuffed with innumerable things and served on the larger than life fish platter that barely fits in its present abode. The dainty demi tasses filled with strong coffee witnessed many dinners, some where royalty mingled with the diplomats, writers and ordinary people amidst laugther and cigar smoke, not to forget the colourful Sobranie cigarettes that mama loved and smoked occasionally making sure the colour matched her stunning saris.

So many memories, all tucked away in a ageing and tired brain but still having the ability to bring a much needed smile and a sense of well being I have no words to describe.

Tuesday 3 December 2013

To live is to be slowly born


A single event can awaken within us a stranger totally unknown to us. To live is to be slowly born” wrote Antoine de St Exupery. It is strange but the trails and tribulations of the passed 18 months have certainly brought to life a 'stranger' unknown to me. But more than that it revived  a relationship that began almost 4 decades ago. The stranger I refer to is me, and the relationship is of course the one with Ranjan. True we are older and a bit faded, but the past months have seen us closer than we ever were. We are slowly being reborn every day we live, in spite or rather because of the unwanted and unsolicited stranger that has crept between us. However I have made sure that no space exists between Ranjan and I, and hence Sir Hodgkin's has to deal with the both of us. For the past 6 months I have shared every moment of his troubling presence in a way I could not have imagined. That is the new me, or the stranger I refer to. I must admit I did not know I was capable of this and feel blessed.

For better or worse, in sickness and health, vows we hear so often have really come alive in this experience we today share. And ultimately it is  moments of crisis and adversity that put your love and commitment to test. I saw this in my father when Mama has cancer and did not want any treatment. He stood by her wishes and tended to her as you would to a child, respecting all her demands and idiosyncrasies, the most poignant one being her insistence on not going to sleep unless he sat by her and woke her up every 45 minutes. You see she did not want to die in her sleep. Today I truly understand him and hope I too can stand by Ranjan all the way.


chemo cocoon

It sounds like almost an aberration but seems like chemotherapy has been almost cocoon like for both Ranjan and I, and I guess others in the family and friends network. For the past 5 months we have been living in the 'false' comfort of chemo cycles. You see chemo has a timeline with an end in sight i.e the last chemo. Not so long back this last chemo looked far away, like a light at the end of a long tunnel and as we all trudged along willingly or unwillingly, there was a feeling that we were doing something right even if it had too many downsides. Cancer cells were being attacked and killed. Never mind the healthy cells that had to be slaughtered at the holy alter of conventional medicine. We all thought that the butterfly would break out once this nightmare was over. But that is not to be.

As the last chemo day approaches I am conscious of the fact that the cocoon season is not over and I must be careful to ensure that the cocoon matures fully before it morphs into a beautiful butterfly. That means that the body has to rest and recuperate before it can fly.

So December 27th is not the end of the tunnel but the beginning of a new one. It could be a wider one with more light, but tunnel it has to be till the cocooning time is over. Till now the word chemo was almost like a magic wand that called us to order any and every time the thought of digressing a little from the tight and unforgiving schedule. The idea of having a chemo delayed because of an infection was so scary that it took care of any want or even need. There was something strangely comforting about the chemo schedule.

Ranjan and I lost ourselves into the chemo routine and had some very emotional and touching moments. We never felt closer. At times, particularly on chemo day or the day after, Ranjan was so vulnerable that he almost felt like a little child that needed to be tended to and comforted. I spent many nights touching his brow to make sure that the dreaded fever had not raised its ugly face. As he slept next to me, I felt responsible for his well being and helpless when I could do nothing to make things easier. Then there were the days when he felt better and my heart swelled with love and pride. As we mentally checked each chemo off the calendar, a sense of elation filled us both and we talked about the end of the road.

But soon the chemo cocoon will be over. It will have to be replaced by another regimen that will have to be given a comforting name. This new normal that we have to work out together has to be able to assuage all the unsaid fears that will soon assail us if we are not watchful and prepared.


Monday 2 December 2013

The new normal

December 27th 2013 will be upon us sooner than one thinks. Time flies as you get older. So chemo 11 and 12 will happen in no time and with it the adrenaline rush that kept me going will peter out unless I find another mission to keep me going. I know that without a zealous mission the meltdown may just happen. So time to figure out what next. To think that things will resolve themselves once chemo 12 is over is naive and absurd. On December 27th Ranjan will begin recovering from his chemo and his counts will drop dramatically. This time there will be no booster shots, or so I think. This time his shattered body will have to pick up its pieces and try and build itself, slowly and patiently, hoping that no cracks remain.

I love this picture as it describes so well the state R will be in post 27-12-13. He will have to pick himself up and carry on, no matter what. It will be no easy task, with no defined time line. The totally misplaced idea that life will be normal again, just as it once was is a chimera. I guess we all held on to it to steer us through the difficult times when chemotherapy was on, but now it is time to face the reality that awaits us and break it gently to Ranjan. Life will never be normal as we knew it. We will have to build a new normal.

So what will this new normal look like. For one, for months to come, Ranjan will have to be kept away from any source of infection which sadly translates into limited mobility: no beers in crowded club pubs, no parties, no meals in crowded restaurants and so on. Doctors never tell you that life will be different after cancer treatment. On the contrary they fool you by telling you that all will be well. How can I forget the surgeon who told me that papa would be good as new after his surgery for colon cancer. He did not survive, but if he had, I shudder to think how he would carried on a normal life with his colostomy pouch.

In Ranjan's case, his oncologist continues to 'fool' us, by making it sound like all will be well after the 12th chemo. And somehow we have been lulled into believing it. But that is not the case. Chemotherapy keeps you from jumping into life again. It is not as if you got off the spinning wheel of life for a few months and can jump on again and hope all will be the same. In the US you now have cancer rehab that helps survivors overcome the new normal. We do not have these programmes here so I will have to conjure one for Ranjan.

It is believed that cancer survivors can face myriad ailments: pain, fatigue, weakness, immobility, cognitive impairment, sleep difficulties, sexual dysfunction, anxiety and depression. That is a whole lot to deal with. I guess one has to wait and see what happens and address each situation as it occurs in the best way possible.

Cancer treatment is not kind to the body and taking care of the body is what will be first and foremost on the agenda. The body has gone through hell and will now have to be molly coddled for all times to come. The new normal has to combine good diet with exercise on a daily basis. The weight has to be kept stable and thus physical activity is essential even if one is tired. The new normal is not easy and takes courage and determination.

The immunity has to to be built slowly. Blood counts will have to be done on a regular basis. The progress may be slow and frustrating, but one will have to keep the faith all the way. Not easy.



Chemo fog

For the past months or almost a year, I have been urging Ranjan to read or to brain games. Initially before we knew he had Hodgkin's, we though he was depressed and his psychologist and I urged him to read. But no matter how hard I tried, he barely did and sometimes got quite angry at my insistence. I could not understand what was wrong and continued to buy him books I thought he would enjoy. The pile next on his bedside table is proof of that.

Then we discovered the cause of his problems and began chemotherapy. I continued to try making him read books, but was not successful. I also realised that he had difficulty in concentrating and though he looked better in many ways, his reading ability seemed to be slipping. During my research on the multitude of side effects to chemotherapy no one ever tells you about I came across many blogs by survivors where they talked of chemo brain or chemo fog. It even has a medical name: Post-chemotherapy cognitive impairment (PCCI). It is now considered as a real, measurable side effect of chemotherapy that appears in many patients. Something the docs omit to tell you of course.

Chemo fog can manifest itself in many ways: from fatigue and a feeling of mental daze, to trouble with memory and attention span. Must keep a gentle vigil. The question is how long does it last and what can one do about it.

Chemo fog is due to the cumulative effects of the toxins poured into you with abandon. The toxin may target your cancer cells but also take a walk allover your system riding merrily on the blood they are injected in, and leave traces wherever they feel like: hence blue nails and chemo fog.

Chemo fog it is said is temporary and one can find ways of working around it. The obvious solution is lots of post its to remind you of things and lists. Can't quite see Ranjan doing that, I will have to become his walking POST IT!

But jokes apart, the obvious question is:how long does chemo fog last. The scary answer is that it can last longer than one would think. A study published in the journal of oncology suggests that it may last more than five years. Karen L. Syrjala, co-director of the Survivorship Program at Fred Hutchinson and the study’s lead author writes. “The real issue here is that recovery from cancer treatment is not a one-year process but a two- to five-year process. People need to understand the extent to which the cells in their bodies have really been compromised by not only the cancer, but also the treatment.” Good grief! Yet it is important to know, particularly for me and the others who support him. There is miracle we can expect after chemo 12! It will be a long and winding road with many ups and downs.

I am sure there are many ways to make things easier for Ranjan and for all those around him who care.The first is to accept that this is going to be a long haul. And then to find out what measures can be taken to help quick recovery. The picture above is a great starting point. I guess it gives a comprehensive view of life will look at after December 27th. What is needed is a good and potent cocktail of mental and physical exercise laded with a healthy diet and sprinkled with supplements. Not to forget a dash of spirituality and oodles of love. Sounds great. Now one has to workout the recipe and make sure Ranjan gets hooked.

There are on going many studies on the subject. There are on line training programmes, as well as studies on the efficacy of supplements such as Gingko Bilboa. I am sure that there are several other options that I will need to find.


Sunday 1 December 2013

AWOL

I have been AWOL for the past two days. Many of you would, I think, have expected an update after my last blog, as it was full on angst and despair. Yes that was when I talked of a hydra headed monsters and his 12 heads, 10 of which I have slain, of a fever that touched 103.3. You can imagine in what state I was! My mind on overdrive wondering whether the infection one at been able to keep at bay for 5 months had broken through the carefully erected defences. My fingers busy on the electronic key pad of my phone sending frantic messages to all the doctors I knew. The fever refusing to break. And then finally, one convinced a grumpy Ranjan (the only time I have seen him grumpy is on chemo day) to switch off the electric blanket, turn off the heater, take off his woollen cap and his sweater and remove the quilt, and the temperature fell to 102. Still worrying. But then the oncologist prescribed a medicine that did the trick. Would you believe if I told you that Ranjan even asked for the fan to be turned on. I did, for a few minutes as there was no scope for argument. But then the fever broke and he slept well while I kept vigil.

The next morning, Ranjan was as well as he is on day 2. And I decided to give myself a break and go AWOL. I needed to, as too many questions crowded my tired brain and I felt absolutely incapable of dealing with them unless I took some time off.

What did I do? Nothing much. Visited my favourite bookshop and browsed to my heart's content, did some window shopping and even bought a trinket and then tucked myself in bed with a book, but was asleep even before I could read a page. That was yesterday.

Today I took more time off. Got my nails done, yes my bitten to the quick! And then went to see Utpal and gorge myself on the oxygen laden air whilst watching him skate to his heart's content. No better feelgood shot!

Am back now. I think my mind is quieter and I can see the way. So more on that later.