View this video and you will see that the chemo story and success is based on the success of one case!
I know that should it happen to me, I go the other way!
Wednesday 31 July 2013
The Shocking History of Chemotherapy!
View this video and you will see that the chemo story and success is based on the success of one case!
I know that should it happen to me, I go the other way!
Life in the time of Cancer
Since the day we discovered that Ranjan had a lymphoma, life has taken a surreptitious 180 ยบ turn. Everything is on hold and I must learn to discretely weave the bits of my life I cannot give up. There is an elephant in the room. Whether we like or not. At best we can befriend it and accept as gallantly as possible that it will stay in our lives for the next 6 months. The problem with this elephant is that it takes all the space possible leaving you little too to breathe and do all the others things you need to. Whether I like it or not, I have to put my life on hold for the next 174 days.
The elephant room is chemo and the arsenal I have chosen to counter makes a very stringent time table. It starts at 6am and ends when Ranjan goes to sleep. So it covers at least 15 hours of my day. This time table necessitates stick adherence. Everything that goes down ranjan's throat has to be freshly prepared, never reheated so nothing can be made in advance. Vegetables and fruits need to be organic and thus sourced at different parts of Delhi. Calls need to be made to know when they are delivered. Then ranjan has to be coaxed to do things he does nor feel like: read, laugh but what is more important to make him talk and vent all that is bottled inside.
An eminent advocate of alternative medicines states that: people who tend to suppress anger are more prone to cancers than others. I for certain where Ranjan's cancer stems from. I also believe that if hegets it out, screams in rage, sheds angry tears and lets it out of his system by ultimately forgiving he will improve by leaps and bounds. So some time of the day is earmarked to help him talk. Not much success there.
Now in between all this, I have to sneak time to do the minimum needed for project why though my team is incredible, find some alone time to write and even to take a break and leave the house and the elephant. Not easy.
Must work on my coping strategies.
The elephant room is chemo and the arsenal I have chosen to counter makes a very stringent time table. It starts at 6am and ends when Ranjan goes to sleep. So it covers at least 15 hours of my day. This time table necessitates stick adherence. Everything that goes down ranjan's throat has to be freshly prepared, never reheated so nothing can be made in advance. Vegetables and fruits need to be organic and thus sourced at different parts of Delhi. Calls need to be made to know when they are delivered. Then ranjan has to be coaxed to do things he does nor feel like: read, laugh but what is more important to make him talk and vent all that is bottled inside.
An eminent advocate of alternative medicines states that: people who tend to suppress anger are more prone to cancers than others. I for certain where Ranjan's cancer stems from. I also believe that if hegets it out, screams in rage, sheds angry tears and lets it out of his system by ultimately forgiving he will improve by leaps and bounds. So some time of the day is earmarked to help him talk. Not much success there.
Now in between all this, I have to sneak time to do the minimum needed for project why though my team is incredible, find some alone time to write and even to take a break and leave the house and the elephant. Not easy.
Must work on my coping strategies.
Day five.... Godot still not with us
Day 5 went on well. Godot has not appeared.. I guess he is making his vile plans but I am ready with my arsenal. Just loosies for the moment. Appetite OK. Spirit high. Did some work, played the piano after months, watched some funny shows, read his historical novel. Slept. Ate all the food he was given, even the yucky tasting juice. But the piece de resistance of the day was learning a new way of playing chess. It is called the Agastya way! Lots of laughter. Hope it lasts.
Tuesday 30 July 2013
Day 4
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I am the anxiety ridden one as Ranjan keeps his legendary calm. I have confirmation on my theory that his cancer is man made or rather women made! A friend sent me some pages of Gary Null's Encyclopedia on natural healing and on page 122 it is written: people who tend to suppress anger are more prone to cancer then are others. I think the easy tears and rages we women are legendary for are a good to release all repressed feelings. I wonder why boys are told not to cry. One should cry, scream, rant and rave, bang doors and vent our rage.
Ranjan had a reasonably good day that ended on a high. A visit from his best friend P that turned out into a photography class for grandson Agastya with Ranjan as the subject!
Must cherish all these moments. They may help us go through the bad ones!
Waiting for Godot but this one will come
As this is my first and hopefully last encounter with chemo I feel a bit like the Bechkett's protagonists in Waiting for Godot. Only in my case Godot will come. Being a total neophyte in the matter, I did arm myself with all the knowledge possible about the side effects of chemo a.k.a chemchow (to make it less scary) and for this post Godot. The nausea, the weight loss, the hair loss, the blisters in the mouth, the fatigue, the tingling, the loss of sensation, the loss of appetite, the fever and God knows what else. And just like Vladimir an Estragon, I too need to divert myself to hold the terrible silence at bay! I do not have a pal to swats hats with and will not in anyway consider suicide, but I sleep, argue, stomp on the treadmill, listen to loud music, browse the shelves of my favourite book shop, peruse the net for more information: will Godot come on the 4th, 10th or whatever day.
The waiting is endless and killing. I even find myself puling at Ranjan's hair to see if it will come in my hands. I meticulously record all he eats, and how he feels in carefully designed charts. helps pass time. But time drags its feet. There are 175 more days to go. 4200 hours. 100 080 minutes! True they will interspersed with visits to doctors and hospitals, tests and more waiting for the results, moments of celebrations when things look good, stellar performance when things look bad so that the face does not show the disappointment. The list is endless but still does not fill the hours and minutes when you are left with just waiting.
I guess I will have to be prolific during these days and not have a writer's block!
The waiting is endless and killing. I even find myself puling at Ranjan's hair to see if it will come in my hands. I meticulously record all he eats, and how he feels in carefully designed charts. helps pass time. But time drags its feet. There are 175 more days to go. 4200 hours. 100 080 minutes! True they will interspersed with visits to doctors and hospitals, tests and more waiting for the results, moments of celebrations when things look good, stellar performance when things look bad so that the face does not show the disappointment. The list is endless but still does not fill the hours and minutes when you are left with just waiting.
I guess I will have to be prolific during these days and not have a writer's block!
Monday 29 July 2013
Divine justice
We often or should I say always remember God at times of need, what ever shape it may take - the hungry will pray for a just meal whilst the businessmen for a new contract- or at times when we feel - erroneously or selfishly - that justice has been denied to us. In those times we tend to forget our failings if any. We pray and petition that powerful entity to grant us justice in the manner we wish to see it granted, often blinded by our own hubris. We think we know all, and know best and are often blinded by the moment and its magnitude not able to see the big picture, a phrase my father use to pronounce whenever I was hurting, no matter what age I was.
Divine justice is fair, equitable and sometimes difficult to fathom. What makes it different is that unlike us, God also remembers all the other petitions and prayers we forget along the way and hands out His judgement at the times he thinks best. In his final pronouncement he also deals a blow to all our hubristic moments and puts us back in place. All your never say never are taken care of.
The first time I really felt the power of divine justice was when he took my father away. When mama died I had promised her to look after my dad till his last breath. When a few months later my husband was posted to Paris, a dream posting for us as both my daughters had studied in the French system, the promise I made to my mother came into the way of my going. At that time my father was in excellent health and no one could have ever imagined he would die within 29 days. I had been freed of my promise and he could be united with the woman he loved. God had intervened.
The past years have been clouded by a series of emotional upheavals of the worst kind drawing battle lines impossible to cross. In the middle of it all one person who took all the blows. On both side contradictory petitions to God and prayers and supplications. No human judge however wise could have found a way out. It was an imbroglio needing divine intervention. I suppose it was a tough one for God too! But the verdict has fallen taking care of all the past prayers and supplications, taking into account all our wrong doings and failings not to forget the never say never.
I had always prayed to have the full attention of my beloved who for too long was torn between two sides and bore too many blows that finally affected his entire being. For month and months we knocked at every door possible to find out what ailed him. My worse nightmare happened when the diagnosis was the one word I hated most: cancer! Bye bye hubris. Cancer it was. And this time the whole enchilada. I was terrified of chemotherapy. Well this time I had to live with it and conquer my fears. I wanted my husband 24/7. Well wish granted as my life is put on hold and for the next six months Ranjan and I are destined to live in a bubble! Just the two of us.
What the future holds, I do not know. Only he knows the whole picture.
Divine justice is fair, equitable and sometimes difficult to fathom. What makes it different is that unlike us, God also remembers all the other petitions and prayers we forget along the way and hands out His judgement at the times he thinks best. In his final pronouncement he also deals a blow to all our hubristic moments and puts us back in place. All your never say never are taken care of.
The first time I really felt the power of divine justice was when he took my father away. When mama died I had promised her to look after my dad till his last breath. When a few months later my husband was posted to Paris, a dream posting for us as both my daughters had studied in the French system, the promise I made to my mother came into the way of my going. At that time my father was in excellent health and no one could have ever imagined he would die within 29 days. I had been freed of my promise and he could be united with the woman he loved. God had intervened.
The past years have been clouded by a series of emotional upheavals of the worst kind drawing battle lines impossible to cross. In the middle of it all one person who took all the blows. On both side contradictory petitions to God and prayers and supplications. No human judge however wise could have found a way out. It was an imbroglio needing divine intervention. I suppose it was a tough one for God too! But the verdict has fallen taking care of all the past prayers and supplications, taking into account all our wrong doings and failings not to forget the never say never.
I had always prayed to have the full attention of my beloved who for too long was torn between two sides and bore too many blows that finally affected his entire being. For month and months we knocked at every door possible to find out what ailed him. My worse nightmare happened when the diagnosis was the one word I hated most: cancer! Bye bye hubris. Cancer it was. And this time the whole enchilada. I was terrified of chemotherapy. Well this time I had to live with it and conquer my fears. I wanted my husband 24/7. Well wish granted as my life is put on hold and for the next six months Ranjan and I are destined to live in a bubble! Just the two of us.
What the future holds, I do not know. Only he knows the whole picture.
Sunday 28 July 2013
Love in the time of cancer
We all remember the beautiful narrative of Gabriel Garcia Marquez (love in the time of cholera) when the protagonists found true love in their twilight years. We may also remember Albert Camus The Plague that shows the effects the terrible disease has on a whole city. For me it has been Cancer that has entered my world three times now. And no matter what anyone says, the beast in its various forms changes your life forever.
In Chapter one of its hold on me, it was my mother who was targeted. Her absolute and unequivocal defiance resulted in a strange drama played over 11 months. The protagonists were mama, papa, me and of course Cancer that actually set the tone. When you are dealing with someone with a terminal disease who refuses any form of known treatment believe me things are not easy. Conventional medicine with its set protocols do provide you with set milestones that you follow blindly. These protocols fill your spatio-temporal reality and provide mechanical props to make you feel your are doing something. Whether the something works or not is not in your hands but you feel you are giving the best available. Papa asked mama if she wanted to go to Sloane Kettering. Her answer was a candid no! So how would we fill the hours, days and months when we saw her fading away, wincing in pain, and slowing dying. She had her answers ready: hairdressers, beauticians, plays, outings, shopping etc. And she had her way. You did not argue with Kamala Goburdhun nee Sinha! What was being put to test was a husband's and daughter's love. I guess I feared poorly in comparison to papa. Watching him for those 11 months showed me what true love really was. He put his life on hold to attend each and every whim she threw his way. If he was ready to go out for an important errand and she wanted him with her, he simply took off his hat (papa was of the generation that did not leave the house without a head gear) and sat with her. The most poignant demand she had was towards the end. Has she did not want to die in a drugged sleep and thus had refused any form of medication, there came a time when she decided not to sleep. A deal was made: she would sleep in spurts of 45 minutes provided papa sat next to her on a stool and held her hand and woke her every 45 minutes. He did. Night after night till her very last night. When I asked him to rest and that she would not get up, his brusque answer was I gave your mother my word! It broke my heart to see my 80 year old father who was portly to say the least sit on that tiny stool and stroke his loved ones hand fulfilling the promise he had made. he past the test magna cum laude. I came a poor second as I was torn between my love for my mother and for my father. She had beaten all the protocols and won her battle her way and papa had fulfilled another inane promise she extracted from him of their first day of marriage: that she would die before him.
I know when the first cell in my beloved father's body went awry. It was when Kamala breathed her last, and I thought papa would break down and weep. He did not and took me in his arms and said softly I am here for you! But those words came with an unsaid caveat: as long as you need me! His pain had taken another road. That is when his cells began their morbid march. He was there for me all the time I needed him. But then came the day when Ranjan was posted to Paris. I should have been a moment of elation but two promises were came in the way of a father and a daughter. I had promised mama to never leave papa and he had promised me to be there till I needed him. But who would define the term "needed"? The march of the cells became deathly and though protocols were followed, the end had to come as otherwise the pledges would be broken. It took 29 days. He too had beaten protocols in his wise way.
In both cases Love was the main protagonist though none of us realised it. Cancer was just a a side role.
So the question I ask myself today as Cancer has taken hold of another one I love, what is the real motive this time. The dying as a bride does not apply, no real pledges have been made and need to be fulfilled. I still believe that Love again is the main lead. So whose love is being put to test? Or is it that our love that had been hijacked by others for so many years has finally come centre stage? Is the only way to catch up for lost times as Cancer has catapulted us in a tiny orbit where all else has to be but on hold. And will the big C leave my loved one so that we can enjoy peaceful and quiet twilight years?
In Chapter one of its hold on me, it was my mother who was targeted. Her absolute and unequivocal defiance resulted in a strange drama played over 11 months. The protagonists were mama, papa, me and of course Cancer that actually set the tone. When you are dealing with someone with a terminal disease who refuses any form of known treatment believe me things are not easy. Conventional medicine with its set protocols do provide you with set milestones that you follow blindly. These protocols fill your spatio-temporal reality and provide mechanical props to make you feel your are doing something. Whether the something works or not is not in your hands but you feel you are giving the best available. Papa asked mama if she wanted to go to Sloane Kettering. Her answer was a candid no! So how would we fill the hours, days and months when we saw her fading away, wincing in pain, and slowing dying. She had her answers ready: hairdressers, beauticians, plays, outings, shopping etc. And she had her way. You did not argue with Kamala Goburdhun nee Sinha! What was being put to test was a husband's and daughter's love. I guess I feared poorly in comparison to papa. Watching him for those 11 months showed me what true love really was. He put his life on hold to attend each and every whim she threw his way. If he was ready to go out for an important errand and she wanted him with her, he simply took off his hat (papa was of the generation that did not leave the house without a head gear) and sat with her. The most poignant demand she had was towards the end. Has she did not want to die in a drugged sleep and thus had refused any form of medication, there came a time when she decided not to sleep. A deal was made: she would sleep in spurts of 45 minutes provided papa sat next to her on a stool and held her hand and woke her every 45 minutes. He did. Night after night till her very last night. When I asked him to rest and that she would not get up, his brusque answer was I gave your mother my word! It broke my heart to see my 80 year old father who was portly to say the least sit on that tiny stool and stroke his loved ones hand fulfilling the promise he had made. he past the test magna cum laude. I came a poor second as I was torn between my love for my mother and for my father. She had beaten all the protocols and won her battle her way and papa had fulfilled another inane promise she extracted from him of their first day of marriage: that she would die before him.
I know when the first cell in my beloved father's body went awry. It was when Kamala breathed her last, and I thought papa would break down and weep. He did not and took me in his arms and said softly I am here for you! But those words came with an unsaid caveat: as long as you need me! His pain had taken another road. That is when his cells began their morbid march. He was there for me all the time I needed him. But then came the day when Ranjan was posted to Paris. I should have been a moment of elation but two promises were came in the way of a father and a daughter. I had promised mama to never leave papa and he had promised me to be there till I needed him. But who would define the term "needed"? The march of the cells became deathly and though protocols were followed, the end had to come as otherwise the pledges would be broken. It took 29 days. He too had beaten protocols in his wise way.
In both cases Love was the main protagonist though none of us realised it. Cancer was just a a side role.
So the question I ask myself today as Cancer has taken hold of another one I love, what is the real motive this time. The dying as a bride does not apply, no real pledges have been made and need to be fulfilled. I still believe that Love again is the main lead. So whose love is being put to test? Or is it that our love that had been hijacked by others for so many years has finally come centre stage? Is the only way to catch up for lost times as Cancer has catapulted us in a tiny orbit where all else has to be but on hold. And will the big C leave my loved one so that we can enjoy peaceful and quiet twilight years?
Day 2 with chemchow
Today was a sort of annoying day. None of the expected side effects you read about or are told bar two bouts of the loosies. Ranjan was restless the entire day. He felt fidgety in the legs was how he put it and thus could not do anything like watching a funny show or read a page. Called his doctor who prescribed some medicine but that made him sleep an hour or so and he is back to his restless self. Wonder what else is in store for me.
Saturday 27 July 2013
Day 1 with chemo... all you need is friends
First things first! The chemo needs a name; what about chemchow! What do you all think? Any better ideas??
So the first day living with chemchow was to say the least astonishing! In all the good ways possible.
Before I go on further I must share something personal. It was the first time in my life that I cursed my nomadic life however privileged. My dotting and dotty parents gave me everything except the possibility of having life long friends. Yesterday I understood the true value of friendship.
Here I was on day 1 with chemchow dreading nausea, loosies, lack of appetite, extreme fatigue (Ranjan was always sleeping before he was diagnosed) and all the gory things that I had read about on line and in the file given by the hospital.
I was imagining having to create 3 star Michelin food within the parameters of what is allowed.
But let me tell you the best recipe for battling chemchow: a brew made of your best pals, a basket of jokes and reminiscences, and laughter. When friends left, thanks to one of them ranjan discovered the magic of iPad in zozo mode! You need an iPad, earphones and access to the movies and shows that made you laugh. It was pure unadulterated pleasure to see him laugh. Those who know his laughter will understand.
So to recapitulate Ranjan had a good day! Ate all I gave him that was far from 3* Michelin. Laughed and had a great time in between he had 2 loosies and was a little tired so had to take away iPad so that he could sleep.
On the flip side guess who had nausea, loosies and anxiety: ME!!!!
So the first day living with chemchow was to say the least astonishing! In all the good ways possible.
Before I go on further I must share something personal. It was the first time in my life that I cursed my nomadic life however privileged. My dotting and dotty parents gave me everything except the possibility of having life long friends. Yesterday I understood the true value of friendship.
Here I was on day 1 with chemchow dreading nausea, loosies, lack of appetite, extreme fatigue (Ranjan was always sleeping before he was diagnosed) and all the gory things that I had read about on line and in the file given by the hospital.
I was imagining having to create 3 star Michelin food within the parameters of what is allowed.
But let me tell you the best recipe for battling chemchow: a brew made of your best pals, a basket of jokes and reminiscences, and laughter. When friends left, thanks to one of them ranjan discovered the magic of iPad in zozo mode! You need an iPad, earphones and access to the movies and shows that made you laugh. It was pure unadulterated pleasure to see him laugh. Those who know his laughter will understand.
So to recapitulate Ranjan had a good day! Ate all I gave him that was far from 3* Michelin. Laughed and had a great time in between he had 2 loosies and was a little tired so had to take away iPad so that he could sleep.
On the flip side guess who had nausea, loosies and anxiety: ME!!!!
Everything has a cause
I have always believed that everything has a cause. Maybe it is because of my having studied Philosophy! So cancer too has a cause. I am reading the Emperor of all maladies which is, as its author states a biography of cancer. I have not yet finished it so I do not what remains in its last hundred or so pages but down 300 pages I am not in total agreement with the causes espoused. Cancer is not like other diseases where a series of tests reveals the cause and defines the treatment. In cancer one fine day your own cells which have been following a rigid pattern decide to talk a walk and go free, multiplying at an exponential speed and hence causing havoc in the well regulated system they have followed till date.
Our brain is undoubtedly the most complex, intelligent and wondrous machinery you can imagine and would not change an iota. Its logic is faultless. But there is another part of our being, let us called them emotions, that play an important role that people often do not comprehend. Let us say that if the brain is the reason, than the emotions are the heart.
However strong our mind and brain are, they are not infallible and sometimes emotions an give them a shock it cannot withstand. That shock in my humble and laywoman's opinion is sometimes sufficient to jolt the well planned machinery into total disarray and start the inexorable march of cancerous cells. I know for certain that Papa's cancer was caused by mama's death.
It was heartwarming to hear that Ranjan's oncologist shares my view, in spite of its not being 'scientific'. I know why his cells took a life of their own. There is only that much anyone can take. When those you loved unconditionally let you down, not once but over and over again in ways that no sane human being can fathom; when they hurt your near and dear ones unabashedly and with impunity; when each step you take to heal backfires and brings more hurt then it is expected that something will shatter. Being a man you have been 'taught' not to cry, not to scream, not to express your hurt, then it is but evident that your body will 'talk' for you and your cells will go on wild ride.
That is what happened.
Our brain is undoubtedly the most complex, intelligent and wondrous machinery you can imagine and would not change an iota. Its logic is faultless. But there is another part of our being, let us called them emotions, that play an important role that people often do not comprehend. Let us say that if the brain is the reason, than the emotions are the heart.
However strong our mind and brain are, they are not infallible and sometimes emotions an give them a shock it cannot withstand. That shock in my humble and laywoman's opinion is sometimes sufficient to jolt the well planned machinery into total disarray and start the inexorable march of cancerous cells. I know for certain that Papa's cancer was caused by mama's death.
It was heartwarming to hear that Ranjan's oncologist shares my view, in spite of its not being 'scientific'. I know why his cells took a life of their own. There is only that much anyone can take. When those you loved unconditionally let you down, not once but over and over again in ways that no sane human being can fathom; when they hurt your near and dear ones unabashedly and with impunity; when each step you take to heal backfires and brings more hurt then it is expected that something will shatter. Being a man you have been 'taught' not to cry, not to scream, not to express your hurt, then it is but evident that your body will 'talk' for you and your cells will go on wild ride.
That is what happened.
Friday 26 July 2013
Night one
Ok Zozo aka Goliath you caught me unawares today. But this is the last time I assure you. I have a terrific team in my corner of the ring. Not only friends the likes of which you can NEVER have as who would love you, be there for you, care for you, pamper you and above all reveal all your secrets. But I have them starting from a wonderful doc who knows you better than you can ever imagine and above all has an arsenal to beat all you wily tricks. I have friends who are there 24/7 to stand by me and ensure your machinations and surprises are countered with laughter and joy. Then I also have a bag of ruses you do not know and master.
True I thought I knew everything about the side effects of chemo. So lesson 1: do not think you know all and be prepared for anything and everything. You will not be catch me again. I admit that the state Ranjan was yesterday when we brought him home was scary to say the least. I was taken aback when I saw him in a state I have never seen him in. He was aggressive, babbling away - that is my prerogative alone - confused, lost in time and space, uncooperative, and the exact opposite of who he is. But my wonderful doctors guided me through the episode and I beat it without having to resort to any medication. He slept and is still sleeping and I know he will wake up exorcised of you.
You are right when you say I am breaking inside and can have a meltdown. But you do not know of what steel I am made, you cannot begin to imagine my coping strategies where tears turn to ice and anger to cold hate!
You will have to break me before you can get him!
True I thought I knew everything about the side effects of chemo. So lesson 1: do not think you know all and be prepared for anything and everything. You will not be catch me again. I admit that the state Ranjan was yesterday when we brought him home was scary to say the least. I was taken aback when I saw him in a state I have never seen him in. He was aggressive, babbling away - that is my prerogative alone - confused, lost in time and space, uncooperative, and the exact opposite of who he is. But my wonderful doctors guided me through the episode and I beat it without having to resort to any medication. He slept and is still sleeping and I know he will wake up exorcised of you.
You are right when you say I am breaking inside and can have a meltdown. But you do not know of what steel I am made, you cannot begin to imagine my coping strategies where tears turn to ice and anger to cold hate!
You will have to break me before you can get him!
A very special day
It was a day I dreaded but the Gods were on my side and helped me all along the way. When you seek a miracle, it comes your way in the most incredible way, often putting you through a series of trials that may anger you.
When I came to know that cancer had entered by world again I was scared, angry and felt let down by the Gods I always prayed to, the ones my father told me never let us down.
I chartered a course that was in my opinion the best possible but things did not work and I was compelled to accept the way I liked least. I conceded defeat. What else could I do. The sight of big hospitals that look like five star structures are not what I like best.
The initial tryst was as I had expected: perfect but without heart and I am one who believes in the secret the Fox told the Little Prince in the wonderful book by St Exupery: here is my secret, a very simple secret: It is only with the heart that one can see rightly; what is essential is invisible to the eye. But seeing with your heart does not make good business sense.
I was dreading the 12 long days and other in between that would span 6 long months. How would I survive with those who only saw with their eyes.
But my miracle was in the waiting. It came in the form of a Little Prince (well not so little) who is a big doctor who plays around with toxic brews and finds the one that heals. As soon as he appeared I knew my payers had been answered.
True the toxic brew comes with its nasty acolytes.
I will take them on.
Because today I finally saw the hope I was so desperately looking for.
When I came to know that cancer had entered by world again I was scared, angry and felt let down by the Gods I always prayed to, the ones my father told me never let us down.
I chartered a course that was in my opinion the best possible but things did not work and I was compelled to accept the way I liked least. I conceded defeat. What else could I do. The sight of big hospitals that look like five star structures are not what I like best.
The initial tryst was as I had expected: perfect but without heart and I am one who believes in the secret the Fox told the Little Prince in the wonderful book by St Exupery: here is my secret, a very simple secret: It is only with the heart that one can see rightly; what is essential is invisible to the eye. But seeing with your heart does not make good business sense.
I was dreading the 12 long days and other in between that would span 6 long months. How would I survive with those who only saw with their eyes.
But my miracle was in the waiting. It came in the form of a Little Prince (well not so little) who is a big doctor who plays around with toxic brews and finds the one that heals. As soon as he appeared I knew my payers had been answered.
True the toxic brew comes with its nasty acolytes.
I will take them on.
Because today I finally saw the hope I was so desperately looking for.
Day one
Entering the hospital... Looking stunning... Or so I think!
Waiting for his PET
beware radioactive man the new superhero
Thursday 25 July 2013
Etat Second
Etat second. I have always liked this expression. One of the dictionary meaning is: the state of mind into which some writers go when writing short stories. It mixes abstraction and concentration at the same time, ironically telling sometimes more facts than in conscious writing. Others call translate it as: trance!
I have used the expression in a slightly different way all through my life. To me Etat Second means a period of time when you step off the planet for some reason, and enter a parallel zone when your life is dictated by extraneous reason. It could be something as mundane as an examination, as credulous as your first heartbreak or as is the case now as harsh as chemotherapy.
Stepping into an Etat Second means giving up life as you know it and following the strict and inevitable regimen of the cause of your having to this. Your life is then dictated by a set of dates separated by a fixed number of days with each having its own diktats. One thing is certain you cannot change the protocol and anything else your normally do from caring for yourself, to pursuing your coping strategies, to completing your work responsibilities, to finding your 'alone' time, to having a cup of tea with a friend, to just taking a break has to be sneaked into the little moments where your loved sleeps, or is having a better moment.
The first 15 days will be a learning experience for everyone. R will have to learn how is body tolerates and reacts to the deadly cocktail that will be pumped into him and I will have to deal with each of these fighting the right strategy to counter the side effect: be it nausea, blisters in the mouth or exhaustion. We will need to conjure meals he can ingest and then hopefully enjoy. They will have to be presented in diverse ways to break the monotony as how inventive can you get with soup and smoothies!
Normal activities like bathing and dressing will also have to follow a new pattern. Bad days and good days will have to be carefully noted and numbered so that the next cycle is better organised and less exhausting. And this for the next six months, day after day after day.
Today is the last day of life as I have lived it. Tomorrow I enter my etat second.
Wish me luck!
I have used the expression in a slightly different way all through my life. To me Etat Second means a period of time when you step off the planet for some reason, and enter a parallel zone when your life is dictated by extraneous reason. It could be something as mundane as an examination, as credulous as your first heartbreak or as is the case now as harsh as chemotherapy.
Stepping into an Etat Second means giving up life as you know it and following the strict and inevitable regimen of the cause of your having to this. Your life is then dictated by a set of dates separated by a fixed number of days with each having its own diktats. One thing is certain you cannot change the protocol and anything else your normally do from caring for yourself, to pursuing your coping strategies, to completing your work responsibilities, to finding your 'alone' time, to having a cup of tea with a friend, to just taking a break has to be sneaked into the little moments where your loved sleeps, or is having a better moment.
The first 15 days will be a learning experience for everyone. R will have to learn how is body tolerates and reacts to the deadly cocktail that will be pumped into him and I will have to deal with each of these fighting the right strategy to counter the side effect: be it nausea, blisters in the mouth or exhaustion. We will need to conjure meals he can ingest and then hopefully enjoy. They will have to be presented in diverse ways to break the monotony as how inventive can you get with soup and smoothies!
Normal activities like bathing and dressing will also have to follow a new pattern. Bad days and good days will have to be carefully noted and numbered so that the next cycle is better organised and less exhausting. And this for the next six months, day after day after day.
Today is the last day of life as I have lived it. Tomorrow I enter my etat second.
Wish me luck!
Wednesday 24 July 2013
First sleepless night and counting
I spent a sleepless night. Just like I had 21 years ago on the even of papa's operation. One again I carry the burden of a decision the consequences of which a loved one will have to bear. This is something no one can understand as it is deeply personal and would probably be miffed at by one and all. But I need to share this as it is perhaps my way of seeking absolution or rather getting one step further on the road of forgiving myself and I am likely to carry this to my grave. Forgiving yourself for any hurt caused to another is quasi impossible. But I as we are about to start a battle for life, I feel it is important to be brutally honest.
For one year and even more we tried desperately to find out why R was ill. He was losing weight, had intermittent fever and cold sweats. We went though every investigations imaginable and never could get a satisfying diagnosis. Today when I look at the symptoms of Hodgkin's or any other lymphoma they stare at me with a wicked sneer almost saying: Got you! And they did, maybe also because of my petrifying fear of the word Cancer! So what we were doing is looking for all other causes possible. In my pathetic defence I can say that R's lymphomas were well hidden and not in the usual more visible places. And while we ran this scary 'treasure' hunt R was fading away. Finally we got the results and because of its delay he has B cell lymphoma which is probably 2nd stage or more.
I spent the night going through the last year and trying to see whether I had missed out on something; whether there had been some indication that we failed to understand. Whether we could have caught it earlier. It is no point on crying on spilled milk. But I know I will carry this all along my life and each time I look at R.
I also realised in the course of my white night that though R has been with me all the time, I always see him with the eyes of my heart. Yesterday evening as we sat in the drawing room listening to Tom, one of our volunteers play some haunting classical music on R's piano that I caught a glimpse of him as he really has become. For the first time I saw the 75 kilo man weigh 61 kilo. It was a rude shock and a new guilt choked me. Could I have stopped this? And then the dreaded: Oh my God, he will loose more after his chemo. I have to master the art of seeing him as with my heart and not as he is. It would kill me.
And then the whole guilt trip all over again.
It has to stop.
For one year and even more we tried desperately to find out why R was ill. He was losing weight, had intermittent fever and cold sweats. We went though every investigations imaginable and never could get a satisfying diagnosis. Today when I look at the symptoms of Hodgkin's or any other lymphoma they stare at me with a wicked sneer almost saying: Got you! And they did, maybe also because of my petrifying fear of the word Cancer! So what we were doing is looking for all other causes possible. In my pathetic defence I can say that R's lymphomas were well hidden and not in the usual more visible places. And while we ran this scary 'treasure' hunt R was fading away. Finally we got the results and because of its delay he has B cell lymphoma which is probably 2nd stage or more.
I spent the night going through the last year and trying to see whether I had missed out on something; whether there had been some indication that we failed to understand. Whether we could have caught it earlier. It is no point on crying on spilled milk. But I know I will carry this all along my life and each time I look at R.
I also realised in the course of my white night that though R has been with me all the time, I always see him with the eyes of my heart. Yesterday evening as we sat in the drawing room listening to Tom, one of our volunteers play some haunting classical music on R's piano that I caught a glimpse of him as he really has become. For the first time I saw the 75 kilo man weigh 61 kilo. It was a rude shock and a new guilt choked me. Could I have stopped this? And then the dreaded: Oh my God, he will loose more after his chemo. I have to master the art of seeing him as with my heart and not as he is. It would kill me.
And then the whole guilt trip all over again.
It has to stop.
The journey begins
On Friday 26th July we being R's chemo. It will preceded by a PET scan (Positron emission tomography) which I believe is absolutely imperative! I am not happy as these scan pass a radioactive substance through your body and that has the risk of radioactive exposure. But I agreed because the Doctor we met was extremely nice and just the kind of Doctor I had prayed for. He explained every step taking his time to answer my most inane questions. So my prayer for the right Doc was answered. With the present investigations we have in hand he confirmed a stage 2 B. But we still await the bone marrow results. If these are good then it is 2B. If not it is 3 or 4. In the better case the chances of cure are 60%, in the worst they are 50%. The other 50% is in the hands of God.
There will be 12 chemo sessions over the next 6 months so the journey ends on 26 January 2014. According to Dr Vora the worst sessions will be the last 2 when one is fed up of the whole thing. We plan to place a line on the next session as it will make things easier. That will be a minor surgery. I really hope they do as R is very fidgety when he has an intravenous line in his arm. We saw that when we did the first transfusion. In this case we cannot have him move and run the risk of the medicine spilling out. Must find a way of sorting this one!
The side effects are there: nausea that can be controlled, extreme fatigue and weight loss and of course the dreaded hair loss. I intend to shave my had when his hair falls and keep it that way till his comes back.
So this is the news.
The processing has not begun, neither in my head nor his.
I guess the next blog will have the anger, pain and the rest.
There will be 12 chemo sessions over the next 6 months so the journey ends on 26 January 2014. According to Dr Vora the worst sessions will be the last 2 when one is fed up of the whole thing. We plan to place a line on the next session as it will make things easier. That will be a minor surgery. I really hope they do as R is very fidgety when he has an intravenous line in his arm. We saw that when we did the first transfusion. In this case we cannot have him move and run the risk of the medicine spilling out. Must find a way of sorting this one!
The side effects are there: nausea that can be controlled, extreme fatigue and weight loss and of course the dreaded hair loss. I intend to shave my had when his hair falls and keep it that way till his comes back.
So this is the news.
The processing has not begun, neither in my head nor his.
I guess the next blog will have the anger, pain and the rest.
A song that says it all
There's a new world somewhere
They call the promised land.
And I'll be there someday
If you will hold my hand.
I still need you there beside me
No matter what I do
For I know I'll never find another you.
There is always someone
For each of us, they say.
And you'll be my someone
Forever and a day.
I could search the whole world over
Until my life is through
But I know I'll never find another you.
It's a long, long journey
So stay by my side.
When I walk through the storm
You'll be my guide, be my guide.
If they gave me a fortune
My pleasure would be small.
I could lose it all tomorrow
And never mind at all.
But if I should lose your love, dear,
I don't know what I'd do
For I know I'll never find another you.
But if I should lose your love, dear,
I don't know what I'd do.
For I know I'll never find another you.
Another you.
Another you!
They call the promised land.
And I'll be there someday
If you will hold my hand.
I still need you there beside me
No matter what I do
For I know I'll never find another you.
There is always someone
For each of us, they say.
And you'll be my someone
Forever and a day.
I could search the whole world over
Until my life is through
But I know I'll never find another you.
It's a long, long journey
So stay by my side.
When I walk through the storm
You'll be my guide, be my guide.
If they gave me a fortune
My pleasure would be small.
I could lose it all tomorrow
And never mind at all.
But if I should lose your love, dear,
I don't know what I'd do
For I know I'll never find another you.
But if I should lose your love, dear,
I don't know what I'd do.
For I know I'll never find another you.
Another you.
Another you!
Emotional Bank
Battle lines are drawn. There is no going back. Would love you to leave a comment to keep my emotional bank afloat. I will need to draw on it at every moment. Need your support.
My previous brushes with the new C
Chemotherapy and I have had some fleeting trysts. My mother Kamala gave us a few scares as before she actually was attacked by cancer, she had a had a few lumps that needed to be excised and then the ensuing biopsies. Thankfully they were all clear with no malignancy but in hindsight I think they did one big damage to Kamala's mind and spirit: they made the fear of cancer take over her life. By that time chemotherapy was talked about a lot and its side effects were almost commonplace. Along the way they surreptitiously embedded themselves in her mind and instilling a fear that I guess she did not even understand but triggering a response and a road map that she would follow when the time came.
When the opacity in her lung was diagnosed in the summer of 87 the had a small stroke, or so one thinks. She fainted for a few minutes and when she came out of the faint she behaved as if she had lost her recent recall memory and travelled in the past to happier times. Each time we would suggest any form of conventional investigation a stubborn little child appeared and threw a tantrum no one could control. Once she had won her game, she would retreat back into the past. In hindsight again I am convinced that it was more of a crafty game she would play when needed: refuse a CT scan, run out half clad of the one she was coaxed into, refuse any medication and so on. We only guessed she had cancer of we quite do not know what but which gnawed at her slowly in front of our helpless eyes. he pains did come. Horrible and excruciating but she bore them telling us that when she screamed she felt better. How could we tell her it was killing Papa and I.
She bore it all with rare dignity and grit. At one point she stopped anyone from helping her bathe. She did not want anyone except Papa to see her ravaged and emaciated. Once she was partially dressed, I took over combing her hair, applying her make up - she had to every day till the last - and then come out to take on the day. As in her game she had to be the one who had lost her recent memory, she would go along with the ploy papa had come up with: write a daily diary under his dictation so that if someone came she could find an excuse to pop into her room and read the previous day' entry and engage in a normal conversation.
Till the moment she breathed her last, the word C was not mentioned in the house. And as far as any treatment was concerned it was a big no no! Kamala did not want to loose her hair. Actually I think she knew that there was much more at stake and she had somehow decided that she had paid her tithe over and over again to the medical fraternity and the world of allopathy. Now she wanted to live on her own terms. Without hospitals and people in white, and needles in her arms in tubes down her throat. When Papa mentioned Sloan Kettering she answered Habib Sahib! The noted Habib was her coiffeur and believe it or not he use to come and do her hair at home. She had a beauty session every day: her feet, her hands. An aunt who had done aromatherapy came daily to massage her. Papa took her out to lunch and they discovered all the new restaurants that opened. She went to plays, impeccably groomed and enjoyed herself. It was only in the last few weeks of her life that she suffered pain. But she refused any palliative care as she wanted to LIVE aware till her least breath.
She died in my arms. She had won her battle against chemotherapy in her own inimitable way.
As I said earlier, Mama played a game she invented and set the rules of. And she duped us all. Hers was a star performance. How could I have not guessed it as there were moments when she showed her legendary lucidity and wisdom. Was she not the woman who had taken her life in her own hands at a time when young girls simply followed set rules. She studied when no girl did, decided not to marry till her country was independent; drove trucks into the boonies to give women their rights; live alone in a big city when girls barely stepped out of the house. Then how could she have succumbed to simple fear. No she once again wanted to live and die on her own terms.
She once told me that she would have borne all the ills of chemo had I been a child and needed her, but she has seen it all: her son-in-law, her grandchildren and she had extracted a promise from her beloved husband on the first day of her marriage: she would go before him and dressed as a bride. She did.
The C word appeared again in my life 16 months later. We had been posted to Paris but I was bound by a promise I have her on her dead bed: to look after papa till his last day! Papa was in good health and our departure was scheduled a month ahead. I shared my angst with him and he told me to leave it to Guru Maharaj. I was surprised by his words but said nothing. A day later he told me he was bleeding but felt it was his old piles. We went to the doctor. It was cancer of the colon and I was caught in the vortex of medical protocols: surgery, chemo... He was operated upon and died 29 days later. Chemo never entered my life. He too had will his exit!
Now in 3 hours I will again be caught in the same eddy but this time it seems I have no escape. Only time will tell how the battle goes.
When the opacity in her lung was diagnosed in the summer of 87 the had a small stroke, or so one thinks. She fainted for a few minutes and when she came out of the faint she behaved as if she had lost her recent recall memory and travelled in the past to happier times. Each time we would suggest any form of conventional investigation a stubborn little child appeared and threw a tantrum no one could control. Once she had won her game, she would retreat back into the past. In hindsight again I am convinced that it was more of a crafty game she would play when needed: refuse a CT scan, run out half clad of the one she was coaxed into, refuse any medication and so on. We only guessed she had cancer of we quite do not know what but which gnawed at her slowly in front of our helpless eyes. he pains did come. Horrible and excruciating but she bore them telling us that when she screamed she felt better. How could we tell her it was killing Papa and I.
She bore it all with rare dignity and grit. At one point she stopped anyone from helping her bathe. She did not want anyone except Papa to see her ravaged and emaciated. Once she was partially dressed, I took over combing her hair, applying her make up - she had to every day till the last - and then come out to take on the day. As in her game she had to be the one who had lost her recent memory, she would go along with the ploy papa had come up with: write a daily diary under his dictation so that if someone came she could find an excuse to pop into her room and read the previous day' entry and engage in a normal conversation.
Till the moment she breathed her last, the word C was not mentioned in the house. And as far as any treatment was concerned it was a big no no! Kamala did not want to loose her hair. Actually I think she knew that there was much more at stake and she had somehow decided that she had paid her tithe over and over again to the medical fraternity and the world of allopathy. Now she wanted to live on her own terms. Without hospitals and people in white, and needles in her arms in tubes down her throat. When Papa mentioned Sloan Kettering she answered Habib Sahib! The noted Habib was her coiffeur and believe it or not he use to come and do her hair at home. She had a beauty session every day: her feet, her hands. An aunt who had done aromatherapy came daily to massage her. Papa took her out to lunch and they discovered all the new restaurants that opened. She went to plays, impeccably groomed and enjoyed herself. It was only in the last few weeks of her life that she suffered pain. But she refused any palliative care as she wanted to LIVE aware till her least breath.
She died in my arms. She had won her battle against chemotherapy in her own inimitable way.
As I said earlier, Mama played a game she invented and set the rules of. And she duped us all. Hers was a star performance. How could I have not guessed it as there were moments when she showed her legendary lucidity and wisdom. Was she not the woman who had taken her life in her own hands at a time when young girls simply followed set rules. She studied when no girl did, decided not to marry till her country was independent; drove trucks into the boonies to give women their rights; live alone in a big city when girls barely stepped out of the house. Then how could she have succumbed to simple fear. No she once again wanted to live and die on her own terms.
She once told me that she would have borne all the ills of chemo had I been a child and needed her, but she has seen it all: her son-in-law, her grandchildren and she had extracted a promise from her beloved husband on the first day of her marriage: she would go before him and dressed as a bride. She did.
The C word appeared again in my life 16 months later. We had been posted to Paris but I was bound by a promise I have her on her dead bed: to look after papa till his last day! Papa was in good health and our departure was scheduled a month ahead. I shared my angst with him and he told me to leave it to Guru Maharaj. I was surprised by his words but said nothing. A day later he told me he was bleeding but felt it was his old piles. We went to the doctor. It was cancer of the colon and I was caught in the vortex of medical protocols: surgery, chemo... He was operated upon and died 29 days later. Chemo never entered my life. He too had will his exit!
Now in 3 hours I will again be caught in the same eddy but this time it seems I have no escape. Only time will tell how the battle goes.
Tuesday 23 July 2013
Conquering the other C
In a few hours we will be meeting the oncologist who will lead the team that will administer the chemo to Ranjan. Most probably the 'protocol' followed will be ABVD ( doxorubicin - Adriamycin- , Bleomycin, Vinblastine and Dacarbazine). They are all poisons of sorts that stop the growth and destroy cancer cells. On the way the also destroy healthy cells hence the terrible and unpleasant side effects. The story of these lethal drugs makes an interesting read and shows how allopathy actually works. In the Emperor of all Maladies, Siddharta Mukerjee traces the life of this age old disease in a fascinating way. I am more than half way through and have witnessed the birth of the 4 drugs that will soon become an intrinsic part of my life.
I always feel that one of the best ways to conquer an enemy is by getting to know it as best you can. And that is what I am doing no. Knowing the enemy is also getting the better of your fears and learning how to deal with them. In this journey we will have to make friends at least temporarily.
I was reading a book called 50 things to do when you have cancer and one of the earliest is to take the lead in the therapy and ask all the questions you need to know about the proposed treatment and never accept to be bullied by the doctor. I had selected such an doctor but because of Insurance Oblige have to settle for an overcrowded hospital where doctors give you scant time. I am armed with my list of questions and also prepared to read every line of the consent form and score out the one I do not like. before the biopsy we were made to sign a form and I crossed out the line that ask for permission to use filming and pictures for commercial purpose. Believe it or not there was such a line or so I do intend to look at every line carefully before consenting to anything! I also intend asking every question that disturbs me from what would happen if we did nothing at all, to what the line of therapy be, its schedule, the short term effects, the long term effects, the signs to watch out for in between chemos and I expect ANSWERS. I do not want to be pushed around. I want a telephone number that will always be answered should I have a question or some unexpected reaction.
So today goes like reading my book to end if possible before 3.30pm. I think I should be able to as I read fast and even in a moving auto rickshaw!
I always feel that one of the best ways to conquer an enemy is by getting to know it as best you can. And that is what I am doing no. Knowing the enemy is also getting the better of your fears and learning how to deal with them. In this journey we will have to make friends at least temporarily.
I was reading a book called 50 things to do when you have cancer and one of the earliest is to take the lead in the therapy and ask all the questions you need to know about the proposed treatment and never accept to be bullied by the doctor. I had selected such an doctor but because of Insurance Oblige have to settle for an overcrowded hospital where doctors give you scant time. I am armed with my list of questions and also prepared to read every line of the consent form and score out the one I do not like. before the biopsy we were made to sign a form and I crossed out the line that ask for permission to use filming and pictures for commercial purpose. Believe it or not there was such a line or so I do intend to look at every line carefully before consenting to anything! I also intend asking every question that disturbs me from what would happen if we did nothing at all, to what the line of therapy be, its schedule, the short term effects, the long term effects, the signs to watch out for in between chemos and I expect ANSWERS. I do not want to be pushed around. I want a telephone number that will always be answered should I have a question or some unexpected reaction.
So today goes like reading my book to end if possible before 3.30pm. I think I should be able to as I read fast and even in a moving auto rickshaw!
shades of grey
R has been sleeping a lot. His face looks like a little child's. Trusting, at peace. He can sleep for hours at an end and right through the night. Not a line of worry on his face. Strange for a someone who has just been diagnosed with Hodgkin's disease. Or maybe it just his way of coping with the news. Staying awake is scary even terrifying. For the past days he has had his share of advice, counsel, shared experiences all given in good spirit and faith but I guess all the images muddle in his brain and become incoherent and confused. So Morpheus's arms is a safe and secure option. His time out till he can process things better.
I asked my good doc why he has happening. His answer was that for the past year or so we had been drifting through shades shades of grey (not the mommy porn kind:) ). What he meant was that as the diagnosis had not been confirmed anything was possible: the good, the bad and the ugly. And like all humans we hoped, prayed and petitioned one and all. In the back of our minds was the dreaded word C, but every investigations done pushed it away But now we have a diagnostic and whether we like it or not, the road map lies ahead and a new C word has taken over all our fears: Chemo. No more shades of grey to comfort you just black and white and either very scary.
Each one of us is dealing with it in her or his way, and R has taken the withdrawal way: sleep your fears away, and when you are awake the switch on the idiot box so that its drone becomes your new lullaby. For the rest meekly follow the leader. Get up and dressed,walk down the stairs, get in the car and allow your self to be driven to whatever horror awaits you, scared to death but hiding it by remaining in your 'etat second', - the trance you have have chosen to keep the nightmares away. So sleep sweet child. I will not awake you.
For me the story is different. Morpheus has decided to desert me. I lie awake in the night thoughts crowding my mind. I spend the day reading as much as I can on this new C companion that has taken over my life. Adrenaline pumps at an accelerated rate. The over 400 pages of the Emperor of all Maladies have to be finished. Diet charts worked out. The and anger and tears now take the shape of febrile and almost delirious words that fill an empty screen. Some to be shared no, others to await their moment.
There is no long term any more. The good doc told me not to expect any changes before 3 months. 90 days. 2160 hours. Days that will coalesce into one big day of seeing my loved one destroyed as C destroys before it condescends to make you better. There is no other way. The side effects are terrible. I cannot imagine how C will first ravage and already devastated body. I know I will have to conjure all the tricks in my repertoire to keep a brave face and find the words to soothe, the games to fill time that will get truly Bergsonian, and appear almost still. In between I will have to find ways of shedding frozen tears, releasing suffocating anger and above all the strength not to say ENOUGH!
It is all black and white now. No more shades of grey!
I asked my good doc why he has happening. His answer was that for the past year or so we had been drifting through shades shades of grey (not the mommy porn kind:) ). What he meant was that as the diagnosis had not been confirmed anything was possible: the good, the bad and the ugly. And like all humans we hoped, prayed and petitioned one and all. In the back of our minds was the dreaded word C, but every investigations done pushed it away But now we have a diagnostic and whether we like it or not, the road map lies ahead and a new C word has taken over all our fears: Chemo. No more shades of grey to comfort you just black and white and either very scary.
Each one of us is dealing with it in her or his way, and R has taken the withdrawal way: sleep your fears away, and when you are awake the switch on the idiot box so that its drone becomes your new lullaby. For the rest meekly follow the leader. Get up and dressed,walk down the stairs, get in the car and allow your self to be driven to whatever horror awaits you, scared to death but hiding it by remaining in your 'etat second', - the trance you have have chosen to keep the nightmares away. So sleep sweet child. I will not awake you.
For me the story is different. Morpheus has decided to desert me. I lie awake in the night thoughts crowding my mind. I spend the day reading as much as I can on this new C companion that has taken over my life. Adrenaline pumps at an accelerated rate. The over 400 pages of the Emperor of all Maladies have to be finished. Diet charts worked out. The and anger and tears now take the shape of febrile and almost delirious words that fill an empty screen. Some to be shared no, others to await their moment.
There is no long term any more. The good doc told me not to expect any changes before 3 months. 90 days. 2160 hours. Days that will coalesce into one big day of seeing my loved one destroyed as C destroys before it condescends to make you better. There is no other way. The side effects are terrible. I cannot imagine how C will first ravage and already devastated body. I know I will have to conjure all the tricks in my repertoire to keep a brave face and find the words to soothe, the games to fill time that will get truly Bergsonian, and appear almost still. In between I will have to find ways of shedding frozen tears, releasing suffocating anger and above all the strength not to say ENOUGH!
It is all black and white now. No more shades of grey!
Monday 22 July 2013
bone biopsy over
Yippee. The bone marrow biopsy is over. I do not know how it went as he went alone with the doctor for the biopsy like a brave man. It took a 15 minutes and R said it was not painful. Dr Bansal was very gentle and kind. He has promised to be with me throughout the journey though we cannot have him as our doctor for the chemo Insurance oblige!
This is a big step and I hope the rest goes as easily!
I prayed for miracles that could not happen. Now I pray for small things and they are happening. Maybe this is the right approach.
This is a big step and I hope the rest goes as easily!
I prayed for miracles that could not happen. Now I pray for small things and they are happening. Maybe this is the right approach.
Sunday 21 July 2013
revisiting the word protocol
As a diplomat's daughter the word protocol entered my lexicon at a very early age. My parents often used the word whatever language they were speaking in. As I grew from a toddler to a child I realised that the word could be associated to many things: a person (Chief of Protocol) - the man who use to come to our house to escort my father to the head of state of the country we were posted in to present his Credentials -, to a situation - when mama used to flitter around the dressed dining table with a list in place cards in hand as everyone was to be seated according to protocol and so on. Everything had to be done following protocol and every thing was spelt out in a hard cover book called: Manuel Pratique du Protocole. I remember once way back in the mid sixties during a rather choppy journey between Marseilles and Algiers where we were posted, having the fat book fall on my hand as the boat rocked and rolled. When my parents asked me what happened they went into hysterics. I do not know why it sounded funny as the book had hurt my head, but since that day the mention of the name of the book sent us all on a laughing spree.
Mt first job too was linked to this word as I was the Social Secretary of the Ambassador of Belgium for more than 2 years. This I was in charge of protocol and it was a pain in the you know where! I had hoped that it would be last time but not quite as I chose conference organisation as a career and protocol was a huge part of it and how can I forget that I was chief of protocol for the Asian Games 1982. One should write about these experiences as some of them are rib tickling!
When I decided to make a huge career change and chose the slums as my beat, I truly thought I would never hear the word again. But my friend the Fates had other plans. I was to discover a whole new meaning of the word, one that I wished I never had.
The meaning I am referring to is: course of medical treatment, most often use for cancer. Actually I am in the midst of reading about its origin in The Emperor of all Maladies. I am in the middle of the book reading about how chemotherapy came to exist and how protocols were first established. It is scary as the drugs used are nothing short of poison. I guess it is far better than the initial ablations and surgeries done without anaesthetic! I still have to read about the progress made in administering poisons but I am not sure I will learn to accept let alone welcome it.
It is easy to decide for yourself. You can either go the mama way and turn into a stubborn child pretending to have lost her memory, or maybe she actually did as a way of dealing with a situation, or like my pa who accepted everything suggested as he knew he had to go so that I could fly. He needed an excuse and found one.
We have made a decision and I will stick by it as R has to get the best available. I will sit by him as he is first slowly poisoned. I can understand now why one of the side effects of chemo is nausea. It is the intelligent response of an intelligent and wise body to any form of poisoning. I can understand why the hair falls as all growing cells including the healthy ones will have to die. The blisters and ulcers are because the healthy cells of the digestive tract will also. I will watch all this with a smile on my face as I see him lose weight and become weaker and try and remember that all will be well one day, some day...
I hate this new protocol business. I find chemo too brutal. If cells go haywire there must be a reason. Why don't find the reason and reverse it.
Mt first job too was linked to this word as I was the Social Secretary of the Ambassador of Belgium for more than 2 years. This I was in charge of protocol and it was a pain in the you know where! I had hoped that it would be last time but not quite as I chose conference organisation as a career and protocol was a huge part of it and how can I forget that I was chief of protocol for the Asian Games 1982. One should write about these experiences as some of them are rib tickling!
When I decided to make a huge career change and chose the slums as my beat, I truly thought I would never hear the word again. But my friend the Fates had other plans. I was to discover a whole new meaning of the word, one that I wished I never had.
The meaning I am referring to is: course of medical treatment, most often use for cancer. Actually I am in the midst of reading about its origin in The Emperor of all Maladies. I am in the middle of the book reading about how chemotherapy came to exist and how protocols were first established. It is scary as the drugs used are nothing short of poison. I guess it is far better than the initial ablations and surgeries done without anaesthetic! I still have to read about the progress made in administering poisons but I am not sure I will learn to accept let alone welcome it.
It is easy to decide for yourself. You can either go the mama way and turn into a stubborn child pretending to have lost her memory, or maybe she actually did as a way of dealing with a situation, or like my pa who accepted everything suggested as he knew he had to go so that I could fly. He needed an excuse and found one.
We have made a decision and I will stick by it as R has to get the best available. I will sit by him as he is first slowly poisoned. I can understand now why one of the side effects of chemo is nausea. It is the intelligent response of an intelligent and wise body to any form of poisoning. I can understand why the hair falls as all growing cells including the healthy ones will have to die. The blisters and ulcers are because the healthy cells of the digestive tract will also. I will watch all this with a smile on my face as I see him lose weight and become weaker and try and remember that all will be well one day, some day...
I hate this new protocol business. I find chemo too brutal. If cells go haywire there must be a reason. Why don't find the reason and reverse it.
rain sweat and tears
I was waiting for the rains
The dark clouds to gather
The skies to open
I waited and waited
Holding on to the tears I needed to shed
I wanted to take a long walk
Stomping in the rain
My face turned up to the sky
So that the tears would mingle with the raindrops
And no one would know I cried
But the clouds blew away
And the tears remained unshed
Choking my very soul
Crushing my spirit
Whilst the smile, the brave one, remained
Stuck to my face
Let us not forget
It is showtime
But how long would the tears
Remain unshed
I knew they would swell
Into a torrent
And come gushing out
Ruining the carefully scripted play
And revealing to one and all
The agony I am so painfully trying to hide
I could not wait for the rain Gods
I needed to find another outlet
To mask the tears I so needed to shed
Blissfully I found the way
The daily walk on the treadmill
And the humidity soaked air
Would provide the domino
I so desperately sought
All it would need was a little extra push
Of the ageing body that
Would bring the sweat that would hide the tears
So every morning
For the time it takes to complete four kilometers
The tears spill unabashed and freely
Mingle with the sweat that conceals them so well
Providing the relief needed to carry on
Putting up a stellar show for the world to see
There are tears of regret for things of the past
Tears for the fears of things not yet come
Tears for the prayers not answered
Tears for the dreaded reality that brings you full circle
And makes you stand at a place you stood before
Holding the morrows of loved ones in your shaking hands
Knowing your words will seal the fate of all to come
And as the tears spill out ceaselessly
You find yourself in a spinning time machine
That takes you on a ride you never wished
And all the times gone by
All wounds you had thought cured
All hurts you had hoped healed
All you failures and blunders
Come back to haunt you seeking answers
You know you do not have.
The flood gates are opened
There is no going back
The dark clouds to gather
The skies to open
I waited and waited
Holding on to the tears I needed to shed
I wanted to take a long walk
Stomping in the rain
My face turned up to the sky
So that the tears would mingle with the raindrops
And no one would know I cried
But the clouds blew away
And the tears remained unshed
Choking my very soul
Crushing my spirit
Whilst the smile, the brave one, remained
Stuck to my face
Let us not forget
It is showtime
But how long would the tears
Remain unshed
I knew they would swell
Into a torrent
And come gushing out
Ruining the carefully scripted play
And revealing to one and all
The agony I am so painfully trying to hide
I could not wait for the rain Gods
I needed to find another outlet
To mask the tears I so needed to shed
Blissfully I found the way
The daily walk on the treadmill
And the humidity soaked air
Would provide the domino
I so desperately sought
All it would need was a little extra push
Of the ageing body that
Would bring the sweat that would hide the tears
So every morning
For the time it takes to complete four kilometers
The tears spill unabashed and freely
Mingle with the sweat that conceals them so well
Providing the relief needed to carry on
Putting up a stellar show for the world to see
There are tears of regret for things of the past
Tears for the fears of things not yet come
Tears for the prayers not answered
Tears for the dreaded reality that brings you full circle
And makes you stand at a place you stood before
Holding the morrows of loved ones in your shaking hands
Knowing your words will seal the fate of all to come
And as the tears spill out ceaselessly
You find yourself in a spinning time machine
That takes you on a ride you never wished
And all the times gone by
All wounds you had thought cured
All hurts you had hoped healed
All you failures and blunders
Come back to haunt you seeking answers
You know you do not have.
The flood gates are opened
There is no going back
let us get the show on the road
Let us get the show on the road only there is a hitch: I need to write the script, chose the music and the props as we go on. My packing list is ludicrous and somewhat surreal and my travel bag will have to be filled as we go along. In my make up kit is a ton of super glue to keep the brave face and smile intact. My repertoire of funny lines is rather thin so have to get some help from people who will be hired along the way. I still do not when lines and I guess neither does my partner in this pas de deux we have to perform. The uniqueness of this show lies in the fact that we have to produce and enact it even if we do not want to. It may be a comedy or a tragi comedy or even turn into a sombre now. We just hope that the last scene will be an Ode to Joy.
A quiet day
It was a quiet day before the journey really begins. R's school friend P and best pal came by and it was really nice to see them joke and laugh. Crazy plans were made like holidays in faraway lands. I cannot yet imagine uprooting the banyan tree I have become but who knows the fantastic and uncharted voyage that we embark on in a few hours may have some strange mutations in my cells and make me want to travel again. Guess the cancer buddy also gets zapped by weird after effects.
My grandson ensured that P meet Zozo the punching bag and give it some good punches. But there is an elephant in the room, though only for the next 22 hours. R is really terrified by the pain he will have to endure tomorrow when he gets his bone marrow biopsy. I can understand him as I am a big coward in the wake of physical pain. I have been trying to tell him not to worry and have even decided to hold his hands through the procedure but am not looking forward to it. Tomorrow will be a long day. I intend taking a little time off and wander around a book shop.
Talking of books, I picked the Emperor of all Maladies and am reading it. I had not done so when it came out as I had thought I would never have to encounter this Emperor again in my life, save for me but I have my roadmap and will stick to it no matter what. Anyway the biography of cancer, I have read 150 pages, is quite interesting and demystifies some of the beliefs we hold. Will try and finish it by tomorrow.
R i now busy playing scrabble with the daughters of his other best friend - these are the only true real friends he has, the rest I can do without -. I can hear the laughter coming from the room where the match is going on. It is heartwarming. I hope there will be many more such moments.
So today has been a hiatus in the hectic times we have had for the past months. I guess the fact that we finally have a diagnosis, however brutal and unfair has changed things in many ways. No more groping in the dark and praying for the impossible. Just processing, accepting and surrendering.
My grandson ensured that P meet Zozo the punching bag and give it some good punches. But there is an elephant in the room, though only for the next 22 hours. R is really terrified by the pain he will have to endure tomorrow when he gets his bone marrow biopsy. I can understand him as I am a big coward in the wake of physical pain. I have been trying to tell him not to worry and have even decided to hold his hands through the procedure but am not looking forward to it. Tomorrow will be a long day. I intend taking a little time off and wander around a book shop.
Talking of books, I picked the Emperor of all Maladies and am reading it. I had not done so when it came out as I had thought I would never have to encounter this Emperor again in my life, save for me but I have my roadmap and will stick to it no matter what. Anyway the biography of cancer, I have read 150 pages, is quite interesting and demystifies some of the beliefs we hold. Will try and finish it by tomorrow.
R i now busy playing scrabble with the daughters of his other best friend - these are the only true real friends he has, the rest I can do without -. I can hear the laughter coming from the room where the match is going on. It is heartwarming. I hope there will be many more such moments.
So today has been a hiatus in the hectic times we have had for the past months. I guess the fact that we finally have a diagnosis, however brutal and unfair has changed things in many ways. No more groping in the dark and praying for the impossible. Just processing, accepting and surrendering.
Saturday 20 July 2013
Some comforting news
We got the results of the CECT scan of the chest that was done to determine the 'stage' of Zozo and whether it has not spread above the diaphragm.
Yippee it has not! Whatever that means.. but I know it is good news
Tomorrow bone marrow biopsy... R is scared of the pain
And I am working on my brave, smiling face...
Yippee it has not! Whatever that means.. but I know it is good news
Tomorrow bone marrow biopsy... R is scared of the pain
And I am working on my brave, smiling face...
Friday 19 July 2013
If I were a rich man
If I were a rich man sang Topol in Fiddler on the Roof.I sing the same song today replacing man by woman. If I were a rich woman, I would be able to chose the roadmap I want and treat my loved one the way I want. Maybe it would not be the best in the world, but it would be the best I could find. Anyway all this to say that 'another one bites the dust'.
It is all matter of insurances and what they give. And once again you have to follow their diktats. And that means big commercial hospitals. The new nexus on the street. I was hoping to have Ranjan's chemo done in smaller and more humane conditions but no way. Insurance says fancy soulless giant. And so though I had said never again I have to bite the dust and follow the system.
So slight modification: today CECT blissfully at a place I like as blissfully again it makes the mark with the Big Insurance! Then bone marrow biopsy on Monday, my way, am rich enough for that and then consult in the big medical business house on Thursday, big man not available till then and then chemo as he decides.
I know it makes better sense, or should say better financial sense. Will take some time to get used to. I must admit hours and hours in those corridors, coffee at the branded counter and having to pay 35 rupees for a bottle of water. you cannot take your own, though I sneak in mine is not what I look forward to. But what the hell, will do it.
It I were a rich woman ya ba dabba....
It is all matter of insurances and what they give. And once again you have to follow their diktats. And that means big commercial hospitals. The new nexus on the street. I was hoping to have Ranjan's chemo done in smaller and more humane conditions but no way. Insurance says fancy soulless giant. And so though I had said never again I have to bite the dust and follow the system.
So slight modification: today CECT blissfully at a place I like as blissfully again it makes the mark with the Big Insurance! Then bone marrow biopsy on Monday, my way, am rich enough for that and then consult in the big medical business house on Thursday, big man not available till then and then chemo as he decides.
I know it makes better sense, or should say better financial sense. Will take some time to get used to. I must admit hours and hours in those corridors, coffee at the branded counter and having to pay 35 rupees for a bottle of water. you cannot take your own, though I sneak in mine is not what I look forward to. But what the hell, will do it.
It I were a rich woman ya ba dabba....
some good news
We had R's blood counts done today and for the past time in almost a year the haemoglobin showed an upward trend. I hope this is a sign of things to come.
Remission
Remission. I hate the word. I discovered today that it is a synonym for forgiveness. Remission is only used for cancer and not for other maladies. Why should I seek forgiveness from an illness. I seek cure, healing, recovery. Who are doctors to talk in terms of months, years, the maximum being five! The time of death is not in our hands. It is has been decided by some bigger force and nothing can change that. I could slip on a banana peel in the next minute and die. Or be run over by a car. Or I could live way beyond the five years that men in white give me.
The first tears
I shed my first tears this morning. It was not the tears or anger, rage and frustration I had thought would break the dyke I have carefully built since I heard the one news I did not want to hear. These were silent, quiet tears that streamed gently as I sought forgiveness from Ranjan, forgiveness for not having found a way to escape all the pain that awaits him, forgiveness for all the humiliation and ignominy that chemotherapy brings, forgiveness for not being able to share all that he would have to go alone, though watching him will be far from pain free. His eyes welled too, but I did not want to tell him I had seen his tears though it broke my heart into million pieces. I would have liked to take him in my arms and hold me tight, but I knew that were I to do this, we would both be sobbing uncontrollably. And this we could not afford to do. Not today. Not in the days to come. I guess we both held back our tears. We made some crazy plans that were nonsensical but needed to ward the moment of weakness. We would sell the house and blow all the money, we would buy an island, go to the Caribbean. He even said to forget the treatment and see what happens. He did not know I had searched the web for this possibility and it was one we could not take. Neither of us are brave enough. It is only one like my Mom who could go down that road. We had to tread the other one.
What is gnawing at my soul just as the illness is gnawing at his body is my total sense of helplessness. I have always been called a power freak, but today all power has been taken away from me. If God was on my side, he would take my Angel in his sleep. I would not grudge him that. But that is not to be.
What is gnawing at my soul just as the illness is gnawing at his body is my total sense of helplessness. I have always been called a power freak, but today all power has been taken away from me. If God was on my side, he would take my Angel in his sleep. I would not grudge him that. But that is not to be.
Thursday 18 July 2013
To be trusted is a greater compliment than being loved.
This is the nth sleepless night I have had. I can feel R sleeping soundly next to me. For the past month and for the one to come a little Angel sleeps between us. Our grandson whose preferred place to sleep is his Nana and Nani's futon! He has been sleeping with us from the time he was 8 months old. He is now 4. Both these gentle and guileless souls have one things in a common: they trust me implicitly. To be trusted is a greater compliment than being loved wrote George McDonald.
In a few hours we embark on a terrifying and uncharted journey. The decision to travel that road is mine and mine alone. A friend said that our lives would change forever in days to come. He meant these words kindly and only wished the best. Yet I know that the journey is fraught with pain, indignity and an uncertain outcome. And true it will change our lives forever as we will live with a Damocles sword hanging on our heads till death do us part.
Some years back, must be almost two decades ago, I was given that option, in my own interest of course by a man in white in the city I love so much. I chose not to heed his advice. I did not want to live that way, come what may. I wad meant to be 'high risk'. I was willing to take the risk and my gamble paid. But how was I to know that I would have to make the decision for the one I love most again! Only this time the sword is not simply hanging, it is threatening to fall.
A friend who has gone through the same nightmare and lost her battle wrote to me telling me to scream my pain out. Maybe she is right. Repressing my pain, not expressing it, hiding it behind masks that threaten to crack every minute and need quick fixes is not the approach that will see me through the coming times.
I have been at these crosswinds earlier but there was always someone else to take the decision. In my mother's case she took it herself exonerating papa and I from the burden of it. Her tactic was to become a little stubborn little girl. Many believe she had lost her mind. Today I know it was a game she invented and played by the rules she set. Then in papa's case things went so fast that decisions were taken without due diligence. Or so it seemed. Today I know that it was willed my him as he had become a 'hindrance' to the life of his only child all set to fly away to the country he loved most. He flew away and joined his loved one, leaving me to live with mine unhindered by guilt.
Today the script is different. No stubborn child, no man who willed his destiny. Today the decision is for the most gentle and wonderful man who has put his entire trust in me. I will be responsible from each and everything that he will have to face: the pain, the indignity, the demeaning side effects and I will feel each and every one of them and know at every moment that I and I alone am culpable and to be blamed. And what makes it all worse is that it is a one way street with no option of turning back.
I have tried from the time the news befell us to put up a brave face and demystify the adversary, giving it pitiful name, finding out his dislikes, laughing at him and wowing to take him on. And I will. But I have demons to face, demons who haunt me every night and sneer at my foolishness. At dawn they disappear to come back again night after night.
Do I have choices. Logically no! There are too many people, some well meant and some simply irking, with success stories that give false hope and straws to clutch at in our despair. And the options are not mine to give as they are untested or too chilling. It was for me, I know the road I would take but it is one I do not have the right to suggest.
I pray for a miracle, an impossible miracle, one that God alone in his mercy can bestow.
In a few hours we embark on a terrifying and uncharted journey. The decision to travel that road is mine and mine alone. A friend said that our lives would change forever in days to come. He meant these words kindly and only wished the best. Yet I know that the journey is fraught with pain, indignity and an uncertain outcome. And true it will change our lives forever as we will live with a Damocles sword hanging on our heads till death do us part.
Some years back, must be almost two decades ago, I was given that option, in my own interest of course by a man in white in the city I love so much. I chose not to heed his advice. I did not want to live that way, come what may. I wad meant to be 'high risk'. I was willing to take the risk and my gamble paid. But how was I to know that I would have to make the decision for the one I love most again! Only this time the sword is not simply hanging, it is threatening to fall.
A friend who has gone through the same nightmare and lost her battle wrote to me telling me to scream my pain out. Maybe she is right. Repressing my pain, not expressing it, hiding it behind masks that threaten to crack every minute and need quick fixes is not the approach that will see me through the coming times.
I have been at these crosswinds earlier but there was always someone else to take the decision. In my mother's case she took it herself exonerating papa and I from the burden of it. Her tactic was to become a little stubborn little girl. Many believe she had lost her mind. Today I know it was a game she invented and played by the rules she set. Then in papa's case things went so fast that decisions were taken without due diligence. Or so it seemed. Today I know that it was willed my him as he had become a 'hindrance' to the life of his only child all set to fly away to the country he loved most. He flew away and joined his loved one, leaving me to live with mine unhindered by guilt.
Today the script is different. No stubborn child, no man who willed his destiny. Today the decision is for the most gentle and wonderful man who has put his entire trust in me. I will be responsible from each and everything that he will have to face: the pain, the indignity, the demeaning side effects and I will feel each and every one of them and know at every moment that I and I alone am culpable and to be blamed. And what makes it all worse is that it is a one way street with no option of turning back.
I have tried from the time the news befell us to put up a brave face and demystify the adversary, giving it pitiful name, finding out his dislikes, laughing at him and wowing to take him on. And I will. But I have demons to face, demons who haunt me every night and sneer at my foolishness. At dawn they disappear to come back again night after night.
Do I have choices. Logically no! There are too many people, some well meant and some simply irking, with success stories that give false hope and straws to clutch at in our despair. And the options are not mine to give as they are untested or too chilling. It was for me, I know the road I would take but it is one I do not have the right to suggest.
I pray for a miracle, an impossible miracle, one that God alone in his mercy can bestow.
In hindsight... a lull is not always welcome
The past weeks have been hectic. One did not have time to think, to hurt, to feel angry, to rant and rave, to question, to cry. A tidal wave swept upon us when results of a scanner came, and then it was a slew of other investigations, visits to doctors, waiting in queues, battling with uncaring hospital administrations, waiting for results, understanding the results, comprehending the options and realising one had none, or at best few. Then the devastating responsibility of taking a decision you know is right but you have avoided all along, desperately looking for some alternatives your heart wants to find but your exhausted mind knows do not exist. Pouring over the net hope in your heart while you peep at the options you so want to avoid because you are aware of the consequences. As someone said: your lives will change the day you cross the line. The line here is the first step to what is know as cancer management. You are told the 'protocol': a boner marrow biopsy and then chemotherapy. You know that once you are in the loop there is no coming back.
The decision has been taken, barring a miracle I know will not happen. Even the Gods cannot conjure it. It all begins in 96 hours. Till then there is a lull a cessation of all activities and the quiet is scary as you are compelled to look at the road that brought you to this fateful day. Did you make any mistakes, play any delaying tactics borne out of your own fears, procrastinated for far too long. In hindsight if I were to be honest and candid, there were signs that one could have seen. But one was so desperately trying to find anything but the C word, one got lost along the way, and the three Fates - Clotho, Lachesis and Atropos - were not one my side as they spindled a series of results that did not show the cells gone berserk. And so in spite of the reality staring at us as the blood counts refused to climb and the weight went into a downward spiral, we kept clutching at straws. And so it went. Prayers and rituals, visits to the temples with pledges taken, everything one could imagine.
Today as I sit next to the man I have loved for more than two thirds of my life, I wonder if I somewhere let him down because of my own fears. But I cannot change what has gone. I can only make sure that the ordeal that awaits him is alleviated by choosing the most humane conditions for hid treatment, tempered with as much love as I can give, and palliated by every thing I can find. I hope I will have the strength to do it.
The decision has been taken, barring a miracle I know will not happen. Even the Gods cannot conjure it. It all begins in 96 hours. Till then there is a lull a cessation of all activities and the quiet is scary as you are compelled to look at the road that brought you to this fateful day. Did you make any mistakes, play any delaying tactics borne out of your own fears, procrastinated for far too long. In hindsight if I were to be honest and candid, there were signs that one could have seen. But one was so desperately trying to find anything but the C word, one got lost along the way, and the three Fates - Clotho, Lachesis and Atropos - were not one my side as they spindled a series of results that did not show the cells gone berserk. And so in spite of the reality staring at us as the blood counts refused to climb and the weight went into a downward spiral, we kept clutching at straws. And so it went. Prayers and rituals, visits to the temples with pledges taken, everything one could imagine.
Today as I sit next to the man I have loved for more than two thirds of my life, I wonder if I somewhere let him down because of my own fears. But I cannot change what has gone. I can only make sure that the ordeal that awaits him is alleviated by choosing the most humane conditions for hid treatment, tempered with as much love as I can give, and palliated by every thing I can find. I hope I will have the strength to do it.
A sampling of what awaits
This morning went to the next door nursing home to get R's biopsy stitches removed. They were actually staples. The nurse was smiling and as gentle as could be but removing staples does hurt a little. I have lots of stitched removed but do not recall staples. I was surprised to see R wince and then even let out a cry while the stitches were being removed. I held on to his hand to see him through the ordeal. As I have written before in our almost 40 years together I have practically never seen R sick. The odd cold or stomach upset did occur. I must confess he has never been a very good patient!
His absolute loathing for needles even made him miss the mandatory vaccinations. Poor chap. The last year made up for a life time with the amount of pokes he had with blood tests and other investigations. he bore them bravely, I guess because he more than anyone else wanted to know what was wromg with him and why he was wasting away.
I shudder Monday as he will have to undergo a bone marrow needle biopsy and though the doctor assured him it does not hurt 'much' I am sure it will be agony for R. And then the chemotherapy. I will try and make it as easy as I can.
His absolute loathing for needles even made him miss the mandatory vaccinations. Poor chap. The last year made up for a life time with the amount of pokes he had with blood tests and other investigations. he bore them bravely, I guess because he more than anyone else wanted to know what was wromg with him and why he was wasting away.
I shudder Monday as he will have to undergo a bone marrow needle biopsy and though the doctor assured him it does not hurt 'much' I am sure it will be agony for R. And then the chemotherapy. I will try and make it as easy as I can.
Wednesday 17 July 2013
After the show
Went to see the two docs.. one recommended by my lovely family doc P, humane, and willing to listen and the other the one who till now was all smiles, the one who performed the biopsy but then today looked through me as if I did not exist... his lackey told me I was no more 'his' patient as he was surgery and would have to meet medical oncology.. pass the parcel... seduce it again and then let it fall in the trap. I am not parcel that has to be passed. I had gone there to find out the way forward and expected the doc who had treated us till then to at least explain what awaited us. Had I chosen to be a 'parcel' I would have gone to a State run hospital. This one was one of the best in town. It was definitely my final OK Ta ta to them! Exit this show!
But the nice doc had already gently told me what we needed to do and helped me understand each step, taking time to explain and giving me the time to process. There were no interruptions and the false sense of hurry that I had encountered earlier.
So here goes. We must do a bone marrow biopsy. Ouch. He did tell me it hurts a little. And then we start the chemo. It will not be the CHOP I thought and quite licked the acronym as it could have been the line of a new song: CHOP ZOZO but ABVD. 1 cycle every 15 days for 2 months. A quick search on the net showed it had the same side effects. We have no choice.
Earlier in the day I had gone to a Ayurveda Doctor with old friends or rather should I say the closest I have to MY family (my mama and papa) to get a magic powder Ashwagandha that would help boost the immune system and help with the side effects. It is quite a precious powder and my friend had to trudge to the boonies to get it for us. I was moved to tears but remember these are frozen! How wonderful people can be. I remember how this very person's wife held my father's hand whilst ma was dying of cancer. I know she is there for me and that makes things easier.
We have but a handful of days to feed R so that he can withstand the first administration then I will have to find out how to sustain him during the bad days.
I have work to do. Thank God for that.
But the nice doc had already gently told me what we needed to do and helped me understand each step, taking time to explain and giving me the time to process. There were no interruptions and the false sense of hurry that I had encountered earlier.
So here goes. We must do a bone marrow biopsy. Ouch. He did tell me it hurts a little. And then we start the chemo. It will not be the CHOP I thought and quite licked the acronym as it could have been the line of a new song: CHOP ZOZO but ABVD. 1 cycle every 15 days for 2 months. A quick search on the net showed it had the same side effects. We have no choice.
Earlier in the day I had gone to a Ayurveda Doctor with old friends or rather should I say the closest I have to MY family (my mama and papa) to get a magic powder Ashwagandha that would help boost the immune system and help with the side effects. It is quite a precious powder and my friend had to trudge to the boonies to get it for us. I was moved to tears but remember these are frozen! How wonderful people can be. I remember how this very person's wife held my father's hand whilst ma was dying of cancer. I know she is there for me and that makes things easier.
We have but a handful of days to feed R so that he can withstand the first administration then I will have to find out how to sustain him during the bad days.
I have work to do. Thank God for that.
A little background and the beginning of a roadmap
It is official. After almost a year of investigations and running in circles, R has been diagnosed with Classical Hodgkin's t-cell histiocyte-rich large b-cell lymphoma. In a few hours I will be meeting two oncologists and get to understand what it means in a vocabulary I am familiar with. I want to know the stage, the kind (galloping or not), the prognosis, the treatment list, the side effects, the best case and worst case scenario. I am mentally prepared for it. I have done some advance study of support therapies and put R on a special diet that will help boost him up. Some is quite nasty tasting but he is extremely cooperative.
After getting all the answers I seek and processing it all, I intend to take some time and decide what course of action we will take. I would like the treatment to be humane and respectful of R's dignity.
It is a sort of crossroads for me as I know that once the decision is taken my life will change forever. The person that will write the next post will never be the one who is writing today. It is a coming of age of sorts. Quite frankly I thought I was done with those.
From what I have heard, chemotherapy, as I guess that what awaits us, is ugly and nasty. R and I have talked about it and one of the topics that came up was hair loss. He has very short hair, and so do I, but I guess the thought of being bald is not an easy one. I remember when he had a lovely mane of curly hair he would laugh at his friends with bald pates and call them moonshine. I guess it is sunshine days. I have decided to shave my head the day his hair starts falling. I guess we will be the Baldies!
The only way to beat this beast, that I call Zozo, is to learn to laugh in whatever way possible so that Zozo does not commandeer all the space in our lives. So there are many things on my to do list. I intend to get a punching bag and boxing gloves and have convinced R to give me a few boxing lessons. The punching back will have Zozo written all over it. I will also get a dart board and vent my anger and rage on these. I already walk 4 km at 6 km an hour and with every step I take I kill Zozo.
If negative thoughts beget illnesses as Norman Cousins says, then positive ones should ward them off. So we will laugh at our bald heads and at every blow Zozo tries to give. We will laugh all the way.
We want people to come, though we are quite happy the both of us. But we do not need commiserations, advice and any such nonsense.
Would love to have you on board. Will you come!
After getting all the answers I seek and processing it all, I intend to take some time and decide what course of action we will take. I would like the treatment to be humane and respectful of R's dignity.
It is a sort of crossroads for me as I know that once the decision is taken my life will change forever. The person that will write the next post will never be the one who is writing today. It is a coming of age of sorts. Quite frankly I thought I was done with those.
From what I have heard, chemotherapy, as I guess that what awaits us, is ugly and nasty. R and I have talked about it and one of the topics that came up was hair loss. He has very short hair, and so do I, but I guess the thought of being bald is not an easy one. I remember when he had a lovely mane of curly hair he would laugh at his friends with bald pates and call them moonshine. I guess it is sunshine days. I have decided to shave my head the day his hair starts falling. I guess we will be the Baldies!
The only way to beat this beast, that I call Zozo, is to learn to laugh in whatever way possible so that Zozo does not commandeer all the space in our lives. So there are many things on my to do list. I intend to get a punching bag and boxing gloves and have convinced R to give me a few boxing lessons. The punching back will have Zozo written all over it. I will also get a dart board and vent my anger and rage on these. I already walk 4 km at 6 km an hour and with every step I take I kill Zozo.
If negative thoughts beget illnesses as Norman Cousins says, then positive ones should ward them off. So we will laugh at our bald heads and at every blow Zozo tries to give. We will laugh all the way.
We want people to come, though we are quite happy the both of us. But we do not need commiserations, advice and any such nonsense.
Would love to have you on board. Will you come!
Tuesday 16 July 2013
Almost 40 years and still fab
February 1014 will mark 40 years of Ranjan and I being together. It has been a long journey and a wonderful one. True we have aged a little, but I think we still look fab!
Hi everyone
I think the coming months will be difficult and writing will be my main catharsis. Till date I have written about my loved one's ailment on the pwhy blog but I think I need another space to share the day-to-day fight that has begun, not only so that those who love me are aware of the progress, but also because I need somewhere to rant and rave and an outlet for the tears I have frozen.
Welcome to my last battle.
Welcome to my last battle.
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