Noodles with Naresh

The BMT unit was a 5-star facility sterilized ice box.    I was wheeled out of the BMT Seclusion unit on Thursday  to a normal room (with Amita firmly on the side)  as the counts had leapt up and are normal.  This of course means i had the wherewithal to stand infections and did not need the extreme facilities of a Zero Infection unit.   The complete blood count, RBC, Platelets are all at acceptable levels.  One more step that the cosmos decided we needed to go through and gave us the resources to deal with it.  Ami and I have not smelt fresh air for a while and look forward.

I went on TPN (total parental nutrition) for 2/3 days. It was relieving and a little disturbing.  It was nice to by pass and rest the throat, reduce acid reflux, but it is hard to revive a confused digestive system that was not needed for 3 /4 days.  I have started taking in small amounts of food and all is well.  There is some Mucositis but should clear away in a few days.  Lots of discomfort as my body gets used to the new world of medicines and post-transplant.    Dry mouth and eyes, sensitive skin, lethargy, bone pain will take its course.   We should be discharged on Wednesday.  Home will be great.

Amita and I were discussing about the absolute lack of control we have experienced in the last 3 months.   It took a moment to cut everything from underneath us – work I loved,  kids, home, friends, family … life.  There are moments now when I let myself be a soft feather in the gentle breeze of the cosmic power;   Revelling in the magnificence and brilliance of the soft power that shapes everything.

The whole process will be evaluated by Dr Damodar end of 1^st week of September with a specific test that determines the make up of all that has happened in the blood stream and bone marrows.

There is so much to be grateful for.  My mom in law at 73 taking the impossible task of running a house.  That is what allows Ami to be with me 24*7. Dealing with all the maid issues, food, planning.  Her prayers twice a day and a firm belief that she has two hands on her favourite God and will not let go till she is listened to.  Faith works; it is a form of extreme love. Maybe selfish love.   But it is so empowering.   Father in law is there all the time; strong, holding the fort, bringing food, offering encouragement.  Dad is running temple to temple praying for me.  Suresh, chitra and Tej have so much optimism in this process.   Shreyu  is there with all his glorious simplicity. Finally, do give a big three cheers for Nisha and Ashwin.  The two of them are rock stars; doing what it takes in extreme circumstances.

Balaji sent me a simple message that is so meaningful for me.

1.       You “HAD”  leukaemia – you do not have it now –  it has already gone, do not hold it in your mind and thoughts

2.       You are not responsible for anything that happened to you – so do not be “tough” on yourself or at the same time “pity” yourself

3.       You will see a new  sense of “awakening and peace” within you over the next few months and years – I can almost hear you saying 3 years from now – Leukaemia is the best thing that happened to me ( I don’t mean to hurt you in any sense)

4.       You are “His child” – you are  being taken care of and so will you be in future.

With enemies sending messages like these, I am really at peace…waiting to see what unfolds…And trusting the process..I can see how it has unfolded so far.  A complex uncontrolled irrational circumstances of events that has put the spotlight on every assumption you had in life; but it came gift wrapped with a spouse, family and friends to die for.

Cheers .. keep your prayers going for us.

The last week was like a special sentencing I received from the Mayor of Hell into his special cell(no pun intended!).

A few days were very rough.  I remember young Ashwin and Nisha having something called thrush. Something white appears on the palette of the tongue and would vanish post a few weak antibiotics.  Well! the Mayors version of this is Mucositis.  The saliva turns viscous and the special effect is the worst throat pain you can imagine.  Every interaction with the throat is a nightmare.  Which meant every cough, acid refluxes and swallow was painful.  Painkillers were not doing its job completely and eating became impossible; drinking barely doable.

Then suddenly I got the escape formula from this.  It was waiting for me!  I needed to concentrate/meditate all day and separate the body pain from the mental commentary that accomplishes every pain.  I went through this in great fashion.  I watched all mental commentary, and saw it vanish with the awareness.  The cough which usually is accompanied by “Damn this is tough”, “Oh I know the acid reflux is coming”, “it is worse than yesterday”; became just the cough and its associated pain.  And I coughed less. And it pained so much less. Please pray that this strength continues as it is so easy for the mind to get involved with pain.

Dr Sharat Damodar is magic.  He stays in touch with the nurses 5 times a day.  What is great is the co-operation between various departments.  He has been here a long time and commands the respect of all here.  And has a quiet reassuring approach that treats me as a human.  I am reminded of Dr Renoy and Dr Ramya and how wonderful they were to me at St Johns.  Amita continues to terrorize the nurses catching them for every lapse.  Balaji and SRK are wonderful; sending me the right insight when I need it.  Nish and Ash are just rock stars.  Continue to do what they have to do with both of us not around for months.

My  heartfelt  thanks to all who are praying for us.   Please continue to do so.   We need every bit of it as turn into next week.  My counts are low; which is what this procedure was meant to do. The doctor expects suresh’s cells to kick up the counts next week.  And when the counts go up is when we know the engraftment has happened.  And I get strong again – kind of the same stuff that happened in the first phase.  The doctors are confident.  As with any transplant, there is an important 3 month period that should be bereft of complications.

Lots of Love .. All your wishes are keeping us going

Being sequestered for 10 days with a lovely view serves up a duality.  It brings sunshine, brightness and a sense of being with the world.  On the other hand it makes me wonder about normalcy and being integrated with the world!  Talk about

I am well after the stem cell transplant.  The complex process was completed yesterday.  “The Esh Brothers” came through.  Suresh and his wife (chitra) came here for a week and made it happen.  It was not a breeze for them.    I went through chemos and two days of something that knocked me out.  I welcomed the chemos and the stem cells; I tried to give the stem cells a home in my bone marrows.  I am still exhausted; but the docs tell me that I am one of the best performing patients they have had.  They are surprised that I am still taking care of myself.  Of course, Amita’s presence is the fuel that keeps me going.  Food (once in 2 hours), timely massage, a trip to the bathroom, a smile, words of encouragement, lots of hugs and kisses etc… 

Occasionally, feeling sorry for myself, I, thankfully, more than occasionally, wonder at the infinite grace that I have.  Swami Muktananda called.  Anandashram and its wonderful devotees have always been so incredibly special to me.   Thamar travelled 1000Ks to a temple (shirdi), Ashok continues to the rock around which our progress hinges, The food angels are back with new additions – chitra and satya, Lakshmi Jayanthi continues to send delicious lunch for Ashwin, Prakash went to all main south Indian temples in Tamil Nadu, Magi and Shrihari walked 14 Kms around Thiruvannamalai, so many prayers from so many (our heartfelt Pranams), my former doctor Dr Renoy asked how i was doing, the family continues to drop everything they have with the intent of getting me and Amita through this period.

It will take a week for Suresh cells to do their work.  The  process is magical – It is about letting natures elements to do its work.  The natural law of stem cells is to find a home in the bone marrow, and start producing RBCs, WBCs, neutophils etc..  We have to wait for the process to finish.  The next week is important.  Our doctor is very competent with a hawk like eye for perfection and details. 

In my moments of peace, my Mantra is; What has happened is perfect, what is “is” perfect, what will happen is also perfect.

Here is something beautiful I read that I thought will share;

“There is a pattern, a polarity, a diversity, a corollary always to be observed in the working of natural law. Depth and height, sunshine and storm, ignorance and knowledge, war and peace, love and hate, error and truth, weakness and strength, each has its part to play. Evolution cannot work in any other way. In your weakness you will find strength. In your darkness you will find light. In difficulty you will find help. It is still true that the darkest hour always precedes the dawn. This is part of the paradox of all being.

Keep us in your prayers!

Week started well, with a test showing that a Virat Kohli happened during the first phase of therapy that got me to remission.  My scores surpassed Dr Sharat’s expectation for an Induction phase.  This meant that I was clear for a stem cell transplant; which is terrific news.  I bypass (no pun intended) multiple rounds of chemos and get into a stem cell transplant to make the current remission strong and long lasting.

We are absolutely delighted with the hospital (Narayana Hrudalaya) we have chosen for the stem cell procedure.  We were in the hospital wards for 3 days of tests and have come into the Bone Marrow Transplant Unit.  The BMTU is just world class.  There is great co-operation between various doctors.  Got a spacious room with a lovely view; one to one nursing care; state of the art facilities to keep it infection free etc.. The huge bonus is Amita is also here with me .. We feel quite settled.  Talking about Wives, here is good joke someone sent to Amita a few days ago!

The wife left a note on the fridge:

·”It’s not working, I can’t take it anymore! Gone to stay at my Mother’s!”

WOMEN, who can understand them?

My preparatory work for the transplant starts Thursday (2^nd).  There is 5-6 days of preparatory work and the actual transplant happens next Wednesday and Thursday (8/9^th).  All are very optimistic that most of the issues around stem cell transplants will not happen with a sibling perfect match; which is the gift given to us in these tough times.  The more I understand this perfect match, the more it stands out as an incredible beautiful tie in a dull grey suit.  To even get started with a chance for this blessing, we need to be blessed with a sibling; the sibling has to be reasonably healthy; and then the odds play out in a discrete data set (25% chance of a perfect match, 50% chance of a 50% match and a 25% chance of no match).   The chances of a perfect match outside of siblings or twins are basically non-existent.

The objective of the transplant is to ensure the least number of cancer cells in the body.  The objective is for my brothers (Suresh) cells to take over the job of the bone marrow cells that produce blood in me; and in the process kill most if not all the remaining cancer cells in my body.  I read something mind boggling; my blood type will become my brothers.   Man! How many change their blood type during their life time!  The process is also circuitous; my process will be to ablate(decrease) my WBC’s etc.. so that they do not fight with my brothers stem cells that have been transplanted.  My brother’s parallel process is to increase his WBC so that his stem cell harvesting becomes easier.  Oh Lion King! The Circle of Life.

I started observing when I become emotionally overwhelmed and unable to accept a situation with joy.  There seemed to be three huge drivers to getting me overwhelmed over the last few months – a) when people show love to me b) when I think of my family c) When I think about my dearest colleagues at Premavidya.

I have always believed in the embedded emotive patterns contributing to suffering.  I have been wondering what patterns have contributed to my situation?  The last two seem understandable because of my attachments; but I have had much learning’s from observing why I get emotional when people show so much love to me. I had a realization that this process is increasingly teaching me to enjoy the bliss of being dependent; and the joy of not needing to be in control and strong all the time.  I have spent my life, from the tenderest of age always trying to be been seen in control, always trying to be seen taking care of people, being and appearing strong etc….

The need for control has now become laughably impossible.  And I am discovering it ain’t so bad.  Maybe life is teaching me to accept others love, give myself the power of attorney to be more vulnerable and in that process allowing me to love myself and be loved more than ever before.  Maybe this is what my body is teaching me.  Maybe.  It is not that important as the most important is to let life flow; but will be interesting to see it evolve – to observe whether these thoughts are ephemeral or permanent.

Impending change in blood group does wonderful things to people