Anti-tobacco day !!!

I woke up in the morning to the front page news that Karnataka is going to "ban" sale of all forms of chewing tobacco.

Tamilnadu started today too. This decision is already in force in 20 states across India and 4 territories for more than a year or two. Karnataka is a laggard in terms of adopting it.

But, I hope it does and enforces it as soon as possible. It helps over a period of time.

The key deterrents for the government has been, 300cr annually that it gets taxing tobacco, and also the lobby that greases the right places.

The excuse of Araca nut agriculture  and farmers should not be a big cry. I think simple beetle nut will continue to have its demand.

A few years ago, government banned (One a 2nd Oct - Gandhi Jayanti) smoking in public places, like railway stations, public buses, trains schools, offices etc.

Today, a couple of years down the line, it has a clear impact on the second hand smokers at least. Earlier walking out of the office, just out side main entrance there would always be a gang of smokers, and you have to inhale through to get out and in. Today those same smokers will have to walk a way outside the campus.

Trains and buses have been fairly clean in terms of smoking.

On this day, I had plans with one of the doctors who is treating me, to be at the camps organized to educate people on the impacts of tobacco organized through headandneck.org !

I wish I would have recovered completely to do that.. ! But yes, when I do, everyday I will be "education" for others who care

The "Cosmetics" of it ..

I was having a chat with my guru / mentor / philosopher and was talking about how the radiation and treatment changes my looks.

The skin has darkened, almost burnt look with ugly pigmentation, face is asymmetrical, the head tonsured and how recovery of the "Cosmetics" may take the most of the time
And here is what he told me in return -

"As you look in to the mirror and the seeming exterior is changing, it is something that you are intimately aware of since a kid and its still the same. This is the one that grows your nails, hair and digests food and runs the universe. See if you can constantly stay with this pure unassociated benign-ness and may it get you back to pink of good health"

priceless.... 

Putting a plan .. (and the inevitable tonsure)

Finally, the key doctors of the team talked to each other and explained me a "plan" that makes sense.
I completely give that credit to my surgeon, who has amazing ability to articulate and willingness to work for the patient.

So, the final agreement is let the infection subside to a good level by next Thursday. Then go for a re-plan of the radio with a CT Scan. Stop rest of the chemo, as it enhances the chances of infection and I could hear in their voice that 4 has been enough so not risking anything stopping the chemo.

Then the radio restarts and goes for the doses it needs, mostly 9 or 10 sessions more. The radiologist explained me, that there is a minimum dose that is needed, and he needs to complete.

The key task during this period is going to be keeping the infection at bay.

Only after a few months, of doing finishing the radio, tooth can be extracted. And hopefully in those months, the mouth opens with active physiotherapy of the jaws.

I know, this prolongs the treatment and recovery, and going back to 100% life. But, may be the only sensible plan, as going to a GA surgery to remove one tooth etc. is almost impractical.

Also, after Radio is over (now that Chemo is over), its a part of treatment that is over. One thing to worry, is opening / fibrosis. And may be a few weeks after radio ends, the recovery comes to a stage where I am back active working from home. At least that hope is back on the radar.

Only open item is "how to keep the dental infection" at bay for 3-4  months. Hygiene ? Anti - biotics ? Draining ? etc.

This is certainly progress from y'day.

....and in the mean time, as everyone including the doctor told before it all began, the hair will fall after 4th chemo.

It has started.. en bulk.. time for the cancer "Tonsure" !!! The buzzing clipper ......

Absolute deadlock ... ?!!!?

A lots of ups and downs through the treatment process. But now, for my small non-medical brain, I think it has come to a dead lock situation.

The radiotherapy is broken for a few days, to treat the tooth infection. The second molar, that is causing the swelling. Now, because of the surgery and the radiotherapy mouth does not open more than a few millimeter. And external skin on the cheek is very sensitive.

But the dentists want the second molar to be extracted, to remove the source of infection, which is caused by the the lack of opening most likely any way.

Now, if radiotherapy, rest of it, continues post tooth extraction, there is a chance of bone death (jaw).
So the maxilo-facial surgeons prefer to contain the infection just until Radio is over and wait for a bit to recover and go for tooth extraction, hoping mouth opens up a bit more.

The radiotherapist is telling the dental team, go ahead remove the tooth, and he would re-plan the RT post that heals.

And, if they do listen to that - how would they exactly do the tooth extraction ? will they do again a open face surgery like the original one  ? Not even a simple instrument can go in there and reach second molar now.

Damn !! Its really a dead  lock. Today, I called up the most supporting of the doctors, the one I trust and the one I can talk to and get some real information from, the surgeon - to please OWN the problem and sort out ONE plan with the radiotherapist, who BTW does not even give 30 secs to me when I meet him. He just looks and start talking about solutions, start writing prescriptions. And for small things also, he would ask to meet him across the city. How do I deal with this now ?

The friendliest Dr. among all, got the message from me. I trust him to be able to co-ordinate one sensible out come.

I am sincerely hoping, it not another very harsh surgery followed by another re-planned cycle of chemo.

This is a point, when I feel helpless ! My lay-man head does not see a way out.
This is a point, where all sort of positivity, chin-up, hoping for a better tomorrow - all go for a toss and the pain sets in. May be it had to ! Eventually.....

I am used to find solutions to even toughest problems in my life. Alas !! Can not help in this one.
Well.. may be one. I will take the risk. Stop all radio therapy. Depend of some proven medical science to deal with the infection for 6 weeks, make sure the mouth can open with some exercise. And go for a tooth extraction ? Completely take on myself the risk of discontinuing RT, and hoping enough break will help the tightness of mouth and also hoping there is medicine available to sustain potential infection that long !!!

I am sure, none of the doctors will take this decision. I will have to. In couple of days. I want and deserve ONE shot at life - normal life !!

Unexpected Down Turn !!

Just when I was celebrating 2/3rd of the treatment  behind me, a massive complication shows up.

The swelling in the face went back to tennis ball from the small ping pong ball that was left.

Tight, red, painful, tender cheek that is swollen like a big tennis balls.

Even the doctors panic now. There is no deposit in the pocket, as even after poking 3 needles nothing came out. It was an indication of an Inflection in side there. Pretty nasty place to have infection.

Its such a big regression, like going back to beginning of all the treatment. The stretching pain, accompanied with vomiting every 2 hours.

The lowest point of my treatment cycle. Extremely uncomfortable and painful and, no sense of any road map to get out of it.

Well, body is so exhausted from continuous throwing up, even going around the city meeting different doctors becoming difficult.

Few more check ups today. But somehow, someone should know how to get out of this mess ????

Pulling all possible strings ..

5 days of radiation done post the break. And one chemo. And trust me, the impact of break is already gone. The unease already set in, even if there was a weekend in the middle.

And most concerning thing is the swelling, salivary gland seems to be still active and happily secreting.

But, the doctors are pulling all strings possible. My surgeon ordered a few Hyocine patches from U.K (not available here) which now sticks behind my left here, to inactivate the parotid  gland.

Radiation doctor, was sympathetic to the current state of being, and wants a re-evaluation of the package.

Next Monday, I will go for another CT Scan, and based on that he would take a call on whether we can stop rest of the Chemos and re-evaluate the number of radiation sessions.

Couple  of the things both doctors are saying confidently ( very heartening )  -

1. There is not visible indication of any tumor left

2. After the therapy stops, most troubling impacts, like taste of food, opening of mouth, radiation burns from cheek,  severe 24x7 nausea, all that will recover and gradually become normal in 4-6 weeks.

Each moment that comes to me  passes extremely leisurely.

Internet Commerce - A savior !

My movement have been restricted to home and hospital because of various factors.

- Face one side is swollen and radiation has marked it with dark patches.
- I have now very less immunity because Chemo has knocked down the blood counts
- Limited amount of energy left in me. Preserving to sustain through rest of the treatment (3 more weeks)

Having said that the house has to run and machinary around an urban family today do not understand, the mimitations :)

- The washing machine decided to conk during this time. To my surprise, I could sit home, research all models, choose the one I think suits the family needs, order it from a e-commerce site with credit card. The machine was delivered to me within 2 days and even a pick up of the old one was arranged w/o going out any where.

- Printer inks got over and kids work sheet and other summer work impacted because of that. Again, get on some of the e-commerce site and order on-line. The right stuff at better price than store price, delivered in less than 72 hrs at the door step.

- Figuring out sites now, for kids summer electronics / robotics experiment kits and a various stuff.

- Even the odd bank work, getting a draft done or depositing paperwork for KYC etc are e-mail away, most of the time free and in some cases with a small fee. 

The big stuff where an average Indian consumer had to go to a physical store (Washing machine for example) is no longer a must.  Average daily groceries and vegetables etc. are also delivered fresh to home by big basket, although we do not use it yet.

e-Commerce in India has come off the age. And in my current condition, I feel its a boon !

Formation of formal support groups

The idea of someway giving back to the Cancer community - the patients going though traumatic treatment, the family members around them going through the uncertainties, the doctors in today's format of treatment not getting consolidated meaningful feedback to do better physical and psychological patient expectation management etc. 

My surgeon, who has practiced extensively in U.K. alludes to the point that the patient groups, survivors and the ones going through treatment, are very effective in keeping the over all hope and positivity for the patients to survive the treatment.

After going through Dr. Deepak Chopra's "Quantum Healing" (BTW - one of the best books I have read recently), I seriously tend to believe the frame of mind has a big role to play in healing.

Initial brain storming with my surgeon we think getting some of the corporate hospitals to lend their conference rooms, setting up time with may be monthly frequency, getting the people in there, having a moderated talk and making key points available for all to look at may be good start.

Then, I met a few volunteers from Helpinghands who also have qualified counselors who work for free. They all are giving time to this cause because of their brush with cancer and they want to give some time back.

When I am done with my treatment, and recover a bit of my energy to get on telephone calls, I will reach out to some of my close friends, to have a media partner. Of course creating website + discussion forums is something that can also be done easily.

However, before getting on with this venture, I do want to precisely define the scope and charter of this formation. How much we do that adds value. And how less, that we can sustain.

I do invite ideas in defining this from my readers. Suit me e-mails please !! 

The Elephant in the living room

It has been apparent for a while now, that the face will not come back to near symmetry even after all treatment and recovery is over.

The way it looks after aspirating the deposited saliva each time is an indication of how it would look.

So, the visuals of the future face has a 20% more chubbier left cheek that droops down, dragging the corner of the lips down. Enough to re-do passport, driving license and all other IDs !

This has been a certain something, that everyone knew at home. But no one talked about it. The discussion has always been, it will be normal.

However, last time after the aspiration on my way back, my wife figured this is the right time to start accpeting it.

She broke the silence about it, "You have to prepare yourself to get back your confidence with the new face. When the recovery is complete, you should not let your face pull your own confidence down."

Well ! Its great it came out in the open. And ability to just talk about it openly, and not wishing it away, is the first step to acceptance.

And once acceptance is there, rest of it follows.

Support group

There was a huge curiosity in me as to how the golf ball is coming back in a jiffy after being taken away completely ?

I understood earlier, that the salivary glands secret in to the pocket created by the flap. Rock solid theory and aspiration helps it.

But after 15 radiations done ? The gland is still active ?

Just after 1 day of getting it aspirated, I dropped a message to my surgeon, if I can get another aspiration done. And to my surprise, it was clear saliva around 20 ml. Not thick like last time.

Which to a lay man indicates fresh formation. So the gland is active even after close to 50% of the radiation is done.

Truly appreciate the surgeon accommodating my experiments  providing time.

But this time I went to meet him, I got much more. I found two other patients, going through almost same procedures.

A base to start a support group ! Soon ... 

Finally ! some hope ..

Break for 5 days. Key expectation is to recover the body energy a bit up, reduce some discomfort and go back on treatment.

But the day 1 of the break went in being extremely sick.

I have gone through the calendar, and during the post-surgery recovery and enthusiasm, I did start working 4-5 hrs a day from home. A few calls in a week. Almost always on the e-mail and connected to the team.

But, mid way through Radiation and Chemo, I realized its not going to work that way.

I applied for more leave from work. I dropped a mail to my staff and bosses. Closed some ends and decided to shut down work until I ve the energy. Its not a decision, a compulsion !

People advice not to work during this time. But I did purely because, it keeps me occupied, constructively and that one of the things I know how to do well !!

Day 2, I had some energy and decided to pay visit to my surgeon, who did the surgery. He is absolutely the one because of whom I can even go through toughest treatment. Very positive, instills hope in me. Wanted to go chat with him just to get some hope ! And I did get a plenty.


The "golf ball" hard swelling in my left cheek, he examined and told its fluid deposit and NOT swollen muscle flap. Very key piece of assurance, as that shows one day it will come down.


I did not trust him completely. But was good to hear positive stuff. He could see that in my eyes and asked for "Aspiration".

He inserted a needle through the swollen part of the cheek and drew out 20 ml of thick fluid from there. I have had so many aspirations. But this time, it was like magic. I did feel the "Golf Ball" inflate and soften and the swelling go down by 50% in less than 2 mins.

He said, "Don't lose heart if it builds up again. But this is just to test that that golf ball is not actually hard mass, its fluid under pressure".

I was a complete convert. The whole thing about, I know my body - is out the window ! Trust the doctor.

And the break can now be used not just for rebuilding body, but rebuilding the hope !

He has passed me reference of another young person going through the same treatment, a person who did not abuse tobacco, to chat and form a support group.

Will take on that offer for sure, but for now - 2 days of break left. Let me recover for the rest.

Break

Well it comes to a point where the thin line between what the body can take and how much it can be pushed.

I am at a point, where physically tough to drag on. Exhausted ! 11 kilograms of weight lost.

Only fluid food. Continuous nausea feeling, irritation and pain.

I do notice that at the peak of the pain, body becomes the master - not the mind !! Understandably so.
But the moment the current moment is less painful that the previous one, the mind overtakes. The hope, the positivity - all line up, adjust to the new normal level of functioning and energy and look up from there.

In any case, the doctor also felt I ve reached the 50% of the treatment and visibly exhausted and in pain. So he declared a break from treatment for an extended 5 days period.


Good and bad. Good because no Chemo on Friday, no radiation till Tuesday. But bad because the overall milestone of end of treatment also is pushed out by a few days.

Good for the body, which is knocked down and needs a break. Bad for the mind - which was counting on May 31st to be done with it.

Little bit of learning and and teaching

The quest for finding activities to keep the mind and time occupied continues.
With chemical and nuclear salvo going on the body and mind, its tough to know what I like and what I do not ! What is going to irritate more and what is going to keep me occupied for a while.

But I ve always found something to switch to, when something does not work ! Like the piano thing - worked for 2 days.

The cricket thing was good for a couple of days, but as the energy is knocked down progressively even couple of overs with a smiley ball exhausts me to the level of nausea !

Had to settle for a desk job :) Figured, my son has some interest to learn JAVA / HTML.

I personally am not a web programmer. Never used these as tools to develop anything.

It was a new, light weight thing to explore and at the same time spend quality time time with the kid.

Amazingly simplified resources in the web, and every day 2-3 hrs go by. Son is happy creating CLASS files. Doing simple stuff, simple logic coming to execution.

Hope this interest continues for a few days !!

Reaching Out

In my quest for feeling better through these procedures, I have experimented many things.
I did chronicle many of them in my previous blog posts.

From yesterday, I ve added a new powerful entry to the book.

I have identified a handful of people, whom I will reach out to for any kind of help proactively.

Just call and talk. Just be myself with my true feelings. No need to be positive, negative, neutral. No bias and no additional management of true emotions.

Of course, with selected audience who know you well enough.

If well wishers offering help, I accept it whole heatedly.  "Can I refill beans in your bean bag as they are sagging ?" Asks my neighbor ! I say "Yes Please".

I call up a colleague and ask him, if he could accompany me to a radiation session on a working day, as my wife has to be home with kids when our domestic help is off. Proactively reaching out.

No more, actively managing the situation. Reaching out for help and taking the help that comes along.

In the process, I do see a ego cleaning at a very sublime level. I called my guru / philosopher ex-boss and he articulated this back to me in very simple language and offered his wisdom on the "deepest level of acceptance" and how it makes moments pass without being a burden.

So, much to experiment and do and learn and most importantly "unlearn" !!

The Milestones

3 out of 6 chemo done. That makes up the 50% mark. Half way !

It is truly a psychological milestone. It makes one look forward to reducing percentage of the dreaded treatment left behind.  Physical condition may not be agreeing, but the mind knows counting and what to look forward to. Sets expectations. Generates that extra ounce of enthusiasm to knock down the "left over" metrics from 50% to 49% and down !


May be the download bars on computer should switch between "what is left" vs "what percent is done" ! Depending on why provides more calm to the user :)

While on the topic of setting expectations, I will narrate another cancer ward story with my dear readers.

One gentleman around 75 yrs of age, comes of chemo. A very good oncologist who was talking to his kin at a very husk voice and being honest - "If I were in this stage and with this cancer, I would rather not live" was part of the overall explanation. Of course he did not want the patient to hear it.

But he did ! He smiles and says - " Doctor - for my living is very very minimal amount of functionality. Can you get me to a stage where I can sit on a wheel chair, watch TV and watch grand kids and others in the house just doing their stuff ?" !

Expectation was laid out as a pretty minimal set, for his - that was good enough living, better than not living.

Patient Expectation Management

Last Friday something weird happened. I have so far had good doctors time, in terms of them listening to me, answering queries, clarifying some of the up coming road map and expectations !

However, over last week I notice a different change and able to connect the dots now.

The surgeon, I called up about some discomfort I have been having with overall Chemo / Radio, who used to see me every other day post surgery, gave a cold shoulder to start with.

"This treatment package is decided based on a 100s of similar cases and fitting in a Gaussian Distribution. For a fraction of patients, it will be over treatment and less - "  for some. I trust the radiologist, just go with it. If you definitely want to meet me, then come".


Called Radiologist - " I will talk to you only after 2 weeks of radiation over. Not before that."

Chemo doctor, as most of my discomfort comes from the Chemo. "We can review the Chemo schedule only after 3-4 cycles, based on the blood count and other vitals. We can give you a break but not take you off the treatment".


But then, it was not always like this when it all started. This is where I started connecting the dots. Originally when I went through surgery, I was given some timelines, "Next week you ll be able to walk. This tube will come out in a few more days" etc.

And I notice, post surgery period is actually progressive in nature. Which means, everyday you see some "positive" movement in your condition. Managing patient emotion during progress is much easier job.

While, they all know, way too better what I did, that "Chemo and Radio" are going to be regressive in nature. Everyday the discomfort would increase - bit by bit.


So, the patient management started early. Its easy for me to go back in time and connect the dots now.

Originally they kept saying, you just need a couple of radiations. They kept mentioning Chemo word sparingly. As the planning closed, they mentioned, there will be a weekly injection (did not name it "Chemo") to aid radiation.

By, the time the final plan was presented, 6 and half weeks of radio and chemo, they told me, we will do a second CT Scan after 10 - 12 days, and see if there is any revision possible.

If chemo is bothering, we will review after the 4th cycle. All that to, now - "Lets talk only after 2 weeks."


Its actually tough for a doctor to manage patient emotion in a regressive condition. When something gets better each day, one can paint a story, a hope !

Now, I know the reviews are for me to look forwards to something intermittent during this phase (knowing this does not help ). The review result is going to be "lets continue with the complete course".

I will not even be surprised if towards the end of the cycles, they say they want to "review" after the course, which in my mind is "End of treatment" !!!

Cricket Fever

Couple of days after the chemo are the worst. When one does not have any energy. No interest in any thing. Can not look at TV. Talk to any one. Even a small sounds makes one irritated.

Continuous vomiting sensation. 

So, I requested the kids to play cricket indoor with a smiley soft ball (safety) and a small bay racket.

The entire family joined ! Brother, 3 kids in the house. My mom, wife and sister-in-law were spectators and cheer leads.

Nice music in the back ground playing on the mobile phone playlist.


One and half hour of solid distraction to head and the dreaded post chemo sensation.

Watching cricket can be boring. But playing it  will never be :)

Mind over matter

I did mention earlier, radiation and chemo side effects are not easy to deal with. Even for the strongest in the mind person.

And strange condition this is - All the problems / discomfort are caused by the treatment and not by the decease it self :)

So, in a quest to see what keeps the mind out of irritation during this phase, I gave up on finding a silver bullet. I am focusing on small silly fun stuff with friends, whoever is available during Chemo (and there are a few always ready to spend their time), count all blessings and good wishes, and acknowledge them. Take out individual thoughts in the head that could make me feel down, and openly ask for help.

Few examples :

Kids have not been going out any where this summer vacation. With continuous trips to hospital, wife being super busy with home and me, kids not getting to be kids. I went out and asked few close friends, if they do not mind taking the boys out for a cartoon movie or water park or anything. And few of them did come back happily to help.

Food, drink or thought there of is the biggest trigger of irritation but at the same time, most needed to keep the body up during this time. So, instead of feeling bad about asking around what I may be able to eat, I ve started being very prescriptive about what I would like to eat. And it helps my wife too in  a way.

Spend a bit of time with the volunteers who come to cancer wards, counseling patients and their attendants. Their method, approach, noble intention, funding etc. Some of them starting to read betaalgyan: cancer diaries now !

My ex-boss went on a 3 days temple and puja trip, and came also with Rudrakhsha beads for me to use in my treatment. Blessing to have people think so much about you !!



Silly fun in the ward:

Many many years ago, pre-independence India, a lot of infant mortality was there. IN villages where our grand parents and parents grew up, out of every 4-5 deaths 1 kid used to survive infancy. Nutrition, hygiene, awareness, access - everything mattered. But one superstition was to their rescue !

They would always name the kids something un-holy, in those days it would me something filthy or from a very lower cast and all that. And the superstition went this way ! Even "Yama: the God of death" wont touch them. And the kids will survive. Well.. with a filthy name. Even my mom has one :)

So, when the doctors in the oncology, take no ownership of cure, we suggested them to raise awareness about this superstition - let name newborns "Sarcoma", "Carcinoma", "Carboplatin", "Cisplatin" :) No need to find cancer vaccination !!!


Bottom line : No silver bullet. Many things together to keep the mind off the irritation. I do  get irritated once in a while, and unknowingly tell something harsh to wife and kids. Hope with conscious practice that will become nil over the period of treatment.

Pushing it ..

The effects of Chemo and Radiation were way too underestimated by me !!
It does take a huge toll on the mind and body in a very strange and irritating way.

Even looking at food and drink gives the nauseating feeling, but the only remedy is to keep eating and drinking - nourishing the body, compensating the loss quickly.

It slowly becomes a war over mind. Mind goes the numb, lethargic way ! wants to stay away from any form of action. Digestive system takes a toss. Even the activities I enjoy, like my morning walk, Surya Namaskar look too dull and bland.

And, I ve done outrageous experiments to keep my mind occupied and away from this constant irritation. I ve NO SENSE of music. But I have tried my hands at "piano self learning" in last two days :) that desperate.

My quest is not over - I can take input. Reading good book. Not helping. Chating with friends, a bit !
Music, not meant to ;) Sleep - not coming !!

I know it is a war on mind. Just need to find what tool to use. How far to push !! 

Ok ! May be one complain

Right after posting a blog about "how we should all stop complaining", I am going back on my own commitment.

I will have to bitch about the medical administration in general. So, far I have talked about  the doctors, the nursing staff etc. However, there are many back end staff who are equally responsible for making patient experience (good or bad).

And some young doctors who you have to bump in to during this experience too.

I will narrate some of my experiences -

I had a consultation with the maxillo-facial surgeon in a very posh looking private hospital. After I met him, I came to the front desk and asked, "how much do I have to pay" ?

She said, a figure which I paid and came home (45 mins of drive). And after I got home, I got a very angry woman call - " I ve not paid money for certain syringe and gauge that was used in a small procedure".

I was really pissed by that call. I asked them, "How much do I owe ? Should not they tell me a complete amount with all line items ? Are they giving me the angry call,  because their pharmacy and nursing and front desk billing co-ordination is week ? I am supposed to do that ? "

Second incident - The big hospital that administers Chemo, has a dental wing in another building.
My surgeon wanted me to stop by for 5 mins in dental wing, as I was waiting for discharge after the chemo was over. I requested the sister if I could walk out, meet him for 5 mins and come back, while paper work is taking place. She is NOT supposed to let go patients out of the ward, if not discharged, in this case, the insurance folks did not clear the billing yet, although all other formalities were done.

I smooth talked her out. Then I was caught by the security guard. Smooth talked him out. Then a doctor came along. And said, its against protocol to let you go out, without a wheel chair and an attendant. I told, I am feeling extremely fit, and can walk. Why should I get on a wheel chair ? I told him, if he is thinking I am running away before billing is settled, then please be clear about it. He did not say anything and let me go to dental wing.

After 3-5 mins, I see a nurse from chemo ward running to the dental wing, almost in tears, finding me. The same doctor who let me know, has called this poor nurse and blasted her for not following the protocol. While he himself could have been stern, when he caught me and told - "I can not allow this" Simple. He lets me go, but take advantage of office hierarchy to blast the poor young woman.

That definitely ticked me off. And I went berserk over that doctor giving him all sorts of gyan. I noticed one thing, they have 15 mins to listen through your abuse but too busy to spend 5 mins in doing the right thing in the first place.

Then comes the upper tier of inefficiency.

My Radiation Therapist, looking at all teh reports, kept saying 33 sittings of radiation, and once a week chemo. He mentioned this whole thing as a "Package". More like the travel agents do. A package.

Ok. I asked what if CT Scan is super clean ? Will it become 25 radiations, will the chemo reduce. The answer is "its a package and we will get pre-approval for the entire treatment from your insurance, do not worry".

Point is lost - Insurance approval was my last worry ! My worry was lack of information and logic of my treatment. Then he sends me to the "chemo" doctor, saying - "I know what he will tell you, but he is sitting there just to talk about chemo. So you better go and talk to him".

What a way to refer. What confidence builder ??

The "chemo" doctor, is absolute mess. He says, you ll have to go through "Cisplatin Single Agent".
I asked "why?". He said, as the lymphomas were touched.

I asked, 3 out of 45  were touched. CT Scan says, all the metahistais is also cut during surgery.

What would have been the dosage and frequency had the count been 10 out of 45 ?

Can you imagine the answer ? "Its a package" !! No logic, explanation what so over.

Any way, I went on with the treatment. My wife, my brother - all looking at my like I am a nut case, trying to demand unreasonable information from doctors.

The the most irritating thing happened. The package that radiation oncologist talked about was not the package chemo guy talked about. As a result, I got thoroughly confused and assumed its all ONE package. And got the insurance pre-approval. Even when I went to chemo treatment, they happily medicated me. Only when it was over, i wanted to be discharged, they mentioned chemo is separate approval, which is not even initiated. Whoa !! 5 hrs of waiting to be discharged.

And while being discharged I see 3 different tablets being prescribed for 5 days -

1. One of them is potent habit-forming anti-anxiety anti-depressant drug. I asked why do I have to take this ? Nurse answers to able able to sleep during night. What if I do not have anxiety about Chemo ? why should I take such potent anti-depressants ? Its "protocol" for every Chemo cases.

2. A very high powerful steroidal anti-inflammatory. During the consultation, I did not recall any one telling me that some part of body will swell up after chemo. Why ? Part of the protocol ? No one is there to explain ! 

The Cancer Ward Stories of compassion

During the course of Chemo in the day ward, came across this amazing story of compassion. Definitely worth recording it here.


A very young woman, a daily laborer, was diagnosed with Ovarian cancer and was in the ward for treatment.

To make the situation worse, she was also pregnant. The doctors where brain storming on whether to save the baby or treat the mom, as both together seemed not feasible.

At the same time, an upper middle class woman comes with his son for breast cancer treatment. The Son had money and was ready to provide the most comfortable care for this mom.

But, chemo day wards are great equalizers. No private rooms. All come to chemo ward. He was not too happy, but nothing is available and he wanted his mom to be treated sooner than later. So he settled his mom in the day ward, next to the coolie.

A lil bit of disappointment do show up in the conversation and voice !

Over the day, the young pregnant, penniless woman, build of communication and friendship with this upper economic section breast cancer patient.

Most importantly, knowing she is upset, she came along, gave her a head massage, combed her hair and all.

The son and the mother were so touched by it that they felt ashamed that they were complaining about such a small issue of not getting to be treated privately. Where this woman, who is much less fortunate and in much critical juncture of her life, is stepping up to help her.

May be I should add a "watched metrics" to track amount of times I complain in a day. To train the subconscious, not to complain ! 

The Chemical Man

The last leg of medical treatment experience - chemo therapy is done. I mean, its begun. Every Friday for next 6 Fridays.

I checked in to the hospital at 10 mins to 9AM, for a day admission in the chemo ward.

Single agent Cispaltin is the chosen chemo for my condition under a local program name called "Safety First".

Well, the procedure was just like a 5 hr IV fluid. 2 hrs of hydration and glucose water. One hour of cisplatin chemo. 2 hours of hydration again.

And a brief break in the middle to sleep under the radiator for the radiation.

The name and the description of the side effects makes it feel like a monstrous treatment. May be it will dawn in after a couple of session. But the first session was pretty joyful. With two very close friends by the side, making merry all along. Very nice attending staff, who figured, this booth has the most amount of fun and hung around whenever they had time.

Coming back home, I did have some uneasy feeling, mostly digestion related. My next morning jogging reduced to walking. Again, not because there is a specific weakness, but more of an unease, which can be ignored with a bit of effort.

I do expect some more level of unease after multiple chemo sessions !!

But, lets live in the present, which is good :)

On the positive side, my left wrist is regaining strength to a level, I could perform 2 Suryanamaskar.
Another 2 days, I should be able to do 12 - 24 of them. And this is complete exercise.

The Nuclear Man

Radition - Check !!

One more experience recorded. After a clean CT scan report, the process has begun.
The doctor gave me a tour of the machine and the process.

Strange ! It  really does not have any radioactive material.

Its just a linear particle accelerator.

When switched off, even kids  can play on the machine and nothing will happen. No one sports a lead-apron like we have seen in the movies !

When ON, no one other that the person going through radiation can be inside. Of course, the room has solid 1.2M wide concrete walls for the rays not to escape ! Sophisticated monitoring happens from outside.

Once changing in to a hospital gown, walk in to the chamber, sleep on the bed, under the radiator !
The custom made Mask is fixed on the face and most of the radiated part is made immobile by tightening the mask with fixtures.

For about 5 mins after that, there will be a few machine noise, the the nurses come back in again, and release the fixtures so that one can walk out.

As simple as that.

The scariest part was, when my face, head was immobilized, they  technicians were calibrating and setting up the machine precisely. And they were talking among themselves, "left side or right side ?" ! Fundamental confusions when you can not talk but can listen ? I guess they did radiate only the left side, which is right :)

When I did come out, they took my temperature, my BP etc.

The medicine oncologist did not budge to request of Chemo reduction :) OK ! I tried. Some single agent Chemo, each Friday starting tomorrow. That will be a day long process, in a bed, with IV fluid and medicine dripping in.

That will be a new experience tomorrow !! Looking forward to, now that it is inevitable.

"Spaced Out"

The count down has begun for the next phase of therapy. Coming Monday, I would meet the "Radiological Oncologist" to plan out whats next.

Radiation ? Chemo ? How many sessions ?

More over, how much time ? What are the effects going to be ? Fatigue, Skin Burn ? Dry mouth and throat ?

Some people, who have been through this process, do stop by and say "Hang in there. Its going to be tough".

People who have not been through this and ask me,  I answer the opposite, "I think with the surgery the worst is over. Radiation will be just like a glorified X-Ray".

All that and my commitment to myself, not to google any thing related to my treatment keeps me open for any kind of experience. Will take it as it comes.

But, then out of curiosity I did ask the doctor today to walk me through a "trailer" of the next phase therapy.

He kept it very brief - "You go home today. As a doctor I should not say this - but have a drink, call in a few friends and watch the match. Because you will be spaced out once the radiation and/or chemo starts, and it may go on for 4-6 weeks".

Ample trailer of time to come :)


spaced′-out′

adj. Slang.

1. dazed or stupefied by narcotic drugs.

2. dreamily or eerily out of touch with reality; disoriented, forgetful, or dazed.

Preamble to Radiation and Chemo

It was an interesting day with Radiation Oncologist. I was meeting him for the first time, as the treatment moves in to the second phase.
Very calm, composed, means-business kind of a person who grew more and more assuring over the conversation.
He laid out the process and did not mean to explain too many things ! More in mater-of-factlyfood.  way of explaining what I ve to go through. It was a self-driven Q&A from my side.
After he went through all the reports - I started asking my Qs.
Q. So ! How does it look ? What it going to be like ?
A. Expect 66 grs of radiation. Which is like 33 sittings, 5 days a week. Will go a lil over 6 weeks.
Q. Do I need Chemo ? I am really hoping, there is no need for chemo !!! 
A. You need chemo. Chemo's role here is to make sure radiation is effective. We should reach out to the right cells, the cells with cut off oxygen supplies too that Chemo will identify. Once a week 3-4 hours in hospital for Chemo.
Q. What do I expect ? "Spaced Out" ?? Do I need to tonsure all my hair ? Weakness after radiation and Chemo ?
A. Nope. No weakness as long as nutrition is fine. You should drink around 4 ltrs of liquid nutritious stuff every day and take care of mouth blisters by rinsing every hour with Saline water. Everything else will be ok.
That was assuring in a way. He even mentioned, you can just continue to work !
Plenty of nightmares coming true - like endless radiation sessions, chemo etc. But overall, felt reassured listening to the Dr. that the side effects are not as horrible described normally. No amount of negotiation was entertained to drop Chemo.
Rest of the process was easy. Creating a mask, a mould from a molten synthetic material that was poured on my face, neck and shoulders.
Once it solidified, I had to wear the mask, and go through a CT Scan. Not as miserable as MRI, thankfully. Takes much less time and not at all noisy. But the iodine injection through the vein is an uniquely painful experience of ice cold chemical going through the veins.
Fingers, crossed - hoping to get a Clean CT Scan report, and hope the radiation sessions will reduce to around 50 and chemo will reduce proportionately

Dont make it look so easy !!

Even though the swelling is not done with, I decided to get back to work ! Its closing on 4 weeks since the surgery.

Body has recovered, I can talk on many phone calls. Morning jogging started.

So, why not give mind some respite and get back to work any way ?

That was the thought ! Also, being in this industry, I do not have to go any where with this face. I can work all I want from my home.

So, back to work finally ! 4th week post surgery.

Before I went on to surgery, I reached out to all the the smokers and tobacco users I knew at work, and sincerely asked them to quit.

Well in my pep-talk it was worded like this, "Guys ! When I come back, if I see any of you using tobacco, I will Kill You before tobacco does. Trust me, it will be a much better, easier and less painful death" !

Getting back to work, on-line - A lot of those people I pinged, and followed up. Asked them if they have been off smoking / chewing. They asked me my welfare, more over they have been going through the blog staying informed. 

And one thing I heard unanimously from all of them, "Don't make it look so easy !! Dealing with cancer, surgery and all. The fear and closeness of the cancer attack, is helping us get over our habits. And if you make it look so easy, as if it is just a viral fever that takes you off for couple of weeks, then it would not do good to our resolve to stay off" !!

What a problem to deal with ? :) Yeah - will send them some gory pictures of the surgery, post-op days and the reports !! That will not make it look easy for sure....

Spring Board

Staying positive through out is such a drab !!

It almost feels artificial. The day brought in various small incidents, that could combine all their forces to create an avalanche of negativity.

And they did !! The base of it all was of course the Swelling not going down at all. With the rest of the body completely recovered, just the swelling holding me back at home, started feeling like a jail.

My mom - pinched her finger badly in the bath room door. Kids results came, too bad. Wife broke down in to tears, while all along she has been the pillar of strength.

All that together, created a real depressing set of emotions in the head. And all  I could do was to respect all the emotions, irrespective of type. Go with the flow. It had its time and its passing.

I told my wife not to sit in front of the temple / God. Not to chant slokas etc. That makes one more depressed. She found it counter intuitive but tried it nevertheless.

I went out of the house with kids any way after sometime, without having any handkerchief to hide my face. Bought some cool kinnect games for kids !

They came back home and had a blast. Will worry about there exam and results, when I can help them in studies !!

Overall, the day ended in a very very positive note.

And I thought, you can not  jump high, if you do not  push down first. Its a spring board. So totally worth respecting the negativity as much as we do to the positivity.Just not dwell in it !!

The Nutritionist @ home

When the RT Tube food started in the ward, post ICU days, it was daal paani (protein) , very thin rava kanji (carb) ,  tender coconut water, milk (the whole food). 150 ml each one of these, and total 6 servings 2 hrs apart.

And those were the days, my wife would be sitting with me through out the day in the ward, and being concerned, "Is this enough nutrition for some one to sustain and recover ?" One of the key motivation for her to learn how to RT Feed (using the tube and the syringe) was to figure out what else can slip through this tube !

Her mind was already looking forward to the days when I am home, and she making sure some variety of food goes in.

I used to smile and say, "I can not taste any way, it goes right in to my stomach. So all that matters is carb, fat, protein + Vitamins." She was not convinced.

When I came back home, she did start grinding up fruits and double straining it, vegetables, and any thing that can be brought to the same consistency level that can go through the tube.

One the tube was off, and I could start taking food using a straw or spoon through mouth, her innovation went up multifold  in cooking up interesting dishes which are semi solid.

Many ways to mix plenty of vegetables, creative ways of sprinkling in ghee for fat, fruit pulps, many grain types and a very gradual conditioning of the taste so that the taste buds start coming back to life.

I know, nutrition is a main stream study now in many schools - and she can be the Principal of those schools :)

The changing nature of the defect

The only major defect in the surgery ( The Bug ) has become a major worry over the period of days, while rest of the recovery has been amazing.

The swelling, which was a pocket of salivary fluid, that used to collect around 30 ml every day, was religiously aspirated by the doctors every alternate day.

It would feel amazingly relaxed, when the balloon is deflated, on the day of aspiration. For next 30 hrs or so, the swelling would increase as more and more saliva is secreted, until it hits the max limit and then a very stretching pain would begin. Something, I would have to bear for 18 hrs more, before the aspiration happens again !

Those 18 hrs, do feel like eternity. But strange is human phsycology - those 18 hrs would be forgotten the moment aspiration happens and the relief comes in, even if I know it is temporary.

However, it was not supposed to be this simple. Idea was to wait this out with aspirations, until 6th week, when the radiation starts. And during radiation, the salivary gland will be killed any way, solving it for long term.

However, aspirating it for a week or so, has needled the cheek area so much, that the tissues, freshly out from a major surgery, rebelled.

From second week on wards, the needle aspiration drew less and less saliva and more blood.
The ONE big pocket became multiple small pockets. More spread in to the tissues than a mere pocket of fluid to tap in.

The swelling is more of hematoma (blood clotting) and edima (tissue swelling because of local trauma) mixed with salivary fluid dispersed in to the tissues among some what healing tissues.

Its complex issue now, no longer isolated to just insert a needle and provide relief for few hours.

All the plans, root cause analysis, everything is back to the white board ? Do we need Hyocine patch ? source it from UK, as it is not available in India to kill the paratoid gland ?

Will it cause eye infection, as the swelling has reached the left eye. I am back on antibiotic, and painkillers and anti-inflamatory drugs. Something, I was off for more that 3-4 days now.

This bug is taking its own course. Staying ahead of what doctors could think of.

But then, I was not expecting everything to be smooth. There has to be some catch .. somewhere !!

Vices as virtues

Everyone knows, for one to sail through tough times like this, one has to stay positive, hope for the best. Do not think about dire consequences or eventualities.

Something, which is very easily said than done ! Every well wisher, visiting me repeats it "Stay positive - fight it out !"

Well.. I was thinking, "peace of cake" ! Just keep cracking the jokes, stay happy, isolate the pain in the head, ask questions about the plan, but do not expect any thing from it, etc.

It does work - with some gotchas ! And profound learning such as how some of the "vices" and "deplorable" thoughts can come handy in these conditions to take your mind off the negative track !!

Key causes of negativity that repeatedly made me depressed (especially when  alone), and my real "selfish" thoughts to pull me out of the negativity -

Thought - This condition is completely earned by me and my bad habit. I am an aware person. I knew tobacco chewing can cause cancer. I knew what it means. Why did I get hooked ???

Counter Thought - Lots of people go through worse, where they do not find the cause why it happened to them ? Is it not better at least I know the root cause ?

Thought - Feel so guilty looking at my wife, working 24x7, taking care of me, the kids the house. Dealing with the feelings of uncertainty ! I am so helpless ! Kids have secured worst ever grades in the exam and no attention have been paid during this time.

Counter Thought - Assuming the treatment goes on for 10 weeks total, its is 10 weeks out of 16 yrs of marriage. And in the 16 yrs, I ve done more than enough to keep my wife / family happy. No need to feel guilty. No one is guaranteed to have a 100% happy life. Should not be expected too. 

Bad News - The day I got the MRI report, I also got a very bad and depressing news. My wife's cousin sister's husband, all of 34 yrs of age, suddenly passed away while being air lifted to Mumbai. Diagnosed with Blood cancer. No bad habit. Very clean person. Very brilliant IIT grad and with a small baby. All of a sudden. That's the dark spell of cancer.

 Counter Thought - Well ! Two son-in-laws of one family just can not die together. May be it happened to clear the counter. I am safe !! Yes.. no other way to maintain positivity when you have your own cancer report in hand and you hear your relative, younger than you dieing of it.

Bad News -  My closest friends mom, at the age of 65 went through cancer surgery and chemo last year and recovered fine. All check ups look great. It was a positive news for me, as it gave confidence to me that this thing is really curable. But 20th Post OP, day I got a call that she is being taken in to hospital again, as the tumors showed up somewhere else and grown to a size of a golf ball already, irrespective of regular check ups. This can induce real bad thoughts. Whats the point of going through so many treatments, if this thing comes back any way ? 

Counter Thought - Well not much for this one ! More in line of, I am more prepared with the right team of doctors, and co-designing the treatment and check up schedule to make sure, it does not recur.


Bottom-line is, going through this journey, needs a lot of positive thinking. But even positive thinking is not going to be easy as the spirit that aids it will be shaken by news and events that will happen when you do not expect to hear any of that. The spirit will be shaken by your own sense of guilt, and helplessness. Spirit will be stirred because you causing pain to people you love.

And, bringing back the focus back on to self, helps !

I can go back to my self-less self, when (not if) its all good ! Soon !!

Compassion

Its been years we have very nice domestic helps. The maid is a member of the  family.
We do not have a fixed money / salary relation in a sense. There is a token amount per month.

But the way it works is, she takes advance for years worth of salary for being able to manage big events for her family.

Then every year around summer, we pay for her kids school fees and books. Every Diwali, she asks us for some lifestyle purchases, like microwave oven, computer for kids etc.

Point is, it has not been a salary bound relationship so much and she has been of tremendous help over the years.  With me falling ill, she has this heightened sense of responsibility. Comes early. Cleans up my office room first, so that I can settle there for the day early on.

Same relation with the driver. Again, money wise, they are always over compensated and more than that in the time of need, we have lent them up to years worth of advance money. Since the diagnosis, there are multiple trips across the city for meeting doctors, going to diagnostic centers, hospital trips by the family. Airport pick up and drop offs for the visiting family members. Not even Sundays have been  holidays for him last month ! Apart from driving around in a city like Bangalore, he is also doing all the shopping needed to keep the house running. He comes early in the morning, so that my elder kid does not miss tennis practice, stays well late till 9PM until all appointments are over.


So, this month end, when I decided to pay the salaries, I wanted to add 30-40% more than their monthly due.

But the response we got was a true expression of compassion.

The maid said, "Cut from my advance madam this month. You need money more now" !

The driver refused to accept the extra, "I am glad I am of use when there is a need. I can not accept money for that".

The proof of existence of humanity and compassion, is already healing me :)

The Outdoor Endeavors

I was itching to go out of the house, do some of my own stuff. Not depend on some one for every thing. I chose the Saturday, 30th March, 18th Post Op day to do some of that.

It was more of a self confidence building.

What if the swelling, the bug in the surgery, does not have a fix ? Will I sit inside the house rest of my life ? I will accept an asymmetric face and still go out there as rest of the body and mind is just fine.

There is also a food pipe hanging from Nose. Some open stitches and staples on left hand and neck.

But sneaked out of house in the morning, with the driver. Went to the near by bank, and got a demand draft done for the school fees. Went to the school, stood in the line for close to 20 mins, before I could pay the fees and collect the receipt. Over all a 2hr 15 min, out in the city.


A lot of people did give the stare at the walking medical experiment. Some asked - "I Smiled and responded - accident" !

Wife was fuming mad at me for stepping out on my own even before the tubes are out and the stitches are out. Rightfully so, as body was in much more vulnerable state to pick up any infection from the crowd.

But it felt great to just get out and be able to do stuff that needed to be done any way.

The day that started with a bit of adventure ended with another Small Win. The doctor checked the internal healing and declared me fit to take food through mouth.

The last tube is gone !!

Religion and Faith

There are so many touch points with various faith and religion during this time. It is almost noticeable. Wanted to dedicate one blog post to all such events during this process.


When we were discussing the surgery date, my key criteria were

1. As soon as possible
2. All the doctors from the panel selected are available

For my mother-in-law it was "Which day of the week ? Tuesday is not good. Whats my raasi and nakshtra ?"

My mom dug up all the old shelves and found the horoscope done when I was a child and sent to an astrologer to find the write time to be operated on.

One of my very close friends at work, sends me "Maha Mritunjaya Mantra", reciting it would fend off fear and imminent death. So very sweet way of showing concern. Another friend, told me to listen to "Hanuman Chalisa" every day.

My neighbors, devotees of Sri Aurovindo, asked for a lamp to be set up for the entire duration of surgery.

Another neighbor, who is practicing Buddhism, came to house and told my wife to come along to the Budha Center. She narrated miracles that has happened purely because of the faith.

My ex-boss, did Arunachala puja ! Another neighbor committed to go walk the 15 kms around Thiruvanmalai temple when everything is alright and I am back to normalcy !

My sisters family held fast for a day and went to a Shiva temple to do "Rudrabhiseka".

My wife wanted the Sacred Thread to be on me when I go to operation theater (something that is not allowed - not even a simple thread on one's body is allowed when one goes in to OT).  She also wanted me to go to a Shiva temple near by before heading to the OT.

Many others, offered prayers, lit candles, sat near a lamp through out the surgery and continue to offer prayers everyday.

Even when I ve tubes attached to my face, my neighbor and close friend, takes me to Sri Aurovindo ashram in Ulsoor in the evening to spend some time in meditation in absolute serene environment.

Multitude of faith, multitude of deities, Several prayers - one intention ! Very noble and very genuine.

So very touched by the sheer number of genuine well wishers !!

Dear friends - "I ve full faith in you. Your love is my religion now".

My experiments with pain

When there are several parts of your body under pain, brain does not know which one to crib about :)

However, as part of the healing process, most of the areas stopped bothering me. The thigh has just a skin scrape, that healed first, by 12th post up day. Bandage out. Skin is regenerating. Its still a sensitive piece, but can not be categorized as painful.

Then the hand, the immobilizing cast is out. Its the left wrist, so with a soft bandage movement and lifting is a problem. This one I know will take a month before I am doing a push up or a surya namaskar. But this pain is more of a numbing pain, its like few nerves are cut. And the place has become dead, not completely so.. but with some ticklish sensitiveness. So one pain type - numbing, ticklish sensitive. And in certain angles, it sends a signal like electrocution.

The comes the left shoulder, where the 7 inch oozing tubes were inserted all the way in to the neck.
Here it is a bigger area, and is again numb because of some nerve damage, and very different type of pain. This is strange because, if one touches is softly, it gives very unpleasant feeling. But I can bang the shoulder hard with my right fist, does not bother much !

Neck and face - main areas of surgery. The neck pain is more of stifling nature. Limited degree of rotation. There is a throbbing pain, the ones that pushes someone to a pain killer, along the line of the surgery and the stitches. Almost constantly there. Then cheek portion is like a foreign body stuck on the the face, it is again a numbing pain. So sensitive, that the thought of running a razor for shaving is nerve wrecking.

I wanted to focus on managing my pain, using pure common sense. And the first step to that was to segregate, classify all the different parts that pain.

Most of the numbing, nerve damage related ones, I figured can be relieved by local muscle exercises. Few experiments, and one can settle on the right motions of the right body parts to control and reduce that pain.

The next easier one to deal with is - the stiffness in the neck because of the surgery line. I figured, once the stainless staples that holds the flesh along the line of surgery is gone, may be it would be ok on it own. So, leave it alone. Turn the body too when head has to turn. Check !!

Now comes the most painful part, the stretching cheek because of the bug in the surgery, and the throbbing pain. Doctor had prescribed a 6 painkillers a day ! Diclofenacs and Acetofenomins.

But, I know they cause havoc in the stomach. This is the part that took, most amount of work to work around it.

The first experiment was to just "feel" the pain, meditate on the throbbing and many times I fell asleep just doing that. And it was the best way to get in to meditative state. I can never medidate and keep my mind focused on one thing. However, focusing on a throbbing pain was quite easy !!

With that I would slowly raise the bar of tolerance and reduce the number of pills going through. Another SMALL win. By 15th post op, I was free of pain killers. And also found out alternative way of Diclofenac administration - Skin Patch ! No longer need to worry about stomach issues, no more pills. I stacked a few of them, in case my heightened tolerance is tested again.

Another interesting experiment was quite accidental. When I used to lie down and take the throbbing pain, my wife would run her fingers through my hair to feel better. Surprisingly I felt that multiplies the pain. I could feel the pain from my neck and cheek spreading through the line of her finger motion to my head !!  But you don't tell some one who is trying to obviously help to reduce the pain, to go away :) Thinking out of the box, quickly, I suggested her to run her fingers on the numbing, sensitive portion, quite in different places of my body which was painful when touched softly.

Viola ! That did the trick. It was amazing distraction for the throbbing neck line and cheek pain. Many times, I went to sleep with this. 

Growing Home Sick

Saturday, 5 days after the surgery, my brother went back to his job. I started missing the medical talk with a doctor brother during the long nights. My curious mind needs information. Assertion of data points and I committed not to google any thing !


My brother-in-law comes in for a week for the night duty. He is a peoples person. Within a day, all the hospital staff, started greeting him "Good morning Sir, good evening sir".

The more and more my body started recovering and getting back energy to stand, walk, go to the bath room on my own, I started missing home. I always, thought if I am able they will send me back soon.
Take off all the tubes. My problem with abundant free time will some how reduce if I am home.

All my negotiations, with doctors revolved around reducing number of pricks in a day, and reducing number of tubes. Some pricks I could successfully negotiate, but the RT Tube for feeding, Oozing tube from neck, and IV line needed to be there.

The swelling bug, hit me worst Saturday night, and I SOS'ed doctor late night. He tried to come and aspirate with a syringe, guided by ultra sound report of fluid deposit, how ever it was too risky and any touch of the flap would cause serious flap failure.

On one side, life was simplifying with reduced pricks, medication and even more mobility and on the others ide it was being more painful because of the new complication of saliva deposit.

I was waiting each morning, for my wife to show up, after sending off the kids to school (exam season). When she shows up, she picked the job off giving me the sponge bath (she was not happy with what nurses did), feeding the RT feed through the nose tube (she wanted to master it before I go home).

I would joke naughtily with her - "Its been a while we have taken a bath together :)" while see used to give me sponge bath.

Doctors gave me an estimation of 10 days in the ward before I can go home. I was calculating in my mind, it should not be more than 1 week.

I had that agenda, and I had a game plan of negotiations. if I am taking Diclofenac for pain, why paracetamol too ? One can stop ?

Why blood clotting injection ? Is there dispersive form of the antibiotic medicine that I can mix with the RT Feed instead of going IV  or IM ?

Well with all the questioning, doctors started changing over all the medicines to dispersive tablets going through with liquid food rather than the IV line by Monday. Now the IV line is disconnected through the day, and gets connected back during night just for continuity while sleeping.

Ooze tube comes out on Tuesday, exact a week after the surgery. Felt like free man. Just the nose tube for feeding.

Walking around, talking briefly ! Using laptop to pay bills online, order stationary for kids school work online to be delivered home. Browsing e-mails. Occasionally chatting with friends on instant messaging.  A lot got added with free hands and increased mobility and reduced number of tubes.

There was no reason, for me to hang in there in the hospital. I successfully negotiated myself out of there by Wednesday, 8th post op day, a full 3 days ahead of schedule.

Of course, the entire Wednesday went in doing the discharge formalities with insurance company and all. I was irritated, and my wife was superbly irritated with me because I was irritated.  She gave me piece of her mind, and asked me to behave.

Wednesday evening, I was home among kids, mom, brother-in-law, neighbors, friends. With a DTH programming, where I can choose some thing to watch. I had recorded a bunch of programs from my phone in the hospital. They were all sitting in the set top box. Kids were being just kids. No idea what is going on. No intention to know too.. they just saw a few bandages on me, and stayed a bit away. Made fun of my RT Pipe as Ganpati. But then, went on with their life, exams etc.

I ve the terrace to walk now. Own bed to sleep. Wife has 24x7 schedule between kids, mom and the recovering husband, but doing that all in own home was definitely a relief.

The flaw in the design

Few days in the ward went smooth. I had started reading "Tao Che Ching" - Lao Zhu philosophy.
Amazingly simple poems. Thoughts that are very consistent with those of Gita or Rajneesh or Sri Sri, or Aurovindo. But the most unique thing I noticed here is, the Master in this literature is referred as "she".

The same routine went till 5th day post OPs. The only thing I had was a great sense of recovery and abundance of time in hand. It was difficult to read any book for long, because of the hanging tube from the nose, obstructing the vision.

TV programming in the hospital was pathetic. Sleep was not coming easy. So, basically music, small talks with wife during the day. Passive participation in my gang of classmates from  Kharagpur camping in the room and talking about everything around us.

When it was looking like a smooth road to recovery, couple of things came back to rock the psyche again.

The 45 lymph nodes that went for Biopsy, 3 of them came back with touch of tumor cells. There was no indication of that in MRI scan. Which means, it was about to spread. And which also means, surgery was just the first phase. Not the first and last.

The second one which rattled my confidence was the new found bug in the surgery, that surfaced once I started having liquid food through the nose tube.

In an otherwise perfect surgery, it seems, doctors had left a live salivary gland, inside the newly formed pocket between the cheek and the planted flap.

And once the gland started smelling the food my attendants were eating, and thought of food, started pumping out saliva that fills the pocket and stretches it. All of a sudden, the satisfaction of 95% symmetry is all gone.

Left cheek becomes as swollen as a tennis ball, hard and extremely painful. The entire focus shifted to the face.

Realized, the post op was not supposed to be so easy after all where the biggest problem I have is "abundance of time". It started being much worse than that.

Abundant time in pain !!

Moving to the ward

After around 36 hours in ICU, the room was a welcome break. Windows to see out, some one from family always stays in.
 
Brother during the night, and wife during the day.

Relatively more degrees of freedom, with the catheter out. I can get down from the bed, sit on a chair. Stand up once in a while.

Put on music on my phone, and dance to some of the tunes, with micro movements of the body and eyes (that's all I could manage). That was pretty amusing to the staff. A man, with several tubes, out of a fresh complex surgery, trying to dance !!!

Talking had become a little less difficult. But my new found love with writing down every thing that comes to my mind, and communicate via the paper was in fashion.

Nurses, doctors looked forward to my long list (of mostly negotiations - "do I need Clexine injections because I am not bed bound now ? I do not have sugar issues, and last 2-3 days its stable, why do I have to go through the prick for the sugar test every day ?") on every visit.

There were pages being written when my wife was around during the afternoons. What I would like to do, when I get well. How it would be a much cleaner life. No life style issues. How, we will re-prioritize simpler pleasures of life, over the societal ones. Punctuated by multiple "I love you" in the written musings.

The hospital front desk, ran out of rough papers.

However, the human brain is really crazy. Before I thanked my luck enough for being out of the ICU earlier than planned, and moving in to my own private room with a TV, AC and window view and attendant bed, I found myself missing the right channels on the TV. It was lousy cable service, not that I ever watch TV.

As the legs started moving, and I could walk, I was missing home now. The expectations of getting to do the actions I have always done, ran ahead of that of doctors. That started causing some of the stress building up. But I knew, I was being irrational.

I started enjoying the small walks in the hospital corridor with the physiotherapist. Long afternoons with wife. Pages of writing down for basic communication. And I dreaded the TV and the ill placed AC duct right on the head of the patient bed.
The continuously leaking toilet that made enough noise of water leakage through out the day and night to keep me awake.

I followed up in each of these complains, and the hospital took actions on many of these. Plumber, with multiple tries fixed the toilet. The hospital provided a standing fan, in case the AC made the room too cold. TV, I just stopped using and started depending more on FM radio and music on my phone.

Some visitors on the first day of moving in to the ward too. My ex-boss and mentor and my direct staff. My friends and classmates. They would all come, sit there and talk among themselves for hours.

I would not be able to participate, but was intense listener. A very rare phenomena. This provided much needed distraction to the head and amicable environment for the mind to start healing.

I got on to company instant messaging on phone and even e-mails once in a while.

The only trouble was during the night I did not get any sleep at all. With all the tubes and needdles in the body, and a worked up head, no sleep at all. This started being the top-of-the stack issue.

I begged the doctor to give me some sleeping pill for a day or two for me to rest. And they obliged and prescribed for 3 days.

I am sure I would have slept that night, even if the nurse had forgotten to give me the anti-anxiety sleeping pill, along with rest of the medication :)

Time in Intensive Care

I understood that I need to be under observation for 48 hours. For all my vital signs, blood sugar, BP, heart rate, blood count, ooze output, urine output, medicine intake.

And going through anesthetic induced deep sleep during the day, threw me in to a jet lag of unique kind.

My nights sleep was gone. There was a big wall clock in my line of sight. I would constantly look at it. And then doze off, some time that would feel like a long, sound sleep - but when I open my eyes, I would see the minute hand has moved less than 15 degrees.

A series of that sound dozes, endless ! Used the time staying awake making friends with nurses in the ICU, on night duty. I was the only patient (may be one more was there but in deep sleep), awake through the night - making eye contacts, smiling, cheering them on their video game scores, while they want to keep awake. Negotiating, the location of the prick when they come to inject me medicine. Voice was feeble, a few words I could utter without a lot of pain, but then I thought let me write these down.

I evaluated condition of my right hand which had only the IV line on it. Asked for a piece of paper, and a pen from the nurse. The I just started writing everything I wanted to talk.

The nurses would read, laugh at some of my humor, and respond back verbally. The game went on around plenty of non-sense for the entire night. I understood all the drugs being administered to me. Frequency, name and function.

I used the same technique to collect all my queries, more of negotiations, for the doctor who would come to visit in the morning.

Wrote down a page of queries !! This would end up being a pattern for next few days, until I could talk to an extend.

The ICU stay was ordered for 2 to 3 days, but I was declared fit and stable in one and half day. There was a young physiotherapist who used to come twice and make me sit straight, do some breathing exercise. And being able to sit the day after surgery, in doctors terms were "tremendous improvement". Wife and brother visited me twice or thrice during my stay in ICU. In fact stayed there for an hour, against the norms.

Few key things, I learned through these one and half days ! When a lots of different parts of the body are in pain, its tough to say which one hurts most. In fact, the doctor would ask, "any major pain ?" I would smile and say "NO". And secondly, good handwriting is a necessity  :)

My key, negotiation with the doctor was to get me off the catheter, the tube I hated most. Its painful in a strange way and it pulls the wrong part, if I move even an inch.

 I tried to convince him, that I can pee on my own, in a bed pan ?? :) It was certainly tougher than other multi million dollar negotiations I have done earlier. Finally on the second post op day, the doctor caves in and takes off that tube. As a bonus he takes off the stitch from the tongue too !!

And ordered the staff to shift me to the private room. A small win !

Waking up !!

Few masked faces on top of me.. shaking my body and asking to "wake up ! Mr. Kar your surgery is over !!"

Its one of the strangest experiences to get out of the deep slumber caused by anesthetics. The entire body trembles, chill runs through each part ! I can see nurses dumping couple of blankets on me.

I am desperately trying to say something, but voice is not coming out clearly. Tons of masked faces looking at me.. while the chill subsides finally. And brain comes to a state where I can notice my state of being.

First thing, I notice, not a single part is free. All parts are connected to something. I am out of the OT and in Intensive Care Unit. There is a catheter, there is IV line, there are oozing tubes from neck, ECG and other monitoring wires connected to chest.

I could mumble doctors talking, how the surgery went super smooth and the facial symmetry is 98% back. I tried to feel my face, and could only a half of it.

Surprisingly, I could move my tongue a bit, trying to swallow something and make a bit of noise, but realized there is a tube through my throat, through my nose, which will be used for feeding me as the mouth has been worked up on. Damn ! Even that is not free ?

There was absolute Zero degree of freedom. Wait !! Not yet.. a doctor walks in with a syringe and a fishing pin and thread, asks me to open my mouth. I did !

He gives a small injection on my tongue tip to numb it (here is a point where you do not know what hurts more), puts a stitch on the tongue and leaves a 6 cm long loose thread outside of mouth, calmly explaining "During this phase of post - op, there is a chance of tongue reversing, when the patient is groggy. We would not like that !"  Fantastic - make sure a thread is stitched to tongue and falling outside the mouth for some one to keep pulling !!

Now, that is the Zero degree of freedom. Nothing moves ! Wanted to raise my hand to signal someone, and realized left hand is immobilized with a cast, to protect the wrist where the flap is taken from.

Zero degree of freedom until I figured, I can talk, greet, ask using just my eyes. I sprang back to my positive self, and greeted each one around the table in ICU with "How are you ? " Smile plus the eyes. I am amongst people now. I like it that way.

Doctors gave a run down of events and high lights of the surgery.

- No  blood was needed (even through it was organized and kept), because my Himoglobin was quite good.

- 4 teeth from upper left jaw are gone during the surgery. Nothing that impacts my smile :)

- I was constantly talking during the surgery (what did I say ? ::)

- 45 lymph nodes have been removed as a safety measure. All of them sent for further Biopsy.

The new flap inside my mouth feels like my own dead skin in my mouth. Horrible taste. Doc starts bottle of dextrose through the IV line, to make sure the foreign flap, that has been precision stitched to cheek blood vessels,  wall to wall, stays well hydrated for 48 hrs so that it is accepted by my mouth.

I finally see my brother and my wife coming in to ICU. Felt really good. I smiled through eyes. They assured me that my face is ok, by taking a pic in phone and showing it back to me.

Surgery is done, now starts the recovery. A long, painful process. I find my mind surprisingly fresh and positive and ready to go through.

The body was mostly in agreement, but how would I know ??

The Surgery

Every bit of nitty gritty deatils of the surgery was explained to me. With all the fine prints, that I hoped I did not hear too.

There will be a panel of doctors. A head-and-neck oncologist will lead the show, 2 maxilla-facial surgeons, 1 plastic surgeon and specifically for anesthesia.

The procedure would take 6 hours. Start around 1PM in the afternoon on 11March (Monday) and go till 7 or 8 PM in the evening.

Once the anesthesia kicks in, a cut would be made starting the middle of my lower lip, down the chin, up to near the throat, and then taking a left turn and going up along the neck line till the left ear.

At that point, the entire left cheek and neck will be flapped open, so that surgeons have direct access to the areas of operation.

The tumors had not touched the skin or jaw bone, but surgeons need to take 1 cm extra margin around the cancerous zone (which is 2 cm by 1 cm in size), if a few teeth or a portion if jaw comes in the way of margin, that goes. No mercy !! No taking chance. Clinically all the lymph nodes were fine, however, the oncologist does want to take as many lymph nodes as possible. The link for any thing cancerous to travel to rest of the body.

Once it is all cut out, a portion of flesh from my left wrist to be  taken out, to be patched in side the cheek,  stitched blood vessel to blood vessel in perfect alignment so that it stays and be part of the cheek, than dropping dead in 2 days as a foreign body ! The hole made in the left wrist would then be grafted with a patch of skin scraped from my right thigh.

Now, the process is more complex because the neck region holds most of the nerves that control your eye lids, lips movement, wrist area is also full of critical vessels and nerves. 

Amounts really a major procedure. It would all happen when I go to La La land with the Nitrox Oxide gas, a bunch of tubes to sustain me, like catheter , food pipe, oxygen pipe, organ simulators etc. would get attached, and the procedure would being. I would not know any of it... but could still see vividly with the level of description and picturization that was done to me by the panel.

I was advised to be admitted to the hospital a day earlier, however I negotiated the same morning as surgery and they were ok, looking at my health overall which was Pink OK, and spirit which was Peak High !

So got in to the small, private hospital around 9:30AM in the morning. A room was booked. My brother was with me. I was walking around, a junior doctor walked in and asked, "who is the patient ?". I smiled and said, its me. She could not believe.

Some basic stats like weight, height, creating an IV on right hand, starting with anti-biotics etc started. However, the realization did not dawn in, until I was stripped naked, my entire chest and thigh were shaved by a hospital barber and then made to wear a back open hospital gown.

That's when it sunk in ! Its about to start. By this time, I am very comfortable with the sisters and doctors around. Having nice small chats with them.

The panel arrived around 12:30P, and I was wheeled in to the OT. Saw the entire panel of surgeons together for the first time inside the OT. All are having small chats. I remember the gas mask getting ready to knock me out. My last few words before I lost my sense were - "You guys are the best in your fields. However, advanced congratulations to you because you will all see your best work this evening". I heard the chuckle at the spirit :) And that was the last bit I remember !!!

The collage of pre-surgery feelings

The external disposition of thoughts, the outward cool at work, the usual PJs, the stern assertive way of guiding the team or simply the friendly chit-chat with old pals - all were status quo, as much as they could be.

Last day at work before Surgery, at the women's day celebration I find my self pictured among the spirited and smart women of my team.

The team meetings, were as they used to be. Well ! The spirit was never damp. But was it all right ?

I think not - it was a crazy week, where almost every one I was interacting with knew that I am carrying cancerous cells in my neck, but they were also seeing the same, high energy me, unhindered by the dreaded tumors.

This collision of hot and cold, real and the act, created a collage of feelings in the head. Some in mine and I am sure some in others well wishers around me. I am going to document some of those feelings here, as much as I can ---

Humility - I was secretly boasting about not having to take a single sick leave in many years. Never a simple cough / cold, no down time, no viral infection. Nothing. Now, look at me. I am pre-taking sick leaves, all I ve accumulated to take care of my illness ???? I used to mockingly, yet sternly tell youngsters to be active, play some sports, stay fit !! Well, I used to do those .. did not I ? This humility brings in some of the fringe compassion that was missing other wise. Yeah - not all of them taking a sick leave, just want to get a free day from work. Some of them, may be really needing that rest day !!!  Change of prospective.

Understanding - Women go through pain, as much if not more than the surgery being planned, for child birth, a very natural process and socially necessary in many cases too. Same cuts, wounds, IV Lines, discomfort, leave from work and much more additional responsibility at the end of it.

Fear - fear of losing the team, the charter, the career. The lil monster in the ear keeps telling me, the moment I am out for 6-8 weeks from action, other opportunistic people around will try to get what is built over years of time. It will break down to simple extended working community model ? Will the strongest engineering team disect in to few and get distributed  ?

Fear of kids not doing well in the final exams because of the timing of the chaos. No real attention is being paid to the kids education for a few weeks now, and wont happen through the duration of hospitalization. They will be on their own.

Appreciation - A deep sense of that towards the people taken granted for all along. Wife, rest of the family. Close colleagues.

Hope - When it is all over, an optimal view of future, where a person is much more careful about his / her health. More watching what goes in to the system. More careful about the healthy balance of food, exercise and stress level.

Desires - All form of material desires take a complete back seat. I am thinking, why the heck I was booking the second house any way ? Is there even a need ? Desires are more basic now. More time to kids. More time to health. More time to build stronger character in self and others around me.

Short term plan -  I have plans to write 3 poems, pending for a while in some corner of my head as pure floating thoughts. Read a few books. And yes.. watch TV, something I absolutely detest !

Many more such thoughts and feelings. Most of them, optimistic in nature. Very few depressing ones, more of floating types.

Working till the Friday before the Monday surgery was a boon. Being among the familiar has helped me conserve  the positive energy that I am sure I would need on the cutting board !!

Support Structure

Getting closer to the day of surgery, needed all the support to be in place.
At work, most of the approval burden given out to ex-boss and mentor.

At home, brother and mom both flew in. Brother will stay for a week and following that one more week brother in law will be there. All that is planned. Hoped to get back home before the two weeks of support planned.

However, what really surprised me is, the sheer number of well wishers I have. I sent out one e-mail for blood donation, and dozens of calls and e-mails came back flooding in. In fact, Bhaskar, most prolific volunteer in my group, organized 3 units of packed cell B+ a day before the surgery and had it stacked in the hospital.

My super-boss from USA, gives me open offer to come to USA to avail best of treatment ! 

Neighbors, friends, colleagues, all extended helping hands. The pure number of people volunteering with their time, heart and intent, was astounding.

Neighbor came forward to help with the kids during the half-school-day exam season. 

Makes one feel cared for ! I think, that's the base of building the sound pyramid of positivity, that sails one through these dark days of uncertainty.

I requested all of them to have a private treatment and wanted few people to visit me in the hospital, which going ahead no one, apart from a select group, obey.

The thing that has never failed me in my work space, "Be transparent, no matter how tough the message is", worked once again. Unlike a lot other people, who hide the medical conditions, I was very transparent about it with my entire eco-system.

However, the two real pillars of strength turn out to be my brother, who is a doctor and my wife.
Brothers presence gave me a lot more confidence in the procedure I was going through. It was a second opinion and a final opinion. It helped me be confident of the team of doctors doing the job.

On the other hand, my wife, whose one drop of tear could have broken my bridge of positivity, held it like a lioness. She was absolutely normal through the process of diagnosis, planning and beyond.

She devoted her entire time making sure, kids get the same level of attention they used to get. We have the same level of relationship, cheer in life that we had before this piece of report came in.
Absolutely no negative thought, or look or body language. Supreme confidence, unassailed optimism and relentless working the chores and the family.

Blessed to have such wonderful support structure. So light ! There was no cloud over any one's head. The living room was not quiet. Every one was joking, playing, eating good stuff, drinking tea. Absolutely no evidence of an elephant in the living room ! Even the friends who came to visit after getting the news, were treated with smile, light hearted conversation and tea.

For a person, who is feeling 100% physically before going in to the surgery, this provided the 100% feeling in mind. Both mind and body were super fit leading in to the surgery.

Planning

The obvious question in the mind was - "What is next ?" ! Diagnosis is done. Family  knows.
Boss knows.

The first thought that comes to head ( its a long drive alone, from Apollo to my home in the evening hours) -

 "Very rarely one gets such predefined amount of time and warning to plan one's future. Life is not usually this kind. Any event that has to happen, it would just happen. And the people  will have to go through what they have to".

This is certainly positive, that this event gives you a written report with the extend of the eminently treatable condition, and offers you time to plan the plan A and the plan B.

Multiple thoughts scramble in the head. One week before the surgery and treatment starts. And many things could be cleaner.

The Pent House Booking, partial payment is done, a lot more has to be done.

 Wife has not used her ATM card yet ? She does not even know where is her ATM card and what is the PIN ?

 Re-orgs at the job ?? Have been in mind for a while. But can they wait for ever, or will it create un-necessary spread out interface points when I am not in the picture ?

Not sure if all the investments have nominations filled up correctly ? 

Consolidated information about insurances, investments ? Someone has to know. So far wife had paid no attention to these things !!!

Need to get my brother over. I need support during surgery. 

How many people I know closely can persuade to get off tobacco as soon as possible ?

These were part of many questions, which fell in the bucket of Plan B. Without wait, started calling the right people. A close friend worked with the builder the cancel the pent house booking and in-fact even collect back the hefty sum already paid. Wealth manager came with all investment information consolidation and nomination closure forms. I found the ATM card for wife, took her to an ATM and asked her to withdraw money herself. And that was a moment, she cried. She did accuse me of thinking too negatively. My clam, cool way to explain that this is just planning for the worst while continuing to hope for the best, was of not much use.


Called a staff meeting. Pre-poned some of the organization ordering, which was already known and communicated by about 1 or 2 quarters. Set proxy for all business processes.

What about Plan A - The treatment ? The panel of right doctors ? The right hospital to have the surgery ?

That one I left to the ever-so-powerful intuition, the feeling of the surgeon's smooth stroke during Biopsy. And the doc came with the right oncologist, the right plastic surgeon, the right anesthesiologist, the right hospital - overall the right team !

Just when life warned me, "There is nothing that you plan. A moment can change it all", I had my sense of gratification for being able to "plan" it all !!!