Back to square one

Thought I will never have to blog here ever again, I thought the nightmare was over, well! I wished too soon. The nightmare is back in a newer version, this time in lungs. After my liver resection doctors at KCCC had stopped my chemo saying that the cancer may be in remission. Yesterday i did a CT scan (after 3 months) and Dr B said that the lesion in my lungs which was .6mm has now grown to 1.2cm and needs to be resected. I broke down at doctors office, I cant think of yet another surgery, but then it is inevitable, I must undergo knife once again, that would make it surgery no 5 in last one year. Which will be followed by 6 months of chemo. So yeah, I’m done.

Wife hasn’t taken the news well, we were very jolly before the meeting with oncologist then came out all pale faced. She brokedown in the car. I tried to console her, but we both know that this is how far we can get now. Doctor B said that usually colon cancer patients become inoperable after certain time, but I am one of those few cases that have a fighting chance. I have put up a good show so far, I completely quit meat and become vegan, have stopped tea even but looks like my fate isnt in sync with me.

So 8th November is PET scan which will happen at KCCC, I have 15 more days to enjoy with my family before I pack my bags to India once again. I wanted to go yo mangalore this time to my parents becsuse I dont want to burden Shirley aunty anymore, I told them so, she cried and then I agreed to do my surgery in Bombay (if it comes to that, I know it will)

Financially we are not stable right now because we bought a piece of land in Mangalore (hoping that our bad days were behind us) this is going to hurt us bad this time. I am not sure how my company is going to handle this situation this time, they have been kind to me and allowed me to work just half day. I dont know if they are willing to hold on to me forever (till Im gone)

My kid is turning into a handsome boy, too bad I am not going to be around to see him grow and thats what is hurting reallh bad even more than the thought of surgery or pain.

I was squatter, being raised in a village without a toilet we squatted in the open (forest) ewww I know. But that’s poverty, nothing eww about being poor and unable to afford a toilet right?. Then I moved to Kuwait and still squatted until 2003 where I shifted to ‘sitting’. BIG MISTAKE. In 2010 I was diagnosed with colorectal cancer. I will always blame my unhealthy / high sugar / junk food life style but there is more to it, according this video humans were built to squat, and sitting has caused number of ailments like haemorrhoids, colitis and even cancer. Watch it and share it and Don’t forget to squat, it may save your life. 

Update: Why squatting is better

It’s bad, when the fear sets in faith walks out. And faith has been missing for few days now. I am living in constant fear that multiple lesions will appear in my liver, heart, lungs, kidneys and doctor will blame me for not opting for chemotherapy. Have i commited a blunder by chosing this path of treatment? Did I make a mistake that is irreversible? These thoughts stalk my mind, and then I look at my son and feel even miserable because I have unfinished business of raising him. Will I leave him halfway through? I don’t want him to hold my hands, i don’t want him to hug  me and feel comfortable, I don’t want him to miss me when I am gone. But he doesn’t know, he doesn’t understand that I am battling cancer, though he prays to God to heal me and take my “boo-boo” away, but will God listen?

Yesterday, after 3 days of severe constipation, Visited Dr Behbehani at Al Salam. Isn’t it a wonder when half your fears fly away when you see a doctor? Then he ‘examined’ me, ouch! That was really painful, my ass is still hurting fRom proctoscopy, Dr Behbehani has asked me to undergo colonoscopy as he saw some blood.

Well, that’s what happened so far, I am desperately counting days for October 15, so that my cancer markers will be done at KCCC.

In other newa
* completed 17 years in Kuwait on August 10.
* Revived my old blog, been blogging regularly there (completely cut off from my rock blog which is proving to be good)
* Wife has been driving on the ring roads, she’s good and learning fast.
* got myself galaxy s3, this post is blogged from phone.
* company doesnt care about my existence which again is a good thing.
* Been praying regularly (often rather) feel good to be back with God. I know He missed me.

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This has been yet another eventful week, although this one has been a bit calmer than the previous ones. As I blogged earlier after two tensed weeks finally it boiled down to which path of chemotherapy to choose, we have been praying to God to guide us.

So I wrote a mail to Dr Adwait couple of days ago, (since he is the one who originally thought that I needed 12 cycles of chemotherapy after my liver resection) I put it in very simple words that ‘Dr B has now agreed to administer Chemo, but he is still of the opinion that I should wait and watch, please advise’. And he replied the next day in even simpler words saying “Dear Santosh, I would agree with Dr. B under present circumstances. Watch and Wait for now then”

Well, that was the end of this incredibly chaotic chemotherapy ordeal, finally both my oncologists were of the same opinion that I should wait and watch. Now the words ‘WAIT AND WATCH’ are a bit scary, as the next CTscan is scheduled for October 1st, which seems like a long time. Am I confident that it will pass? Yes I am, unlike the previous times now I am imagining myself as an Israelite in Egypt who had to place blood of the lamb on the door so that the plague would Passover, likewise I am placing the blood of the lamb (of God) on my head and walking in confidence that this walk through the valley of the shadow of death is ending.

Though it’s quite difficult to follow the ‘narrow road’ after speeding on the “highway” for the last 5 years, but God has been kind in weaning me and I am glad He found me in the right time. If I make it, I will consider this life as an credit from God and will do everything possible in my strength to give it back (although there is nothing I can give back).

In Other news

  • I have started a Gospel rock blog (as I don’t believe in praising God through pirated/borrowed music) I pray that God will lead me.
  • I am not considering to joining work for a while asMarinamall is filled with secondhand smoke from the shesha shops and I am a bit worried about it.
  • My wife gifted me a Samsung Galaxy S3, ever since my son hardly talks to us, he is 24X7 on the phone playing games.
  • Wife has started driving regularly these days, though she gives minor heart attacks while driving, I am very confident in her that she’s going to be a good driver.

What would be your reaction, if your oncologist told you that there are two treatment paths, but it is up to you to select one?

Dilemma, chaos, uncertainty, confusion, frustration, anger..

These are the few emotions I am undergoing right now.. Wanna know why?

After Dr B disagreed to administer Chemo, I approached Dr Behebehani for third opinion, he assured that I needed chemo and would discuss it with the “Head” of KCCC. (I am highlighting ‘head’ because Dr N at KCCC is highly reputed doctor with over 25years of experience) After much waiting over a week, finally Dr N answered that ‘KCCC would administer chemo.. although expected benefit is questionable

So today morning I met with Dr B,  he said that he had discussed my case with HoD and explained  the situation to us. Told us the pros and cons of Chemotherapy (Treatment plan A) and the pros and cons of ‘Observation’ (Treatment Plan B) and then said ‘it’s your body, since you are one of the few colon cancer cases who has successfully recovered from liver resection, We are not sure how chemotherapy will benefit you, will it kill the cancer cells or will it damage your liver / other vital organs, we don’t know. It’s all a guess, if you ask me I’d say lets  monitor you closely (cancer markers/CT scan) for the next 3 months and then check if the disease has relapsed, if so then we still have 3 more drugs that could help us with the treatment. Choice is yours, as a patient I respect your decision to opt for chemo or not‘.

It felt like after waiting for a week I was back to square one all again …

So what I am suppose to do now? I don’t know, I honestly don’t know, but … I have left it to God, I know God speaks, he spoke loud and clear in my ears that ‘YOU ALL WILL BE GUIDED’ .. but that was in 1993, I have lost and found him several times since then. But this time I want him to speak to me again…. desperately.

Meanwhile I am reading ‘Hope in the face of Cancer‘ by Dr Amy Givler. Amazing book, felt as if I was reading through the pages from my experience throughout this ordeal. If you are a cancer fighter or know someone who is battling cancer, I highly recommend you to read this book. It is very helpful in dealing with the situations that are beyond your understanding, and also renews your spirit to fight cancer and not give up.

Here’s what happened after the last post, KRAS report finally came and I was administered my first doze of Chemotherapy on 20th of June. Finally on 24th of June I  came back to Kuwait to be with my family. Oh Boy Oh Boy! My son has grown so much in last two months, it was like seeing a new person altogether. He definitely missed me so much because for the last two months he has been not going to any malls since my wife doesn’t drive.

Visited Dr B at KCCC only to be shocked that he is of the opinion that I don’t require chemotherapy ‘since I am out of cancer’ . It didn’t make sense to me while all the other doctors have been advising chemotherapy, only Dr B is of the opinion that I do not require chemotherapy. Which means I will have to shuttle from Kuwait to India 11 times which also means our finances will be drained and physically I will be so stressed with all that travelling.

Well, Yesterday I underwent yet another CT scan at Dar Al Shifa Kuwait, and the Result has been good. No cancer detected in any part of my body. And the CEA result is good too. Prior to the liver resection it was 3.08 now its’ 0.99. We visited Dr Abdullah Behbahani at Al Salam Hospital who too was the opinion that I should continue with chemotherapy and has promised that he would speak to someone at KCCC so that my chemo will go on schedule.

Since then we have been praying… YES PRAYING!! I have finally surrendered. I have been holding myself back from God all this time, sometimes questioning, sometime arguing, and sometimes even questioning his existence.  But no more, I changed, I had to change, I couldn’t carry the burden anymore. I have been bitter ever since I was diagnosed with Cancer, I’ve been reckless because I was mighty upset at the fact that I had to leave this life at its prime. May be I needed counselling but when I look back I have not dealt with the situation well. Finally after the liver resection I gave up, I couldn’t hang on to the world anymore for all its glory.  Got rid of my rock blog, got rid of facebook (though pretty much active on twitter) and got rid of all that negative Metal Music that has been affecting my life. Yes it’s a total surrender, no conditions apply.

After watching the events that have unfolded in last two months, I have no reason whatsoever to doubt God now, may be I am a fool to my atheist friends, but it doesn’t matter anymore. I’d rather be a fool for God than be a fool that does not believe in God.

It’s been a month since I have not documented any of the latest developments, reason being i’ve been in and out of hospitals almost every week, also I don’t have access to internet and I hate to blog from my phone. So here’s what happened

I got admitted at the Joy hospital Chembur on 18th of May and on 19th underwent Liver resection and removal of gall bladder. Stayed at the hospital for a week and then was discharged without any complications which I’m told quite common during liver surgery.

Also underwent yet another surgery for chemotherapy port installation as Dr Adwaita Gore insisted that I should undergo chemotherapy for a while.

But then real hell broke lose, I was told by Dr Adwait to give my Samples to one Mr Santosh Ingle at Merck group Mumbai, who in turn gave it to Unique health Care (Reliance Life Sciences)  Parel, who apparently LOST my samples and delayed the result for 9 days and then “miraculously” found the samples and have been delaying my KRAS test for over 18 days now. Funny thing is every time I call the lab the technician one Mr Ramesh keeps pushing time, If I call him in the morning he says I will update you in the evening (which never happens) when I call him in the evening he pushes it to next day, So far out of the 4 blocks that I had given 3 have been turned negative (without cancer cells) and today I will be told if the final block has any cancer cell in it or not (which is very unlikely).

Never in my life i have been this depressed, I can’t imagine that there are people in Medical profession who could hold you for ransom like this, What ever happened to the good will?  In this difficult time I had to visit my ailing mother in Mangalore who recently undergone brain hemmorage surgery and was quite sad to see her son like this.

Now that I am back in Mumbai and about to miss my wife’s birthday which is tomorrow (thanks to Reliance life sciences) I am looking for plan B which is collect my blocks from my CA Colon surgery (which too has no cancer cells it seems according to the Lab in KCC) and send it to SRL Ranbaxy in Andheri, and hope that the KRAS test will be done in time

In other news,

* I quit my rock blog after 2 million hits I just gave up on it, don’t feel like blogging anymore, but I am planning to build something greater than it, which will be dedicated to God.

* Visited the land that I had purchased in Mangalore, Must build a house there and call it ‘Hall of fame’

* Shirley Aunt and Godwin uncle and Sairith have been the same old people they are, my guardian angels, As i have said before there are no words to thank them enough.

* Thank God for some good friends, who are very humble and kind and have been helping every step of the way.

* Thank God for some stupid relatives, life is better now that I have totally distanced them.

More about me once I go back to Kuwait…

Meanwhile Keep the faith… If God can stop Sun from setting for 24 hours (Joshua 10: 12-14) he can do anything … all you have to do is just ask !

So the unthinkable happened on 29th of April, met Dr C at KCC to show the PET scan that was done on 11th, he said it looks like “stage4” and needs surgery to remove segmentV of the liver. Since he is not good at talking to patients and seemed in a hurry to go on vacation said he will transfer my case to some other doctor. My wife by then has panicked and in tears called people from church and came to a decision that I should travel to India to meet Dr Kamran A Khan. Although DR Khan said it could be a false alarm, after getting the second opinion of PET scan at SRL lab at Charni road, said it looked malignant lesion and needed an open surgey as opposed to his previous suggestion that surgery was not required.
After meeting Dr Roy Patankar at Joy Hospital chembur, underwent CT guided biopsy of the liver at SRL and it was confirmed after 3 days that it is malignant lesion and I must undergo surgery.

So Dr Roy asked me to meet Dr Mahesh, one of the top liver surgeons in India who asked me to get admitted on this Friday so that the surgery will take place on Saturday 18th.

So here am I, waiting anxiously to get operated so that I get rid of
this lesion and go back to my wife and kid who are dearly missing me.

This may be my end, but if my Lord blesses me to see more years I promise to dedicate it to him. I know he is watching me.. I ju

I haz a PET scan…

So I underwent PET scan on 5th of April 2012, bit boring procedure where they inject radio-active material and don’t even tell you about ‘NOT TO COME IN CONTACT WITH KIDS’ because you will be emitting radiation. Unfortunately I came home and too a nap with my kid. Seriously my faith in hospitals is diminishing.

On 11th my results were out, there is a lesion in the liver, but it’s tiny, So there I was once again between the devil and the deep blue sea, broke down into pieces, told my wife ‘this ship is sinking’ .. hearing that  she broke down too, I have not seen her cry so bitterly since her father died 5 years ago. Then we took courage, prayed and sent the report to Dr Kamran A Khan (surgeon oncologist aka my guardian angel) who asked if I could travel to India,  So all plans were set for me to reach India by 22nd for some procedure that I had to undergo to contain the spread. But then Dr Khan said, it was not so serious that I should leave my job and fly to India, instead he asked me to send the PET scan CD to him, which I did but he hasn’t replied since. Meanwhile I have an appointment with Dr C here in Kuwait on 29th of April. Not sure what he’s going to say, but I am expecting disaster and ready for it. But what ever happens I will NOT get operated here.

In other news my wife got driving license, she drove half the way to church on Good Friday and then panicked and stopped the car in the middle of the road, which is fine, because I keep nagging her about proper driving since my life (and my kids life) is in her hands. If all goes well, I should teach her how to drive on her own by the year-end (Bucketlist #74)

Nothing much to add other than I have serious problems with incontinence, I know this will never heal, it’s one of the perks of undergoing “ultra low anterior resection”. and the fissure are bloody mothertuckers, but days are good when I avoid meat and follow a strict vegetable diet.

So pray for me, or even thoughts will do, check the video below,

PET Scan and other fears

Little rewind:

Things went totally haywire on Feb 21, I happened to visit the doctor to enrol myself for thrombosis observation, and he saw my condition and asked me to undergo a blood test, and then told me to stop the chemotherapy as my thighs had severe blood clots since my platelets had dropped dangerously. So on Feb 21st I officially ended my 6 cycles of chemotherapy (just short of 5 days of completion)

Since then I have been gaining strength, even taken over the shop management as the store manager (who wanted me to be expelled) is on vacation to visit his first wife in Egypt.

But all is not well, I did a CT scan on 11th of March and the tiny lesion on my liver seems to have grown. So I will be undergoing PET CT scan on 5th of April. I am really tensed about the outcome as Dr Bhavin wants me to undergo surgery if the report shows tumour in my liver. Everyone has been asking me to stay positive and keep my self busy with prayers and positive thoughts, which is exactly I am doing (at times) I want to live, desperately want to live and watch my kid grow up, I have so many unfinished tasks to complete. Physically I am at my best, haven’t felt this sporty in a long time. I am doing regular exercise every morning and keeping my self positive.

Met a woman who was battling colon cancer and is in her last stage, we had a long talk as both of us were waiting for our turn at the doctors office. But I was greatly disturbed after the talk, realizing how a life can end all of a sudden. In the future I should avoid talks at the hospital.

In other news, my kid was beaten badly by his baby sitter for not eating, my wife did confront the nanny and fired her. We asked our part time maid to baby sit my kid, which she agreed and has relived our anxiety to a great extent.

Also my other blog crossed 2 million hits, but somehow i don’t feel like writing there anymore, not sure if it is a writers block or life is finally taking a turn.

Will update this blog once I get to read my PET CT scan results. Meanwhile Keep praying for the sick.