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.

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Wait and Watch for the Angel of death to Passover

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 1^st, 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.

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The choice you make may kill you or not.

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.

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Total surrender, no conditions apply.

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.

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Liver liver on the table …

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 !

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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 21^st 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 11^th of March and the tiny lesion on my liver seems to have grown. So I will be undergoing PET CT scan on 5^th 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.

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Pain, Moon and God

I’m in pain, a lot of it, feels like every inch of my body is beaten badly. But that’s OK I guess, my capepox regimen is in its final cycle. That’s right, surprisingly all my blood reports were normal on 13th of Feb (wherein I was expecting a disaster) So I got my final dose of Oxaliplatin administered which was quite painful for some reason. Went straight to work after the chemo, trust me being a shoe salesman is not easy while undergoing chemotherapy. You encounter jerks (read customers) all the time who are unhappy with you because 1) You look like shit for the next three days and not paying attention to their shitty demands 2) you are not in a mood to do anything yet are helpless but work to earn your daily bread. Anyways, thanks to my good co-worker Jenn somehow I pulled through these 3 days, but unable to sleep because of body ache. Anyways like every bad thing this shall pass.

Got an CT scan coming up on 11th of March, I guess my days will be bad until the results are out only on 28th of March. Must come up with a plan not to get mindfvcked till then.

Lots of developments happening at work place which I will write some other day, nevertheless I have made up my mind to move on. I feel I wasted 9 years of my youth working for this shithole of a company.

Today is my son’s annual day at school, quite stoked about him singing on the stage in a flowery dress.  Hope the day goes well, Hope the bloody winter gets over soon.. Desperately need to feel the sun.

Talking about Sun, here’s a joke that happened the other day

Wife (teaching bible to Jay on our way to Sunday school): God So loved the world he gave his only Son….

Jayden: Mother, who gave the Moon?

😆 😆 😆

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Kicking the Dying

Well, new year and Christmas was fun, had one of the most memorable time of my life, specially watching my boy get grow day by day is fun, God he is so full of life, wish I had another one So that the joy would have been double haha!

Well, while my Chemo got cancelled again for the 4th cycle as my WBC nosedived darn!! But the real shocker was when I discovered that my company is planning to fire me because the store manager has been cooking stories about me to the management (who are located in Dubai and NEVER visit us) It had me stressed out like hell. While my heart was pounding like mad, guess I over stressed myself at work and my WBC and platelets have fallen down to the lowest.

I have lost faith, this is not good. This definitley NOT good.

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Betrayal

There is no greater pain than being betrayed by your own body.so my chemotherapy got cancelled again last week due to low platelets. It was 65 on 7th, 66 on 14th raised by JUST 1count, well that was very depressing, I’ve been very rude this week, I can’t stop profanities in my language. May be I look ok but deeply depressed. As I write this on 21st of December, I am waiting for my blood test results. Writing this from my phone, prayer is what I need, but I seem to be walking in the valley of death and totally lost right now!! God help me please!!

Update: blood result says “platelets 87” that’s still low but good enough to start the 4th cycle. So right now I am here listening to blackie lawless sing “rubber man” from the album dying for the world while oxaliplatin is running through my veins. Also Dr Chokshi has asked me to take 5 injections to increase WBC and platelet counts.

I Just feel good right now, thank you Lord

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50 /50

As warned earlier in one of my previous posts, I have been irregular to update here, since my real life is pretty boring, you wouldn’t wanna know it anyways

 

But if you insist on knowing what happened since Nov 14^th, here’s the flashback

 

Got my CT scan report on the day of my 3^rd cycle started, since Dr Chokshi had already left, I took the liberty to read the report by myself and started to tremble as the word ‘Lymph Nodes’ were written everywhere. Came home and hugged my wife and cried bitterly, but her being the ‘prudent’ wife asked me to send the report to Dr Khan and Dr Gore inIndia. Dr Gore replied after two days saying ‘the reports were normal and nothing to worry about’. Now you wouldn’t wanna know the pain I put myself for being such a jackass.

 

My 4^th Cycle of capefox will start on the 7^th. Since my Store manager already made an issue of being sick to the hierarchy for his own personal gains, I did push my day off to Wednesday instead of Friday and good news is my wife will be accompanying me for the first time. I really don’t want her to come as I usually take a nap at the hospital while they administer Oxaliplatin. But I can use her company I guess.

 

Meanwhile I got a tiny increment at work, I wasn’t expecting one since I have been out of work for the most part of the year, but I am thankful to the company  for being patient with me.

 

Oh ! the lines on my palms are cracking btw. Pretty painful got them taped so that I can work, hope 4^th cycle goes well, this year being the coldest ever, I have terrible problem touching cold things because of the side effects. But hope God is watching and this ordeal ends on a good note

 

Also watch the movie 50 / 50 one of the most heart touching movies that I have seen in recent years.

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