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part eccentric ... part fun .... stubborn .. but not stuck up ... very open to different views, ideas and possibilities ... varied interests ... engineer ... mba ... trying-to-be-a-good-entrepreneur ... ex-software ... ex-quality ... ex-tobacco ... ex-alcohol ... trying-to-be-ex-cancer
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Wednesday, January 31, 2007

Energy Crisis

As i read more about my own disease, things are becoming clearer. I have discovered that my general disinterest and lack of enthusiasm of the last few months could have been due to fatigue that is caused by the disease...

This has taken a load off ...i had begun to think that i had lost it...that my self-motivation and drive had deserted me for good... Now i can happily blame all the lazy postponements to Fatigue ....how convenient....Great

But on second thoughts...its not very convenient... i have had the fatigued feeling through most of today...so much so that i did not even feel like writing something interesting for the blog.

The only bright spot was a long call from my dear friend "uncle". After that i was charged up for half an hour. I went exercising by walking fast laps around the ward and by going up and down stairs.

That was a temp high.. I am back into today's energy crisis. So i am gonna sign off for the day ...will catch up with you guys tomorrow....

Monday, January 29, 2007

Jaws - Acne attack

Its been 12 days since I started on chemo. All this while I have been living in a room in the oncology/hematology ward. The ward has interesting rooms- a few of them have air filtration systems, few of them have "No Visitors" sign and at one end we have a marrow transplant room with quarantine area.

The patients are also interesting. They come from varied places- all corners of India, Bangladesh and there was an Afghan patient in the room next to mine. All of them look frail and weak, some have no hair and most wear a mask when they step out of their rooms.

I seem to be the odd one in this setting. I look fit(at least from outside), have hair (it will take a couple more weeks for the hair to go)and don't wear a mask (immunity hasn't come down yet).

This was making me feel like an impostor, a fraud, a non-serious patient- loafing around in a very serious ward.

All this feeling of guilt was washed away the moment first indications of being "on-chemo" showed up.

The first culprit was "Prednisone" (a synthetic glucocorticoid hormone). It is a daily oral medication and has been made me over-energetic and constantly hungry. Three days back it threw up some acne on my chest. By the time the doctors gave me an ointment,the acne had invaded my back too. Docs tell me that acne is a side effect i have to bear, that the ointment will give some relief, and that the acne will increase with time. Currently, the worst chest acne have become big and a couple have almost turned purple in colour.Thankfully the acne on the back have responded well to the ointment and are not causing much trouble. As a result of all the acne I have started bathing twice a day (which might come as a big surprise to many of you)

The other guilt reliever came with "Vincristine" (an anti-miotic agent), which was given in the second chemo. Vincristine has made my jaw muscle act funny- my first couple of bites (into anything even mildly hard) hurt, things get normal after the initial few bites. So now, i do a few dry run of biting and warm up my jaws before i sink my teeth into anything. This reminds me of ragging days at RECW- After a good round of thrashing and slaps the jaw muscles used to become so sore that we just couldn't chew on our food.

Now that i have had the initiation rituals and feel a part of the hematology ward, I wish that other membership prerequisites, of this exclusive club, are not too hard on me.

Saturday, January 27, 2007

Chemo 2 - The anticipation story

Sometimes, and this always happens when you are expecting to be miserable, the anticipation is more nerve-wracking than the actual ordeal. One tends to worry mountains for a mole-hill size problem.

My second chemo is a good example. The dose was slated for Friday 26th of Jan...needless to say i was all worked up much before that. By Thursday evening i was all over the Internet- searching for more info on Methotrexate and Vincristine, the two chemo drugs. The net threw up some discouraging findings - between the two they can cause all possible complications in life, everything from skin rashes to death is a known side effect of these drugs. Being a smart manager, i reduced the problems to just 2 - managing nausea and Gastro-intestinal ulcers. Then began the story of Anticipation

Actually I have been steadily preparing myself for the chemo. I have already put myself on frequent small diets and have began drinking water frequently....on Thursday i moved into fifth gear, by evening i was drinking like fish.

Night came slowly and along came unending thoughts about the chemo. I got so anxious that I couldn't sleep. Some coughing came to my rescue, the nurse gave me some Benadryl (remember that potent intoxicating cough syrup of college days). One thirty was late time to go to sleep, but that was when i got the Benadryl and went into deep slumber.

Late to bed, late to rise. The nurse woke me at 6 and then again at 7 and asked me to get ready. I took a bath, had breakfast and then lay down on the bed, ready to start the drip, waiting for the chemo nurse. The chemo nurse didn't show up for a long time, it seems staff strength was low on republic day and I had to wait my turn. Every half an hour my ward nurse would come with reassuring words, telling me how the chemo nurse was just on her way. Obviously, chemo nurse had better things to do than putting me on Methotrexate. Being a patient (no puns here) guy i waited and waited.

Finally the chemo nurse did show up at 1 at noon. She tried to set up a line (needle with valves at one end, IV lines are attached to the valves at the end of this needle) , first attempt failed. She poked my hand again; finally a sound line was established. Establishing a sound line is extremely important. If, by mistake, the chemical goes into anything other than the blood vessel it can cause severe burns and pain.

Vincristine was given as a direct injection to the line. That got over in two minutes. Next I was given Methotrexate. It kept running down the IV for five long hours. I kept waiting for the drip to get over and nausea to show up. I was tethered to my bed by the IV lines and could not run to the loo to puke..so i kept a tub next to my bed for puking.

Five hours were past..Methotrexate got over, i was put on dextrose (hindi mey, glucose laga diya)...... the nausea never showed up...lucky me

I started feeling gifted....told the doctor...maybe my body type does not nauseate. He gave the knockout punch "nausea and GI ulcerations can strike on the second, third day or even later".

So here I am ...doing fine...and in perpetual anticipation of nausea....

Friday, January 26, 2007

Single handed post

Just finished my second chemo. no immediate reactions or complications. Spent most of the 5 hours reading Lance Armstrong's story. A drip line is still running dextrose on my left hand, so typing with only one hand. Will give you guys a detailed account tomorrow when the drip is removed.

Bottom line is that things are going fine.

Tuesday, January 23, 2007

Chemo 1 - Patient Report

Last Friday I started off with my chemo-therapy. This was the first dose in line of twelve weekly chemo-therapy doses that (I hope) will get rid of my tumor. The combination of my drugs goes by the fancy name of MACOP-B, It will be further spiced up with 4 doses of the wonder-drug Rituximab.

A nice guy by the name Tarun Jaboc (he is a doctor here at Vellore) has already taken the pains of writing about these chemo drugs. All the curious minded people can read more about my drugs at Tarun's blog article on MACOP-B

I always had a glamorous image of chemo. I used to think that there are special operation- theater-like-rooms, with strange contraptions, in which chemo patients are strapped on to a futuristic machine and given treatment. Actually chemo is not all that hi-fi. It’s given on an intra-venous (IV) line, much like glucose and saline. You lie down on a bed and the chemicals flow into you from a simple humble IV line. That’s all.

The interesting parts are the horror stories associated with chemo-therapy: - stories of nausea, vomiting, body rashes, blisters and ulcers and shitting pain. Thankfully I did not have anything more than mild nausea on my first chemo. But then, it was a mild chemo and my body hasn't weakened that much, at least not as yet. There still are harsher chemicals to come and I am not getting any stronger. So, in future, I might just have some interesting chemo side-effect stories to tell.

When we were young, elders used the bogey of "Scary-Baba" to keep us off mischief. “..stay at home, don't take things from strangers, don't walk down empty alleys ...Scary-Baba might catch you...”
The side-effects of treatment are the new Scary-Babas, prowling the side-alleys of the unknown road called chemo-therapy. I just hope that if and when the Scary-Baba catches me, the doctors will be right behind to save me.

Staging Lymphoma

(writen on 15 Jan for the benifit of those who have just discovered that they have lymphoma)
Here’s what happens once a pathologist declares that you have lymphoma.

1) You begin shortlisting of possible hospitals to get treated from. This takes the form of frantic calls to all friends/known doctors/friends who know doctors. Your aim is to shortlist the best place for further workup and treatment. If you are lucky (like me) you will get an inside picture of many oncology departments/hospitals (they are all bad…some are less so….most doctors don’t have faith in their current hospitals…so if some doctor has good words to say about a facility in which he has worked in the past, you better give that facility some serious consideration)
2) You get a chest-abdomen contrast CT Scan done. This is an easy procedure. One is first given a liter of a metallic drink, which one has to drink in an hour. Then one is strapped in a CT – Scanner (A large and thick hoopla ring with a stretcher in the centre). One is also put on a drip (needle with butterfly shaped back, connected to some line of fluid- called iv contrast) . Then the stretcher is taken thru the hoopla ring a couple of times and you are done with the procedure. The scan tells you about all those lymph nodes which are involved in your lymphoma.
3) You also get a bone-marrow biopsy. This is to ensure that the lymphoma has not spread to your bone marrows. In this procedure, one is made to lie on ones side and a local anesthetic is given to one edge of the hip bone. Then a large needle is poked into the bone to extract some marrow. Despite the local anesthetic the procedure hurts, though just for that moment and not latter.
4) A lot of blood tests are done to find out some vital parameters

Then the doctors sit together, with all reports (including those reporting specially stained slides done by a pathologist) to find out the type, location, size, spread and stage of your lymphoma. Once staging is done further course of treatment is decided. Treatment could be either chemo-therapy or radio-therapy.In my case i might end up getting both

Monday, January 22, 2007

Always ask – So how can we be sure of this Doc?

(written on 15 jan)
Most of us non-doctors know nothing about disease and its treatment. This makes us totally and inescapably dependant on our doctors. Whenever we begin sneezing, coughing, running high fever, seeing two at a time or shitting rocks …we just run to the docs and unconditionally surrender our body and purses to them. Thereafter, we religiously take the pill, apply the ointment, exercise the joint, massage the muscle and restrict the diet as prescribed by the doctor. We then hope that, in return of our blind faith, the doc will deliver us from our suffering and heal our wounds….


Personal experience has shown that unless prodded with intelligent questions, the docs tend to be complacent and prone to making mistakes …..This puts your life and limb to danger

I have a lymphoma…so do quite a few other people I know about. One thing common amongst us all, apart from having lymphoma, is that our doctors began our treatment by assuming that we had TB. The TB diagnosis invariably began on a hunch and was never based on evidence. Thus, in almost all cases, precious time was lost before the lymphoma could be diagnosed. This time is the difference between life and death for a scaringly large portion of people. If the doctor had bothered to get the right set of tests and biopsies done, without wasting time, the lymphoma would have been discovered much earlier and would have been far easier to treat.

So why don’t the doctors diagnose the lymphomas earlier? Or for that matter why do doctors start most of their treatment without solid proof pointing to the cause or nature of illness
…..Because its easy, takes less time, is less costly for the patient
…..But mostly because the patient never asks him smart questions like….On what basis are you calling this a TB?… What is the proof that it not something else?

For a doctor each patient is just another case in a day full of many cases. It is upon the patients to keep the docs alert and on their wits ends by asking them insightful questions.

And my recommended question to ask your doctor-

So how can we be sure of this doc????

Friday, January 12, 2007

Things close to My Heart

There are a few things that are extremely close to my heart. So close that some of them completely overshadow my heart in X-ray films and CT scans. They are called lymph nodes, and they have gone berserk. My lymph nodes have been multiplying at such a great rate that i have a 14 X 10 X 8 CM mass instead of the pea-size nodes that normal people have.

This condition of the Lymph is called a lymphoma ( a kind of cancer of they lymph). I found out only yesterday that i have a lymphoma in my chest and that it might be in immediate need of attention. Now i am planning to go to CMC Vellore, one of the better medical facilities in India. There, i will get to know the exact nature and spread of my Lymphoma. Also the intensity and course of my treatment will be finalized.

Hopefully, regular chemo-therapy will put me back into good shape. Will keep you guys updated with this challenging and new phase in my life....

Tuesday, January 09, 2007

Short Update

Just underwent a diagnostic thoracoscopic surgery. Looks like I have a tumour, definitive answer in another few days. I'm Unable to type myself so taking help from Juhi. Will keep posting if possible.