Chemo-14 today.

Today, I have had my 14th dose of Cetuximab as part of my chemotherapy cycles. This dose was due last Friday, but because of low blood counts it was postponed then. (Please see my previous post for more details). Today, the blood counts have improved overall significantly (the white blood cell count increased to 2.94 compared to 1.44 last Friday), which prompted my doctor suggesting me going ahead with the chemotherapy dose.

One of the toughest parts of the chemotherapy doses is to find the right vein to inject the drugs! Since with every chemotherapy session, the vein for that session is rendered useless for at least three weeks, it is a huge challenge to the nursing staff to find a right line! Today, they found a vein on my right hand, but immediately after injecting a few pre-medication injections, the vein has swollen and has become useless! The nurse in-charge has to find another vein on the left hand to go ahead with the session! All this process of finding vein and pricking it with the needle is painful enough to remember for days, because of the pain that remains until next week, when the next dose of chemotherapy will be done!

Today's chemotherapy postponed.

The 14th dose of chemotherapy which was due today, has been postponed to Monday, because of the low white blood cell (WBC) count in my blood :( (The count stands at a miserable 1.44 against the reference range of 4 - 11.) My doctor thus suggested me taking a break of three days before my blood is tested for the WBC count on Monday.

A right amount of WBC count is very critical in the blood in the sense that WBC offers the power to resist the foreign entities (such as bacteria and virus) from entering into the body and fight against them. A low WBC count might in fact make the body susceptible to infections. A couple of weeks back, when the same situation occurred for me, my doctor made me admitted into the hospital for five days injecting Neupogen injection every day to increase the blood counts. Since the constant and frequent use of Neupogen is not recommended, she now asks me to let the body to pick up the WBC count by itself just through its normal mechanism.

I am a bit disappointed today since there will be a break in the chemotherapy protocol which will definitely have a ripple effect on the whole treatment schedule. I hope my counts will improve by Monday and I will have regular doses of chemotherapy again.

Living with Colostomy.

Today afternoon, my reading of the day's newspaper was interrupted by a hurried phone call from one of the Nursing Staff at Bangalore Institute of Oncology (BIO), pleading for my help to another patient who needed a temporary colostomy. The patient was diagnosed, like me, with colo-rectal cancer (CRC) and need a colostomy, but he was not convinced about the treatment option and was negating it word-by-word! So, the concerned Doctor suggested him talking to me so the patient could know, in first-hand, the experiences of the colostomy. I am more glad to help him in his case.

Ever since I was diagnosed with CRC in October, 2008, I was left with unbearable pain in the rectal/anal area while and after passing the stools. This pain aggravated since I had my first chemotherapy dose in Apollo Hospitals, Bangalore in February 2009. I was almost restricted to my bed for nearly five months because of the pain, until June 2009, when I had my temporary colostomy surgery to spare me from the pain. The team of doctors at BIO, who were attending me, suggested me undergo the surgery so I could be relieved of the pain which until then prevented me from even sitting straight on my base!

Basically, temporary colostomy or diversion colostomy is a simple surgical procedure wherein a portion of the transverse colon is brought to the surface of the skin as stoma and the waste (i.e., the feaces or stools) is collected in something called the colostomy pouch. This technique will prevent the normal passage of the stools to pass through the rectum/anus and the passage of stools is diverted midway by making an incision on the colon. The upside of this technique is that it relieves the pain, if any, in the rectum/anal passage since now stools will not pass through that route. The downside, though, is that there might be an element of inconvenience because of the additional maintenance of the colostomy pouch, wherein one needs to empty it regularly or as and when the stools get collected in that. (For more details on the technique, please see Colostomy Surgery. To understand more on the anatomy of the colon, please see Colon (Anatomy) and to know several treatment options for CRC, please see Treatment Options for Colorectal Cancer).

It took almost three complete months for my body to get adjusted to the new waste-disposal system. Nonetheless, the maintenance of the colostomy pouch is a bit cumbersome since replacing the pouch and dressing the stoma needs specialized skills and cannot be done personally. Usually, I would replace the pouch every week, though, there were times when it needed replacement once in three days. It dawned on me over a period of time that the frequency of the replacement depends on several such factors as (a) the quantity of the stools collected in the pouch (b) the frequency of the stools getting collected in the day (c) personal hygiene of the stoma area (d) personal dietary habits such as avoiding gassy and non-vegetarian items. As an aside, each replacement session at the hospital costs me around Rs. 500 (Rs.430 towards the pouch + flange and Rs. 70 for dressing charges)!

Of course, life has been never the same again for me ever since I started living with the colostomy. For example, it is

• completely uncomfortable to wear normal trousers since the pouch will be in the abdomen area and hinders the waist band of my trousers from settling in neatly
• very difficult to turn completely sideways, while sleeping, either on left or right side! If I turn left, the contents of the pouch can be felt very sensibly which is irritating; and if I turn right, the pouch is an obstruction, since the pouch itself lies in the right side!
• absolutely inconvenient to visit friends' or relatives' homes or to attend any gatherings because I cannot dress properly! (Of course, the pouch will be beneath my clothing and is invisible to others)
• binding on me to frequently check for any leakages in the pouch or the flange on which the pouch fits in. This not only makes me self-conscious but also feel low sometimes!

Despite all these, my colostomy relieved me from the unbearable and excruciating pain in the rectum/anal area which is a big relief, and definitely having the colostomy surgery is a decisive moment in my treatment. I am not sure, whether in the final stage of the treatment the colostomy is removed to reconnect the colon back to the rectum/anus or a permanent colostomy is resorted to! Fingers crossed and mind numbed, I wait for the time to unfold the answers for me.

(The picture shows the position and nature of the colostomy pouch on the right side of my abdomen. The red circular shape visible at the top of the pouch is the stoma through which the feces are collected in the pouch. To empty the pouch, it needs to be disengaged with the flange fastened with the white straps, and the fastening clip needs to be opened, and the pouch washed and rinsed thoroughly with some kind of disinfectant-mixed water).

From Green Shoots to Yellow Weeds.

To experience the absolute, one needs to remove the veils that stick to the Absolute. One cannot know the Light until one knows the Darkness. Only once one dispels the darkness, one can see the Light.

I was in my chair in my balcony watching the wonderful winter sunset and the birds returning home chirping with unknown happiness. There was suddenly a vivid cloud showing myself in another world - the world which was wonderful for me until a year ago. I was sauntering in the streets bedecked with green shoots of grass and decorated with beautiful flowers. I walked past smoothly to reach my Lawn Tennis court. After a game with the yellow balls on the green court, I took a simple breather and looked down the road adjacent to the court. Kids were getting into their school bus while parents were waving their hands as a gesture of seeing them off to the school. I could see a few kids exchanging blows inside the bus!

I took a detour with my bike towards the old building full of magazines and used books. Attracted by the strange smell of the dog-eared books and fresh magazines, I stopped to pick up a few that gave me an unusual sensual feeling! Coming home, having breakfast and reaching office, I could see myself touching the cold and dry surfaces of my office cube which are mostly rectangular in shape. My mind slowly got into the work mode thinking on lots of things related to the test module. Connecting several thoughts, distilling the patterns, sharing them with the colleagues, presenting the ideas to the boss, getting into the conferences, understanding the larger perspectives, drilling into the other technologies, my two legs were in hundred boats! All the while, my mind was living in the present and calming down as and when possible.

Post-work, I could see myself calling my parents and sisters as a daily routine getting the news from them and letting them know that I was wonderful. When the Sun really set, I had my sip of my tea with a book in my hand and post-dinner, I could see my day ending with an inexplicable feeling of joy and satisfaction.

Suddenly, the cloud burst into tiny wrappers of smoke. The world has changed since then. It looked as though my tennis, my thoughts, my probing mind, my little joys, all dissolved into that enigma of black hole of time! And I suddenly could see yellow weeds with green shoots withering. Where were those hands which were once soothing touching me? Where was that tiny butterfly which was once flapping its colorful wings across my face with an abundant joy? Where were those pink and purple flowers which were once harbingers of my happy moods?

(The picture in the top was taken in my apartment in late 2007 when I was living my world to its fullest with books, movies, games, work, family and fun. The world turned upside down for a moment and I found myself diagnosed with the disease of Cancer. The picture on the right taken in early October 2009 at Bangalore Institute of Oncology, where I am getting treated for my disease.)

Chemo-13 yesterday.

I had 13th dose of my chemotherapy yesterday even though I have had loose stools draining into my colostomy pouch for the past two days. My doctor indeed suggested me a break from the chemotherapy and I opted to have my regular dose yesterday.

A few highlights:

• My blood counts had tremendously improved over the past one week to 5.49 while the recommended range is between 4 and 8.
• Lot of drowsiness made me sleep for more than half-an-hour in my recliner for the first time in my chemotherapy history! (Of course lots of day-dreams too!)
• The boring day stretched with the delay on part of the nursing team to procure an injection infusion pump :( Two newspapers, The Hindu Business Line and The Economic Times could not save me from this boring waiting time!
• I have seen my doctor dressed in smart casuals for the first time in our meetings! :)

I am still bleary-eyed because of yesterday's treatment. And though I have had enough sleep last night after having a couple of dosas, I woke up at 5 AM (unusual for me given that I usually wake up at 7:30 AM :)) and after that lots of fantasies and day-dreams until 7 AM :)

Cancerous expenses.

When I was first diagnosed with colo-rectal cancer (CRC) in the first week of October 2008, a few people took liberty to place warnings to me as to the bad situations one might get into, one of them including the financial one! Though I had always learned that deadly diseases such as cancer are too expensive to afford, I had never expected that I myself would fall into the trap, within one year, of ever increasing expenses week-by-week like a cancerous growth of the bad cells in the body!

First, with a personal savings corpus of around Rs.6 Lakhs, I started to get treated last October immediately after diagnosis. The first major chunk of expense was that for IMRT aka radiotherapy, which costed me around Rs.1.5 Lakhs. When I added other expenses like staying in Chennai for the treatment and other sundry complementary medical expenses such as standard chemotherapy and associated tests, the total expenses went to Rs.3 Lakhs alone in Chennai.

Later, I took a two-month rest during which I spent another Rs.1 Lakh on medical maintenance expenses, which include an expensive PET CT scan.

I came back to Bangalore in mid-January 2009, and I had to start spending money on a series of expensive tests for further diagnosis. These tests and other procedures started to eat into my savings and once my savings were completely exhausted, I took the medical insurance route provided by my employer (i.e.,IBM). A whole Rs.12 Lakhs was spent on the chemotherapy in Apollo Hospitals, Bangalore, out of which Rs. 10 Lakhs was borne by the insurer and the remaining by my savings again. (My savings had a small traction since I managed to save somehow out of my salary for all those months, even though the living costs in Bangalore put before me severe constraints!)

Then, in what is called the Phase-3 of my expenditure, I had a surgery, which costed my around Rs.1 Lakh and then now the chemotherapy again at the BIO. The chemotherapy protocol at the BIO, unlike that which I had in Apollo, is a weekly session including Cetuximab (weekly dose), Irinotecan (one in three weeks) and Xeloda (once in three weeks). The weekly dose of Cetuximab itself would cost around Rs. 75000 every week (a 100 mg dose costing around Rs.19000)! So, in effect, it costs around Rs.80000 per week of chemotherapy session!

To meet the expenses, I gave a serious thought to all the available options including exercising my ESOPs in IBM, the length of the process though forbid me to taking that route. I finally decided to raise loans from my banker, friends and relatives. And, lo! my debts are now reaching Rs.12 Lakhs and most of my salary component would go in servicing this debt! :( And, a bad news is that my salary account would stop get credited with the salary from December this year! :(

Given that my insurance limit (of Rs.10 Lakhs) for this year already was met, financing the medical expenses is now another major issue that I need to tackle with along with getting well on my health front! (For a glimpse of my expenses, I give below a few figures:

Total expenses until now (from October 2008 to date, including radiotherapy in Chennai, Avastin-based chemotherapy at Apollo Hospitals, Bangalore and the now on-going chemotherapy at BIO): Rs. 32 Lakhs.
Expected expenses for the further treatment: Rs. 8 - 10 Lakhs (including chemotherapy and post-chemo surgery)
Loans : Rs. 11 Lakhs (including a personal loan of Rs.8 Lakhs and the remaining from friends/relatives)
Cash at hand: Rs.2 Lakhs)

Mrityunjaya pooja in my home town.

Last Thursday, in my home town of Kadapa, A.P., we had performed an elaborate pooja added with Homa at our home. The whole series included Chandi Homa, Rudra Homa, Navagraha Shanti, Mrityunjaya Homa, Aruna Homa and Rudra Pooja. The complete ritual started around 9 AM in the morning and ended at around 5:30 PM! Several suggestions from astrologers, including our own family pandit, prompted us to perform this series of poojas.

Earlier, I had started to Kadapa from Bangalore on Monday, October 5th, with my parents, younger sister, and two nephews. I had made sure of a few contacts, in Kadapa, who could do dressing to my colostomy pouch in case it leaked. The weather was so humid and hot in the Kadapa city that I was sweating profusely even in the night! :) It was a good drive of 6 hours from Bangalore and fortunately, the effect of floods was not there in the Kadapa city so we did not have any rains at least which would have otherwise our pooja/homa plans. I returned to Bangalore along with my sister and nephews last Friday and then had my chemotherapy session the next day. (Some pics of the pooja attached with this post.)

Chemo dose 12.

Yesterday, I had 12th dose of Cetuximab for my chemotherapy session. Instead of usual infusion speed of 160 ml/hour, it was administered with a speed of 80 ml/hour! Also, it was a boring day for me since no one accompanied me in the hospital. (My parents stayed back in Kadapa,A.P. (my home town) after a pooja. Details in another post.)

Another week of chemotherapy.

I just have had another week of chemotherapy session today with a 400 mg of Cetuximab. Compared to the earlier weeks, this week has been a relatively quick process with my admission at around 11:30 AM and getting discharged around 3 PM. Usually, the oral report of the blood test will be awaited and the chain of events is something like this on a typical chemotherapy session:

(1) 10:00 AM - Submit blood sample for CBC (Complete Blood Count) to the Laboratory, which is in the 2nd floor of the hospital.

(2) 12:30 PM - One of the sisters takes an oral report of the blood test
(3) 12:45 PM - If the blood counts are good (i.e., within limits prescribed), then admission into a recliner room (Room No.158 in 3rd floor)

(4) 1:30 PM - Chemotherapy drugs, to be administered, will get delivered to the recliner room on my name

(5) 1:45 PM - IV (Intra-venal) infusion of the drugs start

(6) 3:15 PM - Infusion ends and the billing process starts with the attending sister sending the activity card to the Billing Department

(7) 4: 00 PM - Bill gets paid, discharge summary ready and discharge gets complete

Any of the above steps might get delayed due to some unpredictable reasons! (Ahem..Murphy's Law!) But, today, it has been a perfect timed process! An unusual thing to happen usually :D

Visit to my sister's home.

I have just returned after a wonderful and introspective retreat to my sister's home in Chintamani, around 80 kms from Bangalore. I started yesterday to the place and just came back today after a good night's stay there nibbling into some special delicacies of Dasara prepared by my loving younger sister.

I have always had a special bonding with my sister, Gomati, and ever since she attended to me in the hospital last April/May in the absence of my wife, that bonding has become stronger. We used to talk for hours together on topics ranging from the rows of birds returning to their nests in the evening to the more touching family issues and personal lives. She has always been a cool and matured person and the best thing I like her about is her enormous patience in times of adversity; and in the times of happiness and joy, she is even-headed and would take any thing in life as normally as answering to the question, "What is your name?"!

Yesterday night, though I could not talk to her much, the evening saw both of us sharing lots of feelings and thoughts including that on my health and our family. Her equipoise in several matters is awe-inspiring and most of the time, she played the role of a wonderful listener to me. I love her for her slow but empathetic and balanced personality, and probably very few listened to my thoughts and shared my feelings in the recent times, I felt as though I had emptied a whole lot of baggage before her! Relieved as I am now, I am a better person! :) (In the pictures: my father in a pensive mood; the wonderful weather on the way; my sister, Gomati; my nephews, Bipin and Dhanush).