CyberKnife completed

I have had my last dose of radiation through CyberKnife yesterday. (The total dose of radiation recommended was 2400 cGy spread over three days. Gray is the unit of radiation and is defined as one joule of energy absorbed by one kilogram of matter. I had thus received 2400 centi Gray of radiation!)

Though the entire was painless and non-invasive, it was cumbersome not to be moved for almost two hours in each session! A mild movement such as that of fingers and arms is fine, but any medium movement causes the robotic arm of the surgery equipment to stop and proceed which might end up in taking more time for each session! :)

Now that the CyberKnife is complete, I need to meet my team of doctors (radiation oncologists, medical oncologist and a surgical oncologist) tomorrow to discuss on the future plan of the treatment. The discussion might include such issues as the post-radiation medication, the time of the next PET/CT scan to know the response of the tumor to radiation and any thing more. Hope, this radio-surgery might have had a positive impact on my overall health. :)

CyberKnife started

After a few days of hectic consultations and tests, yesterday, I had my first session of radiation under CyberKnife surgery system. The session lasted around two hours and was completely painless, though it was a bit cumbersome not to be much moved during the entire session. (A mild movement during the session forces the robotic arm to stop since it cannot track the tumor!) There were no pre-requisites for the session except to have a Granicip tablet, an hour before the session.

The treatment plan for me was fixed for three days of pointed and focused radiation followed by an observation time of three months. (Yesterday's session was my first day.) Though this radiation-based treatment is somewhat similar to that of the IMRT-based radiation I had last year in Chennai, there are quite a few differences:

• IMRT affects the healthy tissues too, whereas CyberKnife is focused on the malignant tumors only
• IMRT radiation typically last for 4 to 6 weeks, while CyberKnife lasts for only 3 to 5 days
• The side-effects of having IMRT radiation are significant whereas there are minimal or no such side-effects in CyberKnife

I am excited and curious to see what CyberKnife would do to me in terms of the removal of the disease, but to know its effects completely I should wait for a PET/CT scan after three months, because the effects of the radiation would be slow on the tumors unlike those of the chemotherapy!

Planning scan done today - second step towards radiosurgery

I had a limited edition of planning PET/CT scan done today morning. The objective of this scan is to get the images with reference to the fiducials done as part of the first step so that the robotic surgery system could track the tumor's dimensions. Since the disease is now confined to only limited area (liver), the scan was done in a limited area without the usual oral contrast, but with only IV contrast of FDG. (For more details on how the usual PET/CT scan is done, see my earlier post.)

The whole process of scan today lasted around an hour and later my doctor Dr.Kumaraswamy, Radiation Oncologist, told me he would make me informed on the timing and other details of the radiosurgery treatment later today. So, I wait and look forward to the actual radiation sessions! :)

Getting ready for CyberKnife - a radiosurgery process and becoming a golden man!

Yesterday, I met Dr.Ajaikumar, who is the CEO of Health Care Global (HCG), the umbrella organization which owns Bangalore Institute of Oncology (BIO). Dr. Ajaikumar also heads the CyberKnife - the world's first non-invasive, whole-body, robotic radiosurgery system and is designed to treat tumors anywhere in the body with pin-point accuracy. During my meeting with Dr.Ajaikumar, we were accompanied by my Oncologist Dr.Niti Narang, Radiation Oncologist Dr.Kumara Swamy and Senior VP (Marketing) of CyberKnife, Mr.Tanjai Kapoor. The excerpts from our discussion with the experienced team of doctors here:

• since my disease is limited to only liver and a peri-portal lymph node near the liver, the radiosurgery has a higher probability of treating the tumors
• the tumor in the peri-portal lymph node is insignificant in the sense that it is currently less than 5 mm in size and is inactive. So, serious attempt will be made to target that tumor too during the radiosurgery.
  
• liver is one of the soft-tissues in the body and treating the tumors in the liver is a highly-skilled process. Also, since the tumors in the liver move with the respiration, it is more difficult to accurately trace the location of the tumors for any radiation based surgery technique. To do this accurately, hence, the CyberKnife technique involves implanting metallic markers made of gold in the liver so that the robot doing the radiosurgery can track and trace the location of the tumors accurately.
• the entire radiosurgery process may take between 3-5 days and I can be treated as an out-patient. This means that I need not get hospitalized!
• the radiosurgery process is completely painless and may take an hour per session per day.

After some discussion with my father, who came with me, I decided to go ahead for the radiosurgery as the next treatment. We then talked to Mr.Tanjai Kapoor regarding the financial issues of the process. A half-an hour discussion ensued and we were told that the entire treatment would cost us Rs.3.25 lakhs (this is after getting a good 20% discount!), which would include all the related scans and medicines. As a first step of the process, I was asked to get the gold-made metallic markers (called fiducials) implanted in my liver. This is a minor surgical process done under the local anesthesia. Yesterday afternoon, I went through this process of fiducials wherein three needles were used under local anesthesia to implant a total of five gold-metallic pieces in my liver. I suffered breathlessness for almost the entire day later because of this process. :( These markers would help the robotic system to accurately locate the tumors in the liver while treating them. The next step would be a planning scan to be done ten days later. Meanwhile, I was advised to be on a couple of antibiotics (both oral and IV) and on continuation of the oral chemotherapy tablets of Capecetabine. This planning scan would produce the images that would be for the robotic system to pick up and understand the structure and the location of the tumors during the actually surgery. So, finally, I have become now the golden man :) with gold-made metallic implants in my liver now! I trust the team of doctors in BIO for my treatment and I hope I would get the best possible treatment under their supervision! :D I hope with this radiosurgery, despite some suffering and difficulties, I would be free from the disease completely. :D

Signs of recovery

The results of the PET-CT scan are out today and there is really a good news:

• There are no traces of cancer in the body except three lesions in the liver. Out of those three, two are inactive and only one is active! :D
• All the rashes and other side effects like infection in my body are due to the chemotherapy! :)

I met my doctor today with the report and when she broke the news to me, I did not know how to react! Such are the moments! :) However, taking grips on my feelings and emotions, I discussed with my doctor on further plans since there are still some lesions in the liver which need to be cleared out of the body. Only then, I can say, I am completely out of cancer!

After a long and an insightful discussion, my doctor suggested me to undergo a radio surgery on the affected portions of the liver. The surgery option, according to her, is the best because:

• further chemotherapy might not be that effective on the liver lesions because two of them are inactive and might not respond to the chemo drugs
• further chemotherapy might induce more side-effects which might have deleterious effects on the body in the long-term
• a surgical procedure, especially a radiation-based, is relatively a painless process and since the disease is now confined to only liver, it is easy to control it by just working on the affected portions

Now that my doctor had suggested the surgery as the best option in the prevailing situations, I had decided to talk to Dr.Ajay Kumar, who heads the Division for robotized radio surgery in Bangalore Institute of Oncology (BIO). (I got his appointment on Friday@ 9AM.) I hope once the surgery is done, I will be free from the disease and will be on the path of fast recovery and can really hope for glory of success! :)

PS: Here are the scanned copies of the PET-CT scan report for those of you interested to go through them! (You can go through the final impression in the page 3 of the report for the gist of it.)

PET-CT scan today

I have had another PET-CT scan today morning in the Bangalore Institute of Oncology (BIO), which is the only center in Bangalore to have such facility. Given the number of patients lining up for the scan, one needs to always take an appointment at least three or four days prior to the scan day. So, I took the appointment last week (Nov 30), when I had my chemo session.

Today's scan was my seventh in the last one year of my treatment for cancer! Nevertheless, I would like to share with you my experiences of the scan process for a couple of reasons: (a) Most of us might not have heard about what PET part of the scan is, though some of us might already know what CT scan is. (b) I did not share my scan experiences in a public platform such as this blog until now. Thus, I give below more details of the PET-CT scan in the form of FAQs. Hopefully, this might give a few of the readers what a scan process might be! :)

1. What is PET-CT scan? Why should a CT scan be combined with PET scan?
PET is an acronym for Positron Emission Tomography, while CT stands for Computed Tomography. A CT scan usually gives us an idea of the structural changes of the parts/tissues/organs in the body. Thus, CT will give us what is called anatomical imaging. However, CT cannot give us the details of the metabolic activity going on in the specific part/tissue/organ in the body, which can be achieved by PET. Thus, PET will give us what is called functional imaging.
Let us take an example of a cancerous growth in Liver. CT will show the images of the liver with its shape, changes in the size and any other properties such as color, which might be due to the presence of cancer. PET will capture how these cancer tissues or cells are moving or spreading. So, a combination of both PET and CT images of the body not only gives the anatomy and changes in the structure of the part, but also how the part is functioning.

For more technical details on PET-CT scan, interested readers might want to see the following web resources:
(a) PET-CT
(b) Positron Emission Tomography
(c) What is PET-CT scan?

2. Is PET-CT scan the only technique available for effective diagnosis of cancer in the body?
PET-CT scan is the widely used technique world-wide to detect the nature and extent of the cancer in the body. Though there are other kinds of tests used to detect the cancer, such as mammography test (for breast cancer), Pap smear to test (for cervical/uterus cancer), and various others, they only detect the cancer in a specific area of the body. PET-CT scan detects the abnormal activity in any part of the body thus helping an oncologist in effective diagnosis.

3. Is PET-CT scan a painless process?
Yes, the PET-CT scan is mostly a painless process since the actual scan will be performed in a machine where the body is exposed to a painless radiation, similar to that of an X-ray machine.

4. How expensive the scan is?
Given the logistics and investment of the tools and equipment required for the PET-CT scan, it is usually expensive. For instance, BIO charges anywhere between Rs.12000 to Rs.20000, depending on the reference of the doctor and whether you are an internal or external patient. (Of course, one can negotiate always for a discount with the help of your doctor :) )

5. What the process for a typical PET-CT scan is?
The process for a typical PET-CT scan might be as follows:

(a) The patient should be on fasting for at least eight hours before the scan! He can only take water during the fasting period. (In my case, I had my dinner at around 9 PM yesterday and did not have any thing later to that until my scan was complete at 12 noon today.)

(b) The patient when reports to the PET-CT center, is checked for his vitals, such as blood pressure level, sugar level, white blood cell count, weight and height. If any of the first three are abnormal, the scan will not be done on the day and will be rescheduled. (For example, the fasting sugar level should be less than 200 mg/dl i.e., 200 milli grams of glucose per deci liter of the blood.)

(c) An intra-venous (IV) needle will be injected in one of the veins of the patient, usually in one of the hands, which would later carry the radioactive tracer before and during the scan.

(d) The patient is then administered with a small dosage of fluorodeoxyglucose (FDG) through the IV line. (FDG contains the radioactive tracer as fluorine-18, a radioactive isotope of Fluorine, with half-life of around two hours! This tracer is absorbed by the abnormal areas of the body and emit gamma rays, which are captured by the PET-CT machine.)

(e) The patient is quarantined from others since now he carries the radioactive tracer in his blood.

(f) The patient is then asked to have one liter of liquid, usually water, with soluble FDG. This is to ensure that the body will have enough dose of FDG to absorb. The intake of this fluid, also called oral contrast, should be slow and even and should be over a period of 45 minutes to one hour.

(g) The patient is then shifted to the PET-CT machine, where the actual scan of the body will take place. It usually takes 15-20 minutes for the scan to complete. The whole process of scan can take any where between 1.5 - 2 hours.

Once the scan is complete, the patient is advised to be in observation for another couple of minutes before he is let out. (Once he is let out, of course, he is free to break his fast now! :) )

Now that I have had my scan, I am eagerly waiting for its report, which would be available to me tomorrow morning! Hope there are quite positive results in the report and my recovery is complete without any further chemo sessions! :)

Chemo-18 today.

I have had my eighteenth dose of Cetuximab today. This is the last dose as originally recommended by my doctor. Like I did last week, I went to the hospital today with (a) severe pain around the edges of my feet which were split in several areas thus affecting severely my walk and (b) lot of inflammatory abscesses in my face and both the legs which were a major irritation.


A few highlights of today's chemo session:

• Blood counts have only marginally improved with the white blood count going up from 2.44 last week to just 2.85 today! This value still is below the minimum value of the preferred range of 4 - 11. Nonetheless, it was fine for the infusion of the Cetuximab.
• After a couple of trials, the nursing staff found a vein in my right hand.
• My weight has gone down marginally from 89 kg to 87 kg!

Though my doctor Dr.Niti did not visit me, her junior Dr.Smita did so and advised me having a PET scan next Monday (i.e., 30th Nov) and consult Dr.Niti with the scan report. The scan will show the latest status of the disease inside my body and it is the only known way currently to detect cancer in the body. So, I have one more week of rest and one more good thing of not having Capecetabine this week! Phew!

Chemo-17 today.

I have had my seventeenth dose of Cetuximab today. I went to the hospital today with (a) severe pain around the edges of my feet which were split in several areas thus affecting severely my walk and (b) lot of inflammatory abscesses in my face and both the legs which were a major irritation.

A few highlights of today's chemo session:

• Blood counts have again dropped with the white blood count going down from an amazing 8.49 last week to 2.44 today! Though the value of 2.44 does not fall in the recommended range of 4 - 11, it is fine for the infusion of the Cetuximab.
  
• The ordeal of finding a vein in my hands for the infusion of the chemo drug was again back. Finally, after a couple of trials, the nursing staff found a vein in my right forearm.
• My doctor, Dr.Niti Narang, did not visit me today for the simple reason that by the time the intra-venal (IV) infusion had started, it was again already 3 PM and that was the time when my doctor usually completes her duty. However, the assistant doctor Dr.Smita visited me and enquired about my health condition in general. When I told her about the rashes on my face and legs, she told me that these were the side-effects of the chemotherapy, especially, the infusion of the Irinotecan, and were expected. She assured me that they would go away over time.
  
• My weight has improved marginally from 84 kg to 89 kg! Though my father, who accompanied me today, was at discomfort with the abnormal weight, he left a sigh of relief when the doctor and I reassured him that it was a good sign given that chemotherapy is going on now.
  

Redotting the past!

Recently, I was trying to peep into the past and was emboldened by the fact that life has given me enough to rejuvenate and rejoice! Though there were and have been moments of disappointment and distress, the times of happiness and bliss, though ranged for a short-time, were permanently etched in memory and reliving these times would give tremendous re-happiness and re-bliss!


(Photograph on top: Me in 7th standard fresh after the annual public exams; Photographs from right: during B.Tech., 3rd year, 1992, in the lawns of KSRM College of Engineering, Kadapa; at home in the world of books, 1996)

Connections of the heart.

I touched the warm parapet that looked sapped out of the continuous radiation for the day from the scorching Sun. In the western horizon, a large whitish cloud was shielding the Sun despite the heavy metallic rays beaming out from all the angles from the surface of the cloud. The birds of summer fly past the cloud as though they were going to report the happenings in their part of the globe with haste. The routine breeze was absent and missing. There was no movement in the trees and all the branches were as though they were waiting for some mysterious event to happen in the Nature. The buzzing sounds of the vehicles and the people in the not-so-distant road was echoing in my ears like the sound of trumpet echoing in the middle of a deep valley in the coarse hills. The roaring sound of the starting of the unknown train was clearly audible. Two squirrels in the corner of the floor were fighting with their pranks. The squirrels climbed upon a tree with one of them menacingly looking at the other down from the zenith of the tree. The lower one was shouting at the higher one with some sudden movements in its head. The higher one responded with the similar movements in its head turning wide angles in the opposite directions. Suddenly, the lower one took a leap into the top branch and both were still for a moment!

That was a day with a set of mixed feelings on life's different perspectives. Earlier in the day, I had met my doctor with a scan report and she suggested me continuing the chemotherapy for nine more weeks. Though the line of treatment was simple to execute and follow, the enablers of the treatment such as money,family support and my willpower, decide the success of it partly.

As some advertising tag proudly says,'There are a few things beyond money; but they all cost money'. Though money cannot buy everything in this world and beyond, it's role is definitely important when it really matters most. My train of thoughts on that evening meandered through the financial position I was in to take on the challenges of the treatment and my fight against the disease. I was not completely prepared to make it with the expected expenses touching more than Rs.10 lakhs for nine more weeks of treatment! I was thinking of the various options to raise money since for all of us who are single-income sourced humans, working with the cash flows running into lakhs of rupees over just a few weeks is a daring thought!

Sreenivasulu Yaparla aka Seenu called me up incidentally on that night inquiring about my health and general condition of my life. Seenu has been a friend ever since I had come to Bangalore. After a couple of failed attempts at entrepreneurship, he made it into IT and now is into active IT consulting based in Hyderabad. I was swallowing my words when he questioned on my financial preparedness in dealing with the disease and after recognizing my feelings, he offered me having some money to start with the treatment. Had he not offered the money in that moment, the history would have taken a different course. The defining moments in one's life would come totally unexpected, and once they happen, they define the moments!

A few days later, my childhood friend, Raja Reddy, who is now in US called me up with a proposal to help me in my financial needs. His idea was to raise the charity funds in the form of donations for me so I could keep on continuing the treatment. Though I was skeptical about the idea (because I was not sure who the target group was and whether they would really be interested in donating!), I kept on discussing the idea with him for over a couple of days. Meanwhile, I had applied for a personal loan from a bank to supplement my financial needs.

Raja should be thanked a lot on giving me another decisive moment in my life! He worked with one of my engineering classmates, Suri, who had been another active resource and inspiration in making the idea of donations a huge success! They both took the task to their shoulders with a real zeal and fervor that is truly unprecedented! Later, a few of my MBA friends shared my agony and came forward to help me in fight against one of the deadly diseases in this world! I should thank all of them who had given me continuous moral, emotional and financial support!

Every mortal in this world understands the significance of the money in its capacity to satisfy their various needs and provide a cloud of security for their future. Parting the things which you would need for yourself in your life entails big heart and a strong feeling of empathy. That feeling wins which would think of the real feelings of the person receiving the money as a receptor. The heart must beat for the person's situation which coerced him to act as a receptor. The mind should be ready to take a decision and act!

And the donors, both in US and in India, responded; they just did not react! With all the donations trickling in as diverse amounts as $50 to $3000, I felt as though the hearts in this world still do not wither in the tough situations as these. The connections of the heart have been so strong as to overcome all other biases and feelings. All donors who were part of my life now did not just donate money; they shared a part of life with me. They donated minutes of thoughts and feelings to me! They shared some of the finest moments with me, thus helping me in getting tremendous courage and conviction to fight against my disease. More than any thing else, I feel now my heart is connected with all of their hearts! I am beholden to all of you, Donors! Merci, donateurs!

(Despite donations, I am deeply touched by a few heart-warming asides that took place in the process of donation over a period of time. Though they might just sound as events, they definitely would have defined the scope of feelings of the respective donors in their decisions. I give below a few touching and interesting asides in the process of donation:

• Sumana, daughter of Raja Reddy, had decided not to have her regular birthday gift from her dad. Instead, she preferred to donate the money to my cause!
• Ramesh Nagarajan, who had only spent one year with me in my Engineering (he changed his college later), was kind enough to help me through his donation. Given that it has been around sixteen years since I completed my engineering and given that I and Ramesh had not been in contact for all this long, his donation really makes a feeling of a real connection of the hearts!
• Some of the donors do not know me personally or directly. Nevertheless, their donation for my cause shows the greatness of their eloquent kindness and my tributes to it, however high it might be, do not match with the greatness of their hearts!)
  

Given that most of the donors were out of my contact network for more than at least ten years, it has been a great feeling when some of them visited me personally at my home and shared their support for me.

All these events and incidents aroused a new hope in me. A hope, though fragile and frail, that would make me strong enough in my fight against the odds and emerge stronger and smarter with unwavering confidence in myself and in my abilities to take forward all the connections of my heart to new levels.

Post-Chemo-16 effect

Today, I am feeling a bit feverish with rashes spread across my thighs and legs - some of the rashes carry pus, which might be a sign of minor infection! I had called up the doctor today and she had suggested me applying Betnovate ointment for the rashes.

After a long time, I had slept for around two hours in the afternoon! Probably, my body felt strained because of the toxins inside flowing through the blood! I have a feeling of dullness and loss of concentration which made me cancel my reading of business papers of the day. I spent calmly in the evening in the darkness of the room mooning about the good days ahead!

Chemo-16 today.

The recurrent and progressive thought of having a chemotherapy session every week is so powerful that the day before the session would be highly impacted by that thought! Such is the power of the chemotherapy!

I have had my 16th dose of Cetuximab and 6th dose of Irinotecan today as part of this week's chemotherapy. Though the last week is relatively a good one for me, the infusion of the Irinotecan can change the course of the next couple of weeks!

Some of the highlights of this week's session:

• the white blood count was 8.4 which is on higher side of the prescribed range of 4.0 - 8.0! This was the first time in my entire chemotherapy sessions that white blood corpuscles' population reached the higher limits of the prescribed ranges. This would have a positive effect on the immunity, though the infusion of Irinotecan and the use of Capecetabine for the next two weeks would again eat into the counts!
• there was a huge delay in getting the oral report of my weekly blood test today. It took almost three hours for the nursing staff to get the report from testing lab! This had a ripple effect on the treatment and discharge times. (I was discharged at around 7:30 PM instead of the usual 5 PM!)
• the nursing staff had a tough time this week too to get a proper vein, which would be used for the infusion of the drugs. After two pricks, each in left and right hands, they managed to get a vein in my left forefinger, which was a point of high inconvenience!
  
• my medical oncologist, Dr.Niti Narang spoke to me and was feeling positive about my body responding to the chemotherapy drugs. Of course, talking to her has always been an experience for me given her positive reinforcing words for me! :)

I reached home at around 8:45 PM today after getting discharged. I am feeling now terribly tired with my colostomy bag roaring since I had not much food today, and feeling drowsy and dull after the day's session! I wish the next couple of weeks would be smooth for me! :)

(Attached is a simple and video of my getting infused with chemotherapy drugs. I smiled in the video not because of the joys of getting the painful infusion but because life has given me more surprises! :) My mother was lost in her thoughts as well in the video!)

Chemo-15 today.

I have had my fifteenth dose of Cetuximab today. This marks the completion of fifth cycle out of six cycles proposed until now at Bangalore Institute of Oncology(BIO). I went to the hospital today with (a) severe pain around the edges of my feet which were split in several areas thus affecting severely my walk and (b) lot of inflammatory abscesses in my face which were a major irritation.

A few highlights of today's chemo session:

• Blood counts marginally improved (primarily, the white blood count increased from 3.70 last week to 3.84 today, which is a marginal increase given that the minimum still has to be 4.0)
• Nursing staff was literally on their toes in finding a vein in my hands for the infusion of the chemo drug. Finally, after a couple of pricks in my right hand causing severe pain for me, they had found a vein in my right forearm (See the attached photograph)
• My doctor, Dr.Niti Narang, did not visit me today for the simple reason that by the time the intra-venal (IV) infusion had started, it was already 3 PM and that was the time when my doctor usually completes her duty. (Of course, the duty doctor, Dr.Kartik had a look at my blood report and inquired about my health in general)
• Waiting time for the admission into the recliner was more than one-and-half hours, which was way beyond my limits of patience!

One good news for me is that I need to take a one-week break from the Xeloda tablets until next monday :) These tablets usually are affecting my appetite and general sleeping patterns. Of course, stopping them for a week might not make a major impact on my lifestyle though it is a welcome relief for me!

(The photograph shows two-plastered areas where pricks were made for the intra-venal (IV) infusion. The first prick on the little finger did not give a good vein and the second prick in the forearm was successful in getting a good vein. One can observe that the area below the fingers was black and a bit swollen because of the multiple needle pricks that were done in this process of getting a good vein for the infusion of today's chemo drug.)

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).

My new avatar.

After a long time, I got my head completely shaved :) This is to avoid the irritation on the skin and to avoid any infections.

Metabolic alterations

Today, I had my third dose of Neupogen at Ketham's Hospital, Vidyaranyapura. The effects of the injection have been drowsiness and mild dullness in the body, which is making me sleep for extended hours in the day time too! My eyes would become red and skin succumbed to reddish sores on the chest and lower waist! It is a minor irritation to have the injection daily on one side and to have the side-effects in the body working on the other!

Now-a-days, it will not be before 7 AM, I wake up in the morning. This is contrary to the earlier times, when I used to break my sleep at around 5:30 AM. More chemotherapy toxins in the body and resulting restlessness is forcing the body to take sleep at irregular intervals. These disturbances in the body metabolism will definitely have long-term effect on my normal life. I hope once I win against the disease, I need to spend considerable time in bringing the body back to its correct metabolic rates.

Jumping around?

Today, I had an afternoon nap for around two hours. In the strict sense, it should not called a nap, though. :)
Because of the tablets and the toxins moving inside my body, there is some kind of irritation inside which I cannot explain. I always feel to jump around whenever I am awake but my colostomy pouch should permit me doing that!

Last Friday, I had my fourth cycle of chemotherapy at BIO with Cetuximab and Irinitecan. I continued the oral administration of Xeloda, 3 x 500 mg in the morning and 3 x 500 mg in the night! I had been taking the same drugs for my earlier doses of chemotherapy too and the resulting side-effects, more important one, had been tremendous loss of hair! (See my pics attached!)

Also, I was advised to take the Neupogen injection per day for four days since the administration of Irinotecan may induce neutrohil count to go down in the blood. Since the injection is the sub-cutaneous one and given that BIO is around 16 kms from my home, I preferred to take the injection in the local Ketham's Hospital. :)

Often, for some, there would be long hiatus in life for several reasons - depression troughs, busyness in life or critical illness. The hiatus and the ensuing vacuum would be very difficult in the sense that it takes a sustained, long and dedicated effort to get back to the mode which you leave before the hiatus. Sometimes, this break in the life is helpful and sometimes is sickening.

Ever since I was diagnosed with colo-rectal cancer (CRC) early October 2008, I have been off from my active life - a stage of life where I had my feet in work, research, reading and play. The suffering has been so huge that my mind was not thinking anything else except the disease and the resulting pain. I did not have a chance even to sit and key-in my thoughts in my blogging world! It had been an old idea to capture all my experiences over this most painful suffering I have ever experienced in my life until now in the form of a written diary - either a printed form or an online resource. This blog serves and helps me in thinking myself out while going though this painful phase in my life.

To have a brief on the happenings over the past one year, here is a gist:

September 2008

• had severe anal pain and bleeding while passing stools
• consulted a local physician in Bangalore and took pain-killers and laxatives
• visited the family doctor in my hometown (Kadapa, A.P.) and had a diagnosis

October 2008

• had a biopsy test in Chennai after my family doctor referred the case to a specialist
• diagnosed with colo-rectal cancer (CRC)
  
• decided on taking radiotherapy in VS Hospitals, Egmore, Chennai
• had a prognosis test in the form of KRAS, which showed that the tumour is gene-mutation negative
  
• did semen banking in Prashant Hospitals, Chennai, since it is the prerequisite and recommended step prior to taking radiotherapy
• first PET CT scan done to know the extent of the disease (it was at Stage IIIb)
• started radiotherapy in the mid-October with 5 daily doses of radiation for 6 weeks coupled with Oxaliplatin-based chemotherapy every week

November 2008

• returned from Chennai to my hometown for taking rest for 2 months. (This rest was necessary after radiotherapy before further treatment).
  
• suffered with proctitis
  

December 2008

• stayed at Kadapa, my hometown for post-radiotherapy rest

January 2009

• returned to Bangalore to plan for a permanent colostomy surgery at Apollo Hospitals
• a PET CT scan confirmed the metastasis of the disease with its spread to liver and lung!
  
• Dr.Bapsy of Apollo Hospitals recommended Avastin-based chemotherapy along with 5FU and Oxaliplatin
  

February 2009

• started chemotherapy at Apollo Hospitals, Bangalore

March 2009

• continued chemotherapy at Apollo Hospitals, Bangalore
• had another PET CT scan after 3 cycles of chemotherapy. The scan this time shows improvement in the recession of the disease though not remarkable. Dr.Bapsy advised to continue the chemotherapy with the same protocol.

April 2009

• had Salmonella bacteria infection and admitted to the Apollo Hospitals for a week. Survived with severe symptoms of diarrhea and fever
• chemotherapy stopped because of infections. (It is not advisable to have chemotherapy when body is infected)

May 2009

• admitted to Apollo Hospitals due to an abscess in the rectal area
• got the abscess drained. Doctors, Vijay Kumar and Nawab Jaan of Apollo Hospitals advised at least a four-week rest before the surgery so that the drained abscess would heal.

June 2009

• not convinced with the Apollo's team of doctors on the state and curability of the disease, took the opinion of Dr.K.S.Gopinath of Bangalore Institute of Oncology (BIO)
• had a temporary colostomy surgery by the team headed by Dr.K.S.Gopinath

July 2009

• consulted Dr.Niti Narang, a medical oncologist with BIO on further chemotherapy
• a PET CT scan showed a progressive disease :-(
  
• started chemotherapy at BIO, the protocol including Cetuximab, Irinotecan and Xeloda

August 2009

• started chemotherapy at BIO, the protocol including Cetuximab, Irinotecan and Xeloda
• admitted once to the BIO for cure of low neutrophils in the blood and got administered Neupogen

As recent as last week, I had another PET CT scan which showed good response to the chemotherapy and the disease got reduced by at least 60%! :-) Dr.Niti advised continuing the same protocol of the chemotherapy.