Saturday, December 22, 2012

Day 5: 23 Dec 2012

The day has started well. We made the Medicine Calendar for Ma as we were losing track of what medicines to give her when and we were afraid of missing a dosage. This was I guess we can cancel each dosage after giving it.

Ani has been forcing Ma to have at least 3 lts of water every day, two times the Protien drink, two times coconut water, pomegranate and other fruits. Ma, of course, is not that happy to have so much water as it forces her to go to the loo quite often but thats how it is.

Ma started complaining of a little bit of sore throat today. We've started her on warm water and gargling. The effects are expected to start now as her immune system becomes weak. Given that Bangalore has a changing weather pattern, we are trying to keep her warm with shawl, muffler and warm water.

Day 4: 22 Dec 2012

The day went very well with Ma having no side effects of the chemo till now. She is normal and regular. She had regular food, had a small walk and watched TV et al.

All is well on Ma front!

Friday, December 21, 2012

Day 3: 21st Dec 2012

Ani and I attended Tarush's Carol singing session at his school and then went to pick up Ma as she was going to get discharged today.

Ma has taken the chemo very well and was up and about today post the over-night observation. She had a good night sleep and was sitting and watching TV when we went to pick her up this morning. She was very eager to go home and leave the hospital. We started the discharge procedures and then waited as we were to be given the green signal. This would take some time since the papers had to be sent to the insurance agency who had to approve and send the same back. In the meantime, Dr. Shekhar Patil came and visited us and was very happy with the progress with Ma. He told her that she had nothing to worry about and was good.



We were given the discharge summary which contained the do's & dont's to take care of Ma over the next few days. She had to live her regular life with regular diet but no food from outside, not even bakery products. All food consumed by her has to be cooked at home and fresh. While she can and should have fruits, we were told to avoid chickoo and grapes as their skins are very thin and the pesticides can be absorbed by the fruits directly. Also any fruits given to her should be washed and peeled. All vegetables should be boiled and cooked well and her water should be seperate as well. She needs to avoid crowded places and dusty places. All this is to ensure that she does not catch any infections since her immune system will be at its weakest. The worst part was when the doctor told us that we should avoid non-veg as much as possible and give her less fish. I don't think that's going to happen. How can you take away fish from a Bengali??!!!


We have been informed that if she has fever, is very weak, does loose motions for 3-4 times a day, has excessive vomitting or does not eat well; we have to get her to the hospital asap.


Other than that she has a dosage of over 3-4 tablets per day which include one of the chemo ones, specifically Prednisone.


While all this was happening, I was busy with the discharge paperwork and Baba was frantically calling every few minutes to check if we have left. In the middle when electricity went off in our building Baba actually caught hold of the security guard and got him to switch on the generator asap lest Ma comes and she has to climb up the stairs. Too much love is happening now and that is so cute to see!


We were finally discharged at 1pm and we started for home reaching home by 1.30. Ma had her lunch and medicines and took some rest watching her favorite TV serials.


We now have to keep watch and take care over the next few days as these will be crucial. Her next chemo has been fixed for 9th Jan prior to which she needs to have a blood test done on 28th Dec and 8th Jan.


Keeping fingers crossed that she has minimal side effects to deal with. If the side effects are little, she will get more confidence to deal with this the next time around. She already has gained some confidence when she went through the chemo with ease.

Wednesday, December 19, 2012

Day 2: 20th Dec 2012

{Touchwood!} Ma has responded well with the 'Rituximab' part of the R-CHOP regimen yesterday. She was well and had a good night sleep as well. When I came in this morning to relieve Ani this morning, Ma was sitting on the chair reading an Amar Chitra Katha comic and had had her breakfast of soup.

About 30 minutes back (at 10am) we started the next set of activities to administer the CHOP part of the regiman. She was given a few antiemetic drugs to stem the coming nausea and vomitting that may happen. She was then given a tablet that forms the P part of the CHOP - Prednisone & an injection that forms the O part of the CHOP - Oncovin. She was then started on an IV drip for the H part - Hydoxydaunorubicin (doxorubicin). This is apparently the more 'dangerous' one that will cause the side effects. Post this she will be on a drip for the C part - Cyclophosphamide and then the flush.

The R-CHOP process was completed by 7pm today and Ma has taken all this very positively. There have been no reactions till now and she will now be under observation overnight to make sure that her body does not react adversely to the chemicals.

All is well till now and she has had good dinner as well.

Day 1: 19 Dec

Ma got admitted into HCG this morning around 10am. We got a call from the hospital to come in as the Private Room (that we had asked for) was available. When we reached HCG everything was again dealt with very professionally. We were asked to go to Tower 4 where a room was allocated. I had to get the insurance form filled and the admission slip was given to me.

We got into Room #204 and the nurse immediately came in to collect the reports. A team member of Dr. Shekhar Patil's team - Dr. Vaneeta - came in post that and gave us a run down on what to expect. We were told that the Rituximab would be given today followed by CHOP tomorrow. They would then keep her overnight to assess any reactions and then discharge her on Friday to go home. We would be given a discharge summary which would also have all the emergency numbers and to-dos when we get home.

We have been told that in case Ma feels very weak (cannot get up from bed) or has fever or has excessive vomiting or loose motions, we should just bring her to the hospital. While the doctor will give us medicines to deal with the side effects, anything excessive needs to be treated at the hospital immediately. We are preparing ourselves to gauge what can be considered excessive and are asking the relevant questions to the doctor.

A bone marrow was done when we were there and we await the results of the same. We hope that the cancer has not spread to the bone marrow. We have decided to go in for the first session through an IV route rather than the chemo port which we will evaluate for second session. I would want Ma to get a chemo port as I believe that finding her veins at a later stage will be very difficutl and painful. Ma, however, is petrified of surgery and does not want to get a chemo port installed. I guess this is a discussion that we will have later. Chemo port, of course, also costs a lot of money but can be in the body for up to 5 years. It is an easier method as the same place can be pricked for chemo session multiple times rather than having to search for a vein everytime she goes in.

Ma has just started on her first dose of Rituximab and is taking it quite well. There are no reactions as of now and we are monitoring the progress. The battle to beat cancer has started today and we need your prayers and support.


Challenges

The biggest challenges that we think we will face with Ma's chemo sessions are:
  • Protecting Ma from infections in the house: With Ipsi and Tarush around and them getting cold and cough with the Bangalore weather, it will be a challenge to keep them away from Ma and protect her from these possible infections.
  • Ma's physical strength: We are confident that Ma can take the chemo and deal with it. Our concern is when the side effects kick in and Ma goes through the same, we hope that her body is strong enough to take this and come out on tops. Ani is taking special care of Ma with constant food and liquid intakes which include raw boiled papaya, pomegranate juice, raw papaya juice, good home made food, fruits, protien drink and milk to build up her immune system. It seems to be working right now and we hope that continues.
  • Ma's mental strength: Our biggest concern is Ma's mental strength when the side effects kick in. We hope that she is strong and selfish to want to overcome these effects and has the will to fight and defeat the disease. At her age we are afraid that she might slip into a depression and a thought that she has lived her life and does not want to go through these debilitating side effects. If she gives up mentally, then the body will give up the fight as well. We are only hoping that she has the selfish interest to survive for Baba. 

The battle begins on 19th December. 

Treatment

While we were discussing with Dr. Poonam Patil at Manipal Hospital we also reached out to multiple doctors and friends to find out if there was any other place where we can undergo the treatment.

Across multiple such discussions - with my friend Arundhati whose father passed away with cancer two years back, with Ganesh whose mother was undergoing cancer treatment, with brother-in-law's brother who is a radiologist in US, with Shruti Hazra who is a radiologist and knows doctors and with Dr. Anand a surgical oncologist from Adyar Cancer Institute in Chennai who is a close friend's friend - a single name and hospital emerged as a common consensus. Everyone was recommeding Dr. Shekhar Patil from HCG Bangalore Instutite of Oncology Speciality Centre for Bangalore.

We had an appoitment with Dr. Shekhar Patil on Monday, 10th December at HCG. When we landed there everything was handled very professionally. I was shown to a room where I had to fill out a form, was asked if it was going to be cash or through insurance and had to register Ma as a patient. We were given a card and a file and our previous reports were taken from us. We were then asked to go to the third floor where we had to wait for some time. We were then met by Dr. Satish first who works for Dr. Patil. He sat with us and explained the process to us and basically collected the info for Dr. Patil. We then met with Dr. Shekhar Patil and were immediately put at ease by him. He is very down to earth and emphatatic in nature. He made us feel important and answered all our questions while at the same time telling us that we should undergo the treatment as it is completely curable. He looked at Ma and told her that in six months she would be up and cured. That gave us good confidence in him and the place.

The treatment for Lymphoma is essentially chemotherapy and the regimen is called R-CHOP. It comprises of five chemicals that are administered to the patient through IV method. R-CHOP stands for Rituximab - Cyclophosphamide, Hydoxydaunorubicin (doxorubicin), Oncovin (vincristine) & Prednisone.

The treatment is administered once every three weeks and for a total period of 6 to 8 sittings. After the first three sessions, a PET Scan is done to find out if the cancer is under remission which usually happens. After that there are three more sessions to ensure that the cells have been completely melted away. Another PET Scan is done at that time and if needed, two more sessions are conducted. It is said that usually patients require only 6 sessions for the cancer to have gone under remission.

While R-CHOP has its own set of side effects which include nausea, vomiting, loose motions, ulcers and possible hair loss; the chemicals have advenced to a stage where the effects vary according to the patient and some have known to have no or minimal side effects. The key concern is to ensure that the patient is protected from infections just post the chemo session as the body is most vulnerable at that time. The immune system is at its weakest and the body needs to be protected at all times.

We have decided that Ma's chemo sessions will begin on Wednesday, 19th December at HCG.

Staging

Ma was diagnosed with Lymphoma. This was devastating as our world had turned topsy-turvey in a matter of one week. From assuming that Ma was just getting old to having mortality thrust in our face, it was difficult times. But we had been absolutely transparent with Ma and everyone else letting them know exactly what was going on.

At this stage her case was transfered from Dr. Kini to Dr. Poonam Patil, a medical oncologist at Manipal Hospital. Dr. Poonam Patil is an extremely soft spoken and descriptive doctor. She was clear that this is a completely curable form of cancer and we did not need to worry about anything. 

The good news was that this was one form of a cancer that was completely curable. The next point was to get an accurate staging of the cancer. Lymphoma can be split multiple ways:
  • Cell type: Lymphoma can be a B or T type Lymphoma.
  • Stage: It can be Stage 1 (localised), Stage 2 (more than one cancerous lymph nodes found below the diaphragm), Stage 3 (more than one cancerous lymph node found above and below the diaphragm) & Stage 4 (infected the bone marrow as well).
  • Type: It can be low, intermediate or high level of lymphoma. 
 Disclaimer: These are my undesrtanding from various conversations and conveyed in a layman language. Medical diagnosis and nomenclature will be be different.

To get an accurate staging of the Lymphoma a PET Scan was ordered. Ma was pumped with dye and chemicals and the scan was done acorss a 2 hour period. Post the PET Scan she was finally discharged. We went back after a few days to meet with Dr. Poonam Patil for the final diagnosis.

Ma was finally diagnosed with B-Type diffused, Intermediate, Stage 3 Lymphoma.

Dr. Patil explained to us with the help of the International Prognostic Index that at her age and stage, she had a survival ratio of 56% over a 5-year period and advised us to definitely go for Chemotherapy treatment for the same. Lymphoma can be treated only through chemotherapy and is the advised route.

We now had to find out a right place and treatment for her.

Discovery

On 30th November as we were partying in our house with friends we got a call that my mother-in-law was very sick with acute stomach pain and gastro issues and was taken to the nearby clinic. She had been having 'gas' issues for the last week and was just seeming to recover with medication. However on Friday, 30th Nov it became very acute with her body not able to retain even a few drops of water. She was admitted into the clinic hospital and an ultrasound was done to determine any internal issues.

When my wife (her daughter) landed at the clinic in the morning, she was advised to take my mother-in-law (MIL or Ma, as I call her) to a hospital specifically one that has an oncology department as they had found some enlargement in the ultrasound but were not sure what it was. We rushed Ma to Manipal Hospital where she was admitted under the care of Dr. Kini from the Gastroenterology department with a case of severe belching and gas. Dr. Kini ordered a CT Scan as a first report in order to ascertain the nature of the enlargements as he was of the opinion that ultrasound was not really a good tool to diagnose the problem. At the same time he started her on some medications for her belching and gas. The CT Scan was done on Saturday, 1st December and the reports were awaited.

In the meantime on Saturday late night she went in to the bathroom and came out with heavy sweating and weakness. An immediate ECG was performed which revealed that her heart rate had dropped to 38. A quick blood test revealed that there was an acute loss of sodium in the body and she was immediately put on a sodium and potassium drip for next few days. This stabilised her body and she started gaining back strength while at the same time her belching and gas seemed to have considerably reduced.

The CT Scan report revealed that her lymph nodes were un-naturally enlarged to the tune of 4cms diameter. A lymph node is an oval-shaped organ of the immune system, distributed widely throughout the body and linked by lymphatic vessels. Lymph nodes act as filters or traps for foreign particles and are important in the proper functioning of the immune system. They are packed tightly with the white blood cells called lymphocytes and macrophages.They become inflamed or enlarged in various conditions, which may range from trivial, such as a throat infection, to life-threatening such as cancers.

At Ma's age an enlarged lymph node can either be due to cancer or TB (tuberculosis). Dr. Kini now ordered for a biopsy of the lymph node to find out if it was cancerous in nature or it was TB. We now waited with bated breath praying that it would be TB.

However, we soon got to know that the lymph node was cancerous in nature and she was now diagnosed with Lymphoma.