Monthly Musings : December -20 A Year Like Never Before

 

Monthly Musings : December -20 A Year Like Never Before

This month on 5^th Dec Manas had his quarterly chemo which is the LP. The chemo went fine but we had forgotten the side effects hence he had the usual vomiting and mood swings but later in evening he was fine and discharged. Manas had his exams this month and he is now regular with his studies, he did decent in all papers barring Physics which is his tough subject. Shalini arranged for online tution for him. Shalini along with Pushkala maam had gone to Pallakad to do the small pooja which she had prayed for his recovery, the pooja was done nicely and also the astrologer cum priest mentioned that Manas will do quite well and just little more treatment has to continue, which is the maintenance phase. Now we play everyday for an hour. Manas wanted a new set of cricket pad, bat and gloves and we went to Players Choice and got it. He was able to practice in our apartment nets. We also went to Anitha’s Cjhristmas dinner something Manas had promised he will come next year walking on his own and wanted to do that. That was the only other external interaction we had. Sangita and Vishal had also drove down from Pune to meet Manas. The year 2020 has been a transformational year for everyone, it made us face our worst fears, forced us to come out of comfort zones and made us value all those things that we take for granted. Personally 2020 has been the antidote for our 2019 journey and it allowed me to work from home, balance time between Manas and work and made health a priority. I wish the year is seen as Lifes way of first giving a test and then teaching us the subject and 2021 brings in new positivity and hope to everyone. Would like to end the year to all our well wishers, friends, families and not to  mention the amazing doctors and support staff at MSMC who constantly kept us motivated and positive stating this time too shall pass and it did indeed. Have a blessed new 2021.

Monthly Musings : November -20 The turnaround begins

 

Monthly Musings : November -20 The turnaround begins

30^th November was exactly a year ago when Manas was operated for the tumor and we got to know that it was malignant and now exactly after a year, he is getting back to normal. This month was when we did all the re-tests which included doing MRI and Echo and both came as normal. What was very heartening and satisfying was the Dr Komal Prasad (Neurologist) comment on his report which stated ‘remarkable progress due to his will power’, this summed up our emotion and journey of last 12 months. While we don’t want to think about it, it brings both tears of pain and joy at what Manas endured. This month, he started running in the colony and also we got out to play cricket with tennis ball for a hour. His 2 friends Aditya and Gautam come and join us. It is so nice to see him back in the nets, have fun and enjoy the game. The Corono virus also completes a year since it turned its ugly head but then being at home and quarantined is a new normal. The one year has been a year of turnaround and the entire world was giving us company.  His grandparents also went back to their home in Pune after being with us for 11 months and they were an immense support. The IPL also concluded and RCB reaching playoff was a welcome progression something that Manas was rooting for. This month also had India tour of Australia though we got hammered in the first 2 One day international. Sagar also left for Indore to spend some time with his parents and meet his friends. I hope and pray that from December is a beginning of turnaround for entire world and sign of better times to come. Like us, let this be a positive turnaround for everyone. Amen

Monthly Musings : October Real Birthday 2020

 

Monthly Musings : October Real Birthday 2020

This was the 2^nd month of maintenance phase, we had to visit the hospital once in 2 weeks and that too only for blood test and correct the tablet dosage. Manas parameters are coming back to normal limits, his WBC has to be kept low. We also went and met Dr Komal Prasad the Neurosurgeon who performed the operation on Manas, he was very happy to see his progress and in fact wrote on his report that the remarkable progress has been due to his will power. We were very happy to see that. He suggested we do a MRI and keep so that we have a baselined report, something that we will be doing in end November along with the echo report. This month on 7^th was Manas 17^th Birthday and it was a joyous occasion to celebrate, made cake at home, he got his friends on zoom call and got him a personalized Chelsea and Barcelona football jersey. This month we also did the 1 year Sharddha function for my parents, the priest also did a health pooja for Manas. Now Manas is more or less fully independent hence his Physio said he can do the exercise on his own and no longer required. A zillion thanks to Kirubanidhi the physio who not only was a great physio but a became a good friend to Manas. Manas regular studies started hence got a new laptop for his online studies. October was the month of re-birth, a real birthday.

Monthly Musings : Come September 2020

 

Monthly Musings : Come September 2020

This was the first month of Manas maintenance phase started. Time seems to fly past as he has got back into the routine of exercise, study and tv. He has developed interest in drawing and painting and did some wonderful sketches. Sometimes in discussions his initial months of pain comes up but he does not want to even think about it, wants to erase this as a bad dream. This month we decided to meet the priest and perform the  1^st year Shraddah ceremony for my parents as it is over 1 year over due. This month also had many birthdays and one more reason to celebrate. Started giving batting practice with a tennis ball inside the house and he has picked up nicely, though he needs to get full balance. Now we have follow up once in 3 weeks and his hameglobin has increased to 11. Hair has also started growing. Next month on 7^th is his birthday so plans to get new Bat and gloves. The Covid situation does not seem to improve at all and praying for a solution soon. A month of new beginning.

Weekly Musings : Week 40 Have to Be Careful

 

Weekly Musings : Week 40 Have to Be Careful

As things were settling down we had a small incident where Manas slipped a bit in the bathroom and got a cut in his leg. There was slight bleeding as the toe skin had come off. His GCSF was given and his counts were good. His maintenance phase now officially starts from 7^th September. As he had a cut we were asked to be very careful in the maintenance phase to avoid any kind of injury or infection. Funny how mind works because as soon as the major phase is done, there is a rush to catch up, but then there is need to exercise caution and be careful.

Weekly Musings : Week 39 Still Settling Down

 

Weekly Musings : Week 39 Still Settling Down

This week Manas maintenance phase was to start, he was excited. We went to do the blood test and his counts were low hence Dr Shobha asked us to give GCSF for 4 days and then come again. We all thought things will settle down soon but realized that 6 months of intense chemo injections will take time to taper down. The week was fine and Manas has started his studies and onlines classes. The school also admitted him and he is settling down to the normal that was there a year ago. We now give him cricket practice at home with a light tennis ball.

Weekly Musings : Week 38 The Normal Settling In

 

Weekly Musings : Week 38 The Normal Settling In

This week Manas got his blood test and parameters were normal, though heamoglobin was bit low Dr Shobha said it will come back. With no further injections, it is the settling of the new normal. Manas was very happy and took a snap in the same dress he had bought a year ago for his birthday. Time seems to fly and didn’t realise what all the poor kid had gone through, he has taught us so many things and so many people have touched our lives. It was a an emotional feeling of having conquered something big. The normal is something all of us are slowly getting used to and pray the world also comes back to its normal self.

Weekly Musings : Week 37 Our Freedom At Midnight

 

Weekly Musings : Week 37 Our Freedom At Midnight

15^th August was the 74^th Independence day celebration for India and it was no less a freedom for Manas as well as his last chemo injection of Cytrabin was given on 15^th August. He was very happy and relieved and celebrated by speaking to his friends. Evening he played a few shots, somehow balancing himself. On 15^th August the cricket legends MS Dhoni and his buddy Suresh Raina announced their retirement. I was telling Manas that one MS retires and paves way for the other MS (Manas Shalini) and another left handed batsmen retires and he can fill those shoes. It was an emotional feeling like having scaled the peak after a long and arduous trek. The maintenance phase starts now and the same care and discipline needs to be followed, pretty much like our freedom, it was tough to achieve and require equal effort to maintain the same.

Weekly Musings : Week 36 Semi-Final after 250 Days

 

Weekly Musings : Week 36 Semi-Final after 250 Days

This week Manas completed 250 days of his treatment and the semi final week as next week will be his last chemo cycle. This week also like last week involved blood transfusion but now all seems to be so normal & routine.  The festive season for Hindus has begun and it seems to take baby steps for Manas as well as we see the routines coming back, be it independent walk or doing his studies or shoots of hair starting to grow all that in past seemed insignificant now shows sign of growth and positive change. As I reflect over the past 8 months, the world revolved only within home and hospital which has become a familiar place and somehow I don’t seem to have a feeling of having missed the earlier routine of travel, meeting people, eating out, vacation,running etc. When priorities change everthing else seems insignificant. We are now all prepped up for the grand final next week.

Weekly Musings : Week 35 Health Soldiers

Weekly Musings : Week 35 Health Soldiers

This week we expected it to be a routine check up though the doctor did tell that his blood counts may drop. While Manas was his normal physical and mental self the blood test showed low count of platlets and hameglobin which means he had to be transfused blood. In normal times this would have been easily arranged but due to Covid, there is shortage of this and I was asked to go and meet the blood bank and arrange for it. While waiting at the blood bank to donate blood I could see what all work the Health workers or what we should ideally call Health Soldiers were doing. There were families in emergencies and people they had got to donate blood while the scare and fear of the virus lurked around. While I was lying in blood and as I squirmed at thought of the needle prick was thinking how many of such and more Manas has endured. How many of these the patients undergo while the Health Soliders painstakingly go through this assuring that things will be all right. While there are soliders protecting our borders we have these soldiers protecting our health, god bless them. Amen

Daily Diary for Month of August 2020

244) Saturday 1^st August : Manas woke up a bit late and started his studies. Started with Maths. Today he also started doing bit of the strenuous stretches as well. GCSF was given. Today tamrind rice made which was my preference.

245) Sunday 2^nd August : Manas woke late, today his Cytrabin chemo injections starts, Dr Shobha had reduced the dosage. Did not give him Emset as he felt ok. Now his routine studying time table also set for 2 hours daily. Morning made Pasta and night egg curry and Shalini made Gulan Jamun. Another routine day.

246) Monday 3^rd August : Today was ‘Avani Atam’ ritual and hence woke up early and did that. Manas woke a bit late. Took his Cytrabin injections and did not give Pan or Emset as he felt ok. Evening his exercises was done and today he was made to sit and stand, it was difficult to get up and with help he could get up. Night we went through the snaps and videos of the last 8 months, he was not keen to look at that as it was not a happy sight, told him look at his progress and the journey. Tried making baked samosa for snacks came out ok.

247) Tuesday 4^th August: Day 3 of Cytrabin and one more to go, after this just one more week of chemo. Another routine day, played chess with him and after a 5 day winning streak lost to him. Today he was able to sit and stand with some assistance but much better than yesterday. One more day of progress.

248) Wednesday 5^th August: The final dose of this week’s Cytrabin was given. Manas had late lunch and then had his exercises, later he felt nauseauting and vomited couple of time. Shalini got worried but the main reason is that we did not give him Emset & Pan as he was able to bear the medicine and had no such sensation. He slept in evening and had light dinner of curd rice and felt better.

249) Thursday 6^th August : Manas was better, gave him Emset though. Today his GCSF injection starts so that his counts are in check. He was his usual self, ate light and did his exercises. Today after a long time pav bhaji was made.

250) Friday 7^th August: Today is the 250^th day since his operation. Another routine day, tomorrow is his checkup and another blood test hope it all comes normal as only 1 more week to go. He did his stretches and now is bit smoother, his hair has started growing though they are very thin and very weak. He was asking how much time till he gets his normal hair back said couple of months. He has started his routine studies and thanks to covid the syllabus is curtailed and he was happy.

251) Saturday 8^th August: Morning we went to hospital around 11am. Manas went walking only. Met Dr Shobha, she asked for blood test and said will then write the injections. I was expecting his parameters to be normal but his hameglobin and platlets were low hence he was again transfused blood and platlets. Shalini decided to donate blood but as he hameglobin was 10.50 they did not take, asked Sagar and Fabian to donate. Sunita also came but her hameglobin was also low. His transfusion was done by 6 pm and then we came home. Did his calcicum check and it was also low so Dr Shobha asked to continue Shelcal for 2 more months. For 3 days no injections after that the last dose of Cytrabin and then GCSF, she said the platelets normally go up. She asked not to do any rigorous stretches for a week as they tend to keep the counts low, hence asked Krupanidhi not to come for a week.

252) Sunday 9^th August : Manas stayed till early morning wanting to watch the Barcelona & Napoli match which Barcelona won. Manas woke up late. We ere planning to make fish but no delivery on same day. He had sambar for lunch and night made my Chinese curry. Evening made beetroot cutlet.

253) Monday 10^th August: Another normal day, for a week no Physio coming and I only give him the basic exercises as he should not be stressed with the tougher exercises. No GCSF or Cytrabin. Manas now spends 2 hours studying and his course is also scaled down due to Covid. The football season has started and he has developed a good interest in this game as well. Made beetroot soup for him.

254) Tuesday 11^th August: Another normal day of exercise, eat, study and a round of chess. Lost the game after a winning streak. Today is Gokulashtami hence variety of dishes prepared, so binge eating. Manas could sit and do a proper namaskaram and was happy at doing that and becoming independent. His walk is still not fully balanced but he manages on how own while someone is around him. Tomorrow the last chemo cycle of cytrabin begins.

255) Wednesday 12^th August: Morning he woke up and reminded me that he has to be given Pan and Emset as Cytrabin starts today. Gave him that. Today made Pomfret Fish fry, he had asked for a change for some time. Turned out well. Seems to have helped in his hemoglobin count as his palms looked a bit pinkish. Gave him the the first of the 4 Cytrabin chemo injection. He was a bit tired so skipped the exercises and he slept for sometime in the evening. Night ate curd rice as lunch was heavy. At night he felt nauseauting and vomited couple of times and then went to sleep.

256) Thursday 13^th August : Day 2 of Cytrabin given and last 2 more to go. Gave him Emset & Pan and today he was fine and did not throw up. Mami had made laddoos today. He has been craving for raw cucumber salad and finally had one today. After all the exotic dishes, time for some basics. He did the exercises on his own as I was busy with work. Another busy day passed by.

257) Friday 14^th August : Day 3 of Cytrabin. Manas was fine and had a routine day. Evening did little exercises so as not to stretch himself. Happy that just one more day to go. His hair seems to be growing back quickly and he was happy. Night he staed late to watch the European cup match between Barcelona and Bayern Munich where Bayern thrashed Barca 8-2, he was bit sad but then laughed it off whereas Sagar was very disappointed and heartbroken.

258) Saturday 15^th August: Gave the last dose of cytrabin injection, was a very emotional feeling for Shalini and me. Manas was his usual self where he takes things lightly, his biggest strength. He said that is over now and he is looking forward to go out, play and meet his friends. He was excited and called up his friends. He spoke to Mihir who like him had undergone the same protocol. Evening he played a few shots at home and was very happy.

259) Sunday 16^th August: From today next 5 days GCSF injections to boost his wbc and the maintenance phase starts. Manas did his exercises and also played couple of overs at home. Evening made pizza at home as celebration. A pleasant day.

Weekly Musings : Week 34 What Back to routine means

Weekly Musings : Week 34 What Back to routine means

This week his last hospital chemo of LP was given and now rest of the chemo is through injections given at home. He will need to visit every week for blood tests and later every 2 weeks. So now 2 more weeks to go. Things are now back to routine and the day has to be planned. With the covid situation and the long gap, Manas needs to pick up from where he left which starts with the studies, the increase in exercises and dreaming about his practice in nets. After 8 months where you day is decided by the events that unfold it is time to plan for the days. Time for routine to set in.

Weekly Musings : Week 33 Finally the Results are Out

Weekly Musings : Week 33 Finally the Results are Out

This week there were 2 types of results, the first was the 10^th Board results and most of Manas’s friends have scored very good results. Manas was saying if he had given the exams he also would have scored 90%+ but given his easy going nature he was happy for his friends. This week was also when his PET scan was done to double check his results are all clear and it also turned out quite well. It was a emotional moment to be in the same room where it first started and seeing ‘Baba’ being there to bless us, looks like the schools results these results also turned out well and lay’s a foundation for a great future.  

Weekly Musings : Week 32 Of Tests & Results

Weekly Musings : Week 32 Of Tests & Results

This week was one of the routine weeks with daily medicines, exercises and monitoring standard parameters. This week we had to get our selves tested for Covid as well along with Manas as his PET scan was scheduled the next week. We had gone early morning and there was a lady who had come to collect her results and was tested positive. She was trying to figure out what should be the next steps, while she was doing that there was sense of fear in our minds as we don’t know who is carrying the virus around us.  With caution we gave our tests but then this fear of an unknown enemy always existed. As we near the end of the chemo cycle, the Covid crisis is showing no signs of subsiding and seeing the daily rising cases and queues in hospitals can only pray that there is a quick solution on its way. There are various trials and tests happening and like us the world awaits the results.

Weekly Musings : Week 31 A Roller Coaster of Emotions

Weekly Musings : Week 31 A Roller Coaster of Emotions

This week was a roller coaster week, first his multiple test from Echo to Covid and then CBC and Pro BNP test all meant Manas got very frustrated and couldn’t take it but then when all reports came normal it was a very happy moment. Hospitals is a great leveler where irrespective of who you are, each one is coming with hope and wanting to be cured. The radiant smile on face one getting a positive news just changes the whole approach and we could see in ourselves how encouraging this was. This week has start of the 8^th Month and looks like a month of turn around and positivity. Amen

Daily Diary for month of July

213) Wednesday 1^st July : Start of a new month and a fresh start. Manas has slowly come back to his normal routine, woke up early and got ready as the Physio sessions will re-start. He did some good sessions and later slept at noon. Evening he got back to watch his football game and had dosa for dinner. Forcan medicine is not stopped instead there is the heart medicine. Nice day

214) Thursday 2^nd July: Back to normal routine, did his physio stretches. Today some new exercises were added to strengthen his muscles. Later he did 2000 rounds of cycling as well. He was craving for chat but as he cannot eat raw foods cooked corn and roasted onion and made him one. His fissures seems to have healed completely though we are continuing with the medicines and sitz bath as advised. Another nice day.

215) Friday 3^rd July:   Today sessions are planned for evening but it was raining heavily so skipped. Manas did some cycling. After a long time we played uno. Played chess with him and lost which was after 2 months which means he is getting sharper. One more day passed by.

216) Saturday 4^th July: Another routine day, Manas wanted to eat fish so ordered one and made his fish curry for dinner. Manas did his stretches as usual.

217) Sunday 5^th July : Manas woke early as had his physio sessions. Today he did some more exercises including a small jog inside the house. Today banana flower dish was made which was nice. Watched Chak De India and Penalty movie. Made cheese potato wedges as snacks in evening. Another routine day.

218) Monday 6^th July : Manas routine is now coming back to normal, with physio sessions, on time lunch and dinner and undisturbed sleep. He has now started some strengthening exercise and apetite has also increased.

219) Tuesday 7^th July : After a long time the days are normal , touch wood and we have a predictable day. Made Noodles for him after a long time. Played chess and lost a game.

220) Wednesday 8^th July : Today he was craving for dahi kadi and pakoda which Shalini made for him for lunch. He has now started doing small jogs inside the house. We now have to get a cross trainer, checked with Decathlon and they said to check after 10^th. Night made red sauce pasta for him. Nice day

221) Thursday 9^th July: Today the sessions are in evenings so he woke up late and had a relaxed day. Today was south india menu for lunch and dinner his grandpa made Chole curry. After long time he spoke to his friend and was visibly very happy and excited, was so good to see his old self.

222) Friday 10^th July : Another routine day and little more run within the house. Dr Shobha called and said to get covid tests done before the PET Scan, hence decided to do on Sunday instead of Saturday.

223) Saturday 11^th July: Manas woke up late, made for his dry fish which he was asking for some time, turned out well. He had this week all 6 days of physio. Dr Shobha asked us to go early by 7 am to get the tests done as it gets crowded. Later in evening had light dinner and slept early.

224) Sunday 12^th July: Today is Kitna’s and Mami’s birthday. Morning wished Mami. The Alto car again did not start hence went in Innova. Reached hospital by 7.20 am, not much rush, got all our details enrolled. A lady ahead of us had a positive report and she had to go to MSMC to get admitted. Our tests got over by 9 am and then came home. Shalini made banana flower curry and small onion sambar. Evening made home made sauce and pizza. Manas did for the first time, full 7 days of physio stretches

225) Monday 13^th July : Got Manas covid reports and as expected it was negative. Ours we will get later in day. Dr Shobha asked us to reach early and take the front entrance as the emergency entrance is now for treating covid patients. Today no physio as it was raining at his part of town. Manas ate early and slept early tomorrow is a long day. Manas was cool and asking that his reports would all come clear.

226) Tuesday 14^th July : Morning we left by 6.45 am and reached by 7.15 am. Our covid reports were not ready but they allowed us. Manas was given an injection through a canola and after an hour taken for the scan. This was the same room where his PET scan was done on 5^th December 2019, there is a large photo of Satya Sai Baba and it was a emotional moment for me and Shalini as we waited for his scan. His scan was done around 8.45 am and it turned out fine. Dr Shobha had said it would be fine as the earlier scan had also ruled out any thing else but we wanted to be doubly sure. Later we went up to ground floor to get his blood test done. Poor guy had to be pricked thrice again as his vein was not found. We went to meet Dr Shobha who was very happy to see the report. She decided to do the LP and also the chemo of Mesna and cyclophosphomate. She said few more weeks and he has to bear it, there will be some headache and vomiting and in case of any temperature to bring him. Manas chemo go done and was asked to drink lot of water. He had chicken for lunch after a long time. We came home by 7 pm. We got our covid reports as well and was negative as expected.

227) Wednesday 15^th July : Manas woke up late, was bit tired. He did have nauseauting feeling in evening and at night threw up twice but was later fine. He had slight headache and applied amrutanjan cream and he felt better. Played chess with him after long time. No physio today. Today was the 10^th grade results and most of his friends have scored quite well, if he had given he would have also scored quite well but then there is always next time. Gave him GCSF injection.

228) Thursday 16^th July: He woke up early and had his physio exercises. A Covid case detected in our complex. He played chess with his grandpa and could finally defeat after 2 weeks of loosing. Evening I played a round with him. He slept in afternoon. Gave him GCSF injection. From tomorrow his Cytrabin injection starts. Night again he vomited and then felt better. Dr Shobha had told us that this will happen and he has to drink lot of water. Went to sleep a bit late.

229) Friday 17^th July : Manas woke up a bit late, his physio will come in evening. Gave him the Cytrabin injection. Afternoon he was bit tired and vomited a bit. Evening did his exercises. Had only curd rice as having other food makes him nauseating. He went to sleep in evening, hence slept late.

230) Saturday 18^th July : Another day of physio and cytrabin. Asked him to eat light so that the nauseating feeling wears down. Morning was rawa idly and lunch light pulav with curd. Manas was slightly better than yesterday. Night we all had curd rice and that seemed to help as he did not throw up.

231) Sunday 19^th July : Manas was feeling better and now back to routine. We ordered a cross trainer so that his knee and leg strengthening exercise can be started.

232 ) Monday 20^th July: Manas was back to routine and woke up early, got ready and his physio exercises started. Played a round of chess. Gave him GCSF injection

233) Tuesday 21^st July : It was raining and hence the physio did not come. The cross trainer arrived and was assembled. Manas had light lunch and dinner as next day is lumbar. Gave him GCSF

234) Wednesday 22^nd July: Morning we left around 10 am to hospital. Did his blood test and BP which came a bit on lower side. Went and met Dr Shobha she wanted an echo to be done again as BP showed low, got the echo done and it was at same level as 3 weeks back. She spoke to Dr Shashidhar the cardialogist and he said not to worry and continue with the medicines and drink lot of water. Manas last LP was done. We could get all done as day care and came home by 5 pm. Gave 6 MP and also GCSF. Next 4 days again Cyrabin injection. We met another kid who was 13 years old and spoke to their parents, he was to undergo BMT under Dr Sunil. Now next visit after 1 week on 29^th and also to show to cardialogist. Evening ate curd rice only. He threw up couple of times but later was fine.

235) Thursday 23^rd July: Manas woke up late, was little  better. Had light lunch of bisse belle bath. Evening he started with his cross trainer exercise was bit difficult but he could stand and start. Evening had chappati and his favourise baigan bartha. Morning gave him 1^st of Cytrabine injection and evening at 5 pm gave 6 MP.

236) Friday 24^th July : Manas had a routine day, his Cytrabine 2^nd injection was given. Evening his exercises was given and now cross training is also used. Full sit ups were also introduced which he finds a bit difficult to do as the muscles needs to be built. His nauseating senstation has also gone and he is settling down.

237) Saturday 25^th July: Manas woke at his usual time. Today the plan was to make Schezwan rice and decided to make egg fried schezwan rice. Manas spoke with his friends and many got their admissions and classes have also started. Manas decided that he will start his studies from 1^st of August. Evening decided to make aloo chat. Manas now could get on the cross trainer easily.

238) Sunday 26^th July :  Manas woke up late and Nagamani daughter Dr Swati came and checked his BP. It was normal. Dr Shobha said to continue to give his normal cytrabine dose and his last dose was give for this week. His favorite aloo paratha was made. Gave him an oil massage as his legs were paining. Evening was light dinner. Today 2 tablets of 6 MP was given.

239) Monday 27^th July :  Manas woke up early and got ready. Today he was given the next level exercises where he has to sit and get up. Was difficult but he could do with assistance. From today GCSF injections. Did not give him Emset or Pan as he is now not having any nauseating feeling. He has started preparing for his studies now and preparing a time table starting from Aug 1^st.

240) Tuesday 28^th July: Today the weather was gloomy with overcast skies, he woke up early and did his now new drill of exercises. Gave him GCSF, he felt sleepy and went to sleep, blame it on weather for a change. He wanted to learn baking hence we both made choclate cake from biscuits. Slowly learning new skills as well. Asked Dr Shoba do we get his pro BNP NT blood tests done, she asked to do that next week as Dr Shashiraj is there only on Thursday, so tomorrow is only CBC stat and meet her.

241) Wednesday 29^th July : Morning Manas woke up a bit early and we got ready. Had a heavy breakfast as his BP tends to show low. We did not the usual kit and only took his medicine and latest file. Dr Shobha had asked to get the cross match also done as she felt that usually his hameglobin drops and he may need a transfusion. This time Manas walked all the way which was a good sign of gaining confidence. Dr Shobha was very happy to see him walk and said it is inspiring. We did his blood test and as suspected his hameglobin was low and so was platlets. Dr Shobha asked for 2 blood transfusion and 6 counts of platets to be given. Due to covid there is shortages of blood at blood bank hence I went and gave blood. They wanted 3 more donors had spoken to Shalini, Sunita and Fabian but later as they could arrange did not want that. The transfusion was done and only 3 count of platlets could be arranged, which Dr Shobha said is fine. His 6 MP is now stopped and she asked for GCSF to be given for 4 days and then give Cytrabin and again GCSF so that his counts come to normal. She asked not to give strenuous exercises for few days. Gave GCSF at hospital itself. Manas wanted to eat fish hence ordered one so that tomorrow we plan to make that

242) Thursday 30^th July : Manas was his usual self, even earlier physically we couldn’t make out that his counts are low or not. The Physio came and gave milder exercises. Manas started reading and is getting ready to restart his studies. He spoke to his friends for a long time and did video call and was very happy. It was nice to see him the old way. The poor child had endured a lot and so many pricks, 2 more rounds of Cytrabin to go.Gave him GCSF injection. Evening made fish curry for him and he enjoyed it, given the foodie that he is.

243) Friday 31^st July: Another routine day, did his exercises and gave him GCSF. Today is Varmahalakshmi festival, this is usually celebrated with lot of devotion and fanfare and we invite many for the Haldi Kumkum. Manni also would celebrate this with lot of excitement. This year all festival seems to be celebrated in hearts only. Morning nice spread was prepared and evening after a long time Poori was made. The last day of the 8^th month is over today. 

Weekly Musings : Week 30 Change of Weather

Weekly Musings : Week 30 Change of Weather

The monsoons have started and it has started to rain. The usual Bangalore rains in evenings has started pouring accompanied by flooding. This week we had to rush to hospital as his BP was low and kept having temperature in range of 99-100 degrees. The last chemo drug has these side effects and like everything else we blamed the change of weather as well. A change in weather brings its own charm and mood, it is now a bit slow and gloomy as dark clouds assemble, a shower that cools down, the smell of the soil that makes you want to just lie somewhere cosy and just snuggle. Well while the weather brings floods and dark clouds they are required to rejuvenate the parched land, to help the shoots grow and bring in fresh air. The same change is what is happening as we wait to see the green shoots of freshness soon.

Weekly Musings : Week 29 Double Century

Weekly Musings : Week 29 Double Century

200 is a milestone well celebrated in cricket and is a double century. This week Manas completes his double century in terms of days since he was operated. Like in cricket, reaching a double century is like taking it patiently, letting go of many balls and not rush to complete it. It is purely endurance and hanging in there. It is no different here, we take one day at a time because while it is tiring and exhausting and there is a tendency to drop guard, we have no choice but to be patient. This week was a week where the counts went low and the side effects continued and the lingering question that when will this come to an end as it seems so near yet so far. This too shall pass as we just face one ball at a time.

Weekly Musings : Week 28 It is not about endurance

Weekly Musings : Week 28 It is not about endurance

This week ideally we should have been 2 weeks away from the regular chemo but after he was discharged on Monday we had to rush again to hospital on Wednesday and get him admitted as he developed fissures in his rectum. I was counting the number of weeks to go and Manas kept saying don’t keep predicting that only 3 more weeks are left as we are facing some setback or the other. It reminded me of how fragile the body and is and we cannot take anything for granted. This was the first time Manas had himself asked to be admitted to hospital and when we told Dr Shobha that normally he bears and has endurance this time he couldn’t. She replied and said his immunity is low and condition such that one should not bear it but come right away. Sometimes it is not about endurance but seeking help and assistance as we will definitely need extra help, irrespective of what situation one might be in. Seek help even if you can endure.

Weekly Musings : Week 27 One more hospital admission

Weekly Musings : Week 27 One more hospital admission

This week we had expected to be only day care chemo but due to Manas stomach ache he got admitted. It was another 4 days in now familiar setting of the hospital room and hospital food. We are hoping this is the last admission and doctor also said so. With so many visits the hospital and room has become like home with familiar settings and day continues as usual. Most of the staff are very familiar faces and it is like a routine activity. Something that we used to dred has now become comfortable settings where tests, reports, injections, fluids etc seems like having a routine meal. Reaching last leg of treatment while we count each day.

Daily Diary for month of June

183) Monday 1^st June : Today start of new month, Manas felt a bit better but still not fully enthusiastic. We did little stretches. He was not his active self, kept bit busy with xbox and then evening slept off. Fod which he normally relishes he was not so particular. Dexa is a strong steroid hence body and mind weakens. Overall the day just went by.

184) Tuesday 2^nd June : Manas woke up fine and was feeling better during the day. Evening we did the stretches and he was happy and slowly the dexa effect wearing down. Later in evening he started complaining of stomach pain and cramps, we asked Dr Shobha and she asked to give Pan and increase Mucaine Gel. At 10 pm his pain increased and we asked her and she asked us to give Metrogyl tablet. Sagar went to Appolo hospital and got the tablet. Manas had that and got some relief and later went to sleep. Had little curd rice.

185) Wednesday 3^rd June : Manas had a disturbed sleep and his pain was still there. Gave him Pan and also some hot ‘ajwain’ water, he felt little better and went back to sleep. He woke late around 11 am but still had the cramps. He did not feel like having lunch just had 3 spoons of curd rice and then gave him his medicines. He went back to sleep but his pains were intermittently there. Gave bath to him but he was tired and crying in pain and not letting me check his tummy. Dr Shobha called and asked us to bring him to hospital as she wanted to check and not take chances. We went to hospital around 5 pm and the duty Dr Mohan was there who knows his case well. He checked him and they gave antibiotic injection and also wanted to do a blood test before concluding. His blood tests came normal except drop in WBC which was expected. He said it is a normal acidity and changed his medicine. Also his afternoon Dex dose was stooped and said they will taper it down. Manas also felt much better and then we came home by 8 pm. Dr Shobha called and asked us to give a gcsf injection. Luckily Sagar could go to Fortis hospital and get one and gave the injection to Manas. Manas also felt better and ate 2 chappati and his favorite baingan bhartha. He still had slight pain but told him that his tests are normal and this will get over soon. He went to sleep early.

186) Thursday 4^th June : Manas woke up late but still had the cramps, gave him the medicines. He had some pasta for breakfast and then was tired and wanted to sleep. After sometime he woke up and said the pain is still there. The dexa of noon was stopped so said we will have to wait for it to show results. He was not hungry at all and skipped lunch. Around 2 pm he started crying  saying pain not bearable. We called Dr Shobha who asked us to bring to hospital and get him admitted as they would like to do ultrasound. We rushed to hospital, she was there and saw him. Fluids was given and blood taken for all the tests. We got him admitted. His pain had subsidized little only and he did not eat anything. He was asked not to eat anything solid. Later in night his blood reports came and it was clear. The ultrasound scan was done and that also showed cleared except for some gas formation. Manas went to sleep. He did not pass motion as had not eaten anything.

187) Friday 5^th June : Manas was tired and stomach pain had reduced considerably. I went home and got clothes and laptop. Dr Shobha came and said Dexa induces all these and only 2 doseages left. A GCSF injection was also given. She said he will be fully alright. His muscle has again become weak and asked him to walk. Manas was feeling low and said he couldn’t move his leg much, told him that his mind is making him anxious and nervous and he will be alight. Took him to loo but still he couldn’t pass motion. Gave him bath. Later he walked some few small rounds within the room itself. He did not have dinner and night again said leg not having strength and was wondering if he can speak. Spoke to him and said his mind is making him think like that due to steroids. Gave him some stretches. Kirubanidhi the physio also came and said that we need to some more strengthening. Gave electrol and coconut water and then Manas went to sleep.

188) Saturday 6^th June : Today is the 1^st death anniversary of ‘Manni’ my role model and dear mother. Manas woke up fresh, Dr Sunil and team came and saw him and said he is doing fine. The muscle go weak but that is temporary and asked him to do walking. His fluids were also stopped and asked for semi sold diet like khichdi be taken. Manas was able to pass motion today morning. Gave him bath and also made him walk the ward 2 rounds. He said he will prepare a time table and we set a target of running 10 km on 30^th Nov, that will

188) Saturday 6^th June : Today is the 1^st death anniversary of ‘Manni’ my role model and dear mother. Manas woke up fresh, Dr Sunil and team came and saw him and said he is doing fine. The muscle go weak but that is temporary and asked him to do walking. His fluids were also stopped and asked for semi sold diet like khichdi be taken. Manas was able to pass motion today morning. Gave him bath and also made him walk the ward 2 rounds. He said he will prepare a time table and we set a target of running 10 km on 30^th Nov, that will be 1 year since his operation.  Dr Shobha came and saw him and said he can have semi-solid food. He had ragi kanjee for breakfast. She said they will do a CBC and then discharge on Monday. His chemo may happen on Wednesday or Thursday. Evening we did stretches and some exercises. Manas had dal rice and then went to sleep.

189) Sunday 7^th June : Manas woke up late, he was feeling much better. Had semi solid breakfast of idly sambar. Dr Sharad Damodaran came and said his counts were low at .5 hence GCSF will be given and he will be discharged in a day or 2. Manas was feeling much better though his legs are still weak. Evening did walk within the room. He had soup and later dal rice. Went to sleep.

190) Monday 8^th June : Manas woke up early, Dr Sunil came and said counts bit low but will speak to Dr Shobha and may discharge. Later nurse came and said discharge planned and the chemo to be done on Thursday. He was asked to take gcsf injection. The Physio came and gave very good stretches and Manas felt better. His legs have become weak and could walk with help, will need some time to gain strength. I paid the bill as the insurance would take time and manas was getting impatient. Reached home by 8 pm. Shalini made khichidi for dinner.

191) Tuesday 9^th June : Manas was much better but leg still weak. Gave him Pan and other medicines. He could walk with help. Had rasam for lunch which he was missing. Kirubanidhi started coming from today and Manas could get some good stretches and physio, though it was painful Manas felt good. Later he did 2000 pedals as well. He had dinner. Complained of burning sensation when passing motion checked his rectum and there seems to be some kind of boil or growth.  Manas had medicines and went to sleep.

192) Wednesday 10^th June : Manas had pain in his anus and applied betadine cream. He had bath and gave his sitz bath. He had normal lunch but at noon his pain again increased. Took a photo and sent to Dr Shobha, she asked to apply the cream. Manas pain increased and he started crying and wanted to go to hospital which is unlike him as the pain was unbearable. Called the hospital and Dr Salman was there he asked to give Microgel and if pain persists asked to bring him to hospital. We rushed to hospital and they examined and applied a gel and gave antibiotic injection. Later in night the surgeon came and he examined and said looks like Fissure and it would have been caused earlier due to constipation or hard stool. Nor us or Manas recollected any such instance though I remember that his motion had delayed. They asked for gel to be applied and also give sitz bath be given where he sits in warm water instead of splashing the way I used to do. Manas had some relief. He had dinner and then went to sleep.  

193) Thursday 11^th June : Manas felt better and the surgeons came and examined. They suspect he would have had constipation in past and hard stool that would have led to so small wound which has now led to fissures. No need of any surgery but apply cream and do the sitz bath 3 times a day and it should heal on its own. Manas was given sitz bath and he could get relief. Dr Shobha was on leave but Dr Sunil and team came and examined. His counts are low as the wbc is fighting his infection. Manas felt better during the day and the creams and sitz bath helping. He was given pain killer injections and antibiotics. Asked to take Duphalac and avoid constipation.

194) Friday 12^th June : Manas was feeling much better and pain reduced to large extent. The swelling had reduced little but the inflammation reduced considerably. Dr Shobha came and checked and said it is last leg and need not worry. They may give vincristine and discharge him tomorrow. Manas did thrice sitz bath and also could walk around with help. He has now come back to his cheerful self but once a while goes silent. He had proper meal and passed motion twice due to Duphalac but was much better.

195) Saturday 13^th June : Manas was back to normal self. Dr Shobha came and saw him and said will give partial chemo as his counts are still only at 1 and will discharge. His fissure had also reduced and pain was less. His pain killers were stopped. Vincristine chemo was give and by noon he was discharged. We came home by 5 pm. Evening gave him sitz bath and he had his favourite tomato rice. Went to sleep early as the physio said he will come by 11 am the next day.

196) Sunday 14^th June : Manas woke early than routine, he had to rush to toilet as little more Duphalac was given. He was not comfortable with the pan and had to get a new steel tub for him to sit. He had lunch and Shalini tried litti-chokha dish which came out well. Later in day Sagar went and got the tub. Evening the Physio came and gave very good stretches. Did 4 times sitz bath. Gave him GCSF injection in morning as this has to be given for 3 days to increase his WBC counts.

197) Monday 15^th June :  Manas woke up early as the Physio was to come by 11 am. His pain had reduced and the fissure also has contracted. The Physio made him do some really tough stretches as his leg strength has to be built. The sitz bath was given 4 times a day and that gave relief to him. Gave him the gcsf injection. Night his favourite baingan bhartha was made.He was tired after the stretches and went to sleep early.

198) Tuesday 16^th June : Manas woke up early and got ready as well early. The Physio gave some real good stretches, while they were painful Manas is now able to regain some of his strength. Gave the last does of GCSF injection, his hands looked fine so his counts should have increased. His pain also has reduced and the 4 times a day sitz bath is helping. The last 7 months of his treatment some part or other of his body has undergone some suffering but he has borne it well. He had his favorite masala dosa for lunch. He did cycling as well. Being a foodie wanted to try new dish and Shalini made Gatthe ki subzi. He now has started helping with peeling vegetables and doing some side chores, to bring some variety to the monotony. Had a decent day and tomorrow is his follow up and hopefully the chemo should be done.

199) Wednesday 17^th June : Manas woke up early and got ready as well early. Had his medicines and left for hospital. We got his CBC Stat done. Dr Shobha checked his fissures and was happy it is healing. Manas counts were low it was .8 hence chemo postponed. Manas was bit low as he was confident it will be fine but his wbc must be fighting the infection. We came back home and also called the Physio to do the stretches. Day went as usual and he was asked to take 3 days GCSF and come on Saturday.

200) Thursday 18^th June:  Today is 200^th day, Manas woke as usual and had a normal routine day. His soya nuggets pulav was prepared and dosa for dinner. He had his gcsf. Later in night he had sweating and his temperate was hovering between 98.5 and 99. Spoke to Dr and she asked to give medicine and check after an hour. Manas himself did not feel any fever but temperature was 99. He slept early

201) Friday 19^th June: Manas had normal temperature but later had again increase. No headache or temperature. Dr Shoba said it is expected and could be due to Vitamin D deficiency as he has been at home only. Had gcsf injection and his normal stretches. Now his shoulder exercises are given. Another routine day

202) Saturday 20^th June: Manas woke early and we left for hospital. Mama & Mami came home. Manas counts were good and his chemo was given. His Vitamin D and calcium was low hence Shelcal and arise medicine prescribed. This is a short chemo that got done in 1 hour and we were back by 3 pm. Had lunch at home. Manas had some nauseauting which was expected. He had his stretches. Later in day was tired and went to sleep early.

203) Sunday 21^st June : Manas woke up early as today is Solar eclipse hence had breakfast by 10 am. Manas had bisse belle bath for lunch.  Evening did his stretches. Made corn-paneer cutlet for him.  A normal day.

204) Monday 22^nd June: Manas woke early and was ready. The physio came by 11.30 and he had good stretches. No major mdeicines except forcan and shelcal. A normal day

205) Tuesday 23^rd June: Manas had a normal day, his fissures have reduced substantially and no more pain. He could now walk with very little assistance thanks to the physio exercises.

206) Wednesday 24^th June: Manas got up early had his stretches. Today his gcsf injections was give, have to give for 3 days so that counts are fine. He slept in noon as wanted to see ManU match in night. Had dinner of kurma which Shalini had prepared. Saw the match and went to sleep late.

207) Thursday 25^th June : Morning Manas woke late as his stretches was planned in evening. Gave his GCSF injections and medicines. Evening manas did his stretches and later went to sleep. At around 7.30 pm his body was feeling warm and on checking tempreture it was 99. Shalini checked his BP and it was low at 90. Dr Shobha asked him to be brought to hospital. I spoke to her and she said the drug Doxorubocin can cause BP low and affect heart so she wants to do a echo and a doctor to see him. Manas started crying as he now hates going to hospital but we somehow convinced him. We left at 9.15 and reached by 10 pm. The Dr on duty examined him and felt his BP was fine, seems our machine shows incorrect. They could not do Echo as Covid clearance is required and at this odd hour not possible. So they asked me to get the medicines and gave him antibiotic. His vein was not found and later they used the port, this was a bit painful. Took blood for CBC, Renal, Liver and infection test. Couldn’t see him crying as he said he had enough and does not want to go through this. All got done by 2.30 am and we came home by 3.30. It had rained heavily and roads were flooded and so was Ranka Colony, luckily had taken Innova so could come in. Took him in wheelchair. Later he went to sleep by 4 am.

208) Friday 26^th June : Manas still had fever. Dr Shobha said his reports are fine and only hameglobin is low, they will give a blood transfusion like in Phase 2. Asked to give Dolo if it goes beyond 100 and also give Taxim O tablet. Gave Dolo to him and he felt better though it was weak. Had light lunch of rasam rice and again went to sleep. Evening he was much better and BP still showed 106 range but seems our machine is incorrect. Dr Shobha asked to come on Monday and give GCSF tomorrow as well. Gave him GCSF today. Later at night he had little vomiting but was later fine. Gave him Dolo and then he went to sleep. Dr Shobha said if the fever continues till Sunday she may admit him. Praying that the last leg of 3 weeks goes smoothly. 

209) Saturday 27^th June : Manas woke up late, he still had mild temperature 99 degree and gave him Dolo. Gave gcsf injection as well. The temperature was there couple of times hence had to give dolo thrice, this has been reduced from 4 times. He felt nauseauting and threw up twice. While his other reports came normal his hameglobin is low. Most of the day he took rest. Evening he watched his favourite Barcelona match and went to sleep around 11 pm. Gave him the weekly Vitamin-D tablet. 

210) Sunday 28^th June : Manas was much better did not give him Dolo, the Taxim O table helped in control. The BP still kept showing low so we asked Swati who is in her last year of MBBS to come and test the BP using manual BP machine. That showed normal and hence our machine seems to show a 10 count variation. Manas was feeling low as now he is tired of the hospital visits and was hoping that his chemo gets done. Dr Shobha said we will need to get a Covid test done and Echo as well. Skipped Physio as did not want to strain him. Slept early as next day is a long day.

211) Monday 29^th June: Manas woke early and got ready and we left by 9.30 am for hospital. There was traffic on road and we reached only by 10.30. Dr Shobha asked us to get the CBC, Cvoid test and Echo done and come to her. The Covid was the faster variant which you get report in 4 hours time. We got his CBC test done and later the Echo was done and then went for Covid test which was on another building. The Covid test took over 2 hours as it was a longer queue and bit disorganized. They said the report takes 8 hours hence spoke to Dr Shobha who said we can go home and come next day. Meanwhile we went and collected the CBC and Echo report. CBC was fine but the Echo showed some variations. Dr Shobha had told us that the drug Doxyrobocin is known to cause some heart side effects. We came home and Dr Shobha called and asked us to meet the Cardialogist next day and also get a blood test done. This was worrying and Manas lost his patience and started crying and feeling low. We tried to explain to him but he is the poor guy who is going through all this. The hospital visits, tests and pricks is taking a toll. Shalini also got worried but later she spoke to Dr Kannan, Dr Senthil and Dr Ramesh all our family friends who said this is expected not to worry. We explained to Manas. To cheer him up we made Maggie noodles which he has been craving for few months now. Manas was happy and later went to sleep as we had to repeat the process the next day as well. Told him Dalai Lama and why somethings are difficult in life.

212) Tuesday 30^th June: Morning Manas woke up and was feeling low. In the toilet he started crying and said he is now fed up. It was very painful and unbearable to see him break down. I also couldn’t control myself as have been keeping a stoic face for sometime. Seeing me cry he calmed down and said he will be brave. Later we had breakfast and again he was emotional and we all consoled him that things will be fine, have faith in god and doctors. We reached by 10.15 am, the Covid report was not ready. Dr Shobha asked us to meet Dr Shashiraj who is a paedetric cardiac specialist. We met him and he checked Manas and said looks fine but need a Pro BNP blood test to be done and come back with report. We did the blood test, which is another prick for Manas. We went to meet Dr Shobha who counselled Manas that he is doing exceptionally well. Many kids have high sugare, fits and other side effects that leads to a week of hospitalization and that too after the first dose whereas Manas has withstood 3 dosages which is remarkable. She said she may not do the last dose and hence said will give only Vincristine and will do a blood transfusion as well as his hameglobin is low and in past we had rushed for this. While Manas and Shalin went for the test I went and collected the blood report and showed to the cardiologist. He said report is fine and gave a medicine that needs to be taken for a  month and we come back again. He said this is expected and in couple of months they will stop this medicine. This was a big relief. Went and collected the Covid report which came negative as expected. Manas was very happy with this and the talk from Dr Shobha also helped him. Later his Vincristine chemo was given along with blood transfusion and we came home by 8.30 pm. Another long day but very fruitful as his chemo was done and we move to next step. Dr Shobha asked us to come on 14^th which is after 2 weeks and also get the PET Scan done. Now there are few milder chemo to be given and she increased the Cytrabin injections. Overall a good day.

Weekly Musings : Week 26 This Day 6 months Ago?

Weekly Musings : Week 26 This Day 6 months Ago?

week which is precisely on 30^th May, it will be six months since we were faced with this personal challenge. Over the last 6 months not just for us but world over people have been quarantined in their homes. Little did we realize how the journey would fare but thanks to the countless number of well wishers, we could reach this stage. We will be eternally grateful to many people and institutions. Every decade a time comes where world undergoes a radical change be it industrial, telecom, Internet etc a revolution had led to new world order. The Corona virus will lead to a new world order what that may be is difficult to predict but I am sure the focus will be towards humanity and compassion, towards nature and environment, towards caring and well being and towards needs rather than wants. Any bad brings about a new good and hope that new good is round the corner.

Weekly Musings : Week 25 How would Normal Day look like ?

Weekly Musings : Week 25 How would Normal Day look like ?

This week Manas had his strong chemo and still 5 more weeks to go. While entire world is in lockdown mode, the government had started opening up slowly and cautiously. Both of us were discussing that last 6 months has been confined to our home and were wondering how a normal day would look like. Manas is looking forward to going and playing in nets while he can eat in his favorite restaurant, I wanted to watch a good movie in a theater and maybe travel to some mountain. Things that were normal now seems to be a distant dream and the new normal is within the four walls of your home. While the countdown for his treatment is known we don’t know when there will be a cure for the Corona virus found and world will get back to the routine that we know.

Weekly Musings : Week 24 Stage 3 Starts

Weekly Musings : Week 24 Stage 3 Starts

This weeks starts his stage 3 of Chemo which is repeat of the first stage. This involves strong steroids and its accompanying side effects of mood swings, hair losses, weight gains etc. This time we are better prepared and aware. The chemo treatments are like learnings albeit a hard way where one has to go through it and experience and then understand and learn. In this journey one reaches to people who have had similar experiences, for us it is Mihir who is now 20 years old studying to be a doctor in Russia but had the exact same situation and other is Sudha whom we met in the chemo sessions who has a 2 year child and his chemo got over a few months back. An emotional support system gets created as we get ready to face stage 3 of treatment which will last for 4 weeks.

Weekly Musings : Week 23 Back to Routine

Weekly Musings : Week 23 Back to Routine

This was the first week where Manas did not have any chemo and most of his medicines are reduced. With no major medication and he gaining strength in his legs, the day has started becoming routine. Wake up in mornings and go about the daily schedules. We have been waiting for a routine day and it has started but ironically monotony leads to boredom. Manas is now missing outdoor but then entire world is at home. Manas decided to do some sketching and also started to pen his experience to bring in some variety. A week where routine seems to have set, something that we have been longing to see.

Weekly Musings : Week 22 Starting of Month 5

Weekly Musings : Week 22 Starting of Month 5

This week is the 150 day since Manas was operated and the 5^th month of his treatment begins. Didn’t realise the time, it is like trekking and one keeps walking not realizing how much distance one has covered. The destination is now visible and gives confidence that is just some more distance to cover and you will reach your peak. Things that just a few months back seemed so strenuous now feels normal. For Manas this is like a test match where one has to be patient, take one ball at a time and stay on crease. He has reached his 150 now and inching towards a double century.

Daily Diary for Month of May-2020

154) Friday 1^st May : Beginning of the 6^th month, Manas again vomited a bit in morning. He was doubtfult he may get discharge today. Dr Sunil came and said will check his levels and decide. Today he could pass motion and later he felt relieved. Afternoon continued to have curd rice only. The report came at 4 pm and was slightly on higher side and hence the discharge not planned for today. Manas was a bit low but was fine later. Had tomato soup in night and pulav. We played some uno and he watched his favourite Office series and played ludo with his friends. Today was technically a holiday so I also had a bit relaxed day, watch the movie Gumnami about Subhash Chandra Bose was an excellent watch.

155) Saturday 2^nd May: Manas woke up by 8.30 was feeling fresh, did his routine tasks. Dr Sunil came and said he looks fine and may initiate his discharge today. Manas had lunch of pasta as was bored of eating curd rice. His levels were fine and his discharge was initiated. With this chemo cycle Manas completes his 4 cycle of admission. The next chemo is the Day care chemo which will be for 4 weeks starting from 16^th May along with Echo report. We came home early by 8.30 pm, back to comfort of home and home food.

156) Sunday 3^rd May : Manas woke up late, now no more medicines other than Spectran alternate days and Pan for 3 days. Today is Kitna’s death anniversary as per tithi, didn’t realise how soon a year passed by. It seemed like yesterday when he was around, the frequent visits to hospitals have become familiar environments. Morning I did a small pooja as the actual shraddha can be done later once things settle down. Shalini had prepared his favourite items which I went and kept outside hoping that a crow will come and eat that. Manas had a good day as he enjoyed the feast. Am sure both Kitna and Mani are looking after us wherever they are. Miss them.

157) Monday 4^th May : Another routine day for Manas, did his stretches, played his games and started writing his book. Had his favourite masala dosa. Overall a normal routine day.

158) Tuesday 5^th May : Manas woke up leisurly, today no medicines at all. Evening did his stretches and he did 1000 rounds of cycling as well. Played chess with him and lost. Made my batata vada using the dosa pan.

159) Wednesday 6^th May: Another routine day but today Manas could not pass motion, gave him extra Dufalac. Only Septron medicine. Did stretches using a stronger band, he could do it though it was a bit painful later for him.

160) Thursday 7^th May: Today after 3 doses of Dufalac he could relieve himself. Evening did lighter stretches as he still had some pain. Played chess and again lost. A routine now setting in. Manas decided to sketch Virat Kohli and his pet dog Bruno that passed away, sketch came out nice.

161) Friday 8^th May : Slowly Manas is now coming back to his routine cycle of sleeping on time and waking up by 9 am. Now he is getting bored as it is becoming repetitive. He spent day the usual way and caught up with his friends. Yet to start writing on his book said not feeling like, looks like writers block. Another normal day.

162) Saturday 9^th May: Manas woke up a bit late but we played chess and kept busy. One more week and then his next cycle begins which will last for 4 weeks. Did more stretches today, his hip is yet to gain strength as while he can stand but when walking looses some of his balance. The orange teraband broke and hence using his blue stretch band.

163) Sunday 10^th May: Already 10 days of May month and time seems to fly in lock down. Today is mothers day, wished mami, Shalini and gauri. Morning decided to experiment with new breakfast and made a dosa of Bajra, besan, wheat and all vegetables, turned out well. Evening manas wanted to eat pasta and brownie, made that. Brownies used boost and it turned out ok. Manas could have a small piece only as the Boost was old opened pack. Did situps today and cycling as well to strengthen his muscles. Slept early.

164) Monday 11^th May : A routine schedule now. Shalini made vegan cheese and ice cream of banana both turned out good and Manas enjoyed it. Made him do the stretches and also sit ups.

165) Tuesday 12^th May: Today was pav bhaji day which Shalini prepared which he enjoyed a lot. Asked Dr Shobha when we should come and she asked to come on Friday instead of Saturday. Made pav for him.

166) Wednesday 13^th May: Today it is 1 year since Kitna passed away, we were discussing about how he would support me when I was Manas age. Morning Manas decided to walk on his own and slipped when coming from bathroom. Shouted at him as he needs to be careful as his hips are yet to gain full strength.

167) Thursday 14^th May: Tomorrow we have to visit Dr Shobha, she asked to come after having breakfast. We checked the schedule and 6 more weeks to go. Manas had gained weight

168) Friday 15^th May: Manas woke up by 7.45, we got ready and left by 8.40 and reached hospital by 9 am. The entry is very strict now, Dr Shobha came and saw him and happy with his progress. She wanted us to show his finger to Surgeon Dr Sanjay Rao , who now have all been shifted to make shift outside OPD. He saw the finger and said looks fine still got a swab test done, report will come after 48 hours. We did his CBC stat and Echo both of which were normal. His steroid phase starts with Dexa medicine. This will be like phase 1 where we he will feel very hungry and gain weight. Gave other 2 medicines as well which is Frocan and Rabicap which is to offset steroid effect. We came home by 2 pm. Next Friday his chemo injection will be given which will be for 4 weeks. After that 2 weeks more. Didn’t realise nearly six months near, it felt like first day when we had rushed to the hospital to show to Dr Thimmappa.

168) Saturday 16^th May: Today his Dexa phase starts. Manas woke up by 9.30 gave him Rabicap before breakfast and post that Dexa. Evening did good stretches. Made wheat pizza at home including tomato sauce. Manas did the bridges exercise on mat. He was feeling bit tired but later was fine.

169) Sunday 17^th May : Another day with steroids. Manas feels tired and drowsy hence end up sleeping in afternoons. Did light stretches. His favourite dosa and aloo paratha was made. Dexa causes some mood swings hence he was feeling a bit irritable but later was fine.

170) Monday 18^th May: Manas motion routine has changed and now it is not before noon he is able to relieve himself. Evening did extra one round of bridges exercises and his back was paining a bit, asked him to take rest as the Dexa is a strong steroid. Mami again had slight fever and she moved to Manni’s house. Everytime there is a shower / climate change she has fever. They had thought of going to Sunita’s house but decided not to as her area is in Red zone. Shalu made his favourite lauki kofta.

170) Tuesday 19^th May: The covid lockdown continues and now seems to be the new normal. It rained heavily and mami again had some fever. Not wanting to take risk, mama and mami went to Sunita house. Manas had another routine day and now getting more bored, need to find something else to keep interested. He started helping with housework and started with peeling pea pods, wants to help with kitchen work. Another day passed by.

171) Wednesday 20^th May: Today is our 19^th wedding anniversary. I could remember all the major events in our life since we met each other. Didn’t realise how quickly 19 years passed by. Shalu has been extremely supportive partner and soulmate and our world revolves around Manas. Today payasam was prepared and was like any routine day. Manas did little more stretches, spoke to Physio asking whether we need to buy the equipment, he wanted to see his progress before deciding. The first chemo will start on Friday and 5 more to go.

172) Thursday 21^st May : Another routine day, tomorrow his is chemo. Manas was feeling low as he now does not like the chemo process of prick and medicines. Told him it is matter of 6 more weeks and he would be done with this. Did stretches in evening and made pizza for him.

173) Friday 22^nd May: Morning Manas woke around 7.30 am and got ready by 9.30 to go to hospital. Today his chemo starts. We reached by 10.15, Dr Shobha saw him and was happy to see him walking. His CBC stat and blood sugar was tested and it was normal. His tissue swab report also came normal. His chemo was given which was of Lasparaganise which normally is a 4 days course but he was given one strong dosage and the other 2 was Vincristine and Doxorubicin. The chemo got done by 5 pm and Manas vomited which is the known side effect. The physio Kirubanidhi came and saw him and was happy with his progress, asked to buy a cross trainer and said he should be back to normal in 2 months time. Manas was very happy to hear this. Night he had severe headache and went to sleep without eating anything. He woke around 2 am and has little curd rice and gave him dexa medicine. This phase is like the first phase and will be a bit severe.

174) Saturday 23^rd May : Manas woke up by 10 am did not have headache but was feeling very tired.Gave me emset so that he does not feel nauseauting. After breakfast of sabidana khichidi gace him dolo and he felt better and went to sleep. Later in day he was feeling better though very tired and went to sleep. Evening had light roti sabji and then went to sleep. Did not do any stretches.

175) Sunday 24^th May:  Morning manas has slight headache and started crying as feeling very tired. This is another side effect of mood swings. After crying he felt better and then had breakfast and then went 

176) Monday 25^th May : Today was Manni’s death anniversary as per Hindu calendar, morning woke up early had bath and did the pooja. Made poori and sabji that Manni used to like. Manas was much better and no headache or vomiting though he was feeling tired. Evening did some stretches. The Dexa steroid does have strong effect on the body.

177) Tuesday 26^th May: Manas had a usual day but his BP show higher than normal. Asked Dr Shobha and she said it is becaue of the medicines hence asked to give 5 mg of Amlong and check his BP. Gave him the medicine and later checked the BP was still on higher side but Manas was his cheerful self. She said don’t worry. Skipped the stretches today as he was tired and went to sleep

178) Wednesday 27^th May: Manas was normal though BP continued to be on higher side. Evening did some stretches and also 5 situps and cycling. He was a bit irritable today as I accidently ended up stepping on his toes.  Shalini had made his favourite Bisse Bele Baath and he liked that. He went to sleep early.

179) Thursday 28^th May: Manas woke up late as was tired, he had breakfast and again went to sleep. He said he feels like not wanting to do anything. Dexa either leads to extreme hunger and energy or drains out, in his case it is the latter. Afternoon he wanted egg curry and he liked that. Tomorrow will be his 2^nd chemo out of the 4 and 5 more weeks to go.

180) Friday 29^th May : Morning Manas woke up by 8 am and we left for hospital by 9.30. He was worried whether it will be intense like last week. We checked his BP and it was on higher side, the nurse spoke to doctor and have him a capsule. We did his CBC stat and RBG and then went to 7^th floor to meet Dr Shobha. He did not want the port to be accessed as he thought his parameters may not be normal and he would end up with the port needle hence took the blood test via canola. His CBC stat was ok and hemoglobin had come down to 9, last week it was 12.50. His BP also came to normal and his chemo was started. Dr Shobha said this is expected and some get violent as well as the Dexa is a strong steroid. This chemo is a short one and got over in 1.50 hours. Manas was happy this did not turn out that intense. We came home and he was tired and took rest. Dr Shobha asked us to continue the stretches as the muscle will be weak in this phase. His counts may drop further in which case like last time he may be given blood transfusion. Evening he wanted his sambar and rice and made that. Went to sleep early.

181) Saturday 30^th May: Today will be exactly 6 months since Manas was operated and his treatment started. When we were told it will be a 6-7 month of chemo we were unsure how we will handle the journey but thankfully the power of good wishes of so many well wishers and friends helped us reach this stage. He is in his last chemo phase and has 5 more weeks to complete after which his maintenance phase of chemo starts. Counting every day as a blessing. Today manas wanted chole bhatura which Shalini made for him. I experimented with red pumpkin halwa using jaggery and it turned out good.

182) Sunday 31^st May : Manas coming back to normal though his mood swings come in spurts. He wasn’t feeling that hungry during lunch but later in evening ate something. Did some stretches but then got tired and went to sleep. Night made baked samosa which he liked. He was asking whether he is bearing it more and in comparison to my parents how is he faring. Told him that it is matter of 4 more weeks and this ordeal will get over, human body is known to endure based on conditions they are faced with and we don’t want him to suffer more. Later we played some Uno which was after nearly 2 weeks and then he went to sleep.

Weekly Musings : Week 21 When Negative is Positive

Weekly Musings : Week 21 When Negative is Positive

The Covid lockdown continues and world is confined to home. After having spent so much time in hospitals, the one thing we look forward to everytime is the results of the different tests be it blood, urine or stool. The one thing that we like to hear is that they are within normal limits and the tests have come negative. Even in present covid times the heartening statistics is to see number of people tested negative. While the whole immune system and power to heal comes from having a strong mind set and staying positive, the results have to be negative. While this may sound contradictory, the whole world revolves around opposite forces complementing each other. Black & White, no appreciation for ligh if there is no darkness, no good if there is no evil to contradict and like that only if one is positive the tests will be negative. Stay positive to come out negative.