Weekly Musings : Week 9 Faith is God and Not Religion

Week 9: Faith is God & Not Religion
 

Our daily routines apart from the regular tests, medications, doctor visits and other aspects one important activity is praying. We had so many well wishers both directly as well as those who knew our dear friends and relatives who have been praying for Manas speedy recovery. Be it someone asking to chant a hymn or sholka or light a candle in a church or going to a dargah or just praying for his well beings it has been very over whelming and makes us extremely grateful. In todays polarized world when we pray to God, it is all about the faith that we have in someone beyond us and this power is our God. It is not religion that is God but the faith that we have in different forms, shapes, beliefs and actions that takes form of God and just like what my father in law said in Tamil : “ Nammibeke da Kadaval “ which literally means Faith is God.

Weekly Musings : Week 8 Service is Satisfying

Week 8: Service is Satisfying 

Our daily schedules are aligned with Manas, health and condition. His grandfather patiently goes out multiple times in a day to get things that he likes, his grand mom is busy making dishes that he loves, Shalini is happy ensuring he eats right, takes his medicines, ensure the rooms is very clean and checking that we don’t take it lightly while my duty revolves around giving him medicines, give him bath, walk him around and keep discussing cricket and master chef. Manas asked us isin’t it boring that all of us are stuck because of him, I told him I am enjoying it and likening it.  On introspection it is nothing but service and when one does it out of love, affection and expect nothing in return it is very satisfying no wonder so many people volunteer for actions closer to their heart, was wondering if the same behavior and approach is taken in a professional context where we do it more out of love and satisfaction rather than expecting kudos, positive feedback or some referrals in return, then that would be a truly satisfying service.

Weekly Musings : Week 7 Saying I Love You

Week 7: Saying I Love You

As Indian born in 70’s we have grown up in families that are not very expressive in their affection and love. Love for parents or children is demonstrated through silent support, preparing the dishes one loves, caring, ferrying them to classes or staying awake till you are home. Manas health condition and discussions with him brought out our trait to be more expressive and we have now started saying more of I love you to him and he also expresses the same. It re-enforces the bond and also coveys a positive emotion. Me, Shalini and her parents also keep saying this to him and vice versa. I now realise that how powerful these 3 words can mean and should be used more often not just with your children but also everyone and anyone you care about. Lots of love to each and everyone who have been silently supporting us and all the doctors, nurses, care takers who have been taking care of him and us. Love you all.

Weekly Musings Week 6: New year of Positivity

Week 6: New year of positivity

The beginning of new year 2020 is always wished as a Happy New Year, but happiness is an outcome, hence I would wish that the year is of positivity. Negative can be loss and positive is turning it around hence being positive is a conscious choice. I had always wanted to write about how one should put priorities in life and mine has been Health (own and loved one’s), relationships which is friends, relatives, stakeholders, learning focus on learning either through reading or seeing, Giving & Sharing which is helping someone either in thought or actions. The positive emotions of humanity, gratitude, talk and share,  sense of fulfillment, satisfaction etc. are all outcomes and wish everyone a year filled with these.

Daily Diary For month of January 2020

33) Wednesday 1^st January 2020 :  First day of the new year 2020, Manas called and wished us, had forgotten it was 1^st of the year. Manas felt better and could pass motion. He wanted to have butter chicken, made it for him and turned out quite nice. Post bath was feeling bit tired. Evening he was irritated and snapped at Shalini as she was asking about his food. Had light dinner and was happy that his medicine doses are reduced. 

34) Thursday 2^nd January : Manas had good sleep, gave him some stretches. He woke at 2 am and passed motion. He had lunch of rajma and chappati. Evening physio came and his immobilizer was removed and he was able to do some 5 squats. Was feeling weak, did not give Emset but gave later at night as he felt a bit nauseauting. I started coughing and hence stayed away from him and in my room. Checked his sugar and was 111.

35) Friday 3^rd January : I had cough so stayed away from him, Shalini did his activities. He was feeling weak and wanted to sleep. His mood was down and he kept asking why it happened to him. I started reading Yuvraj Singh autobiography and was inspiring. What Manas is facing is twice of what Yuvi went through, told him that and said he is fighter. Evening he cried stating that he cant bear the pain and wants break from Physio, told him will give that.  Later again he cried stating he was fine why he is undergoing this, Shalu and Mami couldn’t see his plight, I was strong as know this is just a passing phase. Told him that and he said he will fight this out, he wanted to know when he can get back to nets and play cricket told him June and he was fine. Asked him to visualize what he had said, where he is hitting a century and shows his back. Told him don’t worry he is my champion.

36) Saturday 4^th January : Brought him for the LP (Lumbar Puncture) procedure, when his BP was checked it came low 90. His CBC Stat also showed lower WBC which is expected but with low BP they did wanted to observe what was the cause. They had to prick him 8 times as couldn’t get blood, seemed to be dehydrated as he was on fasting for the LP. He was admitted again and blood test done to check if any infection is happening. His Amlog 5 mg tablet was stopped. Later in day his BP looked normal, but he started having slight cough, hence cough syrup given. He was also given antibiotics to avoid risking any infection. It was also decided to get the Chemoport done on Monday as well as the LP. Finished reading Yuvraj autobiography and could relate to it, told Manas his journey is twice as tough as Yubi’s which means he has to excel twice that much, Manshu was quite positive. Shalu spoke to another parent whose 4 year old son’s last chemo was ongoing and she was quite reassuring that it will get cured and it will be a tough challenge and have to be careful but finally cureable. Shalini was very upbeat post that. 

37) Sunday 5^th January : Morning Dr Shobha came and said all parameter looks fine, asked him to drink lot of water atleast 2 litres. Manas passed some motion, gave him bath. Struggled a bit to walk hence gave him some stretches and he got some relief. His BP was monitored every 2 hours and it was normal. The doctor came and explained about the chemoport procedure, evening he was taken for Ultrasound to find where the port will be inserted. Manas was cheerful and getting inspired by reading Yuvi autobiography. He was making plans about his playing cricket, meeting everyone who has helped and doing different city tours. 

38) Monday 6^th January :  Early morning gave manas bath, took his Pan medicine and then was on empty stomach. At 9.30 am they took him for the operation and 11 am he was moved to Paedetric ICU after the Chemoport was inserted and the LP was also done. He vomited a bit, even when in sedated stage he kept saying sorry and thank you, was thinking that even in this condition he was more concerned about this a lot to learn from him. He was later shifted to room. Had some headache but that went off, gave Lasik injection to pass Urine and he kept passing in small quantities. Had dinner of Pasta, gave the morning medicines and then went to sleep.

39) Tuesday 7^th January :  Morning he was feeling better, was passing urine every 2 hours which is a good sign. His blood report came as no infection which was a relief. The WBC count is low and will take some time hence his day 33 Chemo was moved to Friday. Asked to not put too much pressure on his right hand where the port has been inserted. Ate good breakfast.  Dr Shobha came and said we will discharge him and do his chemo on Friday 10^th Jan by when the WBC count should go up. Manas felt weak on his left knee. Insurance took time to clear and we reached home by 9 pm. Manas passed motion at night.

40) Wednesday 8^th January :  Already Day 40 since Manas was operated. Morning Manas woke bit late as was feeling tired.  Had breakfast of idly which he liked. Went back to sleep again. Gave him the injection to boost his WBC. Later gave him bath, his leg had less strength as no Physio for 4 days. He wanted to eat fish so made Pomfret, baked and then shallow fry, he liked it. He was complaining of pain in heel, evening the Physio came, his right leg was weak and he couldn’t drag much but with support he walked some distance. 

41) Thursday 9^th January : Manas couldn’t sleep much was bit restless. Morning was sweating a bit checked sugar it was 71, later gave him some sweet and breakfast it went to 130. Spoke to Dr Shobha she asked to get a urine test done hence took that and went to NH, met her she said it is normal and not to worry. Evening did rigorous Physio and Manas found it useful. He got his mood swings and started crying saying does not want to eat, later he was fine. Had light dinner and later passed motion and felt better. 

42) Friday 10^th January : Morning went for Manas chemo, his urine report was normal but the CBC showed low WBC count hence it was decided to move his chemo to Monday. The GCSF Injection was introduced which I can give at home for 3 days. Came home and realized that the chemoport was not flushed out hence went back to hospital to get it fixed. Manas was feeling low and sad which we are told is expected. Evening did not feel like having dinner and he slept off.

43) Saturday 11^th January : Early morning 2 am Manas had temperature, it was 98.60 but went upto 99.40, spoke to duty doctor he said if it goes beyond 99.50 and around 100 then to bring him to hospital. The 2 rounds to hospital may have tired and stressed Manas out. He also complained of pain in leg hence gave him the pain killer and gave lot of water. He passed urine few times and then his fever came down,  later he slept around  4 am. He was sweating as well hence did a sugar test and it came 73 which is normal on empty stomach. Slept after that and woke up at 9.30 am and was feeling better.  Morning gave him good bath, had good lunch and then went to sleep. Noon Mihir who himself had the exact same tumor when he was 16 years old gave him a call from Russia where he is currently pursuing medicine. It was very motivating speaking to him as he spoke of his experience on how to keep engaged, what to pursue and how it makes one stronger. Manas was very motivated and so was Shalini as he said some of the challenges are expected and will pass and not to worry, asked to keep engaged on open ended activities and also meet one or two friends. Evening did strenuous Physio could walk little better than yesterday. Had good dinner made his favourite Belgaum Kunda at home. Evening he played some FIFA games on X-Box with Sagar, passed some motion in evening and then went to sleep.

44) Sunday 12^th January : Manas had good sleep and was in better spirits. He got up early, passed  motion had good bath. Afternoon had his favorite lunch and then slept. Has slight wet cough and running nose. Evening did Physio but was tired. Happy that his medicine dosages had reduced, had dinner and slept early as tomorrow is an important day for his Jan Chemo. 

45) Monday 13^th January : Manas had erratic sleep and morning was tired. Went for Chemo did his blood test by WBC was 1.50 hence again Chemo postponed to Friday, Dr Shobha asked to give the GCSF injections for 3 days. Shalini was feeling low as this is the 3^rd time the chemo has got postponed, spoke to Sudha and Bharati and both said this is expected. Evening did good Physio and Manas walk was slightly better. Had dinner and went to sleep.

46) Tuesday 14^th January :  Manas had good sleep, was feeling fresh, had good bath and breakfast, gave him the GCSF injection. He wanted veg Biryani and Shalini made that. Slept for some time, saw the Ind-Aus match. Did the physio and he was able to do little better. Evening made my batata vada and moong vada which he liked. Stopped watching match after getting trashed by Aussies. Shalini shared the Astrologer in Pune to whom Vishal had shown and he said 6 months will be tough but he will come through and will start walking in 3 months. 

48) Thursday 16^th January : Manas had good sleep and was cheerful, his cough had reduced a bit. I did the Sudarshan Kriya and visualized that his WBC has gone up, had Gurudev, Baba, Kitna and Mani in dreams and blessing him. He ate well but was tired in afternoon hence went to sleep. Made him walk a bit but was tired. No Physio today. Evening made brinjal curry he did not fancy it much. Afternoon made him listen to Sri Sri Gurudev meditation and he found it soothing. Prayed in evening stating that the tomorrow WBC counts turn out good. He complained a bit about pain in tail bone and leg.

49) Friday 17^th January : Manas was fresh and work up at 8 am, passed motion and gave him good bath. He was cheerful. Went for the chemo and did his CBC Stat, it turned out good and was 24 jump from 1.50, looks like all the prayers worked. Hic Chemo port took time to flow and we got worried, they gave one more dose of sodium bi-carb and pushed the needle and it worked fine. His Hemoglobin was low 7.90 and a transfusion was thought but later postponed as had 2 chemo, said if he feels weak we would do the same. I think that can be managed with food. Later both his chemo was done and lot of fluids given. He got is favourite chicken Biryani and it was a relish. The neuro also came and saw and said as there is improvement we can review after 4 weeks no need of any medicines. Had dinner as well and came home. He was very happy and said one of the best days. India defeating Australia in Rajkot also added to his happiness. Today was Mama and Mami wedding anniversary, all celebrations postponed till Manas gets back to fully normal.

50) Saturday 18^th January : Today is 50^th Day after his operation, he was feeling much much better. Had good breakfast, gave him the Cytrabin injection, later we walked into the room. Did meditation listening to Gurudev’s teaching. Afternoon had good lunch, evening gave his 6MP dose of chemo medicines. Made Pav for him at home which turned out good, mada egg masala pav. Night had dosa. The Physio did good rigorous stretches and he was feeling fine and did 200 rounds of pedaling. Evening went to sleep early. Today was Ranka Day which we did not participate in so many years.

51) Sunday 19^th January : Manas woke early was a bit restless but later slept. Had breakfast and again went to sleep. Gave him good bath, today was Aud-India match in Blr hence he was keen to watch. Gave him the Cytrabin injection.Had lunch and was tired and went to sleep. Gave the 5 pm 6 MP medicine and later did Physio, today he was bit smooth walking. Got tired early,he wanted to have pizza hence made that turned out nice. Complained of bit pain in feet and tail bone said could be due to increase in WBC. Went to sleep early once match got over which India won comfortably.

52) Monday 20^th January : Manas was feeling uneasy and tired, woke up late. He had breakfast and lunch but then vomited. Post that felt some relief. Gave him Emset as that is a sos tablet in case of vomiting, he slept in afternoon. Evening did Physio and was able to walk a little better. Had dinner and slept off early, complained of slight headache. Passed little motion.

53) Tuesday 21^st January : Manas had good sleep and no nauseating feeling. Morning gave him bath, he wanted to eat fish curry made thai/Chinese style, hence made that and milder spicy, he liked that. Gave him emset and medicines, from today for 3 days GCSF injections to be given and gave him that. Evening did good physio walking and made garlic bread for him, was having some headache but then was fine. Evening he passed motion and felt relief. Watching Shark Tank on Netflix and is likening that.

54) Wednesday 22^nd January : Early morning Manshu was feeling low and having headache, spoke to Dr Shobha and she suggested we do a CBC and check for hameglobin and if low we need to do a transfusion, we decided to take him to NH itself. His hameglobin was just 4.70 and hence decided to give a transfusion. Dr Arjita said this is expected and normal. 2 Pouches of blood was given, took over 4 hours and later we came back home. Manas felt better and headache went off. The WBC showed 3 hence the GCSF was asked to be stopped. Asked to bring next day morning for one more transfusion. Manas had craving for south Indian wedding food hence Mami made an elaborate spread of rasam, sambhar, avial, applam, payasam, beans curry which we all relished (hogged in Manshu’s language).

55) Thursday 23^rd January : Manas had good sleep and was feeling much better. Had breakfast and went to hospital. Did Transfusion. Manas has been complaining of tail bone pain and Dr Shobha wanted to take Ortho opinion just to be sure, she felt as he has lost weight and hence less flesh there could cause the pain. We went to Dr Chandramouli the Ortho to whome we had shown initially and recommended by Dr Shobha as well. He saw all reports and asked for an X-Ray. Manas was getting tired and irritated as well but he could climb the 3 steps and lie down on the X-ray table. His Xray was shown to Dr and he said it looks like sprain nothing to worry and asked him to sit on cushion, no hot-cold pads or massages. He said we did the best thing by showing to Dr immediately and getting it operared and his progress is good. Many patients delay, wait for 3-4 opinions, do alternate medicines and it becomes too late and he is on right path. Hearing this was a good relief as the earlier apprehension kept coming to our minds. Manas also cried as he couldn’t bear the multiple shifting etc, but after hearing the Dr he was much fine.

56) Friday 24^th January : Today was Manas LP Chemo hence he had breakfast by 11 am and then went to hospital. We did the CBC stat but his WBC was again low at .8 hence the Chemo was postponed to Monday and the GCSF injection was given and I have to give that on sat and Sunday and come again on Monday. Evening did his physio was feeling bit pain but then was fine

57) Saturday 25^th January : Manas had good sleep and then did a round of walking into the hall and had breakfast. After that had bath and again walked, gave him medicines and gcsf injections. Evening again had physio and was better but a bit strenuous. Made Burrito for him and he liked it. Evening went to sleep but had pain in thighs, hence gave him good oil massage and he felt better. Later in night again woke up with pain in lower back, Dr Shobha had mentioned that when increase in WBC such pains may be experienced. Later went to sleep after giving a Dolo tablet.

58) Sunday 26^th January : Today is Republic Day, morning was feeling uneasy and felt nauseating, then he vomited. Later passed motion after 2 days and then felt better. Gave the gcsf injection. He had breakfast and then went to sleep as night did not have proper rest. Later he felt better and wanted dry chicken made for him for dinner. Evening he was fine.

59) Monday 27^th January :  Morning manas was feeling better, had breakfast and then went for his LP Chemo. His CBC stat was done while the WBC was 4 it was slightly lower but Dr Shobha said its fine to do the chemo. His LP was done, he was in sedation hence vomited the byle multiple times. Was having headache as well, later at around 7 pm he felt better, had some water. Night we was fine and had his favorite Tomato rice. From tomorrow we give the cytrabin injection for 4 days and then GCSF and then do the CBC.

60) Tuesday 28^th January : Manas had very good sleep and woke only once. Morning was fresh, had breakfast but was feeling tired, gave him the medicines and cytrabin injection. Late he went to sleep, gave him bath in late noon and made him do some stretches, he was feeling tired so skipped Physio. Evening made cheese sandwich for him, saw India-Aus under 19 quarterfinal which India won. Had dinner and went to sleep.

61) Wednesday 29^th January : Manas had good sleep, did his morning routine and had good bath. Gave him cytrabin injection, he had slight headache but slept for a while and was fine. Made his white sauce pasta for breakfast and aloo paratha for lunch. Saw the India – NZ match. Evening did good physio and could walk with the walker, 2 rounds. Overall he was feeling better albeit a bit tired.

62) Thursday 30^th January :  Manas had good sleep and feeling better. Gave him the injections and medicines and made him walk a round. He wanted to eat pav bhaji hence tried baking pav at home came out ok. Evening did good physio and also walked to hall for dinner. Overall he was felling better, had his medicines and wanted to sleep early.

63) Friday 31^st January : Manas had good sleep and was feeling better. Slowly settling down to routine, did 2 rounds walk and evening did 3 rounds and 300 pedals as well. His GCSF injection was given and favourite rasam and beans curry made. He wanted the brinjal curry which I made in evening for him. Watched master chef.