Weekly Musings : Week 5: Manas Wishlist (Visualization)

Week 5 when the chemo cycle had settled, the discussions hovered around what he would like to do once his Chemo is done and he is back to normal. The top of the wish list was to visit unique places like Mumbai, Amritsar, Indore and try the different street food. Told him about Bade Miyan and Bahghdadi in Mumbai. Next is of him going back to cricket and get a new set of kit. We spoke about how Yuvraj and others have excelled in life and how this phase will be transformational. We also visualized visiting each of the temple, church, mosque, gurudwara where  so many of our well wishers have prayed. Here the power of visualtion was helpful and it was just fun discussing these topics. Our once crazy plan of getting a food truck and doing a road trip came up where we merge Manas love for food and gratitude together. A nice feeling to think about it.

Weekly Musings : Week 4: Journey from Why Me to Why Not Me

When initially we were jolted  with the news that the tumor is malignant,  it was devastating. The immediate thought was why me, why him and why us. In 2019 just having recovered from loss of Kitna and Mani, this news was something that I was refusing to accept. As a strong believer of Karma and doing good to others least I expected was something like this. Even for Manshu who is known in school as a happy child and someone who is helpful and just cheerful we couldn’t believe god can make him through this. Once the tumor was removed we and so many of our well wishers were praying that it turns out to be just a tumor but then it turned out malignant.  The couple of days was very difficult but by then we got many folks sharing their stories and contacts. 

Anu said this type of malignant is cureable and can be managed. Meanwhile Shailesh gave reference of his friend Bharathi who’s son had exactly the same and same age and was fully treated. Dr Swati also told us that medical science has advanced and this is treatable and curable. The PET Scan came all clear and then the Lumbar Puncture was also clear which were all positive news. Slowly we could focus on the positive which was that firstly it got detected at right time, it is treatable and curable, Manas took it positively and started walking, the chemo was helping as he could pass urine and motion and many of our doctor friends also gave same message.  We realized that so many prayers are being answered be it chanting different Vedic chants or doing the Archana’s or prayers in Church and Masjids it dawned that God is there to make things right and make us stronger. We started counting our blessings and accepted that we were chosen for a purpose to make our family bond grow stronger and make us stronger as well. Amen

Weekly Musings : Week 3 Your Rupees 3 Crore Asset

Week 3: Your Rupees 3 Crore Asset

How much is our body worth came up when discussing with Yogesh my friend and he told about an article a doctor has written where our body is worth 3 crore rupees. In week one I realized how passing urine or motion itself is being so fortunate and if you convert the medical costs of replacing each of our body parts right from head to toe, it will be nothing shorts of multi crore. This is one invaluable asset that all of us as humans have and we take it for granted or value when we loose. Even for material things like a car or house we spend so much on Insurance, servicing and keeping it in good condition but hardly bother about the mind and body. Time to give it a price tag and then maybe we will value it more.

Weekly Musings : Week 2 God is Also Imperfect

Week 2: God is Also Imperfect

While week 1 was getting hang of what has hit us out of blue, week 2 was spent in the diagnosis and outcomes. This was also the time when we think why God chose us and why that too Manas to undergo such pain at this age. While so many people prayed to God, for us the doctors were the living form of that manifestation. When discussing with Dr Shobha, she said that God itself is imperfect because if he or she was so perfect we wouldn’t be having the miseries that we see around. This was an insightful thought. When my parents were unwell my I went with this thought that it is a great opportunity to serve them and repay for all that they had done for me, but when it came to my son, I concluded that My Son is My God and I have to serve him with utmost love and devotion.

Weekly Musings : Week 1 Can you pass urine

Week 1: Can you pass urine

Once Manas was shifted from the ICU, there was numbness in his legs, the tumor had compressed his nerves and hence no sensation to his legs. He was inserted a catheter to pass Urine. Doctors were worried that he needs to pass Urine so that the nerves can send the message. Inserting a catheter was a painful procedure and he would shout in pain. We were praying that he should be able to pass urine. This realization that something as insignificant and rudimentary as passing Urine can be such an important criterion on his recovery hit like a ton of bricks. We as people take so much for granted and are worried about career, achievements, material possessions that something as important as throwing waste from our body either as Urine or excreta is just assumed. Just shows us that we must be very grateful for the simple fact if we are able to pee and poo daily.

Daily Diary For month of December 2019

Took pain for granted

October : Manas has been complaining of back pain for some time, ignored it thinking that after playing BTR game it would have caused some stretch.

11^th to 15^th November : Manas continued to complain about pain and said unbearable. Took him to nearby physio Dr Akshaya, who said it was a spasm and then gave some massages. Did a 4 day course but that did not relive the pain.

16^th November : As the Physio did not help took him to an Ortho, Dr Chandramouli in BTM layout, who checked him and said it is a spasm pull. Gave a gel and a 5 day tablet course. Said to take the medicines and come after 3 weeks. Don’t take medicines even if pain remains as it will go away.

17^th November to 24^th November : Manas pain went away and he felt relived. Went to watch movie Bala as well.

The week that turned our world upside down

Monday 25^th November 2019 : Manas came from school and complained about numbness in leg. He said while playing football felt numb and he fell down. Seemed something odd, asked Shalini to speak to her friend Siva Adarsh who said better to ask a Neuro. Brushed that out as usual worrying nature of hers and said we will observe one more day

Tuesday 26^th November 2019 : Manas again said he is feeling numbness thought this is unsual and said will take him to see Dr Chandramouli again. Had spoken to DB who said it could be a pull which he had faced when we was young and asked not to rush into some surgery.

Wednesday 27^th November :  Took him to the Ortho at 4 pm, explained about the numbness, he asked to take an Xray and come. Took an Xray and went back, he say some small growth and asked to do a MRI and come with the report. At 8 pm went to Medilabs to get MRI done, Manas was unable to lie in the MRI machine and the technician asked to come next day with a painkiller injection or medicine. Spoke to Dr Chandramouli who said we can take the medicine and get the MRI done.

Thursday 28^th November :  Asked Manas to take leave and went at 8.30 am to the lab. Took the pain killer and did the MRI. The technician saw some growth and said that we need to do one contrast.  He saw the image and said looks like TB infection which I brushed aside as well. Thought initially that this is additional money making test but spoke to Dr Chandramouli who advised to do the contrast test. Got the tests done said report will come in evening. Evening 4.30 pm after the forecast call with Malhar took Manas who himself went and took the report. Took a photo of the report and sent to Sachin Kukarni who sent to his brother. Shalu joined us at Chandramouli clinic, showed him the MRI, he said there is a growth and beyond Ortho and said to take appointment with Neuro one D Sathish who sits in Fortis. Called Fortis for an appointment and they said he is available only on Tue & Thu. Spoke to Dr Chandramouli who spoke to him and he asked us to come to his clinic in JP Nagar. Went there and met him at 8 pm. He said there is a growth in spine and the immediate action is to do a surgery and remove that and relive the stress it is causing to the nerves that is sending the signal to the legs. Asked to speak to his assistant and said an operation can be planned on Tue / Wednesday. Had a call with Sachin who connected with his brother who said it looks serious and maybe a Chemo required as surgery looks difficult. When told doctor said surgery possible he said do it right away and don’t delay. Had an inclination of what it may be and had broken down in car itself, Manas and Shalu asked what’s the reason did not say anything. Later put this recommendation in my Club group and Rohit said don’t rush into any surgery without a second opinion and that too of either Dr Thimappa Hegde of Narayana Hrudyala or Dr Madhusudan first. Decided to take another option the next day. Put in my BMCC group and Apte called and said he will go and meet his surgeon in Hinduja and take opinion as well. That night was a difficult night.

Friday, 29^th November: Morning called Datta and explained to him. Meanwhile sent to Srikanta as well to take some reference. Spoke to Mama and Mami in Kolkatta and booked their ticket for Friday evening.  Remembered Anu and asked her if we can get Dr Hegde appointment. Tried calling NH direct number but couldn’t get through. Morning was difficult. Around 9.30 Anu called and asked us to come by 10.15 for the appointment. Me and Manshu rushed got ready and reached Muzumdar Shaw Medical Center by 10.30. We could meet Dr Hegde around 10.45 who reviewed the MRI and also made Manas walk on toes and heels. He suspected some pus or infection could be TB and said we can drain that out and do that operation. Said he can do it the next day itself which is Saturday. We decided to get him admitted right away. Got the admission done by 4 pm and moved to room. Evening Dr Komal Prasad and his team came and they said it looks like Tumor and not infection, did a CT scan and infection was ruled out. Said will be a couple of hours operation. Sagar also joined us and Manshu was his jolly self and got the blood tests done. Night could sleep some bit.

Saturday, 30^th November: Manshu was woken up at 6 am took bath and got ready. Went to the Operation Theater by 8 pm. Dr Hegde met us at 8.30 am and gave his phone number and said will keep updating. Said will be a 5-6 hour operation. The next few hours were excruciating. Around 12 pm Dr Hegde called and said the main tumor has been removed and remaining will take more 2 hours. Around 4 pm the operation got over and we were asked to come to the Pediatric ICU and met Dr Komal. He said some of the tumor had spread to the Thorrasic side which they did not remove. The tumor is sent for biopsy and we wait for the result. Asked his how did the tumor look and he said not good and suspected it to be malignant. This was heartbreaking. Me and Shalu couldn’t bear to see Manshu and he kept asking why we are crying and the operation is successful. Informed friends and well wishers praying that this is just a normal tumor. Met the Pathalogy lab and asked them to get the entire report ready.

Sunday 1^st December : Morning Manas was in PICU and later shifted to ward. The doctor said as the tumor had touched his nerves his leg will be weak and will take some time to gain strength. Around 11 am he was moved to private room. Manshu took rest but complained of pain in back and right shoulder.

Monday, 2^nd December : Met Dr Hedge in morning, they checked his leg strength and his right leg was weak and had very little sensation. Asked Manas to lift them and he could barely do so. Said lets start Physio. Manshu had pains in legs and back and couldn’t move. The cathader was put and he could pass some urine. Anitha had reached out to Swati who informed us to keep faith. Lots of friends and well wishers kept praying for his well being. Monday night Manas had unbearable pain, shouting in room, the doctors came and it was cramps in leg, gave some stretch and he was feeling fine. The Physio tried making him sit and he had lots of pain in back

Tuesday 3^rd December : Very little progress and we await the biopsy report. Anu had spoken to fast track the report. Manas leg showed very little improvement but he was not passing any motion nor urine. The cathader was removed and so was the injection points. Manshu couldn’t pass urine and was in tremendous pain. Told him about Sachin Apte and he wanted to speak to him. Spoke to Sachin and aked him to come and meet him. Night with some pain killer he was able to manage. Anu said she will fast track to get the report. Dr Shubha the Paedetric Oncologist met us and said they suspect it to be malignant and have given a steroid. The exact report will come Wednesday evening and she will tell us next steps. Twice the urine catheter was put which was painful.

Wednesday 4^th December : Manshu had some relief and could move little bit. The Physio did good stretches. By noon Sachin Apte came and he spoke about his journey and motivated Manas.  Deepa maam also came and encouraged him to get well soon. Anu came later in day and said though tumor is malignant it is in the treatable and cureable nature. This was B Lymphoblastic Lympoma Evening doctor Shobha met us and said same thing and wanted to do some PET and Bone Marrow scan so that we zero on the exact biopsy. She said lets start the treatment which we agreed. Manshu as given the first Chemo starting with Dexa and cyclopolhosmite. His pain killer was introduced and he had less pain and could sleep better. The nigh nurse Divya Bharati was extremely efficient and good care taker. Dr Swati Rajagopal who is Seshadri wife came and she was very helpful and could explain to Manas. She said this is right treatment and we must just proceed. Shared this with Dr Kannan who said the same. Good news was Manshu started passing normal urine without need of a cathader.

Thursday 5^th December : Morning on empty stomach took him for the PET Scan. Manas was in tremendous pain and getting dis oriented. He was making comments like beat me hard and fu….ng paining. The pain killer took some time to settle and then we was fine and then his PET scan was done. He was later taken to room and Dr Shobha came and saw him. Increased the pain killer dose. At 11 am he was taken for the bone marrow and LP tests. Me, Shalu, Sagar and Apte met Dr Shobha who explained the whole process, said it will be  a 1 year treatment but cureable. Stage 1 is 99.99% cureable and stage 4 80% hence don’t worry. His PET scan came clear and things look good. Asked us to keep the  house clean, use boiled food no salads or fruits that can cause infection and follow the Chemo protocol. All sounded positive and reassuring. Manas pain also subsided a lot and he was feeling better. He wanted to move to the 8^th floor and move to the Platinum wing and his luck got PA-3 upgraded room. Manas felt much better non pain ate well and went to sleep. Passed urine multiple times

Friday 6^th December : Morning Manshu was cheerful and Dr Hegde came and said his leg looks good but will take 2 weeks to be fully fine. He is passing urine which is a very good sign. Dr Shobha and her team came and met Manshu and all looked very good and gave positive vibes. His LP also came clean. The new room is bright and airy and Manshu is liking it. Did some good stretches but couldn’t stand yet and needs to spend some more time. Did not pass motion and given Dufalec

Saturday 7^th December :  Morning Dr Hegde came and as manas is not passing motion added more of Dufalce. Dr Shobha met and said the Chemoport can be added later. Manshu Physio done and he could sit on chair. A knee immobilizer was put and he was able to stand. Pain killer medicines was stopped and so was fluid. Manas asked to drink atleast 3 litres of water. My dear friends Yogesh, Dixit, Shailesh, Kunal and Sachin D came and spent day with us. Spoke to Bharathi who’s son had the exact same  problem 5 years back when he was in 10^th. She asked to be transparent with Manas  and continue his studies and connect with his friends.

Sunday 8^th December:  After 3 days Manas passed motion and he found relief. Complained of slight throat pain. Dr Shobha came on Sunday as well and said the Chemo will be done tomorrow. Gauri left for Indore. Kulkarni got the A/c and Geysor fixed at home.  Spoke to Manshu and explained that his tumor is malignant but not the dangerous type,he was cool and said if the doctors are confident why should he worry. Our kids teach us to be strong. Swami, Anand, Datta, Anu, Suma and Meera had come and Sridhar Shinu brother.

Monday 9^th December:  Manas was feeling fresh did not pass motion. Dr Sunil Bhat came with Dr 

Shobha and it was decided to put a chemoline in hand rather than in collar bone. Manas could walk only few steps but was able to sit for longer time on chair. He was taken on wheelchair and given a good hot bath and he felt fresh. Later his procedure was done to insert the chemoline. Dr Shobha explained the chemo cycle and what all is required to be done.

Tuesday 10^th December: Manas stitches were removed, he could walk few steps. Motion still did not pass, made him sit in Commode but still couldn’t pass, gave him a good bath. Apte taught him Shree Bhavani Ashtakam by Adi Shankracharya.Spoke to Bala about leave and increase in Insurance limit.

Wednesday 11^th December: Morning did not pass motion, was given tablets but still did pass. Made him walk some more distance. Gave good bath. Later in evening he was given antibiotic injection and then enema post which he passed motion. Gave simple dinner of rice. I gave up on eating choclates of any kind. Dr Shobha said his tumor in spine though rated as stage 3 is treated as stage 1. Shalu was bit worried but got clarified from Kalyani’s daughter and Shiva Adarsh. Manas had some cramps in leg due to walking.

Thursday 12^th December : Manas had oats porridge for breakfast felt better. Did physio, leg still having pains hence did not make him walk. Dr Sunil came and said he is doing fine. His next chemo and lumbar Puncture test will be done tomorrow.  Manas had good bath, did not pass motion, gave him light food. Complained of slight rib pain. Did good walking with support still strength to be gained in legs. Spoke to Malhar about 3 months absence. Pigeon nets put at both the houses. Sagar came to see. Spoke to Srikanta to stand for me, in parallel Shuchim was also discussed as an option.

Friday 13^th December:  Morning manas had slight cramp in right abdomen, doctors checked said due to no movement and non motion. He is intaking over 3 ltrs of water and passing same quantity of urine. His chemo was done along with chemo in LP. Had slight vomiting after chemo more due to excess eating, had pasta and juice along with one egg. Night he had very good sleep. Did very good walking and went outside. Motion not passed.

Saturday 14^th December : Had good sleep and was fresh. Sagar came and got home cooked tomato rice which we has been wanting. Increased dosage of durcolex still motion not passed. Did good walking outside of the ward. Saw Dr Kiran Muzumdar when she was on her rounds. Ordered his items and also booked Urban clap for house cleaning tomorrow.  Sagar took Innova, paid 2500 as parking.  Gave him good bath.

16) Sunday 15^th December :  Morning Dr Vasundhara came, no physio was done. Manas passed motion thrice and without difficulty, hence his bowels are now clean. Mini came to meet and gave him 2 books. Manas had decent sleep. Did not have bath gave wet wipes as did not want to risk asking him to stand without physio support. Apte mother spoke to and so did Panditrao kaku.

17) Monday 16^th December:  Morning Dr Sunil came and said he looks fine. His pink colour chemo Daunoraobicin, was done. Did not pass motion. Gave bath. Manas got discharged, was able to sit in wheel chair as well as in car. Got him home and he was happy. Had good dinner.

18) Tuesday 17^th December: Manas had good proper sleep. Room is cool and air purifier also working. Passing normal urine, motion not passed yet. Did good physio walking and also without belt and immobilizer.  The walker was not in right size hence returned, asked Sagar to get the blue teraband and walker from Jayanagar. Dr Swati asked to apply lacto calamine for his small rashes at night and T-bact cream after bath.

19) Wednesday 18^th December:  The lacto calamine helped and the rashes had reduced. Manas sat in potty chair and could pass very good motion, he felt good. Later with Mama’s support he was able to sit in bathroom and had a good Dettol bath. Applied the betanol lotion in anus. Had good lunch. Evening did excellent physio and did 2 rounds of walking. I started doing core workout and Sudarshan Kriya.

20) Thursday 19^th December :  Manas coulnt sleep well, as was feeling heavy in stomach, had eaten little more. Morning gave him bath later in day passed good motion and felt better. Evening could do smooth walking. Could hold him and take him for bath. Finding difficulty walking backwards but slowly gaining confidence. He is getting mentally much stronger and inspiration for me and Shalini.

21) Friday 20^th December :  Manas had very good sleep and so did I. Morning passed potion normally. Had good lunch. Evening did much easy walk and could go to toilet as well. Sent video to Dr Thimappa Hegde and he was pleased with his progress. Have to do more walking in mornings. Ordered chicken for his lunch tomorrow. Did meditation.

22) Saturday 21^st December:  Manas had good sleep, passed motion in evening. Made chicken for him which we was asking for some time, he liked it and could see the smile on his face. He informed his friends that he had stage 1 back cancer, was cool that he is not worried. Installed xbox of Sagar. Did much smoother walking asked to walk in mornings as well.

23) Sunday 22^nd December : Manas had good sleep,  passed motion in morning seems to be coming back to normal. Gave good bath and did 2 rounds of walking on his own which is a good development. Evening did physio walk. Made pasta for him. Spoke to Siddhant’s mom who is a doctor and pune, she said this is fine and the chemo cycles will be lesser.

24) Monday 23^rd December :  Morning 7.30 am had breakfast of upma and went for his follow up chemo. His blood test was done and sugar was lower at 59, hence his chemo was started  late and asked to admit for a day to observe. Checked with Dr Swati and Dr Kannan they said as he had eaten early previous day it could be the reason, asked him to eat at regular intervals. Finished his Chemo and then moved to room PB6. Manshu was unhappy but later was fine. Some hair fall started. Did not do physio

25) Tuesday 24^th December : Manshu sugars were normal. Dr Sunil came and he said he is fine. Got barber to shave his head to avoid hair fall. Small prickly heat on head gave a cream to be applied. Insurance clearance took time, did not do Physio came home by 9.30 pm. Walked to toilet and did motion. Gave good bath as well.

26) Wednesday 25^th December: Morning had milk and then passed good motion. Slowly normal motion coming back. Evening Kirupanidhi did the physio and he could walk. Manas was feeling a bit low. Bought glucolemeter, checked his sugar was in range in evening. I went and got my head also shaved.

27) Thursday 26^th December : Manas did not pass motion, was feeling bit heavy. He Is getting bored and asking that he wants to be the normal self, explained the chemo cycles. Had good dinner, Physio did not come hence made him walk and he did fine. At night he said that Australian cricketer Mathew Wade who is left handed batsman had testicular cancer when he was 16 years old.

28) Friday 27^th December:  Morning Manas passed some motion was complaining of cramps but post motion he felt better. Checked sugar before lunch was 92. Made his favorite roll using paneer and other vegetables and made sauce at home, he liked it. Evening was feeling heavy due to heavy lunch, did little vomiting. Made him walk 2 rounds which was much better and did some cycling as well. Was feeling tired hence slept in evening. His next chemo scheduled on Tuesday 31st December

29) Saturday 28^th December : Manas had good sleep. He could pass motion quite well. Made egg sandwich for breakfast. Was feeling nauseating  during lunch, slept for some time, gave him Emset tablet, felt better and had lunch. Could make him walk and do the cycling. Evening did 2 rounds of walking and cycling 1000 rounds. Evening wanted baigan bhartha for dinner.

30) Sunday 29^th December : Manas had good sleep, doctor advised to give him Emset tablet for 5 days to over come his nauseauting feeling. Did not pass motion. Morning went for my mothers 6 month Shraddha function. Manas had proper lunch, did cycling. Was able to do the physio walk without the immobilizer. Asked Dr Swati about reason for numbness after operation and she gave same update that if the operation had not been performed it would have let to paralysis, thank god that we could get it operated on time.

31) Monday 30^th December : The chemo  was postponed to 31^st as Dr Shobha is on leave. Today is exactly a month since he was operated and a month flew by. He passed normal motion and had good lunch. Did sugar check post breakfast and was 154. He did 1000 rounds of cycling. In evening his immobilizer was removed and he did 2 rounds of walking which is a good sign. I have slight running nose and Dr Swati asked me to take Allegera which is helping. Evening he was feeling tired due to walking and hence asked to take rest.

32) Tuesday 31st December : The last day of  a very tumultuous year, morning was his last Chemo for the month. His parameters were normal but his pirck-line through which chemo has to be given was blocked. The nurses tried but looked like it was clogged hence they removed it off. The Chemo was administered though canola on hand. Manas was fine with the injection option. Doctors said there is another LP chemo on 4^th Jan and we can decide what to do next. His Predinisolone doses was reduced and will be stopped after 9 days. Showed to Dr Komal Prasad as well and his Tragbantin and Strocit was stopped and instead only morning new medicine Nuhenz was introduced. It is more to give strength to nerves. Manas was overall fine and happy getting discharged on same day which was biggest concern. Evening had good dinner and went to sleep. We also slept early as had woken up early to go for the Chemo. As the doctor said hope 2019 last day is end of all that was negative and 2020 ushers a new year of positivity.