2023 - The year I went under the (surgeon's) knife

Chronology of events and accompanying rough notes around my brain tumor surgery in Jan 2023 and experiences after the surgery...

7 Jan to 15 Jan 

Medical tests necessitated because of constant eye pain, eye tests one test after another, lucky discovery of my brain tumor through a CT scan of my sinus, contrast dye for MRI and Pet scan, the rat in HCG during my Pet scan, exhausting and nerve wracking medical tests with no diagnosis for eye issue, final review with neuro team, second opinion, Dr Medikeri desperately marketing, some marketing from Trustwell also, stressful decision to go for surgery, everyone rallying behind with prayers and best wishes, asked parents to come immediately after day one of tests. Eye pain prevented me from any active work, used time to soak in Bhagvad Gita, philosophy, spirituality, prayers. Also same a few YouTube videos on endoscopic surgery

Extremely good support from my newly joined company Innoviti Technologies, constant encouragement to stay strong and have faith, tide over challenges life throws at you 

16 Jan 

Pre-op tests, final decision on surgery date based on doctor's availability

17 Jan 

Nervous admission on the previous night, not very sound sleep, lot of palpable tension

18 Jan 

Moved into hospital gown, disposed sacred thread, wheeled into operating theater, Balu came at 7am. Balu and Mridula provided moral strength to Vidya outside the ot for five tense hours. Puja at guruvayoor and uppiliappan temple by Mridula's friend. Lot of prayers everywhere

Nervous wait in the preparation room, OT 4 I believe,Dr prahlad briefed me at 8.10am, chanted Purusha suktam and Sri suktam, wheeled into OT at 8.20am. Heard doctors saying 'ready to intubate', wondered what was there to incubate, hands held by the side of the stretcher and injected something, painful, saw the OT light, table, some more doctors, gas mask on my head, few drops of water, then blanked out. First time in my life under the surgeon's knife! God knows what the outcome will be... 

5 hours later, tapped out of unconsciousness by Dr Madhusudan and asked to tell my name, said surgery was successful, I asked him whether the tumor was sent to biopsy - a good sign of consciousness he said, recognised blurred outline of Vidya and then Mridula with her mask, they were relieved

Soon after, wheeled into ICU around 2pm. Stockings put, Given drops of salt water when oxygen mask was occasionally removed, like a parched man in a desert waiting for an oasis, all monitors wired up with constant beeping, mask taken out soon after but felt thirsty every minute, no more than few drops were given. Met mother and Vidya in ICU at 5pm during visiting hours. Pain started. Constant pricks for blood tests and continuous monitoring, First tender coconut water given at 4pm, didn't throw up like the adjacent bed patient, slowly fed more water, anesthesia effect waned, suddenly felt like choking, like swallowing steel wool, no space to breathe, doctors told it was because of intubation and sore throat, asked for water every 5 minutes, was given nebulization for some time to moisten my throat, the hell of a time, extremely cracked lips, dinner fed by nurse and housekeeping, they are godsend people, the frequent visit by doctors, no sleep, watching the digital clock through the night, one patient struggled with CPR and eventually died, one more critically ill patient brought to the same bed meeting the same fate after some more time amid incessant beeps of monitors and Muslim prayers by his bedside, chanting Vishnu Sahasranamam through the night gave me the strength to accept the harsh realities of life and also helped me tide over the inability to sleep, watched the detached nurses removing both the bodies very mechanically, ICU monitors blared through the night, relieved to see 6am in the clock

19 Jan 

Housekeeping gave cold wet tissue bath, mouth wash, adult diapers on, breakfast of yummy kichdi (had it on all subsequent days also), some exercises taught, waited to see Vidya and Mridula, still no clearance to shift to ward, waited for Dr Swati, urine control an issue, overheard Dr Praveen tell Dr Swati that the tumor was quite unexpected, seemed ominous.

Finally shifted to ward at 3pm, removed two IV lines and a deep artery blood pressure monitoring line (still healing with purple colour even after 3 weeks), catheter on, nose pack leaked, breathing through mouth a big deal but happy to be in general ward, heavy eyes from no sleep but welcome relief from the sound of ICU monitors, Vidya, Mridula, Shridula and Amma visited in ward. Could barely get up to talk to them, struggled to sleep, breathing through mouth. Hair all matted up like steel with medicines, blood etc hardened into the hair

Eating put pressure on nose pack, blood pressure through the nose pack, liquids exert more pressure than solids, value of the nose

20 Jan 

Bath with wet tissue, mouth wash, turning around with catheter quite painful, Catheter still on, breathing through mouth, nasal leak, walked around with catheter, urine control only through injection, no smell, doctor said bigger things to get out of the way, don't worry about smell, doctor visits, felt depressed, no sleep throughout the night, very thirsty and lot of disturbing feelings about life ahead, parents and Vidya very sad, showed and cried about my plight to guruvayoorappan. Navneeth visited along with others

Injection through new IV line stinging twice a day, till discharge

21 Jan

Miraculous turn of events today. 

Proper got water bath given by housekeeping, then Catheter removed, urine control only through medicines, measured input and output, doctor asked for throat inspection but nose pack suddenly removed. Very painful but worth it, doctors said they normally remove nose pack only after a week but mine had no internal leakage so they were ok removing it in three days, lunch with no nose pack, breathing through nose now, lunch and then blissful sleep for two hours amidst drilling sound, everyone very happy today, lips back to normal in two hours, doctors more positive today, did video call with appa, discharge postponed to Monday, walked without catheter, removed stockings, wore spectacles again

22 Jan

Proper brushing of teeth today, Idle day in the hospital, proper bath without catheter, no complaints though, started more lectures and spiritualism, thanks to everyone, walked around without catheter

23 Jan

Long wait till afternoon for doctor clearance for discharge. Much better looking today. Discharge finally at 8.30pm. reached home at 10pm but medicine drama ended only at 11.30pm

24 Jan to 2 Feb

Recovery slow, painful, nasal discharge and subsequent solidification, painful to talk or do do any facial movements, only soft food, urine control not good, no constipation, headache, no sleep, troubled thoughts about biopsy result, frequent urination at night, Gopu chittappa passed away, another painful nasal cleaning followed by thrice douching

Carefully avoided seasoning in kitchen, still 1 sneeze per day, no head bath, no blowing nose, no exposure to guests, even minimal with mask on when guests visited, stayed upstairs mostly, no bending over, no washing face, eye and head pain

3 Feb

Biopsy report today, couldn't interpret much, waited till 3pm to know really good news, nothing short of a miracle - all the doctors said, enjoyed the evening with bajji, successful outcome just a day prior to world cancer day - couldn't miss the irony and miracle , more spiritualism and thanks, lot of prayers at temples now to be done, excellent sleep

4 Feb

Head bath finally, allowed to bend over, still avoiding outside exposure, only moderate activity (missing yoga and gym), food back to normal, sugar under control, still no smell, very minimal medicine, slowly started medium hardness food

6 Feb

Only occasional facial pain, nasal discharge occasionally, urine still monitored, started prolactin tumor removal tablet, limping back to work remotely part time

11 Feb

Back to hospital for neurologist consultation for blurred vision, another VEP, nothing seen, doctor had a suspicion that blurred vision was triggered by a viral fever in early December. He recommended an expensive auto immune and immunology blood test to rule out any auto immune reaction. Another round of extremely painful nasal cleaning, cried several times when the doctor yanked out gooseberry sized flesh lumps from my nose. Asked to do douching 5 times a day…. Painful nose that hurt for several days and didn't make the wedding day a great evening

18 Feb

Exactly a month from surgery. Urine output very less in the day but made up at night. Now stopped minirin (4 days without minirin now), sodium levels good. Just monitoring urine input and output for a few more days. Only fasting sugar high. Some nagging headache. Another visit to Prabha eye clinic earlier in the week, one more field vision test, no issues, immunology blood test all good, no more action for eye issue. Final diagnosis for eye issue in December is suspected to be triggered from a viral fever in early December. Scary but most likely the right diagnosis, based on what I've heard in a few other cases known to our family. Mostly off all medicines now, only diabetes medication, some nerve healing medicines, and twice a week prolactin tablet. 5 times douching a pain but hardly any bloody discharge from nose. Still staying at home. Smell returning to about 60%. Able to do normal functions. Frequent headache still a pain. Panting after any activity. Forced breathing. Slept well mostly because of nerve healing tablet. No caution for sneezing. Started full time work

23 Feb

Another visit to the hospital for nasal cleaning. Met endocrinologist before that. No more tablet for urine control. It settled now, although it took longer than expected. Nose cleaning was a pain again, this time the doctor gave a nasty local anaesthesia through the nose that immediately went to the throat. A stinging burning feeling in the nose, throat and stomach for several hours that subsided only after 5 hours and some sleep back home. Didn't feel like eating anything for several hours. Doctor again pulled out lumps of flesh and wondered why my 5 times a day nasal wash had not flushed these out. Once anaesthesia effect wore out, terrible pain started and lasted two full days. Asked to come again for nasal cleaning in 2 weeks, God knows when this will end

6 Mar

Tested for all pituitary harmones. Thyroid over the high limit but prolactin comfortably within range. Waiting to see what the endocrinologist will say during the next visit, along with nasal cleaning. Fingers crossed

10 Mar

Visit to hospital today. Endocrinologist said everything looked good and need to consult her only after 2 months with MRI and a few other blood tests.

Nasal cleaning this time was least painful and the doctor said no more nasal cleaning needed. Asked to be cautious wearing mask and keeping blood sugar in control. 

Neuro surgeon Dr Praveen said I could resume exercises now

Post 10 Mar

Sense of smell took nearly 6 months after surgery to be fully restored. I had nearly given up on getting back my full sense of smell and had resigned to my fate...

Forward bending issues continue even into 2024...it completely disappears and then one bad day, it starts and persists for a few days. I have become accustomed to living with this, just like my diabetes.

Visitors at home started in April to enquire about my health and wish me well for a speedy recovery. Thanks to all my well-wishers.

In Oct 2024, I made a major decision to slow down in life - Requested my company to permanently work from home and only half time. Thanks to my company for supporting me on my requests. 

Things are limping back to normal - quarterly check-ins with Dr Swati continuing with no abnormal findings - she's a wonderful endocrinologist and a super human being! Annual MRI turned out good in Feb 2024 and I am continuing life as normal with twice-a-week tumor medicine...the tumor saga is now a distant memory...hopefully, it stays that way.