On Monday (28th November 2016), I had fluid drained from my thyroid at Sunway Medical Centre by endocrinologist, Dr. Wong Ming and her colleagues. The whole procedure costed me RM 1,558 in total. I had a similar thyroid cyst drained in 2012 at the US National Institute of Health in Bethesda, Maryland. It came back in 4 years, which did not surprise the doctor.
She chatted with my mother lightly and said that I was very brave. I will be seeing her again for follow ups in February so that she may monitor my thyroid for the long term.
I have been transferring my own medical records from my previous treatment centers to Keck School of Medicine gradually the past few months so that Dr Friedman and his colleagues can start managing health condition for the long term.
My last brain surgery to remove an acoustic neuroma at NIH made me feel strongly that I should go back to previous surgeons who are experts in NF treatment and would be able to take better care of me.
The post operative care I received at NIH after the recent acoustic neuroma surgery was regrettable and costly to me. In the long term 6 years ago, I decided to join the NF2 study at NIH for the medical benefit but the last post operative care made me realize that, I should take care of myself for the sake of my foundation project and I should not let my own health be compromised or sacrificed in any way.Because I felt that I needed to relief myself from the need to fund my own treatments in order to build a foundation to help other patients.
I decided to get my own treatments at Keck as well, or thought of partnering with them as a foundation, because they were also the doctors who know my medical history best. Plus, achieving 2 objectives at the same place would be most ideal.
This is going to be a leap of faith for me because it means that I need to pay my own treatments again. But it is a necessary leap because I have an important mission in life and to fulfill my mission I have to maintain my own quality of life. I have just written my 2nd book which I hope will earn me the means to pay for my treatments at Keck because the foundation will only subsidize treatment cost for everyone partially including myself. It would not be empowering otherwise.
So, work by faith, I shall and not by sight. Literally.
Since last Thursday, my home has been undergoing minor renovations. Two of our bedrooms needed to be tiled. This was a post WW2 house in PJ Old Town. My mother moved in when she was 7 years old. These rooms used to be carpeted sometime after she moved in. The carpets were taken out recently because it was too troublesome to clean. One of her sisters decided to put tiles recently and volunteered to pay for them. We have a regular air cond service man whom my mother asked to recommend a workman to lay the tiles for us. He and his staff turned out to be good hearted people who willingly moved out large furniture from my bedroom and carefully so, without first removing the things inside. Except for my bookshelf – they had to remove the books then carefully move the bookcase with its fragile glass doors out to the hallway. I was amazed by how strong these average sized Asian men were. My wardrobe was very big with a lot of heavy things inside makes me reconsider whether I want a white collar or blue collar man in my life.
Recently, a family member bought me a new laptop so I asked my friend, Elliot, to clean up the old one plus another old one I had, to be given away. After some deliberation, I remembered the African members of our church and decided to give them to help their situation.
I learned from Elliot 2 years ago about the Africans’ story as he personally helped them all these while. So called agents for Malaysia visited African countries and promised the students there that they could work in Malaysia under student visa. Many parts of Africa are impoverished. Their families sold everything to send their children here to study, intending to work at the same time to pay the rest of their tuition fees, their living costs and be able to send some money home. They were shocked later after arriving in Malaysia, to discover that they could not work on student visa.Having no money, they resorted to petty theft. Some of my church members reached out to them and learned about their predicament.
I told Elliot to give the laptops to them, not expecting anything in return but Elliot, being a nurturing leader, encouraged them to donate, so they collectively pulled RM400 for me.
Elliot came back and told me that they bought laptops. I was surprised so Elliot revealed further that he encouraged them to donate.
That made me smile. I always felt there was a fine line between business and charity.
Either way, the transaction was made out of love.
So last Thursday, I went to the nearby Assunta Hospital for a scheduled procedure. Dr Jeeta, the Gastro-intestinalogist trained in India, pulled out my Peg tube under local anesthesia.
My mother and I reached the hospital by 8.15am, paid the RM1,000 deposit and went upstairs to the ward. Nurses prepared me for the surgery pronto. Although it was just general anesthesia, they had to put an IV line into my right hand and wrapped a strap around my upper arm to monitor my blood pressure throughout the brief procedure and for a while more after that. I thought that I was fully awake but I did not know it when a nurse removed the mouth of tube that was pinned to my t-shirt. I felt the rather abrupt pulling of the tube from my stomach but did not feel any pain or nervousness. As if someone was just ruffling my mid riff for fun.
After the removal, I was taken to the day care ward where I spent resting for a few hours. The temporary bed I laid on since admission was not very comfortable but I beared with it telling myself it was just going to be a short while.
The several Malay, Indian and Chinese nurses who looked after me were nice. When I sat up in bed, someone came over right away. They patiently and gently traced alphabets on my palm to communicate with me and held me closely when taking me to the toilet knowing that I was deaf blind. They served me Milo, water and biscuits for lunch. My mother sat by my side all the time in the ward as nurses kept an eye on us.
Around 2pm Dr Jeeta came to the ward to look in on his patients. He told my mum to visit him anytime. My mother then asked him if he was in the hospital all the time. Dr Jeeta then said we can also visit him at home. The nurse who overheard laughed like hell.
Across from my bed a woman who just had cataract surgery rested. My mother walked over to chit chat with her but could not remember anything from their conversation when I asked her about it later.
A gauze and non-adhesive tape were placed over the hole in my abdomen after the tube removal and I was to go back to see Dr Jeeta once more in 7 days.