At the end of last month, I needed to buy something from Amway to fulfill the monthly 250pv requirement before we could receive that month’s bonus due to us so I browsed the Amway website searching for something that I might need. That’s when I came across the Floor Shine Floor Cleaner. I was drawn to it’s anti-bacterial property.

I have always disagreed with mom on keeping the animals indoors because I believe that they bring in bacteria that stick onto everything they set themselves on. Whenever I grew frustrated by the floor’s stickiness and spot a stray cat with infection sitting around, I’d become impatient and want to live apart from my parents. But ever since a blog reader pointed out that Mom’s obsession with these cats might have to do with how she feels, I decided to tackle the problem instead of wallowing in bitterness.

I bought the Floor Shine Floor Cleaner for mom, and she has been using it ever since. Mom is very happy by the results and said that I should have bought it sooner. She is delighted to mop the floor now. Previously, she loathed the chore. The Floor Shine Floor Cleaner makes our floor feel smooth to walk on when it used to feel rough no matter how many times it was mopped. The kitchen no longer feels greasy to walk on. It also takes away the smell of cats and dogs.

I feel less stressed up too when it feels good to walk around without the bad smell of stray animals.

As you can tell from Dr. Lekovic’s e-mail to me, the surgeons at HEI would review my recent MRIs at conference from time to time on their own accord and consider my every course of treatment agaiust my genetic disorder as a whole. They take my entire lifespan into account while deciding the best course of treatment. Their concern is not just to provide me with temporary relief but to maintain the quality of my whole life.

I said before that by going to HEI for surgery, I am doing it for my parents too. Because I have seen their reactions to Aunt Ivy’s healthcare when her cancer entered the terminal stage. It was very harsh on my parents and I do not want them to go through it again.

We may need to carry books and tees today. But with poor medical treatments and management, they might need to carry me instead.

My parents are always at the back of my mind. When I found out that there was a tumor impeding my only usable optic nerve in 2007, I feared for the worst and appointed Rockwills Trustees to manage my healthcare finances so that my parents will not be implicated should I become unable to take care of myself. At the same time, I also wrote my Will.

By switching to surgeons who are unfamiliar with my case history, the long-term cost may far exceed the price of doing each surgery at HEI.

It’s a blessing when we can work.

For many years after her demise, I didn’t know what took Aunt Ivy’s life or why did her body deteriorate the way it did. Nobody spoke of the reason or what her doctors said. My parents did not know anything at that time but to go along with the flow.

All the missing pieces fell into place when I saw Dr. Ng’s name. There could only be one reason why someone whose cancer went into remission need to see a Neurosurgeon 10 years later – metastasis. They say Aunt Ivy had ‘nose cancer’ and now we know that she saw a Neurosurgeon before her death. It means her cancer cells spread to the brain. This was the last stage of cancer. It was terminal. We can know that cancer cells have metastasized to the brain by performing a simple MRI from several months to years before the patient dies. This means they probably knew that Aunt Ivy was going to die very earlier on. But why were my parents not informed so? I am sure that if someone explained to my parents about the imminent death, they would have made Aunt Ivy’s needs their priority and sacrifice their own needs too.

As far as I remember, somebody took control of Aunt Ivy’s finances the first time she was admitted to SJMC in 1999. Aunt Ivy was the person who sent me to ballet lessons and anything that I wanted to learn. While Aunt Ivy was in hospital, the person who took over her finances told me that all these must stop because Aunt Ivy was ill. I accepted it because I could see that Aunt Ivy wasn’t feeling well.

Soon, Aunt Ivy was discharged and sent home – the home that we still live in. She had always lived with us.

Aunt Ivy bought this house that we live in more than 10 years before my parents were married. When Dad suffered a brain hemorrhage and was in a coma for one month when I was 3 years old, Aunt Ivy mortgaged the house to pay his medical bills. Aunt Ivy cared a great deal about Dad. After his stroke, Dad became dependent and Aunty Ivy took care of his many needs. That includes my upbringing too.

Naturally, it was very hard on my parents when her cancer came back. To make things worse, nobody explained to them that Aunt Ivy’s cancer had entered the terminal stage and what they should prepare themselves for. Later, we did not even receive a copy of her death certificate.

Without a clue about what was going on, my parents were criticized and insulted. Naturally, my parents also reacted to these attacks with resentment and anger.

They really didn’t know anything. Even I didn’t know.

Aunt Ivy lived for another two years until her demise in mid-2001. Her wake and funeral was held over two short days at home before she was cremated. Right after she was cremated, an entourage of aunties packed themselves into Aunt Ivy’s bedroom and rummaged through her belongings claiming to be helping us clear her things. My dad was furious. He felt it was too much of these people to be discarding Aunt Ivy’s belongings on the day of her funeral.

That year was 2001. In 2005, we received a letter from a lawyer’s office. Someone sought to apply for joint-administration to the house that we live in. The house deed was still under Aunt Ivy’s name. Before the house can be sold, the name on the deed must be transferred to everyone who has a legal right to inherit the house. Not even a single name can be left out unless the party gives up his or her share in writing. The person who hired a lawyer to seek a joint-administration was not my dad. In fact, he is adamant to never move from this house and would rather die with it. Ironically, the appointed lawyer was Aunt Ivy’s friend.

That year was 2005. I had just lost my residual hearing and needed to start raising funds for surgery. The lawyer’s letter came as a threat to my family’s harmony at a time when I needed help most so I sought assistance from my friend Cordy who has a degree in law. Cordy sought the advise of her friends who are practicing lawyers. With their advice, Dad and I went to obtain a caviet over the house so that no one could touch it without my dad’s consent.

My parents maintained that someone has been trying to take advantage of us all these years. I took their words with a pinch of salt because I didn’t believe people could be so mean. I told myself that my parents were over-reacting.

But I also didn’t believe what people said about my parents. After I was diagnosed with NF in 2002, someone would call me up and speak ill of my mom. I knew enough to shut off my mind and not hear a word. Because Mom had warned me that nobody should insult your mother to you. Anyone who does that is malicious. That’s exactly what happened to her eldest brother who became resentful and abusive towards my maternal grandmother. I have witnessed his abuses and so I believed mom’s warnings were true.

My parents are not very educated so it is easy to mislead them. To frame someone, we only have to aggravate them before they say or do things out of anger to give you enough ammunition.

My parents were furious by what these people did when Aunt Ivy fell ill and the things they said out of anger were enough ammunition for some people to speak ill of them within the extended family.

As you can tell from my past, it will really mean a lot to my parents when I can be treated by my HEI surgeons who would go out of their way to help me. In America, everything requires due process. Every detail of my healthcare is documented in black and white.

I have also appointed Rockwills Trustees to manage my healthcare finances because of my past experiences.

I may not always agree with my parents and I can be unhappy with them too. But they are still my parents and I will do anything to protect them.

I thought that I will never know who was right or who was wrong, until I saw that card and realized that Aunt Ivy’s cancer became terminal while my parents were ill-informed.

This was a basic exercise that has become a challenge to me. After several rounds of trying to walk this way, my heart nearly thumped itself out of my chest. My right leg could no longer do it properly. I can never point my right toe anymore. Being reminded of the things I have lost since my first spine surgery put me at the brink of tears.

Surgeons at the Kuala Lumpur General Hospital removed several tumors along my spinal cord in 2002. My diagnosis was delayed for three years so by the time I went into that surgery, I could hardly walk and needed to use the wheelchair. After surgery, I could sit, stand, and walk again with intensive physiotherapy. It was a big blessing considering that we were terribly late to deal with these tumors.

Surgeons managed to remove the concerned tumors but they scarred the involved and adjacent nerves especially those that control my right leg.

I took some photos of my feet to show you what damages to spinal nerves can do in the least.

As a result of these damages, I can no longer:-

1. Bend my right knee more than 45 degrees while standing up.
2. I can no longer squat properly.
3. I can no longer bend my knees to pick things up from the ground and have to bend my upper body down instead.
4. I can no longer jump.
5. I can no longer run.

We are now raising funds to remove tumors at my brachial plexus by my surgeons in Los Angeles. I chose them to have the highest chance of preserving my right hand’s function. Imagine if the above damages happen to nerves controlling my right hand while I am right handed. It means that I would not be able to hold a pen, carry things or type well anymore. That’s just the least of all possible complications from this surgery. I have had seven surgeries with my surgeons in L.A. with outstanding results so I know by heart that they will do their best to avoid damaging nerves.

I hope that people will believe me on how important this next surgery is.

The reason I asked Kenrick to dinner was because I wanted to try being relax and not so cooped up in the presence of a male friend. Kenrick as I remembered him always made me giggle. But when we parted after dinner last night. I also remembered that Kenrick has changed over the last two years which I knew but forgot. Kenrick in my memory was still 17 years old. My memory of him was six years outdated.

I didn’t tell Kenrick the whole reason for wanting to have dinner with him or he might not have come. It has to do with another friend of mine. Tiam Loong seemed more serious after I came back from surgery in December last year. It was quite shocking how a person’s demeanor could change so much over my two weeks of absence. I could not help being self-conscious and suffered myself to wonder if I had said or done anything that caused him to change. Since I tend to have a serious demeanor myself, I feared that people around me might also be changing their demeanor to adapt. In that case, it might mean that I make them feel cooped up.

But after meeting Kenrick, I could see that Tiam Loong isn’t exactly more serious. The better word would be ’matured’. At least, he is not grumpy.

A saying comes to mind. When we perceive something as bad, remember it could be worse!

I was reminded of a scene from my early childhood. My cousin sister Mui Quan was carrying me in her arms. We were in a hospital ward. There was a bed in the ward but I could not see who was lying there. Mui Quan stood about four feet away from the bed. I don’t remember hearing anyone speak. I had no clue about what was going on.

Mom left me to be cared for by my maternal grandmother during the one month dad was in a coma. At grandma’s place, I didn’t know why I had to stay there but I liked being with grandma.

When Mom brought me back home, dad would not tell me bedtime stories anymore. He changed into a completely different person, lethargic and apathetic.

When I woke up from my sleep this morning, I knew that I must hang up the OYA poster. If dad points it out to visitors the way he does to my AYA Dream Malaysia certificate, let him. I am probably all he has.

I will also frame up the OYA certificate and hang it next to the AYA Dream Malaysia certificate, and I will buy a glass cabinet to display my plagues in the living room.

Dad is very old. He will be 68 years old this August. When an old man like him who is a little senile shows off his daughter, I believe no one will fault him for it.

Maybe this will help to restore his self-esteem and won’t release his bitterness at mom by shouting at her as much.

Three OYA awards are given out every year. This year’s awards went to:-

1. Berine – the 13-year-old boy who saved two young girls from drowning.
2. A group of teachers and two security guards who saved their students when a suspension bridge collapsed during an excursion.
3. Me

We arrived at 11:00am as advised. We met En. Syariff first and talked with him while we waited for the ceremony to begin. Elsy then led us to our table where we met Berine and his father. Berine was very shy and quiet. I tried to strike up conversations with them but they talked very little. Sai Fun explained that they came from Belaga in the deep interior of Sarawak and may not be used to conversing with strangers who do not speak their tribal language. That was understandable.

I feel extremely honored to meet these brave and simple people.

Read this news in the News Straits Times here.
And The Star newspaper.

Thank you F & N and the panel of judges.

Now, should I hang this up or not? Mom said we shouldn’t. She is sure as hell Dad will point it out to whoever visits. He is already doing that to my AYA Dream Malaysia certificate much to our embarrassment.

Mom is a tidier person whenever we go for my surgeries in L.A. The first time we went in 2004, she insisted to hand wash clothes instead of using the washing machine and spread them out on the sofa and bed to dry instead of using the dryer. I did not like being cooped up in a room resembling the dhobi right after my brain surgery and told her off.

Since that time, she would still get into the habit but she would pick things up which she left lying around as soon as I comment. Eventually, she figured that if she hung wet clothes with hangers in the wardrobe and washroom, the clothes could dry indoors.

With Dad around, Mom becomes difficult too. No amount of advice, reminder and persuading can make her stop throwing newspapers on the floor. Whenever visitors are coming, I would be clearing her things from the chairs for people to sit without an idea of where to put them instead. Because the things are not mine.

But I would also remind myself that my mom’s problem isn’t that bad. There are worse cases. One of my friend’s mom developed Obsessive Compulsive Disorder ever since she found out that her husband was having extra-marital affairs. Because she uses soaps and detergents accessively, the house becomes a skating rink whenever she mops it. She would leave the pressure of running tap water to clean dirty plates rather than scrubbing them. She would also buy things which she already possessed and have little need for.

They shifted houses recently. My friend’s mother who has OCD did not want strangers to touch their things. But they had to vacate the house in two short days. Without hiring a truck or lorry, they packed everything into plastic bags, threw the bags into their car, fetched the bags to their new house, threw the bags into that house, then go back to the old house to fetch some more. Suffice to say, outsiders are not very welcomed. My friend would much rather meet us somewhere because her mom would be frantic about people dirtying the house.

These two cases has taught me something. Never ever marry expecting your spouse to solve all your problems. When that doesn’t happen, we would feel cheated and become resentful, taking it out on our children. Displacing our hurt, directing it at anyone but the source of our discontentment.

Last night, I woke up to use the washroom. Mom allowed a stray cat to give birth in the kitchen. She left the door slightly open for the cat to go in and out, but there were dropplets all over. When the same happened last year, I woke Mom up from her sleep and asked her to wipe it hoping that she would see the consequences of her actions. Of course, it didn’t work. She needs to deal with her problem from the source. Back then, I’d want to drive a knife through my heart and ask myself, “Is she blind?” But now that I understand what’s causing her behavior, I can be more sympathetic and not let these dropplets affect me until I step on them.

The stray cats are not vaccinated by the way.

A scene from my early childhood comes to mind. Mom threw some of her clothes still with their hangers into the boot of my parent’s old Blue Bird. Aunt Ivy then grabbed those clothes and took them back into the house, telling me to prevent Mom as I watched them without understanding what was going on.

Mom stayed. In the years to follow, Mom would say that she stayed because of me whenever Dad hurt her.

Seeing the way she is now, obsessing over stray cats, I sometimes wonder if people should stay when the marriage is beyond help.

POCC Pink Mobile to Go the Extra Mile

Complete the Cervical Cancer Risk Questionnaire in Malacca, Penang, Johor Bahru and Ipoh

Kuala Lumpur, 25 February, 2009 – The National Cancer Society of Malaysia (NCSM) reaffirmed its commitment towards the Power Over Cervical Cancer Campaign, a public health awareness and education programme, by sending its Power Over Cervical Cancer (POCC) Pink Mobile beyond Klang Valley, with scheduled stops in Malacca, Penang, Johor Bahru and Ipoh to inform more women that cervical cancer can be prevented.

The POCC Pink Mobile also invites women to complete the Cervical Cancer Risk Questionnaire which is designed to highlight information on cervical cancer and the potential risk factors that increase a woman’s risk for contracting human papilloma virus (HPV), the virus which causes cervical cancer.

The POCC Pink Mobile first took to the streets in November 2009 with a goal to obtain 10,000 completed Cervical Cancer Risk Questionnaires by year end. However, the POCC Pink Mobile surpassed its goal by almost 500, and strives to achieve even more in 2010.

Dr Saunthari Somasundaram, Executive Director and Medical Director for NSCM applauded the initiative to transport the POCC Pink Mobile to benefit the public in the other states. “Each completed Cervical Cancer Risk Questionnaire represents another woman who has been educated about cervical cancer, another woman who has been informed that cervical cancer can be prevented through vaccination and pap smears,” commented Dr Saunthari Somasundaram.

Furthermore, GSK has pledged to donate RM1 for every completed Cervical Cancer Risk Questionnaire, with the funds going directly to NCSM.

“There is nothing more empowering than educating a woman that she has the power to protect herself from something as dangerous as cervical cancer,” said Mr Francis Del-Val, Vice President and Managing Director of GSK Pharmaceutical Malaysia, Singapore and Brunei. “For that reason, and following the success of the drive in Klang Valley, we are both proud and privileged to support this outreach activity and extend it to other states.”

For added incentive, early birds who complete the Cervical Cancer Risk Questionnaire will receive a mystery gift from official partners ACP magazines, Pureology and Redken, with extra bonuses for those completing the 500th and 1,000th Questionnaire.

Mr. Del Val concluded, “At GSK, we believe that the recipe for success lies not only in monetary terms or business successes but also through our contribution to society. We want to provide our resources, skills and knowledge towards a viable cause that would bring benefit to the society at large.”

Apart from the POCC Pink Mobile, those who are unable to visit the scheduled locations can also visit www.cancer.org.my or www.powerovercervicalcancer.com.my for more information and an online version of the Cervical Cancer Risk Questionnaire.

POCC PINK MOBILE ROADSHOW SCHEDULE FOR MALACCA
4th March 2010 (Thursday)
Melaka Raya
10.00 am – 6.00 pm
5th March 2010 (Friday)
Red House Square
10.00 am – 6.00 pm
6th March 2010 (Saturday)
Jonker Street
12.00 noon – 8.00 pm
7th March 2010 (Sunday)
Dataran Pahlawan Mall
10.00 am – 6.00 pm

About Cervical Cancer
Cervical cancer is the second most common cancer affecting today’s women.# There is an estimated 500,000 reported cervical cancer cases each year with more than 80 per cent in developing countries#. Globally, more than 270,000 deaths occur each year from cervical cancer# and every two minutes a woman dies of cervical cancer.

In Asia Pacific, an estimated 266,000 cases of cervical cancer are diagnosed each year, with approximately 143,000 dying from the disease# According to the World Health Organization (WHO), only 41% of women in developing country will get the necessary treatment they need to survive.

The National Cancer Registry has reported that in 2003-2005, 16.1 per 100,000 of the female population are diagnosed with cervical cancer, this disease constituted for 10.6% of all female cancers. World Health Organization (WHO) has also stated in 2007 that more than 700 Malaysian women die from cervical cancer every year#.

About NCSM

The National Cancer Society Malaysia (NCSM) is a registered charity body established in 1966 providing education, care and support services for people affected by cancer. It is the first cancer-related NGO established in Malaysia, and the only charity body that provides an extensive range of cancer services, treatment and support to the public.

It is a registered charity with tax exempt status under the laws of the Malaysian Societies Act and Registrar of Societies Malaysia. NCSM was founded by Dato’ Dr S.K. Dharmalingam and launched by the YAB Tun Abdul Razak. It is now under the distinguished patronage of the Sultan of Perak.

Financed entirely by voluntary contributions from the public, NCSM’s mission is “To ensure that no Malaysian fears cancer by creating an understanding of cancer that leads to prevention and early detection, and by providing the best possible care and support for those affected by cancer. “

Being the only charitable organization that provides holistic cancer treatment and support to patients and caregivers, NCSM takes them through their journey in understanding and dealing with cancer in various phases through its five cancer centres – Resource & Wellness Centre, Women’s Cancer Detection Centre, Nuclear Medicine Centre, Cancer Treatment Centre and the Children’s Home of Hope.

About GlaxoSmithKline (GSK) :

GlaxoSmithKline, one of the world’s leading research-based pharmaceutical and healthcare companies, is committed to improving the quality of human life by enabling people to do more, feel better and live longer. For company information, visit www.gsk.com.

This led me to think along those lines. I would guess that my healthcare is not the main issue. There is an underlying one. After all, she refused to believe me when I said that I lost hearing in my right ear at 13 and then kept falling down since I was 14 through 16 years of age. She was avoiding the problem until I could not walk anymore. I literally had to kick and scream before she would bring me to the hospital in KL.

The moment we arrived back in Malaysia from my most recent brain surgery, her mood evidently changed. While we were in the airport taxi heading home, her stress and repressed bitterness surfaced. It was unmistakable. A drastic change.

Mom is happiest whenever we go to L.A. for surgery. She takes leisure whenever we go out for desserts with Audiologist Steve Otto. She can trust Dr. Lekovic, Dr. Schwartz and Dr. Friedman to do what’s best for me. The first things she would think about in the morning is what I want to eat. After my surgery, Mom needs to walk few blocks away to an outside pharmacy to buy medications and she would get me food on the way back. Whether rain or shine, she comes back brimming with excitement. Whenever I was bored and wanted to take a walk around the hospital or go to the mall, she would perk up and quickly put on her shoes ready to go. She likes to ride the bus and take the train there.

I am crying as I write this post remembering how Mom is when she takes care of me after surgery in L.A. Those are the times she can be away from Dad and not see him for weeks.

I am lucky in a way for being deaf. Dad would make unreasonable demands and yell at Mom over the slightest of things. Dad recovered very well physically after his stroke when I was 3. He could think and behave like everyone else for many years. In those times, it was possible to not guess that he had a stroke just by talking to him. But his emotional regulation was very poor. If you happen to upset or disagree in a way that’s sensitive to him, he’d burst with anger and yell at you. Many people have tried befriending him only to be disappointed eventually. How could a person appear kind and logical in thinking become so aggressive in a sudden?

In my growing up years, Dad would yell at me too. One moment, he was very loving and attentive. Next thing I knew he’d yell at me for no faults of my own. Naturally, I learned not to get too close.

Mom’s not so lucky in this sense. She has to hear everything including his crude words.

Dad’s temper became worse when Aunt Ivy’s cancer came back, needed intensive care, and then passed away after two years. Because Aunt Ivy’s care involved a lot of money, Dad’s elder sister had to take over and manage Aunt Ivy’s finances to prevent wastage. But Dad took this as a personal attack against him and became very bitter.

That’s why my own diagnosis was delayed because no one would pay me any attention when I claimed to be experiencing health deteriorations.

Recently, I asked Mom to take me to see Prof. Vickey at UMMC for a second opinion. She was reluctant to and frowned. I didn’t understand why then. But I do now.

It means a lot to Mom when I get treated by my doctors in L.A.