Day +87

I am fine today. Let me continue to share my second chemotherapy’s experience in UH.

According to doctor, no body escaped fever during chemotherapy. This means a patient who undergoes chemotherapy will develop at least one occasion of fever and chill. I told doctor I would like to break this record. So I tried my best to take care of myself, put on mask even when I was sleeping, ate well cooked food, limited my movement within the cubicle and took other necessary measures to make sure that I would not develop fever. Despite all these efforts, I failed to break the record.

On day 14, a small area of my left groin turned reddish in colour, and started to swell and experienced pain. At the same time, a boil developed near the left side of my anus. I suspected the boil caused the swelling at the left groin. The doctor started to administer intravenous antibiotic to me.

On day 16, I developed fever and blood sample was taken for culture to determine the type of infection that I might had.

Doctor advised me to do sitz bath twice a day. My brother-in-law gave me a bottle of original Dead Sea salt, which he purchased while visiting Israel, for me to do sitz bath. Since patients were sharing toilet, so I have to wake up at about 5:30am each day, while other patients were still sleeping, sit in salt water for at least half an hour in the toilet. Fortunately, my nephew brought me many JinYong (金庸) novels. Therefore, the time passed very fast in the toilet while reading the novels. If I met a nurse on my way to toilet with my PDA, novels, the salt and other stuffs, I always said to them: “See, I am going to enjoy my sitz bath now.” :-)

See you next post :-)

Day +86

I am fine today. Now back to my 2nd cycle of chemotherapy at UH again.

As I mentioned, I was receiving a chemotherapy regimen called “7+3”, which means that I was given a chemo drug called Ara-C throughout the 7 days and another chemo drug called Daunorubicinn for the first 3 days only. This means I was receiving both Daunorubicin and Ara-C on the first 3 days, and then Ara-C along for the following 4 days.

After the 7 days, the red blood, platelet and white blood counts started to drop. I was transfused with red blood or platelet when their count became very low. But if the white blood count was too low, a condition called neutropenia, no white blood transfusion could be done. Whenever this happened, the patient's immune system became very vulnerable to infection. In order to reduce the risk of infection, a drug called Neupogen (growth factor) was used to simulate the bone marrow to produce white blood cells. Therefore on day 8 onward, I was given Neupogen until day 23, a total of 15 doses of Neupogen. Each dose of Neupogen costs about RM260.

The patient will be allowed to go home (home leave) for two or three days immediately after all the chemo drugs for that cycle were given, provided his/her white blood count is still within acceptable level. However, I always chose not to go home because it was too troublesome to shift many personal belonging back and forth, and to go through the discharge and admission procedure, just to get two or three days of home leave. Furthermore, if a patient developed fever, bleeding or other symptoms at home, he/she had to be admitted to hospital immediately no matter when does it happened.

I had to stay in the hospital at least 21 days for a cycle of chemotherapy. You might wonder what patients normally do after chemo drugs were completely given. The answer is to wait for the blood counts to drop, fever and infection, and then for the blood counts to pick up again. Some patient managed to recover faster than me, but a small percentage of patients never recovered due to serious infection :-(

Whenever I was discharged from hospital, I praised God through the Bible verse, “Yes, though I walk through the valley of the shadow of death, I will fear no evil: for You are with me; Your rod and Your staff they comfort me.” Psalm 23:4.

“我虽然行过死阴的幽谷，也不怕遭害。 因为你与我同在。 你的杖， 你的竿， 都安慰我。”诗廿三：四

See you next post :-)

Day +85

I went to UH for bone marrow aspiration (BMA) this morning. This was my 8th BMA, and this was also the first time I did not request the doctor to put me to sleep during the procedure. The process took about half an hour. It was quite painful when the local anesthetic was given, but after that I did not experienced much pain. Without sleeping, I managed to come home immediately after the procedure.

I asked my son, Joseph, about his Chinese subject exam yesterday. He told me that he could do all spelling test, but could not do some of the sentence building questions. This is because some questions were beyond the scope given by the school teacher. One question requires him to build a sentence using the word “儿童” (Children). He told me he did not know how to build the sentence because he did not know how to write the word “家庭” (family). In the end, he made a sentence like this, “我有很多儿童” (I have many children).

Since he has so many children now, I called him Baba Joseph. When I wanted to help him to do some revision this morning, I said to him, “Baba Joseph, please get your Bahasa Melayu book ready, Grandpa want to teach you now.” :-)

See you next post.

Day +84

I am fine today. Today is the last day of my official transplant program.

My wife and I are very busy teaching our two boys to prepare for their exam. It looks like they have this “study-phobia” symptom. Therefore, it is extremely difficult to motivate them to sit down quietly to study. Every time, we have to spend “九牛二虎之力” (tremendous amount of effort) to just get them taking out their book and sitting down. They got very poor result on their last assessment, but they just don’t care about it.

The eldest boy, Daniel, has a very good memory but the second boy, Joseph is incredibly forgetful especially on remembering Bahasa Melayu (BM) and English spelling and pronunciation. I asked him to follow me to say the BM word “berhenti” (stop) a number of times until he could pronounce it himself. Then I asked him to make a 360 degree turn and asked him the word again. He tried very hard to recall how to pronounce the word but it seemed that he could not find a reference in his memory to do that. Sometime, after the 360 degree turn, he will pronounce the word as “berhati”. In the end I took out a cane and told him I would only stop to cane him if he said “berhenti”. He managed to remember it after this. I found out his technique of remembering is quite different from others. He tried to remember the spelling first and then tried to pronounce based on the spelling. As we know, remembering spelling is always more difficult than remembering the pronunciation, so it is very difficult for him to learn BM and English, even though he studied in English kindergarten. He could remember better the Chinese words because many Chinese words are formed with meaningful parts, which is a lot easier to remember than the meaningless alphabet.

In order to motivate them to study, I rewarded them with “Computer Game Coupon”. Every two hours of study will be rewarded with a 30 minutes of game play. Some bonus time will be given also if they behave well during the study. They can then use this coupon to play computer games on my computer after the exam. Since they like computer game so much, this coupon system makes our life a lot easier in getting them to study :-)

See you next post :-)

Day +83

I am fine today.

My brother went back to our home town Bintangor, Sarawak last week. My third sister purchased three black “kampung”(village) chickens from her neighbor. Then my brother-in-law helped to cut and washed them, packed and freeze them and then asked my brother to bring them to me yesterday. Each chicken weighed about 2kg and each kg costs RM17 at Bintangor. Since the chickens had to be transported here by airplane (The airplane which bears the mark “Now everyone can fly”, including the frozen chicken I guess;-)), the actual cost of having them here would be at least RM25 per kg.

These chickens are really the genuine world class “kampung” chickens. They are normally fed with corn, and are free to wander around the house. Apart from running, they also learned to fly. Although they cannot fly as high or as long as eagles, they always managed to reach a branch of some trees and sleeps there. Furthermore, they are totally free from antibiotic and growth hormone.

It is extremely easy to cook this type of chicken. Just boil it with a few slides of ginger and add a little bit of salt will do. It is definitely more delicious than KFC even we don't fried it. My boys are very happy to hear that we have such chicken for lunch because they had tasted it when we were having holiday in Sarawak.

The “kampung” chickens here are definitely not as good as those that my brother brought to me. The chicken seller here told me that the “kampung” chickens here are normally reared within a fence. Even though they don’t rear the chicken within a cage, we don’t know how many chickens they squeeze within the fence. We also never know what they feed the chicken with, and whether they inject these “kampung” chickens with antibiotic or growth hormone. That’s why I stopped to take chicken meat when I received the first antibiotic during my bone marrow transplant; because I worried the antibiotic residue from the chicken might interfere with the antibiotic that I was receiving.

May be I don’t know where to purchase genuine “kampung” chickens here. Please let me know if you know where to get them.

See you next post :-)

Day +82

My Blood Count Today:
Red Blood Count (RBC) = 108(Normal 130-180)
Platelet = 67(Normal 150-450)
White Blood Count (WBC) = 2.7(Normal 4 - 11)
Absolute Neutrophil Count (ANC) = 1.593 (Normal 1.5 - 8.0)
Potassium = 4.3(Normal 3.5 - 5.2)
Magnesium = 0.59(Normal 0.65 - 1.05)

I am fine today. All blood count reading drops compared to last week result. One of the reading concern us most is the platelet because it has been dropping quite abnormally. Doctor said she does not know the reason for now. The PBF last week shows that the blood was free from blast (cancer cell).

As part of the transplant program, the patient has to do a bone marrow aspiration (BMA) on day +84. The nurse arranged me to do a BMA on this Thursday, which is day +85. Hopefully the BMA result will provide doctor some clues on why the platelet is dropping, and I also hope that the result would be fine.

The transplant program lasted until +84 days, so the nurse discharged me from the transplant program. I have to do the next follow-up through the day care clinic, where I will be attended by day care nurses rather than BMT nurses. However, the place and time to see the doctor are still the same. I might not enjoy priority in seeing doctor and taking x-ray anymore. Patients paid a lump sum which covers the expenses throughout the transplant program. After the discharge, patients have to pay for follow-up expenses such as blood test and medication. Fortunately, my expenses are covered by government because my wife is a government staff.

I met an AML patient in the ward today. I enquired about his life style before the disease. He said he smoked but didn’t drink alcohol much. He tried very hard to stop smoking but always failed. I asked him what happened after he was diagnosed with AML. He said he completely stopped smoking after the chemotherapy without any struggle. "Chemotherapy is so effective in curing smoking addiction, it washes away all smoking addictive compounds from my body." he said :-)

See you next post :-)

Day +81

I am fine today. Now back to my experiences in UH again.

I started my second chemotherapy in UH on the 9, January 2005. The protocol for this cycle of chemotherapy was the same as the first chemotherapy. It is called “3+7” regime. I could remember while the housemanship doctor injected the first dose of chemo drug through my PICC line at 6:00pm that day, he told me he really didn’t know what my feeling was. I could not answer him because this feeling was difficult to explain. What I had in my mind is to trust God completely and determined to face another round of challenge.

The environment in UH was very different from NMSC. Most of the patients here stayed in open space, separated by a few opened cubicles. A few patients were placed in each cubicle. There was no way to control the visitors. So I put on mask most of the time to protect myself, even though some nurses advised me it was not necessary to do that.

The first thing I did was to introduce myself to every patient in the cubicle. I must say that they were the most cheerful and positive patients I ever met throughout my stay in UH. A few of them can be considered world class “开心果” (jokers) who always created laughter, made fun of the nurses, the doctors and other patients. But of course, no one can be cheerful all the time. When one was having fever and chill, he/she always trembling under a few layer of blankets with his/her long “苦瓜脸” (Bitter Gourd face – Is this the right translation?), but once he recovered from the fever, the fun began again. Since we had a few of them, so the fun never stopped. May be this is “苦中作乐” (tries to find pleasure amidst suffering), but I think “苦中作乐” is a lot better than “怨天尤人” (blames everyone). Some nurses also joined the crowd to create a very friendly and relaxing environment.

So although my family members did not manage to accompany me all the time, the life there was not boring at all. In fact, I could handle myself most of the time if I was not having fever. Sometime Pastor and my brother, Richard, came to stay overnight with me.

See you next post :-)

Day +80

I am fine today.

My nephew in Sarawak signed up a service called VOIP Stunt. Paying a fee of Euro 10.00 will allow him to call from his computer to any fixed line within Malaysia and many other countries for 120 days. Initially, I thought he could make unlimited call with this service. But I notice later that there is a condition written with small letter at the end of each web page saying that “Max 300 minutes per week of free calls, measured over the last 7 days.” That means the service provider limited the free call to 300 minutes per week, the subscriber has to pay for call duration exceeding 300 minutes over the last 7 days. If the subscriber can make full use of 300 minutes per 7 days over a period of 120 days, then the call rate per minute is about RM 0.01, which is much cheaper than local Telekom rate of RM 0.04 per minute. At the end of 120 days, the Euro 10.00 is still there, but the subscriber cannot make free call anymore because the 120 free days have been used up. However, he/she can still use the Euro 10.00 or remaining credit to make call to those countries which are not free.

He persuaded me to sign up this service. I told him I don’t make oversea call frequently, and I cannot even finish the 250 minutes call under my mobile phone package. After listening to my explanation, he still thinks that I need to sign up because the service is “too good.” We have the following conversation.

David : How do you pay the fee?
Nephew : Mum’s credit card.
David : My mum does not have credit card.
Nephew : But you have, use your own credit card.
David : If I use my own credit card, I have to pay the bill. You use your mum's credit card, she pays the bill. So it is different.
Nephew : You earn a lot of money.
David : No more now, as I don’t work.
Nephew : Use your wife's credit card.
David : My wife does not have credit card.
Nephew : Ok-lah, use my account-lah. (His Voip Stunt Account)
David : Great! I will inform you first before I make call using your account.
Nephew : Not need-lah, just call. I don’t use it much also.

You see, he don’t need the service so much, and yet he signed it up just because he feels that the offer is very good. At the end he sends me his account and password.

With his account, I can make call using my notebook computer which should be more healthy than the hand phone because notebook computer does not need to transmit strong electromagnetic signal like the hand phone :-)

If you signed out similar service and fail to make full use of them like my nephew, just let me know, I might do you a favour :-)

See you next post :-)

Day +79

I am fine today.

My wife knows how to cook very delicious Sambal Ikan Bilis (Chili Paste with Anchovies). She prepared this dish together with Nasi Lemak (Coconut Rice) for our church potluck a number of times. Many people like it. My mother-in-law and maid cook this dish for us today. Even though they don't add Belacan (Prawn Paste), it still tastes very nice.

Chili is a healthy food. A compound called capsaicin, which makes red chili hot, has been tested to cause cancer cell to self-destruct (apoptosis). The article about this can be found here. Now the more controversial ingredients are Belacan and Ikan Bilis, which many believe are linked to cancer. Therefore, my mother-in-law doesn’t add Belacan into the Sambal Ikan Bilis. However, they still add some Ikan Bilis, because without it, the dish will becomes Sambal “Nothing” :-( There is an article from BWCA (Breast Cancer Awareness Campaign) called “The Ikan Bilis and Belacan Story.” You can click here to read the article. Only the first two paragraphs are relevant.

I wish I could eat fresh fruits very soon. Sometimes, my mother-in-law or the maid cooked pineapple syrup for me. It tastes like the canned pineapple syrup. Although it is delicious, it is too troublesome to prepare the syrup. I would rather eat it fresh.

See you next post :-)

Day +78

I am fine today. I would like to talk about some of my experiences in UH.

As I mentioned earlier, I decided to continue my treatment in UH after I came back from Kuching, Sarawak.

My first appointment in UH was on the 29, December 2005 which was on Thursday. We were totally new to the hematologist section in UH and we did not know where to find the hematologist in UH. My sister called UH and enquired about the place where we could meet the hematologist. Someone in UH told us that hematology clinic in UH only open on Friday, not on Thursday.

I did not want to miss this appointment. So I called the hematologist in NMSC, Kuching to confirm that the appointment was on Thursday. The hematologist there told me that the hematologist in UH agreed to meet me on Thursday. If the clinic was open on Thursday, I could just go straight to the clinic to see the hematologist there, but now the clinic was not open, where could I find the hematologist?

Fortunately, my pastor knew a specialist in UH. He helped me to contact the specialist to contact the hematologist. At the end we were told to meet the hematologist in the hematology ward. After my first appointment, I only knew that most of the time the hematologists were seeing patient in the ward, not at the hematology clinic.

See you next post :-)

Day +77

I am fine today. Let me continue talking about milk.

I did health screening every year. My blood test result at the end of year 2004 revealed that my bad cholesterol exceeded normal level and my blood pressure was also too high. Since then, I jogged everyday and started to take Spirulina, oat meal, apple and some other health foods. After I jogged consistently for a few months, my body weight dropped from about 67kg to 62kg, and the cholesterol level became normal.

At that time, I took low fat milk everyday. After someone warned me that milk is not good for health, I stopped taking milk completely. So I just took an apple and instant oat meal mixed with hot water for breakfast. Sometimes, I also took apple juice, carrot juice and steamed sweet potatoes.

After stopping taking milk for two months, I experienced pain at joints on my hands and legs. I suspected this pain must be due to lacking of calcium in my body. So I started to mix milk with instant oat again. Not long after, the pain was gone completely. This made me to continue to take milk until I was diagnosed with AML. I am now taking lactose free milk make of soy protein extract called Ensure. Some might argue that they are many sources of calcium, why one must get it from milk? To me milk is a very convenient source of calcium. According to one of the article I mentioned yesterday, milk provides us good source of proteins which contain 8 types of amino acid the body cannot produce by itself. If I don't take milk, then I need to swallow many supplement pills everyday.

I knew a couple whose eldest child was allergy to cow milk. So when they got their second child, they thought that this child must also be allergic to cow milk. They fed him with soy milk only to find out that this second child is allergic to soy milk. In the end they fed this child with cow milk. If we say that we cannot take some food because someone is allergic to it. Then in this case, we will conclude that we cannot take cow milk because the first child is allergic to it and we can't take soy milk either because the second child is allergic to it. Unfortunately, the mother said that she cannot produce breast milk for the child, then what the child should take? I guess someone might introduce them plant milk and cereal milk :-)

The "Sin Chew Daily" newspaper reported yesterday the lifestyle of a 111 years old Japanese man who is still healthy. He said he does not smokes and drinks alcohol, but he drinks milk everyday :-)

See you next post.

Day +76

I am fine today. I would like to continue talking about health again. I must say that my view might not necessary be correct. I am just tried to be a little bit "naughty" to provide some alternative views to the “alternative” views (those practices advocated by alternative therapist or nutritionist), which many people just accept them without questions.

One of the "alternative" views is that we should not drink cow milk because cow milk is for the cow, not for human. One "professor" who called himself the "Father of Detoxification" even claims that "You are what you eat." So this gives people impression that if you drink cow milk, you are cow :-) Since many people don't want to be a cow, they stop taking cow milk. But if you ponder a little more on that statement, you will sooner or later get this incredible conclusion, "We have to eat human to be human." :-)

The other reason commonly cited is cow milk cause allergy (lactose intolerant). But the question is how common does this happens? If most people, especially adult, are not allergy to cow milk, there is no reason to avoid cow milk. I totally agree that breast milk is the best, but we can't expect adult to drink breast milk.

Some of other claims include cow milk causes cancer, heart attack and many other problems. These claims might be supported by some researches which are not conclusive. So we have to be very careful of being selectively presented with research reports that support the claim only, while there are many other research reports that go against the claim.

While the internet is saturated with anti-milk claims, I referred you to this article on MSN called "Milk Stirs Debate". Another article in Chinese “牛奶，到底还能不能喝？” (Can we drink cow milk?). I hope these articles will provide you a more balanced view of the claim.

I will share with you my experience with milk tomorrow.

See you next post.

Day +75

My Blood Count Today:
Red Blood Count (RBC) = 113(Normal 130-180)
Platelet = 73(Normal 150-450)
White Blood Count (WBC) = 3.1(Normal 4 - 11)
Absolute Neutrophil Count (ANC) = 1.891 (Normal 1.5 - 8.0)
Potassium = 4.6(Normal 3.5 - 5.2)
Magnesium = 0.64(Normal 0.65 - 1.05)

I am fine today. Platelet continues to drop from 92 to 73 while the rest of the result is quite stable. After seeing the doctor, the nurse draws another blood sample for Peripheral Blood Film (PBF) test to investigate why the platelet keeps on dropping. So I "kena cucuk dua kali." (get poked twice) Fortunately, no magnesium infusion is needed today; else I have to bear the pain of setting up an intravenous line. The doctor also cut down my Cyclosporin intake from 150mg per day to 100mg per day. I took 200mg per day initially, which was reduced to 150mg on day +54.

My wife comes across a Nasi Dagang recipe in a cook book. It is a very famous and delicious food in Trengganu and Kelantan. Some people called it "Nasi Lemak" of Trengganu and Kelantan. It is usually eaten with Kari Ikan Tongkol. I only ate twice long time ago. We tried to cook it by ourselves, but could not find the Nasi Dagang rice here. There are two types of Nasi Dagang rice, one type is reddish brown in color and the other type is white in color. One of the BMT nurse bought us both types of rice and a type of spice called "halba"(fenugreek seeds) when she went back to Trengganu for holiday. With all ingredients available now, I would be able to enjoy this food very soon. You might think that curry is not a healthy food, but I read from newspapers at least three times saying curry will prevent cancer :-) "信不信由你"(Believe it nor not?) I choose to believe because I want to enjoy Nasi Dagang with Kari Ikan Tongkol :-)

One my way back from hospital, I went to computer shops at Sunway Pyramid to look for pen-shaped optical mouse. We can hold this type of mouse like a pen for easy writing and drawing on computer. I need it to elaborate something through a drawing board while giving tuition to my nephew through internet. Unfortunately, I asked almost all the computer shops that could possibly sell this type of mouse in Sunway Pyramid "Digital Centre", nobody even heard about this device :-( It looks like I have to buy an expensive pen tablet.

See you next post.

Day +74

I am fine today. Finally, Joseph and I managed to complete all the 100 levels of Star Defender II. We win :-) Now back to my story…

On my blog on day +48, I mentioned I encountered many people speculating the causes of my disease as thought they are more knowledgeable than specialist. Most of the time I just listened to them, but sometime I tell them how I live.

1. I didn't smoke and drink.
2. I jogged very everyday until I sweated a lot. This is detoxification.
3. I normally passed motion in less than 1 minute everyday. Again this is detoxification.
4. I ate an apple everyday in the morning before meal.
5. I ate oat meal mixed with low fat high calcium milk every morning as breakfast.
6. I took Spirulina tablets, Chorella tablets, salmon oil capsules and Vitamin C everyday.
7. I ate home made yogurt almost everyday, at least 500ml per week. I sometime mixed the yogurt with New Zealand Manuka honey.
8. I drank at least a cup of green tea imported from Japan everyday.
9. I seldom took outside food. I came home for lunch everyday, because my house is near the office. I ate simple meal comprises of mainly vegetable, fish and rice with some chicken meat.
10. I took a 15 minutes afternoon nap everyday.
11. I normally slept early and waked up early.
12. I listened to a lot of classical music, at least 8 hours during working day.
13. I was very interested in my job, so even I worked a little bit harder than other staff; I was not too much burdened by the job.
14. I ate quite a lot of fruits.
15. I slept very well everyday.
16. I am a Christian and I am happy most of the time. I don’t have much worry in my life.

After I explained to them these points, do you know what I answer I get? The answer is "Funny O..". Because this is somewhat against what they belief:

1. You don't get cancer if you pass motion smoothly and sweat everyday, because they detoxified your body.
2. An apple a day keeps the doctor away.
3. You must be healthy if you took oat meal.
4. Spirulina, vitamin C will increase your body immune system.
5. Yogurt provides a lot of good bacteria to you. You will be healthy by taking yogurt everyday.
6. Green tea prevents cancer. After I was diagnosed with this disease, I still read something about this in the newspaper. I laugh...
7. Christian should be always healthy.

I met a patient who was very concerned about her health, taking brown rice and almost never touch fried food, but she was diagnosed with CML and passed always few months ago.

The conclusion is a lot of concept on "healthy life style" as advocated by natural therapist might not always be true. If you follow everyone's idea, you might end up with nothing to eat and have to hide inside a space suite in order to avoid contact with the polluted environment :-)

We can do our very best to live a healthy life, but I can tell you also no one knows how "healthy" is really "healthy". So the most important point to me is to trust and to put our hope in God, a hope of eternal life in heaven without sickness, pain, sorrow and suffering :-)

See you next post :-)

Day +73 (16 September 2006)

I am fine today.

I am addicted to computer games today until I don't have time to write blog, so I delayed this posting. So today here actually means yesterday.

I have an idea of developing some simple educational computer games for my sons, Joseph and Daniel. The content of the game will be related to their study. They will be able score higher points if they study harder. Since they are crazy about computer games, I believe they will be motivated to study in this way.

So I am looking for simple game making software which would allow me to assemble a computer games quickly. I came across a few of them. Among them are Adobe (Macromedia) Flash, Game Maker, Phrogram, and Microsoft XNA Game Studio Express. Flash is very popular, but expensive while the rest are available for free. Phrogram is formerly known as Kid Programming Language, initially designed for kid to program games. But now it has grown up to become Phrogram. Microsoft XNA Game Studio Express is still under beta, it can produce games to run on Microsoft Windows or XBox. Game Maker seems to be easiest. It also includes a particle system for special effect such as explosion, firework, fire, steam, cloud and flare. All these software requires some form of programming.

After surveying the software, I search for some example shooting games on the internet. I came across a game called Star Defender, a very simple arcade style shooting game. I get hooked to the game, because I want to win by completing all the 100 levels, but I could not do it, even after summoned in my son Daniel and Joseph to help :-( Not only this, we tried also Star Defender II and Star Defender III until 1:00am, but still "kalah"(lost) :-(

Daniel said this game is not nice. He is more interested in The Stronghold 2 and Rise of Nation, which I don't know how to play at all. I think I better learn to play these games as soon as possible, else he will laugh at me and say I am “bodoh”(stupid) :-(

See you next post.

Day +72

I am fine today. Just continue to talk again... I hope you don't get bored with my almost endless talking. I think I would be as talkative as my second sister very soon :-)

I met a patient in UH. We were on the same ward doing chemotherapy. He refused to fix a PICC line even we explained to him the advantages of doing it. Because his vein was not so "beautiful", so doctor had to try a few times to setup an intravenous line for him. With PICC line, he did not have to bear so much pain. His reason of not fixing the PICC was that he did not want people to know about his disease, especially his relatives. When someone sees the PICC on his arm, he has to explain what it is. We pitied him when he shake his head and said, "They are really bad..."

I believe hiding the disease is a pain by itself. So I told many people that I got this disease, be it my relatives, church members, colleagues and ex-colleagues, school mates and neighbors. When I was healthy, life was too busy until I just did not have time to keep in touch with them. But I have more time now, so I started to email them and tell them, “You would be surprised I have a new job to do.” Most of the replies said that they were not only surprised but shocked to hear this. Some of my friends just appeared suddenly to support and visit me, after we lost contact for more than 10 years.

When a vegetable seller in the market saw my bald head, she thought that I converted to Buddhist and became a “和尚” (Buddhist monk) now. I just tell anyone who asked about my disease. These include the fish seller, meat seller, chicken rice seller, the pharmacist and many people that I met after I started my chemotherapy.

Did I worried to encounter people who “幸灾乐祸”(takes pleasure in others' misfortunes)? No, no. If someone is happy because of my disease, I need not to be sad because I make someone happy :-) But I can assure you that this type of people is extremely rare :-)

See you next post :-)

Day +71

I am fine today. Just continue my story...

After discharged from NMSC on 20, December 2005, I stayed in my sister's house in Kuching for a few days. My family and I flied back to Kuala Lumpur on the Christmas day. We missed all the Christmas activities.

My family members wished that I did not have to do bone marrow transplant. They hoped if I repeat the cytogenetic analysis, the result would be more favorable. My fourth sister brought me to see a hematologist in SJMC in order to get his opinion about my future treatment. The hematologist said that my case was very straight forward; the treatment had to be 4 cycles of chemotherapy with bone marrow transplant. From there onward, I was determined to go for bone marrow transplant even though I knew "it is a high risk business."

Apart from moral support in term of encouragements and prayers, I also received a lot of financial help from family members, relatives, church members, friends and my wife’s colleagues. Some of them were so generous in giving money until I felt a little bit embarrassed to receive it. As I had to temporary stop working and my wife also applied leave for a year, our income is greatly reduced. My church and my wife's school raised some fund for us and the company that I worked is also supporting me. My wife's school even planned to raise fund for us second time to payoff more than RM10,000 overdrawn salary due to my wife's unpaid and half-paid leave, but we turned it down because we believed we could settle it with our saving.

I considered myself very fortunate because so many people care about me and my family.

See you next post :-)

Day +70

I am fine today.

Apart from teaching my sons Joseph and Daniel, I also started to teach my nephew STPM (Malaysia Higher School Certificate) Physics. He is my third sister's (my stem cell donor) eldest son who is staying in Bintangor, Sarawak. He is not like my sister who is hardworking and very sleepy; he is actually very lazy but not sleepy at all. In order to encourage him to study harder, I volunteer to teach him Physics, starting from chapter one, a few times in a week. Hopefully, my clear and detail explanation will make him more interested in this subject.

The tuition is done through internet. The most suitable software is Yahoo Messenger with voice as it offers a plugin called "doodle" that serves as a common drawing board. A webcam can be useful, but is not a must. Other software like Microsoft Live Messenger and Skype do not offer a common drawing board where both the student and teacher can draw together, so they are not suitable for online tuition. I am planning to replace my standard mouse with an optical pen mouse which will enable me to write nicely and quickly in the drawing board. Pen mouse is still not widely used yet. If you came across a good one, please recommend it to me.

If you or someone needs help in subjects like Physics, Mathematics or even some computer subjects like programming, I might be able to help :-)

See you next post :-)

Day +69

I am fine today. Just continue my story...

I purchased insurances for myself and also my children from a few insurance companies. These insurances included life insurances, life insurances with critical illness, medical insurances and education saving insurances. The last insurance agent that I purchased insurances from is a very nice and professional person. Long before I was sick, he already helped me to analyze and summarize all my policies. Because of this, I find out all the policies which were scattered throughout many places and placed all of them in a bag. The policy summary and all insurance related documents were also filed properly.

Immediately after I was diagnosed with AML, I asked someone to pass my insurance file together with the policies to the agent to process the claim. He analyzed and handled the claim for all my insurances, regardless where and who I purchased them from. In order to do this, he had to make many contacts and visits to those insurance companies other than the one he is attached with. He even helped me to process my Social Security Organization (SOSCO) claim later. I am very satisfied with his services and definitely would recommend him to you :-)

But I was not so fortunate to meet an insurance agent who advised me to drop a term reducing rider on my critical illness policy. He also advised me to terminate my critical illness policy which I already paid premium twice. The idea was to purchase investment linked insurance from him which he claimed will result in better reward in the end. Unfortunately, I listened to his first advice which result in my claim reduced by about RM180,000 :-( Fortunately, I did not listen to his second advice, else my claim will be a lot less :-) It is by no mean to blame the insurance agent for this, as the final decision was still mine. However, I learned a lesson from his: consult more people (other insurance agents in this case) before making a decision.

See you next post :-)

Day +68

My Blood Count Today:
Red Blood Count (RBC) = 105(Normal 130-180)
Platelet = 92(Normal 150-450)
White Blood Count (WBC) = 2.9(Normal 4 - 11)
Absolute Neutrophil Count (ANC) = 1.595 (Normal 1.5 - 8.0)
Potassium = 4.2(Normal 3.5 - 5.2)
Magnesium = 0.64(Normal 0.65 - 1.05)

I am fine today. The platelet count drops 17% compared to last week result, quite a big drop. But there is a good increase in magnesium, almost reaching the normal level. The rest of the blood results do not change much. I was given another magnesium infusion.

When I first met the BMT nurse this morning, she reminded me that she would remove my PICC line today. I could not object this because I had already promised them last week to have this PICC line removed today. If a PICC line is used for more than 6 months, the risk of infection through the line is high. She said if I don't allow her to remove it, she would "takut-takutkan"(scare) me. I don't know how she would scare me, because I was already very scared before she scared me, therefore she don't have to scare me to make me scared of continue having this PICC line in my body. This is my second PICC line which was inserted on 2nd, March this year. The previous PICC line that I had was removed after 3 months in service due to fungus infection. So I had been living with PICC line, days and nights, for over 9 months. Now my hand is free of this line. I don't have to wrap my hand with plastic bag anymore before taking bath, and worry about blockage. Next week, the nurse has to draw my blood sample by poking needle into my vein :-( I just hope that no magnesium infusion is needed; else fixing an intravenous line for magnesium infusion could be painful :-(

A few hospital staff said to me today, "U tumbuh jambang." (You grow beard). This is the first time I came across the Bahasa Melayu word “jambang”. But I was able to guess quickly that they were referring to the hair on my face, which grows longer each day. The doctor asked me why I don't shave the "jambang". The reason is simple. I am just curious to see how I will look like with this "jambang." And who know I will be able to sing better with this "jambang", because one of the world top tenor, Luciano Pavarotti, is also “jambang-ful” :-)

See you next post :-)

Day +67

I am fine today. I would like to talk gain...

Before the discharge, I needed to make a decision of where I should further my treatment. I could continue my chemotherapy in NMSC in Kuching or Subang Jaya Medical Centre (SJMC) in Selangor, but the medical fee could easily exceed the entitlement of my medical insurance. The other choice was to go to Kuala Lumpur General Hospital (KLH), but I expected there are too many patients there which might result in long waiting list. Finally, I decided to further my chemotherapy in UH, which is a semi-government body. As my wife is a government teacher, I entitled for free treatment in government hospital. So I would not be expected to spend too much in UH.

The next decision was to choose my transplant centre. I had three choices: Singapore, KLH, SJMC and UH. The cost of doing a sibling allogeneic transplant in Singapore and SJMC was estimated to be RM200,000 and RM150,000 respectively. Again, this is beyond my insurance coverage. However, I planned to do my transplant in SJMC initially, but changed my mind later to do it in UH after consulting with a hematologist in SJMC.

See you next post :-)

Day +66

In NMSC, my care taker cooked for me oat meal mixed with vegetable and fish almost everyday. They boiled everything together using a rice cooker in the room. Sometimes they also brought food from my eldest sister house which tasted much better than the oat meal.

My eldest sister also cut my hair, but not long after that my hair started to drop. So she helped me again to pull off most of my hair, not violently, but gently without causing pain. If we didn't do it this way, my hair would drop everywhere in the room :-(

A senior uncle from my eldest sister's church came to visit, encourage and pray for me many times. He and his wife were having cancers earlier and went through chemotherapy, but they were healthy now. His also prayed for me through the telephone when they could not visit me. In his prayer, he always said, "With the treatment given by doctor, coupled with the grace of God, you shall be healed."

I experienced one occasion of chill and fever that lasted for a few hours. Apart from this, I also developed rashes over my body because I was allergic to some chemo drug.
The doctor informed me my cytogenetic analysis result on the 19, November. This analysis studies the chromosome abnormalities of a patient. It is important in determining the prognosis (long term survival rate) of a cancer patient. Based on the type of chromosome abnormality, the patient can be categorized into low risk, medium risk and high risk group. It is not necessary for a patient who is in the low risk group to go for bone marrow transplant, unless he/she experiences a relapse. We all hoped that I will be in this group. But the result showed that I am in the high risk group. So I was advised to go for transplant.

I was discharged from NMSC on the 20, December 2005, hospitalized for 23 days and 22 nights. The medical fee was very high. Fortunately, I purchased medical insurance which allowed me to claim most of the fee.

See you next post :-)

Day +65

I am fine today.

My third brother from Bintulu visited me today. He was on his way to attend a training in Trengganu. He brought me quite a lot of fish from Bintulu. As Bintulu is a town by the seaside, the resident there can always enjoy fresh and cheap seafood. The extra large prawn costs about RM30 per kg only over there. I should ask him to bring prawn next time.

I dream of having hot Tomyam prawn soup now :-)

See you next post :-)

Day +64

I am fine today. I would continue my talking...

My third brother is working with Petronas in Bintulu. When he heard that I was diagnosed with AML, he immediately grasped his bag and intended to catch the next available flight to visit me in Kuching. His wife reminded him that he had to work night shift that day, and there was no way he could get back to work in time if he went to Kuching. In the end, he came to take care of me in NMSC during his off days.

One of my cousins in Bintangor who is older than me reacted even more aggressively that my third brother. After he knew that I had blood cancer, instead of rushing to Kuching to visit me, he ran away from home and hid in a hut in his pepper garden for almost one week. My aunt had to send him food everyday :-( I have to ask him why he did this when I meet him next time.

At that time, my fourth sister and her husband was joining a church tour oversea. We managed to contact them and they said that the group was praying for me. They brought back some salt from the Dead Dea, which I used to do sitz bath.

She believed in health foods as advocated by natural therapist a lot. So out of concern, she brought me a lot of health foods and nutritional supplements when she came to visit me in NMSC. She even advised me to stop taking solid foods and just to take the very expensive green powder that she brought to me which consists of a mixture of spirulina and other natural ingredients. She was influenced a lot by her friends and always said, "Doctor don't know about nutrition, so don't bother to ask doctor's opinion about this nutritional food." or "Natural food can be taken as much as possible, without causing any harm to your body. The more you take, the better you are." or "Someone took this green powder during chemotherapy, so his hair did not drop." or "You must drink as much fresh fruit and vegetable juice you can, someone's cancer get healed without even going for chemotherapy because they do this."

Anyway, we showed all the health foods and nutritional supplements to the hematologist and he advised me not to take any of them except the vitamins. I know I would be bombarded with all sort of alternative health approaches, herbs, magic health products and all sort of secrete recipes later. So I began to ponder issues related to alternative therapy in NMSC, and finally, I came to some conclusion which I would share with you later.

My third sister, who donated her stem cells to me, also came to take care of me more than one week. My youngest brother, Richard, came and took care of me twice. My first and second brother in Bintangor did not come to visit me, but they were also very concerned about my disease. My mother could not walk well after she experienced a stroke and brain surgery few years back, so she could not take care of me either.

You see, it is good to be in a big family with good relationship among its members. I was accompanied by my family members all the time during my first chemotherapy. I praise God for this :-)

See you next post :-)

Day +63

I am fine today. I started to teach my sons, Daniel and Joseph, to do their homework. As a precaution, I put on mask and asked them to study just outside my room.

Now back to the story…

My eldest sister is also very talkative, but the most talkative one in my family is my second sister. When I was in NMSC, my second sister also came to take care of me for quite sometime.

When the most talkative one met with the second talkative one in my room, the talk flows like Rejang River, continuously days and nights. I just could not figure out how they could have so many things to talk about. On many nights, both of them stayed overnight in NMSC to take care of me, so that they could continue talking.

Both of them are government teachers. They needed to attend government PTK exam during December, 2005, and they determined to study together very hard in my room while taking care of me. Everyday, I was very glad to see them laid out their study material on the bed initially. But to my surprise, before they started to read the first line of the material, they already forgot what they were supposed to do, and started to talk again. They behaved exactly like my sons, who always forgot what they were doing shortly after they started to do their homework, and started to enjoy playing and talking :-)

See you next post :-)

Day +62

I am well today. I would like to continue my story...

It was actually not too bad to get sick in Kuching, Sarawak, because my eldest sister is staying there, and most of my family members are also staying in Bintagor, Sibu and Bintulu of Sarawak. It was easier for them to come to take care of me in Sarawak. Out of 9 brothers and sisters, only my fourth sister, my youngest brother and I are staying in Puchong, Selangor.

My father passed away when I was about 3 years old. I am the second last in the family, and I have 4 brothers and 4 sisters. My mother, as a farmer, had to work very hard to earn a living. Therefore, she didn't have much time to take care of us. So my eldest sister took care of us most of the time. We always discussed with her whenever we needed to make an important decision.

My eldest sister is also a very curious person. She always asked a lot of questions when she saw the doctor, until my brother-in-law felt embarrassed and tried to pull her away :-( Fortunately, the hematologist in NMSC is very smart, gentle, patient and enthusiastic. He spent a great deal of time to answer my sister almost never ending queries. Sometimes, he needed to answer a question many times, because my sister would repeat the same question again the next day, if she didn't understand fully the doctor explanation after careful thinking. And the conversation was done in "Foochow" dialect :-)

Apart from this, she also liked to talk to other patients in the ward and brought back a lot of stories. When she went to visit other patients, my wife and I always said that the "doctor"(my sister) was going for rounding :-).

She is also very careful and talented in taking care of sick persons. She never let anybody apart from my family members to enter my room without wearing mask, gloves and put on hospital cloth. My brothers and sisters who took care of me in the room had to take bath immediately after they entered room. Therefore I could relax most of the time when she was around, without worrying someone would carry infectious elements such as bacteria and virus to my room.

I thank God to have a good sister like this :-)

See you next post :-)

Day +61

My Blood Count Today:
Red Blood Count (RBC) = 106(Normal 130-180)
Platelet = 111(Normal 150-450)
White Blood Count (WBC) = 2.8(Normal 4 - 11)
Absolute Neutrophil Count (ANC) = 1.708 (Normal 1.5 - 8.0)
Potassium = 3.9(Normal 3.5 - 5.2)
Magnesium = 0.58(Normal 0.65 - 1.05)

I am well today. The blood counts did not vary too much compare to last Friday result. Magnesium level was still low, so I was given another magnesium infusion.

The current PICC on my right arm has been servicing me over 6 months. It might be a good cause of infection if it is used for too long, says more than 6 months. Doctor said it should be removed today to prevent infection. If it is removed, doctor or nurse needs to set up intravenous line on my hand for magnesium infusion, which is painful. I requested doctor to postpone the removal to next follow-up. Hopefully, my magnesium level will be normal by then.

Doctor also reduces my follow-up from two times per week to one time per week.

My youngest son, Aaron is now more than 4 months old. He always smiles at me, with his mouth open when he sees me. This shows that I am no longer a stranger to him. Sometimes, he even laughs when I talk to my wife. When I ask him why he laughs, he responds with his language, "Er...Er..." I don't know what does that mean. I will videotape this next time, and ask him to explain to me what he is talking about when he grows up. Hopefully, he can still remember what he says. He he denies it later, I will use this video to prove that he talked to me like that :-)

See you next post :-)

Day +60

I am fine today. Just continue my story…

On the day +8 (7, December), the intravenous antibiotics and normal saline were off. So I was freer to move about as no more drugs need to be administered continuously. I managed to rise from the bed by myself. However, my right hand was still unable to bend due to thrombosis. The thrombosis was only cleared about one month later.

I was given Neupogen injection everyday from day +8 onwards until day +20, the day I was discharged from NMSC.

My brother-in-law purchased me a Christian songs CD called “与信心有约” (An Appointment with Faith). It contains 11 great scriptural songs. One of them which encouraged me very much is called "昂首无惧"(Whom Shall I Fear?). It is based on 3 selected verses in Psalm 27.

Psalm 27:1 "Yahweh is my light and my salvation. Whom shall I fear? Yahweh is the strength of my life. Of whom shall I be afraid?"
Psalm 27:3 "Though an army should encamp against me, my heart shall not fear. Though war should rise against me, even then I will be confident."
Psalm 27:6 "Now my head will be lifted up above my enemies around me. I will offer sacrifices of joy in his tent. I will sing, yes, I will sing praises to Yahweh."

I presented this song in my church a number of times after the chemotherapy. I will sing this song again in the church when I am healthy enough to attend church service. You can download the original song from the CD here.

I made a copy of this CD for one of my friend whom I met in the ward during my 2nd chemotherapy in University Malaya Medical Centre (UH). She was having lymphoma. The tumor affected her nervous system which made her unable to stand up. She and her mother became Christian later. I could sense the change of their life after they became Christian. They were stronger and more positive than before, and the most important thing was that they found hope in God, a hope of eternal life. Her condition became worse during her 5th round of chemotherapy. Eventually, she passed away peacefully with smile while listening to the last song in the CD which is called "新天新地"(A New Heaven and Earth). The song is based on the book of Revelation 27:1,4.

Revelation 21:1 "And I saw a new heaven and a new earth: for the first heaven and the first earth were passed away; and there was no more sea."
Revelation 21:4 "And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away."

On the day she passed away, her mother called me from Ipoh and told me that her daughter’s face shone like an angel. No sorrow but great hope I sensed in her voice, eagerly described to me the situation there.

Am I off topic? It looks like I have too much story to tell. This is the story of a CD that my brother-in-law purchased for me :-)

I will be back to track next post.

See you :-)

Day +59

I am fine today. Let me continue my story…

The 7+3 chemotherapy ends on 6 December, 2005. During this period, my right arm swelled heavily due to blood clot in the arm (thrombosis). I was unable to bend my hand thus unable to rise from the bed without assistance. Most of the time I was lying on the bed, staring at the ceiling :-(

The time passed very slowly. Seeing through the windows, I could see the morning sky, then bright noon sun followed by red evening sky, and finally starry sky. It rained quite often in the afternoon. The nurses came to draw blood sample, to administer drug, to check blood pressure and temperature regularly. The doctors came to see me one or twice a day. Everyday was the same :-(

Apart from the chemo drug, I was infused with normal saline continuously and two types of intravenous antibiotics at regular interval. Blood counts are monitored everyday, and the red blood and platelet were transfused when necessary.

The patient was not discharged immediately after the 7 days chemotherapy. This is because the chemo drugs destroy both the cancerous and healthy cells. So the red blood, platelet and white blood counts will drop greatly after chemotherapy. The patient can be discharged only after the blood counts pick up to an acceptable level again.

As we all know, the red blood cells carry oxygen from the lung to body organs, the platelet is responsible for blood clot and the white blood cells defend the body against infection. Therefore, lacking of red blood cells (anemia) will results in fatigue, lacking of platelet (thrombopenia) results in easy bleeding and lacking of white blood cell (neutropenia) results in easy infection. When the red blood and platelet drop too much, they can be replenished with red blood and platelet transfusion. However, when the white blood count drops too much, there is no such thing as white blood cell transfusion. So infection becomes one of the major risks during chemotherapy. The doctor had to make sure that the patient gets out of neutropenia as soon as possible. This is usually done by injecting a growth factor called Neupogen to stimulate the bone marrow to produce white blood cell.

See you next post :-)

Day +58

My Blood Count Today:
Red Blood Count (RBC) = 104(Normal 130-180)
Platelet = 101(Normal 150-450)
White Blood Count (WBC) = 2.7(Normal 4 - 11)
Absolute Neutrophil Count (ANC) = 1.593 (Normal 1.5 - 8.0)
Potassium = 4.1(Normal 3.5 - 5.2)
Magnesium = 0.57(Normal 0.65 - 1.05)

I am fine today. Since yesterday was Malaysia's 49th National Day, which is a public holiday, I did my follow-up this morning. The blood count result was not very encouraging as most of the readings dropped. The white blood count plumped from 4.0 to 2.7 and the platelet plumped from 141 to 101. The magnesium level was still low, therefore another magnesium infusion was given. It will take some more time for the blood level to come to acceptable level.

I asked doctor if I can start to have some outdoor activities. He advised me not to go to places where there are a lot of people. "What about bookshop?" I asked. He said it is alright for me to visit bookshop during off-peak hour, provided I put on the mask. But I think I should wait for a little bit longer, unless I can find a bookshop with very few or no visitors inside. I am just an ordinary person, without political or social status, therefore no bookshop owner will ever prevent other visitors to go into their shop just because I am inside the shop. However, this does not mean that I got no chance to go to bookshop. A couple from my church is starting a bookshop in Puchong. If they are willing to lend me the bookshop (I mean the whole bookshop, not books only) before the bookshop open for business, then I can enjoy reading books inside the shop alone :-)

My youngest brother, Richard, brought some fruits which look like lychee to me. The skin of the fruit is a lot thicker than lychee. I don't know how to call the fruit, but it is very delicious because I tried it before. Unfortunately, I am not allowed to eat raw food including fruits. Since I was admitted to hospital for transplant, I never eat a single fresh fruit. I did eat papaya harvested from the backyard, but only after the maid fried it. I like to eat fruit every much (Of course, gluttonous person like me like to eat everything edible). Now, the fresh fruits such as durians, rambutans, longans, apples, oranges, bananas and many more only make me "垂涎三尺"(drools with envy) . Tomorrow, I must ask my wife to find a way to cook (boil, steam, fry, toast, bake, stew?) the "lychee" without losing its freshness.

I am too hungry now thinking about the fruits, got to find something to eat.

See you next post :-)