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 +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 +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 +57

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

In NMSC we chose a double bed room, one bed was for me and the others who took care of me. The room was just like a hotel room, quiet, spacious and with attached bath room. I could see mountain and green forest through the windows.

The procedure to insert PICC was scheduled in the morning of 2 December. Before the procedure, the nurse covered my body with a warm and comfortable blanket and then pushed me (to be exact, pushed my bed with me on the bed) to the radiology room. Since my platelet count was still low, I was given platelet transfusion throughout the procedure to prevent excessive bleeding.

In the radiology room, I was transferred to the operation table. This was first time I was laid on the operation table. Even though I was told that this should be a simple procedure which took no longer than half an hour to complete, I still felt anxious and nervous. No matter how smart and strong we are, once we are on the operation table, we will feel that we are weak. The only thing that I could do was kept on praying and recited Bible verses such as Psalm 23.

With the aid of radiology equipment, the radiologist in charge would insert a PICC line through the vein at my upper arm and then follow the vein, all the way up passing through the shoulder and then down again until it reached a place near my heart.

The radiologist identified and marked the vein on my right arm with the aid of ultrasonic equipment. Then he gave Local anesthesia and started to puncture the vein and pushed in the PICC line. No much pain I experienced. On many occasions, the radiologist stopped and mentioned to his assistant that it seemed like something went wrong. This made me nervous again.

At the end the line was fully inserted and a final check only revealed that it was inserted into my artery instead of vein. What an accident? You know, the heart pumps the blood to the artery to be transported to all parts of body. Therefore the blood in the artery is of much higher pressure than of the vein, which returns blood to the heart. The PICC line was then removed immediately. But heavy bleeding occurred at the punctured site. The radiologist and his assistant pressed the artery near my shoulder and elbow firmly to prevent excessive bleeding for at least 20 minutes. At one point he became very nervous when he saw my blood pressure dropped a lot. He requested for extra platelet and also called the hematologist to come. When I saw this, I became very nervous and anxious and my body was shivering continuously.

After 20 minutes, they bandaged my right upper arm tightly, and then started to insert the PICC line on my left arm. I thank God that the line was inserted smoothly this time. However, when they wanted to do clean up job, they noticed that they were unable to take off my cloth. So the only way to take it off was to cut it open :-( Anyway it was the hospital cloth, not my cloth :-)

This thrilling procedure took about 2 hours to complete. We found out later that accident likes this happen rarely. Perhaps I was the only “lucky” one.

After the cleanup job, I was sent back to my room and the third day chemotherapy continued using this newly installed PICC line.

See you next post :-)

Day +56

I am fine today. Continue my story...

On the 1 December, my second day chemotherapy, I decided to continue my treatment in NMSC after my youngest brother and my eldest sister made a second visit to the hematologist there. The doctors in SGH were very cooperative in referring me to NMSC.

Pastor went back to Puchong in the afternoon.

While I was waiting to be transferred to NMSC, a group of doctors and nurses carried out an operation on the patient beside my bed who was in a very bad condition. I was quite surprised that the operation was done in the ward, not the operation theater. They set up a temporary blind between my bed and the patient bed. I could hear very clearly their conversation and the sound of metals knocking each other, but unable to see how they did it.

Unfortunately the poor Iban patient passed away later in the evening. A big group of his relatives swamped into the room like a swarm of bees. Fortunately, my brother-in-law planned for my escape before this happened. So by the time they rushed into the room, I was already outside the room. Else, I could be in a very difficult position in that room with so many people crying, shouting and pushing each other. You might question why the hospital did not control the situation. I believe due to certain reasons, restricting the relatives to enter the room could create more trouble than allowing them.

Immediately after the discharge procedure was completed at about 8:30pm, I was transferred to NMSC by their ambulance. We reached NMSC at about 9:00pm. After that doctor at the emergency department examined me and draw my blood sample, the hematologist came. He further examined me and discussed about my treatment there. He told me that they would fix a Peripherally Inserted Central Catheter (PICC) line for me on the next morning before continuing the chemotherapy. This was the first time I heard of PICC. SGH did not use PICC at that time.

By the time I reached the ward, it was about 11:00pm.

See you next post :-)

Day +55

I am well today. Just continue my story…

After doctor confirmed I had AML on 29 November, 2005, I was moved from the general ward into a double bedded room. But they squeezed 4 beds into the room. The room was so congested until the beds almost touch each other. There was no curtain fixed between the bed either, so the patient had to do everything including passing urine in open space. Apart from this, the room is not air-conditioned. Worse still, there was renovation work going on somewhere nearby my ward. So the room was congested, hot, noisy and without privacy. I believe I came in at the wrong time. The condition should be much better after the renovation.

Despite this undesirable environment, the doctors there were very good. At that time, there was no hematologist in SGH. An oncologist with a team of medical doctors was responsible to treat cancer patients. Even though one of the doctors already explained to me about AML, its treatment and risk involved during chemotherapy, other doctors still asked me if I understood my disease. If I told them I understood already, they would ask me to explain to them what I understood. It was just like an oral test.

On the 30 November, my second sister in Sibu called me and asked me to consider doing my chemotherapy in a private hospital called Normah Specialist Centre (NMSC). So we had to make another decision. My youngest brother and eldest sister went to NMSC to discuss my situation with the hematologist there. In the afternoon, I decided to start the 7 days chemotherapy in SGH.

Before the chemotherapy, my pastor and my wife helped me to take a shower. The bath room is quite far away from the ward. Pastor stayed in the hospital overnight to take care of me. Both my hands were wired for drug infusion, so I really couldn't move much. I needed someone help whenever I need to rise from the bed. The night was really hot and I kept on sweating. I felt a bit regret for not going to NMSC. In an attempt to cool me down, pastor swayed newspaper to create extra wind for me. He must be very tired to act as my "fan".

The first dose of my chemo drug is called Daunorubicin. It was red in colour and was administered through a syringe connected to the intravenous line within a few minutes. After that my urine became red in colour for some time. Following this, another drug called Ara-C was administered through the intravenous line for 12 hours. I would be given Daunorubicin for the first 3 days, and Ara-C throughout the 7 days. Hence we called this therapy a 3+7 induction regimen.

What was my feeling when I started to receive these drugs? Of course, I felt unpleasant to receive them, but nothing much I could do. “Dear Lord, I trust you completely. I leave my life, my family and everything to you. I am weak but you are strong. Please carry me through this ordeal.” I prayed.

See you next post :-)