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 :-)
Thursday, August 31, 2006
Wednesday, August 30, 2006
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 :-)
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 :-)
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 :-)
Monday, August 28, 2006
Day +54
My Blood Count Today:
Red Blood Count (RBC) = 107(Normal 130-180)
Platelet = 141(Normal 150-150)
White Blood Count (WBC) = 4.0(Normal 4 - 11)
Absolute Neutrophil Count (ANC) = 2.6 (Normal 1.5 - 8.0)
Potassium = 4.6(Normal 3.5 - 5.2)
Magnesium = 0.57(Normal 0.65 - 1.05)
I am fine today. For the fist time, the white blood count reaches normal level without the help of "growth factor". I hope the magnesium level will soon comes to normal level as well. With this, I do not need any drug infusion and thus the PICC on my arm can be removed. This PICC has been used for almost 6 months.
My body starts to grow hair now, but it seems to grow on the wrong place. Instead of growing on my "botak"(bald) head, the hair grow on my face first :-( You might think that it is perfectly alright for man to grow mustache and beard, but it is definitely more than that. The hair grows all over my face. As you know, it is quite unusual for me to have hairy face. So what cause it? The culprit is the drug Cyclosporin that I take everyday to prevent GVHD. The doctor told me even female who take the drug will grow mustache and beard and end up with a hairy face.
I met an Allogeneic Transplant friend who is more "senior" than me but only half of my age. The “seniority” here is based on transplant age. Since he did the transplant about 3 months earlier than me, he is considered to be my senior. His hair grow extraordinary thick due to Cyclosporin. When he went for a hair cut, the barber charge him extra RM2 because there are too much hair to cut :-(
Would my hairy body scared off my children? No, no. All of my children like Teddy Bear very much. Now instead of playing with all the Teddy Bears that they have, they can play with a wonderful living toy called Teddy Ba or Kingkong Ba :-)
See you next post :-)
Sunday, August 27, 2006
Day +53
I am fine today :-) Just continue to share my story...
I know this is not a dream, so I have to accept the reality first and then face the challenge. Anyway, life is not a bed of roses, no matter what races you are and what religion you belief. If you belief that Christian should always be healthy, trouble-free and millionaire, read the book of Job in the Bible carefully. This is a very important concept we need to grasp first so that we would be able to accept the reality of suffering and then to face the challenge with God's guidance. Else we would end up to be a miserable man, unable to accept the reality and thus unable to face the challenge.
I am a Christian who trust God and put all my hope in God. I did not respond this life crisis with tears and complaint. And I don't need to question God why this unfortunate even happen to me. What I need to know is that He will guide me through this crisis, no matter what the outcome would be. This promise is recorded in the Bible, “Putting all your troubles on him, for he takes care of you.” I Peter 5:7.
I have faith in God and this faith does not look at the outcome of the disease only, but look at the hand of God. When I fully convinced He will guide me through this ordeal, the outcome of this ordeal becomes a secondary matter. In other word, whether I am cured or not is not so important now. The important thing is that He is holding my hand or even carrying me through my problem.
However, this does not mean that we do not need to pray for a cure, the Bible teach us also to put our requests before God and he will grant us peace of God, which is deeper than all knowledge. “Have no cares, but in everything with prayer and praise put your requests before God. And the peace of God, which is deeper than all knowledge, will keep your hearts and minds in Christ Jesus.” Philips 4:6-7.
The following hymn which I memorize depicts the above belief strongly. The English version can be difficult to understand, I present a Chinese version as well.
He leadeth me! O blessed thought
1. He leadeth me! O blessed thought, O words with heav'nly comfort fraught;
Whate'er I do, where'er I be, Still 'tis Christ's hand that leadeth me.
Chorus:
He leadeth me! He leadeth me! By His own hand He leadeth me;
His faithful follower I would be, For by His hand He leadeth me.
2. Sometimes 'mid scenes of deepest gloom, Sometimes where Eden's bowers bloom,
By waters still, o'er troubled sea, Still 'tis His hand that leadeth me. (to Chorus)
3. Lord, I would clasp Thy hand in mine, Nor ever murmur or repine;
Content, whatever lot I see, Since it is Thou that leadest me. (to Chorus)
4. And when my task on earth is done, When, by Thy grace, the vict'ry's won,
E'en death's cold wave I will not flee, Since Thou in triumph leadest me. (to Chorus)
耶稣领我歌
1. 耶稣领我 我真喜欢 蒙主引导 心中平安
无论日夜 动静起坐 耶稣圣手时常领我
副歌：
耶稣领我 耶稣领我 耶稣天天亲手领我
我愿为主忠实信徒 因蒙主恩时常领我
2. 有时遭遇困苦忧伤 有时大得喜乐安康
无论危险 无论稳妥 全靠耶稣亲手领我（副歌）
3. 我愿紧握恩主圣手 甘心乐意随主行走
遇祸遇福 两般皆可 因有耶稣亲手领我（副歌）
4. 到时行完一世路程 靠托主恩完全得胜
死亡冷河我不怕过 因有耶稣亲手领我（副歌）
See you next post :-)
I know this is not a dream, so I have to accept the reality first and then face the challenge. Anyway, life is not a bed of roses, no matter what races you are and what religion you belief. If you belief that Christian should always be healthy, trouble-free and millionaire, read the book of Job in the Bible carefully. This is a very important concept we need to grasp first so that we would be able to accept the reality of suffering and then to face the challenge with God's guidance. Else we would end up to be a miserable man, unable to accept the reality and thus unable to face the challenge.
I am a Christian who trust God and put all my hope in God. I did not respond this life crisis with tears and complaint. And I don't need to question God why this unfortunate even happen to me. What I need to know is that He will guide me through this crisis, no matter what the outcome would be. This promise is recorded in the Bible, “Putting all your troubles on him, for he takes care of you.” I Peter 5:7.
I have faith in God and this faith does not look at the outcome of the disease only, but look at the hand of God. When I fully convinced He will guide me through this ordeal, the outcome of this ordeal becomes a secondary matter. In other word, whether I am cured or not is not so important now. The important thing is that He is holding my hand or even carrying me through my problem.
However, this does not mean that we do not need to pray for a cure, the Bible teach us also to put our requests before God and he will grant us peace of God, which is deeper than all knowledge. “Have no cares, but in everything with prayer and praise put your requests before God. And the peace of God, which is deeper than all knowledge, will keep your hearts and minds in Christ Jesus.” Philips 4:6-7.
The following hymn which I memorize depicts the above belief strongly. The English version can be difficult to understand, I present a Chinese version as well.
He leadeth me! O blessed thought
1. He leadeth me! O blessed thought, O words with heav'nly comfort fraught;
Whate'er I do, where'er I be, Still 'tis Christ's hand that leadeth me.
Chorus:
He leadeth me! He leadeth me! By His own hand He leadeth me;
His faithful follower I would be, For by His hand He leadeth me.
2. Sometimes 'mid scenes of deepest gloom, Sometimes where Eden's bowers bloom,
By waters still, o'er troubled sea, Still 'tis His hand that leadeth me. (to Chorus)
3. Lord, I would clasp Thy hand in mine, Nor ever murmur or repine;
Content, whatever lot I see, Since it is Thou that leadest me. (to Chorus)
4. And when my task on earth is done, When, by Thy grace, the vict'ry's won,
E'en death's cold wave I will not flee, Since Thou in triumph leadest me. (to Chorus)
耶稣领我歌
1. 耶稣领我 我真喜欢 蒙主引导 心中平安
无论日夜 动静起坐 耶稣圣手时常领我
副歌：
耶稣领我 耶稣领我 耶稣天天亲手领我
我愿为主忠实信徒 因蒙主恩时常领我
2. 有时遭遇困苦忧伤 有时大得喜乐安康
无论危险 无论稳妥 全靠耶稣亲手领我（副歌）
3. 我愿紧握恩主圣手 甘心乐意随主行走
遇祸遇福 两般皆可 因有耶稣亲手领我（副歌）
4. 到时行完一世路程 靠托主恩完全得胜
死亡冷河我不怕过 因有耶稣亲手领我（副歌）
See you next post :-)
Day +52
I am fine today.
I never thought that I would be so “lucky” to have this AML, a disease which seems so strange to me, but suddenly is inside me. I never buy lottery or 4D throughout my life, but I did participate in many lucky draw and competition which require luck to win. Apart from winning a second prize lucky draw which consists of air tickets for two persons from Miri to Mulu National Park more than 10 years ago, I never win any other prizes. In fact, the chance of getting AML is quite small, it may be as little as a few persons among 100,000. So getting this disease is just like winning a 2 million ringgit first prize TOTO 6/42 jackpot without even putting a bet on it.
How I wish this is just a bad dream where I could just settle every problem in the dream, no matter how critical it is, by waking up from the dream. I believe everyone experience some bad dream occasionally. A dream such as forgot to prepare for exam, lost in the jungle, family member kidnapped or falling down from very high altitudes. When we wake up, we would say to ourselves, "What a relief, it is just a dream." Then we don't have to be troubled by whatever problem in the dream, unless we are looking for trouble.
See you next post:-)
I never thought that I would be so “lucky” to have this AML, a disease which seems so strange to me, but suddenly is inside me. I never buy lottery or 4D throughout my life, but I did participate in many lucky draw and competition which require luck to win. Apart from winning a second prize lucky draw which consists of air tickets for two persons from Miri to Mulu National Park more than 10 years ago, I never win any other prizes. In fact, the chance of getting AML is quite small, it may be as little as a few persons among 100,000. So getting this disease is just like winning a 2 million ringgit first prize TOTO 6/42 jackpot without even putting a bet on it.
How I wish this is just a bad dream where I could just settle every problem in the dream, no matter how critical it is, by waking up from the dream. I believe everyone experience some bad dream occasionally. A dream such as forgot to prepare for exam, lost in the jungle, family member kidnapped or falling down from very high altitudes. When we wake up, we would say to ourselves, "What a relief, it is just a dream." Then we don't have to be troubled by whatever problem in the dream, unless we are looking for trouble.
See you next post:-)
Friday, August 25, 2006
Day +51
I am well today.
It rains heavily now. The rain should settle down the dust in the air. So for the first time since my transplant, I can open the windows and stretch out my head through the windows to breathe some fresh air. This air is really fresh. The air filter in my room could never produce fresh air as fresh as the after-rain air outside the house.
This rain is really a blessing to me. Apart from being able to breathe fresh air, I would also be able to turn off the air-conditioner and sleep with windows open tonight. Furthermore, I should wake up early tomorrow morning to go outside my house to breathe more fresh air:-)
See you next post:-)
It rains heavily now. The rain should settle down the dust in the air. So for the first time since my transplant, I can open the windows and stretch out my head through the windows to breathe some fresh air. This air is really fresh. The air filter in my room could never produce fresh air as fresh as the after-rain air outside the house.
This rain is really a blessing to me. Apart from being able to breathe fresh air, I would also be able to turn off the air-conditioner and sleep with windows open tonight. Furthermore, I should wake up early tomorrow morning to go outside my house to breathe more fresh air:-)
See you next post:-)
Thursday, August 24, 2006
Day +50
My Blood Count Today:
Red Blood Count (RBC) = 108(Normal 130-180)
Platelet = 119(Normal 150-150)
White Blood Count (WBC) = 2.7(Normal 4 - 11)
Absolute Neutrophil Count (ANC) = 1.404 (Normal 1.5 - 8.0)
Potassium = 4.0(Normal 3.5 - 5.2)
Magnesium = 0.51(Normal 0.65 - 1.05)
The blood counts except magnesium are quite normal. I received another magnesium infusion.
It has been nearly two months I stayed in the air-conditioned room 24 hours a day, 7 days a week. How I wish I could escape from this room or open the windows, at least once in a while. It is not because I have nothing to do in this room, but because I would like to breathe some fresh air especially those early morning air. When I go to hospital, I am outside the room but I could not enjoy fresh air because my nose is covered with mask. When I am inside my room, I could not enjoy fresh air either because all the windows are closed. So the conclusion is no matter which side I am in, I could not enjoy fresh air. May be I need to find some more “sides” apart from inside and outside where I could possibly enjoy fresh air. I think two other possible sides could be “upside” and “downside”:-)
Staying in this air-conditioned room 24 hours a day not only increase my electricity bill (to be exactly my wife electricity bill) sharply, but also cause skin dryness which persist even I "sapu"(apply) QV cream twice a day. I asked doctor and BMT nurse whether it is alright for me to open the windows, at least at night. They asked me to describe what are outside my windows. Since I am staying in the first floor at the back side of my house, I see the back side of another house. This terrace house is arranged back to back. Apart from this, I see a papaya tree at the back of my house which is as high as the window now. So if I want fresh papaya, I can just pluck it from my room through the window:-) But unfortunately, I still cannot eat fresh fruits unless they are cooked. In addition to this, there is construction going on at the hill side one or two km away from my house. With this information, they concluded that I should not open the windows at any time because of the construction which could bring in dust that contains fungus.
When I was well I seldom realize that it is in fact a privilege to be able to breathe unlimited amount of fresh air free of charge. We tend to take everything for granted when we are well. The first thing that I would do when I am allowed to go outside to breathe some fresh air is to thank God, for his grace and generosity.
If you are interested, you can download the classical guitar competition piece that I recorded here. It is Carcassi Etude No. 3. My cute and sweet wife commented that the melody line is not too clear. I totally agree with her, but it is quite difficult for me to correct it in time especially with my trembling hand. You see, she is not only my wife, but also my music teacher, specializing in musical mood and expression. If not beause of her guidance, I would still play music as mechanical as robot:-)
See you next post:-)
Red Blood Count (RBC) = 108(Normal 130-180)
Platelet = 119(Normal 150-150)
White Blood Count (WBC) = 2.7(Normal 4 - 11)
Absolute Neutrophil Count (ANC) = 1.404 (Normal 1.5 - 8.0)
Potassium = 4.0(Normal 3.5 - 5.2)
Magnesium = 0.51(Normal 0.65 - 1.05)
The blood counts except magnesium are quite normal. I received another magnesium infusion.
It has been nearly two months I stayed in the air-conditioned room 24 hours a day, 7 days a week. How I wish I could escape from this room or open the windows, at least once in a while. It is not because I have nothing to do in this room, but because I would like to breathe some fresh air especially those early morning air. When I go to hospital, I am outside the room but I could not enjoy fresh air because my nose is covered with mask. When I am inside my room, I could not enjoy fresh air either because all the windows are closed. So the conclusion is no matter which side I am in, I could not enjoy fresh air. May be I need to find some more “sides” apart from inside and outside where I could possibly enjoy fresh air. I think two other possible sides could be “upside” and “downside”:-)
Staying in this air-conditioned room 24 hours a day not only increase my electricity bill (to be exactly my wife electricity bill) sharply, but also cause skin dryness which persist even I "sapu"(apply) QV cream twice a day. I asked doctor and BMT nurse whether it is alright for me to open the windows, at least at night. They asked me to describe what are outside my windows. Since I am staying in the first floor at the back side of my house, I see the back side of another house. This terrace house is arranged back to back. Apart from this, I see a papaya tree at the back of my house which is as high as the window now. So if I want fresh papaya, I can just pluck it from my room through the window:-) But unfortunately, I still cannot eat fresh fruits unless they are cooked. In addition to this, there is construction going on at the hill side one or two km away from my house. With this information, they concluded that I should not open the windows at any time because of the construction which could bring in dust that contains fungus.
When I was well I seldom realize that it is in fact a privilege to be able to breathe unlimited amount of fresh air free of charge. We tend to take everything for granted when we are well. The first thing that I would do when I am allowed to go outside to breathe some fresh air is to thank God, for his grace and generosity.
If you are interested, you can download the classical guitar competition piece that I recorded here. It is Carcassi Etude No. 3. My cute and sweet wife commented that the melody line is not too clear. I totally agree with her, but it is quite difficult for me to correct it in time especially with my trembling hand. You see, she is not only my wife, but also my music teacher, specializing in musical mood and expression. If not beause of her guidance, I would still play music as mechanical as robot:-)
See you next post:-)
Day +49
I am fine today.
I am very busy recording, editing and submitting the classical guitar pieces for competition. Just completed everything.
Now is 12:30am, have to wake up at 6:15am later to go to hospital for followup.
I recorded a piece called Maria Luisa composed by Sagreras. You can download it here if you would like to listen to the piece.
See you:-)
I am very busy recording, editing and submitting the classical guitar pieces for competition. Just completed everything.
Now is 12:30am, have to wake up at 6:15am later to go to hospital for followup.
I recorded a piece called Maria Luisa composed by Sagreras. You can download it here if you would like to listen to the piece.
See you:-)
Wednesday, August 23, 2006
Day +48
I am fine today. I would like to continue my story...
The arrival of Pastor and my youngest brother helped me and my sister a lot. They helped to take care of me, pray for me and participated in many decisions related to my treatment. My wife was about 5 months pregnant at that time, so it was not convenient for her to stay in the hospital to take care of me. At that time many Christians in many churches started to support me through prayer.
The result of BMA was out on the 30, November 2005. The doctor told me that I had Acute Myeloid Leukaemia (AML), subtype M4. The French-American-British (FAB) classification divides AML into 8 subtypes, from M0 to M7. The doctor also said that my type of Leukaemia is easier to cure. She then explained to me how they were going to treat me and the risk involved in the treatment.
When I got my blood report on the 28 November, I know my family and I were going to face another crisis. I had been through many crises in life, mostly related to my family members, but this time it directly involved me and the BMA result again confirmed this.
The first reaction came to everyone mind was, “Why I get this disease?” The doctor said we know very little about the cause of Leukaemia apart from exposure to radioactive radiation and certain chemical such as benzene. No one was satisfied with this answer, so everyone started to speculate how this disease developed.
“It must be your diet…” to them all diseases are due to food.
“It must be the computer…” because I worked in front of computer 10 hours a day.
“It must be the handpone…” they suspected electromagnetic field is the culprit.
“It must be you work so hard…” because I worked harder than most of the staff.
“It must be a trial from God…” some Christian said.
“It must be you lack of exercise…” those who believed the body would secrete toxin through sweating.
“It must be due to accumulation of toxin in your body” those who believed some form of detoxification can prevent or cure all diseases.
“It must be due to too much stress…” someone said.
“It must be…”
Suddenly I was surrounded by a group of experts who knew the causes of the Leukaemia better than anyone else. I started to wonder how they could be more expert than the doctors and specialist. The first reason is the establishment of a lot of Multilevel Marketing (MLM) companies that sell “magic products” that claimed to kill all birds with one stone. The best strategy to sell the products is to tell you that you body accumulated too much toxins, it is too dangerous if you don't detoxify your body with their products. Driven by the dream of becoming financial independency within a short period of time and the promise of enjoying continuous effortless income for the generations to come, the MLM agents will penetrate every level of societies with the concept of body toxification and the necessity of detoxification. The 2nd reason is due to some very good public speakers who advocate natural therapy or alternative medicine, who always find their way into mass media to propagate their ideas. The public, including me when I first get exposed to this alternative medicine, would then take everything they speak as truth because they can speak very well and their points seem to be very reasonable.
Someone even advised me to abandon this conventional treatment and to go for alternative treatment because they heard someone get healed with this alternative treatment. I felt that it is too risky to go for alternative treatment just based on some isolated cases. So I asked for statistics such as percentage of a cure of AML with any form of alternative treatment, but no one could provide it to me. So I concluded it is more risky to go for alternative treatment than conventional treatment.
One thing I need to clarify is that I am not in anyway against the concept of natural therapy or alternative medicine, and also whatever products. I believe many of the concepts are very helpful to maintain a healthy living. But we also cannot take everything that they advocate as absolutely true as most of them claimed. If you start to read more and analyze carefully, your will soon find many contractions among them and many claims are based on very weak reasoning.
As a patient who is just diagnosed with cancer and struggling to accept the reality, expert ideas like these do not in any mean help him/her. It only brings more confusion to him/her. I believe I am not the only one who encountered this. Most of the patients should also experience this.
See you next post:-)
The arrival of Pastor and my youngest brother helped me and my sister a lot. They helped to take care of me, pray for me and participated in many decisions related to my treatment. My wife was about 5 months pregnant at that time, so it was not convenient for her to stay in the hospital to take care of me. At that time many Christians in many churches started to support me through prayer.
The result of BMA was out on the 30, November 2005. The doctor told me that I had Acute Myeloid Leukaemia (AML), subtype M4. The French-American-British (FAB) classification divides AML into 8 subtypes, from M0 to M7. The doctor also said that my type of Leukaemia is easier to cure. She then explained to me how they were going to treat me and the risk involved in the treatment.
When I got my blood report on the 28 November, I know my family and I were going to face another crisis. I had been through many crises in life, mostly related to my family members, but this time it directly involved me and the BMA result again confirmed this.
The first reaction came to everyone mind was, “Why I get this disease?” The doctor said we know very little about the cause of Leukaemia apart from exposure to radioactive radiation and certain chemical such as benzene. No one was satisfied with this answer, so everyone started to speculate how this disease developed.
“It must be your diet…” to them all diseases are due to food.
“It must be the computer…” because I worked in front of computer 10 hours a day.
“It must be the handpone…” they suspected electromagnetic field is the culprit.
“It must be you work so hard…” because I worked harder than most of the staff.
“It must be a trial from God…” some Christian said.
“It must be you lack of exercise…” those who believed the body would secrete toxin through sweating.
“It must be due to accumulation of toxin in your body” those who believed some form of detoxification can prevent or cure all diseases.
“It must be due to too much stress…” someone said.
“It must be…”
Suddenly I was surrounded by a group of experts who knew the causes of the Leukaemia better than anyone else. I started to wonder how they could be more expert than the doctors and specialist. The first reason is the establishment of a lot of Multilevel Marketing (MLM) companies that sell “magic products” that claimed to kill all birds with one stone. The best strategy to sell the products is to tell you that you body accumulated too much toxins, it is too dangerous if you don't detoxify your body with their products. Driven by the dream of becoming financial independency within a short period of time and the promise of enjoying continuous effortless income for the generations to come, the MLM agents will penetrate every level of societies with the concept of body toxification and the necessity of detoxification. The 2nd reason is due to some very good public speakers who advocate natural therapy or alternative medicine, who always find their way into mass media to propagate their ideas. The public, including me when I first get exposed to this alternative medicine, would then take everything they speak as truth because they can speak very well and their points seem to be very reasonable.
Someone even advised me to abandon this conventional treatment and to go for alternative treatment because they heard someone get healed with this alternative treatment. I felt that it is too risky to go for alternative treatment just based on some isolated cases. So I asked for statistics such as percentage of a cure of AML with any form of alternative treatment, but no one could provide it to me. So I concluded it is more risky to go for alternative treatment than conventional treatment.
One thing I need to clarify is that I am not in anyway against the concept of natural therapy or alternative medicine, and also whatever products. I believe many of the concepts are very helpful to maintain a healthy living. But we also cannot take everything that they advocate as absolutely true as most of them claimed. If you start to read more and analyze carefully, your will soon find many contractions among them and many claims are based on very weak reasoning.
As a patient who is just diagnosed with cancer and struggling to accept the reality, expert ideas like these do not in any mean help him/her. It only brings more confusion to him/her. I believe I am not the only one who encountered this. Most of the patients should also experience this.
See you next post:-)
Monday, August 21, 2006
Day +47
My Blood Count Today:
Red Blood Count (RBC) = 104(Normal 130-180)
Platelet = 136(Normal 150-150)
White Blood Count (WBC) = 2.9(Normal 4 - 11)
Absolute Neutrophil Count (ANC) = 1.566 (Normal 1.5 - 8.0)
Potassium = 3.9(Normal 3.5 - 5.2)
Magnesium = 0.48(Normal 0.65 - 1.05)
I am well today. Generally the blood result is normal, except the magnesium level, which is still too low. The nurse gave me another magnesium infusion. The white blood count dropped from 8.6 to 2.9, but the ANC is still within the normal range, though it is on the lower end.
I am going to participate in a classical guitar competition in China. The scope is any one of the 25 Carcassi Etudes. The question is I have to be isolated or avoid crowd and I have to attend the competition in China. How am I going to achieve this? Very easy, record the classical guitar piece and upload it to the web site which organizes this competition. Everything can be done in this isolated room:-)
I am now busy practicing the competition piece and also learn to record the piece using computer. Even though I choose a very simple piece to play, but it is still extremely difficult for me to play it well. The reason is that the medicine, Cyclosporin, that prevents GVHD makes my hand trembles very much. Now my right hand is just like a tame horse gone wild, jumping up and down, ignoring all my command. I wanted to pluck the first string, the finger plucks the 2nd string. I wanted to pluck the 2nd string, the finger plucks the "air", miss to pluck any string completely:-(
You see I am not as fortunate as our prime minister, Pak Lah. When he was criticized, all his subordinates supported him unconditionally because he is “head”. But now my hands don't listen to my head because the Cyclosporin "critizes" me, and someone might thus takes advantages of me:-(
See you next post:-)
Red Blood Count (RBC) = 104(Normal 130-180)
Platelet = 136(Normal 150-150)
White Blood Count (WBC) = 2.9(Normal 4 - 11)
Absolute Neutrophil Count (ANC) = 1.566 (Normal 1.5 - 8.0)
Potassium = 3.9(Normal 3.5 - 5.2)
Magnesium = 0.48(Normal 0.65 - 1.05)
I am well today. Generally the blood result is normal, except the magnesium level, which is still too low. The nurse gave me another magnesium infusion. The white blood count dropped from 8.6 to 2.9, but the ANC is still within the normal range, though it is on the lower end.
I am going to participate in a classical guitar competition in China. The scope is any one of the 25 Carcassi Etudes. The question is I have to be isolated or avoid crowd and I have to attend the competition in China. How am I going to achieve this? Very easy, record the classical guitar piece and upload it to the web site which organizes this competition. Everything can be done in this isolated room:-)
I am now busy practicing the competition piece and also learn to record the piece using computer. Even though I choose a very simple piece to play, but it is still extremely difficult for me to play it well. The reason is that the medicine, Cyclosporin, that prevents GVHD makes my hand trembles very much. Now my right hand is just like a tame horse gone wild, jumping up and down, ignoring all my command. I wanted to pluck the first string, the finger plucks the 2nd string. I wanted to pluck the 2nd string, the finger plucks the "air", miss to pluck any string completely:-(
You see I am not as fortunate as our prime minister, Pak Lah. When he was criticized, all his subordinates supported him unconditionally because he is “head”. But now my hands don't listen to my head because the Cyclosporin "critizes" me, and someone might thus takes advantages of me:-(
See you next post:-)
Sunday, August 20, 2006
Day +46
I am well today. I would like to continue my story :-)
After knowing I was admitted to SGH, my sister came back from Bintulu to Kuching on the next available flight, without attending the wedding banquet. She supposed to go sightseeing there for a few more days.
The doctor who examined me in the emergency ward asked me a lot of questions. All questions were related to my lifestyle and my family background. He then admitted me to the general ward. A "RIB"(Rest in Bed) sign was hung on my bed and I was advised not to leave my bed.
My brother-in-law who sent me to the hospital went home after he handled the admission procedure for me and I settled down in the ward. At 10:00pm, I felt I would like to pass urine. But I was not allowed to leave the bed, and I could not find the urine container underneath the bed either. Coincidently there was no nurse around at that time, so I tried to call the nurse, but unfortunately there was no nurse call system available. I really didn't know what to do.
Suddenly, my eldest sister appeared and I was so relieved. I thank God to bring her in just at the right time to help me, else I have to "tahan"(endure) don't know for how long.
On the night, I was also given platelet transfusion. After the transfusion, the urine was cleared of blood and my taste also restored. Before that, the water that I drank had a very funny taste.
The doctor told me that they were going to do a bone marrow aspiration (BMA) for me as soon as possible to determine the exact type of blood disease that I had. When I heard this, I was quite scared because I heard from my 2nd brother that this BMA is really painful. He was diagnosed with bacterial meningitis and was under very serious condition more than 10 years ago. We, together with many other Christians prayed for him very hard and eventually he was completely healed of the disease. Later I realized that he was actually having spinal fluid extraction, not BMA.
I did my first BMA on the morning of 29, November. The doctor put me to sleep first before doing the BMA, so it was not as painfully as I expected.
After I waked up, I saw my youngest brother together with my pastor at my bed side. They just arrived from Puchong to visit me.
See you next post"-)
After knowing I was admitted to SGH, my sister came back from Bintulu to Kuching on the next available flight, without attending the wedding banquet. She supposed to go sightseeing there for a few more days.
The doctor who examined me in the emergency ward asked me a lot of questions. All questions were related to my lifestyle and my family background. He then admitted me to the general ward. A "RIB"(Rest in Bed) sign was hung on my bed and I was advised not to leave my bed.
My brother-in-law who sent me to the hospital went home after he handled the admission procedure for me and I settled down in the ward. At 10:00pm, I felt I would like to pass urine. But I was not allowed to leave the bed, and I could not find the urine container underneath the bed either. Coincidently there was no nurse around at that time, so I tried to call the nurse, but unfortunately there was no nurse call system available. I really didn't know what to do.
Suddenly, my eldest sister appeared and I was so relieved. I thank God to bring her in just at the right time to help me, else I have to "tahan"(endure) don't know for how long.
On the night, I was also given platelet transfusion. After the transfusion, the urine was cleared of blood and my taste also restored. Before that, the water that I drank had a very funny taste.
The doctor told me that they were going to do a bone marrow aspiration (BMA) for me as soon as possible to determine the exact type of blood disease that I had. When I heard this, I was quite scared because I heard from my 2nd brother that this BMA is really painful. He was diagnosed with bacterial meningitis and was under very serious condition more than 10 years ago. We, together with many other Christians prayed for him very hard and eventually he was completely healed of the disease. Later I realized that he was actually having spinal fluid extraction, not BMA.
I did my first BMA on the morning of 29, November. The doctor put me to sleep first before doing the BMA, so it was not as painfully as I expected.
After I waked up, I saw my youngest brother together with my pastor at my bed side. They just arrived from Puchong to visit me.
See you next post"-)
Saturday, August 19, 2006
Day +45
I am fine today. My wife make some every nice steam bun today with tuna, long beam and peanut filling. I have them for dinner and they are really delicious.
The diagnosis of this disease was not very straight forward. The first symptom appeared as rashes on the arms and legs early November last year. Because I just enjoyed seafood with some of our church members and our visitors from Hong Kong, I thought the rashes might be due to seafood allergy. In fact, this was my ignorant as I had no history of seafood allergy before. Furthermore the rashes were not raised and not itchy at all. It was actually due to bleeding under the skin because of low platelet, a condition called petechiae.
Other than the rashes, my health looked normal. I still went for jogging very morning and worked very hard. As my family and I prepared to go back to Sarawak for holiday, my company’s software development source code management system went completely haywire. In order to fix the problem, I worked 3 days overnight until the morning of 15 November, the day we traveled back to Bintangor.
We visited my 2nd sister in Sibu, my wife family in Sarikei, my 3rd sister (stem cell donor) which is not far from my mother house and many other relatives. Most of the time we stayed at my elder brothers house in a kampung”(Village) called Sungei Mador, the house where all my family members stayed before we have our own family. It is somewhere between Sibu and Sarikei. The children enjoyed kampung life very much. They managed to play with the dog and rabbits, chased the chickens and ducks, went for fishing, played sand, visited pepper and orange farms and experienced many other new thing.
After one week staying in the kampung, on the day we would like to fly to Kuching, I developed sore throat with blood in the phlegm. My wife and I went to see a doctor in Sarikei. This doctor speaks Foochow and called, “Ah Kiew, Ah Kiew, come.” He called me like my wife or my family member called me. After examining my throat, he said, “You have acute throat inflammation. Why you come so late?” But I did not experience any pain as when I had acute throat inflammation before. He asked me to swallow an antibiotic tablet in the clinic immediately and prescribed a 5 days course of antibiotic to me. I showed him the rashes but he was unable to link it to blood problem.
So I flied to Kuching happily with my family, my 2nd sister family and of course the antibiotic. We stayed at my eldest sister house for one night, then we all went to Holiday Inn Damai Beach Resort for 3 days and 2 nights. A very nice place, both the children and the adults enjoy very much there. Without knowing I was going to be diagnosed with Leukaemia, I was also very happy there.
Soon I finished the antibiotic but my sore throat did not seem to improve. So my eldest sister brought me to the see an ENT specialist in Kuching. He prescribed me another course of “better” antibiotic. And on the same day we went to see a Chinese Traditional Doctor, she asked me to throw away the antibiotic from the ENT and took her medicine. She guaranteed that my throat condition will be improved within 2 days. Both doctors were unable to link the rashes and the throat bleeding problem to blood problem either.
I put aside the Chinese medicine and started to take antibiotic from the ENT specialist. At that time, I felt very tired. After two days, I noticed my urine was red in colour and I suspected there must be bleeding at some part of my urinary organ. So I went to see another doctor, and he was able to identify the problem immediately. A blood test was done and on the next day, 28 November, it was confirmed that I had some form of blood disease as the platelet was extremely low and the white blood count was very high. You can see here the diagnosis is not so straight forward as it took about 2 weeks for 4 doctors to relate my problem to some form of blood disease.
My sisters went to Bintulu on 27 November to attend a wedding party of one of my relatives . So I asked the doctor to refer me to Sarawak General Hospital (SGH) for further treatment without consulting with my sisters.
On the evening of 28 November, I was admitted to SGH. Without much choice, the holiday had to be prolonged and I cancelled the flight back to KLIA on 29 November.
The diagnosis of this disease was not very straight forward. The first symptom appeared as rashes on the arms and legs early November last year. Because I just enjoyed seafood with some of our church members and our visitors from Hong Kong, I thought the rashes might be due to seafood allergy. In fact, this was my ignorant as I had no history of seafood allergy before. Furthermore the rashes were not raised and not itchy at all. It was actually due to bleeding under the skin because of low platelet, a condition called petechiae.
Other than the rashes, my health looked normal. I still went for jogging very morning and worked very hard. As my family and I prepared to go back to Sarawak for holiday, my company’s software development source code management system went completely haywire. In order to fix the problem, I worked 3 days overnight until the morning of 15 November, the day we traveled back to Bintangor.
We visited my 2nd sister in Sibu, my wife family in Sarikei, my 3rd sister (stem cell donor) which is not far from my mother house and many other relatives. Most of the time we stayed at my elder brothers house in a kampung”(Village) called Sungei Mador, the house where all my family members stayed before we have our own family. It is somewhere between Sibu and Sarikei. The children enjoyed kampung life very much. They managed to play with the dog and rabbits, chased the chickens and ducks, went for fishing, played sand, visited pepper and orange farms and experienced many other new thing.
After one week staying in the kampung, on the day we would like to fly to Kuching, I developed sore throat with blood in the phlegm. My wife and I went to see a doctor in Sarikei. This doctor speaks Foochow and called, “Ah Kiew, Ah Kiew, come.” He called me like my wife or my family member called me. After examining my throat, he said, “You have acute throat inflammation. Why you come so late?” But I did not experience any pain as when I had acute throat inflammation before. He asked me to swallow an antibiotic tablet in the clinic immediately and prescribed a 5 days course of antibiotic to me. I showed him the rashes but he was unable to link it to blood problem.
So I flied to Kuching happily with my family, my 2nd sister family and of course the antibiotic. We stayed at my eldest sister house for one night, then we all went to Holiday Inn Damai Beach Resort for 3 days and 2 nights. A very nice place, both the children and the adults enjoy very much there. Without knowing I was going to be diagnosed with Leukaemia, I was also very happy there.
Soon I finished the antibiotic but my sore throat did not seem to improve. So my eldest sister brought me to the see an ENT specialist in Kuching. He prescribed me another course of “better” antibiotic. And on the same day we went to see a Chinese Traditional Doctor, she asked me to throw away the antibiotic from the ENT and took her medicine. She guaranteed that my throat condition will be improved within 2 days. Both doctors were unable to link the rashes and the throat bleeding problem to blood problem either.
I put aside the Chinese medicine and started to take antibiotic from the ENT specialist. At that time, I felt very tired. After two days, I noticed my urine was red in colour and I suspected there must be bleeding at some part of my urinary organ. So I went to see another doctor, and he was able to identify the problem immediately. A blood test was done and on the next day, 28 November, it was confirmed that I had some form of blood disease as the platelet was extremely low and the white blood count was very high. You can see here the diagnosis is not so straight forward as it took about 2 weeks for 4 doctors to relate my problem to some form of blood disease.
My sisters went to Bintulu on 27 November to attend a wedding party of one of my relatives . So I asked the doctor to refer me to Sarawak General Hospital (SGH) for further treatment without consulting with my sisters.
On the evening of 28 November, I was admitted to SGH. Without much choice, the holiday had to be prolonged and I cancelled the flight back to KLIA on 29 November.
Friday, August 18, 2006
Day +44
I am fine today.
I live in Puchong, Selangor but I did my first chemotherapy in Kuching, Sarawak on the 30, November, 2005. Selangor is located in West Malaysia and Sarawak is located in East Malaysia. These two states are separated by South China Sea and they are more than 1000km apart. So the only practical way to travel between these two places is by plane.
You might wonder why I took all the trouble to travel over 1000km away to do my first chemotherapy. But I can tell you that I am definitely not a troublesome man like this. The reason is that my family and I were having holiday in Kuching November last year and I was diagnosed with this disease just one day before our scheduled flight back to Kuala Lumpur International Airport(KLIA). At that time, my white blood count is extremely high and the platelet is very low, the nurse hung a sign board with the word "RIB"(Rest in Bed) on my bed immediately after admission. With this "RIB" sign, I was not allowed to leave my bed. How could I fly back to KLIA without leaving the bed? The only way that I could do this was to carry the bed with me, but you know I had no strength to do this at all even before I was sick:-(
Therefore the only choice was to stay back to do the chemotherapy in Kuching.
To be continue...
See you next post.
I live in Puchong, Selangor but I did my first chemotherapy in Kuching, Sarawak on the 30, November, 2005. Selangor is located in West Malaysia and Sarawak is located in East Malaysia. These two states are separated by South China Sea and they are more than 1000km apart. So the only practical way to travel between these two places is by plane.
You might wonder why I took all the trouble to travel over 1000km away to do my first chemotherapy. But I can tell you that I am definitely not a troublesome man like this. The reason is that my family and I were having holiday in Kuching November last year and I was diagnosed with this disease just one day before our scheduled flight back to Kuala Lumpur International Airport(KLIA). At that time, my white blood count is extremely high and the platelet is very low, the nurse hung a sign board with the word "RIB"(Rest in Bed) on my bed immediately after admission. With this "RIB" sign, I was not allowed to leave my bed. How could I fly back to KLIA without leaving the bed? The only way that I could do this was to carry the bed with me, but you know I had no strength to do this at all even before I was sick:-(
Therefore the only choice was to stay back to do the chemotherapy in Kuching.
To be continue...
See you next post.
Thursday, August 17, 2006
Day +43
My Blood Count Today:
Red Blood Count (RBC) = 105(Normal 130-180)
Platelet = 146(Normal 150-150)
White Blood Count (WBC) = 8.6(Normal 4 - 11)
Absolute Neutrophil Count (ANC) = 7.052 (Normal 1.5 - 8.0)
Potassium = 3.9(Normal 3.5 - 5.2)
Magnesium = 0.53(Normal 0.65 - 1.05)
I am fine today. The white blood count and ANC is high due to growth factor injection on Monday. It will be interesting to know how much these values will drop on the next followup. The magnesium level is better than last followup which is only 0.47, so another magnesium infusion was given.
You might be wondering why I am so "贪吃"(gluttonous), never stop talking about food. Indeed I am the most gluttonous member in my family when I was small. We were so poor that we just could not afford to buy even sweets, not to say other more delicious food like biscuit or chocolate. I read something about chocolate in the story book while I was studying in primary school but just could not imagine how it looks like or tastes like. The only way I could get a chance to eat some delicious food was to visit other families in the "kampung"(village) frequently, hopefully they would share with me something nice to eat. At the end, I became the most gluttonous boy, not only in my family, but also in the "kampung".
But I think you are also gluttonous because you, like me, also never stop eating everyday. You work five days a week, but eat seven days a week. You tend to forget many thing but never forget eating. You may not be so punctual in many thing but always punctual in eating. When you want to have some reunion gathering with your friends, you always end up eating in restaurant.
Full moon, eat.
Birthday, eat.
Wedding, eat.
Aniversary, eat.
Valentine day, eat.
Gathering, eat.
Celebrations, eat.
Funeral, eat.
Eat, eat, eat..., from birth until the very last day in this world.
"民以食为天也！" (Eating is heaven)
Are you convinced now you are also gluttonous?
But Bible says, "Man shall not live by bread alone, but by every word that proceeds out of the mouth of God." Matthew 4:4
See you next post:-)
Red Blood Count (RBC) = 105(Normal 130-180)
Platelet = 146(Normal 150-150)
White Blood Count (WBC) = 8.6(Normal 4 - 11)
Absolute Neutrophil Count (ANC) = 7.052 (Normal 1.5 - 8.0)
Potassium = 3.9(Normal 3.5 - 5.2)
Magnesium = 0.53(Normal 0.65 - 1.05)
I am fine today. The white blood count and ANC is high due to growth factor injection on Monday. It will be interesting to know how much these values will drop on the next followup. The magnesium level is better than last followup which is only 0.47, so another magnesium infusion was given.
You might be wondering why I am so "贪吃"(gluttonous), never stop talking about food. Indeed I am the most gluttonous member in my family when I was small. We were so poor that we just could not afford to buy even sweets, not to say other more delicious food like biscuit or chocolate. I read something about chocolate in the story book while I was studying in primary school but just could not imagine how it looks like or tastes like. The only way I could get a chance to eat some delicious food was to visit other families in the "kampung"(village) frequently, hopefully they would share with me something nice to eat. At the end, I became the most gluttonous boy, not only in my family, but also in the "kampung".
But I think you are also gluttonous because you, like me, also never stop eating everyday. You work five days a week, but eat seven days a week. You tend to forget many thing but never forget eating. You may not be so punctual in many thing but always punctual in eating. When you want to have some reunion gathering with your friends, you always end up eating in restaurant.
Full moon, eat.
Birthday, eat.
Wedding, eat.
Aniversary, eat.
Valentine day, eat.
Gathering, eat.
Celebrations, eat.
Funeral, eat.
Eat, eat, eat..., from birth until the very last day in this world.
"民以食为天也！" (Eating is heaven)
Are you convinced now you are also gluttonous?
But Bible says, "Man shall not live by bread alone, but by every word that proceeds out of the mouth of God." Matthew 4:4
See you next post:-)
Wednesday, August 16, 2006
Day +42
I am fine today.
I came across a very interesting article called "Stem Cells: The Real Culprits of Cancer?" in Scientific American July Edition. You can click on the article title above to gain access to the article. Please let me know if you want the full edition in pdf format. I can email you one.
The article not only provides the possible ways a mutated or malignant stem cell can cause cancer as illustrated in the figure "Possible Paths to Cancer", it also gives us a very good understanding of how the stem cells works in the figure "Hierachy in Blood-forming Cells", the best illustration I ever have so far.
The figure "Cornering Cancer Stem Cells", lists down the discovery of cancer stem cells for various type of cancer chronologically. The cancer stem cell for Acute Myeloid Leukaemia(AML), discovered in 1994, is the earliest discovery of a malignant stem cell.
Further to this, the research team at University of Rochester, led by Craig T. Jordan and Monica L. Guzman discovered a compound from the Feverfew plant called Parthenolide, could cause apoptosis or programmed cell death in AML stem cells, while sparing normal blood stem cells. The research was published in Blood Journal, 1 June, 2005 Issues. You can download the full paper in pdf format here. Anyway, it's too technical for me to understand:-(
Please inform me if you know anyone who plants this Feverfew. I think it is not a bad idea to drink it like Chrysanthemum tea:-)
See you next post.
I came across a very interesting article called "Stem Cells: The Real Culprits of Cancer?" in Scientific American July Edition. You can click on the article title above to gain access to the article. Please let me know if you want the full edition in pdf format. I can email you one.
The article not only provides the possible ways a mutated or malignant stem cell can cause cancer as illustrated in the figure "Possible Paths to Cancer", it also gives us a very good understanding of how the stem cells works in the figure "Hierachy in Blood-forming Cells", the best illustration I ever have so far.
The figure "Cornering Cancer Stem Cells", lists down the discovery of cancer stem cells for various type of cancer chronologically. The cancer stem cell for Acute Myeloid Leukaemia(AML), discovered in 1994, is the earliest discovery of a malignant stem cell.
Further to this, the research team at University of Rochester, led by Craig T. Jordan and Monica L. Guzman discovered a compound from the Feverfew plant called Parthenolide, could cause apoptosis or programmed cell death in AML stem cells, while sparing normal blood stem cells. The research was published in Blood Journal, 1 June, 2005 Issues. You can download the full paper in pdf format here. Anyway, it's too technical for me to understand:-(
Please inform me if you know anyone who plants this Feverfew. I think it is not a bad idea to drink it like Chrysanthemum tea:-)
See you next post.
Tuesday, August 15, 2006
Day +41
I am well today.
I managed to clean my own room today while my wife was cleaning the toilet. She prepared the diluted Dettol solution, cleaning cloth and the mop for me first. Then I put on the mask and gloves, and used the cleaning cloth that was treated with Dettol solution to wipe off the dust on the cupboards, windows, tables, guitar case, notebook computer and almost everything I can find in the room. After this, I mopped the floor and changed the bedsheet and and pillow case to complete the cleaning job. This cleaning serves as a good exercise for me and it also reduces some burden of my wife. 一箭双雕 :-)(Kills two birds with one stone)
My friend sent me a web site on the top 100 healthy foods few days ago. I scanned through the list and found out peanut, my favourite food, is inside the list. According to the website, the peanut can prevent cancer, heart disease, high blood pressure, obesity and stroke. In addition, it is also rich in magnesium, phosphorus, potassium, copper and zinc. So I asked my wife to buy me some peanut to be taken together with meals. As rotten peanut is extremely bad for health, my mother-in-law peeled off the skin of every peanut and then divided each of them into half to check whether they are fresh. After that, she fried the peanuts without using a single drop of oil until they are crispy and fragrant.
I am so glad to be served with these fresh, crispy, fragrant and delicious peanuts today, a healthy delicious food:-)
See you next post.
I managed to clean my own room today while my wife was cleaning the toilet. She prepared the diluted Dettol solution, cleaning cloth and the mop for me first. Then I put on the mask and gloves, and used the cleaning cloth that was treated with Dettol solution to wipe off the dust on the cupboards, windows, tables, guitar case, notebook computer and almost everything I can find in the room. After this, I mopped the floor and changed the bedsheet and and pillow case to complete the cleaning job. This cleaning serves as a good exercise for me and it also reduces some burden of my wife. 一箭双雕 :-)(Kills two birds with one stone)
My friend sent me a web site on the top 100 healthy foods few days ago. I scanned through the list and found out peanut, my favourite food, is inside the list. According to the website, the peanut can prevent cancer, heart disease, high blood pressure, obesity and stroke. In addition, it is also rich in magnesium, phosphorus, potassium, copper and zinc. So I asked my wife to buy me some peanut to be taken together with meals. As rotten peanut is extremely bad for health, my mother-in-law peeled off the skin of every peanut and then divided each of them into half to check whether they are fresh. After that, she fried the peanuts without using a single drop of oil until they are crispy and fragrant.
I am so glad to be served with these fresh, crispy, fragrant and delicious peanuts today, a healthy delicious food:-)
See you next post.
Monday, August 14, 2006
Day +40
My Blood Count Today:
Red Blood Count (RBC) = 104(Normal 130-180)
Platelet = 144(Normal 150-150)
White Blood Count (WBC) = 1.8(Normal 4 - 11)
ANC = 0.468 (Normal 1.5 - 8.0)
Potassium = 3.8(Normal 3.5 - 5.2)
Magnesium = 0.47(Normal 0.65 - 1.05)
I am well today. The white blood count drops further from 2.2 to 1.8, and the potassium also drops from 4.6 to 3.8. Since the white blood count is low, the doctor decided to give me "growth factor" injection, 3 times a week stimulates the bone marrow to produce more white blood cells. The magnesium level increase a little bit, but still below the normal range. The nurse gave me magnesium infusion straight away after the blood sample was drawn, without waiting for the blood count result first. So I am able to reach home at 12:30pm, about 2 hours earlier compared to the last followups. The platelet count almost increased to the normal range.
My Absolute Neutrophil Count (ANC) is 0.468, which is extremely low. ANC is the actual number of neutrophil in the white blood cells. Neutrophil is one components of the white blood cells that helps to kill and digest microorganism. The other components are macrophage, basophil and eosinophil. We wouldn't know if a person is proned to infection just by looking at the white blood count alone. We have to caluclate the ANC of a person to determine the risk of infection.
ANC is calculated by multiplying the white blood count with the percentage of neutrophils in the white blood cells. Based on the blood report, my neutrophil percentage is 26%, therefore my ANC is equal to 1.8x1000x26% = 1800x0.26 = 468. We then convert it to normal covention by dividing the value with 1000 = 0.468.
The risk of infection based on ANC is as follow:
Neutropenia = ANC < 2.0 (slight risk of infection)
Mild Neutropenia = 1.0 < ANC < 1.5 (minimal risk of infection)
Moderate Neutropenia = 0.5 < ANC < 1.0 (moderate risk of infection)
Severe Neutropenia = ANC < 0.5 (high risk of infection)
If you still have your last blood test result, try to calculate what ANC you have and I am very sure that it is way above 2.0:-)
See you next post.
Red Blood Count (RBC) = 104(Normal 130-180)
Platelet = 144(Normal 150-150)
White Blood Count (WBC) = 1.8(Normal 4 - 11)
ANC = 0.468 (Normal 1.5 - 8.0)
Potassium = 3.8(Normal 3.5 - 5.2)
Magnesium = 0.47(Normal 0.65 - 1.05)
I am well today. The white blood count drops further from 2.2 to 1.8, and the potassium also drops from 4.6 to 3.8. Since the white blood count is low, the doctor decided to give me "growth factor" injection, 3 times a week stimulates the bone marrow to produce more white blood cells. The magnesium level increase a little bit, but still below the normal range. The nurse gave me magnesium infusion straight away after the blood sample was drawn, without waiting for the blood count result first. So I am able to reach home at 12:30pm, about 2 hours earlier compared to the last followups. The platelet count almost increased to the normal range.
My Absolute Neutrophil Count (ANC) is 0.468, which is extremely low. ANC is the actual number of neutrophil in the white blood cells. Neutrophil is one components of the white blood cells that helps to kill and digest microorganism. The other components are macrophage, basophil and eosinophil. We wouldn't know if a person is proned to infection just by looking at the white blood count alone. We have to caluclate the ANC of a person to determine the risk of infection.
ANC is calculated by multiplying the white blood count with the percentage of neutrophils in the white blood cells. Based on the blood report, my neutrophil percentage is 26%, therefore my ANC is equal to 1.8x1000x26% = 1800x0.26 = 468. We then convert it to normal covention by dividing the value with 1000 = 0.468.
The risk of infection based on ANC is as follow:
Neutropenia = ANC < 2.0 (slight risk of infection)
Mild Neutropenia = 1.0 < ANC < 1.5 (minimal risk of infection)
Moderate Neutropenia = 0.5 < ANC < 1.0 (moderate risk of infection)
Severe Neutropenia = ANC < 0.5 (high risk of infection)
If you still have your last blood test result, try to calculate what ANC you have and I am very sure that it is way above 2.0:-)
See you next post.
Sunday, August 13, 2006
Day +39
I am well today, in this isolated room full of Dettol smell.
My hardworking and careful wife just wiped everything in the room with a cloth treated with Dettol solution. I have to turn on the HEPAire filter to full speed in order to get rid of the smell as soon as possible. The ionizer on the filter is also turned on to "charge the air with negative ions to make me feel alive, energetic, and exhilarated, just like I am in the mountain or near a water fall after the thunderstorm." This is what the HEPAire filter salesman said, but I really don't feel I am anywhere near the mountain or the waterfall:-(
See you next post:-)
My hardworking and careful wife just wiped everything in the room with a cloth treated with Dettol solution. I have to turn on the HEPAire filter to full speed in order to get rid of the smell as soon as possible. The ionizer on the filter is also turned on to "charge the air with negative ions to make me feel alive, energetic, and exhilarated, just like I am in the mountain or near a water fall after the thunderstorm." This is what the HEPAire filter salesman said, but I really don't feel I am anywhere near the mountain or the waterfall:-(
See you next post:-)
Saturday, August 12, 2006
Day +38
I am well today. The PICC lines behave very well, no backflow occurs.
Today my daughter, Adriel, celebrated her 2 years old birthday together with my 4th sister. Actually Adriel birthday is on the 11 August, which is yesterday. We organized a combined birthday party for them. Economic of scale :-) It is a pitty that our digital camera run out of battery, so no photograph could be taken and we lent our video camera to someone, so no video could be taken either:-( I didn't join the party but based on the loud and noisy noice downstair, I knew both the children and adults were having fun. My sister, one of our church members and my wife prepared many delicious foods for the party. These foods include spaghetti, KFC, potatoes wedges, Pizza, mushroom soup, salad, birthday cake, soft drink mixed with lemon juice and Nata De Cocoa, Konnyaku jelly and others.
Even though I didn't join the party, but I was served with home cooked spaghetti, the most delicious food I ever have after the transplant:-)
See you next post.
Today my daughter, Adriel, celebrated her 2 years old birthday together with my 4th sister. Actually Adriel birthday is on the 11 August, which is yesterday. We organized a combined birthday party for them. Economic of scale :-) It is a pitty that our digital camera run out of battery, so no photograph could be taken and we lent our video camera to someone, so no video could be taken either:-( I didn't join the party but based on the loud and noisy noice downstair, I knew both the children and adults were having fun. My sister, one of our church members and my wife prepared many delicious foods for the party. These foods include spaghetti, KFC, potatoes wedges, Pizza, mushroom soup, salad, birthday cake, soft drink mixed with lemon juice and Nata De Cocoa, Konnyaku jelly and others.
Even though I didn't join the party, but I was served with home cooked spaghetti, the most delicious food I ever have after the transplant:-)
See you next post.
Friday, August 11, 2006
Day +37
I am well today. One of the PICC lines experienced backflow, my wife helped me to flush the line. She did it very well. Applause!
I was admitted to the hospital for transplant when Aaron, my youngest son is slightly more than two months old. Before the admission, he always smiled at me when I called his name and now he still smiles a lot when someone he recognized called him. This morning I called him and thought that he will responds with smile like before, but only to find out that he kept on staring at me, with his mouth wide open, without any smile. I think he might wondering who this bald head guy is:-(
When I just came back from the hospital, my 2 years old daughter always knocked at the door and shouted, "I want Baba, I want Baba!" My wife explained, "Baba is not healthy, you cannot go near to him." She now know that she should kept a distance from me. We bought her a teddy bear as her 2 years old birthday present yesterday, she was very happy. When my wife passed me something through the door, I saw her holding the teddy bear and saying to me repeatly, "Adriel like(s) birthday present."
My second son, Joseph always knocked at the door and wanted to talk to me. When I opened the door, the first thing he would said is, "Wow! It's so cold!" He must be admiring his father for enjoying his life in this cold room.
Daniel, my eldest son, always knocked at the door and told me how many reward points he earned so far. Seeing me enjoying life in this cold room, he told my wife he would like to have a private room as well.
My wife, Angela, is busy taking care of me and the children. Washing the toilet, cleaning the room...
See you next post:-)
I was admitted to the hospital for transplant when Aaron, my youngest son is slightly more than two months old. Before the admission, he always smiled at me when I called his name and now he still smiles a lot when someone he recognized called him. This morning I called him and thought that he will responds with smile like before, but only to find out that he kept on staring at me, with his mouth wide open, without any smile. I think he might wondering who this bald head guy is:-(
When I just came back from the hospital, my 2 years old daughter always knocked at the door and shouted, "I want Baba, I want Baba!" My wife explained, "Baba is not healthy, you cannot go near to him." She now know that she should kept a distance from me. We bought her a teddy bear as her 2 years old birthday present yesterday, she was very happy. When my wife passed me something through the door, I saw her holding the teddy bear and saying to me repeatly, "Adriel like(s) birthday present."
My second son, Joseph always knocked at the door and wanted to talk to me. When I opened the door, the first thing he would said is, "Wow! It's so cold!" He must be admiring his father for enjoying his life in this cold room.
Daniel, my eldest son, always knocked at the door and told me how many reward points he earned so far. Seeing me enjoying life in this cold room, he told my wife he would like to have a private room as well.
My wife, Angela, is busy taking care of me and the children. Washing the toilet, cleaning the room...
See you next post:-)
Thursday, August 10, 2006
Day +36
My Blood Count Today:
Red Blood Count (RBC) = 103(Normal 130-180)
Platelet = 113(Normal 150-150)
White Blood Count (WBC) = 2.2(Normal 4 - 11)
Potassium = 4.5(Normal 3.5 - 5.2)
Magnesium = 0.44(Normal 0.65 - 1.05)
I am fine today. I went for 2nd followup this morning. Most of the blood counts do not vary much. There is a good increase of platelet, from 100 to 113, but the white blood count drops further from 2.4 to 2.2. The nurse gave me another infusion of magnesium today.
Since the potassium level is maintained quite well, the nurse advised me to continue what I have been eating. I am now basically a vegetarian who also eat fish. In the morning, I have oat meal mixed with fish and many type of vegetables. In the afternoon and evening, brown rice or 5 grains, fish ball soup or bean curd soup with vegetable in it, mixed vegetables and steam fish. Forgetting about the fish, I am more vegetarian than any other vegetarian because I am served with at least five type of vegetables each meal. These vegetables include celery, spinarch, brocolli, cauliflower, green pepper, red pepper, yellow pepper, lady finger, french bean, corn shoot, chinese cabbage, tomato, loofah, sweet mustard, swiss chard and many others which I don't know how to call them, but definately know how to eat them.
These meals are really difficult to eat and therefore it must be healthy. Another "secret recipe" to boost our immune system as advocated by those Natural Therapist is to swallow a spoonful of food after 30 chews. The reason to have so many chews is the same as to divide a cup of water into 100 sips, that is to swallow as much saliva as we can. Since the brown rice and the 5 grains are so hard and rough, and the vegetables are not delicious too, therefore no matter how big my throat is, I still have to chew a spoonful of them at least 30 times before I manage to swallow them - thefore the foods become healthy:-). I normally swallow a mouthful of those delicious foods like KFC, Big Mac or Pizza... with less than 5 chews - therefore these foods are not healthy. This might answer the question from my son, "Why all delicious foods are unhealthy and all healthy foods are not delicious?" But if I explain to him this way, he will be very happy and tell me, "Baba, now I can have Pizza everyday because I will chew each mouthful of Pizza 30 times before I swallow it." :-)
See you next post.
Red Blood Count (RBC) = 103(Normal 130-180)
Platelet = 113(Normal 150-150)
White Blood Count (WBC) = 2.2(Normal 4 - 11)
Potassium = 4.5(Normal 3.5 - 5.2)
Magnesium = 0.44(Normal 0.65 - 1.05)
I am fine today. I went for 2nd followup this morning. Most of the blood counts do not vary much. There is a good increase of platelet, from 100 to 113, but the white blood count drops further from 2.4 to 2.2. The nurse gave me another infusion of magnesium today.
Since the potassium level is maintained quite well, the nurse advised me to continue what I have been eating. I am now basically a vegetarian who also eat fish. In the morning, I have oat meal mixed with fish and many type of vegetables. In the afternoon and evening, brown rice or 5 grains, fish ball soup or bean curd soup with vegetable in it, mixed vegetables and steam fish. Forgetting about the fish, I am more vegetarian than any other vegetarian because I am served with at least five type of vegetables each meal. These vegetables include celery, spinarch, brocolli, cauliflower, green pepper, red pepper, yellow pepper, lady finger, french bean, corn shoot, chinese cabbage, tomato, loofah, sweet mustard, swiss chard and many others which I don't know how to call them, but definately know how to eat them.
These meals are really difficult to eat and therefore it must be healthy. Another "secret recipe" to boost our immune system as advocated by those Natural Therapist is to swallow a spoonful of food after 30 chews. The reason to have so many chews is the same as to divide a cup of water into 100 sips, that is to swallow as much saliva as we can. Since the brown rice and the 5 grains are so hard and rough, and the vegetables are not delicious too, therefore no matter how big my throat is, I still have to chew a spoonful of them at least 30 times before I manage to swallow them - thefore the foods become healthy:-). I normally swallow a mouthful of those delicious foods like KFC, Big Mac or Pizza... with less than 5 chews - therefore these foods are not healthy. This might answer the question from my son, "Why all delicious foods are unhealthy and all healthy foods are not delicious?" But if I explain to him this way, he will be very happy and tell me, "Baba, now I can have Pizza everyday because I will chew each mouthful of Pizza 30 times before I swallow it." :-)
See you next post.
Wednesday, August 09, 2006
Day +35
I am fine today and this is the 2nd day I do not need to go to hospital. The PICC lines behave very well, no backflow occurs.
My friend, Eric Cheong, whom I met in hospital passed away yesterday evening in the hospital, after 8 months of battle against the Leukaemia disease. Before he passed away, he dreamed heaven, a wonderful place with wonderful people and now heaven is his home.
See you next post.
My friend, Eric Cheong, whom I met in hospital passed away yesterday evening in the hospital, after 8 months of battle against the Leukaemia disease. Before he passed away, he dreamed heaven, a wonderful place with wonderful people and now heaven is his home.
See you next post.
Tuesday, August 08, 2006
Day +34
This morning, I went to the hospital again to flush one of the PICC lines which experiences backflow again. The valve in the PICC line which should prevent backflow might not be working properly now.
Since the backflow happens almost everyday, the BMT nurse demonstrated to my wife the procedure to flush a PICC line. The nurse supplied normal saline solution and other apparatus needed to flush the line. The first step is to wash the hands, then opens the 10cc normal saline container, tears open the single use alcohol pad and syringe package, opens the gauze that wraps the PICC connector, then washes the hands again, extracts the normal saline into the syringe, cleans the PICC connector head with alcohol pad, connects the syringe to the connector, opens the clamp on the PICC line, try to draw blood first then pushes the normal saline into the PICC line, disconnect the syringe from the connector, clean the connector head with alcohol pad gain.
So now my wife becomes my private nurse at home, specializing in PICC line flushing only. She will be even more careful than the BMT nurse, because she will not only wash her hands but also take bath first before flushing the PICC line for me:-)
See you next post:-)
Since the backflow happens almost everyday, the BMT nurse demonstrated to my wife the procedure to flush a PICC line. The nurse supplied normal saline solution and other apparatus needed to flush the line. The first step is to wash the hands, then opens the 10cc normal saline container, tears open the single use alcohol pad and syringe package, opens the gauze that wraps the PICC connector, then washes the hands again, extracts the normal saline into the syringe, cleans the PICC connector head with alcohol pad, connects the syringe to the connector, opens the clamp on the PICC line, try to draw blood first then pushes the normal saline into the PICC line, disconnect the syringe from the connector, clean the connector head with alcohol pad gain.
So now my wife becomes my private nurse at home, specializing in PICC line flushing only. She will be even more careful than the BMT nurse, because she will not only wash her hands but also take bath first before flushing the PICC line for me:-)
See you next post:-)
Monday, August 07, 2006
Day +33
My Blood Count Today:
Red Blood Count (RBC) = 103(Normal 130-180)
Platelet = 100(Normal 150-150)
White Blood Count (WBC) = 2.4(Normal 4 - 11)
Potassium = 4.6(Normal 3.5 - 5.2)
Magnesium = 0.45(Normal 0.65 - 1.05)
This is my blood count for the first followup . There is a very good increase in platelet. The red blood count also increases from 94 to 103. The white blood count drops from 19.2 to 2.4. We still don't know it is still dropping or start to pick up. This will be confirmed on the second followup on Monday. The level of potassium is very good now. However, the body still experiences magnesium deficiency. I was given magnesium infusion, a process which lasted for 2 hours. My wife and I started our journey to hospital at 7:00am and only reached home at 3:00pm. We can reach home at lot earlier if I do not need magnesium infusion anymore.
I also experienced mild fluid retention on my feet. One way to determine whether fuild retention happens is to press the swelling part on the body and then release it. If the body surface does not bounce back immediately and is dented for a while , then fluid retention occurs. I told doctors I drink at least 5 litres of water everyday and they are quite surprised with this big amount of water intake. They advised me not to force myself to drink. In fact I never force myself. Everyday, I need 1.5 litres of water to swallow the pills. Apart from this, I drink about 1.0 litre of soup together with meal, 0.5 litre nutritious Ensure milk and 0.5 litre Ovaltine. Sometime I drink 0.5 litre green bean or read bean soup. This will sum up to a total of 4 litres of water already.
I told doctor I am taking fish ball soup most of the time and she asked me : "Why fish ball soup?" I could not answer her because I also don't know the answer. I think I need to ask my wife this question and hopefully she knows the answer. "Why not shark fin soup or curry chicken soup or prawn Tomyam soup or beef tandon soup...?" Thinking about these soup make me very hungry now.
I cannot write anymore because I need to find some food to eat. See you next post:-)
Red Blood Count (RBC) = 103(Normal 130-180)
Platelet = 100(Normal 150-150)
White Blood Count (WBC) = 2.4(Normal 4 - 11)
Potassium = 4.6(Normal 3.5 - 5.2)
Magnesium = 0.45(Normal 0.65 - 1.05)
This is my blood count for the first followup . There is a very good increase in platelet. The red blood count also increases from 94 to 103. The white blood count drops from 19.2 to 2.4. We still don't know it is still dropping or start to pick up. This will be confirmed on the second followup on Monday. The level of potassium is very good now. However, the body still experiences magnesium deficiency. I was given magnesium infusion, a process which lasted for 2 hours. My wife and I started our journey to hospital at 7:00am and only reached home at 3:00pm. We can reach home at lot earlier if I do not need magnesium infusion anymore.
I also experienced mild fluid retention on my feet. One way to determine whether fuild retention happens is to press the swelling part on the body and then release it. If the body surface does not bounce back immediately and is dented for a while , then fluid retention occurs. I told doctors I drink at least 5 litres of water everyday and they are quite surprised with this big amount of water intake. They advised me not to force myself to drink. In fact I never force myself. Everyday, I need 1.5 litres of water to swallow the pills. Apart from this, I drink about 1.0 litre of soup together with meal, 0.5 litre nutritious Ensure milk and 0.5 litre Ovaltine. Sometime I drink 0.5 litre green bean or read bean soup. This will sum up to a total of 4 litres of water already.
I told doctor I am taking fish ball soup most of the time and she asked me : "Why fish ball soup?" I could not answer her because I also don't know the answer. I think I need to ask my wife this question and hopefully she knows the answer. "Why not shark fin soup or curry chicken soup or prawn Tomyam soup or beef tandon soup...?" Thinking about these soup make me very hungry now.
I cannot write anymore because I need to find some food to eat. See you next post:-)
Sunday, August 06, 2006
Day +32
I am fine today. One of the PICC (Peripherally Inserted Central Catherter) lines on my right arm experienced heavy backflow. My wife sent me to hospital to request the BMT nurse to flush the line in the afternoon. The nurse also did the PICC dressing for me. Then she clamped both catherter lines to prevent backflow.
I also brought back the two sport cars that I left in the ward and returned them to my children. The room which I stay now is too small for me to play them. There is also no more bicycle for me to exercise. How I wish I could go for jogging every early morning, just like what I consistently doing before I was sick for two years. I completed a distance of about 3.7km within 20 to 25 minutes at 5:30am everyday and this 3.7km is actually makes up of 5 rounds, with a distance of about 0.7km each round. Assuming that I managed to jog for 330 days a year, the total distance that I completed in two years is equal to 2442km (330x2x3.7km).
In order to have good exercise, I try to jog in my room. But because the total distance of a round in my room is only about 5 meters, completing a distance of 3.7km would requires 740 (3700/5)rounds. Since the distance of 5 meters per round is really too small for me, after a few round of jogging in the room, "peninglah kepala saya"(Dizzy is my head) :-(
See you next post:-)
I also brought back the two sport cars that I left in the ward and returned them to my children. The room which I stay now is too small for me to play them. There is also no more bicycle for me to exercise. How I wish I could go for jogging every early morning, just like what I consistently doing before I was sick for two years. I completed a distance of about 3.7km within 20 to 25 minutes at 5:30am everyday and this 3.7km is actually makes up of 5 rounds, with a distance of about 0.7km each round. Assuming that I managed to jog for 330 days a year, the total distance that I completed in two years is equal to 2442km (330x2x3.7km).
In order to have good exercise, I try to jog in my room. But because the total distance of a round in my room is only about 5 meters, completing a distance of 3.7km would requires 740 (3700/5)rounds. Since the distance of 5 meters per round is really too small for me, after a few round of jogging in the room, "peninglah kepala saya"(Dizzy is my head) :-(
See you next post:-)
Saturday, August 05, 2006
Day +31
I am fine today and this is the first day I do not need to go to hospital.
While I was staying in the isolated ward doing the transplant, the BMT(bone marrow transplant) nurse introduced me a girl called Sandra. She had the same disease as me and also did her transplant at the same ward some years back, with the same team of haematologists(doctor who specializes in blood diseases) and BMT nurses. Before I met her, the nurses metioned her name a few times and praised her a "brave and strong" girl. Not long after the transplant, she further her dream in persuing her study in UK. We did have a short chat over the glass and she gave me some good advices.
She commented on my yesterday post about my self-imposed isolation at home. It seems to her that I isolated myself too much and she never "ill-treated" herself so severly while she was discharged after the transplant last time:-)
But I think the only way for me to conform to the guideline "avoid crowd and limit healthy visitors to a group of 2 to 4" is to temporarily isolate myself.
You see, I have one wife(I swear, only one:-)) and four children. The number of this immediate family member is qualified as a crowd already because they are more than 4. Apart from this, there are other residents in the house which include my mother-in-law, a maid and a nephew. On the weekend, another nephew will come to stay with us. This makes the total number of resident in my house equal to 8, which is quite a big crowd. Therefore I have to avoid this crowd by isolating myself.
Furthermore, the residents in my house are generous and united. If one of them is infected with flu, he or she will shares the flu generously with other residents in the house, one by one like a relay match. So the flu season will last quite a long time. Since they are now in this flu season, I have to isolate myself.
If I go out of my room now, my 2 years old daughter with running nose, will chase after me requesting me to hold her. And yet I am not allowed to run very fast now because my platelet is not fully recovered. So it is very likely that she will catches me after a few rounds of chasing. In order to void myself being catched by her, I have no choice but to isolate myself :-(
See you next post:-)
While I was staying in the isolated ward doing the transplant, the BMT(bone marrow transplant) nurse introduced me a girl called Sandra. She had the same disease as me and also did her transplant at the same ward some years back, with the same team of haematologists(doctor who specializes in blood diseases) and BMT nurses. Before I met her, the nurses metioned her name a few times and praised her a "brave and strong" girl. Not long after the transplant, she further her dream in persuing her study in UK. We did have a short chat over the glass and she gave me some good advices.
She commented on my yesterday post about my self-imposed isolation at home. It seems to her that I isolated myself too much and she never "ill-treated" herself so severly while she was discharged after the transplant last time:-)
But I think the only way for me to conform to the guideline "avoid crowd and limit healthy visitors to a group of 2 to 4" is to temporarily isolate myself.
You see, I have one wife(I swear, only one:-)) and four children. The number of this immediate family member is qualified as a crowd already because they are more than 4. Apart from this, there are other residents in the house which include my mother-in-law, a maid and a nephew. On the weekend, another nephew will come to stay with us. This makes the total number of resident in my house equal to 8, which is quite a big crowd. Therefore I have to avoid this crowd by isolating myself.
Furthermore, the residents in my house are generous and united. If one of them is infected with flu, he or she will shares the flu generously with other residents in the house, one by one like a relay match. So the flu season will last quite a long time. Since they are now in this flu season, I have to isolate myself.
If I go out of my room now, my 2 years old daughter with running nose, will chase after me requesting me to hold her. And yet I am not allowed to run very fast now because my platelet is not fully recovered. So it is very likely that she will catches me after a few rounds of chasing. In order to void myself being catched by her, I have no choice but to isolate myself :-(
See you next post:-)
Friday, August 04, 2006
Day +30
This morning I went to hospital to allow the nurse to draw my blood sample for VNTR and some other research. VNTR stands for Variable Number Tandem Repeats, it is used as DNA fringerprinting to uniquely indentify a person. Thefore, it can serves as a mean to determine if the stem cells from the donor is successfully engrafted.
I am now staying in an isolated room at home, a room smaller than the ward. My eldest sister who took half-paid leave to come here to take care of me is a very careful person. She cleaned every part of the room except the ceiling with antiseptic-germicide Dettol. When I came home from the hospital yesterday, she cleaned everything that we brought back from the hospital with Dettol. This includes the notebook computer, electric cables, guitar, electric kettle and even my cheque book. So when I received the cheque book from her, it is wet:-(
The toilet attached to the room which supposed to be shared with another room where my nephew stay is now monopolized by me. Pitty my nephew who needs to rush to the toilet upstair at midnight :-(
The setting in the room is very similar to the ward. It is equipped with air conditioner and air filter to reduce dust. I wear the same cloth that I wear in the ward - I do not wear hospital cloth in the ward. I also boil the water in the room using the filtered water that my wife passes to me. No one is allowed to enter the room unless the one who help to clean the room. My wife will pass me the meal, cloth and other stuffs through a partially opened door.
And now instead of talking through the glass, we have to talk through the wall:-)
See you next post:-)
I am now staying in an isolated room at home, a room smaller than the ward. My eldest sister who took half-paid leave to come here to take care of me is a very careful person. She cleaned every part of the room except the ceiling with antiseptic-germicide Dettol. When I came home from the hospital yesterday, she cleaned everything that we brought back from the hospital with Dettol. This includes the notebook computer, electric cables, guitar, electric kettle and even my cheque book. So when I received the cheque book from her, it is wet:-(
The toilet attached to the room which supposed to be shared with another room where my nephew stay is now monopolized by me. Pitty my nephew who needs to rush to the toilet upstair at midnight :-(
The setting in the room is very similar to the ward. It is equipped with air conditioner and air filter to reduce dust. I wear the same cloth that I wear in the ward - I do not wear hospital cloth in the ward. I also boil the water in the room using the filtered water that my wife passes to me. No one is allowed to enter the room unless the one who help to clean the room. My wife will pass me the meal, cloth and other stuffs through a partially opened door.
And now instead of talking through the glass, we have to talk through the wall:-)
See you next post:-)
Thursday, August 03, 2006
Day +29
My Blood Count Today:
Red Blood Count (RBC) = 94(Normal 130-180)
Platelet = 63(Normal 150-50)
White Blood Count (WBC) = 19.2(Normal 4 - 11)
Potassium = 4.1(Normal 3.5 - 5.2)
Magnesium = 0.53(Normal 0.65 - 1.05)
I am well today, with magnesium deficiency. The red blood count drops a little bit, but there is a good increase in platelet. The white blood count shoots up like rocket, from 1.5 to 19.2. It should be due to the "growth factor" injection yesterday and it will drops again.
The doctors decided to discharge me today - a milestone:-). The total number of days I stayed in the ward for the transplant is 39(29+9+1). I sincerely appreciate the doctors and nurses who take great care of me throughout my stay in the ward. After this, I still have to go through intensive follwup initially, twice a week on Monday and Thursday.
The immune system will take about 6 months to 1 year to mature. So I will isolate myself again in a small room at home, with air conditioner and air filter(HEPA filter + Carbon filter + Ionizer). I am not allowed to touch my baby because he is vaccinated with the live-virus oral polio vaccine. The virus in his body can infect me easily through his body secretions like sweat and stool.
The guideline for visitor is "Avoid close physical contact with anyone who has cough, cold or other infections. You can have visitors, but limit them to small groups(2 to 4 at a time) of healthy people". So if you intended to visit me, I hope you can hold on the visit until my immune system becomes more mature. However, if you are healthy and from far away such as Sarawak, US, Hong Kong, then I will accept the visit, limited to 2 to 4 person at a time.
Glory and praise to our God!
See you next post.
Red Blood Count (RBC) = 94(Normal 130-180)
Platelet = 63(Normal 150-50)
White Blood Count (WBC) = 19.2(Normal 4 - 11)
Potassium = 4.1(Normal 3.5 - 5.2)
Magnesium = 0.53(Normal 0.65 - 1.05)
I am well today, with magnesium deficiency. The red blood count drops a little bit, but there is a good increase in platelet. The white blood count shoots up like rocket, from 1.5 to 19.2. It should be due to the "growth factor" injection yesterday and it will drops again.
The doctors decided to discharge me today - a milestone:-). The total number of days I stayed in the ward for the transplant is 39(29+9+1). I sincerely appreciate the doctors and nurses who take great care of me throughout my stay in the ward. After this, I still have to go through intensive follwup initially, twice a week on Monday and Thursday.
The immune system will take about 6 months to 1 year to mature. So I will isolate myself again in a small room at home, with air conditioner and air filter(HEPA filter + Carbon filter + Ionizer). I am not allowed to touch my baby because he is vaccinated with the live-virus oral polio vaccine. The virus in his body can infect me easily through his body secretions like sweat and stool.
The guideline for visitor is "Avoid close physical contact with anyone who has cough, cold or other infections. You can have visitors, but limit them to small groups(2 to 4 at a time) of healthy people". So if you intended to visit me, I hope you can hold on the visit until my immune system becomes more mature. However, if you are healthy and from far away such as Sarawak, US, Hong Kong, then I will accept the visit, limited to 2 to 4 person at a time.
Glory and praise to our God!
See you next post.
Wednesday, August 02, 2006
Day +28
My Blood Count Today:
Red Blood Count (RBC) = 98(Normal 130-180)
Platelet = 54(Normal 150-50)
White Blood Count (WBC) = 1.5(Normal 4 - 11)
Potassium = 4.1Normal 3.5 - 5.2)
Magnesium = 0.49(Normal 0.65 - 1.05)
I am fine today. All the blood counts drop a little bit. The drop of white blood count is beyond my expection. However, doctors say it is not considered to be a problem as the BMA result showed very good engraftment.
In order to raise the white blood count, doctors decided to give me "growth factor" again through injection, three times a week.
As I said in the previous post, I am very busy in this isolated ward. So you don't have to worry I would be upset due to the delay in discharge.
The list of thing that I do or could do in the ward:
1. Sleeping - never feel guilty of sleep too much because it is my job to sleep now.
2. Eating - meals, pills, supplements... to make sure that I get enough nutritient.
3. Take bath - I put it here because it takes me half an hour to take a bath now. Before I was sick, it only takes about of 5 minutes - a piece of soap apply to the whole body without applying any hair shampoo or lotion. Now I have to apply lotion to every part of the body including my shinning bald head after taking bath. If I look at the mirror, I can see my head reflecting light:-)
4. Exercise - This include cycling, playing the sport cars and walk in the room.
5. Reading - newspaper, bible-sometime memorize verses, plenty of electronic books(Jinyong novels, years of Scientic American magazine, over 100 music books, christian material, internet resources...), many hard copy books at home as well.
6. Listen to sermon - there are plenty of them online.
7. Writing blog - may be can venture into other writing:-)
8. Music appreciation - over 500 hundred audio CD, VCD and DVD. Mainly classical guitar musics, but also significant collection of classical piano, orchestra and other music. It takes about 160GB hard disk to store the collection.
9. Playing classical guitar - over 15000 pages of classical music scores both in electronic and hard copy form, if 20% of them are within my capability to play, then I will have 3000 pages of music to play and memorize. I also collect a significant amount of piano scores collection because my wife can play piano very well. Even though I cannot play piano, I feel very satisfied just by looking at the piano scores - kind of addicted to music scores due to some reasons that I would share with you later.
10. Create a software catalog of my music and score collection, so that it is easier for me to share the collection with others.
11. Playing games including my favorite Sudoku - plenty of other games in my PDA
12. Learning computer programming - always my interest
Plus many other thing to do under a physically isolated environment.
See you next post:-)
Red Blood Count (RBC) = 98(Normal 130-180)
Platelet = 54(Normal 150-50)
White Blood Count (WBC) = 1.5(Normal 4 - 11)
Potassium = 4.1Normal 3.5 - 5.2)
Magnesium = 0.49(Normal 0.65 - 1.05)
I am fine today. All the blood counts drop a little bit. The drop of white blood count is beyond my expection. However, doctors say it is not considered to be a problem as the BMA result showed very good engraftment.
In order to raise the white blood count, doctors decided to give me "growth factor" again through injection, three times a week.
As I said in the previous post, I am very busy in this isolated ward. So you don't have to worry I would be upset due to the delay in discharge.
The list of thing that I do or could do in the ward:
1. Sleeping - never feel guilty of sleep too much because it is my job to sleep now.
2. Eating - meals, pills, supplements... to make sure that I get enough nutritient.
3. Take bath - I put it here because it takes me half an hour to take a bath now. Before I was sick, it only takes about of 5 minutes - a piece of soap apply to the whole body without applying any hair shampoo or lotion. Now I have to apply lotion to every part of the body including my shinning bald head after taking bath. If I look at the mirror, I can see my head reflecting light:-)
4. Exercise - This include cycling, playing the sport cars and walk in the room.
5. Reading - newspaper, bible-sometime memorize verses, plenty of electronic books(Jinyong novels, years of Scientic American magazine, over 100 music books, christian material, internet resources...), many hard copy books at home as well.
6. Listen to sermon - there are plenty of them online.
7. Writing blog - may be can venture into other writing:-)
8. Music appreciation - over 500 hundred audio CD, VCD and DVD. Mainly classical guitar musics, but also significant collection of classical piano, orchestra and other music. It takes about 160GB hard disk to store the collection.
9. Playing classical guitar - over 15000 pages of classical music scores both in electronic and hard copy form, if 20% of them are within my capability to play, then I will have 3000 pages of music to play and memorize. I also collect a significant amount of piano scores collection because my wife can play piano very well. Even though I cannot play piano, I feel very satisfied just by looking at the piano scores - kind of addicted to music scores due to some reasons that I would share with you later.
10. Create a software catalog of my music and score collection, so that it is easier for me to share the collection with others.
11. Playing games including my favorite Sudoku - plenty of other games in my PDA
12. Learning computer programming - always my interest
Plus many other thing to do under a physically isolated environment.
See you next post:-)
Tuesday, August 01, 2006
Day +27
My Blood Count Today:
Red Blood Count (RBC) = 99(Normal 130-180)
Platelet = 57(Normal 150-50)
White Blood Count (WBC) = 1.8(Normal 4 - 11)
Potassium = 3.8(Normal 3.5 - 5.2)
Magnesium = 0.52(Normal 0.65 - 1.05)
I am well today, but again with magnesium deficiency. Both the red blood and platelet count increase quite significantly. The white blood count is no longer dropping and I believe it will start to pick up tomorrow.
I am actually dischargeable today but because my wife and daughter are having flu, I have to stay in the wad and wait. So "the space shuttle has to remain in orbit due to bad wheather".
I have been staying in this isolated VIP room for 37 (27+9+1) days. Today is day 27 after the infusion of my sister stem cell and I was admitted 9 days before the infusion, thefore we get this formula (27+9+1 = 37), where +1 represents day 0.
You might thought that staying in a isolated wad for such a long time is very boring, but frankly speaking life here is not too boring because I have a lot of thing to do everyday. One of the things that makes me so busy is "swallowing pills". I have to swallow so many pills everyday. The pills are in tablet and capsule form, with different sizes, shapes, colours and smells.
Most of the pills are round or oval in shape which are without corner. So they are easy to be swallowed - no sharp corner that will hurts the throat. Some small pills do have shape with corner such as octagon(8 sided), but because they are small, they can be swallowed too. We should never get large pills which are not round or oval in shape.
Apart from the shape, it is interesting to observe that the pills are of variety of colours- green, pink, chocolate, blue, white... Putting all the pills with different shapes and colours together will definately increase the appetite of the patient. You just imagine you are served with a dish of delicious and colourful mixed vegetable. So the patient will swallows the pills in no time:-)
Next is the smell. The multivitamin and mineral supplement called Supradyn is chocolate in colour and it smells exactly like chocolate. Since I have not eaten chocolate for a very long time, I wish I could just chew it like chocolate before swallowing it. Unfortunately I am instructed to swallow the pill in whole. So there is no way for me to enjoy eating it like chocolate:-( I think the reason of swallowing in whole is to allow the supplement to be released gradually in the stomarch to make it more effective. If we chew it into pieces then the supplement will be released all at once which is not so effective. We also refer this gradual release mechanism as "buffered". One example is "buffered vitamin C".
The Cyclosporin pill which is taken to prevent GVHD has a very interesting smell. It smells like "Petai"(Stink Bean) and coincidently it is also coloured like "Petai" which is green. We normally cook the "Petai" with "Sambal Udang"(Prawn chili paste) to make a dish called "Sambal Udang Petai"( Stink Bean with Prawn Chili Paste). It is a very delicious Malaysian food.
Everytime when I just about to eat the Cyclosporin pill, how I wish someone could bring some "Sambal Udang" to me so that I can add the Cyclosporin into it to make a dish called "Sambal Udang Cyclosporin"(Cyclosporin with Prawn Chili Paste) for me to enjoy in the wad:-) If you have no idea of how the dish would look like, see the picture below.
Red Blood Count (RBC) = 99(Normal 130-180)
Platelet = 57(Normal 150-50)
White Blood Count (WBC) = 1.8(Normal 4 - 11)
Potassium = 3.8(Normal 3.5 - 5.2)
Magnesium = 0.52(Normal 0.65 - 1.05)
I am well today, but again with magnesium deficiency. Both the red blood and platelet count increase quite significantly. The white blood count is no longer dropping and I believe it will start to pick up tomorrow.
I am actually dischargeable today but because my wife and daughter are having flu, I have to stay in the wad and wait. So "the space shuttle has to remain in orbit due to bad wheather".
I have been staying in this isolated VIP room for 37 (27+9+1) days. Today is day 27 after the infusion of my sister stem cell and I was admitted 9 days before the infusion, thefore we get this formula (27+9+1 = 37), where +1 represents day 0.
You might thought that staying in a isolated wad for such a long time is very boring, but frankly speaking life here is not too boring because I have a lot of thing to do everyday. One of the things that makes me so busy is "swallowing pills". I have to swallow so many pills everyday. The pills are in tablet and capsule form, with different sizes, shapes, colours and smells.
Most of the pills are round or oval in shape which are without corner. So they are easy to be swallowed - no sharp corner that will hurts the throat. Some small pills do have shape with corner such as octagon(8 sided), but because they are small, they can be swallowed too. We should never get large pills which are not round or oval in shape.
Apart from the shape, it is interesting to observe that the pills are of variety of colours- green, pink, chocolate, blue, white... Putting all the pills with different shapes and colours together will definately increase the appetite of the patient. You just imagine you are served with a dish of delicious and colourful mixed vegetable. So the patient will swallows the pills in no time:-)
Next is the smell. The multivitamin and mineral supplement called Supradyn is chocolate in colour and it smells exactly like chocolate. Since I have not eaten chocolate for a very long time, I wish I could just chew it like chocolate before swallowing it. Unfortunately I am instructed to swallow the pill in whole. So there is no way for me to enjoy eating it like chocolate:-( I think the reason of swallowing in whole is to allow the supplement to be released gradually in the stomarch to make it more effective. If we chew it into pieces then the supplement will be released all at once which is not so effective. We also refer this gradual release mechanism as "buffered". One example is "buffered vitamin C".
The Cyclosporin pill which is taken to prevent GVHD has a very interesting smell. It smells like "Petai"(Stink Bean) and coincidently it is also coloured like "Petai" which is green. We normally cook the "Petai" with "Sambal Udang"(Prawn chili paste) to make a dish called "Sambal Udang Petai"( Stink Bean with Prawn Chili Paste). It is a very delicious Malaysian food.
Everytime when I just about to eat the Cyclosporin pill, how I wish someone could bring some "Sambal Udang" to me so that I can add the Cyclosporin into it to make a dish called "Sambal Udang Cyclosporin"(Cyclosporin with Prawn Chili Paste) for me to enjoy in the wad:-) If you have no idea of how the dish would look like, see the picture below.
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