Sunday, September 30, 2007

day twelve-post transplant

The consultant came in today and informed a good news! My white cell went further up to 3.95 now. He said the stem cell has engrafted well and he said prepared to be discharged in less than a week. Alhamdulillah!!

I wish my appetite is also like this!!!!!

day eleven-post transplant

As I told in my previous entry, the 2 weeks period after the transplant is called engraftment period where the donor stem cell find its place in the marrow and started to actively produce normal white cells.
Today, my white cell level is 1.1 (significant increament from yesterday's result). Good, but I still need the platelet transfusion since the level is below 30000.
My appetite, not much changes....

Friday, September 28, 2007

day ten-post transplant

There has not much changes today. When I go to the toilet and for a shower, I can feel the pain was so much!!. At one moment I just stand and stay still to let my body slowly absorb the pain and let go. The next hour, I just had my self in the most comfortable position in the bed and had my breakfast. In trying to let the pain slowly goes off, I fell asleep and only wake up when I really need to pass out my always easily filled bladder.
My total white cells count today has increased slightly to 0.22. I hope it will go further...

Thursday, September 27, 2007

day nine-post transplant

My mood and appetite are still the same. With all the aching and my proctitis (inflammation of the back exit) problem, I have difficultty of moving around. My sitting position also always has to be changed. The best position is lie flat and quite.

My hairs started to fall off today and left my head with patchy hairs. I have ask the nurse to shave my head this afternoon.

Sorry, if I didn't response to call or sms.....

Wednesday, September 26, 2007

day eight-post transplant

When I woke up this morning, I felt my mouth really dry and sore. It was a bit painful in some part of my tongue and cheek. I could see from the mirror that the mucositis has slightly worsened. Talking is bit painful but chewing and swallowing are still okay.

I had slight bleeds while passing motion this morning. The pain down there continues since yesterday. It makes my position and movement a bit difficult.

I developed low grade fever since yesterday (could be neutropenic fever i.e fever cause by very low in total white cell). The doctor has started the intravenous antibiotic again.

The whole situation, togather the body aching make me less energetic and moodless, I just spend the whole morning sleeping.

Today, I will be getting another unit of platelet sine the level is still low. My total white count has gone down to 0.15 yesterday and it showed slight increament to 0.18 this morning.

My appetite?....still can't really take. The moment I try, I feel like to throw out....

Tuesday, September 25, 2007

day seven-post transplant

Today I don't feel quite right. I feel much weaker and less energy. Sometimes the whole body is aching and all the flu-like symptoms came.
The doctor came in today and informed that my white cell count is almost to nil (0.21) and my platelet has gone down to 22000 and I will need a transfusion today. Maybe that is the reason why I am getting weaker. He told me that all patient will go through the same feeling and the general condition will get better by next week. He just tell me to get a good rest and don't try to exert myself.
My appetite also not doing good. I just take usual

day six-post transplant

I had a good sleep last night. This morning I just take the usual breakfast- few slices toasted bread with 2 boiled eggs. I prefer the menu since that is the only choice. I have started taking Enercal (nutritional drink) eventhough the taste is like a baby's milk.
The whole day, I just rest in bed since I started feeling a bit weak and I am less energetic.

Monday, September 24, 2007

day five-post transplant

Wow..Alhamdulillah! Each new day is a great day. My persistent headache and dizziness were almost disappeared. I don't have them anymore. At least I can focus on a few things that I have left behind since last week. I have left making entries in my journal (book) since I was really 'down' last week. Now I have a lot of pages to fill, retrospectively. Compared to blog journal, the writing of story in the book journal is much details and I want to make it something really precious in my life. Something that can remind me those sweet and difficult days when I read it in future.
My total white count has gone really down, to 0.2 and it will go until zero before it will start to crawl up again around day 14 post transplant which is a week from now. This time around I really have to be cautious. The fever may come and I may a bit weaker. The platelet (clotting cells) is now around 50,000. There is a risk of platelet transfusion but see how it goes. I don't have any bleeding tendency right now.
A few of my friends and realtives had called and sms me that they really want to visit me. I have to say that it may not possible at this moment since I am strictly isolated and the risk of contracting any infection or even common infection is very high at this time around. The simplest infection to normal people may be really dangerous for me. This is true for may be another 100days and I am afraid that I would have to restrict visitors. It was so sad when someone wish to meet during this coming Hari Raya celebration. But its for my own good and I hope everyone will understand. I really appreciate everyone's wish...someday later, I ll make myself the one who is going to visit them...

Sunday, September 23, 2007

day four-post transplant

Alhamdulillah. Each new day is giving me some improvement eventhough my appetite is still lagging behind. I can now take rice but in small part and I can take the main dish (eventhough not as good- cannot complaint so much). I think its my appetite that still controlling my taste to all food. Maybe the result from many drugs that I am still taking. My blood pressure is more stabilized and within the normal range.
My oral mucosa has shown some inflammation as being expected. But so far it is not that symptomatic. When the guy next door had it, it was really bad for him and he has to be on parenteral nutrition (through intravenous line). He can't really sleep since the saliva was too much as a result of the inflammation. Anyway, I hope it will not go too much further and I keep continue using the recommended mouth wash.

Saturday, September 22, 2007

day three-post transplant

Look that everythings got better today. The headache and dizziness are getting much less now. Anyway the hot flush while the antirejection is running can still be felt. Similar when the nurse is giving the intravenous Methotraxate. I can feel the throat is burning. So what I usually do is I will take ice or ice cream when the drug started to be infused.
However my appetite is still not doing good. I could only take not even a quarter of the rice. More often I just skip the meal and just eat a lot of fruits and biscuits. Or may be I have to take supplementary nutritional drink later.
Talking about food, I cannot simply take anything. Obviously the raw, undercooked food, spicy, preserved food, salads are among those. Even packed foods that you may think not prepared and questionable. Hmmm...I can't even think of it, because when you start thinking, your craviness will drive you crazy. But, I still not understand on certain restrictions on foods without reasoanble facts. Yes, I understand the basic principle on the importance of food cleanliness, the important of fully cooked foods and the effect on my health but there are still some areas of restriction that may just raise my dissatisfaction, especially when the time that you are really cannot take the given food and for sometime that you feel crave to eat your favourite one.... I don't know. But the sure thing is that I have to follow these rule for next 1 year and so..!!!!

Friday, September 21, 2007

day two-post transplant

The second day seems not much changes with my appetite not getting any better. I still have 'no feeling' to eat especially when the meals served oil-cooked food. So, most of the time I just wacked the fruits and biscuits.
Not suprisingly my weight went down from 80kg to 76kg now. The dizziness remains but I think that would not really disturb me. The blood pressure also remain fluctuating and high and the doctor has increased the antihypertensive.

The late side effect of the chemotherapy to my oral mucosa has not commenced, same thing to my hair. My baldness in the picture was because I shaved it before my admission, as being advised by the nurse, so that I will not mess the pilllow everyday when the real hair fall happened.

The guy next door is going home tommorrow. Wow, good to hear the news. And its been a motivation for me to stay calm and positive that I will too, when the time comes. I heard he has passed the most difficult time for him when he had really bad oral mucositis. Hmmm...

Wednesday, September 19, 2007

day one- post transplant

Today, the day went okay. I woke up with enough sleep and not much disturb from frequent urine business. The side effect is getting less except that I still could not take food except fruits and fruits. The nausea still continues. The team came in today and they seem quite happy with my progression. To reduce the GVHD (Graft Versus Host Disease), I will be given Methotraxate injection on certain days. My blood pressure still on the unstable side which one of the side effect of the anti-rejection drug that I am receiving.
I keep praying to God and tell my self to be calm and accept the new cells and hope it will grow and continue growing.
*to all my family, old and new friends (regardless I knew them or not), my Maxfamily group, the MaxFoundation and whoever readers, thanks for keep following my progress and your continous support will always be in my heart

day zero- transfusion day

18th September 2007

I woke up with residual distress feeling from last night nightmare. I didn't know why I am getting all those bad and distressing dreams lately.
Anyway, despite those feeling, I felt much better since I know the effect is washing away and today will be the day I am getting the new cells from my brother. Thank you, Lie (prounouce as li :the childhood name I use to call him). I didn't know how to express and how much thankful I am to have you around and your caring, and have the same feeling of how important the 'cells' will be to me.


TRANSFUSION IN PROGRESS: my skin getting darker but my hair still intact (maybe next week)

The whole process only took less than a couple of hours and as being expected it was uneventful. To let me more receptive and calm, the doctor gave me sedative and when I got up, everything was over. The rest of the day I felt much better and better.

sixth and seventh day of chemotherapy

Hi again
Good that I can write again.
It has been days that I didn't bother to know what happened outside my own world. I never knew the second type of chemotherapy had really put me down physically and emotionally. From the moment I felt the effect, every second was too long to a minute and every minute seems too long to end a day. The nausea, vomiting and retching, the burning sensation deep inside the throat, togather with headache in the extreme coldness of the room made so distressing. I tried to lie and sleep in the bed with any position that could possibly comfort myself and hoping that I could just closed my eyes hoping everything will over.
Apparently, it was not that easy. The shortest comfort that I could get only be replaced by another cycle of horrible feeling. At one moment that I really couldn't bear it, I ever thought that could this possibly end at anytime and I just want to go home and fetch my son from school and even bring my daughter to go for a car ride and to be in the days I had before...
My wife told me I just have to continue since I ve been this far and with her support and my rational, I said to myself that I HAVE TO SUSTAIN AND JUST TOUGH IT.
In keeping my Faith, I let my self always think that God have gave so much all this time, for most may be I didn't realize....and I should not ever think that this moment He ever forget about me.....only to let me more REALIZE OF HIS PRESENCE....ALHAMDULILLAH (Praise to The Almighty GOD)

Saturday, September 15, 2007

fifth day of chemotherapy


Again, I slept early last night. I can't wait to just lay myself in the bed and hope that everthing is over. The nausea is getting continous now and my appetite also was not showing any better. The nurse has been telling me to stay stronger and try not to think about it.
I woke up with some residual sleepiness. After shower, I tried to do other things or continue my drawing, but I lazied my self again in the bed until mid morning.
My brother is on the opposite ward and through my wife, he is having a generalized bone and bodyache following the injection (the bone marrow must have been more active now ). I should really thank and appreciate him for being so kind and willing to take all the pain just to let me have another chance of possible recovery. He told me: Remember! 18th Sept will be the day that 'we' will be united. I wish that our family relationship will getting stronger and stronger....
And also, thanks again to everyone outside there who has always being supportive.....
Opps,....the consultant just popped in and he asked me how do I feel today. He told me that the other type of chemotherapy will start after lunch, and gave some tips to manage the side effects and to get more comfortable for the rest of the day. Thank you, doctor...

Friday, September 14, 2007

fourth day of chemotherapy

I slept early last night because I didnt feel quite right. I felt palpitation and nervousness more often than I expected and the worst thing was that it keep my blood preesure swinging. I took sedative pill to alleviate the symptoms and rest the whole night.
The team came this morning and informed that today will be the last day for the first type chemotherapy (IV BUSULPHAN), and tommorrow they ll start the second type (IV CYCLOPHOSPHAMIDE) for 2 days. Then, I will get a rest for a day without chemotherapy before I am ready for the stem cell infusion.

I took little lunch as my appetite started to loose and I felt more nauseated. I just filled my stomach with fruits and biscuits so that I ll still have energy. I continued my drawing just to kill my time.

Thursday, September 13, 2007

third day of chemotherapy- the first day of Ramadhan

I was awaken by the alarm set by my wife in early morning as today is the first day of Ramadhan and she has to take the early morning meal (sahur). I just wait another half an hour to stay awake and wait for solat. The hot flushes from chemotherapy which usually happens late night and very early morning was not that bad anymore, but I didn't wear my jacket despite the extreme coolness (as complaint by my wife) in the room.

My brother came in today for admission. He will be getting the GCSF injection (hormone to stimulate the stem cell production and overflow into the peripheral circulation) starting from tommorrow and the next 3 days before he undergoes apharesis (something dialysis) to collect those precious cells. Oh.... (forget to tell). There was a change of plan. The harvesting of stem cells will be done through this method instead through aspiration from the pelvic bone marrow ( since there is a mismatched red blood group and the technical part of it will make the actual amount of stem cell from marrow aspiration is far less than from apharesis).

Apheresis machine

This is Mr Pumpman that I mentioned about. ('He' is much taller and heavier of course, and also clumsy)

Wednesday, September 12, 2007

second day of chemotherapy

I slept early last night when I started to feel uncomfortable. I didn't know how to describe the feeling but it was like I was going to throw out and the whole body especially the face was burning inside. Something like 'hot flush', maybe. I took a lot of plain water as advised and togather with the 4 pints of fluids running into my body made me awoke and went to the toilet 5 times last night. Yet, I still feel fairly fresh when I got up this morning. The dizziness and imbalance are always there.
I want to bring your imagination into my own experience.
1. The doctor has started you on 4 pints of fluids (thats about 2 litres)
2. And he asked you to drink lots of water (which I did)
3. As a result, you are going to the toilet (British: lavatory) more frequent than ever!
4. And imagine every time you want to do so, you have to push and manouver the tall and heavy infusion pump ( I called him Mr Pumpman) to the toilet against all corners
5. Then taking your place and correct your position and be more careful (remember you are still attached to the pump with multiple lines) trying not to overstretch them
6. After you are done, going back to your original place breathlessly.
7. Repeat the sequence from number 1 to 6 about many times a day and night.

Hah...Final step...don't forget to measure the amount you pass out every time you do it!

I found it interesting and discovered that it could explain why my blood pressure swing up and down.(hehehe) again....
Nothing much to mention tonight. I just want to greet RAMADHAN to all muslim friends and whoever readers. As for me, I might not be able to join this year fasting month. Anyway I hope I could get all HIS blessing and 'Great Gifts' during this one month and hope I will not missing Ramadhan next year. (Insyaallah.)

Tuesday, September 11, 2007

the day chemotherapy started

I woke up as usual from a good sleep. (Maybe from the sedative they gave me last night). Today the chemotherapy will start. At 715am, the nurse gave an injection of anti-emetic half an hour before infusing the chemotherapy agent.
The chemotherapy regime will be four times a day for four consecutive days. Each dosage will start at 800am and subsequent will be every six hours apart. Each dosage will take about two hours to finish before the next dosage follows.
So far, I don't have much problem. The literature tells everything. May be too early to say. Anyway my hematologist keep telling me, be positive and hold strong.
Thank God, my laptop was back to normal. I was almost really upset since last night when the laptop didn't want to work..for no reason.
After the second dose, I started to feel hot flush and the dizziness and imbalance started to be more pronounced. So, I spend most of the time in the bed. Anyway, I still able to have my shower independently and performed every 'solat'. My appetite is still doing good.
Every night, before sleep, I ll do my blog entry and reading through all the comments make me feel that I have a lot of people around watching and concerned about me. Thanks everyone.......

Monday, September 10, 2007

one day to chemotherapy

As usual, I started my morning with pray and reciting Quran, before then the nurse will make up my bed. While they doing their duty, I took the chance by doing some light physical and stretching exercise and off course blowing the ballon.
Today I will start taking a lot types of pills.i.e. anti-convulsant, antibiotic, anti-fungal, anti-virus, liver protective pills, gastric ulcer protective pills. The nurse was quite excellent in explaining hoping that I will get to know each pill and its purpose and by knowing well each of the pills will improve the compliance. I guess so...So this morning alone, I took about 10 pills/capsules in one go. Just gulp... it.GULPPP......I was also started on 4 pints intravenous drip to get more water into my body...that means I will be attending the toilet more often .Therefore, starting from now on, I have to chart down every single thing that come into and out from my body.

I just laid in my bed this afternoon, listening to music from the MP3 and at the same time watching whatever program on TV . There are only basic channel and most of the time aired cartoon and long time ago drama. There is a VCD player, but not interested since I have seen all the movies before. Aaaa...maybe I can start drawing something...
Nothing much tonight. I just had a short videocall with my son and daughter at home. They seem fine. As usual they were asking a new toy, as if that I can buy on my way home very soon. I am little anxious toward the chemotherapy tommorrow. The dosing will be 4 times a day and 2 hours each infusion. I am not sure what kind of feeling that I ll get when the chemotherapy start. The side effects varies among patients, told my hematologist. He advised me to be strong, always think optimist.

Sunday, September 9, 2007

2 days to chemotherapy

AM: Alhamdulillah (thanks to Allah The Almighty). I woke up after I had a good sleep, except that I was awaken in the middle of the night, when suddenly I felt really dry in my throat and started coughing away.
The morning routine started with brushing my teeth with supersoft tooth brush (Bioten) and gurgling with Bioten mouth wash. I am starting these routines to get use to it, and this will help me a lot during the chemotherapy and post transplant period where I may get some 'oral mucositis'.
I will then do my pray and spend about half an hour of reciting Quran. Since I was advised to continue doing some movement in the room, I do light physical exercise apart from blowing a ballon for breathing exercise.
This morning, my doctor came in after I had my breakfast. He inspected the Hickman's line and seems that he was quite satisfied except that the cannula entry was a bit near to the nipple and its slightly inflammed. He then informed me that some medication will start tommorrow i.e. a few types of antibiotics and anti convulsion (drug to prevent fits since the chemotherapy may trigger some episodes). He told me that the latter will cause some gorgy feeling and I hope it would not stop me from writing.....
I was so frightened for a while when suudenly my voice was hardly came out. I tried to throw it out but still only funny sound that heard. I took it calmly thinking that it will goes off momentarily. The nurse assured me and advised to take warm water. In the mean time, she will get the on call doctor. Slowly it got better. The other problems were I tend to get palpiataion and my blood pressure has been fluctuantly up and down and now it has sustainly on the higher side. Thinking that I may have anxious and not enough rest, the doctor gave me sedation pill. I went to sleep after my lunch and pray and it really pays off. But before I went in to sleep, the nurse gave IVHydrocort and IV Piriton, just in case the voice problem is cause by some anaphyctic reaction. The symptoms are less now but my blood pressure still on the highr side.
Oh yes..I need to introduce my new friend and to be my constantly accompanying me whenever I go (even to the toilet). His name is 'Mr Pumpman". He is a handsome and tall standing multiple infusion pump that supposed to deliver whatever medication or fluid that I am taking in to mybody. Sigh....It is still dificult to move around and I will tried to get more familiarized with MR Pumpman....and I better be a good friend of 'him'.
My wife came from home and the good thing was she brought mom's cooking and my favourite currypuff (karipap). I really want to 'wallup' since the next few days I won't be able to since I ll be losing some appetite.
I went sleep early to have enough rest and hopefully my blood pressure will calm down......

Saturday, September 8, 2007

3 days to chemotherapy

Today I woke up much better. The pain at the Hickman catheter site was much less, and my movement is not like a robot anymore. I can move and turn my head more freely. Not like before whenever I move, the pain will initiates.

The routine started to familiarize. After shower, I ll have my breakfast before the staff nurse will do the dressing around the catheter.I took the chance of my free time to write and do some drawing....yes.. drawing have been my hobby of my early days. But after being a doctor, I left it behind sometime ago. I think this is a good time to start back. Hope that I can still draw well and not losing my touch.

My good friend also gave me a really nice writing book and I think its going to be good if I could use it as another chapter writing and incooperate with some I have a lot of things to be done. Hope I still have a lot of time like now. I knew that the patient next door developed 'bad mucositis' i.e. inflammation inside the mouth,following the chemotherapy and he was not able to take his food and he also has a lot of saliva for him to manage. For that reason, he may need nutrition through the intravenous line. Sound scary...

I would say that my challange may have not come yet since the chemotherapy will only start next week. I pray that the side effect will not be that bad and tolerable so that I can still continue doing what I like to do. As my friend always remind me that God will not challange things that you will not able to bear it...if He is doing so...He will give the courage and strength for us to hang up. Keep yor faith stronger....and pray a lot.

Friday, September 7, 2007

4 days to chemotherapy

I woke up quite early today when the staff nurse was busy setting the pre-procedural antibiotic infusion. The antibiotic infusion lasted about an hour.
At 715am, I was pushed on the wheel chair to the ambulance that will carry me to another hospital for the Hickmans catheter insertion. I can't described the feeling of being to the hospital that I used to work and walk around, being pushed to the procedure room on a stretcher along the hallway...I keep smiling to myself ... thinking this is funny and interesting experience.
Upon arrival to the radiology unit, I was approached by the respective radiologist and he explained the step-by-step procedure of Hickmans catheter insertion. I was given a sedation but due to the anxiety, it did not really work. The whole procedure was quite smooth except the final part when the cannula was being pushed hard under the skin of my front chest wall before it enter the right vessel.I can still feel the pain now. Anyway, thanks for the radiologist for the swift procedure.
I went back to the hospital and really dozzed off during the journey...(the sedation just work). I continued sleeping until noon when my stomach called for food...(since I was fasted overnight). The next hours was a painful time when every movement gave me the sharp pain along the tract of the canula under the skin. I guessed the pain thing will disappear in next couple of days.
Tonight, I called my home using the video call through the internet. Thank God, it works. Both of my kids were so excited to see me in the computer screen...and even asking me to kiss them on the camera! I knew I will not missing them so much.
The next 3 days will be my rest day. The chemotherapy (conditioning) will only start on Tuesday.

Thursday, September 6, 2007

5 days to chemotherapy

Nothing much happened today. I was placed in the room and after I had the 'cleaning' shower, I was allowed to stay ONLY in the room. The nurse then gave me the orientation and some other instructions, the DOs and DON'Ts. A few blood tests were taken and she put me an intravenous line.
Lunch was served and before the food finds its end, tea was served. And then again, the dinner followed in less than a couple of hours from the last 'fuel'. Hmmm...seem my appetite is doing good.
I have no company tonight since my wife went home to settle a few things. She ll come back again tomorrow. I had a chat with my good friends over the net before I felt quite sleepy and exhausted since I did not get any nap today.
Tomorrow, the Hickmans line (special intravenous access) will be inserted and it will be done in another hospital. So I ll be fasting overnight. I got to get up early since they will be leaving early in the morning.
OK. Time to go now...I ll write again tomorrow.

the day in room 27

WOW, I am writing from my bed inside my BMT room at a seventh floor of the hospital. It is such a great thing to still get connected.
I came in today, 6th of September. The day that I ve been looking forward and anxious to go through. My wife, kids, my brother and sisters came along to give company and support. I was placed in the isolation room number 27. Before I was asked to clean myself and not be allowed out from the room again, I took the opportunity to stay awhile outside the ward and spend that last little moment with my family before I would be able to hug them sometime much much later. It was almost the end of visiting hours when everyone have to say good bye and gave me warm hugs. My mom gave me her long hugs and there was nothing that I was able to say other than feeling the moment that I know she is really care about me. My two kids acted as normally as if that I ll be back home soon. I guessed that they are still young to understand the whole situation. The most, they will only be asking why it take so long for me to go back home. Anyway I have set up a video call through the net and I am sure they ll not miss me so much and vice versa.
How do I feel now? I don't know. Just now I was really sad when my kids and family disappeared from behind the elevator. About the next few days, I don't really feel anything. The anxiety,the fear...maybe it is yet to come.
But as I had promised to my self, I will always be smiling on my lips and in my heart, whatever the physical and minds are suffering. If not so, at least I will make sure that other people smile at me..................

Sunday, September 2, 2007

welcome back my specky

I started using contact lenses after I finished my Masters. Apart from trying a new way of seeing things, I was also attracted to the facts that how easy life can be without the hanging glass right in front of my face. I was not demotivated by the dificulties as a first time user, rather I was adamant and tried hard to make the tiny and flimsy membrane to stick on my eyes even it was like hours to do it. Practice make perfect.....and I never regret of trying this new thing since I could feel a lot more freedom without anything blocking my face.
Anyway, from the moment that I knew I have to go for the transplant, my first thought was that I have to go back to my glass wearing. Besides that I may risk myself to get eye related problem, the side effect of dryness of the eyes from the chemotherapy may not allow me to continue using contact lenses anymore.
There goes my new look. Most of the people were surprised since they never knew that I am shortsightedness and always on lenses. A few told me that I am funny with the new look but others said that I looked more distinguished. Whatever lah! I never bothered and obsessed over my changes anymore.... since nothing is more important than getting back your good health.