Saturday, April 12, 2008

Better than life...

Alright, I am going to try to recap everything that had happened since the day I came to Singapore for treatment, as the other post was written a little hastily and missed out a lot details (that, and I have forgotten what I have written in that post). Well, if you’re too lazy to read just skip past the part that you think you have read ha-ha! And if you are too lazy to do that too, just skip to the 3rd [*], that’s the important part… I think.

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On the first day I was admitted to Mount Elizabeth Hospital (13th of March, Thursday), I had to undergo a minor surgery to insert a new line on the left side of my chest and remove the chemo-pod on the right, for back then while I was treated for relapse in Malaysia I was having an unidentified cause of fever for quite some time and at the end the suspected cause was an infection in my chemo-pod. The long wait for the fever to subside during my treatment in Malaysia, which didn’t of course as one needs to remove the chemo-pod first, was the reason for the delay in me going to Singapore to seek for further treatment.

Back to the minor surgery, I thought it wouldn’t be much of a problem at all as the general anesthetic makes you go soundly asleep and the next thing you know, voila, all is done when you wake up. Perhaps some pains later from the surgery, but nothing to worry about I thought. But this time around the general anesthetic gave me an incredible nauseous feeling the moment I regain consciousness and this is not something I expected, as normally for me having general anesthetic seems like taking some nice drug which allows you to sleep nicely and all (then again, those “drugs” give you a massive headache afterwards too ha-ha). But this time around when I regain consciousness I was struggling hard just to control not getting nauseous, and yet the nurses were pestering me to wake up and asking me to do something or another which was all a blur then to me. If I could talk then I would have just ask them to let me sleep in peace… I mean come on, I just undergo a surgery!

The next day I was scheduled for a cardiology test to check if my heart was strong enough to take one of the chemotherapy drug that was suppose to be given to me later on in the day. The moment I woke up I realized something wasn’t quite right, as I was still feeling dizzy and I was sure the general anesthetic effect should have been gone by now. Though the hospital treatment and technology here is generally much better compared to back at home, while I was being wheel chaired down to the cardiologist department I realized one thing better about Gleneagles Hospital back in Malaysia compared to this hospital:

Back in Gleneagles the patients and hospital staffs have their own service lifts, around 6 to 8 in fact that takes you from the ward to all the facilities in the hospital (surgery room, x-ray, etc) and is located away from the lifts used by visitors, meaning that the patients will almost never see any outsiders in their path; over here though there seems to be only one service lift and this lift is located together with the visitors lift (they use a key to enable the usage of that one lift), and not only that, the corridor to the facilities (that’s including the surgery room) is the same as where every outsider/visitor walks through and flow. I don’t know about you guys, but it seems really weird to me to see a Coffee Bean stall just beside you while you’re being push to surgery room or wheel chaired into some department. It’s like you are in some shopping mall, but I am in a hospital! Is my mind playing tricks on me?!!

So having the dizziness and headache I went through the cardio test half asleep, once in awhile being awaken by the cold gel-like substance on the detector. I tried to take in as much data as I can about what was going on though, as it was my first time seeing my heart pumping on a screen, which was kind of fascinating I must say, ha-ha! The test result of my heart turns out that it wasn’t strong enough to take in the chemotherapy drug mentioned, and with that, the doctor decided to cancel that drug from the treatment plan as it was better to let the heart rest and get ready for the transplant than risking it getting anymore weaker than it is now. Hmm… I wanted to go: “YES! Less chemo drugs!” as less drugs meant less side effects and stress on my body, but… at the same time the treatment being less potent may have it’s negatives --- less effectiveness perhaps. Then again, the doctor said that the gain is much more than the negatives, and since doctors knows best, I guess that’s one less chemo-drug to worry about.

With that test result out I then started my 5 days of salvage chemotherapy treatment, which involves a chemo-drug that runs for 20 hours and administered for each 5 days, and another one that last for 45 minutes (I think…) for 5 days. In all honestly the chemo-drug that runs for 20 hours was a real pain. Maybe it’s just my mentality, but having chemo going into you non-stop makes me feel like I am drinking poison slowly over time and thus make my whole body feel really sick and uncomfortable. And with 20 hours my body can’t even take a break at all as the chemo just keeps coming in. This is the reason why “sometimes” I prefer those stronger chemo-drugs which takes around 15-45 minutes to completion as even though they have stronger side effects, I seem to be able to rest sooner and not be dreaded by the thought of chemo going into my body. And back then while I had that chemo-drug that ran for 24 hours for ONE day I thought it was really suffering, imagine 5 days of 20 hours now.

And it wasn’t soon before long that I realized why I was still having the dizziness and headache even after resting for a day since getting the general anesthetic side effect. Once again the headache and dizziness was caused by the instability of the cerebral fluid or something like that by the lamba puncture procedure, which I had experienced before previously. It got worst with the chemotherapy and that made me stay in bed the whole day as even if I just lift my head any higher than the sleeping position, it will give my head a great deal of pain and dizziness, and with that dizziness it makes me nauseous (nauseous from the dizziness, not the chemo). And though I was protected with many anti-nausea drugs, which I really thank God for, yet I could still feel as if the chemo-drugs are swelling up in my brain which makes me hard to sleep and rest, especially since then I “was” always in a sleeping position. I had to switch my head position often just to find the perfect spot where I could sleep peacefully, as weirdly each time I position my head differently on the pillow I am able to get some sweet rest.

Even though eating “should not” be a problem, as I wasn’t feeling nauseous at all (though appetite wise, it wasn‘t really good during the first week where the chemotherapy was administered), I can’t eat solid food as I can’t stay longer than 5 minutes sitting up. Thank God for nutrition drinks which could sustain me then, as one can gulp down a cup in less than a minute, therefore sparing me from having to be fed through IV drips.

To add to my problems of immobility and pain from the headaches and dizziness, I developed a severe rash on my body on the 5th day of my salvage chemotherapy treatment… just when I thought I could avoid this side-effect which was mentioned by my doctor, as he told me that I may develop rashes from this chemo-drug. It seems really mild at first, just like the allergy I have when I transfuse blood platelets which was just itchiness and some bumps growing on the skin, so I was scratching my back (which was the starting site of the rash) and thinking that after a while it will go away. It didn’t --- instead it started to crawl up towards my whole body and eventually most of my whole body was red with rashes. Eventually the rashes that were formed on the palm of my hands and sole of my foot were the ones causing trouble, as they hurt when you exert pressure on it (though in my opinion the rashes on my arms were the more scary looking ones). And later on I realized how severe the rash was on those spots when the skin on them started to peel off, like it got burned or something.

And the problems of immobility just doesn’t stop there. Back then in Malaysia when I had two infusion pumps I was already like: “Woah, so hard to push!” Right now I have a total of a maximum of four infusion pumps to push around if I ever need to move about. There are four of them this time as they needed to run in the hydration, the chemo-drug, the antibiotics all at one go. The toilet having a badly designed ramp into it isn’t helping much either --- for a sick person to push all that weight over a bump to enter the bathroom seems almost impossible, which was why I need to trouble my mom to stay overnight here with me in the hospital in order to take care of me. With all those pumps running at one go, and red and green lights blinking on it all the while, it seems to lit up like a Christmas Tree at night. The other reason why I needed my mom to stay overnight with me was the fact that over here you need to calculate the input and output of my body quite accurately; because of that, even with a nice toilet here I seldom use it as most of the time I urinate inside the erm… bottle like thingy to do the measurement. I guess it’s a blessing in disguise as pushing the pumps all the way into the bathroom seems more of a hassle anyway. Then again, it really gets annoying when the nurses keeps asking you about your input and output all the time, especially if you can‘t remember what the volume was or when you take in a lot of food and you need to start thinking about what you ate one by one. If the input is very much more than the output they will inject me with this drug that would induce me to urinate, and that causes me to need to use the bathroom… I mean bottle… about 3 times in a row in a span of 30 minutes or so, and to add to my problems they do it while I am still sleeping in the morning… of all the times. Thankfully the nurses were more considerate later on and gave me the drug only when I am wide awake.

~Oh, a side note. the doctors here in Singapore somehow always seems to tell you the worst case scenario of everything that they are doing. For example, before the surgery for the insertion of the new line the surgeon told me about what he was going to do, then later on to what may go wrong, then to the worst case scenario, which was that they need to put in a pipe through my lungs as the needle they are going to put in my veins may penetrate through them and go in the lungs, making it puff up and they need the pipe to pull the air out. Kind of scary when you hear it, but then again, it at least allows you to be prepared and not get shocked when you wake up with something other than what you expected. Same goes with the hematology doctor, who told me all the side effects that I may get prior to giving me the chemo: severe rash which I have already mentioned, mouth sores and diarrhea, just to name a few.

And talking about diarrhea…. This was one of the side effects from chemotherapy that I had never experience before even after like 18 cycles of chemo previously and now that I had it, it happened in a really embarrassing way. I think it was in the wee hours of the morning and during then my physical condition wasn’t really good, everything seems rather chaotic and my body doesn’t seems to be in sync with my mind (I think I was about to get a fever… if I remember that is). Well, I decided to pass out some gas and because of the confuse state of my mind then, I just decided to go all out without erm, like testing… if you know what I mean. Instead of the usual *woosh* sound, a loud *splurt* was heard and the first thing in my mind was: “Awww man, all the mess that I have made!!!!” Remember that I was still having the severe headache and dizziness, and it really was a hassle just to go clean up in the bathroom and trying to hold in the pain from the headache. Not to mention the mess I made on the bed for the nurses to clean up… ughh… it makes me feel like I am some kid who doesn’t know how to use the bathroom.

By experiencing diarrhea in this course of chemotherapy, I think I had experience almost all the major side effects there is for chemotherapy found in the book of childhood leukemia that I have back at home, except for pneumonia that is. Praying to God that I don’t have that as it seems the hardest to get through and cured compared to all the others.

After a few days I was able to sit up long enough to be able to eat normally, yet there came another problem --- the food that enters my mouth doesn’t have any taste at all (or drinks for that matter). Apparently it’s another one of the side effects from chemotherapy and I if I am right this should also be a first for me too. I am not sure if it’ because my tongue isn’t that sensitive to taste anymore because of the chemotherapy or perhaps of the mucus like thingy that seems to be all over my mouth that is causing almost anything to feel tasteless. Unless the food has an extreme taste -- either too sweet, salty or perhaps bitter (thank God there wasn’t any food like that as of now) I would only be able to taste them.

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Well, writing up to this point you can see that I started out my chemotherapy treatment this time at a pretty bad shape and even I myself expected that it would go all the way downhill as then I still had some white blood cells to defend my body, imagine what happens when I don’t have any left --- first thing that came to my mind was the pain from infections, the fevers that I need to suffer day by day and perhaps severe mouth ulcers --- that was what experience told me from going through heavy chemotherapy like this.

But by the amazing grace of God, and I really really mean AMAZING! The hardest part of this chemotherapy was only during the starting of it all, during the administration of the chemo-drug and perhaps plus minus a few days after that, where I was feeling quite tired and all. After the end of the last chemo, my headache and dizziness got better really quick, each day I could stay up longer and longer and eventually it wasn’t there anymore (took around approximately 3 days after the end of the chemo). After those short dreaded days, everything seems to go just fine and getting better each day instead. So fine in fact that I wish it would just stay this way so I wouldn’t need to face the fear of the next chemotherapy treatment *chuckle*.

I really thank God that He hears our prayers. I remembered the Sunday before I left for Singapore, where the pastoral council came and prayed for me, I brought out the prayer request that the side effects from the chemotherapy treatment will not be present, or at least kept at a minimal so that this treatment would be easier to go through… though in my human wisdom I was kind of expecting the worst in all honesty. But give thanks to God that though I was doubting in His power to deliver me from all these sufferings, yet He showed His grace upon me and allow me to rest in comfort and peace, peace that surpasses all understanding in Christ Jesus.

And God really works in a wonderful way. Though I was suffering from some of the side effects from chemotherapy and at first it seems like a pain to have it, yet God used these side effects to prevent me from getting other side effects that are even worst and which I fear even more. For example:

~Diarrhea was one of the side effects that I didn’t had before and by all means I don’t want to have it… I mean like who wants to get sick right? But by having diarrhea, it in a way prevents me from getting the opposite extreme of it which was constipation. The problem with having constipation is that since my platelet count is so low and the stool is so hard, I bleed almost certainly when I do my business and that gives me an infection when my white cell count is at a zero. Out of all the pain I suffered I must say that the pain from getting an anal infection would be one of the worst I have ever experienced. It’s one of the only reason where I hope my white cell count doesn’t go up as once my body starts to fight the infections on it’s own again the pain comes. The pain feels like someone is trying to tear your butt apart sideways and it wouldn’t be much of a problem if one only feels the pain once in awhile, but constantly 24/7 without any rest… that will really drive anyone insane. Not only that, there’s this itchiness inside it that makes you go crazy too, couldn‘t sleep because of it last time. By having diarrhea, my stools are soft, which prevents bleeding when I past motion and with that completely avoiding the possibility of me having an anal infection. In fact, this is one of the times where I don’t even need to worry about the risk of constipation when I do my business compared to the other times when my white cell counts drop to an all time low, as it’s always soft. And before you go: “Yeah, yeah, but what about the trouble of having to keep using the bathroom continuously and the lost of so much water causing dehydration?” By the grace of God, after the day where I made that mess on the bed, most of my motion are more on the soft side, yet not liquid enough (hope you guys understand my description, ha-ha!) to be considered as diarrhea anymore, to me at least. So in a way to summarize, I don’t have to face the trouble of having to use the bathroom continuously because of diarrhea, yet I have really soft stools (even till today) that prevents me from getting constipation, and with that sparing me from the horrible pain that I thought I would have to face. I guess the only trouble would be since the stool is so soft, most of the time when I want to urine, I seem to always need to do my motion too, ha-ha, but that’s a price I am definitely willing to pay.

~Besides that, the other side effect I mentioned was tastelessness. From what I think, it was caused by a layer of mucus that was formed in the mouth lining which makes me unable to taste anything, but… this mucus in a way also protected my mouth from getting sores as it’s quite thick. It’s thick enough that when I drink hot water apparently it becomes cold when it reaches the mucus (the mucus are at it’s thickest at the tongue and the tip of my mouth). With this mucus, my mouth couldn’t become dry at all and thus avoiding my mouth from tearing apart and bleed, as the chemotherapy destroys the mouth linings too. It also prevents food from scratching the linings of the mouth, thus causing less damage, and with that preventing ulcers from happening.

With that, you can see the two side-effects that should be troublesome turn out to help me in return by the grace of God. And God’s love and care for me just doesn’t stop there. In my mind I readily expected that when I undergo this chemotherapy session I would need to at least suffer a week long of fever. Not trying to be a pessimist here, but when I had the chemotherapy in Malaysia for my relapse it was quite a strong one, and then I had fever… what more now where I am having a chemotherapy treatment that is 12 times stronger than that. I was prepared for the worst, and it didn’t help that the fever started even when my white cell counts weren’t at rock bottom yet, just pass a few days after the 5 days of chemotherapy administration. Yet again by God’s grace the hospital treatment here treats fever really differently compare to what they do normally back in Malaysia. In Malaysia, when I get a fever the doctor put on antibiotics and does a blood culture and all that, but the fever still stays there… and I will need to take in the suffering from the fever till my white cell count goes back up again and my body could defend for itself, which would mean around a week plus. Over here on the other hand, when there’s a fever… well they still do the same thing such as giving me antibiotics and do a blood culture… but weirdly the fever actually gets CURED instead of lingering around till my white cell counts are back up again. So in short, whenever I get a fever, the doctor will start to administer antibiotics (viral, fungal, bacteria) and make sure that the fever goes away as soon as possible, which is normally just in that day itself where the fever won‘t reoccur anymore. The idea here is that the fever has to settle down as that means there isn’t any bacteria left that are causing the infections… I am wondering why in Malaysia that isn’t the case though, you mean they put all those antibiotics yet they still can’t kill any of the those bad bacteria at all? Nevertheless, I really thank God as with that, I don’t need to suffer day after day having to bear the effects of fever --- extreme shivering, then excessive sweating, then a short moment of rest, rinse and repeat… ouchies…

For once I am glad that I was wrong in my prediction and that the worst part of this whole treatment was at the start, and it got all the better as time passes instead of worst even with the white cell count down. I guess I got to ask God for forgiveness as in some ways I was actually doubting that He could carry me through this trial easily and give me rest and peace that is more than I could imagine. But God still showed His love for me by letting me enjoy in comfort more than the days where I need to suffer from discomfort and pain.

I can say that I am enjoying in comfort so much that I am actually using up my energy getting frustrated at trivial matters instead. The first would be getting mad at Window’s Vista, as just trying to set it up and making it run without any glitch or errors seems like some kind of miracle. I guess I used up one whole week with my blood boiling just trying to set this operating system up and at the end it turns out even worst than it started. Thankfully for Dell laptops there is this function to set it back to it’s original factories setting, and by resetting it back to square one, voila, somehow it “seems” better… though the laptop still hangs every now and then even till now. At least after the factory reset I got my built-in microphone to function once more, was wondering how come MSN says that I don’t have a microphone installed when it already is built in it. Hmm… then again, I lost all my Hillsong collection in my hard drive as I reset the whole thing, and a few days worth of updating and installing… but hey, at least my game programs were saved in another hard disk ha-ha, so not too bad.

The other thing that kind of bothers me is that though there are 30 channels to watch here, only around 7 channels are “watchable“… the others are foreign channels which I have no idea what they are talking about as I think they come from the middle-east. And even with the 7 channels that I “could” watch, I don’t know why but the same shows keeps on repeating and repeating and repeating all over again. I mean, if you can see the same episode of American Idol 3 times in a span of 6 hours something is wrong here. Besides that, in Singapore they seem to monopolize the live football events (except the local Singapore league) and with that you can’t watch any live soccer on ESPN, only replays and more replays in order to fill the gap they took out from the live shows. Now that I think about it, Astro really is generous as they let you see every football match there is on the sports channel where else over here you need to pay a separate one just to watch it, and that doesn’t include the upcoming Euro Cup too I think.

Ha-ha, not trying to be an ungrateful brat here, but this is where I started to realized that when I actually could “feel” bored or frustrated from things that has nothing to do with my treatment, it means that my body is running just fine. And with that, nowadays I thank God whenever boredom comes to my mind or getting frustrated with trivial matter such as the channels on TV instead of being gloomy and all, as that means His grace is so sufficiently poured out to me that my mind focuses on other more… erm trivial things, ha-ha! For when the chemotherapy treatment is really tough, most of the time my mind would be focus on just trying to get past the day as quickly as possible and I do that by sleeping all the while, not being to do anything else at all (besides praying to God, which is the one advantage when one suffers).

I really thank God that this time around I came to Singapore, as the treatment and facilities here is way better than that in Malaysia. I know, I know I mentioned it a thousand times already, but it really is that good. Firstly I am in an air-filtered isolation room so that the air I breath in here isn’t contaminated from the outside (well, back home there also was 2 of these rooms, but apparently they are also used by other people instead, over here there are much more isolation rooms to be spared). In each room the hospital also put all the equipments such as the syringes, Micropore (those white color band aids), alcohol swabs, etc inside for my own usage, so it isn‘t generally mix with all the rest. The mechanical gadgets here too are better, back home the infusion pumps always seems to be faulty and if an error do appear they pop up as weird numbers which you must interpret, over here though the pumps work more efficiently and at least the screens show words in English what the error is if they do occur (though because it‘s more sophisticated I can‘t activate the machine on my own). In terms of treatment I guess one had a glimpse of how good it was by them being able to sustain my fever where else in Malaysia they couldn’t. They really pamper you here: Like for the injections they actually ask me if I wanted the anesthetic cream so that I wouldn’t need to feel any pain; I could have my Neupogen injections (to raise white cell counts) as IV drips so I don’t need to suffer the pain (now I am back to having it injected as the effects are better, compared to 1 dose last time now I have 4 doses, injected at 2 intervals though); the doctor administers a certain kind of drug that protects my mouth lining and stomach lining (doctor says they are connected, meaning if the mouth lining tears apart so does the stomach, and most of the infections are caused by the guts apparently) at the beginning of the treatment, which was why the mucus appears I think; and not to forget the continuous hourly Zofran that prevents me from feeling nauseous at all. It’s like as long as there is something that is making you uncomfortable, and you tell the doctor, he will try to find a drug or a way to counter react it, unlike back in Malaysia where it seems that I must toughen up and bear with it as even with some of the drugs given it doesn’t seem to work. Nevertheless, with this great and careful treatment it also comes with a price, no, not in terms of money, but it’s just that they will keep bothering you with all the check-ups (checking my temperature and blood pressure hourly) and procedures (administering more drugs for example) whenever there is a complication like having a fever or perhaps when my blood pressure went up higher than normal. The check-ups are so frequent, they keep coming in and out of the room, that I can‘t even catch a wink of peaceful sleep for a moment… and I was so fatigue then when I have the complications. And even when I am feeling alright, I guess they still bother me with all the asking about my input and output (I even need to describe how my motion was in the bathroom: soft, moderate amount, brown…). Not to forget, the nurses here are strict too, mom couldn’t heat up the food with the heater we brought unlike in Malaysia because of the fear of causing a fire and somehow the nurses here like the air-con to be at super cold… so even when I put it to my liking they will tweak it back to the coldest without my knowledge--- so cold that it feels like winter, with the reason that it could prevent from certain infections… anyone can confirm this? (thank God that now I manage to get use with the cold, as in a way it prevents me from sweating when I sleep). And there is also this thing that annoys me somehow, if the nurse check my blood pressure when I am sitting up and it’s alright, then the next time I sit up but the counts are at a low side, the nurse will ask me to lie down and check again… now doesn’t that make the calculations a little inconsistent, there is a different variable in it right why all the trouble of checking again? The nurses will keep rechecking the blood pressure on both my hands, asking me to change my position, changing from the automatic machine to using the manual to check the blood pressure --- till the blood pressure is at what I normally have, otherwise they will have to report to the doctor and once again they administer some drugs to raise the blood pressure. Maybe it’s just me, as back in Malaysia they don’t really bother when it comes to the results of the blood pressures, so to me over here it seems like they are just so fussy and they make a big deal out of it (but I got to know that it is that big of a deal as it tells if I am getting an infection/complication or not… apparently).

Then again, I guess it’s with all these troublesome check-ups and extra strict care that prevents me from having to suffer even worst consequences from the side effects and infections. Hey, I should be thankful to God that they take all this extra trouble in order for me to not get sick instead of complaining, ha-ha!

Thank God though that as of now I am able to sleep more and more soundly as each day pass. I am getting less and less “interruptions” at night nowadays and even if I do I can immediately go to sleep again in peace and comfort, unlike earlier where the best time to sleep was weirdly in the morning as the nurses bother me less compared to during the night, where drugs are constantly administered and all.

Hmm… oh, and there’s this weird drug that almost got me addicted to it. The drug’s original usage was to protect me from getting reactions from a certain anti-viral drug that I was taking, but it has a drowsy/sleepy like side-effect whenever it was administered into my body. At first it was a huge problem as they administer the drug just when I wake up in the morning, which of course, makes me go back to sleep again almost immediately. The feeling is like getting a dose of general anesthetic, but not enough to make you doze of straight away just yet, thus in a way it gives you that weird, floating-sleepy feeling that seems quite… pleasant (or should i say, really pleasant). It actually reminds me of the time back in Malaysia where the general anesthetic was not strong enough to put me to sleep when they did the bone marrow tap, making me feel really sleepy, no pain but at the same time still awake. So… being the smart guy I asked the doctor if it’s possible to put the anti-viral at night just before I sleep (I guess you don’t need a smart guy to figure this out though), so that it wouldn’t trouble me in the morning. The doctor agreed, and for a time I actually kind of needed that drug just to fall asleep. And I know I was a little addicted to it when the doctor said one day that my body had no problems with the anti-viral drug thus it’s okay to remove the “weird” drug. In my mind I wanted to say: “Noooo… let’s just be cautious and use the drug a few more days…” but I know if I do that it would mean I was dependant on that drug to sleep… but that drowsy feeling is pleasant…. Arghhh!! Thankfully, I was still able to sleep normally the day it was removed though, phew.

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Okay, now on to what is currently happening around here.

As I have mentioned in the previous post, the bone marrow bank managed to find a perfect match donor in Taiwan, who was a male at 34 years of age. Though he registered himself as a donor, yet this guy has every right to reject donating, and disappointingly this dude is one of those guys. Apparently from what I heard from the Sister (they call the personals that help the doctor in this way I think) his parents… yeah, you got that right, his parents object him from donating. Weird right… I mean you are 34 years old already lorh., still need parents to decide meh. It really was bad news, that was the only perfect match donor I have left, without him I would have to resort to cord blood which doesn’t have a complete match and I need 2 of it. Funny thing is, then I wasn’t afraid at all… maybe that’s because I know God knows what He’s doing; coming to this point where you know human wisdom and power can‘t save you anymore, you will depend only on God and God alone too.

And what do you know, before I could even respond to that news the Sister than continue saying that they manage to find another 2 potential perfect match donors in Taiwan instead, the only problem would be that the bone marrow results for these two are at a low resolution, meaning that there may still be a chance that it wouldn’t match perfectly. Woah, what a turn of events! Even the doctor said that it could be blessing in disguise that the 34 years old donor didn’t donate, as in these 2 new donors, one of them was a male at the age of 21 (the other was female), and the doctor said that a younger donor of the same sex would have a better outcome (the doctor said if it's a female it will cause more problem --- all of us laughed as it seems like a really sexist joke).

The good news just doesn’t stop there. By evening --- the same day --- the Sister came again and told us that the donor had decided to donate and he can donate at any day of the year except June the 25th to 30th. Now that was quick, and instead of giving the days he could donate he just gave the date where he couldn‘t donate, how awesome is that! The first donor didn’t had any news at all for more than a week, this one took just 2 to 3 days to respond! (They found the news about the new donors days before, but didn’t told us just yet as the doctor went for a conference in Italy, thus the confirmation at the same day we heard the good news itself).

And if that is good hear this --- just yesterday the doctor got the blood results from the donor and found out in high resolution that the new donor was not a perfect match (what da, you call that good??!) BUT… the only mismatching part that was found in the donor, according to the newest research he says, is better to be a mismatch as it will give a higher chance to help to fight off the leukemia cells (this is section C). The other important part (section DR) that needs to be a match are matching and apparently for this section they say mine was a bit to the uncommon side, so at first I thought I heard the doctor said it was a mismatch for this section… but how come he seems to be smiling (he was wearing a mask though, but could see that he was happy), then he said: “No, it’s a match.” Phew! Now what do you say about that?! God’s love and ways are amazing! He do hears our prayers when we cry out to Him.

Our God really is better than life itself. If you get too lazy to read everything above, I’ll just summarize what I want to say: That the love of God is so great that no pen and paper can ever describe it completely. Just see the testimony above, and I haven’t included the love of God showed through Jesus Christ His son yet and all the other blessing I have experienced too. He has really given me a so much peace, comfort and joy here that sometimes I just feel guilty to call this a trial when I explain it to others. Not counting the sufferings at the start of this treatment, I must still say there are still some tough moments with the fever, but those are really minor compared to the vast amount of days where I can relax in comfort and peace. Oh, and before I forgot, the food here is good too and with the great appetite that God has given me, I guess you guys wouldn’t need to worry about my eating here (though my weight has been fluctuating with water retentions, manage to retain 4kg of water at the early stages of treatment, making my weight go all up to 54 kg. Now I am more stable and back to 49 kg, with each day adding 1 kg then minus it again… never seems to be stable).

Nevertheless, I still hope that you all will continue to pray for me, especially as of now I need my white cell counts to go up fast. Not because I want to go home faster, ha-ha, but apparently if the white cell counts doesn’t go up, it would be one thing or another: either my marrow is weak, which would be a good thing, or that the leukemia cells are still in the marrow disrupting the recovery and that‘s bad. Previously if I have the Neupogen injection and the white cell counts start rising it will double up day after day, unfortunately now it goes up at a constant rate instead and sometimes even drop, and this is with four times the dosage. I will need to do a marrow tap and the outcome from the marrow will decide if I will need to undergo another chemotherapy treatment or just go ahead with the transplant. Thus I will need your prayers that the leukemia cells would be gone from my bone marrow, as it will also decides if my body would be spared from having to undergo radiotherapy treatment before the transplant too. Besides that I would need your continued prayers for the donor too, as even though the marrow is matching now, to be able to donate he needs to have a healthy body and one that is free from diseases (hepatitis for example), so as to protect both the health of the donor and my own safety. Oh, and also do pray and thank God for all the good things that He has showered upon me too!

Alright, to update you guys on what will happen to me next, after the white cell counts goes back up I will need to undergo a harvestation of my stem cells to serve as a parachute (or backup in layman terms) if the donor’s bone marrow fail to graft into my body. This is to save myself as before the transplant I am going to completely destroy my own bone marrow, making me unable to produce any cells on my own anymore and with my own stem cells stored I would be able to have something to produce those cells in case the donor’s bone marrow refuse to cooperate with my body. Well, I would also have to go for a bone marrow tap as mentioned in the paragraph above to check the status of the marrow and a lamba puncture too to prevent the leukemia cells from attacking my brain instead. Ughh… will need your prayers that the lamba puncture wouldn’t give me that massive dizziness and headache yet again.

Phew and with that I finally finished updating my journal! Sorry for the wait… as I have said long ago somewhere in my blog (or did I tell it to someone instead), that if I don’t write for a long time it is either one thing or the other: either I am suffering so badly that I can’t even write, or that I am enjoying so much that I am too lazy to write, ha-ha. Thank God that it’s the latter, though sadly it’s when I am suffering I tend to write more frequently… it should be the opposite right?

Well, to end this post I will just have to say:

Give thanks to the LORD, for He is good; His love endures forever. (1 Chronicles 16:34)

Indeed, our God is better than life.

5 comments:

Anonymous said...

Hey Liang, Rebecca (your cousin) here. :) The temperature of the room shouldn't predispose you to infections, by right (well, bacteria will die if it's very very cold or very very hot lah, but that's only if it's like arctic temperatures); maybe it's for the drugs, not sure.
The reason blood pressure readings are taken in different postures is to check for postural hypotension, i.e. a drop in blood pressure when you stand/sit up as opposed to when you're lying down. That could happen as a side effect of the drugs or various other reasons. Very low blood pressure (the normal is around 120/80) also indicates shock, which is kinda like what happens when your body starts shutting down due to infection, blood loss or whatever, that's why it's so important.
The drug that makes you drowsy sounds either like morphine or one of the stuff in cough-and-cold medicines (pseudoephedrine) which some druggies use to make into methamphetamine. O.o Haha, I actually know what you mean because I got that side effect before.
Take care, we're all praying for you! :)

ju liang said...

Heya, first off thanks for clearing up some of those questions that are in my mind, and not to forget for all your prayers too!

At least now i will try not to get annoyed when they keep rechecking my blood pressure and changing my position haha!

Anyway, i think the drug that makes me go sleepy/drowsy sounds something like "ben-na-dril".

And yes, it really is addictive.

Once again, thx for the info and prayers. Our God is great!

Anonymous said...

Hey, yup, God is great indeed! :)

I think the drug you mean is Benadryl, it's actually for cough suppression (so you can get it from the pharmacy without a prescription too) - do you get a lot of coughing?? Apparently the reason it's addictive is because it's actually an opioid derivative, which means this drug is like a relative of morphine. Haha, explains the drowsiness, anyway.

Ooh, happy belated birthday btw! How did you spend it? Take care, and God bless you! Rebecca.

Christopher Lim said...

hey ju liang , I really appreciate your detailed blogging. i read every single part of it and it really helps the rest of us in our faith as well to see your victories through everyone's prayer!

Anonymous said...

Hey Lup Wai here.
Are visitiors allowed in ur room?
If yes i will visit u soon..
Anyway if u wan contact me, my sg phone no. is 98069714.