A short note before I start:
I was wrong even about the short form for “TBN”, heh paiseh~! A direct reference from my cousin’s comment:
“I think what you were referring to is TPN (total parenteral nutrition); parenteral means a non-oral route, e.g. intravenous”
And there you have the real meaning for the space food I had, from a doctor no less, haha!
I don’t know if it’s just me…
But to be totally honest there are times, even with God’s blessing and love so significant throughout this whole process of recovery that I myself consider it to be a miracle, I still do get frustrated and start to complain whenever suffering comes my way.
And the worst thing of it all would be that this negative energy always seems to be aiming towards God. I’ll admit it’s one of the worst habits of mine and I really need to ask for forgiveness on this matter over and over again. It really reminds me of my schooling days, where whenever I get bad results for my exams I tend to blame God for not helping me as I have I prayed to Him about it, when in the first place I did not even bother studying at all. And we know that our good God give good gifts to His children; not spoil them by simply lavishing our request that most of the time we have no idea what we are asking for.
This came to me because of the hot flushes I experienced nearly every morning since the 6th of June. It really is suffering and uncomfortable, as if my whole body was going to blow up from within due to the unbearable heat. I cannot think well as it makes me feel all anxious and nervous, my gut seems to be in a wrecking mess with the heat and I keep having the need to go to the bathroom due to that, my whole body hurts as it feels too hot then cold all of a sudden, and nothing seems to be able to ease the pain and make me relax at all. Initially it felt like it would get better as the days pass, as the heat seems to subside during the time I was sleeping from 2am to 6am, but later I realized that those hot flushes were altogether different from the one that I am mentioning right now, if am right, the hot flushes that comes while I sleep is caused by one of the immunosuppressant drugs that I am taking.
One day I just couldn’t take it anymore and asked God: “Why are you doing this to me? Can’t you just take these hot flushes away? I can’t stand it anymore!”
But it was then the Holy Spirit prompted me…
What is this compared to having an organ failed because of a serious graft versus host disease?
Compared to the leukaemia cells still being present even after the transplant?
Compared to the donor’s bone marrow not even grafting to my body at all?
Though this hot flushes feeling was a pain, at least it only lasted in the morning and by 12 noon or so, it’s gone like the wind. In fact, when the feeling is gone I don’t even think about it anymore till the next day when it all happens again, and with that I get scared and a little worried seeing how I could just forget the pain that I have gone through in less than an hour… it makes me feel really ungrateful I guess.
And with that, I am all the more appreciative of the love and grace of God, who send His one and only Son Jesus Christ to die for our sins, forgiving us not once but countless times as long as we repent and confess our sins to Him. Otherwise we are all eternally doomed, seeing how easily one can sin.
I’ll need to be humble and continue to grow spiritually stronger each and everyday, so as to not let the devil get a foothold. As to the above situation, I’ll really need to learn how to be content, just like what Paul says in Philippians 4:12-13:
“I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength.”
Boy am I glad God was merciful, as after this whole lesson that I have learned, God gave me light bulb over my head and figured out that the “hot flushes” could be caused due to the intravenous magnesium that I have been taking recently. So the first thing I did was asked the doctor to change the IV magnesium into oral tablets, and it sure did a major difference the next day as…
I did not feel the intense hot flushes anymore!!! Hallelujah!
It was a major relief. Sadly though, the most ironic thing is that I was the one who asked the doctor to change the magnesium from oral to IV in the first place. Why? Well, since in the wee hours of the morning I was already on some kind of drip, I figured out why not just save the effort of eating 3 big oral magnesium pills and instead drip it right into my body intravenously as it’s fast, effective and I won’t know a thing since I am still sleeping?
Yeah… right…
As of this published date I am eating four of these bio-magnesium pills orally 3 times a day, hard to swallow I must admit, but hey, it beats having those uncomfortable – I’m going to blow from the inside – feeling of intense heat.
I cannot stress this enough throughout this whole recovery, especially seeing from the example above about how I doubted God; that His love for us never fails, and He watches over us all the time. Our God is the perfect Father, and He will meet all our needs according to his glorious riches in Christ Jesus (Philippians 4:19).
Not that I deserve it, but God really made this whole treatment process a breeze. Yes, there are tough times, but as I always say, the amount of time I am inflicted with pain are considered short, compared to the time I am blessed with comfort and peace from our amazing God.
God’s amazing grace and blessing kept coming in waves:
On the 30th of May, this was Day 18th since the day of my transplant, my platelet count started to rise up and its way ahead of the predicted time estimated by the doctor which was Day 25th. The platelet count raised at a really quick rate too and it was a very good sign as if the platelet counts go up, it means that the body is recovering at an excellent pace and it is a good indicator to check for any GVHD attack, as if the platelet drops at any time, it means I got an attack and the doctor can prevent it from advancing any further really quick. Besides that it also meant that I wouldn’t need any more platelet transfusions too, as I would need to bother more people for platelet and blood donors if my body does not generate its own platelets. In fact, around the same time too my haemoglobin count was rising slowly but steadily, plus around 0.1 a day and with that I haven’t had any more blood infusion as my body can sustain itself (sadly no one actually bothers about the haemoglobin ha-ha, but if it hits below a count of 10 I start to feel this weird headache, so it’s one of the counts that I know if it drops too low without seeing the blood report). Praise God! As though nowadays blood transfusions are relatively safe, I heard there are still reports on getting Hepatitis from it, and the allergy reaction that I may get from either blood and platelet transfusions are troublesome and suffering I must say, not to forget that transfusing blood takes a really long time too (and let’s not forget getting drugged off to la-la land to eliminate the allergy reaction, which sometimes don’t unfortunately).
*
I must say that after the transplant, with the donor’s marrow successfully grafted on my body, then no serious GVHD for the first few days, and after that having the test which ensured that my white cell count was 100 percent belonging to the donor’s, then the platelet going up faster than expected… I will have to say that I kind of got too over-my-head that I was going to be completely healed and have totally forgotten the fact on how close I was to death at the start of the relapse, thinking that everything is going to be just fine.
But it soon dawn on me that though everything seems alright right now, my bone marrow test result may still turn out that there are some leukaemia blasts in me, no one knows; medication and the doctors are the means of healing, but only God can do the healing.
The fear of how I may still get a relapse crept back to me when I heard from mom about another leukaemia patient who passed away due to infections then organ failure at a later stage. She was admitted to the same hospital as me back in
Then there is this other Arab boy in the same ward as me who has a rare blood disease and has grown a tumour on his chest. According to the nurses nothing left could be done to treat his disease anymore as the medical staffs have given him the maximum dose of radiotherapy available, thus the parents could only give up and let the boy rest by going back to their home country and enjoy the rest of his days.
Not to forget, when I first came here to
The doctor smiled and told me that though it was, well scary to know the truth, yet one cannot escape from it. It is better to know if there are still leukaemia cells in the marrow than not, for if detected early they could at least do a follow up on the next step. And I myself know that on the other hand, if no leukaemia cells are detected in the marrow there will be great joy and jubilation.
And besides, like what I, my dad and the doctor say: “Even if it’s a 99 percent failure, if God put you at the 1 percent of success, you will still make it. Percentage is just an estimate.”
Well, I prayed really hard that God will have mercy on me for this, to bring a miraculous healing on me through the power of Christ and when for the bone marrow procedure.
The first news I heard the next day was… GOOD! The doctor did a microscopic test on the marrow and found out that the marrow was clear from any leukaemia blast cells. Oh, for your info, the doctor have to actually go through slide by slide individually to check for any leukaemia blast cells for this microscopic test haha, thought they do it by machine or something (man, that’s hard work, I remember just looking at those plant cells in bio class during high school and that’s a pain). Hallelujah! Praise the Lord! For if even by eye one could see the leukaemia cells, the condition must be really bad I must say. But nevertheless, I still couldn’t really breathe a sense of relief as previously after my salvage chemotherapy (the one prior to my transplant treatment), though microscopically I was clear, but through a “flow” test there was still some leukaemia cells lingering around (a “flow” test can detect a million more cells compared to what the microscope does, as it’s a machine, therefore very much more accurate, sadly Malaysia still doesn’t use it). With that, I continued to pray, as the bible says:
“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.” (Philippians 4:6)
On the 7th of June when I woke up in the morning, if there was any news that I consider the best over this whole long treatment, I guess I would have to say is this:
Doctor: “We have received verbally from the lab on the flow test results, and there are no traces of leukaemia cells in the marrow.”
Should be me: (JUMPING FOR JOY) “YAHOO!!!! Thank God for the good news!!”
Well, why did I say “should be me” you might ask? Sadly, due to the effect of the “incredible supreme hot flushes that was going to bust open inside out of my body” that I have mentioned above, I was using all my energy just trying to stay in control from all the heat and keeping my thoughts from getting too anxious and nervous.
Due to that, I couldn’t express my joy and celebration and gratitude somehow, which made mom thinking why in the world do I not look happy at all, haha, when this is such good news. It really makes me think how futile we humans are… a little disturbance to the nerves here, changing the level of hormones there, putting some drugs into the system and our human body system are all mess up. Or perhaps I was just too shocked with the good news that I couldn’t get a hold of myself…
Nevertheless, when I got back to stabilizing my body system again and every now and then in quietness (to be honest, only after a few days later from getting this good news do I seem to realized the significance of it all haha, when my body became more normal), I really still can’t believe how great the love of God is, to allow me to sail through this whole transplant. It is one thing to “know” about God’s love, and another thing to “experience” God’s love and see it first hand the power and might of our living God who hears us, who hears our every prayer. As James 5:16 says:
“Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.”
I remember I taught this verse to my Sunday school Inter class on one of the prayer weeks, and it was the memory verse for the week too, but apparently I never really know the true meaning of it all. Sometimes we pray just for the sake of praying, and most of the time, as for me, I realized I pray for my own gains and not for the sake of the
On the topic of prayer, I also cannot stop thanking everyone who has prayed and are still praying for me, from my brother and sisters in Christ from Canaan Baptist Church, to my relatives and even their church members, to the church in Singapore who has never even met me before and yet through the love of Christ not only pray for me but donated their blood, and not to forget all the prayers from my friends both locally and abroad too. I used to wonder what is the difference between one person praying compared to a whole crowd on one same prayer request… God still hears right, whether it’s one person or a thousand?
At first I used the parable of the persistent widow (Luke 18:1-8) as one of the reasons: If the cruel judge couldn’t tolerate the widow because she keeps pestering him and thus grant her request, how much more our loving Father if we all cry out to Him? Later on I realized from Matthew 18:19-20 too:
“19Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. 20For where two or three come together in my name, there am I with them.”
Well, I always hear verse 20, but seldom do I hear verse 19 somehow. Now it seems obvious to me on the reason of corporate prayer, but weirdly this verse 19 doesn’t seem to exist at the back of my mind even after reading the whole book of the bible once. I guess that’s why one has to keep doing their quiet time, for the bible is a book that needs to be taught and inspired by the Holy Spirit constantly.
Thank you Lord Jesus, for giving me another chance to live and I am truly grateful for this breath of life. I guess all I want to say to express God’s great love, His amazing grace and everlasting mercy shown to me throughout this whole treatment, to you all, would be like that of Paul:
“I pray that out of His glorious riches He may strengthen you with power through His Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.” (Ephesians 3:16-19)
God really do loves us so very much, that He send His one and only Son to die for our sins, to set us free from the clutches of sin and death. And that’s more than enough to thank God for all the days of our lives.
So now with my body stabilized I can joyfully say:
“THANK YOU GOD THAT THE FLOW TEST RESULT IS CLEAR FROM LEUKAEMIA CELLS!!! HALLELUJAH!!! PRAISE THE LORD!!”
*
Of course, though I say smooth sailing, the ship still need to hit some waves in the deep blue sea.
On the 11th of June, my platelet count that was steadily increasing at a nice pace suddenly dropped to a count of 72 from a count of 90 plus. The doctor suspected it to be a GVHD attack and ordered another blood test to be done in the evening for a recheck. Thank God the platelet count went back up to an acceptable margin that day, and with that the doctor didn’t worry much.
But on the 12th of June the platelet count once again plunge slightly and this time it did made the doctor quite worried till the point he ordered a bone marrow test to be done in the afternoon the same day, reason being he needs to know immediately whether the slight plunge is caused by the leukaemia cells or the GVHD attacks (as I have mentioned above that the rise and fall of the platelet counts are related to it).
Weirdly, this time around I wasn’t all that worried. Perhaps this time I was confident that my God will carry me through to the end, for He is the perfect Father, and His peace was upon me. And as children of Christ, I always remind myself, that whether good times or bad, we must trust in the Lord and lean not to our own understanding, for Jesus doeth all things well.
Ah, but sadly on the 12th of June it was my full-moon celebration from the day of my bone marrow transplant ha-ha! My mom bought those red eggs, cakes and snacks to celebrate this day with the doctor and nurses in the ward, while I am dozed off due to the general anaesthetic from the bone marrow procedure. Boohoo… at least I manage to get a slice of the cake. Oh yeah, remind me to write up about all the celebration here in the hospital ward haha, it’s really different here compared to
The next day on the 13th of June, the doctor immediately receive the bone marrow flow test from the lab, one of the quickest actually as normally it takes around three to four days. The urgency exist because the doctor needs to know whether to cut down the immunosuppressant to let the graft fight the leukaemia cells if it’s due to a relapse, or increase it if it’s due to the graft fighting me instead (come on graft, we are your friends!), it’s a crossroad of one way or another.
And once again, I breathe a sense of relief when the doctor says it’s a mild GVHD attack as the flow test shows that there are once again, zero leukaemia blast cells. All glory and thanks to our living God!
At first glance it seems like a disaster, an attack??!! Oh no!!!! But in reality, it is a good thing as it means that now I am “confirmed” to have a GVHD attack at least once. Previously in the last post I mentioned about the diarrhoea and that it may be a cause of a mild GVHD attack but it wasn’t a 100 percent sure thing to be honest. With this the doctor can safely say that the graft is quite active, and thus increases the chance of recovery for if the leukaemia cells do return, the graft will attack it and keep my body healthy. Now that’s what I call a blessing in disguise haha! It was confirmed even further after the doctor increased the steroids to suppress the graft and resulted in the liver function dropped (apparently the higher the liver function, the more active the GVHD is) and platelet count started to increase a little.
Through this, I can see that God actually answered all my prayers. Firstly that I get to go through the chemotherapy/radiotherapy without suffering any terrible side effects like vomiting and the nauseous feeling, mouth sores, fever (which I thought I could never avoid) and any infections; for the donor’s marrow to be able to be grafted; that I would not suffer any serious GVHD, but a mild one just to ensure that it’s active against the leukaemia cells; and finally for the body to be free from any leukaemia cells. It’s a miracle!!! All glory to God in the highest!
As of the time of writing though, my body is still trying to harmonize with the donor’s marrow and thus the platelet counts, liver function, glucose level and all are fluctuating. Thank God that as of now it is still acceptable and still counted as stable, but will need to pray continually that it will eventually reach to a equilibrium. From all the counts mentioned the platelet would be the most important, if that count could rise steadily, that would mean all is well and the doctor would let me be discharge out of here and being treated as an outpatient instead.
Oh, on my glucose level, it is rather scary to know that I am at a count so high that I need insulin injections to control it. Not that I am a sweet tooth, but the steroids that I am taking to control the GVHD is making my blood sugar level sky-rocket up, even to a level of 17.7 once. But after taking the insulin injection and sugar control pills it is able to drop to a low 3.4 and that made me all light-headed instead (though it does give me a chance to eat some Time-Out chocolate, yummy). Now the usual count is around 7 to 9 something, which is still quite high, but acceptable seeing how I am still fed with steroids… my body really is out of control ughh… At least on the liver function side, it is consider to be a really serious GVHD attack if it reaches a count of 500 plus, and as of right now it’s still under a count of 100, so that’s something less to worry too much about.
Hmm… now I understand the anime Naruto… though the kyuubi seems to give him incredible strength and power to defeat all his foes, yet it takes a lot of pain and effort just to control it or it will destroy him. Same goes with me, the graft helps me to defeat the leukaemia cells, yet it destroys me too if I don’t control and suppress it. Wait a minute; scrap this, what am I talking about??!
On the 20th of June, my dad, younger brother and maternal grand-parents came over to
I think the first thing they got really worried about (younger brother was laughing out loud though) was when they see my face bloated up like a round moon. Funny thing is that they did see this before… way during the first time I was diagnose with leukaemia haha (I guess some of you church youths saw it too back during Chinese New Year 2006, when I came out for like a second before I went back in to the comfort of my room to rest again), and even then the steroid level was way higher too apparently. Dad says I look like an alien hahaha! Though for a baby this steroid side effect makes them really chubby, seeing how my neighbouring baby friend looks like (from a photo through the nurse though, I never came out of the room since being admitted into it).
Hope they did enjoy their time here too besides just visiting me, otherwise I feel kind of guilty that they came all the way here just to see me. At least they did visit the night safari over here, haha, and it is the grand sale now you know.
Humans always want more.
For a person who earns 10 dollars a week, getting 100 dollars all a sudden is a gift from heaven;
Though for a person who earns 10,000 dollars a week, 100 dollars are just mere tips to those who serve at their tables.
Even while just playing a computer word game with my mom, mom also realized that when one has achieve a certain level of points, those measly 500 point words just doesn’t cut it anymore compared to the thousands that one can get, though it is through those measly points that one could only go to the next level initially.
Going through this whole trial really teaches me to enjoy the simple things in life that we normally take for granted, not once, but over and over again, seeing how the process keeps repeating itself for me, and learn to be content. Reminding myself yet again not to be overcome with greed and want more each and everyday, for God will always supply all our needs in the glorious riches of Christ Jesus our Lord.
Having to go through the side effects of chemotherapy almost every time, making me not being able to sleep well, eat well, doing my business normally; getting fatigue so easily and even the restriction of my daily movement due to various reasons… I guess nowadays I really thank God and feel very appreciative whenever I could yet again experience the comfort of doing these simple daily functions like a healthy person.
That was why on the 25th of June I was really glad when I was free from writing and reporting my input and output that I need to do daily to ensure that what I was eating and drinking was coherent with what I was passing out too. The doctor says that the food and drinks intake and output seems stable, which was why it can be stop. I tell you, it really is a relief. Imagine more than a month having to measure your urine in a urinal all the time and reporting what you ate always as the input and output cannot be too far apart in reading. And if it does they will inject some kind of drug to force you to urine, and somehow they do it at the worst possible moment of time haha --- they will inject me during the time where they will put the drug that will make me sleepy to reduce the allergy reaction during platelet or blood transfusion --- somehow sleepy and being all drugged out plus needing to use the bathroom don’t mix. But thankfully this time around they only use this “force urine” drug initially for a week or 2, and I thank God for that as it wasn’t too bad in a way compared to… last time… (Though this time around I did a lot of “estimate” on the urine when I pass motion… I mean, how can one not urine when he does his big business? And you expect him to measure it?)
I guess all I can say that it really is a pleasant joy… to use the bathroom like how a normal human does when one has to do his or her business and not having to use the urinal; and not to forget that you don’t need to crack your head every now and then and have someone keep pestering you what you had for breakfast, lunch and dinner all the time.
I also really thank God that this time around there were less intravenous drips to be put up and it wasn’t really needed constantly after a week or 2 if I remember. Compared to last time where I explained the Christmas tree look-a-like infusion pumps that I need to push around due to too many drips, God has been really gracious to me and protected me from any infections throughout this whole transplant treatment plus the donor’s marrow was quick to grow white cells to protect my body, thus the antibiotics were changed to oral rather quickly instead of having it intravenously. If I am correct, I only had fever once throughout this whole treatment, and that was due to the body not being able to adapt with the protein that I was receiving to suppress the donor’s marrow. Praise God for that! Not being link to any drips is another true joy of freedom I must say. Not only does it make you feel sick being link to drips, it makes you rather frustrated as you feel really trap, and once again going to the bathroom is a big issue I must say… pulling a whole machine along all the time.
As of the time of writing I thank God that I can do and enjoy most of the simple joys in life, though of course it still isn’t the same yet, as I still feel some mild hot flushes now and then when I sleep, my stomach seems to be a little haywire but it is getting better I guess (you can hear the sound of wind and water in it constantly like a loud speaker, and it’s never really solid), I seem to still get tired easily just by eating… but all in all, I still thank God that at least I am able to enjoy these functions more normally as each day passes by, compared to being bed-ridden or having my stomach hurting so bad that I can’t eat or sleep.
Alright, that’s all till now I guess, will try to write some other fun stuff that did happen over the days I am here in
Hope that you all will continue to pray for me, especially on the matter that the donor’s marrow will be able to harmonize with mine, and allow the blood platelets to rise up quickly, as truth to be told, I really want to be discharge from the hospital too. Oh, not to forget, give thanks to the Lord for all the great things He has done too! Always give thanks.
Then again, I guess in good times or bad, I’ll need to continue to trust in the Lord, for He knows best.
1 comment:
Haha, I'm not a doc yet (and won't be for err, 2.5 more years...wah, study until sien already but oh well, like that lah). :) What was the magnesium for? We're still praying for you, don't give up! Rebecca.
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