Blessing in the midst of suffering...

In my previous post I forgot to mentioned that I was managed to be discharged from the hospital sometime ago, which was why the readmission. Really thank God for the privilege to be able to be outside the hospital environment, seeing and feeling something different for a change. 

As of today I also really thank God that everything seems more stable and calm. I also thank God that there aren’t any heavy IV drips that needs to be put in today, which gives me some time and comfort to figure out what is causing all the side effects that are happening to me. Truth to be told I am still having the side effects I mentioned in the previous post, but by the grace of God I am managing to cope with it this time. 

Also another thing to really thank and praise God for is that my blood count went up a little by itself today without any transfusion of any kind, will still need to continue to pray hard that it will continue to go up by itself steadily and not drop, and I know our God is faithful to hear our prayer. 

Another thing I need to mentioned is that though this whole ordeal was tough, and I know not how long it will last, but I thank God that it did lead me back to a certain realization about the power of God once again and the purpose He has for my life, praying to God that I won’t lose this focus again and again. 

Okay, that’s all for now, please continue to pray for me that the GVHD would be under control and the blood counts would go up so that I could be discharged, and most importantly I would do God’s will that He has for me.

In the need of prayer...

I got readmitted to the hospital because the counts weren't going as well as expected. 

Please pray really hard for me, that all my blood counts would be back up to normal, and that by the Lord's healing grace the GVHD would be under control.  

This is because this few days I am really suffering a lot of discomfort here, anymore longer and I don't think my body would be able to take it. I mean, this time it really is hard to bear I must admit, with all the weird pains, numbness, tingling feeling, anxiety that I cannot explain, it's making me really down and all I can say is I cannot bear it anymore longer. 

Still, I'll trust in the Lord, that He knows best, and He'll carry me through. For He's a loving Father.

 

Good day...

Woke up yesterday and today without any significant pains from the knees, and I must say:

“Thank God for this wonderful blessing!”

It really is a relief and a great joy to be able to sleep in comfort, being able to twist and turn around in your sleep and knowing that you will feel A-okay when you wake up in the morning instead of feeling like an old man with joint pains.

Thank God too, that after so many weeks, for once today I had solid stools. Not too sure that this would be just a one off event, but… at least it means that my gut is still capable of doing some normal functions. I thought it would never get back to normal.

My glucose level also seemed to plunge way low this time around till the point I was “forced” to eat sweet things today. Ah, the instability of my body! Not a bad thing though, and I actually thank God for that as I was able to indulge in some chocolates right before the sun was up, and that would mean less insulin injections to come too.

Platelet count on the other hand is still low, at a count of 21 in fact this morning. The doctor (and of course, me myself) is hoping that this will be the rock bottom and it will start to bounce back up from this point on. The doctor is being very optimistic as the white cell counts are starting to drop to an average level of 6-7 compared to a way high level of 14 and above that it usually was the past few weeks, meaning it is looking to be stabilizing. Then again, depending on the Lord almighty to let everything come into perfect harmony, for our Lord is a Lord of peace.

And yesterday I had a slight migraine that haunted me at night, how I fear those pains. Feeling like another one is coming out right now as I am typing too, praying to God that it doesn’t become more severe as time passes. Well, eating Panadol will always do the trick, but I try not to eat any more drugs that I am already taking, seems like I am intoxicating my body way too much already.

Ooo, and I finally managed to watch Spider-man 3 on HBO today. Spidey movies rocks out of all the other Marvel superheroes movies I must say. Okay, this seems super outdated, but during the release of the movie, and all the good movies I must say, I was in the hospital for treatment… now to catch up with Pirates of the Caribbean 3 and all the other 3s that was out… last year was it? (Somehow I always catch up with these movies a year or 2 later, haha!)

All in all, I give thanks for all the blessings that God has given me for the day, for our God knows our every need.

In a world of pain...

Having both your knees hurting really badly is unbearable…

… And the worst thing of all it was something that I could have avoided all along.

Well, you see, the doctor said that I need to do some light exercises in order to avoid muscle degradation due to the steroids I was receiving. The degradation was not a problem at the start, I could still walk normally and all, of course it was harder to do squads since some of my muscles had already degrade. To encourage me to exercise, the medical staff even borrowed a mini bicycle like thingy so that I would be able to do some cycling movement now and then in the comfort of my room.

But due to sheer madness (I think), I decided to go the extra mild and did more squads than usual and did some horse-stance jumping around the room, if light exercises are good, a heavy one should be better right??! Boy was I wrong, and this is one bad habit of mine that I could never learn when it comes to doing exercises --- I always overexert and thus hurt myself in the process for some weird reason.

With that now I suffer the fruits of my labour, it just hurts “oh so bad!” till the point that I wake up at night from the pain. Thank God that at least most of the time I suffer the most pain in the wee hours of the morning (when the acid builds up I think), and after a workout lesson from the physiotherapist, I manage to learn up some exercises that would be able to ease the pain off before noon comes. Though I am still trying to figure out why is it that sometimes only one knee hurts, other times both… position wise when I sleep at night perhaps?

That wasn’t all, due to my high glucose level and perhaps all the drugs and immunosuppressant that I am taking, my skin became rather thin and weak. And because of my knee pain, mom decided to put the tiger balm bandages on both knees and I must say it was a total relief for the pain on the knee cap, but somehow the medicines from the bandages manage to eat through my skin and formed a blister at my right knee. The scary thing though is that due to my high glucose level I think, the blister is taking quite some time to heal now. Ah, that’s what happens when you have a weak body… then again, thank God that it wasn’t both knees that got the blisters.

And pain wasn’t all the shocked that I received…

In fact on the same day I posted my previous post my platelet count dropped to a low count of 38, which got the doctor worried and immediately did a bone marrow tap procedure right that morning after he came to check up on me, though this time it was a much simpler procedure (something about not having to remove any small bone this time around; mom also took a video recording of it), in order to once again check if it’s due to the graft problem or leukaemia cells. And I thank the almighty God for His grace, as in the evening the doctor said once again it wasn’t caused by any leukaemia blast cells, and later on the flow test result showed that it was quite clear too.

But the platelet count kept dropping and by today as I am typing this post my count is at 25, another 5 less and I would definitely need a platelet transfusion. I must admit that it is making me all worried and a little frustrated… worried due to the platelet count being good and all at the start, rising at a pace faster than expected, now even with different kind of immunosuppressant put into the mix it just doesn’t want to go up; and frustrated due to being in the hospital for a little too long I guess, not being able to be discharged due to the platelet count.

Nevertheless, I am still trusting and hoping in the Lord that He knows best, for He’s the perfect Father. Never is He late, on the contrary, He does everything right on time. And as God’s word says in Isaiah 40:31~

“But those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.”

*

Alas, I am once again back to charting my input and output again, what a chore it is haha! The reason: my weight seems to be dropping constantly as each day pass, so they need to know what I am eating and drinking each day again and what I am passing out, as where I used to be 55 kg when I was healthy, it managed to drop to 46 kg over the pass few days, though thank God that as of today it went back up to 47 kg plus. The main reason for the drop of weight would be due to muscle wastage from the steroids, then in addition with my gut that couldn’t absorb nutrients so efficiently because of the damage from the radiotherapy/chemotherapy and perhaps due to the high glucose level, as the doctor says, when one have too much glucose in the system, it’s “hunger in the midst of plenty”. Besides all that, after a few bites of food I somehow get tired really easily and my stomach gets all bloated up, which prevents me from eating with ease the meal prepared before me. And when I mean tired, I get so fatigue that I just lie on bed and unable to move till the body somehow gets enough rest after half an hour or so. The trick to eating without feeling so tired is to actually eat in small portions over a period of time, but problem is that would make my meal cold, and that’s a problem seeing the meals that I take are mostly meat (can’t keep long cold). And since I try not to eat any carbohydrate meals, that cuts down a lot of my food selection that I can take over the day especially on snacks like cakes and biscuits.

Seeing that I am actually losing weight, and not gaining, it is logical that I eat more… right? Somehow mysteriously though the food that came each day from the hospital kitchen staff became smaller and smaller in portion. At first I rationalized that it could be due to the petrol price hike and like all other business in the world they reduce the size of the food too to keep up with the cost. Then later on the kitchen staff actually called up my room and said that I was changed to a diabetic diet… whoa kay… I know my sugar level is high, but it’s due to the drugs that I am receiving and not because I am a sweet tooth. But well, they are part of the hospital, and apparently they said it was advised by my doctor that’s why it was changed, so no arguing with them there.

Well, mom and I was confused, so when the doctor asked about my eating habits (which he always does everyday to ensure that everything is going well), we asked him about the reason why the food is getting smaller and why did it became a diabetic diet. The doctor himself was puzzled, first of all he said that I wasn’t considered to be diabetic as the high glucose level is due to drugs and I am not obese but underweight right now, I need more food, not less. The nursing staffs in the ward were also confused and puzzled too as they say they did not order the menu to be changed in anyway. In fact, everyone was looking at each other confused; no one knows how the order got changed at all haha! (Or perhaps no one wants to admit their wrong… who knows?)

I really thank God for yesterday though, as I manage to enjoy a wonderful dinner prepared before me with not much tiredness than I usually have. Need to thank my aunt for the food that she brought over, it sure was tasty.

Once again praying and depending on God that the platelet count would be able to rise up quickly, hoping that the blood test that will be done in the evening today will show a favourable result through God’s healing grace. And not to forget, my aching knees in the morning too, ouch~

~Thank God though, as I finished writing this, the pain from my knees are gone =)

Rejoice...

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 6^th 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 30^th 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 Malaysia while I was under the first chemotherapy treatment, but gotten a relapse and was send to GH, and I guess the treatment didn’t turn out well. Hoping that she did receive Christ went mom evangelise to her.

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 Singapore for consultation, the doctor said my prognosis for recovery was at 40 percent, that’s not even half for goodness sake! In addition to that, my transplant was done not under full remission due to the fact that the doctor thinks that my body would not be able to withstand anymore chemotherapy regimen, further reducing the chance of recovery. With all these thoughts I once again got really worried and anxious, and I remembered asking the doctor about the bone marrow tap procedure, whether such a thing could happen, that the leukaemia cells could still be stubbornly there.

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 7^th 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 Kingdom of God. But God hears the prayer of the pure in heart, the righteous and humble; whose heart has no malice, for their only focus is for the glory of Jesus Christ our Lord. I know I am still not up to that stage yet, as even now I realized there are times where I lose focus and once again pray for my own selfish gains, but all thanks to God for His love and grace, that He did answer my prayer to save me from the pits of death.

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 11^th 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 12^th 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 12^th 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 Malaysia.

The next day on the 13^th 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 20^th of June, my dad, younger brother and maternal grand-parents came over to Singapore to pay me a visit. Well, I must admit I sure was glad to see them all, it’s not often I get to see anybody else here and when dad comes he’ll cook some home cook meals, something for a change.

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 25^th 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 Singapore.

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.

All your base R belong to us...

This is just a log of the things that happened in May. I hope this update wouldn’t be too confusing, as when I wrote this I kept putting myself in between the present and past image/thoughts of myself.

17^th of May

I have heard from the doctor and nurses here that this treatment of radiotherapy plus chemotherapy plus transplant would most probably make me ill to the point that I may need to be fed intravenously. The main concern would be that the mouth linings degrade so much that it sores and bleed in which it would make me impossible to put food in my mouth as it is too painful. I guess the doctor and nurses here didn’t see how bad my mouth degrade prior to the relapse (till the point where I need to clean a lipstick of harden blood every morning and mouth linings coming off everyday), but if then I could still force myself to eat my daily meals, I thought this wouldn’t be a problem. Nevertheless, in my mind I still hold on to the idea that the mouth degradation that they mentioned is way worst than what I had experienced before in order to get myself ready if anything happens… hoping for the best but expecting the worst as they say.

With this hope, I thought I would never need to be fed intravenously at all during my battle against leukaemia; after all, if it’s the pain from the mouth I could always gulp down a few nutritious drinks to sustain myself during that period of time. But I guess when the pain and discomfort comes from the stomach, it was just another thing altogether and I had to give in and accept being fed intravenously. *chuckle~* The weird thing was that the day before I was feeling really well and all and could eat quite a lot (my gut felt quite uncomfortable for the days prior to this, but still bearable then), which I really thank God for as days like that don’t come around so often nowadays, but at night my stomach hurt so bad that I had trouble sleeping. And I thought it was suppose to be a sign for better things to come.

They call the food TBN, which I think it means “total body nutrition” (someone correct me if I am wrong, haha, just a wild guess). Due to the radiation and chemotherapy my gut seems to be, well, like what the doctor said, asleep or becoming lazy, and thus causing the food I eat to be processed and digested at a snail pace. Being so slow the bacteria’s in the stomach starts eating the food instead and form lots of gas, causing my stomach to hurt and feel really uncomfortable.

If you want to know how it feels, imagine this: your whole gut is filled with gas, but you can’t pass it out… at all… from either side. IT’S GONNA BLOW!!!

Yeah something like that.

The slowing of gut movement also caused diarrhoea, which was kind of a hassle as I am always connected to the drip, making trips to the bathroom much harder, but at least I thank God that it wasn’t the kind where you have no control over it.

So I stop eating due to the above reason and was fed intravenously. What was my first impression being fed by TBN?

“Hey this isn’t so bad at all, now I am free from the stress of eating!”

I say “stress” because it takes quite a lot of strength for me to eat apparently and it’s more of a chore with my body being “not” so normal. Being fed with this TBN, I feel more relaxed and free as the responsibility to “need” to eat is gone. Now not only does my gut can rest from digesting stuff, my mouth lining wouldn’t get damage either as I don’t put any food in it, and the best thing of all would be that I somehow never felt hungry at all (though once in awhile KFC’s advertisement will tempt me and that heavenly food documentary on Discovery Channel made me build up quite an appetite--- for that moment at least --- for I know if I do eat I am going to have to pay the price of a really uncomfortable stomach yet again).

18^th of May till 23^rd of May

Praise the Lord! For though there were some sores starting to form at the back of my mouth and throat, which hurts a little comparing to what I have gone through, those sores didn’t became worst and on the contrary subsided in a few days. I really thank God for His grace and mercy, for allowing me to get treatment here in Singapore and have access to a drug that could protect my linings, and even so the doctor says that it may turn out disastrous but yet God delivered me from this pain.

My diarrhoea also subsided for the time being and became soft stools instead, it still was troublesome in a way as I needed to use the bathroom quite often to do my business, but well at least I am not losing fluids so easily and the doctor says it isn’t something to be of concern of due to my weak gut, haha.

24^th of May

It has been about a week since I survived just eating “space food” (which was what my mom and I call the TBN as it was white in colour, like a bag of milk, though taste-wise I have no idea), so I decided to try and eat some food to enable the gut to be able to be at least be a little active and start functioning again.

Well, took some Locker’s biscuit and a cup of tea… I think… and all was well…

…till evening came.

I had uncontrollable diarrhoea, not like those mentioned above, but the kind where if you don’t go now, someone’s going to need to do the dirty job (No, not Dirty Jobs with Mike Rowe in Discovery). It was also different in a way that I had minor cramps from my stomach as I pass it out, the stools became a really scary dark brown in colour, and I was really tired after the whole event ended. And I went twice.

At first I thought it was due to the fact that I once again started to eat and my stomach was not use to it, but from the doctor’s perspective it could be a graft versus host disease (GVHD) on my gut, which caused this diarrhoea to be different. Not leaving anything to chance, the doctor decided to put me on steroids to control the GVHD, in addition to the normal anti-diarrhoea pills.

Though this seems like a terrible thing, I was actually grateful to God and hoping that it IS a GVHD. As I have mentioned before, it’s better to have an attack to ensure that the donor’s marrow actually does its job to fight off the leukaemia cells in my body, and not be a gentleman that would just let these bad cells walk pass the door and cause the whole problem yet again. And if it was a GVHD, at least I am not suffering a weird attack of diarrhoea in vain. Better go through a GVHD with something mild like diarrhoea than a kidney or liver failure which is way too drastic even for me to imagine.

25^th of May and 26^th of May

Thank God that the uncontrollable diarrhoea didn’t come again after that day with all the drugs administered, though I couldn’t pass any motion at all after that since I was taking the anti-diarrhoea pills.

The doctor says that it is good indicator that it is a mild GVHD attack as the diarrhoea did not came back after steroids was administered, which I pray to God that it really is, as it gives me a higher chance of recovery.

On the 26^th I was also starting to feel a pulsing pain from the pelvic bone (the place where my bone marrow is normally drew out). But the pain being bearable, I just concluded that it was just a case of the steroids side effects and didn’t bother much of it, as most of the time while taking steroids some part of my body bounds to get aches.

Oh yeah, and on this day too I also had my blood drawn for a test to check the percentage of the donor’s white cells compared to mine in my body, since the white cell count in my body was at a desirable level to take the test, around 4 I think. Was praying hard that the results would be 100 percent of that of the donor’s marrow, for then it’ll be a better result for recovery, which would be explained later.

27^th of May

The pulsing pain from the pelvic bone doesn’t seem to get better but worst, and that’s when I asked the doctor for help. The doctor told me that it was normal (phew, breath a sigh of relief), and that it was due to the white cells expanding in the marrow at a really quick rate which causes the pain. I am not one who normally submits to taking pain killers, but this time it was that painful. Nevertheless, always trying to stand to my anti-painkiller stand, I decided to start of with something mild – Panadol – to relieve the pain.

Weapon doesn’t seem to have an effect.

So I took a stronger one – Panadin (or once again… something like that, pardon my blurness)

No effect.

And finally I took some weird looking pill which seems to be quite a high grade painkiller.

At least some effect… but my pelvic bone could still feel the pulsing pain.

Guess I have to bear with it.

On this day I also finally manage to do my big business, though it seems rather insignificant to a normal human being, yet it’s a great deal here as finally it’s not the diarrhoea watery kind, but just well… soft muddy kind? The colour changed from a scary dark brown to a normal shade of brownish, which I do hope is the normal colour of a good stool… hmm… why am I talking about this anyway. Some parts of my body were also starting to recover too, which was a good sign that the body wasn’t going to degrade any further.

Ah, and I guess I didn’t explained why the white cell counts were going up so fast. Apparently because the donor’s marrow didn’t go through the radiotherapy and chemotherapy treatment, it grows at a normal rate when it successfully grafts onto my body (which I thank God for that, as if it didn’t even grafted I wouldn’t even be writing anything about this right now as there are no white cells to talk about), compared to my other tissues that were stressed and damage by the treatment. I was like: “yeah horh, how come I didn’t think of that before.” In a way the donor’s marrow got “jump-started”, plus the Neupogen that they give daily to spur the white cell growth in my body, it shot up pretty quick. And this is another thing that I am very grateful to our Lord Jesus Christ, as in my mind I thought one needed at least like 3 months for one to be able to recover their white cells after the transplant, and it was not so. All glory to God!

28^th of May

The pulsing pain still didn’t stop and that leads me to giving up my macho stand on painkillers and just cut to the chase, asking them for the strongest they got. At least this time it did manage to quell the pain after eating the pill, but yet the pulsing feeling kept haunting me… as if the pain is going to jump and surprise me anytime.

And today I finally was also able to stop eating the “space food” since I was able to eat once again on my own and my gut was able to process and digest food without any pain, though it still was a little sluggish, which means more soft muddy stools to come… and which also means more trips to the toilet. Ah, the horror for a lazy person!

But I guess all these discomfort and pain seems really petty when one receives a really good news~! I’ve got the result from the doctor that the donor’s marrow has taken full control inside the body, a 100 percent result. And there I was thinking that the last thing I could ever get 100 percent for was my math’s exam during form 3, and even then it wasn’t by my power but God’s too (I tembak 2 questions right, ah, and the truth is revealed).

The significance of this? It means that the white cells in my body consist of entirely the donor’s and not even a single of my own, which in a way could be deduced that the leukaemia cells are no longer in the body, since those count as my own.

Hallelujah!!! Praise the Lord!!!

I guess it’s only a deduction, but nevertheless, if this wasn’t at 100 percent the next few test wouldn’t be that much of a pretty picture. The next test would be the bone marrow tap, and from there the doctor would be able to verify if I am in complete remission or not. I am still praying hard that my whole body will be free from this disease in the power and mighty name of Jesus Christ our Lord, for it is only through Him, that I can only be completely healed now.

And with that, the donor’s marrow says:

“All your base R belong to us’

Day 3...

Hmm…

Things aren’t going easily as first of all, sleeping seems to be a little of a problem with the constant heating up of the body from either the radiotherapy/chemotherapy side effects or the control drug that I am taking every day (at least there isn’t the anxiety that comes along with it with the change of the drug that I took --- that feeling can make you go crazy, you can’t even make a single decision at all).

Eating is also becoming a problem as in addition to my not so good appetite, my mouth lining seems to be degrading too and apparently it’s only going to get worst.

And I don’t know what’s causing it, but my head seems to get dizzy real easily. And my stomach feels nauseous at the worst possible moment --- when I want to eat.

I guess all I can say now is that my body is really really tired. It doesn’t come as a surprise as the radiotherapy and chemotherapy treatment that was given is strong enough to kill my own marrow.

Then again, it is… in a way easier than I have imagined. I remember clearly what I have read and it says after the transplant it makes some people bedridden for like a week or two and need to be fed through drips. Well, at least now I still can eat with my own mouth and wake up and stay awake without feeling any fatigue for at least an hour plus. And I also read that one would be prone to infection for at least like 3 months, but the doctor said that around 10-14 days the donor’s white cell will start to be produced in my body and that eliminates it. Though of course, with that comes along with it the graft versus host disease, but let’s leave that for later.

So, in a way I thank God that it isn’t as horrific as I have imagined. Staying in the same room for 3 months and being haunted by almost any infection will make anyone insane I guess.

Counting from the day of my transplant this will be day 3, with day 0 being the day of my transplant. The condition of my mouth degrading and all will only worsen till day 6 and after that it will start to get better with the donor’s marrow kicking into high gear; but with the donor’s marrow active that causes the graft versus host disease to start too. Really need to pray to God on this as only now He can do the things we can’t control at all, which is to allow my body to sustain and not degrade, especially my mouth lining till pass day 6. And after that I will need to pray that God will keep me from any harm, especially from the graft versus host disease, that it will be just a mild one to be in favour with the treatment.

Nothing left to do but to hope in the Lord, who knows our every need and is faithful.