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’