Sunday, May 27, 2007

Mission Accomplish~

I didn’t know that saying goodbye to something that I dread wasn’t as easy as I thought.

Not that I am going to miss chemotherapy, as it isn’t really something anyone would want to look forward and receive it with open arms, but the whole experience of going through it for one and a half years was some wild journey. And it’s has all ended. Having a mix of feelings right now as I am typing this, it seems… unreal in a sense that the chemotherapy has come to an end; that the super long list of chemotherapies that I need to go through for weeks and weeks was completed just like that, and back then I was like looking at my protocol, crossing out each treatment I’ve gone through and wondering: “Man, this is going to take forever… when will it ever end?”

Got home from the hospital 2 days ago and though the homecoming was delayed for two hours because of a total mix up with the insurance company and the hospital--- both relaying wrong information to one another--- I didn’t really bother much. Okay, okay, I lied… even though it was the last day I still got frustrated from waiting and changed my clothes even though I was still feeling quite weak to venture outside my room and to the bill department to see what was taking so long… thought my mom was chit-chatting with her aunts so long to pay her bills, tsk tsk.

Really need to thank God that this time around the treatment was very much bearable, didn’t throw up once and the days seem to pass by rather quickly, except for Monday I guess when I had my Lamba Puncture and needed to stay still for like 5 hours on the bed, and that’s when time moved really slowly, but who loves Mondays anyway. Had 2 chemo’s this time around, a 2 hours daily chemo (Ara-C), and for the first 3 days a 3 hour chemo (didn’t know what it’s called, but apparently it breaks down the DNA of cells or some sort like that, message me if you really want to know). I was rather surprised or terrified as you can say… that the chemo was able to be administered though the period of time was really out of place. I took my first chemo at 6 something in the evening for the first day, but as my mom thought that there may be a chance that I would want to go home on one of the days and also in order that on Friday I wouldn’t need to stay for another day since the chemo will end by midnight, she asked the doctor if it could be made earlier. The doctor said that a time difference between a ‘few’ hours was okay and asked the nurse to plan accordingly. So the next day the chemo started at 3-4 in the evening, which was fine I thought. But on the third day it suddenly started at 11 in the morning and the nurse who put the chemo on me didn’t even spare a single second for my anti-nausea medicine to settle down. Normally they wait around 30 minutes for it but she just put in the chemo straight after that. I would yell if it wasn’t for the fact that this chemo treatment was bearable… and I thought those horrible nurses only appear at night or Saturdays and Sundays. Thank God that nothing terrible happened to me because of that.

Nothing much to mention I guess for the whole five days when I was in the hospital. I spend most of my sunlight moments sleeping, while watching Disney’s series at midnight (like Lizzie McGuire, Even Steven’s, I find it way more interesting compared to the B-grade movies on Star Movies which they normally show during midnight). When I was back at home, mom even complimented me for being able to hibernate in the hospital: only eating one main meal which was dinner, and sleeping through everything else. At first I thought it was because of the loss of appetite and tiredness from the chemotherapy, but on Friday when I got home, my appetite was back to normal and though my stamina wasn’t at its best, I didn’t need to sleep the whole day like in the hospital, proving it wrong. I realized the hospital room plus the thought of knowing that I am going to get a dose of chemotherapy and certain food and smells (realized this because certain food gives me my appetite back, while others completely destroy it, problem is, I don’t know which is which as it changes) made me nausea even before I begin any chemo treatment at all, meaning that the whole thing was caused mentally, but it isn’t something where I can concentrate and chant: “the hospital is a happy place” a million times to make it go away.

Hmm… it’s going to be disgusting but I guess I’ll just write it down for memory sake… I guess it’ll be a long time before I can last 5 days NOT bathing. I didn’t have the heart to tell one of the nurses that was doing their routine check up that my hair wasn’t purposely oiled, but it was “naturally” oiled. Yeah, imagine how oily it has become when one doesn’t bath. And there she was complimenting about how great my hair has grown back.

Oh, and before I forgot, a really big thank you to the student nurse that came visit me for more than once while I was in the hospital (I guess you know who you are), though you didn’t had practical duty at the hospital then. It breaks the mundane cycle of sleep, watch TV, and sleep again in the hospital. I seldom get visitors, and for those who are wondering why, a patient undergoing chemotherapy is really hard to get visited by friends as most of the time cell counts are low, and even if that isn’t the case I may need time to recover from the side effects that I have received and wouldn’t want to meet anyone then (it isn’t pleasant to talk and feeling like vomiting at the same time). And I guess it doesn’t seem polite to “ask” people to come visit you, as that seems forced in way.

Most importantly I need to give thanks to God for all He’s done. For helping me to overcome the impossible, and teaching me that going through life isn’t so easy. It isn’t always “the other person” who would need to go through the difficulties. Heh… and before that the hardest thing I need to go through was exams. But for exams if you fail, you get devastated… of course… but you still live through it and can retry another time. But the exam of life isn’t something that can be retaken.

There are so many things that I’ve learned through this experience, and a million more reasons to thank God for it, but I’ll just write one for now. One important thing I learned through this experience was the peace of God. I realized that the peace of God isn’t something where panels of bright lights appear and suddenly all the pains go away; all troubles disappear; all worries gone in a snap with God’s finger (though He could do that if He wants to).Now I realized that the peace of God is this: Even IN pain, troubles and tons of worries, you know there isn’t anything to be afraid of, for you know that God is in control, and you can have rest, sweet rest knowing that His arm is carrying you through all the way without a doubt. I guess it’s best describe by Pastor Chuah during one of his sermons: The peace of God is like a bird, sleeping soundly under the shelter of a rock, though heavy storms with loud thunders roaring and flashes of lightning are around it, the bird could still rest peacefully under the solid rock. And it was this peace that made me go through my toughest times, as I know full well that I can give all my burdens to God, for He wasn’t going to abandon me.

I would really want to jump and celebrate, maybe fire a few fireworks while I am at it and party all night but having to eat the pills for 1 and a half years time (the main thing I am dreading right now) after this, and going back for Lamba punctures every now and then (not too bad this one) to decrease the chances of a relapse seems to dim the celebration mode. Though, I won’t complain much as I am still very glad that I don’t need to drip in any chemo anymore or having the need to stay really long periods of time in the hospital.

So, in short (just the highlights):


-1 year 5 months plus (started on December 22nd, 2005 till May 25th 2007)
-12 chemotherapy treatment (not including the others, if included it’ll 18 treatments)
-50 plus blood drawn from the arm (not including those from chemo-pod)
-10 Lamba puncture procedure (and counting… still need to go for it)
-4 times hair dropped and grown back again
-3 painful mouth ulcers (one caused from bacteria, while the other 2 was because the cell lining couldn’t recover fast enough)
- 2 anal infection
- 1 case of herpes zoster (or the heavier version of chicken pox if you’re wondering)
- Packs of blood and platelet transfusions
- And being nausea for all the treatments except the first one and the one where I didn’t need to take any chemotherapy.

I can finally say to myself: Mission Accomplish!

*pats myself at the back*

~Hmm… guess I’ll be writing what I’ve learned and felt through this whole experience every now and then whenever I could think of it. Just couldn’t fit every single thing that is gushing through my mind right now.

Thursday, May 17, 2007

Negotiation at the hospital...

“Eh, you think this is a market ah, ha-ha!” says the nurse.

Yeah, went to the doctor for a check up today, thank God once again that the counts were all normal, and that I didn’t need to get admitted to the hospital on that day itself.

Well, not that it was part of the doctor’s plan in scheduling me to get admitted next week, but I managed to get out of it through some negotiations, well like those in the markets.

“You give me FREE 20, only I buy lah…”
“Harh?? Free 20 cannot lah…”
“Aiyah, how about 10 leh?”
“Eh, I rugi, but can also lah.”

Which in my mind I don’t think they are going to rugi unless they are doing a stock clearance.

Anyway, after discussing with the doctor I managed to persuade him to only let me get admitted on Monday, which I really thank God for as this at least gives me some time to relax and enjoy eating for another 4 more days, free from feeling nauseous and all I must add, before the next unknown side effect pops up when I undergo chemotherapy for 5 days again.

And since I was going to be staying for at least 5 days, getting admitted on Monday is another good thing as I totally dread the nurses’ service on Saturday and Sundays. Well, unless I got lucky and have the regular senior nurses working on that day (senior doesn’t mean those grandma’s mind you), I am going to have to be fully alert in making sure that the nurses don’t do anything life threatening to me and making sure that they actually do things properly. I guess that’s what happens when you have too many patients and too little nurses, all which have taken leave on that day I guess. Man… that kind of reminds me of some of the horrors at night, but let’s leave that for another day.

Bah~! Though I did succeed in postponing the days, I didn’t successfully manage to negotiate with the doctor to reduce the amount of pills from the insane number of 12 pills a week. He was saying that my counts were alright and there wasn’t any need to alter it. Arghhh… I am suffering from eating the pills!!! Hope he actually understands that before I need to retake the pills again.

Hmm… though I am really dreading to get admitted to the hospital this time around, but since it is the last one, might as well get over it so I don’t need to think about all that anymore. The doctor says it isn’t going to be too heavy either and actually allowed me to go home anytime between the stay if I wanted to, which was reassuring I must say. Praying to God that all goes well, don’t want anything to happen on my last long stay in the hospital, as even though the doctor may say that this treatment is going to be light, I can’t even remember how many ‘light’ treatment’s I have came out feeling that the hard ones were easier to go through instead.

Oh and yeah, got to thank God that my elder brother didn’t give in to my stubbornness to NOT buy any warranty for the Dell computer. I remembered back then I was like: “What??!! Waste so much money on warranty! I don’t buy can save another thousand lorh, just need to take care of the computer properly only mah…” Yeah right, come to think about it, I don’t think there was once any of my computer survived 3 years without anything happening to it. Really got to give credit to my elder brother as with the 3 years warranty I didn’t need to pay a single cent for the replacement motherboard and the service of repairing it.

I was rather amazed by Dell’s service though; I called Dell service hotline on Tuesday (took me lots of guts and scolding from my brother and mother to do it as I am a total chicken when talking to ‘strangers’---what if they kidnap you?), did all the check up and pinpointed it to be the motherboard’s problem, and the technician told me on the phone they guarantee that by tomorrow morning they will come over and pick it up for repairs or you can call the hotline again to speed them up (reminds me of how one speeds up Streamyx to install broadband service to you). The next morning (Wednesday), while trying to ignore the ringing of my cellphone in order to sleep, in which after a missed call only did I realized it could be the Dell technician, I answered him that my motherboard could have been destroyed. Well I actually said: “my motherboard fried…” in which he just replied: “harh??!!”, so yeah saying “destroyed” would simplify things. The tech dude said that he would come in the morning… well, as Malaysian’s when we say “would come” and then it was already 10:30 in the morning, chances were that that morning would only come tomorrow or the day after next, after next, after next… so I just went for my checkup without waiting.

Voila, while waiting to enter the doctor’s room the Dell tech dude called and said that the computer was in working order, the motherboard was replaced, a full system check was done… heck, he even ask me what other repairs should I give him to do on my computer (should have asked him to upgrade it if he have the parts, tsk tsk). What surprised me was that instead of being the typical computer technicians that brings the CPU back and slowly take a week to sort of your problem, they actually took the initiative to bring the parts, which in this case was the motherboard, though there could be a huge chance that a complete computer noob (i.e.: me) told them some wrong information. Ha-ha, all in all, was really glad that the computer didn’t need to get admitted anywhere, and was repaired at home and really fast I might add.

Well, I do have a complain though: The technician only arrived at 12:20 pm and not in the morning that he promised.

*A punch comes out from nowhere and punches the author--- “you ungrateful brat!”*

Monday, May 14, 2007

Strike by lightning...

Oh Yeah! Finally today I can stop eating those horror pills and not worry of any crazy side effects that would happen after eating it!

I woke up thinking that it’s going to be a perfect day for me. The weather wasn’t so hot like it used to nowadays, I wasn’t feeling the nauseous feeling I had few days ago, and I even got the 218.208.XXX.XXX IP in one try woo hoo!!!!

For those who are wondering what’s to be so happy in just getting some random numbers, as any IP given also allows you to surf the internet, let me tell you this: Yeah, all given IP from STREAMYX (got to emphasis this!) allows you to surf the net, but not all of them allows you to connect it at a fast connection! Though you are using the “high speed” broadband of Streamyx, have you ever noticed that there are times when you want to beat up the monitor and throw your keyboards on the ground and smash it because it’s takes like 5 minutes just to open up your e-mail or maybe 1 hour to load Masked Riders Part 1 on YouTube?? It makes you think that maybe taking out your old noisy 56k modem from the past and reusing it would be a much better alternative compared to paying Streamyx for that lousy SUPER slow connection. Well, that’s because certain IP have a really slow connection to overseas sites, and more often that not, you’re going to get it, which is normally the 219.95.XXX.XXX. It’s really dumb, but there are times when I just sit there for hours reconnecting my broadband modem till I get that IP I just stated so I can play online games smoothly (frustratingly, my cousin just few doors away can always get those super good and fast IP connections WITHOUT fail, hmm, some trick perhaps?). Thank God that for the past month I manage to find the time schedule to actually get it after at least 5 tries. Otherwise I am just going to stop subscribing to Streamyx as with that kind of speed is just not even worth it. Best Broadband Company for online games and web surfing in Malaysia… yeah right…

Then after lunch and an hour of gaming later it started to rain, a good thing since it cools down the temperature, but if it starts to have lightning… arghhh! That means I have to close the modem and lose that IP that I’ve got. At first I didn’t off it because I thought the lightning would eventually subside and I didn’t want to reconnect all day to get the IP again, but the lightning didn’t get better at all. Well, better off it than letting it get strike, as that would be even worst… no internet at all. So, after offing everything and switching off the plugs I decided to go and take advantage of the cool breeze by sleeping.

Barooom!!! (I hope this gives the impression of the sound of a really loud thunder) And suddenly the power of the whole house was gone, guess a lightning has struck my house, or perhaps somewhere near. Phew… I thought to myself, I have switched off all the computer plugs, what’s the worst that could happen? I thank God and went back to sleep.

Half way sleeping I heard my younger brother mumbling about something but I didn’t care… which turns out to be something really terrible…

Both my computers couldn’t be turned on.

What the…

How come I off the entire switch also still can strike dead my comps…?

Well, to be honest this time around I didn’t have the end of the world syndrome like how I had when my old comp blew up. Maybe I started to learn what’s important in life… or perhaps through God’s grace my laptop wasn’t blown up so I could still use the internet woo hoo! Though now I am starting to doubt that as my laptop seems to be going a little haywire compared to normal.

The funny thing is, only both my CPUs got blown while everything else was still in order: the monitors, modem, router were all still functioning. Praying to God that it’s just the power box that blown as if it’s the motherboard I’ll go crazy then. At least this time around my parents didn’t scold the heck out of me as I did off the switches, or maybe the lightning strike it dead during the time I was hesitating and before the whole house power trip? If it is so then I am sooooo in trouble.

Ah, guess it’s time to take out my dust covered Playstation 2 and replay some of the old RPGs that I have been too lazy to play. And I guess this event also encourages me to go out to ‘lepak’ too, looking at how I’ve stop eating the pills also.

Or maybe I should just take this time and go finish reading the book of Jeremiah since it’s only the last two chapters.

Though I wouldn’t say that this day was in any way perfect, I would still thank God as having to not eat the pill and feeling so relax because of that is really nothing more than I could have asked for.

Sunday, May 13, 2007

64 pills later...

Gosh… I can’t believe that it already has been near to a month since I last updated. Didn’t realized it at all as time seems to move really slowly at times, and really fast when I am enjoying myself.

After my birthday, which was a Monday, I started eating the pills that I oh-so-dread, and it did not turn out too well as on the first day itself I puked from the 12 pills I was taking. Was eating the pills 2 at a time and I guess the over dosage of water drank plus the horrific thought of what it can do to me for the next few days made me nauseous and vomited not long after I gulp in my last 2 pills. Thank God that it wasn’t the kind where you throw out every junk from your stomach but it was just the liquid that came out, as I needed to do the horrendous task of searching through it to make sure I didn’t vomited the pills out in anyway. Though it still troubles me as me thinks the pills have dissolved into the water, but NO WAY was I going to retake the pills for that week. So I just presumed that the pills did not come out… and that the pills have a plus minus error like that of the answers from our graph’s calculations, so minus a few dosage wouldn’t matter, just to comfort myself.

But for those who are starting to think: “Ju Liang, you shouldn’t do that, what if it jeopardizes your treatment??!!” Take heart, as first of all I have no idea how many ‘dosage’ of pills I have vomited out, and I, without the proper apparatus at home can’t measure it through the pile of liquid in front me (and I don’t think anyone would want to do that anyway). And if I take anymore of what I have consume it may jeopardize my life instead as the pills are highly toxic.

Of course I started to feel groggy and nauseous but on that Thursday it became unbearable. I couldn’t move out of bed as it makes me feel seasick, even though I was firmly on land it seems like I was in a rocking boat with tidal waves all around me, and the only way to make me feel not too sick was to lie down in bed. But that wasn’t helping too much either. It kinds of reminds me about the time where I got that serious headache and dizziness from the chemotherapy during World Cup last year, only difference is… I have zero appetite at night as I was sure that one bite of anything will definitely make me puke. Thank God once again that I could actually feel hungry for lunch, therefore not depriving me of any nutrition at all.

Tried calling the doctor, but he was away at Lisbon for a doctor’s meeting, so I have no idea what I should do. Thinking that it may be a one off thingy I decided to give a few days for it to go off. But after 4 days I realized that if it continued I was going to die from the suffering, and followed my mom’s decision to see the doctor the next day instead of being macho. I even decided to stop eating the daily pills on my on accord.

Well, despite the doctor being in Lisbon there’s still the substitute doctor, who was a lung specialist. Huh? What does lungs have anything to do with leukemia?? Well, apparently since this doctor also looks at lung cancer patients, chemotherapy isn’t a problem to him. So I went to him on Monday, told him my situation, and explained to him that I didn’t eat the pills because I couldn’t take it anymore. At first I thought I was going to see the doctor shake his head in dismay, and start lecturing me on why I stopped eating the pills without any doctor’s order or anything like that. But the ‘botak’ doctor just smiled and said: “You did the right thing.” Woah! I was really relieved then. According to him, the 12 pills that I was taking were highly toxic, and he was actually starting to wonder why my doctor prescribed me that many pills per week, in which I blurry said “…because that’s what I take most of the time during the other treatments.”

He did an examination on me and realized that nothing was amiss, so it could be an overdosed. One thing I did notice though, that this doctor was “pro” at taking blood. I was looking away a sec, and when I turn around I found out he draw one whole tube of blood from me, without me noticing much of anything. Normally the amount of blood taken by the nurse at my usual doctor was only like 5-10% of the tube, and there were times when she couldn’t draw the blood that I must suffer the pain of her re-poking to find the vein, and it took so long of and ordeal just to get that small amount of blood.

At the end of the check-up, and after consulting with my doctor through the phone, the botak doctor prescribed me some anti-vomiting pills and asked me to stop eating the pills till my main doctor comes back on Wednesday, where he will have a look at it himself. Well, I didn’t touch the anti-vomiting pills at all as back then I was too afraid to eat any pills anymore. And thankfully, I was starting to feel better once I stopped eating the pills, and for once I can say it wasn’t my mind playing tricks on me.

Time suddenly just speed up when I was feeling much better and it was the day for the check-up. The doctor said that the pills couldn’t be stopped as it is very important in the protocol and must be retaken on that day itself (boy I wish I didn’t heard that), but in order to know which pills were the ones that was causing the overdose, the doctor asked me to eat the 12 pills only next week, while I cut down to one pill daily instead of the usual 2. Well, thank God again that the doctor actually gave me a day’s grace before eating the pills. I wanted that break so I could watch the Champions League match that night, ha-ha, before feeling sick all over again. Though now that I think about it, I think I never watched any match then, or perhaps completely watched any match as I was still weak from the over dosage.

Surprisingly, cutting short by one pill could make a world of difference. Despite the fact that I still have that “want to puke” thought whenever I just think about the pills, I couldn’t feel much of the nauseous effect after taking it, and was able to go on and do whatever I was doing. Really thank God for His grace and mercy as I cannot imagine how am I going to go through another 2 weeks of that uber-suffering. Especially when it was only just the week before where I almost felt like dying just by eating pills, and there I was eating the same pills again.

I couldn’t say much about the 12 pills though, as after taking that it makes me quite nauseous and really tired. So tired that it makes me want to sleep right after I have taken those pills, but I learnt the hard way that if I actually slept immediately I would suffer twice as hard when I awake during midnight. And those pills would gave me a night or two of constant dreams (around 5 per sleep), not those sweet dreams, but dreams about things that bugs you the most (I’ll leave that to your own imagination). The frustration makes you all worked up that you felt like you haven’t slept at all. Guess when I go back for the next check-up with the doctor I got to go negotiate about reducing the amount of pills from 12.

The 3 weeks of pill eating became to 4 weeks because of the delay. At first I thought that it was a set 3 weeks in which I eat the pills, and what was gone… was gone and didn’t need to replace the days I missed eating the pills. But when I called the doctor just last week I found out that I had to eat the 12 pills once each three weeks. Thus, since I skipped one of the weeks I got to replace it. And once I have started eating the 12 pills I’ve got to eat the daily pills for a whole week without fail…ughhh… not what I have expected and that got me really frustrated.

Ah, but one comforting thing would be that the pill eating would be done by today night, just one more to go. Not feeling too good though as I am writing this for I am feeling quite nauseous… hmm something I ate perhaps? Praying hard to God that the doctor would give me at least one weeks break before the grand finale, for I really need a rest before the next one. Well, if it doesn’t goes as planned, I guess it just makes the final treatment ends faster, which is also a good thing, better to just get over it then fret about it. Hoping the final one isn’t too hard to bear too.

Oh yeah, and guess when morning comes in a few hours time I got to wish mom “Happy Mother’s Day”. Don’t really know how to thank her, especially since she have sacrificed so much time taking care of me during the time I was in the hospital, and even besides that she has selflessly taken care of me all the years.

So, if you somehow manage to read this post on Sunday and forgotten to wish your mom that, you better do it now!