Wednesday, June 20, 2007

It's not over yet...


Prepare for a really long read; reading it in parts is advisable; not for the easily distracted or those who just hate reading.

Phew… what a week…

I was initially planning what to write 2 weeks and a half ago and was deciding to use the title called “Hair Issues” for that post, since I wanted to thank God that even though hairs from other parts of my body such as my moustache were dropping, the hair on my head didn’t drop off from the last chemotherapy. I also wanted to proudly announce that I had my first “real” hair cut, since chemotherapy, at my aunt’s place to trim my hair that was growing out of place (well before that it was only shaving due to the fact that my hair was dropping off) . I was worrying about that as I have totally no idea what this one can do since I haven’t had it before. Heh, I even thought about the advantages of having my moustache drop off so easily with this weird advertisement in my mind:

Some guy: OH NO! My date is arriving in 1 minute and I forgotten to shave!!!

Narrator: Ever had this problem? Fear not as with chemo-hair-remover, you can instantly take away your moustache by just wiping it off your face (guy in advertisement swipe the moustache off and his date arrives just in time, with a big smile he walks off) Yes! Just by wiping it off!! What’s more, you will never need to worry about hurting yourself while shaving again! Please note, side effects include hair loss from all parts of the body.

And since my hair didn’t fell off, I was thinking of explaining about my thoughts on shaving my hair just once more in that post… till I get old and it drops off I guess… for the sake of remembering what I went through, though then I was hesitant to do so.

Hmm… what else, oh… and to write about how little red dots were appearing everywhere on my body. If it was rashes I wouldn’t be in such a panic, but the “dots” weren’t on the skin, it was under it. And that could only mean internal bleeding. The fact that when I scratched my left arm one night and bright red patches appeared in the morning the next day, plus all the other red dots that were starting to show up got me worried. Though I tried to stay positive and say it wasn’t internal bleeding as it wasn’t like last time: the skin became dark brown in color when I scratched it.

Well, as you can see that article wasn’t written as I became lazy from all the thinking I have done and decided to push it to the next day, well I do have most of the days free anyway since I am not schooling or doing any work as of now. Ah, but I didn’t know what was about to come…

The next day was Monday, and it was time for my check up with the doctor. I was dreading to go there as it would mean the start of my pill eating days till one and half years later, feeling nauseous whenever I take the 12 pills every week. I know there’s no way I can delay it if my blood count were all normal, especially since the check-up was suppose to be earlier on Friday, but it got delayed because the doctor had to go for his church camp then. So, I went in the clinic, doctor was talking about his experience in the church camp and he wrote a prescription on the pills that I needed to take. When he asked me if there was anything particular happening to me, I told him of the red dots, but he wasn’t too worried as long as the counts were alright… phew. So, all that was left was to wait for the blood test result as it still hasn’t arrived then. Though most people hope that their blood count stays on average, I was praying that it wasn’t so--- I wanted it to be high enough to sustain me from infections and internal bleeding, at the same time low enough so that I couldn’t take the pills as it will drop my blood count lower and that can be dangerous.

Not too soon the moment of truth arrive when the doctor opened the door and said:

“Your white cell and blood platelet is too low to start the pills…”

I was about to jump and say “OOOoooohhhhhh Yeeeeaaaaahhhhh!!!”

“You need to be admitted to the hospital as the platelet count is 18 and white blood cell is at 1 point something…”

Arghh… tried to escape by telling the doctor if I could stay at home and get admitted only if it gets any worst…

“You HAVE to get admitted, I don’t want anything to happen to you especially since this is the last treatment you have…”


Well, the first thought in my mind was that I felt kind of betrayed by the doctor in a way. Since this chemo-drug was never administered to me before, I asked the doctor if it would be heavy so that I could prepare myself before the treatment. The doctor said that it was light, and wouldn’t be much of a problem.

It was easy to believe at first as it wasn’t much of a problem for the two weeks I had, before getting readmitted this time around. In fact, during the time the drug was administered it wasn’t too bad. And after that when I got home from the hospital, I felt perfectly fine for the whole week, not feeling any side effects that would hinder the things that I do daily.

Though after thinking while walking to the designated room in the hospital, I decided that what the doctor said about this last treatment being light was not completely wrong if compared to what I went through last time, it’s just a low platelet count and my white cell was enough to sustain me and not get me isolated, nor do I need be afraid of any major infections or anything like that.

Alas, things got bad to worst…

I don’t know if it’s because I got depress since I need to stay in the hospital, especially knowing the fact that this could take a whole week or more waiting anxiously for the platelet count to go up, but during that week when I stayed at the hospital, my hair started to fall off from my head. I was disappointed in a way as after one and half years since the start of my treatment, my hair finally was long enough to be able to use gel, clay, or any other hair products. Then I remembered about the thought of having my hair bald just one last time… ah… don’t need to be hesitant about it anymore.

On the first day I was admitted I had one packet of blood platelet transfused into me. Well, mom was a little curious as to why the doctor gave me one packet instead of the usual four which he did since the first time I got admitted in Pantai Hospital. We concluded that the doctor wanted to save our money as one packet was enough to keep me out of danger (one packet increases my count on an average of 15) and if the platelets increase in a few days then it wouldn’t be a problem, and I was also counting on that as I wanted to get home as soon as possible… I thought I never need to see the rooms again so soon.

But I guess things don’t always go the way as you have planned, especially things that are out of your control and in God’s hands. Each day when I was awaken up by the doctor’s greeting I can only hear the dreading news of both my blood platelet and white blood cell count dropping from the doctor. I thank God that the white cell count wasn’t dropping rapidly till almost zero (around 0.1 something) like what the blue chemo does to me. It drops, but then the count sustains for a day or two, then drops again, and then sustains again. Blood platelet I can always transfuse and stay out of danger immediately when that’s done, but the white cells are a completely different matter.

From a white cell count of 1 plus to 0.7, 0.6 and 0.5 at the end, it won’t be a surprise that I was issued by the doctor to be isolated as I could easily get infected with that kind of count (I was immediately to be isolated when my white cell count drops under 1). And that’s when the fear crept in as I didn’t want to get sick or have any kind of infections. I have had all the common infections by someone who has low white blood count except pneumonia (based on my book on leukemia that is) and somehow then I had the feeling that it was going to get me. That… and I never wanted to face the pain of an anal infection for the chances of getting it was pretty high since I didn’t do my big business in like 4 days, and I thought I was going to get a tear because of that. Thank God that that didn’t happened to me at the end. What joy I have just by doing my big business in the toilet when my white cell count was low.

And I don’t know why, but whenever my white cell count drops to a level where I need to be isolated and easily get infected, there’s bound to be some completely clueless dude or dudedess who will enter my room. It seems the chances of this happening are pretty low when I am alright, but once it drops… During this time when I was isolated came a man who has no common sense at all. I would forgive the person if he enters the room, sees that the person on the bed isn’t who he’s intending to visit, and leaves saying sorry for the mistake. Nooo… this dude came in, saw that I wasn’t the person and instead of leaving, his eyes starts looking frantically around the room trying to search for an invisible compartment inside my room, or perhaps his invisible friend, I am not sure, but the way I see it his look was serious enough like that of people trying to watch comets flying pass earth every once in 50 to 70 years. I won’t give him the benefit of the doubt that he may be taking that time to figure out if I am the friend he was suppose to visit because we look alike, for if supposedly he “is” my friend… won’t I like say ‘hello’ when you come visit me and invite you? I won’t stare at a friend like a complete stranger and ask him or her to go away, right? And to makes things worst when my mom gestured him that he was in the wrong room and asked him to leave, he was going “harh, harh?” like my mom was asking him a question. Only when I said: “Salah room” did he get back to his senses and only leave. *slaps at forehead*

I did not expect that I will need to take back my words on my previous post about how I will never need to last 5 days WITHOUT taking a bath so soon. My aunt came over to shave my head in the hospital on Friday and having hair sticking all over you after that is really frustrating, and I had to give in to take a bath. I’ll admit that sometimes I am just too lazy to take a bath, but in the hospital, the main (or perhaps second after laziness) reason I avoid taking baths is because of the chemo-pod with the needle in it. To avoid it’s dressing getting wet and all I need to use a plastic bag to cover the chemo-pod, use Micropores (the white bandage commonly used) to stick the plastic in place, and when I bath I can’t move around so freely to avoid the chemo-pod from getting wet. Lots of work, totally not worth it to me it seems. Me and mom thought we could avoid that this time around when the nurse gave us some water-proof like stickers that could avoid all the plastic bag/Micropore work, but it turn out to be foolishness instead as the sticker was too sticky and I had to change my entire dressing on my chemo-pod because it pulled out the dressing while sticking on it *grumble grumble*. Though normally after actually taking a bath, I will start thinking why in the world did I forgo this super refresh feeling just because of… laziness. I shaved my head as I didn’t like the sight of my hair dropping every time I wash my face, dry my hair, or wake up after sleeping. It seems freaky to see your hair getting less and less every day. That, and for hygienic reasons too: you don’t want to see your hair dropping on your food every time you eat.

Hmm… I guess some of you may be wondering half way, why don’t you update your blog in the hospital instead of waiting till you get home? Is it because you are “lazy”? Ho-ho, I do have a legitimate reason for this. I brought my laptop to the hospital after staying there for one or two days as I know it’s going to be a long week and I cannot survive by watching the same movie/cartoon/documentary more than twice. Mom was using it first the day she brought it to play spider solitaire as then I wasn’t in a mood to surf the internet or write anything. But the next day when I wanted to use it (which I think was the day after I shaved my hair and took a bath)… eeeehhhhh??? How come my screen black one? Tried everything I knew that could restore the screen but to no avail. It was only when I realized a slight movement in the super dim desktop background that I knew what happened --- my laptop’s screen back-light has blown. ARghhhh!!! And the effort I took to reformat it!!! Just when I thought I was bound to watching reruns of the same movie/cartoon/documentary for the rest of the week, I thank God that I still had the faulty but playable Playstation 2 at home and had an RPG game that I did not finish (which I eventually did while staying in the hospital this time around), otherwise I would have bored myself to death by memorizing lines from the same movie/cartoon/documentary that I have watched over and over again.

There was a glimmer of hope on Friday evening when the blood test result found out that my blood platelet has gone up by 1. Well, 1 may not be a significant number, but if it is increasing, even just by 1, the chances are by tomorrow or the day after I might go home if it is still increasing as the doctor can rest assured that my blood platelet will restore to normal and don’t need to stay in the hospital any longer. But that wasn’t the case. The next day my count dropped further down to a count of 15 and the doctor said that I would need to have another platelet transfusion, 4 packets this time. Since the decision to have the transfusion was only decided during the evening (had the blood test around then), the packets of platelet only arrived around midnight. I would complain as most of the time I would be having a short nap of around 2 hours at that time, but this time around during the transfusion I was able to watch Fantastic 4 at Star Movies for the first time. At least I won’t be left out in the dark when I watch the sequel. One thing I don’t like about platelet transfusion, especially 4 packets, is that most probably I would have allergies popping out by then. The good thing that it’s only itchy when you scratch it… but who can resist when you see a bump coming out from your skin?? And soon after that, my head feels like exploding inside out and my body feels really hot. Thank God that after a few hours, ever thing goes back to normal.

The other thing that I don’t really enjoy about having low white cell count is that I would need to take antibiotics at intervals in order to prevent infections. It wasn’t too bad at first; the antibiotic that I initially took a day or two when I got isolated was the injection kind. So after injecting it through the chemo-pod it was done… simple, fast and easy. Though I must say that whenever that antibiotic is injected, I could actually feel in my mouth some sort of UHU gum taste and for the first few days of administering it I could feel the pain in some area of my gums which I think was infected by bacteria by then, as later the pain didn’t occur anymore. Though it does disturb my sleep (the antibiotic comes when I am sleeping, around 11pm, 5pm and 11am), the fact that the antibiotic could be given to me real quick reduces the frustration factor. But after Friday (I think…) the white cell drop to around 0.5 by then and I was put on another antibiotic, this time the drip kind. What I really don’t like about the drip kind is that first of all, it takes a longer time; secondly, I can’t really sleep as I need to make sure when the drip is done and call the nurse to remove it, otherwise there might be a back flow and my blood starts flowing back into the tube; thirdly, unlike the injection kind, I can’t really trust the nurses on this and had to wake up to make sure there isn’t any air bubbles in the tubing that could kill me. The second and third could be countered by a dripping machine of some sort (which stops the flow when the drips finishes or has air bubbles in it); unfortunately I could only use it for a day as someone else more urgent needed to use it. The feeling of being bound to the drip and not being able to twist and turn in bed so easily isn’t that pleasant too, though I think this is just mind over matter. And… the worst of all when having a low white cell count, next to suffering the pain of getting an infection, is that I would need to suffer pain from getting a Neupogen injection to the stomach. The next day when I was given the antibiotic drips, the doctor also decided to give me the Neupogen to raise the white cell count up. He did asked me if I wanted it a few days ago as it can dramatically spur the white cells to increase rapidly, but I did not want to as an injection to the stomach really hurts and there may be a blue-black considering that my platelet count is so low. I also place my bets that my white cell count wouldn’t drop any lower than 0.7 but that apparently didn’t happen. Well, there’s two parts that I dread of having this injection: the waiting part and the actual injection itself. The last few times I had it, this injection was given around 5 in the evening, and every time after lunch I will start to have this fear of waiting and thinking when the injection would be coming and that haunted me till the nurse comes with it. Totally waste my afternoons thinking about it then. Thank God that as of now, this wasn’t the case because it’s given in the morning. So… when the nurse wakes me up around 11 in the morning and I am still groggy and all, she just say it’s time for my Neupogen injection and get it done, don’t even have the thought of waiting for it haunting me at all. The pain from the actual injection wasn’t avoidable though, sometimes it hurts really bad, sometimes nothing at all, but I guess that’s because the sleepiness I had then acted like a natural anesthetic. I had 5 (or was it 6) of the Neupogen injection. The last one was on the day before I got home, could be avoided if the doctor came earlier in the morning but when he came then the damage was already done. Though I must say, all these annoyances is still better than getting infected, as getting infected could cause me my life instead.

Oh, and talking about drips and all, another reason why I dread drips, especially at night, is because of some of the night nurses that does a not so decent job. I thank God that for the most half of the time, the night nurses that took care of me were the more elite ones who were more careful and caring, and with that I was able to rest in peace at night knowing that nothing bad would happen. But the first half of the nights there was this really scary nurse that I was always afraid of, since the beginning I was first admitted I guess. Well, remember when I said that I wanted things to be done fast so I could sleep? Yeah, I want things to be done quickly, but in a proper and moderate and safe manner, but this nurse… fooyoh, she really feels the need… the need for speed. When she injects the antibiotic I could see her using like all her strength to try and push it in as fast as possible (that antibiotic is really thick); when she draws my blood out, I can tell you it’s so fast, that I could actually feel the decrease in pressure in my heart… no kidding, I had to tell her to slow down as I am feeling something in my heart, which she goes: “Oh sorry…”; she uses the same tubing over and over again without taking a new set for the drips; and when I was getting transfused with the four packets of platelet, she wanted it to be quicker then it already was… so she kind of squeeze the packet like how you do on a toothpaste. Well, most nurses do the squeeze like toothpaste thingy only when it’s about to finish to make sure that no platelet is wasted, but when it’s still half full?? And since she was on duty for the first time I needed the drips, I didn’t dare to sleep soundly since then as with her she wouldn’t even care about when the drip is done or not and expect me who is sleeping to take care of it and tell her when it finishes… makes me wonder how those old folks are going to survive without anyone else taking care of them. Imagine the horror by the time when they wake up and all the blood has back flowed into the tube. Well, for the elite nurses they do everything opposite of what I have described, easy as that.

Talking about this scary nurse, on Sunday night, one of the elite nurses said that I needed to change my chemo-pod needle as it has already been a week. So she told me that she had written a message to the morning shift nurses but asked me to remind them just in case. Morning came, my mom helped remind the nurses, they said “yeah”, but nothing happened. Which could only meant that it was passed over to the afternoon shift, but then it really isn’t a problem as I wanted to take a bath in the afternoon before the needle is reinserted. Afternoon came, mom reminded again and a nurse finally came to pull out my chemo-pod needle and I was able to take a bath freely without the needle blocking the way. But while taking it out the nurse says that it will only be reinserted at night… I was thinking: why at night? She said all the nurses are busy at the moment and therefore it would be best to give the job to the night nurses. *Plays horror music at background* It’s not that I am annoyed they are delaying it for so long since the morning, but I was afraid that that night the nurse in charge was THAT scary nurse. I remembered the first time when my chemo-pod needle was inserted by her… instead of using a square waterproof sticker and paste it professionally; she just took some Micropore and paste it above my chemo-pod needle. That time I was like: what in the world?? You call this a dressing? Thank God at that time then I only needed to stay for one day, so it wasn’t a problem, but as of now I am not staying for one day, and if it’s her… I am soooo in trouble. Thank God once again that for that night, it wasn’t her. So, at the end: the night nurses asked the morning, morning asked afternoon, afternoon pass it back to night… what a cycle.

After a lot of waiting, good news finally came on Tuesday when the doctor told me my white cell count has gone up by one plus though my platelet was still dropping. It is a relief; at least I didn’t need to be afraid of getting infections anymore, and it meant that it’s a matter of time before I could be released. That morning my throat felt sore but I didn’t wanted to tell the doctor at first for I fear that if I did tell him, he would ask me to stay longer in the hospital for the throat to cure before going back home. What’s the big deal of a sore throat anyway? It will cure in a matter of time right? Though after thinking for awhile and realized the consequences if the sore throat is in fact something serious, I just went ahead and tell him. The doctor said that I was having the sore throat now is due to the fact that the white cell is up again and had nothing to worry about. Hmm… how could I forget about that, it’s just like the other infections I have. Makes me think how ironic it is, that even though we as humans don’t want to suffer pain in anyway… feeling pain actually means that your body is working properly as intended.

“Hallelujah!!!” was shouted on Wednesday as my blood platelet has finally increased! The doctor smiled and told me that if all goes well and not have a fever I would be able to go home tomorrow. Woah… that sounded like music to my ears. Unfortunately, on that day when I did my temperature check up every 6 hours, my temperature was always slightly above 36.9 Celsius (37, 37.1, and 37.3, around there). I would like to point the fault to the thermometer, but that wasn’t the case as most of the time the errors occur below 36.9 Celsius (had 36.1 once… isn’t that hypothermia? And the nurses just say: “Temperature normal, tak de fever”) but if it is above 36.9 Celsius, it usually does mean I do have a fever. So then I was praying to God that the doctor wouldn’t mind these slight “mis-readings” and allowed me to go home the next day, if the platelet goes up that is. I was also soooo tempted to hide the temperature report or maybe changed it so that the doctor would never know about it.

So on the next day, I was SUPER delighted and thank God when the doctor said: “You could go home…” Woo-hoo! The weird thing is, when he told me what my count was it really isn’t to say the least good. My white cell count has shot up to 6.7 something because of the Neupogen injection and if I am right, that count isn’t normal for a human being. Not only that, my blood platelet, has in fact dropped that day, not to forget about the slight fever that I think I had. So, I just had to ask the doctor why am I allowed to go home even though my blood platelet count was dropping and he told me that it was because the blood platelet was on an average level, or whatever that means, and was stable enough to go home. Well, if he said: “oh yeah horh, you better stay longer…” I would have strangled myself for making me stay longer in the hospital by opening my big mouth. After packing my stuff and getting my antibiotic pills, I gave out a huge sigh of relief: I was finally able to go home.

Though this isn’t really significant I’ll just write it down for remembrance sake. On the morning before I was able to go home, I finally manage to sit down and watch how the sky changes from black, to dark blue, to light blue in 30 minutes time starting from 6.30 in the morning. I am always amazed at how the color of the sky changes so quickly in a matter of time and wanted to watch how the sky color gradually changes at least once, as most of the time when I see it, it’s black, then I go off to do something and later when I see it, it’s already light blue. The most amazing thing is that, for the past few days in the hospital I wanted to do that, but distractions such as, nice movie to watch, the sky was already dark blue when I look out the window, I was playing games --- kept me from succeeding in doing it. So I was telling myself that staying in the hospital for another day more has one benefit, I could try and at least watch the sky gradually changing. Weirdly on the day I succeeded doing it, was the day I could go home. God’s plan seems so perfect when I think about it…

God teaches us to be patient by putting us in situation where we need to be patient. For the 11 days there I kept asking God why doesn’t He just do a miracle and allow me to go home instead of letting me suffer like that. Then I remembered about how there are some people who prayed so earnestly for their love ones to come to know Christ for 10 years plus; how people prayed that their love ones could change for the better for years… that’s when I realized that if it’s only just 11 days and I cannot take it, what about those who waited for years? As they say, God’s answer to our prayer is “yes, no or wait”. Perhaps God wanted me to trust in Him and see if I still stand firm in Him if He didn’t let things go as I wanted. Makes me realized that most of the time I kind of forget that my life is in God’s hands and not my on, that most of the time I treat God like a genie in a magic lamp and ask for things to be done my way, instead of following His way as He is my Lord; to learn of His will and purpose for me on earth, instead of the other way around.

Guess I’ll need to update what I have overcome (updated in bold):

-1 year 5 months plus (started on December 22nd, 2005 till June 14th 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)
-5 times hair dropped
-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 (+5 more packets of platelet from what I had)
- And being nausea for all the treatments except the first one and the one where I didn’t need to take any chemotherapy.
- 20 plus Neupogen injection to the stomach

Hope, this time it really is mission accomplished though, ha-ha! Thank God once again, that there weren’t any serious infections this time around, that everything went smoothly as planned, and that I didn’t need to suffer as badly as having to go through a chemo-treatment.

If you have read this far, I’ll give you a little treat through these photos. This is the first time I ever actually taken a photo of myself since being diagnosed with leukemia. Well, the other photos were mostly wedding events, but that’s not like I can ask to be excused right?

[Hmm... I guess it's time for a trim...]

Me: Boss, kasi trim sikit.

Barber: Noooo problem boss.

Me: *Dum Dee Dum*

Me: WHAT??? Boss APA NI?

Boss: Trim sikit lah boss, taklah macam Zidane?

Me: ...

(If you noticed, I was so shocked that my shirt changed colour)


After getting back on Thursday, I really thank God that I could make it on time to help in performing for the Father’s Day church event on Sunday. Well, my uncle’s cell group decided to play some Christian songs to perform on Father’s Day, to show that they still have what it takes to be band boys… err… I mean to show that father’s like them still can serve God by performing songs.

It really is fun, especially the fact that I once again felt this nervous feeling in performing like the days I used to play bass for my friend’s band. Though this time around, I haven’t been playing for so long that my fingers had blisters by the end of the practice, and had to use bandages on the fingers to play on that day itself.

I was really worried too, about the fact that my lips were deteriorating to the point that I could taste blood on it. As if it goes on, it would mean that I need to suffer a lot when eating as my entire mouth lining would be destroy by then, not to forget that I need to face my lips that are filled with dried blood every morning. Thank God though, that as of now it didn’t reach to that point. Praying to God that it becomes better instead of worst, as I would really like some rest before the pill eating starts this Thursday… though if the lips and mouth lining reached to that level I could avoid eating the pills to allow it to cure, but that isn’t all that good either. Then again, if it really does become that bad, I would not hesitate to yell at the doctor for telling me that this treatment is light, when it actually gives me the terrible side effect of all the red, blue and yellow chemo-drugs combine.


Alright, guess I’ll be going back to bed now… finally manage to update my journal once again. Phew… tough trying to record everything down…

No comments: