Sunday, November 28, 2004

Mixed beliefs?

A while ago I wrote about how I made friends with some of the patients here. One of them, C, dropped by my room today.

C : Knock knock, apa macam??? (C is chinese)
Me: Eh, C? What are u doing here la? I ingat u tengah happy-happy dekat rumah.
C : Saya datang jumpa itu satu lagi patient la, dia panggil saya datang sini, angkat air from him..
Me: Air apa?
C : Air minum la, dia kata manyak bagus, itu orang melayu sembahyang2 punya..
Me: that ah??

I thought, wah this dude really ikhtiar one... and I wondered, as muslims, are we allowed to do the same? Let's say someone comes to me with some water yang dah dibaca2 by a buddhist monk, am I allowed to drink it?

Ok lar, I better go now before I start talking and writing like C.

Long Line

Here's a picture of the long line. You tell me whether it looks comfortable or not! I personally prefer the normal ones, they're much cuter even if it takes forever to set.

The eternal search for my veins

Hallo everybody! Finally got my laptop transported to the hospital today. I'm on Day 4 now out of 5 days chemo treatment. I found out what my treatment consist of (for those who are interested..)

Day 1-3:
- GCSF (injection to induce white blood cell production)
- Fludarabine (over 30 minutes)
- Idarubicin (Slow bolus)
- Ara-C/Cytarabine (over 4 hours)

Day 4-5: All of the above except Idarubicin

How was it? Well this time I had the chemo drugs i/v-ed through my peripheral veins, since I don't have the Hickman line anymore. Everything else went in fine...until it came time for Idarubicin. Shit it's painful!!!! So for the first three days, the doctor had to set a temporary line for me everytime my hand starts to ache. And looking for a good vein on my hand is like searching for the holy grail. My mum tells me I should start doing more housework...heheh. Anyway, thankfully I had a doctor who never gives up, he will try until he finds a good vein, even if it means he has to squat by my bed for an hour.

So Day 1-3 was quite painful. Ok I take that was very painful! Day 4 came and I relaxed a bit. Mid-day, I realized that my line was blocked. Water wouldn't drip in. I thought, shit...not another "poke-my-hands" session!! The doctor on-call came and couldn't find a usable vein, so after getting clearance from the consultant, she decided to insert a long line on my arm. A long line is like a Hickman line, only that the line is put through the fold of my upper and lower arm, instead of through my chest. It would last longer than the normal lines I had. I'll post a picture later.

I didn't ask for sedation for this procedure, since I thought it wouldn't be too painful. But my God was I wrong!!!! I was SOOOOOO wrong!!! I don't know about other people, but I don't take pain too well. So I cried on my bed while the doctor tried 3 times before we were successful. And when we were done, I realized I couldn't fully bend my arm. AAARGGHH!!!! I get very upset when I lose a bit of I cried a bit more. This thing on my arm is really the most uncomfortable thing in the world!!! I can slowly bend my arm now..hope tomorrow it becomes more comfortable.

So tomorrow will be Day 5 and the last day of chemo treatment. After this it will be about 4 weeks of observation, where I will get treated with antibiotics etc as I develop fevers, infections etc (hope not laa...) Yesterday one of the nurses said to me "You must be counting the days to go home, huh?" At the moment I can't even picture the day I get to go home, it seems too long ahead!! I'm not encouraged to have visitors or wander around the I've borrowed four seasons of The Sopranos dvd set to watch while I'm stuck in here. And I've brought a Matematik Tambahan book to take my mind off things. I know it sound nerdy, but it really does work. When worried, do math - try it out. I'm also thinking of buying a TV card for my laptop...know any good and reasonably priced ones?

Adios for now!

Friday, November 19, 2004


Hi! Hope everyone had a good hari raya/deepavali. I certainly did. went visiting on the first and second of raya...had too much rendang and ketupat, but it was all good. spent almost every other waking hour trying to finish Warcraft III (picked it up again soon after coming home from the hospital). Also went to the supermarket every now and then when I got really bored...found a really nice fishing hat there for only RM13!

Checked back into the hospital on the 17th morning for my bone marrow aspiration. the coward that i am, i asked to be sedated for the procedure. so i didn't remember what happened, and slept all day until 6.30 PM. woke up starving and hoping that my results would be better than the previous one.

Next day - BMA results day. Dad arrived at 8.30 AM to see the doctors. We waited semi-anxiously (me semi-sleeping), and the docs only came around to my room at 11 AM. Maybe they wanted to see me last. They said a lot of things, mostly medical jargon, and I didn't understand a whole lot of it. I didn't know what to make of it, are they good news, or bad news? The docs repeated what they explained in layman terms, what i got out of it was - i am in partial remission, but about 70%-80% of the blast cells are still in my bone marrow. My blood counts showed that some of the cells developed into mature cells, because my platelets have gone up into the normal range, and my haemoglobins and total white have gone up, although not much, over the past 12 days. I have what they call "refractory AML" (stubborn cancer cells, just die, will ya!?).

Anyway the HLA typing results came back, and they identified one of my brothers has a perfect Class I match with me, so he needs to come back to see if we have a Class II match. Basically there are 6 antigents they need to match for my brother to become a donor. We have a perfect match for the first three antigents (Class I), so we now must test for the next three (Class II).

So, as far as my current condition, the docs said something about re-strategizing the treatment. I don't fully understand yet what they intend to do, but i'll try to in due time. What I get is next week I will start on my 3rd chemo course, under the FLAG regime. I'm still trying to find out what it is, but I believe it will consist of a set of more potent chemo drugs, since the doc said that it will take me about 4 weeks to recover, and I should preferably be treated in a single room.

I guess I'm not having it as easy as I hoped. But I suppose I'll just have to be patient and keep on trying. I got to go home today, but have to be back in the hospital by Monday morning. That should be enough time for me to finish the rest of my Warcraft III chapters..heheheh.

Wednesday, November 10, 2004

No News

I guess no news is good news. Got rid of the fever and cough. Feeling a bit tired, despite just sitting around in my couch watching TV. hope it's not the anemia kicking in...i want to raya!! Hmm..actually most of my hari rayas consist of me sitting in front of the TV watching Hari Raya specials anyway. So I guess it won't make too much difference.

Selamat hari raya and Happy deepavali to everyone. Drive carefully ok!

Monday, November 08, 2004

Little Cutieeesss!!

was browsing through my photo folders, and found this. from my trip to Surabaya earlier this year. aren't they cute??!!! wish i had a couple of them baby tigers at home.

had a tuna sandwich and tempe goreng for lunch. odd combo, but quite sedap!! tempe must be fried with rempah soto. yummy!

hope to get someone to sneak me some Fanta Strawberry later. been having a craving for Fanta Strawberry for days...slurrrp!! my mom doesn't let me have sodas anymore.

so far the day's been smooth sailing...thank God.

Sunday, November 07, 2004

Bank Trip

Trip to the bank was OK-lah. Mainly because I got to spend some time alone with Z. But I think it was too much excitement for me. Felt sick most of the time, came home and vomited my dinner out - gross! Probably motion sickness from the ride and watching all the other vehicles zoom by on the highway.

Got through the night without fever. Yay! I'm becoming a Malay drama and cooking show addict. Slept at 2.30 AM watching one malay drama after another. Man, I gotta think of something more useful to do with my time!!

I just got a visit from some family friends whose son was diagnosed with Chronic Myeloid Leukemia in 1989. He has survived for 14 years now, married with a child. The parents told me that their son even sat for his SRP examinations, although he collapsed on the last day of exams and had to be readmitted. How very determined. I really respect this guy. I can't even bring myself to think about the thesis I still have to write!!!

Saturday, November 06, 2004

I get to go out tonight!

I've become like a child, constantly guarded by my parents. I must wear a sweater so I won't get cold, I must check my body temperature and blood pressure every few hours in case of fever, I must wear slippers if I were to step into the kitchen, I must take my antibiotics, I must drink water constantly, I must take Lingzhi, I must drink the soy protein milk, I must not touch the cats, etc, etc, etc.

So can you just imagine my anxiety when I wanted to ask for permission to go out with Z tonight. Purpose? To pay my credit card bill. Really. I got the permission, after promising to:
- wear a mask
- go to the bank and come back straight away
- not smoke (mainly warning for Z, I quit the moment I was diagnosed)

I'm excited. It will be a short trip, but I'll take what I can get. Beggars can't be choosers, no?

What a day...

Spent the day watching TV. Jalan2 Cari Makan is awesome! I would love to have a job like Maria Tunku Sabri. Spotted some Petronas Dagangan guys on the show as well, as the show is sponsored by PDB.

Cough and fever still not gone. I wish they would go away...!!


Friday, November 05, 2004

Honey....I'm home!!!

I'm home!! Discharged with a cough, which I hope will go away soon.

I had a whole entry typed out just now, but somehow lost it when I clicked "Publish".

Nway, my total white count went back down to 2.3, though my blood film's still clear of blasts, according to the doc. At 5.2, I was thinking of maybe having dinner outside one of these days, but I guess that plan will have to hold. I suddenly have a craving for Tacos, which u could get in Jake's in Damansara Heights. Yummmm...

Quite sad to leave the hospital just now. After 3 weeks, I made some friends who are also AML patients. We sit around bitching about our condition and what we do to stay well during chemo. In addition to that, there's a new MO in charge at the ward. A more open person, who you can talk to or ask questions. Unlike some others who regard you as if you're an idiot who's just spoiling their day asking stupid questions. This new MO even asked me if there's anything else he could get for me during his visit this morning. Never heard that coming from the other snobby MOs. As a patient, I immediately felt a bit better and cared for...bravo to the doc!

Ok TV time!! Bye..

Thursday, November 04, 2004

Project Lintball

My latest project, Project Lintball, which got abandoned last week when my mum decided to take my sweater home for a wash. The lintball has grown twice as big from the picture, but got accidentally swept away by the cleaner one morning. Careless me, I should've guarded the ball with my life.

- el nadio loco

A variety of news from the hospital room...

I haven't lasted a day without having a fever attack, despite the removal of the Hickman's line. Developed a bit of a lung infection, which explained the cough. The fever spikes, however, are getting lower and lower. Which is better than nothing, I guess.

On one of the nights, I had a horrible chill attack. It didn't feel cold, but I was shivering like mad. It turned out that a medicine (Ampho-B) that was supposed to run for 4 hours plus was given to me within less that 2 hours. The chills were horrible, horrible, horrible!!! I will never trust that nurse again.

I partially got over the loss of the Hickman's line. Thought of a few good things about it gone (although it took me a few days):
- less fevers
- people won't wonder why my chest looks uneven
- being poked with needles for blood samples isn't too bad
- err...will think of more things...

Anyway, I just would like to share an experience I had a few nights ago about the attitude of an M.O. here. I was having one of those fevers, quite high, about 39.8 degrees Celcius. In cases like this, the staff nurse will have to call the MO (Medical Officer) On-Call to do a blood culture on me. It's basically just taking a sample of your blood, and putting it into a couple of bottles to be sent to the microbiology lab. So, a couple of hours after the nurse took my temperature, the MO finally arrived. He had a look on his face as if i disturbed him from sleep or watching EPL or something. After he cleaned the part of my arm where he wanted to withdraw blood from, he asked me to turn my arm a bit. Apparently I didn't turn my arm up to his satisfaction, so he took it (roughly, I might add) and fixed the position to his liking. I mean, as a doctor, couldn't he be more gentle? It's not like I want to have that fever or be in this hospital at all!! Anyway, I was so pissed so I just did not look at his face. My mum was also quite shocked at that kind of behavior. I have a couple of other incidents with this unkindly person, but let's save it for another time. The consultants here are always kind and gentle to the patients, I don't understand why he cannot observe and learn from them. So in the end we just concluded that maybe he was forced by his father to study medicine (when he wanted to be in fashion school maybe), hence the attitude. If a person can't be bothered being kind to a patient, then don't bother being a doctor. To be in this profession, it must be your PASSION to help people. If you don't have that in you, then just go do business improvement projects like me.

Ok, enough complaining. Good news today. My total white blood count went up to 5.2 (avg 4.0-11.0). Alhamdulillah and Yay!!! Although it wasn't without a bit of cheating. I was given a drug called GCSF, that is supposed to induce the growth of white blood cells. The better news is that the doctor said that there are no more blasts seen from my blood film, but we'll get a better picture from my next bone marrow test scheduled after Hari Raya. More Alhamdulillahs and Yayss!! I'm also drip-free starting today, since they took off all IV drugs and switched me to oral antibiotics. They suspected that my fevers may have been drug-induced..which could happen to some patients given too many antibiotics.

For now, I'm hoping to sustain my blood counts tomorrow so I can get the hell out of here!

ciao tutti!