Stem Cell Collection

Yesterday we went to the clinic for my checkup, and for my brother's stem cell collection session. My checkup went well...my blood counts are "as normal as they can get", according to the doctor. Then the normal warnings, no gardening, no cats, lots of rest, eat properly, etc.

The preparation for my brother's stem cell collection looks rather painful. First, the nurse inserted a needle on each arm. The needles are damn big! And they stayed in my brother's arms for 4 hours...ouch! Next she connected the tubes. My brother had to sit next to the machine. The machine would take blood from one arm (i think 200ml at a time), separate the stem cells from the other cells, and return the blood back through the other arm. So it cycles that way until it reaches 12,000ml. The target is to collect 3 million stem cells from my brother to transplant into me.

When the collection finished, we all went out to lunch while waiting for the clinic to call us back with the stem cell count. After about an hour an a half, we received a call from the clinic, saying that they only managed to collect 2.33 million stem cells. So he went back today for another session.

Today we managed to collect another 5 million stem cells. Yay!! It's more than enough...so there's going to be enough for me, and for my brother to store for himself in case he needs it in the future.


The stem cell collection machine from the back. Note the yellow bag contains plasma, and the red one contains waste. At this point the first batch of stem cells haven't been separated yet.


The front view of the machine. It looks quite ancient huh? But apparently it's a very high tech machine that costs about RM300,000!

......

condolences to my friend, whose sister was shot at Giant last saturday afternoon. May Allah bless her soul.

as for myself, i guess things are good when there's not much to write about. my leg is completely better, i haven't had a fever in days, and most of the time i can sneeze and yawn properly without feeling pain in my chest. so i'm just going to put up the lyrics of one of my favorite songs, dedicated to my parents, my brothers, Z, my friends and everyone who has put up with me thus far.

Flying Without Wings - Westlife
Everybody's looking for that something
One thing that makes it all complete
You'll find it in the strangest places
Places you never knew it could be

Some find it in the face of their children
Some find it in their lover's eyes
Who can deny the joy it brings
When you've found that special thing
You're flying without wings

Some find it sharing every morning
Some in their solitary lives
You'll find it in the words of others
One simple line can make you laugh or cry
You'll find it in the deepest friendship
The kind you cherish all your life
and when you know how much that means
You've found that special thing
You're flying without wings

So impossible as it may seem
You've got to fight for e-very dream
'cause who's to know
which one you let go
would've made you complete..

Well, for me it's waking up beside you
to watch the sunrise on your face
to know that i can say I love you
in any given time or place..
Those little things that only I know
Those are the things that make you mine
And it's like flying without wings
'Cause you're my special thing
I'm flying without wings..

And you're the place my life begins
and you'll be where it ends
I'm flying without wings
And that's the joy you bring..
I'm flying without wings..

excavation complete!

finally finished it...hehe

photo shots

was trying out my camera outdoors...


Owen my cat (doesn't he look like the cat in the Friskies ad?)


Daun sirih (testing the macro function)

i'm an archeologist!

spent the afternoon with a fossil excavation kit that i received as a birthday present. It's quite fun, really. It's like jigsaw puzzle, only that you pretend to be excavating a fossil...here are some pictures i took (with my new digital camera!)


When we first found the fossil


Hard at work


2/3 done...note the lighting. Just like at a site, yeah? kekeke

i'll put up another picture when the thing is completely excavated. hehe.

insurance shminsurance....!!

i'm not happy with the way Great Eastern is treating me. I bought a critical illness policy in 2003. When i was evaluating it, the agent told me that the claim process is short and easy. It's been 4 months now, and the claim process is still not complete! *(&^&*%^%$$^*%

First i had to file all those forms, which i don't mind. Then i had to get a copy of my bone marrow aspiration, doctors reports etc. When everything was completed, i gave the form back to the agent to get processed. I waited 3 weeks. Then i got a letter, asking for my employer's address and my GP's address. Why didn't they just ask for it the first time around? And my GP's address is right on the piece of paper where he wrote my referral to the hematologist! I called the insurance company to ask why they need these info now. They told me that they wanted to check with my employer that I didn't hide the fact that I already had leukemia when I bought the policy (by looking through my MCs). Yea i guess some people would do that, huh?

And then there's the GP issue. The agent called me last thursday to tell me that she picked up the forms, and will send it to my dad's office, since she's not familiar with the places in PJ. A week went by, and dad still hasn't heard from her. And the letter still hasn't reached the GP. I don't know what her problem is, but i shouldn't have trusted her to do it. Arrrgh!

The thing with insurance is that you need it, but it's such a pain when it comes to claiming! Honestly, i didn't shop around when i bought it. I was so tired of listening to the agent babbling and asking to see me again and again that I just bought the insurance to shut her up. Sure enough, she faded out of my life. Furthermore, at that time, i thought, if i were to go shop around for insurance and have to bear with agents like that, i didn't think i would survive. Now i'm stuck with a useless agent, and an insurance company that has a complicated claim process. When all this is sorted out, they can be sure I'm not buying insurance from them again!

bargh!

:-)

aaah....so much time, so much to do, too lazy to do. it's been a hectic day so far. went to Hyatt Saujana to pick up a cake, then went out to buy lunch. Car wouldn't start after buying lunch, so had to wait for mum to come to fix it. Whaaah such a hot day outside!! then came home to find my Palm ran out of battery a few days ago and all my data is gone! Not much data la, just some games and most importantly my banking data. Unfortunately my last sync was in Nov 2004, so i had to copy back the transactions from maybank2u.com...aaaaaarghh. then i did my tax returns, finished it...yahhh!

i still have loads to do, like filing all the car loan and house loan receipts...argh! they're all over the place. i'm so lazy!!

my leg is getting better. i don't know what did it. i tried the detox kit (the one where you paste some stuff under your feet), and i tried some traditional stuff. I find the traditional stuff weird, so i won't talk about it. heheh..

I think i want to go get myself a digital camera now. Ciao...!!

birthday wishlist

yup, tomorrow i'll be another year older. while nibbling on my New York Cheese Cake at Secret Recipe this afternoon, i thot, i have done quite well for myself so far. I have great friends, a good job, good steady income, a car. Unfortunately i'm not healthy enough to be spending time with friends or go to work, spend the money, or ride the car. Oh well, God gives, and He takes away, yeah? So...my birthday wishlist is as follows:

1. For the lung infection to totally clear up so i can have a full stem cell transplant
2. For all other lurking viral/fungal infections to clear up
3. For my stem cell transplant to be successful
4. Holiday in Disneyworld, Florida (wooohoooo!)
5. Trip to Taiping Zoo
6. Moisture restored on my face, it's so dry despite me drinking bottles of water!

That's it then! Ciaooo

doctors are like...

I was reading The Rule of Four last night, and came across this paragraph:

Doctors are like gamblers, always looking for the right combinations. Patients are like slot machines: twist their arms long enough and you're bound to hit the jackpot.

Jangan marah ye docs, but i think a lot of times it's true. Haha.

ciao

stem cell transplant

went to the clinic yesterday for follow up. my blood counts are all normal, my chest seems clear and the splenic nodule has reduced.

after the follow up, me and my brother (plus mum and dad) met with another specialist for transplant consultation. it was a lot of info!! for the donor, the doc gave two options. the first is to go under GA for stem cell collection from the bone marrow. The doc said the procedure would take about 45 minutes, then rest for two days, afterwhich the donor can resume his normal life. The second option is stem cell collection from the peripheral blood. The donor will receive 4 days of GCSF injections to get his bone marrow into overdrive. Once the system is in overdrive, the stem cells will spill into the blood stream, which will be available for collection. This procedure takes 4 hours, but it's relatively painless compared to the first option. My brother decided to go for the second option.

as for me, the next step is to go for a mini-transplant. Doc explained that mini-transplants are designed for elderly patients and patients with fungal infections (like me). The dosage of radiotherapy and chemotherapy for a mini-transplant is about one-fifth of a conventional transplant. The good thing about a mini-transplant is that my immune system won't be wiped out entirely. However, the chances of the leukemia not entirely eradicated will be higher compared to a conventional transplant.

so, i'm here resting at home, trying not to get infected with anything more, hoping that the fungal infection in the lungs will totally clear up by transplant time. at the moment i'm trying to keep my lungs fit by doing deep-breathing exercises and blowing balloons. I'd like to take daily walks in the park, but at the moment my leg is not allowing me to do much brisk walking.

ciao!

i'm a bum.....

my my, it's already 3.45PM. I had a whole list of things to do today, e.g. research, tax returns, insurance claims, etc. None is accomplished so far. I'm such a lazy bum.

my leg still hurts, sometimes...i don't know what it is. people ask me if it's sengal or bisa, how would i know? All i know is that I can't place my leg in one position for a long time. i have to move it every so often, which sucks when i'm trying to sleep. last night i tossed and turned in my bed, and finally just took some painkillers and fell asleep. arrgh..

last night i had rib-eye steak for dinner. yummy!! it was just as wonderful as i thought it would be. after that i went for some coffee, and headed back home. mum said, "i will only let you out this once." oh dear.

my mum's maid left today, to go back to her family. Who's going to help out with the kitties now? Boohoo!

phew...!

got to go home for a longer time today. i could leave the hospital at noon and come back at midnight. by sunday i'll be discharged...for the time being.

so....my splenic biopsy story. ooof i didn't know how painful it would be. I should have known when the specialist at the private hospital asked the medical officer to accompany me that day. I was expecting another lung biopsy kind of thing. How wrong I was! The specialist put a needle in my spleen, and he said he would first aspirate whatever that was in the spleen nodule. It was pus...don't know where it came from. After two aspirates, he decided to do a spleen tissue biopsy, but by the time, i was already experiencing severe pain in that area. So he decided against the tissue biopsy..thank God.

Days after that, i had fever and abdominal discomfort. Air entry on the left lung was reduced..turned out there was some fluid as a side effect of the splenic aspiration. The thing that really irked me was, before the splenic aspiration, i was fine! i hadn't had a fever in days, my breathing and lung condition improved. so i had to stay in the hospital for a few more days. everyday, a physiotherapist would come and help me with deep breathing exercises to improve the condition on the left lung.

Then, last monday and tuesday, i felt pain in my right hip, down to the lower leg. Doctors didn't know what was going on, because from the x-ray, it seemed that the hip joint was OK. I took all sorts of painkillers, which didn't help. Alas, on tuesday night, mum came with some Yokoyoko and rubbed it in the aching areas. Problem solved.

Had my third CT Scan yesterday. Doctor came today and told me that the lesions in my lungs have gotten smaller, which is a good indication. I guess I could go for stem cell transplant soon, then. Doc plans to discharge me on Sunday, and indicated that I should come back for checkup at the clinic in two weeks time.

So that's the story so far..I will get to be at home for a while. Yay!!

Ciao.

boinkboink

aiyah.....got to go out for a couple of hours today to find:

1. my insurance and roadtax are not ready yet (JPJ offline...ye la tuuu)
2. desperate housewives episode 7 tak siap download lagi!!

baargh..

and i've got to fill up a performance evaluation form for my workplace...

gotta go now. will tell u the story of my splenic biopsy another time soon.

ciaoao!

weeehooo

went back to the hospital last night. upon my arrival, the nurses told me that my medication wasn't available. Whatt??!! aiyyaa...why la didn't they call me first! called my mum right away to come back and pick me up. no point staying in the hospital if there's nothing to do, right? the hospital ran out of the antibiotic i was on, so dad went to a private hospital to purchase a couple of tablets for me. spent the night at home last night. woke up with a couple of mosquito bites, but it's better than spending another lonely night in the cold hospital room.

so early this morning i made my way back to the hospital. according to the doc, my x-ray shows much improvement from last week. official results for the lung biopsy came back negative (as always), however, it says that there are no traces of fungi, TB or leukemic infiltration. Alhamdulillah. doc also informed me that the results from my bone marrow trephine was excellent, there are no traces of granuloma (ok,what the hell did i just write??). We're still going for the spleen biopsy since i'm starting to feel some discomfort around that area. other than that, my protein level is rather low, so i need to work on that (a nice big steak, if my mum permits! hihi).

did nothing else in the hospital. yesterday's blood count results showed my haemoglobin count was 7.2 so they wanted to transfuse blood. i asked the nurse to repeat the test by taking a sample from my arm instead of from my neck line. a lot of times, blood sample taken from the neck line tend to be a bit diluted. since there was nothing else to do, i decided to go home. promised the nurses that i would call them in the evening to see if i need to come back to the hospital.

so...i just called the ward 5 minutes ago. the nurse informed me that my medication is still not available. my repeat blood test results came back, haemoglobin count 7.6. looks like i will have to get some blood transfused soon. but since i have to purchase a transfusion filter, the blood transfusion can't be done until tomorrow. the conclusion is, i get to spend another night at home!! yahooooo!!!

ok...i'm going to go find something else to do now. i've been staring at this monitor since i got back, chatting and watching Desperate Housewives (which is an awesome series, by the way).

babai!!

Monday blues...

fuh...what a day.

took my weekly x-ray today. from what i see, it looks clearer than last week's (not that i'm an expert, hehe). we'll wait for what the doctor says tomorrow.

then i came home...saw my cat Owen lying in the cage. He's been like that for the past few days, so i made my brother take him to the clinic yesterday. The vet suspects he's been hit by a car. On the way to the clinic, the poor cat pee-ed in the carrier, and came back smelling like awful!!! yeurgh! I asked everybody at home to help bathe the cat, but nobody would. I would do it myself, but if i do my mum will be furious. So in desperation, i called Pets Wonderland (groomers on leave), Groomingdales (too far from home), and finally my vet. Luckily the vet said she would do it for me....for 50 bucks!! Oh well, doesn't matter-lah..

ok...got 10 mins to get ready to go back to the hospital. may not be coming home tomorrow. i have to get my neck line re-stitched...ouch!

bye bye!

to those who asked...

i was diagnosed with Acute Myeloid Leukemia in Sept 2003. you can read more about it here.

it's been almost 6 months now, and i'm currently treating my lung infection and preparing myself for stem cell transplant.

bye!

happy saturday! (i'm running out of cool titles)

"knock knock"
"come in!"

nurse : kak, kalau masuk Ampho-B pun akak kena masuk pethadine ke macam Abelcet?
me : hah?? takde stock Abelcet ke hari ni?? yes yes, kalau Ampho-B ntah2 kena bagi double dose pethadine.
nurse : haha, mana boleh bagi double.
me : ok, make sure Ampho-B tu habis dalam 5 jam. hari tu lama sangat nak habis teruk saya menggigil. u datang check tau!!
nurse : ok ok.

Last night they ran out of stock on Abelcet, the antifungal i've been receiving. So they've decided to replace it with Ampho-B. It's the same drug, but with Ampho-B, i had very bad reactions, which is why I'm getting Abelcet instead. I informed my parents that they're switching the drugs for the night. Alamak...wrong move i think...it was past midnight and i think i made my parents worry that I might get a bad reaction during the night. Told them that I will be OK and that i will call the nurses if anything happens. Luckily I slept like a baby through the night (and through the morning haha) so there were no complications, thank God.

Oops...is it 2PM already? I better go do something else with my precious time at home now. The doc came in late today and i didn't leave the hospital till noon. Looks like I don't have much time today. Yesterday I left the hospital earlier, so i followed my mum to the supermarket, trying to freak people out with my neck line. keh keh keh. No chance for that today, i guess.

ciao miao

Happy Friday

don't know what to write today...so since it's friday, i thot i'd copy down something from the Qur'an.

Dan (ingatlah kisah) Ayyub, ketika ia menyeru Tuhannya: "(Ya Tuhanku), sesungguhnya aku telah ditimpa penyakit dan Engkau adalah Tuhan yang Maha Penyayang di antara semua penyayang." (83) Maka Kami pun memperkenankan seruannya itu, lalu Kami lenyapkan penyakit yang ada padanya dan Kami kembalikan keluarganya kepadanya dan Kami lipat gandakan bilangan mereka, sebagai suatu rahmat dari sisi Kami dan untuk menjadi peringatan bagi semua orang yang menyembah Allah. (84)

(Surah Al-Anbiya': 83-84)

Maybe I'll have more things to write about next week.

bye!

Gong Xi Fa Chai!

Happy Chinese New Year to all who celebrate!

The deal with my doctor of going home whenever i get bored didn't work out. Another doctor came on FT day and changed my medications. The new medications take a long time to finish in total, so I couldn't go home till today. The plan now is to stay in the hospital at night, get the medication IV-ed while i'm sleeping, and go home after the doctors' rounds. I will have to come back to the hospital to get the next round of medication. I plan to do this everyday for as long as i can. Dad says I should try to minimize my stay in the hospital to avoid catching other bugs (I totally agree!!)

My condition (lung infection) has improved since the last time i wrote. The fluid has completely disappeared. For those interested, I'm now on Linezolid, Abelcet, Ciprobay and Voriconazole. I'm being treated on an empirical basis, since every single thing that was sent for culture has come back negative (blood, tissues, etc.)

Last wednesday, i went for a CT Scan (lung & abdomen). The results showed that some of the lesions in my lung has disappeared, but a couple new ones appeared. The lesion in my spleen has enlarged. To give the doctors something to work on (since they don't know what kind of bug is infecting me), I agreed to have a lung biopsy. Was quite nervous before the procedure. The radiologist constantly warned me not to move while the needle is in my lung. He said even if the needle moved a few millimeters, he would have to do it over again. At one point, blood went up into my mouth. I didn't dare tell them, neither could i open my mouth to let the blood come out. In my dilemma, I just decided to swallow the blood back. It was disgusting, but i'd rather swallow blood than have the radiologist poke my lung again. I was stiff as a statue the whole time, in the end they said that I did a really awesome job during the whole procedure. This was done in another hospital. After the whole thing, I got to go back to my hospital in an ambulance. My first ride in an ambulance! Quite cool...(yes i memang jakun)

The results from the lung biopsy came back negative, they didn't grow anything. So we're now basically back to square one. Now they've decided to biopsy my spleen. Aaaaaaarggghhh...why not just biopsy my spleen in the first place!!!??? And I don't know if it will make any difference. Oh well. As everybody tells me, sabar je lah....

Ok lah...better go eat. Have to go back to the hospital in a couple of hours.

Ciao my friends!

GONG XI FA CHAI!!!

hello!

so, that wednesday..i was readmitted to the hospital. i went for an x-ray that day, and it turned out the lesions in my lungs were still there. on top of that, there was some fluid in my right lung, which was causing the pain (it wasn't muscle pain as i thought!). so back into the hospital i went. i wasn't prepared for a long stay at the hospital, so i didn't bring my computer with me that day. every day after that i lived with the hope that i would be able to go home soon, so the computer was never brought to the hospital.

the docs decided to treat me with an antifungal medicine called Abelcet, since i cannot tolerate the normal antifungal, Ampho-B. docs told me most patients don't get the side effects (chills, fever) with Abelcet. unfortunately, as i discovered, i'm not most people. while receiving the first dose, i got terrible chills. as it is, it was already painful for me to breath, so during the chills, the breathing difficulty became worse. that night i was struggling for breath. i saw my mum pacing here and there asking the nurses for help. my hands were turning blue. a doc later came and put me on an oxygen mask and sedated me, and i felt a bit better. man, it was a scary experience. it was the first time since i got ill that i really felt i was fighting for my life. i prayed to God to let me live that night. thankfully He answered my prayers.

after a couple of doses of the antifungal, i kind of got the hang of it. i take 2 aspirins, get a shot of petadin (a drowsy drug), make sure the antifungal goes in within 4 hours, and usually i'll be fine. my fever and breathlessness has gone now, but i'm still coughing. i now have a neckline (which looks more horrible than a long line), since the veins on my hands get damaged easily and had to be changed everyday.

so i was having fever, breathing difficulty, cough, etc. to add salt to the wound, i grew a lump on my upper left groin (near where i had the femural line). doc was worried that it may be a lymph node infection. i went for an ultrasound, which thankfully showed that it was just absess. there was some pus and blood inside. gross! at that time it was so painful that i was unable to walk. a surgeon came to have a look, he told me that it's quite small, and there may be no need to do anything. but i decided to have it removed, since i thought, i might as well bear the pain for one day and get it over with. but what nobody told me was, there is daily dressing after that!!!!! the pain is excruciating! thankfully, now the wound has started to close, so it isn't too painful anymore.

anyway, on tuesday the 25th, i had a bone marrow test. results were excellent, although docs said they can't really say i'm in remission. i still have about 8% blasts in my marrow, and to be considered in remission, one has to have less that 5%. i think these numbers are arbitrary, and i'm happy about the results. however with this 8% blast cells still existing, the docs had a dilemma of whether to give me another round of chemo, or to head for stem cell transplant as soon as the lung infection clears. both options have their pros and cons. to go for another chemo, i would risk more infections. on the other hand, we don't know how long it will take to get this lung infection to clear before we can do the transplant. so the worry is that the blast cells might come back if we take too long to clear the infection. in the end they decided to clear the infection and head for transplant soon after. in the mean time, i'll have to stay in the hospital to receive the antifungal every day until my lungs clear out. boohoo!!! so far x-rays have shown that the fluid is gone, however some lesions can still be seen in the lungs.

so that's my story to date. i got to go home today for a few hours. doc told me if i feel bored and i'm not having a fever, i can go home or go for a drive for a few hours. but i have to be back at the hospital in time for my medication.

till next time!

aaarrrrrggghhh

i might have to go back to the hospital today. yesterday i had a temperature of 39.8 degrees, and i find it difficult to breathe because my whole body aches when i attempt to take a deep breath. it's all because of the damned cough/lung infection that won't go away. the cough was so bad because it starts pulling my muscle everywhere. the cough has subsided a bit now, but my body still aches.

till next time.

sunday ramblings...

woke up early today...well, 9.30am is quite early for me. took my medications, and went down for some roti sardin my dad bought me. yummy...! after that, i put on my mask to give my cats their medication. people in the house kept telling me that one of the cats ada kudis la, bleeding ears la, and i should take it to the vet. but nobody even bothered to give the poor cat her medication we got from two months ago! i thought i'd start giving the medication and see what happens..if it doesn't improve, then i'll take it to the vet again.

anyway, i'm supposed to be waking up earlier than 9.30am to get some exercise. doctor's orders. doc said i have to strengthen my heart and lungs before i go for transplant in february. it seems my lung infection is still there...my cough hasn't improved much since i came back..if this infection doesn't clear up by transplant time, then my transplant will be delayed. i honestly don't know whether to be upset or happy if that happens. on one hand, the faster i do it, the faster i will get better, insyaAllah. on the other hand, i heard some scary transplant stories that doesn't make me too excited to go through it.

mum told me yesterday that one of my roomies at the hospital died on christmas eve. She had Lymphoma. She was 22, on her way to becoming a nurse. I didn't speak to her much, she always seemed so weak and in constant pain. But at times when she was well, she was a very cheerful young lady. Her father brought me some telur ayam kampung from where they live. God bless her and her family.

home sweet home

after 52 days of being admitted, i finally get to go home last tuesday. unfortunately, i haven't been feeling too well since i got home...my cough came back, and i had a little fever.

i'm gonna go wash my face and brush my teeth now. bye.

drag....

Living with Tigers was excellent. It's about two men who decided to take two tiger cubs born in captivity into the wild and teach them how to become wild tigers.

Have to go back to the hospital tonight....what a drag. I haven't caught a fever since I got home yesterday, although my cough didn't get much better. Oh, did I tell you I have a physiotherapist? He comes everyday and knocks my back to get the stubborn phlegm out of my chest.

I hope i get to go home (for real) soon. My total white count is within range now, but my platelet count seems to go up and down as it pleases, so I may have to get a few packs transfused before they can let me go home.

nothing much going on. got a sore under my tongue that i feel like poking with a needle..arghh!

adios.

finally, a change of air

huh....i finally get to go home today. only for a day. i have to be back in the hospital by tomorrow evening...blargh. i feel much better now that i'm at home! and if i wake up early enough tomorrow, i'll be able to catch a rerun of Living with Tigers on Discovery Channel!

my brother's getting engaged today...i'm going to go sebok2 downstairs.

boo hoo

looks like i'm definitely going to miss Living with Tigers now. They want to keep me here until Monday at least. aaaaaarghhh...i need to go home!! I have been admitted since 15th November! That is 45 days in the hospital!! i want to go home and take a nice long shower, sleep in my bed, look at my cats and laze around in front of the TV. And I want to be out of this kain batik and back into my track bottoms!

I know, it's just 4 more days, but I can't stand this anymore!

Btw, good news. Nurse said that on the 4th, my brother, me and my parents have to go to the clinic for Transplant Counseling. Looks like I have a donor. The doctor have actually told me a few times over the past couple of weeks that I have a match, but I refuse to get too excited in case they got the info wrong..there are so many patients here. So I guess that's good news. Don't know for sure what the plan is, but the doc said they're planning for a stem cell transplant at the end of Jan 2005.

Ok la, better log out before I get another stiff neck and headache.

some questions for friends

rina: can u give me your recipe for lasagna? remember u used to bring it back to school dulu? I don't want to buy from the shops coz they're always too oily..

everybody else: does anybody know who the franchise owner for Subway Sandwiches in Malaysia is? I want to write them a complain letter.

Phew.....feeling much2 better today. Last night mum went to see a researcher at a local university. She specializes in herbal medicine. So mum got some ginger tea and some herbal pills. Combined with the prescribed antibiotics, lingzhi, Ensure, Nutriblend, various doa, etc, i'm definitely feeling better now.

I should get some rest...best not to count your eggs too soon, eh?

selfish me...

the words i wrote last night...complaining of pain here and there, unable to sleep, i wish i could take those back. 25,000+ people have died in the recent tsunami, and all I can think about is myself.

Al-Fatihah.

5 days later...

Yup, still got the fever. The dilemma now is that I also have some liver problems due to the chemo, so doc advised not to take too many paracetamols. So i had to sponge the heat off with wet towels. Many sleepless nights for me and my mum.

Anyway, friday was quite interesting. They arranged a bronchoscope (did i spell this correct?) for me since the lung infection became quite apparent. What they do is they insert a fine tube up your nose, and push it down to your lungs. So the scope showed some inflammation, but in order to get some sample of that infection, they had to do a lavage (spelling?) on my lungs. They basically sucked out the phlegm from my lungs. Gosh, it was quite an unpleasant experience. I coughed all the way.

Other than that, the days went by in quite a daze. I'm either sleeping, trying to sleep, getting blood sucked out of me, sucking on orange popsicle, etc. I've got a stiff neck from uncomfortable sleeping positions. I don't know what else to do...got minyak kapak, vicks, everything of that sort on my neck already. I just wish I could sleep comfortably.

Oh, on friday, some colleagues of mine came bearing gifts from the company. I am very touched at everybody's kindness (note: should write a thank you note to office) and I will always pray for your health and happiness in life.

I'm actually feeling a bit better now...despite the temperature. I don't think i'll get out of here by New Year's though. What a bummer, coz I was looking forward to watching Living with Tigers on Discovery Channel on 31st December. I wonder if I could download the show from Kazaa or something. It looks like all I'll be watching on New Year's Eve is the Fireworks Show from KLCC.

Ok, better go a figure out a comfortable sleeping position..

HAPPY NEW YEAR!!!

a dreamy..peaceful day...

My forecast last night was correct. The next fever came at 10.55 PM. Damn I'm good!

Last night i couldn't sleep at all due to my cough. Just before going to sleep, a nurse came to give my last antibiotic for the night. And guess what? My line wasn't working anymore. So the whole traumatic event began, with the poor M.O. on call looking so sleepy and a couple of nurses standing by to help him out to look for a vein. He was successful only after his eigth try.

So this morning, my M.O. (the rude doctor) - ok, let's stop calling him rude doctor, he's actually a nice person overall, let's call him Dr A - insisted to me that he wants to insert a line hanging off my neck, or a femural line (at the top of the thigh, very near the private region). He's been suggesting these since yesterday, but neither option seemed very awesome to me. So this morning i argued with him.

"Nadia, they all semua dah pressure me to put either the femural or neck CVP on you la..." Dr A said.

"Why? They found a line on my hand already what?" I said

"No lah, they all kesian nak prick you too many times."

"Tak nak! Tak nak lah insert apa2 CVP, kan yang ni dah ok. esok kalau bunk, ni kat tangan kiri banyak veins yang dah ok. By the left hand veins bunk, we use this one on the right. Look, it's almost healed. Lepas tu doc nak masuk cvp kat femur ke neck ke..masuk lah"

"ok lah, kita tengok macam mana nanti...i takut tak boleh je"

"boleh doctor...boleh! boleh! boleeeehhhhhhhh!!!!!!"

Anyway, by the time the consultant came in, the snowball has grown. The consultant said he'll try to put another long line (monstrosity line) on my arm. I tried to argue with him pulak..hehe. But he simply told me, that we need to have a reliable line fitted so the nurses can give me my antibiotics on time for the treatment to be at optimal level. Oh, i thought...that makes more sense! So there was quite a bit of kecoh2 in my room for a few mins because the Boss himself offered to do such a simple procedure. Dr A came to clear out a bit of furniture, etc.

"i move around barang-barang ni kejap ye...boss sendiri wants to this, it is not a normal situation" said Dr A.

"yea, sure, just move whatever you need," I told him.

"Sebenarnye I malu lah, setakat nak insert long line, pun consultant kena buat.."

"alah apa u nak malu? Nobody asked him to do it what? He wanted to do it himself. Bukannya sebab u tak terer, tapi sebab I special...HAHAHA!!"

"eee perasannya.."

"Oh yes doc. nanti i nak mintak sedation sikit...boleh?"

"tengok boss kata apa nanti."

So a few minutes later, everything's been prepared and i noticed I have been sedated yet. Useless Dr A! So I said to the consultant if I could have some sedation, because it will certainly make the work easier on him if i didn't move around. The consultant said ok. I saw Dr A sniggling at the back at my relentlessness, and stuck out my tongue at him. Ahhh...5mg of sedation...it's nice. I could see what the doc was doing, could remember the pain. But I just felt so peaceful that I just wanted to lie down..heehe (i'm sounding like a drug addict, eh?) Well the long line procedure wasn't successful. My vein was too small to have the line fitted in. So the next move was the femural line.

I can't remember what time they started the femural line insertion procedures. i was semi-high from the earlier sedation. So i asked for another shot, which i got. I felt them stitching, pricking, asking me whether it's painful, saying sorry, etc etc. But after the MOs were done, i thought...hm, this isn't too uncomfortable! I have to wear a kain instead of pants, but i think i would be able to sleep better after this!

Wouldn't it be funny if after all the commotion today, my fever gets stabilized tomorrow? Just because this princess needs her comfortable sleeping positions, etc.? hahaha.. That's not going to happen though. A lung specialist came today, and she said i have a bit of pneumonia, and as long as the bug is not killed I will still have my fevers. And my low total white count isn't helping to solve the problem.

Ok better start lying down on the bed before mum comes back here. bye!

Apo nak di kato....

Monday - demam
Tuesday - demam

Based on my intelligent forecasting engine, my next fever attack should start between 10 - 11 PM tonight.

Doc said i have a bit of a lung infection. Going to do a CT Scan, then a scope to see what germ is floating around my lungs.

I'm starting to wonder if my consumption of vitagen has anything to do with this fever. it's got some sort of cultured bacteria in it, right? Because the fever started a couple of days after i took like 4 bottles of vitagen in a day..oops! Takde self-control langsung!!

I don't know what's wrong with me. As i'm writing this, I'm running a temperature of 39.4 degrees, but I feel fine. At 38, I feel like I'm not having a fever anymore. Is this normal?

OK lah. I'm going to lie down and sweat my fever out.

Comment ca va? Moi, je vais mal...

Not much to say...i can't be bothered to type too much since i've got a drip on my hand that i wish would go away.

The past few days, i've been traumatized by more docs pricking my arms to find a vein. i hate to admit this, but at times like these, i kind of miss the CVP. and to think that I started to have the fever the day after the CVP was taken out.

Since thursday..nothing much happened except for recurring fever until today. Temperature went up to about 40 degrees. I feel a bit better today, since they've stopped the Ampho-B medication which I hate.

Just recovered from another bout of fever. Going to sleep now. babai...

Alf...and Dr L (parts 2)

Alf is fine. The vet said she has a fever. So she had to stay a couple of nights at the vet, since the fever was fluctuating and they wanted to monitor her progress. It sounds exactly like my situation these past couple of days. Is it possible that Alf and me have some sort of connection? Anyway, I hope she gets discharged today. At 50 bucks a night, I don't mind becoming a vet myself. They seem to make loads of money! RM 90 for a blood test? I'm sure human blood tests cost less than that..or if it's not, at least we've got insurance. Z once took his cat Salim to the vet for some kidney problem, it cost him almost 500 bucks! Is there pet insurance in Malaysia? If not, someone should start it up. I think it's a good idea, because I read somewhere that the pet industry is one of the fastest growing industries in this country, worth more than RM500 million or something. So with the growing number of pet lovers, I think pet insurance is worth the thought.

On to Dr L. Found out what happened to him. Mum asked one of the nurses of his whereabouts a couple of days ago. The nurse said Dr L changed to another hospital because he doesn't like it here. According to the nurse, he said that a few of the nurses here are too loud and it scares him. Dang nurses! Go make noise somewhere else!! The nurse added that it's too bad he left since it's rather difficult to find someone of his caliber. Too right! Yesterday morning, the MO complained about why the nurses could not fix a new line for me when there was an obvious vein available. I asked him, "but isn't this your job, doctor?" He shut up right away. Gosh! Itu pun nak complain...buat aje lah!! Lazy ass betul!

I'm still having fever..although they are not as horrible as the fevers I had after my second chemo cycle. Doc said I may get to leave by next week. Hope he's right. Yahooo!

Something I wrote a few days ago...

When I was a kid, I always envied my friends who had all the cool toys. One of my friends had like 20 Barbie dolls, complete with the Barbie house, car, clothes and everything else that could possibly come with it. She also had a computer. A family friend of ours used to have the kids' birthday parties at cool places like Kathy's Toys in Jaya Supermarket, where we could all go on the rides for free. Neat stuff!

What did we have? Nothing other kids would envy. We had some Legos, a set of encyclopedias and bicycles. I had one Skipper doll. So most of our childhood days were spent on make believe games, like "masak-masak", "cikgu-cikgu", "doctor-doctor", etc. The usual games kids would play, and most of the time we didn't have the proper equipment, except for when it came to playing "doctor-doctor". We had proper syringes, in many sizes!

My dad used to bring home syringes from his clinic. We had a stethoscope and a doctor's coat at home. There were 4 of us, so there would be one doctor, a patient and 2 nurses. Most of the time we would fight because there were 3 boys and myself, and no one wanted to become the nurses. We sometimes pretended that we were conducting surgery, like the time my youngest brother's favorite teddy bear's arm got ripped apart while we were bullying him and we had to sew it back. Or the time when the third brother became the patient and we told him that the birthmark on his face was dangerous and had to be removed. We used the syringes when we needed to "inject" anesthetics or medication (water) and "withdraw" blood (air sirap). No needles, of course! It's unbelievable, after all that time we spent playing doctor-doctor, none of us have become doctors so far. Instead, three of us are now working in IT, and the youngest is still in school. I guess there is still hope for dad, although I wouldn't put too much hope. :-)

Anyway, when we got tired of playing doctor-doctor, we found other uses for the syringes. One of my brother had the cool idea to draw drinks (like air sirap) into a syringe and drink from it. Or we would try to shoot the drink into each other's mouth and made such a mess. Another time, we wanted to play water guns but didn't have any, so we used the syringes as water guns and had so much fun with it. Of course the only problem was that our "guns" had to be refilled after each shot.

Ok, enough already with the syringe stories, you say. Well, it's just that seeing syringe after syringe everyday now suddenly reminded me of my childhood days, when syringes were fun toys instead of something that causes me physical pain from the daily jabs and blood sample drawings..Oh well, I suppose it's the pain one has to go through to get better.

Alf...

Mum says she'll be a bit late today. Alf, one of my cats, is sick, so she's going to the vet. We don't know what's wrong with her, but according to my mum she's been lying in the cage since a couple of days ago. She's the queen of climbing rooftops, and everybody got a bit worried when she started becoming inactive. I hope it's nothing serious.



Myself, I had a fever the whole of yesterday, and today. Hope the fever goes away soon. My white blood cell count is coming up, so I may get to leave the hospital in a week or so.

YES!!

Listening to : Siti Nurhaliza - Seindah Biasa, Winter Sonata - My Memory (Piano Instrumental)
Reading : Starcraft's Protoss Mission 9 walkthrough

Doc said he's happy to see that my counts are coming up, although he won't be too happy if it comes up too fast.

And the CVP (the monstrosity on my right arm) has been removed! Woohooo! It wasn't working properly last night and my arm was aching, so doc said I could have it removed since I'm not on i/v antibiotics anymore. The only thing is that he reminded me to drink lots of water since there won't be any natural saline helping to hydrate my body. I said I'll try. Drinking enough water, along with eating veggies, is one of those good habits I have yet to develop.

'til later, alligator.

p/s: forgive the colors, I just found out how to change text colors from the blogger interface. how cool! hehe

I crave for Vitagen

Reading : Dude, Where's My Country? - Michael Moore
Listening to : James Ingram - Just Once, Misha Omar - Dedebu Cinta, Gareth Gates - Sunshine

Once in a while, I get a craving for Vitagen. Any flavor except apple (the green one, ugh). The last time somebody brought me some, I drank five bottles in one sitting. Why do they have to make the bottles so small? I'm looking forward to some Vitagens today. Yummm...

By the way, Gareth Gates' Sunshine is such a mood pickup song. Did I get the sentence right? I just woke up and am not thinking v straight.

Oh, to gamers, is World of Warcraft out already? My friend told me that people were raving about it. Anybody tried it yet?

whatcha gonna do about it
whatcha gonna say when I say
baby it's just one of those days
whatcha gonna do today

can't you see that i'm smiling
baby there is just no denying
'coz the sun is shining
whatcha gonna do today

- Gareth Gates, Sunshine

Ciao tutti :-)

A better day indeed

God answered my prayers for today to be a better day. I woke up with a clearer mind. It dawned on me that I may have jumped into some conclusions yesterday. It's complicated to explain, but I'm glad that I may be wrong. I shall wait for the official report.

It still doesn't remove the fact that things have been getting more difficult for me. But at least there is still hope for a donor, yea?

Huh, yesterday was quite scary, though.

Ciao.

Worrying about tomorrow DOES take the goodness from today

Bleak day today...I had a look in my file, there was an unofficial note from the lab, of the HLA Class II typing for me and my brother. There is no match. I recall the consultant saying that a Class II match is important for a bone marrow transplant. I told myself, it's only an unofficial note, there could be a mistake, and I should wait for the official report. But official or unofficial, it's the content that matters. Unless the nurse who took the note down was deaf or illiterate, i don't think there'll be much of a difference.

So what will this mean to me? Is there hope? I didn't know...so being the curious smarty pants, I grabbed the Manual of Clinical Hematology on my desk and started reading. Here are some quotes from the book:

"Patients who have a relapse after a short first remission or refractory AML patients who never attained a complete remission following standard therapy, known as primary treatment failures, are best entered into experimental clinical trials." (pg 220)

"Another optional treatment regimen for refractory patients is allogeneic BMT if a compatible sibling donor is available." (pg 220)

From the table "Anticipated patient outcome using autologus and sibling-matched allogeneic transplants in malignent disorders in adult patients" (pg 407)
Disease - AML
State - Primary refractory disease
Allograft (sibling donor) - 10% cure
Autograft (own stem cells) - rarely performed

I was initially diagnosed with AML M4, then refractory AML when I did not respond to the initial standard chemotherapy. It looks like things are getting more difficult for me. It started as "don't worry, leukemia is now one of the most curable cancers these days" to "there's a possibility that I don't have a donor and autologus transplants are rarely performed on refractory AML patients." Why oh why did i ever open that book??!!

Tomorrow I'll ask the doctor about it. To be honest, I'm kind of scared. I'd rather not worry about it, but dad says that HLA typing is a very sensitive test, so maybe we could repeat the test on all my siblings, just to be sure. So the sooner I ask the doctor the sooner we can repeat the test and get the results.

In the meantime, I'll just try hard to not think about these trying times. Maybe another session of Starcraft will help me gain some peace of mind. I'm feeling bummed out, but I will not give up. There must be a way that I can get better, sooner or later.

The good news is that I still haven't caught a fever and my cough is getting better.

Hope tomorrow will be a better day.

Over and out.

of pets, money and doing things my way

One of the things I hate most about being stuck in this hospital is not being able to take care of my cats and finances. I just hate asking people to help me pay my bills and loans, help me put money into my savings account, etc. It's not that I don't trust people handling my money, but I just absolutely prefer to do it myself. I like that I know each payment's level of urgency so I can make the payments accordingly.

These couple of months, all I do is write cheques in large amounts, hand them over to people who would help me out and just trust them to manage the payments for me. The worst is having to ask whether it's been done or not and making people feel like I don't trust them with my money. It's the same feeling you get when someone borrows money or an item from you, and you have to ask for it back from them. Ugh!

Then there are my cats. I have to trust my brother to buy food and litter for them while i'm away, take them to the vet for medication, etc. He's the only brother who would help me out with the cats. Unfortunately he's outstation most of the time. He recently took the one cat to the vet due to skin problems. Came back with some creams and antibiotics which cost me RM80. Then he had to go away for work. Now what's the point of going to the vet if no one's going to give the poor cat its medication?

On some days, just thinking about these two things makes me want to escape from this hospital..But I haven't figured out how to get rid of this monstrosity on my right arm. Plus I only have 60 cents on me, so I don't think it will get me far from here. Intrakota costs at least 70 cents per ride, no?

Ciao tutti!

p/s: to them kind souls who have helped me, I greatly appreciate it. My sincerest apologies if I kept calling every 12 hours to ask if the payments have been made. They were quite urgent, you see. :-) You know I would do it myself if I could... And to my dearest brother, PLEASE GIVE COOKIE HER ANTIBIOTICS ONCE YOU GET BACK HOME!! AND TOLONG JANGAN JAHANAMKAN MY CAR, YOU POSER!! Thanks.

il giorno 15

Listening to: Kaer - Epilog Cinta Dari Bromley, Craig David - Spanish, Anuar Zain - Mungkin

Woke up at 2PM today. Realized that my mum wasn't here yet and wondered why nobody called me. Checked my phone and found out the battery died while I was sleeping. Cursed myself for not taking an extension cord with me when I checked in. Charged my phone, received an sms from mum asking me to save the rice. Fuhh...mum's coming to bring me food after all. I didn't eat this morning, they served porridge which i'm not so into.

Yesterday was a trying day. Trying my patience that is. My Hb level dropped to 7.9, so the doc ordered 2 pints of blood for me. I had to buy this RM70 blood transfusion filter, which was a pain in the ass (the filter, not the fact that I had to buy it). A pint of blood is supposed to get transfused within 4 hours. But mine took almost 9 hours!!! Stupid filter!! Started the first pint at 6AM yesterday, and finished the 2nd pint at 4AM this morning. The filter kept getting jammed every half an hour. So all day yesterday I had to watch the drip set, in case it stopped flowing. You know the expression "like watching paint dry"? In my case, it was more like watching blood drip.

Doc came in for his rounds, asked me the regular question - if i had a fever. As long as i don't have a fever, he's not too worried. He said it'll be about 2 more weeks before I will fully recover. I sometimes don't get this doc..a week ago, he also said I have 2 weeks to go. Is this guy for real?

Anyway, every now and then some people ask me, what's next? Well, usually after getting FLAG-IDA treatment, most patients go for bone marrow transplant. Which is what the doctor has in plan for me. I try not to worry too much about what happens after this, but three scenarios could arise (ones I could think of):

1. I go into remission and I have a bone marrow donor
2. I go into remission but I have no bone marrow donor
3. I don't go into remission

Obviously the first scenario would be the best case. In the second scenario, I think I could use my own stem cells in place of the donor (of the lack of it). As far as the third scenario, I haven't had the guts to ask the doc what will happen. I remember the doctor saying that 70% of patients respond to conventional chemo, 15% will respond to FLAG-IDA, and the other 15% will never respond to any sort of chemo they get. I'd rather not worry about it now. I read a saying somewhere "worrying about tomorrow takes the goodness out of today". So i'll just take it one thing at a time, and for now, my focus is to recover from chemo. And pray hard that the blast cells will go away. :-)

Aiight fellas, off to playing Starcraft. (After a short-lived ambition to start working on my MBA thesis. Ha ha)

arrivederci.

Break!!

How am i? Same old, same old. I've taken to waking up as late as possible to make days feel like they are moving faster. Due to my low platelets, I am starting to bruise everywhere. I'm on Day 12, which means I have about 16-18 more days to go. I'm hoping that it will go well right through the end of my stay in the hospital.

Nothing else is new, so let's take a break from reading about my daily health condition and check out http://www.the-kimster.blogspot.com/. The Kimster, a dear friend of mine, is an amazing writer. I have always wished I could write like him, full of thoughts and ponderings. But then again, I was never really the "pondering" type of person, so let's just leave the pondering to The Kimster, shall we?

I miss my cats - Mr Frodo, Owen, Alf & Cookie.

Adios muchachos!

Huh, finally...

Spent the whole day trying to finish the last chapter of Starcraft's Terran Campaign, between visitors. I finally did it! hahaha (reading the walkthrough helps a lot kekeke...). Tried to continue with the Zerg campaign, but felt lazy...maybe tomorrow.

Going to get platelets transfused tonight...my platelets dropped to 5,000 today. Thank God i'm not bleeding anywhere.

Ok, short entry today...I'm sure half of you don't even know what I was rambling about on the first paragraph.

Me gonna go watch The Sopranos season 2 now.

Ciao miei amici.

Day 10

So far so good, no fever yet. Cough and cold still not gone yet.

My blood count has started to drop tremendously. Yesterday's count:
White blood cells - 0.06 (normal 4.0 - 11.0)
Haemoglobins - 8.5 (normal 11 - 16)
Platelets - 28,000 (normal 150,000 - 400,000)

The specialist, Dr O, was happy to see this drop. The surgical mask has become my new best friend. And the medical officer got a "HOII!!!" from me for coughing around in my room this morning. What was he trying to do, infect me with his germs??

Dr O said the counts will stay low for about 2 weeks. Looks like I'll be Starcraft-ing my days away until I recover.

Am a bit bummed out because Z has started his new job and won't be able to visit me as often.

doctor doctor, where art thou?

It's been a week since I've heard the cheerful "good morning!" from Dr L, the kind doctor. I have no idea what happened to him, probably rotated to another ward or hospital. He's been replaced by the rude doctor, who turns out to be not so rude in the mornings after all..

I remember my first encounter with Dr L. I had a fever, and he came to do my blood culture. We didn't catch his name at the time, so my mum nicknamed him Dr Comel. Well, he is kinda cute, although that is not the point I'm trying to make here, hehe. He then replaced the previous MO, and started visiting every morning. I don't know how he keeps up, but he always has all the relevant data in his head everytime the specialist asks for information, e.g. blood count, chest x-ray, etc. And there are about 15 patients in here. The concerned look on his face makes me feel cared for, as if he worries for me, and that I'm not just another patient he's attending to. No matter how busy he is, I am always made to feel like I am his only patient. Some conversations are still crystal clear in my memory:

Conversation 1
Dr : Hello, are you feeling better today? Any more fevers last night?
Me: My cough is still not gone la doc...
Dr : Hmm, can I offer you some gargle then?
Me: Yeah, ok. Thanks. (wah...was he a waiter before this?)

Conversation 2
Dr : Hi! Haven't gone home yet?
Me: No, I was waiting for you. I thought I'm supposed to sign something before I leave
Dr : Eh no need la, I took care of it for you long time ago already...
Me: Aiyorr!! And I waited for you for the last 1 hour! Ok la..I'll be on my way then..
Dr : Ok. So are you comfortable here in a double room? Would you prefer a single?
Me: Of course la I prefer a single! But it's occupied now, right? What la you...thanks anyway!
Dr : Hehe..that's true. ok, you're welcome.

I won't bore you with more details. I trust him (95% of the time, because he is still learning), and all I know is that any pain I feel doesn't seem too terrible when he was taking care of it. I know he will be an excellent doctor throughout his career. You can learn all the stuff in medical books, but the people skills, you just have to have it in you. Maybe they should start stressing the subject in med school.

Dr L, wherever you are, thank you and good luck! Wish you were back here.

Day 7 of 28

Am on Day 7, 2 days post chemo. Circa 21 days to go before I can go home. I moved to a single room today. I was actually starting to enjoy the double room. I had the double for a whole week to myself, which was great. But this one's fine too..I'll just have to stow my laptop in the bag everytime I finish using it. So far I'm doing good, no fevers yet, but still some cough and cold which started even before chemo. At the moment I'm munching on some kuih raya, the lunch served today doesn't seem to be too appetizing. My appetite has diminished lately, as a side effect of the chemo. I crave for food with strong taste, e.g. spaghetti, pizza, burgers, etc. mmm...a pizza neapolitana would be nice for now....yummy. or Baked ziti with loads of cheese (I am watching too much of The Sopranos, as you can see)

Anyway, with regards to the previous post, thanks Najah for the clarification. I don't think anyone's trying to take advantage of C though. The malay guy gave the water in return for C's kindness in sharing some of his herbal drinks. I've seen some weird things here though. A couple of weeks ago, I had an Indian for a roommate. One night a preacher came and talked to her. Sounded like he was preaching Christianity as the solution to my friend's disease. I thought, "and her mother allows this?? my mom would smack me on my head if i ever attempted such things." Oh my, I couldn't listen to what was going on, so I left the room shortly after realizing what was going on.

I had a Manual for Clinical Hematology book on the table this morning. Yeah, to impress the docs. Hahahahaha. One offered to buy it from me at second hand price. No way!! Get your own! One said he's having trouble understanding what the book says (oh-oh...should i be worried? thankfully he's not yet a specialist). Myself, I read the book like a 2 year old trying to learn her ABCs. hehehe...slowly lah, kan. It took these specialists years to become good at what they do. Surely I can't expect to understand everything in just a few days. With the help of a dictionary, I'm sure i'll master it in no time :-).

Ok lah...going to find some other things to do to get through the day. Things are a bit boring since I'm not encouraged to leave my room. At least if I could go outside, I could make new friends and chit chat with the nurses. Unfortunately I'm not here to make friends, I'm here to get better. So i'll just stay in this room, and munch on more kuih raya.

Au revoir!

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, woi....lu 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: Oh...like 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 back...it 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 mobility...so 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 ward..so 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!

hello!

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.

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!

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.

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!!!

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...!!

Adios.

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..

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!

Bye bye Mr Hickman...

Today has got to be the most depressing day since i got diagnosed. Yes. My hickman line dah al-marhum. Gone. Yanked out of me like some poisonous snake. I tell you, it's even more depressing than being diagnosed with leukemia itself. Just thinking about the next few days of being poked with needles for blood samples is enough to make me cry a bucket of tears, which l did. But the doctor had no choice. I was running fevers of 39+degrees 2-3 times a day, for 10 days in a row, and they couldn't find the cause (e.g. No bacteria found in my blood cultures, no diarrhea, clear chest x-ray, in short, no sign of infection). In the end they concluded it must be the line causing the fevers, although there are no guarantees.

My eyes are now swollen from crying over the loss all morning. My left hand is also now swollen from water retention. It's more difficult for me to move now, but i hope it's only for the next few days before i get to go home.

Well, I guess what's done is done. Doc reassured me that the line can be reinserted later, although I'm not sure how soon. My biggest fear is that when I go for my next chemo, I don't have my Hickman's line with me. I will be like a Jedi Knight without his light saber. They say if the chemo medicine touches your skin tissue, it can leave some unsightly burns/scars. Let's hope that doesn't happen though. Or better yet, hopefully i will not need a next chemo.

I'm still depressed. No more walking around with the Rm4500 worth of convenience. I still can't see the bright side of having my new best friend detached from me after only 2 months. Maybe tonight i'll come up with something positive about all this.

Now i wish my eyes would stop swelling. The nurses here must think I'm such a big baby for crying over a lost line.

Arrivederci.

Chapters of life

Still having high fevers. It's now the 8th day I'm having chills, followed by high fevers. The chills are terrible, uncontrollable, teeth-grinding shivers. When the shivering stops, my body temperature will rise and rise as if it will never stop. The headache feels like my skull has been axed open. It's like being transported from Alaska to the Sahara...i imagine.

OK, let's not talk about my fever anymore. Writing about it won't make them stop, anyway. While having these episodes, my activities were limited to either sleeping or thinking. The one thought that kept coming to mind was if i could re-live a period of my life, which would it be? Not that I wish to live them differently, but because they may be the happiest years of my life so far. So here are the verdicts:

• Pre-school years: not much memory
• Primary school yrs: maybe
• Form 1 - 3 in boarding school: Not in a million yrs!! Those were the worst years of my life ever. Can't stand those patronizing seniors...
• Form 4 - 5 in boarding school: maybe. If i get paid rm5 million..
• Pre-college year: yes! Free trips to disneyland,san diego zoo,etc.
• College years: Absolutely yes!
• Working years: hmm..too recent. Will consider it in 5 years time.

Back to college years. It occupies my thoughts quite a lot lately. When I'm having the fever attacks and try to think happy thoughts, my college years always pop to mind. Perhaps it's the cold Pittsburgh weather. I'm reminded of the days we built snowmen behind Baker Hall, me trudging snow to get to class, shopping and eating gelati down Walnut Street, finding knick knacks on Squirell Hill, eating baked ziti with loads of cheese at the University Center and oh so many more. I badly want to list everything here but there are just too many. There I am feeling feverish in bed, and suddenly i get a flash memory of me and friends having Chinese after a game of street hockey. Or me and friends shooting silly videos because we ran out of things to do during winter time.

Ah, sweet memories. Maybe when I'm better I'll take a trip down memory lane to Pittsburgh.

Is it like a computer game?

Another thought before I go off to bed. I like to think of me fighting this disease like I'm playing Warcraft III. I'm fighting all my enemies (e.g. the leukemia cells), and in fighting them, my army will also die (e.g. my normal blood cells). The good thing is, I can rebuild the army, and keep fighting the enemy troops until I get to move to the next stage. And finally, I will get to the ultimate stage, the grand finale, the bone marrow transplant. It will be very difficult and my army must be strong, but once I finish that stage, the game will end, and I will triumph. I just hope I don't give up like I did in Warcraft III, where I had to collect 15,000 timber at one point and just couldn't bring myself to cheat...boo hoo!

Well, is it weird to think that I'm cheating the "game" when they have to transfuse blood and platelets into me? The thought came across when they gave me a bag of platelets yesterday. It's like typing /ihavealltheplateletsintheworld at the command prompt and it will solve the problem.

Err..ok, I really think it's time for bed now. I'm starting to sound like a geek. Bye! (Now i'm thinking whether Warcraft III works on this notebook...hmm that would be nice)

It's like a bad dream...

The past couple of days have been rather hellish. My total white blood count was 0.5 (avg 4.0-11), and platelets dropped to 16,000 (avg 150,000-400,000). I had constant fever up until this morning. Shivered all the time, and vomited after meals. I mainly just slept it out. At least when I'm sleeping, I dream of the days when things used to be normal. Like yesterday, I dreamt about going to work, getting confused about the tasks I'm supposed to do and then later having buka puasa at a restaurant and got mad at the waiter for such slow service. How I yearn for those simple things now.

Anyway, I had some thoughts about things I like about being in the hospital, and things I will look forward to when I'm better. Here's a list:

Things I like about being in the hospital
- getting to watch DVDs
- getting to read stuff I otherwise would rarely read when I was well (e.g. papers, qur'an, etc)
- the agar2 sirap they serve every dinner time (otherwise only available at pasar ramadhan)
- getting people to fuss over you (although can be a bit emotional at times)
- using Yahoo! Msgr without worrying that you have work to do in the office

Things I look forward to
- having buka puasa with my friends, after buying kuih at pasar ramadhan
- growing my hair (I'm thinking Anita)
- go watch movies
- going back to work (I must say this, in case my boss reads this)
- having lunch with colleagues at Santini's KLCC on Fridays
- those are just a few, but i basically want my normal life back, plus some changes towards a more healthy and spiritual lifestyle.

Since this morning, I had no fever, thank God. Strange, the fever subsided once I heard the doctors say "let's wait another day, if the fever persists, we'll have to remove the Hickman's line." Hmmm, I guess it's a case of mind over matter after all - On top of the variety of antibiotics I'm perscribed with, e.g. Ampho B, Sulperazone, Vanco & Tienam. If the Hickman's line is removed, I'll have to have those lines on my hands, which I cannot stand. Life will be much more difficult, in terms of moving and sleeping recklessly at night, and of course, using the computer. (NOOOO.............!!!!!!!!)

It's now 10.10 PM, so far no fever. Let's hope this continues....

I'm after watching Monk, DVDs courtesy of team GGK (thanks guys!!). So now i'm off to bed..ciao!

p/s to team GGK: I've only used the scarf, this room is so cold, plus when I get the chills, it feels like Alaska in here. snow cap not yet...maybe soon, hehe! I'll send u a picture nanti. I also think I might borrow some snow caps from Zahid.

Back in the hospital

Turned out from my bone marrow test, there are still many blast cells showing, which means i'm not in remission. So the doctors decided to start me on my second cycle of chemo, using idarubicin and high-dose cytarabine, for a course of 4 days. Before I started chemo, I had to have 2 pints of blood transfused, since my hemoglobin was on the down trend. Gee...maybe after this i'll just change my career to Vampire. Sorry Maya Karin, if after this u cannot cari makan. Hee haaahahahaahahahaa (vampire-ish laugh). So now I'm already on chemo day 3. So far I'm feeling fine, no side effects, other than my hair which continues to drop. I've started wearing scarves (a la Awie) because I cannot bear to see the hair thinning process on my scalp. I know...i know...it will grow.

Emotion-wise: When the doctor told me that I'm not in remission, I was not too shocked. I read somewhere on the Internet that sugar feeds precancerous cells. During my first course of chemo, I did consume a lot of chocolates, took sugar with my juice, etc. I admit that I felt a bit down, but hey, hopefully this next round will make it better, eh? I saw a hint of disappointment in the doctor's face, but didn't ask why. Surely doc didn't expect me to go into remission after the first cycle? Doc was the one who told me that patients usually take 2-3 cycles before the go into remission. Oh well..I will tell myself everyday that this round I will go into remission. I will, i will AND I WILL!!!

Tomorrow I'm moving to a single room, which means i get to watch my dvds without wearing headphones. Yay!! I'm a bit spooked though, a nurse told me that the patient who was in the single room just died...*gulp* Maybe I'll get mommy to stay with me for a few nights...hmm

Adios per il momento. Ciao tutti!

Still home

I'm still at home. Watched TV all day. Didn't have to stay at the hospital since the bone marrow test won't be until wednesday morning. Since there were no first class beds today, the doc decided to let me go home. Admission gave me a 2nd class bed, which meant it would be better for me to stay home. Yeah, I sound like a snob, but I dare not take any chances.

Anyway, looking at the 2nd class ward today, I realized how lucky I was to have gotten into the 1st class ward previously. I felt like bursting into tears when I saw the condition of the ward. On one hand, I thought, "God! there's no way I'm sleeping here tonight...eww! I have to share toilets with 30 other people!!" On the other hand, if the patients in this ward can fight their battles...i definitely can fight mine, Insya-Allah.

Hope I get into a first class ward on Wednesday. I promise I won't complain about the air-conditioning being too cold anymore!!!

Cat Update (Haven't done this in a long time): Owen, my handsome orange cat has got a new collar. After the old one snapped when he got too fat and no one checked. His new collar is flourescent pink!! I think he may have cried a bit the first day, he kept tugging at the pink collar. The color wasn't my idea, but I do hope it would bring some feminine qualities for Owen. Owen is too independent, he likes to play on his own. Maybe one day he'll start rolling at my feet like Mr. Frodo, Alf and Cookie do. Hmmm..

Packing Time

Ok, I've got to pack my computer, since I'm going back to the hospital early tomorrow morning. Before that, let me tell a little story about my disease. I've got Acute Myeloid Leukemia (AML). I was diagnosed on 9th September, 2004. There are 7 types of AML, but there was a little problem between the doctors and the lab, they weren't able to determine whether I have AML M2 or AML M4.

I felt unwell for about a month before that. It was gradual, but towards the end, it got worse. I had intermittent fever, loss of appetite, short of breath, easy bruising, etc. Friends told me I looked very pale, but I thought it was just normal stress. One day I went to the doctor to get some cough medicine, the doctor realized I looked very pale, and asked me to do a blood test. The blood test results showed that there were blasts in my blood, and suspected me to have acute leukemia. That day was 3rd of September, 2004.

Anyway, I was admitted to the hospital the same day due to my low hemoglobin count (3.6). I had 4 pints of blood transfused in me. I remembered being really tired, I wasn't able to talk properly. I got my first ever ride on a wheelchair that day, and it was quite a fun experience. Although given the choice, I would rather be well than unwell.

A few days later, I went for a bone marrow aspiration. My God it was a painful experience!! I felt like I fell on ice for three days! I felt cheated...when I asked the doctors, they all said that it would be a short procedure, just like tooth extraction. Anyway the results came out positive (nothing positive about that from where I stand!), and the doctor said I should start chemotherapy right away. However, the doctor suggested that I go to another hospital to get a catheter called a Hickman's Line put on my chest. The line would be used for chemotherapy, to transfuse and withdraw blood. It would be more comfortable for me since the nurses won't have to constantly poke my hands with needles.

My first course of chemotherapy went well. I was given 3 days of daunorubicin and 7 days of cytorabine (Ara-C). Only the first day I vomited. After that, the doctor prescribed me with Kytril to control the nausea and vomiting. Other than that, I ate well, no diarrhea, no mouth sores. The only thing that bothered me was the steroids. It made me look puffy! During this time I also took Lingzhi pills (thanks to my aunt) and Brands Essence of Chicken for my blood.

The first week after chemo passed by in a whizz. I watched movies, read books, etc. Basically the most boring week in the hospital, since I felt well, but was not advised to have many visitors. My blood counts started to fluctuate during this week.

The second week was quite difficult. I had fever three days in a row...and felt quite bad. The doctor decided to prescribe me with some anti-fungal medicine. Apparently patients who stay in the hospital for too long tend to catch hospital fungus (euww!!). My white blood count fell to its lowest - 0.9! However, it gradually went back up after that, and the doctor discharged me at WBC of 1.4. (Healthy range for white blood cells is 4.0 - 11.0) I was excited, but also quite worried since I have cats at home, and God knows what other bacterias and viruses I could catch at home. Anyway, I risked it since I couldn't wait to get in touch with the outside world (a.k.a the TV!).

I also started shedding hair during this second week! It was horrifying to see my long hair all over the floor! I decided to wash my hair one day, and it just got tangled together, making it worse! I got my brother to come later that evening to cut my hair shorter, and I felt much better! ADVICE to people who will go for chemo - just cut your hair short before you start treatment. It would be easier on you. I also read that if you take 1600 IUs of Vitamin E everyday for a week before starting chemo, u could minimize hair loss (way too late for me!!) I'm thinking of writing a letter to Erra Fazira to see if she could donate me one of her many wigs. Whaddaya think? I thought of writing to Siti Nurhaliza as well, but her wigs are usually long ones, so it probably won't suit me. heheh.

The week went by very fast, and I have to get myself re-admitted tomorrow. Me and my siblings will do the HLA Typing tomorrow, to determine if one of them is a suitable bone marrow donor for me. Then either tomorrow or Tuesday, I will have to do another bone marrow aspiration, to see my progress from the first course of chemotherapy. I hope the results will be favourable...(pleaasseee God!!!)

If nothing else, this experience has brought me closer to my parents, whom I love very much, and I know are very worried about me. My friends and colleagues, who check on me from time to time, and feed me with gossip, they keep me going. And the lovely Z, who gives me his endless support, and endless supply of DVDs.

But, this is just the beginning of the battle. I know I have a long way to go (hopefully not too long!) before I can live a normal life again. I pray to God to make me better, or at least make this battle not too difficult for me.

Will update, as and when. Ciao tutti!

Home time

Last monday i finally got to go home, after being in the hospital for almost a month. Today, I went back to the clinic, and the doctor said I have to get admitted back next monday. They initially told me I could go home for 2-3 weeks. It doesn't look like it now..the doc wasn't very happy with my blood count, plus the doc won't be around the following week to do some tests on me. Oh well...i had a happy week at home, got to see my cats, and was able to control the room temperature. The hospital room is wayyyy too cold, sometimes I can't tell if i'm having a fever.

May be I'll start blogging about my journey in fighting this disease. Could probably share some views with others going through the same problem. Hmm...

Ciao for now.

News from a hospital room

I've now been warded for a month. Finally figured out how to connect to the Internet via GPRS. It's so bloody expensive!!! 1.5 sen/kb...there's got to be a cheaper way to do this..

Anyway, after being in here for two weeks, I developed my own routine. E.g. wake up (earlier than if i were to wake up to go to work, and that's only because the darned sweeper has to come in at 7AM to sweep the room), wash my face and brush teeth, eat, then read a book or meddle with my PDA until the doctor comes. After the doc leaves, I will finally get to start my day. I shower, make myself pretty (for what, i don't know), take my supplements, then catch up on outside world gossip via Yahoo Msgr. Then I have lunch. After my mum leaves, I pick a dvd and watch it. It takes a good 2 hours, which brings me to about 4Pm. Then I nap, or read. My parents comes back at about 6PM, and we eat dinner. After that I read the newspapers. After my parents leave at about 9PM, I watch another dvd, which takes me to 11PM, after which I go to sleep. This is what I do everyday, unless I catch a fever, where all I'll do is lie in bed, willing myself to feel better.

I'm now on day 21 after the start of my treatment. I hope to get home sometime next week. Can't wait!!

Bye for now.

sudden disease

i was diagnosed with a blood disease this week. it will take a while to cure. many things will have to be postponed, e.g. my work, my studies, my life. i guess my life now is to focus on getting better. ppl have advised me to be strong, and i will be. the only thing that kind of ticks me off is when the same people keep telling again and again to "berselawat banyak2 tau tak!!", with a look as if i don't. Just because i try to act normal, laugh and smile, crack my stupid jokes, it does not mean that i'm not aware that i'm sick. I am fully aware that I'm sick. I ask for help from God in my own time. Those people don't need to see the tears that run when i ask for God to give me strength to go through this ordeal. Just because I look happy despite having a disease, it does not mean that I forget to "berselawat" to God. I am just trying to be strong, for God's sake. I guess what I'm trying to say is Praying to God is not equal to Looking Sad and Too Uptight.

guess i will not be blogging too often now (as if i blog everyday now, anyway, haha.)

wish me a speedy recovery. thanks.