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...