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.
Thursday, December 30, 2004
Tuesday, December 28, 2004
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?
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.
Al-Fatihah.
Monday, December 27, 2004
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!!!
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!!!
Wednesday, December 22, 2004
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!
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!
Tuesday, December 21, 2004
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.
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.
Sunday, December 19, 2004
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...
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...
Thursday, December 16, 2004
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!
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.
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.
Tuesday, December 14, 2004
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.
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.
Sunday, December 12, 2004
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
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
Saturday, December 11, 2004
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 :-)
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 :-)
Friday, December 10, 2004
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.
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.
Thursday, December 09, 2004
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.
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.
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.
Wednesday, December 08, 2004
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.
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.
Sunday, December 05, 2004
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!
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!
Saturday, December 04, 2004
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.
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.
Friday, December 03, 2004
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.
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.
Thursday, December 02, 2004
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.
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.
Wednesday, December 01, 2004
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!
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!
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