Saturday, July 30, 2005

happy saturday!

I don't know what got into me yesterday! I just wanted to sleep. On the several occassions that i had to go to the toilet, my mum had to help me up and half carry me to the toilet. It went on til around noon today. I don't know what it is, because doc already turned off my benadryl, flu tablets and morphine.

I can eat properly now. But i sometimes just refuse to eat since the food is so yukky!

Oh, today is also the death of my 2nd Hickman line. There was some redness at the exit point today. My first one died last October..I can still remember how upset i was. But today's removal was rather unemotional, since i was very uncomfortable with it since day one. The line was planted very near my breast, making wearing a bra quite impossible for me. So tata Hickman, you've been very helpful, but i'd rather live without you this time.

Ah! I finally moved to the Post-transplant ward. My platelets are still low, i'm getting daily transfusions now. My total white went up some more to 2.2 today. So i hope it won't be long now. Maybe 3-4 days to home sweet home!

Thursday, July 28, 2005

Credit Card Fraud Part 2

I was happily gossiping my morning away with some friends on Yahoo when I received a phone call from a bank. Citibank this time. The officer called to tell me that my card is suspected to have been cloned and will be cancelled today. WHATTTT!!? First my HSBC, then my CITIBANK? Both in the same week? Bugger. But let me tell you, this isn't the first time my Citibank card got cloned. Since I became a cardholder in 2001, my card this is probably the 4th time they cancelled it because of suspected cloning. Yes, that's once a year of going through the hassle of changing the info with all the direct debit merchants, e.g. Maxis, WWF, Insurance, despite Citibank's constant reassurance that I will never need to worry about that because it is "automatically done." Well, if you call my everyday being harassed by ING and WWF and Maxis because they could not charge my non-existent account, and having to refill authorization forms "automatically done," yes it is then definitely "automatically done" indeed. By a very irritable person called MYSELF. I don't know why my cards get cloned so many times. I don't believe I'm an Internet shopping whore, except for the odd book and dvd orders from Amazon every few months or so. Just not my luck perhaps.

Day +17
Today feels just like yesterday. Didn't eat as much as yesterday because i thought the food sucked. Yesterday's probably sucked as well, but after not eating for four days, anything would probably taste good for me. Mild sore throat still. Fever gone. Cough and nasal congestion improving rapidly. My blood counts today are as follows: Total White Count 1.1 (wooohooo!), Hb 10, Platelet 17 (having another bag transfused now, thank God for blood donors).

So, I believe the worst is almost over for now (have I said that yet?). Although when I reflect on the events that transpired in the last week, I think I could've handled it much better than I did. I only suffered for 6 days, while many others couldn't eat up to 2 weeks. Haha, sekarang boleh la cakap, but when I was going through it, it sure felt like it was the most painful thing in the world. God has been good to me, alhamdulillah. One thing I don't like, I'm so bloated. My face is so puffy. I woke up this morning weighing 65 kgs! How did i managed to go from 57 to 65 within 21 days? I blame it on the 4 days of TPN, because I for sure did not eat anything much other than the high calorie, high protein TPN over 4 days. Argh!

What next, you ask? I'm not so sure myself. In the bulletin boards I've scoured, I've read that people who were fine up to month 6 post transplant could still develop complications from Graft vs Host disease. So I'll just have to watch for any weird changes and report it to the doctor when it happens. Transplant Doc #2 said I could be discharged perhaps as early as next Monday, if everything remains stable. Cool! I wasn't expecting that at all..since I was prepared to stay here for another 2 weeks. So, hopefully Monday it is then, yeah? Then I can stay home and watch my Animal Planet and Discovery Travel shows..and not to forget...Akademia Fantasia 3!!

Finally, a wish to Mobilemom, who's flying off to Sydney with her family tonight. She will be continuing her battle against Mesothelioma Cancer there. Travel safe, good luck, and shop to the max ok MM (and be reasonable, don't shop till you drop!!). My prayers are with you, always.

- a woozy botakchin

ps: forgive me if my sentences are too long and rambly. I read it again and realized how long they are. I was probably having a mild drug buzz while typing this up just now.

Wednesday, July 27, 2005


How does one go about washing a bald head? Do you use shampoo with conditioner, or just shampoo, or some sort of facial cleanser? If so, what type? Does it have to be for a specific type of skin, e.g. for dry skin/scalp, oily skin/scalp, combo skin/scalp, etc?

Forgive my ignorance on this piece of beauty tip, for I am a newbie baldie. :-))

Credit Card Fraud

About 10 days before I was scheduled to be admitted into the hospital, I received my new HSBC cards in the mail. I only ever used the card twice, when I found that I could receive an instant 10% discount at Starbucks.

Last week while I was mending my mouthsore, a received a call from an HSBC representative asking whether I purchased any items over the Internet a few days before that. I said no, and asked what the website was. The representative said, Hinky Import, LLC. Damn! It sounds like Kinky Import! After asking me a few more questions to make sure it wasn't my family members using the card, we finally came to an agreement that somebody had stolen my credit card info and used it to purchase the items.

Upon hanging up the phone, I immediately logged on to the net and Googled Hinky Import, LLC. I hope it's nothing embarassing like crotchless panties, edible bras or anything of that sort! I found this. Not at all kinky, but definitely, definitely weird. Why would I want to purchase singing bowls, propaganda posters, Tibetan jewelry, opium pipes, etc as it claims in the page title? No wonder the HSBC people immediately identified it as a fraud. Thank God for customer profiling.

another view of my room

A view of my bed. I was told that this bed cost RM36,000. Whatever the price was, it didn't make me sleep any better at night. Heh.

Feeling much much much better today. Had some Coco Pops and Milo. I got over it in less than 10 days. God has been kind, and Yay me! Now that the pain has subsided a bit, I didn't think it was that bad. The dude next door couldn't eat for almost 2 weeks, I was told. But to each its own, I guess.

Tuesday, July 26, 2005


The cyclophosphamide had no mercy on my hair. I'm already bald now.

Things are looking better. They stopped the TPN, so today i mostly drank a lot. I'll probably move to ward 21 in the next few days.

Monday, July 25, 2005

Day +14

Things are beginning to look better. My mouth ulcers have completely cleared, and my throat has improved a lot. Will see tomorrow if i could stop the TPN and just go with the morphine so i can go back to eating regular food.

Sunday, July 24, 2005

regular conversation with a nurse here

...which is getting pretty tiresome. Let's call her NMB (nurse macam bagus).

NMB: so, macamana hari ni?
Me: mm, sakit tekak lagi.
NMB: lah, memang lah, time ni memang macam tu, jadi you mesti jangan putus asa tau. (dgn ekspresi macam bagus)
Me: tau...(siapa pulak yg putus asa?)

Maleh betul lah! She asks me how i am, and when i tell her, she acts as if i shouldn't be complaining. If she's got nothing else to say, then just shut up la. Buang air liur aku je. Hish! I really don't mind other people saying that to me, but when it comes to NMB, i just can't stand it! Next time she asks i'm just going to tell her that i'm loving my sore throat and i wish it would stay there forever. Hehe.

Btw, my fever still comes and goes. My face and eyes have become puffy from too much sleep, the doc upped the morphine to 0.7ml/hour. Will probably ask them to reduce it tomorrow if my throat feels better.


Saturday, July 23, 2005

oh man...!

In my drowsy state, i turned on the tv to watch Jalan-Jalan Cari Makan, only to find the UMNO assembly taking the slot! going to go back to sleep lah. Bye.

Friday, July 22, 2005

List Makanan

A list of food that I want to eat. I won't be able to eat them now, but this might come in handy when I get back to work. You know how difficult those lunch decisions are! In no particular order:

Bagels & Cream Cheese, Domino's Breadstix, CPK BBQ Chicken Salad, CPK Hummus and Pita, Outback Deep Fried Mushrooms, Sauteed Mushrooms @ Pizza Uno, Jake's Beef Tacos, Chili's Nachos Supreme, 1901 Chicago Beef Hotdog, Apam Balik, Nasi Himpit & Satay Sauce, Dunkin' Donuts, McD Fries, Popiah Otak2, Keropok Lekor

Nasi Lemak La Cucur & Kuah Rendang, Nasi Daun Pisang, Tosai, Nasi Beriyani Ismail TTDI, Roti Sardin, Murtabak, Uncle Don's Soto, Roti Telur & Kari Ikan Teratai @ Dayabumi, Little Penang Cafe Mee Curry, Nasi Ayam Hailam, Buttered Prawns, Little Penang Cafe Prawn Mee, Maggi Mee Assam Laksa, TomYam, Udang, Chicken, Curry Flavors, Indo-mee goreng Bestari, Syed's Nasi Ayam Bukhara, Burger Ramly Special

Lasagna, Pizza Uno Pizzas, Pizza Hut Hawaiian Chicken, Pizza @ Hartamas Square, Breakfast @ Chinoz, Breakfast @ Pizza Uno, Chili's Country Fried Steak, Outback No Rules Burger, Hot Dog @ Hartamas Square, Lunch @ Sun Moulin

Fast Food
McD Fillet O' Fish, McD Double Cheeseburger, Burger King Mushroom Swiss

Drinks & Desserts
F&N Zapple, Coke Classic, Air Batu Campur, Cendol, A&W Rootbeer, Sirap Bandung + Ice Cream Soda, Fanta Strawberry, Teh Ais Mamak, Starbucks Iced Cafe Latte, Coffeebean Vanilla Ice Blended, Uptown Village Park Ice Milo Dinosaur, KFC Jelly Ice Cream, McD Choc Fudge Sundae, Chocolate Buffet @ Shangri-La, Jeruk Mangga, Jambu Batu + Asam Boi/Kuah Rojak, Magnum Ice Cream, Strudels Cakes & Desserts, Walnut Brownie @ Secret Recipe

The Lobsterman, Anything with smoked salmon, A meal at Chili's, Manhattan Fish Market, Fish & Co., Sashimi, Soft Shell Crab Temaki, Various Sushis, Brazilian BBQ (to be continued...)

Day +11

They started me on TPN and 0.5ml/hour of morphine today. Will probably be too high to post much for the next few days. The morphine is quite effective for the pain, so i managed to eat some papaya and apple juice for lunch.

Fevers have also started, going up to 40degrees twice today.

Thursday, July 21, 2005

Day +10

I'm not going to say much because things are basically like yesterday. My attempts to eat lunch and dinner ended up with a tearfest despite all the gargling. The TPN (total parental nutrition) tube feeding is beginning to look like a good idea, since i'm quite sure there is not enough nutrition in a small cup of Baskin Robbins (lunch) and Jelly Sirap (dinner). Ice cubes were my source of water today. On the other hand, i quite like my flat tummy now, tee hee!

Doc said this may go on for 10 to 14 days. I believe this is my fourth day since the pain started, so maybe another 6-10 days to go. Must hang in there.

Wednesday, July 20, 2005


Want to eat oso until cry one. So painful my throat! God help me!

Watching the coverage on Perhimpunan Agung UMNO. What 'poyo'ness! Why can't we just be Malaysians, instead of Melayu, Cina, Indian or Others? Over betul la. I see some attendees falling asleep while their leaders speak. What else do they do there other than sit and listen? Oh yeah, probably do some shopping at the bazaar and The Mall. Maybe ride the Matterhorn while they're there. Incidentally, ada lagi ke Matterhorn ride tu? Honestly, i'd rather watch Monkey God on NTV7.

Hari ke 9

So far not so good. I have definitely seen better days. My sore throat is getting worse, so bad that my eyes become watery everytime i try to swallow. I'm eating soft food like really watery porridge. Not even close to the food pictures i see on the net! But that's about the only food i could swallow at the moment.

In my attempt to be brave and strong and all that, the pain was so bad that i started feeling sad. A nurse came in to give me a pep talk. The normal yada yada, but it made me feel a bit better after that.

At times like these, i wish i could be as strong as people think i am. But i am only human, sometimes pain takes over and i break down. People who have seen my tantrums would know how it is. They may think that i give up easily, but giving up has never been part of my agenda. All i want is for them to take the pain du jour away. But some people say, no pain no gain, yeah?

But i know, this too, shall pass. The sooner, the better! In the meantime, jom makan aiskrim! My pick today, Gotcha orange popsicle. What's yours?

Tuesday, July 19, 2005

Day +8

Woke up to a sore throat even worse than yesterday. I think it just happens in the mornings, when I haven't had a drink all night and the throat becomes dry. As I take sips of water during the day, the sore throat becomes more bearable.

Transplant Doc #2 (the one with bluetooth) came today and told me that I should eat ice cream for my throat. Better yet, expensive ones like Haagen-Daaz or Ben & Jerry's (better quality control, he says). Woohoo! This doc is totally awesome! Me mum's gone home to get my dinner and get me some Baskin Robbins. Slurrp. Not that I don't love the cheap Orange Gotcha Popsicles my mum usually buys me, but it's nice to have some luxury ice cream for a change.

I'm trying to keep normal sleeping hours, but have failed so far. I know I shouldn't depend on the dormicum, so last night i ended up sleeping at 4am. The morning nurses here must think I'm a very moody person. But i'm sure when they come for their evening shifts, they'll find that I'm just not a morning person. I just don't like people waking me up in the mornings.

I still am not doing regular exercise, but I do walk a lot to the bathroom and my dvd player to change dvds. He he. A lot of deep-breathing exercises on my bed, though, to keep my lungs tough. I also engage in some singing in the shower as a breathing exercise.

As usual, I'm looking at food pictures today. Collecting recipes like lasagna, baked ziti, burgers in my recipe box to experiment with when I go home. I've never been fond of cooking, but I think it's about time I learned. Must also learn to cook Malaysian dishes like gulai2, curry etc in case I marry a guy who's into Malay food and won't eat anything else.

Woooh, suddenly feel like having Dunkin' Donuts Boston Creme, but I'm not allowed to have donuts or pastries with cream filling in them. :-( Oh well, like the saying goes, "bersabar itu adalah sebahagian daripada iman....."


Monday, July 18, 2005

TV3 Bersamamu

I was watching the show just now, and it was about a kid who had to quit school to work so he can support his family. He is only 14 years old, for god's sake. He makes Rm20 a day, to support his 3 younger sibling. He said that his siblings need Rm2 a day for bus and food, so he quit school to make that money. I didn't catch what his mother does for a living, but she looks quite able.

The thing I don't understand is how the school could let him leave just because he didn't have money to pay his school fees. I'm not sure what the school fees are these days, but i believe our school fees is not the most expensive in the world. Why can't they just let him attend school for free? Isn't this part of the local ADUN's responsibility, to identify problems like this? I don't think problems like being too poor to go to school should exist, but i probably live in la-la land.

We watch tv and we see ministers talking about increasing the nation's level of education, yet we see kids still unschooled because they are too poor. There should be a channel where unfortunate people could ask for financial assistance, at least to pay for their education. Better yet, make education more accessible and free. It should be so cheap and accessible that every child could at least complete their education until Secondary 5. Or use some of the many ringgits we pay for tax to help these people.

Some say that we would create a 'masyarakat subsidi', but i say the government needs to do whatever they can to ensure the education of our children, subsidy or not. Get that poor boy back in school!

Writing about something other than meself, for a change. Heh.

Day +7

My worst nightmare has arrived. I woke up this morning with what feels like a painful lump in my throat. Even swallowing water and my own saliva is excruciating, let alone solids. My mouth feels tight. Turned to xylocaine to numb the pain, but the viscous solution tasted like swallowing a tablespoon of saliva. I threw up as soon as i swallowed it, so it ended up just numbing my mouth but not my throat. But i will not cry now because i know this nightmare will get worse.

I slept last night, finally at 3 am. The dormicum tablet doc gave took 4 hours to work its magic. What a slob, doing a shit job like that!

I'm just going to lie in today, and try to will my throat into feeling better. Good luck, me!

Sunday, July 17, 2005


Kek pun Hak Kerajaan Malaysia. Keh keh keh.

it's 0500 hrs

...and i've only managed to fall asleep about a half hour ago. Then the morning nurse came to take my routine blood sample. I don't understand the need for being so loud and clanky. Why does she like to do that? How would she feel if someone starts banging pots and pans together in the middle of her sleep? Right now i just feel like beating her to pulp. Perhaps with my heavy infusomat.

God bless her.

Saturday, July 16, 2005


Slept till almost noon, when the Transplant Doc came for his visit. Ooops. (I'm tired!!) He constantly reminds me to do some exercises, which so far I have failed to obey. Yes, I'm a brat, but I just hate to move around so much when I have all these tubes attached to me. Plus the infusomat is too sensitive, the smallest shake would set it off. He checked whatever was necessary, and left with another reminder to keep to a regular set of daily activities (including exercising). Thinking of bringing a small step machine in here. Oh we'll see.

Nothing much today. I had two pints of blood transfused this morning, and another bout of chill attack. I'm beginning to suspect that it's just the cold room, not a reaction to any drug.

My latest hobby is looking for food pictures. Spent a whole hour the other day checking out pictures and reviews on, Jamie Oliver's Website and Ooh the pictures are too good! I found some recipes for fish and chips and mum's gone home to make some for me. Yay! I don't like the fish that's fried with breadcrumbs, i prefer the Fish & Co or Manhattan Fish Market type of batter. Then I copied down recipes for Tuna Noodle Casserole, which I'll probably have tomorrow. Mmmmm....tuna....(Homer Simpson style).

I suddenly feel a craving for Outback Steakhouse's Deep Fried Mushrooms. Mmmm....

Is it just me, or have I been talking about food a lot lately?

Ciao tutti!

Friday, July 15, 2005

Hari +4

The day started out excellently. I woke up early, catched up on the news at, and watched my Jamie's Kitchen dvd. The white coating in my mouth has gone for some weird reason. Mum came in and brought lunch, some stir fried beef and 'fries'. I put the fries in quotes because it was an utter disappointment! It turned out to look like keledek goreng, which was SO not what i wanted. And it was way too oily. Shame on the maid, boohoo!

A bit later in the afternoon, a nurse came to tell that my total white was 0.1, my hb had dropped to 8.8 and my platelets were only 18,000. No wonder i felt a bit tired. I had a bag of platelets transfused, for the first time of type B+! I had type O+ blood before, so it was quite exciting for me. I still don't understand how this works with a major mismatch of graft versus host blood type. Hmm will ask doc tomorrow.

Halfway through the platelet transfusion i got the chills. Some adverse reaction to the platelets i believe. Covered myself with about 6 layers of blanket until my body went numb from all the weight. Fell asleep until dinnertime.

Feel a tad better now after some tomyam and potato wedges, and a pack of ribena. I have some rotiboy outside which i'm contemplating. If i want to eat it, mum would have to put it back in the microwave, which will make it taste like shite anyway.

Going back under the blanket now. I feel another chill attack coming.

* 2 hours later...

Chill attack was horrible. Teeth clattering, legs shivering, shoulders shaking..for about 30 mins. A bit strange coz i don't what my body is reacting to! Got a bit frustrated that i started crying. Fell asleep after a good wholesome hug from mum.

And now it's too hot! Bargh!

Thursday, July 14, 2005

Nasi Lomak Ayam Goreng

This is the nasi lemak picture i wrote about yesterday. Nasib baik tak snap using digital SLR, kalau tidak sure terliur habis! Check out the size of the egg. I think it's organic.

Worked up an appetite for lunch by watching Jamie Oliver's Naked Chef 2 on DVD. Jamie is simply pukka! Felt a bit sorry for myself for not getting the whole series up to Season 3. Maybe will try to score them off the net soon. For dinner, I've decided to have my special french fries. Nothing special really, just fried potatoes with a very thin coating of rice flour to make it crispy and golden brown. Dash salt. Dip in chilli or tomato sauce for a truly simple pleasure, mate. Ok help, I'm starting to sound like Jamie Oliver..i'll stop thinking about food for now.

Oh, doc says that the white coating on my tongue is a sign of mucositis. Yukk! As long as it doesn't hurt, I think I'm still good.

There's a bit of redness around the entry point of my Hickman line. Due to my low platelets (today 36,000) there was a bit of bleeding as well. Hope it doesn't get infected while i still need it. I'd show you the picture of the line, but I couldn't figure out how to do it without showing off my chest at the same time (no scandals please!). So just imagine a tube that comes out from under your skin on the chest, which then become 3 smaller tubes (called lumens) that are connected to various drips. The line is tunneled under the skin, and the other end is inserted into a large blood vessel called the superior vena cava. These tubes are multipurpose, could be used to take and transfuse blood, infuse drugs, chemo, saline, etc. It frees up the hands so I could do things like typing this blog entry. A treatment without a Hickman line would make life so many more times harder for the patient. I certainly do not wish to lose mine any time soon.

Off to watch more DVDs. I've resorted to wearing 2 layers of hospital clothes, a fleece jacket and a winter jacket to keep myself warm. I used that winter jacket for skiing when I was in America! That's how cold it is in here! I do feel quite snug and warm now, like the beginning of spring in Pittsburgh.

Stay warm!

btw: When is Harry Putar - Half Blood Prince coming out?

Wednesday, July 13, 2005

Day +2

Mantra of the day: "i will not get mouth sores" (repeat 160x)

Mucositis/mouth sore count - 0
Taste bud - completely bonkers
Blood count - dropped. Total white 0.2, hb 9.1 and platelet 41,000
Color of tongue - white..horror!

i guess i'm still having it easy, alhamdulillah. The extreme temperature continues..And doc suggested that i put up a picture of the Alps on the wall. I could do that, but i don't know how that would make me feel any warmer, imagining myself in a room without heating in Switzerland! Maybe i'll put up a picture of the Melaka Petronas Refinery instead. Kekeke. That should teach me to stop complaining about the cold!

Despite my taste buds, i ate awesomely today. After a 3 hour wait and almost going faint with hunger, mum arrived with the best nasi lemak ever. I couldn't taste it effectively, but i could tell it was très delicious from the aroma! The aroma of fried chicken, the steamy fragrant coconut rice, the crunchy ikan bilis, simply superb! Will post a picture tomorrow. Later for dinner dad brought some fettucine alfredo from home and i stuffed my tummy again. Burp!

Not that i enjoy sharing my shower activities with you, but today while showering, i decided the heck with it and shampooed my hair and washed my body using my shower gel. The nurses told me not to use soap or shampoo until at least 10 days after radiation. So far no weird rashes have appeared, and i now smell like fresh olives and coconuts, which is nice. Because of that, i know i will sleep better tonight.

I suddenly feel heaty now, like i'm about to develop a fever. Nurse said it's probably just the cyclosporine making me feel hot. Hope she's right.

Anyway, i should rest. Till next time, ciao tutti!

Mencari Cinta

Due to the lack of Astro, i found myself watching whatever i could on terrestrial tv. There was a new local reality show tonight on TV3 called Mencari Cinta, one quite similar to the American show the Bachelorette. 10 malay dudes pursuing the love of a girl. 1 man pulled out before the whole thing started, claiming that he had found a girl while the show was setting up. (whatever, chickenshit, paak-pak-pak!) The girl will come on to the show next week. I'm quite interested to find out how the show will turn out, with sex scandals out of the picture (out of national tv, at least). Plus they all look like regular Ahmads, unlike the hunks you would find in the bachelorette. I only wish the host would quit her 'makcik-kuat-bergosip' northern accent, which got rather annoying halfway through the episode.

Mawi world! Eh! Oops! Bzzt, silap channel pulak. Gnite!

Tuesday, July 12, 2005

Day +1 (and some piccies from Day 0)


That's the stem cell in the flask circled in red.

That's the doc preparing the stem cells. He's defrosting it i think. Doc's got a bluetooth headset on his ear. Very the technogeek!

The bag of stem cells. The red color is not blood. It's the preservative that's used to freeze the cells. The original color of the cells is yellowish clear, if i'm not mistaken.

A closer look.

Me looking like a scrunched kermit trying to smile for the camera while feeling extremely nervous.

Thanks to my brother, who made all of this possible.

Day +1 has been fine so far. I couldn't sleep last night, worrying about the dose of Mtx i'm getting today. Mtx is a drug used to control GVHD (Graft-Versus-Host Disease). The nurses kept telling me since last week how the little dose of Mtx can cause very painful mucositis. I got very nervous last night after hearing all those warnings, and kept waking up every few hours thinking I have mouth sores. Maybe I'm approaching this the wrong way. Most of my energy here is wasted on worrying about the pain that is to come, which so far hasn't come yet. I feel mostly uncomfortable of the "extreme weather conditions", the tubes that inhibit my movements, etc. However, pain is something I have not yet come across since I came here (other than the Hickman line insertion on the 4th of July). So far it has been test of my patience and adaptability, rather than how much pain I can withstand. So, from now on, I will stop worrying about the damned mucositis and deal with it when it happens. Hopefully, by some luck and power of God, it won't happen at all.

Monday, July 11, 2005


Thanks to all your prayers, the infusion went smoothly. Only a bit of breathing difficulty during the first bag, probably because i was dead nervous and refused the relaxant since i am allergic. Bracing myself for the worst now. :-)

status update

Thanks to those who sms-ed me their well wishes. Belum start lagi, the nurse is changing my i/v line still. I'm trying to be happy, but bilik ni is starting to feel like the set of Survivor Alaska! Hahahah.

this is it

Today is Day Zero. So far nothing has happened yet. The stem cell infusion will happen at around 10 or 11am. Am i excited? Only a bit, amazed at the wonders of modern medicine. I am about to replace my whole blood production system with my brother's, and i'm more taken aback by the unnaturalness of the whole shabang. The blood that has kept me alive for the past 27 years will cease to exist in a few days. A new one will start, to keep me alive for another 27 or more, insyaAllah. This is why people who have had transplants always say they have two birthdays i guess. Pain gauge so far: physical - 0%, emotional - 20%.

See you later, with some pictures, perhaps.

Sunday, July 10, 2005

rest day (not!)

Oh, for God's sake! So far I'm not feeling like it's rest day at all. The nurses started barging in and out as early as 6.30am as usual, clanking the metals in my room for various reasons; to take blood, to make the bed, to i don't know what else! The infusomat alarm would go off every few minutes, which is becoming increasingly irritating. I miss the laid back environment in my usual ward, but i guess they have stricter rules to follow here.

So here i am, sending an entry to my site, watching TV3 Sureheboh at 9 am, with another long, cold day ahead of me. They better be true to their words and leave me alone after this.

Saturday, July 09, 2005

chemo day 2

GPRS not fast enough to watch the AF3 live telecast via the Internet. So here I am blogging instead.

Had my second chemo today. It's the last chemo of this transplant protocol. It went by quite fine, just as yesterday. So, tomorrow I'll have Cyclosporine injected over 4 hours for anti-rejection when the infuse the stem cells on Monday. The amount of cyclosporine will be reduced over time, but the doctor told me that I would have to take it for at least 6 months or so. It's a type of steroid, so I really hope I don't grow a beard or facial hair or anything weird like that.

Ida J: Didn't you lose any hair taking the cyclophosphamide? I'm expecting to lose hair anytime soon. Next week maybe.

Friday, July 08, 2005

chemo day 1

Had my first chemo today, cyclophosphamide over 1 hour. I was covered with Kytril and dexa for nausea, and mesna for my kidneys. No problems so far, just felt very sleepy during the infusion. Hope tomorrow will be the same easy day. My total white count has dropped to 3.9 today, which shows that the radiation is already working to destroy my immune system.

The Transplant Doc came in today to explain a few more things. He's one of those doctors who you would want to be brave for. They're so kind that you just want to make their jobs easy. You hope that everytime they ask you how you are, you get to tell them that you're feeling great. Sometimes you meet certain doctors, and for some odd reason you just want to make life difficult for them. 0f course, once in a while, you try your best to be brave for the kind ones, but it's so painful that you feel like you have failed them. Luckily i have never met a doctor so terrible that i just want to drop dead in front of him. Hope i never meet such a person. So, which doctor do you want to be?

Peace out.

Thursday, July 07, 2005

ayat syifa' (ayat penyembuh)

I'm trying to memorize this in arabic but maybe i should be trying harder.
1. Dan Quran menyembuhkan hati orang-orang mukminin
2. Dan penyembuh bagi suatu penyakit yang ada didalam dada
3. Keluar dari perutnya minuman yang beraneka warna menjadi penyembuh bagi manusia
4. Dan Kami turunkan dari Quran sesuatu yang menjadi penyembuh dan rahmat bagi orang mukminin
5. Dan apabila aku sakit, maka Ia (Allah) yang menyembuhkan aku
6. Katakanlah hai Muhammad, ia (Quran) menjadi petunjuk dan penyembuh.

radiation day 3

again, nothing interesting happened. but the radiotherapy ends today. I'm feeling OK so far. No skin burns, no nausea today. Gained a bit of appetite, so I had all three meals. The process isn't too complicated, really. They take me into a room, start plugging some diodes on my body, and shine the radiation. It takes about 30 minutes per session. 10 minutes to get ready, 10 minutes to shine the front part of my body, and another 10 minutes to shine the back part. Then I get wheeled back to my ward.

here's a picture of my infusomat. I call it the Movement Inhibitor. It's just so bloody heavy, it doesn't make me feel like moving around the room or going to the toilet. Plus it's so cold here i'd rather stay under the blanket!

Ok, will probably start memorizing some prayers for tomorrow, and then watch some Jamie Oliver, maybe. I start my high dose chemo tomorrow. Wish me luck!

Wednesday, July 06, 2005

radiation day 2

Nothing much. Still feeling tired, and have lost my appetite. Everything seems tasteless, including kfc's mashed potatoes that has never failed me so far. My thyroid glands are a bit swollen, due to the radiotherapy.

My blood count is dropping, total white 4.6, hb 10.2 and platelets 132.


Tuesday, July 05, 2005

radiation day 1

Hickman insertion had a bit of complication yesterday. My chest and shoulder are still a bit sore now. Blood counts were normal, white count 5.7, hb 13.1 and platelets 179.

Had my first radiation this morning. It was painless, but i felt very tired after that. The room looks like a ct scan room, only instead of going through the ct scan, they place you in front of the radiation machine and shine the radiation towards you. I vomited a couple of times today, but so far nothing i can't handle. At 3.30pm, i was sent for my second dose of radiation.

Am going to rest some more now.

Sunday, July 03, 2005

woi sejuk nye!!!

i'm settled in. Man this room is colder than Pittsburgh! at least in Pittsburgh we had decent heating. Forgive me if my typing gets gibberish after this, but I think my fingers will freeze at any moment now. It's causing my veins to hide away, making it impossible for the staff to insert and i/v line for me. After a few tries, we decided to do it tomorrow just before the antibiotic is given.

The room is not bad at all! There's a tv and vcd player, and the reception is quite good. I get channel 8 here, which means i'll get to watch Joey, Desperate Housewives, Malaysian Idol, etc. I'm just not too comfortable with the window, so people can look inside. Check out the picture!

Aight...i'm going to catch some sleep. Didn't sleep at all last night.

all set

pay house loan - check
pay credit cards - check
pay car loan - check
pack toiletries & clothes - check
pack quran & prayer book - check
get gprs to work - check
pack laptop - check
pack dvds - check
copy tv series - check

all set. wish i was packing for summer camp instead. or an overseas work trip, perhaps dubai or madrid. (although i don't know why my company would send me there..)

note to self: get a portable hard disk to copy stuff from home.

ps: ananda, dude, what about the 3G card man?

Saturday, July 02, 2005

Unready Heroes

A lifetime of steady schooling: alphabet-rotes, number recital, history's dates, cake-baking, fuse-fixing, slow-dancing, how we are born and grow and age and die - didn't ready you for the naked facts of our Consent Form.

A lifetime of educated modesty: closing your bedroom door, covering your body, segregating girls from boys, separate facilities for men and women, learned euphemisms for your body's functions - didn't ready you for our free inspection of your daily portapotti.

A lifetime of careless risk-taking: climbing trees, jaywalking streets, diving rock-pools, floating to sea, driving fast cars, flying airplanes, rash rollercoaster thrill-seeking - didn't ready you for the chill reality of this life challenge.

A lifetime of practicing precaution: sheltering from harm, not overdoing it, running in the middle of the pack, getting by with the least amount of effort, okay grades without too much distinction - didn't ready you for our accolades of this your hero's role.

John Graham-Pole, MD, University of Florida, Professor of Pediatrics

Friday, July 01, 2005

T-day minus 11

Went to see the respiratory specialist today, to go over the lung function test result. After looking at the numbers, the doc told me that my lungs are in good condition. The restrictive disorder is expected since i had a lung infection, so there would be expected scarring in my lungs. The scars would heal over time. Anyway, the doc thinks that my lungs won't be a problem for transplant purposes.

After i was done with the lung people, i went for an ultrasound of my spleen and liver. Both look clear.

Great! Now my body is ready to be destroyed, and to be built again. I'm mentally prepared, and totally nervous.