Sunday, October 31, 2004

Bye bye Mr Hickman...

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

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

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

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

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


Friday, October 29, 2004

Chapters of life

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

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

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

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

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

Saturday, October 23, 2004

Is it like a computer game?

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

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

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

It's like a bad dream...

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

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

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

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

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

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

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

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

Sunday, October 17, 2004

Back in the hospital

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

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

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

Adios per il momento. Ciao tutti!

Monday, October 11, 2004

Still home

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

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

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

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

Sunday, October 10, 2004

Packing Time

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

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

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

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

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

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

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

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

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

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

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

Will update, as and when. Ciao tutti!

Friday, October 08, 2004

Home time

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

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

Ciao for now.

Saturday, October 02, 2004

News from a hospital room

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

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

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

Bye for now.