Feeling better this morning, not so mentally tired. Actually hungry for breakfast. I get bacon apparently though I have to be careful what I eat and not get indigestion! I would hate to have that right now :-/
Had to fast for CT scan which in itself is fine... except the chemicals they give you to make your inside opaque and stuff gave me the runs :-/ That was an unpleasant. The rest of the night past in a vague blur of sleeping.
Bone marrow day today. Had it done about 12pm and by 3:28pm Dr Trotman came up running and said "Good marrow!" before running off again to a meeting.
OUT PATIENT DAY!!!
Had another quick bone marrow because the one from the day before misbehaved and clotted too quickly for a good proper sample. Dr Fernando was again the quick and sure hand.
Had to fast again for my first ultrasound too, so that whacked me around bit more after Wednesday. Got home though and had a proper meal, though was too tired to do much else.
Had to practice doing a few things at home too cause I am weak as a kitten, simple things like sitting down are now chores :-/
Finally some peace and quiet sleep - no more observations! :-) Still tired, but not as much now - the thing is though now I have to switch from a month of hospital/western diet back into home diet and meal times - really not sure what that will do to me right now.
But it all doesn't matter - I am now in remission and at home :-D
Feeling better this morning, not so mentally tired. Actually hungry for breakfast. I get bacon apparently though I have to be careful what I eat and not get indigestion! I would hate to have that right now :-/
Blah day! Completely buggered tired as hell. Slept slept slept slept slept and slept... then a fairly harrowing experience going to my bone density scan - *shudder* Next time I am just going to tell them to come back some other time.
Should be discharged on Friday and I can go home proper, yay! :-D
A whole night with out stomach pains, yay for anti-acid pills! Now lets hope the rest of the days is just as pleasant and I don't need any mylanta - then I can go home with out worrying about having really bad stomach pains - something food no longer fixes up :-/
Now I am hungry proper, and it is time for breakfast!
Found out my hunger pains aren't hunger pains after all - its the chemotherapy causing stomach acid problems. Initially just eating anything will make the pain go away so I thought I was hungry - thus my complains about not enough food!
So now the doctors are giving my anti-acid drugs and mylanta to stop the stomach acid problem - hopefully now I will stop eating so much and stop giving myself stomach problems. A good night sleep with out being interrupted by eating is something else I am looking forward to!
Had a good night talk with felipe on freenode, something that took my mind off the usual things. Cindy has convinced me to eat diary products again even though I had reservations about indigestion - she will be monitoring and will switch to soy-based products for my calcium intake if I do demonstrate any symptoms. It is nice to eat some cheese again :-)
Dad bought cooked vegetables for dinner, which is the one thing I really really miss in my diet - good amounts of fiber. The sandwiches for supper were excellent and filling, even though I did feel hungry again at about 3am and had some noodles. Maybe if I slept earlier I can avoid being so hungry!
Also found out my LEGO mind storm kit rocks! The RCX brick can run a proper OS and be programmable in C/Java/Lisp. Can't wait to get home proper and start hacking away at it!
Writing my SASSy concept paper is the plan for today, and probably for many more days to come while I am in hospital where my organisational and productivity capabilities is limited still. I tire more easily these days, have to take more breaks.
Stomach seem to have settled about 4pm. Hopefully that is it! Dad cooked dinner as suggested in the chemotherapy book which did me a load of good. Slept fitfully for a few hours, always worried about having to make a dash to the bathroom - thankfully nothing like that happened. Eventually I feel asleep proper.
Cleaned up breakfast cause I was hungry, still no bad effects which is good! Not entirely sure what the state of my stomach is right now, that will have to wait and see.
Still feeling productive, lets see how it goes today :-)
Yesterday was a lazy kinda day - I was feeling mentally tired so I spent most of the day reading Fallen Dragon. Dad bought me excellent food so I was well fed through all the day. Also met the other blood specialist who will be covering me when Dr Trotman is away. Couldn't quite remember her name.. Dr Mariana? The food lady is Maria I think.. damn it now I am just plain confused! Emma will know. I have a terrible memory when it comes to names.
Cindy, the dietitian did come and see me - instead of potato/rice they will try and give me cooked vegetables like broccoli and stuff. Also going to be given some soy milk which will hopefully provide the calcium minus the indigestion :-) All in all food is being sorted with extra sandwiches/sustagen being delivered for me at supper.
Got my second last "heavy" chemotherapy too - bit of numbness but no nausea this time! Though my toes and fingers are feeling a bit numb - something I am told to expect. Seems to be going away though.
Stomach is like a clock - 30minutes past midnight and I was up and hungry. Ate 2 of Mum's sushi, went back to sleep at 1am or so. 5:30am, woke up again due to hunger, ate the other 2 sushi and been up till now playing with xfig. Still a bit peckish, only got 3 slices of Salada left though :-/ Another hour until breakfast! Blah.
Feeling productive today, so lets see what I can do...
Spoke to soon - the nausea kicked in about 8am despite all the drugs - seems inevitable regardless :-) Thankfully it is over now.
Dr Trotman, Vincent and Christian came to see me just then. While a preliminary search shows it is unlikely for me to find a fully matched adult donor, there are many 5/6 matches for cord blood for me. Hopefully this will put family's mind at rest a bit. Oh and the other blood specialist is Dr Nicole. I hope I got the spelling right. A physician is also going to come and see me so I can do some light exercise in the gym to keep up my muscle mass. Yay :-) A team of liver and bone people are also going to see me because of the medicine I take could give me liver/bone mass problems.
Had a nice talk with Christian (sp?), a very kind German graduate student. He told me the protocol I am on is in fact developed in the same institute where he studied. He even gave me the names of the professors who developed it! I hope he enjoys his study/holiday here in Australia before he goes back and become a practicing doctor.
Got my HLA type too.. here are some random numbers:
A24, 33 B27, 62 DR4, 14
The damn IE CSS bug is still around. Blah! Need to somehow fix that. Feeling right as rain again, so lets get back to being productive...
Being productive is hard when you can't keep away from the porcelain throne for more than a 15 minutes :-/ Ironic, the day they increase my food is the day I get hit with this side effect. I only hope it doesn't last :-/
Got day leave again yesterday :-D Yesterday was also the Sydney Atomic Blood Meet where the absolutely wonderful atomicmpc  community went and donated blood for me! Many many thanks to all again!
I got home at about 1:30pm, had a big filling lunch and went for a long walk with Mum to exercise my legs - I am weak as a bleeding kitten :-/ Emma came over shortly after at about 3pm and we walked and brainstormed more ideas for the bone marrow drive. Thing are looking a lot more solid now.
Everything was well until I tried some vanilla Ensure - blah! That stuff came right up again and made my feel like crap :-/ Eventually I recovered enough to get in the car and back to hospital where some anti-nausea drugs made me feel well enough to have some dinner. Dad's cooking is still tops.
All in all, it wasn't a bad day - I enjoyed being home and just doing normal'ish things - and it is always nice to see my cat :-D
Big big thank you to the following wonderful atomicans:
I know these names make little sense to non-atomicans, so a brief introduction is in order - these people are part of an online community centred around the Australian magzine atomic. They are a wonderful bunch of techheads and their compassion and generosity is an asset that has helped many many people over the years. Go a head and have a look, the community isn't only limited to the technologically inclined!
Woke up an hour ago, hungry. Ate Mum's susi and felt much better. Couldn't sleep so I went a-googling and found http://www.leukemiasurvivor.com. Started reading then my damn phone card won't work any more - card number no longer valid! Maybe I can get one of the nurses to get me a new card in the morning.
Either way, that website is a good one - Robert K Brown, diagnosed with AML in 1990, 16 years ago - and he is alive and well today. That is one thing I been looking for, people who have survived leukemia long term - not 2 year event-free survival, not 5-year event-free survival, but decade plus event-free survival. Do I feel better now? You bet! I have something now Robert didn't in the 1990s - 16 years of advances in medical sciences.
Can't wait to read the rest of the story.
Phone card started working again, didn't need a new one after all. Dad got my a new one anyway, so I am covered good now. Read more of Robert's story and I thought I would share the following:
"Your chances are not 20% or 50% or even 80%. You either survive or you don't. Period. Today you are surviving. Yesterday you did the same thing. Every day that you continue to survive you have a one hundred percent chance of survival. Your odds, your personal chances of survival, are at 100%." 
Well before I even finished writing the last entry Dr Trotman came to see me and I was very quickly taken home for some home leave! First time I missed a daily entry, hehe.
Day leave was fantastic! I had 1/4 chicken and chips for lunch and it was just... amazingly nice to eat something so ordinary! Then I had a proper Chinese dinner with rice and everything!
That my 1.5MB connection, hehe, Finally go around to watching the new Peter Russel video with Emma - I am amazed at his ability to avoid a knife in the back :-P He is still right up there with the funny, but sometimes I do cringe when he makes fun of people.. but somehow, he gets away with it. You will just never catch me telling him my name ;-)
Didn't get much organisational stuff done, other than an idea of atomic's reach in Universities, which is pretty much universal. Go geeks :-) Felt pretty tired when I finally got back to hospital, and with a full stomach I slept well.
Just had a cup of Sustagen thank to a very very thoughtful family friend! Chemotherapy is finally kicking me about - took it long enough ;-) I am going start eating as per my culture again, which is a lot different to how I have been eating recently with hospital food. Mind I am not saying hospital food is crap or anything - it is pretty good at times and I am immensely grateful for the meals - it is just that at the end of the day my dietary requirements is still best served by Chinese food - it means a lot of rice, cooked vegitables, etc. Basically I can't keep eating like a Westerner! My parents are more than capable of supplying all my meals, the only problem is when they can visit. I still get my midnight/morning hungers, and until I can see the dietrian, a cup of chocolate flavour Sustagen is going to have to do! I am not complaining, it tastes like hot chocolate :-P
Now to make another cup to sate my hunger, and get on with more planning. Hopefully I get home leave today and have more home food. It would be nice to meet Bec at home too and have her meet my family. Mum and Dad are eager to apply their recently learned knowledge of what constitutes a proper Western Meal (from observing my dinner menu and quizzing Emma) :-P
Busy busy planning yesterday. I started off meaning to organise a University of Sydney bone marrow donor drive, but now the idea has expanded with the help of many wonderful people into organising the world's biggest bone marrow donor drive! The target to beat is unknown, but the largest single bone marrow drive is 1724 as organised by the US Navy . I think 1724 is easy target to beat.
I was probably my most alert yesterday since I started chemotherapy, which ironically meant I neglected to update my diary since I spent most of it doing "normal" net stuff :-P Been reading a lot on bone marrow transplants and the associated complications, specifically GVHD since a BMT is in my near future due to me being diagnosed ph+ positive ALL. How Gleevec will help me is still bit of an unknown at this point, but all signs are positive.
It would seem the biggest hurdle to my bone marrow is one of chance - whether or not I can find a suitable bone marrow donor. Unlike the lottery, whether or not I am a winner has already been decided with very little "wiggle" room - either the international bone marrow registries contains a donor who match or they don't, a result which takes a few months to find out.
Now the largest bone marrow registries are understandably in Western Countries where the costs of performing tissue typing is transparent. In Australia for example it costs nothing for some one have their tissue typed and stored through the Red Cross. So the consequence is that a majority of donors are Caucasians. It is a bit ironic, but Asians are the ethic minority for once :-P
Now it is entirely possible for a donor who is a perfect match for me to come from anywhere - but there is a naturally strong correlation between race and compatibility. If the international registries, which includes the Taiwan registry - the largest Asian registry and 3rd largest in the world- doesn't find a match, I still have a little wiggle room in the form of still developing China bone marrow registry. It costs 65USD to tissue type a single person in China. 65USD might not seem like a lot, but it is the equivalent of a month's wage to an average Chinese. The Chinese government provides the bone marrow registry centres with a yearly quota of only 3000 donors - that is, only enough money per year to tissue type 3000 blood samples, even if there is a million people lined up willing to participate. It is planned that if the need arise, my parents will attempt to fund as many additional tissue typing in China as they can, either out of pocket or via donation drives here with in Australia to attempt to find a donor for me.
I am going to try and start a donor drive at University of Sydney, particularly amongst over sea students from Asian countries. Asians are at a sever disadvantage when it comes to registered bone marrow donors and if they are here studying, they can be tissue typed where the only cost to them is a bit of time.
Nurse Julie just took my blood sample. Not sure if doctors will let me have day leave today. Talked to acute online, a UNSW student. We are going to try and organise an massive student donor drive, especially amongst the over sea students who can not so easily get tissue typed in their own country.
To this end I will get Emma to scan my best picture, and I shall exercise some of my creativity in a bit of self-promotion :-P The ultimate goal is organise a big bone marrow party between all the major Universities where as a student I have the most influence, where people are rewarded in food or prizes for becoming registered donors. Every new donor makes a difference!
Blood results are in! Been neglecting to post them lately, so here are the last few days' results:
• wcc 1 • Hb 101 • Plt 52
• wcc 1.4 • Hb 110 • Plt 60
• wcc 2 • Hb 116 • Plt 62
The doctor said that those levels are holding, it means my bone marrow are working somewhat which is good because it means leukemia isn't affecting me as much. If treatment wasn't going well. This mean I shave today :-)
Work is progressing on the donor drive front, I am slowly recruiting people. A plan is being formed...
Woke up at midnight, feeling hungry as usual. Thankfully Mum got me some Susi earlier so I can eat them :-D That didn't fill me up, but it did give me energy and some degree of alertness... enough so I went to sleep at 2am. I am always going to be a night owl :-P Did have a rather "normal" conversation with Emma though over IRC, just like old times when we stayed up talking. Thank god I can get net access here, otherwise I would be cut off from 90% of the world. Not sure how I can remotely deal with that being a child of the information age.
Slept through 4 hours, then hunger hit me again at 5:30am. No point in going back to sleep though I am feeling fine thanks to all the sleep I get in during my not-always-hungry-periods of between breakfast and dinner, hehe. See, breakfast is at 7:30, lunch at 12:30, and dinner at 5:30. So 12 hours between 7:30 and 5:30 is when I rest best because I am mostly not hungry. My hunger seems to work on 3 hour shifts too, which means when I get home I am going to eat like 8 small meals a day. Thats something I am looking forward to! Just give me a sandwich maker and cheese and I will be right.
Speaking of cheese... mmmm cheese... Maybe I can get them pizza from downstairs the nurses talk about... mmm
Another hour and 10 before a meal... might break out my last supply of noodles... or raid the vending machine for some "healthy" food... like smoked tuna! :-D Or some cheese based chips... but that is not strictly healthy either!
Maybe later, just before lunch say. Dad is bring noodles, so I might not be so hungry later. My eyes are always bigger than my stomach. This I must keep in mind!
This is also day 10 of chemotherapy, and I still have all my hair, still hungry, still no infections :-P
I got told last night at 5, just before dinner, I had to have an injection! In my gut! That was a nasty surprise! But it didn't turn out so bad :-P It did kinda damper down my appetite though, hehe. The injection is suppose to encourage growth of good white cells because it seems my blood chemistry is somewhat recovering and Dr Trotman want my non-infection run to proceed through out my entire time here which would be a God-send.
John called last night too, he is ever so thoughtful trying to keep me in the loop not to be left out of whatever it is happening with our friends. Unfortunately he caught me during my 8-11pm sleep period so he just got a few mutters about me sleeping, hehe.
Also got an email from Nick who wanted to visit, and also from my high school physics teacher Mr Coward, an all round top-bloke. Made me feel all loved and stuff getting messages from my old teachers, all of whom during my formative high school years were there to shape me into the fine young man I am today.. or so they say ;-)
Oh, for the record, please direct all emails to email@example.com!! I can check that email account much easier, and I also get less spam there :-)
Couldn't sleep past 5am, too hungry. Eating some noodles Emma got me. mmmm This hopefully will last me until breakfast when I will be full again. I am always seem to be hungry lately, but that is probably a side effect of the steroids they are giving me.
Going to do some exercises, especially my legs! They will waste away otherwise and I want to be as independent as I can. This means of course raiding the patient fridge myself! It is only like a 10 meter walk, but it gives my calf cramps going that far! Absolute shocking state of affairs!
Normally I would be asleep, but this afternoon proved interesting. Dr Trotman and Allison came to see me today for longish talk about my condition. During this informal session Emma and Mum also arrived, so it turned into bit of an informal family session as well.
After talking to Dr Trotman, I think Mum finally came terms with what leukemia is and what it might mean for me, her only son and off-spring. She felt it was unfair that something so nasty and unlucky can happen to "such a nice boy", a mentality of karma that is rather deeply ingrained in Chinese/Asian culture - be a good person, and bad things don't happen to you.
Saw Mum later though when she came to visit, and she seem to be doing well again after talking to Dad and both of them finding out more about it.
Dr Trotman and Allison are still doing literature review on Gleevec, and have determined that I will start taking it as soon as my body can tolerate the side effects. More than this, like statistics, they can't say because Gleevec really is re-writing all the numbers when it comes to Ph+ leukemia. However they have a 3 prong approach planed:
1. Chemotherapy to get me into remission. 2. Gleevec to keep me in remission while a suitable stem cell donor is found. 3. A stem cell/bone marrow transplant to cure my leukemia.
It is expected step 3 will occur in a few months from now, provided a suitable donor is found. My parents are going to get tissue typed, to see which side of the family is a closer match. Then from there my relatives can get tissue typed at major hospitals in China and if a match is found, they can be flown here to give me stem cells!
Also found out that Concord Hospital is one of the University of Sydney teaching hospitals, and Dr Trotman is a senior lecturer :D It almost seems like I never really left University at all :-)
Arg! Nausea! It hit last night at about 11pm, approximately 4 hours after my second dose of intensive chemotherapy. Right on cue actually. Thankfully no throwing up this time and the drugs make me feel a lot better too. Had a pie yesterday, sasuage roll and fresh dumplings! Heaven! Just as well because chemotherapy made me miss out on dinner.
I think I feel more "human" about 7 days after my intensive chemotherapy sessions hence my increasing appetite. But then the steriods they give me also have the same effect. Either way I get hungry, hehe.
One of the nice nurses, Nurse Mavis(sp?) gave me an apple and kiwi fruit for breakfast which was a welcomed break from biscuits and tuna snacks, as nice as they are. Between dinner at 5pm and breakfast at 7pm there is a total of 14 hours with out food! And I am the kind of person who wakes up at 2am and make myself 2 cheese sandwiches normally!
Thankfully I have parents bring me food and snacks. Some of the elder patient are not so lucky :-( They have no one, and they can't say they are hungry. That must suck big time. Wonder if there is anything I can do for them...
Just read a lot more about Gleevec, a new and fangled drug which is set to improve my chances of a cure by a lot because I have the Ph+ mutation. Normally this mutation is a bad thing, that is until Gleevec showed up :D It is a specific drug that targets the mutation and stops the abnormal cells from living. A very encouraging piece of news is that in 2004, 23/24 patients with ALL given Gleevec went into complete remission and have stayed that way for 26 months! This is now almost 1/2 way through 2006 so I expect a lot more experience would have been gained in the matter of treating my condition with this new drug. Even better news is that there is a successor to Gleevec which is effective against 15/16 mutations that makes leukemia immune to Gleevec!
Now don't worry about me thinking this is a cure for leukemia, I know it is not (yet!) but it is a bloody good boost to my chances, especially considering before Gleevec my only realistic chance of a cure was bone marrow transplant or stem cell transplant - and I have no siblings!
Anyways, I think a shower is in order and such. Still waiting for breakfast, hehe :-P Oh and I weight in at 66.7kg or so this morning.
Dr Allison and her cohort of doctors and doctors in training came to visit just then. I am told that the Ph+ mutation is one of the causes in my kind of ALL so the drug Gleevec will be effective for me. Further more they are reviewing the studies in using Gleevec with chemotherapy, so they might even start me on it soon, or wait until maintaince/consolidation/post-BMT. The doctors will know best what to do.
My blood stats are not bad today:
• wcc 0.5 • Hb 110 • Plt 72
Notice the increase in Hb and Plt - these are with out infusions. It is a sign somewhat my body is attempting to return to normal, though my wcc count is being surpressed by the chemotherapy. These are all expected signs and numbers are expected to fluctuate every time I get more intensive chemotherapy. Over all I am doing well, and been told I should eat what ever I want, hehe :-D
Dad is bring noodles for lunch, yum yum! Can't wait naturally.
Nurse Lee showed me where the vending machine is so I raided it for the last Sealord Snakit. There shall be no more until my parents get them! To my great dismay there is also no where I can easily get instant noodles :-/ I love them at night, preservatives be damned!
*sigh* Still hungry, this chemotherapy is suppose to make me loses my appetite, it just isn't happening! Breakfast is not for another half an hour either, blah!
Going to catch up on the world some more, then eat breakfast when it is served. Going to ask dad to make me noodles today instead of stew for once. Variety is good!
Oh yeah, I weight in at 65.7kg or something today, and I have one buttock injection scheduled.
Dad just got me a plain meat pie. OMG IT WAS FANTASTIC :D :D The taste of pastry and minced meat... *drools* Nurses have told me of this wonderful bakery place down stairs that makes these mini-pizzas.. they have offered to get me one if lunch proves not to be enough :-D
Might take them up on that offer tomorrow.. or today! :-P
I think I have found the cause of my heart rate going up. It is not too much food as I thought, it is not enough food! I can feel my stomach wanting more food, and if I tell it mentally there is no more, my pulsation goes away. So there. Further, I sleep poorly when hungry, just like my mother. Probably explains why I sleep best after meals because that is when I am full.
Feeling pretty energetic at the moment due to food and what not, though I am not full full I am not hungry either :-) I read http://www.cancerguide.org/median_not_msg.html which is an inspirational article on keeping positive, and it helped! Recalling what statistics I can, I can see the argument, and I am going to be one of those people who beat the odds by a factor of 30!
After my last entry I went back more or less to sleep again. Though my sleeps are interrupted in roughly 2h intervals to go to the bathroom due to fluids, but I seem to have gotten used to that.
Oh and my blood stats were:
• wcc 0.4 • Hb 109 • Plt 69
Woke up to my pills, and did a set of 10 squats/standups... and ouch! My leg muscles are sore :-/ Goes to show much you slowly waste away in hospital. Going to keep doing them until I can push 20 to make sure I am still fairly fit. My arms needs the same kind of exercise, so it is morning iBook lifting time too!
I also finished the entire packet of rice crackers, heheh :-P Still loving them! Not like there is much in them, mostly air anyway...
Breakfast won't be till for another half hour or so.. so more crackers! Nothing painful scheduled for today, something I always like :-)
Body weight this morning was 67.5 or something, back to the same as I checked in according to Nurse Lee.
I know this is sounding like a commercial... but them Sealord Snakkits are great! Cracker + Tuna is something I find very satisfying - I think I know I am missing out on fish in my diet or something. The best thing is that they are light, and having even two doesn't make my heart rate go up or anything. Just absolutely perfect! Going to get parents to get me some, put them in the patient fridge with my name on it so I don't keep having to buy them from the vending machine.
Feeling awake now due to having slept soundly due to some anti-allergy drugs, so I am going to catch up with the world for a bit!
Woke up feeling hungry, and Tom got me some instant noodles! OMG it is fantastic having something hot and soft to eat at night for a change. I am not sure how I can arrange this every night cause too much instant noodles is still bad for me... but damn it is nice!
Best staff here ever!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Now let see how long I can stay awake for before I fall asleep again... :P
Mum and dad delivered 2 fresh burgers as I requested which made me fairly full in combination with the hospital supplied dinner. Slept through the entire night with out the need for munchies! Emma came to visit at 6pm though I mostly just slept through the entire visit. Digesting food takes a lot out of me. I need to learn to eat in small snack quantities so I can stop being such a sleepy head when people come to see me!
After visiting hours, I just kept on sleeping until now which means of course now I am wide awake and alert while every one else is sleeping and can't visit :-/ Curses! Need to work on that so my alert hours co-incide with visiting hours.
I just got weight then too, I am 64.7kg or so, down from my usual 65kg. I will probably be told to eat more food real soon, hehe. I have a single buttock injection scheduled for today, but thats it. That ain't so bad, and it will be 3 out of 6!
I am going to walk around my room a bit, and exercise my legs to stop them from wasting away.
Dad delivered some nice home cooking about 30 minutes before which was highly appreciated by me :D I have found some light exercise after I eat, along with a less rigorous fluid consumption level really helps to keep my heart rate down, so let us work with that theory for now.
Feeling alert again, will have a shower after lunch and wait for Emma to visit :-) Feeling good otherwise, not even too anxious about my buttock injection later :-)
Talk about a wake up call! Just had my rear end injection for the day. Doesn't hurt so much after now :P Still not exactly a nice way to wake up mind, but at least now it is over.
Almost had a decent sleep for once too, hehe :-P
Mum and Dad just came to visit, bought some rice crackers for me :D Every one has just left though since visiting hours are over.
I am feeling a little undecided. That is one thing I don't like about chemotherapy. I am not sure what is good any more. I am not sure if I should be eating more, or will it just make me worst. It is hard to get comfortable too. My mouth feels weird and stomach about the same. Sometimes the smell of bread makes me hungry, sometimes it wants to make me throw up. Blah :-/
I am still going pretty well though, still hungry, though my appetite isn't as big as before. I know the rice crackers parents got for me are my favourite, but looking at them gives me no special desire to try one. Maybe later when I am hungry.
Going to try and get some sleep, bit tired.
Woke up just then feeling a little hungry. Had some of them rice crackers. They are as good as I remembered! Had 2 packets in fact, 4 in total! If I was well I would keep eating them, but I am not so I am going to save them for the mornings... unless I get even more hungry! :-P
Them enzyme mouth wash really helps to restore my appetite by restoring some sense of normality of having saliva and stuff. Go go chemical engineering.
BIG PARTY!!! :-D All in all about ~12 people turned up to celebrate my delayed 21st, much to the dismay of the wardens who at one point had to close my door due to noises :-P
The Marist Boys turned up - Glen, Eflo, Rene, Shaun, Gringo, Luke, Bryan. They chipped together and bought my LEGO MindStorm! :-D :-D Something I have secretly wanted ever since I saw at a science fair in Y12. Not to be out done David, Eddie, Shaillia, Daniel, Victor K and Victor W turned up too. David and Eddie got me a pair of very appropriately Steve books very appropriately wrapped in LEGO :-D Shailli and Daniel got my chocolate which has already been consumed since I woke up with a hunger. Oh and books, I got more books from Daniel.
There was also a cake, which I ate and kept down as I promised to Glen. It was a wonderful vanilla mud cake, which every one had some of and Emma eventually taking ownership of it :-)
It was simply wonderful having all my friends around me, being themselves with the usual banter and talk. Even though I was in hospital I felt like top of the world - well loved and cared for. Can't wait to get home and start on the MindStorm and start reading them books!
Every one thoughtfully left after my dinner, at which point my energy was visibly sapping away. That was when Victor W turned up with two unexpected birthday cards from my Management for Engineer's group! I am still deeply moved by the good will of people I have only just met and got to know! We (Emma, I, Victor) ended up watching 1 episode of Futurama together, then Victor left for home.
Mum and Dad turned up at 7:30pm, and started cleaning the presents and stuff in my room to reduce chances of an infection, which still hasn't happened yet. Though I should clean this keyboard. We talked about me coming home, something I look forward to, and alternative sleeping arrangements at home due to my room being infested with cat hair and associated bugs. Poor Lili, she won't be allowed to sleep in the same bed as me for a long time :-( Hopefully she will forgive me.
I did get kinda hungry last night at about 9:30pm, and the nice nurse got me a pack of Smiths Original Chips which I ate. I think it is a good sign I am still getting hungry and wanting food, though the amount of farts I made yesterday is probably a sign I should keep off the oily stuff!
• wcc 0.3 • Hb 92 • Plt 41
You can all probably tell mornings is my best time :-) I am going to take advantage of these times and walk around to keep my leg muscles from wasting away, and also writing this entries that would normally consume too much of my energy. Other than the tiredness I am fairly hale as things go.
On the menu today: platelet and full blood infusion, then Lumber Puncture. This is day 5 of 14 of Induction, 2 out of 6 shots have been taken, and the last LP is today (hopefully!). Still no infections :-D
Oh I weight in at 65.2kg this morning, or something like it. Back to my "normal" weight it seems.
Hate LPs mainly because of the 4 hour on-your-back-time. Had the last LP for a while at 12pm, and just got off my backside! Missed lunch completely, I am starving now :-P Dad is bring 2 fresh burgers, mmmmm food. Had a pack of chips thanks to John and his friend who kindly came to visit. Unfortunately I am not able to eat their wonderful home stew because I was stuck on my back.
One of the medical students brought me a nice print out of average adult blood chemistry so I can compare myself to a normal person, as well as to my own "normal". The three I am normally interested in is Hb, wcc, and Plt. In a normal person these are:
Nothing of great import happened after my last entry. I was too tired to do anything but sleep and sleep and occasionally wake up to use the bathroom.
Feeling somewhat more energetic tonight, and I think I will mentioned to the doctors my night sweats too. I weighted 66.7kg this morning, a little less than yesterday, but that might have been due to me passing urine.
Hungry right now actually, hungry enough not to be able to keep sleeping. No idea when breakfast will get here. Hopefully soon :-) This is day 4 of chemotherapy and I still have my appetite :-P Apparently my stitches for my Hickman's line come out today, it would be nice not having that around.
I am also expecting lots of visitors later this evening, so I am going to conserve my strength during the day as much as possible so I can at least be alert when they are around.
The effects of chemotherapy are becoming more readily felt. My mouth feels like it is full of cotton. This probably has something to do with the fact I can't produce saliva so well now due to the drugs. I have found the Biotene mouth wash to be an excellent way to temporarily relieve the discomfort. I believe it has something to do with the fact contains the same enzymes as found in normal saliva. The getting tired bit is something I think every one has noticed about me :-) Bit annoying if you ask me.
Now I shall wait for my breakfast, something I have learn to look forward to... hospital stay is almost making my healthy! :-P
Mmm, breakfast! Had 2 toasts because I asked for it, and 2 jam! Love it! This is my favourite combination I think: 2 whole mean toast and jam spread, milk + weebix, orange juice and whatever special they have. Feeling full and energetic now, and my heart rate hasn't gone up. So it is definitely something to do with the chicken soup parents make me.
Not hungry right now, but I expect I will be asking for a sandwich come 11am :-P
Had one hell of a dizzy spell earlier. Got up, went to the bathroom and barely made it back to the bed. Felt really light headed, ears were ringing, couldn't get enough breath.. the works! My heart rate also doubles when I stand up for some reason. Not entirely sure why yet, but it is most likely due to the fact since Toby has been disconnected my fluid level has plummeted since in some ways I have become dependent on Toby for hydration. Now that I am drinking near religiously every hour I feel much better.
I think my appetite is back too, I am hungry for lunch.. and its here! :-D
Time 7:51am Its my 21st birthday today :-) Many people paid their greetings online, and many more will tomorrow in real life! Yay :-D
Already got some kickass presents from Emma.
I can feel the effects of chemotherapy coming on. My mouth feels like it is stuffed full of cutton as the drugs drastically reduced the rate at which cells turn over in my system. I can also feel my heart rate go up any time I eat as my digestive system requires more and more oxygen to perform its task, again due to the lowered cell turn over rate.
But these are rather minor details. The one I hate the most is when it makes my drowsy and unable to concentrate.
Nothing on the pain charts today, should be a nice peaceful day :-D
Got examined by a doctor-in-training and also by Dr Allison and Dr Trotman. They expressed some concern over my higher heart rate when I eat and have told the nurses to pay more attention to my condition when I do eat food. Otherwise I am in good shape, with Hb of 92, wcc of 0.5 and platelet of 50. Something like it, I will get more accurate results off them later.
Since I don't have anything till Friday chemotherapy wise, I might be off Toby tomorrow. I am expected to have another injection into my bottom tomorrow, and a Lumber Puncture Friday. They aren't so bad :-)
Just had a shower, feeling much more energetic than I was earlier. I think it is for certain now that chicken soup as my parents make it is what is increasing my heart rate during meals. To this end I have asked them to stop making it for me until I am better/stronger.
John and his Mother visited today, and bought gifts for my parents! I am constantly been amazed at the generosity and care of the people around me. I never knew I was so well loved! *sniff*
Felipe came to see me at about 6:30pm, bring along his camera. We had a mini-photo shoot so we can chose a picture (or two) to release to the world, in return for 12 great Sydney atomicans donating blood in my name. We also had interesting conversations on the philosophical underpinning of teleportation and replication.
Every one left when visiting hours was over. I tired easily these days from chemotherapy. It is hard to keep alert after meals. My best times seem to be right after I wake up, and about midnight onwards. Speaking of being tired, I think it is time for another nap...
After my second big dinner, I had a shower then after a nap. I felt fine at the time... until the chemotherapy drugs kicked in at 8:45pm or so. I started feeling really naesaeous then, had problem breathing, extremely high heart rate and almost fainted when I got up to use the bathroom. Then at about 10:00pm my dinner up came my dinner. All of it. Biggest spew I ever did :-P Fortunately this didn't tear my stomach lining or anything, and the nurses having been informed of how I was feeling gave me a bucket. I did however develop a nosebleed from the vomiting, and this lead to transfusion of 8 units of plalelets and some full blood transfusion which is still going at the moment. Because of my earlier allergic reaction to platelets they gave me some pre-medication which knocked me out pretty good. All I really remember is:
• Feeling like crap, can't breath properly, high pulse, head ach, sleepy • Waking up, felt better, getting on line, getting home wifi router working,manually instructing cousin to be my disc changer. • Sett up a temporary ssh tunnel to do some remote router adminstration, opening up a new port on the router incase power goes out again, and talking to a few people on IRC shortly. • Went to bathroom, almost pass out, asking for the bucket. Got given bucket, used bucket, starting to feel somewhat better. • Seen doctors, trying to stop nosebleed. Fell asleep. • Woke up to see my blood being taken. Fell asleep. • Woke up to see platelets, fell asleep. • Woke up needing to use toilet, given bottle to use because they didn't want me moving around. Fell asleep. • Woke up to have my meds, nosebleed stopped, feeling good with a dry throat. Fell asleep. • Woke up to my breakfast, ate breakfast, writing this entry, not sleepy no more.
I wish I can put yesterday down as Pain Free Day Number Four, but that would be lying to myself. However, it wasn't such a bad day :-)
Time 8:13am Feeling good again, looking forward to the day as I do, even if it has chemotherapy all over it. Tis but a obstacle to get around. I had worst.
My remote DVD burning seems to have worked. Going to try and have the disc delivered to me when Dad comes :-) The burn was done using growisofs which is a great program!
One of the nice doctors chased my up blood test results from last night, so here they are:
• wcc 0.5 • Hb 74 • Plt 5
This time though we have units! wcc is 10^9/L, Hb is g/L and Plt is 10^9/L. Still no errors though :P My body weight this morning I think was 67.7kg.
Woke up to test shots of L-asparaginase in my arms to test for allergic reactions. This drug hurts a bit when it goes in, sort of like chilli injection under the skin... except not. The inter-dermal shots in my arms weren't so bad, but apparently the inter-muscular shots in my rear end will be somewhat more unpleasant. While I do not look forward to it, nor I do begrudge it - no pain, no gain! :-D
I make a poor patient to visit these days. I simply sleep for hours as soon as my head hits the pillows due to the drugs. Though now I am awake and fairly alert, so I am going to get as many things organised now as possible before the drowsiness hits me again.
The L-asparaginase injections didn't so much hurt as just been weird. The initial injection burns, but then quickly goes away. It is the continued muscle spasm afterwards which is plain strange. Other than that it is not so bad, and it is only 3 times a week :-)
Mum got my a nice balloon too for my birthday, my first! :-D Emma got me some kick ass presents, including LEGO kits which I have always enjoyed despite the age range recommendation of 2-10 :-P Pictures tomorrow when I am more alert.
Finally! The drugs are wearing off and I can stay alert! Currently helping Victor with his programming assignment, a good sign of my alertness returning. How predictable that I become more alert when it approaches midnight :P
Nothing much to report, all is quiet on the Western Front as they say... except for the word clopen!! Some people use it to mean a set that is open and closed. I will ask Emma to explain this one when she has time.
Curtsey of deathk from atomic, below is a nice condensed information sheet you can just print out and stick around the place to encourage people to donate blood :-) It is rather NSW centric, so please adjust where required to it applies in other states :-)
PLEASE GIVE BLOOD
Hi, it’s . I have a friend who has just been diagnosed with Leukemia. He needs almost daily transfusions of platelets. Eight blood donations are used to make up 1 package of platelets and he needs 4 in one go. (Other parts of the blood donations are used for other vital transfusions).
Will you think about giving blood sometime in the next couple of weeks?
It’s faster if you register online. Donation takes about 5-10 minutes but there is the examination beforehand which takes 15 mins and you are requested to wait 15 afterwards for monitoring of your condition.
Locations: • Sydney – 153 Clarence St (Mon 8am-3pm, Tue 11am-6pm, Wed 7:30am-3pm, Thu 11am-6pm, Fri 7:30am-3pm, Sat 8am-3pm) • Parramatta – 4 George St • Chatswood – 1 Spring St • Liverpool – 50 Macquarie St • Nepean – Nepean Hospital Main West
There are also mobile locations – see the website for details
You can’t give blood if you: • Had antibiotics in the last 5 days • Had a blood transfusion in the last 12 months (have you had surgery?) • Had body piercing in the last 12 months • Had ear piercing in the last 24 hours • Had cancer in the last 5 years or have a cancer history • Have chicken pox • Have chronic fatigue syndrome • Have a cold • Have a cold sore • Have been imprisioned in a correctional institution in the last 12 months • Have cystic fibrosis • Have dengue fever • Have had dental treatment in the last 24 hours • Have diabetes controlled by insulin (conditions) • Have diarrhoea • Still under the influence of recreational drugs • Have fibromyalgia (conditions) • Had glandular fever in the last 12 months • Had a heart attack • Had hepatitis in the last 12 months – extra testing needed after • Have herpes – current primary or acute episode • Had leukaemia or lymphoma • Had liver function ALT test too high and not yet had doctor’s ok • Had lyme disease and have not yet had doctor’s ok • Have multiple sclerosis • polycythaemia (rubra) vera • Had ‘dangerous’ sexual activity in the last 12 months (male –male, with male bisexual, with sex worker) • Had surgery with blood transfusion in last 12 months • Have systemic lupus erythematosus • Have travelled to areas with high risk of insect/animal –borne infection which can be symptomless. • Have had sex with a person who lives in a country/area with high risk of insect/animal borne infection. • Have lived in the UK between 1980 to 1996 for cumulative period of 6 months. • Have received blood transfusion in the UK since 1/01/1980
Realised the person who keep calling my own phone is Kevin, called him back and had a nice long chat. Might see Kevin during Easter Break, that would be awesome.
Also managed to ipod Linux running on my ipod nano, except then I couldn't boot back into Apple's default OS. That was kind annoying since podZilla isn't quite a full replacement yet. Because I couldn't boot back into Apple's default OS I couldn't format the ipod nano using the dd trick. In the end I had to boot the nano into Disk Mode and use Disk Utitlity to wipe it clean again.
I think I will wait for ipod linux to mature a bit before I try that again. It was kinda cool having linux run on my nano, though the wheel sensitivity and button debounce needs a lot more work if it wants to be as intuitive as Apple's default.
Woke up, had my pills, weight. 67.5kg today apparently. Waiting for breakfast. Going to ask Dr Trotman more about my chemotherapy protocol, calling Centrelink to claim some welfare and hopefully stay alert and well enough to receive my last batch of visitors for a while.
On the topic of visitors, those planning on visiting, please observe the following:
• Please do not come with a flu/cold/sickness - I am very weak at the moment immune system wise! • Please do not bring flowers or plants etc - they carrier bacteria/pollen etc • Please do not come in big crowds - I know it is hard to keep away, but I need to avoid crowds, especially in my room!
That is all :-P Wait, no,
Donate blood and keep a C coder alive!
Dr Allison came in and reviewed my weekend activities :-) My body is responding very well to the oral chemotherapy drugs with wcc dropping to 0.8 today. Dad bought some excellent home food again, along with freshly made chicken dumplings! Nurse Lee got some samples from my father too :-)
• wcc 0.8 • Hb 83 • Plt 11
They will starts giving me more platelets when my platelets drop below 10. As you can see my red blood cell count is lower, which means I will tire sooner these days. Dr Allison will come and discuss my protocol with me sometime today too.
I have also been informed that there will be a weekly Lumber Puncture... *sigh* I shall live :-) I am weight 67.5kg or so this morning too.
Nick (B) came to visit at 12pm. We had a most wonderful conversation, one of the more "normal" ones I have had - talking about University, mathematics, physics :P He also sat in when Dr Allison came with my protocol explained it. Nick just left, after listening to my ranting for a good 30 minutes :-P Now I will write down some notes about my protocol before I forget them:
I am on a paediatric ALL protocol which means it is design for children and has much higher dosage and intensity, which is good! I will get the following drugs during induction:
• dexamethasone - slows down cell turn overs by inhibiting cell division. Non-specific drugs which affects all system - mouth, hair, throat etc. • vincristine - same as above. • daunorubicin - same as above. • L-asparaginase - a drug which is leukemia specific, it slows and destroys leukemia cells. • methotrexate - another non-specific cell turnover slow down agent. • hydrocortisone - same as above. • ARA-C - leukemia specific drug. • tropisetron - nausea drugs. • maxolon - same as above. • decadron - same as above.
Once past induction most of the same drugs are given in cycles in lower dosages to continue killing leukemia cells. I was also told relapse occurs due to any residue leukemia cells... so faster and harder is better!
Kevin also just called. There is something unique about Kevin's character which really makes me feel better afterwards. There is something about Kevin :-P
Tired now as you can probably expect from my Hb count and the fact I been up since 6am. I will try to catch some sleep before some doctor in training comes in and quizzes me.
First chemo drugs today. There is one which makes me get constipation.There is one which will give me pins and needles. Oh and there is one which makes my urine go red :-P There is only one drug which hurt, and that is a 3 times a week injection into my butt. It could be worst, it could be 3 times a day!
Anyways, now to wait for 30 minutes for the drugs to be delivered.
I didn't end up getting any platelets because I do have a reaction to them so the doctors thought it was best I didn't have to deal with all that at like 2am. They were right since I am still right rain.
So this makes 01.04.2006 Toby Free Day Number Two and Pain Free Day Number Three. Hopefully this will be Pain Free Day Number Four.
Started watching Battlestar Galatica too on recommendation from Chris. I like it so far.
Nurse Lee took some blood from me. 15mL too much actually :-) She also told me that platelets are precious these days. A while back when hospitals ordered platelets, every one gets 6 units. Now every one gets 4. Not enough people are donating blood these days.
Donate blood, keep an EE alive!
Though we are lucky in Australia at least blood is free. In Malaysia, you get given 1L of blood, your relatives have to give back a 1L of blood!
Emma came to visit at 11am and stayed until just then. We had good talk and worked many things out. Mum came to visit with Dad along with some good home cooking at 6:00pm. They all left just then since visiting hours are over.
I was offered home leave today, but didn't take it since it would have only been 2 hours or so, and I will probably just gather more bruises! Toby is back too, they are pumping 100ml of water into me per hour to pre-hydrate me for chemotherapy tomorrow. I have to start keeping track of my fluid balance again too.
Other than that, today was an excellent :-) It was relaxing and stress free. Wonderful to spend time with Emma alone also. For now I think I will work on getting Linux on my iPod and watching more BattleStar Galatica. Too tired to do more BRL-CAD. That is also an excellent piece of software mind.
Oh, Toby is back. 100ml of salt water per hour. While this won't be Toby Free Day Number Three, it is Pain Free Day Number Four.
After Emma left I had a long and interesting talk with James (H). I was also informed of my blood test results, and they are:
• wcc 2.9 • Hb 95 • Plt 39
Slept at half past midnight or so reading Fallen Dragon by Peter F Hamilton.
Nurse Lee is about to take my blood sample. If all goes well I can go home for a few hours. I will make sure to bring Out! for nurse Lee since she loves novels with lots of killing. Slightly disturbing actually, hehe.
Emma's mother will come visit today, hopefully our parents can meet. I do however wish it were in better circumstances.
Nurse Lee just took some blood, hopefully the numbers will be back soon and the doctor will let me go for a few hours. Nurse Lee and I found we have some common interests where books are concerned. I will try to find something at home she might find interesting and bring it back for her.
Blood test result came back:
• wcc 1.6 • Hb 94 • Plt 24
Day leave might not be an option now :-/ My platelet and wcc count is about half of what they were yesterday.
Doctor came and said while my platelets are low, as long as I am not bleeding or have a fever, I should be good to go. My liver is apparently working good again o.O
Dad bought some excellent food again to supplement my hospital diet. Apparently I can check out in about an hour and half, though I should be back at 6pm today. Hopefully I can spend some time at home packing, comforting Lili and get some gaming done :-)
Also be kind of interesting having my parents and Emma's mother meet :-P
Dad has reassured me the business is going well, and it will be well. I am rather relieved to hear Dad back in the game so to speak.
I am home! :D :D As long as I go back before 8pm, the doctors won't be crossed with me :-)