Sorry about lack of recent updates. Still hard to use my laptop so I am confined to using my pda.
Here some 3 days worth of entries -
First day of consolidation chemotherapy. Thought it would be quick - but it turns out I will be here all day. Thankfully I got my PDA with me. Though not sure how long the batteries will last.
Dr Trotman introduced Dr Daniel who specialises in young adult ALL. He will be looking after me when Dr Trotman is away. Dr Nicole will also be dropping by.
Every one here keep giving me looks - its because I have hair! :-P It seems nearly all out-patients start with no hair.I got lucky in that my hair actually grew longer after I had it cut.
Just got up to go to the bathroom - an exercise in itself. Damn I am weak. Thing is I don't know why I am so weak: is it not enough exercise? Is it the chemotherapy? Is it my body responding to less steriods? Is it the some 5kg of muscle I lost? Why did I lose them? I did excercises because everyone keep saying I wasn't excercisesing enough, all the way till last week when I could barely stand. Could it be something simple like not enough liquid? Or just not eating enough?
About to get my first consolidation chemotherapy. About to get very sleepy...
Dr Daniel came and saw me just then. He said the weakness is most likely due to chemotherapy and my body responding to the tapering steriods.
Only getting part chemotherapy, my liver function is a little worst than before.
Fell asleep for a bit. Such an unexpectedly long day. Tomorrow I got a LP, in fact I get one every Tuesday. Now to figure out something to do for 4 hours on my back. Looks like SASSy is going to be completely written in pocket word. Just got to bring the charger tomorrow.
Dr Chapman came and saw me. My blood test for my liver functions are abnormal - but that might be due to all the drugs. The more important signs are my appetite, any vomiting or runs.
For this week they will carefully monitor my liver function while selectively stopping certain antibiotics which do affect my liver.
Got to CRGH on time despite a nosebleed, depending on my blood results I might not get a LP today. Dr Trotman wants to push on of course, and so do I!
Feeling better today, prepared to spend all day at hospital. Got books and mirrored bash.org. :-p
There are many volunteer services here for cancer patients and their carers - must donate to them.
Dr Daniel came and saw me for a bit. Edna wants more liquid in me again! I am drinking! Bah!
Note to self - never argue with Edna. Though tomorrow Edna might be happy for me to drink 5 bottles of water (3.5L) instead of having 3L of fluids pumped into me.
Going to try and improve my input speed too. Its almost 11am, LP soon I hope, cause with LP I have be on my back for 4 hours!
There seems to be lots of Cantonese speakers to the point the English speakers are trying to learn it :-p
Spinal tap time! Dr Daniel is doing it. This means my clotting is fine. My liver tests are also holding which is good. Things aren't getting worst - sign its the drugs making them abnormal perhaps. Still no gleevec yet, or the other drug though. A liver specialist will see me eventually.
Edna is getting impatient for Dr Daniel to get started on the LP :-P
Here we go!
Dr Nick and Dr Daniel did my LP - the painless operation so far - in fact I don't think its possible to have an operation with less discomfort.
Got KFC lunch out of my LP :P
Woke up to my ara-c injection, Edna said tomorrow if all goes well then its just taking blood, wait for results and then my injection and done! But I suspect my liver tests will cause delays again, but it would be nice to find out more about it. Should ask about whether this is normal - having liver problem like this.
1 more hour to go until I can go. Classic English novels are quite a change from what I normally read.
Apparently my ALT level is sky high. My liver's other functions are working fine though. I wonder if there is a correlation between me coming off steriods and my ALP levels. Though one must remember: Correlation is not cause!
Dr Alice Came and saw me and said that if my ALT level continues to be high they would like to do a liver biopsy with ultrasound aid - it will give them a better idea of what might be wrong. Though the liver is a very forgiving organ. Also some drugs can cause my ALT level to be elevated too.
Dr Alice came again to see me. My clotting factor is good which means my liver is still working fine. I saw the graph of my ALT level - they started going up on the 26.04 even before my dex started going down. Something caused it go skyrocketing over the last few days.
Edna came with good news! My ALT level went down! Edna won't give numbers yet but I will get them! Also got some tips for fluid intake - drink 2L before 4pm then taper off so I can get a good night sleep.
Just had my injection of Ara-C. Once Dr Daniel sees me I can go home. Yay! Getting blood tomorrow, my red blood cells are a little low. But thats tomorrow. Today won't be another 5pm day.
Still waiting to see Dr Daniel, apparently another ultrasound is being arranged for Friday.
Still waiting for my perscriptions and my blood numbers...
Alt 505 down from 705!
As long as long as it keeps coming down doctors are happy! I might even get Gleevec today! Dr Trotman is currently being consulted. Hope things continue to improve! More fluids seems to be the key. Or grapes...
I get Gleevec today! Just got to wait for pharmacy to open at 2pm.