May 31, 2006

31.05.2006 - in and out

Today was a quick day. Got there at 8:30am, got into clinc at 9am or so. No bloods, just my injection and dressing change for my hickmans and I was off home at 10:35am or so.

Got home, played some darwinia and read more Discworld novels. A fast day is a good day! Tomorrow is my day off, and hopefully Friday won't take too long either, even though I have a meeting at RPA.

Cheers,
Steve

May 30, 2006

30.05.2006 - what missing entries?

Always a believer in non-linear time... :P

Anyways, today was LP day down at radiology. The procedure itself was unpleasant but nothing compared to the reaction I got after. The whole hyper sensitive skin/raw nerve/muscle spasm thing kicked in and I was thrashing in my bed like a fish out of water barely able to breath.

They did offer me morphine at one stage down at the clinic, though I declined the offer. Neurology came down to see me and I finally had that hammer-to-the-knee test! Was kinda cool having all my reflexes tested. It was eventually decided that chemically the only difference between a normal LP and X-Ray assisted LP is that they add a contrast in to make sure they are "in the spot". So next time they are going to do it with out the contrast if they do it again and see if it helps. I sure hope it does because it is not a comfortable thing to go through again, and I got 4 more LPs in this cycle!

Looking forward to Thursday, my day off again. No idea what June will be like for me chemotherapy wise. But it says a 9 week cycle on my protocol, so probably more of the same. Then eventually, my bone marrow transplant I believe, something for which I have a meeting booked for this Friday to discuss the options etc.

The "Missing May Entries" will find their way here eventually, until then just ignore the jump in my diary entries :P

Cheers,
Steve

May 21, 2006

01.05.06-04.05.06

1/05/06

Time 12:02pm

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.



12.44pm

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?



1.01pm

About to get my first consolidation chemotherapy. About to get very sleepy...



1.20pm

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.



1.54pm

Only getting part chemotherapy, my liver function is a little worst than before.



Wcc 6.8

Hb 108

Plt 88



3.51pm

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.



2/05/06

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.



10.11am

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



1124am

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.



1135am

Edna is getting impatient for Dr Daniel to get started on the LP :-P



Here we go!



117pm

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



Wcc 7.2

Hb 101

Plt 105



3:53pm

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.



4:47pm

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!



3/05/06

9:25am



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.



10:56am

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.



11:28am



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.



12:51pm



Still waiting to see Dr Daniel, apparently another ultrasound is being arranged for Friday.



1:22pm



Still waiting for my perscriptions and my blood numbers...



Wcc 3

Hb 94

Plt 92

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...



1:44pm



I get Gleevec today! Just got to wait for pharmacy to open at 2pm.



4/05/06



9:25am

Dr Daniel just came and got me to sign a form to check for HIV - they are systematically eliminating possible causes even though I am a registered blood donor.



Nurse Maryane is looking after me today and Dad is with me. My preliminary blood test results are back quickly today



Wcc 1.1

Hb 88

Plt 89



Its nice to see some out-patients who can come in themselves - they look vital and strong. I will be like them, not having to always have some one with me.



My hair is finally starting to fall out too. Delayed reaction to chemotherapy.



11:03am



Getting second set of blood transfusion - only getting red blood cells, so I will perky today. Getting my injection of Ara-C soon. Hopefully then I can go home!



11:40am



Got 2 panadole cause my temperature is up from the blood.



12:16pm



Edna is going to check my backside! Eeep! Strangely no one is worried about my ALT levels today... Also just had my last Dex! No more steriods!



12:25pm



My ALT levels are holding which is good. Time for my injection. Then Edna will check my backside to see if anything is wrong.



12:55pm



Edna examined my backside. She informed me I am keeping my backside very clean, and told me to be very careful now - my wcc is very low. Any infections will delay my chemotherapy, which is bad! Also told to cut down on my fluids because my salt levels are bit low. Just drink normally.



Once the blood finishes and Dr Daniel is happy I can go home. That will be good. Judging by the fact Dr Alice didn't drop by everyone is happy about my liver.



1:23pm



Take panadole with dinner if I need it. The red blood cells will make my temperature go high - not a fever.



Almost time to go home!



2:07pm



Home. Feeling all alert and stuff from extra red cells. Bah! Out-patient business ruins my entire meal plan - bleh at sandwiches. Now the dex is all gone I will be less hungry. Oh well it means I get to eat more food that I like.



2:16pm



Dr Daniel called, cut Gleevec down to 400mg until liver tests improve more.



3:24pm



ADSL just dropped out. Not even an active line. Blah!

May 13, 2006

A quick hello

Just a quick entry to let every one that I am still around. Not feeling great at the moment, but well enough to get online and post now that Emma has bought my laptop.

The doctors are happy with the way everything is going even though sometimes I don't feel so great all the time - some times I just feel plain wretched. My temperature which has been sky high the last few days is better now, swing about 37.

Cheers,
Steve.

May 04, 2006

04.05.2006 - No drama day

9:25am
Dr Daniel just came and got me to sign a form to check for HIV - they are systematically eliminating possible causes even though I am a registered blood donor.

Nurse Maryane is looking after me today and Dad is with me. My preliminary blood test results are back quickly today

Wcc 1.1
Hb 88
Plt 89

Its nice to see some out-patients who can come in themselves - they look vital and strong. I will be like them, not having to always have some one with me.

My hair is finally starting to fall out too. Delayed reaction to chemotherapy.

11:03am

Getting second set of blood transfusion - only getting red blood cells, so I will perky today. Getting my injection of Ara-C soon. Hopefully then I can go home!

11:40am

Got 2 panadole cause my temperature is up from the blood.

12:16pm

Edna is going to check my backside! Eeep! Strangely no one is worried about my ALT levels today... Also just had my last Dex! No more steriods!

12:25pm

My ALT levels are holding which is good. Time for my injection. Then Edna will check my backside to see if anything is wrong.

12:55pm

Edna examined my backside. She informed me I am keeping my backside very clean, and told me to be very careful now - my wcc is very low. Any infections will delay my chemotherapy, which is bad! Also told to cut down on my fluids because my salt levels are bit low. Just drink normally.

Once the blood finishes and Dr Daniel is happy I can go home. That will be good. Judging by the fact Dr Alice didn't drop by everyone is happy about my liver.

1:23pm

Take panadole with dinner if I need it. The red blood cells will make my temperature go high - not a fever.

Almost time to go home!

2:07pm

Home. Feeling all alert and stuff from extra red cells. Bah! Out-patient business ruins my entire meal plan - bleh at sandwiches. Now the dex is all gone I will be less hungry. Oh well it means I get to eat more food that I like.

2:16pm

Dr Daniel called, cut Gleevec down to 400mg until liver tests improve more.

May 03, 2006

Consolidation diary spam

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 -

1/05/06
Time 12:02pm
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.

12.44pm
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?

1.01pm
About to get my first consolidation chemotherapy. About to get very sleepy...

1.20pm
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.

1.54pm
Only getting part chemotherapy, my liver function is a little worst than before.

Wcc 6.8
Hb 108
Plt 88

3.51pm
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.

2/05/06
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.

10.11am
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

1124am
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.

1135am
Edna is getting impatient for Dr Daniel to get started on the LP :-P

Here we go!

117pm
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

Wcc 7.2
Hb 101
Plt 105

3:53pm
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.

4:47pm
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!

3/05/06
9:25am

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.

10:56am
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.

11:28am

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.

12:51pm

Still waiting to see Dr Daniel, apparently another ultrasound is being arranged for Friday.

1:22pm

Still waiting for my perscriptions and my blood numbers...

Wcc 3
Hb 94
Plt 92
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...

1:44pm

I get Gleevec today! Just got to wait for pharmacy to open at 2pm.