Bone Marrow Transplant Day -6
Thursday
25/09/2003
Week 1

Well the first day of Bone Marrow Transplant (BMT) treatment has finally arrived. There are 5 days of high dose chemotherapy before the actual BMT, so the countdown is on. See the attached drug chart to see how busy I will be taking my assorted pre-transplant medications over the coming week thus turning myself into a human maraca. The upside of this part of the treatment is that it can be done at home. The hospital has a home care service where a nurse comes out everyday to take bloods, change my CVC line dressing, and see how I am doing. Sponge baths, however, are not included in the service. The chemotherapy drugs to be used to clean out my bone marrow are Busulphan and Melphalan. There are 4 days of the Busulphan and 1 day of the Melphalan. The Busulphan is a syrup and surprisingly is taken orally. It tastes very much like a strawberry milkshake except that the milk has been substituted with water and there is very little strawberry flavour. To minimise possible nausea I have been given some Maxolon to take with the Busulphan. Also, I have to take Clobazam (an anti-convulsant) as the Busulphan can cause seizures. The first of the 6 hourly doses started at 6am which is good because I enjoyed my Busulphan whilst watching the sun rise. I can hardly contain my excitement for tomorrow morning's dose. My girlfriend Sandy's parents (Rob and Di) dropped by to baby-sit me whilst she went to the gym. The hospital requested a 24hr urine collection to check on my kidney function. The major benefit of this is that I can have a wee without leaving the couch (as long as it ends up in the given bottle). However, this did not go down well with the visitors. After the first day of the chemotherapy I still feel pretty good. No nausea or crudness, just a little drowsy from the Clobazam and the lack of sleep.

Blood Counts:
1.2
Bone Marrow Transplant Day -5
Friday
26/09/2003
Week 1

Up at 6am again to have the first delicious dose of Busulphan for the day. Today, the doctors have also got me started on Cyclosporin. Boy are these tablets big. You certainly don't want these babies to go down the wrong way. They don't smell too good either. Had an exciting trip to the hospital today to get a platelet transfusion (the platelet count below is pre transfusion). Apparently, they have to keep my platelet count above 30 whilst I am receiving this drug called Fragmin. Just like a man with a dart board for a stomach, I was so excited to find out that Fragmin is a subcutaneous injection and is required for the next 10 or so days. To top it all off the Fragmin stings for a couple of minutes after it is injected. Sandy went to the gym again today, so more baby-sitting duties for Rob and Di. Finished off the 24 hour urine collection. I only managed to fill just over half of the large bottle so I don't think I will win any prizes. Well, 2 days of chemo down and still feeling good.

Blood Counts:
White Cell Count
1.3
Neutrophils
0.13
Haemoglobin
108
Platelets
27
Bone Marrow Transplant Day -4
Saturday
27/09/2003
Week 1
8 Busulphan shooters down and sadly still 8 to go. On the bright side only 4 more after today. It was a beautifully sunny day today and as such, managed a 20 minute walk outside with Sandy. Felt a little tired after the walk so I was able to settle in on the couch and watch Brisbane demolish Collingwood in the AFL Grand Final....Yay!!! Mum dropped by with a delicious lunch which was excellent because we were too caught up in the finals fever (or maybe we were just too darn lazy) to cook. Had a couple of friends (Bryson and Liz) drop by in the evening. They were happy that the 24hr urine collection had ceased. As per the last 2 nights, enjoyed a Busulphan nightcap before going to bed. Today's chemo Crudness Factor was 2.
Blood Counts:
White Cell Count
1.3
Neutrophils
0.13
Haemoglobin
103
Platelets
47
Bone Marrow Transplant Day -3
Sunday
28/09/2003
Week 1

It is the final day of the Busulphan and I am surprisingly still feeling good. Time sure flies by when you are on a Busulphan drinking binge. Have to say though, that the side effects were nowhere near as bad as previous chemotherapies that I've had (ie no nausea or general feeling of crudness). However, the 6 hourly doses of Busulphan (plus the other scheduled drugs) has made it hard to get some decent sleep and so I am somewhat tired. Our mate (James) dropped by for a lunchtime BBQ and also cleaned up all our biscuits and lollies. One final Busulphan taste delight and I am off to bed. I was looking forward to not having to get up at 6am tomorrow but in preparation for tomorrow's dose of Melphalan I have to wake up early to have some Dexamethasone and Ondansetron.

Blood Counts:
White Cell Count
1.4
Neutrophils
0.07
Haemoglobin
100
Platelets
41
Bone Marrow Transplant Day -2
Monday
29/09/2003
Week 1
Got up early this morning to have my dose of Dexamethasone and Ondansetron. Had to delay my morning dose of Cyclosporin until the home nurse arrives because the hospital wants to check on my Cyclosporin levels. The nurse came by around 11:30am to do the usual blood tests, change my dressing and give me the intravenous Melphalan. The Melphalan is the last of the chemotherapy that I will be getting for this treatment...Yay! My brother's partner (Jo) brought some super soup and bread around for dinner and earlier in the day she brought around baby Owen (my nephew) and some Sara Lee Chocolate Bites (which are like little drops of heaven and are highly recommended). Crudness Factor has increased slightly to 2.2 (probably because of the Melphalan) so am still feeling reasonably good.
Blood Counts:
White Cell Count
0.7
Neutrophils
0.1
Haemoglobin
107

Platelets
3
6

Bone Marrow Transplant Day -1
Tuesday
30/09/2003
Week 1
Didn't get much sleep last night probably because of the Dexamethasone. For some reason my body was slightly itchy all over too, perhaps from the cyclosporin or the chemo. Ordinarily I would receive the graft infusion today. However, the timing of the bone marrow collection and the available flights means that the graft won't arrive in Perth from Hong Kong till after midnight. Some lengthy processing of the bone marrow has to be done prior to the infusion. As such I will be getting the graft tomorrow around midday. Apart from the slightly reduced amount of medications that I have to take, I essentially have a day off today. Crudness Factor has risen to 2.4 due mainly to the lack of sleep and some annoying stints of hiccups.
Blood Counts:
White Cell Count
0.3
Neutrophils
0.05
Haemoglobin
103
Platelets
26
Bone Marrow Transplant Day 0
Wednesday
1/10/2003
Week 1

After months of waiting, the actual transplant day has finally arrived. Got into the hospital at about 10:10am. Had the usual blood tests and dressing on my CVC line changed while I was waiting for the graft. The collected bone marrow had to be processed to remove most of the red blood cells as I have anti-bodies in my blood (which can react) to the donor's B positive blood type. The bone marrow arrived at about 12pm. It is amazing to note that the donor was a small woman weighing in at a mere 39kg. However, they were able to extract a whopping volume of 1,800mL from her marrow with 1,300mL being bone marrow (and the remaining volume being made up of blood). Have to say though that after all the additional chemotherapy treatment that I had to have to control the leukaemia while waiting for the transplant, I was feeling quite relaxed. The bone marrow transplant was quite uneventful and anticlimatic as it was much like receiving a blood transfusion, even though there were 3 doctors, and 3 nurses on hand in case of complications. Had a platelet transfusion so I could have more pin cushion action from the Fragmin. Left the hospital at about 5:00pm but somehow gained an additional 13 pills to take each day despite having ceased a few medications. Hiccups are getting slightly worse, my throat is starting to get some slight irritation from the chemo, and I have a slight decrease in appetite. As such, the Crudness Factor has increased to 3.

Blood Counts:
White Cell Count
0.2
Neutrophils
0.04
Haemoglobin
96
Platelets
22

Bone Marrow Transplant Day +1
Thursday
2/10/2003
Week 2

Woke up to the sweet feeling of diarrhea this morning. Yet another side-effect of the chemo or perhaps as a result of eating too much chocolate last night. Had another visit to hospital today. Whilst I can still stay at home I have to go in every couple of days to get a low dose of Methotrexate. This drug is essentially used to reduce the effects of GVHD. However, to counteract the side effects of the Methotrexate I have to take some Folinic Acid. Also started up on my favourite injection today GCSF. This is a daily injection that I've had to have after each round of chemo since I started treatment last year. Also got given something for the diarrhea (medically it is called Loperamide, but really it is just a cork). And of course, you can't leave the hospital without having to take more drugs. However, got off lightly this time with only a 4 tablet increase. Mouth, throat and gut pain is slightly rising, but I can still eat, drink and take my tablets.

Blood Counts:
White Cell Count
0.2
Neutrophils
n/a
Haemoglobin
92
Platelets
44
Bone Marrow Transplant Day +2
Friday
3/10/2003
Week 2

Had my 6am drugs and went back to sleep. Was then woken by the arrival of the home nurse (Vanessa) at 10am for the daily blood tests and dressing change. Even though I did not have time for a shower, she did not offer me a sponge bath. Rob and Di dropped in to bring Sandy a coffee, and mum brought around some freshly cooked lunch. Originally I did not have to go into hospital today, but a large drop in my haemoglobin and platelets (see the blood counts below) meant that I had to go in for an unscheduled transfusion. Turned up at the hospital at 2pm and found the elusive exercise bike I had been chasing in my room. Just need a spanner now to adjust the height of the seat (looks as if Yoda was the last person to use it). Had a shower and got my first bag of blood at about 4pm. With the shortages at the blood bank, it took a while to get my platelets. Left the hospital around 9pm. Mouth is more sore today. Feels a little like my mouth has been lightly scalded with hot water. Crudness Factor is a cruisy 3.3.

Blood Counts:
White Cell Count
0.2
Neutrophils
0.1
Haemoglobin
81
Platelets
26
Bone Marrow Transplant Day +3
Saturday
4/10/2003
Week 2

Had a really sluggish day today. Felt quite tired and nauseous. Took the usual load of morning drugs and tried to go back to sleep. However, I would get woken up every hour or so with a really dry mouth. To relieve the dryness I would have some water which meant (you guessed it) additional toilet runs disturbing my sleep. Was due in hospital at 12pm for my second dose of Methotrexate. Was given some Ondansetron to relieve the nausea which seemed to work well. Had a few naps in between blood tests, showers, dressing changes, Fragmin and GCSF injections and consequently ended up spending about 4 hours at the hospital. The mucositis only seems to be getting slightly worse and is still not giving me much curry. The very tired and nauseous feeling today has pushed the Crudness Factor up to 4. On a good note though, I still have most of my hair.

Blood Counts:
White Cell Count
0.1
Neutrophils
n/a
Haemoglobin
105
Platelets
47
Bone Marrow Transplant Day +4
Sunday
5/10/2003
Week 2

Today was a very lazy day. I was very tired and spent most of the day vegging on the couch whilst Sandy and her parents were hard at work in the garden. Didn't have to go into the hospital for any scheduled or unscheduled visits. The home nurse (Vanessa) came out to do the usual tests and check on my general progress. The lowlight of the day was definitely when I was left with a Fragmin to self-inject (if required)!! Vanessa would let me know if I needed it after she found out what today's platelet count was, and of course I needed it!! The phrase "be careful or you might take an eye out" was all too appropriate the way my hand was shaking. Believe it or not, having to take about 30 tablets a day is starting to get tedious. Crudness Factor is up a bit to 4.3. The final thing to note is that my white cell count has basically hit rock bottom.

Blood Counts:
White Cell Count
<0.1
Neutrophils
n/a
Haemoglobin
107
Platelets
39
Bone Marrow Transplant Day +5
Monday
6/10/2003
Week 2

I have worked out that if you placed all the tablets that I have to take on an average day, end to end, it would measure about 47cm!!!! The home nurse (Sandy, and not my girlfriend Sandy in a nurse's uniform) came to see me today. My luck is definitely changing, the Fragmin injections have stopped, yay!! However, I was extremely tired today. I would get knackered just walking to and from the toilet. Consequently, spent almost the entire day in bed (resting up for "Alias" tonight). Mum dropped by with some lunch and creme caramel but I have definitely lost most of my appetite. Crudness Factor remains the same as yesterday.

Blood Counts:
White Cell Count
<0.1
Neutrophils
0.00
Haemoglobin
106
Platelets
24
Bone Marrow Transplant Day +6
Tuesday
7/10/2003
Week 2

My run of having treatment at home has come to a "sizzling" end. Over the last couple of days my Crudness Factor has been slowly making its way up and today rocketted to an intra-day high of 7 when I arrived in hospital with a scorching 39.5 degs temperature (a temperature over 38 degs was one of the conditions to start my stay in hospital). Blood cultures were taken, IV anti-biotics administered, fluids and Panadol given, had my scheduled Methotrexate, and I was off to rest for the afternoon (whilst Sandy toasted marshmallows on my head). Also had a chest x-ray and was given some platelets. By early evening, my Crudness Factor had worked its way back down to a more respectable 5. The upside of being in hospital is the reduction in tablet intake to 17 (with some drugs being administered intravenously), and not having to take those large and smelly Cyclosporin capsules. I still don't have much appetite. Hospital horror phrase of the day "stool sample and 24hr urine collection".

Blood Counts:
White Cell Count
<0.1
Neutrophils
0.06
Haemoglobin
96
Platelets
13
Bone Marrow Transplant Day +7
Wednesday
8/10/2003
Week 2
Had an interesting night. My Crudness Factor varied between 5 and 6 depending on the effectiveness of the Panadol and I spent a fair bit of time adeptly juggling the 24hr urine collection and small bouts of diarrhea. Bottomline...didn't get much sleep and perhaps came up with a new act for Cirque du Soleil. My temperature was still hovering over the 38 mark in the early morning so spent most of the morning napping. Sandy came in at about 10am. My brother (Ron), mum and dad all dropped in for a visit. I was feeling a lot better in the afternoon with my Crudness Factor dropping to 4.5. Getting a blood transfusion probably added to the drop in the Crudness Factor. The mucositis in my mouth appears better today, and it may become easier to eat in the coming few days as I will be less concerned with damaging my mouth. Maybe that will help my appetite too. Didn't eat much again today, a little bit of egg and sausage in the morning, some apple crumble at lunch, and ice cream and jelly for dinner. Some fruit juice, Ribena, Sustagen, and flavoured milk rounds out today's calorie intake. On a sad note, my hair (which has hung in over the last 3 chemo treatments) is finally starting to make it's exit.
Blood Counts:
White Cell Count
<0.1
Neutrophils
n/a
Haemoglobin
83
Platelets
38

Bone Marrow Transplant Day +8

Thursday
9/10/2003
Week 3
I felt pretty good today. Woke up at about 7:30am to find that my hair was starting to go everywhere. So today I decided to bite the bullet and shave my head (which was quite appropriate since today was also my birthday). Last year this was done using the BMTU Ward's very own clippers. That was a very painful experience as the clippers would frequently get jammed. Since it is important to learn from your mistakes, this year I simply pulled out as much of my hair as would come out and then I used my shaver to get the rest. The result.....a nice smooth shiny white head minus the pain. Mum dropped off a couple of videos for Sandy and I to watch. We started watching one of them at about 1:30pm and by the time Sandy left at about 7:30pm we had only seen 3/4 of the first video. We had interruptions from the nurses, nurses (Loretta, Cate, and Mel) bearing a cake, visits by Liz, mum and dad, Ron, and Sandy's Brother and his girlfriend (Nick and Del, Del being short for Delvene and not Delicatessen). My throat feels like it is getting a little worse today. Swallowing stuff is becoming a bit of a chore. I can still get the required tablets down, but boy is it non-trouble free. Generally had a good day with my Crudness Factor at about 4.5.
Blood Counts:
White Cell Count
<0.1
Neutrophils
n/a
Haemoglobin
91
Platelets
28
Bone Marrow Transplant Day +9
Friday
10/10/2003
Week 3
I was told that the record for engraftment (using cells collected from the bone marrow) is 9 days. Today is the 9th day and I have not been told that I have engrafted....bummer. I would have been satisfied with equalling the record. Today it became more evident that the various anti-biotics being used have not been able to effectively control whatever infection I have and one's crudness can literally change overnight. Depending on the effectiveness of the Panadol, my temperature would vary between 37.5 and 38.5 degs. Today was generally a fairly crud day. The average Crudness Factor today was probably about 7 (up a lot from yesterday), and I spent most of the day sleeping. Not an exciting day for Sandy. There was a small window of slightly reduced crudness where I was able to get up and struggle through a shower though. Tonight I start on a new anti-fungal type drug to see if that helps my situation. My mouth appears better today though my throat seems a little worse. I could only swallow in very tiny amounts. It appears that there may be an irritating small lump on my throat not helping my cause.
Blood Counts:
White Cell Count
0.1
Neutrophils
n/a
Haemoglobin
92
Platelets
21
Bone Marrow Transplant Day +10
Saturday
11/10/2003
Week 3

Today was another very crud day putting me on the brink of my very first Crudness Hat-Trick. I struggled the whole day to get my temperature down below 38 degs, and I believe I failed dismally. Low platelets meant I was given a transfusion today. Again spent a large proportion of my day in bed zonked out. I somehow managed a shower later in the day and was lucky not to faint and knock myself out. Mum and dad, and Sandy's parents dropped by to see me all snuggled up in bed. Today's average Crudness Factor was probably around 7 to 7.5. My throat is still giving me some curry when I swallow, but I think it may be on the improve since I was able to swallow twice consecutively without choking.

Blood Counts:
White Cell Count
0.1
Neutrophils
n/a
Haemoglobin
93
Platelets
13
Bone Marrow Transplant Day +11
Sunday
12/10/2003
Week 3
Woke up at about 7:30am with slight chillls. Called for an additional blanket and by 10:30am my Crudness Factor had reached an all new high of 8 (completing the 3 day Crudness Hat-Trick). Coincidently, I had hit a temperature of 39.9 degs. The doctors have been trying various anti-biotics to try to control my fever, and today concluded that the infection may be in my CVC line and that a new line was in order. Platelets were given, I had the new line put in, and then spent the rest of the day sleeping. I have this weird red rash, possibly a reaction to one of the anti-biotics (which they have now changed). Sandy came in at about 1:30pm to see me totally zonked out. Mum and dad, and Richard and Jen also stopped by to see me in the same zonked state. The Panadol I took at 4pm started kicking in dropping my Crudness Factor to about 6 and I was able to get up and have a shower at about 5:30pm. Geez that was hard work, so I promptly grovelled back into bed straight after. My mouth and throat are definitely better today, and I am having less trouble swallowing. However, I still have very little appetite and am still getting most of my nutrition from liquid supplements. Managed a whole Powerade today. Had another spell of the chills in the evening seeing my temperature soar to 39.8 degs. All in all, it would have been hard to find a better way to complete the 3 day Crudness Hat-Trick.
Blood Counts:
White Cell Count
0.1
Neutrophils
n/a
Haemoglobin
90
Platelets
30
Bone Marrow Transplant Day +12
Monday
13/10/2003
Week 3
Sandy stayed the night and found out that there is not much quality sleep to be had in hospital. Woke up feeling crap again. Well, actually I didn't really get up. Spent most of the day grovelling in bed. I think at one point in the morning, my temperature was around 38.5 degs. My low haemoglobin had a bit to do with my crapness. I was given a blood transfusion and that helped a little. I was feeling short of breath and the nurses gave me a Ventolin nebuliser which helped heaps. The doctors did their daily round and brought round a few medical students. It's not so great to be on exhibit when one is not looking one's Christmas best. Oh yeah, and there was a scare with my new CVC line. The radiology department were unable to tell from the chest x-ray if the line was poking into my aorta (apparently that would be poo). Luckily some quick tests revealed that all was fine. Mum and dad dropped by, and Sandy's dad came to pick up Sandy at about 7pm. I was feeling a bit better by early evening and my Crudness Factor which was as high as 8 in the morning was about 6.5 when Sandy left. I even stayed up to watch Alias. Swallowing stuff is definitely on the improve, I was able to put down a bottle of V8!!. Hopefully I can break my crudness trend tomorrow.
Blood Counts:
White Cell Count
0.1
Neutrophils
0.09
Haemoglobin
73
Platelets
36
Bone Marrow Transplant Day +13
Tuesday
14/10/2003
Week 3
Mornings are definitely hard at the moment. However, this morning's Crudness Factor was certainly lower than the last 4 days but was still around the 5.5 mark. Hit a 38 deg temperature in the morning and so spent the remainder of the morning resting. Mum dropped by and brought in Matrix Reloaded and Bulletproof Monk for us to watch. Was feeling a bit better by early afternoon so Sandy and I watched Matrix Reloaded and got about halfway through Bulletproof Monk. Our website sponsors Muz and Lex dropped in for a visit. My Crudness Factor went up slightly to about 6 (in response to another 38 deg spike in my temperature) in the evening and it took me till 9pm before I was able to get myself in for a shower. You have to laugh when are getting this type of treatment. Over the last week the doctors have been hydrating me with plenty of IV fluids and I have gotten to the stage where I am retaining this fluid and looking a little puffy. In addition, the extra fluid sometimes leaves me a bit short of breath. So in response to this, I was given some diuretics to get rid of some of this fluid. Oh yeah, to add to the excitement, the doctors wanted another 24 hour urine collection. The last few times I was only able to fill up about half of the bottle volume (which is probably about 5 to 6 Litres in total capacity). This time, the bottle was more than half full by the 12 hour mark!! One final story for the day, in my attempt to eat more today, I ate some instant rice noodles. However, the MSG gave me a bit of curry and triggered a bit of Asthma and needed a Ventolin Nebuliser. Therefore, no more noodles.
Blood Counts:
White Cell Count
0.1
Neutrophils
0.07
Haemoglobin
87
Platelets
23
Bone Marrow Transplant Day +14
Wednesday
15/10/2003
Week 3
Had another 38 deg spike in temperature this morning. A dose of Panadol helped bring the temperature down and by around 10:30am was not feeling too crud so I watched the end of Bulletproof Monk that I started yesterday. Sandy came in at about lunchtime. My mouth is starting to feel a lot better and I have been thinking of eating more. Today for lunch I had a fruit platter. This is highly recommended as it gives a slight cooling effect which is very comforting for a sore mouth. Felt a bit tired in the afternoon so I had a snooze whilst Sandy watched movies. In the end I was unable to completely fill the 24 hour urine collection bottle. However, I gave it a red hot go. Sandy's parents dropped by in the evening for a visit and to take Sandy home. Ironically, I did not feel that tired and stayed up till about 12pm watching the Rugby World Cup highlights. Today's average Crudness Factor was about 5.5 to 6. I also had a platelet transfusion today.
Blood Counts:
White Cell Count
0.1
Neutrophils
n/a
Haemoglobin
87
Platelets
17

Bone Marrow Transplant Day +15
Thursday
16/10/2003
Week 4
Check it out!! The white cell count has made a bit of a jump today from 0.1 to 0.4. This is excellent and an early sign of engraftment. Keep an eye on the blood counts over the next couple of days as this will be an exciting time. As usual did not get much sleep and was feeling a bit out of it this morning. My temperature was up at 38 degs which didn't help. Had some Panadol and woke up again at 7:30am for some actual breakfast. I was able to put down some Rice Bubbles (I was fairly happy with that). After breakfast, tried to get some more sleep. I essentially spent the rest of the day resting. Sandy came in and watched some movies while I fell in and out of sleep. Had a visit from Katrina, and of course mum and dad. I am certainly starting to eat more now. I was able to have the fruit platter for lunch and dinner today. I still have this angry rash all over my body that the doctors think is being caused by a drug reaction. They have stopped what they think is the offending anti-biotic (we will see in the next few days). After a week away, the "main man" Dr Cannell was back. Crudness Factor was around 6 in the morning and dropped to about 5 in the evening.
Blood Counts:
White Cell Count
0.4
Neutrophils
n/a
Haemoglobin
87
Platelets
24
Bone Marrow Transplant Day +16
Friday
17/10/2003
Week 4
Another day, another small movement in the white cell count. More good upward action. Still not getting much quality sleep at night. Spikes in my temperature (up to about 38 degs) makes it hard to settle down during the night. The rash that I still have all over my body does not help my situation much. The upside of the rash is that if it doesn't go away I will already have a scary costume for Halloween. As usual felt very tired and spent most of the day grovelling around in bed with a Crudness Factor of around 6. Sandy, mum and dad, and James and Ming dropped in for a visit. I was given a platelet transfusion in the afternoon. Felt a bit better in the evening. Still not much appetite but I managed to eat something at each of the main meals.
Blood Counts:
White Cell Count
0.7
Neutrophils
0.62
Haemoglobin
83
Platelets
16
Bone Marrow Transplant Day +17
Saturday
18/10/2003
Week 4
Look at the white cell count fly. That is a super jump. Unfortunately, that is the only exciting news to really report today. My rash is still not improving and is in fact starting to get a bit annoying. My temperature generally hovered around the 38 deg mark overnight, so again not much quality sleep. Like the last week, was very washed out and tired most of the morning and afternoon (Crudness Factor was around 6). Was given a blood transfusion and that seemed to help my tiredness slightly. Sandy and her mum got in around 3pm and mum and dad visited a bit after lunch. Felt slightly better in the evening and managed to crawl into the shower. My appetite is still crud but managed some food throughout the day. The fruit platter has definitely become the lunchtime favourite.
Blood Counts:
White Cell Count
1.6
Neutrophils
1.26
Haemoglobin
81
Platelets
33
Bone Marrow Transplant Day +18
Sunday
19/10/2003
Week 4
More white cell action today. The white cell count is now high enough that the doctors have stopped all of the IV anti-biotics I was on. This is good because they think that the angry rash may be caused by a drug reaction. The doctors are hopeful that stopping these drugs may make the rash go away. However, we will see. Had a Crudness Factor of around 6 thoughout the day, and as usual this dropped to around 5 by the evening. Sandy left at about 9pm and I was awake enough to watch some TV before bed. My appetite is still not there, but it may be related to the fact that things taste wierd at the moment. I think the chemotherapy has done something to my taste buds.
Blood Counts:
White Cell Count
2.2
Neutrophils
1.74
Haemoglobin
104
Platelets
28
Bone Marrow Transplant Day +19
Monday
20/10/2003
Week 4
Another strong movement in the white cells today. Engraftment has definitely been achieved. Wouldn't be a standard night if I didn't spike a 38 deg temperature. Surprisingly, I did not feel that crap in the morning. I was even able to have a shower in the morning though that seemed to really suck the energy out of me. I would say that my Crudness Factor throughout the day was around 5. However, I did still feel reasonably washed out and tired, and had a lot of small snoozes throughout the day. Sandy came in at about 10:30am. Mum and dad dropped by for a visit and so did Katrina. Surprised myself today. I had baked beans for breakfast, a fruit platter for lunch and even put down a toasted chicken sandwich for dinner. Each meal was hard work though (but necessary to help get my energy level up).
Blood Counts:
White Cell Count
2.9
Neutrophils
n/a
Haemoglobin
107
Platelets
22
Bone Marrow Transplant Day +20
Tuesday
21/10/2003
Week 4

There is no stopping those white cells now! They are absolutely firing. Had the usual crappy night of sleep. But woke with a Crudness Factor of only 5.5. I was forced into the shower by the nurses who took the opportunity to make-up my bed. However, I took my revenge and left them a stool sample!! My left arm looked a bit puffy compared to the right and the doctors fired up an ultrasound to see if there were any blood clots. Results showed there were no clots and the cause of the puffiness remains a mystery. The big morning of activity left me pretty tired and I spent the afternoon napping. The doctors wanted to find out more about the rash that won't go away so they did a skin biopsy in the afternoon. They gave me some platelets and then cored a small section of skin from just above my bum. As usual, Sandy, mum and dad dropped by to see how I was doing. Oh yeah, don't want to forget that the unfunny doctors have changed my Cyclosporin back to 2 smelly 2.6cm tablets twice a day...yeeech!

Blood Counts:
White Cell Count
5.5
Neutrophils
4.29
Haemoglobin
104
Platelets
21
Bone Marrow Transplant Day +21
Wednesday
22/10/2003
Week 4
Had the usual bad night of sleep so had the normal day of grovelling around in bed with a Crudness Factor of 6. No results from the skin biopsy, but the rash is definitely changing. It is more like an all over reddish-brown tan, except in my lower legs were it still appears a bit spotty. Sandy and dad visited, as did Lex and Muz. Took me till about 8pm, when my Crudness Factor dropped to about 5.5, to psyche myself up for a shower. The good news of the day is that because my white cell count is so high now, I don't have to have any more GCSF injections (for the moment)....yay!! However, expect to see the white cell counts fall over the next few days as a result. My appetite is still crud, but I am forcing myself to have at least 3 meals a day, even though they are very small.
Blood Counts:
White Cell Count
9.8
Neutrophils
7.94
Haemoglobin
100
Platelets
37

Bone Marrow Transplant Day +22
Thursday
23/10/2003
Week 5
Just when I thought the tablets could not get any more challenging I have been put on these magnesium tablets. These are about 2.3cm in length, and at their widest point are about 1cm. Unlike the Cyclosporin tablets, these magnesium tablets are square edged but in my opinion are probably slightly easier to swallow. Ironically, I am low in magnesium because the Cyclosporin chews up magnesium in the body. And guess what, the bigger the tablets, the more you have to have (2 tablets twice a day!!). Dr Cannell came back from his conference in New Zealand today. He is quite confident that my rash is a result of a drug reaction and not from GVHD, and thinks that it is improving. Hopefully the results from the skin biopsy will be available tomorrow. Had the usual crap morning and afternoon and slept most of the day. Sandy, mum and dad came in to see me totally zonked out. Still not much appetite, but again had 3 small meals. Crudness Factor today was probably around 6.
Blood Counts:
White Cell Count
7.4
Neutrophils
5.62
Haemoglobin
98
Platelets
29
Bone Marrow Transplant Day +23
Friday
24/10/2003
Week 5
Had the usual crud morning and slept through most of it. However, the good news is that I get to go out on weekend leave...yay!! I am hoping that this will mean I might get a better night's sleep and hopefully this will help to reduce my Crudness Factor. With my blood counts looking stable my CVC line was pulled out. The downside of this is that I will be getting blood tests from now on the old fashioned way...ouch!! Still no skin biopsy results. Took a while for my weekend drugs to be sent up from the Pharmacy and we left the hospital at about 5:30pm. Took it safe and got a wheelchair down to the car where Sandy and I were picked up by mum and dad. Managed a small amount of Thai food for dinner. Ahhh it's good to be home.
Blood Counts:
White Cell Count
5.2
Neutrophils
3.28
Haemoglobin
101
Platelets
31
Bone Marrow Transplant Day +24
Saturday
25/10/2003
Week 5
Ironically, I probably had a worse night's sleep than I did in hospital. I think the rash is making it hard for me to regulate my body temperature and throughout the night I was unsure how to achieve a comfortable temperature. Despite the lack of sleep, I woke up feeling pretty good (being home is a definite plus). I think my Crudness Factor was probably about 4.5 all day. Had breakfast on the deck in the fresh air. Was awake the whole day and was more active than I have been for some weeks now. I can't stay standing for too long, and my ankles are a bit puffy. The challenge at home is making sure you take all the required 30 tablets at the right times during the day. Mum and dad dropped by with some lunch and Sandy's parents and her uncle (Stephen) and cousin (Dylan) came by also.
Blood Counts:
White Cell Count
-
Neutrophils
-
Haemoglobin
-
Platelets
-
Bone Marrow Transplant Day +25
Sunday
26/10/2003
Week 5
Didn't sleep well again. However, this time it was mostly due to our noisy neighbours having people round till quite early in the morning. Woke up not feeling as well as yesterday. Sandy made pancakes with bananas, strawberries, lemon juice, and sugar....delicious. However, with my crappy appetite I only managed to eat 1 and a half pancakes. Another of Sandy's uncles dropped by (Peter), and so did Sandy's mum and dad. I slept most of the afternoon and felt better by the evening. Managed a party pie and party sausage roll for dinner (not healthy, but the important thing to remember is I kept it down). Crudness factor started out at 5.5 and improved to about 4.5 in the evening.
Blood Counts:
White Cell Count
-
Neutrophils
-
Haemoglobin
-
Platelets
-
Bone Marrow Transplant Day +26
Monday
27/10/2003
Week 5
Well, weekend leave is over and it's time to go back to hospital. Finally grovelled out of bed at about 9:30am. Sandy and I got dropped off at the hospital a bit after 10am by mum. The nurses did the standard observations and we had to wait till about 12pm for the resident doctor to come and take my blood. Three and a half more hours of waiting/napping/thumb twiddling and the consultant came to see me. Things were looking good and I am being discharged today....yay!!! My white cell count had fallen a bit low so I was given a shot of GCSF. After the usual 1.5 hour wait for the discharge drugs to arrive, and a quiet moment with a VRE swab I was heading home!!!! This time however, I left the hospital under my own steam (big improvement!). After being dropped home by mum, I found myself safely slotted back on the couch. With my discharge from hospital, I am switching to weekly updates to coincide with my Thursday outpatient clinic visits unless there are any interesting developments to report during the week. Finally, I must send out a big thank you to all the nurses and staff on the BMTU ward who were all so great and made my stay in hospital much more comfortable. You guys rock!!
Blood Counts:
White Cell Count
2.8
Neutrophils
1.03
Haemoglobin
100
Platelets
38

Bone Marrow Transplant Day +29
Thursday
30/10/2003
Week 6
Time certainly flies by. I can't believe that it's already my first outpatient clinic appointment since my discharge on Monday. As usual, it was difficult to get up and get ready. Took the usual morning load of tablets before Sandy and I were dropped off at the hospital by Sandy's dad. Headed straight to the blood collection centre where I was drained of about 8 vials of blood. Did I mention that I am not a big fan of needles? After the blood test headed up to the outpatient's clinic where they were very busy and backed up to buggery. It is sitting in the waiting area of the outpatient clinic where I am most paranoid. I am immune suppressed and yet I have to hang out with all these sick people (just my 2 cents worth). My appointment was for 11am and we didn't get to see the consultant till 12:15pm. The general feeling was that things were going well. Marrow function appears to be improving, however, my kidney function was down and was advised to drink more. To help with the kidney function, I was to stop my Valaciclovir tablets till Monday (more excellent news as I usually have 16 of these a day). My Cyclosporin levels were a bit high and the dosage was reduced from 200mg to 150mg. In metric terms that is a decrease of 2.4cm in daily tablet length....yay!! There were no conclusive results from my skin biopsy, and it seems that this all over tan that I have is due to the darkening of my skin pigment by the Busulphan and should fade in a month or two. Was given my prescription of tablets for the coming month (see photo). If anyone was wondering, there are 766 tablets in total. Sandy's mum dropped us home and being totally exhausted from the day's activities I headed straight to the comfort of the couch. My appetite is still poor, and most foods are still tasting quite wrong. Vegetables and fruits are quite palatable and so I am sticking mostly to these at the moment. Crudness Factor is generally around 4 to 4.5 despite being constantly tired.
Blood Counts:
White Cell Count
6.9
Neutrophils
4.41
Haemoglobin
105
Platelets
79

Bone Marrow Transplant Day +36
Thursday
6/11/2003
Week 7
105 Tablets later and it is time for clinic appointment number 2. Today's appointment had the extra challenge of getting out of bed at 8:30am. Sandy and I were dropped off at the hospital by her mum, had my bloods taken, and we were in the outpatient clinic waiting area by 9:30am for my "9:45am" appointment. After the standard hour or so wait I was called up. Not much to report on this time around. Clinically everything is "on-track". Liver function is good, and the new bone marrow appears to be functioning very well (with a good rise in the platelet count over the last week). Another good sign that the marrow is functioning well is that the other day I found myself asking Sandy "if my bum looked big in my new pyjamas!!". My kidney function however, was still down. The outcome of this is that I have to reduce the Valaciclovir tablets from 16 to 1 a day for a whole week...yippee!! 105 tablets less for the week!! My Cyclosporin levels were also a bit high so I have been cut back from 150mg to 100mg twice a day. Another excellent outcome. I have been starting to feel a little bit nauseous over the last day or so (which apparently is quite common), and guess what.......I was prescribed some more tablets to combat this. Also been getting some pins and needles type of sensation in my hands and feet. Apparently my hands appear slightly redder than from the last clinic visit and this could be signs of some GVHD. My weight continues to drop as I continue to have little appetite and damaged taste buds. I have gone from a hefty 81kg (at the start of treatment) to a much trimmer 73kg today.
Blood Counts:
White Cell Count
6.1
Neutrophils
2.41
Haemoglobin
95
Platelets
197

Bone Marrow Transplant Day +43
Thursday
13/11/2003
Week 8
Had a pretty good week. Am making small steps towards recovery. I am certainly not feeling as tired as I did 2 weeks ago. At least I can stand up for for more than 5 minutes without toppling over. I am starting to regain some appetite and have been able to eat some reasonably sized meals over past week. However, most foods still taste weird and generally not satisfying like food should be. I am still sporting my "Indian" tan, though I think it may be fading in some areas. Also, I still can't seem to sweat which was a bit a problem earlier in the week when the temperature hit 40 degs (on the brighter side I don't need any anti-perspirant). Also this week, my cousin Cynthia came all the way over from Sydney to visit me (although she made up some excuse about really coming to Perth to attend some important conference), and Colin (a mate from Uni who went MIA in the UK for the last 5 years) also dropped by. Anyway, today's clinic appointment was very similar to the previous ones (with the exception that I saw Dr Crawford today). Kidney function has improved, and liver function was normal. I had some thrush on my tonsils, and have been developing some "green" mucous, so I was given appropriate medications to deal with these issues. Valaciclovir tablets were increased to 2 tablets a day, and I was given the go ahead to start on these Septrin Forte tablets (a medication used to prevent Pneumocystis, an opportunistic infection that can occur in immune compromised patients, and apparently something you don't want). The low point of the appointment was getting sent back down to the blood collection centre for an additional blood test (not good value). This week's Crudness Factor was generally around 3.5 to 4.
Blood Counts:
White Cell Count
6.3
Neutrophils
4.35
Haemoglobin
92
Platelets
260

Bone Marrow Transplant Day +50
Thursday
20/11/2003
Week 9
Turns out that I left out some important news from last weeks clinic visit. For my particular type of Leukaemia, it is possible to track from the blood tests the level of residual disease, at a DNA level, using a procedure called PCR (Polymerase Chain Reaction). However, this test is not a quantitative test and essentially only yields a positive (detectable level of residual disease) or negative (non-detectable level of residual disease) result. For the first time since I began treatment (about 1.5 years ago), I was PCR negative!!!!! Nothing to really report this week. Had my weekly appointment with Dr Cannell. Everything is going well. One of the liver function tests was a bit high and may be from GVHD (which apparently is good, the GVHD that is). Kidney function has improved slightly. Another good sign is that my haemoglobin has risen slightly over the week saving me from a blood transfusion (yay!!). Taste is improving but my mouth remains quite dry. Am still not able to sweat but at least I have a nice chemotherapy tan. Got away from the clinic appointment without any increase in medications. And finally, the female marrow must really be kicking in now as I am finding it harder and harder to read maps (ooooh, I can feel the backlash already).
Blood Counts:
White Cell Count
4.2
Neutrophils
2.74
Haemoglobin
99
Platelets
245

Bone Marrow Transplant Day +57
Thursday
27/11/2003
Week 10
Another uneventful but relaxing week. The weekly clinic went well again. Kidney and liver function tests were mostly OK. Prednisolone (some sort of steroid, and not an anabolic one) was reduced from 25mg per day to alternating between 25mg one day and 12.5mg the next. The idea is to slowly get me off these steroids (turns out that going cold turkey can be hazardous to your health). Dr Cannell suggested that I should start doing light exercise and that it would be all right to for me to go back to the gym. However, I would have to be careful and should avoid being sneezed/coughed on (which is actually good advice for everyone). However, I am not meant to be too vigorous and definitely should not exert myself. But the doctor did not think that would be a problem since I am unlikely to have much stamina anyway. It was suggested that I should start with walking around the block for a few weeks to begin with. So starting tomorrow, I am putting on my walking shoes (which, conveniently, just happen to be my normal shoes). On other matters, my appetite is starting to come around. My mouth is still staying quite dry. I am told that a lot of patients end up with much dryer mouths after the bone marrow transplant procedure. This is a problem, especially when eating tasty salty treats such as chips and popcorn. Ironically, I have this excellent all over chemotherapy induced tan for summer but I am not allowed to go into the sun.
Blood Counts:
White Cell Count
3.6
Neutrophils
n/a
Haemoglobin
99
Platelets
284

Bone Marrow Transplant Day +64

Thursday
4/12/2003
Week 11
This week was action packed (from an exercise point of view). Was able to manage a walk around the block every day. Started slowly last Friday with just one block. However, by the end of the week, I was up to a massive 5 blocks. On some days, I even managed 2 walks!! As usual, got the 2 thumbs up from the clinic today. Dr Cannell has abandoned me for the next 3 weeks whilst he attends a conference in the USA followed by a couple of weeks of holiday. All blood tests were steady and there were no change to any medications. I think the sweat glands are starting to function again. I could swear that there was a bit of moisture on my forehead after a couple of my walks (or perhaps it was dew??). On another note, we scored a home multi-gym from our excellent lawn-mowing man (Terry Butler). I am told that Sandy's mum's power of persuasion had something to do with it. The multi-gym will hopefully be delivered today or tomorrow. Another thing to mention is that Sandy spotted some very fine hair growing on my head. I may in fact have to shave it off to help thicken it up when it eventually grows back.
Blood Counts:
White Cell Count
5.4
Neutrophils
4.73
Haemoglobin
106
Platelets
227

Bone Marrow Transplant Day +71
Thursday
11/12/2003
Week 12
Well, weights are quite heavy. Spent the whole week working out on the multi-gym. Can't really do too much at the moment. Since I used to go to the gym quite a lot, it is hard on the ego to take such a giant step backwards. On the bright side though, the workouts are exceptionally short (about 10 mins long, I think). I am sure that it all helps in some way. Today's clinic appointment was with Dr Crawford again. All tests were good, and 2 thumbs up were given. On the medication front, Prednisolone was decreased to 10 mg per day, and magnesium was dropped from 4 tablets a day to 2 tablets a day (thereby also decreasing my probability of choking to death by an estimated 30%). We subscribed to some extra Foxtel (Cable) TV Channels over the last month to try to keep me entertained. I can't explain it but for some peculiar reason I am strangely drawn to Channel "W" (the for women channel).............
Blood Counts:
White Cell Count
5.4
Neutrophils
4.29
Haemoglobin
108
Platelets
220

Bone Marrow Transplant Day +78
Thursday
18/12/2003
Week 13
Was going well with the 10 min workouts and the walking around the block until Tuesday when I inadvertently sprained my ankle. It would be great to be able to say that I sprained my ankle chasing a burglar or doing something heroic but unfortunately it was largely due to me being a big klutz. On a happier note, Pat and Riky, friends who have been living in Canada for the past year are back for Christmas. Can't wait to catch up with them. Yet another 2 thumbs up at my weekly appointment. All the blood, kidney function and liver function tests were stable. At present, my dosage of Valaciclovir does not provide sufficient cover for CMV (Cytomegalovirus). Preferring to be on the safe side, Dr Crawford upped the Valaciclovir from 2 tablets a day to 4 tablets a day (far less than the 16 tablets a day which I was originally on). Prednisolone was dropped to 7.5mg per day. My mouth is still dry and can get quite uncomfortable during hot days. However, my appetite is getting much better which is excellent with Christmas coming up. Another good thing that I have noticed about the chemo tan is........no tan lines!!!!
Blood Counts:
White Cell Count
3.4
Neutrophils
2.37
Haemoglobin
100
Platelets
176
Bone Marrow Transplant Day +83
Tuesday
23/12/2003
Week 13
No clinic appointment this week. However, still had to go in for my weekly blood test though. Had lunch today at Lamonts (in East Perth) with the people from work. Rang up Dr Crawford in the afternoon for the results and to see if there needed to be any change in my medication. All the blood tests were fine. Medications to remain the same except that the Prednisolone was to be reduced to 5mg per day on Christmas day. The Christmas festivities have begun. On Sunday we went to a gathering of Sandy's relatives at Sandy's parents' place. Last night we had "Christmas" dinner with my parents and my brother and his family. Tonight we are having "Christmas" dinner over at Richard and Jen's place. Tomorrow we are heading down to Sandy's parents' farm (which is just north of Margaret River) for a nice relaxing Christmas. The change in scenery and couches will be worth it. Unfortunately we have to be back on the 30th of December for my clinic appointment on the 31st.
Blood Counts:
White Cell Count
3.1
Neutrophils
2.3
Haemoglobin
105
Platelets
211