Hello at last. It's been just over three weeks since the last post and life has been pretty busy with everything leading up to Christmas.
To avoid boring you all with the details, I'll get straight into things. I'm on leave from 24/12/08 and back on 5/1/09. Things are pretty busy at the moment which is good in many ways.
We are currently staying at a friend's house in Manly Vale while they visit Tasmania. We are having a great time and very much enjoying the beach lifestyle (except for Ali who hates sand, wind, water and sun - she gets to enjoy some peace while I take the kids to the beach!).
For New Year's Eve, at this stage it looks like it will be a sensible time and we will be back home in Canberra. We are heading back tomorrow (30/12) so there will be time to settle in and rethink whether to be sensible or not.
As far as news on the health front goes, we are hoping to get Ali in to see a specialist on the week starting 19/1/09 to talk further about the SIR-spheres and determine when we can go ahead with a treatment for Alison. She is continuing on her hormone treatments and is generally feeling pretty normal.
Kids are enjoying the holidays a lot. Annelise has forgotten which way around she is meant to be writing the letter 'k'. Despite this, she is looking forward to school next year with her new teacher.
Harrison is not as keen to get back to school but is still excited about having a male teacher for when he starts at Grammar next year. Then again, he remembers which way the 'k' should go as well.
Harry is not so bad and is doing lots of reading.
Monday, December 29, 2008
Sunday, December 7, 2008
Update on blog statistics
A while ago I wrote a short post when we reached one thousand visits. Well, it's time for a quick update!
We are now at over 4,000 visits since we started with 550 unique visitors from 16 countries having viewed the blog. All up that accounts for over 3 days' of continuous viewing
I truly hope that you find this a useful way to keep up to date and to stay in touch with what is going on in our lives.
As a quick reminder, if you respond and leave a message via the blog, we don't have any direct way to respond to you personally. While Ali is very grateful (and humbled) by all the response and interest through this website, it is hard for us to acknowledge everyone.
If it is convenient for you to send a message, please feel welcome to send them through to pike.at.work@gmail.com. I will get these messages directly and be able to respond to you individually (unless you are being sneaky and hiding your email) or you can email Ali directly at aapike@tpg.com.au.
We are now at over 4,000 visits since we started with 550 unique visitors from 16 countries having viewed the blog. All up that accounts for over 3 days' of continuous viewing
I truly hope that you find this a useful way to keep up to date and to stay in touch with what is going on in our lives.
As a quick reminder, if you respond and leave a message via the blog, we don't have any direct way to respond to you personally. While Ali is very grateful (and humbled) by all the response and interest through this website, it is hard for us to acknowledge everyone.
If it is convenient for you to send a message, please feel welcome to send them through to pike.at.work@gmail.com. I will get these messages directly and be able to respond to you individually (unless you are being sneaky and hiding your email) or you can email Ali directly at aapike@tpg.com.au.
Next couple of weeks
OK, from the last post you may have gathered that we were at a bit of a junction with regard to choice of treatments. Matters have progressed somewhat since then but we are guessing our way through many things and still trying to fully grasp what is ahead of us.
That said, we feel pretty confident that with the advice of our doctors, we are on the best possible path. From here, we have decided to progress with just the hormone treatment for the time being.
This means that Ali gets a 16 gauge needle in her stomach every couple of weeks for the hormones (plus oral hormones which really, are not much of a problem - like hey! what's 23 pills instead of 22 each day). For those who understand how needle measurements work, no further explanation is required. For those who don't know a 16 gauge from a 6 gauge, let's just say that Ali needs 2 or 3 local anaesthetics before they get to the 'real deal'. OUCH!! (On top of this, she is continues to get her bone drugs so she still has to put up with the cannula with each treatment.)
On the bright side, there is no more sickness from the chemo and this Christmas should be 'normal'. The chemo that was scheduled for Christmas Eve is no more and we are looking forward to a happy and exciting day.
As far as other matters go, there's only two weeks of school left! Who could believe it? Kids are getting just that little bit older (as we all are!) and immeasurably smarter and more mature. Surely our parents didn't have to put up with kids growing up so quickly?
The Christmas nut in Alison has come out and we've had our Christmas tree up and decorated since well before the start of December (not quite flowing on from Father's Day like the shopping centres but not too far off). Most of the Christmas presents are settled and we are hopeful of stretching the spirit and magic of the season for at least this year, although with an 8 year old, it is seemingly harder and harder as each year rolls on by.
As a short aside, Alison prepared a fantastic meal tonight. For those who say that scientists have absolutely no imagination or creativity (humble apologies to Alison for my views on this), Ali managed to whip up a fantastic cous cous salad accompanied by a breast of chicken marinated in Portuguese spices. Absolutely delicious!
That said, we feel pretty confident that with the advice of our doctors, we are on the best possible path. From here, we have decided to progress with just the hormone treatment for the time being.
This means that Ali gets a 16 gauge needle in her stomach every couple of weeks for the hormones (plus oral hormones which really, are not much of a problem - like hey! what's 23 pills instead of 22 each day). For those who understand how needle measurements work, no further explanation is required. For those who don't know a 16 gauge from a 6 gauge, let's just say that Ali needs 2 or 3 local anaesthetics before they get to the 'real deal'. OUCH!! (On top of this, she is continues to get her bone drugs so she still has to put up with the cannula with each treatment.)
On the bright side, there is no more sickness from the chemo and this Christmas should be 'normal'. The chemo that was scheduled for Christmas Eve is no more and we are looking forward to a happy and exciting day.
As far as other matters go, there's only two weeks of school left! Who could believe it? Kids are getting just that little bit older (as we all are!) and immeasurably smarter and more mature. Surely our parents didn't have to put up with kids growing up so quickly?
The Christmas nut in Alison has come out and we've had our Christmas tree up and decorated since well before the start of December (not quite flowing on from Father's Day like the shopping centres but not too far off). Most of the Christmas presents are settled and we are hopeful of stretching the spirit and magic of the season for at least this year, although with an 8 year old, it is seemingly harder and harder as each year rolls on by.
As a short aside, Alison prepared a fantastic meal tonight. For those who say that scientists have absolutely no imagination or creativity (humble apologies to Alison for my views on this), Ali managed to whip up a fantastic cous cous salad accompanied by a breast of chicken marinated in Portuguese spices. Absolutely delicious!
Monday, December 1, 2008
Chemo cancelled
We saw the oncologist today. Unfortunately, with the results from last week's scans showing that the tumour in Alison's liver was still growing, it seems that the chemotherapy was not doing its job. And if it's not working, then there is no point in putting Alison's body all through the hassle of side-effects that come with chemo. Thus, we are stopping the treatment.
Next options discussed with the doctor painted three potential pathways.
1) Try an alternate course of chemotherapy and hope that works to reduce the size of the tumour. Thoughts are that given the failure of the first two regimes, probability of this approach being effective are reduced.
2) Start on hormone treatment. Previous tests have indicated that Ali may have a positive response to hormone treatment. It was always intended that she would have hormones at some point, it was just that we were hoping to shrink the tumour first with some chemo and then go with them. The intent of the hormones is to hold the cancer at a stable level for as long as possible.
3) Undergo treatment with SIR-spheres. Essentially an injected radiotherapy treatment where small particles of hair are combined with radioactive material and injected in the blood vessels of the liver (see http://www.sir.net.au/SIR_pi.html for more info). This is a relatively new treatment and it's good to see that it's an Australian innovation. It's not available everywhere so we would need to swap away from our regular doctors for treatment.
Options 2) and 3) are not mutually exclusive and can be undertaken together. At this stage, Ali has already started on the hormones and we are considering whether to push ahead with option 3) as well. The doctors need to confer amongst each other to get their heads straight about what is the best approach and we also need to consider what we think is best. Hopefully, within a week or two we'll know which way to go.
To finish on some good points, there was no evidence of new growths and the doc said that it wasn't the fastest growing cancer she had seen. Ali is generally pretty healthy (cancer notwithstanding) and is getting to feel a bit better now that the last chemo treatment was nearly three weeks ago.
Next options discussed with the doctor painted three potential pathways.
1) Try an alternate course of chemotherapy and hope that works to reduce the size of the tumour. Thoughts are that given the failure of the first two regimes, probability of this approach being effective are reduced.
2) Start on hormone treatment. Previous tests have indicated that Ali may have a positive response to hormone treatment. It was always intended that she would have hormones at some point, it was just that we were hoping to shrink the tumour first with some chemo and then go with them. The intent of the hormones is to hold the cancer at a stable level for as long as possible.
3) Undergo treatment with SIR-spheres. Essentially an injected radiotherapy treatment where small particles of hair are combined with radioactive material and injected in the blood vessels of the liver (see http://www.sir.net.au/SIR_pi.html for more info). This is a relatively new treatment and it's good to see that it's an Australian innovation. It's not available everywhere so we would need to swap away from our regular doctors for treatment.
Options 2) and 3) are not mutually exclusive and can be undertaken together. At this stage, Ali has already started on the hormones and we are considering whether to push ahead with option 3) as well. The doctors need to confer amongst each other to get their heads straight about what is the best approach and we also need to consider what we think is best. Hopefully, within a week or two we'll know which way to go.
To finish on some good points, there was no evidence of new growths and the doc said that it wasn't the fastest growing cancer she had seen. Ali is generally pretty healthy (cancer notwithstanding) and is getting to feel a bit better now that the last chemo treatment was nearly three weeks ago.
Friday, November 28, 2008
Update on CT scan
Hi, it's been a bit busy lately so I've been a little slack in keeping up with the postings.
Ali had a CT scan done last Wednesday. We haven't spoken to the doctor about the results yet so we're not too sure what it all really means.
From what we can tell, the tumour in her liver has grown (43mm to 50mm) but there are no new tumours or lesions visible.
With chemo time racing around again next week, we should have the chance to find out more then.
Ali had a CT scan done last Wednesday. We haven't spoken to the doctor about the results yet so we're not too sure what it all really means.
From what we can tell, the tumour in her liver has grown (43mm to 50mm) but there are no new tumours or lesions visible.
With chemo time racing around again next week, we should have the chance to find out more then.
Saturday, November 22, 2008
Trip to Sydney
We had a day trip to Sydney yesterday to see another doctor just to get a second opinion on the whole situation.
Despite spending near enough to 9 hours in the car (which reminded us why we left Sydney), it was a good day.
We had a good chat with the doctor who reinforced that we were doing the right things at the moment and helped track out what sort of options may be worth considering into the future. In essence, it's really keep on going and don't stop asking questions.
After the doctor, we had lunch at one of my favourite restaurants which I first visited over 30 years ago; Lee's Fortuna Court in Crows Nest. Very tasty meal starting with chicken wrapped in rice paper, crispy skin duck and scallops with snow peas. At the end, Alison's fortune cookie read, "Good news is on its way to you". We'll be keeping our eyes open.
Aside from that, it was the first time I can recall spending 9 hours alone with Ali for many, many years. That alone was pretty special and made the trip all worthwhile.
Despite spending near enough to 9 hours in the car (which reminded us why we left Sydney), it was a good day.
We had a good chat with the doctor who reinforced that we were doing the right things at the moment and helped track out what sort of options may be worth considering into the future. In essence, it's really keep on going and don't stop asking questions.
After the doctor, we had lunch at one of my favourite restaurants which I first visited over 30 years ago; Lee's Fortuna Court in Crows Nest. Very tasty meal starting with chicken wrapped in rice paper, crispy skin duck and scallops with snow peas. At the end, Alison's fortune cookie read, "Good news is on its way to you". We'll be keeping our eyes open.
Aside from that, it was the first time I can recall spending 9 hours alone with Ali for many, many years. That alone was pretty special and made the trip all worthwhile.
Monday, November 17, 2008
Doc & Cap treatment no. 3: Day 5
All is going fine so far. Alison has responded as well as can be expected to her latest round of chemo.
She is up and about and getting out to the shops and doing things for short spells. She wears out quickly and needs a sleep but at least she has some energy.
Certainly, she is feeling much better than last time when she ended up in hospital.
Happily, there's not much to report on the health front.
As for other matters, Harry enjoyed his birthday and is very happy to be 8 years old (I know it's a cliché, but the time really has gone SO quickly). He had a busy day with swimming, grandparents visiting and then out for dinner. Annelise handled her brother getting most of the attention very well and must be maturing somewhat.
She is up and about and getting out to the shops and doing things for short spells. She wears out quickly and needs a sleep but at least she has some energy.
Certainly, she is feeling much better than last time when she ended up in hospital.
Happily, there's not much to report on the health front.
As for other matters, Harry enjoyed his birthday and is very happy to be 8 years old (I know it's a cliché, but the time really has gone SO quickly). He had a busy day with swimming, grandparents visiting and then out for dinner. Annelise handled her brother getting most of the attention very well and must be maturing somewhat.
Wednesday, November 12, 2008
Doc & Cap treatment no. 3: Day 0
Hi all
Treatment went ahead today as planned. So far, Ali has been trooping on very well. She had a little snooze earlier in the day just before the kids came home from school but has otherwise been able to stay awake.
We've just come inside to put the kids to bed after sitting outside in the backyard for the past 1/2 hour. Temperature is still warm and a cool breeze was starting to pick up just as dusk was settling in.
The kids were running around the yard and jumping on the trampoline having lots of fun. Everything seemed so peaceful and comfortable.
Ali will probably head off to bed early tonight and try to get some rest. She spent much of last night tossing and turning and didn't sleep very well so I'm sure she'll welcome the fresh sheets tonight.
Hope life is treating you all well and I'll keep posting updates over the next couple of weeks to let you know how Ali is coping with this cycle. They do appear to be catching up with her and her recovery time is slowly extending. We'll be hoping there are no unplanned trips to the hospital this time.
That's all for now, take care.
Treatment went ahead today as planned. So far, Ali has been trooping on very well. She had a little snooze earlier in the day just before the kids came home from school but has otherwise been able to stay awake.
We've just come inside to put the kids to bed after sitting outside in the backyard for the past 1/2 hour. Temperature is still warm and a cool breeze was starting to pick up just as dusk was settling in.
The kids were running around the yard and jumping on the trampoline having lots of fun. Everything seemed so peaceful and comfortable.
Ali will probably head off to bed early tonight and try to get some rest. She spent much of last night tossing and turning and didn't sleep very well so I'm sure she'll welcome the fresh sheets tonight.
Hope life is treating you all well and I'll keep posting updates over the next couple of weeks to let you know how Ali is coping with this cycle. They do appear to be catching up with her and her recovery time is slowly extending. We'll be hoping there are no unplanned trips to the hospital this time.
That's all for now, take care.
Sunday, November 2, 2008
Things are settling down
Compared to last weekend, this one has been downright boring. And thank goodness for that!
We still had Halloween, Little Athletics, baking cakes (an Armenian nutmeg cake - delicious), a trip out to a farm, futsal (Harry did) and friends to visit, but no hospital. Even without the chemo, Ali would probably have fair enough reason to be feeling tired by the time Sunday night comes on around.
She seems to be starting to get on top of things. By now we would usually expect to be rolling into the period between treatments where she should start to pick up and begin feeling normal again. Not quite happening yet but hopefully in the next few days she'll be back to being herself.
It's a school day tomorrow so at least there should be a couple of hours during the day when she'll get some peace (assuming nothing else is planned).
In case anyone has tried to phone, our line is up the creek at the moment and has been since Friday. Optus says that it is looking into it and all should be fixed by Tuesday night. Until then, mobile or email is the best way to catch us if you need to.
We still had Halloween, Little Athletics, baking cakes (an Armenian nutmeg cake - delicious), a trip out to a farm, futsal (Harry did) and friends to visit, but no hospital. Even without the chemo, Ali would probably have fair enough reason to be feeling tired by the time Sunday night comes on around.
She seems to be starting to get on top of things. By now we would usually expect to be rolling into the period between treatments where she should start to pick up and begin feeling normal again. Not quite happening yet but hopefully in the next few days she'll be back to being herself.
It's a school day tomorrow so at least there should be a couple of hours during the day when she'll get some peace (assuming nothing else is planned).
In case anyone has tried to phone, our line is up the creek at the moment and has been since Friday. Optus says that it is looking into it and all should be fixed by Tuesday night. Until then, mobile or email is the best way to catch us if you need to.
Monday, October 27, 2008
Home from hospital
Ali is home!
The oncologist saw her earlier in the day and took some blood tests. The plan was that if her neutrophil levels were at 1.00 or higher, then she would be able to come home. In the end, the results cam back at 1.03; just good enough to get her out of hospital.
She's still pretty quiet but feeling much better than she was on the weekend.
I'm expecting a few quiet days ahead but it is good to have her home.
Thanks for all you good wishes and kind thoughts over the weekend.
The oncologist saw her earlier in the day and took some blood tests. The plan was that if her neutrophil levels were at 1.00 or higher, then she would be able to come home. In the end, the results cam back at 1.03; just good enough to get her out of hospital.
She's still pretty quiet but feeling much better than she was on the weekend.
I'm expecting a few quiet days ahead but it is good to have her home.
Thanks for all you good wishes and kind thoughts over the weekend.
Sunday, October 26, 2008
Hospital updates - Sunday 26/10
11:00 am - Ali is still in the emergency ward as they try to find a bed for her. The plan at this stage is to find somewhere that she can be in a room by herself to minimise the risk of infection and to get her under the watch of an oncologist. She's asking for her 1/4 strength A2 skinny latte and a newspaper so she's not feeling too bad.
3:00 pm - We now have a room and the coffee was delivered. Ali moved in just after 12:00pm. It hasn't all been smooth sailing though.
When I went to visit, they couldn't find her on the computers. Half a dozen phone calls later and there was still no Alison Pike resident in the wards. This is after I had been speaking with her and she was just about to jump into the shower, so I knew she was there!
The receptionist got someone to cover for her and made her way to the ward to give them a hard time while I bought the coffee and a sandwich for Alison. We finally managed to find Alison in room no. 1, leaving a very frustrated receptionist apologising for her colleagues.
So as far as it all goes, she is doing pretty well. Her temperature is back down to normal and she is eating. We still need to gown up, with mask & gloves when we visit and Ali is on a special neutropenic diet to minimise any chance of infection.
Maybe if she is still in there on Friday we can draw scary faces on our masks for Halloween.
3:00 pm - We now have a room and the coffee was delivered. Ali moved in just after 12:00pm. It hasn't all been smooth sailing though.
When I went to visit, they couldn't find her on the computers. Half a dozen phone calls later and there was still no Alison Pike resident in the wards. This is after I had been speaking with her and she was just about to jump into the shower, so I knew she was there!
The receptionist got someone to cover for her and made her way to the ward to give them a hard time while I bought the coffee and a sandwich for Alison. We finally managed to find Alison in room no. 1, leaving a very frustrated receptionist apologising for her colleagues.
So as far as it all goes, she is doing pretty well. Her temperature is back down to normal and she is eating. We still need to gown up, with mask & gloves when we visit and Ali is on a special neutropenic diet to minimise any chance of infection.
Maybe if she is still in there on Friday we can draw scary faces on our masks for Halloween.
Saturday, October 25, 2008
High temperature and a trip to the hospital
Hi all - unfortunately Ali is spending tonight in the hospital. Nothing too serious at this stage, she's had a high temperature and her immune system is down so they are keeping her in for observation and isolation.
Since yesterday, Ali's had a bit of a temperature, been feeling unwell and had the chills. This alone wasn't unexpected as 'flu-like' symptoms are common with one of her medications. Today though, when her temperature hit 39 degrees, we thought it was worth checking in with the community nurses.
The community nurse recommended we take Ali into emergency and let the doctors work out what to do next.
We went to Calvary emergency ward and moved through the first part of the system fairly quickly. Ali had her bloods taken and came back with low neutrophils, meaning her immune system was down.
At this stage, the doctors are recommending that she stays in for a few days. When the kids and I went back in to drop off some clothes, toothbrush etc. we had to put on masks and a gown so that we didn't bring in any infection. The kids thought it was odd and that we looked like a couple of ducks (the masks were yellow).
Right now, Ali is still processing through the emergency ward as they work out where to put her in the main hospital.
In summary, certainly not how we planned to spend the night, but then, there's no reason to panic either. As we find out more, I'll update the blog.
Since yesterday, Ali's had a bit of a temperature, been feeling unwell and had the chills. This alone wasn't unexpected as 'flu-like' symptoms are common with one of her medications. Today though, when her temperature hit 39 degrees, we thought it was worth checking in with the community nurses.
The community nurse recommended we take Ali into emergency and let the doctors work out what to do next.
We went to Calvary emergency ward and moved through the first part of the system fairly quickly. Ali had her bloods taken and came back with low neutrophils, meaning her immune system was down.
At this stage, the doctors are recommending that she stays in for a few days. When the kids and I went back in to drop off some clothes, toothbrush etc. we had to put on masks and a gown so that we didn't bring in any infection. The kids thought it was odd and that we looked like a couple of ducks (the masks were yellow).
Right now, Ali is still processing through the emergency ward as they work out where to put her in the main hospital.
In summary, certainly not how we planned to spend the night, but then, there's no reason to panic either. As we find out more, I'll update the blog.
Wednesday, October 22, 2008
Doc & Cap treatment no. 2: Day 0
Ali's blood was good, treatment went ahead today and all was as we expected. Ali had cold hands when she had to put on the ice gloves and came home and had an afternoon snooze.
She was well enough to eat some dinner but I'm not expecting her to stay up much past 8pm.
The kids have been a little tiring this afternoon, especially one little Miss whose behaviour was so poor, she missed out while her brother ate McDonalds for dinner.
Regardless, we'll carry on and see what tomorrow brings. Thanks for dropping by.
She was well enough to eat some dinner but I'm not expecting her to stay up much past 8pm.
The kids have been a little tiring this afternoon, especially one little Miss whose behaviour was so poor, she missed out while her brother ate McDonalds for dinner.
Regardless, we'll carry on and see what tomorrow brings. Thanks for dropping by.
Sunday, October 19, 2008
Fish Pie Update
OK, I have to admit, the fish pie was not too bad. Not too good but not too bad. Once you get over Alison mixing up coriander when she was meant to buy flat leaf parsley!
In the end it was just a little bland for my liking but then it's better to take a cautious approach and not try to put too much into a dish.
The kids hated it, Annelise tried some but Harrison would rather chew on some ants (which for some strange reason, he has eaten 2 or 3 ants over the weekend - says they taste a little spicy for him).
We all survived this meal.
In the end it was just a little bland for my liking but then it's better to take a cautious approach and not try to put too much into a dish.
The kids hated it, Annelise tried some but Harrison would rather chew on some ants (which for some strange reason, he has eaten 2 or 3 ants over the weekend - says they taste a little spicy for him).
We all survived this meal.
Saturday, October 18, 2008
Doc & Cap treatment no. 2: Day -4
Welcome back!
It's been a little while since the last post. Happily, not too much has happened since the last one.
Alison's feeling better now. She started feeling her 'normal' self around last Sunday/Monday.
Last Saturday night we had a night out at Tilley's to watch the Whitlams. It was a great night out; they reserved a booth for us with the best view in the house which meant that we didn't have to get there early and Ali didn't have to mingle with people that may pass on some nasty disease while her immune system was weakened.
Annelise has started Little Athletics and seems to enjoy it. Harry is just busy being himself.
We're starting to think less about the chemo just gone and more about the next one so I guess things are moving on.
Alison's planning on cooking a fish pie tonight, so please redirect your good wishes and healthy thoughts to the rest of the family for just a short while (24 hr Macca's nearby and ready as backup). I'll be sure to report back on how it goes.
It's been a little while since the last post. Happily, not too much has happened since the last one.
Alison's feeling better now. She started feeling her 'normal' self around last Sunday/Monday.
Last Saturday night we had a night out at Tilley's to watch the Whitlams. It was a great night out; they reserved a booth for us with the best view in the house which meant that we didn't have to get there early and Ali didn't have to mingle with people that may pass on some nasty disease while her immune system was weakened.
Annelise has started Little Athletics and seems to enjoy it. Harry is just busy being himself.
We're starting to think less about the chemo just gone and more about the next one so I guess things are moving on.
Alison's planning on cooking a fish pie tonight, so please redirect your good wishes and healthy thoughts to the rest of the family for just a short while (24 hr Macca's nearby and ready as backup). I'll be sure to report back on how it goes.
Monday, October 6, 2008
Doc & Cap treatment no. 1: Day +5
Long weekend is over but the school holidays live on.
It seemed to be such a busy weekend, even with three days. Alison is still recovering, she is feeling off colour but not housebound. A side-effect appears to be tenderness and swelling in her mouth and down her throat. This is quite uncomfortable and makes it difficult to eat some foods. I'll be nagging her to follow up with the doc if it doesn't go away or get better soon.
Other than the tenderness, a general mild nausea and a continuing feeling of tiredness, Ali seems to be getting through this treatment. At least she feels well enough to get out to the shops on the odd occasion (I wish there was a way to stop that one!) and potters around the house well enough.
Kids are doing well. They had a great time down the coast last week and were pretty well exhausted when they got home. That lasted until they woke up the next morning and then life was back to normal. One more week before they start their final term for the year. The last term for Harry before he's off to a different school next year.
As for me, I'm well, although it was a very stressful day yesterday when Manly and Melbourne played in the NRL Grand Final. I'm not a huge fan of the rugby league but I usually really enjoy watching the State of Origins and Grand Final each year.
It almost goes without saying that I'm quite happy to support anyone who is playing against Manly but I was quite lost yesterday. Instead of wanting either one of them to win, it was more a case of not being able to really support either team. Still, I watched most of the game and after a month on the wagon, it was good just to sit down with a beer, relax and watch the footy.
Anyway - back to work tomorrow.
It seemed to be such a busy weekend, even with three days. Alison is still recovering, she is feeling off colour but not housebound. A side-effect appears to be tenderness and swelling in her mouth and down her throat. This is quite uncomfortable and makes it difficult to eat some foods. I'll be nagging her to follow up with the doc if it doesn't go away or get better soon.
Other than the tenderness, a general mild nausea and a continuing feeling of tiredness, Ali seems to be getting through this treatment. At least she feels well enough to get out to the shops on the odd occasion (I wish there was a way to stop that one!) and potters around the house well enough.
Kids are doing well. They had a great time down the coast last week and were pretty well exhausted when they got home. That lasted until they woke up the next morning and then life was back to normal. One more week before they start their final term for the year. The last term for Harry before he's off to a different school next year.
As for me, I'm well, although it was a very stressful day yesterday when Manly and Melbourne played in the NRL Grand Final. I'm not a huge fan of the rugby league but I usually really enjoy watching the State of Origins and Grand Final each year.
It almost goes without saying that I'm quite happy to support anyone who is playing against Manly but I was quite lost yesterday. Instead of wanting either one of them to win, it was more a case of not being able to really support either team. Still, I watched most of the game and after a month on the wagon, it was good just to sit down with a beer, relax and watch the footy.
Anyway - back to work tomorrow.
Thursday, October 2, 2008
Doc & Cap treatment no. 1: Day +1
Seemed to be a fairly good day for Ali today. She managed to sleep in until about 8:30am after a fair night's sleep.
She was up during the day and managed to get out of the house. A couple of hours lie down and rest was all she needed.
Her tummy feels a bit funny and she is weary but she's looking pretty good when all things are taken into perspective.
So far, these drugs don't appear to make her feel as bad as the previous treatment regime. Then again, she will be taking her pills for 14 days so it's possible that things will drag out longer this time. Just have to wait and see.
She was up during the day and managed to get out of the house. A couple of hours lie down and rest was all she needed.
Her tummy feels a bit funny and she is weary but she's looking pretty good when all things are taken into perspective.
So far, these drugs don't appear to make her feel as bad as the previous treatment regime. Then again, she will be taking her pills for 14 days so it's possible that things will drag out longer this time. Just have to wait and see.
Wednesday, October 1, 2008
New treatment no. 1
Hope I've got this in early enough for most of you.
All went ahead today. Alison's neutrophils jumped from 0.96 to over 8, spurred on by the steroids that she was taking.
So far she doesn't feel as sick as she did with the previous treatment, although to me she looks more tired and her face is a little flushed and puffy (will need to keep an eye on her).
This treatment took just over an hour today and there are then pills for the next 14 days.
It wasn't all smooth sailing though today. First of all, it took three tries to get the needle into the right spot. That's on top of a needle this morning for a blood test and another one on Monday, also for a blood test.
Next, there were the ice gloves. For those who don't know, Ali doesn't have very good circulation to her hands. She's been known to have yellow fingers when it's cold. So when the nurses told her that she should wear ice gloves to minimise the side effects of the chemo, she was less than impressed.
The final bump for the day was that the nurses recommended Ali wear dark nail polish. This is because the bumps & discolouration that can occur to her nails may be accentuated by sunlight. Thus, dark nail polish may help minimise this side effect.
So, if you see Ali wandering around with no hair and dark nails, she hasn't gone goth or punk, it's just the way it is.
All went ahead today. Alison's neutrophils jumped from 0.96 to over 8, spurred on by the steroids that she was taking.
So far she doesn't feel as sick as she did with the previous treatment, although to me she looks more tired and her face is a little flushed and puffy (will need to keep an eye on her).
This treatment took just over an hour today and there are then pills for the next 14 days.
It wasn't all smooth sailing though today. First of all, it took three tries to get the needle into the right spot. That's on top of a needle this morning for a blood test and another one on Monday, also for a blood test.
Next, there were the ice gloves. For those who don't know, Ali doesn't have very good circulation to her hands. She's been known to have yellow fingers when it's cold. So when the nurses told her that she should wear ice gloves to minimise the side effects of the chemo, she was less than impressed.
The final bump for the day was that the nurses recommended Ali wear dark nail polish. This is because the bumps & discolouration that can occur to her nails may be accentuated by sunlight. Thus, dark nail polish may help minimise this side effect.
So, if you see Ali wandering around with no hair and dark nails, she hasn't gone goth or punk, it's just the way it is.
Monday, September 29, 2008
Chemo Delayed - Until Wednesday
Just a quick one this time (for the one person who said in the survey that the posts were 'sometimes' too long).
Alison's chemo has been delayed, probably until Wednesday. Her neutrophils were not high enough, same problem as last time chemo was delayed.
She'll have another blood test Wednesday morning and hopefully be right to start her new treatment then.
It's a major bummer but there's not much we can do about it.
Alison's chemo has been delayed, probably until Wednesday. Her neutrophils were not high enough, same problem as last time chemo was delayed.
She'll have another blood test Wednesday morning and hopefully be right to start her new treatment then.
It's a major bummer but there's not much we can do about it.
Thursday, September 25, 2008
New treatment starting next week
It's been a busy couple of days. After getting the results from the scan, we managed to get in touch with Alison's oncologist who was able to fit us in for an appointment during her lunch break today.
We were right that the results were disappointing and not what we were hoping for. It appears that the initial regime of chemo was not working and we now need to try a different tack.
The doctor has talked to us about how she would like to proceed and what drugs she will now give to Alison (docetaxel and capecitabine). Treatments will still be every three weeks, however there will be some differences:
So long as it works, all this doesn't really matter that much.
Looking at the big picture, this probably means that Ali is starting off on another six cycle (18 week) treatment. As before, we expect that there will be tests around the end of November, just before the fourth cycle.
If all runs to plan, she's likely to have a treatment two days before Christmas which will mean that we will probably have a fairly quiet time at home that day.
Her first cycle will probably start next Tuesday, 30 September, subject to being able to get booked in. If not, then it will be Wednesday.
We were right that the results were disappointing and not what we were hoping for. It appears that the initial regime of chemo was not working and we now need to try a different tack.
The doctor has talked to us about how she would like to proceed and what drugs she will now give to Alison (docetaxel and capecitabine). Treatments will still be every three weeks, however there will be some differences:
- one of the drugs will by administered by IV through the hospital
- the other drug is a tablet that will need to be taken morning and night for 14 days each cycle
- Ali will need to take some steroid tablets on the days before, on, and after chemo
- this course should not make her feel as nauseous (although it may) which means she won't need to take as many anti-nausea drugs
- the tiredness may be greater
- she could experience watery eyes and dryness of her hands to the point where the skin starts to crack
- she may get pins and needles in her hands and feet
- her nails may become discoloured and uncomfortable
So long as it works, all this doesn't really matter that much.
Looking at the big picture, this probably means that Ali is starting off on another six cycle (18 week) treatment. As before, we expect that there will be tests around the end of November, just before the fourth cycle.
If all runs to plan, she's likely to have a treatment two days before Christmas which will mean that we will probably have a fairly quiet time at home that day.
Her first cycle will probably start next Tuesday, 30 September, subject to being able to get booked in. If not, then it will be Wednesday.
Wednesday, September 24, 2008
CT Scan Results - Going the wrong way
Scan results are in. Sadly they don't look good from what we can tell.
The report that goes with the scan states that the lesion in Alison's liver has grown to 8cm and that they have also identified an additional lesion in her hip that we did not know about previously (6cm).
What this means as far as treatment and next steps we won't know until Monday.
Prior to the test, the oncologist advised that if it appeared that the chemo wasn't working effectively, she still had a couple of other options to try. I guess that we get to find out soon.
I'll update again when we have some more news.
Thanks for checking in.
The report that goes with the scan states that the lesion in Alison's liver has grown to 8cm and that they have also identified an additional lesion in her hip that we did not know about previously (6cm).
What this means as far as treatment and next steps we won't know until Monday.
Prior to the test, the oncologist advised that if it appeared that the chemo wasn't working effectively, she still had a couple of other options to try. I guess that we get to find out soon.
I'll update again when we have some more news.
Thanks for checking in.
Chemo 3: Day 16
All is going well at the moment. We're into the third week of the chemo cycle with the next treatment due on Monday.
Ali started feeling much better last week and even mentioned that it seems odd that she can feel so good with everything that's going on insider her body.
We all had a couple of days down at Mollymook last weekend which was great. The weather was a bit windy but it was still good to get down there and catch up with my parents (it was my mum's birthday ). The kids really enjoy getting to the beach, even though Harrison later complained about the sand.
We are a bit anxious today as Ali is having a CT scan to see how well the chemo is slowing down the cancer. Not too sure whether we will be able to interpret the results because it depends on how technical the report is and whether it references back to earlier scans.
Anyway, doesn't really matter whether we can read it, we're just thinking and hoping it's about time for some good news.
Ali started feeling much better last week and even mentioned that it seems odd that she can feel so good with everything that's going on insider her body.
We all had a couple of days down at Mollymook last weekend which was great. The weather was a bit windy but it was still good to get down there and catch up with my parents (it was my mum's birthday ). The kids really enjoy getting to the beach, even though Harrison later complained about the sand.
We are a bit anxious today as Ali is having a CT scan to see how well the chemo is slowing down the cancer. Not too sure whether we will be able to interpret the results because it depends on how technical the report is and whether it references back to earlier scans.
Anyway, doesn't really matter whether we can read it, we're just thinking and hoping it's about time for some good news.
Saturday, September 13, 2008
Chemo 3: Day 5
Things are starting to pick up from here.
Ali seems to be over the worst of the nausea and she is still tired but doesn't need to sleep all day. Although she certainly would if she could and she is far from feeling 'normal'.
She didn't have a good night sleep on Thursday but that was because of cats and possums rather than anything specifically to do with the chemotherapy. I'm still not 100% so I had been shunted off to the spare room which meant that I didn't hear any of the late night commotions and had a great night's sleep.
Big soccer gala day for Harrison this weekend, last games for this year. Annelise gets registered for Little Athletics; we'll see if that can take some of the edge off her seemingly boundless energy levels.
Take care everyone and go the Wallabies! (Harry & I are very glad we don't have to wake up in the early hours of the morning to watch Saturday night's Test match.)
Ali seems to be over the worst of the nausea and she is still tired but doesn't need to sleep all day. Although she certainly would if she could and she is far from feeling 'normal'.
She didn't have a good night sleep on Thursday but that was because of cats and possums rather than anything specifically to do with the chemotherapy. I'm still not 100% so I had been shunted off to the spare room which meant that I didn't hear any of the late night commotions and had a great night's sleep.
Big soccer gala day for Harrison this weekend, last games for this year. Annelise gets registered for Little Athletics; we'll see if that can take some of the edge off her seemingly boundless energy levels.
Take care everyone and go the Wallabies! (Harry & I are very glad we don't have to wake up in the early hours of the morning to watch Saturday night's Test match.)
Monday, September 8, 2008
Chemo 3: Day 0
Here we are again - CHEMO DAY.
Seems to come around so quickly, must be even more so for Ali.
Everything went well today.
Alison's white blood cell count was fine and she received her treatment as planned. Much better than the previous time when we had to wait a few days. Unfortunately I didn't get to go in with her today as I have been home ill since last Friday and it's not a good idea to share germs with a room full of people with depleted immune systems.
Anyway, after the treatment Ali arrived home shortly before 4pm and had the house to herself for a while as I took the kids off so Annelise could do her gymnastics. She was snoozing on the lounge when we got home with bags of toxic Maccas for the kids (even they know it's not good for them, "...but it tastes so nice" they say, where did I fail?)
Ali managed to stay up for a very tasty penne dish but was head down again by 7pm. She's nauseous tonight (not due to the dinner) and her head feels a mess. Hopefully it will improve through the night.
We have now officially made the halfway mark of the treatment.
Typically, the negative effects are supposed to get stronger as the chemo wears on. Let's just hope this doesn't happen so much in this case.
So there you have it, all the latest news. I guess it's kind of a long way of simply saying she had her medication came home and slept. (Just think, if I'd put that sentence first, there would have been no need to write the rest.)
Seems to come around so quickly, must be even more so for Ali.
Everything went well today.
Alison's white blood cell count was fine and she received her treatment as planned. Much better than the previous time when we had to wait a few days. Unfortunately I didn't get to go in with her today as I have been home ill since last Friday and it's not a good idea to share germs with a room full of people with depleted immune systems.
Anyway, after the treatment Ali arrived home shortly before 4pm and had the house to herself for a while as I took the kids off so Annelise could do her gymnastics. She was snoozing on the lounge when we got home with bags of toxic Maccas for the kids (even they know it's not good for them, "...but it tastes so nice" they say, where did I fail?)
Ali managed to stay up for a very tasty penne dish but was head down again by 7pm. She's nauseous tonight (not due to the dinner) and her head feels a mess. Hopefully it will improve through the night.
We have now officially made the halfway mark of the treatment.
Typically, the negative effects are supposed to get stronger as the chemo wears on. Let's just hope this doesn't happen so much in this case.
So there you have it, all the latest news. I guess it's kind of a long way of simply saying she had her medication came home and slept. (Just think, if I'd put that sentence first, there would have been no need to write the rest.)
Monday, September 1, 2008
Chemo 3: Day -7 What's happening now?
Things have been pleasantly quiet recently. No medical tests, no more news from doctors, no sickness! Boring is good.
For anyone who has been counting weeks, Ali would have been due for her chemo treatment today if she hadn't had problems with her white cell counts last time. We've pushed the treatment back to next Monday.
It will be a pretty big milestone for a couple of reasons.
First, it will mean Ali is halfway through her chemo. We're expecting that she will have six treatments all up this time.
Second, Ali is due to have some scans shortly after this next treatment. As there are no tumour markers or other blood tests to monitor Ali's progress, CT scan is the best way to observe how everything is progressing. These tests will be important because it will give the doctors an indication of how effective the chemo is and how aggressive the cancer may be.
So, as next week gets closer, we're keeping our fingers crossed and hoping that we start to get some good news. We'll be sure to let you all know how things go as we get the results.
For anyone who has been counting weeks, Ali would have been due for her chemo treatment today if she hadn't had problems with her white cell counts last time. We've pushed the treatment back to next Monday.
It will be a pretty big milestone for a couple of reasons.
First, it will mean Ali is halfway through her chemo. We're expecting that she will have six treatments all up this time.
Second, Ali is due to have some scans shortly after this next treatment. As there are no tumour markers or other blood tests to monitor Ali's progress, CT scan is the best way to observe how everything is progressing. These tests will be important because it will give the doctors an indication of how effective the chemo is and how aggressive the cancer may be.
So, as next week gets closer, we're keeping our fingers crossed and hoping that we start to get some good news. We'll be sure to let you all know how things go as we get the results.
Sunday, August 24, 2008
1.6180339887498948482...Perfection!
Now what is he on about you ask? Well, read on to find out what this number and Alison have in common.
Perfection is usually difficult to define and subject to much argument as it is often a matter of opinion or quite simply, unachievable.
As some of you may be aware, at one stage when Ali was being examined by one of her doctors, the doctor commented that she was of 'perfect proportion'. Now this was something that I was already aware of (and said at the time it was one of the reasons I married her) but I didn't realise just how technical this could all get.
An article sent through by one of Ali's good friends describing The Golden Ratio sparked my curiosity and led me to some interesting reading. The Golden Ratio is used to describe the relationship between two measures. More details can be found through a quick internet search.
As well as puzzling me, it seems The Golden Ratio dates back nearly 2500 years and has played on the minds of mathematicians, philosophers and artists including:
Perfection is usually difficult to define and subject to much argument as it is often a matter of opinion or quite simply, unachievable.
As some of you may be aware, at one stage when Ali was being examined by one of her doctors, the doctor commented that she was of 'perfect proportion'. Now this was something that I was already aware of (and said at the time it was one of the reasons I married her) but I didn't realise just how technical this could all get.
An article sent through by one of Ali's good friends describing The Golden Ratio sparked my curiosity and led me to some interesting reading. The Golden Ratio is used to describe the relationship between two measures. More details can be found through a quick internet search.
As well as puzzling me, it seems The Golden Ratio dates back nearly 2500 years and has played on the minds of mathematicians, philosophers and artists including:
- Pythagorous
- Plato
- Euclid
- Leonarda da Vinci
- Salvador Dali
Wednesday, August 20, 2008
1,000+ visits
We've just passed 1,000 visits to the blog! And there are more than 200 of you out there that have visited this blog.
Quite incredible, but then again, this is Ali that we're talking about and she seems to make an impression on the people she meets.
Thanks to you all for following the posts and your supportive comments.
Survey Results - Ali thinks the posts are too long.
Well, well. 55 of you were kind enough to vote in the survey.
Alison was very disappointed with 54 of you who disagreed with her and thought that the length of the posts was SPOT ON!
The other vote went to MOSTLY OK, BUT...
While Alison wonders whether you have all lost your sense of good judgement, I'm grateful for the show of faith and will keep on blogging! (Plus, it's not often that I am statistically proven to be correct - although I'm sure there is a loop-hole here somewhere and Ali will point out she was right all along.)
Just for the record, the question, answers and responses are below. Stay tuned for the next survey soon.
Alison thinks these posts are too long and you'll all get bored of reading them. Is she right? Do you want shorter posts? Have your say below now!
1. YES... I like to keep up with the news but these postings nearly put me to sleep (0)
2. KINDA LIKE, SORT OF BORING, YOU KNOW... Sometimes they waffle, a bit shorter would be better (0)
3. MOSTLY OK, BUT... Most of them are good but a couple did drag on (1)
4. SPOT ON... Keep it up! (54)
Alison was very disappointed with 54 of you who disagreed with her and thought that the length of the posts was SPOT ON!
The other vote went to MOSTLY OK, BUT...
While Alison wonders whether you have all lost your sense of good judgement, I'm grateful for the show of faith and will keep on blogging! (Plus, it's not often that I am statistically proven to be correct - although I'm sure there is a loop-hole here somewhere and Ali will point out she was right all along.)
Just for the record, the question, answers and responses are below. Stay tuned for the next survey soon.
Alison thinks these posts are too long and you'll all get bored of reading them. Is she right? Do you want shorter posts? Have your say below now!
1. YES... I like to keep up with the news but these postings nearly put me to sleep (0)
2. KINDA LIKE, SORT OF BORING, YOU KNOW... Sometimes they waffle, a bit shorter would be better (0)
3. MOSTLY OK, BUT... Most of them are good but a couple did drag on (1)
4. SPOT ON... Keep it up! (54)
Friday, August 15, 2008
Chemo 2: Day 1 Pike wipeout - well... 4/5 wipeout!
A quick update for you all on our day so far.
Alison is doing OK. Her head is still fuzzy and she is tired but not feeling too nauseous at all. She's had some breakfast, a cup of tea, some biscuits and fruit already so the signs are good. She's even talking about having some of the delicious home made meat pie that was left over from last night for her lunch.
Ali took the next step with hair this morning and let me have a go with the clippers set at 0. All up she does have a pretty even and round head.
Harrison is home yet again. He was looking pretty poor last night and went off to bed early without arguing, a sure sign he's not feeling well. This morning he had a bit of a fever and just didn't look himself so it was better to give him the whole weekend to recover.
Annelise is also home today. She's picked up a dose of conjunctivitis and had trouble opening her eyes. Again, something that you don't want to be sharing around.
Abbey had a bee sting in one of her front legs. She too is now recovering quietly.
Just in case you're wondering, I'm fine and looking after the lot.
Alison is doing OK. Her head is still fuzzy and she is tired but not feeling too nauseous at all. She's had some breakfast, a cup of tea, some biscuits and fruit already so the signs are good. She's even talking about having some of the delicious home made meat pie that was left over from last night for her lunch.Ali took the next step with hair this morning and let me have a go with the clippers set at 0. All up she does have a pretty even and round head.
Harrison is home yet again. He was looking pretty poor last night and went off to bed early without arguing, a sure sign he's not feeling well. This morning he had a bit of a fever and just didn't look himself so it was better to give him the whole weekend to recover.
Annelise is also home today. She's picked up a dose of conjunctivitis and had trouble opening her eyes. Again, something that you don't want to be sharing around.
Abbey had a bee sting in one of her front legs. She too is now recovering quietly.
Just in case you're wondering, I'm fine and looking after the lot.
"Kill the f#@%ing possum"
That's what Ali said to me when I asked her why she was wandering around our backyard at 2:45 am this morning!
This also explains why I am up at 3:00am writing on the blog. It's because we just had a little excitement at our house with some native friends.
I was nudged out of a sound sleep by what sounded like one of the sliding doors opening and closing. This only slightly woke me up and I thought I may have been dreaming. A bit later, there was more noise and it was the type that didn't fit with the normal night sounds.
When I opened my eyes to see what was going on, the lights outside were on, so I got up to investigate.
Ali was outside hosing the trees! I told her to come inside and asked what she thought she was doing. This is when she burst out with the deadly threat that makes up the title of this post.
It seems that she 'heard' a noise which she described as a mix between a whipper-snipper that won't start properly and a chainsaw, coming from the backyard. Not only that, but it seemed to be moving among the branches of the trees.
Now, what she actually thought she was going to achieve with a hose I haven't yet worked out. Whether it was to freeze the poor little possums or knock them out of the tree I will try to work out later.
The scary thing is, after I had convinced her to leave the possums and come inside (which wasn't as easy as it should have been in the middle of a cold, Canberra winter's night) she was mumbling and asking me to find Harrison's super-soaker water pistol so she could have a second go at them. When I told her she should not be out there and I wouldn't get the water pistol for her to shoot the possums, she then wanted it on standby in case they came back!
All is better now and seems to have settled down. Ali has been tucked into bed and a sleeping tablet should help her relax enough to sleep through until morning. It appears that one of the side-effects of the chemo is she has trouble sleeping.
As for the possums? Well, I haven't seen or heard anything yet. Maybe they were there, just maybe...
This also explains why I am up at 3:00am writing on the blog. It's because we just had a little excitement at our house with some native friends.
I was nudged out of a sound sleep by what sounded like one of the sliding doors opening and closing. This only slightly woke me up and I thought I may have been dreaming. A bit later, there was more noise and it was the type that didn't fit with the normal night sounds.
When I opened my eyes to see what was going on, the lights outside were on, so I got up to investigate.
Ali was outside hosing the trees! I told her to come inside and asked what she thought she was doing. This is when she burst out with the deadly threat that makes up the title of this post.
It seems that she 'heard' a noise which she described as a mix between a whipper-snipper that won't start properly and a chainsaw, coming from the backyard. Not only that, but it seemed to be moving among the branches of the trees.
Now, what she actually thought she was going to achieve with a hose I haven't yet worked out. Whether it was to freeze the poor little possums or knock them out of the tree I will try to work out later.
The scary thing is, after I had convinced her to leave the possums and come inside (which wasn't as easy as it should have been in the middle of a cold, Canberra winter's night) she was mumbling and asking me to find Harrison's super-soaker water pistol so she could have a second go at them. When I told her she should not be out there and I wouldn't get the water pistol for her to shoot the possums, she then wanted it on standby in case they came back!
All is better now and seems to have settled down. Ali has been tucked into bed and a sleeping tablet should help her relax enough to sleep through until morning. It appears that one of the side-effects of the chemo is she has trouble sleeping.
As for the possums? Well, I haven't seen or heard anything yet. Maybe they were there, just maybe...
Thursday, August 14, 2008
Chemo 2: Day 0
Chemo treatment went ahead today as planned.
Alison is now home and snoozing away. We're expecting things to be quiet for the next few days at least.
They gave her a new mix today and have tried to make it so that she doesn't feel as sick afterwards this time. I think she knows now to take the anti-nausea, anti-coldsore and other stuff to help sooner rather than wait to see if the sick feeling passes.
I'll be making sure she lies low for a while and doesn't get up and around until she's feeling much better.
Next post is likely to be Sunday night unless we have some excitement before then (fingers crossed that we don't, there's been too much excitement lately).
PS - As you already know, Ali is a fighter. Here's an old photo of when Ali went to the 'dark' side and picked a light sabre fight with a six-year old Harrison...
Alison is now home and snoozing away. We're expecting things to be quiet for the next few days at least.
They gave her a new mix today and have tried to make it so that she doesn't feel as sick afterwards this time. I think she knows now to take the anti-nausea, anti-coldsore and other stuff to help sooner rather than wait to see if the sick feeling passes.
I'll be making sure she lies low for a while and doesn't get up and around until she's feeling much better.
Next post is likely to be Sunday night unless we have some excitement before then (fingers crossed that we don't, there's been too much excitement lately).
PS - As you already know, Ali is a fighter. Here's an old photo of when Ali went to the 'dark' side and picked a light sabre fight with a six-year old Harrison...
Tuesday, August 12, 2008
Hair today, gone tomorrow
Well...gone today really. Ali got the no. 3 buzz cut today.
I actually think she looks good and that she should have tried it long ago. She's not so sure.
First it was a doctor that told her she was perfectly proportioned, now it's a hairdresser saying that she has a perfectly shaped head (of course) and one that is very suited to short hair. Much like some of those models that just have such defining facial features, they still look beautiful without hair.
There is a wig that she has chosen (only cost the same as three visits to the hairdresser) and that looks good too. Ali did really well choosing the style and colour as it looks totally natural.
Anyway, no photos yet but I'll see what I can do.
I actually think she looks good and that she should have tried it long ago. She's not so sure.
First it was a doctor that told her she was perfectly proportioned, now it's a hairdresser saying that she has a perfectly shaped head (of course) and one that is very suited to short hair. Much like some of those models that just have such defining facial features, they still look beautiful without hair.
There is a wig that she has chosen (only cost the same as three visits to the hairdresser) and that looks good too. Ali did really well choosing the style and colour as it looks totally natural.
Anyway, no photos yet but I'll see what I can do.
Monday, August 11, 2008
Chemo 2: Day -3 (Change in plans!)
False alarm with the chemotherapy today.
We were all set and waiting at the hospital, Ali had the canula in her arm and book by her side. Then we found out her blood had not come back to normal levels yet, specifically the neutrophils were down (neutropenia for the latin fans out there). The whole thing has been postponed until Thursday, when Ali will have another blood test early in the morning and then, hoping that her levels are normal again, the doctors will go ahead with the treatment.
(What are neutrophils? They are a type of white blood cell and make up about 50% - 70% of our white blood cells. They are the first set of immune cells that arrive at a site of infection.)
It was pretty frustrating for Ali as she had got her head around being ready for the next dose, the house was all clean and she was prepared for the reaction to the drugs. Now she will have to build herself up again for this Thursday. We hope it all goes to plan this time.
Hair, hair everywhere
It has started, Ali's hair is slowing coming out. It began about Thursday when she noticed more than usual hair getting caught on her brush.
At the moment it's getting a bit messy and as each day goes, more seems to come out. There's an appointment with the hairdresser/wig-fitter tomorrow. Will let you know how this goes.
Spinal metastasis
In our meeting with the oncologist today, we discussed a scan that Ali had just done last week. The results showed that it is likely that the cancer has spread to the vertebrae in her spine (T6 and possibly T7). While not good, the view at the moment is that there is nothing we need to do on this at the moment as the chemo should be affecting the cells located in her spine. There are options and certainly, if it starts causing trouble then we'll be looking to do something. But for now, it's carry on and we'll keep an eye on it.
That's it for now. I'll try to post again tomorrow night and if not, then at the very least I'll be back to let you know how the chemo goes on Thursday.
We were all set and waiting at the hospital, Ali had the canula in her arm and book by her side. Then we found out her blood had not come back to normal levels yet, specifically the neutrophils were down (neutropenia for the latin fans out there). The whole thing has been postponed until Thursday, when Ali will have another blood test early in the morning and then, hoping that her levels are normal again, the doctors will go ahead with the treatment.
(What are neutrophils? They are a type of white blood cell and make up about 50% - 70% of our white blood cells. They are the first set of immune cells that arrive at a site of infection.)
It was pretty frustrating for Ali as she had got her head around being ready for the next dose, the house was all clean and she was prepared for the reaction to the drugs. Now she will have to build herself up again for this Thursday. We hope it all goes to plan this time.
Hair, hair everywhere
It has started, Ali's hair is slowing coming out. It began about Thursday when she noticed more than usual hair getting caught on her brush.
At the moment it's getting a bit messy and as each day goes, more seems to come out. There's an appointment with the hairdresser/wig-fitter tomorrow. Will let you know how this goes.
Spinal metastasis
In our meeting with the oncologist today, we discussed a scan that Ali had just done last week. The results showed that it is likely that the cancer has spread to the vertebrae in her spine (T6 and possibly T7). While not good, the view at the moment is that there is nothing we need to do on this at the moment as the chemo should be affecting the cells located in her spine. There are options and certainly, if it starts causing trouble then we'll be looking to do something. But for now, it's carry on and we'll keep an eye on it.
That's it for now. I'll try to post again tomorrow night and if not, then at the very least I'll be back to let you know how the chemo goes on Thursday.
Sunday, August 10, 2008
Escape to Sydney
Alison & I managed to pack our bags & head to Sydney for a night this weekend. I had a dinner to attend with work so we had flights and accommodation sorted and, with a little bit of help from a friend of a friend (thank you to both of you), we were treated to a very relaxing and enjoyable time.
We arrived around lunchtime and Ali went straight to the Westin where we were staying, while I dropped into the office to finish off some work. After Ali had a bite to eat and a snooze, we caught up later in the afternoon for high tea. Alison being Alison, this meant starting off with some Moet of course. More food, more champagne and some delicious tea (apple & amaretto for me and a white tea for Ali) and we had to retire to our room overlooking Martin Pl.
When we got to the room, we found a bottle of fantastic French champagne, the name of which I have unfortunately forgotten, and a basket of exotic chocolates (even the basket was made of chocolate). With a full glass and handful of chocky delights, Ali soaked herself in the bath for the next half hour or so until it was time to get ready for dinner.
Dinner went well and we had our fair share of chatting away and good food & wine. However, the big day wore us both out. Ali was in bed by 10:30 and I was snoozing about an hour later.
After a buffet breakfast that was challenging even for someone with an appetite as healthy as mine (three vegetable shooters managed to kick me along) Saturday morning was spent wandering around the shops and sipping coffee down by the harbour.
All up, it was a great breakaway and a much needed chance for us to get ready for the second cycle of chemo which starts tomorrow (Monday).
NEXT POST - After we've had a chance to talk to the oncologist and Ali's had her second dose of chemotherapy, I'll put up another post tomorrow night. Stay tuned.
PS - for those of you who are responsible and wondering what happened to the kids, did we bring them and tie them up in the cupboard or leave them alone at home? Well my parents looked after them so they were safe and in good hands
We arrived around lunchtime and Ali went straight to the Westin where we were staying, while I dropped into the office to finish off some work. After Ali had a bite to eat and a snooze, we caught up later in the afternoon for high tea. Alison being Alison, this meant starting off with some Moet of course. More food, more champagne and some delicious tea (apple & amaretto for me and a white tea for Ali) and we had to retire to our room overlooking Martin Pl.
When we got to the room, we found a bottle of fantastic French champagne, the name of which I have unfortunately forgotten, and a basket of exotic chocolates (even the basket was made of chocolate). With a full glass and handful of chocky delights, Ali soaked herself in the bath for the next half hour or so until it was time to get ready for dinner.
Dinner went well and we had our fair share of chatting away and good food & wine. However, the big day wore us both out. Ali was in bed by 10:30 and I was snoozing about an hour later.
After a buffet breakfast that was challenging even for someone with an appetite as healthy as mine (three vegetable shooters managed to kick me along) Saturday morning was spent wandering around the shops and sipping coffee down by the harbour.
All up, it was a great breakaway and a much needed chance for us to get ready for the second cycle of chemo which starts tomorrow (Monday).
NEXT POST - After we've had a chance to talk to the oncologist and Ali's had her second dose of chemotherapy, I'll put up another post tomorrow night. Stay tuned.
PS - for those of you who are responsible and wondering what happened to the kids, did we bring them and tie them up in the cupboard or leave them alone at home? Well my parents looked after them so they were safe and in good hands
Sunday, August 3, 2008
Kids step up for some action
Seems the kids don't want to let Alison have all the attention.
Annelise & bronchitis
Annelise had her second ever visit to a doctor earlier this week. She had a nasty & persistent cough, slight fever and was just not feeling herself. Turns out she had a mild bout of bronchitis.
With Alison's immune system dropping due to the chemo, it was best that we hit the bronchitis with some antibiotics and try to knock it out early. Annelise is now very excited that she has some medicine to take (just like Harrison with his daily warfarin) and as it gets close to time for her next dose, she is constantly peppering us with questions about how much longer it will be.
Good news is that she seems to be all fine now.
Harrison to Emergency
Harrison decided to lift it all to another level and spent half the night in the Emergency Ward on Friday.
Earlier in the day he was feeling unwell and came home from school around lunchtime. As the afternoon wore on he had high temperatures, headache and pains in his stomach. A visit to the GP suggested it may be appendicitis and came with the recommendation that if it got any worse, take him to Emergency.
Well, it did get worse and we did end up at Emergency. Alison picked me up at work and dropped us both at The Canberra Hospital. Harrison made it through triage pretty quickly and soon found himself in a bed in the paediatric section of the Emergency Ward. (One of the small bonuses of being on warfarin with an artificial valve is that they push you through to doctors pretty quickly.)
At the start there were tears because of the pain in his stomach. After a couple of hours, this seemed to settle and his attention then turned to worrying about having to stay in the hospital overnight. Advice from the doctors and nurses for most of the night was that it was very likely he would have to stay in at least for observation until the next morning.
The big concern was whether he would need surgery. Being on warfarin (which stops blood from clotting) means that surgery can get messy and be quite dangerous if it is unplanned. Luckily, as the night wore on, it seemed the pain had gone away and there were no clinical or pathological signs to indicate he would need surgery.
Eventually, at around 11:00pm we were given the all clear by the paediatrician on duty to head home.
Harrison's still a bit on the edge and is riding the Panadol wave to keep his temperatures down but we can definitely see improvement in the way he is feeling now.
At least we now seem to be heading in the right direction with the kids. I'll do an update on Alison probably later tonight.
Annelise & bronchitis
Annelise had her second ever visit to a doctor earlier this week. She had a nasty & persistent cough, slight fever and was just not feeling herself. Turns out she had a mild bout of bronchitis.
With Alison's immune system dropping due to the chemo, it was best that we hit the bronchitis with some antibiotics and try to knock it out early. Annelise is now very excited that she has some medicine to take (just like Harrison with his daily warfarin) and as it gets close to time for her next dose, she is constantly peppering us with questions about how much longer it will be.
Good news is that she seems to be all fine now.
Harrison to Emergency
Harrison decided to lift it all to another level and spent half the night in the Emergency Ward on Friday.
Earlier in the day he was feeling unwell and came home from school around lunchtime. As the afternoon wore on he had high temperatures, headache and pains in his stomach. A visit to the GP suggested it may be appendicitis and came with the recommendation that if it got any worse, take him to Emergency.
Well, it did get worse and we did end up at Emergency. Alison picked me up at work and dropped us both at The Canberra Hospital. Harrison made it through triage pretty quickly and soon found himself in a bed in the paediatric section of the Emergency Ward. (One of the small bonuses of being on warfarin with an artificial valve is that they push you through to doctors pretty quickly.)
At the start there were tears because of the pain in his stomach. After a couple of hours, this seemed to settle and his attention then turned to worrying about having to stay in the hospital overnight. Advice from the doctors and nurses for most of the night was that it was very likely he would have to stay in at least for observation until the next morning.
The big concern was whether he would need surgery. Being on warfarin (which stops blood from clotting) means that surgery can get messy and be quite dangerous if it is unplanned. Luckily, as the night wore on, it seemed the pain had gone away and there were no clinical or pathological signs to indicate he would need surgery.
Eventually, at around 11:00pm we were given the all clear by the paediatrician on duty to head home.
Harrison's still a bit on the edge and is riding the Panadol wave to keep his temperatures down but we can definitely see improvement in the way he is feeling now.
At least we now seem to be heading in the right direction with the kids. I'll do an update on Alison probably later tonight.
Sunday, July 27, 2008
Some basic site stats (WARNING - NERD ALERT)
Some really cool stuff comes with blogging (cool in a VERY uncool, nerdy way I mean). Take the following for instance:
If we don't respond to your comments, please don't feel offended. It's not email and we cannot simply hit 'reply' to get back to you (the blog comments don't automatically include your email addresses).
For all of you that are not too familiar with blogging or computers (you know who you are - CP), don't forget, you can catch up or re-read old posts by clicking on the triangles under the heading "Blog Archive" to the right of these posts. The number in brackets tells you how many posts there are under the relevant date. Simply click on a heading and the blog will take you there.
Signing off, from your advertising-free blogspot (I tried to convince Ali to let me put some advertising here but it's still under negotiation, as are the MySpace and FaceBook franchises).
- People from five countries have read this blog - Australia (duh!), United Kingdom, United States, Malaysia and Spain
- In Australia we've hit Canberra, Sydney, Brisbane, Perth and Melbourne (I think only capitals are reported, sorry to you country/regional folks)
- In Malaysia we hit Kuching - I put that in because I thought the name of the city sounded pretty cool
- We've had over 100 unique visitors over the past week
- It looks like most of you have returned to check for updates as there have been over 250 visits in total
If we don't respond to your comments, please don't feel offended. It's not email and we cannot simply hit 'reply' to get back to you (the blog comments don't automatically include your email addresses).
For all of you that are not too familiar with blogging or computers (you know who you are - CP), don't forget, you can catch up or re-read old posts by clicking on the triangles under the heading "Blog Archive" to the right of these posts. The number in brackets tells you how many posts there are under the relevant date. Simply click on a heading and the blog will take you there.
Signing off, from your advertising-free blogspot (I tried to convince Ali to let me put some advertising here but it's still under negotiation, as are the MySpace and FaceBook franchises).
Chemo 1: Day 7
Things are going fairly well and life seems to be settling back into a rhythm, although I wouldn't quite call it normal at this stage.
Ali is doing quite well, most of the nausea has gone but she still has to put up with being tired and feeling drained of energy most of the time. Certainly she is looking better than she did earlier in the week and she seems to be laughing more at the crazy stuff that the kids & I get up to. I reckon she's being a bit harsh when she says she has three kids, not just the two - it's just laughter medicine that we're trying to offer.
If you're interested in what we've been up to for the past couple of days, read on...
Saturday was spent at soccer for the boys while the girls stayed home. Harry's team didn't do so well after the long school holiday break and were slow to start their game. They played much better in the second half and scored more goals than the other team but it wasn't enough to catch up and the other team ended the game with 6 goals to 4.
Annelise has been carrying a cough around for the last couple of days and missed out on netball on Saturday as it was simply too cold to send her out. Still, she was feeling well enough to go to jazz ballet later in the day so she wasn't too bad.
The big highlight of the day for the kids was a trip to the go-kart track. This was their first go at driving and they loved it. Annelise is an absolute maniac and raced like a madwoman, nearly bumping me off the track and almost smashing through the tire barriers at one stage when she forgot how to brake. Harrison's approach is a bit more analytical and he's plotting how he can approach and exit corners faster so that he can get around the track in the quickest time. He's hoping for a professional karting career later in life.
To finish off a big day, Harry & I sat up and watched the Wallabies run over the All Blacks (Ali & Annelise went to bed just after the national anthems). Not something that happens very often and apparently we were pretty noisy as they lost the lead and then regained to finish in front when the final whistle went. WALLABIES 34 - ALL BLACKS 19 !!!!
Sunday started with taking Harrison out to watch Gererd (one of his best friends) play rugby league. Harry is a huge sports fan but just loves rugby league, despite many attempts to convince him that rugby union is superior. During the game when Gererd had a break on the sideline, Harry got the chance to sit with him on the bench and watch the game. For a kid on warfarin, being so close to being on the field was a great buzz and one of the best parts of the morning. After the game, he took off with Gererd's family for the day and ended up indoor rock climbing. All up, one very tired boy came home.
Annelise had a much more sedate day, initially spending some time with Ali to start and then a couple of movies snuggled up under a blanket (it was a very cold day).
Ali took some time to head off to Koko Black to catch up with some friends in the afternoon and had a good old chat. This was with a group of mums that she first met when Harrison was born and they've managed to stay in touch over the past 7-8 years.
Well, that's about it for this long post. So long for now.
Ali is doing quite well, most of the nausea has gone but she still has to put up with being tired and feeling drained of energy most of the time. Certainly she is looking better than she did earlier in the week and she seems to be laughing more at the crazy stuff that the kids & I get up to. I reckon she's being a bit harsh when she says she has three kids, not just the two - it's just laughter medicine that we're trying to offer.
If you're interested in what we've been up to for the past couple of days, read on...
Saturday was spent at soccer for the boys while the girls stayed home. Harry's team didn't do so well after the long school holiday break and were slow to start their game. They played much better in the second half and scored more goals than the other team but it wasn't enough to catch up and the other team ended the game with 6 goals to 4.
Annelise has been carrying a cough around for the last couple of days and missed out on netball on Saturday as it was simply too cold to send her out. Still, she was feeling well enough to go to jazz ballet later in the day so she wasn't too bad.
The big highlight of the day for the kids was a trip to the go-kart track. This was their first go at driving and they loved it. Annelise is an absolute maniac and raced like a madwoman, nearly bumping me off the track and almost smashing through the tire barriers at one stage when she forgot how to brake. Harrison's approach is a bit more analytical and he's plotting how he can approach and exit corners faster so that he can get around the track in the quickest time. He's hoping for a professional karting career later in life.
To finish off a big day, Harry & I sat up and watched the Wallabies run over the All Blacks (Ali & Annelise went to bed just after the national anthems). Not something that happens very often and apparently we were pretty noisy as they lost the lead and then regained to finish in front when the final whistle went. WALLABIES 34 - ALL BLACKS 19 !!!!
Sunday started with taking Harrison out to watch Gererd (one of his best friends) play rugby league. Harry is a huge sports fan but just loves rugby league, despite many attempts to convince him that rugby union is superior. During the game when Gererd had a break on the sideline, Harry got the chance to sit with him on the bench and watch the game. For a kid on warfarin, being so close to being on the field was a great buzz and one of the best parts of the morning. After the game, he took off with Gererd's family for the day and ended up indoor rock climbing. All up, one very tired boy came home.
Annelise had a much more sedate day, initially spending some time with Ali to start and then a couple of movies snuggled up under a blanket (it was a very cold day).
Ali took some time to head off to Koko Black to catch up with some friends in the afternoon and had a good old chat. This was with a group of mums that she first met when Harrison was born and they've managed to stay in touch over the past 7-8 years.
Well, that's about it for this long post. So long for now.
Thursday, July 24, 2008
Some pics of the kids
Hi there
Because we're getting a lot of people coming through and looking at the blog here, including many people that we haven't caught up with for quite a while, I thought some of you may like to see a few pics of the kids.
Here's a couple I had handy but as time goes by, I'm sure I'll be able to track down a few more to post.
Harrison -
Annelise -
Take care all.
Because we're getting a lot of people coming through and looking at the blog here, including many people that we haven't caught up with for quite a while, I thought some of you may like to see a few pics of the kids.
Here's a couple I had handy but as time goes by, I'm sure I'll be able to track down a few more to post.
Harrison -
Annelise -
Take care all.
Wednesday, July 23, 2008
Chemo 1: Day 2
Just a brief update to fill you all in. So far the reaction to the chemo is pretty close to as good as we could hope for.
Ali says it feels a bit like morning sickness (or like a hangover for the blokes and those who haven't had the pleasure of morning sickness). She is getting tired fairly quickly and by the time night comes, very much looks forwards to getting into bed for a big snooze.
Last night was one of the best night's sleep she's had for a while so that was good.
That's it for now, thanks.
Ali says it feels a bit like morning sickness (or like a hangover for the blokes and those who haven't had the pleasure of morning sickness). She is getting tired fairly quickly and by the time night comes, very much looks forwards to getting into bed for a big snooze.
Last night was one of the best night's sleep she's had for a while so that was good.
That's it for now, thanks.
Monday, July 21, 2008
Chemo 1: Day 0
Alison had her first session of chemo today and here she is with the canula in her arm. The whole deal went from 10:00am this morning through to 2:30pm. The people at the Zita Mary were very good and made the whole thing go as well as it can.
So far (five hours after it finished) it's only making her feel a bit drowsy, a bit off colour and giving her a headache starting at her sinus.
We have a bag full of drugs to help treat her if she does start to feel sick, as well as some more serious stuff that needs to be injected. (We have a mobile number to call a professional for this 24/7. Once again, they will not let me use the needles!)
Kids are back at school again so there'll be a bit more peace and quiet around the house, at least during the daytime. This should be good for Ali as it is likely that she'll just want to rest up and snooze for the next few days.
I'll post another update later in the week.
Friday, July 18, 2008
Details on the chemotherapy
I thought that some of you may be interested in the more technical details of Ali's treatment - but then again many of you may not.
I know I didn't know much at all about chemotherapy right up until last week. I still don't know much but I know a lot more than I did then. It seemed to be one of those things that would be interesting to learn more about if I had the time or could find the right person to ask. Anyway, here goes my version of how it all fits together.
How it works
Chemotherapy is considered a body-wide (systemic) treatment, it travels through the whole body. In Ali's case, this means the chemo drugs will work on the cancer in the breast and the liver.
The chemo targets cells that rapidly divide, such as cancer cells. Part of the problem here is that there are three other main areas in our bodies where there are rapidly dividing cells. The chemo can damage or kill cells in each of these areas resulting in side effects.
Blood
This is where the immuno-deficiencies may come into play. White blood cells have a life span of 13-20 days (red cells can go up to 120 days). By switching off production through chemo, the body can experience low counts of white blood cells which reduces our ability to fight infection. Any signs of infection will get us a fast ticket through the emergency room.
Hair
For Ali, her hair will fall out. I mentioned in an earlier post that she's looking at wigs already. She reckons they only cost about 2-3 hair cuts and argues that I'm getting a good deal as the wig should last much longer than that. She also tells me that she tried a blonde one on but it just didn't suit her complexion (there goes that idea!).
The hair should grow back once treatment stops.
Gastrointestinal tract
This can play games all through from the mouth right down to the other end. Rather than dig into the details on this, if you're interested, it's probably best you look this up yourself.
The Drugs
The two operative drugs that will be prescribed to Alison are:
Duxorubicin
This drug works to stop the process of duplication through affecting the DNA. We're told that the liquid that is injected is red in colour so it will be quite interesting to see. Also, I read somewhere that it costs nearly $1.1m per kg to make (not sure how true or recent this bit is).
See below for the chemical structure (just a little something I threw together).
Cyclophosphamide
This one scared me at first, I thought the doctor and nurse both said psychophosphamide. I didn't think Ali needed any 'psycho' drugs and in my mind there where all sorts of images of Ali on the rampage. Luckily, this is not the case and I'm OK with them using cyclophosphamide.
This drug works to slow the growth of the cancer and interestingly, is carcinogenic itself. It is manually injected rather than relying on a gravity fed drip feed or automated pump. The reason for this is that if the canula slips out of the vein, the drug can cause necrosis of the surrounding tissue (the nurse we were speaking to assured us that he had seen this only twice in well over 20 years of experience).
See below for the chemical structure.
The Process
Ali will turn up in the morning and been seen by her medical oncologist who will check her general health and the blood test results (most likely taken the Friday before), with a particular eye on white blood cell count. If all's good, the chemo proceeds.
This will begin by the nurse inserting a canula into her arm which will be used for administering all the drugs. First off the rank will be anti-nausea drugs. Two types of anti-nausea are provided through the drip feed. I'm not so sure on which ones are used but I think it is Ondansetron and Palonosetron. These work in various ways to trick the mind and body into believing that the chemo drugs are not harmful. This part takes about 30 min.
Next, the chemo drugs above will be administered. These will take probably another hour and a half to work through. So all up, Ali should be at the clinic for probably three hours.
When released, Ali will be sent home with a small cocktail kit of pills to help manage any further headaches or nausea.
It was interesting to hear that they use different types of anti-nausea drugs after 1-2 days as it will be different reactions causing the nausea once this period has passed.
Post treatment
Ali is most likely to be feeling nauseas and tired during that first week. Her white cell blood counts will probably be low during the latter part of the second week to the middle of the third week, and thus be most susceptible to infections during that stage.
Hair will probably go close to the time when she is due to go back for her second treatment.
After three weeks, we start all over again. It does sound like we're in for the full six-cycle treatment.
Hopefully this has been interesting, educational and useful to you all. At the very least, it should give you some idea of what will happen with the chemo and a very basic, but hopefully correct, understanding of what goes on.
How it all actually affects Alison, given that every person has their own tolerances and different reactions, is yet to be seen.
I know I didn't know much at all about chemotherapy right up until last week. I still don't know much but I know a lot more than I did then. It seemed to be one of those things that would be interesting to learn more about if I had the time or could find the right person to ask. Anyway, here goes my version of how it all fits together.
How it works
Chemotherapy is considered a body-wide (systemic) treatment, it travels through the whole body. In Ali's case, this means the chemo drugs will work on the cancer in the breast and the liver.
The chemo targets cells that rapidly divide, such as cancer cells. Part of the problem here is that there are three other main areas in our bodies where there are rapidly dividing cells. The chemo can damage or kill cells in each of these areas resulting in side effects.
Blood
This is where the immuno-deficiencies may come into play. White blood cells have a life span of 13-20 days (red cells can go up to 120 days). By switching off production through chemo, the body can experience low counts of white blood cells which reduces our ability to fight infection. Any signs of infection will get us a fast ticket through the emergency room.
Hair
For Ali, her hair will fall out. I mentioned in an earlier post that she's looking at wigs already. She reckons they only cost about 2-3 hair cuts and argues that I'm getting a good deal as the wig should last much longer than that. She also tells me that she tried a blonde one on but it just didn't suit her complexion (there goes that idea!).
The hair should grow back once treatment stops.
Gastrointestinal tract
This can play games all through from the mouth right down to the other end. Rather than dig into the details on this, if you're interested, it's probably best you look this up yourself.
The Drugs
The two operative drugs that will be prescribed to Alison are:
- Doxorubicin
- Cyclophosphamide
Duxorubicin
This drug works to stop the process of duplication through affecting the DNA. We're told that the liquid that is injected is red in colour so it will be quite interesting to see. Also, I read somewhere that it costs nearly $1.1m per kg to make (not sure how true or recent this bit is).
See below for the chemical structure (just a little something I threw together).
Cyclophosphamide
This one scared me at first, I thought the doctor and nurse both said psychophosphamide. I didn't think Ali needed any 'psycho' drugs and in my mind there where all sorts of images of Ali on the rampage. Luckily, this is not the case and I'm OK with them using cyclophosphamide.
This drug works to slow the growth of the cancer and interestingly, is carcinogenic itself. It is manually injected rather than relying on a gravity fed drip feed or automated pump. The reason for this is that if the canula slips out of the vein, the drug can cause necrosis of the surrounding tissue (the nurse we were speaking to assured us that he had seen this only twice in well over 20 years of experience).
See below for the chemical structure.
The Process
Ali will turn up in the morning and been seen by her medical oncologist who will check her general health and the blood test results (most likely taken the Friday before), with a particular eye on white blood cell count. If all's good, the chemo proceeds.
This will begin by the nurse inserting a canula into her arm which will be used for administering all the drugs. First off the rank will be anti-nausea drugs. Two types of anti-nausea are provided through the drip feed. I'm not so sure on which ones are used but I think it is Ondansetron and Palonosetron. These work in various ways to trick the mind and body into believing that the chemo drugs are not harmful. This part takes about 30 min.
Next, the chemo drugs above will be administered. These will take probably another hour and a half to work through. So all up, Ali should be at the clinic for probably three hours.
When released, Ali will be sent home with a small cocktail kit of pills to help manage any further headaches or nausea.
It was interesting to hear that they use different types of anti-nausea drugs after 1-2 days as it will be different reactions causing the nausea once this period has passed.
Post treatment
Ali is most likely to be feeling nauseas and tired during that first week. Her white cell blood counts will probably be low during the latter part of the second week to the middle of the third week, and thus be most susceptible to infections during that stage.
Hair will probably go close to the time when she is due to go back for her second treatment.
After three weeks, we start all over again. It does sound like we're in for the full six-cycle treatment.
Hopefully this has been interesting, educational and useful to you all. At the very least, it should give you some idea of what will happen with the chemo and a very basic, but hopefully correct, understanding of what goes on.
How it all actually affects Alison, given that every person has their own tolerances and different reactions, is yet to be seen.
Some photos
Aha! At last I found a photo.
Ali is very sly and usually hides whenever a camera is around or if I do manage to catch her, she's got her eyes closed or a nasty scowl on her face (if you've ever been on the end of one of Ali's scowls, you'll understand why I won't be posting any of those shots).
She has promised that she'll smile for some new pics before the hair goes so keep an eye out.
In fact, while I'm at it, here is another of her with the kids, busy at one of her favourite activities, hehe. (She'll probably tear a limb off me for this but I don't think she knows how to edit the posts)
Thursday, July 17, 2008
Induction session at the oncology treatment centre
We had our induction at the Zita Mary today. That is the oncology treatment centre at Calvary Hospital. It was all pretty uneventful really. The reading materials that we had been given earlier, combined with the consultation with the medical oncologist on Wednesday, had already told us pretty much everything we learnt today.
Still, it was good to see the place and meet some of the people that will be there. The staff were reassuring and stressed that chemotherapy isn't always as bad as the stories that go around. In fact, they said that even over the past five years there have been some significant advancements in management of the side effects and the drugs that are used. Most of the side effects can be treated, so long as we tell them what's going on. Everyone's response is different.
The other thing that happened today was we got the results from Ali's bone scan. It looks to be all clear although there was a small spot of interest in her vertebrae but the report stated it was remote that this could be a metastasis. It's more likely minor damage caused by earlier scoliosis. We'll take the scans to show the medical oncologist (whose name also happens to be Alison) on Monday just in case she wants to look at them.
For those that heard about the, ahem...let's call them frank discussions, that I had been having with our health insurer, they came through and confirmed that they would have covered costs for the mastectomy and reconstruction if we had gone through with it. It seemed that when pushed, they were prepared to accept that the breast reconstruction was not 'cosmetic' and that the fact we increased the level of our cover in April this year was an independent decision, not one based on some secret knowledge of a prior condition.
Some lessons we've learned from this:
Anyway, that's about it for today. I think Ali must be feeling OK as she's starting to nag at me for writing such long posts. The next big step will be on Monday with the first chemo treatment.
Bye for now and stay posted for more as we go.
Comments
Just a couple of quick things before I go... thanks for all the comments. Ali enjoys reading them all.
If anyone feels they are having problems with posting because their comments don't immediately show up in the blog, please be aware that all comments are moderated (by me). I've set it up this way because this is an open blog and you never know who or what may be posted.
The plan is that I'll only touch stuff that is clearly out of context or inappropriate, or where someone is posting duplicate comments for no apparent reason.
Also, if you want to leave a comment on a specific post, then simply scroll to the bottom of that post (not to the bottom of the page) and click on the small 'comments' hyperlink.
Still, it was good to see the place and meet some of the people that will be there. The staff were reassuring and stressed that chemotherapy isn't always as bad as the stories that go around. In fact, they said that even over the past five years there have been some significant advancements in management of the side effects and the drugs that are used. Most of the side effects can be treated, so long as we tell them what's going on. Everyone's response is different.
The other thing that happened today was we got the results from Ali's bone scan. It looks to be all clear although there was a small spot of interest in her vertebrae but the report stated it was remote that this could be a metastasis. It's more likely minor damage caused by earlier scoliosis. We'll take the scans to show the medical oncologist (whose name also happens to be Alison) on Monday just in case she wants to look at them.
For those that heard about the, ahem...let's call them frank discussions, that I had been having with our health insurer, they came through and confirmed that they would have covered costs for the mastectomy and reconstruction if we had gone through with it. It seemed that when pushed, they were prepared to accept that the breast reconstruction was not 'cosmetic' and that the fact we increased the level of our cover in April this year was an independent decision, not one based on some secret knowledge of a prior condition.
Some lessons we've learned from this:
- if you think you are right, be prepared to push back
- if you are not sure, find out somehow but don't just rely on the insurers
- where you have something serious to discuss and possibly contentious, talk to real live people, not mystery voices on the telephone hotlines (it's much easier to reach over the counter and grab someone in person)
Anyway, that's about it for today. I think Ali must be feeling OK as she's starting to nag at me for writing such long posts. The next big step will be on Monday with the first chemo treatment.
Bye for now and stay posted for more as we go.
Comments
Just a couple of quick things before I go... thanks for all the comments. Ali enjoys reading them all.
If anyone feels they are having problems with posting because their comments don't immediately show up in the blog, please be aware that all comments are moderated (by me). I've set it up this way because this is an open blog and you never know who or what may be posted.
The plan is that I'll only touch stuff that is clearly out of context or inappropriate, or where someone is posting duplicate comments for no apparent reason.
Also, if you want to leave a comment on a specific post, then simply scroll to the bottom of that post (not to the bottom of the page) and click on the small 'comments' hyperlink.
Wednesday, July 16, 2008
Meeting with the medical oncologist
Hi All
As we said earlier, we had the meeting with the medical oncologist this morning.
How did we go? Well, overall the news wasn't good.
The short version is that the doctors cannot cure the cancer, they can only treat it and try to slow down its progress. The long version follows...
The situation
For a breast cancer to metastasize to the liver this quickly is very uncommon. The focus is now on treating the cancer in her liver as the priority. Alison has several masses in her liver and the doctor showed these to us on the CT scan today. The size and location of the masses mean that surgery is not a viable option.
Another problem is that it is unlikely that the liver is the only place with cancer cells. At this stage there have been no signs of cancer elsewhere but it is likely that there are microscopic cells scattered in other parts of her body. It is most likely to show up in bones and lungs, and somewhat less likely in the brain. Ali had a bone scan this afternoon so we should know by some time tomorrow whether there is any cancer in her bones.
We are however, lucky that we've had diligent doctors. As it is so unlikely for breast cancers to metastasize to the liver, many doctors wouldn't notice or be looking there for any signs of further cancer. That we have caught it now rather than later is a small positive factor in our favour.
Next steps
Ali will start her chemotherapy at Calvary Hospital next Monday. For those who don't know where this is, it's only about a five minute drive from our house so, chalk another one up for small positives.
We have an appointment with the treatment centre tomorrow for an induction/learning session where they will tell us more about the treatment and more importantly, how it will affect Ali in the coming months.
What we do know from talking to the doctor this morning:
After the treatment, the oncologist will consider whether hormone treatment is appropriate and either administer or not at that time. The cancer cells have shown up as positive to oestrogen and progesterone so there is a chance they will respond well to hormone treatment. The reason we cannot do this instead of the chemo, is that hormone treatment would take a couple of months before showing signs of whether it was working or not and the doctor did not want to waste that much time. We need to hit it with something a lot harder.
Throughout the treatment, the doctor will monitor Ali and she will have blood tests done before each cycle (this may time well with Harrison's blood test - the two of them are going for a joint pathology session tomorrow, Harrison said that mum can go first 'cause he thinks she's a bit of a scaredy cat).
At the end of the treatment, they will need to continue monitoring Ali. When the cancer shows signs of spreading/growing, more chemo will be needed.
The BIG question
How long? We don't know.
Excluding the cancer, Ali is strong and healthy. The doctor says she could have years ahead of her. Certainly, we're looking to set some new records here. I think she's one in a billion so that must put the odds in her favour at least a little.
It's all going to depend on how effective the chemo is and how aggressive the cancer is going to be. And we won't know the answer to that for a couple of months yet.
Keep your fingers crossed.
As we said earlier, we had the meeting with the medical oncologist this morning.
How did we go? Well, overall the news wasn't good.
The short version is that the doctors cannot cure the cancer, they can only treat it and try to slow down its progress. The long version follows...
The situation
For a breast cancer to metastasize to the liver this quickly is very uncommon. The focus is now on treating the cancer in her liver as the priority. Alison has several masses in her liver and the doctor showed these to us on the CT scan today. The size and location of the masses mean that surgery is not a viable option.
Another problem is that it is unlikely that the liver is the only place with cancer cells. At this stage there have been no signs of cancer elsewhere but it is likely that there are microscopic cells scattered in other parts of her body. It is most likely to show up in bones and lungs, and somewhat less likely in the brain. Ali had a bone scan this afternoon so we should know by some time tomorrow whether there is any cancer in her bones.
We are however, lucky that we've had diligent doctors. As it is so unlikely for breast cancers to metastasize to the liver, many doctors wouldn't notice or be looking there for any signs of further cancer. That we have caught it now rather than later is a small positive factor in our favour.
Next steps
Ali will start her chemotherapy at Calvary Hospital next Monday. For those who don't know where this is, it's only about a five minute drive from our house so, chalk another one up for small positives.
We have an appointment with the treatment centre tomorrow for an induction/learning session where they will tell us more about the treatment and more importantly, how it will affect Ali in the coming months.
What we do know from talking to the doctor this morning:
- treatments are administered intravenously
- they will take several hours for each treatment
- Ali is likely to feel nauseous for a few days afterwards, although this can be managed by the oncologist
- Ali may feel nauseous for longer
- Ali is likely to be tired
- the treatment will cause her hair to fall out (she's been looking at wigs earlier today)
After the treatment, the oncologist will consider whether hormone treatment is appropriate and either administer or not at that time. The cancer cells have shown up as positive to oestrogen and progesterone so there is a chance they will respond well to hormone treatment. The reason we cannot do this instead of the chemo, is that hormone treatment would take a couple of months before showing signs of whether it was working or not and the doctor did not want to waste that much time. We need to hit it with something a lot harder.
Throughout the treatment, the doctor will monitor Ali and she will have blood tests done before each cycle (this may time well with Harrison's blood test - the two of them are going for a joint pathology session tomorrow, Harrison said that mum can go first 'cause he thinks she's a bit of a scaredy cat).
At the end of the treatment, they will need to continue monitoring Ali. When the cancer shows signs of spreading/growing, more chemo will be needed.
The BIG question
How long? We don't know.
Excluding the cancer, Ali is strong and healthy. The doctor says she could have years ahead of her. Certainly, we're looking to set some new records here. I think she's one in a billion so that must put the odds in her favour at least a little.
It's all going to depend on how effective the chemo is and how aggressive the cancer is going to be. And we won't know the answer to that for a couple of months yet.
Keep your fingers crossed.
Monday, July 14, 2008
Ali's email
Hey all - it's me again. As promised, here is the email from Ali.
Hello there
So the plan from here is to put the surgery on hold or maybe cancelled altogether and just get started on the chemo ASAP. I have an appointment with the newest doctor to join my team, the oncologist, on Wednesday so will know more then, her name is Alison so I figure that’s a good sign. I also have a bone scan planned for Wed which will hopefully be clear.
Start of the Blog
Hi All - you've probably found this place because of Alison's email. If not, then I intend to post the text from that email sometime soon so those of you that have joined in late or missed out can catch up on this history of this journey.
If you are viewing this blog, then it is probably because you know and care about Alison, and that's a good thing because she is definitely worth it. We've got a long and difficult road ahead of us at the moment and we're happy to have your help and thoughts along the way. However, to save us from repeating ourselves 30 times a day with updates etc., we thought that a blog would be a good way to keep everyone up to date on the latest news.
Now I know that the blog is only as good as the information that goes into it so I will try to keep it all up to date. I really will.
But...I make no promises. So, you have been warned.
Also a warning to all little kiddies that may be reading. I have no intention of holding back on this blog so if I'm having a bad day, you may well hear about it in full 7.1 Dolby, colour and 3D. Although I'm sure that those of you who know me realise that this will be done in context, be fully justified and have appropriate impact.
So - where are we at????
We know:
What next???
We have an appointment with the oncologist on Wednesday morning to find out more. That evening is likely to be the date of the next update because really, nothing much is going to happen between now and then.
What can you do???
Hard to say really. I don't want to sound lame but there is not much to do at this point. Don't worry, we will be pushing doctors etc. to their limit (insurance company already dislikes me, doctors' surgeries quiver when they see my number come up on their phones and I'm on first name basis with the hospital so believe me, we will push hard).
What's good - normal life stuff, talking about the kids, what's going on, yes you're interested in how things are but life in general still has to happen
What's not so good - "hang in there", "stay strong". If you plan on calling just for the sake of calling, then please, send an email (I realise this sounds harsh, but that's the way it is).
I think that's enough for this first post. I warn you all again, this blog is likely to be indulgent, personal, sometimes offensive and totally for our own interests.
You stay tuned at your own discretion.
Love to all and thank you
If you are viewing this blog, then it is probably because you know and care about Alison, and that's a good thing because she is definitely worth it. We've got a long and difficult road ahead of us at the moment and we're happy to have your help and thoughts along the way. However, to save us from repeating ourselves 30 times a day with updates etc., we thought that a blog would be a good way to keep everyone up to date on the latest news.
Now I know that the blog is only as good as the information that goes into it so I will try to keep it all up to date. I really will.
But...I make no promises. So, you have been warned.
Also a warning to all little kiddies that may be reading. I have no intention of holding back on this blog so if I'm having a bad day, you may well hear about it in full 7.1 Dolby, colour and 3D. Although I'm sure that those of you who know me realise that this will be done in context, be fully justified and have appropriate impact.
So - where are we at????
We know:
- Ali has been diagnosed with cancer in her left breast
- this is a high grade (III) cancer
- the cancer has appeared to have metastasized ('Google' it if you don't know) to her liver
- this is considered a bad thing
What next???
We have an appointment with the oncologist on Wednesday morning to find out more. That evening is likely to be the date of the next update because really, nothing much is going to happen between now and then.
What can you do???
Hard to say really. I don't want to sound lame but there is not much to do at this point. Don't worry, we will be pushing doctors etc. to their limit (insurance company already dislikes me, doctors' surgeries quiver when they see my number come up on their phones and I'm on first name basis with the hospital so believe me, we will push hard).
What's good - normal life stuff, talking about the kids, what's going on, yes you're interested in how things are but life in general still has to happen
What's not so good - "hang in there", "stay strong". If you plan on calling just for the sake of calling, then please, send an email (I realise this sounds harsh, but that's the way it is).
I think that's enough for this first post. I warn you all again, this blog is likely to be indulgent, personal, sometimes offensive and totally for our own interests.
You stay tuned at your own discretion.
Love to all and thank you
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