This is what I figured remission would be like. No symptoms of my disease at all. No back-aches, no night sweats, no feeling unwell.
If I felt like this before going to Germany I probably would not have gone. However I have a PET scan that says I'm not in remission.
Just some sort of low in my lymphomas activity.
I've been back on full duties at work. It's been over a year since I last picked up my tools and worked a full-on day. Last week I was flat out doing all sorts of engineering work without the slightest bit of fatigue. ..and yet I'm just over two weeks away from having salvage chemo. It just seems so bizarre to be facing such an intense period of treatment when I feel this good.
My dry, choking cough is now a permanent feature and I cannot talk without punctuating every sentence with a cough or two. It still drives me nuts!
My stem cells arrived back in NZ late on Friday night. The staff at the cryopreservation lab at Wellington hospital would not have been happy as the shipment finally arrived at 8:40pm according to the delivery report. They will be tested to see if they have degraded in any way. I have been waiting for the stem cells to arrive back home before posting here that I discovered that the documentation from Germany had been filled out retrospectively and therefore was very suspect. I informed the team handling my transplant as soon as I saw the falsified documents. They have said they will dispose of my stem cells if there is any doubt as to their viability. (Why is it that at almost every point in my treatment there have been these sorts of dramas!! ??)
I have a busy few days at work next week before I take a break for Christmas. Kurt left for his holidays on Friday last week and will take over running the workshop until I return at the end of my treatment. I might be OK to do some light duties, I may not, Who knows. Same goes for my motorsport.. I will miss the opening two rounds of the 2009 Duncan McKenzie series, Port rd and Mount Victoria hillclimb.
I have dreams of jumping in my car and doing one single run at each event, possibly before collapsing in fatigued heap. I'd need to have safe blood counts before I could even entertain the thought of entering.. I probably need to face facts.. I won't be racing for 3-4 months, But I never say never!
I'll next post once I'm in hospital from Jan 9th. I'll be there for 4-5 days.
Meanwhile..I hope everyone has a great Christmas and a relaxing holiday break!
Sunday, December 21, 2008
Wednesday, December 10, 2008
The plan...
I had a meeting with Dr D'Souza this morning. It started in the middle of the car park, where we had bumped into each other, continued through the underground car-park into the lifts and down the corridors. It was he who instigated the conversation, most Doctors don't like to talk to patients outside of their allotted time-slot.. That little fifteen minute time-slice that you often have to wait two to six weeks to obtain. So I didn't feel bad for talking out of class.
Once seated in one of the rooms he laid out the treatment plan.
Jan 8th I go into hospital and receive one cycle of IFE salvage chemotherapy. The salvage chemo will reduce the cancer burden in preparation for the high dose chemo with stem cell rescue that will follow about 3-4 weeks later. It will also increase the chances of getting a good stem cell harvest. We start mobilisation shortly after the chemo. Mobilisation refers to stimulating the growth of stem cells in preparation for harvesting. This involves being injected with large doses of GCSF growth factor. Basically the same growth factor I was given to stimulate my white blood counts in Germany but in much higher doses.
I was surprised to find out that I won't be stuck in a hospital bed for the entire time. There are several short stays, but most of the time I can stay at home and be driven (or drive myself, but don't tell them I said that!)into the hospital every day for tests etc. The exact dates have yet to be confirmed, I'll be getting an email in a few days with the full treatment schedule.
I've booked the couriers to pick up my stem cells from Germany. They should arrive back mid next week. I've conveyed to Dr D'Souza my doubts over the viability of the old stem cells and he said that they will be tested on their arrival and if they are not up to spec they will be disposed of. Hopefully we get a really good harvest this time and we won't need to use them anyway.
Health-wise I'm still in good chape. I was having the occasional single bottle of beer after work on these warm summer evenings but I started to get a slight back-ache so have now decided to do without. My cough seems to be worse, it drives me nuts. No night sweats in ages.
Once seated in one of the rooms he laid out the treatment plan.
Jan 8th I go into hospital and receive one cycle of IFE salvage chemotherapy. The salvage chemo will reduce the cancer burden in preparation for the high dose chemo with stem cell rescue that will follow about 3-4 weeks later. It will also increase the chances of getting a good stem cell harvest. We start mobilisation shortly after the chemo. Mobilisation refers to stimulating the growth of stem cells in preparation for harvesting. This involves being injected with large doses of GCSF growth factor. Basically the same growth factor I was given to stimulate my white blood counts in Germany but in much higher doses.
I was surprised to find out that I won't be stuck in a hospital bed for the entire time. There are several short stays, but most of the time I can stay at home and be driven (or drive myself, but don't tell them I said that!)into the hospital every day for tests etc. The exact dates have yet to be confirmed, I'll be getting an email in a few days with the full treatment schedule.
I've booked the couriers to pick up my stem cells from Germany. They should arrive back mid next week. I've conveyed to Dr D'Souza my doubts over the viability of the old stem cells and he said that they will be tested on their arrival and if they are not up to spec they will be disposed of. Hopefully we get a really good harvest this time and we won't need to use them anyway.
Health-wise I'm still in good chape. I was having the occasional single bottle of beer after work on these warm summer evenings but I started to get a slight back-ache so have now decided to do without. My cough seems to be worse, it drives me nuts. No night sweats in ages.
Friday, December 5, 2008
A quick update
I seem to be in a holding pattern at the moment.
I've had confirmation from Dr D'Souza that we will start mobilisation of my stem cells in early January. This means I'll probably be re-harvested about two weeks after that. There was no mention of salvage chemo in his email but he did say that he would discuss the finer details at next Wednesday's appointment.
I finally managed to extract the documentation out of the Doctors at the Leonardis Klinik in Germany. They seemed to use every excuse they could find to avoid sending it. Considering they originally told me it was all ready to go when I left Germany two months ago you have to wonder what they are up to.
As soon as the cryopreservation people at Wellington Hospital let me know when they are ready to receive the stem cells, I shall organise with World Couriers to have them shipped back. I have a suspicion that the cells will turn out to be not viable once tested. We shall see...
Health-wise I'm in good shape. I have been walking with Sarah most evenings and on others I either run or walk on the treadmill. Every morning I try and do as many push-ups as I can and I've gone from struggling to do just one push-up two months ago to now being able to complete twenty most mornings.
I no longer suffer from night sweats or back aches and the only obvious sign of my disease is the constant cough. I remember back in December 2006 when my stem cells were being mobilised for the first time, I had exactly the same cough. My breathing was a lot worse back at that point and my health was worse too. I think it's a real blessing to be feeling this good two years down the track. If I had not undergone any of the treatments I've had, despite the fact that they have all ultimately failed, I'm fairly sure I would be dead by now. So at least they have kept the disease relatively at bay, if not actually made me better off than I was back then.
I'll post again on Wednesday after seeing the Doctor.
I've had confirmation from Dr D'Souza that we will start mobilisation of my stem cells in early January. This means I'll probably be re-harvested about two weeks after that. There was no mention of salvage chemo in his email but he did say that he would discuss the finer details at next Wednesday's appointment.
I finally managed to extract the documentation out of the Doctors at the Leonardis Klinik in Germany. They seemed to use every excuse they could find to avoid sending it. Considering they originally told me it was all ready to go when I left Germany two months ago you have to wonder what they are up to.
As soon as the cryopreservation people at Wellington Hospital let me know when they are ready to receive the stem cells, I shall organise with World Couriers to have them shipped back. I have a suspicion that the cells will turn out to be not viable once tested. We shall see...
Health-wise I'm in good shape. I have been walking with Sarah most evenings and on others I either run or walk on the treadmill. Every morning I try and do as many push-ups as I can and I've gone from struggling to do just one push-up two months ago to now being able to complete twenty most mornings.
I no longer suffer from night sweats or back aches and the only obvious sign of my disease is the constant cough. I remember back in December 2006 when my stem cells were being mobilised for the first time, I had exactly the same cough. My breathing was a lot worse back at that point and my health was worse too. I think it's a real blessing to be feeling this good two years down the track. If I had not undergone any of the treatments I've had, despite the fact that they have all ultimately failed, I'm fairly sure I would be dead by now. So at least they have kept the disease relatively at bay, if not actually made me better off than I was back then.
I'll post again on Wednesday after seeing the Doctor.
Sunday, November 30, 2008
Shelly Bay Sealed Sprint.
Wow!! What a day!
In my last post I spoke about my goal of breaking the record for the annual Shelly Bay sealed sprint. Joe McAndrew set it back in 1996 in his Pro_drive Subaru Impreza at a time when he was the NZ rally champion.
Today I broke his record on all three of my timed runs, culminating in a 1:11.92 final run. Exactly the time I said I'd like to achieve in my last blog post! I'm absolutely over the moon with the result.
Over the last two weeks I've made several changes to my car, mostly around the suspension. When I first went out this morning for my practice run the car was very skittish and was jumping around at speed (180kph) on bumps. I almost felt like taking the car back to the workshop and un-doing all the changes. Luckily I didn't. Deciding instead to try lowering the tyre pressures and softening the rear shocks.
The changes worked and the car has never felt so positive when cornering. Where previously the car would 'push' towards the outside of a corner at speed, it now corners like a train on rails.
Only the tyres are dictating my position on the road and they seem to slip equally from both front and rear, making the car very predictable and easier to drive. Better tyres are now on my wish list.
The car just got a new set of race tyres but they don't seem to work as well some of the other brands I've seen. Oh well they can't be too bad if I'm breaking records!
I took a passenger on my last two runs, Sarah was first out and I think she got a reminder of why she hasn't been in the 'silly seat' for over a year. She seemed to be most terrified as I approached the Light-House hairpin turn at 180kph and didn't appear to be in any hurry to stop. The huge Brembo brakes fitted to the Evo are capable of stopping the car in an insanely short distance. Next out was family friend Lara, who got the privilege of being along for the record setting run. She can now claim to have been driven over the road between Scorching and Shelly Bays faster than than any person on the planet.
I've posted some new video footage on You-tube. It can be accessed via the video-bar on the right side of this page.
Meanwhile I'm going to have another beer and celebrate!
..Ron
In my last post I spoke about my goal of breaking the record for the annual Shelly Bay sealed sprint. Joe McAndrew set it back in 1996 in his Pro_drive Subaru Impreza at a time when he was the NZ rally champion.
Today I broke his record on all three of my timed runs, culminating in a 1:11.92 final run. Exactly the time I said I'd like to achieve in my last blog post! I'm absolutely over the moon with the result.
Over the last two weeks I've made several changes to my car, mostly around the suspension. When I first went out this morning for my practice run the car was very skittish and was jumping around at speed (180kph) on bumps. I almost felt like taking the car back to the workshop and un-doing all the changes. Luckily I didn't. Deciding instead to try lowering the tyre pressures and softening the rear shocks.
The changes worked and the car has never felt so positive when cornering. Where previously the car would 'push' towards the outside of a corner at speed, it now corners like a train on rails.
Only the tyres are dictating my position on the road and they seem to slip equally from both front and rear, making the car very predictable and easier to drive. Better tyres are now on my wish list.
The car just got a new set of race tyres but they don't seem to work as well some of the other brands I've seen. Oh well they can't be too bad if I'm breaking records!
I took a passenger on my last two runs, Sarah was first out and I think she got a reminder of why she hasn't been in the 'silly seat' for over a year. She seemed to be most terrified as I approached the Light-House hairpin turn at 180kph and didn't appear to be in any hurry to stop. The huge Brembo brakes fitted to the Evo are capable of stopping the car in an insanely short distance. Next out was family friend Lara, who got the privilege of being along for the record setting run. She can now claim to have been driven over the road between Scorching and Shelly Bays faster than than any person on the planet.
I've posted some new video footage on You-tube. It can be accessed via the video-bar on the right side of this page.
Meanwhile I'm going to have another beer and celebrate!
..Ron
Wednesday, November 26, 2008
Tests and another meeting with the doctor
Monday was a full-on day. It started with a 9am appointment at the Nuclear Medicine dept at Wellington Hospital. The first test was the kidney function test. This involves having a radioactive isotope injected into a line in my right arm and then having a series of scans performed.
The isotope is processed by my kidneys in the normal way and a series of blood samples are taken every hour for five hours. The samples are then analysed to make sure that the isotope levels in my blood are dropping. If my kidneys are functioning correctly the levels will decay at a predictable rate.
Next up was the Gated Heart Study. This also involved a radioactive isotope that was injected into my arm, this time my left one. I also had an injection containing Tin before hand. The isotope binds to the tin and then that in turns binds to the red cells in my blood. (Well at least that's my understanding of the process).
I'm then put on a scanning bed, a lot like a CT scanner, and pictures of my heart are taken over a period of around thirty five minutes. From these pictures it is then possible to calculate the hearts efficiency. The amount of blood drawn in against how much is pumped out. Any damage to my heart valves would become apparent, possibly ruling out further chemotherapy. I'm told my heart is still in good shape.
The next test was Lung Function. This involves sitting inside a small sealed glass cabinet and breathing into a tube. Well.. kind of.. There are various tests that you are asked to perform. Breathing all the way in until you think your lungs will burst and then pushing it out until you almost feel like your chest will implode is one of them. Another involves panting into the tube and then pushing against a restriction that suddenly occurs. A computer graphs everything as it happens and then compares it against my previous figures from when we did the 'baseline' tests back in 2005.
No further lung damage has occurred in the last year. I lost about 15% efficiency after my first hit of chemo but none since.
My lung capacity is down slightly on last time but that's to be expected from the radiation damage to my bronchial tubes. I think if I'd done the test a month ago when I could hardly breath the results would have been a lot worse. So I kind of passed the lung test too. They aren't what they used to be, but with exercise I can increase the capacity, however the efficiency may never return to what it was.
This morning I had another meeting with Dr D'Souza. I was late due to traffic and he had to be called back from a meeting. He's been seeing me outside of his usual weekly clinics. It's good to know he's very keen to keep the ball rolling on this. In contrast to previous experience I've had within the public hospital system.
There's still no clear plan yet but he has confirmed that I will be having high dose chemo with stem cell support. The timing is unknown and is based around how quickly I can get my stem cells back from Germany. I've had a devil of a time getting any sort of response out of them. Finally yesterday morning they emailed me and said that they would complete the required paperwork and forward it to me and Wgtn hospital in the next day or so.
The last time I saw Dr D'Souza I suggested that having a couple of cycles of salvage chemo would be something I'd very much agree to.
I thought that it would help reduce the involvement of the cancer until the high dose could be started and also give us an opportunity to do another stem cell harvest off the back of the last chemo cycle. This is based on the phenomena whereby there is a rebound effect on the stem cells after chemo and a greater harvest of cells can be gathered than would be the case without chemo. Also reducing the cancer load means we have less work for the high dose to do and can reduce the burden on my system at a time when I would have a severely compromised immune system.
Today Dr D'Souza suggested that another round of salvage chemo was an option and that he could harvest off the back of the last cycle. I wonder if he realises this is exactly what I talked about at our last meeting. Fingers crossed we go down that path.
The other option is straight into high dose chemo and the stem cell transplant at the first opportunity. Personally I don't think this is the best option. He has indicated that there may be an opening for treatment this side of Christmas. I'll be subtly pushing for the salvage option when we next meet.
I'm racing this weekend at Shelly Bay. I expect that it will be the last event I enter for some time as there is only one event early next year, which I'll probably miss due to treatment and after that there's one event in April then nothing until August.
I've made some tweaks to my car, Launch control and minor suspension improvement in an attempt to do better than the 1:13's of the previous two years I've entered the annual Shelly Bay sprint.
I'd like to do an 1:11 second run, smashing the record of 1:12.85 set by Joe McAndrew in 1996... we shall see :)
The isotope is processed by my kidneys in the normal way and a series of blood samples are taken every hour for five hours. The samples are then analysed to make sure that the isotope levels in my blood are dropping. If my kidneys are functioning correctly the levels will decay at a predictable rate.
Next up was the Gated Heart Study. This also involved a radioactive isotope that was injected into my arm, this time my left one. I also had an injection containing Tin before hand. The isotope binds to the tin and then that in turns binds to the red cells in my blood. (Well at least that's my understanding of the process).
I'm then put on a scanning bed, a lot like a CT scanner, and pictures of my heart are taken over a period of around thirty five minutes. From these pictures it is then possible to calculate the hearts efficiency. The amount of blood drawn in against how much is pumped out. Any damage to my heart valves would become apparent, possibly ruling out further chemotherapy. I'm told my heart is still in good shape.
The next test was Lung Function. This involves sitting inside a small sealed glass cabinet and breathing into a tube. Well.. kind of.. There are various tests that you are asked to perform. Breathing all the way in until you think your lungs will burst and then pushing it out until you almost feel like your chest will implode is one of them. Another involves panting into the tube and then pushing against a restriction that suddenly occurs. A computer graphs everything as it happens and then compares it against my previous figures from when we did the 'baseline' tests back in 2005.
No further lung damage has occurred in the last year. I lost about 15% efficiency after my first hit of chemo but none since.
My lung capacity is down slightly on last time but that's to be expected from the radiation damage to my bronchial tubes. I think if I'd done the test a month ago when I could hardly breath the results would have been a lot worse. So I kind of passed the lung test too. They aren't what they used to be, but with exercise I can increase the capacity, however the efficiency may never return to what it was.
This morning I had another meeting with Dr D'Souza. I was late due to traffic and he had to be called back from a meeting. He's been seeing me outside of his usual weekly clinics. It's good to know he's very keen to keep the ball rolling on this. In contrast to previous experience I've had within the public hospital system.
There's still no clear plan yet but he has confirmed that I will be having high dose chemo with stem cell support. The timing is unknown and is based around how quickly I can get my stem cells back from Germany. I've had a devil of a time getting any sort of response out of them. Finally yesterday morning they emailed me and said that they would complete the required paperwork and forward it to me and Wgtn hospital in the next day or so.
The last time I saw Dr D'Souza I suggested that having a couple of cycles of salvage chemo would be something I'd very much agree to.
I thought that it would help reduce the involvement of the cancer until the high dose could be started and also give us an opportunity to do another stem cell harvest off the back of the last chemo cycle. This is based on the phenomena whereby there is a rebound effect on the stem cells after chemo and a greater harvest of cells can be gathered than would be the case without chemo. Also reducing the cancer load means we have less work for the high dose to do and can reduce the burden on my system at a time when I would have a severely compromised immune system.
Today Dr D'Souza suggested that another round of salvage chemo was an option and that he could harvest off the back of the last cycle. I wonder if he realises this is exactly what I talked about at our last meeting. Fingers crossed we go down that path.
The other option is straight into high dose chemo and the stem cell transplant at the first opportunity. Personally I don't think this is the best option. He has indicated that there may be an opening for treatment this side of Christmas. I'll be subtly pushing for the salvage option when we next meet.
I'm racing this weekend at Shelly Bay. I expect that it will be the last event I enter for some time as there is only one event early next year, which I'll probably miss due to treatment and after that there's one event in April then nothing until August.
I've made some tweaks to my car, Launch control and minor suspension improvement in an attempt to do better than the 1:13's of the previous two years I've entered the annual Shelly Bay sprint.
I'd like to do an 1:11 second run, smashing the record of 1:12.85 set by Joe McAndrew in 1996... we shall see :)
Wednesday, November 19, 2008
Motorsport News...
I got this little piece of motorsport news in my email on the weekend..
***Click here*** (Read the "News" paragraph)
Not a bad result! Especially when you consider two of the events were entered when I was under-going treatment. At the Mount Victoria Hillclimb in April I had just completed radiation treatment, Had lost 15kg in weight and barely enough strength to drive the car.
***Click here*** (Read the "News" paragraph)
Not a bad result! Especially when you consider two of the events were entered when I was under-going treatment. At the Mount Victoria Hillclimb in April I had just completed radiation treatment, Had lost 15kg in weight and barely enough strength to drive the car.
Tuesday, November 18, 2008
Fitness level
Sarah and I went for a two hour bush walk on Sunday afternoon. We hiked up to the Korokoro dam from Cornish st in Petone. At no point did I feel tired or breathless.
I commented to Sarah that I was feeling the best I've felt in years. No aches or pains, no discomfort at all. When I think back to how sick I was when I first went to my GP four years ago complaining of joint pain, fatigue and the feeling I'd been hit by a bus when I awoke every morning.
It's incredible that with my Hodgkins spread so far from the days when it was just a lump on my neck, that I'm feeling in such good shape!
Last night I was so fired up that I jumped on the treadmill and ran for 3km's.
It was my breathing that gave out first, leaving me gasping for air but physically feeling like I could have gone a lot further. I'm hoping my lungs will improve the more I exercise.
As I was typing this I received a call on my mobile. It was a guy from the Nuclear medicine dept at Wgtn hospital. He asked that I come in on Monday for kidney function and gated heart study tests. Apparently it involves me being fitted with two IV lines, being injected with radioactive isotopes and about six hours of my time. Sounds like a fun day!
I commented to Sarah that I was feeling the best I've felt in years. No aches or pains, no discomfort at all. When I think back to how sick I was when I first went to my GP four years ago complaining of joint pain, fatigue and the feeling I'd been hit by a bus when I awoke every morning.
It's incredible that with my Hodgkins spread so far from the days when it was just a lump on my neck, that I'm feeling in such good shape!
Last night I was so fired up that I jumped on the treadmill and ran for 3km's.
It was my breathing that gave out first, leaving me gasping for air but physically feeling like I could have gone a lot further. I'm hoping my lungs will improve the more I exercise.
As I was typing this I received a call on my mobile. It was a guy from the Nuclear medicine dept at Wgtn hospital. He asked that I come in on Monday for kidney function and gated heart study tests. Apparently it involves me being fitted with two IV lines, being injected with radioactive isotopes and about six hours of my time. Sounds like a fun day!
Saturday, November 15, 2008
Cough Improving..
Isn't it weird.. This darned annoying dry hacking cough is getting better by the day!
It's still there, I'm coughing now as I type.. but over-all it's much improved over what it was a month ago. At that time I was having violent coughing fits that often got so bad that I vomited. Yuk!
Now it's just when I talk or if I breath in water etc when I'm drinking.. something that I seem to do far more often than I'd like, no matter how careful I am. I've been taking Seravent and I think that's made the biggest difference. I always thought that a lot of the coughing was asthma related. The cough when I talk is a result of the radiation treatment causing damage to my bronchial tubes. My biggest fear was that the cough was because of lung involvement, but if that were the case it would not be improving like it is.
I've been getting out and exercising as often as I can. I went for a bush walk last week that would normally have had me stopping every 10 minutes or so for a rest, but this time I did it without stopping, even on the steep uphill sections.
So my over-all fitness is improving in leaps and bounds. I want to start running again in the coming weeks. The idea is to be as physically fit as I can possibly be going into the next stage of treatment.
It's still there, I'm coughing now as I type.. but over-all it's much improved over what it was a month ago. At that time I was having violent coughing fits that often got so bad that I vomited. Yuk!
Now it's just when I talk or if I breath in water etc when I'm drinking.. something that I seem to do far more often than I'd like, no matter how careful I am. I've been taking Seravent and I think that's made the biggest difference. I always thought that a lot of the coughing was asthma related. The cough when I talk is a result of the radiation treatment causing damage to my bronchial tubes. My biggest fear was that the cough was because of lung involvement, but if that were the case it would not be improving like it is.
I've been getting out and exercising as often as I can. I went for a bush walk last week that would normally have had me stopping every 10 minutes or so for a rest, but this time I did it without stopping, even on the steep uphill sections.
So my over-all fitness is improving in leaps and bounds. I want to start running again in the coming weeks. The idea is to be as physically fit as I can possibly be going into the next stage of treatment.
Wednesday, November 12, 2008
What next ?
I just got back from my consultation with Dr D'Souza. There is no clear plan of attack at this stage. Basically he checked me over and we discussed treatment so far and I gave him the details of the treatment I had received in Germany.
He was very pleased to see that I was in such good shape, as he said that his greatest concern was that I would be too unhealthy to withstand further treatment.
I agreed with him and said that was why I have been pushing so hard for treatment now while I am still relatively fit.
He has scheduled another appointment in two weeks time. This gives him an opportunity to formulate a treatment plan with his colleagues and some idea of time frame. In the mean time I'm to have a raft of tests to ascertain my state of health. Blood tests, gated heart study and lung function.
There are a couple of possible treatment options, One is the high dose chemo and stem cell transplant. The other is more salvage chemo. Or possibly a mix of both. Having some form of chemo can be beneficial to stem cell harvesting in that there is a slight "rebound" effect in the bone marrow that can provide more stem cells in the harvest. Of course I may not need to re-harvest, the cells I have in Germany may be enough. Like I said it's pretty much all up in the air at this point in time.
I had one night sweat on the weekend but other than that I'm feeling really good and oddly my cough seems to be improving.
He was very pleased to see that I was in such good shape, as he said that his greatest concern was that I would be too unhealthy to withstand further treatment.
I agreed with him and said that was why I have been pushing so hard for treatment now while I am still relatively fit.
He has scheduled another appointment in two weeks time. This gives him an opportunity to formulate a treatment plan with his colleagues and some idea of time frame. In the mean time I'm to have a raft of tests to ascertain my state of health. Blood tests, gated heart study and lung function.
There are a couple of possible treatment options, One is the high dose chemo and stem cell transplant. The other is more salvage chemo. Or possibly a mix of both. Having some form of chemo can be beneficial to stem cell harvesting in that there is a slight "rebound" effect in the bone marrow that can provide more stem cells in the harvest. Of course I may not need to re-harvest, the cells I have in Germany may be enough. Like I said it's pretty much all up in the air at this point in time.
I had one night sweat on the weekend but other than that I'm feeling really good and oddly my cough seems to be improving.
Monday, November 10, 2008
An appointment with the haematologist
It certainly does pay to be pushy when it comes to getting an urgent appointment with specialists. I'd had no word last week from Wgtn hospital with regards to making an appointment to see me following my GP faxing them a referral. However today I received a reply from Alwyn D'Souza after I emailed him on Friday asking that he see me at his earliest convenience. In it he said he would have someone call me today and schedule a time to see him this Wednesday. Sure enough within minutes of his email I received a call from the hospital informing me of my 11am appointment.
In the email he also mentioned that he is still waiting for the documentation from The Leonardis Klinik with regards to the storage conditions of my stem cells. Without that paperwork they cannot be returned. What annoys me is that I was assured on several occasions by the klinik manager that it had been completed and sent. If the stem cells have to be written off and left in Germany that will mean a re-harvesting of new stem cells. I'm not sure how well Wellington hospital would take that as the cost is huge.
Health-wise I feel good, but my breathing is pretty crappy. I feel asthmatic most of the time and get breathless easily.
The cough is still there and last night saw a return of the night sweats. The sooner I get back into treatment the better. Fingers crossed that's on the agenda, Wednesdays meeting will reveal all I guess. I'll update you on what we discuss in my next post.
..Ron
In the email he also mentioned that he is still waiting for the documentation from The Leonardis Klinik with regards to the storage conditions of my stem cells. Without that paperwork they cannot be returned. What annoys me is that I was assured on several occasions by the klinik manager that it had been completed and sent. If the stem cells have to be written off and left in Germany that will mean a re-harvesting of new stem cells. I'm not sure how well Wellington hospital would take that as the cost is huge.
Health-wise I feel good, but my breathing is pretty crappy. I feel asthmatic most of the time and get breathless easily.
The cough is still there and last night saw a return of the night sweats. The sooner I get back into treatment the better. Fingers crossed that's on the agenda, Wednesdays meeting will reveal all I guess. I'll update you on what we discuss in my next post.
..Ron
Sunday, November 9, 2008
Admiral rd Hillclimb
We just got back from competing at the Admiral Rd hillclimb. What a fantastic day! The weather has been awesome. I think just about everyone that went is suffering from some degree of sunburn as a result.
The turnout was huge, over forty cars this year including NZ's top rally driver Richard Mason fresh from his win of the 2008 Targa (tarmac) Rally last weekend. As I have mentioned in an earlier post I set a new record for the event last year at 37.27 seconds for the 900-metre dash to the top of the hill. However it became evident from the first run that Richard Mason was there to have a crack at beating it. He posted a 37.7 on his first time up the hill, where as I put down a slow 38.98, taking it easy on my first run as I found my limits.
After seeing his time I decided to have a go at getting up the hill in 36 seconds. I lowered my tyre pressures for more grip and raised the turbo boost pressure for more power. Sure enough I laid down a blistering time of 36.71 seconds, where as Richard only managed a mid 38 second run. I was looking good for an outright win. (or so I thought)
For the last run I tried to improve on my earlier time, however I didn't get away from the start very well. The car snapped sideways under power as I up-shifted into second gear and spun all four wheels, loosing precious fractions of a second. They say Richard Mason doesn't like to loose, (who does?) it must be the case because he certainly managed to pull something out of the bag on his last run, putting down a 36.63 second time against my 36.75. Enough to win outright and set a new event record. (The next closest cars were over 3 seconds behind us)
I'm absolutely wrapped with my second place finish. To be swapping the lead with NZ's top rally driver in a car that is a lot older and of lower spec is a great achievement. Add to that the fact that he is extremely race fit having come straight from his win in the 2200+Km Targa event. Where as I have done just two short events in the last 6 months and am about as unfit as I've ever been.
A great day! Roll on next year!
The turnout was huge, over forty cars this year including NZ's top rally driver Richard Mason fresh from his win of the 2008 Targa (tarmac) Rally last weekend. As I have mentioned in an earlier post I set a new record for the event last year at 37.27 seconds for the 900-metre dash to the top of the hill. However it became evident from the first run that Richard Mason was there to have a crack at beating it. He posted a 37.7 on his first time up the hill, where as I put down a slow 38.98, taking it easy on my first run as I found my limits.
After seeing his time I decided to have a go at getting up the hill in 36 seconds. I lowered my tyre pressures for more grip and raised the turbo boost pressure for more power. Sure enough I laid down a blistering time of 36.71 seconds, where as Richard only managed a mid 38 second run. I was looking good for an outright win. (or so I thought)
For the last run I tried to improve on my earlier time, however I didn't get away from the start very well. The car snapped sideways under power as I up-shifted into second gear and spun all four wheels, loosing precious fractions of a second. They say Richard Mason doesn't like to loose, (who does?) it must be the case because he certainly managed to pull something out of the bag on his last run, putting down a 36.63 second time against my 36.75. Enough to win outright and set a new event record. (The next closest cars were over 3 seconds behind us)
I'm absolutely wrapped with my second place finish. To be swapping the lead with NZ's top rally driver in a car that is a lot older and of lower spec is a great achievement. Add to that the fact that he is extremely race fit having come straight from his win in the 2200+Km Targa event. Where as I have done just two short events in the last 6 months and am about as unfit as I've ever been.
A great day! Roll on next year!
Saturday, November 8, 2008
Election Day 08
Wow what a fantastic day it is outside today! It's car cleaning weather!
So far I've managed to clean both the Evo race-car and STi Impreza. I'm not sure I have enough energy left to do the van, I think it can wait till next time.
Tomorrow we are travelling over to the Wairarapa to enter a hillclimb event there.
The event is at Admiral road, near Gladstone. It's a very short hillclimb, only about 40 seconds to the top, but very tight and twisty.
Last year I entered and broke the record that had stood for nearly 25 years by 2 seconds. This time round I'm just in it for the points. I may not be able to make one or two of the next rounds of the 'Duncan McKenzie' series so it's important I build a lead now so I can hopefully win the series again this year.
Health-wise I feel completely normal except this darn cough and persistent asthma.
I have no idea if it's because of the lung involvement, I guess it's got to be, But I have suffered from it in the past when scans showed no involvement. So who knows.
If I wasn't coughing all the time I'd be convinced there was nothing wrong with me.
It's easy to see how some people only find out at the last minute that they have cancer and that it has been with them for years.
I fired an email off yesterday to the haematologist at Wellington hospital. I figure he's had two day's already to schedule me an appointment, so it was time for a hurray along from me. None of this waiting 18 months for a referral! The squeaky wheel gets the oil.!
Well I'd better continue packing the van full of race gear, then load the car onto Murray's truck for the trip over the hill early tomorrow. Then it's off to cast my vote.
I'll post an update on my race results tomorrow.
So far I've managed to clean both the Evo race-car and STi Impreza. I'm not sure I have enough energy left to do the van, I think it can wait till next time.
Tomorrow we are travelling over to the Wairarapa to enter a hillclimb event there.
The event is at Admiral road, near Gladstone. It's a very short hillclimb, only about 40 seconds to the top, but very tight and twisty.
Last year I entered and broke the record that had stood for nearly 25 years by 2 seconds. This time round I'm just in it for the points. I may not be able to make one or two of the next rounds of the 'Duncan McKenzie' series so it's important I build a lead now so I can hopefully win the series again this year.
Health-wise I feel completely normal except this darn cough and persistent asthma.
I have no idea if it's because of the lung involvement, I guess it's got to be, But I have suffered from it in the past when scans showed no involvement. So who knows.
If I wasn't coughing all the time I'd be convinced there was nothing wrong with me.
It's easy to see how some people only find out at the last minute that they have cancer and that it has been with them for years.
I fired an email off yesterday to the haematologist at Wellington hospital. I figure he's had two day's already to schedule me an appointment, so it was time for a hurray along from me. None of this waiting 18 months for a referral! The squeaky wheel gets the oil.!
Well I'd better continue packing the van full of race gear, then load the car onto Murray's truck for the trip over the hill early tomorrow. Then it's off to cast my vote.
I'll post an update on my race results tomorrow.
Thursday, November 6, 2008
Response from Germany.
I've just received word from Germany on what they suggest. I've pasted it below.
Interesting that they have come to the same conclusion that I have.
Dear Ron,
thank you for your e-mail. Dr. Kopic and Dr. Draczynski have reviewed your PET results and would suggest: high-dosage chemotherapy plus stem-cell support - this is the sole option that you have.
Due to the fact that you are young, Dr. Kopic would not recommend conventional therapy, but the above-mentioned high-dosage chemotherapy.
Please let us know what you plan to do. Dr. Kopic would suggest that you have that done at your home address, it will probably be cheaper for you.
If you want to come here, you would have to plan a 4-weeks stay.
If you have any further questions, please feel free to contact us at any time.
Kind regards
Interesting that they have come to the same conclusion that I have.
Dear Ron,
thank you for your e-mail. Dr. Kopic and Dr. Draczynski have reviewed your PET results and would suggest: high-dosage chemotherapy plus stem-cell support - this is the sole option that you have.
Due to the fact that you are young, Dr. Kopic would not recommend conventional therapy, but the above-mentioned high-dosage chemotherapy.
Please let us know what you plan to do. Dr. Kopic would suggest that you have that done at your home address, it will probably be cheaper for you.
If you want to come here, you would have to plan a 4-weeks stay.
If you have any further questions, please feel free to contact us at any time.
Kind regards
Wednesday, November 5, 2008
Bad News.
Yesterday I got a really weird email from my GP saying that he could refer me to Dr Alwyn D'Souza the haematologist at Wellington Hospital if I wanted him to. He also said that Dr Dady had no interest in seeing me.
That came as a huge shock as I had not seen the PET scan results yet but it could only mean one thing. That the scan was positive for Hodgkins.
I quickly fired off emails to both my GP and the Dr at Pacific Radiology saying "please explain". Only Trevor Fitzjohn from Pacific replied.
He said that the results had been confirmed that day and were in the post to me and my GP. That he had contacted Wellington hospital to find out who to send the results to there, and that Dr D'Souza was keen to see me.
The result was a very upsetting and stressful night for Sarah as she worried over what the report would contain. I'd resolved myself to the fact it was not going to be good news.
Sure enough today I got two copies of the written report in the post along with a CD of the scan images.
The scan shows that I have new areas of involvement in my chest and some lung involvement as well. That would explain the cough. There are no other significant areas of involvement. The liver, spleen and bones are still clear.
I have sent the results to Germany for their opinion and I've asked if Dr D'Souza, the haematologist at the Wgtn Blood and cancer centre can see me as soon as possible.
Treatment-wise it looks like I'm back where I was three months ago; High dose chemo with stem cell recovery (transplant). It's way too early to even start planning anything but my thoughts are to have the Autologous stem cell transplant here in NZ.
The reason for this would be that if it failed we could then still investigate other treatments overseas. Doing it the other way round may not be affordable.
So there you have it.. really, really bad news. I'm sorry to have to share that with you. I was so looking forward to finally knocking it on the head once and for all. Those night sweats I had a few weeks ago were the bad news I had suspected they were. As to why they have not returned I have no idea. I'm certainly not complaining.
Mentally I'm as up-beat as ever, I'm sure in the end I'll beat this. It's Sarah that I worry about. As you can imagine she really takes it hard.
I'll update once I've spoken to the haematologist or had word from Germany on their thoughts.
..Ron
That came as a huge shock as I had not seen the PET scan results yet but it could only mean one thing. That the scan was positive for Hodgkins.
I quickly fired off emails to both my GP and the Dr at Pacific Radiology saying "please explain". Only Trevor Fitzjohn from Pacific replied.
He said that the results had been confirmed that day and were in the post to me and my GP. That he had contacted Wellington hospital to find out who to send the results to there, and that Dr D'Souza was keen to see me.
The result was a very upsetting and stressful night for Sarah as she worried over what the report would contain. I'd resolved myself to the fact it was not going to be good news.
Sure enough today I got two copies of the written report in the post along with a CD of the scan images.
The scan shows that I have new areas of involvement in my chest and some lung involvement as well. That would explain the cough. There are no other significant areas of involvement. The liver, spleen and bones are still clear.
I have sent the results to Germany for their opinion and I've asked if Dr D'Souza, the haematologist at the Wgtn Blood and cancer centre can see me as soon as possible.
Treatment-wise it looks like I'm back where I was three months ago; High dose chemo with stem cell recovery (transplant). It's way too early to even start planning anything but my thoughts are to have the Autologous stem cell transplant here in NZ.
The reason for this would be that if it failed we could then still investigate other treatments overseas. Doing it the other way round may not be affordable.
So there you have it.. really, really bad news. I'm sorry to have to share that with you. I was so looking forward to finally knocking it on the head once and for all. Those night sweats I had a few weeks ago were the bad news I had suspected they were. As to why they have not returned I have no idea. I'm certainly not complaining.
Mentally I'm as up-beat as ever, I'm sure in the end I'll beat this. It's Sarah that I worry about. As you can imagine she really takes it hard.
I'll update once I've spoken to the haematologist or had word from Germany on their thoughts.
..Ron
Saturday, November 1, 2008
The PET Scan..
I had my PET scan done yesterday. It went really well.
I guess after four scans I must be getting used to it, as I was very relaxed right through-out. I now hold the record for having recieved the most number of PET scans in NZ.
Basically a PET (Positron Emission Tomography) scan is very similar to a CT scan. It just takes a little longer. An hour before the scan I am injected with a radioactive sugar isotope. Then I'm left on a bed for an hour to lay perfectly still and relax.
Cancer cells are very sugar hungry, so they soak up the isotope. This makes it very easy to identify them on a scan. The reason for laying perfectly still is so that your muscles don't soak up too much of the sugar and give false positives or cloud the results.
This time round I was also given a barium solution to drink as well. This helps highlight your intestines and bowel.
The scan itself takes about 30 minutes. It's a lot quicker these days than when I had one of the first PET scans done in NZ back in 2006, which was over an hour. It's just a case of laying on a table and being fed into a huge donut shaped scanner. It takes thousands of pictures in slices that are then assembled in such a way that the Doctors can virtually fly through the images of my body and look for any hot-spots.
I also got one piece of good news yesterday. My insurance company has agreed to pay for the scan. I wasn't sure if they would and the amount of paper work they want is a little daunting. However I figured it was worth the effort and I quickly rushed around last week putting a claim together. They phoned yesterday morning and said it was approved. The good thing is that now I'm on record with them and any future claims will be a lot simpler.
Next post will be mid next week when I get the PET scan results.. Fingers crossed for a clean bill of health!.
I guess after four scans I must be getting used to it, as I was very relaxed right through-out. I now hold the record for having recieved the most number of PET scans in NZ.
Basically a PET (Positron Emission Tomography) scan is very similar to a CT scan. It just takes a little longer. An hour before the scan I am injected with a radioactive sugar isotope. Then I'm left on a bed for an hour to lay perfectly still and relax.
Cancer cells are very sugar hungry, so they soak up the isotope. This makes it very easy to identify them on a scan. The reason for laying perfectly still is so that your muscles don't soak up too much of the sugar and give false positives or cloud the results.
This time round I was also given a barium solution to drink as well. This helps highlight your intestines and bowel.
The scan itself takes about 30 minutes. It's a lot quicker these days than when I had one of the first PET scans done in NZ back in 2006, which was over an hour. It's just a case of laying on a table and being fed into a huge donut shaped scanner. It takes thousands of pictures in slices that are then assembled in such a way that the Doctors can virtually fly through the images of my body and look for any hot-spots.
I also got one piece of good news yesterday. My insurance company has agreed to pay for the scan. I wasn't sure if they would and the amount of paper work they want is a little daunting. However I figured it was worth the effort and I quickly rushed around last week putting a claim together. They phoned yesterday morning and said it was approved. The good thing is that now I'm on record with them and any future claims will be a lot simpler.
Next post will be mid next week when I get the PET scan results.. Fingers crossed for a clean bill of health!.
Sunday, October 26, 2008
First race since returning home.
I've just got home from a full day's worth of motorsport and I'm worn out!.
I had a few concerns about whether I would be fit enough to man-handle my 550 horse power Mitsubishi Evolution around the streets of Seaview in my first outing in over six months. I needn't have worried.
The very first run in the car, a warm-up run, was fast enough to win the event out-right. I then did another faster run later in the day that consolidated the win. So all my fears about loosing my edge and not being up to the level of competition I'd previously been at before treatment have been laid to rest.
I only had one "moment" during the day. I had decided to not do my 4th and final run of the day as it was raining and it would be impossible to go faster in the wet than my earlier runs in the dry.
But then I bumped into my friend Alf and his son Daniel, and Daniel asked if I would take him with me on my final run of the day.
So we strapped him into the passengers seat and proceeded to do what I had promised to be a fairly sedate run around the tight street circuit on a very wet road. Amazingly the car had heaps more grip than I expected so I drove faster and faster as I found the limits of adhesion. Then as we completed the last tricky turn on what was now becoming a blindingly fast run, the engine threw off it's power-steering belt.
This left me mid corner with incredibly heavy steering and me facing a concrete kerb.
There is no way I could return the steering to where it needed to be in time to avoid colliding with the kerb, so I took my foot off the brake as we went up it, and re-applied it once we were on the footpath. There we were, parked perfectly on the footpath directly in front of a crowd of spectators. None of whom would have had any idea why I suddenly decided mid race to leave the road and park my car in such a bizarre place for no apparent reason. No damage was done, we drove very slowly back to the pits, fitted a replacement belt, packed up and went back the clubrooms to pick up my trophies.
A great day! (If you want to get an idea of what it is like to do a run of the Port Rd Street Sprint in my car. Check out this footage from a previous year.) >>Click here<<
PS: Still no night sweats now for three nights in a row.
I had a few concerns about whether I would be fit enough to man-handle my 550 horse power Mitsubishi Evolution around the streets of Seaview in my first outing in over six months. I needn't have worried.
The very first run in the car, a warm-up run, was fast enough to win the event out-right. I then did another faster run later in the day that consolidated the win. So all my fears about loosing my edge and not being up to the level of competition I'd previously been at before treatment have been laid to rest.
I only had one "moment" during the day. I had decided to not do my 4th and final run of the day as it was raining and it would be impossible to go faster in the wet than my earlier runs in the dry.
But then I bumped into my friend Alf and his son Daniel, and Daniel asked if I would take him with me on my final run of the day.
So we strapped him into the passengers seat and proceeded to do what I had promised to be a fairly sedate run around the tight street circuit on a very wet road. Amazingly the car had heaps more grip than I expected so I drove faster and faster as I found the limits of adhesion. Then as we completed the last tricky turn on what was now becoming a blindingly fast run, the engine threw off it's power-steering belt.
This left me mid corner with incredibly heavy steering and me facing a concrete kerb.
There is no way I could return the steering to where it needed to be in time to avoid colliding with the kerb, so I took my foot off the brake as we went up it, and re-applied it once we were on the footpath. There we were, parked perfectly on the footpath directly in front of a crowd of spectators. None of whom would have had any idea why I suddenly decided mid race to leave the road and park my car in such a bizarre place for no apparent reason. No damage was done, we drove very slowly back to the pits, fitted a replacement belt, packed up and went back the clubrooms to pick up my trophies.
A great day! (If you want to get an idea of what it is like to do a run of the Port Rd Street Sprint in my car. Check out this footage from a previous year.) >>Click here<<
PS: Still no night sweats now for three nights in a row.
Saturday, October 25, 2008
and then it suddenly stops...
Thursday was a terrible day, everything pointed to a relapse. There's almost nothing else that fits in with drenching night sweats, fever and my inability to gain weight other than Hodgkin's, menopause or Tuberculosis. (I think we can rule out the last two).
Then Thursday night came and I had no sweating, same again on Friday night. I really, really hope this continues! My PET scan is booked for Friday 31st October (next week) so I will know for sure either way in about two weeks time.
The doctors in Germany are putting together a plan in case of relapse and will advise me early next week. It would be great to be able to tell them it was a false alarm. They have advised me that my stem cells are in perfect condition and awaiting my direction as what to do with them. I shall wait for the PET result before deciding on whether to bring them back to NZ.
Meanwhile I have my first motorsport event tomorrow. It's a street sprint at Port rd, Seaview. I took my race car out for a drive yesterday to see how it felt. It's been six months since I last drove it. I floored it just once as I overtook a slow moving van going up Haywards hill. I kept it in third gear rather than down changing to second even though I was only going 40kph, regardless of this the acceleration still slammed me into my seat and I was almost on the vans bumper before I had turned the wheel enough to steer around it. In just two or three seconds seconds I'd well and truly broken the speed limit and had to brake hard to pull it back down to 100kph before I attracted unwanted attention.
The adrenaline made my hands shake and my heart pound for about 5 minutes after. I'm not sure how I'm going to do at the actual race. With my system so fragile at the moment and adrenaline being such a powerful toxin, I will have to be careful.
I'll let you know how I go. I must say though.. it's a lot more exciting than a stroll in the Bavarian country side!
Then Thursday night came and I had no sweating, same again on Friday night. I really, really hope this continues! My PET scan is booked for Friday 31st October (next week) so I will know for sure either way in about two weeks time.
The doctors in Germany are putting together a plan in case of relapse and will advise me early next week. It would be great to be able to tell them it was a false alarm. They have advised me that my stem cells are in perfect condition and awaiting my direction as what to do with them. I shall wait for the PET result before deciding on whether to bring them back to NZ.
Meanwhile I have my first motorsport event tomorrow. It's a street sprint at Port rd, Seaview. I took my race car out for a drive yesterday to see how it felt. It's been six months since I last drove it. I floored it just once as I overtook a slow moving van going up Haywards hill. I kept it in third gear rather than down changing to second even though I was only going 40kph, regardless of this the acceleration still slammed me into my seat and I was almost on the vans bumper before I had turned the wheel enough to steer around it. In just two or three seconds seconds I'd well and truly broken the speed limit and had to brake hard to pull it back down to 100kph before I attracted unwanted attention.
The adrenaline made my hands shake and my heart pound for about 5 minutes after. I'm not sure how I'm going to do at the actual race. With my system so fragile at the moment and adrenaline being such a powerful toxin, I will have to be careful.
I'll let you know how I go. I must say though.. it's a lot more exciting than a stroll in the Bavarian country side!
Thursday, October 23, 2008
Night sweats and fever consistant with relaspe.
It's been a bit of a stressful week. I've had a few night sweats again. This seems to be preceeded by a high temperature before going to bed. One night it was as high as 38.5, another 37.8. Almost everything I have read on the subject all comes back as Hodgkin's Lymphoma as being the most likely cause of both unexplained fever and consistent night sweats. Bugger!
I've been in touch with Pacific radiation as to why they had not yet confirmed a date for my PET scan. Apparently they were waiting for more info. Just exactly when they were planning to ask for it I have no idea. I dropped in a copy of the treatment details from Germany to them today and have been told it is likely I will have my scan next week.
Both Sarah and I are pretty upset about what looks to be another treatment failure. It's still early yet, and there is a minute chance it's not a relapse, the scan will confirm.
Either that or if I suddenly have no more night sweats, I'll know either way. I went to the Doctors today and saw a relieving GP, he agreed it did seem to point to Hodgkin's. We decided to try a course of antibiotics (Augmentin)to see if that helped my dry cough and fever.
I've also emailed the Klinik and asked for Dr Kopic's opinion.
I've been in touch with Pacific radiation as to why they had not yet confirmed a date for my PET scan. Apparently they were waiting for more info. Just exactly when they were planning to ask for it I have no idea. I dropped in a copy of the treatment details from Germany to them today and have been told it is likely I will have my scan next week.
Both Sarah and I are pretty upset about what looks to be another treatment failure. It's still early yet, and there is a minute chance it's not a relapse, the scan will confirm.
Either that or if I suddenly have no more night sweats, I'll know either way. I went to the Doctors today and saw a relieving GP, he agreed it did seem to point to Hodgkin's. We decided to try a course of antibiotics (Augmentin)to see if that helped my dry cough and fever.
I've also emailed the Klinik and asked for Dr Kopic's opinion.
Monday, October 20, 2008
Kind of an update.
Having been back now for just over 2 1/2 weeks, I've come to the conclusion that I will be forever cursed with paranoia. Every little twinge of my back, every symptom makes me worry that the disease has returned. That really annoying dry cough that I had right up until I arrived in Germany has returned. It actually started two days before I left. It may be asthma, it may be a chest cold. I seem to have been afflicted by it almost the whole time I've had Hodgkin's. However I have also had dry coughs that go on for months before in my life, long before Hodgkin's came along, so it may not be related. It may have something to do with my crappy immune system.
I made a discovery the other night. I took a sudafed before going to bed, to see if it helped with my cough. I get a runny nose and it runs down the back of my throat and causes me to cough. It's like when you inhale water or food. Anyway I completely soaked the bed in sweat during the night. I woke up feeling like my whole world had just crashed around me. When ever the disease has been active I suffer from night sweats.
In the morning I did some research and found that a leading cause of night sweats can also be paracetamol! I checked the active ingredients of Sudafed and sure enough it contains 500mg of it. Phew!! It also explains why I was having so many sweats in conjunction with the back aches in the weeks before I left. It may be that the pulsing back ache is my only true B-symptom as I was taking paracetamol for it.
Since then I've avoided paracetamol and have yet to have another night sweat. However I've still been waking up quite clammy during the night. Again this could have several causes. A chest infection (that dry cough) is one likely culprit. I've had no word yet on when I can expect my PET scan to take place. I had asked for early November. I'll feel a lot happier once it's done and the results come back, hopefully negative (clear).
..Ron
I made a discovery the other night. I took a sudafed before going to bed, to see if it helped with my cough. I get a runny nose and it runs down the back of my throat and causes me to cough. It's like when you inhale water or food. Anyway I completely soaked the bed in sweat during the night. I woke up feeling like my whole world had just crashed around me. When ever the disease has been active I suffer from night sweats.
In the morning I did some research and found that a leading cause of night sweats can also be paracetamol! I checked the active ingredients of Sudafed and sure enough it contains 500mg of it. Phew!! It also explains why I was having so many sweats in conjunction with the back aches in the weeks before I left. It may be that the pulsing back ache is my only true B-symptom as I was taking paracetamol for it.
Since then I've avoided paracetamol and have yet to have another night sweat. However I've still been waking up quite clammy during the night. Again this could have several causes. A chest infection (that dry cough) is one likely culprit. I've had no word yet on when I can expect my PET scan to take place. I had asked for early November. I'll feel a lot happier once it's done and the results come back, hopefully negative (clear).
..Ron
Saturday, October 4, 2008
Home.. Home at last!
Yeah I know.. I'm a slacker, I said I'd post something once I got home and settled in. Let's just say it took me a few days to find my feet again.
I left the Klinik on Monday 29th Sept at 6pm. In the morning my blood counts were 4.2 WBC and 50 for the platelets. I was given two units of platelets in the afternoon and sent on my way with a fist full of antibiotic tablets for the flight home.
Mentally I'd decided that the point the plane left the ground at Munich airport was the time I'd celebrate the end of my time in Germany. I'd been focusing on that point all week. It was probably the only thing that kept me relatively sane. You may have noticed that my posts were becoming increasingly less cheerful in those final days. I really was 'over the whole Germany thing'.
So there I was on board the plane and just about to take my seat next to the window, when the passenger in the aisle seat next to me greeted me with a loud "gidday mate, where ya from?". It was so good to hear that familiar Kiwi accent! "Wellington" I replied as I shook his hand. "I'm from Masterton, Bob's the name". We buckled ourselves in and continued to talk non-stop for the next couple of hours. I completely missed the opportunity to celebrate the take-off and my departure.
Bob, like me, is a man in his mid to late forties. He is over six foot tall and maybe 100+kg's. He wore a black heavy metal tee-shirt and jeans. Business was the reason for his travel. Every two years he travels to Germany for the big transportation trade fairs as part of his job for a trucking firm. The twelve hour flight from Munich to Hong Kong seemed to take no time at all as we discussed everything from rebuilding old Ford Falcons to our mutual agreement on how we believed all Germans spoke English but kept it a secret.
At Hong Kong airport I had a two hour wait for my connecting flight. I didn't enjoy the wait. I felt quite ill, and was genuinely concerned that if I got any worse I'd have to postpone flying and stay in a hotel until it passed. I took a couple of paracetamol tablets and by the time I needed to head off to the departure gate I was feeling a lot better. The queue for the gate was huge and I'd managed somehow be be the last in line. The guy in front of me looked strangely familiar... Oh, It was Bob, only he had changed from his black tee shirt and jeans into a business shirt and pants. We joked about the odds of having the same seats again and checked out our seat numbers. Opposite ends of the plane this time. Oh well. Bob asked me what I was doing when I got to Auckland. "Sitting for two hours in the terminal waiting for the flight to Wellington" I replied. Bob handed me a card. "I'll meet you at the Koru lounge" I took the card, complimentary entry to the first class lounge, we took our seats at opposite ends of the plane and so began the second leg of the journey.
The Air New Zealand 747 was far better appointed than the Lufthansa Airbus. Firstly you have an LCD screen in the seat rest in front of you. There are dozens of movies to choose from, plus audio channels and TV shows. I watched three movies and grabbed what sleep I could in between being startled awake by the endless babies cries and noise from the people around me. The woman that sat beside me was very large. In fact I had my doubts when she first sat down that she would fit in the seat. She kind of did. The sides of her stomach poured over the arm-rest like dough. I could not place my arm anywhere near it for fear of injuring her. I pushed myself into the corner of my seat, away from her, and remained there for the next eleven and a half hours.
As promised Bob was waiting for me at the Koru Club Lounge at Auckland airport. Unlimited free food and alcohol in a peaceful environment, what a great way to waste a couple of hours.. Only I can't drink alcohol so I stuck with orange juice. Bob introduced me to his boss and we sat and talked until our flights were called.
Sarah met me at Wellington airport, It was so good to see her again. Once home at around 3pm I immediately fell asleep on the couch. I woke briefly at around 8pm for dinner and then went straight to bed and slept for another twelve hours. Even now 4 days later, I'm still sleeping almost half of each day. On Friday I had organised to get a blood test and to see my doctor, Stu. The nurse that took my blood did a great job in finding a vein and getting a sample on the first try. I congratulated her and told her that she had done better than most people had in the last two months. She asked why I had traveled to Germany and I gave her the short version, but even that took ten minutes to relay. She said she used to be an ICU nurse and she agreed that the chances I was over-dosed back in 2005 was more likely than not, based on her own experiences in hospitals. We will never know for sure.
I visited Dr Stu later that day. The blood test results were not in yet. It had only been six hours.. welcome back to New Zealand! One of the IV sites on my right wrist has become inflamed so I got Dr Stu to write out a prescription for some antibiotic cream. He also wrote me a referral for the PET scan, and I got him to state that a copy of the results and CD of the images be sent to me. I asked him if he could email me the blood results when they came through. This he did a couple of hours later. here is what he wrote....
Hi Ron
They faxed it through urgently (cos they thought it was really bad). For you, I guess, it's pretty good!
Haemoglobin 115 (130-180)
Platelets 62 (150-450)
White cell count 4.5 (4-11) with normal neutrophils
Stu
I'm pretty happy about those counts! They are higher than the same day on the last cycle. I'll get one more test next week just to make sure they are on the rise still. I really wasn't looking forward to fronting up at hospital and demanding a platelet transfusion. I still get a lot of health professionals asking me who is in charge of my treatment. They always look at me in total disbelief when I say "I am". This is why I get DR Stu to write out all my referrals etc.. without his little bit of paper, nothing gets done. Even with the PET scan we wrote that a copy had to go to Dr Dady at Wellington hospital. I don't care if he gets a copy or not, but it's a way of getting around the stupid rule they have at Pacific Radiology that you can't have a PET scan unless the results are viewed by an Oncologist. Like what the heck is Wellington Hospital going to do with my results? I'm so far off their radar I might as well be on mars. I'll send a copy to Germany.
So that's about it folks, I'm feeling pretty good. I'm looking a lot healthier than I was when I left. It's only day 21 of the second cycle so I'm still recovering. Day 28 is when you'd consider that the treatment period is over.
This Monday I shall book a time for my PET scan, hopefully early November. Results from that should come trough a week or two after that.
Hopefully I will be posting some good news here after firing off an email reminder to those of you that have subscribed to my Blog-Roll (in the post below) in about mid November.
Till then... Ron
I left the Klinik on Monday 29th Sept at 6pm. In the morning my blood counts were 4.2 WBC and 50 for the platelets. I was given two units of platelets in the afternoon and sent on my way with a fist full of antibiotic tablets for the flight home.
Mentally I'd decided that the point the plane left the ground at Munich airport was the time I'd celebrate the end of my time in Germany. I'd been focusing on that point all week. It was probably the only thing that kept me relatively sane. You may have noticed that my posts were becoming increasingly less cheerful in those final days. I really was 'over the whole Germany thing'.
So there I was on board the plane and just about to take my seat next to the window, when the passenger in the aisle seat next to me greeted me with a loud "gidday mate, where ya from?". It was so good to hear that familiar Kiwi accent! "Wellington" I replied as I shook his hand. "I'm from Masterton, Bob's the name". We buckled ourselves in and continued to talk non-stop for the next couple of hours. I completely missed the opportunity to celebrate the take-off and my departure.
Bob, like me, is a man in his mid to late forties. He is over six foot tall and maybe 100+kg's. He wore a black heavy metal tee-shirt and jeans. Business was the reason for his travel. Every two years he travels to Germany for the big transportation trade fairs as part of his job for a trucking firm. The twelve hour flight from Munich to Hong Kong seemed to take no time at all as we discussed everything from rebuilding old Ford Falcons to our mutual agreement on how we believed all Germans spoke English but kept it a secret.
At Hong Kong airport I had a two hour wait for my connecting flight. I didn't enjoy the wait. I felt quite ill, and was genuinely concerned that if I got any worse I'd have to postpone flying and stay in a hotel until it passed. I took a couple of paracetamol tablets and by the time I needed to head off to the departure gate I was feeling a lot better. The queue for the gate was huge and I'd managed somehow be be the last in line. The guy in front of me looked strangely familiar... Oh, It was Bob, only he had changed from his black tee shirt and jeans into a business shirt and pants. We joked about the odds of having the same seats again and checked out our seat numbers. Opposite ends of the plane this time. Oh well. Bob asked me what I was doing when I got to Auckland. "Sitting for two hours in the terminal waiting for the flight to Wellington" I replied. Bob handed me a card. "I'll meet you at the Koru lounge" I took the card, complimentary entry to the first class lounge, we took our seats at opposite ends of the plane and so began the second leg of the journey.
The Air New Zealand 747 was far better appointed than the Lufthansa Airbus. Firstly you have an LCD screen in the seat rest in front of you. There are dozens of movies to choose from, plus audio channels and TV shows. I watched three movies and grabbed what sleep I could in between being startled awake by the endless babies cries and noise from the people around me. The woman that sat beside me was very large. In fact I had my doubts when she first sat down that she would fit in the seat. She kind of did. The sides of her stomach poured over the arm-rest like dough. I could not place my arm anywhere near it for fear of injuring her. I pushed myself into the corner of my seat, away from her, and remained there for the next eleven and a half hours.
As promised Bob was waiting for me at the Koru Club Lounge at Auckland airport. Unlimited free food and alcohol in a peaceful environment, what a great way to waste a couple of hours.. Only I can't drink alcohol so I stuck with orange juice. Bob introduced me to his boss and we sat and talked until our flights were called.
Sarah met me at Wellington airport, It was so good to see her again. Once home at around 3pm I immediately fell asleep on the couch. I woke briefly at around 8pm for dinner and then went straight to bed and slept for another twelve hours. Even now 4 days later, I'm still sleeping almost half of each day. On Friday I had organised to get a blood test and to see my doctor, Stu. The nurse that took my blood did a great job in finding a vein and getting a sample on the first try. I congratulated her and told her that she had done better than most people had in the last two months. She asked why I had traveled to Germany and I gave her the short version, but even that took ten minutes to relay. She said she used to be an ICU nurse and she agreed that the chances I was over-dosed back in 2005 was more likely than not, based on her own experiences in hospitals. We will never know for sure.
I visited Dr Stu later that day. The blood test results were not in yet. It had only been six hours.. welcome back to New Zealand! One of the IV sites on my right wrist has become inflamed so I got Dr Stu to write out a prescription for some antibiotic cream. He also wrote me a referral for the PET scan, and I got him to state that a copy of the results and CD of the images be sent to me. I asked him if he could email me the blood results when they came through. This he did a couple of hours later. here is what he wrote....
Hi Ron
They faxed it through urgently (cos they thought it was really bad). For you, I guess, it's pretty good!
Haemoglobin 115 (130-180)
Platelets 62 (150-450)
White cell count 4.5 (4-11) with normal neutrophils
Stu
I'm pretty happy about those counts! They are higher than the same day on the last cycle. I'll get one more test next week just to make sure they are on the rise still. I really wasn't looking forward to fronting up at hospital and demanding a platelet transfusion. I still get a lot of health professionals asking me who is in charge of my treatment. They always look at me in total disbelief when I say "I am". This is why I get DR Stu to write out all my referrals etc.. without his little bit of paper, nothing gets done. Even with the PET scan we wrote that a copy had to go to Dr Dady at Wellington hospital. I don't care if he gets a copy or not, but it's a way of getting around the stupid rule they have at Pacific Radiology that you can't have a PET scan unless the results are viewed by an Oncologist. Like what the heck is Wellington Hospital going to do with my results? I'm so far off their radar I might as well be on mars. I'll send a copy to Germany.
So that's about it folks, I'm feeling pretty good. I'm looking a lot healthier than I was when I left. It's only day 21 of the second cycle so I'm still recovering. Day 28 is when you'd consider that the treatment period is over.
This Monday I shall book a time for my PET scan, hopefully early November. Results from that should come trough a week or two after that.
Hopefully I will be posting some good news here after firing off an email reminder to those of you that have subscribed to my Blog-Roll (in the post below) in about mid November.
Till then... Ron
Monday, September 29, 2008
Day 16: Going Home. and the Blog roll-call
Finally, it's time to go home. In four hours time the big yellow taxi comes and takes me away.
This morning my wbc was 4.2 and platelets 50. I've had another granocyte injection and later this afternoon I'll get two final units of platelets. Over the next few days/week my counts should improve naturally as my marrow slowly builds.
I've also been give another IV of antibiotics to get me through the trip home.
It sure has been an incredibly long time here. At first it was an adventure, but after the first cycle was complete it became an ordeal. Everything repeated, and although sometimes it was good to know what I was in for, It didn't necessarily make it any easier.
Looking back over the blog I can see the patterns, some days I was up, other days I was down. Some days I was very critical and on others was very pleased with the treatment. In hindsight perhaps the steroids had a part to play there. No doubt, once I can look back on things with hindsight I may need to do some judicious editing. :)
One of the things I've noticed about other peoples Blogs that have been about cancer or a period of cancer treatment, Is that often they suddenly stop. Nothing more is posted. No PET scan results, no updates as to whether the disease has relapsed or gone into long term remission. This can actually be quite depressing if you happen to stumble upon a blog, get involved in it and then be left with the impression that maybe things didn't work out, or even worse the blog's writer has passed away!
I'll do another post when I get home and settled back in. After that I'll do updates on my state of health as test results etc come in. The first will be in 8-10 weeks time after my PET scan.
Then every 3-6 months after that.
What I have done is set up a mailing list on my server. The idea is that by clicking the link below and sending me an email, you'll be notified when I post an update. Please do this even if I already have your email address as it won't automatically be added to the reminder mailing list.
To be added to that list, please click the email link below and hit send on your email client.
Otherwise just send a blank email to blogroll@my-place.co.nz to be added.
>>> Add me to the Blog Roll-call list <<<
Thank you for sharing in my journey, It's been great sharing it with you.
The dozens of emails and comments you have all sent me have been an enormous source of reassurance and comfort and I thank you all very much.
...Ron
This morning my wbc was 4.2 and platelets 50. I've had another granocyte injection and later this afternoon I'll get two final units of platelets. Over the next few days/week my counts should improve naturally as my marrow slowly builds.
I've also been give another IV of antibiotics to get me through the trip home.
It sure has been an incredibly long time here. At first it was an adventure, but after the first cycle was complete it became an ordeal. Everything repeated, and although sometimes it was good to know what I was in for, It didn't necessarily make it any easier.
Looking back over the blog I can see the patterns, some days I was up, other days I was down. Some days I was very critical and on others was very pleased with the treatment. In hindsight perhaps the steroids had a part to play there. No doubt, once I can look back on things with hindsight I may need to do some judicious editing. :)
One of the things I've noticed about other peoples Blogs that have been about cancer or a period of cancer treatment, Is that often they suddenly stop. Nothing more is posted. No PET scan results, no updates as to whether the disease has relapsed or gone into long term remission. This can actually be quite depressing if you happen to stumble upon a blog, get involved in it and then be left with the impression that maybe things didn't work out, or even worse the blog's writer has passed away!
I'll do another post when I get home and settled back in. After that I'll do updates on my state of health as test results etc come in. The first will be in 8-10 weeks time after my PET scan.
Then every 3-6 months after that.
What I have done is set up a mailing list on my server. The idea is that by clicking the link below and sending me an email, you'll be notified when I post an update. Please do this even if I already have your email address as it won't automatically be added to the reminder mailing list.
To be added to that list, please click the email link below and hit send on your email client.
Otherwise just send a blank email to blogroll@my-place.co.nz to be added.
>>> Add me to the Blog Roll-call list <<<
Thank you for sharing in my journey, It's been great sharing it with you.
The dozens of emails and comments you have all sent me have been an enormous source of reassurance and comfort and I thank you all very much.
...Ron
Sunday, September 28, 2008
Day 15: Marrow responding right on cue!
Well what a relief that is! I tell ya, you could set your watch by it. Platelets are 71 and the WBC has doubled to 1.2 overnight. The platelet transfusion yesterday should have only raised the count by 40, so there is strong indication that I'm making my own again. The doctors were very surprised as they were talking about giving me another transfusion today and expected the count to be around 40 for the platelets.
Tonight I have the last of my Dendritic Cell Vaccine shots, and a shot of Interferon. Before that I'll have another blood test. I'd expect to see the WBC in the 2's by then.
All going well I'll be free to leave tomorrow.
I can't believe how long its been! By the time I return to NZ it would have been almost two months. That's a long time to spend away, most of it in spent shut in a small room.
Although Sarah did make it over here for two weeks, and we did get out a little, it doesn't really compare to quality time spent together back home in each others company. For the first week she was here I was still in treatment. Finally I can start thinking about the finer things in life again.. Good company, good food, maybe a tiny amount of good wine.
Just driving a car again will be an experience. Sarah tells me the battery has gone flat on my Impreza, she's going to bring it to the airport so I can drive home.
Then there's all the up-coming local motorsport events.. heck! How am I going to handle going from walking everywhere for the last couple of months to getting back behind the wheel of a 550hp race car? will be interesting if not slightly scary for the first time.
Sarah and I have both agreed that we will be limiting the motorsport to only local events for the foreseeable future so we can focus on building our new house. That's another thing I've mentally put on hold for quite some time.
OK.. Can you tell I'm firing myself up to leave? Must be getting exited. I'll try and temper it until tonight's counts are in.
5:42pm I've just had another blood test and my white cell count has doubled again to 2.4 in the last 6 1/2 hours. Platelets have dropped slightly to 66, that's to be expected.
My stomach is a patch-work of small yellow bruises and red spots from the many injections I've had there. I just got another three. Two of them were the vaccine, man they were big needles! I'm used to the tiny ones that the GCSF comes in. I used to do those myself, but these were big suckers! Yuk!
I also got a shot of interferon, which I'm told acts in way as to allow the vaccine to work better and improve efficacy. I'm expecting a slight fever, body aches etc overnight from the vaccine.
The plan now is to get up early tomorrow (Monday morning) and go down to the nurses station for another blood test. Based on those readings Dr D will decide if we need to administer either of the growth factors to increase counts for the trip home.
So unless something totally out of character happens overnight I'm flying home tomorrow evening!
6:42pm, Man that vaccine has got a kick! I've started shaking uncontrollably with chills. No matter what I do I can't get warm. The fever has arrived with a punch. I've taken the paracetamol the Dr D gave me. So far no improvement one hour later. Another interesting side effect was the feeling of having a cold. My nose started to run and I developed a cough from the gunk running down the back of my throat. Then just as I was convinced I had a major problem. It disappeared. What's with that!?
My lower back is aching, it feels similar to my 'pulsing back ache' B-symptom I get when my disease is active. However there is a 'sweet spot' where I can lay with no pain, so it's not the same. Phew!
My dinner has been delivered, it took me ten minutes to drag myself from my bed. It doesn't look that great anyway.. so I'll probably pass on the main. I'd better mention lunch. probably one of the best meals I've had since arriving. Roast duck on spaghetti noodles with a fresh tomato sauce. Isn't that just typical. Yeah..I've decided to scrap dinner.. not in the mood for the salty chicken and pasta.
Gosh it doesn't pay to be honest around her! Biljana just popped in to see if I was OK. So I mentioned about the chills. She checked my temperature and It's 38.3 (again) so yeah it's a fever. But I already knew that! and that is why Dr D gave me the paracetamol in the first place.
Now they have decided to hook me back up to some IV's again.. sigh. I just want to go to sleep, sweat it out and wake up tomorrow raring to go!
8:55pm: Temperature is now down to 37.6 and I'm feeling a lot better. So I'm hitting the hay.
Last day tomorrow! Woo hoo!
Tonight I have the last of my Dendritic Cell Vaccine shots, and a shot of Interferon. Before that I'll have another blood test. I'd expect to see the WBC in the 2's by then.
All going well I'll be free to leave tomorrow.
I can't believe how long its been! By the time I return to NZ it would have been almost two months. That's a long time to spend away, most of it in spent shut in a small room.
Although Sarah did make it over here for two weeks, and we did get out a little, it doesn't really compare to quality time spent together back home in each others company. For the first week she was here I was still in treatment. Finally I can start thinking about the finer things in life again.. Good company, good food, maybe a tiny amount of good wine.
Just driving a car again will be an experience. Sarah tells me the battery has gone flat on my Impreza, she's going to bring it to the airport so I can drive home.
Then there's all the up-coming local motorsport events.. heck! How am I going to handle going from walking everywhere for the last couple of months to getting back behind the wheel of a 550hp race car? will be interesting if not slightly scary for the first time.
Sarah and I have both agreed that we will be limiting the motorsport to only local events for the foreseeable future so we can focus on building our new house. That's another thing I've mentally put on hold for quite some time.
OK.. Can you tell I'm firing myself up to leave? Must be getting exited. I'll try and temper it until tonight's counts are in.
5:42pm I've just had another blood test and my white cell count has doubled again to 2.4 in the last 6 1/2 hours. Platelets have dropped slightly to 66, that's to be expected.
My stomach is a patch-work of small yellow bruises and red spots from the many injections I've had there. I just got another three. Two of them were the vaccine, man they were big needles! I'm used to the tiny ones that the GCSF comes in. I used to do those myself, but these were big suckers! Yuk!
I also got a shot of interferon, which I'm told acts in way as to allow the vaccine to work better and improve efficacy. I'm expecting a slight fever, body aches etc overnight from the vaccine.
The plan now is to get up early tomorrow (Monday morning) and go down to the nurses station for another blood test. Based on those readings Dr D will decide if we need to administer either of the growth factors to increase counts for the trip home.
So unless something totally out of character happens overnight I'm flying home tomorrow evening!
6:42pm, Man that vaccine has got a kick! I've started shaking uncontrollably with chills. No matter what I do I can't get warm. The fever has arrived with a punch. I've taken the paracetamol the Dr D gave me. So far no improvement one hour later. Another interesting side effect was the feeling of having a cold. My nose started to run and I developed a cough from the gunk running down the back of my throat. Then just as I was convinced I had a major problem. It disappeared. What's with that!?
My lower back is aching, it feels similar to my 'pulsing back ache' B-symptom I get when my disease is active. However there is a 'sweet spot' where I can lay with no pain, so it's not the same. Phew!
My dinner has been delivered, it took me ten minutes to drag myself from my bed. It doesn't look that great anyway.. so I'll probably pass on the main. I'd better mention lunch. probably one of the best meals I've had since arriving. Roast duck on spaghetti noodles with a fresh tomato sauce. Isn't that just typical. Yeah..I've decided to scrap dinner.. not in the mood for the salty chicken and pasta.
Gosh it doesn't pay to be honest around her! Biljana just popped in to see if I was OK. So I mentioned about the chills. She checked my temperature and It's 38.3 (again) so yeah it's a fever. But I already knew that! and that is why Dr D gave me the paracetamol in the first place.
Now they have decided to hook me back up to some IV's again.. sigh. I just want to go to sleep, sweat it out and wake up tomorrow raring to go!
8:55pm: Temperature is now down to 37.6 and I'm feeling a lot better. So I'm hitting the hay.
Last day tomorrow! Woo hoo!
Day 14: Hellooo.. Wake up Mr Marrow! It's nearly time to go home.
Oh dear! Still no activity on the bone marrow front.. My counts are worse today than yesterday.
Whites are still .6 but my platelets have dropped to 20. Maybe I was expecting too much, It was day 15 and 16 that things really got going last cycle. Day 16 unfortunately is also the day I fly home. I have a couple of options.. pull the plug tomorrow and rebook my flights if the counts have not improved, or hang out till Monday and hope for a last minute rally. If my marrow recovers exactly as it did last time then Monday will be the big day. My counts on day 16 last cycle were 4.7 WBC and 100 for platelets, easily safe enough for travel.
Dr D and I covered our options at this morning's meeting. I showed him my notebook full of meticulously detailed blood counts for each day of each cycle. ..Was good when he picked it up, studied the figures and concurred that we should see some improvement tomorrow.
He said that the airlines are usually very happy to alter flight plans when they are told by a doctor that a patient would be put at serious risk of infection if they were to fly. The big question is how soon I could get another flight.. I only need one or two extra days.
Treatment-wise, today I've had another two lots of antibiotic IV's, four of the std daily infusions, and two units of platelets. I really cranked up the speed on the drips, and managed to get through all eight by lunchtime. I hate being tied to that IV stand. Darn thing can't even dance very well.
So it's another day stuck in this tiny room unable to leave. I'm not even allowed to walk outside to stretch my legs. Everyone that enters is masked up. I feel like the boy in the bubble! Only I feel completely well, think I look healthy, and am slouching around in jeans and a tee-shirt.
Whites are still .6 but my platelets have dropped to 20. Maybe I was expecting too much, It was day 15 and 16 that things really got going last cycle. Day 16 unfortunately is also the day I fly home. I have a couple of options.. pull the plug tomorrow and rebook my flights if the counts have not improved, or hang out till Monday and hope for a last minute rally. If my marrow recovers exactly as it did last time then Monday will be the big day. My counts on day 16 last cycle were 4.7 WBC and 100 for platelets, easily safe enough for travel.
Dr D and I covered our options at this morning's meeting. I showed him my notebook full of meticulously detailed blood counts for each day of each cycle. ..Was good when he picked it up, studied the figures and concurred that we should see some improvement tomorrow.
He said that the airlines are usually very happy to alter flight plans when they are told by a doctor that a patient would be put at serious risk of infection if they were to fly. The big question is how soon I could get another flight.. I only need one or two extra days.
Treatment-wise, today I've had another two lots of antibiotic IV's, four of the std daily infusions, and two units of platelets. I really cranked up the speed on the drips, and managed to get through all eight by lunchtime. I hate being tied to that IV stand. Darn thing can't even dance very well.
So it's another day stuck in this tiny room unable to leave. I'm not even allowed to walk outside to stretch my legs. Everyone that enters is masked up. I feel like the boy in the bubble! Only I feel completely well, think I look healthy, and am slouching around in jeans and a tee-shirt.
Friday, September 26, 2008
Day 13: Cycle Two. Dum dee doo...
Aah the waiting game.. sigh.. I'm stuck in my room for another day of isolation. WBC has dropped further to just .6 (normal 6.8+), however my platelets have climbed slightly to 32 (normal 150-450). I'm expecting to see a big improvement tomorrow. In fact I'm really hoping to see some sort of miraculous climb in counts over the next three days, as I really want to fly home on Monday as scheduled.
Last night was a bit of a worry, I had been feeling hot one minute and cold the next. So I asked the nurse to check my temperature. Sure enough I was running a fever. It looks like it was probably just a reaction to the growth factors, but it could just as easily have been an infection.
I'm severely neutropenic at the moment, so any sort of infection can run rampant in just a few hours. Ignoring it and going to sleep could prove fatal. There's nothing quite like waking up dead in the morning to ruin your day!
This morning I've had another round of antibiotics and IV's, plus another Granocyte (GCSF) injection to stimulate neutrophils (a type of white blood cell).
I've been a proponent of the healing power of honey for quite some time. This week I've been adding Manuka Honey to my green tea to ward off any repeat of the problems I've had in the past with mouth ulcers and infection. Today I read an item on an internet news site that Canadian scientists have discovered that some forms of honey, including NZ's Manuka honey is far more potent at killing bacteria than even the most powerful antibiotics available. This included the drug resistant strains of the so called super-bugs, such as MRSA. Gee ya think!
I wonder if the staff at Wellington hopsital's radiation dept will take the study by the Canadian scientists a little more seriously than they did when I told them about the healing properties of manuka honey earlier this year?
There is no shortage of studies and articles about the amazing healing, anti-fungal and antibacterial properties of manuka honey. It's been a Kiwi home remedy for years, now the world is finally catching on. I wonder how the big drug companies are going to react to that? No money to made there! and it works better than anything they currently have.. Hmm.
On a similar note, while doing some research on platelet counts, I discovered some articles on the tropical disease 'dengue hemorrhagic fever' which kills countless people through-out the world and which has no vaccine and no cure. Apparently it has been treated quite successfully by thousands of sufferers by making a tea from the leaves of the Tawa Tawa plant. It's been said that there is a cure for every disease to found in the plants of the world. Sadly if there is no money to be made from discovering and cataloging these cures, many of which have been used for centuries by indigenous people, then it is unlikely that they will ever be researched and used in mainstream medicine.
Last night was a bit of a worry, I had been feeling hot one minute and cold the next. So I asked the nurse to check my temperature. Sure enough I was running a fever. It looks like it was probably just a reaction to the growth factors, but it could just as easily have been an infection.
I'm severely neutropenic at the moment, so any sort of infection can run rampant in just a few hours. Ignoring it and going to sleep could prove fatal. There's nothing quite like waking up dead in the morning to ruin your day!
This morning I've had another round of antibiotics and IV's, plus another Granocyte (GCSF) injection to stimulate neutrophils (a type of white blood cell).
I've been a proponent of the healing power of honey for quite some time. This week I've been adding Manuka Honey to my green tea to ward off any repeat of the problems I've had in the past with mouth ulcers and infection. Today I read an item on an internet news site that Canadian scientists have discovered that some forms of honey, including NZ's Manuka honey is far more potent at killing bacteria than even the most powerful antibiotics available. This included the drug resistant strains of the so called super-bugs, such as MRSA. Gee ya think!
I wonder if the staff at Wellington hopsital's radiation dept will take the study by the Canadian scientists a little more seriously than they did when I told them about the healing properties of manuka honey earlier this year?
There is no shortage of studies and articles about the amazing healing, anti-fungal and antibacterial properties of manuka honey. It's been a Kiwi home remedy for years, now the world is finally catching on. I wonder how the big drug companies are going to react to that? No money to made there! and it works better than anything they currently have.. Hmm.
On a similar note, while doing some research on platelet counts, I discovered some articles on the tropical disease 'dengue hemorrhagic fever' which kills countless people through-out the world and which has no vaccine and no cure. Apparently it has been treated quite successfully by thousands of sufferers by making a tea from the leaves of the Tawa Tawa plant. It's been said that there is a cure for every disease to found in the plants of the world. Sadly if there is no money to be made from discovering and cataloging these cures, many of which have been used for centuries by indigenous people, then it is unlikely that they will ever be researched and used in mainstream medicine.
Thursday, September 25, 2008
Day 12: Cycle Two. Isolation, No counts of my own.
Remember that parachute I talked about building a couple days ago? Would have been kinda handy about now. I had a blood transfusion late last night, two units of whole blood. This was in anticipation of a reduction in red cells when the neumega kicks in. It's a lucky thing I had the trans, I'd say my blood counts are basically made up of what I got from that blood.
White count is 1 and platelets are 24. I would say that my marrow is all but gone right now. However despite the low numbers, they are still better than same time last cycle. But I'm splitting hairs with such low counts.
Oddly enough I feel fine. However I won't leave my room for a day or two. It's just not worth it.
The doctors just dropped by, all masked up. Nothing new to add, we just discussed where the counts are at and what the plan is. I'll get another platelet transfusion immediately, plus this evening IV antibiotics just in case of infection.
Doctor Kopic keeps talking about possible further treatments. That really bothers me, as I'm not planning on relapsing! He talked about possible treatment options based around the results of a PET scan in 6-8 weeks time.(That would make four PET scans I've had in total, equal to the most anyone has had in NZ according to Pacific Radiology). I'm totally focused on being disease free when I leave here. I don't think it's healthy to think about relapsing unless it actually occurs.
I told the doctors that I went for a long walk yesterday, They looked at each other in horror!.
I said I was fine. But apparently they still think I'm going to bleed to death on the side of the road from some minor injury. Maybe they aren't familiar with the Kiwi attitude!
You have to remember that Dr K speaks very poor English. Most of the details are relayed via Dr D. However I didn't miss the dig that he made about me thinking I was Lance Armstrong.
7:24pm.(5:24am NZ time) I had a suspicion that I was running a slight fever, I asked the nurse to check my temperature.. I was right, 38.3. She's gone to get the doctor.. I'll keep you updated.
8:37pm: I've been given some industrial strength antibiotics via IV, and had some blood taken to be tested for any nastys. I should say that other than feeling chilled one minute and hot the next, I don't feel in any way like I have picked up anything. Tests will tell. With almost no immune system to speak of,this is a very serious situation, so I'll stay awake until I'm sure I'm OK. It's probably just a reaction to the neumega, it's a known side effect.
Will start a new post if I get worse..
11:11pm: I appear to be stable. So it's probably just a reaction. Going to get some sleep.
White count is 1 and platelets are 24. I would say that my marrow is all but gone right now. However despite the low numbers, they are still better than same time last cycle. But I'm splitting hairs with such low counts.
Oddly enough I feel fine. However I won't leave my room for a day or two. It's just not worth it.
The doctors just dropped by, all masked up. Nothing new to add, we just discussed where the counts are at and what the plan is. I'll get another platelet transfusion immediately, plus this evening IV antibiotics just in case of infection.
Doctor Kopic keeps talking about possible further treatments. That really bothers me, as I'm not planning on relapsing! He talked about possible treatment options based around the results of a PET scan in 6-8 weeks time.(That would make four PET scans I've had in total, equal to the most anyone has had in NZ according to Pacific Radiology). I'm totally focused on being disease free when I leave here. I don't think it's healthy to think about relapsing unless it actually occurs.
I told the doctors that I went for a long walk yesterday, They looked at each other in horror!.
I said I was fine. But apparently they still think I'm going to bleed to death on the side of the road from some minor injury. Maybe they aren't familiar with the Kiwi attitude!
You have to remember that Dr K speaks very poor English. Most of the details are relayed via Dr D. However I didn't miss the dig that he made about me thinking I was Lance Armstrong.
7:24pm.(5:24am NZ time) I had a suspicion that I was running a slight fever, I asked the nurse to check my temperature.. I was right, 38.3. She's gone to get the doctor.. I'll keep you updated.
8:37pm: I've been given some industrial strength antibiotics via IV, and had some blood taken to be tested for any nastys. I should say that other than feeling chilled one minute and hot the next, I don't feel in any way like I have picked up anything. Tests will tell. With almost no immune system to speak of,this is a very serious situation, so I'll stay awake until I'm sure I'm OK. It's probably just a reaction to the neumega, it's a known side effect.
Will start a new post if I get worse..
11:11pm: I appear to be stable. So it's probably just a reaction. Going to get some sleep.
Day11: Cycle Two. A long walk and some computer stuff
Just another average day in Bad Heilbrunn, Not a lot has happened, but I thought I'd post an update anyway.
My white cell count was only 1.3 today, so I have had a shot of GCSF this morning.
I'm to have Neumega tomorrow and possibly the next day. Platelet count today after yesterday's transfusion is 44.
I just got back from a very brisk 6km walk. I feel really good! It was basically the same walk Sarah and I did on Day 14 of the first cycle. Only this time I didn't need to stop for a rest. In fact I felt like I wanted to break into a run on the downhill sections!.
That really surprised me because my red cell count is quite low. I figured that was why they were going to give me whole blood today. However some more research tells me that when Neumega kick-starts platelet production, there is a corresponding drop in red cells.
Non-computer/techie people can stop reading here.
____________________________________
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I stayed up late last night doing computer stuff.. I got this idea in my head about running the Linux operating system from a USB flashdrive. I went hunting on the Internet and found a website that specialises in doing just that. The benefits are that you can plug your USB drive into anyone's computer, turn it on and it loads an alternative operating system. All your bookmarks, favorites, passwords and documents are right there as if it were your own PC. There is no access to the hard-drive of the host computer at all. There's no chance of picking up a nasty virus from the host machine as they can't run on a Linux system.
All run from a thumb-drive. Beats lugging a laptop around!
And it's much faster and better looking than windows.. oh and it's a free!
My white cell count was only 1.3 today, so I have had a shot of GCSF this morning.
I'm to have Neumega tomorrow and possibly the next day. Platelet count today after yesterday's transfusion is 44.
I just got back from a very brisk 6km walk. I feel really good! It was basically the same walk Sarah and I did on Day 14 of the first cycle. Only this time I didn't need to stop for a rest. In fact I felt like I wanted to break into a run on the downhill sections!.
That really surprised me because my red cell count is quite low. I figured that was why they were going to give me whole blood today. However some more research tells me that when Neumega kick-starts platelet production, there is a corresponding drop in red cells.
Non-computer/techie people can stop reading here.
____________________________________
____________________________________
I stayed up late last night doing computer stuff.. I got this idea in my head about running the Linux operating system from a USB flashdrive. I went hunting on the Internet and found a website that specialises in doing just that. The benefits are that you can plug your USB drive into anyone's computer, turn it on and it loads an alternative operating system. All your bookmarks, favorites, passwords and documents are right there as if it were your own PC. There is no access to the hard-drive of the host computer at all. There's no chance of picking up a nasty virus from the host machine as they can't run on a Linux system.
All run from a thumb-drive. Beats lugging a laptop around!
And it's much faster and better looking than windows.. oh and it's a free!
Tuesday, September 23, 2008
Day 10: Cycle Two. Out for the count.
It looks like I've hit the nadir on my platelet count. They tallied up at 32 this morning. Still 50% higher than the same point last cycle, but low enough to warrant some intervention. I'll have a platelet transfusion this evening.
I've queried Dr K on why I was given only one dose of Neumega two nights ago. Personally I would have started a more aggressive approach to avoid bottoming out. I thought maybe five days worth and then reappraise things from there. His answer was that there is no way of knowing how the drug will affect any one individual patient and he wanted to see how I reacted to a single dose. I could have told him. He must have forgotten that we went through the same thing last cycle. (Remember last cycle when I warned him he'd miss the window, and he came into my room saying "sorry, sorry, sorry")
I think yet again we have missed the window and blown the opportunity to build a parachute that would prevent platelet free-fall. Oh well.. a transfusion will come to the rescue, Great!.
If the previous pattern repeats, my counts will again drop at around day 14, not giving us enough time to administer Neumega before I return home. Therefore I'll need another transfusion, possibly just before departure. I've told both the doctors that I want to start a five day course of Neumega by Thursday at the latest. I wonder how many other patients make those sort of demands... I can't see him taking my advice any way, but at least I've said it.
Don't get me wrong, the treatment I'm getting is first class. Back in NZ they were only doing blood tests weekly and I was left for six weeks with no treatment at all and a count below 20.
It's just that I have marrow that has been described as being like "Snow on the desert sands". Conveying this seems to be the biggest problem. Ultimately I'm sure no harm will come of it. But just for once I'd rather we were in front of the eight ball, rather than behind it.
It looks like I will have the last dendritic cell vaccine on Sunday now. The lab has promised to have it ready for that time. Good, will save me from running a fever on the flight home.
5PM: I've just finished the platelet transfusion. So far I'm not seeing any signs of another histamine reaction like I had the previous two times. I also spent some time in the gym this afternoon as I was not allowed out for a walk in case I injured myself and bled to death on the side of the road.. somehow I just can't see that happening.
Nurse Biljana now trusts me completely with my IV's. Today she laid the whole lot out in the order she wanted them to be administered and told me how fast each could be delivered. I usually slow them down anyway, too fast and I get a doughy feeling in my head. Selenium is given first and Vitamin C last, there has to be at least an hour between these two.. The reason for this has not been fully explained, but some research shows that it's to do with the way the two interact, causing the selenium to change into a form not able to be absorbed by the body.
Since the base drugs were left in my room for the first time ever. I got to read the labels and do some research on the net. (usually I only see the IV bottles with the drugs already mixed in saline). Google is our friend.
First up is Selenium, then Tationil followed by Actovegin and lastly Pascorbin (Vitamin C).
It looks like most of them are for reducing the toxic effects of the chemo and helping reduce both liver damage and neuropathy.
I'm not entirely convinced that any of them make a huge difference, but the doctors believe they do, so I'm happy to go along with that. Any little thing that gives you an edge..
I've queried Dr K on why I was given only one dose of Neumega two nights ago. Personally I would have started a more aggressive approach to avoid bottoming out. I thought maybe five days worth and then reappraise things from there. His answer was that there is no way of knowing how the drug will affect any one individual patient and he wanted to see how I reacted to a single dose. I could have told him. He must have forgotten that we went through the same thing last cycle. (Remember last cycle when I warned him he'd miss the window, and he came into my room saying "sorry, sorry, sorry")
I think yet again we have missed the window and blown the opportunity to build a parachute that would prevent platelet free-fall. Oh well.. a transfusion will come to the rescue, Great!.
If the previous pattern repeats, my counts will again drop at around day 14, not giving us enough time to administer Neumega before I return home. Therefore I'll need another transfusion, possibly just before departure. I've told both the doctors that I want to start a five day course of Neumega by Thursday at the latest. I wonder how many other patients make those sort of demands... I can't see him taking my advice any way, but at least I've said it.
Don't get me wrong, the treatment I'm getting is first class. Back in NZ they were only doing blood tests weekly and I was left for six weeks with no treatment at all and a count below 20.
It's just that I have marrow that has been described as being like "Snow on the desert sands". Conveying this seems to be the biggest problem. Ultimately I'm sure no harm will come of it. But just for once I'd rather we were in front of the eight ball, rather than behind it.
It looks like I will have the last dendritic cell vaccine on Sunday now. The lab has promised to have it ready for that time. Good, will save me from running a fever on the flight home.
5PM: I've just finished the platelet transfusion. So far I'm not seeing any signs of another histamine reaction like I had the previous two times. I also spent some time in the gym this afternoon as I was not allowed out for a walk in case I injured myself and bled to death on the side of the road.. somehow I just can't see that happening.
Nurse Biljana now trusts me completely with my IV's. Today she laid the whole lot out in the order she wanted them to be administered and told me how fast each could be delivered. I usually slow them down anyway, too fast and I get a doughy feeling in my head. Selenium is given first and Vitamin C last, there has to be at least an hour between these two.. The reason for this has not been fully explained, but some research shows that it's to do with the way the two interact, causing the selenium to change into a form not able to be absorbed by the body.
Since the base drugs were left in my room for the first time ever. I got to read the labels and do some research on the net. (usually I only see the IV bottles with the drugs already mixed in saline). Google is our friend.
First up is Selenium, then Tationil followed by Actovegin and lastly Pascorbin (Vitamin C).
It looks like most of them are for reducing the toxic effects of the chemo and helping reduce both liver damage and neuropathy.
I'm not entirely convinced that any of them make a huge difference, but the doctors believe they do, so I'm happy to go along with that. Any little thing that gives you an edge..
The man at the next table..
Usually when I eat downstairs in the restaurant I sit alone. I'll offer a cheery 'hello' to whoever else may be there, But lately I've been keeping to myself. One reason for this is the language difficulties, but another is that I've become tired of relating my story to those that ask. I feel like there's only so many times you can tell the same story before it looses it's energy, it's validity.
I've seen so many people come and go, and we have shared our stories time and time again.
Every meal time for the last week or so I have said hello to a South American couple and their adult daughter. They sit and converse in Spanish most of the time, but when they do speak English it is with a slight American accent. It made it hard for me to guess exactly where they were from.
Tonight, Bernie, a young guy here from Canada for treatment, stopped at my table on his way back to his room. We chatted for a few minutes about his travels over the weekend and he left.
Our conversation attracted the attention of the South Americans and the father called out to me "Sir", ..it didn't register and I continued drinking my soup.. "SIR" he said it a second time.
I looked up, wondering who's attention it was that he was trying to attract.
Michael introduced himself and we talked across the restaurant for some time. Eventually his wife and daughter departed for their room and he asked if he could sit and talk with me while I ate.
He ordered himself a beer, sat down, and told me his story..
Michael is a big framed, Caucasian man in his early 60's, he owns a farm in Panama where he grows coffee.
His wife has endured many years of conventional treatments, the chemo and radiation have left her frail and weak. He told me that he had always believed that they were doing the right things, listening to the doctors and taking their advice. They have travelled to America, Italy and Mexico in the hope of making her well.
He said that eventually they realised that if they kept doing the same things they were always going to get the same result; Things like liver and kidney damage, a weakened immune system and a poorer quality of life. All typical side effects of conventional chemotherapy and radiation treatments.
He told me that as a farmer he only knew how to farm, how to harvest coffee. Then one day in desperation he decided to take control of his wife's treatment. Having never used one in his life, He taught himself how to use a computer and he learned how and where to research. He told me he has spent many hundreds of hours teaching himself about her disease and what other treatments he could obtain for her. He said he had found out about plants and natural remedies that the Panama Indians have used for centuries. He hunted out and researched alternative treatments that could help reduce his wife's disease to a point that conventional treatments would have a better chance of working.
Finally all his research had lead him to the Leonardis Klinik.
His eyes swelled and reddened as he spoke, the emotional toll showing on his face. He said he and his wife were prepared to do anything to keep her alive. They will sell their farm if they need to, and he will never stop looking for ways to make her well again. What an incredible man.
I don't do their story justice, I can't in just a few paragraphs. But the stories I am privileged to be told are truly amazing. They show the incredible fighting spirit of the people that come here. I never really thought about it that way.. everyone that comes here is a fighter, a survivor. Not prepared to blindly stick with a flawed system, not prepared to just take the word of doctors working in a system dictated by limited budgets, or under the control of drug and insurance companies.
There is of course no magic bullet, no secret answer to it all. The fact is cancer will kill the vast majority of it's victims, no matter what they do. The answer I believe lies in the numbers. A certain percentage of people will beat it. The trick it finding what works for you. That particular treatment, that edge that will put you into that percentage.
I've seen so many people come and go, and we have shared our stories time and time again.
Every meal time for the last week or so I have said hello to a South American couple and their adult daughter. They sit and converse in Spanish most of the time, but when they do speak English it is with a slight American accent. It made it hard for me to guess exactly where they were from.
Tonight, Bernie, a young guy here from Canada for treatment, stopped at my table on his way back to his room. We chatted for a few minutes about his travels over the weekend and he left.
Our conversation attracted the attention of the South Americans and the father called out to me "Sir", ..it didn't register and I continued drinking my soup.. "SIR" he said it a second time.
I looked up, wondering who's attention it was that he was trying to attract.
Michael introduced himself and we talked across the restaurant for some time. Eventually his wife and daughter departed for their room and he asked if he could sit and talk with me while I ate.
He ordered himself a beer, sat down, and told me his story..
Michael is a big framed, Caucasian man in his early 60's, he owns a farm in Panama where he grows coffee.
His wife has endured many years of conventional treatments, the chemo and radiation have left her frail and weak. He told me that he had always believed that they were doing the right things, listening to the doctors and taking their advice. They have travelled to America, Italy and Mexico in the hope of making her well.
He said that eventually they realised that if they kept doing the same things they were always going to get the same result; Things like liver and kidney damage, a weakened immune system and a poorer quality of life. All typical side effects of conventional chemotherapy and radiation treatments.
He told me that as a farmer he only knew how to farm, how to harvest coffee. Then one day in desperation he decided to take control of his wife's treatment. Having never used one in his life, He taught himself how to use a computer and he learned how and where to research. He told me he has spent many hundreds of hours teaching himself about her disease and what other treatments he could obtain for her. He said he had found out about plants and natural remedies that the Panama Indians have used for centuries. He hunted out and researched alternative treatments that could help reduce his wife's disease to a point that conventional treatments would have a better chance of working.
Finally all his research had lead him to the Leonardis Klinik.
His eyes swelled and reddened as he spoke, the emotional toll showing on his face. He said he and his wife were prepared to do anything to keep her alive. They will sell their farm if they need to, and he will never stop looking for ways to make her well again. What an incredible man.
I don't do their story justice, I can't in just a few paragraphs. But the stories I am privileged to be told are truly amazing. They show the incredible fighting spirit of the people that come here. I never really thought about it that way.. everyone that comes here is a fighter, a survivor. Not prepared to blindly stick with a flawed system, not prepared to just take the word of doctors working in a system dictated by limited budgets, or under the control of drug and insurance companies.
There is of course no magic bullet, no secret answer to it all. The fact is cancer will kill the vast majority of it's victims, no matter what they do. The answer I believe lies in the numbers. A certain percentage of people will beat it. The trick it finding what works for you. That particular treatment, that edge that will put you into that percentage.
Monday, September 22, 2008
Day 9: Chemo two. Aaah .. feeling good!
Yesterday's walk must have really done me a world of good! I woke this morning feeling completely normal. That's a huge improvement over last cycle where I was suffering from zero energy at this point. I climbed the stairs this morning with very little effort and no real increase in pulse rate.
It's nearly lunch time, I've had three of my five IV's. Biljana initially brought them in one at a time, but now has left two on the table, casually telling me the flow rates as she left the room.
I've also had my daily meeting with the doctors. Dr Kopic has returned from his holiday and we covered all aspects of the treatment.
First up blood counts. WBC 6.1 and platelets 52. I'm happy with those counts. The nurses are concerned, but the doctors agree with me that they do not warrant intervention at this stage. We are monitoring them daily. Tomorrow will be interesting.
There was some doubt as to whether I had been given Neumega the night before last. The nurse said that was what she was injecting, but then nurse Biljana said I had not been given any. I certainly didn't get anything last night. I checked with the doctors and yes I got one hit of both GCSF for the whites and one of Neumega for the platelets as I had thought. (Why they would give me just one is beyond me.)
I've told them that I am leaving on September 29th. This has caused a bit of a panic as they want to give me my last Dendritic cell vaccine on that day. This is because that date is the earliest that it can be prepared. There will be no more 'hot dates' with Dr G in that cursed pizza oven. So that's good! Apparently it's too hard on my system so soon after chemo.
Also mentioned was the fact that I can leave the klinik as soon as my blood counts show stability.
Stem cells... Hmmm We have looked at having them stored here in Germany, but to be honest I'd be much happier if they were back in NZ. I was impressed with the way they are handled and stored by the team back in Wellington. I have no way of knowing if that level of expertise is the same here. There's still the risk of damage to the cells from their back and forth trip across the world and subsequent temporary storage. Fingers crossed they are OK. Fingers crossed that I'll never need them anyway.
I'll be in touch with World Couriers and Wgtn hospital today and start organising their safe return. The doctors here seem to be overwhelmed by the whole process of sending them back. You could see the relief on their faces when I said I would organise it.
So all in all a good day. Energy levels are climbing and bloods are yet to do anything too scary.
Lets hope it continues like this until I leave and I can get back to the real world.
It's nearly lunch time, I've had three of my five IV's. Biljana initially brought them in one at a time, but now has left two on the table, casually telling me the flow rates as she left the room.
I've also had my daily meeting with the doctors. Dr Kopic has returned from his holiday and we covered all aspects of the treatment.
First up blood counts. WBC 6.1 and platelets 52. I'm happy with those counts. The nurses are concerned, but the doctors agree with me that they do not warrant intervention at this stage. We are monitoring them daily. Tomorrow will be interesting.
There was some doubt as to whether I had been given Neumega the night before last. The nurse said that was what she was injecting, but then nurse Biljana said I had not been given any. I certainly didn't get anything last night. I checked with the doctors and yes I got one hit of both GCSF for the whites and one of Neumega for the platelets as I had thought. (Why they would give me just one is beyond me.)
I've told them that I am leaving on September 29th. This has caused a bit of a panic as they want to give me my last Dendritic cell vaccine on that day. This is because that date is the earliest that it can be prepared. There will be no more 'hot dates' with Dr G in that cursed pizza oven. So that's good! Apparently it's too hard on my system so soon after chemo.
Also mentioned was the fact that I can leave the klinik as soon as my blood counts show stability.
Stem cells... Hmmm We have looked at having them stored here in Germany, but to be honest I'd be much happier if they were back in NZ. I was impressed with the way they are handled and stored by the team back in Wellington. I have no way of knowing if that level of expertise is the same here. There's still the risk of damage to the cells from their back and forth trip across the world and subsequent temporary storage. Fingers crossed they are OK. Fingers crossed that I'll never need them anyway.
I'll be in touch with World Couriers and Wgtn hospital today and start organising their safe return. The doctors here seem to be overwhelmed by the whole process of sending them back. You could see the relief on their faces when I said I would organise it.
So all in all a good day. Energy levels are climbing and bloods are yet to do anything too scary.
Lets hope it continues like this until I leave and I can get back to the real world.
Sex, Spam and the hunt for intelligent Life.
I'm constantly amused by the never ending stream of junk I get sent via email. I have a really good server based spam filter that removes around 500 unwanted emails a month. Long before they ever reach my inbox. All those offers for free sex sites, Viagra and erectile dysfunction that I've never read. Perhaps I should..
This morning I got an invitation from Smilecity to take part in a survey on premature ejaculation. They claimed the survey would take three minutes to complete. I did it in two!
Perhaps it's just me, perhaps it's the endless stream of long, lonely nights in my room.. but it's occurred to me that the Germans have a twisted view on sex. (Persoanlly I believe any country that has tight fitting leather trousers as a traditional national costume has got to be a bit suspect!)
Take the other night for instance. I was channel hopping, looking for a decent diversion, when I came across another of 'those' documentaries. This one was called "All about Sex" it was German in origin, but the title was English as were all the excited exclamations and sexual descriptions. Perhaps they have realised that the German language is to romance, as a Pitbull is to a child's stuffed toy. (What am I talking about !! This program was to sex, as Postman Pat is to world-wide transport logistics!)
Speaking of stuffed toys.. The presenters and participants all sat on giant polystyrene spermatozoa that floated about the studio on invisible wires. It looked like a Karma Sutra merry-go-round! I'm guessing it wasn't coin operated.
Participants were then given an anatomically correct plastic torso and asked to locate various sexual organs. Most failed.
I particularly liked the detailed 'stick-man' animations of various sexual positions. These I could relate to now that I weigh about as much two pencils anyway. I switched channels and continued searching.. past the thirty odd offerings for "0900-sex" lines, past the casino hotlines, finally giving up, deciding to read my spam folder, hunting for signs of intelligent life and maybe a cure for two minute surveys.
This morning I got an invitation from Smilecity to take part in a survey on premature ejaculation. They claimed the survey would take three minutes to complete. I did it in two!
Perhaps it's just me, perhaps it's the endless stream of long, lonely nights in my room.. but it's occurred to me that the Germans have a twisted view on sex. (Persoanlly I believe any country that has tight fitting leather trousers as a traditional national costume has got to be a bit suspect!)
Take the other night for instance. I was channel hopping, looking for a decent diversion, when I came across another of 'those' documentaries. This one was called "All about Sex" it was German in origin, but the title was English as were all the excited exclamations and sexual descriptions. Perhaps they have realised that the German language is to romance, as a Pitbull is to a child's stuffed toy. (What am I talking about !! This program was to sex, as Postman Pat is to world-wide transport logistics!)
Speaking of stuffed toys.. The presenters and participants all sat on giant polystyrene spermatozoa that floated about the studio on invisible wires. It looked like a Karma Sutra merry-go-round! I'm guessing it wasn't coin operated.
Participants were then given an anatomically correct plastic torso and asked to locate various sexual organs. Most failed.
I particularly liked the detailed 'stick-man' animations of various sexual positions. These I could relate to now that I weigh about as much two pencils anyway. I switched channels and continued searching.. past the thirty odd offerings for "0900-sex" lines, past the casino hotlines, finally giving up, deciding to read my spam folder, hunting for signs of intelligent life and maybe a cure for two minute surveys.
Day 8: Chemo two. Heck I don't know!
How on earth can someone go from a White cell count of 1.7 (which is very low) and back up to 6.8 (which is completely normal) in the space of twelve hours? The doctors said that the GCSF they use is very fast acting, but hey.. come on .. it's no miracle drug! weird, weird, weird!
My platelet count today is 61, lowish.. but still safe.
Last night when Francesca took a blood sample, she flushed the line with saline and then changed to another syringe and drew blood from the cannula. My thinking is that was wrong.. she should have drawn some of the flushed saline/blood mix out of the vein first, in order to get a good sample. I think it may have skewed the test results.. I asked Biljana about this when she took another sample this morning and she agreed that it was important to draw back the diluted saline/blood and discard it before taking a fresh sample. Maybe I'm just fussy.. hang on.. who am I kidding! I'm a total control freak! They have even taken to bringing my IV's into my room one at a time now. Apparently they don't like the idea of me changing them myself. Sheesh.. I'd do everything if I could!
Heart rate is quite elevated. It was still pounding at 124bpm about ten minutes after climbing the stairs this morning returning from breakfast. I'm on the second floor (ground, 1st, 2nd) so it's a bit of a hike. I had the same thing last cycle.. it will improve tomorrow.. Just the steroids waning. My haemoglobin and Red cell counts are OK-ish, so it's not because of a lack of oxygen to my muscles.
When I first started treatment back in 2005 I made a promise to myself that I would never use a lift, always the stairs. It's days like today that I rue the decision to have ever made such a resolution! It was all part of my plan to not accept the disease. It was not going to make me an invalid. Taking the lift is for sick people. I'm not unwell, I'm just going through a bumpy patch! honest! :)
I'll pop outside shortly... see if I can't walk up the path to the main road. Should be good for a laugh if nothing else! I haven't so much as looked out the front door since last Sunday. I'm thinking if I can manage it, I'll head for the gas station and grab a packet of peanut M&M's. I think I've earned them..
4PM: Odd.. I managed to get about 100M down the road and my heart started pounding. I felt like I'd just sprinted the whole way. I genuinely felt worried that I'd be stuck on the side of the road having some sort of turn. I decided to ignore it. Not much I could do.. and besides turning back meant going up hill. I paced myself a little slower and I was fine. It actually felt really good!. Like I was burning some of the toxins out of my system. I managed to walk for just on an hour.. so maybe four or five Km's. I picked up those M&M's too!.
Oh..BTW.. tummy is all good now.. I'm sure you wanted to hear that.
My platelet count today is 61, lowish.. but still safe.
Last night when Francesca took a blood sample, she flushed the line with saline and then changed to another syringe and drew blood from the cannula. My thinking is that was wrong.. she should have drawn some of the flushed saline/blood mix out of the vein first, in order to get a good sample. I think it may have skewed the test results.. I asked Biljana about this when she took another sample this morning and she agreed that it was important to draw back the diluted saline/blood and discard it before taking a fresh sample. Maybe I'm just fussy.. hang on.. who am I kidding! I'm a total control freak! They have even taken to bringing my IV's into my room one at a time now. Apparently they don't like the idea of me changing them myself. Sheesh.. I'd do everything if I could!
Heart rate is quite elevated. It was still pounding at 124bpm about ten minutes after climbing the stairs this morning returning from breakfast. I'm on the second floor (ground, 1st, 2nd) so it's a bit of a hike. I had the same thing last cycle.. it will improve tomorrow.. Just the steroids waning. My haemoglobin and Red cell counts are OK-ish, so it's not because of a lack of oxygen to my muscles.
When I first started treatment back in 2005 I made a promise to myself that I would never use a lift, always the stairs. It's days like today that I rue the decision to have ever made such a resolution! It was all part of my plan to not accept the disease. It was not going to make me an invalid. Taking the lift is for sick people. I'm not unwell, I'm just going through a bumpy patch! honest! :)
I'll pop outside shortly... see if I can't walk up the path to the main road. Should be good for a laugh if nothing else! I haven't so much as looked out the front door since last Sunday. I'm thinking if I can manage it, I'll head for the gas station and grab a packet of peanut M&M's. I think I've earned them..
4PM: Odd.. I managed to get about 100M down the road and my heart started pounding. I felt like I'd just sprinted the whole way. I genuinely felt worried that I'd be stuck on the side of the road having some sort of turn. I decided to ignore it. Not much I could do.. and besides turning back meant going up hill. I paced myself a little slower and I was fine. It actually felt really good!. Like I was burning some of the toxins out of my system. I managed to walk for just on an hour.. so maybe four or five Km's. I picked up those M&M's too!.
Oh..BTW.. tummy is all good now.. I'm sure you wanted to hear that.
Sunday, September 21, 2008
Day 7: Chemo Two. Bugger!
It's a bit of a weird day today, I had planned to get outside for a while and get some exercise.
However my digestive system has made other plans for me. The steroids really knock it around, and like last time it has completely stopped functioning. I can't even eat any more food, my stomach feels like It's carrying a brick around. Anyway.. TMI.. but I can't get out for a walk because it would be just my luck that one of the many medications I've taken decides to kick in at the least convenient moment.
I had really high hopes of getting through this cycle with no platelet support. My count this morning was still a healthy (for me) 97, and as of this evening they are 78. However my white cells are plummeting. Dropping by the hour.. they were 2.3 this morning and are now 1.7. (normal is around 6+)
I suggested to the Doctors that we start GCSF support for the white counts this morning, but they wanted to hold off. I said I was not keen on Neumega just yet. Dr Glonti has prescribed both tonight. I can see why.. he doesn't want to miss the window if the platelets go too low.
There goes any chance of direct comparison on the Goji effect. However the numbers still show my counts are well up on last time. Ultimately it's more important to get through this as safely as possible. I just like a challenge ;)
I'm hoping that this will be the last day I spend stuck in this room.. Unless they put me into isolation tomorrow... hope not. Need to get out and exercise both the body and mind.
Till then... Ron
However my digestive system has made other plans for me. The steroids really knock it around, and like last time it has completely stopped functioning. I can't even eat any more food, my stomach feels like It's carrying a brick around. Anyway.. TMI.. but I can't get out for a walk because it would be just my luck that one of the many medications I've taken decides to kick in at the least convenient moment.
I had really high hopes of getting through this cycle with no platelet support. My count this morning was still a healthy (for me) 97, and as of this evening they are 78. However my white cells are plummeting. Dropping by the hour.. they were 2.3 this morning and are now 1.7. (normal is around 6+)
I suggested to the Doctors that we start GCSF support for the white counts this morning, but they wanted to hold off. I said I was not keen on Neumega just yet. Dr Glonti has prescribed both tonight. I can see why.. he doesn't want to miss the window if the platelets go too low.
There goes any chance of direct comparison on the Goji effect. However the numbers still show my counts are well up on last time. Ultimately it's more important to get through this as safely as possible. I just like a challenge ;)
I'm hoping that this will be the last day I spend stuck in this room.. Unless they put me into isolation tomorrow... hope not. Need to get out and exercise both the body and mind.
Till then... Ron
Friday, September 19, 2008
Day 6: Chemo two
Sorry for the boring post titles.. It's all part of my attempt to better document things. You never know, perhaps one day it may be of help to someone going through the same treatment. (If you happen to be that person, I wish you all the best!)
What's your math like? Here's a spot quiz..
Q:If a man weighs himself at 74.5Kg before going to bed and when he awakes in the morning his weight has dropped to 69Kg. How much sleep did he get?
A: Not very much!!
They say what goes in, must come out, and after taking on around 10 litres of IV fluids in the past 36 hours, my kidneys feel like they have been washed, scrubbed and hung out to dry!.
Natalie just took some blood for testing, she should be back shortly with a copy of the print-out.
At this point last cycle my platelets were at 85. Down from 135, six days earlier. That was a 37% drop. So will be interesting to compare.
I feel a lot better today, so far anyway. Not having an extra 5 1/2 litres of fluid washing around in your blood stream and body probably accounts for most of that I'd say.
Thanks for all the feedback you've all been posting. I'd like to reply to each one as they get posted but as the feedback listings aren't always obvious, I figure most would miss their reply anyway.
However I would like to point out to 'Shrek' that I've spent years working on my 'Chicken Legs' and they they have been honed into finely tuned apparatus, designed for out-running large green Ogres!.
As for the burglars. well I'd like to install cameras everywhere... but then you get into that siege mentality.. I think a few well placed flood lights might help.
OK.. Blood counts are in! .. How does 111 sound! Pretty good huh! That's only a 2.5% drop.
So far so good. Lets see what Sunday's count brings as that will be the real test.
I should point out that WBC is down at 3.8, but GCSF can fix that if it gets too much lower. Platelet count is the best indication of bone marrow survival. It's the canary in the coalmine. So far the bird's still singing.
What's your math like? Here's a spot quiz..
Q:If a man weighs himself at 74.5Kg before going to bed and when he awakes in the morning his weight has dropped to 69Kg. How much sleep did he get?
A: Not very much!!
They say what goes in, must come out, and after taking on around 10 litres of IV fluids in the past 36 hours, my kidneys feel like they have been washed, scrubbed and hung out to dry!.
Natalie just took some blood for testing, she should be back shortly with a copy of the print-out.
At this point last cycle my platelets were at 85. Down from 135, six days earlier. That was a 37% drop. So will be interesting to compare.
I feel a lot better today, so far anyway. Not having an extra 5 1/2 litres of fluid washing around in your blood stream and body probably accounts for most of that I'd say.
Thanks for all the feedback you've all been posting. I'd like to reply to each one as they get posted but as the feedback listings aren't always obvious, I figure most would miss their reply anyway.
However I would like to point out to 'Shrek' that I've spent years working on my 'Chicken Legs' and they they have been honed into finely tuned apparatus, designed for out-running large green Ogres!.
As for the burglars. well I'd like to install cameras everywhere... but then you get into that siege mentality.. I think a few well placed flood lights might help.
OK.. Blood counts are in! .. How does 111 sound! Pretty good huh! That's only a 2.5% drop.
So far so good. Lets see what Sunday's count brings as that will be the real test.
I should point out that WBC is down at 3.8, but GCSF can fix that if it gets too much lower. Platelet count is the best indication of bone marrow survival. It's the canary in the coalmine. So far the bird's still singing.
Thursday, September 18, 2008
Day 5: Cycle Two
Well that's all of the chemo drugs out of the way. I managed to push the last bottle of fluids into myself by 11pm last night. I've got five small bottles to get through today, no chemo drugs... just 'infusions' of vitamins, liver cleansers etc.. I've taken to changing the bottles myself, it saves time and I don't have to phone the nurses every hour or so to do something that's pretty straight forward. I think they appreciate it too. (The doctors don't though, Dr D wasn't happy when I mentioned it, but I always check with the nurses on flow rates and the correct order. Apparently if I had a central line fitted it could cause problems... but as Dr D failed on that count, it's not exactly a concern.)
I feel okish. The term "Gluggy" best describes it. Not really all that sick, but off colour. Certainly not the the 'green around the gills, room spinning' sort of thing that most people get. I count my blessings on that front.
I've been told by one of the nurses that the Neumega arrived yesterday. A 17 day supply.
I'm still not sure what to do there... I've suggested to the Dr's that we start it after the counts come in tomorrow and Sunday. However I'm guessing that now they have purchased about $8K worth of the drug, they are going to be pushing me pretty hard to start on it. Despite it being nearly one month late in arriving. Personally I believe that if I can achieve platelet counts above 30 then I'd not bother. It's more important to keep the White Blood Count up using GCSF.
A low WBC leaves me open to rampant infection and precludes air travel home.
I heard that it is possible that Neumega can suppress WBC production in the marrow.. whether that's true I don't know.. Funny how medicine isn't an exact science.. for every study there are a dozen others to contradict it. (I see this week they are telling us coffee is good for you.. again.)
Bela the physiotherapist just stopped by, I've organised a 2pm massage. I'll follow that up with some time in the gym. Sitting here at this table typing away all day really does nothing for my posture and muscle tone. I was really surprised at how much better I felt in the chest, arms and shoulders after Tuesday's effort.
Some low-life scum tried to break into the Total Performance workshop again last night. Man that gets me wound up! They tried to jimmy the door off it's frame. Failed.
But had they succeeded and stolen anything, gotten to my race car... I can't imagine the stress I'd be under right now. Unable to do anything from so far away. It's an awful feeling just thinking about the fact the vermin are out their planning there next attempt. grrr! Luckily I have Murray and Kurt to take care of the temporary repairs. Thanks guys.
Haven't had my meeting with Dr D today yet. Not expecting any surprises. Oh I hear him outside the door... lets wait and see what he has to say, before I sign off....
Oh good... nothing new.. Told him I'm all good, and nothing to worry about at at this point in time. I reinforced my plan to wait for blood count results tomorrow and Sunday before proceeding in any one direction. I just made sure we were both saying "yes" all the time and that way he's goes away totally happy.
OK, that's all for another 24 hours. Maybe tomorrow I'll get outside for a while if the 'post steroid come-down' is not too vicious.
I feel okish. The term "Gluggy" best describes it. Not really all that sick, but off colour. Certainly not the the 'green around the gills, room spinning' sort of thing that most people get. I count my blessings on that front.
I've been told by one of the nurses that the Neumega arrived yesterday. A 17 day supply.
I'm still not sure what to do there... I've suggested to the Dr's that we start it after the counts come in tomorrow and Sunday. However I'm guessing that now they have purchased about $8K worth of the drug, they are going to be pushing me pretty hard to start on it. Despite it being nearly one month late in arriving. Personally I believe that if I can achieve platelet counts above 30 then I'd not bother. It's more important to keep the White Blood Count up using GCSF.
A low WBC leaves me open to rampant infection and precludes air travel home.
I heard that it is possible that Neumega can suppress WBC production in the marrow.. whether that's true I don't know.. Funny how medicine isn't an exact science.. for every study there are a dozen others to contradict it. (I see this week they are telling us coffee is good for you.. again.)
Bela the physiotherapist just stopped by, I've organised a 2pm massage. I'll follow that up with some time in the gym. Sitting here at this table typing away all day really does nothing for my posture and muscle tone. I was really surprised at how much better I felt in the chest, arms and shoulders after Tuesday's effort.
Some low-life scum tried to break into the Total Performance workshop again last night. Man that gets me wound up! They tried to jimmy the door off it's frame. Failed.
But had they succeeded and stolen anything, gotten to my race car... I can't imagine the stress I'd be under right now. Unable to do anything from so far away. It's an awful feeling just thinking about the fact the vermin are out their planning there next attempt. grrr! Luckily I have Murray and Kurt to take care of the temporary repairs. Thanks guys.
Haven't had my meeting with Dr D today yet. Not expecting any surprises. Oh I hear him outside the door... lets wait and see what he has to say, before I sign off....
Oh good... nothing new.. Told him I'm all good, and nothing to worry about at at this point in time. I reinforced my plan to wait for blood count results tomorrow and Sunday before proceeding in any one direction. I just made sure we were both saying "yes" all the time and that way he's goes away totally happy.
OK, that's all for another 24 hours. Maybe tomorrow I'll get outside for a while if the 'post steroid come-down' is not too vicious.
Wednesday, September 17, 2008
Morning of day four.
The IV drips just keep coming.. It was late last night before the final saline flush was complete. I was woken by nurse Francesca at 2:20am as she tried to quietly sneak into my room to remove the lines. She's awesome, always a bright cheery smile and asking if there is anything I want or need. Earlier in the night I had phoned Biljana to tell her that my saline bottle needed to be changed. After about twenty minutes I figured she had forgotten, so changed it myself. About thirty minutes later she came running in saying "I sorry, I sorry, I sorry" I just laughed.. she had forgotten purely because she was so busy. Her punishment was to take my empty dinner tray back to the kitchen... Never waste an opportunity to give the guilt ridden the chance to redeem themselves I say.. ;)
This morning nurse Natalie arrived with eight new bottles of various things. It's the last day of chemo oriented IV's so that's good. The last Dex steroid, four bottles of infusions and three litres of saline to flush the kidneys.
I sprang a leak earlier, basically blew out the needle in my wrist.. too much pressure I'd say.
We were running two lines into one needle and it all got too much for it.. and fluid was running back around the sides of the needle through the skin and dripping on the floor.
Dr Glonti has put another line into the back of my hand and it seems to be flowing well.
Typing is a bit awkward though, cant bend my fingers without making the vein pop up.. the needle is flexible so it's not like it will suddenly emerge out the back of my hand.. but it looks creepy.
Dr G is pushing for me to have a 'port' put in my chest. This is what I wanted at the beginning, but they tried opting for a central line, and we all know how that worked out!. So now I'm a bit over the whole idea of having hollow wires and tubes inserted into my body. I don't think I'll go down that path unless we run of veins in my arms.. which considering we are now onto the few remaining veins on the back of my right hand.. might not be too far away.. sigh.
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This morning nurse Natalie arrived with eight new bottles of various things. It's the last day of chemo oriented IV's so that's good. The last Dex steroid, four bottles of infusions and three litres of saline to flush the kidneys.
I sprang a leak earlier, basically blew out the needle in my wrist.. too much pressure I'd say.
We were running two lines into one needle and it all got too much for it.. and fluid was running back around the sides of the needle through the skin and dripping on the floor.
Dr Glonti has put another line into the back of my hand and it seems to be flowing well.
Typing is a bit awkward though, cant bend my fingers without making the vein pop up.. the needle is flexible so it's not like it will suddenly emerge out the back of my hand.. but it looks creepy.
Dr G is pushing for me to have a 'port' put in my chest. This is what I wanted at the beginning, but they tried opting for a central line, and we all know how that worked out!. So now I'm a bit over the whole idea of having hollow wires and tubes inserted into my body. I don't think I'll go down that path unless we run of veins in my arms.. which considering we are now onto the few remaining veins on the back of my right hand.. might not be too far away.. sigh.
.JPG)
Day three. Up and down.
Gosh where do I start? Today's another big IV push day. Have had five small IV's already and I have three liters of saline waiting to flush it all out over the next 8 hours or so.
The last of the Cytarabine went in last night, and tomorrow see's the last of the Dexamethasone.
It's the Dex that has the most affect on how I feel. It's an industrial strength steroid. One minute I'm up and feeling like I can do anything and the next, like now, I feel flat.
Guess what! There's no sign of the Neumega.. just as I predicted. I'm not too concerned as this gives me an excellent opportunity to do a direct comparison of blood counts, without Goji, versus with Goji. My nadir is still about seven days away so we can compare the counts as they drop over the coming days and if it's looking like it's going to bottom out like last time we can still take action with platelet transfusions etc.. perhaps Neumega will magically appear.. who knows.
I had a massage after lunch from Bela, and from there I popped down to the gym and did a few basic exercises to build up my arms and shoulders as they have lost a lot of condition. Felt good too! I'll try and get down there everyday if only for twenty minutes or so.
Another bit of good news is my weight, it's up to 75kg's. This means that it's no longer being held back by Hodgkin's, so another positive sign. Those of you that saw me looking gaunt and sickly after radiation treatment, and may well be expecting to see me in a few weeks looking hairless and thin are in for a surprise.. I've gained weight and lost none of my hair.. in fact it's growing quite well now . I'll be returning looking a lot healthier than when I left!
Talking about healthy things.. I've been looking on Google Earth for the nearest McDonalds, and I've found one in Bad Tolz! It's in the new part of the town, a place I have so far not ventured to.
Yeah I know I shouldn't.. but heck It will be sooo good to taste familiar food again.. a Big Mac and a choc shake... hmmm... just hope there's no salt or ham anywhere near it!
I've also raided the DVD selection that they have here, I've seen almost all of them, but have 'backed up' a couple of them to watch again on my DVR or Laptop over the next few days.
I met some new people this morning at breakfast, Rhonda is here supporting her 34 y/o son Ryan. She joined me at my table so we didn't have to shout across the restaurant. I gave her a brief version of my case history (That's still a twenty minute monologue) and then we were joined by Eleanor. She's back for more treatment. I was on a steroid high at about that time of the morning and it's amazing how sharp your mind becomes. The complete opposite of the 'chemo-brain' that follows treatment and can last for months. Anyway both of them started asking me questions about drugs, treatments.. all sorts of things.. and you know what? I had all the answers! They just poured out of me.. all those hundreds of hours of reading that I thought I'd forgotten, all there. Amazing!. such a shame that once off the steroids life becomes hell for a couple of days as I go cold Turkey.
The other people I met was Emilio and his wife, also Americans. I have yet to have a decent conversation with them, but I'm sure that will occur in time. We just introduced ourselves briefly as our paths crossed leaving the restaurant.
I had my daily meeting with Dr D, that went well as I was still on the steroid high, I pretty much told him what we should do from here. I asked him for calcium to offset the bone loss from the Dexamethasone, a couple of things for my digestive system, which has yet again shut down.
I said I was not too concerned about the Neumega and explained why. I said I'd like to review where we were at blood count-wise on Sunday. If the counts are still heading down then we shall look at GCSF and Neumega. I wonder what it's like for them having a patient that can talk on their level. It must be good in that they don't have to dumb everything down, but then they also know that they have to get their facts right or risk being caught out. I remember there were mentions of this on my file back in Wgtn. They probably think I'm a pain in the neck :) Good!
Oh one thing that did get me worried.. not treatment related.. was Dr D asked about how I found my time in the thermotherapy chamber yesterday. He then started to say something along the lines of enjoying my time with Dr G.. but stopped. I'm starting to think maybe he's read my blog! All those posts about "hot dates"... maybe my humour was lost in translation ...maybe he thinks I enjoy it ...maybe I'm paranoid...
The last of the Cytarabine went in last night, and tomorrow see's the last of the Dexamethasone.
It's the Dex that has the most affect on how I feel. It's an industrial strength steroid. One minute I'm up and feeling like I can do anything and the next, like now, I feel flat.
Guess what! There's no sign of the Neumega.. just as I predicted. I'm not too concerned as this gives me an excellent opportunity to do a direct comparison of blood counts, without Goji, versus with Goji. My nadir is still about seven days away so we can compare the counts as they drop over the coming days and if it's looking like it's going to bottom out like last time we can still take action with platelet transfusions etc.. perhaps Neumega will magically appear.. who knows.
I had a massage after lunch from Bela, and from there I popped down to the gym and did a few basic exercises to build up my arms and shoulders as they have lost a lot of condition. Felt good too! I'll try and get down there everyday if only for twenty minutes or so.
Another bit of good news is my weight, it's up to 75kg's. This means that it's no longer being held back by Hodgkin's, so another positive sign. Those of you that saw me looking gaunt and sickly after radiation treatment, and may well be expecting to see me in a few weeks looking hairless and thin are in for a surprise.. I've gained weight and lost none of my hair.. in fact it's growing quite well now . I'll be returning looking a lot healthier than when I left!
Talking about healthy things.. I've been looking on Google Earth for the nearest McDonalds, and I've found one in Bad Tolz! It's in the new part of the town, a place I have so far not ventured to.
Yeah I know I shouldn't.. but heck It will be sooo good to taste familiar food again.. a Big Mac and a choc shake... hmmm... just hope there's no salt or ham anywhere near it!
I've also raided the DVD selection that they have here, I've seen almost all of them, but have 'backed up' a couple of them to watch again on my DVR or Laptop over the next few days.
I met some new people this morning at breakfast, Rhonda is here supporting her 34 y/o son Ryan. She joined me at my table so we didn't have to shout across the restaurant. I gave her a brief version of my case history (That's still a twenty minute monologue) and then we were joined by Eleanor. She's back for more treatment. I was on a steroid high at about that time of the morning and it's amazing how sharp your mind becomes. The complete opposite of the 'chemo-brain' that follows treatment and can last for months. Anyway both of them started asking me questions about drugs, treatments.. all sorts of things.. and you know what? I had all the answers! They just poured out of me.. all those hundreds of hours of reading that I thought I'd forgotten, all there. Amazing!. such a shame that once off the steroids life becomes hell for a couple of days as I go cold Turkey.
The other people I met was Emilio and his wife, also Americans. I have yet to have a decent conversation with them, but I'm sure that will occur in time. We just introduced ourselves briefly as our paths crossed leaving the restaurant.
I had my daily meeting with Dr D, that went well as I was still on the steroid high, I pretty much told him what we should do from here. I asked him for calcium to offset the bone loss from the Dexamethasone, a couple of things for my digestive system, which has yet again shut down.
I said I was not too concerned about the Neumega and explained why. I said I'd like to review where we were at blood count-wise on Sunday. If the counts are still heading down then we shall look at GCSF and Neumega. I wonder what it's like for them having a patient that can talk on their level. It must be good in that they don't have to dumb everything down, but then they also know that they have to get their facts right or risk being caught out. I remember there were mentions of this on my file back in Wgtn. They probably think I'm a pain in the neck :) Good!
Oh one thing that did get me worried.. not treatment related.. was Dr D asked about how I found my time in the thermotherapy chamber yesterday. He then started to say something along the lines of enjoying my time with Dr G.. but stopped. I'm starting to think maybe he's read my blog! All those posts about "hot dates"... maybe my humour was lost in translation ...maybe he thinks I enjoy it ...maybe I'm paranoid...
Tuesday, September 16, 2008
Spanky Spangler: Stuntman Extraordinaire!!
Just when I had completely given up on German television and believed it to be a veritable desert of mind numbingly boring shows from the 80's, my faith in the value of trash TV has been restored!.
It was during a quick search of this video wasteland last night, that I found a little gem of a show. I was first caused to stop flicking rapidly through the channels by the sight of a rather interesting young lady sitting on a box, in a studio, wearing what looked like a miniature silk Kimono and not much else. A slow refocus revealed the set was decorated with various pictures of burning cars, crashed quads and the like. Aaaah ..'obviously a show aimed at the brain dead male audience' I thought to myself. Since I now fall into that category, and I didn't want to disappoint the bean counters, I decided to join their target market. (Of course purely for research purposes..)
If any of you have seen that Iconic Kiwi stunt movie "The Devil Dared Me To" in which stuntman Randy Campbell's stunts always go wrong. You'll have loved this show!
Difference was this was no movie, it was masquerading as a doco. However I chose to view it as a comedy, as the running gag was much the same, with all the stunts going horribly wrong!
First up was Spanky Spangler, that All American Pro Stuntman. We watched as he attemped to destroy a car by blowing it up while jumping it through the air. Unfortunately lacking the necessary skills to actually drive straight, he hit he ramp at an angle that even a half blind, sherry-soaked, octagenarian grandmother could not have achieved. One of the front wheels dropped off the launch ramp and sent him spiralling away in the wrong direction... Not towards his chosen soft landing in a sea of parked cars. But upside-down into a not-so-soft, empty concrete car-park, Landing on his roof and no doubt his head, no harm done there I'm guessing.
No serious "When Stunts Go Wrong" show worth it's salt would be complete without a Knievel in it's line-up, and I wasn't to be disappointed.. "Robbie "Kaptain" Knievel" was shown being tossed around like a rag doll when the front wheel on his motorcycle was torn off as he landed at the end of a monster two-wheeled, and soon to be one-wheeled, jumping effort.
Now this is what true trash television is all about!. I was glued for well over an hour. I particularly like the footage of the guy who decided it was a good idea to ski 4000ft down a near vertical mountain on his head, he managed to pull if quite convincingly too! Still can't figure out why he was wearing the skis on his feet though.?
The whole thing was dubbed into German of course, but if I mentally blocked it out, I could just hear in the background the anguished screams and four letter expletives during each and every bone crushing smash. Amazing stuff! and to think these guys do it just so people like me stuck in hospital can have something to keep them amused! (I wonder what stuntmen watch when they are in hospital?)
I'm going to tune in tonight and see what else is on offer! I'm hoping for something like.. "When Animals Attack: Tourists on the Menu", Or something equally as entertaining.
..Goodnight! Drive safely now!
It was during a quick search of this video wasteland last night, that I found a little gem of a show. I was first caused to stop flicking rapidly through the channels by the sight of a rather interesting young lady sitting on a box, in a studio, wearing what looked like a miniature silk Kimono and not much else. A slow refocus revealed the set was decorated with various pictures of burning cars, crashed quads and the like. Aaaah ..'obviously a show aimed at the brain dead male audience' I thought to myself. Since I now fall into that category, and I didn't want to disappoint the bean counters, I decided to join their target market. (Of course purely for research purposes..)
If any of you have seen that Iconic Kiwi stunt movie "The Devil Dared Me To" in which stuntman Randy Campbell's stunts always go wrong. You'll have loved this show!
Difference was this was no movie, it was masquerading as a doco. However I chose to view it as a comedy, as the running gag was much the same, with all the stunts going horribly wrong!
First up was Spanky Spangler, that All American Pro Stuntman. We watched as he attemped to destroy a car by blowing it up while jumping it through the air. Unfortunately lacking the necessary skills to actually drive straight, he hit he ramp at an angle that even a half blind, sherry-soaked, octagenarian grandmother could not have achieved. One of the front wheels dropped off the launch ramp and sent him spiralling away in the wrong direction... Not towards his chosen soft landing in a sea of parked cars. But upside-down into a not-so-soft, empty concrete car-park, Landing on his roof and no doubt his head, no harm done there I'm guessing.
No serious "When Stunts Go Wrong" show worth it's salt would be complete without a Knievel in it's line-up, and I wasn't to be disappointed.. "Robbie "Kaptain" Knievel" was shown being tossed around like a rag doll when the front wheel on his motorcycle was torn off as he landed at the end of a monster two-wheeled, and soon to be one-wheeled, jumping effort.
Now this is what true trash television is all about!. I was glued for well over an hour. I particularly like the footage of the guy who decided it was a good idea to ski 4000ft down a near vertical mountain on his head, he managed to pull if quite convincingly too! Still can't figure out why he was wearing the skis on his feet though.?
The whole thing was dubbed into German of course, but if I mentally blocked it out, I could just hear in the background the anguished screams and four letter expletives during each and every bone crushing smash. Amazing stuff! and to think these guys do it just so people like me stuck in hospital can have something to keep them amused! (I wonder what stuntmen watch when they are in hospital?)
I'm going to tune in tonight and see what else is on offer! I'm hoping for something like.. "When Animals Attack: Tourists on the Menu", Or something equally as entertaining.
..Goodnight! Drive safely now!
Day two of cycle two chemo.
The IV drip stayed in all last night, finishing about the same time I woke at 7:0am. (Yeah I know that's not exactly early.. but it feels like it is when you are in hospital.)
I grabbed a decent breakfast and then it was straight back into the Chemo. I spent nearly the whole morning remotely working on my computer back at Total Performance, doing invoicing and paying bills.
I had the usual morning meeting in my room with Dr D and we covered a lot of things. He's becoming a lot easier to talk to now that he's getting used to my kiwi accent. Yesterday we covered subjects as diverse as the depth of the Cook Strait, earthquakes and the English language. All this while he was inserting a central line under my skin instead of inside a vein.. (I should not have distracted him perhaps!)
Today we talked about my treatment. I explained that I needed to leave by 29th Sept as I wanted to be back at work for the new month. (I didn't tell him that I was missing Sarah, friends and family and I just want out of here!) However there is a large element of truth in the statement about work. I was supposed to be here 3-4 weeks for high dose chemo and a bone marrow transplant, but that was changed to salvage chemo after reviewing my case notes. The net result is I will have been here seven weeks by the time I leave. I've drawn no income for the entire time and I've got some huge bills to pay.
I asked if it was OK to take Ginkgo Biloba capsules while on chemo and he said it was. He even recommended it. This is good because it's the only thing listed anywhere that is known to help reduce the tinnitus (ringing in my ears) brought about by the chemo I had last cycle. I don't know if it will prevent further damage from this second cycle of chemo but I'm going to take it anyway. The change of drugs was to prevent any further damage so I should be OK. Apparently 35% of people report a reduction in severity of their tinnitus when Ginkgo is taken for 70 days or more.
I got that call I always dread again today. Dr Glonti wanted me down in his Thermotherapy cave.
This was the forth time I've had the treatment and the three previous times I've suffered badly from a pinched nerve in my neck that causes severe pain in my left shoulder and arm. It's aggravated by having my neck at a certain angle. Today the pain was so bad I lifted my head off the bed in the hope of finding a 'sweet spot' that would unload the offending vertebrae that was causing it. Presto! found it! instant removal of pain, like flicking a switch from 'pain' to 'no-pain'.
I asked Dr G to slide another towel under my neck, and all in the world was good again. But then without the pain in my shoulder to distract me, I suddenly realised just how hot it was! Bugger! out of the frying pan into the fire.. literally.
I asked Dr G what the benefits of thermotherapy was with regards to chemotherapy and he said that "it makes the chemo work better". "Do you mean it potentiates the treatment?" I asked. There was a silence. "Makes it more potent" I added. "yes, yes, potentiate" he replied. I think I taught the doctor a new word, or at least helped him dredge it up from some dusty corner. How many words must there be rattling around in the head of a man that speaks four languages!! The brain is an amazing thing.. hunting out the right words from a vocbaulary of hundreds of thousands in micro seconds.
There are so many new faces here, Annette, Monica, Merlina.. all nurses that have returned from holiday. Then there's Fredrika back from Croatia, and not to mention Dr Drasynski.
I had a really long chat with nurse Natalie this morning. She speaks English very well and seems to enjoy a break from work. We covered the history of this klinik, how a few years ago all forty five rooms would be full all the time with the rich and the famous. This was because of the original owner who was a bit of a socialite and mixed and mingled in the right circles. He died of a heart attack in 2005 during a seminar in Las Vegas. Since that time things have slowed, the prices have stayed the same.. still aimed at the rich. Such a shame because so many more people could benefit from the care they offer if they could only afford it. In my case cost was not an issue, purely for the reason you can't put a figure on your own life. Doesn't stop me wanting to leave first chance I get though!
I'm over these drips.. the line keeps blocking up, and my arm is hurting where the veins are inflamed. It feels like a tight tendon, but it's the vein. Yuk. ..Wish that central line op had been successful!.
I have something going in the line now to correct the PH level of my urine, then I have two salines followed by those horrible steroids at about 8pm. Whatever is in the PH fixer, it stings like mad. Grrr..
OK that's enough outpouring for one afternoon..
I grabbed a decent breakfast and then it was straight back into the Chemo. I spent nearly the whole morning remotely working on my computer back at Total Performance, doing invoicing and paying bills.
I had the usual morning meeting in my room with Dr D and we covered a lot of things. He's becoming a lot easier to talk to now that he's getting used to my kiwi accent. Yesterday we covered subjects as diverse as the depth of the Cook Strait, earthquakes and the English language. All this while he was inserting a central line under my skin instead of inside a vein.. (I should not have distracted him perhaps!)
Today we talked about my treatment. I explained that I needed to leave by 29th Sept as I wanted to be back at work for the new month. (I didn't tell him that I was missing Sarah, friends and family and I just want out of here!) However there is a large element of truth in the statement about work. I was supposed to be here 3-4 weeks for high dose chemo and a bone marrow transplant, but that was changed to salvage chemo after reviewing my case notes. The net result is I will have been here seven weeks by the time I leave. I've drawn no income for the entire time and I've got some huge bills to pay.
I asked if it was OK to take Ginkgo Biloba capsules while on chemo and he said it was. He even recommended it. This is good because it's the only thing listed anywhere that is known to help reduce the tinnitus (ringing in my ears) brought about by the chemo I had last cycle. I don't know if it will prevent further damage from this second cycle of chemo but I'm going to take it anyway. The change of drugs was to prevent any further damage so I should be OK. Apparently 35% of people report a reduction in severity of their tinnitus when Ginkgo is taken for 70 days or more.
I got that call I always dread again today. Dr Glonti wanted me down in his Thermotherapy cave.
This was the forth time I've had the treatment and the three previous times I've suffered badly from a pinched nerve in my neck that causes severe pain in my left shoulder and arm. It's aggravated by having my neck at a certain angle. Today the pain was so bad I lifted my head off the bed in the hope of finding a 'sweet spot' that would unload the offending vertebrae that was causing it. Presto! found it! instant removal of pain, like flicking a switch from 'pain' to 'no-pain'.
I asked Dr G to slide another towel under my neck, and all in the world was good again. But then without the pain in my shoulder to distract me, I suddenly realised just how hot it was! Bugger! out of the frying pan into the fire.. literally.
I asked Dr G what the benefits of thermotherapy was with regards to chemotherapy and he said that "it makes the chemo work better". "Do you mean it potentiates the treatment?" I asked. There was a silence. "Makes it more potent" I added. "yes, yes, potentiate" he replied. I think I taught the doctor a new word, or at least helped him dredge it up from some dusty corner. How many words must there be rattling around in the head of a man that speaks four languages!! The brain is an amazing thing.. hunting out the right words from a vocbaulary of hundreds of thousands in micro seconds.
There are so many new faces here, Annette, Monica, Merlina.. all nurses that have returned from holiday. Then there's Fredrika back from Croatia, and not to mention Dr Drasynski.
I had a really long chat with nurse Natalie this morning. She speaks English very well and seems to enjoy a break from work. We covered the history of this klinik, how a few years ago all forty five rooms would be full all the time with the rich and the famous. This was because of the original owner who was a bit of a socialite and mixed and mingled in the right circles. He died of a heart attack in 2005 during a seminar in Las Vegas. Since that time things have slowed, the prices have stayed the same.. still aimed at the rich. Such a shame because so many more people could benefit from the care they offer if they could only afford it. In my case cost was not an issue, purely for the reason you can't put a figure on your own life. Doesn't stop me wanting to leave first chance I get though!
I'm over these drips.. the line keeps blocking up, and my arm is hurting where the veins are inflamed. It feels like a tight tendon, but it's the vein. Yuk. ..Wish that central line op had been successful!.
I have something going in the line now to correct the PH level of my urine, then I have two salines followed by those horrible steroids at about 8pm. Whatever is in the PH fixer, it stings like mad. Grrr..
OK that's enough outpouring for one afternoon..
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