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.
Friday, September 19, 2008
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..
Monday, September 15, 2008
Yuk! (Updated)
I was phoned my Nurse Biljana and asked to come downstairs to have a central line installed in my arm. This is different than the tiny cannulas I had last time. It's a long hollow wire that is about 450mm in length. It is inserted into the arm and winds it's way all the way to your chest area where it resides in the central vein that returns blood to the heart. Dr Drasynski performed the operation with Biljana assisting. He used a local anesthetic to numb the area he was going to insert the wire into. Basically the inside of my left elbow, same place you get your blood tests done.
He pushed the large outer plastic sheaf into my arm and then inserted the wire, rotating it as he slowly pushed it in. It felt uncomfortable, but i just figured it was supposed to. He seemed to be having some difficulty getting the wire to work its way along the vein. Eventually I got a stinging pain in my bicep and told them so. He then injected some saline into the hollow wire and a section of skin on my bicep bulged out. Oops! the wire was not actually going inside the vein at all. He withdrew it and massaged the saline down my arm until it bubbled out of the small incision.
He has given up on putting in a central line, saying my veins are too small and fibrous from previous chemo. So it's back to the cannula in my wrist.
Right now I'm typing with one hand, as there are two tubes going into my right wrist and it's too awkward to type with it. I'm presently getting the steroids and some saline. I have to supply a urine sample before the carboplatin can be administered. I'm working on it.
More updates later... man my arm's gonna hurt tomorrow!!!
9:30pm: I've had the carboplatin, and I'm now on a slow saline drip for the next eight hours. I've had a couple of anti-emetics to stop me throwing up, but to be honest other than looking really pale, I feel pretty good. I'll head off to bed now and try and get some sleep. I have an early start tomorrow as the next chemo drug, Alexan (Cytarabine), needs to be administered approximately twelve hours after carboplatin finishes.. so roughly 8am. I want to get in a decent breakfast first.
He pushed the large outer plastic sheaf into my arm and then inserted the wire, rotating it as he slowly pushed it in. It felt uncomfortable, but i just figured it was supposed to. He seemed to be having some difficulty getting the wire to work its way along the vein. Eventually I got a stinging pain in my bicep and told them so. He then injected some saline into the hollow wire and a section of skin on my bicep bulged out. Oops! the wire was not actually going inside the vein at all. He withdrew it and massaged the saline down my arm until it bubbled out of the small incision.
He has given up on putting in a central line, saying my veins are too small and fibrous from previous chemo. So it's back to the cannula in my wrist.
Right now I'm typing with one hand, as there are two tubes going into my right wrist and it's too awkward to type with it. I'm presently getting the steroids and some saline. I have to supply a urine sample before the carboplatin can be administered. I'm working on it.
More updates later... man my arm's gonna hurt tomorrow!!!
9:30pm: I've had the carboplatin, and I'm now on a slow saline drip for the next eight hours. I've had a couple of anti-emetics to stop me throwing up, but to be honest other than looking really pale, I feel pretty good. I'll head off to bed now and try and get some sleep. I have an early start tomorrow as the next chemo drug, Alexan (Cytarabine), needs to be administered approximately twelve hours after carboplatin finishes.. so roughly 8am. I want to get in a decent breakfast first.
Sunday, September 14, 2008
114: Moving House..
There just has to be something in that Goji juice ! I've been drinking 2x 100ml a day since Friday morning and I just scored a 114 on the platelet test. That's a 20% increase in two days!.
I'm back at the hotel for lunch, can't turn down a pork roast! Then Alexander has offered to drop me at the klinik around two o'clock. From there it's straight into cycle two of chemo.
I was supposed to be getting a fixed catheter installed in either my neck or chest, but Dr D is not qualified to install them. So I'll be having a central line put in my arm to avoid a repeat of the damage to my veins that I suffered last time. The vein in my arm that got all red and painfull a few weeks ago is still very firm and hard in the area of the infection.
There is also a change in one of the chemotherapy drugs too, we are swapping Cisplatin for Carboplatin.
The reason being that it has less side effects and will not cause any further damage to my hearing.
It too is severely myelosuppressive (damaging to bone marrow), and we can expect the same problems with low blood counts as last time, possibly even worse, with all the risks that go with it.
Shall post an update once I'm back in my old room at the klinik, and treatment is under way.
I'm back at the hotel for lunch, can't turn down a pork roast! Then Alexander has offered to drop me at the klinik around two o'clock. From there it's straight into cycle two of chemo.
I was supposed to be getting a fixed catheter installed in either my neck or chest, but Dr D is not qualified to install them. So I'll be having a central line put in my arm to avoid a repeat of the damage to my veins that I suffered last time. The vein in my arm that got all red and painfull a few weeks ago is still very firm and hard in the area of the infection.
There is also a change in one of the chemotherapy drugs too, we are swapping Cisplatin for Carboplatin.
The reason being that it has less side effects and will not cause any further damage to my hearing.
It too is severely myelosuppressive (damaging to bone marrow), and we can expect the same problems with low blood counts as last time, possibly even worse, with all the risks that go with it.
Shall post an update once I'm back in my old room at the klinik, and treatment is under way.
Brass Monkey Weather!
I don't know what's happened to the heat around this place, but I just got back from having dinner at Il Tegamino's and I can't stop shivering. It's so cold, they had the outside tables folded up, the doors to the courtyard were closed shut and the heaters were all on. This time last week Sarah and I sweltered as we ate at the same venue.
A quick check of the weather forecast shows the temperature dropping like a brick. It's supposedly 7C outside right now and it's going to steadily drop to a low of -7C on Tuesday.
I don't think I've ever been anywhere that wasn't the top of a mountain, and felt that sort of cold! I wish I'd packed my thermals.
Had to laugh at the Hawaiian Pizza I had for dinner, there was so much ham on it you couldn't see any of the other ingredients. Just ham and a crust. I took 90% of it off and piled it up in a huge mound on the side of the plate.
Nothing really to offer today other than the weather and Ham reports... Blood test in the morning.. I'm expecting it to be good, but to be told that they want to wait another day or so. I guess we shall see, I'm not holding my breath, and I'm trying not to stress over it.
One thing that did bother me last night was a 'night sweat' I usually get these when my Hodgkin's is active. However I did have a hot bath just before going to bed, so I'll cross my fingers, hope that was the cause and that I don't get a repeat again tonight.
Till tomorrow...
A quick check of the weather forecast shows the temperature dropping like a brick. It's supposedly 7C outside right now and it's going to steadily drop to a low of -7C on Tuesday.
I don't think I've ever been anywhere that wasn't the top of a mountain, and felt that sort of cold! I wish I'd packed my thermals.
Had to laugh at the Hawaiian Pizza I had for dinner, there was so much ham on it you couldn't see any of the other ingredients. Just ham and a crust. I took 90% of it off and piled it up in a huge mound on the side of the plate.
Nothing really to offer today other than the weather and Ham reports... Blood test in the morning.. I'm expecting it to be good, but to be told that they want to wait another day or so. I guess we shall see, I'm not holding my breath, and I'm trying not to stress over it.
One thing that did bother me last night was a 'night sweat' I usually get these when my Hodgkin's is active. However I did have a hot bath just before going to bed, so I'll cross my fingers, hope that was the cause and that I don't get a repeat again tonight.
Till tomorrow...
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