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.
Tuesday, September 23, 2008
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
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