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.

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.

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!

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..

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.

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.

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.

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.

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