On a day that nothing happened..

I almost didn't write an entry in the blog today. Somehow I'd managed to convince myself that we hadn't done anything. Then I started to think of all the things that we'd done without actually considering them as being noteworthy.. before long I'd guilted myself into sharing it all with you.

So share I must.. don't say you weren't warned.. you just might forget you ever read this. (Or wish you had)

Breakfast was like any other in Punxsutawney.. sorry Bad Heilbrunn. I polished off the last of the cornflakes. Apparently that one small serving bowl was supposed to last all week. With my double dipping it only made it to Thursday. Who knows what's in store for tomorrow?

I know that there's still a tiny amount of muesli left over. I would have finished that off too had it not been for the fact that they have chocolate chips in it. Can't quite find the appetite to eat chocolate for breakfast. Necessity may well change that.

Sarah and I needed to plan the rest of our stay, we could not decide whether we wanted to stay here or move to another Hotel in Bad Tolz for a few days. There's more to do there, and a good range of eating establishments. Even a Chinese restaurant and a couple of Pizzerias. Having researched on the Internet all the available Hotels we came to the conclusion that none were any different than where we are currently staying. They all have the same "twin" style of bed. Basically two single beds pushed together, complete with separate duvets. It's like having a sleep-over with friends when you were nine. Physical contact involves one of us crossing the divide and ultimately parts of your anatomy becoming numb from laying in the deep crevasse that runs down the middle. However I would like to clarify that I seldom had physical contact with my sleep-over friends at age nine. Unless you classify Chinese burns and pillow fights as physical contact.

Anyway.. we decided that packing everything up and moving 12Km's down the road for two nights just so we could be closer to somewhere to eat was silly. It's just as easy to catch a bus or a cab, much the same way as you would if you were going from Lower Hutt to Wellington for a night out. So we are staying here until late next week for me, and Tuesday for Sarah, when she flys home.

Tomorrow night we have booked a table for two at the "Magic Fondue" show here at the Hotel!

Yes, what else would one do if they had a penchant for cooking with cheese and prestidigitation? Well, you'd hold twice weekly magic shows for your guests, feed them warm cheese in a bucket, and charge them 30euro a head! What a cunning idea. I look forward to writing a glowing review for you all to read on Saturday.

Having organised the plan for the rest of our stay, we decided to head out for a short walk. Sarah's been getting up early in the mornings and going for a run, so she didn't want to walk too far. I assured her that we would just go out to the lane behind the Leonardis Klinik where we had ventured last week, make a series of right turns and we would eventually come out where we started. It could not be simpler [Sarah knows this theory well, however insisted it wasn't being well implemented].

About an hour into our "short walk" it became apparent that we had gone in a much larger orbit than expected. Sure, we had gone almost a full circle, but we were now completely on the other side of town, confronted with what looked like the beginnings of an autobahn, and a sign that said "Bad Heibrunn" with a large red cross through it . Bugger! We had to turn back and retrace our steps. To say I was not popular would have been a serious understatement. Made worse by my suggestion that a road that appeared to head directly towards home in fact dead ended after about a Kilometer. Again we back-tracked. Finally arriving back at the village over an hour later than planned.

Lunch time! We decided to stop at "The Villa in the Park" cafe for something to eat. The two female staff members sat alone in the cafe eating. We appeared to be the first customers of the day and it was already 1pm. Asked if she spoke English, the girl behind the counter gave the standard reply "a little" and saw us to our chosen table outside in the raised courtyard.

I'd accidentally walked in carrying a bottle of water which I left on our table. The second of the two waitresses, perhaps the manageress, came out and reprimanded me for having the water on the table. She seemed annoyed at having to speak to us in English, and when it came to describing the different choices in pasta, she resorted to pulling her pen apart in order to visually show us the tubular nature of rigatoni. Once we had placed our orders of tomato rigatoni for me and the carbonara version for Sarah, she seemed a lot happier.

Villa in the park cafe.

They don't seem to understand the word "lemonade" in Germany, so far no one has. However "Sprite" would appear to be a universal brand name and instantly recognised, as is Sarah's "Riesling" due to it being German in origin [for the uneducated amoung us], so ordering the drinks didn't involve quite the same level of theatrics.

I finished off my lunch with a large tub of icecream to takeaway, and we headed up the road to Tengelmans for more supplies.

On the way back we came across Pam waiting for the bus to Bad Tolz. We stopped and talked to her until her bus arrived. Pam seemed quite down, she leaves the Klinik tomorrow and returns to Toronto. However she's been told she needs to come back again in October for a month of radiation treatment. She doesn't like or want radiation and it showed. We both really felt for her. I'm not sure why she isn't considering having it done back in Canada, but the both the cost and the treatment seemed to be weighing heavily on her mind. The bus arrived, we said our farewells and we parted ways, probably to never to see her again. I wish her well. She's been a great buddy these last few weeks.

From there we walked to the information centre for advice on where to locate an Italian restaurant that we had been told about but could not find. Once again the man behind the counter gave the standard response when asked if he spoke English, two fingers held closely together followed by the words... "just a little". We asked him where the Italian restaurant was and he gave us instructions in perfect English along with marking it's position on a map. He couldn't resist the temptation of gibing us for wanting Italian food in Bavaria.. I told him I'd been here for a month.. I could have said more... that the food was inedible... vegetables I couldn't identify... things I've never even heard of let alone considered eating... but I resisted the urge. Happy in the knowledge that Pizza was now on the menu.

That's about it really.. another day in limbo... have you forgotten any of it yet?

Don't worry if you have, there's more of the same tomorrow.

Night.. Ron

If it wasn't funny you'd cry.

I woke this morning to discover my lips were all but glued together. You'd think by now I would have learnt that I can't have antibiotics without developing mouth ulcers and oral thrush. I even have the medication for it, given to me by the Klinik. My tongue has gone white and looks like a relief map of Tonga.. little islands of raw pink flesh in a sea of white fur. Gross! The inside of my top lip has about five ulcers on it. They sting like mad and are seriously affecting the enjoyment of my new found addiction to pickled gherkins and cheese.

We went downstairs for breakfast where-upon I devoured two thimbles of cornflakes, flinching with each tiny mouth-full. I then had two shot glasses of my Goji juice, which the hotel staff kindly bring out to me each morning from the fridge in which they store it. Now that stuff really burns!.. like tomato juice only more acidic.
I still credit it with my rise in platelets. If only someone did a definitive test on it. Either way I'm not going to stop taking it. The alternative is Neumega injections costing about the same as a small second-hand car for each shot.

After breakfast we headed out on the 1KM walk to the Klinik for my blood-test. It's a nice walk. Most of it is through the middle of a large park that I have mentioned previously. It's opposite the "Fachklinik" (Don't ask me how to pronounce that!) and despite what you might think, it's an Orthopaedic hospital. You know.. the one where everyone is on crutches.. Anyway it's huge! Probably a couple of hundred rooms in size.
So all the patients who smoke, (and that's probably most of them) limp, hobble, or perambulate in their wheel chairs across the road to the park, to engage in their habit. The park is almost always full.

If there is one single word that sums up this part of the world, it would have to be "Clean". There simply is no litter anywhere. With one exception: The Park opposite the Fachklinik in Bad Heilbrunn. Cigarette butts litter the grounds and they overflow the bins that are everywhere.
It would not be hard for one to draw the conclusion that smoking causes broken legs. The two afflictions appear be intrinsically inseparable.

This morning as we walked along, I couldn't help but notice that the smokers had all formed into little groups. Much like they did when I was at school a hundred years ago. One park bench was inhabited by a group of blonde nurses, another a group of brunettes and yet another was solely for those in wheel-chairs. I couldn't help but wonder if we were at serious risk of getting caught in the crossfire of a Turf War!
I can see it now... The women hurling their crutches through the air at each other, the crippled in their wheelchairs clashing head on while old men in zimmer frames totter at each other at a snail's pace, cursing each other in German as they topple like wibble-wobbles through a haze of cigarette smoke.. Yeah I've been here way too long! Even getting out doesn't seem to help!

We arrived at the Klinik unscathed and were greeted by Karina who had a package for me.
I wasn't expecting anything and it looked like a present of come kind from Toyota! Woohoo!
Inside was a cap personally signed by Jarno Trulli and Timo Glock of the Toyota Formula 1 Team, and a letter from Toyota Motorsport Germany, wishing me a successful recovery so that I can get behind the wheel of my "Fantastic" AE86 race car once more. Wow! I'm totally blown away!
I must give a huge thank-you to Bruce Sollitt for his involvement. I really appreciate it! Thanks Bruce!

We made our way to the nurses station and bumped into nurse Natalie coming the other way.
She asked me to take a seat and she proceeded to slide another one of those darned needles into my arm in search of a vein to leech yet more blood from. They don't actually use a syringe.. it's a small "butterfly" looking device with a needle and a long plastic tube. Once they get a flow into the tube a syringe is plugged into the end of it, the plunger retracted, and it slowly fills.
Thankfully this all happened without me really noticing as I was engaged in a conversation with Christine the office manager. She was asking for my credit card so she could pay to have my stem cells sent back. I suggested that I might pay for it at the other end, as she had no idea what the charge was likely to be, where as I already have a quote from World Couriers that I can accept. I passed onto Christine the instructions for filling the dry shipper and requested that I be around to supervise the priming when the time comes.

Now that brings me to another observation. Money. Sarah and I are hemorrhaging it on treatment costs in sums that are just mind boggling. Yet at the same time we haggle over the price of the most simple grocery items.
Take yesterday, I wanted to buy some pickled Gherkins. I could buy the large one for slightly less than two small ones. I could potentially save about 20cents. And you know what.. I actually stood there and seriously considered my options. Meanwhile lets return to the Klinik where my blood has just been tested in the same amount of time that it took me to write the last paragraph. Natalie gives me the results.. WBC 4.5 and platelets 61.
She tells me that my thrombocytes (platelets) are low and that I should return to the Klinik on Friday for a shot of Neumega. That single shot in my arm will cost yet another small second hand car.
In the last two weeks I have been given three platelet transfusions, and I can expect to have around the same number next cycle at $1200 each. Add to that the $2000 a day just for staying and eating their food, then add to that all the miscellaneous items and you can see what I'm talking about.

Sure it's money very well spent, but never in my life have I spent such huge sums as if it were peanuts. I sincerely hope it's the last time too.. on several levels.
Those Gherkins.. I dunno if I should be worried about that extra 20cents or not!?

We made our way home after doing a spot of grocery shopping at Tengelmans. Bread, cheese, gherkins, tomatoes, salmon and a bottle of cab-sav for Sarah. I bought myself a Magnum icecream. (I figure a man needs to have some vices). We amble along through the park, past the smokers, past the walking-framed gladiators, past the "Fachklinik", down into "Im Fachswinkel" lane to our hotel. ..and I wonder to myself.. Why does my life seem like it's somewhere between "Ground-Hog Day" and a script from a bad German porn movie??

...Ron

A day in Bad Tolz

If there's one tiny thing wrong with staying at the Oberland this week, it's the fact that one of the owners, Alexander, has gone away for a few days leaving his wife in charge. She can't cook.

In fact, she won't cook!. So there's no lunch or dinner until Thursday.

Breakfast was pretty basic, rather than the lavish spread we are used to at the Klinik, the hotel lays on a bowl of cornflakes for all to take a share from that would hardly feed me if I just poured some milk on it and had the whole lot. There's no toast, no fruit, not a lot of anything really. Sarah likes to have some of the really heavy bread they have here with some cheese and cold cured meat, like ham and the like.. so she's fine. I starved even after having two bowls (well small cups really) of cornies. Roll on Thursday!

We took a walk down to the information center and asked about how we might get to see some of the Castles. But apparently it would involve a bus to Bad Tolz, a train to Munich and then another to some far flung town, then another bus and a 30 minute walk. I think we will pass on the Castle of Ludwig the II for now. It does look pretty though!

So we didn't get to see this magnificent Castle..

What we did decide to do was catch the bus to Bad Tolz, the nearest large town.

By chance we met Pam and Angela who were also waiting for the same bus.

Sarah and I spent most of the day wandering around the shops.. Well actually Sarah looked and bought things and I just followed.. I lost count of the number of shoe stores we went into!. She must have tried on a hundred pairs before finally making a decision. Then she went clothes shopping.. aaarggh!!

I have to go back to the Klinik tomorrow for blood tests.. hopefully they are all good!

I'll keep you posted :)

I'm so tired after todays effort I'm going to spend the rest of the day in our room tomorrow, watch some movies and relax.

The Escape.

It's Monday afternoon, 21 days after first stepping foot in the door, I've been given the all clear to leave for a short time. My blood counts today are WBC 5.4 and platelets 83.

Dr Kopic has given me my schedule for the rest of my treatment and it certainly doesn't allow me any time to return. This Wednesday I will return for an hour or two for a blood test, Then next week on the 9th I will have my second Dendritic cell vaccine. I've been told by Dr K that they have cultured a new more potent vaccine from my blood, something to do with antigens.. I didn't bother to ask him to give an explanation.

Then on the 12th I will return again and stay for another two weeks. Day one I will be fitted with a port in my chest/collarbone region to allow much easier administration of the infusions and chemo etc. My arms are a mess after all the lines and blood tests, I don't think they could handle another round of chemo, so the port is the best option.

We paid the bill today for the treatment so far. It wasn't as bad as our worst case scenario, but man the price of some of the tests and drugs is staggering. (Just the GCSF was about $600 per injection!) Luckily I won't be needing any more tests for the second round.
The good news is that I'm not expecting to have to return to Germany again for any follow-up treatment as they hope to get the last vaccine into me on the day I leave.

Well we are in the process of packing to move across town to the Oberlander.
I'm looking forward to being able to sleep in a double bed, shower without an IV cannula needing to be kept dry and hopefully a few days of being human again. I don't know if I'll post as much, we hope to get out a little and see some of the sights, but other than that everything will be on hold until round two where I get to go through it all again.
But hey!.. I've made it this far and I'm already feeling better than I have in months.
Should be no trouble to get through a second cycle especially now that we know how my marrow is effected by the chemo, means they won't be caught off guard next time. :)

Cheers for now... Ron (and Sarah)

Sunday: And two steps forward..

After yesterday's rather pathetic blood counts, I'd come to the conclusion that my marrow was all but gone again. There seemed to be no platelet production of my own and the white cell count was only being propped up by the GCSF (stimulating factor).

So it came as a complete surprise when my blood results came back this morning showing a massive increase in WBC, up to 4.7 from 1.6 yesterday. The real stunner was my platelet count. Having had a platelet transfusion yesterday I was expecting it to be around 60 today, but it is a very healthy 100 on the dot. That's better than it was on the day we started chemo. I can only assume that the Goji juice has kicked in. Here's hoping for just a modest drop tomorrow as the transfused platelets die off and my marrow makes a few more of it's own.

With that bit of good news under our belts we went for a walk today and found the Hotel Oberland. It's a bit further away than I thought, about a ten minute walk. However it looks good and the staff are friendly and speak fluent English. So we have booked a room for a few nights starting tomorrow afternoon. We can postpone if anything changes here, like a drop in blood count etc. Dr Glonti tells me that I can start my second cycle of chemo on or about the 13th Sept.

At this stage I think I will stay in Germany until then. Even if I could get an earlier flight than the one booked for the 9th (which is now redundant 4 days before cycle 2), travel time would be over four days return, meaning one third of that time would be spent suffering economy class travel even if I left tomorrow. Just not worth the suffering and the $3000 cost. Sarah will stay to make sure I'm OK until I return to the Klinik for preparation for the second cycle around the 11th Sept.

It's a really hot day outside, around 32C. After walking for thirty minutes to find the Hotel and get back again we are both hot and sweaty, So have taken to the seclusion of our room for the rest of the day.

Karen mentioned that she couldn't look at the Hotel Oberland's website because it was in German. You can translate any webpage into any other language by visiting Google Translate and typing in the address of the website you wish to translate at the bottom of the page.
It's interesting to see the the Hotel does a magic show every saturday night.

Till tomorrow... Ron

Two steps forward, One step back

After yesterday's new found energy I really thought I was on the way to leaving this place, all be it for just a week or two. I had contacted a place down the road called the Hotel Oberland and enquired about staying there for the next few weeks. They advertise that they speak English and look like a great place to stay at only 78Euro a day.
Sarah and I got our hopes up and talked about staying there as early as Sunday or Monday.
Being so close to the Klinik means I could still have out-patient treatment and blood testing done without the huge cost of full time care.

I woke this morning not feeling quite as well as I did yesterday. I didn't feel too bad, just a little flat. Biljana took another blood sample and sent it down for testing. Results were WBC 1.6, up 50% on yesterday. Still low, but improving daily which is good.
However platelets have dropped by 50% to just 21. Back to the danger Zone. Obviously Megakarocyte production would appear to have not kicked in yet.

Once my infusions were given this morning, plus the last GCSF injection , I was administered another two units of platelets .
That's six now in total, plus the two units of whole blood. You have to admit they certainly err on the side of caution here at the Klinik.

Once the platelets were all in, we got ready for lunch and were about to head out the door when I decided to check my face in the mirror as I felt an itchy lump on my forehead. There were several large welts on my face and neck. Hard raised welts that were white on the raised section and red around the outside, approx 12mm in diameter.

I checked in at the nurses station on my way to the restaurant and showed them to Dr Glonti, Telling him I was having a histamine reaction. He looked quite concerned and asked me to sit down, before running off out the door in search of drugs. He returned with yet another IV.
Biljana and Francesca both fretted over me, plugging in the IV and telling me that I should tell them next time straight away. I pointed out that I had ! It was only 60 seconds between finding them and having the IV.

We had lunch, I took the IV stand with me into the restaurant. Most patients do.
By the time I returned to my room I could hardly stay awake. I lay down and fell asleep all afternoon. I'm still incredibly drowsy even now five hours later. The day has been a write off.

I got a piece of paper handed to me last night. I translation of a report on further more advanced testing on my bone marrow that was done late this week. It reconfirms that my marrow is totally clear.

I quote: "In the above mentioned case we performed additional immune-histochemical examinations. In the presentation for CD3 and CD79a individual scattered T- and B- lymphocytes without identification of tumorous infiltration are shown."

"In summary it can be stated that after performing the above-mentioned additional immune-histolochemical examinations no indication for a haematological system disease or any marrow-infiltratrating process is given. In particular there is no indication for infiltrates of the known Hodgkin lymphoma."

To the layman it changes nothing, my marrow is clear, we celebrated that last week, However I wanted to put the results of the more advanced test on the record.

Not much more has happened today. It's now just a case of waiting for the bloods to increase and stabilise. Could be days... could be longer.. sigh.

..Ron