Arizona and Cancer progression

A sister is a gift to the heart, 

a friend to the spirit, 

a golden thread to the meaning of life. 

 ~ unknown







Back in Oz already for over a week.  Lots of bad news since we returned home.  Arrived Friday had bone scan Monday and Cancer marker CA15.3 on Tuesday.  Both bad news.  Previous tumours had grown considerably and more tumours had formed in the bones.  Cancer marker had gone from just over 1300 to 5000.  Yikes.  Liver enzymes were all up and white cell count below normal.  Have since had CT of liver and have a new 2.3cm tumour there.

Saw the oncologist and we went back over the cancer markers while I was having Abraxane chemotherapy back in January and February.  The results were actually not too bad with a steady drop in marker.  The marker didn't go up till I got to Germany and tested it about 20th April when I had been off the Abraxane for about a month.  So the new plan is to restart Abraxane at a lower dose (as I got very sick after six infusions when I had it before) as well as Xeloda which is a twice daily tablet of chemotherapy.  Apparently cancer cells convert it to 5FU.  Have had three tablets so far and have been ok until about an hour ago when I started feeling nauseous and a bit weird in the head and chest.  Hopefully my body will adjust as it is supposedly not a high dose.  Meantime keeping a close eye on response.  This time weekly instead of monthly, which I am much more comfortable with.  I don't want to wait a month to find treatment is not working and have even more tumour progression.

When I had liver tumours in 2009 I had trans arterial chemo embolization of the liver.  Three treatments with Dr Vogl in Frankfurt got rid of all 4 tumours.  This treatment now appears to be available in Sydney so I will be exploring that option.  Basically what is done is a catheter is passed via the femoral artery in the groin to the tumour in the liver.  A small amount of chemo drug is injected directly into the tumour area and a small plug is placed in the blood vessel to keep the tumour bathed in the drug.  The plug dissolves over time and the chemo is distributed through the body and eliminated.  The beauty of this is that only a small amount of drug is required and when the plug dissolves the body is easily able to cope with this small amount and eliminate it.  The longest part of the procedure is lying flat and still while the femoral artery closes up, takes about 4 hours.

On a happier note the trip after New York, 3 weeks with my sister in Arizona and 1 week in Hawaii were fantastic.  The treatment in Germany seems to at least have reduce the bone pain considerably and my energy levels were better as well.  Just staying with my sister and spending time with her was great.  The bonus was a couple of trips.  Firstly my sister organised the rental of an Airstream caravan.  These were very popular in the 60's and 70's.  Our one was from 1973.  They are very distinctive shiny silver caravans.  Surprisingly spacious and comfortable.  On the day we left it was predicted to be 113F (45C) so very hot.  We were heading uphill and after about an hour and a half we were much cooler.  The plan was to be away for 5 days and take two days to get to Santa Fe in New Mexico, stay there two nights and then tow days for the return trip.  The whole trip was at higher altitude so that would be pretty comfortable.  We had a fabulous time, the scenery was fantastic.  One of the things I like about the American country side is that despite the huge population relative to Australia it is really easy to find a good camp spot that is not crowded.  It helps that there are lots of places you can just pull off the road and camp.  Our first spot was on the edge of pine forest with stunning undulating grassland into the far distance.  There had been a lot of fires through the forest with huge stretches of dead pines.  We were lucky to find a spot that had been minimally affected.


The second day we found a most beautiful lunch spot at the bottom of a small sandstone cliff and lava fields on the other side.  There was even a ruin of an Indian cliff dwelling.  The second and third nights camp spot was in a designated camp area with pit toilets but no power or water on tap.  We were beside a lovely little flowing creek and multi-layered and coloured cliffs surrounding us.  We had all our meals outside, just lovely to enjoy the fresh air, nature and each others company.  One night it was quite cold.  Because of the drought there was a fire ban on wood and charcoal fires but we had a pit fire that was fueled by gas so no danger of embers flying off.  It worked out really well, very cosy and just like an really good log fire.  We left the caravan there and went to Santa Fe with a lovely lunch stop just outside Santa Fe at an Mexican style cafe with a lovely big open but shaded verandah.  Dogs were allowed so there were lots of those including my sister's dog Roxy who had come along on the trip.  A pity there is not more tolerance of dogs at venues in Australia. Santa Fe was great, I particularly liked the architecture and there were lots of interesting little galleries and shops.  we visited the Georgia O'Keefe museum which was fascinating as it included quite a few photos of her on painting trips in the surrounding countryside.

Quite a few camp spots were closed due to bear attacks.  The drought had reduced their food source and they were checking out the campers for a bite (literally in some cases).  These were black bears, a bit small than the Grizzly so I don't think anyone actually got killed.  One campsite also warned of Mountain Lions.  We were very glad we were in a caravan and not a tent.

The trip back to Fountain Hills was also wonderful.  We saw a large herd of Elk in the biggest caldera I had ever seen.  The area was obviously very volcanic at some point.  There were miles and miles of lava fields, amazing.  I remember one lunch spot getting out of the truck and just smelling the beautiful pine trees.  Lots of Ponderosa pines which have beautiful trunks, a bit like the pattern on giraffes.

We also did a weekend trip up to Flagstaff, also much cooler than around Phoenix.  We stayed in an lovely old hotel in the center of town where there were lovely shops and cafes.  A friend of my sister was participating in a two day horse eventing competition.  It was really fun to watch the horses racing through the open pine forest and taking the log jumps.  Very exciting.

Hawaii was very different.  I didn't do very much, a lot of lazing about on the beach on rented beach chairs in the shade of an umbrella.  The water was lovely and warm as was the air temperature.  We had splurged on an apartment with ocean vies right next to the beach and on the 14th floor.  Palm trees, sunsets and watching the surfers.  We saw a couple of very large turtles feeding very close to shore which was very special.  Tried to climb up Diamond Head but it was too much.  Made it about three quarters of the way up which was amazing.  When we got to the stairs my spirit was still willing but the body rebelled.  Downhill was a lot easier.

The cancer may have progressed while I was having a holiday but I have no regrets it was absolutely wonderful and nourishment for the soul.

Living and thriving

Linda

Amsterdam, cancer treatment and New York

Miracles start to happen

When you give 

as much energy

to your dreams

as you do to 

your fears

 ~ Richard Wilkins






The apartment we rented in Amsterdam turned out to be as good as depicted on the internet.  This is not always the case.  Our lovely apartment was right across the road from  the Amstel Canal, which is actually a river and is wider than most canals.  We were walking distance to many of the sights we liked including the Rijks Museum, Rembrandt House and Rembrandt's Plein.  I seemed to be getting some energy back and the peripheral neuropathy was bearable.  Thank goodness for the joggers I bought the day of our departure from Sydney.  They are light and soft  and have been a godsend.

Amsterdam is flat except for the little bridges over the canal so we managed to do quite a bit of walking.  Very pleasant along the canals and amongst the old houses.  We spent quite a bit of time just strolling along the canals.  We were also lucky to find an organic food store close to the apartment.  One of the ideas of having an apartment as opposed to a hotel is that we can be more picky about the food and so eat more healthily.  Our landlady even brought us a freshly made vegetable juice.

I don't like museums much as I find them very tiring but we went to Rembrandt House which is quite small and so easy for me to get around.  It is a lovely old house from early 1600's and Rembrandt lived there from 1639 to 1658.  It is a beautiful old house with interesting old features such as the beds.  These were in cupboard like structures with doors and very small as people sat up to sleep as they thought they would die if they were lying down.  There was an old hand water pump in the kitchen which reminded me of one we had in our kitchen in Holland when I was very young.  The other really interesting part was the demonstration of paint making.  Rembrandt only used mineral based paints as they would last longer than organic based paint.  It required the stones to be ground and mixed with oil.  Hard work, very interesting process and apparently mostly done by Rembrandts students.  We also walked to Rembrandt's Plein a few times to have refreshments at one of the many cafes and enjoy the ambiance.

In the short time in Amsterdam we managed a little excursion to Bussum, where I was born.  The landlords drove right to the street where I was born and dropped us off to give us time to look around and make our own way back to Amsterdam by train.  I was standing in front of a house, number 11, thinking maybe it was the one I was born in.  I rang my sister, Yvonne, in Australia and asked if she knew what the number was and it was in fact 11.  Amazing.  We had a bit of a look around the village and visited a couple of nice cafes to rest before catching the train back to the beautiful central railway station in Amsterdam.

The highlight was catching up with family.  My cousin, Joke, organised a family get together starting with some drinks and nibblies at the Amstel Hotel which is a beautiful old hotel on the Amstel and very close to our apartment.  My cousin Carla was there who I had not seen for 38 years so that was very special.  Her partner also came and I had not met him so that was nice too.  My cousin Joke was there and her mother and it was delightful to see them.  We then went on to an Indonesian restaurant near the Flower Market.  The fabulous food and the wonderful company made for a great evening. 

We also met up with another lovely cousin, Ingrid, and her partner, Evert.  They came to our apartment and we looked at some photos then went to have dinner at the cafe in the corner, a few doors up from the apartment.  It was wonderful to catch up again.  They also took us to the airport when we were leaving to go to New York.

Our trip to Amsterdam was cut a bit short as we had to go back to the clinic in Germany so I could have some more antibody treatment.  One treatment was an apoptosis (tumour cell death)  inducer and the other treatment was a little more complex.  It involved blood being sent to a Greek laboratory six weeks prior where they grow up the cancer cells and manipulate the genes which then somehow comes back as an infusion.  Not fully clear on how it works but it is supposed to address some of the genetic problems the cancer cells have that stops them being destroyed by my immune system and treatments.  For example the MDR (multiple drug resistance) gene in the cancer cells is over expressed by 65% which means that the cancer is very resistant to a lot of treatment options.  If this can be improved I would obviously have a lot more treatment possibilities that are likely to be successful.  So we flew to Stuttgart on the 12th (via Hamburg to get a cheap flight), caught a taxi to the clinic, had the treatment and left again at 5.45am the next morning to go back to Amsterdam.  The next day we flew to New York.

Loved the time in Amsterdam - beautiful city and wonderful family.  I feel blessed and grateful.

New York was not really a city I was looking forward to visiting.  It is a good stop to break the journey to my sisters place near Phoenix but the last two times we were there I was too sick to enjoythe city and spent most of my time in bed in hotels that were less than pleasant.  It was warm when we arrived late evening and we had some packets of organic tomato soup which has been a staple for me when I have been unwell from treatment or the cancer itself.  The apartment was very nice exceptfor the street noise although that didn't keep us awake.  The next day was sunny and warm and I was feeling pretty good again.  We caught a taxi to the big Apple store near Central Park, found a phone store and got US SIM cards for our phones to help keep our bills to a minimum. It was then a short walk to Central Park where we got a bicycle buggy into the park.  We had a bit of a walk around, checked out some buskers and then had a leisurely lunch at the famous Boathouse by the lake.  We then walked to Times Square and watched to passing parade of people before heading back to the apartment.  We also managed to book some tickets to a Broadway show, Mama Mia.

The next day I had developed a nasty head cold (no surprise after 5 flights in 3 days).  That put me in bed basically for the rest of the stay other than managing to get to the Broadway show.  Glen went off to the United Nations, Rockefeller Center, Radio City and Ellis Island.  I read several books and slept a lot.  Unfortunately my health is such that a small cold can really affect me.  Fortunately was getting much better by the time we left for Phoenix.

Living and thriving
Linda

Germany and Italy

Life always offers you

a second chance

It is called

tomorrow.

 ~ Gregg Braden





It has been a busy time since my last entry having a holiday.  After four years of hard work with little time off from treatments it is good to have a break with just doing the basics.  Less than 20 tablets per day, one infusion per month, two injections per week into muscle plus another one once a fortnight.  Minimalist really.

After our lovely time in Bad Wiessee we went east of Munich to Aichach and stayed in the old part of the village along a cobbled street along the old town wall just between two towers dating back to 1604.  Very picturesque and the hotel was quite nice with a spacious room with a veiw of the tower and some other old buildings.  We only had a few days there but they were very pleasant and we went to a friends wedding on the last day which was lovely and very special to share.  We also met some interesting and wonderful friends of the couple there.

Next we went to Berlin.  The first day was nice and warm and despite our tiredness we went to the Brandenburg Gate after we had settled into our hotel on the Kurfustendam.  There was lots of activity at the Gate with buskers and horse drawn carriages and of course lots of tourists.  Great way to start our Berlin visit.  Unfortunately the weather turned cold and bleak after that.  We bought tickets for the City Tour jump on jump off bus.  With the bus it takes about 2 hours to do a round trip but you can get of at many designated stops and hop on another one when you are done.  They came every ten minutes so never had to wait very long.  We saw sections of the Berlin Wall from the bus and used it to take us to Museum Island where we enjoyed the Neues Museum, which had a good Egyptian Section including a bust of Nefertiti,  and the Pergamon Museum which had the Ishtar Gates, from ancient Babylon, which were truly amazing.  We caught up with some friends, Carolin and Liam, from Australia who were also stopping a few days in Berlin and our trips happened to overlap.  We went to a nice Italian Restaurant nearby the hotel and on the last day visited the zoo where I managed to lose my camera. I was in a wheelchair as it would have been too much to walk around there and I had taken some opiate pain medication which always makes me a bit ga-ga for a while and I must have dropped the camera from the wheelchair.  Luckily I had just downloaded photos onto my computer the day before so only lost those I took at the zoo.  I always have mixed feelings when I go to the zoo.  On the one hand I love to see the animals, on the other hand I hate to see them caged, no matter how elaborate the cages are. I know all the arguments for and against zoos but I still cringe a bit.

The next stop was Sicily and we were looking forward to some sunny, warm weather.  Our flight approach gave us fantastic views of snow covered Mt Etna.  We caught a taxi from Catania airport to Taormina, which normally takes about an hour.  I had used Google maps to check out Taormina when I was booking the apartment to see if it was in a suitable location for what we wanted so I had a reasonable idea of what it looked like.  Next thing I know the taxi is sailing past what looked like where we should be getting out.  I questioned the driver but he was following his sat nav and indicated all was well.  There didn't appear to be any message in Italian saying "turn around you are going the wrong way" even though we were.  We ended up in narrow little streets in the next village further up the mountain after several tortuous bends in the road.  As we got to the next village he started to ask the locals about the address he was trying to find but no-one was able to help.  We ended up in a dead end street little wider than the car in which the driver somehow managed to turn the car around with minimal damage to the buildings either side of the road.  Not sure about the taxi fenders.  Let's just say it was noisy.

Down the hill we went again on the windy mountain road.  By this stage my back was in a bad state and I had broken out in a sweat.  We got back to Taormina and he asked other taxi drivers at the local taxi stand.  After much running around by various taxi drivers and much gesticulation we were off again.  Finally we stopped at a little plaza that looked familiar, the taxi driver got out, unloaded our heavy bags and pointed up the hill and said 'it is up there'.  There was no way I was going to be able to drag my bag up that hill without even being able to see the accommodation or how far up the hill it actually was.  So I refused to pay and indicated this was not satisfactory.  The taxi driver than hauled some hapless Italian off the street who spoke some English and I explained my back was too sore for me to haul my bag up the road.  Next thing I see is our somewhat overweight and short taxi driver is dragging both our bags up the hill.  With us in hot pursuit after much asking locals and turning down a couple of little alleys we got to our destination and I was able to give our by now seriously sweating taxi driver a round of applause and his money.  It had taken two hours to get from the airport.

We were meeting friends, Zana & Erica, at the apartment who had been working on some cruise boat as artists in residence.  It was actually their idea that we go to Sicily and that is how we ended up going to Taormina.  When I found the apartment it happened to be two bedrooms so we invited them to stay with us there as our stays overlapped a few days.  Although the apartment was lovely it was in fact only one bedroom with a sofa bed in the lounge room.  This wasn't in fact a problem as everybody other than me were out most of the day and I managed to sight see mostly half days and then had to lie down any way.  We ate out most nights and the food was great, inexpensive and really fresh simple Italian food. Yum.  The owner of the apartment, Vanessa, owned a restaurant about 25 meters from the apartment and the rental included one free meal there during our stay of which we availed ourselves the last night.

Our second day in Toarmina was lovely.  The weather was warm and sunny, the buildings old and interesting and a relaxed holiday atmosphere pervaded the place.  We were close to the main road through the town.  By this I don't mean the main road for cars but the main tourist road, mostly pedestrians with the occasional  car slowly driving through the throngs of tourists.  This road was lovely and flat so easy for me to manage with lots of interesting little staircased alleys running off either sides and plenty of shops, cafes and churches along the way.  There were a couple of old gateways along the way with some of the old town wall attached.  The views from some of the plaza was spectacular as we were quite high up and looked over the sparkling Mediteranean and Mt Etna.  We visited the Roman ruins of a Greek theater (very confusing) which were impressive, still used and had spectacular views from certain parts.  It was exhausting and wonderful.

Another lovely, peaceful spot in Taormina were the public gardens designed by Florence Trevelyan in the early 19th century. These gardens are planted with a huge variety of plants and shrubs ranging from the most common to the exotic.  A panoramic walkway with magnificent views over the coast and Mount Etna weaves its way along one side of the gardens.  Glen went on a couple of excursion, one to the top of Mt Etna and another across the island to Agrigento and then to the Roman Villa closer to Taormina.  I didn't go as they were very long excursion and would have been too tiring.

Next stop was Amsterdam and we had a terrific flight from Catania.  First we flew past the still snow capped Mt Etna, then saw Stromboli and then had a view right into the crater of Mt Vesuvius.  Amazing to see three volcanoes in one day.

Living and thriving.

Linda

Bad Wiessee

To accomplish great things,

we must not only act, 

but also dream; 

not only plan, 

but also believe.

       - Anatole France

Bad Wiessee certainly turned out to be a great choice for some well earned diversion from cancer treatments.  The weather started off cold with snow and sleet but this turned out to create  beautiful winter scenery on the mountains around us and gave us a unique trip, for the time of year, up to Wallberg with it's spectacular views.  I love the silence and softness of snow as well as the lovely crunch underfoot.  The views were spectacular with a clear day, could see all the way to the Austrian Alps.  Spent several hours up there soaking in natures beauty as well as having a lovely hot chocolate at the restaurant. 

Had time for lunch of the delicious fresh white asparagus soup that seems to be very popular in southern Germany at least.  Had it a few times at the clinic in Hallwangen.  We had this at a lovely old restaurant at the base of Wallberg with a bit of time left over for a short walk through some forest before we caught a bus back to the hotel.  Buses are free here for tourists which is great.  They run very regularly.

The next day was much warmer and nice and sunny so we spent time along and on the lake.  We caught a ferry across to Tegernsee where we had lunch near the big monastery that is also a brewery.  Lovely old building right on the lake. The chestnut trees are in flower and stunning, I have never notice these flowers before and only really remember the fruit.  Lilacs are also out, there are more here than in Hallwangen and I don't need any reminders to stop and smell the flowers. After lunch we got back on the ferry and continued our trip right around the lake.  Some lovely old buildings along the edge, snow capped mountains in the distance and the colour of the water was a sparkling bluey green.  Unfortunately not captured on photos.

The following day was also sunny although there was a cool breeze.  We went for a lovely walk through some forest and then along the lake, stopping off at a cafe for a cuppa along the way.  One of the great things about pretty well any walk we have done is that there are lots of seats for sitting and enjoying the surrounds and for me to give my back and feet a rest.  These are really my main somewhat debilitating problems.  Severe back pain and peripheral neuropathy which makes my feet sore, this really restricts how far I can walk.  So lots of little rests giving a wonderful opportunity to soak up the views. My cousin, Joke,  left on this day.  We had a wonderful time with her and were very glad she came.

The next day we moved to an apartment we had stayed in when I was attending the clinic when it was still in Bad Wiessee in 2009.  It is in Abwinkl which is really just on the outskirts of Bad Wiessee and has a lovely backyard, the landlady is delightful and the other bonus is that there is a dog, Fraulein Lisa, very friendly and active.  Has a dachshund face but normal body proportions.  I was worn out and feeling quite unwell after several very active days and rested most of the day other than wandering a few minutes down the street to have dinner at a restaurant as we didn't have anything to cook and the shops were closed.

On the 20th I was feeling much better and we decided to try and walk up the hill to a cafe we had been to in 2009 (driven up by other patients from the clinic).  We ended up taking a side track which turned out to be a good choice.  It was a lovely walk mostly along a creek in the forest of pine trees, beeches and oaks.  Many birds could be heard, but not  many seen, very cheerful sound.  With lots of rests on the predictable seats along the way we got up quite a way and found a beautiful old farm building that was now a cafe with views over meadows, goats grazing in the distance and then hills with lovely dark pine trees.  After a rest and a refreshment we found a different trail to go back down to Bad Wiessee.  The wind had picked up and was very bracing in the meadow until we got back into some forest.  My back is less sore going downhill so that was easier.  Again we had lovely flower filled meadows interspersed with forest with a large variety of trees creating a patchwork of greens and textures.  It was certainly a highlight, same sort of feeling of contentment and satisfaction as the longer forest walk in Hallwangen and the last 3 days in Bad Wiessee.  It wasn't until the following day that we did the walk to the other cafe and into the forest beyond that.  Very tired again after those two excursions and very grateful that I was able to walk as far as I did.  I remember when we were at that cafe on 2009 and we walked about 50 meters into the forest wishing that I could walk further into the forest.  I was much too sick at the time but my wish did come true. 

Medically I am going quite well to this point.  Have manage to give myself the Faslodex which is a 5ml injection into muscle.  Painful but I managed.  I am having some problems again with nausea in the mornings and muscle cramps mostly at night.  Have bought extra magnesium powder so am taking 4 times the recommended dose.

Nest stop Aichach for our friend, Sabina's wedding.

Surviving and thriving

Linda

Progress in Hallwangen

Dreams are renewable. 

No matter what our age or condition, 

there are still untapped possibilities 

within us and new beauty waiting to be born.

       - Dr. Dale Turner

Being a bit slow on the blog entries and a lot has happened.  Medically my bone marrow test was positive for cancer cells.  This means I didn't have the bone cancer treatment in Stuttgart and I have to be even more careful with watching my blood cell counts especially if I have more chemotherapy.  It also explains why I have trouble getting my white cell count any higher than low normal.  We had a final planning meeting with the doctors at 5pm on our last day so that was difficult as I was very tired by then.  I managed pretty well considering mainly because I had a coffee enema in the morning to reduce pain and detox the liver and then had a cup of coffee with our landlady as a sendoff in the early afternoon so I was buzzing from all the caffeine.   The plan is to have a break from treatment (well most treatment) over the next couple of months while we have a well earned holiday.  I will only be doing two infusions of Zometa (for bone strength) and a minimal number of tablets - less than 15 a day.  We will also be returning to the clinic on the 12th June for antibody treatment.  This will mean flying down to Stuttgart from Amsterdam, returning the next day and then leaving for New York the following day.  A bit of a shame to cut the Amsterdam section short.



 

I had a few days break from treatment while we were still in Hallwangen which was nice as I was feeling more nauseous each day.  One afternoon, after feeling nauseous and tired most of the day, Glen suggested a short walk.  It was lovely and warm, the sun was shining and I needed some exercise.  On a previous day Glen had found a lovely meadow leading up to the forest that she was sure I would enjoy.  It was gorgeous.  The dandelions were finishing up their spring flowering with lots of lovely puffy seed heads, the buttercups were now in full bloom so the fields were still full of sunny yellow blooms as well as little white daisies and other flowers in amongst the green grasses and clovers.  There were stil quite a few fruit trees in flower as well.  We walked through the meadow and sat on a seat at the edge of the forest with a lovely view back over the village.  There was a little track leading into the forest just behind the seat which we ended up following.  We spent the next two hours strolling through the pine forest, past meadows and little creeks.  There were lots of birds and fortunately many seats for me to rest.  I felt so revived from this foray into nature. 






We arrived in Bad Wiessee in Bavaria on the 16th May. Was expecting my cousin, Joke, to arrive on the 17th but she had already arrived so that was a nice surprise.  The other surprise was the cold and the snow.  This turned out to be a bonus because the next day it had stopped snowing, the sun came out and we caught the cable car up the mountain (Wallberg) and walked around in a winter wonderland.  The snow on the mountains was gorgeous.  We had lunch in the restaurant on the mountain top.  We spent several hours there soaking up the quiet that snow always seems to bring and enjoying the beauty of nature.

Having internet issues and will post more as soon as I get that sorted.

Surviving and thriving

Linda

Light Relief from Treatments

 
When you get to the end 

of your rope, 

tie a knot and hang on.
       

     - Franklin D. Roosevelt






 The clinic organized  a lovely excursion for about 8 of us patients and carers to a castle about 50 km away.  We were very lucky with the weather as we had rain on the way there and back but not while we were at the castle.  There was a freezing cold wind but we got a few snippets of sunshine.  We didn't leave the clinic till after 2pm as most of us had to finish our infusions first.  It was a pleasant trip through the countryside with lots of fields of bright yellow canola flowers blooming and passing through some lovely old villages.




We got a view of the castle some distance away because it is on a hill in the middle of rolling fields with forest on the slopes on the actual hill leading up to the castle.  Our van dropped us about 2/3 of the way up and then we caught a little shuttle bus the rest of the way.  Not as nice as the horse and carriage ride we did when we went to Neuschwanstein castle, a few years ago in Bavaria, but through very similar forest of mostly beech trees.  We were out of the Black Forest area which is mostly pine trees.  A very nice contrast to the very dark pines, certainly can see why it is called the 'Black' Forest.

The castle was spectacular. It was much bigger than I had expected and could really get a sense of defenses and opulence.  Apparently this is the third castle on this spot.  The earliest mention of the first one dates back to 1601 but was destroyed by two brothers fighting over the property after a siege in 1423.  In 1454 rebuilding was commenced and via various owners sections were added particularly fortifications.  It later became neglected and turned into ruins by the early 19th century.  Prince Frederick of Prussia decided to renovate and eventually created one of Germany's most imposing castle complexes in the neo Gothic style.  It was badly damaged in earthquakes in 1970 and 1978.  Maintenance and renovation costs are now covered by entry fees.

It is certainly an impressive, interesting and beautiful structure with wonderful views over the surrounding countryside.  The entry to the castle is via a fortified circular road with two drawbridges and battlements.  The entry to the main courtyard is gorgeous and looks like something from a fairytale. The first entry into the main building was a beautiful little chapel with stunning leadlight windows and blue and gold ceiling.  We then went on a guided tour as it was the only way to get into the main interior of the castle.  This turned to be initially very annoying as it was in German but once I stopped taking myself too seriously we hung back and enjoyed the beauty and history of the interior in our compulsory slippers (presumably to protect the imported Italian marble floor tiles as well as some beautifully inlaid timber flooring).  


The interior was interesting and some of it quite beautiful.  Views from the windows were amazing and certainly would have been strategically very helpful.  The enemy could be seen coming from a great distance.  Difficult in a siege and I think there were two in it's history that were recorded both lasting about 8 or 9 months.  We also went down into what we thought were the dungeons but were actually store rooms.  Interesting too as some of the stonework was from the original castle but it was colder than a fridge down there.

Yesterday I had a hyperthermia treatment.  First I had to get in a hot bath which is pleasant for about the first 3 minutes then most unpleasant but got my temperature up to 38.4C.  Then into the infra red hyperthermia tent with rectal thermometer, nappy, ecg leads, blood pressure and heart rate monitor. That gave me a bit of an idea of the fun to follow. The aim was to get the temperature up to at least 39C but preferably 39.2C.  By  39 I was getting uncomfortable, by 39.4C I was ready to leap naked out the window, rectal thermometer, nappy and all just to get some relief from the heat.  I was given intravenous valium a couple of times but it had no effect.  The nurse took me out of the tent then and I thought 'great I can cool off'.  Nooooo.  She wrapped the now collapsed tent around me to try and keep the core body temperature up as high as possible for a further 3/4 hour.  The insulation from the collapsed tent was quite heavy and very effective at stopping any sort of cool down.  I think I lasted about another 10 minutes.  'Get me out of here!!' Even though my heart rate only went up to about 105 and my blood pressure was pretty good I felt like my heart was really pounding and I was feeling quite nauseous.  The irony of course was that within about 15 minutes I needed something to warm up.   I slept better last night than I have for about a year.  So it did some good.  Hopefully it also stimulated my immune system and de-stabilised some cancer cells.


Currently I am on the Removab infusion.  It has been 6 hours and no reaction so far despite the fact that the dose was again doubled.  When I have responded it has been at about 8 hours so I am still hopeful.  Staying in the clinic overnight just in case.  Still in the infusion room now as the internet is better than in the hospital rooms.

It is now the next day and I have had no reaction to the Removab clinically or on basic blood test checking blood counts and liver.   Meeting with the doctors planned to reassess treatment plan.  Mornings at the moment are nauseous and afternoons/evening are headachy.


Still waiting for more detailed blood results and bone marrow test.  Really would like to get that before the weekend as if bone marrow is clear will need to organise trip to Suttgart before we leave for Bavaria on Wednesday.

Surviving and thriving

Linda

Visit to Freudenstadt

To love and be loved 

is to feel the sun 

from both sides.
      

 - David Viscott

 There have been some ups and downs since my last entry, so just the usual really, same as everyone else. Disappointingly I did not have any reaction to the last Removab other than a headache the next day. Routine blood test also reflected no response.  Now waiting for more in depth blood test to see if there was an immune response.  This has meant a change in the game plan.  Now scheduled for hyperthermia on Monday and Removab on Tuesday.  Hyperthermia is a 2 1/2 hour process starting with a hot bath then in a hyperthermia 'tent' to get body temperature up to 40C.  Then a slow cool down.  It gets very uncomfortable after about 39C and I will be given tranquillizers to help cope.  A combination of the heat and tranquilizers is apparently very tiring and so most people sleep in the afternoon.   The Removab will be double the last dose and I will be monitored closely so they can stop the infusion if I start to react.

Found out after my bone marrow aspiration I should have some sedation which apparently would have made the pain more bearable and completely forgettable.  That would have been nice.  Haven't been able to find out why I didn't get it but not impressed.  It was only a short procedure but quite painful.

Yesterday the weather was stunning and together with a couple of Canadian women we went to the nearby town of Freudenstadt.  The taxi dropped us in the main Marktplatz (marketplace) and we walked around for a bit and ended at a cafe near where we started.  We had a lovely time.  There were plenty of flowers and interesting old buildings.  There was a beautiful old church we went in only find the inside quite modern.  There were some photos with history which was interesting.  The foundation stone was laid in 1601 then in 1632 there was a fire in the town which destroyed 141 buildings but not the church.  The church was almost completely destroyed in 1945 when Freudenstadt was heavily bombed.  Only the towers survived and the church was later rebuild but the beautiful interiors had been lost.  Some black & white photos showed how lovely it must have been.

We also came across some lovely old buildings at the edge of town not far from the Markplatz and with pine forest in the background.  Even though rebuilding must have occurred in the late 1600's the building here do look a lot newer than some of the old German villages I have seen.



We are hoping to also go to Dornstetten which is a smaller town than Freudenstadt but larger than where we are in Hallwangen.  Looking at tourist maps and photos it looks like it has a lovely old part of town as well.  Hopefully the weather will improve again and I will recover quickly from the treatment on Monday & Tuesday.

Surviving & thriving

Linda