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

Loving Kindness in Action

Kindness is tenderness. 

Kindness is love, 

but perhaps greater than love...

Kindness is good will.

Kindness says, 

"I want you to be happy."

       ~ Randolph Ray

It has become quite busy at the clinic with 7 new people, some of whom are carers and not patients.  They are in various stages of 'wellness', most are first timers to the clinic.  Quite a change after a week of just four of us veterans.  One thing that I have been really noticing since we have been here  is the kindness shown not just by the staff to the patients but the patients to each other.  At times I have found it profoundly moving.  Sometimes just one patient carer crossing the room and placing a blanket on another patient without being asked.  One patient dragging a drip stand helping another patient with a drip stand into a wheelchair, infusion tubes all over the place.  Just pure kindness and caring without any expectations of a 'return'.  

There is amazing empathy, understanding and a deep sharing between patients and patients and carers also.  The carers will get their 'patient' a protein shake and check if anyone else wants one, same with water, glasses and anything else needed for comfort.  This is beside all the sharing of information and experiences and plenty of humour in spite of some serious suffering going on.  I thought the photo Glen took one morning of the horses giving each other a back scratch was somehow appropriate to the topic for giving and kindness. 

On the subject I would also like to thank everyone for their emails, blog and facebook comments.  I really appreciate the support, caring, kindness, encouragement and thoughtfulness  of your words.  I am sorry I have not responded personally to thank you but you have warmed my heart  and I am very grateful for your friendships.  I am also deeply grateful to Glen for all her help in looking after me from carrying my computer to doing all the shopping and food preparation ensuring I have enough to drink, that I am comfortable and so on. 

I started the Removab infusion about 6 hours ago and have just got comfy in the hospital bed ready for the reaction.   There is another patient also on Removab today who has also had to head off to their hospital room.  Have had a good day so far.  Had a physio session this morning and a Reiki treatment after lunch.  Very pleasant and relaxing, good preparation for the coming  hours.

Have also had a bone marrow aspiration done which was quite painful.  This is to look for tumour cells in the bone marrow.  There is a new treatment available that involves radioactive particles being injected that are preferentially absorbed by bone tumours.  The radiation only spreads out about 1 mm so other tissues are not affected.  If the tumours are in the bone marrow, however,  this would be a problem as the radiation will knock out some of the marrow and so inhibit blood cell production which is pretty serious if the blood cell count is already low from other treatment as is the case with me.  Won't get the results for 10 days and the treatment requires a trip to Stuttgart.  No use planning anything before we get the results.

It was May Day here yesterday which is quite a big Spring celebration certainly in the south of Germany, not sure of elsewhere.  Unfortunately we missed the activities but most villages have a raising of the May Pole with music and other celebrations.  The night before they have big bonfires and fire works.  We were home and thought it was thunder.  Have a lovely view from the hospital bed.  Just outside there is a beautiful young pine tree with a white blossoming tree directly behind it with the blossoms visible between the pine branches and either side of the pine tree.  In the distance there are the lovely green fields,  a few houses, a variety of trees and some lovely fluffy white clouds in a mostly blue sky.  

Going to rest and read a little now and wait for my temperature to start going up and the shakes to start. 

Surviving & Thriving

Linda 

Spring & Clinic Treatments

 

 
Hope is like a bird 
that senses the dawn 
and carefully starts to sing 
while it is still dark.
 
    ~ Anonymous







It is Sunday and although I don't think I am upto managing a whole blog entry I thought I would make a start.  I am very tired today and having a bit of nausea on and off, spent most of the morning infusion dozing.  Just to give an idea of what I get I will give a list for what I have had today.  A bit less than usual.  Started off with an iv injection of Viromax which has shown up in some immune tests to be effective for me to boost natural killer cells.  Then onto the infusions: pantazol (for stomach), hepamerz (for liver), magnesium, vitamin C, selenium,  zinc, glutathion and alpha lipoic acid. Tablets are quercetin and immune-plus. Yesterday I also had two lots of vit B infusions.  If I am badly nauseous I will also have an infusion of Zofran with dexamethasone.  Then I have had an intramuscular injection of artesiane which I have twice weekly and then every few days I also have an infusion of fish oil.  So you can see why I am in the clinic for so many hours.  Some infusions, such as hepamerz and magnesium have to be given slowly or they make me sick.  Others can be infused a little faster.  The amounts also vary.  some are only in 100 mils of fluids, most in 250ml and some in 500ml or 1L.

It is now Monday and the sun is still shining after a thunderstorm late yesterday.  Felt a lot better by about 2 pm and finished the infusions nice and early so took a different route home and went through the centre of Hallwangen.  There are some lovely old buildings in the typical German style.  It is quite a small village with paddocks still undeveloped. There are not very many really old buildings.  Often in the the German towns and villages there is a nice historic 'Rathaus' or council building but the one here is not that old.  Still the village has quite a nice feel and the being Sunday the church bells were adding to the pleasant atmosphere.  With the warmer weather the flowering trees are becoming quite spectacular and there are even  more sunny bright dandelion flowers  in the fields.




We found some more horses at a beautiful old farmhouse.  One of them was a young Clydesdale which was being very frisky.  Lots of fun to watch.  The way back to our apartment was uphill and the horses were on the way up and there was a bench to rest on.  The sun was shining, the birds singing and busy and the flowers blooming, bees buzzing.  Pretty wonderful really.  Back at the apartment had a lie down and did some reading in the sunny loungeroom with a cup of herbal tea.

Today started off quite well but had a bit of a struggle walking up the hill.  Seems to vary from day to day but I feel inspired to get a bit fitter to be able to enjoy both some free time here and the holiday to come after finishing at the clinic.  Also it will improve circulation and my immune system.  Good for the spirit as well to be outside enjoying Spring.

Surviving and Thriving.

Linda

Post 2nd Removab

The most wasted day of all

is that during which

we have not laughed.

~Sebastian R.N. Chamfort









This is the second day after the second Removab treatment.  Fortunately, even though it was double the dose, the reaction was not as severe but enough to be classed as a 'good' reaction.  Not as much tremors or nausea, good high temperature to 39.8C and with the usual splitting headache.  Very tired from the treatment and slept most of yesterday but was well enough, just, to walk back to the apartment.  Good to get some circulation going after lying down for pretty well 36 hours.  Still a bit tired and weak today but no nausea except after eating and the headache is gone.

The weather today is lovely, finally some consistent sun and it is much warmer.  The bumble bees are buzzing around and the birdsong was most cheerful this morning on the way to the clinic.  They are busy with nest building in the many little birdhouses people have put in the trees and on posts in their gardens.  More tulips have come out as well as pansies, daffodils and hyacinths.  The extremely green grass is sprinkled with bright yellow dandelions, little white daisies and some light mauve flowers thrown in.






The day before the last Removab I was feeling quite good and we went for a walk in the forest.  It is just across the road from the clinic although the first section is along the road.  It was lovely.  Lots of birds although they were flitting by too quickly to see very well but their song could be heard.  The deciduous trees have not yet got their spring coats on and so, unlike in the village, it is still looking quite autumnal.  There is a "Barrfuss Park" (Barefoot Park)  where the paths have been set up to allow barefoot walks and include muddy, pebbly and shelly sections as well as soft mulch.  Too cold for bare feet at the moment but the path was lovely.  There were other lovely narrow roads and trails and although we did not go very far it was most enjoyable.  Hopefully more to come, too tired today I think but hopefully tomorrow.

Surviving & thriving

Linda

Post Removab

 

Behold the turtle. 

She only makes progress 
when she sticks her neck out.

~ James Bryant Conant









The weather has been cold with occasional rain.  Temperature some days hasn't got above 5C, best day it was 12C.  We have had some sunshine and the weather is set to improve later this week.  The good thing about the cold is that I get to wear a beany on my ever balding head.  For those who have seen the Lord of the Rings movies I am starting to look like Gollum only not as pretty.

As you can see from the photo the gardens are looking lovely and there are quite a few unidentified birds flitting around.  In the garden outside our apartment there are a couple of birdboxes with some little birds nesting.  They look a little bit like sparrows but the two pairs are slightly different. We also saw a couple of pretty little blue birds with white and a black collar.  Lots of other birds but need binoculars to get a good look and we did not bring any.


Some more people arrived at the clinic today which was nice.  An Australian from Canberra and an American from Florida, so nice to have some more people to chat to.  The Australian has the same oncologist as me even though she is in Canberra.

After the last blog entry I went a bit downhill with nausea and pain and generally feeling awful but after some drug adjustments I have been feeling better again since yesterday midday and even managed some lunch at the clinic (first solid food other than toast since the Removab) and some soup for dinner.  Still had pain issues during the night so will adjust analgesics again and of course now have constipation issues due to the anti nausea and analgesic drug increases so need other drugs for that.


There has been a monumental communications breakdown from the clinic regarding my treatment so am angry and very disappointed with that.  I had blood taken today to send to Greece and need to come back for a day in six weeks to get an infusion then.  Probably my best option will be to shorten the Amsterdam stay by one day and fly to Stuttgart, have the treatment, stay the night, fly back to Amsterdam the next day.  I feel disappointed to shorten an already short stay in Amsterdam but I just have to let go of my anger at their bad communication and poor case management and move forward and concentrate on the positive of the actual treatment.

The weather is supposed to be better tomorrow and if I feel as well as today I hope to go for a little walk in the forest next to the clinic in the afternoon.  Removab again the day after so will be lying low again then for a few days.

Surviving and thriving

Linda