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Monday, April 30, 2012

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


Saturday, April 28, 2012

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


Tuesday, April 24, 2012

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

Saturday, April 21, 2012

Abraxane Chemo and on to Germany











Worry is the darkroom in which negatives are developed.
~ church billboard in Colorado




The Abraxane treatment did not go as well as I had hoped, got very sick after the last treatment.  Was pretty well bed ridden for 8 days then started to improve.  Lost a lot of hair in the process.  My stamina and ability to go for a walk has also diminished.  It also meant that getting ready for the trip to Germany was a bit more pressured as things got left to the last minute and squeezed in between my usual infusions, coffee enemas and saunas.  Came across the photo of the cat sleeping when I was spending a lot of time in bed and felt very in tune with the comments,  I was very busy at a cellular level.  Great photo and comment for anyone going through chemo or serious disease or treatment.  Brings a smile to my face every time I see it. It's always good to see the humour.

The other problem with the Abraxane is that it does not seem to have been that successful.  Although it is guess work at the moment.  Certainly the pain has reduced but the cancer markers which reached 1554 have only come down to 1120.  The oncologist said this can be a good thing as ones that come down very quickly do not necessarily stay down.  Not sure if this is true or he is just trying to reassure me.

We are now in Germany.  The flights were uneventful but tiring.  We had plane changes in Bangkok and Madrid which went smoothly.  We had booked a hotel at the airport because there is also a train station right there and thought it would be good to get a night's sleep before the train journey to the clinic.  We were certainly glad we did that.  Gave us a chance to start to get the time difference under control and to rest.  Also got the train tickets the afternoon we arrived so knew when we needed to leave and found a nice little restaurant that served yummy broccoli soup and also we could choose our own ingredients in the morning for breakfast and a take away lunch.  Much cheaper than eating in the hotel.

The train trip was fine other than having to change trains twice. Not much wait between trains but a bit of a pain with the luggage.  The trip lasted about 2 1/2 hours and the last 1 1/2 hours in the same train was very nice.  The train had very big windows and after traveling through some nice flat country side with intermittent villages we headed into the hills and up into the Schwarzwald.  Often there would be mountain streams we followed and lovely little villages with typical old German buildings.  We caught a taxi from Freudenstadt to Hallwangen and our apartment.  The apartment is a flat beneath a house where the owners live.  It is quite a common method of holiday accommodation in smaller tourist areas in Germany it seems.  Generally cheaper than hotels and it means you can do your own meals which is a big saving and allows a healthier diet.  The apartment is lovely with a loungeroom, kitchen/dining, bedroom and bathroom.  All rooms except the bathroom face south onto the garden and we get the sun coming in when it shines. The owners are very nice,  friendly and helpful.

Hallwangen is up on a hill overlooking a valley which is quite pretty except for an ugly factory in one spot.  I guess it is good for employment in the area.  We can see Dornstetten and Freudenstadt in the distance but mostly verdant meadows and some patches of forest.  The clinic is right next to the forest and I am hoping to be well enough to do some walking in these beautiful pine woods.  The weather is colder than we expected 3C to 12C  degrees and today the wind has sprung up to make it feel colder.  There has been rain forecast for the time we have been here but we have only had some today although it has looked very threatening at times.  We have had some sunny periods and the spring bulbs are flowering in the gardens we pass on our walk to the clinic.  Tulips, mostly red and yellow, daffodils and hyacinths as well as pansies and other flowers I don't know the name of, very pretty in any case.

After unpacking on the 18th we headed to the clinic and met the doctor on duty who is Australian with a German background so fluent in both languages.  Really nice doctor who seems to be very competent.  My usual doctor is in Dusseldorf setting up a research centre.  They keep in touch via phone.  In any case we worked out my treatment plan and I started treatment the next morning with a Removab infusion.  This is an 8 hour infusion that in the past has made me very ill so I stay overnight at the clinic in one of their hospital rooms.  It all went well in that I had a 'good' reaction.  This involves getting a high fever (upto 40.4C) but feeling freezing cold and shaking like a leaf for almost an hour.  Then nausea, headache and itchy skin.  All more or less controlled by more drugs.  I slept well that night with the help of a pill but was a wreck the next day (yesterday).  Too sick and tired to eat or read so just dozed all day.  The good thing about treatment here is that they consider all the body functions so infusions are given to support the circulation, liver and nerves.  This does not happen in Australia with chemotherapy and I think it should.  We caught a taxi back to the apartment at about 4 pm as I was too sick still to walk back.  Managed to eat a banana and have some tomato soup with a little rice in it.  Got through the night quite well, woke up a lot and sweated profusely but otherwise ok.

Feeling much better today and managed to walk to the clinic for further supportive infusions including Hepamerz and Glutahione for the liver,  Alpha Lipoic acid for the nerves, Fishoil for inflammation and assist detox and Magnesium which was a bit low.  Lots of blood taken at various times to check all is well and see progress.  Also got laxatives as the anti nausea treatment causes constipation.  Might have a coffee enema tomorrow.  It is 1 pm and hoping to leave in the next half hour and have lunch at the apartment and may get a start on my new embroidery that I brought along.

The plan is to have another two Removab treatments about 5 days apart and if I am recovering well maybe have some days off from the clinic between treatments.  I will continue with back physio on Monday probably unless I have the day off then.  Want to have plenty of supportive treatment so I am well enough to enjoy the holiday after treatment but would like to have some days off if this does not compromise my wellbeing.

Surviving and thriving
Linda