PET Scan Results

Happiness cannot be traveled to, owned, earned, worn or consumed. Happiness is the spiritual experience of living every minute with love, grace, and gratitude.

Denis Waitley

Fantastic news yesterday regarding PET scan results. Didn't think I would get any results till today as Dr Jacob was away getting final Health Dept inspection at the new clinic site south of Stuttgart. I asked Dr Fluhrer if he knew anything and he phoned Dr Horr and found out that there are no active lesions anywhere except 3 in the bones around the pelvic area. This is amazing. I had 15 active tumours to start with - 7 in the bones, 3 in the breasts (surgically removed with double mastectomy), one lymph node, and 4 in the liver. So in just over 3 months of treatment I have got almost no cancer. As the other bony tumours have disappeared there is no reason to suspect that the ones left won't go as well. I have also had 2 weeks of treatment since the PET scan was done. Dr Jacob is going to ring Dr Horr just to confirm but it is looking pretty good. The general plan now is to get rid of the rest of the tumours and then make sure nothing comes back.
Dr Jacob and Dr Fluhrer are going to work out a 3 month plan. In summary I will have a scan in January and all will be reassesed but at this stage the plan is to come back to Germany in January 2010 for another vaccine and probably and antibody injection to knock out any stem cells. I have had a vaccine today andmay still have an antibody injection as well this week before we leave. I will know more detail tomorrow when the plan has been nutted out.
Last night we went out with Susan and Curtis to celebrate at the Seegarten Restaurant on the lake. We had a lovely time. Dr Jacob is talking about a party on the weekend to celebrate the success of my treatment.
My cousin Joke is arriving from Holland today for a few days so that will be nice. Hopefully will finish on time at the clinic to meet her at the Gmund railway station but never quite sure what time I will finish.

Brauhaus

Happiness doesn't depend on what we have, but it does depend on how we feel toward what we have. We can be happy with little and miserable with much.

William Dempster Hoard

Had a lunch and dinner out yesterday. Nausea was coming in waves by lunchtime so managed to eat between the waves. By evening there was no nausea so eating was not a problem. Had a lovely lunch up the hill at Sonnenbichl Restaurant, outside on the terrace, gorgeous view of lush green meadows, forested hills, the lake and mountains in the distance. The food was also nice. We went with Bob and Astelle, an Australian patient and her father. Afterwards we went for a short stroll in the forest along a lovely mountain stream.

Last night we went out with Susan and Curtis to the Brauhaus in Tegernsee, for dinner. susan drove us around the lake via Gmund and it was very scenic. The dinner too was most enjoyabe - great company, lovely venue and yummy food. The atmosphere is great too, lost of jolly laughing people have a nice night out. We sat outside, it is all long tressle tables and benches and sharing the space. Everyone was very friendly and the weather was agin kind to us.

surviving and thriving

Linda

Wallberg

The pleasantest things in the world are pleasant thoughts: and the great art of life is to have as many of them as possible.

Montaigne

Nausea is continuing but had a great afternoon yesterday. It was a lovely sunny day and another patient who is here with her father invited us to go with them to the next village and get the cable car up Wallberg (a mountain). It was lovely. Perfect weather and the view was fabulous. Great view of the lake we are on and the little towns surrounding it. Could even see Munich in the distance. On the other side were mountains as far as the eye could see including the Austrian alps which still has some snow on some of the mountains.

After we had a good look at the view we went to the Panorama Restaurant which is on top of the mountain and had a lovely lunch. I had mushroom soup made from local forest mushrooms, very delicious.

After lunch we had a bit more of a look around at the view. There is a small rise on top of the mountain with a little church on it and with a viewing platform all around it. The church was closed but the view was great.

We then noticed that there were paragliders launching off from the mountain on the lake side. It was fascinating to watch them prepare and take off. Mostly they were paragliders, a few were hang gliders. Good mixture of men and women and some tandems. There were so many in the sky at once it was a wonder they didn't crash in to one another. When they took off there was a wonderful sound of the canopy filling with air, a swooshing sound. The whole thing was quite mesmerising and we stayed watching them till 4.30 pm. We had to leave then as the last cable car down left at 5 pm and although the walk down the mountain would have been delightful in the late afternoon sun it was beyond my abilities at this point. I now have paragliding on my bucket list! It looks wonderful.

Very tired but happy at the end of the day and went to our apartment contented that we had made the most of a beautiful summers day in Bavaria.


surviving and thriving

Linda

Cancer Marker CA15-3

If I keep a green bough in my heart, the singing bird will come.

Chinese Proverd


Shocker of a day yesterday, severe nausea when I woke up, didn't improve till the evening when I managed a bit of tomato soup. So back on the chemo weight loss program.
Actually better this morning but have deteriorated a bit with the drips today. Still on a drip now but nearly finished for the day.

News is that my cancer markers are way down.
The CA15-3 which is a marker for breast cancer was over 80 when I first got diagnosed. It came down to 47 but then went back up to over 50. Now it is down to 25 so that is excellent as it is an indication of active cancer. Certainly good progress.

White cell count dropped down from 6 to 3 but is now back up to 5. Was taken before the chemo yesterday so I expect it to come down again a bit. It seems to be bouncing back better and faster than in June.

Planning a trip up the mountain with a cable car this afternooon so hopefully I will be well enough.

Surviving and thriving

Linda

Tegernsee

Happiness comes of the capacity to feel deeply, to enjoy simply, to think freely, to risk life, to be needed.

Storm Jameson


Had a big day today. Saw Dr Jacob and Dr Fluhrer this morning. The PET scan CD has arrived as well as the translation of the report. CD has been sent on to specialist for second opinion. It seems there are some lymph nodes involved in the upper chest just below the neck and three bony lesions. The axillary lymph node is no longer involved and the liver has not shown any uptake so appears not to be active even though it is visible on other scans.

Also found out that there is a new antibody on the market here in Germany which knocks off the cancer stem cells. The idea is to reduce the tumour mass to reduce chance of developing unwanted antibodies to the antibody and too much necrosis which the body then has to process. so the plan is to continue with the chemotherapy as planned this week and next week and then change to oral medication for the chemo which is two weeks on and 10 days off, for 3 months. Then have some scans and see how I am going and reasses. Meantime I will also have treatment again in Frankfurt with Prof Vogel on my liver.


Every day there is either a new scan report or a new opinion on a scan there is a new tally of the tumours. I am finding that quite difficult. I think I just have to let go of how many there are and aim for none. When everyone agrees to that result I will be very happy.

Yesterday we walked back to the apartment via the lake and spent a little bit of time lounging in the sun in some chairs next to the lake before heading home for lunch and a rest. At 5 pm we met up with Delma and caught a ferry across to Tegernsee where we had a bit of a walk around and bought an ice cream and then caught the ferry back. The weather was lovely and Tegernsee is very picturesque. The two steeples we can see there are part of a monastry that is also a beer brewery. It is also has a restaurant, very good from all accounts and very large. It has a large outdoor area as well as indoor. Lots of people outside enjoying their beer when we walked past. We walked along the stream behind the guesthouse which flows into the lake. Very soothing.


Survive and thrive.

Linda

Another day at the clinic

Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy.

Thich Nhat Hanh


Sitting in the clinic at 3 pm. Have been waiting for several hours to get some neural therapy for the scars from my mastectomies. It is raining again and I am very tired even though I had a good sleep last night. Woke up nauseous this morning but am quite a bit better now. The weather was gorgeous this morning but it is now raining.

I read up a bit on the neural therapy and it sounds very interesting. Apparently scarring can affect the electrochemical function of tissues. So the cells in scar tissue have a different membrane potential from normal body cells. Whenever a cell has lost itts normal membrane potential, ion pumps in the cell wall stop working. This means that abnormal minerals and toxic substances accumulate inside the cell. as a resultt, the cell loses the ability to heal itself and resume normal functioning. Procaine ( a local anaesthetic) is injected and acts on the ccell wall to allow the ion pumps to resume normal action and restore the membrane potential. By re-establishing the normal electrical condition of cells and nerves, the disturbed functions are also restored to normality and health is returned to the area as far as this is anatomically possible. I don't fully understand the process especially where the injection does not need to be at the site being treated. It is related to the autonomic nervous system function but I am not sure of the mechanisms.

Survive & thrive

Linda

Bad Wiessee

A happy person is not a person in a certain set of circumstances but rather a person with a certain set of attitudes.
- Hugh Downs


Woke up to thunder this morning, a good reflection of the night, pretty disturbed. Didn't make it to the bistro last night, Glen made soup. Nausea and bowel cramps most of the afternoon, bad diarrhoea at night. Lots of waking up and not being able to get back to sleep. Still feeling unwell this morning. I am hoping things will improve as the day progresses.

Looks like the rain has set in for the day and possibly the next few days looking at the weather forecast on the net. Can't expect green verdant pastures without some rain I guess.

Clinic is very busy this morning, more new people, all seats are taken and some of the carers are sitting on foot stools. Haven't seen Dr Jacob yet but had blood taken for tumour markers as well as the usual biochemistry and blood cell check. Still need blood taken for vaccine. Haven't seen Dr Fluhrer yet but can hear Dr Jacob so she should start rounds soon.

Surviving and thriving

Linda

Chemo Reactions

Though no-one can go back
and make a brand new start,
anyone can start from now
and make a brand new end.

~ Author Unknown ~


Yesterday didn't turn out as well as hoped. Got severely nauseous about an hour after drinking the prescribed fermented soy drink. Have had problems with this before but we thought it was worth another try at one third of the dose. Not so. Couldn't eat lunch and had to go to bed. I also had some swelling and pain in my liver from the chemotherapy on Thursday that the cortisone was not quite controlling. Also severely constipated from the pain relief meds given for the liver procedure. This precludecd any anti nausea medication as that would have made it worse. I already felt like I needed a ceasarian so didn't want further aggravation. Felt a bit better later in the evening and managed to eat some soup. Passed a brick like structure just before going to sleep. What a relief! The ups and downs of cancer treatment.

Dr Jacob didn't have time to go over the MRI's with me today so hopefully tomorrow. Probably won't have anything definitive on the PET scans until end of the week. It's a waiting game.

Dr Fluhrer will be at the clinic tomorrow and I am looking forward to seeing him. He referred me to the clinic and I had been a patient of his in Sydney for some months. he taught me to do the intravenous vitamin C injections and Ukrain. am sure this, together with diet and juices, kept the cancer in check last year and early this year. He is in Stuttgart at the moment looking at the new clinic which will open the middle of next month in the Schwarzwald.

Rumour has it Dr Fluhrer will start a clinic in Sydney along similar lines. Don't know to what extent he will be able to do the treatments as I think the government regulations in Australia preclude some of the procedures. Would be good if I could do most things there. Will still need to come to Germany for my vaccines as they have to be made up here. It will be a minimum of 10 days stay as it takes that long to make up the vaccines once they have some of my blood. Looks like a three monthly visit at this stage. I think i will be back in Germany in January.

Weather is holding up, very cloudy today but no rain and intermittent sun, also temperature quite pleasant. Hopefully will get a bit of a walk in this evening. we are thinking of going to a little bistro down the road on the way to the lake to try their soup. Can combine it with a walk. We are finding it hard not having cooking facilities or a fridge, will be glad when we change to the apartment at the end of the week.

surviving and thriving
Linda

Frankfurt & Bad Wiessee

Courage does not always roar. Sometimes it is a quiet voice at the end of the day, saying...."I will try again tomorrow."
-Mary Ann Radmacher


Frankfurt went surprisingly well. We had no plane delays so got to the hotel two hours before my appointment for the PET scan. Had a bit of a rest then walked to the hospital. More than half the walk is along the Main River with a cycle and walking path, green grass and trees. Saw some lovely coloured geese on the way and white swans on the way back. PET scan place was hard to find and we got there half an hour late, then it took about 3 hours. I got an injection including a diuretic then had to lay still for an hour (other than going to the toilet every 10 minutes).

Next day we walked to the hospital again for the MRI and trans arterial liver emobilisation with chemo drugs. We saw Professor Vogel prior to the procedure to find out the results of the PET scan. He was in a hurry and first said that there were 3 lesions, then 2 lesions. I was pretty nervous as the last one had been so painful, so I wasn't fully focused and also knew we would talk to him again after the procedure.

In any case this time the embolisation was much easier. I was in theatre and hooked up to the pain relief anti nausea drug getting quite sleepy as there was some sort of delay in with Prof Vogels arrival. More time for the pain relief to work. He then gave me the local anaesthetic in my groin and then disappeared for another 10 minutes. This was great because by the time he came back I had had three quarters of the bottle of pain relief and the local anaesthetic was working well (except for the skin, I still felt the incision with the scalpel). Only felt a short period of liver pain during the procedure, when the chemo was injected. Other than feeling very sleepy I was fine. There was some bleeding post the procedure so the nurses took turns in putting pressure on my groin. An interesting experience. They then put a pressure bandage on which I had too leave in place for 24 hours.

I then had to lay still flat on my back for 4 hours, only moved to have a CT scan to make sure that all was well with the liver after the procedure. By this time I was on the third bag of fluids and was desperate to go to the toilet. I was lying in the corridor at reception at the time and after screeching for attention I was told nothing could be done but I was about to be taken back upstairs to the ward. Fortunately that was true or I would have had to either wet the bed or get up and walk to the nearest restroom. I had to use a bed pan instead. Oh well, that's life in a hospital I guess, I am lucky I am not in that position very often.

Afterwards we went down and saw Prof Vogel. This time he said he could only find one lesion on the PET scan which he said was only really useful for bones and not other tissue. The one lesion was on the sacrum, (I had not had one there last July at the first PET scan) and he wasn't even convinced it was a tumour but could be some inflammation. He also said there were no visible lesions in any lymph nodes. He said PET scans were really only good for bony lesions. The liver had not had any uptake either. By this stage I was getting more and more confused. I asked him to show me the PET scan, but he went too fast past anything other than the sacrum which definitely had a flare. He also showed the previous MRI and the current one and showed the metastasis there, it was not much smaller than the last one, as far as I could see, but he said it was significant. I foound the whole episode totally confusing. I was not mentally compus enough to ask him if that was the lesion he treated last or one of the three he treated first and if it was the one he treated today. He said I needed to talk to Dr Jacob about the results and subsequent treatment which may be more chemo or maybe laser treatment. When I asked what that involved all I got was that Dr Jacob would explain but that it was direct to the liver through the abdominal wall and not through the femoral artery.

We were planning on getting a taxi back to the hotel but it was a beautiful evening, still a bit of sun and warm. so we checked if it would be ok for me to walk and when I got the go ahead we ventured out at a very slow pace. The sun was just setting behind the high rises, there were people jogging, walking cycling, having picnics on the grass, rowing, dragon boating etc. It was lovely. We went past a sushi place and Glen bought dinner while I continued to make my way along the river. It was physically hard but emotionally and spiritually great.

We slept in this morning and had not had breakfast when Peter came to pick us up for the trip back to Bad Wiessee. Glen was still in the shower. We packed our bags and took them out to him and he was very good about waiting for us to have a quick breakfast. Fortunately the 4 hour trip to Bad Wiessee was uneventful and Peter dropped Glen off at Heimgarten Gastehaus with the luggage and took me straight to the clinic.

Aleen and Christoff were there and gave me a very warm welcome. There were still two patients on drips both of whom I knew and I sat next to one and we got each others updates. Aleen started me on some drips and brought some tablets over and I was truly back in the clinic.

Dr Ursula Jacob came and chatted and thought I looked much better than when I left a month ago. We discussed the results and I explained about my reservations re what Prof Vogel had said. She said she would look at the scans (she had to ring and get them to send her a copy of the PET scan) and also send them, including my one from last year, to a colleague who was a specialist in PET scans for him to look and give an opinion. She will look at my MRIs tomorrow. Potentially very exciting, she said if it is true that I only have one tumour left, the one in the liver, she will throw me a party. That would be a bit of fun as Dr Fluhrer will be there as well.
Anyway it will take some time for the PET scan to do the rounds.

We are now sitting in the dining room at Heimgarten as that is the only place we can get internet. Our room is lovely, facing west so we get the afternoon sun. We are at the clinic in the mornings so it suits us. After a week we will get an apartment. Meantime we will get breakfast provided, we will probably have lunch at the clinic restaurant.

Thrive and survive

Linda

Airport Musings

Certain things catch your eye,
But pursue only those
that capture your heart.

old indian saying




O' GREAT SPIRIT
help me always
to speak the truth quietly,
to listen with an open mind
when others speak,
and to remember the peace
that may be found in silence.

Cherokee Prayer



What is life?
It is the flash of a firefly in the night.
It is the breath of a buffalo in the wintertime.
It is the little shadow which runs across
the grass and loses itself in the sunset.

Crowfoot, Blackfoot warrior and orator 1830 - 1890


















We are at JFK airport in New York, waitng for flight to London and Frankfurt. Thought I would put in a few more photos from the last 4 weeks in Arizona. It has been a wonderful time of recuperation shared with family directly and other family and friends over the wonders of the internet. I am also including some Native American Indian words of wisdom that I came across and liked.

There are many sources of inspiration around us if we can just stop and look. Helen Keller said something along the lines 'as one door of happiness closes another one opens, but we spend so long looking at the closed door we don't see the newly opened one'. Cancer, or any chronic, debilitating or life threatening disease can feel like a bunch of happiness doors just slammed in our faces. I am finding that many other doors are open, there is beauty and love and adventure all around us if we can but look, see and feel. 90% of our world is perception and so we have the power to change our world purely by our attitude and how we process our experiences.

Go Forward With Courage

When you are in doubt, be still, and wait;
when doubt no longer exists for you, then go forward with courage.
So long as mists envelop you, be still;
be still until the sunlight pours through and dispels the mists
-- as it surely will.
Then act with courage.

Ponca Chief White Eagle (1800's to 1914)

Thrive & survive

Linda

Jerome & Sedona

Our first teacher is our own heart - Cheyenne Proverb

Listen to the voice of your heart.

Had a lovely 2 days away to Jerome and Sedona. It is amazing the variety of landscape you can see in a day even just because of the changes in altitude and because there are rivers. Did a 4 hour train trip near Jerome, it was fantastic!

The train goes very slowly, probably only about 10 miles an hour and there is commentary about the landscape and the local history eg there are some caves along the way that have ruins of wall from the Indians that lived there from about 200 AD to 1300AD and are thought to be the ancestors of the modern Pueblo Indians. They also gave geological information. On some of the photos you can see the red sandstone contrasting with the white limestone. We followed the Verde River through a canyon. There are some bald eagles that nest there but we didn't see any, we did see a nest. There are also golden eagles nesting in the area. The train was an old train made up of various historical sections including from the old east to west trains that had the 'Harvey Girls' working on them. There is a movie made about them - a very bad movie. The diesel engines were from Alaska. They served snacks and free water and you could by other refreshments. There were some carriages that were outdoor ones with just some wooden seats and covers for shade. The indoor carriages had very comfy lounge chairs and coffee tables. We were lucky in our carriage in that there were not that many people so we could move from one side of the carriage to the other.

The train trip finished at 5 pm and we went to the Mile High Hotel which is a little old hotel in the centre of Jerome with a café restaurant downstairs. They had the rainbow flag outside and were gay friendly which we weren't expecting in a town like Jerome which is more known for it's hippies.

We had dinner at the Asylum Restaurant (a restaurant on the edge). We dined el fresco and had a magnificent view of the valley below and more mountains in the distance towards Sedona. The food was great as well.

Next morning we had a lovely breakfast downstairs in the café and then headed towards Sedona. The area at Sedona is supposed to be good for healing and has several vortexes which are areas of energy that some people believe helps overcome disease. Certainly our walk at red rock along the river to a magnificent view of Cathedral Rock felt very soothing. Could hear the laughter of children playing in the river, dogs barking, people generally enjoying a day out by the cool river and the shade of the trees. We walked a little further and all was quiet except for the running water and the sound of the birds. Someone was kind enough to take a photo of the three of us with cathedral rock in the background.

The red rock formations all around Sedona are gorgeous and in places contrast beautifully with the white limestone hills. Even the view from the car park near the café where we had lunch had a stunning view. We drove up through the hills to the beginning of Flagstaff and we were suddnely surrounded by tall pine trees.

During the drive back we first descended into a valley again with low desert flora and then up some more mountains with tall trees (The Rim) where we had camped on a previous trip. Then down again to the desert. Once the altitude really dropped we got back to the tall Saguaros (cacti) which are so dramatic in the area where my sister lives.

All in all a fantastic couple of days, exhausting but thoroughly enjoyable. Yesterday we spent packing and washing clothes ready for out trip to Germany. We leave today. Next post will be in Germany.

Thriving and surviving.

Linda