Return to Oz

Face your deficiencies and acknowledge them; but do not let them master you. Let them teach you patience, sweetness, insight.

Helen Keller










We are back in Australia and it is taking a while to recover from the combination of treatment in Germany and the long trip home.

My fears for the second Removab were realised. We were very thankful that we had organised to spend the night in the Klinik. The reaction was only marginally better than the first and with the added joy of vomiting and diarrhoea. The day after the treatment was hard as well, although there was little pain, there was extreme exhaustion and malaise. The third Removab was on Monday the 18th Jan and we were leaving on the Thursday. The reaction was less on this treatment in terms of pain, shivering etc but the day after was worse. Even lying in bed seemed like too much effort. I could not get comfortable and only managed to sleep intermittently despite the feeling of exhaustion. Too tired to read or listen to my iPod. Yuk.

The trip home was uneventful. Managed to fit all the medications in my suitcase with Glen taking some of my clothes. The main problem was bringing over the Mesenchymal Growth Factor (MGF) injections as they were in vials that needed to stay frozen. So I had a huge styrofoam container with dry ice to fit into my suitcase. In the end almost half my suitcase was filled with medications. At least it did all fit. Glen drove to Frankfurt Airport and with the help of the SatNav we got there without any problems. Had a bit of rain on the way and a bit of snow but the roads generally were pretty safe. Plane didn't leave till 11.30pm, so a long day already, then a 22 hour flight. Only managed 5 hours of sleep on the plane. My sister, Yvonne, picked us up at the airport which was great. It was an early morning arrival and I tried to stay awake for the day to slot into the change in hours but ended up sleeping most of the day and the night.

It's taking a long time to get over the jet lag and treatment. I decided to give myself a little break from the treatment regime I was to do at home just to let my body recover. I was waking at around 4 am every morning and this has helped me to get back into meditation, so there is the silver lining on that cloud. Just started back on Thalidomide tabs two days ago and a new antiviral drug for Herpes 6 yesterday. Thalidomide does seem to help with sleep. I had been continuing with all my supplements such as CoQ10, quercetin etc. The MGF is every 10 days and is a 5ml intramuscular injection. It was due two days ago and I had been worried about giving that to myself. I am used to intravenous injections and infusions through my port, subcutaneous (under the skin) injections and smaller (1ml) intramuscular injections which I put in my leg muscle. The 5ml is too much for my skinny legs and so needs to go into my backside. Those of you who know me also know that my Gluteus Maximus is more like a Gluteus Minimus. I also didn't want to stand up and do the injection as I wanted the muscle relaxed. This meant that I could not look in the mirror to see what I was doing. In the end I just lay on the bed and did it. Wasn't as hard as I thought and I feel much more confident now in doing the rest of the course.

I have worked out my medication schedule following Dr Jacob's treatment plan and will start in earnest tomorrow. I have intravenous injections twice a week which includes Vitamin C with EDTA and magnesium sulphate (for chelation of heavy metals) and glutahione for liver support. Three times a week I have an intramuscular injection of Artesiane which is an anti malaria drug which helps kill cancer cells. There are two different subcutaneous injections, Thymoject and Polyerga, each once a week on different days for the immune system. So I have injections 5 days a week with the weekend off except when I am due for a MGF injection which may fall on a weekend. Then every second day I have Haelan via enema retention (1/2 hour). Not as bad as it may sound and easier than the coffee enemas I used to have. Once a month I also have Zometa via intravenous infusion to help my bones. I have managed to source all the necessary medications that I did not bring back from Germany such as EDTA, heparin, fluid bags and so on. I have a good supply of all my supplements and now have a supplier in the US that now ships to Australia and is very reliable.

Hopefully the treatments I am on will have minimal side effects and I will get some energy back. Tai Chi classes have started and I enjoyed that very much. I managed better than I thought and only got out of breath a couple of times and didn't need to sit down as much as I thought I would. Tomorrow I have an appointment at the gym to see if we can work out an exercise program that will help me build strength and stamina that will be manageable. Getting out of breath very easily at the moment. Even just having a shower can leave me out of breath. I have also enrolled in drawing classes which are once weekly. The meditation course we enrolled in starts on 13th Feb and goes over two months with a total of four sessions. Looking forward to that.

My experience with the Removab has made me even more aware of the need for meditation ( and Tai Chi which is really a moving meditation). When I was in severe pain there was a narrowing of focus - the pain, my pounding heart, my breath and the hope of relief. I tried to focus just on the breath but it was beyond me. Sometimes there was just the pain, totally overwhelming. I have heard it said that the sensation of pain can be reduced by focusing on it as pure pain i.e. not involving the mind, no dialogue - no 'this is agony', 'I wish this would stop' or 'when am I going to feel better?'. I did try that but couldn't manage it. The closest I got was to minimise it to a single focus - the desire for it to stop. Being adept at meditation would have been of great benefit.

What I did learn is that I do the same with other types of pain - emotional/mental pain. My mind builds it up like throwing wood on a fire and so the pain flares and burns more fiercely. Meditation is looking more and more appealing as a way to stop the mind inflaming difficult situations or feelings or making complexities where there might be simplicity and peace.

Perhaps with the silence and an apparent focus on one thing (e.g. the breath), without mental stories, I will actually be able to open myself, my heart, to the 'whole' and experience expansion, an opening of my heart, like a tight flower bud releasing into full bloom. This idea is appealing but the practicality of achievement seems seriously elusive. Hopefully it is a skill I can learn with consistent practice of meditation.

This is what I feel I must do. It is not enough to survive, I really do want to thrive - to feel the fullness of being alive in this world now, in each moment with an open heart, whether in pain or in joy, because regardless of what happens I will feel both. It is said that to be human is to suffer. While I agree that we all suffer as part of living we also feel joy, and in those dark hours we all experience that is a good thing to remember.

Surviving and thriving

Linda

Removab 2

Pain adds rest unto pleasure, and teaches the luxury of health.


Martin Tupper 1810-1889, British Author, Poet, Inventor





Today is the second Removab day. I must say I am not feeling very brave. Yesterday I started feeling better and we had lunch at the Klinik as it was getting late again with my infusions. By late afternoon I was feeling pretty good. This morning I woke up ok but then got very nauseous after drinking some lime juice and hot water. Had to take a Zofran. Oh well.

Truth be told, the last few days I have been feeling anxious about having Removab again today after such a horribly 'good' reaction last time. This morning I remembered some words of wisdom from a DVD I have by Loretta Le Roy called "the Joy of Stress" in which she says that you are guaranteed to suffer so.... why practice? I love that. Harder to put into practice than that simple idea might seem to indicate, however. Too much brain chattering. Nevertheless, it is something worth reminding myself of regularly and it also brings some lightness and laughter to what could be made, by my mind, into a somewhat grim situation.

Practicing suffering does seem to be a pretty common condition. Many of us seem to be constantly worrying about possible future scenarios that may or may not occur or past ones that we can not change. Future speculation has some place, I think, in making some possible necessary preparations. A bit like taking an umbrella if it looks like rain. However, we then need to let go and live more in the present. Preparations are not always necessary or useful. We seem to waste so much of the good in the present by worrying about the 'not so good' in the past and the future, both of which are pretty well out of our control anyway. If we live more in the present we may become calmer and more centred and be more able to deal with any adversities that may arise. We may even feel, in much greater depth, the good things that are in our lives now. If we walk down a beautiful garden path thinking about the rain tomorrow how much of the garden do we really experience as we walk through it? If we worry about a rock we may stumble on and break a leg over then we may not go out into the garden at all, or walk through it in such a state of tension and anxiety we may as well not be in the garden. If we spend all day contemplating our navel we may miss the garden as well. Or is that just another sort of garden?

Knowing all that, I still keep looking at the drip stand and the clock in trepidation for what is to come. Unfortunately, I don't think 'practicing' suffering makes me any better at it. The practice of meditation on the other hand .....

On a lighter note, it was snowing this morning and the snow shovels were out in force. It was also colder, the temperature having dropped back down to -6C. The news is full of horrendous conditions mostly in England and Germany but it does not seem too bad here. It just looks beautiful, smells lovely and softens all sounds other than the yummy crunch of snow underfoot.

Meantime I strive to survive and thrive remembering not to do too much striving and to look and feel around me in this lovely garden of life. When I stop and take my work ethic attitude out of striving it becomes joyous as well. I cannot wait till I am feeling better to live, I need to embrace life now as fully as I am able.

Survive and thrive

Linda

Tea Gardens (Oz) and Hallwangen (Germany)

May the stars carry your sadness away,
May the flowers fill your heart with beauty,
May hope forever wipe away your tears,
And, above all, may silence make you strong.

Chief Dan George
American Indain




More than a month has raced by since my last post. As usual full of ups and downs. I will do a quick fill in before the new start in Germany.

Early December we headed off with the dogs (left the cat with Louise, our wonderful house sitter) to Hawks Nest, about 200 km north of Sydney. There are actually two villages there - Tea Gardens on the Myall River, which is where my parents live, and then Hawks Nest across the Singing Bridge. It lies on the east side on the ocean with a gorgeous beach, on the south west side on Nelson Bay with its dolphins and on the west side on the Myall River. It is great because if it is windy on the ocean beach we can go to the bay and swim there where it is sheltered from the north easterly winds.

I hadn't seen my parents for about 8 months so it was wonderful to see them. The three weeks there went by very quickly. The house we had rented was flea infested so we were able to choose another house that was available but it didn't have any fly screens - not good if you want fresh air. We ended up in a lovely house in Tea Gardens near the river. As it turned outI spent a lot of time in bed so it turned out to be really comfortable with lots of fresh air and a short walk to the river. Just after our arrival we had dinner at a local restaurant on the river with my parents, very enjoyable.

Chemo therapy continued with a day trip back to Sydney, very tiring for Glen driving and for me feeling unwell from the chemo. Meantime I had also started Thalidomide and Artesunate which is an anti malarial drug that was tested effective in the Greek blood test results for promoting cancer cell death. I was giving myself the artesunate by intramuscular injections three times a week. I am still on monthly Zometa for bones as well as intravenous vitamin C twice a week, increasing the dose from 30g to 45g. Managed to get in a few dinners with my parents as well as lunch and we made them Christmas lunch. That went well other than mum had a little turn and we had to call the ambulance. It all turned out ok in the end so that was good. Gave us all a scare, especially mum. The combination of the thalidomide, Artesunate and the chemo Gemzar made me feel pretty unwell so we didn't get to the beach as often as we would have liked. When we did it was beautiful. I swam in the ocean one day but my legs went all rubbery from jumping over and under the waves. On the bay it was a bit easier but there is really nothing like swimming in the surf, it is so invigorating.

We returned to Sydney on the 26th of December and on the 27th we went to a friends 50th birthday down in the Royal National Park in the south of Sydney. It was at a lovely little cottage in the bush and right on the water. Enjoyed catching up with some friends as well as the beautiful scenery. I had more chemo on the 28th. Had contacted Dr Jacob by then and had decided to stop thalidomide and Artesunate so that I would be well enough for the flight to Germany on the 4th. Even so things didn't go as well as planned and we had to cancel the New Years Celebration we had planned with friends on the foreshore of Sydney Harbour to watch the 9 pm fireworks. Just as well as on the 31st I had severe abdominal pain and ended up in hospital for a few days. Great to get iv pain relief and the ultrasound and CT scan I had while there showed no reasons for the pain. Deduction was that it was probably biliary inflammation. Went home again on the 2nd of January feeling weak but otherwise much better.

The good news while in the hospital was finally getting the second opinion on the PET scan - NO detectable tumours!!!! So all the 15 visible tumours are gone - wow. Great way to start the new year. The blood results from Greece showed there are still lots of active cancer cells in my body so that will be the challenge for the next lot of treatment.

We left for Germany on the 4th January and the flight went much better than expected. They moved us to better seats and we got quite a bit of sleep and it was only about 1/2 hour stopover in Singapore. We got to Frankfurt at about 5.30am and were in our little red Kia rental car by about 6.30am. The temperature was minus 11 degrees centigrade and there was much less snow than we had expected. Glen got us on the autobahn before I had even got the satnav working. The roads were clear of snow but the countryside and houses had a nice white layer on them so it was very pretty especially once we got off the autobahn and into some more forested hilly country. It was dark till about 7.30am when it started to lighten up but was not fully light till after 8am. We stopped at a petrol station and got a lovely hot chocolate and a nnot so lovely sandwhich. The autobahn was just as we remembered. We would be travelling at 120 km/hr and cars were passing at at least double that speed. Incredible. Once we were off the autobahn we travelled along some quite narrow roads that were very picturesque. I must have put in the wrong road in the satnav because we ended up in a little lane with no houses, buildings or anything really and the satnav said "you have reached your destination". Well not quite. I reconfigured the satnav and we were soon at the right place. Herr & Frau Ziegler were very welcoming and our apartment was a pleasant find, very spacious. The lounge room is positively huge and there is a separate kitchen/dining room, two bedrooms and a spacious bathroom with a large bath as well as a shower. We were very tired from the 22 hour or so flight and then the 2 1/2 hour drive. A hot bath was very welcome. We walked to the clinic, a very pleasant 500m walk through the snow covered street. On arrival we saw some familiar faces but I had no treatment. Dennis, the head nurse, who we knew from Bad Wiessee, gave us a tour of the very substantial clinic. It is all very nice although the pool is not yet ready for swimming. We went back to our apartment and managed to stay awake till about 6 pm and then were out for the count.

On the 6th January I had the antibody treatment, Removab. It took 9 1/2 hours to infuse. We ended up having lunch at the clinic, the food was great. Reactions to the antibody are expected at about 6 hours but I still had no reaction at 9 1/2 hours so we went back to the apartment. An hour later the reaction started - not very nice. Severe abdominal pain, nausea, headache, joint pain. By 9.30pm we had to ring the clinic. The mobile phones didn't work so Glen had to go upstairs to the Zieglers and they rang. I ended up back at the clinic and got some blessed relief for the pain with an iv infusion. Spent the night and till 5pm the next day in the clinic hospital room. Apart from feeling extremely unwell, although with a lot less pain, the room was very nice. The view was of a lovely blue spruce in the foreground, then some snow covered rooves and in the background a gently sloping hill with snow covered meadows and pine trees.

The plan was for me to have hyperthermia treatment but that has been ditched as it will be too hard for my body to cope. I will be having another antibody treatment early next week at double the dose I had this time. Then next Saturday I will be having the vaccine which made me very sick last time so I expect something similar this time. This will be the third vaccine I have had made fromt the tumours taken when I had the double mastectomy in May last year. We will stay at the clinic overnight for the antibody treatment as a precaution. the second injcection is not supposed to cause as bad a reaction at the first but I seem to be a bit out of the norm for a lot of the reactions anyway. If I get pain I will be able to get relief that much faster.

Today I am still nauseous have a headache and very tired. My eyelids are very swollen but improving a bit. Treatment for the headache and nausea don't seem to last very long and I still also have a slight fever. Hopefully I will feel better tomorrow. I have also spoken to the doctor who gave me the stem cell treatment in Bad Wiessee, he is very pleased with my progress in terms of genetic predispositions of the cancer cells so that is good news as well.

So now I will try and enjoy the environment as much as possible and remember the treatment that makes me feel unwell is making the cancer cells even less well.

Thriving & surviving

Linda