Blood test results

Expect trouble as an inevitable part of life and repeat to yourself the most comforting words of all: this too shall pass. —Ann Landers, newspaper columnist (1918–2002)


In other words there is always hope. Things will get better, if we can't physically make something better we can change our attitude to it and it will still be better.
Talking about things changing and improving, I had another blood test yesterday and the results were great. White cells are in normal range now, platelets are well up and liver enzymes are much improved with ALT slightly above normal and the AST in normal range. As my sister Paula said "Awesome!!!" I am very happy as it puts me in good shape for the liver treatment in Frankfurt next week. Feel much less nervous about going and feel heartened by the improvement. Have certainly been working at it with Glen making me three large vegetable juices a day including a green juice (swamp water). Also watching the diet generally, keeping alkaline and also exercising which is supposed to very helpful for increasing white cell counts.

Walked for an hour this morning. We were up a bit earlier and it was a nice temperature for walking when we left at 6:30am, also the sun wasn't up over the hill for the first 20 minutes or so of the walk. Kept a close eye out for snakes but didn't see any. Never get sick of the countryside here, it's just beautiful.

The panorama and the variety of flora is amazing. That is the Sonoran Desert, one of the most species rich deserts of North America. Many of the deserts are mostly sand and rock with little vegetation and therefore also little fauna. The Sonoran Desert stretches across southern Arizona and California and deep into Western Mexico. In the US it's lushest portions are found in Arizona, where violent summer thunderstorms produce spectacular lightening displays and nourish a wide range of subtropical vegetation. Animals take advantage of the diversity for shelter and food. This summer we have seen the thunderstorms but we have not had much of the l heavy downpours usually associated with them. So it is very dry here, well dryer even than usual.

We have seen a few new bits of wildlife. A small lizard, a Western Banded Gecko, which is normally nocturnal but turned up in the house during the day. Very pretty little animal. It seems the only Gecko to reside in this area. There are huge numbers of lizards here, unfortunately they are very shy and very quick so don't get a close look and certainly hard to take a photo. Many of them are from the Iguana family and they look very prehistoric. There are other more skink like looking lizards as well.

Insects are less obvious, get moths at night, lots of ants, Velvet Ants, which are actually wasps and some huge beetles that we thought were small bats at first. We changed our minds when they started flying at us and we ran screaming inside. We also had a Desert Tarantula on the front patio. Unfortunately it was dead but it gave us a good opportunity to inspect it thoroughly. They are nocturnal as well and are more common late August to October. During the day they hide in deep, silk lined burrows. Wow are they big. They grow to about 8 cm.
Fortunately there don't seem to be any scorpions about. My sister's last house 20 or so miles from here had quite a lot of them inside the house as well as outside. They give a very painful bite so I am glad they don't seem to be hanging around here.

Not as much happening around the bird bath at the moment as there has been a lot of human activity. Yesterday huge cement trucks and pumps were there busy pumping cement into the pool. Today there is a lot of quad and trailer work as supplies are moved to the fence line which Jonathan (with some help) is putting up. This will get some snake netting at the bottom and then the dogs will be able to go out whenever they like through the dog door and the pool will be safely behind a fence as well, not that there are many people wandering around out there. Kona likes to swim and it will be good for her rehabilitation post cruciate surgery. The pool will be finished probably by the end of next week and we are looking forward to being able to swim when we get back from Germany.


Tomorrow we are planning to go to Jerome up at higher altitude. It's an old mining town near Sedona. More about that when we get back.

Surviving and thriving

Linda

Day to day

The way I see it, if you want a rainbow, you gotta put up with the rain.
- Dolly Parton, singer (1946- )



Still no word from Germany re my blood test results but I am feeling less stressed about them. Generally I feel better in myself, more energetic and less pain so really it's pretty good. I will have another test next week and see if there is some improvement. That is all I need really to see it improve even if it is still not ideal. Been checking Tony's blog (a fellow patient at the German clinic in May). He is back in Germany and having a very difficult time, makes my dilemma seem a bit minor.
Went for a lovely walk yesterday morning with Paula and Glen, the weather was pretty mild, around 90 degrees F I think and cloudy, so pleasant for walking. We had a bit of a slow start as the dogs escaped from the house and were running rampant through the wash. A bit of a worry as Kona is recovering from cruciate surgery and needs to take it easy and Mack has not been snake trained yet so is in danger of getting too interested in a rattle snake. Roxy was ok but was leading Mack astray. Managed to get them all back inside without any major problems. We think Mack has learned to open the back door in the kitchen. The fence will be going up over the next couple of weeks with snake proof border so that should allow the dogs more space without the danger.
This morning went to Taliesen West (Frank Lloyd Wright's house) where we dropped Glen off for a one and a half hour tour while Paula and I went to look for kitchen splash back tiles. Ended up going to REI, a favourite shop, and I managed to buy another couple of clothing items that actually fit. Am now pretty well set in the clothing department. Just need a pair of jeans.
There are big storm clouds building over the mountains but looks like we will miss out on the rain again.
Watched the second last leg of the Tour de France this morning on computer, so that was a bit of fun. Just reading and relaxing the rest of the time. Life is good.

Survive and thrive!

Bird bath activities

Through experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired, and fight restored. —Helen Keller, writer (1880–1968)


Received my blood results and was very disappointed. White cell and platelet counts were quite low and liver enzymes high. Have emailed Dr Jacob to see if this will affect my liver procedure and if I should retest next week to see if there is any improvement. She has already replied but not sure if she has given general advice as they could not open the document with the test results. In any case she said my white count needed to be greater than 3, which it is at 3.5 and haemoglobin greater than 9, which it is at 12. She said liver enzymes can be elevated but not how much and I am not sure if she saw my actual results. I have resent attachment as a word document instead of the pdf so hopefully they can open it and respond again with advice.

The rest of yesterday, after the long walk, was pretty restful. Lots of workmen at the house with the pool being built and there are still deliveries of furniture and rugs as the house is still so new and not fully settled in yet. Watched the movie 'Burn after Reading'. Definitely not as good as 'Fargo' but kept us entertained for a bit. Not very uplifting.

What is uplifting is watching the passing parade of birds and squirrels at the bird bath. It is really busy most of the morning then it goes quiet for most of the rest of the day although there are still some bird visits. There is a humming bird feeder in the small tree above the bird bath and the hummers come for feeds pretty regularly as well. They are amazing to watch, when the sun hits their colourful plumage it takes your breath away.

Apart from the walk the other highlight of the day was going for a ride on the quad with my sister, Paula. It was a reasonably cool evening and there was still a little bit of sunset colour in the sky when we set off. Basically did the same trip as the walk but had to go along the road a bit to get to a place where we could get the quad on to the trail. Was scary in parts but fun. At the beginning of the trail we saw, at just above eye level, a thing flying along that we first thought was a bat but then realised it was a beetle. Got a view like in those nature movies where they film birds in flight and it feels like you are flying right next to them. Also saw quite a few Night Hawks. Their wing movements are a bit like bats and they tend to sit on the trail so got to see them quite close up.

It was dad's 87th birthday so we skyped mum and dad. Unfortunately they couldn't get the sound to work on their end so we combined the skype with a phone call. They were just about to go out for a nice lunch on the river at 'Mum's Restaurant' with a couple of friends. Heard this morning they had a lovely time. Would have liked to have been there in person to help celebrate but I am going to miss both my parents birthdays this year. I will be there in spirit.




Survive and thrive!

Goldfields

I postpone death by living, by suffering, by error, by risking, by loving.
—Anaïs Nin, French writer

Well, I have been busy adding to the first blog trying to get all the background information in but have decided that I want to get on with the day to day journal of where I am now. So my partner and I are in Arizona staying with my sister and brother in law recuperating between treatments in Germany. The house is on 5 acres in the desert surrounded by the wonderful desert flora and fauna, of which there is a surprising abundance. A huge variety of birds from hummingbirds to vultures, many reptiles including rattlesnakes and a lovely little pair of Antelope Squirrels visits the bird feeder on a daily basis.

This morning we went for a walk along a trail in the wash below the house. This is my third daily walk as my energy levels have finally started to improve. We walk a little further each day and managed an hour this morning. The weather has been kind with the temperature dropping to a mere 80F-90F (26C-32C). Don't think we would be able to walk that long if it was really hot.

Managed to climb up a small hill this morning. Got very out of breath but it was certainly worth it with amazing panoramic views of the mountains in every direction with the wonderful Saguaro cactii and other lovely flora in the foreground.

The cooler weather seems to have reduced the number of vultures soaring overhead. Guess there are fewer deaths when it is not so hot. The vultures are amazingly beautiful up in the sky, they are very good at soaring and hardly ever flap their wings, very graceful, a bit of a contrast to a close up view of them.

I am very tired from the walk but feel good to have done it. I have been worried about my lack of exercise. These days it is well known and documented that daily moderate exercise improves outcomes for cancer patients considerably. Also increases white cell count and gets the metabolism going so hopefully will not feel so tired and will get me in good shape for treatment in Germany in August.

Mentally and emotionally I am going ok at the moment. Went into a bit of a slump a few weeks ago due to the unrelenting exhaustion and discomfort at the surgery sites. Generally I had been staying very positive and kept my sense of humour most of the time. Just the odd grumpiness.

I am down to 61 tablets of supplements a day (was on 75 at the beginning of the year), having a couple of vegetable juices a day and plenty of fresh fruit. Probably be good to increase the amount of vegetables a day.

My surgical wounds are a bit slow to improve. Massaging in glycerin twice daily and Scarless Healer once daily. Doing stretches at least 3 times a day as well to try and stop the contracture and allow a good range of movement for the future. Overall am happy to have had the mastectomies.

Last week gave myself three lots of intravenous treatments and today am due for intravenous vitamin C and subcutaneous Thymoject to build immunity. My background as a ,as well as the port, is a lifesaver in terms of being able to do the intravenousinjections myself. Saves a lot of time and money.

Went into Fountain Hills yesterday to get some blood test done in preparation for the liver treatment coming up in Frankfurt on 6th August (trans arterial chemo embolisation). Should have the blood result this afternoon so will be curious to see how I am going with my white and red blood cell counts as well as liver and kidney function after all the chemo. My body was handling it pretty well at the time so I am fairly confident all will be well.

The plan is to survive and thrive!

Background

You are the storyteller of your own life and you can create the legend or not.
—Isabel Allende, Chilean-American writer


I have had quite a few unexpected journeys in my life but I am going to start with my current journey which is the journey to remission of my stage 4 breast cancer. Stage 4 means it has spread through the body. In my case both breasts, lymph nodes, bones and liver. The Australian oncologists pretty well write you off. They talk of slowing it down for a while or very aggressive chemotherapy with not much chance of remission. In fact the word 'remission' never even came up. Maybe some extension of life, two years was my quota.

Pre Diagnosis
I had my annual health check in May 2008 with blood tests etc. Included was a breast check and I had a lump in the usual place but maybe a bit bigger. I suffered from fibrocystic breasts so lumps were par for the course.
I had been tired for about a year. I thought I was suffering 'burn out' from work so I sold my veterinary clinic and 'retired'. I started eating more healthily, increased my meditation, Tai Chi and exercise - bush wall king with the dogs - about 4-10 kms a day. Couldn't work out why my fitness level wasn't increasing. Then in June I got a very bad cough for about three weeks and was bedridden and when the cough went so did what was left of my energy. I couldn't walk 20 meters without getting out of breath.

Diagnosis & Proposed Treatments
I went to the doctor and my blood tests were fine but the lump had grown. Was sent straight to a surgeon and he sent me to have scans. The usual X-rays and ultrasounds didn't show much as the 'normal' breast tissue was dense and couldn't be differentiated from any other sort of tissue. Ended up with a breast MRI. This was in July 2008. Results showed tumour in the right breast, left breast, lymph node and sternum. Surgeon referred me to an oncologist specialising in chemotherapy. Further scans showed liver and spinal lesions. Biopsy of the breast confirmed active cancer. I saw the oncologist on a Wednesday and rang him a few days later to make an appointment for further discussion of my options to find I had been booked in for some pretty nasty chemotherapy on the following Monday. I did some research and was not impressed with the effects of the chemotherapy on my type and stage of cancer or on the rest of my body. Keep in mind too that in less than 2 weeks I had gone from not having cancer to having cancer in numerous parts of my body. It was a huge shock for me and my family and friends. Also my energy levels were so bad I needed help getting to all my appointments. I also started having bone pain in my sternum and spine.

Firing the Oncologist
In any case, I ditched the oncologist and found another one. Further scans pinpointed bone lesions in my pelvis and a biopsy of the liver confirmed cancer had definitely spread there. Now some options were discussed. Hormone suppression vs the aggressive chemotherapy. No other options were on the table. The hormone suppression was to be used to 'hold' the cancer and then when it got going again (which apparently it would) the chemotherapy would be used. the same drugs recommended by the previous oncologist. (AC -adriamycin which is doxorubicin and cyclophosphamide). No indication of when that would be or whether or not it would be successful either in terms of cure or any sort of response.We decided on the conservative approach of hormone suppression. and I started pretty well full time research on alternative treatments and a more holistic approach.

What Next

My sister, Paula, came over from the US and helped, my partner, Glen was doing everything around the house and working full time. My other sister, Yvonne, also took me to doctors and cooked yummy, healthy meals. My best friend, Gill, also cooked. There were parents of students at the school where Glen taught who even made meals for us. Meantime I found out about alternative treatments including herbal and homeopathic supplements, diets, meditation, Chinese medicine and so on.
Glen and I attended two retreats for cancer patients run by people who had overcome cancer and who used a holistic approach. The first one we went to was with Petrea King and ran for 5 days. It was a relatively small group and the retreat consisted of yoga, meditation, lectures, interactive , nutritional information and so on and healthy food provided.
The second retreat was a larger group at the Ian Gawler Foundation near Melbourne. It lasted 10 days, had a stricter nutrition regime and more confronting (for me) interactive exercises and a strong emphasis on meditation. Massage was also available at both venues. It gave us a whole lot of information, time to catch our breath and be looked after and skills to help us deal with the situation we were in.

Finding the right GP

I needed a GP who was not only open to and accepting of a holistic approach to cancer but who actually had knowledge and experience in this area. They are thin on the ground but eventually I found a great Doctor who was up to date and experienced in dealing with cancer in a way that suited me. I started intravenous vitamin C injections. Eventually was doing them myself at home but in the end my veins were too hard to find. I had a port put in just before going to Europe for a holiday (river cruise and visiting relatives in the Netherlands) and possible treatment in a clinic in Germany. Meantime the diet focused on vegan and alkaline with lots of brown rice and vegetable juices. Coffee enemas also became part of the daily routine and I was taking about 75 tablets a day of various supplements, carefully researched and checked by the new GP. Most of the supplements had to be imported from the US. Also imported an intravenous herbal concoction called Ukrain from Austria which I was giving myself straight after the vit C injections. I had also started to see a traditional Chinese medicine doctor but after about 6 months had to stop as the herbs were causing severe diarrhoea.

The Clinic in Germany

Scans done in Australia just before I left for overseas showed the cancer was relatively stable. However I soon noticed that my left breast, which had the smaller 2cm tumour, was growing in size quite dramatically. We arrived in Prague to start our tour but first flew out again to Munich for a day to go visit the clinic proposed for possible treatment. We met the doctor and were impressed by her wide based knowledge, enthusiasm and positive attitude. It didn't hurt that the clinic was in a gorgeous part of Bavaria in southern Germany just near the border to the Austrian Alps. So blood was taken and the results would be known in 10 days. So I was due back on May 11 to start treatment based on the results of the test. The idea was that various types of therapies would be tested against the cancer cells harvested in my blood and various genes would be examined for problems. This meant that instead of an off the shelf chemotherapy agent being used the treatment would be specifically tailored with chemo and immuno agents that my cancer was susceptible to. Another major benefit at this clinic was an emphasis on reducing side effects and supporting the body to also fight the cancer. Only low dose chemo was to be used.

Apparently one of the problems with cancer is that there are a whole lot of dormant cancer cells in the body that are not recognised by the body's immune system and are not affected by chemo. This is why so many people have recurring cancer years after and apparent cure. Anyway, there is a protein in embryonic stem cells that latches on to the dorman cancer cells. This enables the dormant cancer cells to be recognised by the body's immune system which can then kill them off. So I have had an injection of the protein (AS$8000) so that should take care of the longer term problems. There is a marker in the blood that shows the level of dormant cancer celss and so a blood test can be done to see if the injection worked and then regular follow up tests ensure they don't increase again. Apparently one injection is enough in 95% of cases. It is of course very controversial, being embryonic stem cells (they come from Israel) and it is still pretty experimental. Having said that this doctor has been using them for about 5 years with good results. No nasty side effects either, occasionally some itchiness at the injection site.