Chemo revisited.

Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos into order, confusion into clarity.... Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.

Melody Beattie


The time is racing by and I am trying to focus on the positive and gratitude - for what I have - the love of family and friends, a nice place to live, lovely pets, a pulse. Well I think that last one is both funny and relevant. If not for the excellent treatment I have had I would likely be dead or dying now. Another patient we met in Germany, Frank, has died. It was a shock, we thought he was doing well. He developed complications. Many cancer patients do, the treatment is hard. It is a sad loss, Frank was a bright, warm and friendly guy. It must be a very difficult time for his wife, Lori, and our deep sympathies go out to her. It is a reality check too for those of us still working towards getting well. Again, really reinforces the idea of making the most of what I have now and enjoying life as much as is possible with whatever physical discomforts I may have. Maintaining a positive outlook and a sense of humour becomes a priority.

On that note, I had a wonderful birthday picnic. More people than I expected turned up with some nice surprises. The weather was great and I had chosen a lovely little park right next to the Kurringai National Park just where McCarrs Creek runs into Pittwater (a beautiful bay in the north of Sydney). It was a excellent mixture of family and friends and dogs. I had purposely picked a dog friendly park and we took our smallest dog Pip Squeek. She behaved herself pretty well other than eating little Theo's (my niece's 1 year old) cheese and avocado sandwich which she then proceeded to throw back up. It was a great way to celebrate reaching 58 in a reasonably well state and getting better with a good chance of being better still for the next birthday.

There were also many lovely birthday wishes for me on Facebook which was great. I am really appreciating good wishes from people a lot more these days, I can really lap them up. Also got some really nice cards.

My sister, Paula, arrived from the US so that was wonderful. After a couple of days she went off to visit our parents for a while. Now she is back and showing some friends from the USA around Sydney and the environs. I think they are having a pretty good time and I get to see Paula every day for a while.

I knew I had to have more chemo when I came back to Australia but I had been putting it off as I knew it would make me feel sick again. I actually had about a week or so of feeling almost normal. Walking the dogs for just over a kilometer every day, doing some gardening, staying up and out of bed almost all day with maybe a little lie down in the afternoons. Great change from lying on the bed most of the day. It was nice to get a taste of being well. Made me want more of it. Finally I had some chemo last Thursday and have been pretty sick ever since. Yesterday I started to come good. Had the usual nausea, exhaustion, breathlessness. After a few days I was actually ok as long as I didn't do anything. Having been better than I had been for about 18 months, just before the chemo, I started feeling impatient with being sick and having to go through more treatment. So my aim is to be really well and have finished treatment by the middle of next year. I know I have some treatment coming up in July but I want to be in much better shape and for that to be the last difficult treatment I have. My vision for the future if you like.

Meantime I have also been caught up in household chores and maintenance, tax issues and so on. Starting to get on top of things and hope to have everything pretty well sorted by the end of next week as we are going up to Hawks Nest for 3 weeks with the dogs. It is a lovely seaside spot with a river, a beautiful bay and the ocean all in one area. My parents live in the next village,Tea Gardens, and I am really looking forward to seeing them as I have not seen them for about 8 months. We will be back home on the 27th of December and then off to Germany on the 4th of January.

Had blood taken last Monday for testing in the laboratory in Greece to see how I am going and if any of the cancer sensitivities etc have changed so that a new treatment plan can be formulated. Routine blood test was pretty normal. Slight increase in cancer marker from 25.1 to 31 which was disappointing but still pretty low. White cell count was in normal limits but on the very low end. So that would have gone down again with the chemo. Need to get that checked again. Everything else was normal, the critical ones, liver and kidney function, were fine. Obviously plenty to be grateful for.

The garden is doing reasonably well. Needs some work, which I am looking forward to. Did a bit when I was feeling well and enjoyed it thoroughly. Nothing like watching plants grow and thrive and provide habitat for various little creatures. The Jacaranda has been flowering with its beautiful purple haze. There are about 10 in our street and they have been particularly stunning this year. My favourite little flowering Eucalypt has started flowering early and it's orange flowers are exquisite, the colour just luscious. It is still full of lots more buds so should be very spectacular as they open up.
Surviving and thriving

Linda

An Aside

The Egel

Prickly back facing the world
Soft underbelly
held close to gentle mother earth
Or curled into the centre
unreachable.

Sometimes there is a change
Prickles becoming soft feathers
Leaving the earth
Eyes sharp and clear
Unafraid
Power surging
Reaching higher.

Sometimes
I am both at once
A contradiction.

-Linda de Haen


The word Egel is dutch for hedgehog. When read as an English word I would pronounce it the same as Eagle. I like this concept and sometime ago wrote a poem about my feelings around the differences between these lovely creatures and the analagies that I drew with my feelings at that time that still resonate for me now. The word play on Bald Eagle and bold Eagle also intrigues me.

I find both animals incredibly fascinating. That contrast of the hedgehog curling up and protecting itself from danger and its low to the ground view of the world, dealing with whatever comes up along its path. Then the soaring openness and power of the eagle with it's clarity of vision and view of a bigger picture from the airy heights of its flight, diving down very specifically at what it wants. One is prickly and gentle the other has soft feathers and is fierce. Such contrasts within and between them. Both have great and very different survival skills.

The picture of the Bald Eagle was taken near my sister's place in Arizona at a regular haunt next to the Verde River quite near a highway. I don't know where the hedgehog photos came from, so I can't acknowledge the photographer, but they are adorable.

I was reminded of the poem because of the mixed emotions I am feeling at the moment. That anxiety and fear and wanting to curl up and not deal with the perceived 'threats'. On the other hand I feel strong and fierce and want to soar through life. I am aware that I need to accept both those parts of me and and nurture them. It is fine to be a contradiction and feel contradictions in the same moment. That is my life, for me, at this time.



Survive and thrive

Linda

Being me, being home

The art of being wise is knowing what to overlook.
- William James


It is easier to be wise for others than for ourselves.
- Francois de la Rochefoucauld



We have been home for just over a week and there are mixed feelings, events and emotions. Medically it is business as usual, some ups and downs and the inevitable waiting for results, progress and revised plans. The house has needed various items attended to and then there is the 7 months of backlog of paperwork. The physical is pretty closely related to the medical with generally better energy but some setbacks with symptoms and tiredness. There has been a renewed realisation of my weakened state. Mentally and emotionally there seems to be a fair bit of fragility.

First my visit with Dr Fluhrer. I had printed, in my chemo brain memory bank, that the appointment was at 1.30pm. So I got up at about 5.30am did some yoga, meditated for 30 minutes, had a shower and walked the dogs before breakfast. At 9 am I thought I had better check the time and the appointment was at 9.45 am. Ooooops. Major rush out the door not properly prepared with written list of questions. Managed at least to take my list of current medications and supplements and the copy of the PET scan. Stressed and flustered I got there right on time. One of the things I like about Dr Fluhrer is that he is very pleasant and gets straight to the point. He also answers questions really well, the problem for me is remembering to ask the questions. Anyway the short version is that I go off all tablets, except Arimidex, for 10 to 14 days to give my stomach a rest and hopefully ease the gastritis. Meantime run general blood screen and include test for Helicobacter, Candida (in case they are the cause of the gastritis) and the tumour markers. Hopefully will have results by end of the week. Meantime he will email Dr Jacob in Germany and confer regarding rerunning blood test for Greek lab. This is basically the same test I had in April prior to my treatment in Germany starting. It is a very comprehensive test. My understanding is limited on the complexities of the test but basically it looks at the cancer cells - their genetic aberrations and their sensitivity to various chemotherapy, immunotherapy and supplemental treatments. This has most certainly changed since the treatment started and the tumour cells may now be resistant to some of the treatments that they were previously sensitive to. Blood may be taken next Monday for analysis in Greece. It will then be a few weeks before we get the results on which a new treatment plan will be based probably for the next 6 months although there will always be adjustments to the plan as necessary depending on my responses. More waiting for now.

House, and pets, has been pretty well looked after by the house sitters but there is still the inevitable build up of minor repairs and maintenance. The aquarium was not intended to be left for so long so I had only left instructions for shorter term maintenance. It is to the house sitters credit that any plants and fish remained alive at all. Major overhaul performed. Then I was just going to get some little Neon Tetras to put a bit of colour back in the tank but I don't know how I thought I would be able to visit the aquarium shop and not get sucked in to some lovely other fish. So, three discus and 4 gouramis (as well as the neons) later.... the aquarium looks much better and I felt 'fluffed up' (a Petrea King expression for the necessary positive input for the chronically ill - actually for everyone - we all need it from time to time).

The mail, 7 months worth. Some I didn't even open, just filed them in the waste paper basket. Others were a bit of a freak out. House insurance overdue, car registration and insurance completely out of date. Very lucky nothing nasty happened. So now I have opened all mail and dealt with the really urgent stuff. The rest will just have to be done a bit at a time.

Couldn't really get into the garden shed to get to the pool pump so did an instant cleanup of the shed. Many of the indoor plants had died so cleaned out the pots. The garden needs a major prune. I tried to prune a smallish daisy bush out the front. Normally I can just pull them out of the ground but I was too weak. So I started to prune it back. Got about half way and had to give up totally out of breath. That was a serious reality check into what a weak and muscle wasted body I now have. Very disheartening experience. Moving right along to the gardener - he will do the pruning. The power of delegation, there is strength in that! There are some beautiful flowers in the garden and Yvonne bought me a gorgeous pink Hydrangea.

My wardrobe. How fortunate that I had kept some 'thin' clothes in case I lost weight. Out with the 'fat' clothes and resurrection of the 'thin' ones. Hallelujah! With the clothes Paula gave me, some new ones I bought and what I saved I have a pretty full wardrobe. I was going to get some new swimmers. Paula gave me a nice pair of hers but thought I could do with another one for the beach holiday in December. Ha! Don't need to buy a thing. Nothing like a pair of scissors to get rid of some big busted cups and end up with a more svelte pair of swimmers.

Emotionally - a bit scary. Have been much more anxious since I have been home, not sure why but maybe to do with the fact that this is where I got cancer. That is, I relate home to getting cancer not getting rid of cancer, memories of the diagnosis rather than the treatment. However hard the treatment has been the diagnosis was extremely stressful. There seemed to be little hope at that time, especially after talking to oncologists. The treatment has been very hard but it is much more positive and hopefull. The other problems is the feeling of overwhelm with all the paperwork, house and pet maintenance, shopping (even when done on the internet). Just the day to day stuff really but it feels like a lot. Need to be patient with myself and not try to do too much at once. It is more difficult too as Glen is HSC marking, for a week or so, full time. I have become very dependent on her care and it is difficult to adjust. It is also a reminder of what will happen next year when she goes back to full time work at the end of January.

Physically I have had some bouts of gastritis which always seems to knock me about for a bit. Last one was at 2 am this morning. Pain and nausea - yuk. I am very cranky today so am actually glad Glen is not here. I have been more tired again yesterday and today, maybe I have done too much over the last week. Just go through periods of getting fed up with my limitations and push myself to do stuff, not always the best move. I am able to do more than I did when I left 7 months ago, so that is a positive. Unfortunately I am still finding it very difficult to deal with my physical limitations, just very frustrated with it at the moment.

In view of the above I have rung my therapist for an appointment. Waiting to hear back. That is one thing I have learned, even before I got cancer, if it starts to feel like too much - get help. I have learned to use the resources available, a very valuable lesson that has been.

I am sure I will come out of this trough, I always manage to bounce back, I am like a super ball. Remembering that at a deep level is sometimes difficult but I will survive and I will thrive!

Linda