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

Goodbye Arizona

"And in the end, it's not the years in your life that count. It's the life in your years."

~ Abraham Lincoln










Back in Sydney for a couple of days now, recovering slowly from jet lag. Was a wrench leaving my sister, Paula, but then I got to see my other sister, Yvonne. Paula and Jonathan were truly amazing in opening their home to us. They had literally only just moved in about a week before and then had us staying for a month in July and then two months September and October. It was lovely, very relaxing and a good time for recuperation. We know we will be back there, hopefully for a holiday rather than a recuperation! The last few days we had a few rides on the quads down to the barn to see the horses.

Sydney weather has been a bit of a shock with cold and rain...brrrrrr. Today it warmed up a bit and was nice and sunny for a few hours.

Went to Liverpool hospital this morning for a PET scan. Was a bit anxious, still am, regarding the results. I am really hoping for a clear scan. Won't get the report till the radiologists have had a look and written their report. I have had a look at the printed pics but am not experienced enough in reading them to be sure of the results. I have left a message with my referring doctor to send me a copy of the report as soon as he gets it so I am hoping to get something tomorrow. I have an appointment on the 2nd of November but don't want to wait that long. Also I want some time to think about what questions I will want to ask at the appointment and that will depend on the results. Certainly will be looking at a treatment plan of some sort to go ahead with till we go back to Germany in January. Again I have to be the patient patient.

Great being with the dogs again. They are being very cuddly which I am really enjoying. My energy levels are definitely on the improve. Managed to clip Pip, the littlest dog, who was looking like a floor mop that had had an electric shock. She looks much better now. Then I cleaned out the garden shed. Very satisfying. Had to have a little rest on the lounge on the front veranda by the end of that but that was a lot more work than I have been able to do for a long time. Progress on that level regardless of what the PET scan reads.




Thriving and surviving.

Linda

Road Trip to Greer

Those who bring sunshine into the lives of others cannot keep it from themselves

James Barrie


The trip to Greer in the White Mountains was great. It really showcased the wonderful variety of landscape, flora and fauna of Arizona. It is amazing what elevation and rivers will do to change your surroundings dramatically.

We ended up going in two cars as the car we hired wasn't big enough for three dogs and three adults with food, warm clothes and dog beds. So there was plenty of room for all of us and we were pretty comfortable which was just as well as we ended up doing a lot of driving.

We managed to get away pretty close to schedule at 10.30 am on Sunday and headed north east to Payson, Show Low and then onto Greer. As soon as we achieve an elevation of around 3,000ft the Saguaro cacti disappear, they don't seem to like the higher altitude. Junipers then start to appear before the pines take over. We stopped for refreshments at Payson and Mack had managed to throw up into one of Jonathan's shoes. It is good Jonathan has a big shoe size as it pretty well all fitted in there and none on the carpet. Gave us a good laugh.

We arrived at the cabin at Greer and although the cabin itself was very nice it was right next to the road and had no fencing, not good for three large dogs. Fortunately there was another cabin available. It was perfect, very spacious yet cosy, two big bedrooms, large lounge area big enough for 3 adults and 3 big dogs. The 1/2 acre (guesstimate) was fully fenced so the dogs could go in and out at will. We were surrounded by pine trees and a few aspen with their golden autumn colours catching the sun. there were other cabins around but nothing too close. Heavenly. Not long after arrival I saw a lovely Blue Jay, with an orange seed in its mouth, just outside the cabin.

I was feeling pretty good, just getting tired. Paula and Glen went for a walk the first evening and spotted some deer.
Glen and I went for a walk the next morning through the pine trees, they smelled wonderful. We then went for breakfast at Greer Lodge. This is a lovely log building with restaurant views of a delightful little valley with golden aspen on the hillsides between the dark green pines. There is a little river running close by and ponds where people were fly fishing. the waitress was singing along with the country western tunes playing in the background, very cheery. After eating half of my half stack of blueberry pancakes (definitely not on the anti cancer menu but hey it fluffed me up) we went for a drove 5 minutes up the road, spotted some deer on the way and had a little walk along the river. Dogs were ecstatic, the sun was sparkling on the water and the air was fresh and brisk.

We went back to the cabin, packed a lunch and headed off down the dirt roads through lovely forests and grassy meadows till we came to a lake where we thought we would try to fish for trout. It was very windy and quite cold but very beautiful. We had fun with our fishing attempts but didn't catch a thing. I was sort of glad as I didn't want to have to deal with killing the fish. We went fishing in Safeways at Springerville instead and got some beautiful trout there. The drive to Springerville was very scenic and by the time we were heading back to the cabin it was late afternoon and perfect for spotting Elk and deer. We had a look at Big Lake just before we went to Springerville and again on the way back. A stunning shimmering expanse of sparkling blue water surrounded by pale brown grasses and forest covered hills. Paula and I were in the front car and closer to Greer we saw a doe with a fawn which swiftly darted into the trees. the afternoon sun on the grassy meadows and the aspen was gorgeous. Closer to the cabin we saw a big male elk walking along just above the road. They are really large deer, magnificent antlers on the older bucks.

Next day we again packed lunch and headed for Alpine. We ended up having lunch at a beautiful camp spot folded in amongst pine and Aspen covered hills and with a lovely grassy meadow. Again the wind was a bit chilly but the sun was shining, so no complaints. We had camped on that spot in 2001 and had very nice memories of that time as well as making new ones.

We drove mostly along quiet dirt roads, crossing the occasional river and enjoying the beautiful forests. Later in the day we spotted two large horned sheep. It was a ewe with a rather large lamb so their horns were actually not that big but they were very beautiful and surprisingly not that shy. We manage to get a really good look at them for about 15 minutes. Closer to Greer we spotted a whole herd of Elk. One large antlered buck and some small bucks as well as females with young. After a while, and with us trying to get a bit closer, the females and young all darted into the forest but 5 males ran across the grassy plain, first just a short distance and then continued far into the distance. We also got a spectacular sunset to finish off a perfect day.

The last day, after checking out of the cabin, we spent quite a bit of time walking and sitting by a little river that was a fork of the Little Colorado River. Very pretty. I saw an American Dipper which is a little grey bird that actually swims in the running water catching insects. It does not have webbed feet but uses its wings to swim, a delight to watch. We ended up having lunch by the water before heading back home via Show Low and Payson. Just before Payson we has a short stop at another lake the name of which escapes me. It was quite different to the other lakes we had seen in that it had pine trees coming right down to the waters edge instead of the grassy plains.

We got home very tired but happy. Paula and Jonathan did an enormous amount of driving and I spent more than the usual amount of time up and about. I even had sore thigh muscles from walking - excellent. It has not been smooth sailing since. apart from being extremely exhausted over several days after our return I have also had some severe bouts of recurrent gastritis. Combination of lethargy, pain and side effects of pain relief it has been a tough few days. Feeling somewhat better again today. The difficulties reminded me of the saying I put in a previous blog entry "....and this too shall pass". It did and it will again no doubt.

Surviving and thriving.

Linda

Desert Botanic Garden

Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be.

Charles Jones
American Motivational Speaker, Author

My sister, Paula, was taking part in a horse clinic today with a group of other horse enthusiasts wanting to become better riders, and we went to watch. I left the photography to my brother in law, Jonathan, after about 5 minutes of trying to get a nice photo. He is a professional photographer and I was getting too hot in the sun. It was very interesting watching the instructor and then the students try to emulate what he was teaching. Basic rules, be clear in your instructions to the horse, reward when it does it right, be gentle and calm. Not bad rules to live by really. Be clear about what you want, reward yourself when you get it right, be gentle and calm. Patience is a big help as well.


The Thursday before last we went with Dottie to the Desert Botanic Gardens. That was a real treat. Dottie volunteers there every Thursday so she went off to do her thing and we headed for the Monarch butterfly exhibit. Gorgeous butterflies posing all over the enclosure. Got to practice with my new camera. After 15 minutes or so I was exhausted and we decided to go back to the entrance and hire an electric scooter for me to get around on. On the way back we ran into Dottie who was demonstrating birds nests and talking about the deserts of western USA. It was very interesting. Fortunately I was able to sit down while she talked and demonstrated, unfortunately the gastritis was starting to play up. I took some percocet and we went and got the scooter.

The rest of the time at the garden was very pleasant with some opioid relief and hooning around on the electric scooter. A bit of a come down from the 650cc motorbike I used to own but just right for the day. Seriously though the gardens were really lovely. The variety of size, shape, colour and texture of the cacti was amazing. There was also an open butterfly garden, full of flowers and a few butterflies. There were also some historical replicas of American Indian huts and other items.

We had missed an exhibition by an artist who makes glass sculptures which was apparently amazing. There were two of his sculptures at the entrance. I thought at first they were light green plants but they were glass and very striking.

We met Paula for lunch as her work is very close to the gardens. We sat out on a lovely little terrace overlooking some of the gardens. At the table next to us were three dutch women discussing death and dying in some detail. Very interesting lunch time conversation.

Our trip to Greer deserves a separate entry.

Surviving and thriving.

Linda

Saguaro Lake

How different our lives are when we really know what is deeply important to us, and keeping that picture in mind, we manage ourselves each day to be and to do what really matters most.

Stephen Covey

It's been a quiet day today. I am feeling better and better, hooray! Mostly energy issues at the moment. Being very careful about what I eat and drink, don't want to experience another gastritis episode. Yesterday evening we had a lovely time on Saguaro Lake.

We started out just after 5 pm at dusk so not the best time of day to take photos, fabulous time though to be out in nature as the soft evening light is beautiful. Saguaro Lake was formed by the damming of the Salt River and is part of the Tonto National Forest and has a surface area of about 1200 acres (500 hectares), is 10 miles long with 20 miles of shoreline. It's beautiful.

So with Mike and Betsy, who own the boat, Paula, Jonathan, Glen and I set out to enjoy the sights and each others company. The boat is about 31 feet and very comfortable and the engine very quiet which I was pleased about. Betsy provided lovely snacks and dinner, the weather was great and the scenery absolutely stunning. We were also treated to a near full moon and a star studded sky, but i am getting ahead of myself. Joy also in that there was a smoochy dog called Willow on board.

Once we got away from the marina we picked up speed and headed across the open lake with views to distant mountains then through a lovely gorge bathed in late afternoon light. As we entered the gorge Mike slowed the boat and we cruised slowly and quietly along. Glen and I moved up to the bow of the boat to get the best view. There were sheer rocky walls plunging straight into the water, there were huge saguaros perched on impossible ledges, there were a variety of colours of lichen patches on vast expanses of rock. We spotted quite a few caves and there were cutaways in the wall with a sudden profusion of flora.

As we came out of the main gorge it opened out with ready banks and mountain views. There was a lovely contrast with the water and reeds then rocky cactus dotted hills with the mountains behind. Stunning. Little bats started to come out over the water doing their acrobatics catching insects. We came to the end of the navigable lake and stopped the engine and just floated as the night set in as we enjoyed the quiet and peace and day's end. The light then faded very quickly and the stars were soon visible. It is very dark out there so the stars are stunning.

Mike started the engine and we slowly slowly and quietly headed back while we ate dinner and chatted with Betsy. Soon the moon came up over the mountains and reflected beautifully in the water. The rocky sides of the gorge looked great in the soft moonlight on the enjoyably slow trip back to the mooring. What a great experience.

On the way back to the cars Betsy was hanging on to Willow saying that there were lots of skunks in the area. Barely had she uttered these words when a skunk appeared. Fortunately I managed to get the camera out just in time to take a photo before it disappeared behind some rocks. A little further along we saw another one scurry off. Apparently the nasty smell they give off is impossible to remove or cover up, you just have to wait for it to wear off. I thought, how bad can that be? Jonathan then said the smell was like the worst smelling pit toilet you could imagine. Ewww.

This morning Glen went on what was supposed to be a 2 hour walk with a few of the neighbours. Ended up being a 4 hour strenuous hike. Very satisfying but exhausting. looking forward to being able to do that sort of thing again.

Surviving and thriving

Linda