Troughs and Valleys

Life is about falling.   

Living is about getting back up.  

It's been a tough few weeks.  Firstly the surgery on my port was not successful so had to go back in to have a new port put in on the other side and have the old one removed.  What was to be a simple procedure became a bit more complicated.  The tube from the new port was inserted into the external jugular vein and then was to be pushed down to close to the heart.  Unfortunately there was a stricture in the vein and the doctor had a lot of trouble threading the tube through - turned into a much longer and somewhat brutal procedure.  The old port on the right side had a lot of scar tissue around it with adhesions so it too was not a quick simple procedure to get it out but took quite a bit of digging.  I also had a bad head cold at the time so felt pretty miserable.

Recovery over the next days seemed to go ok.  My neck was very sore and it was painful to swallow but otherwise no problems.  Then I started to get some pain on the left side of my chest.  Just intermittent and not too bad.  By Tuesday night however it was very painful and continuous and difficult to take a breath.  As it was getting worse started to worry that it may be a blood clot from the port surgery causing problems or a new tumour in a rib.  Spent the next 36 hours in a morphine haze in hospital and had x-rays and a CT scan.  Nothing showed up which I guess was a good thing.  No sign of tumours and no blood clots in the lungs.   A small change in the bone density of my sternum showed up but was non diagnostic.  I have had a tumour in the sternum higher up so this could be the start or a new one and could be causing referred pain to the ribs.  The lesion does not look like a tumour, so I am optimistic.  I am due for a PET scan soon anyway so that should clear up whether it is or not.  By Friday I was a lot better even without morphine and I went home.  Pain has been slowly getting better until this morning when it is worse again.  Back on pain relief and wait and see regime.

Had a lovely time in the garden a couple of days ago.  the weather was fabulous, sunny and warm and I replaced a few little plants where a few had died in the front garden.  There are some beautiful flowers in the garden at the moment and I spent quite a bit of the afternoon sitting in the garden just enjoying it.  It has been raining ever since but it looks like the weather is clearing again and the sun is coming out.  So like the weather my health keeps changing.  It goes into troughs and it may be a bit of a climb out, but I do seem to come out on top again each time.

Went to the doctor again yesterday mainly to discuss the continuing lethargy and some chest discomfort, unrelated to the pain in the rib area.  So I have a referral to a cardiologist and also need to have some more blood tests just to check things like thyroid function.  It is probably just a side effect of the Thalidomide and Arimidex both of which cause lethargy along with their other side effects.  I just want to make sure that there are no other issues to deal with.  My body has been through some tough stuff and there is a family history of heart disease.

It is going to be a busy few months ahead with doctors appointments, tests and scans and some really nice stuff like a a few days down the south coast with a lovely friend,  a week in New Zealand and then my sister and brother in law coming over for a visit and we are all going up to Cairns for 5 days.  As well as that Spring is in the air!!  Looking forward to some warmth and sunshine and watching the garden grow.  Hopefully I will be well enough again soon to walk the dogs in the bush as the flowers at this time of the year are pretty spectacular.

Hopefully on the upward bounce again and in any case surviving and thriving.

Linda

Magnetism

Let us always meet each other

with a smile,

for the smile

is the beginning of love.

~Mother Teresa




Must have got a taste for outings after going to Noosa.  We decided we wanted a long weekend  away and were going to go on a road trip to Lightening  Ridge which is in the north of  NSW.  The plan was to leave Friday morning and come back Monday.  Then Glen was watching the weather report on Thursday evening and noticed that it was 28C in Townsville.  We weren't enjoying the unusually cold winter (for Sydney) and decided to go there instead. So booked flights and accommodation for Magnetic Island, which lies just off the coast of Townsville in Queensland, late on Thursday and flew out Friday morning.  Great spontaneous choice!  We had a fabulous warm and sunny weekend.  Glen has a cousin living on Magnetic Island so we caught up with him and his partner.  Coincidentally I have a cousin living in Townsville who I had seen about once in the last 45 years and that was about 20 years ago, so we caught up with her on the Monday as well.  So it was all good.

Magnetic Island is situated in North Queensland's renowned Great Barrier Reef region about 8 km out from Townsville, a pleasant ferry ride.  The majority of the island is national park and there are about 2000 inhabitants.  It features spectacular natural landscapes and seascapes including granite boulder-strewn headlands, hoop pines, sandy beaches and fringing coral reefs.  One of the highlights was walking to Balding Bay which can only be reached on foot or by boat.  The walk was pretty strenuous but definitely worth the effort, the small bay was stunning and the water warm enough even for me to have a swim.  The apartment we rented was right on the water and we saw several turtles surfacing.  On one walk up to some old world war II relics and stunning views we saw 4 koalas, delightful.  The rent of the apartment included the use of a little convertible Golf car so we zoomed around in that.  What a fabulous weekend.


We arrived home on the Monday and I had missed an infusion on the Friday, so back to it on Tuesday.  I was feeling particularly woossie and put the needle into the port through a little crater in the skin that was basically scar tissue from the long term needle placement in Germany.  I don't usually use that point but it has the advantage of not having any sensation left.  Unfortunately I had a bad reaction as I think the skin at the bottom of the little crater had gone and left the port exposed to the open air and the disinfectant.  Not sure if it got infected or just inflamed but it was very unpleasant.  I started on some antibiotics but by Friday decided I needed to get it fixed.  So this morning I was back in St Vincents Hospital, where I had the port put in last year, for some surgical repairs.  The doctor really wanted to replace the port and put a new one in in a different spot but I convinced him to try and just repair the skin by excising the little crater.  Hopefully it will all work out.  In any case I am home now and have taken some pain relief medication as the local anaesthetic has worn off.  At least I will have another little break from infusions this week and I plan to go visit my mother at Tea Gardens.
 
Had my regular blood tests and all is fine, kidneys & liver functioning well, blood counts all good and Tumour Marker reasonably low at 29 (started at 80).  Still need to get my mercury levels rechecked.  Then in September/October another scan and more blood tests for Greece.

Looking forward to Spring's warmer weather and longer days.

Surviving and thriving.
Linda

Queensland Holiday

Experiences
slipping through our being
like particles of beach
cascading between our fingers
or gathered together
into castles
dreams becoming reality
ever-changing
structures
of creativity

~ Linda de Haen




It's been a couple of days already since we got back from a lovely 10 day holiday in Queensland. It was great. Warmer and it was lovely to have a holiday that was unrelated to cancer and where I had a break from my twice weekly 5 hour infusions. The other bonus was that my energy levels were really good so I got to do things that I would not have been able to manage in the last couple of years. All in all it was a great way to celebrate surviving at the 2 year anniversary of my diagnosis of stage 4 breast cancer.

We flew to Brisbane, hired a car and drove to Bribie Island about an hour or so north of Brisbane. The apartment was onthe 5th floor right on the beach and we saw dolphins passing by every day we were there. Lots of cargo ships went by as well. Two of the days we were there we went to the Abbey Medieval Festival which was about 15 minutes away. It was fabulous, much better than I had thought. The medieval period spans quite a long time and there were groups from different times within that period. Lots of people dressed up, not just participants but also lots of the visitiors. We managed a cape each and a gold head band. My favourite event was the jousting. The horses were amazing and the jousters were in full armour. Very skillful event. They had jousting poles with wooden ends which they had to strike, at full gallop, onto a small shield attached to the opponent between the shoulder and hip. If the pole broke they would get 1 point and if it shattered 2 points. They had men vs women and individual points. The women won by a rather large margin. There were jousters from France and New Zealand as well as Australia. The festival was very entertaining and lots of fun.

We then headed up to Noosa to spend 5 days with some friends who have an apartment at Noosaville. On the way up we stopped to climb up one of the Glass House Mountains. It was only a 700meter climb on a very good track but it was very steep so I was extremely pleased that I was able to do it, with lots of little rests. The view from the top was excellent. We then visited Australia Zoo of Steve Irwin fame. It is not a very large zoo and we were able to see pretty well all the exhibits and have lunch in about 4 hours. There were tigers and elephants as well as the native Australian koalas, wombats, kangaroos, echidnas and of course crocodiles. The bird show was impressive with free flying groups of parrots, very spectacular and amazing that they all returned back to their handlers when they could have just flown off.

While at Noosa we did a day trip to Fraser Island which is the largest sand island in the world. We were very lucky with the tides so that we were able to go along the beaches to get to the island ferry rather than along the road and we saw some whales on their migration north. The Island is very beautiful with several lakes and rainforested areas as well as beautiful beaches. The freshwater lakes and creeks had crystal clear water and despite the heavy tourism looked pristine. Goannas were hanging around at lunch time and just when we had given up seeing any dingoes we saw some just before getting back on the ferry to leave the Island. We did a short bush walk along a creek in the rainforest - gorgeous.

Now home again and back on the straight and narrow as far as food is concerned. I have had an infusion and am doing yoga again in the mornings. I am feeling optimistic with my energy levels being so good and hope to get fitter and stronger over the next few months. Need to stop the weight gain now in spite of it being a side effect of the drugs.

Now off to walk the dogs in the bush. The sun is shining despite a forecast of rain and all is well.

Surviving and thriving

Linda

2nd Anniversary

Fall down seven times
Stand up eight
~ Japanese proverb

When the Japanese mend broken objects, they agrandize the damage by filling the cracks with gold. They believe that when something's suffered damage
and has a history it becomes more beautiful.
~ Barbara Bloom


This week is the 2nd anniversary of my diagnosis of stage 4 breast cancer and I have also reached what I like to call my 'use by date'. One of the oncologists I saw very early on gave me two years to live if I had treatment. Nice to prove him wrong. I actually feel healthier now than I did 2 years ago before I started treatment.

Although the treatment has been very tough at times it has certainly been successful so far and I am feeling physically better all the time. This time two years ago I would get out of breath just going to the letter box at the end of our very short driveway. Now I can walk several kilometers without any problems. I am still not very fit and need to build on my strength and stamina but that is all improving as I walk most days with the dogs and have just purchased an exercise bike. I am also doing yoga every morning which is great for having a good stretch and is helping with strength and joint pain. There are other things I am now starting to do again, a bit of gardening and some small home maintenance projects. My office is starting to look a lot less cluttered as I slowly work my way through the accumulations.

Tomorrow we leave on a 10 day holiday to Queensland. We are flying to Brisbane, hiring a car and staying four days on Bribie Island, right on the beach. Then we will drive further up the coast to Noosa and spend the rest of the time with friends there. This will be the first holiday for two years that is not cancer related. Fabulous!! I will miss a few infusions but I will be able to take other injections and tablets with me so I won't miss too much in that department.

The side effects of the current treatment regime are ongoing but bearable. Talking to a friend who has menopause and some other aging symptoms we concluded that it is better to have these problems and be aging than to be dead. Now when I hear someone complain about the vagaries of old age I realise how great it is to experience old age, to not die, to live on and experience more of life, even if there are some discomforts.

At the moment my thalidomide dosage is 100mg every second day. This is my thalidomide supply from Germany. It is much cheaper over there but they do not have 50mg tablets. The advantage of thalidomide is that it stops tumours growing by inhibiting the growth of new blood vessels. Tumours need a blood supply to grow. The other advantage is that I sleep well when I take it. I am also on arimidex which blocks estrogen. My particular breast cancer is sensitive to and 'likes' estrogen. This means that I want as little estrogen in my body as possible so the cancer is not stimulated to grow. The side effects of this drug are like severe menopause and not very pleasant - insomnia, joint pain, weight gain, hot flushes, osteoporosis. I have had menopausal symptoms for about twelve years and as they were severe I did go onto HRT. This probably contributed to my getting cancer. Now I can look forward to quite a few more years on arimidex and 'menopause'. Hopefully it really will help give me quite a few more years. The insomnia is nicely counteracted by the thalidomide on the days I take it. The other nights I get about 4 hours sleep. If I get really desperate I take a sleeping tablet but I try not to take them as I figure my body has enough to do in terms of detoxifying. I have gained about 8 kg since January as both arimidex and thalidomide cause weight gain. Still you do have to put food in your stomach to gain weight. I am hoping that as I get fitter and stronger I will be able to burn more calories. The yoga is helping with some of the joint pain and the hot flushes are quite handy on a cold day. Tai Chi is probably helping with the joint pain as well. To counteract the osteoporosis I take a calcium and magnesium supplement and once a month I include Zometa in my infusions to help strengthen my bones. Exercise is also helpful for keeping my bones strong.

My insomnia is partly due to drugs and partly due to anxiety. I have discussed this in therapy. It most likely has to do with the perception of loss of control over my life. The realisation at a very deep level the reality that there are many things in life that we can not control. I have been quite adventurous and looking for change and improvements during my life for as long as I can remember. On the flip side I also like to be in control and I am very goal oriented.

When I was about 5 or 6 I remember cycling the long way to school and often getting there late because I would get distracted by the country side and whatever was happening and have a bit of an adventure. When I was in my early twenties I travelled around Europe for a couple of years, mostly hitch hiking. It was very liberating and I certainly let go of a lot of control then. Sometimes I would head off in the morning and the biggest decisions I would make all day would be whether to have tea or coffee and which side of the road I would stand on to hitch a ride. There was another time I was travelling by train and was leaving Austria to go to Switzerland. It was November, just before my birthday. I was standing on the platform when I noticed a sign on the next platform saying 'Venice'. That would be nice. So I switched platforms and went to Venice for my birthday.

The veterinary clinic I eventually bought and owned for 18 years was a leap of faith to start with and then an ongoing journey of goal achievements and change. I liked to constantly change and improve. This could be unsettling for the staff as well as myself at times but gave me great satisfaction. There was a certain level of control and any changes were always well planned. Certainly I had lots of anxiety and stress in those years as I waited to see the outcome of my plans and changes.

When I was about 7 we moved from Holland to Australia, then when I was 9 we moved back to Holland and when I was 11 we moved back to Australia. These were massive changes in my life that I had no control over. Some of the adjustments I found very difficult - learning a new language and some of the cultural differences especially those relating to school. Ending of long term relationships were the other major traumatic events in my life where I felt I had no control. My first three and only other long term relationships were all ended by the other person and I was shocked and devastated.

These major events in my life, over which I had no control, did teach me to be very resourceful in finding ways to cope and to move on and continue to enjoy life. I think this 'history' and how I handled these events has helped me cope with the challenges that getting cancer has brought me. It has helped me to be very structured, to plan, to push through what seems like insurmountable obstacles and to not give up. Where there is loss of control over events I have taken as much control as I could and run with it. I learned to reach out for and find help.

In spite of this I do believe I have been deeply effected by the unexpected and life threatening diagnosis and developed some anxiety about the lack of control I really have over some very major aspects of my life. My take on that is that this is perfectly normal. My belief is that I can work on this and reduce the level of anxiety over the unknown and things I have no control over. Ultimately everyone is in the same position. No-one, or very few, people know when they are going to die or even when a major catastrophe may happen in their life. We all have this in common. Getting cancer, and probably many major illnesses, just makes us more aware of our vulnerability and fragility. It makes it more real and therefore scary. The fear for me isn't about death as I see that as just like going to sleep. It is about wanting to live more, for longer and with good quality. I am not ready to give up on life.

So my motto to survive and thrive continues.

Linda

Use by Date

If we wait for the perfect answer
the world will pass us by.
~Jack Welch



If we continually fill our minds
with thoughts of faith, hope and gratitude,
it will eventually crowd out our fears
~Dr. Norman Vincent Peale





It was in June 2008 that I first became really sick. It was some kind of flu that had me bedridden for a few weeks and then I didn't really recover. It was around this time that I noticed the growing lump in my breast. By the 12th July I had been diagnosed with stage 4 breast cancer and a had been given a tentative prognosis of 2 years with treatment. So my 'use by date' has just about arrived.

It is not only the significance of this anniversary of my diagnosis and the fact that I am not actually dead or dying that has got me doing a fair bit of contemplation. There has also been a shift in my activities associated with my cancer treatment and research. I seem to have settled into a routine of treatment, stock control and ordering and am not doing much research. The last two years have been very goal oriented, very focused and extremely intense. There is a bit more relaxation now. I feel like I am catching my breath a bit. There needs to be a bit of refocusing away from constantly looking to the next scan/test result and its follow on plans. I am assuming that I will live well beyond my 'use by date' and I feel I can't live my life waiting for the next scan/test to see what to do next. I want to get on with living my life and making some plans not related to cancer.

This is turning out to be more difficult than I thought it would be. There are days when I think, intellectually, that I should be jumping for joy and grabbing life by the proverbials because so far I am beating the odds and doing incredibly well considering the diagnosis. The reality is that I often feel a bit lost and emotionally low and still a bit overwhelmed. It seems a contradiction with the times when I feel a distinct increase in richness of my life and a greater calm. I feel like the goals I have had for the last two years have largely been achieved. I am a very goal oriented person and perhaps this loss has made me a bit unsure. Short term goals are not a problem, such as de-cluttering my study. It is longer term goals I am struggling with. Not sure if I still don't quite believe in my survival and so can't imagine being hale and hearty and ready for 'plans' going past the next 6 months. Having said that I have booked some holidays for July and December/January. Anything else seems beyond me at the moment.

The dicision I have been able to make is that I won't fret about my dilemas too much at this stage. I think I probably just need to catch my breath, so to speak.

Very little crying occurred really over the past 2 years considering the level of the illness and potential imminent death I have experienced. It was interesting therefore this morning when I put on a piece of music that I hadn't listened to in quite a while. I was very fond of playing it when I was very sick, probably from about April 2009 to the end of the year. I burst into tears. It took me immediately back to lying around listening to this beautiful music and feeling incredibly unwell. It brought out a really strong feeling of compassion for myself and those close to me who were also affected. This did not feel like pity or self pity but just a sorrow for the suffering during this difficult time.

My physical wellbeing is improving again and I have managed to walk the dogs in the bush again, much to our mutual delight. The weather has turned again now however and the days I have my infusion are also usually no go days partly due to the duration of the infusions but also because I don't feel that great immediately after pumping the goodies into me. Further short term plans have also included booking a trip to Queensland in July. We will fly to Brisbane and then rent a car and drive up to Bribie Island for 4 days. There is, coincidentally, a medieval festival on the weekend we are there so that should be a bit of fun. Then on to Noosa. We have been invited to stay at a friend's apartment for a week. That should also be enjoyable and hopefully we will include a day trip to Fraser Island which sounds gorgeous and I have never been there.

Short term plans for fun are in place, longer term more meaty stuff can wait for a while.

Survive & thrive

Linda

The Impatient Patient

Inch by inch, life's a cinch.
Yard by yard life is hard.
~Unknown

Courage is the door
that can only be opened
from the inside
~Terry Neil



Test results finally did come in. Not much change, unfortunately. The little buggers (cancer cells) are still quite aggressive and wanting to grow into tumours. At least there are not as many of them trying to do it. So, back on Thalidomide and continue with twice weekly infusions of vitamin C, chelation and glutathion. As well, the Artesiane (anti malaria drug) is still showing up as effective so that goes into muscle twice a week. Then I will continue immune booster injections twice a week as well as the 77 tablets daily.

I had a bad reaction to my infusion last Tuesday. That was a lesson for being a patient patient. I tried to increase the speed of the infusion so as to give me some time off in the afternoon. Not a good idea. The result was three hours of severe shivering and shaking and not being able to get warm, despite going to bed fully clothed with two heated wheat bags, electric blanket on high and the air conditioning turned up to 28 degrees C. Terrible headache and feeling generally horrible. It is more than a week later and I am only just starting to feel better. On Friday I felt too sick to do my second infusion for the week and instead waited till this Tuesday. If I have had a reaction I always feel some trepidation at the next infusion. I did it nice and slow so it all went well, just the usual slightly off colour feeling in the afternoon.

The good news is I don't have to go to Germany in July. Yipeee!!! Instead we are thinking of having a little holiday somewhere warm and healthy preferably with some snorkeling and/or beautiful natural surroundings.

Last weekend we did go to the Blue Mountains just west of Sydney. The weather was stunning and I managed a lovely bush walk along the escarpment opposite Mount Solitary and the Three Sisters. Stunning views, lots of birds, a few hills and the gorgeous Australian bush. There were some beautiful autumn colours as well. Hopefully I will keep building on this and look forward to many more bush walks, one of my most favourite past times. Been too sick this last week to walk the dogs in the bush and now the weather has turned rather nasty. Like everything else, that too will change.

Surviving and thriving
Linda

Blood Tests and Patience

A bird does not sing because it has an answer. It sings because it has a song.


My lesson at the moment seems to be letting go of control. A constant lesson really, if you have cancer. I was supposed to get my blood results a few days ago but when they arrived it was only really one small part. The correct tests had not been requested by the doctor so I have to wait another week while the tests I need are processed. The result I did get was very good. It is a count of the number of cancer cells in a small sample of blood. So not highly accurate overall but a good way to keep an eye on trends. My last test in October showed 6.6 cells per 7.5 mls of blood. This has halved to 3.3 cells per 7.5 mls. I try not to think about how many cells that means that there are floating around my body but focus on the fact there are half the number that were there 6 months ago.
The rest of the results look at the genetics of the cancer cells such as their propensity to spread and grow new tumours and so on as well as testing them against a variety of chemical, natural and immunological agents to see what has changed and allow a revision of the treatment plan. Still don't know if I have to go back to Germany in July for treatment or not. So now the waiting and being patient and letting go. Hmmmm. Maybe that should be Ommmmmm.

My meditation has been pretty regular lately and this is helping me find some equanimity. This last week I have been focusing on building 'loving-kindness' and being mindful. The mindfulness in particular is helpful in reducing stress and anxiety as it focuses on the present rather than past or future scenarios. If I am being mindful of what I am doing, feeling, hearing, touching right now it is impossible to think of what might happen. It is a very enjoyable way to be but I think it takes quite a bit of practice to be able to maintain the focus. I am so used to my brain going at great speed through all sorts of future scenarios as well as past happenings. Neither of which I can do much about. There is a certain amount of planning I can do and arranging but in reality that takes up a small amount of time compared to what I tend to give it. There needs to be a certain amount of faith that things will turn out ok or that if they don't I will manage whatever happens. Shit happens, it is inevitable. I would like to be able to use that manure to grow flowers so to speak. Joy also happens and I would like to fully appreciate it when it is there. I think a lot of suffering is self inflicted by attitude, much of which is just habit. That might be making light of it a bit. Habits can be very ingrained and hard to shift. First I need to develop awareness as to what I am doing around bad habits of thought and action and then change those for the better. Easier said than done but it is good to start and meditation and mindfulness seems to be a way to go down that particular road.

Have been managing some short bush walks with the dogs - wonderful. The weather has been great, a bit cool but wonderful sunshine. See a lot more birds in the bush than in the park or our garden and it is nice to walk on dirt tracks, feel the breeze on my skin and smell the fresh air.

We are heading off to the Blue Mountains this weekend so hopefully will manage a bit of a bush walk up there. Weather forecast is good. Can't take the dogs, unfortunately.

Surviving and thriving

Linda