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

Progress

Our goals can only be reached through a vehicle of a plan, in which we must fervently believe, and upon which we must vigorously act. There is no other route to success.

Pablo Picasso


Effort and perseverance are paying off it would seem. Yesterday my sister, Yvonne, and I headed off to Liverpool hospital for me to have a PET scan. This was the first one in six months. It is a way to look into the body for metastatic tumours, or any tumours really. For me this is a pretty important check up. The last PET scan was at the end of October 2009. The report by the radiologists here was not clear cut but the second opinion in Germany indicated that I was free of any tumours big enough to see with this scan. That was an amazing result as I had started with 15 tumours in various parts of my body - liver, bones, breasts and lymph nodes. Although my treatment has continued I have not had any chemotherapy since December 2009. There is really no other way for me to know if I was continuing to be free of tumours than to do another PET scan.

Basically it requires fasting for 6 hours before the scan to reduce glucose levels in the body. An injection is then given of radioactively charged glucose. Tumours love glucose so the theory is that they will preferentially take up the radioactive glucose and the scan can then 'see' the flare ups where the tumours are. It requires an hour of lying still immediately after the injection and then about 30minutes in the scanning machine lying perfectly still. Very good opportunity for meditation. The hospital also runs a concurrent CT scan.

After the scan was completed we waited about 3/4 of an hour to get some pictures and a cd of the results and the report of findings would be faxed to the referring doctor later in the afternoon. Being Friday I was anxious to ensure this would happen and my doctor would let me know the result so I would not be waiting till Monday for a result. I had already had two nights of nightmares prior to the test day so I was obviously pretty anxious. I rang the doctor and left a message asking that I be contacted that afternoon. We headed home. I had a look at the pictures that were in the envelope after tearing through the sticker with the message "Please deliver UNOPENED to your referring doctor at your next appointment". I don't think so. Couldn't read the pictures, I am only good at reading X-rays, although I am getting better at CT and PET scans. When I got home I managed to get the cd to work and had a good look at the scans in more detail from tip of my head to almost my toes. Couldn't see anything that looked like tumours either on the PET scan or the CT scan but I could not rely on this due to my lack of expertise in this area. Fortunately Dr Fluhrer rang soon after and told me the report said there was improvement compared to the scan in October and there was no sign of disease. Hoooray!
Although there may be very small tumours that are not big enough to show up on the scan this is really fantastic news. Two clear scans over 6 months! I feel very elated and more optimistic about the future. It would seem that the treatments are working, I am very grateful.

Meantime I have also had some blood sent over to Greece to look at the cancer cells in my blood and see what state they are in. Hopefully there will be improvement there as well. In any case the results of that will determine the treatment plan to come. My doctor in Germany will develop a plan for me to follow based on those results. I am booked to go to Germany in July for treatment but am hoping I may not need to go over there. Not going to get my hopes up too much though as I may need to go over at least for a vaccine (have had three already - they are made up of my tumour tissue harvested when I had my double mastectomy). I should get some results in about 10 days and then receive a plan soon after that.

My current treatment plan is still in place and keeping me busy. Twice a week 5 hour intravenous infusions, 2 intramuscular injections a week, two subcutaneous injections a week, 77 tablets a day, and two concoctions a day. Meditation, Tai Chi, exercise, drawing classes and psychotherapy once a fortnight are also part of the holistic approach. It certainly seems to be all coming together to give a good outcome.

The other part of my plan is to have some fun, socialise and generally enjoy myself. Want to get fit enough to start bush walking again. That is my shorter term goal that I am looking forward to fulfilling and enjoying the process of reaching that.

Sometimes I think I am too goal oriented and I wonder if the caterpillar has a plan to become a chrysalis and then a butterfly or does it just have faith and trust that it will happen? No, it doesn't even do that, it just lives in the moment and it happens anyway. Unless it becomes bird food of course. Ooops. Life is a conundrum.

Surviving and thriving

Linda

Keeping on

Most of our obstacles would melt away if, instead of cowering before them, we should make up our minds to walk boldly through them.

Orison Swett Marden


If you find yourself in a hole, the first thing to do is stop digging.

Will Rogers



Spent a week at Tea Gardens north of Sydney visiting my mother. It was hard not having my father there. I missed him. Despite that we managed to make the most of the beautiful weather. Managed a couple of walks on the beach and swims in the ocean. We also did a short bush walk in a lovely little rain forest in the nearby Myal Lakes National Park. We had several coffees at our favourite cafe, The Boatshed, right on the tranquil Myal River, as we watched pelicans, dolphins, raptors and fish wander by. We did a little day trip to the Hunter Valley Gardens which was also lovely.

Meantime, the lesion on my leg was confirmed to be a malignant melanoma. The good news is that is was relatively superficial and has has been surgically removed. Good riddance! Surgery was last Friday and the discomfort stopped yesterday afternoon. Pain is interesting when it is at a level high enough to make you feel alive and low enough so you don't wish you were dead. It really can make you feel more alive. Not that I would recommend inflicting unnecessary pain as a way to feel alive but as something that can be pondered when pain is present. I have never felt pain enough to make me want to die but I have had it where my entire focus has been on wanting it to stop. OK enough on that.

I stopped taking thalidomide last week and I am starting to feel more energetic. Hooray. Other than that, the treatment routine continues with 77 tabs a day, a few concoctions, and 4 injections a week and two iv infusions of about 5 hours. Just like brushing teeth for a long time (see last blog entry if this doesn't make sense but you are curious).

Focus. That is what I am attempting to change. When I sold my veterinary practice in March 2008 I thought I was burnt out - that is why I sold. As it happened, my exhaustion was probably severely exacerbated by the cancer. In any case, I now feel burnt out from dealing with cancer for nearly two years. It has taken so much concentrated effort and energy, emotionally, mentally and physically, I am drained and exhausted. The treatments have also obviously taken their toll on those states. Fortunately they have also taken a toll on the cancer, which was, after all, the point.

I don't know what the outcome will be, I don't know if I am still clear of tumours. I don't how long I will be here and in what condition. I want to be living the moments that I am here regardless of whether this is as good as it gets or whether it gets worse or better.

I am currently reading 'A Path with Heart' by Jack Kornfield which I am finding helpful. I am also focusing on being 'mindful'. Recently at a meditation seminar with Sabina Rabold, we did an exercise that involved closing our eyes and exploring a small object. The object turned out to be a sultana and we felt it with our touch, we smelt it and tasted it - in detail. In the end it took us 1o minutes to eat the sultana. That was being mindful. Mindfulness has the power to enrich our experience purely through increased awareness. It can be applied to anything we experience with our senses whether it is external or internal. We don't need any gadgets or electronic equipment we just need to apply our senses and we can enrich our lives.

I would like to develop mindfulness as a habit in living. I may not always be wanting to take 10 minutes to eat a sultana but there is a peace in the act of paying attention to what we are doing without judgement. Oh, yes the judgement bit seems to be important. No good or bad, no doing it right or wrong, just focus with gentle curiosity (I think that expression came from Ian Gawler but I can't be sure) on the sensations.

Today I was talking to my therapist/counselor about my impatience and wanting to feel more content and better etc regardless of my circumstances and that I was trying to use the mindfulness practice as a way to 'get there'. The interesting thing is that I was still looking to the future for that elusive 'happiness'. You can never reach the future only the present. So mindfulness now can generate a sense of acceptance for what is and with that, in theory, there would be a sense of contentment. Drawing is a good example for me of this process. When I start a drawing I want it to be a good picture immediately. However, if I am patient and just start drawing without judgement (that is without the critical me, not the me looking at perspective and effects), then I end up getting caught up in the process of creating and I enjoy that. It helps if the outcome is pleasing but whatever it is I still enjoyed the process. That is a good analogy for living, I think, to enjoy the process regardless of the difficulties, the errors and the outcome. Somehow to experience the essence and process of living and with this and acceptance a contentment may also be enjoyed.

Next week I am having my blood test for the lab in Greece, so i should have some results mid May. I am also having a PET scan on the 30th April for which I should get the results in a few days. I am anxious about the results as these are the first tests in 6 months and I am wondering what effect the difficult January treatment may have had.

My therapist has lent me a book called "Here for Now" by Elana Rosenbaum. In the introduction it says " Here for Now is about living well and facing life's challenges with strength, and grace, an open heart, a clear mind and a steadiness of purpose." Sounds like inspiration to me.

So continuing with purpose to survive and thrive.

Linda

Another stage

When it is dark enough, you can see the stars.

Persian Proverb

A whole month has passed by already since my last post. I spent some time with my sisters at our mothers house and then my mother came and stayed with me in Sydney for a little while. Paula went back to the US and as usual I miss her although we do keep in regular contact. Mum has gone back to Tea Gardens and seems to be managing ok on her own. She is very strong and determined and despite the loss of her husband of 61 years is coping well. We will visit her again next week and hopefully do a few day trips. We scattered dad's ashes on Pittwater on a gorgeous sunny day.

My mood has been up and down quite a bit. I had hoped for an easier year this year but so far that has not happened. The treatment in January in Germany was very difficult, then hospitalised for a week in Sydney, then my father getting sick and his loss is very sad.

My energy levels are still not very good. I have been trying to get into a routine of treatments and exercise but the events have stalled it a few times. Frustration and impatience are part of my problem. Seeing I was clear of tumours at the scan 6 months ago I feel I should now be feeling much better than I am.


Although I intellectually I feel I should be grateful for still being "above ground" and responding well to treatment in terms of the tumours, emotionally I have been feeling despondent. My focus for the past 18 months has been research, tests and treatments. Pretty well a full time job and requiring a lot of focus. Now I feel I need to change my focus to other things while I continue with treatment and tests. Someone said I should view the treatments like brushing my teeth, something you do daily as necessary but not something I dwell on. It is a bit harder than the simplicity of teeth brushing with the treatments especially the intravenous ones twice weekly which run for about 5 hours and usually cause some malaise while they are running. Then I need to do stock control for medications, syringes, needles, fluids etc and ensure everything is ordered on time. There is also the slight changes and variations in the treatment day to day that I need to be kept abreast of (no pun intended). Never the less I feel that it is important for me to not focus so much on my cancer situation. I don't know how long I have got, whether I will ever feel really healthy again or how long my treatments may last and at what level. I just can't wait for it all to "get better" when this may be as good as it gets.

We have been to the Blue Mountains for a day to visit Glen's parents and enjoy the beauty of the mountains, one of my favourite places. It was a lovely sunny day and I managed a much longer walk than I thought I would down to Gordon Falls with a lovely view over the valley and towards Mount Solitary.

The drawing classes I started earlier in the year were good although I missed several sessions. The meditation seminars have also been good as well as the Tai Chi classes, some of which I also missed. Going to the gym to try and get some muscle and stamina back has fallen by the wayside. The last two days I have walked the dogs around the park and managed to get all the way around without needing too much of a rest along the way. That will help a lot if I can keep that up. I am certainly up and about during the day a lot more than previously with only a rest in the afternoon.

Somehow I need to find the joy again in my day to day activities, to feel enthusiastic despite my lethargy and to try and build up my stamina and strength if possible. Patience is needed I think not just with progress but with myself for the condition I am in and the limitations that produces in what I can do. I need to focus on what I can do rather on what I can't do. I need to overcome my fear of life slipping by and maybe not being able to do the things I had envisaged to be doing now or later. I am alive here and now and can enjoy it just by breathing.

Most of the time since I was diagnosed in 2008 I have been pretty upbeat, it is interesting that now that I am 'clear' of tumours I am feeling more despondent. There is a certain level of disappointment of where I am in terms of energy levels. On the one hand I have made fantastic progress and yet there are still serious problems. Perhaps too I am nervous about my scan and blood tests due at the end of this month. It has been six months since the last tests and I have no other way of knowing how it is all going. I am also waiting on biopsy results for a likely melanoma that was removed from my right leg. I should get results this week and am seeing the melanoma specialist again on the 16th. Disappointing to get that when I am having so much treatment for cancer. Hopefully the treatment has stopped it progressing past anything more than superficial.

On the up side I have enrolled in another term of drawing classes and I will be going back to Tai Chi classes when they restart in a few weeks. Hopefully I wont have to go back to Germany in July for further treatment. I have run out of insurance money and have started using my retirement fund for medical expenses. It is not only the financial issue but the treatment in January was so difficult I don't relish more of that, it would be nicer to go on a holiday somewhere instead. However I will do whatever is necessary to overcome the cancer as I am certainly not ready to give up on a longer life.

Well I always seem to bounce back from physical hardships of this journey and I am sure I will do likewise for the emotional downturn I am experiencing at the moment. One thing that is guaranteed, this too will change.

Survive and thrive

Linda

Dad

"When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight."
--- Kahlil Gibran


My dad died last week after a short illness. Despite his 87 years it was unexpected. He developed a very aggressive bone marrow cancer and was sick for only just over a week. Glen and I had come up the weekend before and visited him in hospital along with my sister Yvonne, my niece Alison and my mother. He was breathless but otherwise pretty good. There were lots of tears as it was becoming obvious that he was not going to recover and he was deteriorating very quickly. Dad was lucid and talkative. Normally he is pretty quiet. He had a wonderfully dry sense of humour and he was still being funny. Monday Paula arrived from the US and after picking her up from the airport we headed back up to the hospital in Newcastle and visited dad. He was very talkative, mostly worried about leaving mum on her own as he was aware at this point that he was dying. Tuesday morning Paula, mum and I went and saw him again. He was still coherent but had a lot of back and neck pain. After discussion with the doctor we decided that morphine was necessary and removal of feeding tube and iv drip to make him as comfortable as possible and not unecessarily prolong his time in hospital. We stayed most of the day but once the morphine took effect he slept a lot, just waking up briefly every now and then. Wednesday morning we went back to the hospital and he was not really waking up much at all. Yvonne arrived late morning. Paula and I talked about her arrival later and the great sense of relief we felt when she walked in, as though there was some sort of completion to our little group. We were all standing around his bed when his breathing became more shallow. He was lying slightly on his side and he opened his eyes and looked at Yvonne, Paula and mum in turn and then quietly passed away. It felt very sad but also peaceful. Even though he was not able to see me on the other side of the bed I had a very strong feeling he knew I was there.
He had a good life and lived much longer than any of us expected, including him. It is hard being at my parents home and not seeing him in his usual spots. There has been a lot of crying and a lot of happy remembering. He was a sweet gentle man and when he smiled his whole face would light up. He spent a lot of time on the water. When he was 16 he went to sea. Then the war broke out and he ended up in the merchant marines in convoys for the length of the war. He loved sailing on Pittwater and had a sailing boat big enough to sleep on and mum and dad would go out all week, come back for the weekend and go out again. We will scatter his ashes on Pittwater and remember the joy he got from sailing there.

There is sadness in his loss and joy in remembering his presence.

Linda

Happiness, in order to last, will always be an inside job, a constant quest involving reflection, action and further reflection--an active, daily pursuit frought with peril, distractions and the even greater danger to it, malaise, that lazy, bit by bit forgetfulness that day by day lets go of the dream--until we wake up old and wonder why and what it all meant...

The only certainty is that life goes on, with or without us, with or without our contribution, with or without our happiness--and, therefore, only each of us can determine our own happiness fate, and only if we consciously make the ongoing decision to go after it.

What does it look like?
What does it feel like?
What does it taste like?
How do we find it?
How do we keep it once we do?

Look around...maybe, just maybe, it's already there...



The unexpected continues to turn up. I guess that is what life does. Better than the total uneventfulness of death I guess. In any case the thriving I intended at the last post didn't go quite as planned. I managed to get septicaemia (bacteria in the blood stream) and ended up having to call an ambulance and spent a week in hospital on intravenous antibiotics. Then a week at home recovering from that. Now I am back on track and going to the gym three times a week, Tai Chi classes once a week and intending to increase my swimming as the solar heating is finished and working for the pool. I am currently on my first intravenous treatment since before I went to hospital. I would have started earlier this week but the fluid bags were out of date so I didn't want to risk repeating the hospital episode so waited for a new order of fluids to come in.

The drawing course I enrolled for has also started. Didn't enjoy the first week so much but this week was better and I actually improved which was gratifying. Also enjoyed the actual process and the 2 hour class went by very quickly. I even feel inspired to do some drawing at home. The Tai Chi class was also good this week and I hardly had to sit down during the class and I stayed an extra 15 minutes for the practice of going right through the stages 1-6 at the end of the class. Most enjoyable.

My stamina and strength at the gym are also improving. I have lost a lot of muscle in the last 18 months with all the lying around. I went and saw Dr Fluhrer a couple of weeks ago and he tested my body fat percentage which is a horrific 30%. This means that I am carrying about 6 kg of fat (yikes) and without the fat I weigh about 52 kg. This is underweight for my height and reflects the low muscle mass. So I really need to build the muscle and get some strength back. This should help with my lethargy as well, more muscle will give me more energy. It is also much nicer to exercise without large breasts getting in the way and not having to wear an uncomfortable bra. The advantages of a double mastectomy despite still getting some discomfort from the surgery where the fascia was removed from the muscle on the right side. Glad that no actual muscle was removed.

Emotionally this last week has been interesting. I have been crying a lot on some days for no apparent reason. I will be driving along and thinking about the lovely trees along the side of the road and suddenly I will be in tears. I haven't cried very much since I was diagnosed. I may be feeling a combination of grief at nearly dying, and I am not out of the woods yet, and joy at surviving. Perhaps being home, getting into a routine of treatment that doesn't make me very sick and that requires less courage, is allowing me to let go a bit more. Less pushing hard to keep going and more relaxing into a life that is not completely focused on cancer and its treatment. Maybe the letting go is allowing the tears to come that I have held onto all this time. In any case I am not worried about it, just intrigued. I have also had moments of feeling physically almost normal - wow!

Intellectually I am struggling a bit still. My memory is shot to pieces. Lots of past stuff I don't remember at all, short term memory is also not good and I will forget things that I did and said an hour ago. Presumably this is all due to the drugs I have had over the last year. Hopefully this will improve again with time. My hair is growing back so maybe my memory will also be restored. I haven't forgotten everything in my past, it is just like a jigsaw puzzle with some of the pieces missing. As I am trying to live more in the present anyway it is not a great loss, just can get a bit tricky if I have promised to do something for someone and then I forget.

The garden needs some attention and I have managed to do a bit of pruning. The bromiliads are flowering and look stunning. The heavy and incessant rain let up this week and it has been nice to have some sunshine as well as heat. Life is good.

Surviving and thriving

Linda