Where to From Here?

'A bodily disease which we look upon as whole and entire in itself, may, after all, be but a symptom of some ailment in the spiritual past.'

- Nathaniel Hawthorn

It has been some time since my last Post, possibly because life seems to have been a succession of appointments and tests. It is now time to contemplate my options, although they may appear to be limited.

This 'little beauty' has grown from less than 3cm to approximately 20cm since the end of January. How much longer will it continue to behave in this way? No one knows!

My 'amazing' oncologist has recommended a course of chemotherapy, although he admits it may have little or no effect. The recommendation is for an infusion of Liposomal Doxorubicin by drip into the vein. This would take place every 28 days.

I have been told that not every one gets all of the potential side effects and yet my concern is always the same. If anyone is going to get them, it will be me. There are two issues that perturb me. One is the possible risk of localised reaction at the sight. Given that I have very little use of my right arm/hand, should the reaction in the left be severe, it leaves me in a bind. The same applies for the possible risk of peripheral neuropathy, including hand and foot syndrome. Given that my skin reaction to previous radiation was severe, I am at also at an increased risk for radiation recall. Do I really need to go through that again?

Is there a suitable treatment for recurring, metastatic breast disease that does not have a list a mile long of potentially life threatening risks and side effects?

At this time, I am contemplating saying 'NO' to chemo and taking a chance on moving away from the farm, and the isolation, to put myself into a position somehow that will allow me to spend time in the company of people and also to be of service.

More on that option later!



The Day Before Yesterday

'The more serious the illness, the more important it is for you to fight back, mobilising all your resources, spiritual, emotional, intellectual, physical'

-Norman Cousins

It seems to me that spiritual, emotional and intellectual health are deeply intertwined, having a profound affect on each other. Although I often feel I would give anything not to be experiencing this dreadful disease with all its side effects, I make every effort to look at it in a more positive light, using it for my own spiritual growth. This allows me to better deal with the chronic pain, as well as the limits placed on me by the diminishing use of my right arm/hand, as well as the clavicular lesion that is beginning to cause more problems. It allows me to find more meaning and purpose to my life and to live more fully in the 'now,' This brings me back to my soul and offers spiritual transformation and self realisation.

For reasons unknown, I have now become more conscious that it has taken me a great deal of pain and suffering to virtually 'force' me to grow spiritually and emotionally. In 'The Alchemy of Illness,' Kat Duff teaches us that the Indigenous communities believe that illness is the most reliable means of revelation and knowledge. We are forever changed by the experience of serious illness, learning things we would never have learned otherwise. Enriched Spiritual Health offers us comfort, meaning, harmony and purpose, hope strength and inner peace. Imagine how much easier life would be if we set out to develop these skills. Spiritual growth is about finding meaning and purpose in our life, discovering who we truly are and connecting with inner strength/peace hope and comfort in troubled times.- from information taken from Cynthia Perkins, M. Ed.

Experiencing life completely and consciously, even in the midst of great pain and suffering, is the essence of true spiritual growth. 'Be still and know that I am God' is the mantra that I use during my most difficult times.

The day before yesterday I woke to find my clavicular lesion weeping haemoserous. Although I was scheduled to have a fine needle biopsy on Monday I cancelled the appointment. I immediately phoned my' amazing' new Medical Oncologist, Dr Andre, explaining that I was fearful of the thought of a needle penetrating the wound. I feel there is no guarantee that it will not be the beginning of an open, ulcerating sore. I understand that my decision may, in effect, make it more difficult for him to choose suitable drugs should chemotherapy turn out to be my only option. I felt the procedure carries too many risks for my liking. He is adorable! He simply said that was' perfectly fine' with him. Although the changes were obvious, with the centre becoming opaque on Sunday, changing to blood filled Monday, I simply was not prepared for the weeping to begin Tuesday. My understanding is that this is the beginning of the ulceration, possible fungation of my tumour.

As we had planned to take my near new notebook computer into Maitland to have the data transferred I called in to see the on duty palliative care nurse regarding dressings. Sally said it was out of her area of expertise and nominated the community nurse who called in to see me today. Although I found her to be delightful, I immediately removed the dressing on her departure as I felt the dressing was not large enough and the tape was attached to an area of radiation damage. I find dressings and tape very irritating. Guess it will be up to Haydn to work it out with me. As usual!



Outcome of Today's Appointment

'I cannot believe that the purpose of life is to be 'happy.' I think the purpose of life is to be useful, to be responsible, to be compassionate. It is, above all, to matter and to count, to stand for something, to have made some difference that you lived at all.'

-Leo C Rosten

Today I saw my 'amazing' oncologist who, once again, has shown himself to be compassionate and caring. CT Scan results show my clavicular lesion having gone from 2.5cm (.098 inches) to 19cm (7.48 inches) in 4 months. Not good!

The recommendation is that I have a Core Biopsy on Monday and then speak to my oncologist. During the consultation Dr Van asked a fellow specialist from the Radiology department if further radiation would be an effective; he felt radiation would be 'fast acting.' She said that it could be done, however, the lesion, which is becoming more like a 'wound' each day would most certainly open up. The probability is that I would be left with an ulcerating hole. Dr Van then phoned my regular Radiation Oncologist (Dr Gupta) to discuss the situation. He pointed out my concerns. Those being that this is a secondary tumour caused by the heavy dose radiation given in June 2009. That being the case, the cancer may not be estrogen positive and the reason the Aromatose Inhibitors have had no effect.  An appointment was made to see Dr Gupta on 31 May with a view to further radiation of the area. Chemotherapy is also being considered.

Our trip home gave me the opportunity for contemplative prayer. Having opened the Request for the Core Biopsy I noted that Dr Van had not specified that it is to be done under Ultrasound. Already with increased pain and inflammation in the area, as well as the hardness of the lesion, which, in my opinion, may make a biopsy difficult and painful I am having second thoughts. Nerve endings are affected and it is possible that a biopsy may cause the lump to weep with no guarantee that it would heal quickly and without further problems. I also believe that radiating the area again is simply asking for trouble and I feel Dr Gupta will show his reluctance at the time of our next consultation. He knows how I feel! I know I am playing 'Devil's Advocate' however, the situation requires drastic action. My next post will discuss further options.

I sensed that Dr Van was referring to the correlation between the radiation and the tumour when he quietly said he is sorry that this is happening to me. I promptly burst into tears!

Where to from here?