IRE-Nanoknife

‘To love is to risk not being loved in return. To hope is to risk pain. To try is to risk failure, but risk must be taken because the greatest hazard in life is to risk nothing’ – Author Unknown

I have just come from reading a Post by Nolly Posh (aka Vicki @ http://nollyposh.blogspot.com/2011/07/nanoknife.html on the subject of IRE Nanoknife. Thank you Vicki; this has given me new hope.  Apparently, this treatment, which can be performed on soft tissue cancers, is being utilised at the Alfred Hospital in Melbourne.

That in itself brings back memories. In March 1990 my late husband Raymond was admitted to the Alfred where he was diagnosed with a brain tumour. After more than 7 hours in surgery, his neurologist came out and broke the news. His words! 'This is very serious!' It was! At 48 years of age Ray was paralysed completely down the left side. At that time, we owned and operated, the Lakes Entrance Squash and Fitness Centre. Eldest son Damian was left in charge of the Centre, with help from a special friend Marianne Hocking. Jeremy, who was only 8, was 'off loaded' to an amazing family. The Allen family looked after him as one of their own. It is times like that you feel truly blessed to have such amazing friends.

Unfortunately, at that time it was determined that Ray also had a tumour on the lung. It was necessary for him to undergo intensive rehabilitation before he became a candidate to surgically remove the lesion on the lung. We were transported daily, by ambulance, from the Alfred to the Peter MacCallum Cancer Centre for Ray to undergo radiotherapy. The facilities were 'amazing' (there we go again with THAT word) in that they provided accommodation at all times which enabled me to be with Raymond 24/7. We were truly blessed to have a Cardio Thoracic Registrar on the ward that advised me to take Raymond home two weeks post op. Fortunately, he recognised that Ray was at risk of depression which could possibly have kept him there for an extended period of time. I remember the fear I felt as we left the hospital. Ray was only just out of the wheelchair. I need not have worried. As we drove through the Latrobe Valley, heading for Lakes Entrance, we stopped for coffee. From that moment Ray's condition improved. We were going home, after 18 weeks. The family would be waiting; we would be together again.

This post did not quite go in the direction in which I intended, however, it does give you a little more insight into my 'decision making' process. Either Ray or I have been on the 'cancer' journey since 1978. He lost his battle in 1994. I had a melanoma removed in 1996. With the exception of 2 years, either he or I have had cancer. I don't see,, or hear the fat lady

Tomorrow, I will be ringing my Breast Care co-ordinator to relay this latest information, in the belief that I will be well informed. Better able to make decisions that will do more good than harm. There has to be a way than chemotherapy.

Is This Radiation Necrosis?

Confronting!

Painful

'Feelings like disappointment, embarrassment, irritation, resentment, anger, jealousy, and fear, instead of being bad news, are actually very clear moments that teach us where it is that we're holding back. They teach us to perk up and lean in when we feel we'd rather collapse and back away. They're like messengers that show us, with terrifying clarity, exactly where we're stuck. This very moment is the perfect teacher, and, lucky for us, it's with us wherever we are'

-Pema Chodron

The past 10 days have certainly kept me out of mischief with appointments and tests taking up any spare time, as well as keeping me away from the keyboard. 'Dr Amazing' continues to 'amaze.'

Who would have believed that, in the Public System, I would see my Oncologist, Physiotherapist and have PET Scan within 4 working days? Truly Amazing! On the fifth day I had my first phone call regarding the results.

Dr Andre has kept me well informed with phone calls each day, including updates. When he called me Wednesday he had just received the written report on the PET Scan. He was actually in Taree, which is probably 3 hours travel from the hospital at which he consults. He opened the conversation by asking if I had time for him to read the report to me. How cute is that? On listening to the report, I felt deflated and let down, wondering if this clavicular lesion is indeed recurrence of my original breast cancer or radiation necrosis as suggested by one of the doctors at the Mater Hospital at the time of my PET Scan.

I have chosen to go through my medical files over the past few days and, interestingly, I find that the lesion pictured above above is the very one that appeared within one month of completing a heavy dose of radiation. The MRI at that time had shown 'appearances consistent with amorphous infiltration of the right thoracic outlet involving muscles, brachial plexus and vascular encasement and axillary lymphadenopathy.'

While 'Dr Amazing' is concerned at what appears to be spread to several new areas, I now find it has been there, according to test results, in tests requested by my radiation oncologist. I will now be asking Dr Andrea to review all copies of the reports and reassess my situation. Taking a wild guess, I would say that, had my radiation oncologist referred me back to a medical oncologist, my current circumstances may well be different.. I was certainly disadvantaged, I would say, by the fact that my medical oncologist [ married to my radiation oncologist] has been off on maternity leave for over twelve months. Of course, this had to happen to me during that time.

According to mythology 'It's not over till the fat lady sings' and I have not yet heard her sing. Haha..

In the meantime, Cheryl is consoling herself with copious amounts of coffee, cookies and chocolate.



Confirmation of What?

'Whenever a doctor cannot do good, he must be kept from doing harm'

- Hippocrates

Regular readers of Indigo Dreaming would be aware that 'Dr Amazing' saw me on Wednesday of last week. Friday I received a phone call informing me of today's PET Scan appointment.

Being only short notice, the instructions for the scan had been given verbally. Haydn had written them on the back of a newspaper that went into the recycling bin the following day. As he had a 10.45am doctor's appointment himself, he dropped me at the hospital and went on his way. Knowing that I had to fast for six hours I was suspicious when Haydn said that he had been told I could drink tea, coffee and water. Before ordering my cappuccino I thought it wise to check with Nuclear Medicine. I was disappointed to learn that my cappuccino was on hold until the completion of my test which would be well after 3pm.

Staff were wonderful as usual! The nurse did weight and height before inserting the cannula. She then called the doctor who would ask me the routine questions. I mentioned that I had a clavicular lesion which appeared to be something 'different.' She was happy to have a look. I felt empowered when she asked me if it was radiation necrosis. I believe it was confirmation of what I had always suspected, in spite of the Radiation Oncologist being in denial.. The problem for me now is that I have no idea of where to from here. Tonight I asked the question of Professor 'Google' in the hope of finding answers to what appear to be unanswerable questions.

My understanding is that 'Dr Amazing' will have results by Wednesday.

'Change Starts When Someone sees the Next Step' - William Drayton

'Change is the essence of life. Be willing to surrender what you are for what you could become.'

- Author Unknown

Thursday morning arrived; we were up early in readiness for our departure to attend my 8am appointment with the Physiotherapist at the Mater Hospital. Leaving the farm before 7am left me sufficient time to pop my head into the radiotherapy waiting room. I wanted to check if my Sister and Brother-in-Law were there. B-I-L Brian is currently undergoing radiation, following hormone treatment for prostate cancer. Unfortunately, our paths did not cross on that day.

I headed upstairs and waited in anticipation of Judith's arrival. Her face broke into a smile when she recognised me. Interestingly, my file was not available, due to my appointment with 'Dr Amazing' as Emmy now has me referring to him. Shortly, there was a knock at the door heralding the arrival of my file. I was impressed! The Mater is a huge facility. It is very easy for things to go missing, which was the case with my scans recently. They did not reappear for months.

Judith noted that it was 14 months since my last appointment.  I was happy to give the explanation that her instructions were always clear, allowing me every opportunity to undertake practise on my own. With a home based programme, along with regular Tai Chi and Yoga classes, I have been successful in my efforts to keep the swelling under control. It is only when changes occur that I get myself into trouble. This appeared to be one of those occasions.

It was a surprise, and somewhat of a relief, to hear her say the lower arm was surprisingly soft on examination. A good starting place!  We have learned from experience that manual lymphatic drainage is not necessarily a good thing for me owing to a case of cellulitis following treatment with another therapist. During the examination, she was able to check areas that would be effected by spread to the brachial plexus. She did speak to me as she worked, noting both good and not so good points.

I let her know that Dr Andre wanted her to call him at the end of our consult. The hour went quickly. I felt comfortable to question her on her findings, asking her about her 'report' to 'Dr Amazing.' She did say that in spite of the 'positives' she was concerned about many issues.

At lunchtime on Friday, Haydn and I had gone downstairs to our vehicle when we heard the telephone ringing upstairs. There was no way we could make it back up in time to answer it so we made the decision to let it go to Message Bank. It was then the Cell Phone began to ring however, it was in a bag on the rear seat. Oh well! Time to attend to those calls on our return. That was not to be! The upstairs phone rang again; Haydn went bounding up the stairs three at a time. He called loudly to inform me that it was the Mater Hospital advising me of an appointment had been made for a PET Scan. As I headed upstairs the Cell Phone started again. This was getting to be ridiculous! This time, breathing heavily, I answered it to hear the voice of 'Dr Amazing.' He too was ringing to let me know about my upcoming PET Scan. My mind was ticking over. This sounds like 'serious' stuff.

It's Official! I've Been Classed as 'Unique'

'Our inner strengths, experiences and truths cannot be lost, destroyed or taken-away. Every person has an inborn worth and can contribute to the human community. We all can treat one another with dignity and respect, provide opportunities to grow toward our fullest lives and help one another discover and develop our unique gifts. We each deserve this and we all can extend it to others'

- Author Unknown

In spite of my best intentions, I still seem to be conspicuous by my absence from these pages. Some of you are aware that I agreed to a huge challenge by staying at the farm alone for 4 days while Haydn went to town to 'babysit'  his grandchildren allowing his Daughter and Son-in-Law to travel to Fiji. In his absence it rained, and it rained and it rained. I did not even attempt to drive to the mail box after the first day. Four inches of rain in 48 hours left the ground sodden and water logged.

On the Friday morning I received a phone call from the hospital giving me the news that I was scheduled to begin chemo on Friday 24th at 2.30pm. It came as a complete shock!  I had an appointment with my 'amazing' oncologist yesterday. It was Wednesday 22nd and there were questions to be asked. Concerns and fears causing me angst. On Monday I phoned the Physical Therapies Department of the hospital and was excited to be given a one hour appointment with Judith for Lymphatic Drainage on Thursday morning at 8am. I was thinking it could be the swelling that was preventing me from raising my arm. If only!

During the consultation with Dr Andre, I mentioned the sudden onset of the loss of the use of my right arm. Dr Andre looked up, put his pen down, and began to carry out tests on the arm.  His apprehension was immediately obvious. I waited patiently for him to complete his assessment before  commenting. He then said that we would possibly have to change our plans. Having ticked several of the boxes that were a concern to me on the Liposomal Doxorubicin Chemotherapy Patient Information Sheet, he noted that they were all skin related. He listened as I told him about my severe allergic reactions to minor things like ant bites. When he learned that I had not had any chemo education, he suggested that I was unprepared. The chemo would need to be postponed for the present.

It was then he 'hit' me with the 'biggie,' which was simply the possibility that the cancer may already have spread to the brachial plexus again. That would be the most likely explanation for the loss of the use of my right arm. Maybe it has nothing whatsoever to do with lymphoedema?

Knowing that he had just travelled to the United States and Canada for an Oncology Conference, I asked him if he had any experience to call on with cancer taking this form. He smiled his beautiful smile and replied 'You're Unique.' It's Official!

'As we grow as unique persons, we learn to respect the uniqueness of others.'

- Robert H Schuller

He asked me to have the physiotherapist call him after she had completed her assessment and therapy. He also said that as I had not had any chemotherapy previously, there were several other drugs that could be used. He would leave the Patient Information Sheets at the desk for me to pick up after my appointment with the Physiotherapist. It was then he said that, depending on the findings of the physical therapy session, he may need to do a PET Scan to determine exactly what is happening with this 'monster.' I will begin working on the next post, with some results, first thing in the morning. Thanks for reading♥

It's Happening Way Too Fast



‘Live with intention. Walk to the edge. Listen hard. Practise wellness. Play with abandon. Laugh. Choose with no regret. Appreciate your friends. Continue to learn. Do what you love. Live as if this is all there is.’ – Mary Anne Radmacher 

It is hard for me to accept how quickly changes are taking place in my body.

 Haydn left Tuesday morning to stay with his 3 grandchildren while his Daughter and Son-in-Law visit Fiji with a view to purchasing property.

I admit to feeling a little nervous about being on my own at the farm, in spite of the fact that it was entirely my decision to 'go it alone.' My lesion had been weeping; it seemed unnecessary to 'expose' my cancer, or myself, to the children. I have services available here; it is simply a matter of making a phone call.

Wednesday afternoon my skin felt like it had the 'creepy crawlies.' Several times I went to the mirror to check for insects on my neck only to find there was nothing. I also felt as if there were maggots crawling beneath the skin's surface, just as I do now. The feeling persisted!

Things appeared to be reasonably normal when I awoke this morning. On going to shower, I noticed my lesion was, once again, weeping. It was from the original sight, which was not expected. Attempting to place shampoo into the palm of my right hand, I found I could not lift my right arm at all. I was shocked! I found myself having to physically lift it with my left hand. The whole thing seemed to have happened overnight.

As the day has gone on I have been aware of the heaviness of my right arm. It is a 'dead' weight! It is more difficult than ever to perform any tasks. Previously, I had been able to raise it unassisted. I am no longer able to do that! I am unsure of what will happen now. Today I have done a lot of screaming and yelling in the belief it is a way of releasing some of the built up tension that has been slowly accumulating since my CT Scan in late January, heralding the beginning of the progress of this 'monster.'.

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?

Farm Life

'If something comes to life in others because of you,
then you have made an approach to immortality.'

-Norman Cousins (1912-1990)



'My heart leaps up when I behold a rainbow in the sky.'
-William Wordsworth (1770-1850)







'God gives every bird its food, but He does not throw it into its nest.'
J.G. Holland

‘Be as a bird perched on a frail branch that she feels bending beneath her, still she sings away all the time, knowing she has wings.’

– Victor Hugo

'Hold fast to dreams for if dreams die, life is a broken winged bird that cannot fly.'
Langston Hughes

‘The living self has one purpose only: to come into its own fullness of being, as a tree comes into full blossom, or a bird into spring beauty, or a tiger into lustre.’

- D H Lawrence

Managed to get a glimpse of this goanna as it scurried across the paddock

It is hard to believe how quickly these creatures move for their size



This beautiful Tawny Frogmouth Owl recently appeared on the railing of the Al Fresco area as the barbeque was cooking



'The wailing owl screams solitary to the mournful moon.'
-David Mallet

Determined to try to keep things 'light' this week, I have simply taken some pictures from the 'Farm' file adding quotes that I like.

Tomorrow I have another CT Scan to determine if there is any spread to the pelvis and the abdomen followed by an appointment with my oncologist Thursday to get the results.

It is my intention to ask very direct questions with the expectation of complete honesty. It is important for me to know exactly what I am facing.