To Chemo or Not to Chemo

'Most cancer patients in this country die of chemotherapy.  Chemotherapy does not eliminate breast, colon or lung cancers. This fact has been documented for over a decade. Yet doctors still use chemotherapy for these tumours…Women with breast cancer are likely to die faster with chemo than without it.' -
Alan Levin, M.D

Arrived in time for my appointment with Dr Amazing determined to listen; I simply wanted to hear what he had to say in response to my own research.

Firstly, he went through the information regarding HYPERBARIC OXYGEN THERAPY and I was disappointed to be told that I am not a potential candidate due to active cancer cells in what is now being called a fungating tumour. Dr Andre did make it clear that if it was purely Radiation Necrosis the Oxygen Therapy would be useful. He handed me the information and explained that the physicians at the hospital would be more than happy to discuss my case with me personally. So, NO Nanoknife Surgery, NO Hyperbaric Oxygen Therapy.

We then went to the use of chemotherapy. Dr Andre asked me why it is that when I am in his rooms I say 'Yes, Yes, Yes,' only to ring two days later and say 'No, No, No.' I laughingly said that is what happens when I am away from his influence. When Dr Andre asked the nurse to take a photograph of my lesion, Haydn asked her to take one of Dr Andre for me to take home. That way, I could look at it when I felt myself waivering..haha.

We asked if chemotherapy would work on my type of cancer. The answer was 'I don't know.' When I suggested to Doctor that this was 'my' body growing this 'monster' so it had to be my underlying body chemistry that needed to be changed, he agree. Just how we do that he does not know. Seems to me that chemotherapy could be nothing more than a 'Band Aid' fix in my case!

I explained my thoughts on being 'locked in' to waiting rooms and hospital visits at this stage of my life. Immediately, and I mean immediately, he suggested oral as a way of avoiding that situation. Once again, I left the hospital agreeing to let him know as quickly as possible of my decision.

'To be complete, a healing system must be able to cover the entire field of human experiences-physically, mentally, and spiritually.
Any system which denies any part of this trinity fails in its attempt to heal to the same extent to which it denies any part or parts.'
-Stanley  Burroughs

Psycho Oncology Appointment

'Wisdom is to finish the moment, to find the journey's end in every step of the road, to live the greatest number of good hours.'

-Ralph  Waldo Emerson

Recently I met with my Breast Cancer Support Group [Group 33] for lunch. It had been several months since I had joined my friends at the monthly lunches. They found it necessary to summon me! These women are very good at giving me a 'reality check' and deemed it necessary.  It was good to get together! I felt the love; surrounded by people who care, making it good for my soul. It was the perfect opportunity for them to observe my lesion, as well as notice the changes in my manual dexterity. They were shocked!

Vickie, being the outspoken member of the group, with experience in both nursing and palliative care, decided that I needed help. Time for me to see a counsellor! She mentioned the name of a psychologist; fortunately it was one that I had seen previously when she was attached to the chemotherapy and radiotherapy departments at the hospital. A time was set for Wednesday 20 July.

There was much laughter during the 2 hour session; in fact it was freeing. Cath established very quickly that she felt I had a form of Post Traumatic Stress, explaining that it is quite normal, even to be expected, with each new crisis building on pre-existing conditions. I laughingly accused her of putting a label on me!  I felt a tremendous benefit in talking to a counsellor who, although she does not have cancer herself, works daily with patients who do, hence the name 'Psyco Oncology.'

To be perfectly honest, I have no idea what we discussed during our session except that Cath indicated she felt it would be good to have a further session focusing on my feelings in regard to the hospital and possibly radiation damage.  It seems to me that with so many positives coming out of my appointments with my Health Care Professionals at the hospital, it is a shame to allow my feeling towards one young, inexperienced doctor, get in the way of all the good. It is possible that education and youth are no match for experience and wisdom. In my case following the text books has meant ignoring the fact that we are all individuals and there is no 'one size fits all' approach. My understanding is that this will change. It will probably not be in my lifetime, however, things are changing. There are approximately 60% of patients that will benefit from the tried and true research,  leaving a high percentage of the population that need to be treated as individuals. I think I know which group I come into! Hmmm...



Message from Spirit

Nankeen Kestrel courtesy of 
http://en.wikipedia.org/wiki/Nankeen_Kestrel

This morning we woke a little later than usual, due mainly to a previous late night and a cool, damp morning. Life seemed almost perfect as we listened to the rain on the rooftop over the sound of our favourite radio commentator. Just the day to stay in bed! Unfortunately that was not going to happen as I had an appointment with my Psycho-Oncology lady. As usual, Haydn was to wear his driver's cap.

I prepared for the shower and, as I found myself peering through the foggy glass shower screen towards Barrington Tops,  I noticed what I thought was a familiar bird on the railing. Rather than looking outwards, possibly for prey, I noticed it was turned towards me. It appeared to be looking me in the eye. I assumed it was a baby King Parrot; there had been one around over the past couple of days. Thankfully, Haydn chose that time to brush his teeth. We were able to talk about our visitor. I was thrilled when Haydn said he thought it was some sort of falcon. Of course, I sent him running for my spectacles, along with the bird book. He was quick to point out that it was  Nankeen Kestrel (Falco cenchroides.) I could not help but notice that it continued to sit and watch, appearing to make eye contact, which I found most unusual.

Once dried, I  reached for my copy of Animal Dreaming by Scott King, who writes that Aboriginal Legend says that the Kestrel is the protector of the warrior spirit. I can expect to be watched and protected against any further attack. An Ancestor Spirit to some tribes, the hawk/falcon is the bringer of good tidings, healthy change and victory. To have a hawk visit suggests I am to receive a sign or a gift from spirit. My visitor alerts me to watch for signs guiding me to the next phase of life. It reminds me to be vigilant; willing to act quickly. I am reminded that it is OK to ask for messages during prayer and meditation. This is a time that I can ask for, and expect to receive, Spirit's guidance.

'Love and desire are the spirit's wings to great deeds.'

-Johann Wolfgang von Goethe

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.

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♥

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?