Wednesday, May 25, 2011

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!

Thursday, May 19, 2011

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?

Monday, May 16, 2011

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.

Wednesday, May 11, 2011

The Cancer for Which There is No Cure and Few Treatment Options

'Start by doing what's necessary;
then do what's possible;
and suddenly you are doing the impossible'
Francis of Assisi

At the time of my breast cancer diagnosis in 2003 there was nothing to photograph.

In December 2005 I underwent surgery to remove this tumour that had begun to grow on the outside of the breast. It appeared to be fungating.
After very successful surgery, and 5 days in hospital, things were looking decidedly better. My chosen surgeon's handiwork was remarkable!
In April 2009, after months of agonising pain, a diagnosis of recurrence in the brachial plexus was made. I underwent 30 sessions of radiotherapy believing that it was the only option available to relieve the pain and treat the cancer.
At no time, either before or during treatment, was I informed that there was an increased risk of secondary cancer.
Haydn refused to take photographs as the therapy continued. The burning and blistering was probably 4 times worse than the pictures show.
I am now living with soft tissue cancer caused, according to my Medical Oncologist, from the high doses of radiation. Hidden away under the lesion is my 'tatoo.' 
We are now measuring and photographing the lesion to keep track of its growth.

In an attempt to further educate myself on the possible outcomes of my 'latest' tumour I have been making an effort to research 'fungating' tumours. My first attempt left me feeling quite distressed. It is important that I take one step at a time, and do not get ahead of myself, which is easily done. I did have a discussion with one of the Palliative Care nurses, however, although well intended, the possible outcomes are quite frightening.

It seems my latest tumour is a fungating tumour and, although not normally fatal, complications can be. I am hoping that through blogging I will learn more about possible treatments and outcomes. I understand these tumours can be very confronting as they are so unsightly. The stench is unbelievable! The risk of morbidity is high! Overall not something to look forward to!

Although I am jumping ahead slightly, I am looking at both Manuka Honey and Medical Maggots as possible treatment options for the wound. I think it will be up to me to find the best treatment options in an all out effort to live as well as I am able, for as long as I am able.

May God bless you for sharing the journey.

Wednesday, May 4, 2011

Paul Comes Good

"You cannot poison your body into health with drugs, chemo or radiation. 'Health' can only be achieved with healthful living."  -T.C. Fry
Yesterday, while visiting my General Practitioner, I found yet another reason to hold him in high regard. He took the time to explain the likely outcome of my soft tissue lesion. Having previously been told by the surgeon that, in his opinion, surgery could do more harm than good, I have been at a loss to know in which direction to turn. Dr Sales likened my tumour to the body of an optopus. Should that body be removed,  it would still leave arms (tentacles) intact. The surgery could leave a gaping wound that may not heal, as well as active cancer in the many area of the tentacles. With disruption to the blood and lymphatic system, and without efficient circulation of both, skin function would be severely impaired resulting in congestion and build up of waste material in the tissue, ultimately causing tissue death. The end result is a fungating wound not able to heal. Apparently they are very confronting, as well as being extremely smelly and uncomfortable. Definitely something to be avoided!

I mentioned to Dr Sales how much I appreciated the fact that he had taken me on as his patient when my own doctor, of long standing, had given up on me. We made a pact (kind of) that he would continue to seek answers as for as long as it takes. It is a very special human being that takes on a new patient with a chronic disease when his books have been closed for years.  I am also Bulk Billed, meaning that he makes practically no money from me.

Tonight I am also pleased to be able to say that I have now had a phone call from Paul, my Biochemist friend. Without saying more than is necessary, I feel it is critical to point out that Paul is no longer able to practise in his chosen field. He was written up nationally as being a 'cancer con man' in 2005 and, after a lengthy court battle, he lost all rights to practise as well as all computer records. I remained loyal to him as I felt his past had nothing to do with my present, and treatment. He has always said he is very grateful to me and will do whatever he can to be of assistance.

When he called me today he explained that people do not always get back to him when they say they will, plus the fact that he is dealing with different time zones. He assured me that he will always come good, however, it may not be in 'my' time. Thanks Paul. I was also interested to learn that many people still hear of him by word of mouth and he spends quite a lot of time seeking appropriate treatment for those in need. Not bad for someone that is a 'con man' and who does not receive any payment for the work he does in spite of being in an unfortunate financial position.

He apparently has a 'consensus' and has come up with a 'plan of action' for me. I will have to order some Chelated Potassium online bit will be able to purchase the other product recommended at my local Health Food store.

I remain optimistic that, with appropriate treatment, we will be able to prevent this lesion breaking through the skin's surface where it could do a lot of damage.

Sunday, May 1, 2011

X Marks the Spot

'The struggle of life is one of our greatest blessings. It makes us patient, sensitive, and 'Godlike.' It teaches us that although the world is full of suffering, it is also full of the overcoming of it.'
Helen Keller

As mentioned in my previous post, research has me believing that my current cancer crisis is a result of radiation treatment that was, not only ineffective, but damaging. The lesion growing on the clavicle is actually at the site of the radiation tattoo given prior to my treatment. It was intended to be used as a guide, allowing the rays to be directed accurately. With this 'monster'  growing on my clavicle, it is obvious that the 'tattoo' is almost directly below it and only millimetres away. Too close for there not to be some relationship between the two.

From what I can make out, it is possible that the cancer cells were damaged with treatment rather than killed. At no time was I told that secondary cancer was a possible [probable] side effect. I now ask myself why I did not undertake more of my own research; as I  would normally have done ? In reality, I had been in severe pain for months and felt so relieved to actually be given the diagnosis of Breast Cancer recurrence in the Brachial Plexus that it was exciting for me to learn that it would 'cure' my pain, thus reducing my need for Opiates. I believed the Radiation Oncologist when he told me it was my only option. He offered me Hope!

Apparently, when the cells are damaged they become radical cells causing the body to produce growth hormones in an effort to heal. Instead of having a slow growing lesion I now have a cancer behaving aggressively. Each day I scrutinise the area to determine if there is an increase in size. It is currently about 8cm.

Cancer of the soft tissue is not normally fatal. What I do not know is how I am supposed to overcome the pain and suffering that is beginning to rule my life again. I refuse to increase my Oxycontin dosage, after all, getting off of the opiates was the reason I agreed to undertake Radiation Therapy in June 2009.

I spoke to a Biochemist friend and I believed him when he told me that he had scheduled a conference call with three other Health Care Professionals for 11am Wednesday morning. I was to call him Wednesday afternoon. Unfortunately, when I made the call he abruptly said that HE TOLD ME he would call me Thursday. I felt disappointed! I mentioned it to Haydn who, fortunately, had overheard the original conversation. The arrangement was that I WAS TO RING Wednesday afternoon. I have heard nothing since and my pride will not allow me to call him again as he appeared to give me the 'short shift' on the last call.

Guess that leaves me on my own for the time being as I wait for for another door to open.