Monday, June 27, 2011

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.

Sunday, June 26, 2011

'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.

Friday, June 24, 2011

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♥

Thursday, June 16, 2011

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.'.

Saturday, June 11, 2011

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!