SCHOOL, LUNG FUNCTION TEST AND ENDOCRINOLOGIST

14th to 20th May 2011

It took a long time for me to recover from the effects of my glycogon test and even on the weekend I was still not back to feeling 100%.  However I don't think on any day I feel 100%, some days for me are better than others, on my good days I try to make the most of my strength and health.  Jarrett had running training at Stromlo, it is a purpose built Cross Country Course designed by Robert de Castella, it normally has a lush green cover of grass but with the cold weather it tends to go a grey colour because of the type of grass.  I wanted to walk some of the course so I asked Mum and Dad if they could walk beside me, holding onto my arms and balancing me,  I guess you could say they acted like crutches for me.  I wanted to walk the 1km loop, I knew that was far enough considering how ill I had been during the week.  It took me the hour session that Jarrett had but I did it.  The ground felt so strange under my feet, extremely uneven, it was almost like walking on lots of cushions at different intervals and on a few occasions I did off balance but had the support of my crutches - Mum and Dad.  My calves were rather painful after the walk and continued to be painful and stiff as well as having pain and weakness behind my right knee so on Sunday my walk with my rollator around the AIS was also much shorter than usual. 

It was back to school on Monday for a hectic week learning new topics as well as an endless number of assessments.  In Maths we are learning Pythagoras's theorem, I love it, it is so easy, in Integrated Studies we are looking at modelled problems, in Science our topic is The Law of Physics so we looked at Newton's laws, in English we were inspired by listening to and watching Martin Luther Kings I have a Dream speech, for Art I continued working on my emotion sculpture and in Information Technology I did more work on my power point presentation. 

Our nights have been arctic with thick, heavy frosts with subzero temperatures, yet the days have been pleasant when the sun shines melting away the ice, leaving it glistening like diamonds on the grass and plants.  I have an electric blanket on my bed and I just adore the warmth that I am instantly greeted with as I climb under the covers each night.  I have noticed that with the colder temperatures at night, my bones have begun to ache and I sometimes wake during the night with a chilly head, my head is still lacking a luxurious cover of hair, so those bald patches get cold easily.

I had a lung function test this week, when I was in Sydney I used to have to have three different tests but I only had to do one of them this time.  I knew the drill, the person doing the test did not even have to explain to me how to do it, I guess you do become an expert when you have to undergo a test frequently.  The result was okay,  my lung function is on the lowest side of normal which it was during chemotherapy, so that is stable.  I may have to use a puffer regularly just to assist my lungs a bit more and especially if I become ill with a cold.

My week ended with my Endocrinology appointment, waiting in the hospital I was feeling anxious about my results.  I reflected on the fact that when I had radiation I thought it was easy compared to chemotherapy which had made me so dreadfully ill.  I even remember asking for more radiation instead of chemotherapy but radiation has more unpleasant long term side effects.  I was about to find out just how many when I received my results from my tests.  They showed that I have multiple hormone deficiencies, cortisol issues, a growth hormone deficiency as well as an unexpected and generally rare effect which only 5% of patients get and that is radiation caused high cholesterol because of the results I now have to have more tests, in fact three quite invasive tests in one day.  These tests are going to be done on 1st June, from those results treatment options will be looked at and perhaps even more tests.  The doctor is going to apply for growth hormone replacement therapy which has to all be approved and can take some time.  The hormone replacement would take the form of an injection which Mum would have to give me on a daily basis.  He again reminded me that my spine will not grow at all because of the radiation, only my legs will grow with this treatment.  I have also been told that my face will outgrow my head which will not grow any further either, if you have a decent amount of hair that can hide it a little, however with my hair been so scarce, it will be better for me to wear wigs to help this.  On a positive note, my thyroid results were not as severe as he expected, however he has warned me that he expects this to change within the next few months.  Having a positive was terrific as the news was quite difficult to hear. 

Life goes on and what I can take from today is that there is treatment, it may not be pleasant, it may also have numerous side effects but something can be done.  As always I make the most of every day and look forward to trying to do as much as I can into the future.

Jarrett is racing in a 5km Cross Country point score race tomorrow afternoon, Nalani is singing with the choir at the opening of a new library  and we all have homework to keep us busy this weekend.  Nalani's knee is mending well, she is now jogging on the spot and doing straight line jogging, some drills and is still working determinedly at the gym. 

I am still winning the footy tipping leading with 45, Nana is on 42 and poor Pop is trailing behind on 40.  Last week there were so many upsets, I am hoping that this week  is a little more predictable.

If I am ever feeling low,  I always remember that there is always someone out there who is worse off than I am, I look at my family who love me so very much and then realise what a lucky girl I am, all my clouds are whisked away and replaced by the sunshine of my smile.