Monday, July 27, 2009

waiting thoughts and plans......

So PCR blood has been drawn for this test, it's been sent off and ...........well..... I am not 'freaky' at all. Yet. :) Steven's cbc came back as close to perfect as one can get and for some reason this PCR blood sample has traveled across country this time with hardly a thought from me. It's soooooooooooo good!
Steven looks great and his sense of humor is firmly in place and I realize just how much of a help this is to me - to see how good he is all round. It's like this picture, which is of the tip of a leaf of an insect eating plant.......... see how most of those little sticky bubbles stand by themselves? And then on the right, there are two sharing the load..... I see this so often in the close up photos I take. It's nature to give a helping hand and sometimes we need it when everything around us seems so right, so normal and there is no trauma around, sometimes it's right then that someone needs that sharing of the load..... Anyway - that was my thought as I found these sticky globs in my camera lens.
My one son in law is headed to Afghanistan in October, and the other son in law is heading off to boot camp mid September.... Oh boy, it's times like this that I am glad that Steven won't be joining the armed forces! Yes, that sounds selfish but he is already fighting a huge battle of his own - he deals with it every day and ........ well, I am glad he is not also in this branch of the armed forces! Hats off and great respect and love to both my sons headed that way. Be safe, guys! Stay strong, my girls - they will be back. Everyone has things and battles to overcome and each is no less important than the other....I notice this more and more in everyday life.
I think that planning a trip is about the best way for me to be able to push those pcr results, and other life issues, aside - for a while, at least....... and this time is no different. Maybe we should just plan a trip away for every pcr test done?! Well, this one is a major one and I am so excited that I can hardly sleep! We are off to the Galapagos Islands, the Amazon Jungle and Machu Picchu........... and we leave in the last week of September - a mere 6 weeks away.
At first I wanted to wait till Steven's results were in, but that would be letting cml rule my life in a way that I don't like. So, with a niggle that still won't go away, but a determination to live every moment of my life and not give this leukemia in my son more power over my life than it already has, we decided to go ahead and the final plans will be put into place and the booking done this week. Before those pcr results are in.
It can only be one of two things........ the pcr will come back higher or lower..... ok, ok - or the same, three options. Option number one = lower, and then my heart will be extra light again; option number two = same as last time, which is also great! and the last would be a jump in which case another pcr test will be drawn in a month's time and then a months waiting will put us right at the time we will be heading back home or already here. See? Calculations all done and neatly sorted.... now just to get my heart to listen!
No, I am sure it will come back just fine again this time....I never realize how much hope and energy goes into this belief, until those results hit my brain. The relief is always almost surprising, tremendously wonderful and very welcome. And I am going to believe that it's going to be this way again - no reason to think otherwise.
On a more serious note....... leukemia claimed yet another wonderful person, Michelle, this past week. She was only 27 years old and made such a huge difference in so many lives.... if you know someone who is not on the marrow registry, talk to them, tell them how important it is and send them to Michelle's blog - one of us really can save someone's life. Here is another young person, who even though critically ill, put herself out there to help others to live - and she succeeded too! Michelle, the world is definitely poorer without you here with us. Go well.
Love, light and hope

Friday, July 10, 2009

more hope.....

Data showing the ability of omacetaxine to kill leukemic stem cells in mouse models with drug-resistant chronic myelogenous leukemia (CML) are the subject of an advance online publication in the journalLeukemia, ChemGenex Pharmaceuticals Limited (ASX:CXS and NASDAQ:CXSP) has announced. The findings of this study provide new insights into the problem of minimal residual disease and may open the door to the development of a curative treatment strategy for some patients with CML.

Here is the rest of the article..

Thanks to Hans for the reminder about this article.... it's this progress that keeps me sane, keeps my life on an even keel....  
And then I find one of my pictures that really do inspire me as well.  Look at the barren-ness of the landscape around this tree - and its holding on and growing too!  We have so much hope for the cml-ers of today.  Just wonderful.  
It's easy to get scared at times with CML, it's not something that is totally controllable for ever, it's not something that once under control will always stay that way.  CML can do whatever it wants and we will all just have to adjust to that.  Again.  This is why the tests are done so regularly - to keep an eye on it so that we can catch it if it decides to mutate or take a different course.
Yes it's scary and yes it's cancer and sometimes I need to remind myself that all three my kids are exposed to all sorts of things that could harm them every day - all the nuts on the road, falling aircraft, other diseases, biting dogs and things like the swine flu.  
Thats when I really do 'get a grip' and count my blessings that our lives are not totally run by CML and that we do have the space in our minds to worry about, and enjoy, the normal things of every day life.  This takes time to get to and the first year was really the worst for me as I got used to having to stand back and wait and then to try to learn to control my worries and fears.  And again - we have been so fortunate that Steven's cml has not been giving us too much of a rocky road.  I really wish it were like this for everyone...  (you too Kelly and husband.)
I just know there is going to be a cure for this disease - it may entail encouraging my child to take arsenic or something else I cannot spell, it will entail being totally thrilled with test results in the below zero range.  I hold in my mind the picture of the celebrations that will be held world wide when this happens.  I also hold in my mind the pictures of many people who did not get the chance to hang around till that time - and they hold a special place.  They are the people who tried different drugs, were in the drug trials, who helped the scientists and doctors try new things or note the drugs that did not work under certain circumstances.  They are the people who opened the road to the cure.  Makes me quite tearful to think of just how much we all owe them.

love and light

Saturday, July 04, 2009


Mostly I am pushing the barrow, but sometimes I am the one inside....  

These past two weeks I have found many things to write about.   Sometimes I want to rant and rave against all sorts of cancer and it literally hurts to read about the battles some people are going through, just fighting like hell to stay alive and have some quality of life.  Two that come to mind immediately are Michelle and Nick.....  Here are two young people who are good people, well liked and much loved, doing good things in their lives and whamo......nothing will ever be the same again.  Ever.  No matter what.  So much is stripped not only from them but from their families and friends.  I know it hits everyone really hard when someone is fighting like this for their lives, but I find myself identifying with the mom's of those with the cancer and I want to kick and scream against the unfairness of it all. 

There is absolutely no way that I can begin to feel or imagine what the mom's are going through, but I have to admit that at times just thinking about it squeezes my heart and soul and makes my eyes leak.   Most times I don't allow it to become too 'real' for me because that just opens a door that I have no need to go into.  A lovely lady, Lottie, once said to me that worry is like a rocking chair - it goes nowhere.  Well, I do my best to stay out of that rocking chair, allowing only short visits and making sure I don't get too comfortable there.  

About two years ago, I spent the night staring out of our kitchen window, looking at the crowds gathered at the funeral home just up the road, and then watching as they left again.  There lay a young man who was killed while in the Service in Afghanistan.  Someone had told me that his mom would not leave him there alone, so she stayed with him all night long.  I don't know why it got to me so deeply, but I stood there much of that night hurting for her so badly.  I made the mistake of almost trying to take on her pain, trying to feel what she was feeling and trying to make sense of it all.  I was scared that I would be in her shoes one day way too soon.  I know now that that is not my place and not a wise or smart thing to do.  There is no need for me to spend time in that rocking chair, but others do - and I really hate that.

Almost all the time I can, and do, see the positive side of things, especially after a day of having Steven work with us in the shop.  He is so easy to work with, full of life, jokes and fun and learning so well.  And CML really does not feature in those days any more.  Sure there are small moments, and mostly those are thankful moments, not one of worry or scared-ness.   

I think that what I am trying to say is that there are multiple ups and downs in each and every day, the downs are few and far between.  Sometimes it just does not seem to make sense to write all about them without it all seeming totally crazy.  

Sometimes I see a photograph that I have taken that helps me describe what I mean.....and this wheelbarrow does it.  Mostly I push that barrow that is life, I have the control over my feelings and thoughts. But a few times here and there, I am the one parked off inside letting life and all the things in it push me around.  But only very short times these days.

I am so incredibly grateful.  And I wish I had a magic wand for all those mom's that don't have the peace that I have.

Love and light