Sunday, January 10, 2010

The bugs in life....

The New Year has always started with a goodly dollop of hope mixed in..... hope for warmer weather, for a start! I have always made resolutions and not many have succeeded so I stopped doing that.. well, definitely stopped the ones that included the words "diet", "food" or "thinner". I have found that to resolve to worry less and live more for the moment is tied directly to what is going on in my life each day, so that is a useless resolution.... This year my resolution is to just be. Just be everything I can in each moment of the year. Sometimes it will be less than I should be, sometimes more..... but in each instance - I am going to allow myself to Just Be.

Months and months have gone by with so little worry about cml on my part..... there are a good many days where although cml is in my mind, it's not in worry format... it's just there, a part of every day life and actually rather gentle and easy on the mind. It's so good to let those terrible early days just gently waft into the distance in the rear view mirror and smile in thanks of the good things that have come into my life because of Steven's cml.

But tonight that peace was rocked upside down again by these words: "One patient in particular had a very hard time and after an initial good response to Gleevec became resistant to everything. Turns out she had developed T315I. Her disease was particularly aggressive and had seriously compromised her overall health. She went on the Omacetaxine trial but was really too week to withstand the treatment.

With very few options left, Pauline spoke to a few doctors and opted to try a BMT as a last resort. She knew, as we all did, that this was very risky and the prognosis was not good, but she had no other options to explore: either you go into hospice care or you try for the 20% chance that it just might work for you. Her disease had not yet gone into blast phase. Her sibling was a relatively good match.

Unfortunately her fragile system was unable to help her new cells engraft. Pauline, a fellow Canadian CMLer, left us on Wednesday. She was a warm, loving, brave person."

My heart goes out to Pauline's family and friends...

I know that this does not happen to everyone, actually - not to many at all..... but its NOT what I want to read about and this happening to even one person is too much for my internal comfort! I am so grateful that Cheryl-Ann did post this on Jerry's support board, because it makes me think.... makes me aware of every day of my life again. It reminds me how quickly everything can change for any of us, and not necessarily in regards only to Steven and cml.

I don't want read about someone with cml not responding to anything and ultimately dying because I want to believe that the meds of today will just make this a simple, totally and completely controllable disease. I want to believe that there is no need anymore to worry about Steven or any of the others I know with cml, I want to believe that the worry days are behind us all - especially Steven and Laura. I want to believe that Steven will just take his 400mg Gleevec every day and the road ahead will hold no more surprises

But life just is not cut out like that at all.......the bugs in life are still around.

It's funny how I was quite happy to jump into a lake in the middle of the Amazon Jungle that I knew had pirana, boa's, cayman (alligators) and many other critters in it.... The boat was not even fully stopped and I was overboard with a smile .... but hearing of one person passing away while having cml literally stops my world and makes me think again of what is really important in life.

It makes me think that no matter where we are in life, there is beauty. Sometimes we cannot see it, sometimes its not our time to see it, but its there... always...
So, this year....... I am going to 'Just Be' - bugs and all. I am going to jump into those waters, over and over again in my mind, enjoying life in the 'peaceful zone' as long as possible.

Lea - a special note to you....... 4 years has passed since you first heard about your cml and you and your family have been down a very long and rough road, but all along, you have inspired, helped and encourage others, me included. You are tremendous, amazing and a very powerful person.. The 'bugs' in your life have not stopped you in any way - you just keep on powering through everything handed to you with love, grace and a smile.. I don't think you even know just how inspiring you are to so many people. A huge thank you! And may this year not only be wonderful, but wonder-filled for you all..

Sooooo..... may this year be all it can be.

love and light

1 comment:

Barbara (UK) said...

Annie, I so love the way you write. You have such an incredible way with words. Thank you again for inspiring me and making me rethink life and all it hands us. You have such a great gift....simply wonderful! xxx