Tuesday, January 19, 2010

Always lurking.........

Maybe it's because of the stuff in my last blog, maybe it's because its nearly PCR time again or maybe its just me being a worry-wart mom........ but my antennae are up and vibrating again.  Steven has his PCR blood draw on Thursday and then its that long interminable wait - again.

On Saturday he casually mentioned that he had been losing weight - around 5 pounds this month..... this was after I noticed his wedding ring was really loose...  Losing weight?  Why??  Spleen? sick? What!?!?  aaaaaaaaaaaaaaarrrrrrrrrrrggggggggghhhhhh.  How I hate when this happens.  So I really want to jump all over him and ask why and what and when and how come he can lose that weight and I cant!  I want to make light of it, I want to believe that its just the normal up and down of weight in a very normal way.... and it probably is.

But I am sooooooo tired of 'probably'!!

I have noticed that there are many days that I don't even think of cml now, that life has sort of absorbed cml into the big picture on many levels.  Its not that I am ignoring it - that would be like ignoring the air we breathe..... It just is.  But then come times like this past week where everything piles back into my brain again and, well, its just plain uncomfortable and it effects my days in ways I don't like.

So here is my dilemma/question...... I believe that if something is bothering Steven about his CML, I believe that he will talk to me about it.  So when I feel like I did when he told me about the weight loss, do I then immediately think of cml and ask the questions? or do I assume that its just normal fluctuations and let it go or make light of it?  If I ask all the questions, maybe that comes across as too much of a worry mom and if I don't maybe I come across as if I have moved past it all and am not as tuned in as I should be.  Big Sigh.

I know that we are so incredibly fortunate on so many levels, I know that some people will not even understand why I worry like I do sometimes as "all is ok" and "its all under control", but I do!  Yes, Steven's cml is under control and he is in a safe place with it..... yes his blood counts are all looking fine and yes it seems crazy to worry.  But this is life and this is me and its flippen PCR time again and my nails are already short....

CML is always lurking like a shadow in my heart and mind - always capable of turning a day, a week or my life upside down.  Soon these next results will be in and my nails can grow again and life will feel less tenuous again and it will be warmer too and.......... and.......and.

Today I am a bit sad.  Sad that Steven and Laura are dealing with cml as well as starting out in life.  I know that many others have much deeper things to deal with, but this is their story and I am sad that they have this as well.  Just because this is by far not the worst case scenario does not mean that its not big in all our lives and sometimes I feel almost guilty for taking this so deeply when so many others have the loss of their kids to deal with.

I just want so badly for everything to be good....... damn pcr time..  This will pass too.

love and light

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

Wonderful news!

Dylan B - Son of Matt and Wendy........
Here is life, hope and a brand new baby soul bringing joy to his very happy parents. Despite Matt having CML and being on Gleevec, Dylan arrived on the 27th December 2009, a couple of days early, perfectly healthy and absolutely beautiful...... :) See? It looks as if he is already calling the shots and telling the world what to do - just look at that little finger!
Congratulations Matt and Wendy.... what a beautiful little son you have. Read Matt's CML blog here.. http://hatefulblood.blogspot.com/.

The birth of their little boy is such positive news, not only for them, but for the CML community. These babies are commonly referred to as "Gleevec Babies" - Gleevec being the cml medication Matt uses to keep his leukemia at bay. Each time I read about a baby born while dad is on Gleevec, it makes me smile just a little wider. By the time Steven and Laura are ready to start a family, I know I will worry just that little less.

A big thanks to Matt and Wendy for sharing their news with us all........

love and light