It's Christmas again!

Where has the year gone!?  It's difficult to believe that it's this time again - Christmas.  It snuck up on us this year again....... I think I go through this denial every year - one day I will simply get ready in time and it will all feel right and right on time.

Once again I have my Christmas tree up and once again it is covered with little gift decorations depicting all the lovely people in my life.  Some of these little gifts have come with me the past few years, and others are newly added, but they all represent someone who means a lot to me, who has shared themselves, their fears and dreams with me too.  They represent the incredibly strong, courageous people all over the world that have changed me into the person I am.  I like me, by the way, so it was a good change!

You have all taught me strength, love, peace and acceptance and understanding even while going through tough times yourself.  You have made me laugh, cried with me, walked with me and shared with me..... you are the gifts in my life.

And you are on my tree!

And a candle in memory of those who are not here to celebrate Christmas with us - I burned a candle for you all, for you and your family left here to make sense of this life we have.

Here's thanking you all for yet another year with you and wishing you all a simply beautiful Christmas and a New Year that is filled with love, peace, laughter and peace.

Love and light and thanks
Annie

I just love this.....

I took this photograph out west somewhere.  It's a photograph that has lived in my heart and soul ever since.  I wish I could find this man and thank him for all the inspiration and hope he has built in my life.

Stop 'n Go......

Ok, the new pcr results are in......... and Steven passed again!  With a little jump downwards this time, we are all fine and can get on with less stressful stuff for the next three months again.

This photo reminds me of life around PCR time - stop 'n go, gas and anchors....
Not quite sure how to go on until the results come in, but at the same time determined to go on no matter what, but that tiny niggle of doubt, or is it fear, lurks in the back of my mind, making sure that going forward is not a totally smooth road.

But, once again, the worry was for nothing - it's good.  It's good again.  It's good still!

And so life will tootle on forward, filled the deep gratefulness that Steven is still responding to his Gleevec well, that there are no adjustments to make and that he is feeling great too.  It's quite amazing that no matter how much or how little I worry about these quarterly results, I am always deeply grateful afterwards.  Well, I am always deeply grateful, but it seems to come with a special depth in the days right after good results.  It's times like this that my heart aches for the mom's who did not get the good news results, for those mom's who have lost their children to this horrible disease.

And so.... till next time.

love and light
Annie - one very grateful, very relieved mama :)

It's been a while...

Steven had his pcr drawn about two weeks ago now... and his results are about a week away.  And I am about as "un-frilly" as I have ever been about it.  He looks good, sounds good and is getting on with his life in a very normal way.

It's quite amazing how 5 years, well, five and a half, can feel both long and short at the same time.  I see advertisements with Christmas trees in them already and it makes me aware of just how fast the years are screaming by.  This year my Christmas tree will again be filled with little gifts depicting all the treasures and gifts I have received through Steven's cml.  All the friendships, the experiences, the learning and the love I have been shown, I love having them decorating the tree.

Life sure takes some twists and turns and Steven having cml is the biggest to me.  It has made the greatest impact on my life, my growth, learning and understanding.  Its affected my life in ways that I never imagined and hopefully soon I will be able to really start giving back somehow, to help others the way they helped me through this dealing with cancer in my child.  I know that I am incredibly fortunate that Steven is responding so well, and every day I am extremely grateful for this. At the same time it has been a heck of a ride - even with everything going relatively smoothly.  There were many times that I just did not know how to go on, how to 'just be'..... but there was always someone there to walk with me through those tough times.  So many of those times it was someone that I had not even met, someone walking a similar road that just 'got it', understood and was there for me.  It actually brings tears to my eyes just thinking how that worked, again and again over all these years.  What wonderous, amazing years these have been!

My Christmas tree is not going to be big enough to carry all those little gift decorations!  What a thought.

R.I.P Steve Jobs

“Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart. Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma — which is living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice. And most importantly, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary” -- Steve Jobs

Taking it easy......

And so the results came in - all ok again.  Just a little just upwards, but nothing that has not happened before.

As a matter of fact, I have been so 'relaxed' about it all that I have not updated this blog with those results - even though we got them in a couple of weeks ago already!  Sorry........

This is a strange and new place for me to be in, this lack of real worry, of acceptance that those results will be ok, less ok or more ok - but they will be just what they are going to be.

I know it helps tremendously to know that Steven is really good about taking his Gleevec, that Laura keeps on his case and that they both know and live the importance of doing this the right way.  Steven looks great and life is pretty much cml free - well, free of the daily thoughts and worries.  Few side effects still make that easier too.

He, we, are so incredibly fortunate that he has responded so well to his meds.  I read other's blogs, I read the boards still sometimes but I am mostly just enjoying wallowing around in the sunshine and sand of good and peace-able results that allow me to do the 'normal' stuff in life.  I am hugely aware of how precious this time of being able to escape it all is, I am very aware that everything can change in just a second and that so often stuff does just that and then I flap in the wind for a while before finding my feet again. But so far, my feet have landed squarely on the ground, adaptions are made and life goes on in a new format.  I wish for us all that nothing regarding Steven's results change dramatically - well, unless of course its those numbers that head downwards

I have one of those little voices in my head that tells me that I need to start 'giving back' or paying forward.......... either way, I sense that sometime in the not too distant future, I will be involved in something along that line, not sure what - but for now, I am still mentally lying like a slug on that beach, enjoying the peace and quiet and sunshine.

Love and light
Annie

Waiting...........

Time for a sunset :)

Yesssssssssss!  The results were once again great :)  0.017%.

This has been an incredible five years,  I have felt the full range of emotions along the way - pure terror all the way to the daily joy of seeing that Steven is doing so incredibly well despite cml in his life.  I have learned so much, gained confidence enough to question those doctors even if and when they were intimidating;  learned that no matter what, when a test result is due, patience is just not an attainable feeling for me.  So many friends have enriched my life beyond measure....... some I got to know very well and all of you will always be a part of who I have become.  The support and encouragement over these years has been truly priceless and I am incredibly thankful to everyone that helped me through the years since that horrible day of diagnosis.

I have also come to the conclusion that its time for me to move on, to leave cml treatment up to Steven and to step into a new phase of my life.  Of course I will always keep an extra beady eye on Steven and cml and will no doubt still worry about his results, but its not the same as it was three years ago - or even last year.  I feel safe enough to let go those reigns and keep watch from more of a distance.  I am almost sure that not much will really be different, just that I need to find a new focus seeing that he is doing so well.  Life is pretty much cml free apart from the PCR tests he has.  How incredibly fortunate we are.

Now if something changes, you will hear the revving sounds from wherever you are!  Then I will start my cml motors again and climb back into the battlefield.  Lets hope that time never arrives.  So now this blog will probably only be updated with his results and if there is any news regarding Steven's cml directly.

It's really been a wonderful, incredible, sad, lonely, happy, joyful and amazing five and a bit years that I have poured my heart and soul into.

The end of something is most often the beginning of something else....... a sunset is an assurance that the day is done, that I cannot go back and re do anything and it gives me the encouragement to make the most of as many tomorrows as I have.

May your tomorrow be the very best it can be......

love and light
Annie
Steven's mom

Thursday

I just really, really need a good pcr result for Steven on Thursday..........

We forgot!

Still waiting for those PCR results........ and the most amazing thing happened.  We both forgot, totally forgot his doctors appointment on Tuesday!

It was quite something to find that I was smiling as I texted Steven to ask him about the appointment.... smiling!  I never ever would have thought that I could ever have totally forgotten about an appointment to get those results, but to be able to laugh about it - wow.

Now I hope this does not happen again, and I definitely don't think its generally a good thing to forget a doctors appointment - but under the circumstances, I know that it brings a lot of peace with it - forgetting this time felt gooooood!

I know better than to become complacent, to pretend that there is nothing to worry about.  I know that sometimes life just does not work out the way we want or need it too.  And with this in mind, I want to ask you all to visit with Dori and her family.  This family has shown such strength, such character and caring..... send them a message, a hug.

Life is so incredibly precious, so tenuous and worth living every single minute to the best of our ability.  I often wonder how I would live tomorrow if I could see into my future.   Maybe thats why we cannot see tomorrow.  Just live today the best way possible, this moment is all we really have.

Love and light
Annie

Waiting with happiness

The test is done and the waiting has begun.  First, due to the tornadoes in the area, Steven had to postpone his pcr test by a week, but now its done and the wait is officially here.

And I am not worried.  Maybe there is so much going on in my life that its just filled that 'cml worry' space for now, but I absolutely know that I really have no control over his results, so I am learning to ride that wave much more gently these days.  Maybe.  Hopefully.

Tonight was one of the best nights ever..... had both my girls here and am so extremely grateful for that. There really is so much good in the world.  Sometimes we look at only what is in our face and forget to look at the other good stuff.  Tonight is really good :)

And the wait for those pcr results will be as long as its going to be - no longer, no shorter, no matter what I do or think or feel.......

so for now I am just going to keep going one step at a time, relaxing and living life the best way possible with a huge smile and an enormous dollop of grateful.

love and light
Annie

And so its time again....

It's time to see what Leukie the Dragon is up to again.... The PCR kit is ordered and winging its way this way, or soon will be, for that appointment later this month.

My mind has been otherwise occupied these past couple of months but as the time gets closer for that test, I find that cml nudges its way to the forefront of my brain.  Steven looks and sounds great, but that does not stop this mama from really just wanting those test results to be in and great again.

Earlier this year I saw this as sidewalk art in San Diego and immediately thought  that this is what its like in a way - Leukie the Dragon always lurking, leering at us from somewhere.....but I must say that this rendition of him makes me smile.

love and light
Annie

Be sweet.....

And time goes by, everything on the leukemia front with Steven doing so much better..... its like someone threw oil on stormy water and ....... well, you get the picture.

Because my life was very tied into staying on top of, and in touch with everything leukemia, this leaves a fair sized hole in my mind.   Even though Steven's tests have been great for a long time now and I have slowly spent much less time being 'freaky' for the past few years already, I still find that I really have to make a sincere effort to fill my mind, to stimulate my brain, to move forward and know that it will all work out exactly the way its meant to.  I need to work hard at being creative, to enjoy things without the fear of that potentially 'coiled snake' waiting to turn my life upside down again.

So much of this past month I have thought of those who have lost someone they love....  To get up and move on has got to be so incredibly difficult.  At times its got to seem easier just to sit and not cope at all, to not get on with life, to literally just stop.  And that pain is endless.  How does one do it?  Especially those that have put their days and nights into a hands on situation of caring for someone, whose days were literally filled with that person.  That adjustment must be huge.  Beyond huge, as it covers every aspect of every day.  I don't believe that anyone can prepare fore a person dying, you cannot prepared for that hole in your day, the loss and the extra time on your hands....... no matter how much you know its going to happen, or hope that it wont.

One blog that I read really got me thinking about all this...  The 14 year old son passed away and from what it looks like, some family of mom are being critical of how she has dealt with his illness and how she still is.  Wow..... that really is beyond understanding.  She, and the rest of the family, are absolutely entitled to grieve in any way they want to without someone who has not walked their path, saying how they should.

So..... if you know anyone that has lost someone and is bending in the darkness, at a total loss about how to cope, or even dealing with it in a way you don't understand, please be kind to them, be sweet, fill a few minutes of their day with them, let them talk about the person that is no longer with them, ask them about the pain they felt and still feel.   Just never ever tell them how to grieve, how to feel or how to act while they are coping with this pain.

And be thankful for the days that you do have with those you love.  Always.

Love and light
Annie

Can it be 5 years already?

5 years today we heard the words that would change all of our worlds in more ways than we could have imagined, then and now.  Those words seemed to have challenged us.....  I remember Steven saying to me in the hospital that 'everyone dies, I am going to try not die from this."   

He has done so much more than just survive.  He, together with Laura, have flourished and lived their lives more fully than I see in most young couples.  Without Laura, I would not have been able to relax as much as I have over the years - even tonight she reassured me that she would 'report him' if she thought it necessary! What a lady :)

I am so incredibly proud of the young adults in this photograph... they are strong people, bound together by a love that wont break, bound by a goodness that is just beautiful.  Steven and Laura, thank you for letting me into your cml world, being patient and understanding of my 'freakiness', especially in the early years.  Lisa and Joleen - thanks for giving me the understanding to deal with it all while standing by and learning to deal with it yourselves.  You have all given me the strength and love to keep on going......I love you all more than I can say.

5 years.  So many lessons learned, so many people have come into my life.  Too many have left, leaving huge gaps but in the big picture I think we have all grown in ways that are so good and so solid.

Now....... on to the next 55 years!

love and light

Annie

Almost five years later.......:)

Have you ever sat and watched the most glorious sunrise or sunset....... one that makes you just sigh that deep sigh that plants a smile on your face and in your soul, makes your shoulders drop in utter relaxation and the smile lines around your eyes deepen?

Well, after feeling a bit like "Senor Frog" for a good while, we saw that sunrise....

Yes, Steven's results are in already.  Last time that wonderful number was 0.025% on the international scale.  This is a good number in relation to cml, its not a bad number at all in response to Gleevec and we were quite prepared to be at ease with things if he just hovered around at this number, or close.

But nooooo, not this time.  This time it's.... enter beautiful sunset/sunrise, place the happy smile...drumroll please...... There are NO numbers, his counts are too low to report as a number :)
How flippen amazing is this!!??

This time Steven's counts were only listed as 'weak positive' on both the old scale and the new International Scale of reading the cml cells.  This means that out of around a million of his cells that were tested, only a very few - yes, less than 10, came back with a sign of cml.  This is as close to totally undetectable as one can come.

This is something we have all been hoping for, waiting for, for almost five years now.  And yes, I am aware that they can bounce up again, and down again and go on like that driving me close to nuts as possible........ but for now - for now I smile deep inside and outside and the world is beautiful and life is just that extra bit better than best.

And with this news came a need to say a huge Thank You to so many that have endlessly held my hand, listened to my gripes and worries, felt my tensions and lived with my moods in the less than nice times.  Although these past years since Steven was diagnosed have been difficult and scary, they have, in retrospect, not been terrible.  Steven is alive and doing well, we are all getting on with our lives and we have all grown into better people because of the whole circumstance.

I know that I could not have got through these past five years without you.  Yes you.  And you and you too.  Every one of you have been there for me, for Steven.  With us.  You have held me up, pushed me along, led me and walked with me along the road to where I am today.  I think that if my cells were put under a microscope, there would be a little of each of you showing up in there, a part of what makes me whole and capable.

You come from all around the world with widely varying circumstances, but each with a good heart and a hand held out.  Thank you.  Thank you!

And so, with these wonderful results in hand, we head into the summer months of 2011 and year number six living with cml in one of us.  What a wonderful way to close off these cold winter months and start a new year.

And just as a funny thought....  just a few years ago, I would have been absolutely offended at any part of any of my kids being described as "weak positive" and I would have been horrified at any test result with so many zero's...  now I am soooooo happy!  Funny how things change.....gotta love it.  :) 


I wish smooth sailing on the oceans of life for everyone.
Love and light
Annie

Looking for full sunshine again....

Yup, its been a while since I last updated the blog....  Since we got back from the cruise, the weather has been really cold around here and a challenge to my state of mind...... oh for those lovely balmy days in the sunshine.  As I write this, the world outside is gently being covered in a white blanket of snow, once again.

And so, I guess, it is like the seasons passing by - this waiting for the pcr test first and then that seemingly endless wait for the results.  Yes, it has definitely become easier to deal with the time until those results come in, but its still a wait.  Its still a time when that river runs in the back of my mind a little more loudly, when my concentration is a bit more lacking and my focus all over the place.  It's not yet a settled time, its not a peaceful time nor will it ever be, I think.

But its a time that I have learned to treasure, to enjoy, as much as the days outside this wait time.  I do see the beauty in the days, I find the fun, the joy, the sadness and the new experiences in these days as much as in the other.  It's just a little bit different.

I have thought for a good while now that Steve's counts have something to do with his stress level..  These past couple of months, I believe, have been a whole lot less stressful for him and I am really inquisitive about these upcoming results. Wouldn't that be great if this really is the case and his counts go down.  I know what that does to my heart, my soul and my ability to see life in more shades of joy.

It's been almost 5 years already since Steven's diagnosis and hard to believe that life has not only moved forward but improved in so many ways.  Just the other day I was talking to a woman and in the conversation mentioned that Steven has leukemia.  Well, her eyes immediately shot wide open, she glanced quickly at him (despite having spoken to him earlier), and whispered deeply in horror 'him???'.  Steven was sitting not far away at all and I saw a small smile form at the edge of his mouth, as he carried on with what he was doing.  I counted my blessings with a smile as I quickly told her to look at how well he looked and how well he has been responding to treatment and it was interesting to see how she relaxed and started asking questions..... it was not long before she started sharing her cancer story about her sister.

She had not been able to talk about it for a long time with anyone as everyone thought that she was 'over' the terrifying times she had gone through with her sister.  Many people do not want to talk about cancer, they don't know how to talk about someone who has died from cancer and 'don't want to open wounds' by 'reminding' people of the tough times.  Sometimes people are even reticent to ask me about Steven's results.....  Don't be afraid to talk about cancer, don't be afraid it will hurt or remind someone of the pain.  Cancer is something that once its in your life, in any way or family member - its there.  No amount of talking about it will make it hurt more, but it sure might make it easier to deal with.  Even though Steven is doing so very well on Gleevec and right now everything is going along very well with him, I absolutely appreciate it when someone asks about him.....  I can only pretend to imagine how it must feel to someone who has lost someone to cancer..... Ask about them, talk about them, laugh and cry with the memories, care enough to take that sometimes scary and confusing step - talk about cancer and the people it changes - you can only help break the loneliness this disease brings with it.

So, even though we wait for the sunshine to break fully through those clouds with another set of great results, the view is still so good and beautiful and I am finding it easier to enjoy this time as the years go by....   This learning, this process of learning how to do things right, how to be there for people we don't even know, to just listen, to be, to just be everything we can be - what a process.

What a way to wait for wonderful results :)

Love and light
Annie

"Giving Anonymously" Appeal

This organization is wonderful and the people that work there are amazing...... even if you cannot help them out with this, please check them out and pass the word along.  There is often someone you want to help, but dont want your relationship cluttered up with financial issues.... use Giving Anonymously. 

Annie

Uniquely precious......

Last week it snowed a snow that our little town has not had in a long time - even more than the Christmas snow they had while we were away.  I don't like the cold, so the 7 inches we got in the front yard, together with the really really cold temps, set my teeth on edge... and then I heard it.  My camera was jumping up and down to get another shot at capturing a snowflake... and so we did.

A few days after that we left for our cruise from Ft Lauderdale, through the Panama Canal to San Diego and I honestly did not even think of cold weather, let alone snowflakes. (Apart from yours, Esther).

It was simply wonderful to be away, Steven was going to keep the shop for us, and he was and is doing very well still, as was everything else in our lives....  So I left with a clear and unleaden heart.  At night, long after everyone had deserted the top deck, I would walk around up there in the crisp, clear night talking to myself and the ocean and enjoying the total lack of people and human sounds.  The bows of the ship, Celebrity Constellation, parted the ocean waves almost effortlessly, creating a swishing, shooshing bow wave that  soothed my soul even further.  All of you were so often in my mind, especially during those lovely quiet walks and thoughts and wishes still swish around on those moonlit waters.

And then we came home again to reality in so many ways.  Tyler passed away soon after we got home and Steven's pcr test is due again next week and the hurt from others that are no longer here was still evident in many different ways in the emails and catch ups I did.

And so the Snowflake came to mind again.  That day I had a black piece of plastic lying outside to catch the snowflakes.  You see, sometimes snow falls in these beautifully shaped, unique flakes but it seems to me that much of the time the snow is just..... well, clumps of uninteresting ice pieces.  Sometimes they are little round balls, sometimes tiny toothpicks and sometimes a scrambled mess - almost indescribable..... but this day there were many perfect flakes floating down on our world. 

I dont think that many people actually look at what type of snow is falling...so I called Steven outside to get a closer look too.... It's like being in a different world when you see all those flakes gently landing on that black plastic.  Its quite incredible to think that something as beautiful and special as this snow flake was made and then survived the fall to earth to land right there at the tip of my lens.  I find myself becoming totally involved in hunting the next beauty and I even forget to be cold at times.

If the temperature changes just a very little bit, that beautiful flake would not form at all.  Just a degree or two makes a difference between the creation of something stunninly beautiful, or not.  I dont know what the temperature it has to be to create this perfection, but I do know that when the tiniest thing changes, that flake stops being.  Just stops.  If I breath too close to it or if I stand in the way that shelters it from the wind, it disappears in the blink of an eye hardly even leaving a tiny puddle.

And this got me thinking on life and just how tenuous it really is.  This leukemia, cml, is formed by something really small in the dna changing and messing up (no technical terms right now), just something so small creates all this mess in our lives.   I wonder just how small the change was that started the ultimate undoing of Tyler and Adrian and ...so many others too. 

I know that there probably is very little chance that we will be able to cure all cancer, or to stop it from getting out of control, and I know that sadly many many more people will not survive their cancers and other illnesses.  And this thought, pictured together with that short lived snowflake, makes it so clear just how important it is to let those you love know it.  Loud and clear.  It makes it clear just how important it is to live our lives 100% every day, to look for the joy, the beauty and the love in as many moments as possible.  All too soon something will change, or the change will tip us into something unstoppable where we cannot enjoy life as we now know it.

And like this snowflake that will now live forever as a photograph, the many people who are no longer with us, will keep living in our souls and in our memories as unforgettable and as beautiful as a once in a lifetime snowflake.  Each one of them uniquely precious forever...

Go hug someone - tell them you love them.  Call them, write them, txt or email them. 

love and light
Annie

A very sad start to the new year.......

Tyler passed away yesterday, the 6th January, 2011

This was not supposed to happen at all...... he was a handsome 44 years young, still newly married, by all accounts a really wonderful person; his wife Mandy is beautiful, vibrant and walked his walk right there with him.  He was supposed to have a full and good life, he was supposed to beat this leukemia.  He was supposed to live, dammit!

I have never met Tyler or Mandy but have followed their story since they first started their blog and because Tyler had the same leukemia as Steven, of course I wanted to find out as much as I could about how he, and also Mandy, dealt with the rocky roads.  Obviously for all the right reasons, I wanted Tyler to beat his cancer, but in addition to that, I wanted his survival to to be a 'win' for us all against cml.  I wanted him to beat it so that I could feel better, be more at ease and add to the hope I have for Steven's long life.  Selfish, yes, but  thats the way it is.

We had just returned back home from vacation when I read the news and it was literally like a kick in my stomach.  I kept going back to their blog to make sure it was true - and that photo of them both, so full of life, love and happiness greeted me every time and made the world a bit brighter, until the words below came into focus.

Tyler obviously touched so many people in his life and was clearly loved by a bunch of people, and he will be tremendously missed.  My heart breaks for all those who knew him and have now lost him.  It just does not seem right at all.

It's at times like this that I get really really angry, sad, scared and angry again all rolled up into one ball.  Obviously I don't feel the grief the same as those that knew and loved him, but his passing definitely has an effect on my life.  It makes it a bit rockier, makes it a bit more precious, makes my life a bit poorer and  at the same time it somehow enriches it.  And right now I feel very selfish in describing how Tyler's dying affects my life in the face of their hurt, but its true.  Even not knowing him at all, he has made an impact on my life and it has been a good impact.

I am deeply sorry that Tyler's life ended so soon and I send my deep and sincere condolences and love to Mandy and all his friends and family.

Tyler..... I hope you have that beautiful smile brightening your face and the twinkle in your eye lighting your way.

With love and deep sadness

Annie