Happy Place....

12 years ago my life shattered into a gazillion pieces.  Steven’s CML diagnosis took everything out of me and replaced the old me with terror, sorrow and emptiness.  Tears did not help, sleepless nights piled up one on top of the other and I could not hold a thought for more than a few seconds.  The words running through my mind were ‘my son is doing to die’.  I did not know how to do this.

And then I found a couple of groups online filled with others with CML.  At first I thought it was a typo when I read that some had been alive, and going strong, 10 and 12 years after diagnosis!  The Yahoo CML group and Jerry’s CML board fast became my new home.  I soaked up every word from every single post on those sites.  And I learned to breath again.

This morning I woke up with CML on my mind for the first time in literally years… but that thought came with a smile, peace and a deep, deep gratefulness to everyone who has walked this walk with me.  I have met, both online and in person, strong, determined and lovely people.  Mothers of kids with CML  who I felt literally took my by the hand when I needed it.  Twelve years after that shattering day, I can honestly say that life is good.  For me - and for Steven.

About four years ago I started reading about the benefits of turmeric/curcumin mixed with black pepper as an addition to his TKI.  So he started off taking about half a teaspoon of this mix, missing a good few days, but it still made an immediate difference in his PCR results.  Each time his PCR went up, he admitted to not taking the turmeric mix, and every time he started it again, his PCR came thundering down into PCRU.  he now takes the equivalent of 1 teaspoon of this mix every day - and his PCR has been PCRU for over a year now!  I am more than happy, more than utterly grateful.

I know this will and does not work for everyone, but ‘testing’ this over the years has made it crystal clear that it works for Steven.

These 12 years have gone so fast for me - so many things have changed, grown and improved and I am sure more is to come.  Its been amazing to see how this child of mine has grown into an amazing man, a working Electrical Engineer with an absolutely beautiful sense of humor.

And now Steven is with those who are surviving and thriving with CML and hopefully his manner of dealing with this, his ability to keep on with normal life,

will give others the hope I found so many years ago in reading words like this.

And so I find myself in a very happy place.

I cannot end this off without saying, once again, a deep heartfelt thank you to both Steven and Laura.  Thank you for trusting me enough to even try the turmeric mix, thank you for letting me in on how you are doing, just Thank You for so so much.  Also - my thanks go to everyone who helped get me to where we are with CML today.  Over the years I have lost contact with some people, but you are all still as precious to me as you ever were - thank you for being a big part of my ability to be ok, to be strong, for the encouragement, sharing and the many many laughs.

Love and Light
Annie
(Stevens Mom)

9 Years! SO Grateful!

Late last night it hit me that today is the 9 year anniversary of Steven's cml diagnosis.  The thought left me with so many feelings that I just sat quietly and soaked them all in for a while.

Happy that we can say "9 years!" with no tears or sadness at that thought.  Wonder that the years have passed so incredibly fast and it also feels like many lifetimes ago that my world fell apart.  Sad that way too many others have gone on from here and the pain that brings, along with the feeling that we should always be on our toes.

I am going to say here again that I know that Steven's cml is not about me, but that I write from how it affects me as his mom.  I write never presuming to come close to understanding in how many ways this has and is affecting his life, and his beautiful wife, Laura's life too.

That day, that week, will always be etched in my mind.  By the time the words were so cruelly and harshly spoken, we knew that something was not right, but hearing those words just tore my world apart.  I did not know how to breathe, let alone stand, talk or..... well, that roaring in my ears just would not stop.  And so I babbled away about stuff that I had know way of knowing.

When I heard those words I immediately wondered how I could make it right, how could I change this and then I quickly realized that there was no bandaid big enough to help this one.  It rendered me totally helpless, terrified and unable.  And then I looked straight at that son of mine sitting on that table in the doctors room and knew, KNEW that I could not stop functioning.  My mouth still babbled on endlessly and my eyes leaked, all the while trying so hard to give Steven what he needed.

I could not blow this off as if 'it was going to be ok'.  I did not know that.  I could not collapse totally because my kiddo needed me then.  Needed me to be all I could be.

And so I tried.  Steven drove home and we found ourselves laughing at something on the way home.  That was a weird moment.  And then he dropped me off, wanting to go home and be alone.  Oh I so wanted to be with him, but had to respect what he wanted....and I desperately needed to cry, long and hard.  Today I wanted (again) to ask him about that day, how he felt and what he did when he got home, but the words again choked up in my throat and I just could not.  Not yet.  Maybe never.

In a matter of days my youngest daughter told me she was joining the Marines, my older daughter told me she was going to make me a grandmother and my son was diagnosed with cancer.  Each of these was a huge occurrence, but I could only cope with one - the cancer diagnosis.  And so my girls sort of went on the back burner.  Yes, I participated, but I know that my heart, my attention was only partly with them.  I will forever be grateful for their understanding, patience and support even though they were going through huge life changing events as well.

During these past 9 years I have met the most incredible people, have made long lasting friendships with many who were and are in my position and also those with cml themselves - incredibly special people.  The support groups I joined helped keep me sane and so incredibly informed and in line.  I have so many 'thank you's", so much to be grateful for.

The relief and happiness of today, every day, also comes with sadness for those who are no longer here because of cml. There are too many to mention here, but you and your families are a part of who I am today.  Adrian Sudbury and his mum, Kay; Nick Pippen and his mom Diane - they, amongst many others enriched my life so much,  they still do. Lottie Duthlu, wow, I miss you!  Every person lost felt like a personal loss.  I am so incredibly fortunate...

And Laura.... I could not have done this without lovely Laura.  I knew she would watch out for Steven when I was not there, I knew she would take care of my child in a way that I could not.  She has been amazing through all this.  They were both so open to having me intensely involved in the cml process and this helped me let go a bit. Ok, so that took a good long time, but not because of them but rather because of me being, for a while, so incredibly scared that I was going to lose this child of mine.  I am so deeply thankful to both of them for this.

And so we have hit the 9 year mark.  Wow.

Steven, I am so incredibly proud of you for many many reasons including for how you have handled this from the very start.  I will never forget you holding me up while we were walking in the hospital and you said to me "Mom, everybody dies, but I am going to try to not die from this!"  You have said that you don't remember saying this, but it still brings me to tears.  You have done a stunning job of these years - may you be successful for the next 50 years at least!

I love you, my boy.

A huge big thank you to everyone who has walked this road with us - you are all part of my life in such deep meaningful ways.  It has been quite a ride so far..... scary, exhilarating, stunning, beautiful and totally amazing.....

Love and light
Annie
Steven's mom

8 years!

Its been a YEAR since I last wrote here?  Wow....

That's SO good in many ways - it means that there is not much to report regarding CML - and that is really really great.

It's now eight years since we first heard those terrifying words - Steven has leukemia!  I will never forget that day, the total terror, the numbness, forced smiles as well as nervous laughter mixed in, but mainly pure unadulterated fear.  I cannot imagine what it was like for him, but I know that it felt as if my life was over.  It was singularly the most frightening thing I have ever experienced.

I have watched as Steven has grown from the young man he was back then to the strong, confident and competent man he is today;  I have watched how Laura has been wonderful in supporting him and how they have taken this in their stride as the years tick on by..... it's been beautiful!

Eight years ago today, I could not think of eight minutes ahead, let alone eight years - how incredibly fortunate we all are to be able to look back and to also know that we can look forward without those feelings of what feels like a lifetime ago.

Steven and Laura carry on with life in a tremendously normal way that is wonderful to see.  Absorbing CML into their lives has gone smoothly and even though those PCR tests keep coming, CML is sort of way down the list of 'big things' to deal with.

The PCR tests have jumped up and down, between weak positive to 0.013 which seems to be the norm for Steven and which does not do much to my heart rate these days.  Each time I see those results, I utter a 'thank you' to the heavens and hope that next time is just as good, if not better.  So far so good.

So much has happened in this last year, that I have not had the time to fully concentrate on CML even though I am still so very aware that this is still a serious situation that needs watching.  Its wonderful to see Steven and not think of leukemia at the same time.... weeks go by with no thoughts of it.

Today I was thinking how different people respond to cancer. Some can get on with life, only paying it attention with those PCR appointments arrive while other's lives change to incorporate CML as a daily part of their lives in the form of fundraising and teaching and helping. (Some unfortunately don't have a choice as they deal with horrible side effects and non-responses to meds) I think that both ways are absolutely perfect and my never ending thanks go to those that do the latter - like Greg and everyone at the National CML Society and others that fundraise and keep the awareness of cancer in the in the headlines

I am really happy that Steven has chosen to put 'normal life' first and treat CML as a fact to deal with while just getting on with it.  It's good to see my 'kid' not involved with cancer all the time.  Is that selfish?  It's a thought that has been bouncing around my mind for quite a while now.

Here is the label from Steven's Gleevec..... its frightening just how much the cost of this medication has gone up in eight years.  When he started on it, it was just above $4K a month...

And so..... maybe it will be another year before I write here again.  I hope it is, which will again mean 'no news'!

Love and Light to you all - and hopes that your lives are all on a smooth road.  May we all stand strong and cast long shadows :)

Annie - Steven's mom

ps - if you are not a bone marrow donor - join now!  And donate blood too - its wonderful just how many will be helped by a blood donation, and what better thing to do with your life than to help someone else live!

7 years....

For some reason I have had a bit of problem writing about this milestone.  There is so much I feel but somehow its not flowing when I write.  But..... here goes.  I am going to give it a try.

6th March was the seven year mark from the day that we officially heard what Steven's diagnosis was.  For a couple of weeks before that, we knew that something was terribly wrong, that it was some kind of cancer, but did not know which one.

I remember so well being absolutely terrified.  Leukemia to me was a death sentence.  My maternal grandmother had died from it and in the world I lived in there, anyone who had it, had limited time.  

I remember ripping apart a rose bush with my bare hands, I remember so well that day at the hospital not knowing how to be, how to work with this and what on earth to say to my kid!  I wondered how to even think that my eldest was going to die, let alone talk to him about it.

But here we are 7 years and 4 days later, with great PCR test results, a young man doing very well and getting on with his life.  How grateful am I?  Sheesh - there is no number to quantify that.  I am grateful way beyond any possible measure and always will be.

Just last week there was an article about Adrian from the UK who, before he died, made an incredible effort to change things in the UK so that more people would get on the Bone Marrow Registry.  Click here to read the article.  This young man really did change how a very important part of the world works - he changed things on a big scale as well as in each and every one of us who were in contact with him or read his story.

When I saw Adrian's photo in this article, the tears flowed freely.  I am so sad that he no longer here, that he died, that his parents and family and friends will always have a hole in their lives.  And there are so many more that have not responded well to treatment as Steven is.  And my insides just quake at the thought that it could so easily be me that only had the photos of my kid to look at.

It was interesting this past weekend when I did a photo-shoot of a wedding that Steven and Laura were part of the ceremony.  I found my camera hunting them both down, especially the times when they stood together, when the smiles flowed or the gentleness between them showed...... the times when the proof was right there in my face that life was normal for him.  It was good.  

Editing the photos came with some sniffles.  I wanted to text them both so many times to tell them how grateful I am, how highly I think of both of them and ...........  Well, I want to somehow convey how incredibly glad I am that Steven is not only responding well, but that he takes this disease so seriously, that he takes his meds properly, that Laura is so supportive and keeps life normal, that they are moving with their lives despite the cancer.  I want to tell them that, but I did not.  Its as if I would be injecting cancer into a part of their life that it does not deserve to be.  

I sincerely hope that huge swaths of their lives are totally free of even the thought of this leukemia and even sometimes feel as if I am silly for holding on to my thoughts and sometimes fears, despite the obvious fact that they are doing so well in dealing with it.

And so..... 7 years.  Its come around so fast and yet it really has been a whole lifetime for me.  My life is definitely divided into before and after cancer times.  

Its been an incredible 7 years dealing with CML, not much of it easy, not much of it relaxed but like a fine wine maturing over time.  Again, I am only talking about my feelings, I cannot talk for how it was and is for Steven.  

The absolutely most important thing that helped me through these years, was the support groups I joined soon after his diagnosis and others that emailed and called me.  Without everyone that walked the walk with me, people I met and never will, I could not have done this.  So if you are one of them and are reading this - THANK YOU!

These days I don't get as uptight any more around test time and the last one I even forgot about!  It's become part of life, part of the routine of what needs to get done.  Again, just how can one measure how grateful I am for this........?

Immeasurably grateful.

And now on to the next 7 and the next and the next and the next...

Steven and Laura - I am so grateful for both of you for the way you deal with this CML... I am so grateful that you share it with me and love you both tremendously.

love and light

Annie

Another one :)

And so the days and weeks tick tocked by and I was surprised at how 'normal' this waiting has become.  I find my mind touching on CML every now and again, and as the test result time comes closer, I look for reasons that it might be higher again this time.

But no - this time it was, once again, a WEAK POSITIVE! Another rainbow in our lives :)

Yeah!

And so now we go back into the 'cruising time' with no tests looming, no results - at least not for another month or two.

After close to 7 years since Steven was diagnosed, I am truly grateful to be in this place that is un-freaky, this almost normal stage and hope with all my heart that it keeps on like this.

One happy mama these days :)

Annie
Steven's mom

Yesssssss!

I don't think there has ever been a time in my life when the words 'weak positive' have sounded so wonderful.  Yep, thats the latest PCR result - WEAK POSITIVE!

And that's the only thing that is weak about it all - the wording.  It is such a strong positive in our lives, it allows life to go on, allows for the gray hairs to grow slower, the smiles to be wider and the dreams much deeper.

There are way too many people that I have met along this journey of ours that are no longer here......  And I never forget to feel so grateful that my story is different, that Steven is still here, still doing well and still living his life in a wonderful way.  I am only too aware that anything can go wrong at any time, and not only with CML.  The CML has made me more aware of the fine line we all walk, how precious our lives are, its made me more aware that for whatever time we are here, we have to make the very best of it for as long as possible.

That word "anniversary" always brings the feeling of celebration with it, and most often that is exactly what it is.  But in so many cases, that word just does not sit well with me, particularly when remembering people who are not here any more.  I find that saying something like "it's the anniversary of so-and-so's passing", well, it feels as if there should be another word for it, a word other than one that is also used to celebrate birthdays, weddings and so on.

Adrian, Nick, Tyler, Penny, Michelle, Erica and so many others - you all sit in my mind and soul, in my thoughts and sad days... you remind me to live, to appreciate every day.  Diane, Yanni, Hans, Mandy, Matt, Debs and also so many others who are still here, fighting, dealing with CML - you all remind me too to be thankful, to enjoy, to know that life can be as normal as possible with this disease in Steven.  All of you are a part of me, like shadows, in this beautiful place called life.  Thank you!

And mostly, Steven..... you remind me, you teach me, you show me so many things that you are not even aware of.  I admire you, I emulate your attitude to this disease and mostly..... I love you!

Back to square one...... plus

Its not the first time that there has been a bump up in Steven's counts.  Its now doubt, not the last time, but that really does not help much to calm the niggle deep inside.

His PCR results have been a little higher before - this time its 0.14%.  But last time it was "too low for a number".  

This is like being a puppet on a string.  Someone or something else yanks those strings and there I go all out of sync again.  I am really interested in seeing this result, though.  I have this very strong feeling that stress has a lot to do with these numbers, and although there has not been stress in Steven's life, not in the horrible sense, but there have been some changes.  All good changes, but all changes come with some kind, some level of stress.  Hopefully by the next PCR, all will have settled down again.  My heart too.

No matter what, even though (and this sounds more dramatic than I mean it to be) the road looks cloudy sometimes, that road still needs to be travelled.  And we will.  Steven is doing a great job of moving forward in big leaps and bounds with his life - I am SO proud of him!

love and light

Annie

Lovely little box.....

So today it happened again - it has not happened in a long time and it probably has more to do with my state of mind than with the status of disease in Steven.

His PCR kit arrived, all ready for the next test.  I opened it and put in in the refrigerator to cool, as directed and then just as I was closing the door, it really struck me.....

There, amongst normal things of life - water, yogurt, chocolates, etc - there was this Biohazard container!

It really made me stop, made me think and for just a minute my insides turned to jelly all over again and my heartbeat picked up and I felt just a tad weepy.  This is the new normal, this is what even I as mom has got used to.  This happens as regularly as clockwork and with as about as little fanfare as the regular tick tocking of the clock.

But today it grabbed and shook me - just  little.  My son gets Biohazard containers to fill?  Sheesh.

And then what hit me even harder was the wonder.  The wonder of just how fortunate we all are.  That this, this little biohazard box, the waiting of hopefully yet another good test result after over 6 years of beautiful numbers...... this is "all" we need to deal with.

Wow!

I think so often of those dealing with horrendous side effects, those whose families are torn apart by the loss of those that don't have the fortune of getting these little biohazard boxes or the tests any more...... I think of those dealing with this horrible disease returning time after time, ripping away any chance of real peace of mind even in the good days.

And I sang.  I literally sang the rest of the day away.  And from now on I will welcome this little box each time it sits in that refrigerator, reminding me how incredibly fortunate we are to have Steven doing so well,  how incredible fortunate we are that my son, a brother, husband, nephew and grandson, still can have this test done, how incredibly lucky I am to have an amazing young man doing so wonderfully on all fronts in his managing of this cancer.

I love you, little box :)

Love, light and song.....
Annie

Grateful all over again!

Before Glivec was launched world-wide in 2001, there was hardly any hope for leukaemia patients.

A Texas-based leukaemia specialist, stated recently: “Before the year 2000, when we saw patients with chronic myeloid leukaemia, we told them that they had a very bad disease, and their course was fatal, their prognosis was poor with a median survival of maybe three to six years ... Today when I see patients with CML, I tell them that the disease is an indolent leukaemia with an excellent prognosis, they will usually live their functional life span provided they take an oral medicine, Gleevec (known as Glivec outside the US), for the rest of their lives.”

I read this (above) earlier today and just sat for a moment in pure thankfulness that Steven is responding so well to Gleevec and that he has the benefit of the progress in these medications.

Wow, I feel really really fortunate.

love and light

Annie

More hope!

So many things seem out of whack in life, and yet there is so much hope, so many new beginnings, so many people doing wonderful things, that I find it absolutely necessary to concentrate on the good things - like this nest full of Robin's eggs.  It's hope, new beginnings and just beautiful.

And that brings me to the article in the link I have pasted below, about yet more hope in the fight agains CML.  One day there will be yet another wonderful breakthough in the treatment of this disease.

Here is the website link: http://www.dailyrx.com/news-article/chronic-myeloid-leukemia-may-be-stopped-combo-therapy-18412.html

"Since the advent of targeted therapies, chronic myeloid leukemia (CML) has become easier to treat. And while the drugs usually put people into remission, the disease can return with full fury.

Using a combination of Gleevec (imatinib) and another targeted therapy, researchers have discovered a way to halt CML in mice. If this work translates to humans, CML may be wiped out totally."   

Whooo hooooooo!  Read more here...  http://www.dailyrx.com/news-article/chronic-myeloid-leukemia-may-be-stopped-combo-therapy-18412.html


Chronic Myelogenous Leukemia affects 20,000 people in the United States, but about 4,500 are newly diagnosed each year. It is the result of a genetic mutation that causes white blood cell production to increase out of control.

At first, during the chronic phase, the body produces too many white blood cells. If untreated, it progresses to the accelerated and then blast phases, where the production of immature, non-functioning white cells overwhelms the body, leaving patients susceptible to infection, anemia, and death. The chronic phase may be asymptomatic, with diagnosis being made from a routine blood test. Symptoms of the accelerated phase include night sweats, fatigue, easy bruising, fever, and infections. 

Treatment is with drugs called tyrosine kinase inhibitors (Gleevec, Sprycel, Tasigna), and recent statistics show an 89% five year survival rate from their use.

It feels so good to have people working on this disease, working on getting rid of it.

May it happen soon.

love and light

Annie

Penny on my mind....

For some reason Penny has been on my mind all day long.

Maybe it has something to do with the rose bush that I trimmed barehanded right after Steven's diagnosis that is now budding, or whether I think of her each year when those roses bloom - but whatever the reason, Penny is dancing in my mind today.

I miss you, lady.

Here's a flower for you.

Love and Light
Annie

Can it be 6 years?

Yes........ 6 years ago my world was crumbling, it was incredibly scary - no, terrifying, to say the very least.  And that was just me.  Six years ago, Steven had to tell the lovely Laura that their lives had changed, six years ago I tore apart a rose bush with bare hands.

Its been a very steep climb emotionally at times, pretty much a lonely road with me being held up, held together largely by people I had not met - the online support team that kept me going.  Fortunately, or unfortunately, none of my family or friends could truly understand how I felt, how I coped or did not cope.  As much as they tried, and I treasured them being there for me - I am incredibly grateful that they could not understand, as this meant they were not dealing with a cancer diagnosis in their child.

Its been a long six years, but here we are with Steven doing fantastically, living a life closer to 'normal' than many people with lessor issues.  His PCR results are great, his side effects minimal and his attitude just fantastic!

To all those who walked these years with me in any form, thank you.  Thank you from the bottom of my heart.  Whether we are still in contact or not, you will always be part of who I have become, part of my strengths and I will always treasure you all tremendously for this, especially you moms - I carry you with me daily.

And Steven.... well, my boy, I love how you have dealt with your life despite, or because of, CML.  I love how you seem to take it all in your stride with very little drama and a lack of impatience at me and my occasional freaky day around it;  I love how you have taught people to treat you normally, and that you don't shy away from this part of you life.  I am SO proud of you!

Laura, you give me the ability to step back, to relax a bit about the leukemia and get on with my life.  Your taking Steven's CML in your stride too and keeping a beady eye on him means more to me than I think you know.  Both of you are really are an inspiration, a great example of dealing with the big stuff in life in an incredibly admirable manner.  Thank you, thank you from the bottom of my heart.

One thing that I have realized over these years is that as long as my kids - all four of them, and all my wonderful grand kids are fine, then I am fine.

May the next 6 years filled with peace, beauty and strength.....

Love and Light
Annie

SO much good news!

And so the weeks and days tick-tocked on by and Thursday rolled around with really good results: weak positive :)

So much has been going on that it really was a short-lived celebration time - minutes, initially.  But as the days have rolled on by, I find myself smiling and just knowing that its ok, its ok again for another while.  I feel so deeply fortunate, so lucky, happy and grateful that Steven is doing so well with his treatment.  The side effects on Gleevec seem to be totally manageable for him - yet another reason for a big wide smile.

And so, I feel light again.

And, on another note.... the day after Steven's great results, I became a US Citizen!  What a wonderful, proud, happy and grateful day that was too.....:)   Here is me (in red) being sworn in... and now a Citizen!  It feels sooo good to belong, to belong here on this deeper level.  What a wonderful week this was.

Love and light and laughter - Annie

Waiting again..

Sometimes my gut still clenches up like this dried up leaf when we are in the waiting phase.  Sometimes my heart squeezes tight when I think of others waiting for these results knowing that it probably wont be good, and then I break into a fine sweat, a lady-like one!, just thinking that I don't ever want to be in that position!

Steven looks great and seems great - not too long now, just a week or two, and we will once again know that he is doing great.  Please.

Love and light and hopes - Annie

Open Door time

The standard 'Happy New Year' has been floating around my mind these past few days, for more than the obvious reasons.  Obviously we want to wish each other the best for the new year and obviously one cant go into too much detail with each greeting, but I really do think that it should be more tailored at times.

I could not wish someone who has lost a child a happy new year.  That greeting should be more along the lines of  wishing them a peaceful year, or a gentle year, or something along those lines.  I have been called nuts before, and this is just my opinion.

Today as I took down my Christmas Tree, I had the lights on it burning for the time it took to get all the decorations back in their box.  I took each of those little gifts down and thought of the person it represents and sent them wishes for the year ahead.  So if you feel a little thought, a little smile - it came from my tree :)  Yeah - nuts.

Anyway - here's wishing you a year with all the love and peace, joy and gentle times, all the laughter and hugs you can handle...... a year where you give and get compassion and understanding, a year where you just know that you are loved.

So yes, the door to another year is open - wide open.  For some it will be a breeze, for others level walking and for some it will be an uphill slog.  But it's an open door that we all have to go through.

I wish for you...... a good wish.

love and light
Annie

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