Sunday, January 25, 2009

seeking sunshine......

On Tuesday we are leaving home for about 6 weeks or so.....  It's cold in Tennessee, Steven is doing well and there is more than enough sunshine in Baja to share with us and the camera's are itching to show what they can do with beaches, whales, sunshine and open roads again.  So, we are heading that way.

Steven has his appointment on Thursday and hopefully his PCR results will be in by then too.  He promised that he would call me and let me know - Yes, you did, Steven!  :)  Actually, I threatened to turn around and beat it out of him if he doesn't......  And then I won't be a happy chappy - especially looking at the weather channel for next week.

Anyway - we are almost packed up, have already closed the shop and are really keen to get going.  It was up to me to decide when to leave and I purposefully put the departure date before Steven's PCR results come in.  I thought I might call on Monday to find out if they are in but then that would defeat the point of leaving early.  I really need to stand back a bit.  I know that Steven is quite capable and with Laura right there with him, I know that all will be just fine!  So I won't be calling for the results, but will wait for Steven to call and let me know.

No -I don't have any nails left.  But fortunately they grow back quickly.

This week also brought a simply beautiful email from Hans, a newly diagnosed guy with cml.  That was really very special, Hans - thank you!   He has such a good attitude towards his cml journey and I wish him only good test results and few side effects and many, many smiles :)

Also please keep all positive thoughts going for Tyler and Mandy - his transplant is Tuesday afternoon!  I will be thinking of you both as we trundle down the road...... may it go smoothly and with as few potholes in the road as possible.  Hats off to Dad the Donor too  :)

If you want to follow our travels - feel free to visit the link on the right - or click here to go to the blog I have put together just for this adventure.

Love and light

Friday, January 23, 2009


Peace and quiet, cold winter sky, reflections, growth and death, hope and color, differences and same-ness...... all in a picture. Life.

Life is a song ... sing it.
Life is a game ... play it.
Life is a challenge ... meet it.
Life is a dream ... realize it.
Life is a sacrifice ... offer it.
Life is love ... enjoy it.

Monday, January 19, 2009

One more.......

Ok - so I am certifiably insane now - two hours in the snow and wind, crouching over a birdbath that had a dark jacket over it to get a bit of height and the contrast effect.  My fingers, nose, teeth and toes all froze.  But look what I got!  :)
It even has a design in the very center of the flake.  It was truly an awesome couple of hours and quite fascinating just where my mind goes when I am so involved in this stuff that one normally cannot see.
A lovely day.
Love and light

Saturday, January 17, 2009


Talk about determination and hope and making any of my problems absolutely minor.......... watch this youtube video - I cant help but tearing up when I do and then thinking about everything with a deeper commitment to be more grateful for what I have.......

And - along those lines... I know that every person, every situation is totally unique. Here are a few photos that I took of snowflakes earlier this week.  To me, its awesome to see how unique, special each and every one of them is.  Sadly, they start melting even before they hit the ground, or the tub of ice that I have prepared for them.  The snowflake lasts longer if it lands on ice and gives an interesting effect too...... I will post more sometime.

And when I see how incredibly fine and beautiful these individual flakes are, how far they have travelled and how they literally disappear in seconds, right in front of my eyes..... it makes me think of life.  The flakes I capture with the camera can always be looked at, wondered and admired and even mourned for disappearing - but it happened, I saw it, I admired it and wondered at its beauty.  It enriched my life, made me see things clearer and brought home to me just how delicate, precious and awesome life is.

People are like this - once we have known them, they will always be part of our lives, our souls and who we are.  Even if they die too young or way too soon - nothing can take their time away from you.  Even a stillborn baby affects that mom for life - it did for me.  And so a snowflake makes me think of people like Adrian and Dawn and so many others....... they were here, they impacted our lives, they got up!  (See video in the beginning of this post), they showed us how.  They are awesome.

They also make me think of people like Shane and Lea and Tyler and Hans and Steven and so many others that are also incredibly special, landing on the ice of life that is keeping them around longer.  

There is not a day that goes by that I am not incredibly grateful for the people in my life - the love and the light and the laughter and the life shown by so many people with issues way, way bigger than mine........... Thank you!

Love and light

Thursday, January 08, 2009

Goodbye Dawn....

This is Dawn.  A beautiful young lady, bright, energetic, loving and so incredibly full of life.  She made a difference in so many people over many years, and deeply so this past year.  Her blog is brimming over with people who's life she has changed in some way or another..... go and read it - it's truly humbling.

Today she died.   Leukemia was just too strong, too out of control and her body could just not take it any more.  

This breaks my heart to see yet another beautiful person taken by this disease. It sucks! I know there is nothing fair in life, nothing promised and nothing sure......but geez!  Look at her!  She fought so hard against leukemia, always with a smile and a glint in her eye.  I am so sad that she did not get better.  So sad.  My deepest condolences to all her family and friends - she is going to be sorely missed.

This also brings much closer to home the monster we are dealing with.  The fact that I have it so incredibly easy by comparison, what with Steven doing so well makes me tremendously grateful.  This is just one of the ripples that will forever flow from Dawn's life and affect mine.

Yesterday Steven's PCR kit arrived from Oregon and I noticed that my 'bitch factor' increased a fair bit as soon as that box landed on my desk.  I fight so hard against worrying, I don't want to worry and I know it changes nothing at all.  But it happens.  So I looked at it once more, and I am going to try not to give worry too much time this time.  Again.  

Last night when Steven came to pick up the kit, I found myself burbling out the instructions - again.  He gently said "I know, mom" and I was able to zip it up.  He does know, and he does it right every time, yet every time I find myself telling him again.  Aaaaaarggghhhh!  But, as I said to him today - one day he will have kids and then he will understand why I worry about things like I do.  He just looked at me with a smile in his eyes and said not to worry about it.  I cannot express to him enough my thanks that he deals with both the leukemia and me in such an incredible way..... 

He had his CBC today as well and I have to share them here.........they are almost perfect!
WBC 5.8  
LY 22.9
MO 6.6
GR 70.5
LY# 1.3
MO# 0.4
GR# 4.1
RBC 4.09
HGB 13.3
HCT 38.9
MCV 95.2
MCH 32.6
MCHC 34.3
RDW 13.4
PLT 255.0
MPV 6.3   This is the only one that is slightly low, and only very slightly at that.  It feels so good to type all these numbers and they are all good!  PCR numbers next, please!  :)

Steven also looked so relaxed, at ease, happy and well..............totally ok today!  And I realized again just how much my 'relaxedness' depends on him doing well.  I hope that he never feels that he must protect me from how he is feeling regarding the cml, and I know that he relaxes when I am relaxed too.

And I am,  really I am.  Even with the utter tragedy of the world losing Dawn today, I am relaxed with my life.  I know I cannot change this in his life and I cannot change the effects it has in mine.  The only thing I can change is how we deal with it...... Oh how I am now laughing!  I think if I go back three months and the three months before that - before each and every pcr test I type the same sort of stuff.  Ok - so this time I will try even harder.

And to show how confident I am - and no, I am NOT daring the Universe! - we have planned a vacation, leaving here at the end of January.  We are driving across country, we will stop off to visit my daughter Joleen and her husband at the Marine Base in Twentynine Palms in the California desert, and then down to Baja Sur....  We are hoping to spend a good month away this time - much of it on the beaches in tropical temperatures down in the south end of Baja.  The whales will be there, the turtles hatching, the sun will be shining and the beaches filled with shells.  My camera's are dancing already!

This is how I need to live my life.  If I sit and worry and not live for fear of what might happen, what would I be doing to my children?  What message would I be giving them?  Yes it hurts when leukemia claims another life and it grabs me by the throat and makes me angry and sad, but it also drills into me deeper the need to really live life as well as I can.  And in this way maybe I will instill the same determination into my three kids - whether they live to only 60 years old or all the way to 90!  May they see that if their 'old ma' can do this, they can too.

To Dawn's family.  The news today was devastating - I had so many hopes that Dawn would be 
up and about and flashing that smile around again.  I hope you know that the ripples she sent out have already affected my life and through that, the lives of others that I share my growth with.  Thank you.  I am deeply sad for you all.

Love and light

Sunday, January 04, 2009

Make the year a little brighter....

This picture made me think about how life is.  It's full of reflection, chaos in places and calm and quiet in others.  There are parts in sunshine and others in deep shadow.  There are reactions to actions that we often don't see without looking carefully and closely and so often this all happens in the short time it takes to throw a handful of stones - only seconds. And once the water calms down again, it will look all the same - but its not.  There are a few more heavy stones in this pond.   This is life.

Something really touched my heart and soul recently....... You know how Christmas and the new year makes us thankful for so much, pleased that we got through another year and also brings to mind the too many people that are no longer with us?  Well..... I know that the support boards and the people who walked with me through the first years of Steven's diagnosis literally saved my sanity.   A good few of them are firm friends now but even those that have moved on, like I have in so many ways, and with whom I don't have regular contact, well, they were and always will be a very big part of my life and who I am now.

So, what happens when you have lots and lots of contact, help, handholding, support from the boards and then the person you are caring for passes away?  Not only does one lose that person, but the support - your 'other life' - disappears too!  This is what happened recently...  I had emailed someone who had lost her husband to leukemia not too long ago and she mentioned that I was the first CML friend that she had heard from in ages!  That really made me sad.  Not angry at all - just sad. 

People that have lost someone, don't need to lose more than they already have, it won't upset them to hear from the people who were there before that person died, they want to hear that others still think of the person that has gone, they need the contact - they need to taper off from the contact like we all do in some way.   I know that if all that help, the support and the love shown to me from so many people just stopped, I know that that would be like losing even more.  The emptiness must be big enough without this loss too.

I don't know that I am saying it right - but I do think that maybe we should all just keep in contact with those that we got to know so well through common fear and hope, just that little bit longer, until they are ready to let go and move on.  Maybe??  

Maybe now is a good time to email someone of last year that lost someone - to wish them a gentle year and to let you know that you still think of them and the person they lost.  Email, call or write to someone that you have been in contact with before, someone that helped you or who you were there to support - tell them what it meant or means - let them know they still count, even if you don't have regular contact.

Sometimes it's not easy to talk to someone who has lost someone they love.  It's not easy to know what to say and we are scared of hurting them or making them cry.  But I don't think that letting them know something you remember, letting them know you still care, laughing at a common memory or even sharing a pain - remembering the person that has died, I don't think this would hurt that person.  I think not contacting would hurt more.   Not talking about the person that has died, makes them 'more gone' if thats possible and makes one more isolated in the pain of getting through the many 'firsts' of the new life without them.

Sadly, we all know someone that can do with this type of contact.... lets make this year a little brighter...

with love and light
and thanks - so many thanks!