Saturday, February 12, 2011

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

Wednesday, February 09, 2011

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