Saturday, December 27, 2008
This past year has made me more aware of so many things. These past few years since Steven was diagnosed with cml, have done this. It's hard to believe that in a mere two months and some change, we would have been on this cml road for three years already! It's amazing how many important things I have learned about life in such a short space of time. It's weird how emotional I have become - although I know it's probably got something to do with my age too.......but lets not go there now :) It's a good emotional though - it does not floor me, does not bring me down, but helps me keep the important things in life, in focus and is ok as long as the box of tissues is close by!
I want to let 2008 go with some really important thoughts and ideals to keep me going into the new year.....a year that I just insist is going to be a really great one.
Here is a video of a young lady recovering from her bone marrow transplant - quite an incredible lady and her family. Yup - I cried watching this. Tears of hope and sadness too that they had to go through this. But look at everything they have achieved! Michelle and her family is amazing. Anyone in her area - join the registry!http://www.youtube.com/watch?v=CGhAlICpU60.
And here is another trial for the cure of cml, the killing of the sleeper cells, and a talk by cml specialist, Dr Ravi Bhatia. Here he explains why he believes that cml is not cured by Gleevec, Nilotinib or Dasatinib. It's interesting
and so positive. It's just awesome to listen to these amazing people. These doctors and scientists who are working so hard to find a cure, or to figure out cml - they are hero's, my hero's!
And Adrian - If you have not read his blog - do so! He was an incredible inspiration to people all over the world - still is.... He changed things, big things and really made a difference in this world. Adrian's Army and his parents, Kay and Keith are keeping his work going - see if you can get involved in some way.
Lea has fought against cml hard and is now a year past transplant and went skiing this vacation! It's fantastic that she has shared her journey with everyone - it really gives me hope and there is absolutely nothing like reading such an incredible success story! Both her and Shane, another transplantee, hardly ever update their blogs anymore which is absolutely wonderful - no news is definitely good news in both cases and its so right that they get on with living their lives and have less and less to write about regarding cml. It's stories like these that have literally lit up my life this past year.
Little Bianca and her family had to adjust the celebrating of Christmas because of treatments and are in a small bump in the road right now, but they keep on sharing smiles and the good things in life - where do these people get the strength from?
And Dawn - oh boy, she is fighting so flipping hard right now. Go to her site - donate blood, get on the registry, send her and Mike and their families a message - I want so badly for her to be ok!
Oh there are too many that are not around to see this year come to an end, too many. But each one has left so many with so muc
h love and energy, the will to do something to change life for others and a new depth of character that can only come from a really deep worry and pain.
There are so many people that I watch and follow on their determined walk with cancer - and they have taught me so much. Somehow this past year seems more intense and filled with depth than the year before.
I wish for everyone that this coming year is one where we can all make a difference. Sometimes we think it has to be something big - but that's not the case. A note, a flower, a smile or just listening without interrupting can make all the difference in someone's life. Think of something and just go ahead and enjoy doing it! Be a light to or for someone.......... even if it is for just a minute...
In many ways I am happy to leave this year behind me, but then I think of those that won't be in the new year and I don't know if I am ready for another year yet, don't know that I am ready to let the year go and start a new one. But - there is no option, as we all know.........so.....
May this be a good year, a positive year, a year filed with an extra dose of love and warmth and the opportunity to make a difference somewhere, somehow.
And thanks, so many thanks......
love and light
Thursday, December 25, 2008
The best thing about Christmas for me is that it gives us another chance to get together, to let those close to us know that we love them and to do something special for others. And so it was again this year. Hours filled with hugs, smiles, caring and laughter. It's not in the gifts at all - its in the caring and the care taken and the light in the kids eyes and the magic.
It's in the love........it's in the magic of a tree all lit up in a darkened room, in the nail biting of the excited little girls as they waited for the gifts to be handed out.... It's in the wonder.
For me, Christmas is the end of the year in so many ways.....it's when I think about the year that is past, the so many good things that have happened, the special people and the incredible amount of love that has been spread around in another year... I think about the people that are struggling with the loss of their friends and family and those still struggling to hang in there - even they give so much love. It's just amazing how it sometimes seems that those hurting the most, those struggling the most or those that have lost the most seem to be able to comfort and deal out love in incredible doses.
And these days I find that I cry at everything! I cry at a good story, at a sad story, a happy ending, at the end of a good evening and sometimes just because..... Maybe I should just sit and howl it all out - think that feeling would go away? Hmmmmm
2009. What do I want for 2009? I don't know that I can answer that question right now. I want so much for so many, but how to put that all in words...... I have learned to be very careful about what I ask for so I think I will just let this one lay there for a while before I put it in actual words.
Health - may you all have the best possible health. And Dawn and Tyler - so many special, special wishes and hopes and thoughts heading your way.
Love and light
Wednesday, December 17, 2008
Bye Bye RoadrunnersUSA.com
Today was sort of sad in a way, but also the right thing and the right timing. Today I decided to let go the website I put together right after Steven was diagnosed. We did this fundraiser - somewhere around 11 000 miles from Tennessee to Alaska and back, to try to raise money for the Leukemia and Lymphoma Society. We had an incredible time, the people we met are still embedded deeply in my heart and its a trip I will never forget for so many reasons.
But, it's time to let the site go. Those very intense, terrifying days have passed and now my days are more like those beautiful colored pieces of glass one finds on the beach sometimes, with rounded edges and the sun making them glint. I am ok in letting this go now, but am putting it on this blog so that I have a record of what it looked like.
In no way was it a professional website but it was my first. And I guess the first of anything always holds a special place in one's heart - this one especially so.
Those were incredible days - terrifying, alive and so amazingly full of love, so intense, so aware and deep.. I wonder if there is a way to be so alive without some horrible diagnosis getting there first?
And once more, Thank You to everyone that was there for us in those days as well as these. Penny was such a part of that journey - I miss her. I have so many wonderful memories from that time... and a deep and wonderful gratitude.
Love and Light
oh well - only half of it will fit into the blog - but thats ok....it's enough to remind me :)
Saturday, December 13, 2008
When I looked outside this morning, everything was coated with a crispy white frost, making beautiful little colored sparkles all over the garden as the sun came around the corners and over the trees and lit them up.
Of course I grabbed my camera and headed outside. I wish I had discovered this passion for seeing things close up, many years ago...... I don't find it so easy to get my nose 6 inches off the ground in the middle of the lawn and hang on to any sort of dignity at all! Thank goodness for the fence around the yard, but there is one place people can see through a different fence and I saw one person kind of stutter on their brakes when she saw me stretched out on the frozen pathway at 8.30am. All day long I wondered if she thought I had fallen or if she chuckled at my craziness... ah well.
I got some really lovely photos - but what is really fascinating to me are the thoughts that waft through my brain as I try to get 'The One' perfect picture. Trying to get so close up is not always easy as the depth of field is very narrow - meaning that only very little stays in focus at a time. As I move the camera back and forwards in tiny increments, different parts of what I am looking at become either in clearer or fade into fuzziness.. sometimes creating a totally different picture from the previous one.
And I started thinking.........when we are so close to someone who is working hard at kicking cancer, or any other serious issue, in the teeth - so much else of life gets fuzzy and out of focus. It takes just a little adjustment to see a different part of the picture, to get a different take on the whole. And also in life, sometime standing back or moving in makes it all totally different. This is what makes it so difficult sometimes to really help someone going through tough times. None of us ever stand in exactly the same place as another while looking at the same thing - we all see it from at least a slightly different angle.
When I go for a wide shot with the camera, trying to get a whole leaf or blade of grass into the same photograph, the smaller things go unnoticed. Look at these crystals, look at how they are all made - each one is so precious, so special and so unique. I think of all the years when I never even thought about what frost looks like! When I looked at that lawn after seeing the pictures - it's all so different - its beautiful in a very different way. I think about the wonder of those crystals - see how they don't close on the top? In each crystal the circle at the top is incomplete! Why, I wonder. But for now, I am just enjoying being able to see something I had not before.
It's very much like this since cancer entered our lives. I have seen so many more aspects of life, what's important, what's not. I have learned to look deeper than just the surface of people, to see that everyone has a story that is filled with little, precious, incredible crystals, some in focus today, some in focus tomorrow..... I know this sounds all soppy but it's so true. I have met people who brighten my days just like the sunshine on those gems on the grass....and all of them have put some part of my big picture into focus at some time along the way
I read something yesterday and it's been playing through my mind....... "Does the person create the journey.... or does the journey create the person?" Interesting thought, I thought. :)
Today Steven worked with us again in the shop. It's really wonderful to have him hanging around for a good few hours on the weekend and interesting to see how fast he learns and just how much he does remember, even with the Gleevec. Today he said a few times that he did not know why he was so tired. He only arrived around lunchtime which was great 'cause I knew he had a relaxing sleep in and a lazy morning - always good for the soul. He had something to eat before he came, but also commented just before we closed at 5pm, that it was strange that he was not hungry yet.
Well. Yes. And no - I did not go into worry mode, but I have to admit that my antennae went up. Why would he be tired? Gleevec not working anymore? Why would he not be hungry? Spleen getting bigger again? Sigh - I know that the chances of this are probably very small and really nothing to worry about at all, but it does throw me back to those days when I did not notice this stuff, or did not think it was important. Pre cancer days. And I am much more aware these days.
Anyway - I don't want Steven to become too sensitive to every ache and pain and day of tiredness or such - but I did call him afterwards and mentioned that he should just not blow off these feelings, but keep tabs on them and tell me if they are still there next week. He assured me that he would. I know that I probably don't even need to mention it to him, but ............well, I am mama.
Anyway - here are the photos of today. And again - it's fascinating to me that natural things in nature are so close to my experiences these days...
love and light
Saturday, December 06, 2008
So many times I have fretted and literally wrung my hands, wondering why people who are doing well with cml don't write about it! Tell others the good news that life goes on, that things do fit well into that 'new normal' and put my mind at rest...... Well, now I see why. When things go well, life once again morphs into.......well, life.
I asked Steven just the other day how he is doing on the cml front and he says that he is just fine - no side effects, no cramping, no pains, no - nothing - just life as he wants to live it! How amazing is that? So, when he is doing so well, what do I have to say? I really have no news on the cml side of things at all.
It's a really good feeling to feel human again, to be able to breathe easier, not to have the level of worry of before. Reading so many other blogs has given me the knowledge that no matter what comes our way- we will deal with it, one way or another. It's interesting how easily I cry at the troubled times of some of those people I am following... Sadly, Erica passed away on December 4th after battling with leukemia. Dawn is having a really rough time of it lately too and Tyler is not yet quite off the bumpy road either. I hate this disease! I hate it.....
Being in the 'cml community' makes me so incredibly grateful for the life we have, the opportunities, the goals we can set and the dreams we can still dream. In many ways it makes me excited about life - its given me a deeper way of looking at life with a lot more appreciation of the little things too.
Being is such a good place right now, I find that my 'creative' side is wanting to come out and play again. It's been like this for a while now, but lately I have this need to do something fun, nice, exciting. I have my camera within reach at any given time and have even ordered that awesome new 21 megapixel Canon! Ooooh - this is really exciting! It will still be about 4 weeks before it arrives, but I am looking forward to its arrival in the same sort of way I looked forward to the birth of my kids :) Maybe I will even start selling some of my photos.... :)
I described it to someone this way - its like being a flower, all curled up for a good long while, then carefully letting one petal out to taste the sun - it reports back good stuff, then the next goes out and so on..........like this....
I know that all this good stuff can change in one simple blood test, but I cannot look at life like that anymore. I cannot sit and wait for the bad stuff - it might never come and what a shame all that wasted time would be! Besides, I have a good feeling that Steven would just hate for me to do that - I know he likes seeing me upbeat and excited about life - I am sure it assures him on a deep level that all is well with him too :)
I hope that my re-excitement about life shows someone else that life really does get better, that it can even out and be better than the old normal - well, in my circumstances, it did, and not a day goes by that I am not deeply grateful - for everything.
Here is another photo - this one is the nose of one of our doglets - and when I look at it it makes me think that I am sniffing the wind, and good things are out there...... I wish this for everyone.
love and light