Living With CML: September 2008

Tuesday, September 30, 2008

Making ripples........

Oh so much has been going through my mind and yet so little...... I know - that sounds weird but it's so true too. We were traveling for only three weeks this time, but the beauty we saw was simply amazing. The man-made at Mt Rushmore, the absolute awe in Yellowstone National Park, the ongoing amazement over the Canadian Rockies both ways and those Northern Lights!

I have come to the conclusion that all the beauty in this world is not only there to balance out the stuff that is not so good, but it also really puts everything into perspective for me. There is no way I can stand at the edge of a geyser in the caldera of a living volcano, watching and listening to it boil and feel that I have any sort of control in the big scheme of life. Driving through the Canadian Rockies, through those totally awesome mountains topped with glaciers hundreds of years old, with rivers that will flow with melted snow and ice whether I am there or not - well, this all helps put everything into perspective. I think.

While driving the rv along many long and beautiful roads, my mind wandered over many topics and ideas, wishes and dreams. One was why life is not fair. I played with that one for a goodly while until it struck me (again) that life is neither fair nor unfair..... it just is. I toyed with the idea that if we all had life our way, wanting no pain or suffering, bearing no losses of loved ones and having almost everything we felt was 'fair'.........well, maybe then we would all be stagnant. Maybe then we would not appreciate what we have or who we have in our lives. I know life is not as simple as this, but when I am out there, standing in the waters of a river in the middle of nowhere, surrounded by unending and majestic mountains - well, it all seems terribly simple and basic. And then we get home again. This is why I surround myself with photos of these beautiful places.

The mortality of myself and those that are firmly implanted in my heart, make me think seriously about what is important in life and what is not. And again, when think about those deep blue pools of boiling water in Yellowstone, the towering mountains and especially those lights flitting across the sky...... I know, I KNOW that there is nothing as important in life as letting those that I love, know that I love them. There is nothing as important as giving life everything I can and enjoying the awe of what I can see and the awe of what I can feel.

And now we are home again and very busy again which is totally amazing. So many people waited with their sick computers, for us to come home and then descended like hungry vultures. Frank even put in two new workstations, for a total of 8, which have been full almost all day, every day. But I have still had time to sort through the photos of these lovely places we went and even started sorting the photos of the last trips. I have hundreds of photos stapled to the walls of the shop and playing on computer screens, reminding me that there is always something bigger and more wonderful than any worry I have, that it will all go on, despite what is happening in my life.

And now it's time to start getting the blood and marrow drive on the road. I met with Amber from Blood Assurance today - she has been so helpful and encouraging, what a lovely lady. She brought me flyers that they had printed up for the drive and some other useful information too. She also told me that her husband was recently identified as a matching marrow donor for a patient and just a few weeks ago went through the donation process. Another hero!

I am hoping that he will share his thoughts on being a donor with us all on this blog. I was humbled by the tears in Amber's eyes as she described the process that he went through to save a stranger's life. These people that donate, whether they are a sibling, a stranger or a friend - they are all absolute hero's in my eyes. I also think that the more people can hear about their good experiences and how relatively easy and safe it is to save someone's life, I really believe that it could make a difference in the number on the marrow registry.

Just another thing. My main drive has been to get the numbers up on the marrow registry, but recently I have been reading a few new blogs and it finally sunk in just how important it is to donate blood too. I never realized how often people needed platelets after a transplant to 'pick them up' to give them strength and, well, to keep them alive and going! So now I am pushing the blood donation side just as hard. It's life. It's truly life in the truest sense. For so many people in so many situations.

The fact that I have been so incredibly blessed to be able to see the amazing sights I have seen kinda gives me a responsibility to .......well, yes...... pay forward. To give back to a life that is so wonderfully good to me. The blood and marrow drive is one way I can do this, it is one way that I can take one step on the road that Adrian carved out........

If any of you are nearby, please join in on the 25th and donate blood, sign up on the marrow registry or just come and share your story. We need to hear the transplant stories, need to meet the hero's who made them possible. We need to make this part of life known and to let as many people know that giving life is possible with a relatively easy process.

Steven's pcr is to be drawn again on the 9th Oct and the wait starts again. He looks great and, well, I am just simply so proud of how he is handling all of this. I have handled it by writing this blog and meeting incredible people.

Thank you, thank you

love and light

Annie

This is what I want to do - no, no - not to swim in icy glacier water, but to make ripples in life. Lovely, gentle ripples and maybe they will turn into waves somewhere down the road.

Saturday, September 20, 2008

Light the Night!

We have been back home for a week now and it has gone so fast and its been good in so many ways. There have been many times when I have heard those cogs in my brain frantically cranking to get up to speed again, to dredge the things I know that I know, to the forefront again and get back to real life and the things that need to be done.

Going through our mail that Steven collected while we were gone, I noticed that the Light the Night walk was tonight! The first year after Steven's diagnosis, we were out of town on that fundraiser to Alaska, the second year I was angry about it all and this year - well this year I just wanted to walk. Steven had made other plans and after the initial "oh what a pity" thought, it hit me how right this is...... we will walk in celebration of his ability to live his life to the fullest, to enjoy and not be tied down to leukemia in any way.

What an experience. We had collected a few hundred dollars in the shop over the last few months and this was a good time to hand that over to the fight against this disease and we got a Light the Night t-shirt each to wear for the walk. So I promptly hauled out my permanent marker sharpie and started writing names of people involved in cancer all over that shirt! You should have seen the looks on people's faces. I then did some fancy handwork and out from under the new written on t-shirt came my ordinary shirt and I was ready to walk.

And then we collected our balloons. Together we carried four. The red balloons are for the supporters to carry, the white ones for the survivors and the gold balloons are in memory of someone we loved that did not survive this disease. We carried three red balloons and a goldie. Frank carried his one for Steven, I carried one red balloon in honor of Steven, one red onein honor of everyone I know dealing with leukemia - caregivers and fighters, with Cam and Cora at the top of that list and a beautiful gold balloon in memory of Adrian on behalf of Kay, Keith, Carrie and family. Yup, I wrote on the balloons too.

The walk was held in downtown Chattanooga, right next to the Tennessee River at Coolidge Park. It was beautiful there, with the sun setting over the river, highlighting the ripples on the river and lighting up the soft green grass of the park. The park was full of people playing ball, throwing frizbee, listening to music, biking and just ambling around. Then as the time went by everyone headed towards the Leukemia Light the Night Tents where the different color balloons were being blown up. The colors all around were lovely and it was awesome to see that most people were smiling, kind, gentle and friendly. It was quiet, not hushed as if something was wrong, just quiet in a way that said that everyone was on the same page and respectful of the very many feelings that were rushing through everyone and all at peace with being there.
The lady from the local chapter of the LLS gave a beautiful speech and four candles were lit in honor of those fighting this fight and those that have gone on ahead. It really was beautiful and I want to contact her to ask her for a copy of that speech. Then the walk started. One very energetic and lively lady with a beautiful smile and a determined gait, led the way out of the park, on to the street and up to the first bridge.

I don't know that I can explain the feeling of looking in front of me and over my shoulder and seeing a sea of balloons both ways and knowing that every one holding those balloons 'got it'. They knew about the fight, from which ever angle they had to deal with blood cancer - they understood the scared's, the fears the hopes, the happies and they all seemed to know that it was ok to smile, to laugh and to live to the fullest too. So, we swarmed over that bridge watching the last of the sun setting as some motor boats delivered even more ripples. Some people passing by, not involved in the walk, looked at us all with puzzlement, others were explaining to their kids what this was all about but mostly none of them made eye contact and they carried that certain type of hush that says that they, thankfully, are not dealing with cancer in their lives! Walking in a beautifully large group of supporters and survivors it was lovely to see so many that are not affected by cancer.

We trundled off the first bridge, through a little bit of downtown, nicely protected by the firmly raised hand of the traffic cops, down a lovely steep hill and on to the second bridge headed back to the park. I was stuck by the number of young people walking and by the respect shown and the understanding and gentle arm touches amongst everyone as they passed by. I walked with my balloons fluttering above me, and hoped so hard that even our small contribution, show of support to others, hoped that this would be at least one little drop in the ocean towards a cure.

As I walked I thought of all the love and caring that I have been shown over these last couple of years, of the friendships that have formed, the hope shared, the heartbreaks and the joy in good numbers. How absolutely rich my life is!

Watching hundreds of people walking over the bridges with balloons with lights in them was very emotional and totally beautiful. There was an old man that walked alone with a white balloon. He did not seem to want to walk with anyone and hummed with a lovely smile as he walked, seemingly happy in his own space. Then there was the family with the kid, still bald and with a t-shirt that said 'Survivor!' on it - he skipped almost the whole way with a beautiful smile and bright sparkly eyes! Even the little kids were well behaved - there was no whining no crying - no matter how young they were. Again, the number of people that seemed to be in their twenties, was quite amazing - I think they made the biggest group.

And then we wound our back off the bridge, and back into the park, through the row of luminaries that had been placed along the last part of the path. I had put one up for Steven and one for Adrian. Just seeing those lit candles got the tears running. People, me included, took many pictures and we all took group pictures of others so that their group would be complete in the photos and memories.
I did not want to leave there, I wanted to hang around until the last person had left and beyond - it was as if there was a little bit of everyone's soul there...........strange. But off we ambled and then I spied a fountain. Yup - water. And we headed that way to capture this lit up fountain that was just beautiful in the night light. It's one of those fountains that you can walk around in and cool off or just enjoy, and right then two little kids did just that! They twirled and jumped and laughed and kicked water in stark silloutte against the dancing water and gave us such a beautiful, innocent and hopeful end to one truly amazing evening.
Here are a good many photos - if I left anyone off my t-shirt, you were in my heart too.

love and light
Annie

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