Friday, May 30, 2008

Still here....

How many times have any of us sat on that fence, looking ahead at a world all out of focus? And how often have we thought there is no one that cares......... there's always someone.

love and light


Tuesday, May 27, 2008

Running deep..

They are just so right together! Love little Buzz trying to get in on the photo from his perch in the bag.... I laughed at them last night - they said that they would not expect me to keep my rear end in a chair during the wedding - I will be running around taking photos! :-) One less chair for them to put out... I am thrilled they understand.

As always, my mind has been really busy lately and I have felt quite emotional since Steven and Laura got engaged. I have three children and I love them all equally and I am happy for them equally and at the same time, this new step for Steven feels different. It's like it runs deeper.

When Lisa and Brian got married, it was still only months after Steven's diagnosis and I was still very freaky and deeply emotional about everything relating to him - you should have seen me pouring over the photos of him and Lisa at her wedding, of him and Laura looking so happy there........aaarrrgh - those were indeed rough days. I realize that unfortunately, I was not fully focused on Lisa's wedding and her excitement. It's not that I was not happy or excited or that we did not go wedding dress shopping together or chatted for hours about it, its just that that time was a 'freaky time' for me with definately divided attention. Fortunately I know that Lisa understands and we don't have issues about it. Thanks girl! Joleen got married in Hawaii and I think that was different as we have not yet met her husband and there was no time to plan or get excited or be involved in any real way. I am so fortunate to have such understanding daughters. So much is missed when living far apart :(

And now with Steven. In a way I feel guilty because I recognise and accept that the feelings around this wedding run much deeper than the others. Just over two years ago, all hopes of seeing this young man happy and living as he is today, dissappeared into the mist of terror that surrounded me. I remember thinking that we would make a plan to keep him in his own apartment for as long as possible and then bring him home when things got too tough.....see? I can't even say the words that come after that! What a wonderful surprise when we all realised that he had so much more waiting for him than being bedridden, having his life shortened and terrifying treatment.

Now I see this man smiling, loving, laughing, growing, responding to gleevec very well and simply moving on. I see Laura accepting every part of him, even his cml, and loving him with it all, and this is awesome. Truely awesome....

Even though I do understand logically that things with Steven will always be, ummmmm, maybe more significant? Not taking any significance or importance away from my girls, but....... You know, I could go around and around with these feelings but the right words are not happening. It is what it is and I know that the beautiful, understanding young ladies that my daughters are, I know that they accept. Maybe one day I will too. And even better, maybe one day in about 30 years time it will all be equal again :-)

And the other day I sat on the grass in the front yard looking around me at the house, the garden, seeing everything growing so beautifully, the doglets chasing each other around, Frank gardening - and I thought. I thought that life could not get much better. It felt as if I was sitting in a bubble of happiness, contentment and peace. We are not rich, we don't live in a fancy neighborhood and we don't drive fancy cars - but I realised, as I sat on that lush green grass in the sunshine, just how incredibly blessed I am and how rich in happiness and fortunate I am.

Talking to a friend of mine today, it seems as if everwhere one turns, someone is having a really rough time, learning to live with devastation of some kind. Cancer touches us even if its not directly in our family. When someone in our community, school or friend circle gets a diagnosis of a disease like this - it really rocks the hearts of those in 'good places' with this disease. It destablizes the security we tend to feel and it also makes me realise how important it is to let the people in our lives know how much we treasure them - we never know whats just around the corner. Thanks Debs!

And so, with those thoughts, I want to ask you to talk to just one other person about registering to become a marrow donor. Just one this week. Even one will help.

Love and light
and an extra big dose winging its way to Kay and family in the UK. You are in my thoughts all day long.


Friday, May 23, 2008

Ringing in the good times......

Steven and Laura got engaged in Florida this past week........:-) Laura has been a wonderful part of our lives for a goodly while now and I am totally thrilled that they have made it all official - or started down the road.

A big and very sincere congratulations to them both - I think they each picked a simply awsome person to walk along the road of life.

I am so tremendously proud of both of you!

love and light - tons of it!

Thursday, May 22, 2008

Caitlyn Raymond International Registry

This is the address of the Caitlyn Raymond International Registry - bone marrow and cord blood donor registry.

From this site you can reach all affiliated donor banks around the world, you can get the contact information from there and the name of the organizations.
Adrian is in the UK and the wave of awareness he is making should be carried all over the world, as much as we can. If you register in your country at one of the participating donor banks, you could save a life, a family and a community somewhere across the globe.
What a feeling it must be to save a life in this way - is it going to be you?
I just got some simply wonderful news, and will share it with you tomorrow - yup - you will have to wait! :)
love and light

Tuesday, May 20, 2008

This week

It's been a good and gentle week and at the same time one that is filled with all ranges of emotions, from totally at peace to feeling so much pain for a friend dealing with what must be the most difficult thing a mom has to do - prepare to say goodbye to her child. I don't know that its possible to really help anyone in this position, apart from trying to keep giving a dollop of 'normal' where possible. At times its difficult to know what to do, if anything, because the need to share my uselessness in the situation is great and what is 'normal' seems so absolutely trivial in the face of her circumstances. To ask questions means then that they need to be answered and I dont know that I could do that under those circumstances. Not to ask questions could close a door that is not really closed - maybe one needs to talk about it, to have the questions to answer. To share my sadness feels selfish and unnecessary as she has enough of her own, but not to, could be seen as not 'getting it'. But then there is no way I could 'get this'. This losing a child must be a very lonely road indeed. There is no one around you that can possibly totally get how you are feeling, no one that can possibly totally understand. But if you need a hand to dig your nails into while hanging on - mine's here. Always.

And on this side, Steven is doing great! We are so absolutely fortunate that he is reacting to Gleevec so well. I remember so well being scared, very scared and am really enjoying this feeling of quiet and peace that has arrived since the last PCR results came in. Even in these quiet days I find myself counting the weeks till I need to order the next PCR kit from Oregon - timing it just right to get it here in time for Steven's appointment for his labs. Those people who send out the kit are really arrives exactly on the date we pick and they are always so kind and friendly and keen to make things work right. It would be wonderful if all doctor offices had that feeling around them.

You know something strange? I was listening to an interview with Adrian from (go read it if you have not already!) and I heard this small little line...... I KNOW I have heard it before. I know I have, but this time it resonated differently than the other times. "Leukemia is cancer of the bone marrow." Well, duh - I knew that! So why did it sit on my heart for hours this time? - well longer than that, evidently as its still niggling at me. Had I pushed this thought out or have I come so far down the road in two short years that this is just re-facing reality? No, it does not put me into a wobble or tailspin, no it does not scare or frighten me any more than I have been, was or am. It's just that it.........well, how do I explain it. It was said differently, it was like hearing something new yet knowing that its not new, but seeing it in another light - yet not being any surprise. Nothing has changed so maybe its just that its more often referred to as a blood cancer, and when I again heard the words 'bone marrow cancer' - it felt deeper somehow, deeper than blood cancer. So the question then comes to mind - if its a bone marrow cancer, why is it called a blood cancer? Same thing? Ok - I know, that's why the internet is there and I will go and look that up.

The more reading I do, the more I meet and talk to people who have either been through a transplant or love someone who has - the more I realise just how incredible it is that donors are in such short supply and even worse that the opportunity and process is so unknown! Before Steven was diagnosed, I was an organ donor - you know, on the back of the drivers licence and the instruction to family for after I died. But that was all. It never crossed my mind that I could do anything as important as donating marrow and having the chance of giving life while I am still living! What a thought that is. I always imagined that a transplant entailed a kidney, heart or other part that could only be harvested once I was gone......... Imagine being able to give someone another chance at life and then actually maybe being able to meet them and actually see the outcome of it all? Wow. Just imagine!

How many times have we all heard others saying "I want to help people" when asked what they want to do when nearing the end of their school years especially? Well! Sign them up! Get the programs into the colleges and schools and universities, teach the kids from young so that they can look forward to being a potential donor when they get to the correct age. Make it what it is - critically important to so many people, their friends, family, kids and communities.

I think its wonderful that Adrian is doing this in the UK and I am hoping that it will overflow in a big way to other countries... lets all help get this moving in the right direction - we never know when its going to be one of us needing some healthy marrow. We never know when one of us will have the opportunity to help save a family, a community. It's never just one person affected by cancer - it's absolutely everyone around them too.

And now - here's introducing Sophie - Sophie is our newest member of the family and is already proving to be a perfect pal for Allie.... She is only 3 months old, but already the same size as Allie and is a total cutie.

And I have learned that there is absolutely no possible way to not smile when watching two pups screaming around the garden with great gusto.

love and light


Thursday, May 15, 2008

Rising above it all.........

We will - we absolutely will rise above it all.......... wings on the wind, pounding surf below, old shells littering the ground, new territory ahead.... so graceful, so free, so whole.

Treasuring moments

There are so many things swirling around in my mind lately - things that I have wanted to write about, but somehow they have not gelled enough to get here - so far... here are some.

Firstly, I heard some really, really beyond-sad news this week. Adrian, who had both aml and cml and writes his blog is in full relapse after his bone marrow transplant and will not recover. I am totally stunned and very, very sad about this. Please go and read his blog, send him your thoughts, think of his family too. His mom has become a really dear friend and the thought of what she is going through, reduces me to tears.

And now I am going to push this too..... when you read Adrians blog, you will see his determination to get more people to join the marrow registry, to show them how easy and painless it is. He is in the UK. If you are too, please pass the word around as far and wide as you can. If you are in US - do the same. No matter where you are, please make sure that you get as many people to sign up to their marrow registry as possible. Adrians blog has videos on it that show the process - its not difficult, not dramatic and you can choose how to donate. Be an Angel, be a hero - a true one! How else can I ask? How else can I beg?

Adrian's donor did a beautiful thing.... his transplant gave Adrian many more months, gave us time to learn from this young man, to laugh with him and now to cry with them all , it gave his family and friends time with him, precious time and so much more. And then there is Lea,, who also had a transplant and is doing very well. She has also been a light in so many lives and I know for sure that without having the opportunity of following both of these people and getting to know both Lea and Kay, my life would have definately been much poorer and emptier. There are thousands that have had transplants, which means that there are thousands of true life hero's - the donor's and recipients........

But there are more donors needed. Many more. Please, please think of anyone you know, yourself included if you can, and encourage them. Show them Adrians videos of the process and hopefully the registry will grow. Here is the link to the USA site with all the information you need to know about: The UK links and the videos are on Adrian's blog and I am not going to put them in here because I want you to go and read about this incredible young man and see his strength and I want you to help him with his dream of swelling the donor registry!

So many of my experiences has stopped being only that - they have become food for thought - as with my photographs. An empty beach is not really just an empty beach anymore.... sometimes when I look at those photos it talks of the times we have to walk alone in life, especially when there are not even any footprints along the way. Other times it talks of the times we want and even need to be alone....of times when we have to be alone .. of times when we are meant to just enjoy nature without any interruptions. We walked that beach, laying the first footprints of the day and probably, in places, the first footprints for a good long time. It was wonder full - yes, two words. Wonder filled.

The peace while walking along this long beautiful beach - Outer Banks of North Carolina - was lovely. I love it when my mind shrugs off the worries and the niggles of everyday life and digs deep into the things that really count. That never really happens for me in places where you can hear traffic, tv, radios or other people.... The beaches or the mountains are the places that help me find what's inside of me, and grounds me and helps me deal with what is now normal in my life and what is truely wonderful in my life.

What is normal now? Normal is that stream of worry, that faded shadow that will always hang around us now, it's the absolute knowledge that cancer is firmly in our lives and will always be. Even if the cure for cml is found and Steven is free of it, I know that the people I have met along this road will always be with me and so very treasured. Normal is learning to hold the hand of someone hurting while waiting for a result, someone newly diagnosed, someone just hearing the worst. Normal is learning to reach out for the hand of someone who totally understand when I need it. Normal is dealing with things that I never thought about, let alone thought I could handle. Normal is not only dealing with it, but not taking it on on a "cellular level". That sounds weird and strange, and although I care incredibly deeply for everyone I know now, I cannot let it bring me down or else I would be of no value - to myself, to Steven or to those whose hands I am fortunate to be able to hold through whatever we are all going through. Normal is reading daily about strong incredible people, people fighting some or other form of cancer, dealing with it the best way they can. Normal is being able to talk about cancer and death and loss without running away.

I don't know what to wish for - that the 'old normal' were still here or to keep this new incredible normal that is so filled with totally amazing people and strength from everywhere?

Mothers day swished around recently and it was truely the best Mothers Day I have known. I thought about the years with my three amazing sprogs, and looked at who they are and where they are today...... All three are happy and living their lives in really wonderful ways. None of them are professors, rich or even college grads, but they are all incredible success stories in my eyes - beautiful people. I realise just how much I took all those early, un-scared years for granted - it's so easy to do that when things are going right. Now I know just how much can go wrong - not just know, but I *know!* And this makes me treasure these people, my children, in my life much more than I ever did before.

To end this very long ramble ....... please go and visit with Adrian and help him in his push for the marrow registry. It really is very critical to so many of us and it might just help somone else's son or daughter, mother or father etc, have a chance at life or at the very least, some extra time with those that love them.

To Adrian, Kay and all your family and friends........... an extra dose of love and light


Friday, May 02, 2008

'Tis good.......:)

Aaaaahhhhhh. It's frighteningly amazing just how I can measure the stress I felt in the first 30 seconds of getting another set of good results. The world seems brighter and I honestly think I ever breathe deeper. I know that my crabbiness leaves instantaneously - even though I did not realize that it was even there!

Today the doctor called Steven with the results - and Steven got them to fax him a copy of it all too.... PCR: 0.040. last PCR: 0.080. I see that for the first time, the new International Standard is being used in reporting the PCR. It gives a slightly higher reading than the other/old way of reporting. Steven's reading with the IS is 0.14, but this does not mean that his actual reading is higher, its just a standardized way of reporting the results. I am thrilled that they are moving towards International standardization of this test! So it's *good* and in the right direction and I am mightily relieved and now totally unstressed and even my face feels loose again! I must have been frowning a lot more than I realised.

I was really uptight when the doctor did not have the results in on time for his appointment and this has got me thinking of the lack of care - emotional care - given to so very many people dealing with cancer. No doubt more of this will come tumbling through my fingers at some time, but for now, I am happy, relieved, content and looking forward to a week at the beach.

We are leaving on Sunday morning for the Outer Banks in North Carolina - Cape Hatteras Island, Okracoke Island, to mention just a couple. There are long stretches of undeveloped beaches and we are really looking forward to days of slow beach walking and bicycle riding and photo taking. Doglet is not looking forward to the drive, but I know she will love the beach.

Love and light

Thursday, May 01, 2008

Guess what...

So Steven went to the doctor today but the pcr is not in yet, they say. So I called Oregon, and guess what - they sent it over a week ago. Can I get through to the doctors office now? Noooooo.
And of course Oregon could not fax it to me nor could they fax it to the doctors office without them inquiring about it.
Big Sigh.
Sometimes I think that dealing with cancer is so much more frustrating and scary than it needs to be - if the tests came back in time, if they were put in the right folders, if the right tests were done, if the doctors, nurses, staff even had an inkling of the stress the whole family feels around test time..... if, if, if......... then it might be just a tad easier.