Thursday, April 26, 2007

Natures lessons......

This past week we have walked the beach till we look like crayfish, climbed a lighthouse - all 178 steps up and 178 steps down!, picked up coral and shells, cycled all over Tybee Island and toured Savannah by horse drawn carraige, just to mention a few things......... and cml has finally taken a backseat in my mind for a good few days.

This does not mean that I have not thought of it, I have. I have realized that to not think of cml would be abnormal - its now firmly part of my life, as much as Steven is a part of my life. It's really good to see that a mere year after Steven's diagnosis, I am dealing with it all in a much better way than before - it feels healthier and so much easier on me and everyone around me.

I know that this is able to happen because Steven is reacting so well to the meds, and I treasure every day without a cml wobble.

Walking on the beach I watched a seagull hanging in the wind, just a foot above the sand and thought of all of those with cml and all their caregivers - just hang in there! Hang in there, the wind will pick up and we will glide again........ I saw a big bubble in the surf and could see the shells through that bubble as well as all the other shells and it made me think of how we sometimes see life - through a bubble without seeing the full picture.

And while writing this about how good I feel, how wonderful Steven is, in the back of my mind is the cbc and doctor visit coming up in the first week of May... May - may it all go very well, may, may his bloods be perfectly on target or as close as possible, may he feel great and may the doctor have done some more reading and learning and may Steven have a great visit! And may the next PCR in June keep the positive side of May! The month of May......:-)

Tomorrow we will walk the beach again, find more coral and I will get even stronger in my resolve to live with cml in my kid and in my life. I will get stronger in my resolve to be stronger for Steven, I will get stronger in my resolve to be the very best I can be and, oh please God! - to learn how to find the strength to find patience while waiting for those flippin PCR results!!

It's wonderful to see in nature, the lessons I can use in my life to get stronger, to hang in there and to see more than just that bubble we all live in at times......... There is another one that made me think of this all....... there is a pole on the beach that has barnacles growing up it to the high water mark. This pole had barnacles as high as I am short! All 5.4ft! So here are these tiny little barnacles in this enormous ocean, finding a narrow little pole to cling to, but then the water is swept from under their feet............ and they cling tightly way up in their sky, hoping like heck that the seagulls don't get them or the sun does not bake them dry, waiting for the water to come back and give them what they need again......... And the water always comes back.

I see a lesson in that too, but its late and I need to get some sleep........and to think of that one some more.......
Here is a really special thought to little 7 year old Sarah, just diagnosed with cml, and her mom. Hang in there, mom, the ride does get smoother.......
Love and light

Sunday, April 15, 2007

How we fight.........

I think that the worst thing with this disease, is that there is nothing to do! Now that the diagnosis is over, the game plan in place, its all just waiting. Endless waiting. Its not like other cancers that can be treated and then 'cured', a 5 year "if nothing happens then you are ok", time period. With this one there is nothing to do. Thankfully it seems so easy, simple and fortunate. And I hope it is. I really hope it always is. Not only for Steven, but for all those that I follow on their blogs and on the support boards. Its difficult to read about the 'bad things' that can go wrong, hard to read about those that develop the complications, mutations and horrible side effects. These just reminds me that there could be bad days ahead when I will be wishing for nothing but this nothing-to-do-but-wait time..

I wonder if I think about this more than Steven does? I mean, do I worry more because I do the reading, researching and hearing what can go wrong? If it is this way, then I am glad its this way because it will give him a few more years to concentrate on the other stuff in life.

Yesterday it felt like ages and ages that he had last had a blood test done - its only been 5 weeks! When it feels like this, then I want to see another cbc in front of me. I want confirmation that everything is ok. But his next appointment is only in 2 weeks time and I will wait, and try to put this at the back of my mind as much as possible.

I am not down or worried or anything at all at this stage - just writing my thoughts. The other day I read something about cml moving very fast to aml in some instances. My heart dropped and I stopped reading the board for a few days until I could put it all in perspective again. I think thats what I am learning to do more than anything.... put things in perspective. Steven is doing great and I don't have a reason to worry at this stage - well, not to spend too much time worrying unnecessarily, although that's so much easier to say than to put into practise much of the time.

I do find that the days go by and my mind touches on cml at odd times, but more often now I think about the positive side of things. I love how Steven has grown, I love the changes all this has made in my life, I love the smile I see in the mirror again, I love the people I have met and are still meeting, in this short year and I simply love the good warm feeling I get when I find a penny! So much positive has come out of one short year with cancer.

In writing this I have discovered exactly how we must fight this cml battle - we fight it with positive thoughts, positive smiles, positive people! We fight it with love and understanding, with caring and listening. We fight it with courage and all the time we are allowed here on earth.

And we fight it together with all the others out there that are fighting the same and other battles. We will win. I insist. We will win.

Love and Light

Wednesday, April 11, 2007

Today I laughed.........

I thought I was a fairly normal person, dealing with life in a good and normal way.... well today that changed - I know I am not normal at all! I told my DOG to say goodbye to a customer! LOL.

Today my daughter and granddaughter were here, my mother and my sister. We had a good few sick computers in the shop and then one of our customers came after hours to pick up some business cards I had made for them......... I started off by showing off the photos I have taken of McKenzie Rose - "ooohhhh, look at the dimple! look how pretty she is", general coo-ing that all grandma's do :-) and then when she was walking out of the door, the doglet in my arm, I told the dog to say goodbye! Phew, what a moment that was as I shut the door, laughing at myself. I, me, Annie, actually told a dog to say goodbye! She is a cute, little sweetie pie of a doglet, but still a dog.....

Ok. So I have since decided that its ok not to be normal. I have never been normal. Normal is just a setting on some or other electric appliance. Do I really want to be normal? Not any more :-)

I am still nervously contemplating at what I am becoming, a coo-ing grandma, a more relaxed mother of a cml-er and a dog lover! Dang - when did all this happen? It feels............ not bad at all!

With those content thoughts and smiles I will get today over with and go lay my fast graying head down on my pillow.

Love and light

Thursday, April 05, 2007

Some days

Some days are like these last two. They are horrible. I was looking at photos of Steven when he was just a small little boy, and I could not help the tears and sadness. I read on the support board of a rare case of cml turning into aml and I listened to an aunt tell of her 24 year old nephew dying of aml. I flippin cry! I look at recent pictures of Steven and I find my eyes leaking. Its not always like this, most times I can convince the most active part of my brain that all is ok, but not these last two days, for some reason. It feels like all the glue is coming unstuck inside of me.

I know things are going well right now. Steven is doing well and feels good and everything but that is not the point. That is not what is going on inside me today.. As much as this is Steven's cancer, these feeling are mine and they are terrifying.

I don't want to read the support boards these days - I dont want the bad to relate to Steven at all, I don't even want the good - I just want it all gone! So? I am having a floppy fit........... It makes me really so sad. Everything in life is tainted with this cancer. Nothing untouched.

The other day I started reading this blog from the beginning- I could not do it. I realised that there is so much to process, so much that I was not even able to write about while it was happening. Many of those things come back to me now when talking to others with kids, family or friends with cancer. I think that if we had to think about how to cope, especially in the early days, it would be almost impossible. Looking back I can see that I worked on auto pilot for many many months. Actually, I started thinking again after we got back from the road trip in September. It was then that everything had quietened down. The excitement of meeting Penny and Debbie and the idea of another road trip as well as the initial scare had evened out, the organisation of the fundraiser, the wrapping of the rv and everything that went with that was over. Even setting up the website was done with - Penny passed on and everything became very real, awfully real. It became a new normal again. One that I have obviously not mastered yet.

Right now I feel like there is a very flimsy gate holding back another flood of tears. What is the matter with me? This is a year old already - why am I not getting used to it? Maybe I am, but it sure does not feel like it. What does Steven feel? How do I ask him without getting him to think about it all over again - but that is nuts, because it is part of him so he won't have to be reminded about it - its already there.

After just a few emails a few moments ago, I feel SO much more in control and ok. Debs is a treasure - a total treasure and its amazing how when I needed a hand holding/butt kicking to pull me out of this self imposed misery, she was right there - all across the continent, but right there! Just two emails later and I have a genuine smile on my face and in my soul - the first in way too long. I bet Frank is going to be relieved too! Thanks a million, Debs - you really are a treasure. :-)

So, on a much happier note, and feeling a bit like a wimp, I am going to hop into bed and enjoy the good thoughts, amazing people and happy moments in my life.

I am torn between writing only the happy stuff, the surface stuff, reporting the facts, but that would not be real. I started this blog to help me work out some of my feelings. The cancer is not mine, but these feelings are and this is my way to get them out so that I can deal with the whole situation in a much more controlled and mature way. I need to get those floppy fits out of me. This is my way. Some people might think that I am making Steven's cancer about me. I am not - although I wish I could take it from him. I have to acknowledge my feelings, all of them, in order to get on with my life and I think that it would be awful for Steven if he managed to get on with his life, but saw me not coping with it all. I cannot do that to him. So this is my way of staying strong for him too.

I know tomorrow will be better - today already is.
Love and Light and laughter.