Saturday, December 23, 2006

The Most Incredible Year

So finally Steven went for his blood work this past Wednesday and dropped the results off with me today. Every single one of his counts are in the normal range! I know that other tests are more important than this one, and that the leukemic load can be really high and gleevec will still render his blood counts normal. BUT. This is lovely. We know that he is reacting well to everything so only have reason to know that all is well. He looks less pale even with the stresses of Christmas and year end exams and.................. it was just good to see those results all in the right places!
Big Smiles
What a Christmas gift.

I dont think there is a family out there that has not been touched by cancer in one form or another. I thought we were one of those few and fortunate families, but I had put to the back ofmy mind my aunt who passed away from cancer when I was a teenager, a sister in law who passed when I was in my early twenties and my maternal grandmother who died from leukemia many many years before I was born.

This Christmas is the first year that we all have cancer full in our faces. But it will not go down as 'our first Christmas with cancer' but rather the first year that we have seen what is really important and the beginning of a new way of living, despite the fact that cancer is now thoroughly in our lives. We will learn each day to find joy and special times and be thankful for the extra depth and friendships this is adding to our lives. I know that we are all really, really fortunate that it is this type of leukemia and that Steven is not only reacting to the medications so well, but it handling it all apparently very well. I heard the other day that he often forgets he has this disease, and that was about the best thing I could have heard! :-)

It was with a really thankful heart that I wrapped all our Christmas gifts today. I took a moment to think and try to imagine how it could/would have been had the cancer been of a worse strain or Stevens reactions to his meds, non responsive. I thought of all those families that will struggle with the empty place in their homes and hearts this Christmas especially, and I could only be deeply grateful that I could wrap those gifts with a smile and a prayer of thanks.

Of course I thought of the many other people I have met or who I talk to since April this year. Penny's family are so much in my heart and mind as are the other really special people who have helped me through these past nine months. Trish, Debs, Gloria - just to mention a few - thank you! After knowing Penny for such a relatively short time, I dont quite understand how I can miss her the way I do. But I do. So much good came out of such a short space of time of knowing her and that empty space she left is large. Miss ya, girl. I think of you so often.

So as I wrapped the gifts to go under the tree this year, I realized that I had been given so many special gifts in the form of kindness, love, laughs, friendship, understanding and so much more, all year through - so much has been added to my life in such a short space of time.

Instead of it being a 'bad year', 2006 will go down in my memories as the most incredible year yet. The absolutely most incredible year filled with the most wonderful, amazing people.

Steven - you are still my hero!

Love and Light

Saturday, December 16, 2006

Skilpad Unwrapped

On Christmas day we plan to leave for the coast again for about a week. So I went to the RV, wanting to pull the wrap off from the windows - one can see through them from the inside but it made everything just that little bit darker. Anyway, once the windows were clear, I had to patch out some partial words and figure out a way to add those now missing words elsewhere so the message still made sense. Needless to say, I did not have matching pieces for where I needed to patch and while I was making a really good but pointless attempt at achieving this, I pictured us back in an RV park, stuck at the back somewhere and having people walk big circles around us, avoiding contact. This was not what either I or Frank needed or wanted, so I started thinking that it was time. Time to pull the wrap off. At first we had said that we would keep it on until summer next year, but the reaction to the wrap was not what we had wanted it to be anyway, it was almost counter-productive.

So when today grew good and warm, out came the ladder and up I went. The wrap was pretty easy to get off at first, it was stuck on there pretty well but peeled of smoothly as long as I pulled gently with even pressure. That changed after the third blister popped! But it was good. When the lettering of came off, I spoke to Penny, thanked her for riding with us and everything else too - it was lovely up there on the top of the ladder in the sunshine talking gently.

As the sun moved, parts of Skilpad got shaded and the wrap became stubborn, clinging firmly to Skilpad. Frank moved her for me while I ran cold water over my hurting hands, but I was keen to get out there again. Frank knew that this was something I needed to do by myself - at least for the most part and he left me to do my thing while building me a jerky (biltong) drying box. It felt as if I was really pulling leukemia out/off, relegating it to an ugly pile on the ground. It felt good to see everything good and clean where the words were before.........was strangly cleansing and very therapeutic for me.

At one point in the middle of pulling the big word 'leukemia' off, I realised that Steven has had to drive past this every day on his way out in the morning. What a way to start his days with leukemia literally in his face at the start of every one! Wow. And then I really let rip and I found myself humming and smiling while blisters popped into sticky vinyl wrap! :-) Lovely! After hours of tugging at the vinyl, Frank joined me and grew his own blisters....... It was all good.

And now Skilpad is as she was before. If only I could make that happen for Steven too by the simple act of taking off a wrap. But he is doing so well that I am really not going to complain or anything at all.

I know for a fact that so much more could have been done with fundraising with that RV if only things had been done differently... but I looked inside myself and knew that we had to move forward and that that included removing the wrap. I am really glad we did that and we were really fortunate to have such warm weather so late in the year that allowed the relatively easy peeling of it.

I carefully cut out around all the names that were written on the sides and have those put on backing paper, in the shop. I am going to put them in the photo albums that I will be making about this trip. Right before starting to strip the wrap, I did my final walk around, dragging my hand over each name and sending positive thoughts and really big thanks to each one. Some people I am still in contact with but I will always hold each one of them close in my heart. I still say that those people who;s names were on our sides, were what truely made that adventure incredible.........

And so the RoadRunnersUSA trip has truely ended now. It was time.

Big smiles here tonight.

Monday, December 04, 2006

The Elephant left! :-)

I had to find a world map the other day, open it up and show it to the elephant that has been sitting on my shoulders for a good long while now. I pointed out where Africa was, promised it almost unlimited tons of grazing, lots of shade and friends and that hefty elephant left without even a "goodbye" or "thank you ma'm". Boy, is life much better without that weight on my shoulders!

At times I wonder if its just life, or whether this cml thing is what is getting me down. And then I realize that the more I think about it, the less I am living, so I live without cml in the topmost portion of my mind most days and find it easier than before. The new normal? And this is even with blood tests due this week - doing good, I am! :-)

Something had been playing on my mind since we were in Oregon and the appointment with Steven and Dr Druker and Carolyn . I have not been able to voice it up till now. When Steven was diagnosed, my "mother instinct" kicked in and I 'took over', trying to protect him, to make it easier on him. I poured over the results and tests and worried etc, telling Steven that he can "leave it all up to me and get on with his life."

Dr Druker and Carolyn taught me something tremendously valuable - it cannot work this way!When we were there Steven was, rightfully, the person both Carolyn and Dr Druker spoke to and focussed on. At first, and I mean for just the first minute or three, I was almost 'put out' and then it sunk in - I cannot take this away from Steven and he HAS to face it, deal with it together with the rest of his life! And I have to let him have it..... I have to help him deal with it not try to shield him from it. Cml is with him as permanently as his right arm is and he better learn all about it and not allow anyone to totally shield him from this.

That was a very serious moment for me. It made me realise that this is not my disease and that the very best I can now do as a mother is to help Steven cope with it - not try to take it away from him. Now, when he goes to have his blood drawn, he brings the results to me to file and has started discussing them and asking questions. Maybe one day he will even read the support boards I read and get so much help and information from.

And its getting colder here, life is moving on. Christmas is arriving, Steven is looking great and loving being back on day shift, as is Laura! He has a new job within the same company and will not be doing the lifting of heavy books as he was before which will hopefully ease off the knee joint pain he has been having. His college is going really well and I have decided not to let this be 'the first Christmas with cml' but to simpy let it be another Christmas where we will all treasure everyone that means so much to us.

Today when I signed in to write this update, I remembered that it was because I chose to use as a blogsite that I met Penny - because she made the same choice of blogspots to use. Funny how she pops into my mind so many times a day.

Not a day goes by that I dont realize just how fortunate we are in all aspects of our lives, or how proud I am of Steven and all his friends and Miss Laura too for getting on with life in a most normal manner. Truely fortunate and extremely thankful.

And for everyone reading this - you have a reason for coming back, or for popping in here for the first time, may whatever it is, be gentle on your soul.

Love and light