Sunday, October 01, 2006

New normals to find........

It was absolutely wonderful to see Steven when we got back home! I drank in how he looked, trying not to show him how I missed doing that. Most of our family and some of his friends, were able to walk in the Light The Night Walk in Chattanooga with him and said it was wonderful!

We are back from the Roadrunners trip, all unpacked and almost used to being back in the house, getting used to having a little doglet as a new addition to the house - she's sooooo cute! And we re-open the shop again tomorrow morning - no better day than a Monday to start a new week - and judging by the emails, phone calls, the people pulling up here yesterday and today, we will be busy for a good while. Much of the trip has already started fading - just the people are standing out in my mind. Time to print the pictures!

Steven has his bone marrow biopsy scheduled for this month up in Nashville. Unfortunately it is on a day that he has a serious college class so I am going to try to reschedule and see if we cannot have it done here in Chattanooga, like last time. This month Steven has his 23rd birthday, Lisa gets married, Joleen comes home for a few days before being sent to California for the next step of her Marines life, and Lisa adjusts to a pregnancy in its second trimester.

When Steven was diagnosed with cml in March (note that cml will from now on always be referred to in lower case letters - a power play on my part!), we already had the RV vacation planned and then I was able to concentrate on making it more than just the original vacation; Steven was, and is, doing well, and I had many other things to slide my attention on to.

Now we are back again. These two months have been a wonderful reprieve from dealing directly with cml and in many ways it has made things easier and in other ways I have felt myself purposefully piling on the coverings trying to bury the worry while out there. So much of the road trip was saying hello and goodbye to people. Penny, who I won't see again, Debs and her family, Gale and so many others. I listened to many stories of other people - some so sad I had to cry and my nails got shorter, others so full of hope and success that I could put my worries about Steven far away for a day or three.

And I find myself starting to rev up again. The next blood test is coming up and the PCR and the bmb - and the long wait for those results. I feel my chest closing up just typing these words.
I know I am tired, I know I am fumbling around trying to find new normals, I know I am affected by Penny's condition and I know that these flippin tests get me terrified - every time!

Dr Druker advised us to get all family tested to see if someone is perhaps a bone marrow match for Steven - this entails contacting people in South Africa too and I am hoping to get all the local family here together one day soon for testing. I know they are all keen and there is a wonderful hope in each one that they will be "The One!" That would be absolutely, positively wonderful.

I also need to get back in the swing of things with the newsgroups, how others are doing and all the new information that has come out since we left. I tried to keep up while we were gone - but was not really successful at all.

So much to do and hopefully that too will help the time to pass until the test results come in.... I must ask Steven how he deals with all this. I will start walking again soon!

There is still so much to say about the roadtrip, the wonderful people that have now become a permanent part of my life, but the words won't come - maybe they never will but that does not make those feelings and emotions less important. It's time to look forward to the new adventure of life right now and to hunt that elusive 'new normal'. I read somewhere that 'normal' is only a setting on a vacuum cleaner - I go with that.

You can see some of the pictures from the roadtrip at this address:

Please visit Penny's blog and read about this incredible woman and the strength of her family: And don't forget to look at, and pass on to everyone you know, the web address. This site is an ongoing project to collect funds for reasearch for both leukemia and lung cancer - all money collected goes to the appropriate organisations........

Thanks, so many really big thanks. And many thoughts and hopes and wishes for Penny and all her family....... such a difficult time for them all right now.

Love and Light

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