Tuesday, July 31, 2007

No news yet..

The wait goes on
Steven looks great and his attitude and sense of humor are wonderfully intact.
So all is good :-)
Love and light

Monday, July 23, 2007

The wait - again

Yes I am wobbling again. Yes this is scary - no matter that it is not urgent, that there are other meds to take care of the situation if Steven is losing response to Gleevec. His counts should be going down, not up. This is not how its supposed to work, dammit! I find myself becoming frilly - short of temper and patience and cml is taking a firm hold on the main part of my days. The three week wait has started again after Steven had his blood drawn again for the early PCR on Monday.

There are still times when I get angry, well not angry, but......... yes angry at this all. Sometimes it's a selfish feeling, one that revolves totally around my life and what worries I don't want in my life - but it always comes back to that young man with the incredible attitude. Always. And then I get angry some more. Why him. Why not him ....... and around and around I go.

So Frank bought me the latest Harry Potter book for me to dissappear into... I used to read only non-fiction stuff, but now I find that reading the "impossible and the untrue" empties my mind and I sleep much better. The debates and conversations dont happen in my mind when I read non-serious stuff.............

Sometimes I wish I was inside Steven's head so that I would KNOW how he is dealing with this. Above all, I don't want him to be scared, but I know that that's not something I can control and its a totally normal thing to worry. I know that the not nice things I have had to deal with in my life have made me stronger - but geez, none of them were as deep as cancer! Hopefully this will make this son of mine stronger too and one day he will look back on this time and breathe easy.

So the wait has started again. May it be easy on Steven and Laura and may the result be in the direction that we so desperately want it to be.

Love and light

Saturday, July 21, 2007

What a ride! :-)

These past two weeks have gone so fast - it almost seems like a dream already. I boarded that first airplane with a definately elevated heartbeat and sweaty palms and then when I sat down, discovering that I only had half a window, I thought that if Steven can handle this cml I can handle a simple seven flights! And I did. Apart from the take offs and landings I loved the flying, taking many, many, I mean - many! photographs, many with the airplane wing in it. The clouds were awesome, the views of the snow tipped mountains, the rivers and fields below - there was just so much to see! I even saw another airplane flying far below us in the opposite direction. The landing in Denver was bumpy - very bumpy, coming into Seattle was so beautiful with the volcanoes dotting the horizon and Puget Sound glimmering in the sunshine, flying over the Rockies into Alberta was simply stunning and the bestest (yup, an Annie-word) was coming into Chattanooga again. The sunset from up there was simply so beautiful that it brought tears to my eyes and then a few minutes later the lights of Chattanooga sparkled in the dark like gems winding around the river. Absolutely wonderful in so many ways.

I came into Denver at full speed and never stopped! LOL Gloria treated me to The Taffetas (60's musical) - and yes I sang along with a good 80% of the songs :-), The Titanic show was awesome, downtown Denver - fascinating, a proper High Tea, a pedicure - my first! That was truely awesome :-). We saved all her data on her computer, reformatted it, reloaded and made sure it was working again, all inbetween shopping, visits and many laughs and chats........ I think I can count the number of hours I slept on that weekend on one hand! And it was wonderful - simply wonderful. I was exhausted when I left Denver, but knew I would miss Gloria - and I do. She is a lovely lady with a twinkle in her eye - unless its 3am! LOL

Debs and I had met already and it was with a sense of peace that I saw her at the airport pickup place. She whisked me off for lunch at a beautiful resturant right on the banks of Puget Sound, where Seattle in all its glory lurked on the opposite banks while on our side things were quiet and gentle, with little rowing boats waiting to be taken out and a sailboat rocked gently across our view.

We motor-mouthed our way through the next few days - lunch at the Space Needle (the view was simply awesome!) the Pike Street Market, a walk through a stunning state park, a lovely drive to and from Bellingham, lunch with her two beautiful daughters - Laura looks so great and has and incredibly positive attitude not only towards cml, but towards life in general and the girls are so close and full of smiles and fun. We went on a short ferry ride too which was so refreshing too - I always breathe deeper when on the water. And we even had time to sit and share some photos as well.

It was so good to be back with another person that 'gets it' totally. This cml thing is such a big part of my life, but only another mom with a child having cml can really understand how deeply my joy and fears are so tied together, only another mom can fully understand all aspects of dealing with this on all the levels that we do as moms. I definately dont mean to put down others caregiving people with cancers, or other parents - but a mom does feel it differently. I am so incredibly fortunate and blessed to have found Debs, clicked with her and then being able to get together with her again now. She has been one of those people that have been instrumental in me keeping sane this past year and a bit.

And then I headed up into Calgary, Canada to Trish - Penny's sister. After rushing around seeing so many beautiful and awesome sights it was wonderful to be able to be quiet, relax and just get to know Trish and her 'other half'. Her sister brought photos from their trip to Egypt which enthralled me and got me interested in checking out many things on the web. And just when I thought I was going to really get some rest, Trish and Stu took me to the simply most awesome waterfall! A gentle river flowed over some lovely rounded rocks and then headed down in a beautiful waterfall - it all looked so peaceful until we headed down the very narrow, steep and winding, slippery path to the bottom of the falls........ I walked behind, watching Trish head down with her heart in her throat and could not help laughing at her. The 'hike' was well worth it when that cool breeze and fine spray hit us as we walked really close up to the falling water.....yes, we did have to head up that path again. Interesting, so say the least.....:-)

Then on to another beautiful waterfall - 133 steps to the viewing point. Yes, I did count them on the way back up and I had to count slowly to make sure I got it right - that was my excuse for going slowly up those steps and i am sticking to it! Of course I took many many photos and I had to laugh when I realised that my clicking finger was being matched by Trish all the way! LOL.

All in all this trip was a simply wonderful, exhausting, exciting and amazing 10 days with some really awesome people that are all so filled with love and understanding, fun and life. A really big thanks and heartfelt hug to you all! And its wonderful to be home again too. I faced a good many of my fears on this trip and through it all, Steven and all others dealing with cml and other cancers helped put my little wobbles into perspective. If you guys can deal with cancer - I can deal with my measely little (now gone) fears. Thanks!

Steven, you are still my hero!

Love and light

Thursday, July 05, 2007

TIme to fly

Tomorrow midday I fly out of here to meet up with Gloria, Debs and Trish...... wow - the time certainly arrived with a bump. Yes, I am packed up almost ready to go, well - as far as the act of leaving is. I dont like flying. At all. And whenever we go away, I have to prepare in case something goes wrong and I don't make it back. So there are letters that I write, and re-write, then there are the instructions I leave and it goes on and on and I just have to stop, relax and know what will be - will be. I know I go overboard and yes, I even drive myself nuts doing this. :-)

As soon as I get back it will be time for Steven's re-test of the PCR and I have been very fortunate in the timing of this test..... mind you - nothing I do can change the outcome, but I could not be away when the new results come in... So all is good.

All three my 'chickens' either called or came around to say goodbye - such a good feeling. Its going to be strange to be away without Frank and I know that the time is simply going to fly by and I will have a blast.

So, until I get back
Love and light

Wednesday, July 04, 2007

Lottie's visit

What a wonderful visit this was! Lottie and Jimmy arrived on Monday early afternoon and we quickly twisted their arms to stay the night in the rv. Steven and Laura arrived after work and we all headed off for a meal at Applebees and some ice cream at home afterwards. Lottie picked up Steven's cbc that he had done that day and her comments about Steven's normal readings brought a smile to his face.

We had a lovely, laughing evening and I think Steven was given a lot of hope after seeing Lottie so full of life, laughter and mischief after 11 years of fighting cml and not ever getting even close to his response to any drug - so far! He could see that life does go on and I know he has heard that before from me, from friends and doctors, but here was a person really doing it and doing it very well indeed!

Lottie and Jimmy are wonderful, caring people with a beautiful sense of humor and a zest for life that is simply great!