Thursday, November 06, 2008
"The Same" ?
Ok - here it is......
Bcr-abl is detectable, but housekeeping gene level suggests a partially compromised sample such that accurate quantitation is not possible. However, this sample appears to have comparable bcr-abl levels as this patient's sample from 7/17/08.
It's just as the lady on the phone said - "the same" and I am just going to go with that till the next pcr.
The whole day today was unsettled for me. I knew that there was nothing dramatic in these results, but because I did not know the exact wording, my soul just would not settle down and accept. I get so tired of feeling like this. The withdrawn, detached, pre-occupied feeling even when there really are no flags to warn of change, is a lonely place. I guess its a selfish place too, as I don't let others in when I am there, which is why its lonely there. I don't want to hear the 'it's going to be ok', or the 'why are you worrying' or the 'he's fine! Stop worrying!'. I know all these, but I want someone to bash the establishment with me - I want someone to be pissed off and frustrated right along with me - but at the same time, I know absolutely that its not necessary nor is it the wisest route to go. My online friends have been awesome in giving me exactly the mix I needed and wanted and Frank has been Frank all along, which creates a tremendous grounding for me.
Anyway - right after Steven said that he would drop the 'non-results' off tonight, I felt the frillies leave. Wonderful! I know that I worry more than others do, and maybe more than what I should - but this is me and I can only be totally me. I am much better in the in-between months and really did not even count the weeks till these results came in - it was a pleasant surprise last Friday when I realized that it had been 3 weeks already! So, I am improving. It's necessary.
So many things were screaming through my mind today and this evening - so much to write about, all those upside down, inside out feelings......but I cannot grab hold of them now long enough to describe them. Lovely :)
It's incredible to think that we are nearly at the end of another year. They are just screaming by with no consideration for all the things I still want to do. I see my kids getting older and older and a woman who looks a lot like my mom, seems to be appearing in the mirror in the mornings.... Soon we will be at the three year mark with leukemia in our family and I have to say that I am incredibly, incredibly grateful for the way it has progressed, or rather, NOT progressed. There are way too many people having a really rough time with this disease......
Special thanks to Lea, Diane and Kay for the hand-holding and flittering you have done, once again, with me during these past few days. Kay, your description of medical administrators was priceless! Thanks everyone for the comments you post here, and HockeyChic - I wish I had your email address. All of you help so much during my frilly times. Many many thanks.
With a smile
love and light