Tuesday, January 30, 2007

Results.. and more waiting.

I have not written for a few days since getting Steven's results and that's probably because although I have the results of his PCR, I am not sure where we are going from here. The trend is still downward - with a reading of 0.019%. But. Dr J says that he thinks they should increase the dose of Gleevec to 600mg. He is waiting to talk to Steven's specialist at Vanderbilt and I am waiting to hear Dr Druker's view. His first PCR was 0.13646, 2nd: 0.02868, 3rd: 'negative', this one: 0.019%. It's going down!

Waiting. At times this is worse than facing cancer itself. The waiting eats me up and leaves me drained. It's something I had better get used to............

Although the downward trend is good with these PCR results, apparently it is not a big enough log-reduction at this stage. AAAARGGGHHHH! My personal feeling is to keep going on 400mg until at least the next PCR in three months time and to see whether the slide downwards is faster by then. When he had his PCR in October, a qualitative PCR was done and it came back 'negative'. I was not happy with only getting a "negative" as a reading although the doctor said that that was sufficient, that as long as it read negative it was ok and we did not need to see the numbers. Now that we do a quantitative test and the numbers can be seen, now he is talking about upping the dose? It does not make sense to me. At all. If we had done another qualitative test, that would also have read negative. And then what would his reaction have been?

I wish I had a feeling of being able to leave all this up to the doctor, but unfortunately I still have this incredible need to check up on and second guess, research more and get other opinions as much as possible. When Dr J first called me with the results, right after telling me the results, he started talking about a bone marrow transplant again, asking about matches. Even now, my guts churn in my stomach and I feel my breathing coming faster when I think of this option.

The information I am getting/reading/hearding says that these PCR results are ok - not absolutely fantastic at all - but definately going in the right direction and definately at the very least - ok! Many many people take many years to reach these readings. WHY is the doctor talking BMB's and increased doses? I don't get it.

I wish I did.

I don't.

It drives me nuts.

Every three months I become a true Gemini - dual personalities. I function on one level between the PCR's, trying and pretty much succeeding to keep everything normal, work, play, move forward etc etc. And then 'test time' comes around again. When the results are good - its great, but now when I feel that the doctor is wobbling between treatment options, my second level of functioning kicks in. The worry runs like a river below the surface again, making those rocks green with algae and slippery as hell, and I have to fight to keep from slipping into that full worry mode.

I have to remind myself constantly not to keep talking about this when I talk to Steven, at least until I have something definate from the doctor/s. He knows I will be honest with him, but he needs to move forward as strongly as possible, and not be dragged down by worry until its necessary or not. He knows I do this and its ok from both our sides.

The stress for me is something I have to learn to deal with. So often I have thought I have it under control, but then I realize that I don't, not really, and especially not during 'test times'. I really, truely, sincerely hope that Steven is able to move forward and around this, more than I am - especially around test time.

Some good news! We have collected another $1040-00 for cancer research through our www.PenniesforCancer.com website !!! May every penny be blessed and do something truely wonderful - just as Penny did.......

How can I not see life as simply beautiful when this is one of the last things I see before going to sleep ....

Love and Light

1 comment:

Trish said...

Know you are always in my thoughts and should you ever need a friend all you have to do is holler. :)

Also know how amazingly strong you are. You question and look for answers because you want the best and Steven deserves the best. You have every right in the world to do that.

Love ya!