long term reality sinking in

Well - today I had a good day. It started out a little shaky being scared about the long term prognosis but a couple of girlfriend phone calls soon cheered me up and work kept along at a steady pace to keep my mind busy - so it was a good day!

I got myself signed up on a GIST listserv where I can share my story with others who have the same cancer I do. I think it will be a great help.

I have started writing down questions for the Dr. when I see him
What is the long term prognosis?
When will this be considered in remission?
What is the rate of recurrance? metastasis?
What do we do to monitor it?
How often?
Should I go back to seeing the oncologist?

If you can think of other questions I should ask - please let me know.

I have to find a more balanced way of living/dealing with this cancer. I am going to be living with it as part of my life for sometime to come, even if it is a check up every 6 months right now. I have to get on with living the rest of life with GIST as a part of it and not the primary focus. I am not so much frustrated or freaked out by this longer term prospect - it is really just a reality that is starting to settle into my thinking. I was thinking that once I had this scan at the end of the month I was hoping, or maybe deluding myself, that that would be that, it would be all over. Well maybe the hardest part will be over - but it isn't all over - it is sinking in that at least for now - this is going to part of my ordinary life. It needs, for me, to become just something else I do in my life - I go for my GIST check up. I want it to sound horribly mundane, because up to know it has taken over my life and I want to put it in my life but not running it.

I have started setting up after work get together's with friends prior to the scan - to keep me busy and engaged and to keep me from worrying too much. I know some of you here I have made plans withs - and others we will get it planned.

Well - goodnight for now and lets hope tomorrow is a good day. I should find out what kind of scan the Dr. wants and if we can do it on a particular date. It feels good to take the tiny steps to get this rolling and I feel positive.