Saturday, November 01, 2008
Recently, and very sadly, Cam passed away after two transplants to try to whip this disease. I also started reading a blog just last week of a lovely young lady, Erica - and now the news for her is not good at all either. Others like Tyler and Dawn are also battling so freaking hard against it. WHAT is going on??
I don't want to think of this disease in any other way than it being 'the good leukemia', or 'easy to control' or 'like diabetes' - but this wait for the quarterly results really blows all those easy thoughts to the wind and leaves me a much less nice person to deal with with many thoughts that I definitely don't want.
I wish that the doctors, nurses or the aids or receptionist or ANYone at the onc's office would realize just what waiting does to one, and in a show of utter kindness and understanding would call people with their results! Or even just call to say that they are in and ............ Well, you get the idea. Instead, I am left counting the days since the blood draw, biting my nails while I wonder whether three weeks is enough time to wait before calling the onc's office and being told that I will get a call back, and then more waiting. I could not handle that on Friday, so I did not even call. Steven's appointment is only in 2 weeks time and I know the results will be back way before then.
Can I wait? If I have to. But do I have to? AAaaaarrrrrrrrrrgggggggghhhhhh. At least it's weekend again and I cannot do anything about it till Monday anyway.
Another thing that gets to me is that in this time of worrying about those results, I tend to look for other blogs and stories about cml. I keep hoping to find happy, successful stories. I want to hear about others in either Steven's position or mine, that are having raving success with 400mg Gleevec and getting on with their lives. But sadly, I keep coming up with more and more people struggling to live, having to change meds, dealing with difficult side effects and on and on.
Even the support boards seem to be filled with people moving from one medication to another because of mutations or lack of response or something. I don't have any reason to gripe at all - Steven is doing well and joining in those discussions seems, well, silly in the face of the struggles of others. So, again - I am left clawing in frilly-ness for happy stories to help me through these waiting days.
I know - I am fortunate. Steven is looking great and so far Gleevec is doing it's thing........... and now I am off to bed to read till my mind shuts down for the day.
love and light