Saturday, November 01, 2008

Angry week

This week I am angry.  I am angry at what this disease in my son does to me.... It's not my illness, obviously, but it invades every part of my life.  I am angry at the feelings it brings to me, the "scareds" it delivers sometimes first thing in the morning before my eyes are even open. I can feel myself much more touchy, much more irritable and aggravated as the days get closer to being able to get Steven's PCR results.  I am angry that this disease can and does royally mess up full days at a time and yes, at times when I think of these words we now all live with - cancer and leukemia - at times it takes me to places I just don't want to be.

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


Anonymous said...

I hope you know you're often in my thoughts.

CML Wife said...

I know exactly how you feel, Annie! We have had some normal days over the last few years... Days where you completely forget about leukemia and cancer (except for pills taken that day), but recently we have had far more of the bad days. Tyler is indeed fighting hard against this disease, as I am sure so many others are, but it doesn't seem to be doing any good.

We hope that Steven continues to do well on Gleevec, whether at 400mg or a higher dose, for many years from now. Our thoughts are with you also!

hockeychic said...

I can't even imagine. I have learned so much about leukemia this past year. Adrian and Stephanie have been great teachers and unfortunately they have both passed away. I'm angry and what this disease does, how it affects families and friends and what the people fighting it have to endure.

I finally got over my fear and donated blood today. Already on the bone marrow list. It is stories like your son's that inspired me to take this step.

hockeychic said...

For a CML story, Jason Blake is a player for the Toronto Maple Leafs, he was diagnosed with CML last year. He takes Gleevac and is playing this year on the Leafs and seems to be doing well.