Sometimes a little information is power – sometimes a little bit is way too much.
Everyday I get a “digest” type email from a GIST support list serve. I scan it to see if anything is interesting – if there are new clinical trials (just in case) or if someone else on Nexavar has news or questions.
Today I saw a post from a woman who started Nexavar about the same time I did. We’ve shared good scan news over the last 20 or so months. I clicked on it knowing she’d be having a scan soon. She did. The Nexavar is no longer working for her. She has tumor growth and will be changing drugs again.
Despite thinking I was tough after all this time, my already slightly elevated scanxiety skyrocketed.
Then I got to thinking about the other person who started the drug that same month so I did a name search. He passed away a few months ago.
I started frantically cleaning and harping at my family over absolutely nothing. Well not nothing, but nothing I could share with the girls around.
The oldest had left just before that to go sell ads for the school newspaper. SG has since taken the other 2 to run some errands. So here I sit while my brain goes into overdrive.
I know they aren’t me, that our bodies don’t react to drugs in the same way. But they are me. They are going through the same things at the same time, all the while fearing the worst with each scan. One of them has already left loved ones behind.
The other is heading into the great unknown of the next treatment.
With each scan, part of me wishes to be off this brutal drug while the other part is terrified of going off one that works.
The devil you know is better than the one you don’t right?
This may be easier if I had been feeling better the last week or so. I’ve been blaming it on eating stupid holiday foods. That’s the reason it’s uncomfortable sitting very long.
It’s NOT like spring 2010 when the tumor between my stomach and spine made sitting difficult. Or summer 2009 when the one low in my pelvis combined with the ones under my rib cage caused pressure with every movement.
I’m sure of that in some parts of my mind, while others grab onto the failure of the drug for others and run rampant.
These are the days I hate. The ones full of doubt. The ones that make me wonder what I need to get done before….
Before another surgery.
Before another drug failure.
Before I just don’t get the chance.
I’m sorry to come back to blogging just in time to panic on you all but I don’t know where else to put all this.
I need sunshine and a walk – and a clean scan.