When we found out I had metastases to my brain a friend honestly asked if I was going to call it, I told her no, I am not throwing in the towel just yet – and she didn’t mean it in a bad way. If you see me on bad days you may understand why this could be a consideration – when do we call “it?”
For me that will be when I am no longer enjoying life. In the meantime, I will ride the roller coaster, even if there are days I am screaming into my pillow that I want off this ride. The tears in the corners of my husband’s eyes are enough to keep me going on a hard day.
There are a number of women that actually live longer than the median for brain metastases, so we still never know on these things.
This week I got the notification from my long term disability company that they want me to go ahead and apply for social security already. This is normal, they usually only want to supplement what social security won’t pay – plus I think if social security deems you not disabled, they have an “out.” Good ‘ol cheapos.
I spend my daytime surrounded by stacks of paperwork. Life insurance, insurance, getting ready to work on my will, trust, power of attorney… all of that stuff that I don’t want to do, but I should be responsible and do. Trying to keep track of all of this paperwork and remembering what to get sent in to where, on time, is taxing. Not to mention my nonstop calling of everybody to see if we have made progress on getting me scheduled for the SRS procedure. It looks like my CT scan is scheduled for the 5th of November and the radiation will be on the 11th. I am so worried that more tumors will have popped up by then. I need to take a deep breath. *ohm*
Up until my recent brain metastases I had been doing a little work for my company from home. I am having a really hard concentrating with current stress, I even wonder if I can pull that off. I had known that full time work for me doing the job I had done for years was no longer an option, which is why I had packed up my desk and gone into long term disability. Now it looks like this is 100% my path, the life of a social security disability lady.
Which is mostly ok. I need the rest I am getting, I like being able to spend my time and energy that I have on advocacy for metastatic breast cancer research and awareness. Cancer is a full time job and I do need to get my stress level back down so I can start living again! We have started to tackle my list, so expect some progress on that again. <3
I also had the wonderful privilege of being on Al Jazeera to discuss Pinktober, breast cancer research and awareness (and talk a little about my breast cancer blog) watch here: