Monday, July 29, 2013

2013: Part 2

How It’s Been So Far

I never got stronger in 2012, although I loved our two big road trips in March and May.  I also made it to Big Island; and I spent Friday of Labor Day weekend going from swimming in the ocean by the Mauna Kea Hotel to watching the sun set and the full BLUE moon rise from somewhere above 10K' on Mauna Kea itself. 

I could tell the decline in my strength as I swam and snorkeled, and one day I barely succeeded in pulling myself out of the sea at Two Steps.  Argh!  I ended up coming home in a wheelchair, and had to walk with assistance thereafter. 

Unknown to us, my body had started shutting down.  In September, digestion was stopping.   We noticed my singing voice was weak in March, was totally not right in May, worked in October, and then . . . went away completely.  I have even been unable to sing along with the radio.  Frustrating!

So not only did I not do as well as I'd have liked in 2012, 2013 was starting off TOUGH. 

January's tests revealed cancer still in my brain and spine, and by February my body was sliding into end stage.  High heart rate and low BP, high tumor markers, cachexia, choking, an inability to swallow or breathe properly, and so forth.  At one point, my legs and feet were purple.  I looked near death, and everyone was so worried and stressed, especially during the lengthy episodes where I couldn't breathe.  It became obvious my autonomic systems were not working properly.  We’ve spent from February on dealing with that.

By April, I could no longer walk far with my walker, and we bought a wheelchair.  I’ve had to use it ever since, except for the short walk to the bathroom (for which my walker suffices).  So 2013 so far has been spent on the sofa for me.  It’s boring; I’d rather be hiking.

And that's how it went when I wasn't here blogging!

Thursday, July 11, 2013

2013, Part 1: Hello Again

It has now been more than 3 years since I was diagnosed with leptomeningeal carcinomatosis (LM). I know other LM patients and caretakers watch this blog, and I wish I'd been able to keep up with it this past year. I've only been able to focus on the most basics of living . . . getting to appointments and doing all we can to keep my body and my brain going. We've had to deal with A LOT of symptoms; I've not had remission.

I was further frustrated by changes made last May to blogger's software. It's getting harder for my brain to keep up or do multiple steps. It's not dissimilar to how we might feel after a couple of margaritas – I'd rather relax that try to do “work” tasks with my brain. I'm learning to be still.

I'm going to try to work around the problem(s) by handwriting my entries and getting help with getting them posted.

We'll see if that works. For now, know that I am still alive, still here, still going! hfh