Monday, November 11, 2013

Our current 'needs': cheap therapy, clean socks and a cryogenic freezer.

I haven’t been writing much.
Perhaps I should rephrase that.  I have been writing a whole bunch, but I haven’t been writing for me  writing as therapy, which is what this really is, in case you haven’t figured it out yet.  I write to sort my thoughts, to direct my actions, to ground me, to explain to others what this crazy cancer journey is like, and, in all hopes, to help others who find themselves in similar straits.  Mostly, though, if I get thoughts out of my head and put them down in words…well, I can better manage it all.

This is not to say that I am ‘not managing’, exactly, but I do have a whole lot swimming about in my noggin these days.  I have a whole lot on my ‘to do’ list. And I have a whole lot more that I want to add to it, which even I can recognize, would be pretty foolish and hugely unproductive at this point. 
I have been reading.  I have been meeting with researchers.  I am excited by the things that I am learning.  I am astounded at what they have figured out and hopeful about what we do not yet know, but might soon discover.  The rapid exchange of information and the exponential increase in the rate of learning are most encouraging to me.   We have long established that patience is not my strongest suit, so this is all a very good thing. 

I have long been dreaming of having a cryogenic freezer in my basement, in case you are looking for Christmas gift ideas.  Hunting down tumor and tissue samples, beating institutional bureaucracy and sending these samples to researchers are all pretty time consuming.  If I had our various tumors and tissues stored right here in the convenience of my own basement, I am thinking that I could just call Fed Ex and be done with it.   Yes, the fantasies run a bit different these days.  And the Ramers are something of a freak show.
I have also been sorting through some domestic things, most of which is not nearly as interesting as what is coming out of the scientific community, but hugely necessary, in a ‘we need clean socks’ sort of way.  I really am grateful for the opportunity to devote my time in such a manner.  The luxury of waking up in my own bed, with all of my children sleeping down the hall is not something that I take for granted.  Also, we have really enjoyed doing some things together as a family, realigning and reconnecting.

Clean socks, well, we shouldn’t take those for granted in this house either.
In many ways, I am still trying to ‘get it together,’ and it is already mid-November.   As I look at it, it is probably too late to get on top of some things, but still far too early to scrap it all and say “Next school year…”  I might not be putting out large medical fires (most gratefully!) but I can pretty much guarantee that I will still be taken by surprise for parent teacher conferences or some other school function that I probably should already know about.   Never mind about the various forms and deadlines, which I will openly admit that am appalling bad about.  In this regard, I am still trying to catch up.  I am most fortunate to have lovely friends who remind (read: inform) me of essential meetings.  It does take a village, apparently. 

Because, I have just been buried.  I am happy to report about our trip to MSKCC earlier this week particularly because New York had good things to offer:  Brent starts physical therapy on Thursday.  May we remain on this path of healing and strengthening.  It has certainly been a long time in coming.  Glory Be!
Whenever I get overwhelmed, I go back to making lists, and crossing things off.  This week, my medical list got pared down from ridiculous to somewhat reasonable, by Ramer standards.  So, now I can focus on the business of trying to run a household with four children in it.  That list is now ridiculous, and, as I have stated, I don’t even know everything that should be on it.  Maybe I will just start with groceries and bedtime stories.

And clean socks.
Boring is beautiful, and not just on scan days.  But, if I had to pick, I would take 'boring' on scan days, every single time. The rest is easy.  Or at least a hell of a lot easier.  And recognizing that fact, the focus on it, this will get me through.

1 comment:

  1. I love this........Running With Angels mom.