How it feels

Saturday November 3, 2012
Salt Springs National Recreation Area
Site 81

 

 

  *This post is directly related to the previous one Update on David.  If you have not read that one, this one might make more sense if you read that one first.  You can use the link above or this one.

 

This has been the year from hell for us and it’s not over.  I am exhausted from it.  The out of the blue diagnosis of a terminal illness in a man who looked to be in perfect health and was extremely active, the horrible treatments, the scary stem cell transplant, the hospital of horrors in Pennsylvania, the cleaning out of my father’s house, his financial mess which came at the worst possible time and that I’ve hardly even begun to straighten out and now the death knell for the dream.

It all seems like too much and so unfair. We retired early and took the financial risks only to find that now we can’t do any of the things we wanted to do.  We can’t spend the summer in New England and the Maritimes or in Washington and Oregon or in Alaska.  We can’t return to Yellowstone or go back to Glacier and do the things cut short by my broken ankle in 2011.

Yes we can travel around in Florida during the winter.  We left Virginia precisely because the summers are so hot and humid.  It isn’t a place you can do much of anything outside unless you are at the beach which is 3 hours from his doctor.  

Someone commented about yesterday’s update that it could be worse, we could be in North Dakota or Oklahoma.  But obviously we wouldn’t be in North Dakota or Oklahoma for any kind of treatment for this disease.  I know you all are just trying to make us feel better but sometimes that makes folks feel unheard.  Try instead imagining yourself in the position of being on the road full time and having done everything to make that happen and then being told, sorry you can’t go more than one week’s drive away from your former home and you can only stay 2 weeks and then you have to come back.   Would you still full time??

What is the point of full timing?  For us and I thought most folks, the whole point is the FREEDOM to go everywhere and anywhere you want on your own schedule.  As slowly or quickly as YOU want. 

David is feeling stronger and stronger.  I believe he will be physically able to travel and to possibly do most of the things he did before at least for a couple of years.  But time is truly running out.  That’s not just a philosophical statement.

It isn’t that his treatments aren’t available from most hematologists all around the country.  It’s that we have a system that is based on money and not on care and we can’t afford to pay a different hematologist every month for an initial visit.  No doctor will see you without one and no insurance company will pay for multiples.

Yes I’m feeling pretty sorry for us but things are looking pretty darn bleak in terms of our dream.  There is no comment anyone can really make on all of this except to say they are sorry about it.  I don’t mean to be crabby.  I know you are all sorry and your concern for us over all this time has been unbelievable.  But there’s not much cheer in this. 

I’ve been struggling through the last few days about whether to put this on the blog.  But it is honestly how I feel.  I’m broken hearted.  They told us we’d get our life back at least for a while but after all we’ve been through, we won’t.  After all he’s been through, he won’t.   David won’t, it appears, ever get back the life he retired early to have.