Thursday, October 7, 2010

ramblings and rantings of a semi sane fool

      This, a good morning the coffee hot, black as Satan's heart, and  scotch  a damn fine creamer. Yesterday got word from SSI disability that i need to see their doctors, apparently Duke, Ashville, University of Kentucky medical and West La medical  aren't enough. So more tests, the same tests and explaining to yet another man , person of  medicine what my illness is.
    The fucked thing about a rare disease is most of the people have not dealt with this since medical school. They call LCH a orphans disease, when I first heard this I thought of Oliver Twist " Please sir, I want some more." In the place of porridge I'd like some treatment.Orphans disease translation-  few have this, sorry, you are fucked. There is an option - I'm still waiting for approval from the VA for a trial at the Mayo Clinic. Great place for this thing. They have actually cured a few people, slowed the progress in others , back tracked it a bit  in a few, and not "that" many died. Fucked thing this is hope and hope is good. Fighting is great and beating the odds amazing. I remember when I first heard of 2- CDA chemo and its  promising potential I had a mild anxiety attache. I owe the IRS 120 G's and will never have the gigs I once had to get out from under the debt. Then , I laughed and thought.... Quality problem.
    So, now I pray to be allowed to spend six months in Rochester, MN during the winter (-20) doing chemo. I remember once praying for things like, her or it. Whether  it was a shinny new bike,a Oscar, Twu-lub, Stephani Palmer in high school or Julie Burns is kindergarten (many, MANY, far too many others), and a gnome that would magically do my home work. Funny thing, I do not pray for the Mayo Clinic, or healing, or any of the things I maybe should be. Instead I pray to be a better man- to live with dignity, to be less selfish, zero tolerance for the why mes or not fairs,and more man of the moment. Try and fail try and try and try. This is what it is.


  1. Hey George... What is $120,000 dollars but a small down payment on a surfers shack fixer-upper in Santa Cruz or Huntington Beach (that go for about $945,000). If you need to get it paid it will be the easiest thing you will have done after beating this disease.
    Hang in and keep writing.

  2. I sure wish I had it because you would already have been and would be back on the West coast hanging on the beach with all our California gurls (daisy dukes and bikinis on top!)
    Keep on writing too. I love it because it is so raw and real.

  3. Jruneare and Todd? are you friends still out here? been trying to catch up... i have grand news and would love to share it. Looks like me and momma to the bay area soon... just need some advice LG