The Wait

That's Brennan ... yesterday.  He lined up the bears himself and sat between them ... himself.  He's so darn awesome.

I had the CT scan yesterday.  It wasn't a fun experience, but it's over and we are waiting for results... and waiting and waiting.  As I told Eric yesterday, if the Hodge is back, we'll be OK.  If the Hodge is not back, we'll be VERY OK.

Something I discovered recently:

A new drug - Adcetris or SGN-35 - was FDA approved for recurrent and relapsed Hodgkins in Aug or Sept of 2011 (that I knew).  This is the first FDA-approved treatment for the Hodge since 1977.  It is currently being studied as a front-line drug used in conjunction with AVD (3 of the 4 chemo drugs given to me).  The initial results are that 97% of interim PETs (after two months of chemo) were clean. (I read that right now the percent is 70-80% but that seems low to me depending on stage)  The possibilities of this new drug are very exciting.

My shoulder is very sore ... only on the side of my body touched by the Hodge.  I feel it as I write.  My jaw and neck are also very sore (It's impossible for the Hodge to be in the jaw; there are lymphnodes under the jaw but not in it.)  If the CT is clean, why do I have this soreness?  I can explain the soreness at the old tumor sites.   Hodge patients have soreness at old tumor sites.  No the oncologist didn't tell me this; my fellow patients did.  More on this later.  It's caused by scar tissue, chemo doing damage to the lymphnodes, and the way the disease grew in my nodes (Nodular Sclerosing HL).  Fine .. I have no problem with a little soreness; I can live with it the rest of my long life if need be.  Why is my jaw sore? Why is my neck sore?   hmmmmm... good question.

I just found out today that a few of my friends touched by the Hodge have read my blog and were helped by my blog.  This is a very big deal.  We all or most of us want to be helpful to other people, but to be told that we have succeeded at being helpful makes the bird's sing and the grass grow.  What an amazing feeling!  I love all my friends touched by the Hodge and will pray for continued happiness in your lives.

I think I say "the Hodge" 1,246 times in this blog.  Doesn't it sound cool?