Less Hope Not Hopeless

Warning:  This is a tough post.  I usually can spin things to the most positive, but things are rough.  I should also warn you that there may be things that are just TMI, sorry.

So there is a lot to tell and I'll try to keep it relatively concise here.  You want more details, shoot me an email (I can send you the long version).  Went to the ER on Tuesday because I didn't feel like I was completely emptying my bladder.  After a day of scans and sitting around I left with a catheter and the news that my cancer is dotting my spinal cord in so many places they have no idea where to start to try to alleviate my symptoms.  Fast forward a day and the radiation oncologist has been convinced by my medical oncologist to try radiating the spots most likely to be causing my problems.  After talking through the side effects (sore throat and maybe some diarrhea) it seemed like while it may not do anything, the downsides aren't too bad, so we're going ahead.  I will go through a 5 day cycle of radiation treatments to parts of my spine.  Hopefully it does some good.  Good would mean my shoulder will hurt less and I will regain some of the sensation I've lost.  Fingers crossed.

Thursday Keith and I saw my medical oncologist.  It was depressing.  We are getting to the point where  options are getting limited and my cancer is getting aggressive.  First, good news- my body is still clear of cancer.  I had a scan (probably wasteful healthcare spending, but...) on Wednesday and there wasn't evidence of cancer.  The fact is though, there is cancer growing like wildfire in my central nervous system.  It is "studding" my spinal cord in more places than they can count and there is evidence of more growing back in my fucking brain!  Fuck, fuck, fuck!  Now, hopefully the intrathecal chemo will work.... my oncologist isn't really optimistic on that, but it is better than nothing.  Depending on how I'm feeling next week, I'll either get another dose of chemo on Friday or we'll talk about switching to an oral chemo (Xeloda) that shows promise for crossing the blood brain barrier.  The hope at this point is that between radiation and the chemo that we can slow the train down a bit and I can get a rally (or at least slow the onset of symptoms).  Right now I have two main goals; learn how to self catheterize (hopefully happening tomorrow) and stay the fucking hell away from the ER for the next bit. 

Catheter update:  Saturday was a cluster-fuck trying to get my catheter out and get training on intermittent catheterization of myself.  I'm proud to say I took a stand.  The catheter was going to come out yesterday no matter what, and I just kept at it until it did.  You wouldn't believe the trips and turns, but I got it done.  I'm free of the foley catheter, peeing some on my own and doing some self catheterization (strangely simple really - after all the fuss) to make sure I'm emptying everything.  The best part is that I am back walking the dog and taking luxurious soaks in the tub.  There were a lot of folks yesterday who just didn't understand how important it was that I not have to wait until sometime Monday to deal with this.  In the end persistence, determination and some $$ got it done.

I hate to say it, but it is also time for me to seriously get my shit in order.  I don't know quite where to start, but it needs to happen.  The control freak part of me wants to tie up as many little loose ends as possible.  Can't be any harm in being prepared!