Tuesday, September 20, 2011

Still in Limbo

First I'd like to thank everyone that e-mailed me and/or posted comments.  You have no idea what those mean to me.  Thank you.

Second.  We're still in limbo.  I don't think that the doc up at Mayo has all the facts regarding my kidneys and I think that he thinks that if we do the stem cell "right away" he can either save or restore my kidney function.

I think it's a Hail Mary pass at best.

Since I was diagnosed, I've accepted that I'm on a "glide path".  And when I finished full-on chemo last April, I remember the conversation with the oncologist here.  We had "knocked it down"  I wasn't in remission and I wasn't cured.  There was just "less".  And I could do either no or maintenance chemo.  But either way the disease would come back and at that point "the last arrow in the quiver" would be a stem cell transplant.  Unless they came up with some new treatment in the meantime.  That was it.

From talking with my nephrologist then my kidneys were down to about 30% function and I need to decide whether to go on  hemodialysis and peritoneal dialysis.  I choose peritoneal simply because hemodialysis ties you to going to center every other day for 4-5 hour at a time.  Peritoneal is done at home each night while you sleep.  You simply attach yourself to the machine that's about the size of a pair of shoeboxes and dump the fluids out in the morning.  You can still travel and live your life as long as you have a place to plug in the machine each night.

Other then the anemia, the only real affect that this disease has had on my is my kidneys.  It hasn't impacted any other organs or systems, yet. 

So that was "glide path"  Maintenance Chemo.  I knew I "lose" my kidneys and go on dialysis, but even then as long as "nothing else was going wrong", I'd continue with the Maintenance Chemo until it didn't "work", with "not working" being something else going south.

So I figured that since nothing else appeared to be going wrong, that I would probably be on maintenance chemo for years after I started dialysis.

That all changed last week.  But as I sit here and type, I don't think they shared enough info to give me a good recommendation.  I don't want to rush into something only to be told later "We probably should have held off."   I'm not saying I don't want to do it, but I am saying I'm not willing to gamble with my life.  If losing my kidneys will buy me time, then fine, I'm ready to start dialysis.  If you want to take a chance that it *might* work, but take away a future option, well that's a horse of entirely different color.

I want them to look at all my labs for the past year plus and then give me my alternatives and their recommendation.  So more phone calls and follow ups tomorrow.  Maybe I'll just copy this and e-mail it to my docs.  

Oh, and more Gun stuff in the future.  There's been quite few things that have been going on that I need to get off my chest.  Even some fun stuff.


  1. Still praying for you AND looking forward to the gun posts and other stuff.

    Glad you are keeping us informed. Keep pestering the docs - you have a right to be a thorn in their sides.

  2. What North said. Stay after those Doctors.

  3. Prayers will continue, and standing by as needed.