Wednesday, September 28, 2011

Still Augering In.

Well, yesterday was the suck.  I mean really?!?  My Hemoglobin can "bounce" around from a 6.5 to a 7.7?  Neither being "good", but one somewhat less "BAD" then the other.  I had to do all the "Check again to see if he's still breathing?" crap, and the Nurse Practitioner didn't think that I looked like a 6.5.  I sure felt like one.  And yeah I did go camping with a bunch of Cub Scouts last weekend.  And yeah, I cooked breakfast for the entire crew.  And yeah, I then spent two days working the BB Gun Range at Hunting and Fishing Days.  

So if I can dig deep and do all that on less then half the fucking oxygen of all you medical types, why am I getting worse?  9.6 in hospital three weeks ago, 8.8 two weeks ago, 8.1 last week, and somewhere between 7.7 and 6.5 this week.  Oh, and now there's blood (at least hemoglobin) in my urine.  The steriods have induced diabetes (yes, insulin twice a day.) and now a Blood Transfusion this morning of two maybe three units.  That should make me feel better.  Well, at least like I can breathe.  But this is it. I see the kidney doc next Monday.  If they (and by they I mean all my docs) haven't talked and come up with their recommendations then I'll tell them what the Fucking Plan is.

This shit ends.  No more steroids, no more Cytoxan.  And the stem cell can wait.  I'm not playing my last card on a "Hail Mary" that I don't think will work to save my kidneys. They've been so damaged and destroyed over the course of the last several years that I don't think they'll "recover".  And I'm not willing to take a chance on maybe becoming eligible for a kidney transplant.  You'll have to give me better odds then a "possible maybe".   I'll do dialysis.  I can live with that.  I can do maintenance chemo for as long as it *works*.  "Works" meaning that the Multiple Myeloma doesn't begin to attack any other organs or systems. I'll be anemic, hopefully less edemaic, but I'll be able to live on somewhat my own terms.  

But I'm mad as hell that they did this to me.


  1. I pray that you get to define your own terms. My thoughts are with you.

  2. Thoughts and prayers Scout... Wish there was something we could do...

  3. You're the one that gets to deal with the results of anything they do to you. You set the rules and make it stick.

    God Bless you.