2/10/2014

No treatment last Friday, due to my white blood cell/neutrophil counts being too low. So I got a shot of Neupogen in the stomach and was off to work. I'll be getting treatment on Wednesday, as long as labs are good.

And there was some "good" news. Dr. Hurwitz, after consulting with my KU Med docs and an oncologist in Nebraska, decided that we aren't going to try Doxorubicin again. Ever. The risks outweigh the benefits at this point (it's tough on the heart, and I've already had quite a few doses from the first go-around) and after the reaction I had, it was agreed that we would just drop it. The other two chemo drugs, the Gemzar and Navelbine, seem to be working to shrink the tumors. So, yay! No more of the nasty red stuff!

This also means that we can up the doses of the other two drugs, since we're dropping the third. This will no doubt make me feel even crappier than usual, but I've already cut back my hours at work in preparation. I just can't do 40 hours anymore. I've been trying so hard to tough it out, but at this point, I'm having trouble getting through my shifts, and I feel like I'm becoming a burden to my co-workers. (Though they're super supportive and would never admit it.)

Since I didn't get chemo Friday, this was the first weekend in a while that I felt almost decent. I went out to Target and bought some cheap shirts that I can wear in Kansas City (stretchy neck, so we can pull it down a bit and easily access the tri-fusion catheter.) But I over-did it. Trying on clothes is so exhausting... arms up and over the head, putting shirts on and taking them off, stepping in and out of pants... I definitely spent the rest of the day snuggled on the couch with Jazz, trying not to move too much.

On Sunday, we had family pictures done. They turned out very well. I know it's morbid, but it's nice to have some pictures of all of us, just in case something were to happen to me. And it was nice to get pictures while I still have all this hair! This is one of my favorites:

I'm still waiting to hear back about disability and insurance. I've filled out all of the paperwork, sent in all of the information they might need. I have nightly panic attacks about it all. I try to breathe, to stay calm. Eventually I give in and take a tiny dose of Lorazepam.

I'm so scared that I won't be able to get this transplant in time. I feel a clock ticking.

I feel like I'm running out of time.


I take a deep breath. I repeat to myself:

"You are a child of the universe,
  no less than the trees and the stars;
  you have a right to be here.
  And whether or not it is clear to you,
  no doubt the universe is unfolding as it should."