Wednesday, June 10, 2015

Day +7

Ugh. I could just post that tonight and it would sum up my day. I feel like crap. My blood counts are still bottomed out, but didn't decrease a whole lot today, so I guess that's something. I decided to try one more day without a transfusion; the doctors are very open to me not having one, but I have to be able to keep walking and I am starting to get tunnel vision if I take too many laps. So, they want me walking, but would also like to see my counts pull themselves up. We'll see what happens. Little aches and pains feel so magnified and movement of any kind takes such a huge amount of motivation and will.

Jen spent the entire day with me today. Colten took Rora to Lagoon and made yet another trip back to Pocatello. It was really nice to just sit with my sister. I haven't been able to do it in such a long time. We talked. We walked. I slept. She crocheted. And we spent the majority of the day watching Last Man Standing and laughing our heads off (note: if you have not watched this show, it is hilarious). It was really nice. Tina stopped in just to see how I was doing. I waved to Katie in the hall. And, most miraculous of all, an aide I met only a couple days ago (Jada) stopped in to give me a necklace from another patient. Jada is one of those incredibly spunky, vibrant personalities that you can almost only handle in small amounts because she is just SO happy. She took care of me the other day and found out that I like crystals, commented that another patient on the floor makes jewelry out of crystals, proceeded to go get some and show me, and then bounced into my room today, pulled a necklace out of her pocket, and said, "It's from both of us!" I almost cried at the completely unexpected gesture. We had really hardly talked at all, but she thought of me. We need more people like this in the world.

So today was good. But this is the worst part of the transplant for me. There is nothing to do but sit and wait. The "worst" parts are really over. Yes, I could get GVHD down the road, but I am confident I will be fine. Yes, I could get some sort of infection, but if I am careful, exercising my lungs, and taking all my medications, that is unlikely, too. The biggest worry was whether the acute onset GVHD I already went through with the fevers could be halted or not. For some people, it can't. Mine was, so the only thing left now is to get the stupid blood counts up so that I can finally leave this hospital room. It's so aggravating to sit all day and know there is nothing I can do but eat and move. I've tried meditating; I've tried imagining all the little cells in my body and commanding them in my most fearsome mind-voice to start working already, but all to no avail. It's like they can't hear me or something.

So I wait. And every morning the first thing I ask my nurse is how my labs are doing. I know one day she will tell me that they are improving, but I am already getting tired of the downcast eyes, slight pursing of the lips, and intake of breath that all proceed, "Well, they are still down for now, but it's not unexpected..." My day will come. Slowly. Maybe in five years. At some point. It HAS to. My day will come. When I walked with Jen today, we stopped to look at some boards in one of the hallways that patients and loved ones can write encouraging words on. One person wrote, "When life gives you lemonade, make orange juice and make them wonder how you did it." I love this. I am going to make some orange juice, and these counts are going to start coming up instead of doing the "expected." Let's face it, being normal isn't really my thing. And, Darren is back tonight (wearing heeled shoes, I kid you not), so maybe I can get some citrus in his eye. :-) What sort of juice will you make? 


  1. Chocolate! Yes I know that's not a juice but that's what popped into my head. Remind me sometime and I'll tell you why. Love you!

  2. I heard that pomegranate is good for you, maybe I'll try that! Love your sense of humor, somewhat perverted like your grandma's, but hey, we have fun, right??? Praying for those stubborn cells to start kicking in and building up.

  3. Hope the orange juice helped your blood counts begin the upward climb today.