joyous and unexpected: life

This morning at 3:00am I took my first shower in over a week. It was glorious, and all that jazz hooray stuff. Boy oh boy did I need that.

Celebrating the last of my hair, before it goes buzz either today or tomorrow. Stay posted, pictures will be taken of the process, we ain’t doin’ it the normal way. (hint: if dubstep had a hairdo, this is what I’m doing first)

No fevers in over two nights! That’s a lot of hours without fevers knock on wood. Either from good fortune or all the steroids they put me on…Why steroids? Well a couple days ago (one day? they roll together, I'm telling you) I had a fever of 105, the heights of which my nurse had never seen in a patient before. It was unresponsive to Tylenol, ice packs literally on my skin, and didn't really pass 103 (on the way down) until a straight up ice-bath, which I actually didn’t mind much because I was so hot. They also have this nifty cooling blanket (oxymoron) that goes under your body while you lie in bed, which I also loved. Apparently no one loves either of these things, but then again, not many people have a fever of 105 and feel like they’re on fire.

another thing to add to the list about checking into the Brig:

- get to see what my full eyes brows look like

first two pieces of mail in the hospital!

if sending me snail mail via is something you’d like to do, here’s the address that seems to work well! 2/2!

Rebekah Jordan

7b-40

Brigham and Women’s Hospital

75 Francis St.

Boston, MA 02115

In other news, this kind not as nice. I could only find one other CMML patient blog (it's pretty rare version of leukemia, so it was hard to come by), and I found out this morning via checking in that he has passed away. He was over 65 I believe, and suffered from major complications of GvHD post-transplant. I know this isn't my story, but I grieve for him. He was a funny writer, his name was Boone.  He wrote a lot about the food he was eating and the foods he loved, his daily doings. What a hero. I'm trying to stay positive and keep the fight. It's hard to receive news like this, though I know things like this will always happen in life. Life is not always a joyride, it is the unexpected. and sometimes the unexpected is joy, sometimes sorrow. It brings back the reality to the stark front. This is a disease, and there are no guarantees. It's dangerous. It's scary, it's the unexpected. I will live a good day today in memory of Boone. I hold tears in my eyes as I write this, but I know that this path is laid before me, and I must walk it all the same. So might as well be as brave and fearless as I possibly can, in spite of all setbacks.

I've been thinking a lot about Rilke's line that I keep repeating: 

Let everything happen to you: beauty and terror.

And I think that on some counts this sounds like a passive way to live one's life.

But I think that rather than passively letting life mow you into the ground, as it could suggest, or be blown around like a leaf in the wind, I think it still means you go to bat. You go to bat for some of these things, and you just swing at whatever is pitched your way.