We had to switch to a new chemo protocol. The methotrexate that I was going to receive, as part of the B cycle of the Hyper-CVAD protocol, can't be given with antibiotics. My white blood cells were lacking. Going forward with methotrexate would've simply been too dangerous. Now I'm on what is termed a salvage protocol. It is a children's protocol. It lasts for 10 days. However, the hospital stay averages 25 days; that's because you need to wait for your immune system to recover. We'll see what happens.
Today is my one year leukemia anniversary. Leukemia is a bit of a wanker, so I'm not going to wish it a happy birthday or anything like that. However, the leukemia birthday does remind me that time passes quickly. Every day life feels more like a dream and dreams feel like life. I am being pushed, like a pawn, through linear time. This body, my body, possesses a mind aware of past, present, future, and the ending that waits for us all. Though I possess this awareness, I cannot change my course. I am a read-only file system. I have predictive capabilities but no control; I have a false sense of control. What a strange fleeting existence. I love it. No one knows how or when their journey will end. We're all living out our own personal mystery novel. For me, I'm guessing it'll be Colonel Mustard in the study with a lead pipe.
Emily and I had fun at the hospital today. We repeated our Noodles & Co. experience for lunch. Today we brought almost everything needed for a hospital stay. When we arrived at my new hospital room Emily unpacked for me; she is always sweet to me like that. We talked out my concerns for the current round of chemo. It was all very therapeutic. Emily has long been my therapist.
Today has been a good day.
Yesterday was also a good day. There were several visitors. My sister Jennifer stopped by for a few minutes. She was surveying the yard for weed spraying. That's right, Jenny isn't just donating bone marrow, she is spraying my yard for weeds as well. I know, she's awesome. Our friend Becca stopped by with a delicious pesto pizza. It was nice to talk with Becca, I've only had a couple of chances to talk with her in the past year. Elliot, Jessica, and Lily also visited. We celebrated Max's 2222nd day, which was yesterday. Jessica discovered this detail about the day and planned the party. She brought gifts, balloons, party hats, and a cake. It was great. I have a picture of it. Party hats make me look even more ridiculous, you'll see.
Jessica and Elliot have been doing a lot for us, again. They've been supporting us in so many ways. I'm not sure how they do it. Life is too busy. I'm glad they're doing it though. Getting to know them better has been a wonderful opportunity and one that I didn't really consider possible. Everyone seems to run parallel. I must credit cancer for crossing paths in this way. If it weren't for cancer I'd surely just be about my usual business of living. Now life is more enjoyable and rich, cancer is perverse in this way.
On the family front Jonas and Max are doing well. Emily continues to increase daily in beauty, kindness, and intelligence at her average rate. And that's it. I'm going to sleep now.
The picture of the day, Max's 2222 party. You can almost see Jimi on my shirt:
Leukemia is a bit of a wanker really needs to be on a t-shirt or bumper sticker or something.
ReplyDeleteI'm sorry, but Gavin has you beat in the category of "pictures of dudes in hats".
Glad you are on a path for treatment and not getting shuffled around for now!
Yes, I'm maintaining hope that this protocol will get the job done and put me into remission. I do feel odd, though. To be hoping that poisonous chemicals will destroy me in just such a way as to allow me to then have other painful procedures and so on and so forth. I've spent my life carefully plotting to avoiding pain; now I embrace it in hopes of staving off death. Odd, right? It's all about long term quality of life. The trick, which I've not mastered, is to not let pain get in the way of enjoying life.
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