I can't decide which is more amazing: Isaac asleep here right next to me, or that my bone marrow biopsy from yesterday came back today at only 11% blasts which means that all systems are a go. Those two things are neck and neck to me.
Isaac arrived this evening and remains one of the funnest, nicest, kindest, smartest people I've ever met. He brought Union Jack buttons for me to give the nurses. And he brought me chocolate. And he brought me himself. We told Ari that Isaac was going on a class trip. Normally I abhor fibbing to kids. I think it's ridiculous. I think that most of the time there's a way to communicate the truth to them in a way that can be easily absorbed for them at the time. But this was a doozy. "Isaac is going to see mommy and you can't go because you're too little." Blech. It's awful no matter how you slice it. But I'm sure Ari and Andy will have a really nice weekend together.
It's official that I'm going to be admitted on Tuesday to begin this crazy process. It's been SUCH a long wait. Yesterday was a day of tests and conversations. The conversations being harder than the tests. Dr. Giralt's has a few mottos. One is "Prepare for the Worst but Expect the Best", and the other is, "Give me A Year and I'll Give You a Lifetime." The subtext of both is that it's going to be a hell of a year, but it's worth it.
After a long conversation with Dr. Giralt, I signed to join his Clinical Trial. I asked him a ton of questions about it. They really need to rewrite the trial explanation because it is now actually in Phase II. Phase I, the part about deciding the best and safest dosaging has been completed. So now they are looking at this drug combination and seeing if people fair better in the long run after being administered it for the conditioning stage of transplant (which really just means the pre-transplant chemo). He thinks it will give me an extra edge that I could really use. He describes it as being a tough run. Super tired. Yucky mouth sores. Fevers. He was making it sound really bad, I think to scare me a little so that I'd be prepared for the worst. It worked. I'm pretty nervous...But still hoping for the best.
The tests were not so hard. But interesting in some ways. I love those echo-cardiograms because you get to see your heart cheering you on; valves clapping and that constant rhythm of life. Then I took a pulmonary function test. I was a little nervous about it because of having had the fungal pneumonia in March and a chest infection this last round of chemo. What were my lungs really like after all that? I blew into a tube in different ways and then did a short Stairmaster type test. I was afraid to find out how bad things really were. I didn't want to face it, though I was a bit curious too.
It reminded me of when I worked in Adult Literacy. Often, adult students would come to us having no idea what they knew and didn't know about reading and writing and we'd have to find ways to test that so that we'd know where and how to start with someone, what group to have them join. For people who have been navigating the world without reading and/or covering up the fact that they weren't readers, well into their adulthood, this was tough. They were brilliant for being able to do it. And we were asking them to give all that up and face the struggle head-on so they could begin the learning.
I remember one particularly touching evening where I had a brand new student, probably 25 years old. He had a "Certificate of Completion" from the NYC public school system. That's for kids who were pushed through the system year after year, but could not complete the work and were too old to remain in school any longer. I asked him to write something and gave him a few choices of topics I was hoping would be inspiring. He looked at me like I was crazy and said, "But I can't write". I said, "Well, if you get stuck, draw a line and I'll come over and fill in the word for you". He said, "Wow!" and he sat down and wrote almost an entire page of lines, so fast I could hardly keep up with filling them in. It was like he was free. Free to write his story. I typed it up for him and he spent the next few weeks learning to read his own work. It was a really beautiful moment. For me at least...
There's something really good about finding out and admitting where you're at. I hardly ever do it. I want to reach into the future and always be better, do better. But really I have to ask, "Better than what?" If I don't gauge where I'm at somehow, how do I know where to go from there? It's like having an occasional heart-to-heart with yourself. "Where the heck am I at?'
I guess I can write about this because even though this transplant has been such a long time coming, I'm really at square one. I'm beginning something new. I have to accept where I'm at and work with it. I passed my tests so far and it seems I've bought myself a transplant. Lucky Day.
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