Day 165 - actual leukemia news

It's all very complicated. Back in July (remember back then?) when I had my post induction bone marrow biopsy to prove that my marrow was officially "empty," they sent off a bunch of tests. These tests were prognostic markers of various sorts and John wasn't sure if they would be meaningful because there was not any visible leukemia left (i.e., if they came back with "no marker found," it could be because the marker wasn't there or because there wasn't enough leukemia for it to be seen). The markers are supposed to be run on the first bone marrow biopsy material--the one that the diagnosis comes from--but they didn't for complicated logistical reasons. We knew there was still leukemia even in the "empty" bone marrow biopsy because if you stopped treatment after only induction, the leukemia inevitably comes back; it was just not something we could actually see or identify even with a microscope. The most important test (a marker for badly behaved leukemia) came back negative. Did this mean the leukemia didn't have this marker or did it mean there was no leukemia left to find the marker in? There was no way to find out.

Back in July a different one of them came back positive, but in the general flood of tests and information, it was not noticed. Just recently John was going over my file to present it to the second opinion guy. He noticed that NPM1 was positive. This is a marker that is positive in "wimpy" leukemias, ones that tend to respond well to chemo. This is very exciting news and offers further hope for my not needing to do anything further to get rid of this leukemia and is encouraging for it not returning in the future. Excellent news!

I am still planning on getting a second opinion just because I would much rather do it now and not need it than look back with regret at some point in the future, wishing I had done it. Dr. Hill said he spoke with Dr Stone who agreed to see me and that the Dana Farber will be calling me at some point to set it up. I highly suspect he will say, "thanks for the visit; nothing further needed," but will be glad to have it said.

We checked my labs today. Good, good, good. My hemoglobin is slowly climbing. It is now all the way up to 10. This is the first time in a while that I have been in double digits. I can't say that 10 feels any different from 9.3, but I'm holding out for 12.

I also had a bone marrow done today which (continuing the good NP Beth's streak) did not hurt. She had a very hard time getting in, however and I think I may be sore tomorrow. 

Today's final activity was a CT scan of my chest and darned if it's still not normal! The previous nodules have gone away which is good, but now there is some smutzy stuff that looks kind of like pneumonia except I don't have a fever or a cough. I'm going to get a visit with a pulmonologist to sort it out.

One final thing that happened today that really brought home the whole recovery thing to me. I had to use the bathroom in the cancer center and when I went in, I had a quick little flashback kind of event to the previous time I had used it. I had been feeling very fragile then and decidedly don't feel that way now. What does it feel like to "feel fragile"? Very much on alert, because anyone could knock into me and knock me over and that could be disastrous--the whole world is a low level threat at that point. Very prominent, like everyone can see how fragile and out of the ordinary I am and is staring at me. A little entitled because I am fragile and need extra care or at least caution so back off. Also, slower and more carefully moving because I don't want to make a mistake and fall or bruise myself. And the whole way I experience my body is different. You know how when you were a kid and you were at someplace where you had to be very restrained (church, a particular relative's house, a nursing home). Do you remember how different your body felt when you were there and when you finally got to leave? I always felt like my arms were too long and I moved too much, for example. It is that kind of a feeling except that I felt like I could break easily, like really if I put too much pressure on my arm even, it would crack. It's great to feel more robust.

Today was a really good day; I'm not sure what to wish or hope for for myself. Perhaps today I will use my wish to wish for good health for those who have taken care of me through leukemia travels. I am not sure what you might like for tonight. Perhaps good health for those who have taken care of you at various times in your life?