Had another round of blood tests today. Last week I mentioned that my tests showed that I have host/graft disease of the liver, and I was a little bummed out by it (even though the doctors were hoping for some because it is good in the long run). Instead of lasting the 2 months that it was expected to last, it appears to be completely gone. My liver (and kidney) functions are testing completely normal.
The last issue that I have is that my white blood cell count is still lower than we hoped for. It is not a cause of serious concern at this point, there are a number of things that the doctors are going to try that might help my counts come up, and there is pretty good chance that the structure of my marrow (the stroma) has been damaged by the treatments in such a way that it is simply going to take a long time for it to heal correctly before my new bone marrow will be able to make lots of white blood cells.
And, of course, I am still on high immune suppressants, and the combination of immune suppressants and low white blood cell counts means that I still in a high-risk part of my treatment. So I am continuing to be vigilant with bacteria, virus, and fungus precautions.
I have been feeling quite a bit better this week (it might just be the massive amount of steroids that they have me on). It might also be that spring has finally reached Vermont, and I have been going for nearly daily walks in a nearby woodland park. Walking in the woods has always done so much to sooth my anxieties and heal my soul.
I have to remember though, that despite feeling better, I have practically no immune system. I don't have to wear my filter mask in the woods, but I can not touch any wood or soil. I put my mask on if I can see people or pets. I have to put my mask on if I catch any scent of manure or woodsmoke. I have to be vigilant about washing my hands and face, washing my food, including things like the outsides of oranges and cans.
The odd thing, I think, is that there is no real correlation between how I am feeling and how strong my immune system is. I have always tended to imagine that the better I felt, the stronger my immune system was, and the less I had to worry about getting sick. But now, there is no relationship. I can only go by the blood tests and see if my neutrophils have gone up or down or stayed the same.
Anyway, things are looking nearly as good as could be hoped for - good enough that I might be able to skip one of my bone marrow biopsies! And there is a good chance that Becky and I will be able to move back to Maine within a month or so.
The last issue that I have is that my white blood cell count is still lower than we hoped for. It is not a cause of serious concern at this point, there are a number of things that the doctors are going to try that might help my counts come up, and there is pretty good chance that the structure of my marrow (the stroma) has been damaged by the treatments in such a way that it is simply going to take a long time for it to heal correctly before my new bone marrow will be able to make lots of white blood cells.
And, of course, I am still on high immune suppressants, and the combination of immune suppressants and low white blood cell counts means that I still in a high-risk part of my treatment. So I am continuing to be vigilant with bacteria, virus, and fungus precautions.
I have been feeling quite a bit better this week (it might just be the massive amount of steroids that they have me on). It might also be that spring has finally reached Vermont, and I have been going for nearly daily walks in a nearby woodland park. Walking in the woods has always done so much to sooth my anxieties and heal my soul.
I have to remember though, that despite feeling better, I have practically no immune system. I don't have to wear my filter mask in the woods, but I can not touch any wood or soil. I put my mask on if I can see people or pets. I have to put my mask on if I catch any scent of manure or woodsmoke. I have to be vigilant about washing my hands and face, washing my food, including things like the outsides of oranges and cans.
The odd thing, I think, is that there is no real correlation between how I am feeling and how strong my immune system is. I have always tended to imagine that the better I felt, the stronger my immune system was, and the less I had to worry about getting sick. But now, there is no relationship. I can only go by the blood tests and see if my neutrophils have gone up or down or stayed the same.
Anyway, things are looking nearly as good as could be hoped for - good enough that I might be able to skip one of my bone marrow biopsies! And there is a good chance that Becky and I will be able to move back to Maine within a month or so.
You may not feel much progress on the ground, but for those of us separated by time and space, there is astounding progress every time I look. Especially given the risks, from here it looks like you're slogging through hip deep mud in the fog with bionic assist, sonar, and night vision goggles.
ReplyDeleteThanks Mike, I needed that. :)
DeleteJust as I was wrapping my head around the concept that graft vs. host disease was a good thing comes this great news that you are all over that stage of things. I think walking in the woods is as good for body and it is for spirit.
ReplyDeleteI know! It was very good news, really the best of all possible cases. I got a little bit of graft/host, so I am safer from relapse, and it only lasted a week. I tell you, I don't mind catching a break. :)
DeleteAh, such great news about the graft/host disease and so nice that you can be in the woods. Still makes my head spin to think of all you've been through this year and all that you're still dealing with. Thank-you so much for sharing what's been going on. I so admire your perseverance.
ReplyDeleteAnd HAPPY BIRTHDAY today, April 23!!!!
By the way, further congratulations are in order--now that a few days have passed since your last post, you're more than 75% through the super dangerous first 100 days post transplant! YAY!! Keep taking the most excellent care of yourself that you can--I'm so inspired by your tenacious dedication to life and health that has gotten you this far. Massive congratulations!!!
ReplyDelete