Trash cans
14/06/10 19:10
In reading over my former blog posts, I realize that I give the impression that I’m some sad and lonely workaholic who just so happens to be crazy about science, and whose life is empty, otherwise. I AM crazy about science, or crazy WITH science, like an intoxicating potion, but all of the rest is wrong.
I told my daughter, a while back, that I loved trash cans. She thought that was really funny. I guess it is a bit funny, but let me tell you about trash cans, before you think I’m nuts—
When you can crumple something up in your hands, and throw it in the trash can, you are done with it. I like that. I truly enjoy throwing things into the trash can because that means I am done with it. It’s processed, stored, or just dealt with, and I don’t have to look at it again. It’s ACCOMPLISHED. That’s the main thing that I like. Throwing something into the trash can means that something has been accomplished. And I’m hooked on that feeling of accomplishment equally as much as I’m hooked on science.
You guys read my sad musings about my lost son, and I wonder if you might think that I am just walking around, hoping for rain. to hide my perpetual and everlasting tears. I’m not. And it’s not that I’m NOT sad about losing my son, or the suffering that he had to go through before he left this earthly plane of existence. I AM. But, like I told you before, pain comes in waves. They wash over you, and then, for a while, they are gone.
When they are washing over me, this blog is an outlet to get them out. Those posts are really hard for me to write, for some reason. The guy who posts my blog posts for me is forever getting requests from me not to post those posts yet, so that I can edit them, once again. I’d probably be editing forever if he didn’t stop me and just post the damn things.
I think that it’s important to write them, though. And, most of all, I want them OUT. I will never be able to crumple them up and put them in the proverbial trash can, but I can’t let them “cook” inside of me. But the reason that I want to edit them over and over again, is because I view this blog as something that serves hope, not despair. And, my CF family, I do not want you to take any sadness from my posts. I want you to have only hope. You have every reason in the world to justify much hope.
There are quite a few people taking BITC now. (I will say, here and now, that I hope that every one of them are using it under their doctor’s supervision.) Those taking it orally are experiencing the typical changes in fat content of their stools and they are, of course, able to lower their enzymes, in response to the effects of BITC on their pancreas. This is to be expected; it’s not something that we haven’t seen before. We are currently working on a website that these people can log on to anonymously, and that will chart certain indices, such as color and amount of stools, mucus production, etc. And there are some who are just beginning to use BITC transdermally. So far, so good.
It is difficult to report on any numbers, at this point. We don’t have the ability to do the lab tests, to get the numbers, and since so many have just started their use of BITC, not enough time has passed to get any lab reports from their doctors yet. And, the results of the carrier testing will not be out until mid-July. So, we are waiting.
As soon as I know, you will know. That’s a promise. So far, we’ve only seen the effects of transdermal BITC in one person. And one person does not prove anything at all, of course, but it gives us much to hope for. The one thing that I really like about it is that a CF patient over twenty years old has blown a lung function score of over 130%. It’s a regression back to over five years ago for this guy, in terms of lung function. I want that. I wanted it for my son, and I want it for the older CF patients now. And it’s what should happen, if you are able to replace the non-functioning CFTR protein with a functionally redundant protein, like the MRP2.
In the meantime, let me finish up by telling you that I am not some sad and lonely woman with no life. I have a beautiful and loving daughter, Penny, and a world-shaking miracle of a granddaughter, Aera Bella. When I am not doing this work, I have a growing business and career. I have a big sprawling family that I am honored to love and to have in my life. And, I have you, my CF family, and this work. In the little bit of spare time that I have left, I study physics and I paint oil paintings.
My life is full. It is only my heart that has a hole in it.
I told my daughter, a while back, that I loved trash cans. She thought that was really funny. I guess it is a bit funny, but let me tell you about trash cans, before you think I’m nuts—
When you can crumple something up in your hands, and throw it in the trash can, you are done with it. I like that. I truly enjoy throwing things into the trash can because that means I am done with it. It’s processed, stored, or just dealt with, and I don’t have to look at it again. It’s ACCOMPLISHED. That’s the main thing that I like. Throwing something into the trash can means that something has been accomplished. And I’m hooked on that feeling of accomplishment equally as much as I’m hooked on science.
You guys read my sad musings about my lost son, and I wonder if you might think that I am just walking around, hoping for rain. to hide my perpetual and everlasting tears. I’m not. And it’s not that I’m NOT sad about losing my son, or the suffering that he had to go through before he left this earthly plane of existence. I AM. But, like I told you before, pain comes in waves. They wash over you, and then, for a while, they are gone.
When they are washing over me, this blog is an outlet to get them out. Those posts are really hard for me to write, for some reason. The guy who posts my blog posts for me is forever getting requests from me not to post those posts yet, so that I can edit them, once again. I’d probably be editing forever if he didn’t stop me and just post the damn things.
I think that it’s important to write them, though. And, most of all, I want them OUT. I will never be able to crumple them up and put them in the proverbial trash can, but I can’t let them “cook” inside of me. But the reason that I want to edit them over and over again, is because I view this blog as something that serves hope, not despair. And, my CF family, I do not want you to take any sadness from my posts. I want you to have only hope. You have every reason in the world to justify much hope.
There are quite a few people taking BITC now. (I will say, here and now, that I hope that every one of them are using it under their doctor’s supervision.) Those taking it orally are experiencing the typical changes in fat content of their stools and they are, of course, able to lower their enzymes, in response to the effects of BITC on their pancreas. This is to be expected; it’s not something that we haven’t seen before. We are currently working on a website that these people can log on to anonymously, and that will chart certain indices, such as color and amount of stools, mucus production, etc. And there are some who are just beginning to use BITC transdermally. So far, so good.
It is difficult to report on any numbers, at this point. We don’t have the ability to do the lab tests, to get the numbers, and since so many have just started their use of BITC, not enough time has passed to get any lab reports from their doctors yet. And, the results of the carrier testing will not be out until mid-July. So, we are waiting.
As soon as I know, you will know. That’s a promise. So far, we’ve only seen the effects of transdermal BITC in one person. And one person does not prove anything at all, of course, but it gives us much to hope for. The one thing that I really like about it is that a CF patient over twenty years old has blown a lung function score of over 130%. It’s a regression back to over five years ago for this guy, in terms of lung function. I want that. I wanted it for my son, and I want it for the older CF patients now. And it’s what should happen, if you are able to replace the non-functioning CFTR protein with a functionally redundant protein, like the MRP2.
In the meantime, let me finish up by telling you that I am not some sad and lonely woman with no life. I have a beautiful and loving daughter, Penny, and a world-shaking miracle of a granddaughter, Aera Bella. When I am not doing this work, I have a growing business and career. I have a big sprawling family that I am honored to love and to have in my life. And, I have you, my CF family, and this work. In the little bit of spare time that I have left, I study physics and I paint oil paintings.
My life is full. It is only my heart that has a hole in it.