I’m tired.
I’m very tired.
It’s going to be a long week and it’s only Tuesday.
I don’t think I realize just how much the trips to the NIH take out of a person until I get home. All I’ve wanted to do today is sleep. I’m completely worn out. I’m usually worn out by the time I get to NIH and I return a different sort of worn out.
The trip was full of some good news. First, the mystery lump in my breast is – drum roll please – not cancer. Yahoo! I really didn’t feel it was because I’ve been through this before and it always turns out to be a calcium deposit. But still, there’s always that “what if” lurking in the back of your mind whenever anyone in an all-knowing white coat wants to test something. Had it been cancer I don’t know what we would have done next. It would have affected the drug trial, and since I already have pulmonary fibrosis, I suspect many of the cancer treatment options, like radiation, would have been a bad idea for my lungs. I was afraid I’d find myself in a pick-your-poison sort of scenario.
My pulmonary function tests were also very good. Actually, with the exception of one number, they were out of the ballpark.
Every time I come Dr. Gahl asks me, always in front of the students for some reason, if I think I’m getting the drug. I hate the question. I hate it because if I’m not getting the drug I’m going to look like a real schmuck when the blind is finally broken. I hate the idea that I could be that prone to the power of suggestion. But yes, I do think I’m on the drug.
The little bit of discouraging news is that one number on my pulmonary function test that tends to indicate inflammation was down quite a little bit. This would indicate my asthma isn’t well controlled and that there are some restrictive airway issues going on in there. That probably explains the increased cough and some of the shortness of breath. Kevin changed my asthma medications. It’s a bit concerning to me as with so many of us the pattern seems to be asthma and inflammation before turning to fibrosis.
My CT scan also showed an ever so slight amount of new fibrosis. The doctors went out of their way to stress it was tiny, barely worth mentioning etc. etc. etc. Intellectually I get that. On a more primal level, however, the idea that there’s even one additional fibrotic cell in there just doesn’t sit well with me.
It reminds me that while I’m doing well, and that while my disease seems to be moving very slowly, it’s still moving. It’s still there sort of lurking beneath the surface. This isn’t a cure.
But, it’s better than the alternative.
I’m very tired.
It’s going to be a long week and it’s only Tuesday.
I don’t think I realize just how much the trips to the NIH take out of a person until I get home. All I’ve wanted to do today is sleep. I’m completely worn out. I’m usually worn out by the time I get to NIH and I return a different sort of worn out.
The trip was full of some good news. First, the mystery lump in my breast is – drum roll please – not cancer. Yahoo! I really didn’t feel it was because I’ve been through this before and it always turns out to be a calcium deposit. But still, there’s always that “what if” lurking in the back of your mind whenever anyone in an all-knowing white coat wants to test something. Had it been cancer I don’t know what we would have done next. It would have affected the drug trial, and since I already have pulmonary fibrosis, I suspect many of the cancer treatment options, like radiation, would have been a bad idea for my lungs. I was afraid I’d find myself in a pick-your-poison sort of scenario.
My pulmonary function tests were also very good. Actually, with the exception of one number, they were out of the ballpark.
Every time I come Dr. Gahl asks me, always in front of the students for some reason, if I think I’m getting the drug. I hate the question. I hate it because if I’m not getting the drug I’m going to look like a real schmuck when the blind is finally broken. I hate the idea that I could be that prone to the power of suggestion. But yes, I do think I’m on the drug.
The little bit of discouraging news is that one number on my pulmonary function test that tends to indicate inflammation was down quite a little bit. This would indicate my asthma isn’t well controlled and that there are some restrictive airway issues going on in there. That probably explains the increased cough and some of the shortness of breath. Kevin changed my asthma medications. It’s a bit concerning to me as with so many of us the pattern seems to be asthma and inflammation before turning to fibrosis.
My CT scan also showed an ever so slight amount of new fibrosis. The doctors went out of their way to stress it was tiny, barely worth mentioning etc. etc. etc. Intellectually I get that. On a more primal level, however, the idea that there’s even one additional fibrotic cell in there just doesn’t sit well with me.
It reminds me that while I’m doing well, and that while my disease seems to be moving very slowly, it’s still moving. It’s still there sort of lurking beneath the surface. This isn’t a cure.
But, it’s better than the alternative.
Comments
My regards,
Mark Shreve
Founder, Coalition for Pulmonary Fibrosis
We are soo happy to hear that your test results came back good and that the mystery lump wasn't cancer. Whohoo!! It's always scary dealing with questionable spots. I know what you mean about the tiny new fibrosis area. You are doing so well. Just hang in there and continue doing what you're doing. It is obviously working well for you.
Love and prayers,
Candice and Crystal