Short & Sweet
I know what you're thinking. You have never seen this as a subject line for one of my blog posts and, let me just say that you probably never will again. But it is 8:00 p.m., I just got home, and if I don't work out immediately, I will go straight into the tub and just skip it -- which I can't really afford to do.
Bottom line: Marian is doing great tonight. She's back in a regular room -- the same room she started out in last Thursday. She seems to be holding her own. We brought her a big, juicy hamburger from Chili's and when we walked in with it, she said that she hadn't planned to eat anything on her dinner tray, but it actually looked good so she ate a little bit of it. And then she ate about one/third of the burger too. She obviously couldn't eat all of it, and said, "I'm sorry I wasted your money." I said, "Did you enjoy what you ate?" She said, "Yes, I did." And I said, "Then it was money well spent." And I meant it.
I expected them to have her up walking just a bit this afternoon and they never did. The nurse said they didn't want to push her too hard her first day back from ICU. And when she mentioned walking to Marian, Marian didn't seem all that gung-ho about it right then. So I think they let her wait and then probably forgot about it. But I'm sure they will have her up walking tomorrow.
I have felt really tired today. I think the whole week has caught up with me. I'm letting other family members hang out with her tomorrow and I'm going to spend the day at home, getting my laundry caught up. I also have an appt. to get my hair cut and colored right in the middle of the day and didn't want to cancel if I didn't have to.
This health scare began on January 3 when Marian was admitted to the hospital in Evansville. I drove up there and back on the 4th. She was released on the 5th, came straight to Dr. Flinn's office on the 6th and was admitted to Centennial, then went to ICU on the 10th.
Not exactly the way we expected to start the new year. But we are thankful for the outcome.
Dr. Flinn said this morning that all of the numbers that would indicate immunosuppression are actually very good. Her numbers don't indicate an immunocompromised patient. However, being immunocompromised is more than the counts themselves. You can have the right number of cells but not have cells that are functioning the way they should be. But there is no strong evidence that this pneumonia is the result of immunosuppression or CAL-101. On the other hand, we don't have evidence that it wasn't. Dr. Flinn said he will probably put her back on it when she's completely well and take stronger prophylactic measures against infection. Her CLL has been responding very well to the CAL-101. So based on what he knows at this point, he doesn't see any reason to bar her from continuing in the trial if she wants to continue. That is totally up to her.
Anyone who has had CLL very long, and especially those who have had treatment, can tell you that some aspects of this disease are a guessing game. You really never know how any one patient will progress or respond to treatment. Every person (and every case of CLL) has their own variation, which makes treatment an art as well as a science.
So far, every culture that has come back from the bronchoscopy has been negative. So we don't know what caused the pneumonia. But the important thing is that she is recovering and getting better.
Okay, so maybe that wasn't so short. I bet some of you (like Danny) thought, "Yeah, right" when you saw the link.
The truth is, I really intended to be brief. I'm just incapable.
Bottom line: Marian is doing great tonight. She's back in a regular room -- the same room she started out in last Thursday. She seems to be holding her own. We brought her a big, juicy hamburger from Chili's and when we walked in with it, she said that she hadn't planned to eat anything on her dinner tray, but it actually looked good so she ate a little bit of it. And then she ate about one/third of the burger too. She obviously couldn't eat all of it, and said, "I'm sorry I wasted your money." I said, "Did you enjoy what you ate?" She said, "Yes, I did." And I said, "Then it was money well spent." And I meant it.
I expected them to have her up walking just a bit this afternoon and they never did. The nurse said they didn't want to push her too hard her first day back from ICU. And when she mentioned walking to Marian, Marian didn't seem all that gung-ho about it right then. So I think they let her wait and then probably forgot about it. But I'm sure they will have her up walking tomorrow.
I have felt really tired today. I think the whole week has caught up with me. I'm letting other family members hang out with her tomorrow and I'm going to spend the day at home, getting my laundry caught up. I also have an appt. to get my hair cut and colored right in the middle of the day and didn't want to cancel if I didn't have to.
This health scare began on January 3 when Marian was admitted to the hospital in Evansville. I drove up there and back on the 4th. She was released on the 5th, came straight to Dr. Flinn's office on the 6th and was admitted to Centennial, then went to ICU on the 10th.
Not exactly the way we expected to start the new year. But we are thankful for the outcome.
Dr. Flinn said this morning that all of the numbers that would indicate immunosuppression are actually very good. Her numbers don't indicate an immunocompromised patient. However, being immunocompromised is more than the counts themselves. You can have the right number of cells but not have cells that are functioning the way they should be. But there is no strong evidence that this pneumonia is the result of immunosuppression or CAL-101. On the other hand, we don't have evidence that it wasn't. Dr. Flinn said he will probably put her back on it when she's completely well and take stronger prophylactic measures against infection. Her CLL has been responding very well to the CAL-101. So based on what he knows at this point, he doesn't see any reason to bar her from continuing in the trial if she wants to continue. That is totally up to her.
Anyone who has had CLL very long, and especially those who have had treatment, can tell you that some aspects of this disease are a guessing game. You really never know how any one patient will progress or respond to treatment. Every person (and every case of CLL) has their own variation, which makes treatment an art as well as a science.
So far, every culture that has come back from the bronchoscopy has been negative. So we don't know what caused the pneumonia. But the important thing is that she is recovering and getting better.
Okay, so maybe that wasn't so short. I bet some of you (like Danny) thought, "Yeah, right" when you saw the link.
The truth is, I really intended to be brief. I'm just incapable.
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