Sunday Afternoon
Marian's bronchoscopy went fine. They washed her lungs out and took biopsy samples to determine the specific origin of her pneumonia. Those will take a while to grow and produce results. They treat different causes with different drugs, so it's important to know they are treating the infection with the right stuff. In the meantime, an antifungal was added to the three antibiotics she is already on.
Dr. Berdeja said the pulmonologist didn't see anything real bad in her lungs. They looked a little better than he was expecting from the x-rays and the ct scan. But at the same time, he said that her lungs were worse today than yesterday. And they are keeping a close eye on that trend. Right now she is on the highest level of oxygen then can give by canula (don't know if I'm spelling that right). And sometimes pneumonia gets worse -- as it's being treated -- before it gets better. So he wanted us to be prepared in case there is a sudden change. He said if she gets worse, it will probably happen fast and suddenly. So that's why he has the conversation about what to do in advance. He had to know that she wanted to be treated aggressively if that happens. Some people don't want to be put on a ventilator. But Marian just wants to get better, whatever that takes.
As of right now, there is no plan to move her to ICU and a ventilator. If she remains stable, she is fine where she is. She will only be put on the breathing machine if her condition gets worse than it is today.
When Marian came back from the bronchoscopy, she looked good. She had a couple of brief visitors. She said she was hungry for the first time. She had her lunch in front of her. And then she got a phone call. I could tell she was really enjoying talking. But I knew what was going to happen. The longer she talked, the more exhausted she became. And she didn't wind up eating as much as she might have because she expended so much energy on the phone. But she never told the person that she had just started eating. And it was 2:00 p.m., not exactly lunch time. I kept thinking, "Should I say something? Should I remind her that she is going to use all of her energy chatting and then won't have the energy to eat? Or should I just keep my mouth shut and not be bossy?"
Finally, Lu and I did both make the suggestion that she needed to finish eating and not wear herself out. But she kept talking. And she was like a completely different person when she hung up the phone. She was tired. And she said she was too full to eat any more. She is sleeping now, but restlessly. If you had seen her two hours ago, you would have thought she was doing great. But if you came in now, you wouldn't.
I was just telling my sister-in-law that I'm glad she and Jeff are here and seeing how fast things can change. It's hard for someone to understand unless they witness it themself. This morning I was so excited about today being a turn around day. But right now I'm starting to worry that she could be getting worse. Every afternoon I feel torn between staying and going home. I don't want Marian to be alone. I know she is in good hands with the hospital staff. They have been excellent. But I know I have been able to assist her and let the nurses know what I'm observing in the night by being in the room. The nurses have an entire floor of patients to care for.
I guess there is also a mother hen part of me in this situation. I know in my heart that even if someone else volunteers to spend the night, I will have a hard time leaving. I will, because I would never want anyone else in the family to think I am trying to take over or be "in charge." But at the same time I can't help feeling torn about leaving when she is not improving. I just can't help it.
I have tried to keep track of all Marian's CLL issues the last three years. I am with her at every appointment. I even have a spreadsheet of every blood test she's had since diagnosis. It kills me not to be in the room when the doctor comes so I can ask him questions and understand what's happening. I am so "hands on" and intimately involved in her care. But I constantly worry that this side of me could be misinterpreted by another family member as "controlling." I have wounds from the past that make me fear this in an out of proportion context. Sometimes I think I'm even slightly paranoid that someone will perceive me that way. But I know I can't allow myself to focus on stuff like that -- because then I make it about me. And it isn't.
Such are the rambling thoughts of a caregiver under stress. Don't read this and think, "Shari's about to crack. She needs to go home." I'm not. I'm really strong in these situations. Yes, I feel some emotion. But I get on my blog and process it. I let myself shed a few tears. I try not to totally bottle it up. And then I'm okay again.
I know that some other caregiver is reading this and going, "I know exactly how she feels." And that's another reason why I share so openly. I know how reassuring it is to have someone relate and to know I'm not the only one who feels this way.
I will keep the updates coming. Thanks again for your prayers.
Dr. Berdeja said the pulmonologist didn't see anything real bad in her lungs. They looked a little better than he was expecting from the x-rays and the ct scan. But at the same time, he said that her lungs were worse today than yesterday. And they are keeping a close eye on that trend. Right now she is on the highest level of oxygen then can give by canula (don't know if I'm spelling that right). And sometimes pneumonia gets worse -- as it's being treated -- before it gets better. So he wanted us to be prepared in case there is a sudden change. He said if she gets worse, it will probably happen fast and suddenly. So that's why he has the conversation about what to do in advance. He had to know that she wanted to be treated aggressively if that happens. Some people don't want to be put on a ventilator. But Marian just wants to get better, whatever that takes.
As of right now, there is no plan to move her to ICU and a ventilator. If she remains stable, she is fine where she is. She will only be put on the breathing machine if her condition gets worse than it is today.
When Marian came back from the bronchoscopy, she looked good. She had a couple of brief visitors. She said she was hungry for the first time. She had her lunch in front of her. And then she got a phone call. I could tell she was really enjoying talking. But I knew what was going to happen. The longer she talked, the more exhausted she became. And she didn't wind up eating as much as she might have because she expended so much energy on the phone. But she never told the person that she had just started eating. And it was 2:00 p.m., not exactly lunch time. I kept thinking, "Should I say something? Should I remind her that she is going to use all of her energy chatting and then won't have the energy to eat? Or should I just keep my mouth shut and not be bossy?"
Finally, Lu and I did both make the suggestion that she needed to finish eating and not wear herself out. But she kept talking. And she was like a completely different person when she hung up the phone. She was tired. And she said she was too full to eat any more. She is sleeping now, but restlessly. If you had seen her two hours ago, you would have thought she was doing great. But if you came in now, you wouldn't.
I was just telling my sister-in-law that I'm glad she and Jeff are here and seeing how fast things can change. It's hard for someone to understand unless they witness it themself. This morning I was so excited about today being a turn around day. But right now I'm starting to worry that she could be getting worse. Every afternoon I feel torn between staying and going home. I don't want Marian to be alone. I know she is in good hands with the hospital staff. They have been excellent. But I know I have been able to assist her and let the nurses know what I'm observing in the night by being in the room. The nurses have an entire floor of patients to care for.
I guess there is also a mother hen part of me in this situation. I know in my heart that even if someone else volunteers to spend the night, I will have a hard time leaving. I will, because I would never want anyone else in the family to think I am trying to take over or be "in charge." But at the same time I can't help feeling torn about leaving when she is not improving. I just can't help it.
I have tried to keep track of all Marian's CLL issues the last three years. I am with her at every appointment. I even have a spreadsheet of every blood test she's had since diagnosis. It kills me not to be in the room when the doctor comes so I can ask him questions and understand what's happening. I am so "hands on" and intimately involved in her care. But I constantly worry that this side of me could be misinterpreted by another family member as "controlling." I have wounds from the past that make me fear this in an out of proportion context. Sometimes I think I'm even slightly paranoid that someone will perceive me that way. But I know I can't allow myself to focus on stuff like that -- because then I make it about me. And it isn't.
Such are the rambling thoughts of a caregiver under stress. Don't read this and think, "Shari's about to crack. She needs to go home." I'm not. I'm really strong in these situations. Yes, I feel some emotion. But I get on my blog and process it. I let myself shed a few tears. I try not to totally bottle it up. And then I'm okay again.
I know that some other caregiver is reading this and going, "I know exactly how she feels." And that's another reason why I share so openly. I know how reassuring it is to have someone relate and to know I'm not the only one who feels this way.
I will keep the updates coming. Thanks again for your prayers.
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