Monday Afternoon Update on Marian
Dr. Flinn moved Marian to ICU this morning. She did not take a turn for the worse, but she wasn't improving. One persistent problem has been keeping her oxygen saturation level up. That wasn't getting any better. She is being monitored very closely and was being kept on the bi-pap machine continuously when we left. I know they do not want to intubate her unless it is an absolute necessity. There were two very positive things this morning. First, she was hungry this morning and ate a pretty decent breakfast. Second, she seems to be getting more comfortable with the bi-pap machine and tolerating it better. She did not seem like she was in any discomfort when we left.
I am home for the night. The ICU nurse urged all of us to use this time to get rested. And I know I need to take her advice. For all my friends who have been worrying about me not taking care of myself, I am doing it. As soon as I get this update on my blog, I'm going to exercise and soak in a tub of hot water for I don't know how long.
For all of my CLL readers who are wondering about the CLL and/or treatment connection to what's happening, I want to explain what I know at this point.
When Dr. Flinn admitted Marian, he said that he was taking her off CAL-101 temporarily while he figured out what was causing the hypercalcemia. But it wasn't until after she was in the hospital that we knew she had pnuemonia also. He had said that he knew of no other patient who had problems with hypercalcemia related to CAL-101. He was just being cautious since the drug is still being studied. But I found out today that he is considering that Marian may have gotten pneumonia because of immunosuppression, and whether or not the CAL-101 was the cause of that is uncertain.
Nearly all treatments for any kind of cancer carry some amount of risk (varying degrees) of immunosuppression. And all CLL patients (whether treated or untreated) are immunocompromised by the CLL. Older patients are more fragile than younger patients and that is why I was hoping Marian could avoid any kind of harsh chemo like John had (fludrabine and cytoxan) because those drugs are very immunosuppressive. I was afraid she couldn't take that kind of aggressive treatment at her age. And that's why I was happy she got into the CAL-101 trial. Patients on CAL-101 (including John) do not seem to be suffering any serious side effects and toxicity is low. But I guess that with any therapy (particularly one that is still being studied), there are always risks. When a patient needs to treat their CLL, they only have so many options. And I felt like we were choosing one of the mildest.
I really hope treatment isn't related to this. But when it comes to CLL and all the different treatments, risks are unavoidable. She was already immunocompromised by her CLL even without treatment. And treatment decisions would be so much easier if we had a crystal ball that showed the future. One thing I do know is that Marian needed treatment for the CLL. It was just a matter of which treatment to use.
From a caregiver perspective, I'm trying to do such a good job taking care of her. I am doing my absolute best to protect her and keep her well. She had a cough before beginning treatment, but no fever and no other symptoms such as weakness or shortness of breath. Every appointment since treatment began, she has told Dr. Flinn that she feels great. The symptoms came on pretty suddenly and the hypercalcemia was the first "problem" to be diagnosed. I attributed her weakness to the hypercalcemia; especially when her PCP told her she had bronchitis. Apparently, she had pneumonia and her PCP thought it was just bronchitis. So I guess I can't be too hard on myself for not knowing. But I put so much pressure on myself as a caregiver. I keep thinking that if only I would have been more adamant about finding the reason for her cough...
However, I nagged her to death about her cough and going to her PCP for a checkup. But she didn't think it was anything serious. She said she gets a cough every year at this time and it usually turns into laryngitis. She wasn't worried about it. I should have been more persistent or made a bigger deal out of it the last time we were in Dr. Flinn's office (before she went home). But I did tell her that CLL patients had to be very cautious not to ignore anything that could turn into something more serious since they are immmunocompromised. I just never dreamed she could wind up in this condition.
I guess in reading this you can hear the battle being waged in my mind. Could I have done more to prevent this? And trying to convince myself that none of this is my fault.
I'm home now. I'm going to rest tonight and go back tomorrow. Now that she is in ICU, she is being watched so closely. I know she doesn't need me there all the time at the moment. That ICU was the nicest and most private I have ever seen. She is in good hands. I have been so pleased with the care she has received at Sarah Cannon.
I know that part of the emotion I'm struggling with right now is stress-related. I am sometimes very hard on myself and expect perfection when perfection is an impossible and unattainable goal. I just don't know how to fix that default that I tend to go into. Please include me in your prayers tonight. I need to be strong for Marian.
I am home for the night. The ICU nurse urged all of us to use this time to get rested. And I know I need to take her advice. For all my friends who have been worrying about me not taking care of myself, I am doing it. As soon as I get this update on my blog, I'm going to exercise and soak in a tub of hot water for I don't know how long.
For all of my CLL readers who are wondering about the CLL and/or treatment connection to what's happening, I want to explain what I know at this point.
When Dr. Flinn admitted Marian, he said that he was taking her off CAL-101 temporarily while he figured out what was causing the hypercalcemia. But it wasn't until after she was in the hospital that we knew she had pnuemonia also. He had said that he knew of no other patient who had problems with hypercalcemia related to CAL-101. He was just being cautious since the drug is still being studied. But I found out today that he is considering that Marian may have gotten pneumonia because of immunosuppression, and whether or not the CAL-101 was the cause of that is uncertain.
Nearly all treatments for any kind of cancer carry some amount of risk (varying degrees) of immunosuppression. And all CLL patients (whether treated or untreated) are immunocompromised by the CLL. Older patients are more fragile than younger patients and that is why I was hoping Marian could avoid any kind of harsh chemo like John had (fludrabine and cytoxan) because those drugs are very immunosuppressive. I was afraid she couldn't take that kind of aggressive treatment at her age. And that's why I was happy she got into the CAL-101 trial. Patients on CAL-101 (including John) do not seem to be suffering any serious side effects and toxicity is low. But I guess that with any therapy (particularly one that is still being studied), there are always risks. When a patient needs to treat their CLL, they only have so many options. And I felt like we were choosing one of the mildest.
I really hope treatment isn't related to this. But when it comes to CLL and all the different treatments, risks are unavoidable. She was already immunocompromised by her CLL even without treatment. And treatment decisions would be so much easier if we had a crystal ball that showed the future. One thing I do know is that Marian needed treatment for the CLL. It was just a matter of which treatment to use.
From a caregiver perspective, I'm trying to do such a good job taking care of her. I am doing my absolute best to protect her and keep her well. She had a cough before beginning treatment, but no fever and no other symptoms such as weakness or shortness of breath. Every appointment since treatment began, she has told Dr. Flinn that she feels great. The symptoms came on pretty suddenly and the hypercalcemia was the first "problem" to be diagnosed. I attributed her weakness to the hypercalcemia; especially when her PCP told her she had bronchitis. Apparently, she had pneumonia and her PCP thought it was just bronchitis. So I guess I can't be too hard on myself for not knowing. But I put so much pressure on myself as a caregiver. I keep thinking that if only I would have been more adamant about finding the reason for her cough...
However, I nagged her to death about her cough and going to her PCP for a checkup. But she didn't think it was anything serious. She said she gets a cough every year at this time and it usually turns into laryngitis. She wasn't worried about it. I should have been more persistent or made a bigger deal out of it the last time we were in Dr. Flinn's office (before she went home). But I did tell her that CLL patients had to be very cautious not to ignore anything that could turn into something more serious since they are immmunocompromised. I just never dreamed she could wind up in this condition.
I guess in reading this you can hear the battle being waged in my mind. Could I have done more to prevent this? And trying to convince myself that none of this is my fault.
I'm home now. I'm going to rest tonight and go back tomorrow. Now that she is in ICU, she is being watched so closely. I know she doesn't need me there all the time at the moment. That ICU was the nicest and most private I have ever seen. She is in good hands. I have been so pleased with the care she has received at Sarah Cannon.
I know that part of the emotion I'm struggling with right now is stress-related. I am sometimes very hard on myself and expect perfection when perfection is an impossible and unattainable goal. I just don't know how to fix that default that I tend to go into. Please include me in your prayers tonight. I need to be strong for Marian.
Comments