Signs of Improvement

I don't take my laptop when I'm not staying overnight. So this is the first opportunity I've had to post an update to my blog today.

One of the first things we were told when Marian was moved to ICU was that the family needs to use this time to get rested. She is being extra-closely monitored right now and doesn't need someone with her at all times. I had stayed three nights in a row and hadn't taken a shower since Saturday afternoon. So I went home yesterday and did as I was told. I worked out for an hour. I ate dinner. I poured myself a glass of wine and soaked in the tub for over an hour. Then I went to bed and slept like a rock until after 7:00 a.m. John told me today about a brief conversation we had before he left for work this morning. But I couldn't remember a word of it. When I woke up, I thought, "Wow. I didn't even hear John getting ready for work." Turns out he kissed me good-bye, asked me if I was cold, and I said, "A little." So he turned the heat up one degree.

I was a little slow moving this morning, since I knew Marian was in good hands. I finally arrived at her bedside shortly after noon. When I got there, she was sitting up in a chair, eating lunch and cracking jokes. I could not believe how good she looked.

She still has a ways to go to be well. I am not intending to minimize how sick she still is. But I really believe she finally turned the corner. Since being moved to ICU, they have been imposing that bi-pap machine on her more assertively (which has made a big difference in her condition). She kept the mask on all night last night. When I got there, they had let her switch back to the mask that just emits oxygen (but doesn't force air into her lungs). And she was doing fine. But she still couldn't take the mask off and keep it off. She had to remove it to take a bite of her lunch and then put it back over her nose and mouth. If she is off of oxygen for a few minutes, her oxygen saturation starts dropping. She is recovering from those drops more quickly than she was prior to the ICU. But she still cannot maintain a healthy oxygen saturation on her own. She has to have constant oxygen from some type of mask.

I was so relieved when I saw her today, my eyes filled with tears. I don't know what it is with me, but all emotion produces tears. Today they were tears of joy.

She stayed in the chair until almost 3:00 p.m. And then she got back into bed and reluctantly wore the bi-pap mask again for a couple of hours before asking for a break. Her dinner tray did not look appetizing to her (I could hardly blame her), so she had part of a milkshake from Sonic and a few bites of an oatmeal cookie. But she has eaten more today than any other day since being admitted. She even asked if she could have ice cream for her peach cobbler at lunch. That in itself was a huge sign of improvement. She has not had an appetite and nothing has really sounded or tasted good to her in days.

When we left tonight, it was obvious that she had spent her little bit of increased energy. She seemed pretty worn out. I'm sure by now she is back on the bi-pap machine for the night and I hope she's sound asleep.

Most of the time her cell phone is off because she has not had the energy to talk. So if anyone reading has tried (and failed) to reach her, that's why. Although she's getting better, she still experiences a pretty swift decline in oxygen saturation when she takes the oxygen mask off (she has to remove it to speak into the phone). When that happens, she gets short of breath and then has to recover from the drop in oxygen level. So when she does take a call, it's important that she keeps conversations short so she can get the mask back on securely. In a few days, this shouldn't be such a problem.

I spoke to Dr. Flinn this evening and he is still waiting on test results to come back. But one result he did get today was that Marian tested positive for active CMV. Most people have come in contact with the virus at some point in their lives. 80% of people eighty and over in age have the antibodies. It's a virus that can lie dormant in the body for years and then become active for various reasons. The virus is a much greater threat to immunocompromised individuals, including people with leukemia (according to Wikipedia) and the elderly. Dr. Flinn told me that it's almost impossible to know for sure if Marian's immunocompromised pneumonia stems from CLL, from treatment, from age, or a combination of all three. But even a low level of active CMV is an indication that her immunosuppression is a factor in her pneumonia.

There are still many test results we are waiting for. Pneumocystis carinii pneumonia (PCP) is one strain of pneumonia Marian is being tested for. I think Dr. Flinn said that result should come in the next few days. This type of pneumonia sometimes causes hypercalcemia. It's rare, but it happens. I learned about it by searching online. And I asked Dr. Flinn what he thought about that as a possibility. He knows I am an avid researcher and continually trying to increase my medical knowledge for the benefit of John and Marian. But I think sometimes I still surprise him with some of my questions. I am the one who brought up PCP a couple of days ago in connection with hypercalcemia and asked if he was testing her for that. He was, of course.

Right now, Marian is getting four different antibiotics, one antifungal and now one antiviral. They are treating all the possible causes while waiting to find out which of the drugs was the one that made her better. But, as the infectious disease doctor said today, "If we get you well, that is the main thing. Then hopefully we'll get to know how we did it and which medicine actually made you better."

One of the nurses on Marian's original floor asked me why I didn't become a doctor. Well, I didn't tell him that the main reason is because I am intimidated by math equations that have letters in them. I can't imagine myself ever having been able to get through high level math or chemistry courses. But the main reason is that back when I should have been making decisions about what to do with my life, my world was very small and I had so many limitations put on me. I never would have believed that I had the aptitude or the potential to go into the medical field. But I realize now that I could have. I surprise myself at how much information I grasp and retain. But just having someone say, "You could have done this," feels nice. Because I really never had the confidence in myself that other people thought I had. Some people assume an outgoing person is a confident person. But it isn't necessarily true.

I really appreciate the way Dr. Flinn takes the time to explain details to me and answer my questions. When I brought up PCP and the possibility of it causing the hypercalcemia, he said, "You're right. That is a possibility." He does not have the "doctor ego" that you encounter in so many physicians. And I love that about him because he really is a brilliant specialist. I respect his knowledge and I think he appreciates the time and effort I've invested in understanding everything that poses a threat to John and Marian. We laugh sometimes about how I have been an unpaid PR person for him. I've sent several patients to him because I can't imagine anyone finding a better hematologist. And if you've read the top of my blog, you already know that I say what I think.

I may be starting to ramble. So I think I will close this installment and go to bed.

Thanks for checking on Marian's progress ... and even more ... for your prayers.