Sunday 8 Oct 2017
It has been a tough week for Julie. She has been having a harder time getting out of bed, and her appetite is completely gone, and she is very tired. She has been needing oxygen all the time, and occasionally she says it is hard to breath. Nine days ago her chest X-ray showed some fluid accumulating in her chest outside the lungs, and possibly a mild pneumonia. She was put on antibiotics and we stopped giving her IV fluids. At her appointment last Monday, it was decided to give her a blood transfusion, which we did on Tuesday. On Wednesday we starting giving her full time IV nutrition. Thursday she had a CT scan that showed increasing fluid in her chest, so that was drained, about 2 liters total. Her oxygen saturation showed a big improvement and no more complaints about breathing, at least for a day or two. Still, she continued to feel more “sick” and “bad”. She was off antibiotics Friday and yesterday.
Yesterday she stayed in bed until about 5 PM. After a shower, some visitors, and a drive, we sat in the living room together with the children until bedtime. We sent the kids off to bed, and then when I helped her get out of her chair I noticed she felt too warm, and she had a fever of 101. Because of everything that is going on, and with her port accessed, she is at increased risk of infection. So we went to the ER at about 11 PM. After her tests and X-ray, we found that she had pneumonia. She recieved antibiotics and we arrived home at about 3 AM. Then she couldn’t sleep…
Julie is trying so hard to hang on. Even through the pain and anguish she doesn’t want it to end. She has said a few things that really got my attention. Tuesday, as we were making our way to the car after her blood transfusion, she broke down and sobbed, “I just thought it would be easier, living longer.”
Early this morning as we were coming home from the ER she said to me, “I am ruining your life.” I told her to never say that. I hope she never feels that. I hope we can make her always feel precious and cherished, and not a bother in any way. She is always extremely kind, never cross or annoyed. Always so patient with us. She tells me all the time, “Thank you” and “I love you” in tones that are so earnest and so real and kind that printed word can’t really describe.
Just a few hours ago we had spent some more time talking with the children about how Julie is doing, and trying to help them navigate this difficult time. Then they left to go get ready for church. Christopher always looks so brave and hopeful. They are all very compassionate with there mother, but Christopher does not cry. Julie said to me, “Watch out for Christopher. He is so tender, and you won’t know it, because he won’t show when he is crying.” I thought, “somethings only a mother knows, what am I going to do without her.”
Sometime earlier this morning, around 4 or 5 AM, she was very anxious and concerned about dying. She asked me if after she died if she would still be asleep, or if she would be awake in the spirit world. We talked about the reasons we believed she would be awake, and happy. I was worried about what I might do next if she continued to get worse and no longer able to communicate her wishes. She does not want another hospital stay, and we have decided never to do anything “heroic” like CPR. She has given me authority to make decisions for her in that situation, still I ask occasionally what her desires are. Knowing that she suffers, and knowing that to alleviate suffering, more and more pain medication may be necessary, which will also hasten death, I asked her again, “What do you want me to do if you get worse?” With a knowing and sorrowful expression, she looked at me and cried, “I just wanted to live, so bad!”