Today has been a difficult day. When I saw Dad last Thursday, he was stronger, his voice was not as weak and we were able to have some conversations that made some sense. Today felt almost like we had stepped back a week in time. Dad's voice is hollow again and all progress seems to have vanished. His tolerance level regarding Mom having to hover over him constantly has greatly decreased. She has been following him into the bathrooms at Vanderbilt because he is so unsteady on his feet. It is not unusual for him to stay 10, 15 or more minutes in the bathroom, so Mom is naturally worried about him. He got very angry at her today for following him inside the men's room, and told her that she was embarrassing him. He said didn't need any help inside the bathroom. The next time, Mom enlisted a gentleman to yell out, "Freeman, are you okay?" when he went inside. This also agitated him, and he told Mom again that she was humiliating him. She tried her hand at pushing him in the wheelchair (NOT a good idea), and Dad told her that he was going to have to announce to everyone that they were from Kentucky, and that's why they were knocking everything over with their wheelchair. Mom was definitely on the top of Dad's "pet peeve" list.
The good news is (we always need to try and find SOME good news) that God laid out our day again. The only appointment we had today was for Dad's shot - and that was at 10:30. When we arrived at Vandy, we checked to see if Dad's hematologist was available to talk about the dexamethasone and diabetes issues. She wasn't working in the clinic, but they paged her and she came over to the hospital to talk to us anyway. She told Dad to keep taking the dose of steroids they had discussed yesterday. We also asked her why they didn't continue checking Dad's glucose at home when it had been four times a day at the hospital, especially considering he had been given insulin often to bring his glucose level down. She made a phone call, came back, and told us that we had an appointment with the diabetic educator in 20 minutes. She would teach Mom how to use a glucose monitor, and he would be checking at home from now on. We met with the instructor, who then told us we would be seeing the endocrinologist, Dr. Jagasia, as soon as she was finished with our monitor lesson. Dr. Jagasia decided Dad needs to be on insulin, but we are going to make a log for a few days of his glucose levels so they will know how much insulin to give him. After she was finished, she told us that she was going to set us up with the dietician, so we have a better idea of what Dad needs to be eating. Our appointment for the dietician would be in 20 minutes. After meeting with her, Mom and I decided we would take a chance, go back to the hematology department, and see if Dr. Reddy's nurse might be available to discuss Dad's rapidly declining health. His voice had changed quite a bit, and Dad was complaining of a terrible headache. He has had a bad headache for 3 days (the same amount of time he's been without the steroid). Dr. Reddy came back to talk to us herself, and after she assured us that we were not bothering her, she talked to Dad. He told her that his headache was "low grade" now. She said that possibly his voice change was due to the very long day he had, but if he was any worse in the morning, to call her. She is truly a compassionate lady, and I am very thankful to have her. We started for Kay's house.
On the way home, Dad started to drool again on one side of his mouth. It only took us 30 minutes to get home, but Dad refused to get out of the car when we arrived at Kay's. He said that he had a terrible headache, and that he was going to stay right where he was and rest. No amount of cajoling would change his mind. Mom moved to the front seat and stayed with him while I went into the house. She held his hand while he slept, and twenty minutes later we coaxed him out of the car. He went straight to bed. I left for home, and when I called to check on him later, he was trying to throw up. He is not supposed to get nauseous with this chemo regimen, so I don't know if it was due to his shot today, the steroids he has restarted or heaven forbid, that he is getting sick. Dr. Reddy doesn't feel like his backward slide is due to him having no steroids for the past few days. The possibility of what she leaves unsaid scares me to death. Mom mentioned to me on the way home that this could be the beginning............I told her not to even consider that possibility. My drive home was so incredibly sad. I hate leaving them so far away from their home, their church, their friends.......and me.
I am trying to spend as much time with Dad as I possibly can. Kay said that we need to try and enjoy our time together, making as many good memories as we can. I am kicking myself because I have spent more time with my Dad in the past three weeks than I have in the past 3 months, and he can't tell you if he's seen me in the last 10 minutes. His memories are reserved for events long ago. I tell him I love him, kiss his bald head constantly while pushing him in the wheelchair, and agonize when it's time to leave him again. He doesn't comprehend my angst. Even the dietician told us today what a blessing it was for Dad's mind to be located somewhere in the past, where knowledge of his disease is nowhere to be found. She was from New York, and when I met her, I judged her to be a typical Northerner. My first impression of her was that she wasn't as personable as others we have met during this illness, but after she talked to us for a while, and learned how quickly and drastically Dad's illness had struck, she began to cry. She insisted on personally pushing Dad and his wheelchair out herself through the long corridors, and I know we have found another person who will work hard to help Dad survive. Our list of God's helpers is growing quickly.
Please keep praying. We need a miracle.
Love,
Renee