I wanted to share with everyone where we are now. We were optimistic that we would be heading home today. Friday night and Saturday morning were normal. The Long chemo was completed, and we started on the secondary Chemo, Cytarabine. After one full day, we noticed that her face was flushed. That is a normal side effect of the chemical.
Her demeanor changed on Saturday afternoon. After lunch she became tired and started to rest more. She was concerned that she was not going to sleep that night. She did. Even during the early morning blood draws, she was mostly passed out.
I will ask her what she wants to order for meals throughout the day. I let her call and place the orders. Sunday Morning, she was on hold when our nurse, Gabby, came in. She knew that there was noise she could hear. She tried to turn it down by poking at the bed controls, and then the remote for the TV. The nurse and I pointed out it was the telephone.
It was at that point we could tell that something was off. Her thinking was slowed. It is still concerning. The Oncologist had just arrived on the floor for rounds and made a quick stop in to see what was happening. Motor skills are still good. Word Association was slow. He made the decision to pause the chemo while we tried to determine what was happening. She did a CT scan and drew a lot of blood for analysis.
When I say a lot… most of us have blood done and they draw 2-3 small vials. This drawing was about ten vials and two “culture” bottles. The culture bottles look like fat pepper sauce bottles. After all that was done, there was nothing conclusive. Even her numbers that we watch in chemo were in their regular ranges.
Sunday, we paused everything and watched to see if things would change overnight. She was able to eat at every meal and take her oral medications.
4:30 am I am woken up by the nurses shouting “what are you doing out here?” Michele up to this point in our stay has been able to get to the bathroom on her own without trouble. She can be quiet, and I don’t always wake up when she does go. She had wandered out into the hall this time. I am not sure how far that she got, but they were real quick to catch her.
The nurses took her back to the room and to the restroom. Shortly after she was back in the hospital bed, she started complaining of severe abdominal pain. She was in tears. Of course, at this hour between 5 and 6 am, paging a doctor on call does not always get returned right away. With some medication approved to ease the pain, she was able to go back to sleep and rest. I stayed up for a while to watch her.
Each time since the early morning incident she has gone right to go to the bathroom when she should be going left. We have been on alert since then to keep watch on her.
These hospital beds now have alarms that can be set so that a patient cannot get out of bed on their own without letting someone know to help them. I imagine before this a person would have been strapped down to keep them from moving. I can tell you the system works. Not only does the alarm sound in the room, but it rings the nurse’s desk and in general is loud in the hallway.
This morning we also experienced where she is unable to have robust communication verbally. All day she has been in a zombie like state. She can move fine. Her eyes are staying closed or open but with a blank stare. We are scheduled for an MRI today to take a deeper dive into the body and brain and an ECG for brain activity.
We have both cried and are both scared as to what may be going on. Confusion can come from the Methotrexate, but we have flushed this through the body now. Blood work is not showing anything. We are likely to also draw spinal fluid through her Ommaya Reservoir.
She can talk. It is limited. The Neurology department stopped and did an evaluation. She can answer most questions, but there are words that she grasps for and is unable to put together.
We sit and wait
When things are not obvious in the medical world, they study. We are in that phase right now. My observation is that she is in a steady state right now. Stable. We are being patient in waiting for the test to be run. We know that we are not going home today and certainly not tomorrow either. The room reservation is staying open.
I have not shed tears like I have today since the first round where everything was so new. In everyday life her tears are rare and yet today, we are tearing through the tissues. I must take comfort when the nurses say, “It is good that you are here for her”.
Keep the prayers coming. Michele is a fighter, and we are confident we will figure this out and overcome it as well.
We Love all of you!