As you can see by the dates, I needed to take a long break. I truly didn't expect the flood of emotions to come back so hard after writing part one. I'm in a better place again but I needed to take a break because part two is about our final week together. I needed to be mentally prepared because this is going to be harder than what I've written so far.
In part one I wrote the following:
A day or two later, Brian called me in the morning in a very serious panic. He was asking where I was and why wasn't I there. I had a doctor appointment for Jen that I needed to take her to. Before I left the night before, I made sure the nurse put a note on the board that I would be there around 11am so he would see it. She did but that board had so much writing on it from several days' prior, it was impossible to see a new note, especially for someone who is medicated. He told me that when he woke up, he thought he was in a crack house, and they were pushing more medication on him. They really were trying to give him more medication, but he was refusing. He told me he thinks they overdosed him during the night. When I got to the hospital, Brian had talked with a nurse about Hospice care. He was not doing good, and he just didn't want to suffer any longer because of what had happened. I talked with the NP of oncology and told her that when I stayed the night with Brian, the overnight nurse came in to give Brian his medications. Brian and I were awake and talking and he was completely coherent. The nurse asked him if he wanted the Ativan and Brian said no because he didn't need it. She convinced him to take it because it will help his breathing, so he agreed. Within 5 minutes Brian was out of it and could barely function. I was so upset so when it happened again, and Brian thought she gave him too much, I shared this story with the NP of Oncology. She put it in the PC to not give it to Brian unless he specifically asks for it.
This happened the following Monday, after my kids visited Brian. This is the Monday and Tuesday of our last week together. After being off the constant doses of Ativan and it was finally leaving his system, Brian was confused about the kids. He thought said "Hold On, I need to get something figured out. What is going on? Where am I?" I was shocked, I didn't know how to tell him he was in the hospital with cancer, but I did. He thought that we were all celebrating something and spent the night at a hotel. We did that many times as a family. We would sometimes just got hotel rooms to swim in the pool and have a good time. Brian thought that's what we did and got in an accident or something where he ended up in the hospital. My heart sank because I wished that was our story but unfortunately it wasn't. He then remembered and was grateful to be off that medication. While he was on Ativan, he was constantly seeing things, imagining things, thinking the TV was warning him of death, he was terrified of how he was going to die, and the Ativan just made it worse. He asked often why he couldn't remember things and I kept telling him it was the Ativan and when he had that bad experience, he realized it too. Thank Goodness!
Brian was really week on Tuesday. After the incident on Monday morning and then being extremely week on Tuesday, he was ready to let go. I explained that he was so week because he had not eaten much in almost a week and his red blood count was extremely low. Brians urine was dark red, but we were told by oncology that it was from the chemo or maybe from a small injury when the catheter was put in. But that same doctor told us earlier that he may have internal bleeding. I didn't know who to listen to anymore. At this point, we did know his blood count was really low, and he needed a transfusion. I convinced Brian to get the transfusion and if he doesn't feel better, then I will honor his wishes. Do you realize what I was actually saying? Thats the same question I asked myself when I said what I said. It was a very hard thing to contemplate.
Thank goodness my daughter Brianna was able to be with our girls to allow me to be by Brians side again that night. After I had put on my pajamas and settled in the doctor came in to see Brian and she saw me in my pajamas, and I could tell by the look on her face there was some concern. She left the room, and the nurse came in and asked my what my understanding is about staying the night. I simply said, "that I can." She told me about hospital policy, and I shared that I have permission from someone with more authority than the doctor. Brian was upset and said, "I can't believe they won't let you stay by the side of your dying husband." I assured him I wasn't leaving that night. The nurse looked into and saw that I was correct so that brought some relief to Brian. I was a little shocked at what he said but it was our reality.
The next morning Brian woke up feeling really good. He told the nurse that he felt better than he had before getting cancer; the blood transfusion had worked! He platelet count was now low, and he needed a platelet transfusion. Not long into it, Brian wasn't feeling well so they had to stop the transfusion. A little later they realized he blood sugar was low, so they gave him insulin. They tried to encourage him to eat but he not only had sores in his mouth that developed from chemo, but he also had thrush; everything he ate was painful. I remember the night our kids were there we ordered dinner before they left. Brian ordered a salad and not thinking, we put raspberry vinaigrette on his salad, and it was so painful he couldn't eat. The cafeteria was already closed so I went to Chick-Fil-A to get him a sandwich, but he couldn't eat that either.
The next morning Brian was not feeling well. He seemed to be backsliding again. He was just extremely week, so the nurses and I kept encouraging him to eat. He tried all day; he drank a protein shake and had some sherbert ice-cream. Later in the day I was getting ready to go home and Brian was terrified. He did not want me to leave, and I didn't know what to do. I was concerned about Jen and Kora and our daughter Brianna not being able to stay another night. I was so torn. I was angry that I was in a situation where I couldn't just stay with him, and I didn't know what to do. So, I called my daughter and asked her to stay with the girls one more night. In my heart I was praying, and in my mind, I was begging her; I was no issue for Brianna to stay with the girls.
That evening, Brian and I were talking, and he suddenly wasn't feeling good, and his hands began shaking a little. It was time for his next dose of morphine, so we started thinking he had become dependent/addicted to the morphine. We called the nurse, and she explained that he couldn't become dependent on the morphine but wasn't sure what was going on and asked if he had eaten anything. He had not eaten in hours and had not had any insulin. She checked his glucose, and it was around 30; she immediately ordered a massive shot of glucose and ran to get him orange juice to drink right away. The orange juice helped until they got the glucose from the pharmacy. I think that tube was almost two inches in diameter and about 5 or more inches long. It was pretty scary! Everything was ok after that except Brian just not feeling well and being really week. We stayed up talking for a while and then tried to sleep. He started having a coughing episode which was pretty common now. He would cough and cough for 20 minutes to an hour trying to cough up the phlegm and other stuff caused by the cancer. He would feel it sitting in his throat, but he couldn't get a deep enough breath the cough it up, so it sometime took an hour. That night it took two hours to cough it up and we both knew that was the longest it ever took. We were both concerned, and we tried to get some sleep. It wasn't long when the coughing episodes started again and each time it was taking about two hours to cough it up and it would immediately start over again. It went on all night and neither of us slept. Every time we started to dose off, the coughing would begin, and I remember just lying there watching Brian and I knew in my heart he was suffering so much, and, in the morning, he was going to tell me he couldn't fight any longer. I watched him and he watched me. I tried not to show my tears so I would bury my face in my blanket at times. I was terrified at what tomorrow was going to bring but I was pretty certain I already knew. He was suffering more than any other night that I had been with him.
I'm sharing something here that I have never told anyone. I have a few of those but I'm hoping that by sharing this I will finally be able to let it go because it haunts me constantly. If you do not believe there is a spiritual battle going on, I hope this helps you realize it is true. As your read earlier, I needed to go home because of our girls. Brian cried when I told him I had to go. I was angry that I had to go and all I wanted more than anything was to stay at his side. I was so torn up inside and felt anger, anxiety, fear, and desperation to call my daughter. What if she says she can't stay with the girls? What am I going to do. I cried and prayed, and God came through and as I said, Brianna had no problem staying with them and even offered to keep them each night and through the weekend. I was relieved at how God had already worked it out for us, BUT - that night watching my husband suffer more than he had yet, at times my mind would say "I don't know why you wanted me to stay when I can't help you." I immediately thought to myself, where is that coming from? I don't feel like that! Why am I thinking things like this? Am I sick? I knew those were not my thoughts and I knew it was Satan. I loved Brian so much. I didn't want him to die and would never think thoughts like that, but I did. I have asked God many, many times to forgive me for the thoughts I've had. I don't know if I'll ever forget the wrongful twisted thoughts like that, but I do know, they were not mine!
When it was finally around 7am, Brian and I finally gave up on trying to sleep any longer. It was time for the nurse's shift change anyway and we knew they would be coming in shortly. Brian and I started talking about his night and he told me what I dreaded to hear. He told me couldn't fight anymore. He shared how week he was and how hard it was to get through each coughing episode, and he asked for my permission to let go. I shared with Brian that I watched him all night and I knew this conversation was coming and how I hated seeing him suffer all night long.
I told him I would not fight him on his decision and after I said that there was a sense of peace and calm that came over Brian. I realized in that moment, that he had been fighting for me.
My story is being shared to help others so please feel free to comment or ask questions.
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