Writing this has been difficult as you can imagine. Every line I write brings my story to life all over again. When I see the picture of Brian and me smiling, I can't help but cry; I miss him so very much and never thought I would be living this life at my young age. Brian and I confided in each other that we both wanted to be the one to pass away first. Neither of us wanted to go through the pain of losing the other. His wish came true, and I am left here to try to move on in a way I never have before. I've experienced loss of a parent and loss of in-laws and friends, but that pain does not even come close to this pain. It is a very difficult journey and today I cried off and on all day. No matter how hard I try, sometimes I just break down completely. Today I feel so very lost, alone, desperate, and fearful. I quit my miserable job on September 19th, and I have been searching almost daily for a new one. I have no idea what is going to happen but I'm trying to put complete faith in God. I'm trying to remove material things from my mind and just accept Gods will no matter what that is, but it's not easy waiting. I used to see a future when Brian was still alive, now I see absolutely nothing. With Brian, I saw us doing things together, enjoying each other, enjoying each day, and growing old together. Now I see absolutely nothing. I have nothing to look forward to and simply feel lower than I have ever felt before. Every day is the same routine, I get up and pray, I do a short bible study, bring Kora to school, come home, do another bible study or look for and apply to jobs. Then severe loneliness sets in. I feel paralyzed and have no desire to do anything. I just want him to come home, but I know that will not happen and I need to keep moving on because I have to believe God has a better plan for me.
There are so many little things I experienced after Brian passed and I'll share them soon, but first, I need to get through the final two weeks of our last chapter.
When I arrived at the hospital, they were prepping Brian to drain his lung again. They had already admitted him and allowed me to wait in his room. When Brian came in, he looked much better and was in better spirits, but he still struggled to breath. We expected this because he had already gone through this a couple of times and his breathing always got better after both lungs were drained. A nurse had told us that Brian would have the other lung drained the next morning. Brian had requested to have the oxygen set at 10 and for no one to turn it down. He and his doctor agreed, and the doctor had informed the staff to keep Brian comfortable on morphine to help him breath. When I visited the next day, Brian was upset because the nurse turned his oxygen down and they didn't keep up on the morphine. He had a rough night, struggling to breath. I asked to speak to the floor nurse, and she put a do not adjust sign on the oxygen meter and discussed the medication issue with the nurses. Later we spoke to the doctor because we were told they were not draining his other lung. The doctor explained there was a miscommunication and that he never ordered the test. He told us there was no fluid buildup on Brians other lung. We were pretty concerned because his breathing was slowly getting worse and now it was no longer due to fluid buildup. I stayed with Brian until early afternoon. That night we had a tornado warning, and a tornado had touched down 1/2 mile from our house. Our neighbor had come over to check on us prior to the storm. He was a good friend of Brians and had seen the ambulance the day before. He came to ask what was going on. I shared with him that Brian was in the hospital with stage four lung cancer, and he started to cry a little when I shared the news. I had not share with any of our neighbors and it was hard sharing this news with one we were close to. At the hospital, Brian refused to be placed in the hall during the tornado warning. He insisted on staying in his room, so they shut the blinds and closed his door. He was fed up with the staff and just wanted to sleep. He was on the third floor and was only there a few days. He was stubborn sometimes.
One morning he called me before I left to visit to let me know they moved him to the fifth floor, which was the critical care unit. His breathing wasn't getting any better and he needed special care. At least he was in better hands, the nurses for the most part were better. His breathing was worse and the doctor on duty was concerned for him. She had requested more x-rays, and she couldn't figure out what the cause was. She contacted Brians oncologist who was not on duty, and together they reviewed and discussed Brians x-rays and CT scans. She shared this with us and then began telling Brian he might want to consider Hospice or a ventilator. We were shocked and had no idea where this was coming from; it was so abrupt and out of nowhere. She was basically saying there was no hope. She did tell us that the oncologist would be there at 6:30 am to discuss everything with us.
Brian really wanted me to be able to meet the oncologist, as did I, and in order to make that happen, I had to trust Jen and Kora to get ready for school and get on the bus without me. I made it to the hospital around 6am. When I got there Brian was telling me about this nurse Paul and how funny he was. Brian had a rough night, but this nurse made him laugh and get through it. Just then Paul and his replacement nurse came in. Paul was hilarious and was telling me that Brian slept a lot and while Brian slept, he gave him a sponge bath then posted it on social media. Of course, it was all a joke, but it was really nice to see Brian laughing hard. It hurt him but it was worth it. The Oncologist never showed up and we waited ALL day. It was now after 6pm; Brian said sometimes he comes around 6pm if he doesn't make it in the morning so I waited a little longer. Brian needed something from Walgreens, so I ran out to get it before going home. I had just pulled into Walgreens when Brian called asking me to come back because the Oncologist was there. I turned right around and rushed back to the hospital. The Oncologist explained that they needed to start Brians chemo right away. We shared what the other doctor told us about the ventilator and Hospice, and he was a little upset. He explained all the options to us and Brian decided to have chemo. He explained that there would be three rounds, and each round consisted of a chemo infusion and then a three week wait until the second infusion. The total time would be 9 weeks before we would have a prognosis. The Oncologist explained that he will be very weak, and many people give up around day 10 and day 14. He said those are the toughest days after chemo, but don't give up. The next day, they put the pic line in. It was a scary but a hopeful time. We now understood that Brian was not able to get the PET scan they required to see if there was cancer anywhere else in his body other than his lungs and liver. Insurance does not cover the PET scan while the patient is in the hospital, so unfortunately, Brian could not have it done. It didn't matter because chemo is not selective and targets all cancer no matter where it is in your body. I don't understand why they didn't start it sooner.
Brian did very well with his first chemo treatment. He didn't get sick, but he was extremely weak. His breathing didn't get better and just kept getting worse. Two days after chemo, he was tired of suffering and living in fear. He wouldn't sleep and hadn't slept since this all began. He was terrified to be alone at night because when he would start coughing, he couldn't breathe, and no one would know. Even if he pushed the call button, the nurses didn't respond for several minutes. They were short staffed so sometimes they didn't respond at all. They were giving him morphine and Ativan and the Ativan was really making him hallucinate. I hated seeing him on that stuff, I saw no purpose for it. They said it helped his breathing, but I don't think it did. It just made him trip really hard and he was so afraid of dying, which is what he imagined constantly. I stayed overnight with Brian whenever I could. I didn't have anyone who could stay overnight with the girls and get them off to school every day so I could only stay when I my daughter could stay with the girls. It was so hard because I wanted to stay with him every night, but I couldn't, and I felt guilty for leaving Jen and Kora by themselves each evening. In the beginning I was home shortly after they got off the bus at 3:30. As Brian got worse, I wasn't getting home until around 6 and sometimes later. My daughter Brianna would stay the night when she could, but she also worked and sometimes didn't get to my house until 8pm. I felt horrible that I couldn't be there for the girls and for Brian. It felt like I was living a double life, and both were filled with guilt and pain. I was at the hospital every day and the ladies at the reception desk knew me by name and automatically filled out my guest & room sticker without asking questions. On the nights I was able to stay with Brian I slept in a very uncomfortable recliner. There were nights where I slid it right up to his bed because he wanted to be close to me. This made it hard for the nurse to get to the IV so that didn't last long. I eventually turned the chair at night to face him so when he woke up, he would see me, and I could do the same. He was so afraid to be alone at night. I hated leaving him when I had no choice.
It was Valentines Day - two days after his first treatment I believe, and he wanted to have a DNR bracelet. Brian and I both agreed years ago that neither of us wanted to be resuscitated. We talked about it this day and we agreed it was the best decision. We both knew that God was in control and Brian wasn't getting any better, so we spoke the team, and the decision was made. Brian was sleeping when the nurse came in and put the bracelet on his right wrist, I started to cry and the nurse gave me a big hug and as we were hugging and crying, Brian woke up and said, "hug it out bitches." He had a great sense of humor and kept that until the very end. He asked me why I was crying, and I showed him his wrist and he began to cry. To lighten things up I said, "some Valentines Day this is" and we both laughed. We had to explain to the nurse that one Mother's Day years ago, Brian told our son who was about 6 at the time, to help clean the house. Our son said, "Some Mother's Day this is" and we used that phrase throughout the past 20 some years. The reality of that wrist band really hit us, but I believe we both knew God was in control no matter the outcome.
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. I then had a private conversation with her about how Brian was doing. She shared that sometimes people fight with their minds, but their body will not fight and fights against them. She believed that Brian was fighting with his mind to beat the cancer, but his body wasn't, and she believed I knew it too. I admitted that I did, and I remembered a few nights back, the doctor on duty, the one who mentioned the ventilator, noticed Brians urine was really dark red. She told us he probably had internal bleeding and there was nothing they could do. They could do a scope to view for internal bleeding but because he was too week he wouldn't survive it. I asked the NP how long they believe Brian had cancer and if they believed he had it for years. She said based on what they are seeing, he has only had it 2-3 months. She suggested bringing the girls up to see Brian and then have our kids visit to see if that would inspire his body to fight. I agreed so she spoke to someone in charge and got permission for the girls to come up every day if we wanted and for me to stay every night. I later talked to my daughter Brianna to plan to bring the girls up in a couple of days.
The next day when I arrived at the hospital Brian had a huge blue tube in his nose to push out oxygen at a high level. His breathing got worse overnight, and he needed more than what was connected in the room. They had to bring in a special machine to push out oxygen at a higher level. This caused a nonstop nosebleed. It was so hard seeing him like this. I had to prepare the girls and Brianna about the hose and how weak Brian looked. It was an ok visit with the girls and I'm glad we did it, but Brian and I agreed they should not come up again. I think it was painful for Brian to have them see him like that.
The next day, our three kids came up to see Brian. I also prepared them about the blue hose and the medication. Brian asked for the medication to be delayed so he would be a little more clearheaded when the kids were there. They arrived much later than we expected, and I was worried about his pain due to the lack of medication. He was a little out of it at times while they were there, and he was agitated with me once because he thought I said something about him in past tense. He also freaked out a little when he saw our daughter's reflection in the window; I had to shut the blind to show him there were not two of her. When visiting time was over, I walked the kids to the elevator and our daughter Brianna asked if this was the last time they would see dad; I was honest and said "It might be. All we can do is pray." It was a visit I would later regret.
My story is being shared to help others so please feel free to comment or ask questions.
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