My husband is Mario. He died at our local hospital in October 2018. He had cancer. He fought the battle against cancer for 8 years. Before cancer, he had a rare autoimmune disease. The medicine the doctors used to control it contributed to his development of the cancer. In total, he had 10 years of fighting for his life. During this time there were many very good and amazing days and months. Here, I want to recount his last week of life. I’m writing about this difficult time because I want to honor him and our relationship. I also want to share our experience so that others can learn what they can from it.
Mario had lots of ups and downs during the years of his fight. He always seemed able to recover from them. At one point he was down to 90 lbs in weight and I didn’t think he was going to make it. Then he started eating, his energy came back and all was well. He did this several times. I began to think of him as my Energizer Bunny. He was full of energy and love of life. His super positive attitude drew people to him. We both loved each other and he would do anything for me as I would do for him.
The cancer spread from his esophagus to other parts of his body. It’s last stronghold was his lungs. We were able to control it for a while with chemo and radiation but it became resistant. The doctor decided that we should try another treatment. It was a drug you might know by the name, Keytruda. This treatment turns the immune system against the cancerous cells but it takes time to do so. We knew we were taking a chance and we were down to the wire but it was the only hope.
During this time, he lost his appetite again. While his weight was dropping, I became his cheer leader. “You can make it through this! You’ve gone through it before. You are at a low point and we need to let the medicine have time to work. Hold in there.” You see, I believed it would happen. I believed it with all my being. Except that he kept getting worse.
The cavity around his lungs started filling with fluid which made breathing difficult. He could not inflate his lungs to breathe. He felt he wasn’t getting enough oxygen. We spent a few days in the hospital. There they installed a pleural tube to help drain the fluid from the cavity around his lungs. I would have to connect a bag to the tube and drain the fluid into the bag several times a day. If I drained it too fast, it would cause pain. It seemed to create discomfort no matter what I did though. I was still seeing it as temporary. If we could make it through this, life would be great once again.
It was during this time that I had to connect him to an oxygen tank and an oxygen machine. For me, it was a minor nuisance compared to everything else. It was for his well-being. Bear in mind we had tanks and tubes all over the house for his mobility. He still had the strength to go up and down the stairs albeit slowly. This was also when, I heard him becoming afraid. I remember his words, “Mark, I may not make it this time.” When I heard those words, I paused for a moment and said, “Mario, that has always been the case and you have always come back. Why should this time be any different for you? Don’t give up, there’s always hope.” My words exactly. I remember this moment with clarity. You see, I was aware that death was always a possibility. He refused to hear the things the doctor told me. When we started this journey, the doctor told me that only 3% of people make it through the first year. Mario beat the odds over and over. He was a miracle, my Energizer Bunny.
My filtering of information was one of the things that helped him to live longer. Mario was very clear. He didn’t want to know the side effects of the drugs, radiation, or the predicted outcomes of anything. I talked to the doctors and filtered the information that he received. It was difficult. It did work well for Mario and he didn’t have his mind filled with all the possible horrors of side effects.
The Saturday before we returned to the hospital he had strength. He actually ate full meals. He was happy and had many things to talk about. He was looking forward to a future vacation and started talking about it again. I thought that this was the turn-around. He was starting to get better once again. That night, I woke up and he told me that his hand was numb. I thought he had slept on it and told him to roll over. He didn’t say a thing about it again.
On Sunday morning, he was quieter than normal. If you knew Mario, he loved to talk and would seize any moment he could to do so. I asked him what was wrong and he told me he wasn’t feeling good. I didn’t know what the problem was but he said he wanted to wait and I agreed with him. By the afternoon, he was feeling worse. He was feeling very weak and I asked him if he wanted to go to the hospital. He replied that yes, he did. I felt my heart sink. I asked him if he felt he could go down the stairs and he said, that he felt too weak. So, I called an ambulance for him. They arrived in a short amount of time and I drove in my car to the hospital. He went to the Emergency Room (ER). It took hours. They ran a lot of tests and they showed he had elevated levels of a hormone that indicated his heart was in stress. They decided to send him up to the Cardiac ward. I thought great, he is in good hands now and I could go home and try to get some rest. It was 1:00AM at that time.
When I returned in on Monday morning he was on the cardiology floor. They had attached all sorts of IV bags to him. They were giving him fluids to hydrate him as well as provide necessary nutrients. They had also started a dip of antibiotics. He had pneumonia which would explain his weakness and not feeling good. We spent the day together in the room. I remember holding his hand while he was doing a lot of the day sleeping. He always felt more comfortable with me holding one of his hands. It also made me feel better too. I had asked him if he wanted his computer. He always liked checking the news and checking on things with family and friends on Facebook. He surprised me when he said that he didn’t want it. I also asked him if he wanted to see anyone. He told me no. He wanted only me there and said that I should prevent anyone else from visiting. It wasn’t a surprise for me. He had said this in the past, when he got his pleural tube that he didn’t want people around. I think he was feeling embarrassed about his body. He was so thin, he had scars from many operations, he didn’t feel good. For me, it was an indicator that he was feeling very down and in a state that he really only wanted me to see. I kept wondering where his oncology doctor was. I never did see him the time we were there. I assumed that he was gone or not available for some reason. I had gone down to oncology to talk to some people and thought that someone would tell him. It apparently never happened.This day was an ebb and flow of people in and out of the room. Mario was doing a lot of sleeping, and I was sitting there with a lot of anxiety. By evening of that day, Mario was telling me to leave that it was too much. The day had exhausted me as well as him and I went home with promises to return in the morning.
When I returned early on Tuesday morning, I didn’t see any improvement. He seemed the same as on Monday, no worse. At one point that morning, while I was holding his hand, he told me that he couldn’t feel me. I asked him what he meant. He said, “I can’t feel your touch.” I asked him to try to squeeze my hand and he couldn’t. I thought, he was dying that moment. I could feel my heart beating in my chest. I immediately ran out in the hallway to find a nurse and she called the doctor. The doctor came in with a group of interns. They confirmed, he had a stroke. The thing I heard the doctor say was that this was very common for people who have lung cancer. Of course, this was the first time I had heard of it. The thing that bothered me the most about this moment was that no one seemed alarmed. No alarms, no sense of urgency and no one even said, “I’m sorry.” It was almost like they had already decided that he was dying. They did order more tests including an MRI which they took a very long time in doing. I was angry at this group of people. Here, my love could be dying and they were cold and insensitive to it all. That is what some people would want. I would have liked to feel that the love of my life was had some level importance to them as well. I didn’t get that impression at all. They were all cold and distant.
By afternoon, I went home to take a nap with the idea that I would be back in a couple of hours. Napping at the hospital is impossible. There was too much noise from the patient sharing the room, too many people, too many machines. I told Mario that I would return. Not the best choice but I was working under total exhaustion and stress. As soon as I walked into the house the doctor was calling. He said he needed to talk to me. He told me that this was most likely Mario’s new baseline. That we could hope for no improvement from this point. He said that he had talked to Mario and Mario wanted me to return which I immediately did. When I walked into the room, I could barely hold back my sobs but I did. I wanted to be strong. We talked about what he wanted. He said that he didn’t want to fight anymore. That he had enough but he wouldn’t leave me unless I said it was ok. I realized that it was time and told him so. I told him that I would survive and I would continue to do anything for him. At this point, he told me he wanted me to live a full life. If there was someone who I should meet in the future, that I have all his support. We talked about our good times and what a blessing we had been for each other. We had enriched each other’s lives. The nurse came into the room. Mario told her to disconnect the IV’s. He had decided it was time for him to die. This was the hardest thing in my life to have witnessed. That gradual disconnection of the bags and tubes was saying goodbye to all hope of a future together.
They moved him to a private room a little later to allow him quiet. I went out to the Respite House. It is a beautiful place that helps patients to pass on in a peaceful environment. Unfortunately, they had no bed available at that time. They said they would move him out there as soon as there was an opening for him. I went back and told him about the arrangement. I don’t remember much about the rest of this day.
On Wednesday. The new room that Mario had in the hospital was so quiet and peaceful. He shared the earlier room with someone who had major problems. He was a very noisy person and there was no quiet at all. This day was also Mario’s birthday. I had brought the birthday cards with me to the hospital. He refused to look at any of them. It was a surprise to me because he was so big into his birthdays and he celebrated them all month-long. I did not push him at all with this. I felt my sadness deepen. I realized he was further along with this than I was. We have a law in Vermont that allows for physician assisted suicide. Mario asked about it, but unfortunately, it was not an option for him. It’s something that we needed to plan months in advance which we never did. He told me how afraid he was. I agreed with him. I told him that I was afraid too. We hugged each other. I did not want him to go through this. We both lost ourselves in our own thoughts. He wasn’t eating a thing at this point and not drinking any liquids. He struggled to talk. We spent the day together. Wrapping each other in as much love as possible. I went home that evening after giving the nurse instructions to call me if there were any changes.
Thursday gives me nightmares even now. It comes to mind again and again. I have so much anger at the hospital. It was a sunny day. I walked up to his floor and walked into his room. There was a man there who was ill, sitting at the side of the bed with his wife. They were looking out the window and she looked very concerned. She was stroking his back. I at first thought, I had entered the wrong room and then went to the room next door. No, that wasn’t it. My next thought was that Mario had died and no one had told me. I was close to collapsing in the hallway with the level of stress that I was feeling. It was the most horrible sensation. I went to the nurse’s station and asked where Mario was. Their first response was Mario who? I told them the patient that was in room 525. They had no idea. More panic for me. They had moved him to another ward without any word or contact with me. At the nurse’s station they said they needed the space for a new cardiac patient. They had moved Mario to a different floor and told me where to go. When I arrived at the floor, I realized it was one for people with dementia or who were insane. There was a lot of noise. People were wandering all over the place – a nightmarish scene. I found his room. There was another patient in it as well. What happened to the private room? I walked in and there he was. He was very happy to see me but he was more confused mentally. They had given him morphine. He was having trouble speaking but gasping between words he asked me if this was the Respite House. I felt horrible. I explained that it wasn’t. He also did not have his pants on. No one knew what happened to them. Oh god. So much disrespect for this beautiful person. There was no dignity here and no one seemed to care. My heart felt like it could go through my chest. I called the oncology social worker. I had her business card because I had talked to her on one of the earlier days. The situation upset her. She called to make arrangements to get him out of this floor. She wanted him moved to the oncology floor where he should have been from the beginning. It took several hours but they finally got him there. I can not describe the stress that this day caused me. Mario was so confused too. Such a sweet, beautiful, incredibly intelligent man. The situation crushed my spirit and faith in people and the hospital. Mario at this point could no longer carry on a conversation. He kept asking for more Morphine and was very much out of it. It was obvious that his end was near. I kept praying that he would have a day at the Respite house.
I went home very late that evening with instructions that they were to call me should there be changes. It was a different floor and the nurses seemed much more capable and confident. I didn’t even need to teach them how to use his pleural drain. That was a relief for me.
I didn’t stay at home for very long. It was about 1:30AM when the nurse called me to tell me there had been a change. I had slept in my clothes. I had been too exhausted to take them off to begin with. I rushed in. I wasn’t sure that he was aware that I had returned until I got up to go to the bathroom and told him that was where I was going. I saw him move his head a little as if shaking yes. By 4:00 in the morning, his breathing would stop and start. There was a longer and longer pause between each breath. I was sitting by the bed stroking his arm and holding his hand the way he liked. He had his eyes opened but unfocused.
At 6:40 AM in the morning he took his last breath.