June 30 - July 4, 2020
I took the long way home, as I wanted a long period of time to talk to Scott's cousin, and one of my BFF's and major supports to me through this process. Scott had gone home earlier with the kids so I was alone in the car and could have an open, honest conversation with her without little ears listening in. Yay! I told her all about Mexico and gave her the latest updates. It was wonderful to talk to her again; we talked for about 30 minutes. As I drove up to the house, our eldest son called. I ignored it so I could finish my conversation with her, besides I would be inside in a few minutes. He called again. I ignored it again. When he called the third time, I told her I should probably go since he was calling again; I thought maybe it was a little important if he was calling over and over again. I hung up with her and answered his call. He asked me where I was and I told him I was right outside. He told me I needed to come inside - Dad had a fever. He checked it and it was 101 degrees. Oh great! I thought. Now what?
I came inside and up to my bedroom and my husband was lying on our bed with our oldest son by his side. I felt his head and he indeed was hot. I gave him a Tylenol and went in the living room to call the after hours nurse. I didn't want to. He'll be fine; he just needs to sleep it off. Then I thought of a story shared with me from one of Scott's co-workers whose husband had died of the same type of cancer that Scott had. She said her husband had a fever and she felt like she waited too long to take him the hospital when he was feverish and he died later that night. I didn't even want to go there yet. I wasn't ready. We weren't ready. He hadn't even seen his mom yet. He just got home from Mexico. He was weak, but not THAT bad.
The nurse asked me if I had given him Tylenol. Check, I thought. I'm doing this right. I got this! She told me that if his fever hadn't gone down in a half hour I should take him to the hospital. Really?! There's a pandemic! They don't let anyone in the hospital. I'm going to have to explain (again) that even though he has all of the symptoms of COVID, he doesn't have it. HE HAS CANCER! And way more people die from that than COVID! I'm so sick of this! I hung up with her and went back in our room to give Scott and our son an update. He and our son had had a good talk. My son told me later that it was kind of like an end of life talk, like his last words. He listened patiently, but knew that his dad had more time. Scott was in pain and unsure of what to expect. I'm glad he took the time to talk to our son. He encouraged him to live a life of service, to others and the Lord. That's how Scott lived his life, so I'm not surprised that he encouraged our son to do the same.
I waited 45 minutes to take Scott's temperature again. I was procrastinating. I don't remember how we passed the time; I'm sure we talked and cuddled and prayed, but I honestly don't remember. His temperature hadn't gone down. It was time to go to the hospital. Scott was very weak and I knew I couldn't help him to the car by myself. I asked our oldest son to help me. We sat him up, and one of us was on either side of him as we helped him into the car. Our son drove to the hospital with us too so he could help me unload him. When we got to the hospital, there was a long line of cars waiting for COVID tests; blah, blah, blah. We found a parking place close, since the cars there were just there for drive-by tests. Our son and I helped Scott into the lobby. I immediately asked for a wheelchair and began rattling off my husband's issues, not even waiting for the typical questions of "Does he have any of the following (COVID) symptoms?" Uh yah, but he doesn't have COVID, just stage 4 cancer! The nurse told me that I could go back to the check-in desk with him, but not the ER. I was concerned about that, because I didn't know how coherent he was and I didn't think he could answer the medical staff's questions about his symptoms. I expressed that to her as she wheeled him back and she told me to tell the people at the check-in desk the same thing, which I did, to a rather unsympathetic clerk who gave me a phone number that I could call every hour for updates as they wheeled him back to the ER. I gave them my number also. I sure as hell hoped he'd be ok cause I didn't even really say goodbye. As I drove home with my son, I knew it was going to be a really long night. It was already about 10:00 PM and it was only beginning.
When we got home, I told my son to go to bed, but he didn't want to. He wanted to stay up with me and get updates too. I told him he could stay up as long as he wanted to. I can't remember how long he stayed up, but he did eventually go to bed. I definitely didn't sleep much that night. I think I slept on the couch and set the alarm on my phone to go off every hour. I don't remember how many phone calls there were, but I remember that the last one was me talking to the doctor and he was telling me that they thought it was a good idea to admit Scott, as his fever was off and on and they wanted to get it under control before they released him. He encouraged me to talk to Scott about it and make the decision for ourselves. I appreciated that. At least they allowed us some say in the matter and I didn't feel bullied into making a decision that we weren't ready for. All of the tests that had come back were negative - COVID negative, infection negative from the blood taken from his arm. They also did another CT scan on his chest, abdomen, and pelvis, with all the tumors increasing in size. They also needed to rule out sepsis, which can be scary, especially for cancer patients. They were still waiting for results from the blood they had taken from his port. If that came back positive for infection, that would explain the fever, but they'd have to wait a while for those results to come back, so they recommended that he be admitted to be monitored while they waited for test results. Scott and I talked about it and decided that the hospital would be the best place for him at the moment while we awaited those results. If I had to do it again, I think I would have taken him home while we waited for results. He wouldn't have been as bored or sad, and we could have seen him face to face, instead of through glass, but hindsight is 20/20. A crystal ball would be nice to tell the future, but maybe that wouldn't have been good either, if I knew what was in store.
After I hung up with Scott, I went to bed for a few more hours of sleep. My fatigue outweighed my anxiety and I did get a restful few hours.
The next morning I called Scott's doctor to give him an update, even though the hospital said they would contact him. It's not that I didn't believe the hospital (well maybe I didn't just a little bit) but I wanted to personally talk to him and not get the information second hand. It's always hard to sort out when that's the case. I left a message asking for him to please call me when he could. Scott's main concerns at this point were his fever and his stomach. It hurt a lot and he couldn't eat. I was concerned too; how would he get nutrients into his body if he couldn't eat? I called Scott later that morning and asked him to ask about visitors and to let me know and to call me when the doctor came. He called me back around noon and said that he was told that he could have two visitors at a time and asked me to bring him some stuff. He still hadn't met with a doctor. I gathered up the things he asked me to bring and headed down to the hospital with my daughter to go visit him. We were excited to see him. I was hoping to talk to a doctor, or even a nurse, to get an update straight from the horse's mouth rather than second hand.
When we arrived at the hospital, we went to the front desk and said we were here to visit the patient in room ??? The receptionist then told us that there were no visitors allowed. "That's not what the person on medical staff told my husband when he asked them today," I replied. She then explained that because of COVID they could not permit visitors but she would be happy to deliver his things and offered for me to talk with one of the nurses working in the department where he was staying, so I could explain that to her and to get updates on him. I wanted to offer to take a rapid COVID test right there since I knew I didn't have it, but didn't want to embarrass my daughter. I talked with a nurse and she gave me an update and told me that he still hadn't been seen by a doctor but he would call me when that happened. I hung up with the nurse. The receptionist then gave me a map of where we could go to "visit" Scott through his hospital window while talking to him on the phone. My daughter and I went to go see him. He was depressed and he wanted to go home, but he wanted to figure out what was wrong first. I told him to call me when the doctor came and I'd call him when I heard from his doctor.
Later that day, his oncologist called me. I said he had not yet talked to Scott’s doctor, he’d just received a brief update from the ER medical staff, and he’d received my messages. I expressed my concerns about Scott’s appetite; he wasn’t really eating and that was concerning to me and asked him what could be done about it if he continued to not be able to eat. He said he may eventually need a feeding tube (that was hard to hear). I knew Scott would rather die than have that happen. I asked him to please continue to call the hospital to reach out to the doctor for updates and I would do the same. I think the hospital staff got sick of my constant phone calls, but I didn’t care. I wanted answers. If my husband wasn’t going to be seen by a doctor, why should he be there?
Almost 24 hours after we took him to the ER, his doctor finally called with an update. He briefly went over the scan results which the ER doc had reviewed with me; the tumor in the liver was bigger and the lung tumors were increasing as well, in size and number. They were still waiting results from the blood test they had taken from the port. They had to let the bacteria grow in the culture for a while to see if it was infected, but in his best judgment, he thought it was infected and would need to be removed. He said Scott did not have sepsis, (thank goodness) and they should know more the next day (July 2nd) after the culture had collected more bacteria. It would soon be the 4th of July and if he needed surgery for his infected port I was concerned it wouldn’t get done before then because medical staff would be gone for the holiday. As I listened to all of the information that the doctor told me about my husband, I really had a sick feeling that his time was short. I sure as hell hoped that he didn’t die in that hospital; my kids needed to say goodbye. What I got out of the conversation was that Scott was going to sit there for the next few days while they awaited test results. I wanted him home so he could be with his family. I expressed this to the doctor and he said he could check himself out at any time. I asked, through tears, if he got to the point where the medical staff thought he wouldn’t make it, if I could bring our five children in to say goodbye to him. He said of course they wold allow that, but in the back of my mind I highly doubted since they were so strict on visitors. He then told me that honestly he didn’t think he was to that point; he said, very non-chalantly, “he probably has weeks, if not months, left.” I remember those exact words. It still doesn’t seem real. Being a doctor must be really hard when you have to tell a patient’s family that they’re going to die. I was used to that by now, that’s what all the other doctors had said, except the ones in Mexico. It still stung just the same hearing it from this doctor as it did coming from his oncologist almost 18 months before.
The next day I went with our son to visit him. I dropped off more things at the front desk before heading back to his window, and I could have sworn that the sign said COVID patients were not allowed visitors, but didn’t say anything about the rest of the patients. I know the hospital wasn’t very full. I got that sense from the first visit, and Scott even told me there weren’t that many patients there from what he observed. I promised myself I’d look more closely at the sign if I needed to visit the front desk again during his hospital stay, and that I’d make a stink about being with him if the policy was just for COVID patients. He was COVID negative and not allowing him visitors in his room was just wrong. (I never did have to make a stink because I didn’t need to go to the front desk again, but that sure would have been fun). During our visit, he told me that the tests had come back and his port was infected and he was waiting to hear back from the surgery team about when it could be removed. He didn’t know if it would be before the 4th. He was eating a little better but his stomach still really hurt him; the doctors thought that was because his liver was enlarged due to the tumors and it was and pushing against his stomach. He tried to eat, but his appetite definitely was what it used to be.
I left that day hoping that his brothers, who were in town for our family reunion, would be able to see him in person before they went home. I gave them the information about visitors and I think some of them visited him through the window. Scott called me the next day (July 3rd) and said the surgery was scheduled for that day and he should be released shortly after. Hallelujah! The surgery was quick and successful, and I picked him up later that day. They sent him home with oxygen, which he used intermittently at the hospital, with instructions for at home use.
He was pretty lethargic that night and the next day (July 4th) but we were so glad to have him home. Scott always told me that Christmas was his favorite holiday, but I think it was really July 4th. He LOVES fireworks, especially the loud ones. I was so glad that he would be home for that. We didn’t know if our original location that we usually went for fireworks would even be available this year, due to COVID, plus we usually parked across the street at the hospital to avoid traffic afterward. I KNOW he wouldn’t want to go back to a hospital, even if it was a different one than he had been in, and even if it was just in the parking lot. I found out from my sister-in-law about another fireworks show that was closer to home that she and her family went to every year. We went to that one instead and spread out in the park. It was nice to have some extended family with us this year, as it was the only time that Scott had with them besides the family dinner five days earlier. The kids loved the time with cousins too before the fireworks started. They ran around on the field, the girls braided each other’s hair and we all played games together on the blankets we’d spread out on the grass. Our oldest son talked and showed off his artwork for hours with his cousin just older than him that he hadn’t seen in a long time. Scott told me afterward that he’d never heard him talk that long before; he didn’t think that he could. I knew he could talk for a long time about things he loves, like art, and I’m glad Scott was able to see that side of our son. I don’t think he really tried before as he (Scott) would usually escape into a book to avoid talking with others. He wasn’t much of a talker. I’m glad he had that opportunity to get to know our son better. That fireworks show was the BEST one we’ve ever been to. I think we’ll keep up the tradition.
