I'm recording this while I still remember it. It's not eloquent or edited. It contains some indelicate details. It's long and overly specific but, such as it is, here it is. Feel free to read it if you'd like. Hello, friends.
Update: I came back and edited it a little the morning after I posted it. Too many typos. I couldn't abide them.
At UTA, after the scholarship banquet was over at about 9:00 PM on Saturday night, April 14, 2012, we were waiting outside in the cool evening for the valet to bring my car. Although we weren't the last in line, everyone else was gone for several minutes before they brought mine and I was starting to get worried that there was some problem. Then, to my relief, my green Prius pulled up. Robyn climbed in the back, I helped Susan into the car, tipped the valet, got in and drove away. Susan loved UTA and she wanted to drive by a couple of buildings on campus to show Robyn and tell her about them. Susan was always more enthusiastic about things than the rest of us. Robyn and I wanted to head home, but we humored Susan and drove by the buildings with a passably good attitude and only the slightest tone of impatience.
I don't really remember anything about the drive home after that.
When we arrived home at almost eleven, Susan called River downstairs, upset because he hadn't done some chores he agreed to do. She got a bit too angry about it, as she did occasionally when she was on so much medication, but she got over it quickly too. At 11:36 PM I sent River a text that said, "Sorry mom got so upset. Just try to overlook her behavior. She's not exactly herself. Love you. Good night."
I don't remember what happened after that. The next thing I remember was Susan waking me up some time between 1:00 AM and 2:00 AM. She was nauseated and vomiting. She always kept two emesis basins beside the bed. One, already full, was sitting on her desk beside the bed and she was holding the other, mostly full. She needed me to empty them. Groggily I rose and carried the one from the desk into the bathroom. Looking into it before I dumped it, I saw that the contents were bright red. "Susan? Are you coughing up blood?" I asked.
"No, I had three red popsicles before I went to bed."
It made sense to me. I dumped and cleaned the basin, took it to her, got the other (also bright red), dumped and cleaned it, took it back to the table and went to bed.
A little later - I'm not sure when - she woke me again. Once more I emptied the basins of something bright red and cleaned them.
At a little after 4:00 AM she woke me a third time. Yet again I emptied the basins of something bright red and cleaned them. I was a bit more awake and became concerned. "Susan," I said, "this looks like blood. I think we should go to the hospital."
"No," she said. "I had popsicles. I don't want to go to the hospital."
I came and sat beside her on her side of the bed. Her eyes were closed and face was bowed, hovering over an emesis basin she was holding in front of her. "I think we should go to the hospital."
Then I heard a faint gurgling sound coming from under the blanket. So I lifted the blanket. There was a shocking amount of blood coming from between her legs. I felt a jolt of panic and I jumped up and rushed to the phone to call 911. I told the woman who answered that my wife was bleeding badly and she told me within seconds that an ambulance was on the way. I stumbled to put on some clothes while I talked to the operator. Susan hardly reacted to any of this, and that's when I realized that she was mentally foggier than usual, something I hadn't recognized earlier.
I woke up River and let him know what was happening. I told him to listen for the door while I dressed. Robyn woke up too and came downstairs.
The firemen showed up first. I worked with them to unhook her TPN from her IV port, answered questions and signed paperwork. Then the ambulance showed up. I told them which hospital we should go. I picked Baylor All Saints because she'd had a procedure there on Friday and I thought the bleeding might be related to that. They picked her up with the sheets still wrapped around her, put her on the stretcher/gurney and wheeled her away, telling me not to try to follow them, just to come at a safe pace.
The ambulance left. I finished some paperwork with the firemen and they left. I gathered Susan's normal hospital supplies and papers and gave the kids some instructions. "This is not the end," I said to River and Robyn. "This is just something we have to get through." I left for the hospital. It was almost 6:00 AM at this point. I drove to the hospital. On the way I called Katie, Susan's twin sister, and told her what happened. She said she would come up to the hospital later. I got to the hospital, parked, followed the signs to the ER, and was directed to the room where Susan was being cared for.
They were cleaning her up. "Do you want these sheets back, sir?"
"No. Just throw them away."
"What about this pillow?" The EMTs had brought her pillow. She loved that pillow.
"Yes," I said, and I took it from them.
Her blood pressure was dangerously low. (I don't remember the actual numbers.) She was mildly hypothermic. They got her clean. She was foggy, but she was talking. She said she was cold. They put this plastic bag thing over everything but her face and inflated it with hot air to get her temperature up. They wrapped warm blankets around her head. Soon she was complaining that she was too hot, but they said she still needed the warmth.
A doctor - I don't remember her name - came to me and asked me what had happened. I told her everything I described above. I told her Susan had been in this hospital on Friday (it was early Sunday morning at that point) for an EGD to try and put a stent in her liver but that they couldn't complete the procedure.
"There was too much cancer. The doctor said it was 'encasing' her liver. There was no approach."
She made notes and told me they were admitting Susan to the ICU, Room 10. Soon we were on our way up there. It was probably about 7:30 AM. They told me to wait in the waiting room while they got her settled in. I sat there for a while, then someone came to get me.
"We're giving her blood," she said. "The doctor is on the way in. Once the transfusion is done and she's stabilized, we're going to do an EGD and try to find the bleeding."
"Ok," I said. They led me into ICU room 10. I greeted Susan when I came in. She responded but she was very groggy. I sat in the chair in the corner of the room and tried to stay out of the way. Susan seemed to be sleeping. Everything was calm.
After a few minutes, probably a bit after 8:00 AM, the doctor came in and asked me when Susan last ate.
"She had some popsicles late last night," I said.
"I don't know. I was asleep."
"It was midnight," Susan said from across the room. Those were her last words.
At this point I just sat in the chair and waited. At one point I asked if there would be time for me to go get my insulin from the car and eat something before the EGD.
"Sure," the nurse said. "There's no hurry. It will take a while for this blood to infuse."
A few minutes later, the monitor started to beep. I was not concerned. They do that all the time, and the nurse came in immediately to check on it. A couple other nurses came in. They talked softly and seemed perfectly calm to me. I thought everything was fine. I just sat there in my chair.
Then, after a few more minutes, the nurse turned to me and said, "This heart rate is not sustainable."
"Ok," I said. I didn't get it.
"And she's a DNR, right?" the nurse asked. (DNR stands for "Do Not Resuscitate," meaning Susan wanted no invasive or heroic measures to bring her back if her heart stopped. She didn't want to end up on life support machines.)
"Yes. She is," I said. "That's what she wants." I still didn't get it. It's not unusual for them to ask about her DNR status in the hospital.
After another minute or two, the nurse said, "Her breathing is very shallow. Would you like to spend a minute with her alone?"
At that point my heart skipped a beat. That's literally how it felt. It dawned on me what was happening. "What?" I said. "What do you mean?"
"Would you like us to go out so you can be alone with her?"
"Is she...?" I didn't finish the sentence.
"Probably," she said, but that wasn't what she meant. She meant, "Yes."
I was shocked. "Is it pretty certain? Should I call people?"
"Yes, you should call people."
I stepped over to Susan and took her hand, but she didn't respond at all. I put my hand on her face and in her hair, but she didn't react. I reached down and opened her eyelid and leaned in close. "Susan?" I said, but she didn't seem to be aware at all.
Then I stepped to the window and got out my phone. I called Katie and told her to get up there. I called Billie, Susan's mom, and told her she needed to come up there. I didn't tell either of them what the nurse said, but I assumed they understood. I called Susan's older sister, Patty, and spoke with her husband, Michael, and told him what was happening. I called River and told him to get the girls and come up there immediately. I tried to call my mother but I couldn't reach her. At this point it was probably 9:20 AM.
After I hung up I went to sit by Susan. I tried to stimulate her or elicit a reaction, but she was not at all aware. I sat watching a number on the monitor - I don't know what it was measuring - as it fluctuated and got slowly lower and lower. In my mind, it would go to zero when she was gone. It hovered in the fifties and then the forties. I struggled to believe this was really happening. Turning to the nurse, I said, "Is this for sure? Could she still come out of this?"
It was 9:29 AM on Sunday, April 15, 2012. The nurse looked at the monitor and then put her hand on my shoulder and said, "Honey, she's already gone. I'm so sorry. I'll leave you with her."
A sob started to come, but I held it back because the nurse didn't leave. She was fussing around with tubes and needles, trying to clean Susan up for the people on the way. In my mind I was thinking, "Would you get the hell out of here, please?" but I didn't say anything.
Then, after what seemed like a long time, she left. I pressed my face to Susan's and sobbed for several minutes. I told her I loved her and that I was sorry. I felt bad then and several times later, for just sitting in that damned chair trying to stay out of the way while she slipped away. By the time I engaged with her it was too late. She was gone. I was pretty torn up, but I pulled myself together after a bit and started thinking about the people on the way. I stood up and stepped over to the window. I got in touch with my mother and told her Susan was gone. She said she was coming up there. Then stepped just outside the door to meet people as they arrived.
Katie arrived first. I didn't say anything, but she could see in my face as she got close what had happened. She was tearing up before she walked through the door and went over to see Susan.
Then Billie, Susan's mother arrived with a friend she had brought along. She asked me how Susan was and I told her, "She passed away." Billie was inconsolable and loudly distraught for several minutes. Katie tried to comfort and calm her, then Billie went over to sit with Susan.
Now I was waiting for my kids. I called River and he said they were in the parking garage. I stepped out of the room and went into the lobby by the elevators to meet them. I saw them walking across the rotunda below to the elevators. Then they got off on the second floor and walked over to me. I told them, "Guys, Mom died." Robyn and Rayn started to cry. River was more stoic. We all hugged for a long time, and then we walked to ICU room 10. The nurses watched us walking in and I'm could tell they realized these were Susan's children. We got to the room. Katie and Billie hugged the kids and then Robyn and Rayn each sat beside Susan and cried and held her hands and said goodbye to her. River pulled another chair up nearby and sat quietly.
After a few minutes my mom arrived. She hugged everyone and then said goodbye to Susan.
That was it. I started calling the funeral home. Eventually Billie went with her friend to have a cup of coffee and calm down. My mom and River went for a walk. A nice, well-meaning chaplain hung around awkwardly for too long. I finally told him Susan was a Christian and would appreciate a prayer. He gladly led us in a prayer and soon after left, much to our relief. Billie came back, said goodbye to Susan and left. My mom left. The kids left. Katie and I stayed until the funeral director arrived with his gurney. We wanted to wait until he took Susan away, but he gently insisted that it would be better for us to leave before he began to move her. So, we left.
I loaded Susan's things into the car and thought for the first of many times, "These papers and medications were so important and now they don't matter at all. The person that gave them meaning is gone." So strange, for a person to be gone. She was a part of so many systems and groups and plans and she was gone. I still don't fully comprehend all the ramifications.