My heart is gone

I am writing this from my bed, the lights out, no feeling in the room. I am not in my house, but the house I have been staying in up in Cleveland to be able to be closer to my mom during her transplant.

She died yesterday morning. 11:15am. In the ICU.

It all was such a whirlwind, it all happened so fast. I'm still trying to make sense of it all right now, and I think I am in shock. It mostly just feels like a bad dream. But I know that it's not.

My last post discusses how I just wanted to be left in peace, so I shut off my phone. Mom had sores in her mouth and wasn't up to talking and hadn't been able to talk in several days. I found out that they had put her on TPN, and as a dietitian, I loathe the idea of my mother being on TPN. So I needed a reprieve. I turned it off, and kept it off until Tuesday. I didn't sleep at all Monday night, I was so uneasy and uncomfortable, since I knew she hadn't been feeling well, not even well enough to talk to me. We usually talk about three times a day. And with such a big change of not even talking to her at all, I just figured it would be easier to turn my phone off so I wasn't tempted to try and call her.

I got out of class Tuesday and decided to turn it back on. I had four voicemails. And I knew then that something was wrong. Two of them from Adrian, two of them from my aunt Janny. Adrian hadn't heard from me in a couple days and was worried. Aunt Janny kept saying things like, "Where are you darling? Call me when you get this, I need to talk to you about something." I called her back. "Where are you honey?" I told her I was leaving school. "Well," she said, "I'm sitting in your driveway now. When will you get here?" I asked her why she was there. "We need to go up to Cleveland. Your mom's had a little set-back, it has to do with that infection in her Hickman." I started to panic, and I kept asking "what?" over and over again. Why all of the sudden was I just hearing about this when I had called everyday with the exception of the day before? "We need to go up to Cleveland. Why don't you meet us over at aunt Rita's house?" I already was in Kent, which was closer to Cleveland than my house or aunt Rita's house. I hung up the phone. And I drove to Cleveland. Thinking back on it, I don't even remember how I got there.

I walked into her room and the shock was just so overwhelming. She was sitting straight up in bed, but her head was rolling around a bit, she was too tired to hold it up. But because of all the sores in her mouth and throat, she needed to sit up so the blood and secretions wouldn't choke her. Her eyes were bloodshot and yellow. I started to cry, which I know wasn't good for her to see. Right away, she said, "Honey, I feel better than I've felt in days. Really." She actually convinced me a little. I just cried and held her hand, she was so uncomfortable, which was to be expected after the transplant. But I knew something was wrong, she just wasn't acting normal.

The course over the night made me think that she would not pull out, even before the ICU and the tubes and the unconsciousness. My family was there, my aunts and uncles, even my brother and sister-in-law (my dad's son). She kept asking me, "Do I look pretty? There's a party?" They kept reassuring me she wasn't confused. "You look so pretty, everyone just missed you and wanted to come see you." But when my brother walked in, she looked at my dad and asked, "What's going on? Am I dying?" We had no indication that she was at that point. But we were scaring her, she knew something was wrong.

That night, her blood pressure dropped, and her heart rate increased dramatically. She had pneumonia in her right lung, completely. So she was only working with one lung. She was septic, and her liver and her kidneys were failing. They took her to ICU. They never gave us any inclination that they couldn't fix it. They kept saying, "We can reverse this, but her body doesn't have anything fighting for it." They explained that there were many things they could do. Antibiotics. Dialysis. Medications to help her heart rate, and her blood pressure.

We all walked down to ICU together, us behind her in her bed with the nurses pushing. I remember thinking, "Please God. Don't let this happen." I knew right away, knowing what I know from school, from what I see at my internship, from what I see every week at work, that we needed a miracle.

ICU was alot different than the bone marrow unit. We had to call the desk to be let in. Often times, they told us we weren't allowed back, the nurse was working on her, they were in shift change, sometimes we got no explanation. How cruel. In the ICU, with such critical patients, where every hour could be their last, to not let them have their family near them. I have never ever been more hateful and angry towards a group of people in my whole life. How cruel. How utterly cruel of them. Especially when I'm sure all along they knew she wouldn't pull through.

We sat with her for a while through the past two days, tried to reassure her and keep her comfortable. She kept saying, "I want to go home. I don't want to die. I love you. Please take me home. Please help me." Hearing things like this may even be more excrutiating than the simple fact that she is now gone. How terrible, to not even be able to help her. As her daughter, I would have done anything. Anything in the whole world. I would have switched her places without even considering it. Gladly. I would have done anything. I would have taken her place in an instant. For hours she kept asking me to help her. I would get in front of her face so she could see me, and she would look at me. She say, "Help me," again. I'd smile, and I'd grab her hands with my left hand and pet her forehead with my right. "It's ok. I know this mask feels scary, but it's helping you. Try to calm down and let it help you." She would calm down for a short while, but we repeated this about 7 or 8 times an hour. They gave her medications to calm down, but didn't slow down her breathing or her heart rate, and they had to intubate her. I knew that this was my last chance to say anything to her. I told her I loved her, that she was more important to me than anything in the world, I told her not to be scared, that they needed to help her breathe, and that I would see her later. I told her over and over again that I loved her, and I told her that I needed her, that she was doing such a good job and just to fight as hard as she'd been fighting. It took all the strength I had to kiss her goodbye, walk away from her and leave her go.

They told us to step outside and they would bring us back in after they intubated her. But we waited nearly an hour. We could see through the doors a whole crowd of people around her, we heard alarms going off, and we heard them yell for the crash cart. And we waited and waited. Finally the doctor came out. They explained that after they intubated her that her blood pressure dropped and heart rate increased again, and they were doing everything they could, but she was in shock and the medications were creating a blood pressure for her. He said that we could go in and see her, but only for a few moments.

I have never seen a more horrible site in my whole life. She was laying flat, a tube down her throat, tape over her eyes to keep them shut, her slow rhythmic breathing being controlled by a machine. They said they needed to do dialysis to get rid of the toxins in her body, and that she may be stable enough tomorrow to start. I hope she couldn't hear us. From the two of us talking about my dialysis rotations and working at the hospital, dialysis really scared her.

The next morning, the doctors informed us that the medications were still controlling her blood pressure, that they couldn't reduce any, and that eventually they were going to fail. They had maxed out on dosages, that her blood pressure would continue to drop, that she wouldn't make it more than 24 hours.

I immediately regretted everything. The fifth round of chemo that caused her pneumonia the first time, our decision to do the bone marrow transplant. She was in remission but her platelets were a little low, and she could have gone home with us and gotten stronger and we may have had her for several more years to enjoy things, so she could go on vacations and to birthday parties and to Christmases and Thanksgivings. Even the chromosomal defect caused by the leukemia was gone. Why did we do this? Looking back on it now, I'm not so sure it was the right thing. With such a scary procedure where only about half the people make it out ok, I wonder now if it's worth the risk, rather than taking her home and letting her enjoy her life. I do know that I do not regret deciding to intubate her, to give her a fighting chance after the transplant. She had fought so hard, had been so brave, and she had done so well up until two days ago. She deserved a fighting chance to pull her out of this, to help support her body until her white blood cells came back. She deserved it, she was so wonderful. I would have done anything to save her. And she agreed, "Do anything." So we did. She absolutely deserved it. She was scared, and didn't want to die, and she just was so frightened of all of this, but it had to be done if she was going to pull out of this.

She only had one functioning lung, she was septic, and she was in multi-system organ failure, too weak to start dialysis, to weak to build her platelets or her blood cells. Me and my dad kissed her all over and held her hands and stroked her head and petted her face, and it was understood between the two of us that we should not allow this to continue. If the medications were the only thing giving her a blood pressure, and the machine was the only thing keeping her breathing, we needed to let her go. So we brought my aunts in, and they agreed.

And she died within seconds that they removed her breathing tube and her medications. She had been long gone before we ever decided to do this. It was the right decision. Who knows how long she truly hadn't been there, lying there, falsely alive.

Even then, she looked beautiful. Just beautiful. I laid my head on her chest, and put her arm over my shoulder, and my other arm around her head, and I just laid there with her for a while. I didn't want her to be scared. I do believe in spirits and angels. And I am sure that the panic of realizing you are dead, realizing you are no longer with your family, is awfully frightening. I wanted to just hold her, so she could see that I loved her, even then. That she was safe and that she shouldn't be scared. I'm sure she was standing in the room with us, watching. With aunt Polly.

Before we intubated her the previous afternoon, she asked, "Where's Paula?" I looked at my dad, and his eyes said not to respond to that. I knew then that she was dying, that we were very close, even though the doctors had not told us by then. All of the people I have watched die, they have all seen people that weren't there, sometimes talking to them and sometimes reaching out to them. My grandma saw my uncle, aunt Polly's husband who had passed away years ago. My aunt Polly also saw him, and reached out to him. When my mom asked for aunt Polly, I knew that she was slipping away, to that point where your family members who have passed are waiting for you. I knew that I would not have her for much longer. I do very strongly believe that at that point or shortly after, aunt Polly was with her, to take her away, hours before she actually died. I think she had passed on long before we ever made the decision.

I picture her, very scared and very frightened, realizing that she is no longer with my dad and I, with her sisters. That she is panicking and crying and yelling, "NO!" But then she saw aunt Polly, and she knew that she had died. And aunt Polly reached her hand out, with her other hand on her hip, and said, "Gail, come on." And my mom shook her head and said, "No. I need to be with my family." And if you have ever met my aunt Polly, you will be able to picture her, the way she talked and did things. And she tells her she needs to come on, there's nothing more that she can do, and she has to come with her. My mom takes her hand, and although she is resistant and hesitant, she walks away with her, looking over her shoulder at us. I do really believe that something like that happened. Really.

And neither one of them had cancer. Or were in any pain. And they looked happy and healthy, together again.