Last week, after I wrote, I slept well. I have realized that if I sleep the nausea goes away, so I look forward to it. When I am awake, the nausea medicine helps, along with peppermint patties. They have become my new digestive aid. I have tried ginger which also works, but the peppermint cools and soothes my tongue and esophagus as it slides down, and feels so good.
Saturday was supposed to be a busy day, but as with my weekdays, I have learned that I need to pace myself. Hanging out at a kids party in the late morning/early afternoon does not mean an afternoon gathering of friends is going to happen.
I was so tired after a birthday party where I only stood around eating and talking , that by the time I arrived home to pick Steve up for our get together with friends, I could only manage a hello before heading straight for bed. I could barely keep my eyes open. Steve went on without me.
After a four hour nap, I was able to walk over to the middle school in our neighborhood. I went along with my friends Valerie and Luke to see a musical the drama club was performing. Alice, A New Musical, was an original piece of work written by the drama teacher at Nathan Bishop Middle School, and put to music by a Brown University student. It was so good, this was my second viewing of it. I had seen the premier of it Friday night with my daughter Ayla.
I walked back home after the play, wondering if I would be able to sleep after my long nap. I needn't have worried. I was tired enough to sleep through most of the night.
Sunday was the walk a thon day. I woke up just before eight, which was when registration began. I figured if Steve and I made it there by nine, that would be fine. I wasn't really planning on walking too much, I just wanted to show my support for Dr. Safran and his research.
My friend Soli texted me as we were leaving for the bus, and asked if she could meet us there and walk with us. She met us on Thayer Street, which is in the heart of the Brown University Campus. From there we set off to find the walk a thon. Since I had left the registration form with the location listed on it at home, we walked around the campus for a little while before we found it, in the quad in front of the university gymnasium. It was supposed to be a 5k, but I figured what they really needed was the registration fee, so we paid, walked around a few times, and stopped to say hello to Dr. Safran. That was more than enough for me and I still wanted to make it to church to the Coming of Age service at ten thirty. We walked Soli back to her car and talked at little before we had to leave. It had been so nice of her to come and walk with us. I never did find my friend from Fain 3 there.
The Coming of Age service is one of my favorite services of the year at First Unitarian. This is the time when the young people who are in our eighth grade Coming of Age class get up before the congregation and make a statement about what they believe at this point in their lives. It is always a powerful service, which rarely fails to make me cry.
The service was excellent, but ran a little long. As I stepped out of the church my phone rang. My visiting nurse was already at my house to unhook me! Did I mention I was still hooked up to my chemo? Since Steven and I had bussed there, I asked the first person I saw who lived near me if they could give me a ride home. Janet said yes, but sent Steven off to let her husband know where she was going, while we hurried off. I was back at my house in no time, and the nurse was waiting there for me.
Usually I get a call ahead of time letting me know which nurse is coming and what time they will be there. Lately there are several different nurses who are work on Sunday, so it looks like I need to just count on them being there forty six hours after I am hooked up.
Once I am unhooked I am so hungry, I need to eat right away. I wanted to wait for Steve, who was taking the bus home, so buy the time he arrived I was both hungry and tired. First comes the hunger, then the incredible tiredness. At least this much is predictable.
Steven took advantage of my nap time to do the laundry, and I slept so soundly I missed a visit from my son Alex. Sigh.
After another four hour nap, I got up for dinner, and Steve and I finished watching the documentary Jinxed, about Robert Durst. Sitting and staring straight ahead seem to be what I excel at on my chemo weekends. That and sleeping.
Recently when I was sadly looking around my house at all of the things that have gone undone, I started counting the hours I have left in a day after all the sleeping I need to do. Some nights I sleep up to ten hours, and on chemo weekends, I take a two to four hour nap. During the week I work between nine hours (if I sleep late, no shower, no cleaning before hand,) and ten or more if I get up early enough to clean. It made me feel less badly about the way things are. It is also not the case for everyday, only about ten days out of the month, but that is a lot of lost time. I hope in the end, all of the sleep is really healing and not just lost time.