I arrived home yesterday afternoon. After my dose of Phenergan (to treat the nausea from the narcotic which suppresses the cough), I immediately fell asleep. These days I always think about the song "Go Ask Alice." Of course my drugs are not nearly as fun. For the most part, my drugs just make me very sleepy and disoriented. In fact I talk in my sleep constantly now and I also find myself typing on some imaginary computer. Then there is profound diaphoersis, whole body sweats, that happens 2-3 times a night. I have never sweat like this in my entire life. With each event, I look like I just ran a marathon.
Last night as I drifted off to sleep I hoped that being in my own bed might make a difference. Unfortunately, I was mistaken. The night was awful. By 2:30am, Bill needed a break and my mother and father took turn keeping vigil by my bed. I finally found sleep around 6 and slept through the morning routine. Upon awakening my symptoms reappeared; I was having great difficulty breathing. In fact, I felt like I was drowning.
At one point I asked my mother the time. I assumed she was going to say that it was well after noon. "It's 10:45," she answered. I was devastated: how was I possibly going to make through the day? Eventually the nurse got an order to increase my continuous dose of fentynal from 25 to 37.5 micrograms. After that I could finally breathe.
In addition to the breathing difficulties, the skin hardening, which had stopped years ago, has returned with a vengeance. The skin on my legs and torso are so taut that it is difficult to stand up straight. The worsening in my illness over the past weeks alone has been extraordinary.
My parents, Marie, and Bill kept vigil by my bedside much of the day, sometime all together and sometime one-by-one. My mother has lost so much weight from her constant worry. She has aged so much in the part 9 months. My dad stares off into space. I wonder where his mind goes: old memories, a comforting place, or simply nowhere. Despite their grief they both told me repeatedly today, "Let go, MIchelle. You have suffered enough." My mother told me how proud she was of me in so many ways. She had always mourned my leaving home at 17 never to return. She perceived that time and space as wedges in our relationship. "In the past nine months," she said, "I feel like we felt in love all over again." I feel the same way. I know how much she loves me. I told her how much I loved her homemade hot chocolate on cold days, the way she she celebrated every holiday, and the way her cupcakes always sold out first on cupcake day.
After I showered today, my mother helped dry me off and handed me my robe, "Can I have this when you are gone?" She asked. It's so like her, to ask for something simple rather than a piece of jewelry or the like. "That way I can wear it in the morning when I drink my tea. "Please come visit me," she cried. "I will mom. I will."
Bill and the home care nurse agreed I needed to go back to the inpatient facility so I am going tomorrow. I asked Bill point blank, "How much more time do you think I have?" "A couple days," He answered soberly. To be given that prognosis by my eternally optimistic husband is hard. I did finish everything I wanted to do ...
I will try my best to keep writing. I'm stoned alot of the time so don't expect much from me!