On-going problems with nutrition, but nurses are taking more care too. Had ice-cream frappe at lunchtime.
Problems with dilaudid: vision blurriness of vision and mild pain with loud noises (not actually problems, but inconvenient), auditory hallucination. Rate is 0.7 mg/hr with clicker that I can use to deliver 05 shots every 7 minutes. But relying more on clicking to deliver extra shots reduces the time that I can do l-brain things, and r-brain things that require concentration. I write in the green record book first which makes it easier to capture events and thoughts promptly.
Read some survivor stories at www.burkitts.org1. What stuck me was the length of time needed for the treatment. Were more than six months. Also, the wide variety of ways in which the lymphoma exhibits itself in the early stages. Maureen entered the data from my hemo report in the spreadsheet. Of the 22 different tests, 20 have numeric values. I have it set up so that I can see them over time, each on their own tab, with the thresholds for the test (min, max). The purpose is so that I can whether I traveling in the right direction. So far, I’m not, but as I said earlier, I also need to control my own expectation. If all goes as normal, I should reach my nadir by Thurs/Fri this week, and my counts should start moving up.
Got Colm to list for me all the oral meds that I’m supposed to be taking. Not so much that I’m then able to check up on the nurses, but because I want to be able to time my naps around them as much as possible. I have enough problems without also having to deal with someone waking you up to take a med! During the day. if I see that I haven’t received a med that I’m supposed to get, then they may be running late. It’s had to tell what’s going in the ward because I have a private room where the door has to be kept closed all the time. If they haven’t delivered the med after a reasonable period of time then perhaps the nurse needs reminding.
Had a great game of Uno yesterday when Mo and Miranda came in. With three people you really have to concentrate to see which direction the game is going. I’m sure we got it wrong several times. It was the best of four. Mo, Miranda, I each won one hand, followed by a protracted round when we went through the entire deck twice. Eventually, Miranda won. Short visits are good, because even if I’m feeling bad, I can keep I together for a while. Yesterday I felt great, and the memory of it has great sentimental value.
Mo came by herself today since I could barely talk and was feeling really shitty. We put Miranda on speaker phone and she practiced her three songs: ‘Reggae Vibrations”, “10th Planet”, and “I Want to Hold Your Hand.” She’s really coming on with accuracy and keeping in time. Still needs to work on tone production.
Mo also brought some more CDs. Vision is getting a little blurry so will sign off to take a nap. (They’ll probably pick this time to do a chest x-ray.) Don’t know if they’ll do it in the room or wheel me down there.
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