It's been a while since I've told you how I'm doing. After two weeks in Heaven, it's time to come back down to earth. Time may not pass in Heaven, but it's passing all too quickly here. I still have much to do, and despite minor difficulties, I'm striving to do it all. I want to finish well.
My symptoms are manageable. I still only have the original three; nausea, balance issues, and pronounced fatigue, or what I call "that run-down feeling." I'm still in no pain. My weight is good. I'm controlling the nausea with medication. It tends to be worst at night and first thing in the morning. Once I have it under control in the morning, I'm usually fine the rest of the day. If only my other two symptoms were as easy to treat.
Before I get off of the subject of nausea, let me answer a frequently asked question. Yes, I still can't have coffee. The thought of one sip makes me nauseous. It's brutal. It's like being pregnant. The thing I loved so much now makes me nauseous. But as I've said before, I know that one day I'll wish my worst problem was not being able to have coffee.
I deal with my balance problems by making sure I can hold onto a handrail when taking the stairs, (and I do still take the stairs) being careful to stand up slowly, and making sure I always have a place to sit down quickly if needed. There doesn't appear to be a prescription for that. So I just have to be careful. My balance is better when I have more energy, and I tend to have more of those "sit down quick" moments when I'm running low on energy. Which leads me to my main battle at this point.
Without artificial help, my energy level is not good at all. So I've been trying different dosing levels of the steroid Hospice prescribed, which we call Dex for short. I reported on my first try with that in The Marathon. I took a whole pill, and that was far too much for my system. I had great energy, but could not sleep. I also had one of my dizzy episodes after taking it, though I don't know if the two were related. I tried a half pill a few days later, and still could not sleep that night. Finally, I tried a quarter pill. It worked, but I can't do that every day. If I do, I can't sleep by the third or fourth night. So, on the advice of my hospice nurse, I'm taking a quarter pill every other day to see if that will give me the energy I need and still allow me to sleep. The jury is still out on that.
But my sleep has been much better lately for one reason. I got a new batch of cannabis oil from my caregiver. I had stopped taking the cannabis oil suppositories I've talked so much about (see Tiny Popsicles and Tiny Popsicles Part Two: The Experiment) because I thought the latest batch of oil I got was keeping me from sleeping instead of helping me sleep. My caregiver made me a new batch that's 50% CBD, and that's been helping me sleep much better.
When I was off the oil, I would typically have at least a sleepless hour, if not two or more each night. But since I started taking the oil again, I'm sleeping like a baby again. That will only help my energy level. I'm very much hoping that the combination of the oil and the low, every-other-day dosing level of Dex will do the trick, both energy-wise and sleep-wise. And I need all the energy and sleep I can get, because I'm not just waiting to die. I'm living.
Progress on my book, Bearing Witness, is a bit slow at the moment, but will pick up again soon. Once I've caught up to the present in the template for print, I'll begin formatting it for Kindle and iBooks.
I'm also busy at work planning my memorial service. I've held one rehearsal for it - which spun a few heads on Facebook - and I expect to meet someone else to run through another of the songs soon. There are two versions of the service order, depending on who is available to sing. The slideshow and a video retrospective of my song parody career are in the can. Soon, I'll write the program for the service, complete with introductions of every person who will participate; Who they are, and who they are to me.
But the main thing on my plate right now is the winter show for The Littleton Conservatory Of Rock on January 28th. I'm the vocal and performance coach there, in case you're new here. Rehearsals started for that three weeks ago. We rehearse on Saturdays from 10:00 AM to 5:00 PM. As you can imagine, with my energy issues, these rehearsals are very taxing. I tend to have at least one of those "have to sit down quick" moments in the afternoons there, just from fatigue. My balance is worse when I'm tired.
I've had a couple of those in front of the singers I coach. My friend Todd has seen them too, but I don't know if anyone else has. One of these days, I'm afraid something will happen that everyone will see. But none of that keeps me away. I love being there with them. It drives me. It gives me something to shoot for; being able to take the stage a few times at the end of January with these people who mean so much to me. So don't tell me to stop. I won't. If I stop doing what I love, I might as well lay down and die.
The next rehearsal is tomorrow. It's the start of another marathon weekend. First, an all-day rehearsal, then that night, Sharon and I host a Christmas party that we've hosted at our house for many years. The Colorado Art Rock Society holiday party. Others have volunteered to host, but it's my last one, so we're doing it here. That usually goes till about 10:30 PM. Way past my bedtime.
Then, I have to stay up to get the house ready for a band meeting at our house the next morning at 9:00 AM. It's the only time the band I'm involved in, Wik, could meet this week, and it's been a month since we played Prog Fest. I wasn't willing to let it go any longer. And there's no other group of people I'd agree to meet at that time after a day like Saturday. Especially since I will have seen most of them at Conservatory rehearsal the day before. But this band is important to me. So I'm going ahead with it, and looking forward to it very much.
In order to do this, I'll have to take more than my usual dose of the steroid Dex. Which means I'm basically committing to not sleeping Saturday night. If I get a few hours, great. But I'm not counting on it. It's OK, though. I'll be able to take the rest of Sunday and all of Monday to recover. I only hope I don't have another episode like the one I described in The Marathon from pushing myself too hard. I'd hate to call off the band meeting because I had to go to the Emergency Room.
I could tell Todd I can't make it to rehearsal tomorrow, and stay home and rest up for the party. But then I wouldn't get to see those kids. I could have told someone who volunteered to host the party that I needed them to do that. But then I'd miss out on an important Christmas tradition for us. I could have said no way to a band meeting on Sunday morning. But I didn't, and I won't. I miss meeting as a band with them. I know that one day soon, I won't be able to leave this house. So as long as I'm able, I'm gonna keep going places and doing stuff.
It's such a blessing to be able to finish well. One of the benefits of cancer is it gives you time to do that. The absence of pain is the miracle that allows me to do all of this. More than a year ago, I felt a distinct sense from God that he was giving me this time without pain to get some things done. To allow me to finish well. My heart is filled with gratitude for that.
The night before Thanksgiving, I wrote a Facebook post about what I'm thankful for. Here's one of the examples I gave:
I’m thankful to have a sense of purpose that drives me, even in hospice care. Because of this, I am living, not just waiting to die.
Yes, I am in hospice care. Yes, I am dying. But I won't let that keep me from living. I am driven by a sense of purpose. Because of this, I am living, not just waiting to die. Now please excuse me. I have some living to do. #waroncancer #bearingwitness