I saw my doctor today. He didn't have good news for me, but we're past the days of good news from the doctor. My symptoms are getting worse, and they won't be getting better. Ever.
But before I get too much into the subject of how much dying sucks, I should tell you how my weekend went. It was amazing. Saturday, I took an extra amount of the steroid we call Dex, and it got me through rehearsal that day and the party that night. Rehearsal was a blast, like always. My favorite part was singing some sick three-part harmony with my Dynamic Duo. I had no energy or balance issues.
The party was very meaningful. It was the last time we'll host that annual party. This group is like a family, and our house has been home to two annual events for this group for many years. The feeling of family in the group has been largely created here. I said a few words to our friends about how much the Colorado Art Rock Society has meant to Sharon and me for the past twelve years, and instructed anyone there who thought they might not see me for a few months not to leave without talking to me. I have to say my goodbyes.
One by one, friends came to talk to me. One was deep in denial, and it was painful getting her to face reality. At one point, she expressed disbelief that I was smiling while she was crying. I simply said, "I'm smiling because I'm loved." One wanted me to explain my experience with God in detail. That was a cool conversation. There were a few friendly, "If this is goodbye, it's been great knowing you" type conversations, but I knew I'd see most of the people there again soon, at one of our regular meetings. If my body will let me, that is.
I slept about four hours that night, then got ready for a Wik band meeting at our house at 9:00 AM Sunday. That's the band I'm in with teenagers. Seriously. We were all tired, but the meeting went well. A lot was decided, and as a result, we now have a gig on January 13th. All good. The whole weekend was good. Then this week hit.
Starting Monday, my nausea has been almost constant. I'd been able to control it with medical marijuana, but this week, I had to use the prescription Ondansetron. It doesn't help a lot more than the pipe I keep by my bedside, but it doesn't impair me. On the other hand, it causes constipation, so I can't rely on that every day. It's a juggling act, just like trying to find a dose level for the steroid to give me the energy I need and still allow me to sleep.
As happened with coffee, I wonder if something is aggravating my nausea the way coffee does. I think it could be the number of holiday sweets I've been consuming. I've been denying myself no treats this season. Why would I? No reason, unless eating those things made me miserable. So I have to try it. If I have to go through Christmas with no coffee or chocolate, this Christmas will be a lot less fun.
My energy level continues to drop. I hope the new regimen I'm trying of a quarter steroid pill four times per week will keep me active for a while, but it's a constant experiment where I'm the guinea pig. As my body continues to break down, I'll need more stimulant to keep going, which will compromise my ability to sleep.
I know I should go easier on myself. But I can't. The things I'm doing are too important to me. I don't care what it costs me in terms of recovery time. This past weekend took about three days to recover from. But I still didn't feel fully rested today, four days later, and I still felt sick. Sick and tired.
At the doctor's office today, I was thrilled to see my team again. I took the stairs, but slowly, holding onto the hand rail. For the first time, when they asked how I was feeling, I told them not great. When I checked in on Facebook, I listed my status as "feeling sick" for the first time ever. When I saw the doctor, I told him about my symptoms. The nausea, fatigue and balance issues. He said he never expected that nausea would be a symptom, much less my first and most prominent one. He wasn't surprised by the fatigue and balance problems, however.
He told me I should expect my symptoms to get worse, not better. My doctor is nothing if not an optimist. Every prediction he's given me so far has missed on the generous side. So for him to say that is significant. That's why I like him. He tells me the truth.
I told him I realize I'm pushing myself hard. I know it's only going to get more difficult from here. But I also told him about the show dates I have coming up on January 13th and 28th, and how I intend to perform at both of them. Not much, just a little. He's all for that. Goal dates are important for hospice patients.
I don't know if we're going to find a good solution to my nausea and fatigue, or if I just have to power through. Either way, I won't stop until I have to. I can't. The day I have to stop doing those things is the day I start dying in earnest.
This is the first week since I began hospice care that I've felt bad all week. I hope we can get a handle on this and I can start feeling better, but we may not, and I may not. For now, and maybe from now on, I'm sick and tired. #waroncancer #bearingwitness