Every time I write a post where I share really good news, like my last post, some seem to get the wrong impression. Some see a PSA number as low as mine and think it means I’m all better. I’m not. They think it means I can do all of the things I used to do. It doesn’t. It means just the opposite. So I felt that I needed to share the other side of the coin. The cost for that great number.
The “impossibly” low PSA number I talked about in my last post was actually old news. I first told that number in a post from March 10th titled More Good News. But I can’t expect everyone to read every post, or remember every detail. So many reacted like this was breaking news. But my intention in writing Flight Of The Bumblebee was to try to explain why my number is so low; .06 when I’m Stage 4, have a very aggressive cancer, and still have my prostate. If you’ve read the post, you know what my conclusion was.
But I know that my oncologist would not agree with my conclusion that it must be the cannabis oil suppositories, in combination with Lupron and Xtandi that’s giving me this number. He’d say it’s hormone treatment alone. So, for the sake of this post, let’s say he’s right. Let’s stipulate that cannabis oil is doing no more than helping me sleep. Which would be reason enough to do it right there. Ten hours of sleep per night can only be helping. But if my doctor is right that it’s the combination of Lupron and Xtandi that’s driving my PSA so low, it’s important that you understand what that means. Important to me, at least.
If hormone treatment itself is responsible for my good numbers right now, it means a few things. First, it means that, no matter how good my results are, I keep getting weaker. I’m not all better. Just because my numbers are good right now doesn’t mean I can go back to doing the things I did before. In fact, the very treatments that are keeping my PSA so low are the ones that are making me so weak. And I keep getting weaker every day, despite my best efforts.
I especially get the reaction that I should be able to keep going because of my good numbers from my friends who want me to perform. They seem to think that, because I’m doing well today, and feel good most of the time, it means that I can keep doing all of the things I used to do. I understand how you feel, but you need to understand that the good numbers now come at a significant cost. It’s a cost I describe in my post The Price Of Energy.
Being on hormone treatment is not like taking antibiotics to get over your bronchitis. There aren’t a limited amount of pills for me to take, and once I’ve taken them, I’ll be good as new. It doesn’t work that way. Which leads me to my second point.
If hormone treatment alone is responsible for my good numbers, it means I have to stay on it for the rest of my life. Or at least until my wife, my team and I decide it’s time to move on to palliative care. If I ever go off hormone treatment, my cancer will come roaring back in very short order. Again, assuming my oncologist is correct about what’s working. That means that, for whatever amount of time it remains effective, I have to stay on it. For all of that time, however long that is, I’ll keep getting weaker, and my endurance will keep shrinking.
And third, if it’s Lupron and Xtandi that are doing this, it means it’s a temporary solution. Not only am I not “all better,” I never will be. I’ll enjoy the low PSA number for as long as I can, but inevitably, that number will begin to rise again. And when it does, Houston, we have a problem.
And all the while, even while my numbers are great, my strength and endurance will keep getting worse.
I saw some friends recently who had mistaken impressions about all of this. They thought my low numbers meant I could keep doing what I’ve been doing. They thought my desire to stop running the show was based on thinking I wouldn’t be around that much longer. But that’s not what it means at all. What it means is that I no longer have the strength or endurance to do that much anymore. And it’s not going to get any better. It will only get worse.
When I was first diagnosed in August of 2015, and had my first Lupron shot, I was still able to perform (and prepare for a performance, which is the real energy drain) at the same level I did before. The effects of Lupron were pronounced, but my strength and endurance were pretty much unchanged. So the musical event I participated in that fall was no problem for me. This past year, however, I was much weaker, and had much more trouble preparing for this past fall’s same annual event. I realized that the big plans I had for 2017 would not come to pass if it was up to me to make it happen. I just don’t have the energy.
That was what I meant by calling my last big public performance my “swan song.” I didn’t mean that I’ll never get on stage again. I meant that I’m done putting bands together and being the boss. I’m done running the show.
Many of us are aware of what’s known as “The Spoon Theory.” It was conceived by Christine Miserandino at www.butyoudontlooksick.com. My friend Dan Cole condenses the theory very well in his blog post, The Spoon Theory, Fat Gills and the Food Police. But let me see if I can condense it even further for any who may not be familiar with it.
The idea is that, if you have a chronic illness, you get a certain number of “spoons” per day. Spoons representing the amount of energy you have to give. I think the analogy would work better with money, but Ms. Miserando came up with the idea in a restaurant, so it’s spoons. Each task throughout the day costs one spoon. Once you run out of spoons, you have to stop. If you keep going, you need to borrow spoons from the next day, which compromises that day. Some days, you get up, and there are only a couple of spoons in the drawer. Other days, the drawer is full. It’s as good an explanation of what it’s like to be on hormone treatment as I’ve heard.
The cruel variation on the spoon theory for those of us who are on hormone treatment permanently is that each day, there are fewer spoons in the drawer. One day, there will be no spoons at all. Then, I won’t be able to do much.
Of course, if you read my last post, you know that I’m hopeful that it isn’t just hormone treatment that’s giving me these great results. If that’s true, maybe I will be able to go off Lupron and Xtandi at some point, and I eventually will be “all better.” But not today. Not this year, or next. As long as I keep taking my horse pills and getting my shots, my ability and desire to do the things I used to do will continue to wane for the foreseeable future.
But the good news is, I still have the ability and the desire to do some things I love to do now. I will continue to work with the kids for as long as I possibly can. That gets me onstage a little, and it’s a great way for me to keep my voice in shape and keep doing music on some level. But that’s not why I’m doing it. I’m doing it because I love my friends and I love those kids. I don’t regret my decision to stop being a bandleader myself, but it will be a very sad day for me when I can’t mentor those kids anymore. I get more excited and motivated about that than anything else I’m doing right now, except for what I’m actually doing right now. Writing this blog.
I’m sorry if I gave you the impression that my cancer is cured. If my oncologist is correct, and hormone treatment is what’s keeping it in check, my cancer will never be cured. And every day I’m on hormone treatment, the less weight I can lift, the more careful I have to be, and the more rest I need. That’s why I have to stop running the show. That’s why I’ve lost all desire to be in charge.
While I’m as grateful as I can be for my good number, and for the fact that I’m not in pain, the very treatments that are doing this for me are the ones that are pushing me to the sidelines. Please try to understand that. I’m not all better. That’s the other side of the coin. #waroncancer