Tuesday, August 22, 2017

Ignoring My Heart

This was almost an eclipse post. I thought seriously about writing a blog post titled The Path Of Totality. I love that phrase. The idea was, the shadow of cancer is passing over me, and it will completely engulf me because I'm in The Path Of Totality. But even when it does, my corona will burn all the brighter. Or some poetic crap like that. It would have been very beautiful, but instead, you get this.

Since I was diagnosed two years ago, I have done two things without fail; Follow my doctor's recommendations and follow my heart. Until now, there has been no conflict between the two. But now there is. For the first time, I'm neither following my doctor's recommendation nor following my heart. And I don't like it one bit.

I've always been big on following my heart. I wrote a whole post about it a while back. But it's harder to do that now than it used to be, now that we're down to the last treatment.

Long-time readers know well how I complained about Lupron, especially for the six months after my first shot. Much of that was truly hellish, for me and those closest to me. But my second shot wasn't so traumatic because of one very talented nurse, and my body got used to Lupron. And though I've dreaded it in many ways, I've never felt my heart tell me not to get another Lupron shot.

When Lupron stopped controlling my cancer, we added Xtandi, another hormone treatment. I often described those pills here as "horse pills." They were big, and for some, I'm sure they are hard to swallow. But I had no problem taking Xtandi. I swallowed them easily, and it never caused me any side effects. I could take it with or without food. It was very low maintenance. My heart never raised any objection about that treatment, either. But it stopped working too.

So now I'm on Zytiga, another hormone treatment. The last one. I have to take this drug on an empty stomach. I also have to take Prednisone along with it, only that has to be taken with food, twice a day. So there's this whole schedule that goes with Zytiga. I don't eat on a normal schedule, which makes it hard to remember to take the Prednisone.

I hate Zytiga. I hate taking it. I hate the way it tastes, and the aftertaste it leaves. I hate the way it makes me feel, though my side effects are mild. I hate the very idea of it. I hate the fact that I have to take it on an empty stomach, then feel nauseous for an hour afterward until I can eat something. And I swear, it makes me feel stupid. During that first hour after taking those pills on an empty stomach, it's like my synapses stop firing like they're supposed to. I've instructed my wife to watch me closely and make sure I seem to have all of my mental faculties at all times. Of course, many would say I've never had my mental faculties, but that's not relevant to our discussion.

There's also the fact that I'm not allowed to touch the pills. I'm supposed to swallow them, but I can't touch them. Moms, imagine telling your kids, "Don't touch that, but it's okay to put it in your mouth." That's what I'm taking every morning. I have to take the pills by shaking them into the bottle cap, then tossing them into my mouth from there. Maybe it's something to do with the oils in our skin making the pills less effective. But it creeps me out. And let's not forget the warning to pregnant women not to touch the pills without gloves. A friend asked me why that is, and I said it's because it's poison. Maybe it's because it's hormone treatment, and it could harm a baby's development by messing up a pregnant woman's hormones. Or maybe it's just poison.

I never once felt this way about Xtandi. I would happily have stayed on that for years. But Zytiga makes my skin crawl for reasons I can't explain. If you read my post Throwing Stuff At The Wall, you know that I felt a strong resistance to starting it. Now, after having been on it for a week and a half or so, I don't feel any better about it.

So why do I keep taking it? For the possibility of a few more months without symptoms. But that's all it is, a possibility. No one can guarantee anything. Both oncologists I consulted about it are pessimistic about how much it will help, following right on the heels of Xtandi. But it's all they can offer me except chemo and additional Lupron shots.

I'll get one more shot, but no chemo. My heart is clear on that. My thought going into this was I'd take Zytiga for as long as it drove my PSA down. I get my next labs done in mid-September. If my PSA is going back down after that test, we'll know it's effective, and I'll feel obligated to keep taking it, even though it makes my heart sick to do it.

But I do feel obligated. Obligated to my loved ones, and to many who read this blog who would feel like I was "giving up" - a term I despise - if I decided to follow my heart in this matter.

I've never gone wrong following my heart, but I've met disaster many times by ignoring it. I honestly don't know if I can keep taking Zytiga if I keep feeling this way about it. It feels like my heart or my body are trying to tell me something. It's not a God thing. It's just an aversion I can't explain.

I've felt this way since before I took my first Zytiga pill, and I still feel the same way. Following my doctor's advice is no longer an option, since he wants me to do chemo. Can I ignore both my doctor and my heart? I don't think I can.

Of course, if you read this blog with any regularity, you know that I don't believe medication is what's keeping me upright and symptom free. It's clear to me that God is doing that, not treatment. He's giving me this time, and I'm trying to use it the best way I know how. If he has a job for me to do, (or two or three) I believe he'll enable me to do those things. He determines the length of my days. And no matter what anyone does, those days will be numbered in months, not years. Because I am in the path of totality. As long as I'm on this path, I have to listen to my heart.

When Heather calls from the pharmacy to ask if she should send the next bottle, I honestly don't know what I'll tell her. There was never any hesitation when she asked about sending Xtandi. Now every time she calls it will be an existential crisis.

From my post Following My Heart, written April 6th, 2016:

Have you ever been there? Everyone thinks you should go in one direction, but you strongly feel you should go the less safe route, for reasons you can't explain? If you've ever followed your heart when many others were shaking their head, you know what I mean. But that's how I've lived my life, and I can't stop now.

This approach will also apply to my cancer treatment. I'll listen to all of the smart people, and do my research, but in the end, I must follow my heart. Even if it means going home earlier than you might want. Nobody likes it when their friends leave the party, but we all have to go home sometime.

That pretty much sums it up. If I decide I want to stop taking Zytiga, I'll talk to my doctor and nurse first. I won't just stop. I'll also keep you informed about everything, like I always do. And I promise, next time I'll have something more inspiring. Some poetic crap. Right now, all I know is that when I think about taking either one of the pills I'm taking, I want to shudder. And when I think about stopping, I'm filled with relief. The question is, am I prepared to keep feeling this way for the possibility of a few more months? Do I even believe it will give me that? Is it time to do what I've wanted to do from the beginning of this, which is just trust God? I know that would make my heart happy. But it would make a lot of people sad. And mad.

I'm sure I'll get lots of opinions about this. Nothing is set in stone, but my intention is to continue taking Zytiga, despite my reservations, at least until my next PSA test. My doctor warns that it might take a couple of months to see an effect, but I'm not inclined to give this stuff a two month trial. It gets one month to prove to me that it's worth taking. Unless my heart just won't leave me alone until I stop, which it has been known to do. If that happens, I have to stop ignoring my heart. #waroncancer #bearingwitness


  1. Follow your heart our colours your doc our colours your gut...Mark, it is your decision. We love and support you no matter what. God's got this. God's got YOU in His mighty mighty arms.