Perspective, such as it is

I’m going to the Bishop's Ranch tomorrow, staying until Sunday. I could probably extend that a bit if I want to, but have to fly back to Riverside on 7/21 to be admitted again 7/22.

The Ranch is the most healing place on the planet for me—not just the trees and the trails, but the people. It has been since I worked there, three summers ago. I feel the effects even before I go there. And I’ve been thinking about where I’ve been, and what chemo does to mind and body and being.

If I am to physically live, this has to work. It has a 30% chance of having any effect, from arresting to reversing the disease. If it works, most people get about six cycles, one week on and three weeks off. That’s six months of feeling unprintable, almost recovering, and feeling awful again. Plus probably about another six months I’ll need to recover from the onslaught of doing this to myself.

If biochemotherapy does not work, we go to high-dose interleukin-2. That can eradicate the disease completely—but will do so in 6-8% of people. It’s even harsher to be on, than the treatment I’m starting with.

If those don’t work, we go to clinical trials. The goal would be to further research for the benefit of people coming after me.

In either of the first two cases, I’ll have PET scans after every two admissions, to monitor if and how well the treatment is working. They won’t leave me to be sick in a vacuum. There will always be a point to it, or at least a goal that we can hope for.

Of course I want to live. But I scared a lot of people when I said from the hospital that I was just freaking done with this. That being sick without relief until you die is no way to live. That I just didn’t see any clear way to keep at it.

Fortunately, it’s like what I hear of childbirth. I don’t remember exactly how awful I felt. I remember not being able to stop crying, when the side effects of interferon (one of five drugs/chemicals I’m given) felt exactly as they had two years ago, and it hadn’t helped then. I am absolutely sure that I’ll feel that way again, and I can tell you what day it will start. I don’t know if I’ll handle it any more competently than I already did.

But I do know that I want to live. I know what the cost of choosing to live begins with, and can end with. And I know I can take this, one hospital admission at a time.

I’ve been home for five days, and am only slightly nauseous now. My arms and legs itch, the skin on my face is peeling, and my hair feels like it’s starting to go brittle. And I know I have the coming week to hike to my holy places, to try to catch the silent Benedictines in a giggle, and to spend time with people I really love.

It’s a choice I’ll have to make every day, in the moment, with and without chemicals flowing through a central line into my jugular vein. Right now, I know that tomorrow is worth it. And if I can have the same kind of Tuesday six months or a year from now, that will be worth it as well.

Putting it this way: I missed the Epiphany bonfire this past year. (I was probably helping host homeless people at my church, which is the other thing I’d rather be doing.) I want to go next year. The only way I can make it, is if I give these chemicals a chance.

My birthday is closer; it’s only in September. But the chances are high that I’ll be in the hospital, so I can’t make myself look forward to it. Distant things, past the likelihood I’ll be in treatment, I can look to.

I can do this while I’m mostly free of sickness. I’ll have to talk myself up to it again, week after next. The only way I can do this is, one admission at a time.