Thursday, August 11, 2016

Hmm... Well... Okay Then...

This is the point in our story where the NASA mission fails and everyone realizes that there's no way to stop the asteroid from hitting the planet and we're all going to die; where, down by four but standing on their opponent's four yard line with seconds on the clock, the quarterback throws an ill-considered pass and in so doing transforms a win that seemed inevitable into the impossible; where the hero says, "I've got this," but winds up lying in a pool of his own blood.

In short, this is where I stop being treated systemically for cancer, and start being treated for the secondary symptoms.

Even shorter, this is where we give up.

To expand slightly, here's where things now stand...

All the tumors in my liver that I had, I still have, but now they're bigger. They also have some new friends. Similarly, the tumors in my peritoneal wall have also grown and multiplied. And, finally, it turns out the probe did find a new tumor in my colon, which is potentially contributing to my "slow" digestive tract, though the fact that I've got a pretty serious cancer problem throughout the area isn't helping things any.

From this, we can draw some immediate conclusions. First, the Lonsurf is done. I got my two to three months out of it, but it's clearly no longer working so there's no reason to keep taking it. Second, some of the more aggressive liver treatment options -- e.g., radio-frequency ablation -- are pretty much off the table as well. I was always an iffy candidate at best anyway, but now that the cancer is springing up in my abdomen, there's no reason to go too nuts on the liver. Or for that matter, anything else. In my case, we have to think systemically. 

And just as an aside, I had to laugh when, as we were talking about options for dealing with my now chronic constipation and abdominal pain, my oncologist brought up the option of applying low level radiation to my rectum to try to reduce the size of the new colon tumor, in case that was the cause of the problem. Oh yeah, that's how I want to go out, with massive inflammation of the ass as a result of radiating it. 

No. Just no. 

But that leads us back to an important point, which I've stated here repeatedly but is always worth repeating. As my doc put it today, he said, if you were a typical patient, there are things I could do. I could find a phase I trial or put you on some of the other third tier drugs, and maybe buy you a couple of weeks. But you'd pay for it. You'd be back on regular infusions, and back to dealing with the worst of the side effects. But, he said, you've made it pretty clear from the beginning that, for you, this was all about quality of life. And without making you miserable, there's not a lot left in the repertoire.

And in my designated role as the little black rain cloud, I should mention to all the folks who were referring me to a new study on an immunotherapy "miracle" drug that just opened up in Spokane, now that I've learned more, "miracle" seems like it might be a little strong. Yes, 20% of patients responded to the drug in the Phase I trial -- and a 20% response is definitely a big deal -- but that was based on a patient population of 25 (i.e., 5 out of 25 responded). That's not much of a sample. More important, though, the response of those five lasted, like, forty-five days. After a month and half, the tumors started growing again. Hard for me to see moving to Spokane and going through side effect hell (never mind the one in three chance I'd be put in the control group which takes a very nasty drug) for a potential pay off of six weeks. 

Anyway, to try to return to my larger point -- I'm sure I left it somewhere -- as my doc rightly noted, when I started this ordeal I committed to a game plan that would prioritize the quality of my days over the total number I had left. And for the twenty-four months I've been going through all this, I have to say that strategy has worked pretty well for me. I got to see penguins in the wild, ride motorcycles through the jungles of Vietnam, introduce my niece to raw oysters, and my nephews to steak tartar. 

Seems silly to change my approach now.

So while I always reserve the right to change my mind, for now that's how I'm going to play it. My doc's going to have his team send me a couple of trial options to consider (one he likes is all about improving quality of life, and doesn't even have extension as a goal), and we'll see. But absent one of those jumping out at me, everything we do from here on out will be focused on controlling the secondary symptoms of the cancer.

So while it came a lot sooner than anyone expected, my appointment today ended with my first formal request for access to some killer drugs under RCW 70.245. 

But now comes the hard part. Realistically, we're now measuring my remaining time on this planet in weeks. What would you do with your last weeks on Earth?

Yeah, I don't know either. Difference is, I need to decide, quickly. 

1 comment:

  1. Kudos to you for not accepting treatment that would only make matters worse. Your honesty and candor helps others, even when the news is bleak.

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