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I've never been the regular diarist I wanted to be. But, when I've had the opportunity to write here, I've always wanted it to be about science and science education. I've done a little. I should have done more. Maybe, someday, I will again.

But lately, I've been writing about a wonderful woman and her battle with terminal cancer. It's been a little while since my last such update. I'd been holding off writing something grim because even if the last chapter of her life's story was fated long ago, there was some legitimate hope that we weren't that near the end of the book.

But we are. This is her last chapter, and while we're not quite to the final page yet, it cannot be so very far away.

There are still some unanswered questions, but the fact of the matter is there always will be. If we had a flawless understanding of the mechanisms of cancer, we'd be able to fight it back in a lot more cases that medicine currently can. My fiancee had been on a markedly successful treatment regimen since the middle of last year. The detectable lesions in her liver had held steady for months, and had actually begun to shrink. In a little better world than this one, that should have been unqualified good news.

Even as the major lesions shriveled, the cancer persisted in her liver in a more diffuse form, and began to inflict increasingly severe functional damage on the liver's metabolic processes. The result was the symptoms we saw at the beginning of February. Abdominal pain, jaundice, fatigue, all caused by cholestasis -- an inability of bile to pass through the liver into the intestines. There are a lot of causes of cholestasis, including gallstones and drug reactions (and even, although we knew this wasn't the case here, a rare reaction to hormone changes in pregnancy). Her doctor stopped one of her drugs, because it was known to affect the liver as a not-too-rare side effect. I busted my ass in white-paper research and presented a series of journal papers with conclusive evidence that, in very rare cases, the other drug she was on could also cause cholestasis with a progression that looked almost point-for-point like hers. He agreed that, while monumentally unlikely, the similarities were too great to risk continuing the therapy (which wasn't stopping this new problem anyway), and so she cut that drug, too.

It's actually still possible that one or the other or both of those drugs may have contributed to this. But all the tests later, finally including a deeply unpleasant liver biopsy, and the conclusion is inescapable. Whether anything else went wrong doesn't matter; the cancer stopped playing around and started destroying her liver in earnest. Even if stopping those drugs would have helped, it won't matter; we're at least a month from any liver function rebound that discontinuation may cause, and, well...

Right now, we're a month down the road from where we started, and she can run down the list of symptoms of liver failure. Slowly, her skin grows more yellow. She's got a half-dozen feathery little red marks on her neck and shoulders, a form of blood vessel damage known as spider angiomas. Fluid slowly accumulates in her peritoneal cavity due to the back-pressure in the portal vein, a condition called ascites; her first round of paracentesis drained over two liters of fluid, and she'll probably be back for that again in a couple more weeks. Her neurological symptoms are still pretty mild; officially, she's only demonstrated minimal encephalopathy, but I can tell that she loses focus a little more than she used to, searches for the right word a little longer than she once did. When she sees the doctor next, she'll likely be considered Grade 1. And that -- hepatic encephalopathy -- is what she will die from.

It's impossible to tell how long she has. Liver failure doesn't happen on a precise schedule. While patients with chronic liver disease sometimes live for even years from this point, that's not going to be the case here, because the cancer is still at work. Her team won't quote numbers on the record. But the bottom line is three months, or maybe less. Probably not more. She's on one last set of drugs; she is one hell of a fighter, and she told her team she wanted to be on some sort of anti-cancer therapy for as long she could physically put a pill down her throat. But we're out of therapies with anything better than a lottery-ticket chance of working, and I know why they chose the one they did. It's the last remaining option with minimal side effects, the last drug that allows her to be on something without adding to her suffering.

Neither she nor I will ever, ever say that she "lost the fight" to cancer. Just like the clock strikes midnight at the end of each day, and every book has a final page, this is simply the way things are going to end. And there is an ending, eventually, for all of us. But, as I write this, we have spent 162 days together, and that has been the happiest time of both of our lives. Her last page may have been written years ago by this disease, but we have edited an amazing amount of joy and love into her story, and we're going to keep right on doing just that as long as she is able, until the clock sounds and the book closes.

Originally posted to Serpents Choice on Wed Mar 13, 2013 at 09:19 PM PDT.

Also republished by Monday Night Cancer Club, Positive Intention and Lovingkindness, and Personal Storytellers.

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