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Please begin with an informative title:

This has not been a good week.  I can't say I expected a good week.  Not quite 10 days ago, I posted my last update about my fiancee's battle with cancer-induced liver disease. Folks who have been reading these along with me know it was ... not good news.

But tonight, I've got ... well, I can't say it's good news.  But it was a good day.  And I'm reminded, as I always am, of what an amazingly determined woman she is.  Of the fire and passion that lights her eyes.  Of how I fell in love with a terminal cancer patient in the first place.


You must enter an Intro for your Diary Entry between 300 and 1150 characters long (that's approximately 50-175 words without any html or formatting markup).

She had been scheduled for paracentesis to drain fluid from her ascites this coming Monday. Things didn't go as planned.  Instead, last Monday, her oncologist had her admitted to the ER for tense ascites with severe abdominal pain.  The suspicion was that she had developed spontaneous bacterial peritonitis.  So she was put on a whole battery of antibiotics as a precautionary measure.

Of course, because catching a break hasn't been in her cards for awhile, now, a relatively easily treatable infection wasn't the problem.  After removing 5 liters of fluid from her peritoneal cavity, it became clear on imaging that a significant component of her pain was bilateral pleural effusions -- accumulations of fluid adjacent to both lungs.  I really don't know why this hadn't left her breathing visibly compromised, but that's okay, because neither do the experts.

Hydrothorax associated with end-stage liver disease is a Very Bad Thing.  Loss of liver function interferes with clotting, and there's not much to do with fluid in the pleural cavity without significant risk of bleeding making it worse.  Also, recurrence is very common.  They evaluated whether she could receive a transjugular intrahepatic portosystemic shunt -- an artificial connection between the portal vein and the hepatic vein, skipping the liver entirely.  That sort of shunt would relieve the portal hypertension causing the ascites and the effusion, but has significant risks of worsening hepatic encephalopathy.  However, for several reasons, it was decided that she simply couldn't qualify for the shunt, at least not for now. So they drained the pleural effusions the old fashioned way, despite the risks.  At one point along the way, her diastolic blood pressure dropped to around 50, and there were concerns that a bad outcome as a result of that was also possibly imminent.

There was no bad outcome.  She didn't bleed out on the table.  But just about the time they got her to recovery, she had a lung collapse.  Like I said, this hasn't been a good week.  But ... silver linings, and all that.  They were able to re-inflate the lung, without any tearing or bleeding.  There was no bleeding into the pleural cavity.  Her ascites are still awful -- two days after they removed the large volume of fluid, they took another 2.5 liters out, this time leaving the sheath in, and attaching a flow control valve.  But that's working, too, and the pain is back to manageable.

She's now been transferred out of the hospital and into a hospice center.  Her diastolic blood pressure is still very low, probably in part because she's still having a liter of fluid drained each day.  Her blood clotting is dodgy, and she's had her first "liver disease nosebleed", but it does still clot.  Hepatic encephalopathy comes and goes, although it's sometimes tough to tell what's the liver disease and what's just legitimate fatigue or the higher than previous morphine schedule, but numbers are a challenge for her right now, and so our backgammon set has to sit idle.  Regardless, her room at the hospice center is phenomenal, easily larger than an executive hotel suite, with a wonderful view, amazingly friendly staff, and food that's actually really good.  She's awake more than she was last week.  Her appetite is pretty good.  Her attitude is amazing.

You see, she refuses to discuss, or allow anyone else to discuss -- whether that's doctors, family, or friends -- her prognosis or any sort of amount of "time left".  She's going to live for exactly as long as she lives, and to hell with anyone who tries to put a number on it or tell her what that should be.  She'll never know by my voice, but I know that on Monday, they weren't very confident we'd be anywhere today.  Instead, she's eager to start some basic physical therapy so she can get back on her feet; she's tired of being a "fall risk".

End-stage liver disease is called that for a reason, and she can never receive a transplant.  The only even remotely possible scenario that would allow any sort of recovery from here would require her being the fourth person in the world, ever, to have had a specific, peculiar, idiosyncratic set of reactions to previous drugs.  And even then, that'd only be a thin chance for things getting a little better.  But while I am there, I swear that she will never see those things in my eyes.  As she started in on yet another piece of fruit tonight, she looked at her fingers, and squinted, and considered whether her skin might be just the slightest bit less yellow than before.  She wondered aloud when she might be well enough to get out of hospice, and if there will be one of her favorite cakes waiting when she does.

What could I do?  I told her that, well, it might be the light, but maybe they are just a little less yellow.  I held her close, and we shared a kiss.  Then I kissed her nose, because it always makes her smile.  She'd been up nearly the whole day, and was getting tired, so I told her to get a good night's rest, and to feel better, and I'd see her again tomorrow.  With honey for her tea.

I don't believe in the kind of miracles it would take for our story to have a happy ending, I'm afraid.  But it doesn't matter.  Because I am going to keep bringing her fruit, and her favorite tea.  I'm going to keep kissing her nose, and telling her (with no dishonestly at all) that she's still my beautiful girl.  I'm going to keep fighting with her, at her side, whether that's for days, or weeks, or something longer.

And if somehow, impossibly, she gets to come home?  I will have every cake in the world waiting for her.

Extended (Optional)

Originally posted to Serpents Choice on Fri Mar 22, 2013 at 09:44 PM PDT.

Also republished by Kossacks helping each other, Monday Night Cancer Club, and Personal Storytellers.

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