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Jay Lake
Date: 2013-08-21 07:00
Subject: [cancer] Field notes from Cancerland, eternal cold edition
Security: Public
Tags:cancer, funny, health, new zealand, personal, process, radiantlisa, writing
This endless cold

I am on day thirteen of the eternal New Zealand death cold. As I said yesterday on Twitter and Facebook, "So tired of this cold. Of course, when it's gone, I'll still have terminal cancer. Ah, perspective..." The cold actually got worse yesterday, with new swelling in my throat from my lymph nodes. This combined with a poor night's sleep (despite using the Good Drugs™) has left me feeling worse this morning than I have in some days. Colds aren't supposed to get worse two weeks in.

Palliative care

Saw the palliative care doctor Monday. As I told them, "I have obstinately refused to enter my terminal decline." They laughed. Go Regorafenib? It's not a cure, but as discussed previously here I'm getting some surprising life extension out of this crap. Earlier this summer, the medical expectation was that I'd be hitting my terminal decline in late August or early September. ie, now(ish). Death to follow in a few months. Instead, this terrible drug has kept me alive a while longer, which in turn has kept me out of the clutches of both the palliative care team and the Stage I trails people. My percentile of survival is growing ridiculously high and thin.


I continue to reserve public discussion of the disability qualification process, as I am still in the midst of everything. I hate to be this way, as its contrary to my own ethics and practices with regard to my cancer experience, but as a practical matter I must treat these processes as confidential. That being said, things in general are going well, but the oddities and complexities of the process only continue to multiply. My basic observation that the system's primary purpose is overwhelmingly keyed to fraud prevention, with service delivery a very distant second, continues to be validated over and over, as is my contention that it's almost impossible for an ordinary person with ordinary resources to navigate this system. That being said, the various examiners, adjusters and administrators I've dealt with have been almost without exception helpful, humane and thoughtful. They're just working inside a system explicitly designed to function against its nominal stated goals.

Reading and writing

I've read one book in the past month. My reading faculties are all but burned out. This causes me great emotional distress, as you might imagine. I haven't written a word of fiction since June. In either case, I'm not sure I'll ever recover either faculty. At this point in my life, I'll be skipping from drug to drug until I die. Even if we get lucky again once the Regorafenib has failed (as it inevitably will), I've never yet had a chemo drug that didn't fry that part of my brain. This sucks, a lot.

Speaking of Regorafenib

Speaking of Regorafenib, I've resumed taking it this morning. This is my fourth cycle with the drug. I will be mid-cycle at Worldcon, which means mobility impairment and lot of fatigue. It's an expensive pain in the ass (about $9,700 per month drug cost, though my co-pay is only $50) which causes all sorts of disruption to my body and my mind, but it is keeping me alive. So here we are. These days I unthinkingly accept compromises to my health and functionality that ten years ago I would have found laughably unacceptable. The will to live is a powerful one. In the mean time, I return to being toxic, crippled, and all the rest of the basket of fun this drug carries with it.


I am so tired of all of this.

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User: joycemocha
Date: 2013-08-21 16:27 (UTC)
Subject: (no subject)

The one thing that does scare me with people who either have a terminal diagnosis or who suspect a terminal diagnosis but don't have funds/desire to get it is if they turn bitter and start snarling that they are the lucky ones--they feel sorry for those who remain. That's...usually a clear sign of imminent demise (as in within days or weeks) in those folks. The bitter folks usually seem to have a harder death as well.

I have seen the withdrawal from reading and writing amongst elderly folks who are dying from causes other than cancer. It's not a sign of imminent demise, but part of the withdrawal process that seems to be coming at the end (I'm thinking of my DH's aunt in particular--a former librarian who set up libraries around Oregon and in Occupied Japan, very vibrant intellectual into her 90s--but her last two years, she began to cut back on her reading and was no longer interested in reading).

It sucks. Hugs.
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User: martianmooncrab
Date: 2013-08-22 07:00 (UTC)
Subject: (no subject)
despite using the Good Drugs™)

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