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[cancer] Treading softly on the paths of the dead - Lakeshore
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Jay Lake
Date: 2013-02-11 05:15
Subject: [cancer] Treading softly on the paths of the dead
Security: Public
Tags:cancer, friends, health, personal, radiantlisa, seattle
"The way is shut. It was made by those who are Dead, and the Dead keep it, until the time comes. The way is shut."

    —  J.R.R. Tolkien, The Return of the King

Yesterday, before leaving Seattle for Portland, Lisa Costello and I visited with a friend whose cancer is more advanced than mine. They are already in that state which I am approaching of having outrun all the available treatments in the normal clinical path, and are currently depending on drug trials to keep them alive. As it happens, this friend's family has emotional difficulty in engaging with their treatment and prognosis, so they don't get to talk about the disease and its discontents in frank and clear terms very often.

We are both dead men walking, this friend and I. Formally classified as incurable. Looking to treatments that might keep us alive another few months or a year or two. Hoping the metastases don't recur quite so quickly next time. Dreaming of a cure which, while still theoretically possible, is unlikely to the point of vanishingly so.

When two people in this situation know each other well enough to speak freely, the conversation quickly grows brutal. The three of us had met in a coffee shop in a Seattle suburb, and the lady at the next table kept glancing up at us with a horrified expression on her face. I'm honestly not sure how Lisa kept her composure as well as she did.

But there are home truths that occupy your mind and soul when you walk the paths of the dead. And this is a very expensive game of diminishing returns. Cancer is smart, and adaptable. A new drug which works for six months or year then loses its effectiveness. And treatments are horrifically expensive. In my case, we are closing in on a lifetime cost of a million dollars, at adjusted insurance contract rates. January alone was a $100,000 month for me, thanks to surgery and hospitalization. My friend commented that their current drug trial, which is fairly successful for them, requires out of state travel every two to four weeks to the research center, and when the trial ends, they will probably have no access to that drug at any price, as its not yet FDA-approved. That moves things from the category of "expensive" to "impossible".

So, like Odysseus seeking Ithaca, late stage cancer patients voyage from island to island, risking being turned into pigs or drawn into the sirens' fatal embrace for the sake of one of more hit, one more high, one more extension on our tenuous and already cancelled lease on life. We are junkies desperate to stay in the light just a little longer before we descend so deeply into the paths of the dead that no pharmaceutical Orpheus will ever be able to sing us back to the lands of the living.

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cathshaffer
User: cathshaffer
Date: 2013-02-11 15:18 (UTC)
Subject: (no subject)
In the area of cancer, most drug trial participants are allowed to continue treatment after the end of the trial as long as they are benefitting.
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Jay Lake
User: jaylake
Date: 2013-02-12 03:20 (UTC)
Subject: (no subject)
In this, I only know what my friend told me they think...
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fledgist
User: fledgist
Date: 2013-02-11 15:21 (UTC)
Subject: (no subject)
It is a strange place indeed.

It must make every harrowing of hell story, including the one to which you allude, acquire a more than bitter edge.
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MG Ellington
User: xjenavivex
Date: 2013-02-11 16:36 (UTC)
Subject: (no subject)
This gave me so much to think about. I have a friend recovering from breast cancer. I am trying to figure out how to be here for her in this leg of the journey. I can deal with frank discussion but it is hard to know what is too private. I am sorry things are so much more dire for you, Jay. I am glad that the limited chemo will at least let you get out and about more and live more fully for now. Fuck Cancer.
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sillylilly_bird
User: sillylilly_bird
Date: 2013-02-11 19:49 (UTC)
Subject: (no subject)
My mom had surgery on Friday - so much for remission. A plasma cytoma in the discs and bones of C4-C6 - it's a common recurrence of the myeloma. It does usually respond well to radiation, but they need to do a PET to see if she has any other bone lesions. They got about 80% of it and the pain that it had been causing by pressing on the spinal cord is gone, so that's good. Here we go again.
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Jay Lake: cancer-hereafter_is_closed
User: jaylake
Date: 2013-02-11 20:11 (UTC)
Subject: (no subject)
Keyword:cancer-hereafter_is_closed
Sigh. Good luck and good health to her.
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Reynardo the Red
User: reynardo
Date: 2013-02-12 00:25 (UTC)
Subject: (no subject)
That last paragraph ... may I metaquote it? It's resonating strongly with me, and feels like it should be the voiceover for the end of your movie.
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Jay Lake
User: jaylake
Date: 2013-02-12 03:19 (UTC)
Subject: (no subject)
Metaquote and repost to your heart's content. All good.
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Reynardo the Red
User: reynardo
Date: 2013-02-12 03:57 (UTC)
Subject: (no subject)
Thank you.
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Jay Lake: signs-never_give_up
User: jaylake
Date: 2013-02-12 04:24 (UTC)
Subject: (no subject)
Keyword:signs-never_give_up
You are welcome.
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Trisha Lynn
User: trishalynn
Date: 2013-02-13 11:48 (UTC)
Subject: (no subject)
Here from MQ, and I wish you well and good journeys, especially now that you can travel to see friends again.
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LiveJournal: pingback_bot
User: livejournal
Date: 2013-02-12 03:54 (UTC)
Subject: <lj user="jaylake"> is facing death.
Keyword:pingback_bot
User reynardo referenced to your post from jaylake is facing death. saying: [...] be able to sing us back to the lands of the living. Quoted with kind permission from his journal [...]
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