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[cancer] Field notes from Cancerland, emotional rollercoaster edition - Lakeshore
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Jay Lake
Date: 2013-11-05 07:12
Subject: [cancer] Field notes from Cancerland, emotional rollercoaster edition
Security: Public
Tags:cancer, death, family, health, personal, radiantlisa, travel
What I am doing in Maryland

Lisa Costello has posted an update about both her parents' health and her own health. It wasn't mine to tell, in any detail, but now that she's gone public, I'll add a bit. We're here mostly doing the legwork to close out her parents' life in Maryland. Lisa's mother's sister and her daughter are handling the healthcare and relocation end of things, as they are moving to live with the extended family in Missouri. My aforementioned GI problems are keeping me close to the hotel bathroom, but I've been talking with attorneys in two states, and as of today, will today begin interviewing and working with real estate agents in order to list their house. Plus there's a lot of property that needs to be disposed of on their behalf. It's a busy time, oddly punctuated by the rhythms of her parents' health and of my own health.

Further GI follies

Due to an attorney meeting yesterday, I had to double down on GI meds. As of this morning, the gurgling has started again. I'm pretty sure I am in for an explosive day. I discussed a day or two ago my fear of this state of affairs being the new normal. You work with what you have in this life, but I've been pretty miserable at both the micro and meta levels.

Disability issues

One of my disability providers is challenging my benefits based on the Social Security status of [info]the_child and her mother. This despite me being in clear compliance with the policy requirements, and having provided all the needed documentation. Put simply, they think I'm concealing information or flat out lying to them. My case has been turned over to the 'Financial Recovery' unit of my disability carrier. So once again we are back on the presumption-of-fraud merry-go-round that characterizes the disability benefits system in this country. I can't say more than that right now as this is an ongoing legal matter, but I will observe that the last fucking thing I need is something else to worry about. I am at significant financial risk from this, and could conceivably wind up having to pursue further legal action. Which will suck up untold amounts of time, money and mental/emotional bandwidth. Gee, thanks guys.

Scanxiety

The next CT scan is this Friday, three days from now. This is the first scan since I began taking Regorafenib where we might reasonably expect to see the medication beginning to fail and the return of my explosive tumor growth. The normal life cycle of the drug is six to twelve months, and this is the six month mark. My oncological hypochondria is already very stirred up by the recent increase in my side effects issues. So, yeah, screaming panic barely suppressed would be a fair description of my current emotional state.

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Debbie N.
User: wild_irises
Date: 2013-11-05 15:08 (UTC)
Subject: (no subject)
My oldest friendship is with a 35-year-tenure Social Security employee, and she knows the system backwards. (We've been friends longer than she's been working for Social Security.) Let me know by email if she can help. (She's in NY, if that matters.)
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Jay Lake
User: jaylake
Date: 2013-11-05 15:19 (UTC)
Subject: (no subject)
Thank you. The problem right now is at the other end, with my private carrier.
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Soon Lee: Saccharomyces
User: soon_lee
Date: 2013-11-05 19:14 (UTC)
Subject: (no subject)
Keyword:Saccharomyces
Re:Disability issues

Oh, for fuck's sake.

(Sending supportive thoughts)
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martianmooncrab
User: martianmooncrab
Date: 2013-11-05 20:05 (UTC)
Subject: (no subject)
a pox upon that provider... I think that they base their challenges on data generated by some matrix of benefits... and that if they press hard enough, they dont have to pay out, and they can get any and all monies back. Its just their business model. Plus they expect that they will win, because yanno, sick people make great targets.
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curious Eve
User: curiouseve
Date: 2013-11-06 02:31 (UTC)
Subject: (no subject)
Fuck cancer.
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Bob
User: yourbob
Date: 2013-11-06 05:52 (UTC)
Subject: (no subject)
Fuck cancer. Fuck strokes.

Good thoughts all around.
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