[Cancer]
[cancer] Field notes from Cancerland, emotional rollercoaster edition
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 the_child
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.
More from my site
Posted: 5:12 am Tue November 05 2013 |
Comments
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Wow. Would you like people to send bitchy letters to the disability insurer along with links to your blog since 2008? Stunning that they’d do that to you. I have a disabled sister and she’s had periodic fights over her SSI benefits.
I’m very sorry for Lisa, that’s very hard.
With your LTD insurer, this is not the time to stick to channels, this is the time to loudly name-and-shame. It’s time call in the folks who did the piece on you for the Oregonian, it’s time to blow up Twitter, it’s time to use your fame.
The lede: “Author Jay Lake, who has been blogging his cancer publicly for five years and who is now dying, has been falsely accused of wellness by X Insurer.”
It’s time to go the route of Poop Strong and blow up the internet with this.
The only things that will make this stop quickly will be making sure your story hits their google top page, or a CEO to CEO call from someone like Bezos saying “lay off that author guy or we’re switching to your biggest competitor.”
They do not give a shit about lawsuits (unless the lawsuit causes massive negative publicity). It’s just like the end of THX- they’ll run that lawsuit for years until they decide the cost-benefit tips to settling, and they have more money that you do.
I’m so sorry Jay. It’s just evil.
Sorry that both you and Lisa have to go through all this. I hope that you’ll get your problems with the disability insurance resolved.
Vulgarly, I suggest combining problems 2 and 3 to achieve, if not a solution, at least a somewhat satisfactory revenge.
Hi Jay,
Lurker here with an evil, nasty thought. Can you go to the disability insurer’s office in person? And time it to one of your worst bathroom moments, and do it at your case manager’s desk or in their lobby? And then insist on an ambulance.
Yeah. My mind goes there.
My thoughts are with you, Jay. Many hugs.
SJ
I have to say I’m appalled that someone as public about their cancer as you are is STILL getting accused of fraud. Moreover, you have a known history of pushing back, kicking things upstairs, and BEING RIGHT ABOUT IT. You would think by now the insurers would know to go bug someone more easily victimized. I’m so sorry. Hugs, hugs, hugs.