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[cancer] Field notes from Cancerland, heading out of town tomorrow edition - Lakeshore
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Jay Lake
Date: 2013-05-16 05:48
Subject: [cancer] Field notes from Cancerland, heading out of town tomorrow edition
Security: Public
Tags:art, cancer, child, family, friends, health, jerseygirl, movies, personal, radiantlisa, travel, videos
Generosity of Spirit

More generosity flows my way. @howardtayler has done some amazing things for me this week, with an able assist from his colorist Travis Walton. Howard teases his work here. Suffice to say this will be public soon, and you can all marvel at Howard's skill and wit, and understand how impressed and humbled I am by his support.

Airline Mileage

Yesterday's airline mileage appeal was a bit of a fiasco. I'd not checked into the airline policies for a while, and they have both monetized and restricted mileage transfers between private individual. Thank you so much to everyone who made the effort. Another reader found points.com, which I will be investigating today or tomorrow in hopes of arriving at a more useful solution. In the mean time, the original Big Project has proceeded down another path. I have several other Worthy Projects in mind, so if I can get this straightened out, the appeal will continue, albeit on slightly different terms.


I've been told that my prescription for Regorafenib has been approved. This drug is a specialty pharmacy item, which means it falls outside the usual infrastructure of pharmaceutical benefits. This includes pre-approval letters and me dealing with a designated mail order pharmacy for my medication supply. It also potentially included a whopping co-pay, but it turns out my carrier's pharmacy plan treated this as simply being at the high end of the formulary. Which is modestly annoying, but that's same $50 co-pay I have for Celebrex, Levitra, et cetera.

My Next Scan

I have been corresponding with my oncologist about my next CT scan. Those are supposed to be eight weeks apart right now. That's the minimum spacing recommended for clinical benefit. I also believe there are significant radiation exposure concerns with excessive scanning. In my case, I won't live long enough to experience that set of problems, but nonetheless the health and safety guidelines exist. The problem is, they want me to have the next CT scan eight weeks after I start taking the Regorafenib. As I am going out of town tomorrow for eleven days — the Nebulas in San Jose, then Rio Hondo in northern New Mexico — I won't be able to start taking the Regorafenib prior to May 27th at the earliest. And even that date assumes the specialty pharmacy comes through in a timely manner. Which puts me to eleven weeks or longer between CT scans. And creates the situation that we have 3+ weeks of tumor growth prior to the beginning of any hoped-for effects from the Regorafenib. I think we'd have both a growth rate assessment and a clean baseline for evaluation the new medication if we did a scan shortly after May 27th, but that is far too soon per the generic clinical guidelines. No answer yet, but it's one of the things I'm worrying about.

Tasking All the Things

Remember that big list of mine, of things that need doing before I die? [ jlake.com | LiveJournal ] Well, it's grown. And we're doing them. So an enormous amount of administratrivia is happening around Nuevo Rancho Lake. So far, most of the customer service reps, managers and whatnot we've dealt with have been very gracious. I feel like Robert DeNiro's Harry Tuttle in Brazilimdb ] being consumed by paper. Still, progress is being made.

My Coping

I've had several people note that I'm pretty cheerful lately. The not very hidden subtext is them wondering why I'm not wailing and rending my garments. Honestly, I'm not sure why I'm not wailing and rending my garments. I suppose because there's no time for that sort of thing. I don't have much life left to live, especially in something like normal health, and I have too much to do. Love my child, write my stories, be good to Lisa Costello and Jersey Girl in Portland and mother of the child and my family and my friends and my fans and my co-workers and and and. It is true that my current good nature is a very thin veneer, subject to cracking at even a glancing blow. Beneath that is a bubbling stew of anger, grief and terror, spiced with a catalog of other negative emotions. Nonetheless, here I am. And forward is the only direction for me.

Thank you all for reading, for caring, for reaching out.

Post A Comment | 12 Comments | | Link

Kevin Roche
User: kproche
Date: 2013-05-16 13:12 (UTC)
Subject: (no subject)
We will see you at Nebulas weekend. It turns out ThinBot's appearance has been rescheduled to Friday afternoon, so you might get to see it in action after all.
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Jay Lake
User: jaylake
Date: 2013-05-17 03:09 (UTC)
Cool! I have a luncheon from 1-2:30 ish or so. After that I'll be rattling around until the mass signing. Do you have my cell phone number for texting purposes?
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User: a_cubed
Date: 2013-05-16 13:52 (UTC)
Subject: (no subject)
THat's a great idea to try and help keep yourself positive, both for your own benfit and that of those around you - you don't have time to waste being overly cranky and pissing and moaning, only time to really live. Go for it, as much as you can!
Laugh because otherwise you'll cry as "they" say.
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User: lianneb
Date: 2013-05-16 17:31 (UTC)
Subject: (no subject)
Nonetheless, here I am. And forward is the only direction for me.

Kind of like my dad. My mother died on Easter Monday this year, and for the first few weeks, my father lived on lists. All the many things that needed to be done about health coverage (he was on her retired public servant plan), her pension, dealing with credit cards and banks and all the other things that needed to be done.

Basically, he kept moving forward by focusing on what needed to be done next, and not worrying about what would happen months down the road. It's been a month and a half, and he's finally reaching the point where he can think longer term.

You sound like you're coping well for the moment, so keep doing what you need to in order to keep functioning. And don't be afraid to crack once in a while and go hit (non-living) things when you need to release some pressure.
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Kari Sperring
User: la_marquise_de_
Date: 2013-05-16 17:42 (UTC)
Subject: (no subject)
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User: martianmooncrab
Date: 2013-05-16 20:07 (UTC)
Subject: (no subject)
why I'm not wailing and rending my garments

you have better things to do with your time, and the good stuff is a much better choice. You know your Use By Date, and you got things to do.
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A wandering fellow on the long road
User: tsarina
Date: 2013-05-16 21:12 (UTC)
Subject: (no subject)
Well, obviously you can't rend your garments because the photo sensitivity!

I have always wanted to run a business where you could go in and rent a baseball bat and some protective eyegear. Then you could pick out some old TVs or dishes or weird junk bought at Goodwill, and smash the hell out of it.
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User: klwilliams
Date: 2013-05-17 00:03 (UTC)
Subject: (no subject)
All MS drugs have to come via specialty pharmacies, and I really recommend Walgreen's Specialty Pharmacy (866-202-4014). They are completely on the ball. The different departments know what the others are doing, and everyone actually does what they say they're going to do when they say they're going to do it. One of the best things is that they'll ship the drugs wherever you want them to, and if you can't wait around at home all day and if there's a Walgreen's near where you are they'll deliver to the Walgreen's (and you just stop by and ask for the medicine, with no extra payment). So in theory, you could have your drugs delivered to Rio Hondo, since they use UPS.
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shaolingrrl: muppets
User: shaolingrrl
Date: 2013-05-17 03:35 (UTC)
Subject: (no subject)
Yay! I get to see Jay Saturday!
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User: elisem
Date: 2013-05-17 06:06 (UTC)
Subject: (no subject)
Here is a hug-thing. It is yours. I wave hello.
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Max Kaehn: MAX ZEN
User: slothman
Date: 2013-05-17 07:33 (UTC)
Subject: (no subject)
Keyword:MAX ZEN
May you be free of form 27B/6!

I’ve had a whole lot of overly-interesting things crop up in life lately (a small fraction of the amount you’re dealing with), and yeah, “I don’t have time to freak out, there’s too much to do!” makes a whole lot of sense to me. I hope you get a few quiet hours for some sanity-maintenance activities.
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