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[food|repost] Open dinner in Rockville, Maryland Sunday 2014-01-05

This is a repost, with light edits for clarity.

As mentioned, I am holding an open dinner today, Sunday January 5th, at 5 pm at Gordon Biersch in Rockville, MD.

200 East Middle Lane, Unit A
Rockville, MD 20850
301-340-7159

As always, these are Dutch treat, and anyone who can read this is invited. We don’t need to be old friends or even online acquaintances, though I do love to see my friends. The whole point is to meet people, after all.

I’m aware the weather today may be poor, but it’s the only time slot I have this trip than I can commit to without the reasonable possibility of cancellation. Unless the weather is truly dreadful, I will be there. Please RSVP if you can, it helps with talking to the restaurant.

See some, all or none of you there!

[photos|travel] The weirdest rental car ever

We have this rental car, from one of the big companies. It has Arizona plates, with almost 50,000 miles on it. The vehicle is in excellent condition. And it’s pretty highly tricked out, for a rental car. Most of those are mid-range trim lines.

But there’s several weird things going on.

The car has Sirius/XM satellite radio, with the little sharkfin antenna on the roof. It has OnStar, with the big flat plate behind the rear view mirror serving as that antenna. But it has two other antennae, clearly aftermarket installations, that serve no obvious purpose at all. There’s no third party navigation system, for example (think Hertz NeverLost). And it’s got a couple of odd third party additions to the dashboard and console.

IMG_2747
This appears to be a badge holder, as the clip extends about three feet and retracts. Though why you would keep a badge permanently inside a vehicle I don’t know, as that seems like terrible security to me. I’ve never in my life seen one of these permanently attached to a car console.

IMG_2749
This thing is on the dash just below and to the right of the steering wheel. We cannot make it come on or do anything. It might be a control for an aftermarket in-car cellular integration, except the car has a factory-installed Bluetooth integration through the sound system that works just fine, so that makes no sense.

IMG_2750
This is one of the two aftermarket antennae that serve no obvious purpose. It’s round, and a couple of inches in diameter.

IMG_2751
This is the other aftermarket antenna that serves no obvious purpose. It’s a little bigger than an inch square. When you first start the car, this one has a blinking LED that goes green after a minute or so, seeming to indicate that it is successfully acquiring signal.

It’s almost as if the vehicle used to be a law enforcement or security vehicle that wasn’t fully decommissioned, except you’d never find one of those in a rental car fleet from a major rental agency. They buy all their cars brand new in bulk contracts from the major manufacturers.

I’ve rented hundreds of cars over the years, and I’ve never seen anything quite like this stuff. Anybody know what all this is for?

[links] Link salad lays low on Sunday

Alien Abduction Lamp — I need this. (Via [info]garyomaha.)

4 Things I Learned from the Worst Online Dating Profile Ever — Wow…

100-Million-Year Old Amber Fossil Preserves Ancient Flowers Caught In The Middle Of Sexual Reproduction

Go to Jupiter for the Best French Fries

The helical model – our solar system is a vortex — A cool visualization of the solar system. (Via [info]threeoutside.)

Scientists solve mystery of UFO lights appearing just before earthquakesElectrical light shows known as earthquake lights may occur at rifts, or nearly vertical faults in the Earth’s crust, new research suggests.

Living at a Time of Post Natural Ecologies

Methane release around Arctic islands predates recent climate changeAreas where methane bubbles up from seafloor have been around for centuries. Ah, science.

Government Might Deregulate Corn, Soybean Seeds — Uh, we are talking Agent Orange here. Ring any bells? (Via [info]danjite.)

What happens if authorities seize your laptop? — Too bad for you, basically. Though why the BBC is quoting the Heritage Foundation as a source on anything rational or evidence-based is beyond me. (Via Scrivener’s Error.)

The NSA refuses to deny spying on members of Congress — (Via [info]danjite.)

2014 looking to be a gay old year for anti-gay Republican Congressman Aaron SchockSo Aaron Schock is happy to affirmatively harm people based on their sexual orientation, but expects people to not affirmatively harm him based on his sexual orientation. Ah, Republicans.

Something to BeholdIt’s become something of a cliche: disabled, aged or relatively impoverished whites who literally could not survive without federal government assistance in many case nonetheless raging against Washington, “hand outs” and government dependency. It’s there with a vengeance in this article in National Journal by Beth Reinhard on GOP plans to double down on race-based class warfare as the ticket to success in the 2014 elections. When you can’t win on your ideas, fear mongering works almost as well as lying. Hence the GOP’s “generate more angry white guys” strategy, of which this is merely latest iteration. Because basing your governance on divisive hate is the patriotic thing to do!

?otD: Can you hear me, Phil?


1/5/2014
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 8.0 hours (interrupted)
Body movement: 30 minute stationary bike ride
Weight: n/a (traveling, no scale)
Number of FEMA troops on my block faking evidence for evolution: 0
Currently reading: n/a (chemo brain)

[food|travel] Open dinner in Rockville, Maryland Sunday 2014-01-05

As mentioned yesterday, I am holding an open dinner tomorrow, Sunday January 5th, at 5 pm at Gordon Biersch in Rockville, MD.

200 East Middle Lane, Unit A
Rockville, MD 20850
301-340-7159

As always, these are Dutch treat, and anyone who can read this is invited. We don’t need to be old friends or even online acquaintances, though I do love to see my friends. The whole point is to meet people, after all.

I’m aware the weather tomorrow may be poor, but it’s the only time slot I have this trip than I can commit to without the reasonable possibility of cancellation. Unless the weather is truly dreadful, I will be there. Please RSVP if you can, it helps with talking to the restaurant.

See some, all or none of you there!

[cancer] Field notes from Cancerland, Maryland follies

Weird tests

The fecal occult blood test is one of my favorite medical test names ever, edging out even Western blot. Yes, there was poo flinging around here this morning at Nuevo Rancho Lake Oriente. The things we do for medical science.

Slotting in with an NIH team

I appear to be slotted in with an NIH team. I won’t know formally until Monday, and even then there are several major choice points looming ahead. Once I am formally enrolled and understand the public profile, I’ll report in more detail. Suffice to say it has been an incredibly productive week. My head is practically overflowing with information. I think we’ve taken 20,000+ words of notes, not to mentions charts, spreadsheets and selection criteria matrices. Also, I apparently continue to distinguish myself as self-directed patient man.

Time here in Maryland

Due to the major choice points referenced above, my time here in Maryland is still a nebulous quantity. At this point, I expect to be here most of the next two months, through the end of February, but my exact comings and goings back to Oregon and in-patient hospital time are still subject to considerable revision. When I know more, I’ll say more.

Stuff to do next week

We’re staying through next Saturday at a minimum. I have a surgical clinic appointment next Friday, and prior to that probably at least one other clinic appointment as well as a handful of screening tests and assessments focused on both the proposed surgery and on the subsequent treatment protocol. In other words, intermittently and unpredictably busy.

Hope

We’re not hoping for a cure here. We’re hoping for a meaningful halt or reduction in tumor growth. If we can achieve that, we can look at the next steps. As I’ve said before, hope can be very poisonous for me. But the fact that we’re doing interesting things at the cutting edge of medicine fills me with an emotion not unakin to hope. It’ll do, for now.

[cancer] Field notes from Cancerland: New Year’s Day edition

Dreams

Last night I managed to have an anxiety dream which combined pretty much every oneiromantic cliche that ever existed into one simmering subconscious grab bag. Lisa Costello and I were staying in a college dorm, but I was splitting my time between attending classes and visiting an infusion center for treatment. Where I kept flirting with the nurses. Lisa tried to get me to go to a chemistry class with her, which it turned out I’d enrolled in but forgotten to attend. Instead I went over to the infusion center parking garage, where I could not find my car. Suddenly, I was surrounded by screaming kids embarking on a field trip, being rather badly led by the head financial analyst from my Day Jobbe. There was more, but basically, this dream combined school anxiety, job anxiety, relationship anxiety, financial anxiety, cancer anxiety, and “Dude, where’s my car?” anxiety. Oh my poor brain.

NIH

These past two days at NIH have been action-packed, to say the least. A fascinating experience to even be there. One big difference is that it’s a research institution, not a treating hospital. This means even really basic stuff like hallway signage and the behavioral priorities of the support staff is different from anything in my experience. With one minor exception, the process has been excellent, far exceeding both my expectations and my hopes. We still have no real idea where we’re going to land in terms of enrolling in a study (or possibly not), but we’re learning a great deal about me, about medical options, and about the way things are done at the cutting edge of oncology. As I mentioned yesterday, I will make more detailed reports later, once I am clear on confidentiality issues. I will say that a “Newcomer’s Guide to NIH” would be a hella useful thing to write.

Social Life

Other than seeing family, we’re not being social here yet, again with one exception. Too much to do at NIH, and my head tends to be brimming with thoughts and data at the end of each day. However, today we are meeting Slacktivist Fred Clark for lunch, as he is kind enough to drive down here to see us. I’ve admired Fred’s blogging for a long time, and suspect we are kindred spirits, so I am really looking forward to seeing him in person.

Schedule in Maryland

We will make a decision tomorrow afternoon or Friday morning about whether we’re going home over the weekend or staying into next week. This has to do with which path we follow for the clinical trials. Some paths require me to stay on for a while, some paths have a day or two more of testing (likely Monday and Tuesday), some paths have me go home and come back later. Once I know how that’s working out, I will make an effort to make myself available for social time with area friends and fans.

Happy New Year

This is quite likely the last New Year’s Day of my life. I intend to enjoy it, and hope you can do the same.

[travel|cancer] In Maryland again

Travel yesterday was irksome but not dire. Both flights were delayed for a combination of weird, trivial and unannounced reasons. Because travel.

Dinner last night with my brother and his new spouse. Today we are laying low.

Monday, we begin two days of appointments at NIH in Bethesda. I find myself a little freaked out at the thought of some of the procedures, which is not particularly rational or typical of me.

Ah, stress.

[cancer|travel] Heading to Maryland, again

Dad, Lisa Costello and I are leaving this morning for 12/30 and 12/31 medical consultations at NIH. We are flying so early so as to avoid being trapped by possible weather delays over the weekend, and thus missing the appointments.

I will be seeing doctors about intake into two different trials. It’s our hope to have enough information to make a decision over the New Year’s holiday and sign up for one study or the other on 1/2/2014. At that point, we will then be able to evaluate our schedule for how long we will be remaining in Maryland.

I will update when I know more. If I do have significant time on the ground and am feeling good, I’ll make myself available for social opportunities in the Baltimore and DC areas.

[cancer|personal] Trapped in a whirling morass of urgency, as my friends grow ever more distant

Last night I dreamt something long and complex, which is now lost to me. However, at the end of it, I was in a coffee house on a college campus somewhere. It was indoors, part of a student union building or some such. The students around me were of various ages, and one or two had small children with them.

I’d been drinking hot chocolate and reading. It came time to leave so I began to pack up. As I wound my scarf around my neck, my hat fell off. When I bent to pick up my hat, my gloves slipped out of my coat pocket. I couldn’t fit all my stuff into my pack. And so on.

Around me the coffee house was closing up. As people left, they kept dropping things too. I started trying to collect the other lost belongings in the hopes of returning them. The barista was pushing the tables to the back and stacking them so she could mop the floor. My table disappeared, and most of my stuff with it. I kept running around desperately trying to retrieve everything. I only succeeded in dropping more and more of what was in my arms, most of it not even mine.

It doesn’t take a psychology degree to work out the meaning of that. No more than most of my dreams. And this has been my week. If there is no significant crisis or disaster in my life today, it will be the first day since last Sunday for which that has been true. I have rushed from one problem to the next, solving few of them, and seeing most of them generate more problems like a runaway software process spawning malign threads.

Such is my life these days. This week has been an unusually pointed example. But in all seriousness, Lisa Costello estimated recently that based on the experience of the past few months, even on my best weeks I cannot get any three days in a row without something overwhelming happening.

This distraction factor spills over into everything. Ever since the cancelled trip to Europe, I have been unable to schedule social time with friends. The big stuff is more obvious — because my medical schedule keeps shifting so randomly, I cannot make commitments to out-of-town friends who need lead time to arrange work vacation days and procure plane tickets. Less stringently, I can’t even commit to Seattle friends who can be more flexible because they’re driving or taking the train or the Bolt Bus.

But even the local stuff gets killed. I’m going to Maryland at the end of the month to see about two different clinical trials at the National Institutes of Health. That means I won’t be here for my December 31st appointment with my palliative care doctor. They’re impossible to see on short notice, so I had to take a reschedule for Monday, December 16th. Exactly when I had a midday date with Jersey Girl in Portland. Her daily/weekly schedule and mine are so misaligned even normally that when I have to cancel with her, it can take us weeks to reschedule.

I can’t keep up with anything anymore, not with the absolute priority of maintaining what’s left of my life and health, and the resultant very erratic and frequent scheduling demands of that process. So my out of town friends slowly stop offering to come see me because I can never commit to a time. Most days I’m too rushed and fuddled to even be smart about keeping up emails or texts or phone calls whatever, so it’s harder and harder to maintain my relationships even remotely. My local friends get used to me cancelling and being unable to reschedule easily. My life narrows a bit more week by week, as it does in so many other ways.

My attention span degrades, my social availability degrades, and instead I am trapped in a whirling morass of urgency. I hate this.

Welcome to late stage cancer, Jay.

[cancer] More on clinical trials, plus the existential weirdness of health insurance carriers

I now have a screening and intake appointment at the National Institutes of Health (NIH) in Bethesda, Maryland, on December 30th. Due to a combination of flight availability and a desire to have a margin of error in case of severe weather issues, Dad, Lisa Costello and I are flying east several days earlier. As we are working on multiple tracks at NIH, both through the National Cancer Institute (NCI) and elsewhere within NIH, I will wait until more is resolved before detailing those steps and what’s involved in the proposed studies.

It’s been quite an effort to get this far. Phone calls all over the place, lost forms, conversations with doctors both here in Oregon and at the NIH (the latter by telephone, obviously), me having to personally and politely poke the Pathology department at my treating hospital, records, timing. Amazing stuff.

In the mean time, I am not entering a trial here in the Portland area which was under consideration. One of the side effects they are researching is severe psychological disturbance, and given my long-term mental health history (severe chronic depression with a teen-aged suicide attempt) we all felt I was a poor candidate. Also, other trial leads keep bubbling up.

Yesterday there was a moment of irony so deep you could have forged it into a plowshare. I was on the phone with UnitedHealthcare, my health insurance provider. We were discussing benefit coverage for clinical trials. According to UHC, coverage for the routine care portion of clinical trials — meaning everything but the cost of the drugs or procedures being tested, basically — is a requirement of the Affordable Care Act, a/k/a Obamacare. (So chalk that right up to another thing Republicans want to strip away from the sick and the dying.) I am covered just as I would be for those same procedures are part of ordinary treatment, assuming the site where I am being treated is in-network.

Yay, says I.

Not only that, I am told that UHC covers travel expenses including airfare and lodging, to seek clinical trials more than fifty miles away from my home.

Yay, says I.

There’s only one catch. The clinical trial in question has to be approved on a case by case basis for the routine care coverage, the primary criterion being that the trial meets NIH and NCI guidelines. Well, since I’m going to the NIH and the NCI, this seems like a no-brainer.

Yay, says I.

There’s only one other catch. The travel stipend is valid only for clinical trials taking place at UHC designated “Cancer Centers of Excellence.” This is mostly places you’ve heard of, like the Mayo Clinic, Johns Hopkins University, M.D. Anderson Cancer Center and so forth. Well, it doesn’t get much more excellent than NIH and NCI, institutions which had already been cited as the reference standard for the validity of clinical trials.

Yay, says I.

Not so fast, says UHC. NIH and NCI are not considered a “Cancer Center of Excellence” by my health insurance carrier.

WTF, says I. Your own gold standard for clinical trials isn’t a center of excellence for clinical trials?

Nope, says UHC.

So, no travel reimbursement. (This is not as bad as it might seem, as I am likely eligible for a stipend from NIH. It’s just weird.)

And actually, I do sort of get where they’re coming from. The “Cancer Center of Excellence” policy at UHC has broader applications around second opinions and treatment choices. NIH and NCI aren’t treating hospitals, they’re research institutions. The doctor:patient ratios are very different, the available bed counts, etc. Whatever the metrics are, they have to be skewed.

It still seems very strange to have a benefit for clinical trials, including travel, and not consider the pre-eminent cancer research institution in the United States an eligible destination to provide clinical trials. Oh, well. At least NIH and NCI are in-network for my carrier.

At any rate, we have an appointment, and we shall go, and we shall see what happens.

[links] Link salad is big and round and three to the pound

Dementia: Terry Pratchett ‘angry’ with government

Meet Your Body’s Death EatersFrom brain to blood to bone, macrophages take out our cellular trash. (Via Daily Idioms, Annotated.)

Calvin and Hobbes on ebooks — Hahahah.

Twitter’s World — Languages and Twitter.

Prosthetic Arm Found in Second-Hand Shop — Ah, headlines.

Irrefutable Proof that Santa is Odin — (Via [info]rekre8.)

‘Get me off this plane’: Man locked in dark cabin in worst layover ever — Wow. (Via RWN.)

Fat Flag — Food, art, nationalism. (Via [info]willyumtx.)

Europe’s rarest orchid rediscovered in the Azores

Blistering exposé prompts Johns Hopkins to suspend black-lung screeningsCoal companies paid the Baltimore-based university handsome sums to screen the claimants for the disease. After reviewing chest X-rays, the university’s scientists almost always concluded that the scans did not show black lung — a conclusion which often overwhelmed any other medical opinion in the case. (Via Slacktivist Fred Clark.)

What Names are Normal? Shifting the Center of the World — Culture and names.

Online Dating Shows Us the Cold, Hard Facts — Fascinating article, although it makes a couple of logical leaps.

“She Said ‘This Is a Gun.’ I Said No, It’s a Prop for My Monkey.” — Ah, TSA, we hardly knew ye.

At Least 194 Children Have Been Shot to Death Since NewtownThe NRA says arming more adults will protect kids—but most are killed at home, our investigation shows, often with unsecured guns. Yep. Definitely safer dead by those guns than they would have been remaining alive in a gun-free household. Ask any gun owner.

The Heartland Institute and the American Meteorological SocietyIf climate science really is in such disarray as the deniers claims, then why do so many resort to misleading tactics so often? Why post misleading graphs, why cherry pick data, why engage in egregious ad hominems, why send out emails about papers that say the opposite of what the paper actually concludes? If their claims are correct, then why even risk the perception of impropriety? It might seem as if they’re more interested in scoring political and ideological points rather than scientific ones. But then, the evidence is solidly against them. So are 97 percent of the scientists who actually do research in climate science, as are the data, the science, and the reality of global warming. As with virtually all conservative causes, bearing false witness is far more productive than providing evidence, given that evidence-based reality almost never favors the conservative viewpoint.

Dear Pres. Obama: Dissent isn’t Possible in a Surveillance State — Sigh.

?otD: Does your staff have a knob on the end?


12/11/2013
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 7.5 hours (solid)
Body movement: 30 minute stationary bike ride
Weight: 239.4
Number of FEMA troops on my block forging presidential birth certificates: 0
Currently reading: n/a (chemo brain)

[travel|cancer] My misadventures getting home yesterday to see the doctor today

There’s no real way to make a coherent blog post out of this, so you’ll have to settle for a bit of narrative.

Getting home from Omaha yesterday was an epic effort, but I made it. My luggage did not. My irreplaceable Mongolian camel fur hat apparently did not, though there’s some hope I absent mindedly packed it into my luggage (which I never do on purpose).

I had five different flight itineraries yesterday. That is to say, at different points in the process, I was booked on five different flights out of Omaha before I finally managed to leave. American cancelled my original route through DFW on Sunday, the day before I was to fly, due to extreme weather in DFW more or less crashing their operations. I was rescheduled to a Monday flight through ORD.

When I got to the airport in Omaha early, they rescheduled me again at the check-in desk to an earlier flight through ORD, to help me make my connection to PDX. That flight began posting later and later, until was both later than the flight that came after it which I had been previously scheduled on, and late enough to make me miss my connection at ORD. It was also clear the later flight was going to be postponed.

I went to the American Airlines counter agent and said, “Look, I’m a terminal cancer patient. I have two oncology appointments tomorrow. I have to get home tonight. Can you reschedule me through Denver on another airline, since both Dallas and Chicago are such a mess?”

They’re not really supposed to do that when they still have available seats in their own system, but he poked around and was very helpful, placing me on a set of Frontier Airlines flights that went OMA-DEN, then DEN-PDX. Since I’d already checked in, he called down to the American baggage room and had my bag transferred to Frontier.

The earlier Frontier flight was full, so I wasn’t leaving til that evening. Then Lisa Costello texted me that the evening flight had posted a two-hour delay, which would again make me miss my PDX connection, stranding me in DEN. I went up to the Frontier gate agent and told him the same thing I’d told the American agent. He put me on stand-by, then got me on the plane in their ‘stretch seating’, which is what Frontier has instead of First Class. I’m pretty sure they’re not really supposed to do that, either, especially since I wasn’t even a Frontier customer in the first place.

I finally got on a plane leaving Omaha, my fifth scheduled flight out. I have no idea what happened to my bag at that point. My connection in Denver going to Portland was almost two hours late, but I got out of Denver and home last night. Frontier has no idea where my bag is, because I do not have a Frontier Airlines bag check tag, due to the interairline transfer back in Omaha, and they can’t trace it through the American Airlines bag check tag. We’re hoping it came in overnight from Omaha via Denver, but given the other delays, it may still be languishing in Omaha or in Denver. As me getting home was the critical issue, I am not grumpy about this. I would like to see my bag again sooner or later.

At any rate, on a day when well over a 1,000 flights were cancelled, thanks to the flexibility of two gate agents, one for American Airlines and one for Frontier Airlines, I got home. My first oncology appointment is at 8 am this morning, my second is this afternoon. I will make them.

So my thanks to both airlines.

Now I’m off this morning for some bloodwork preparatory to tomorrow’s monthly consultation with my medical oncologist. This afternoon I have a screening and intake appointment for one of the clinical trials I am trying to engage with. Overnight has brought the Portland area radically unseasonal snow and ice, which will make getting around today a lot more exciting than it should be.

But I’m here, and I can make it in to my appointments. Thank you American, and thank you Frontier.