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[trave] In the USA

Depends om hour ponit of view.

Flying from DCA (where I’ve been treated) to PDX (where I live) is like flying than the mileage from London to Eastern Turkmenistan. I simply could not find a simpler “Europe is This Small” illustration. while DC and Portland aren’t nearest the farthest apart in the Lower Forty-eight. Throw in Alaska, Hawaii, Purto Rico, U.s Virgin Islands, American Samoa and the odd bits of rick here there are everywhere, you go a long way in this country on domestic flight.

Which is my have had so much trouble flying these pat two go-rounds. Sitting coach for 5-6 hours is barking mad even with anyone’s knees, let alone my various surgical and digestive issues.

It a running gag that Europeans have history while Americans have geography. I just hope yose guys across te pond are smarter.

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[personal|travel] Five things make a post for a flying day

Five things make a post. Or something. #blogworldproblems, I guess. Let’s see…

1) I am heading for the airport shortly to fly to DCA. There, Lisa Costello will pick me up, take me to dinner, then take me to NIH to check into their inpatient unit, pretty much for the month of March. The flight’s probably going to suck because of all the cancellations yesterday, which means severe overbooking today.

2) I continue to fear washing out of the trial at the last minute. My drop in baseline health these past 3-4 weeks concerns me. I have a tender lumpiness in my right side which I’m afraid is a result of the known rapid growth in my liver tumors displacing enough tissue to be detectable by touch. And this damned cough…

3) On a more-or-less unrelated note, I’d hoped to make a post this morning about atheist errors-of-thought, especially where it concerns the fungibility of faith. Or more to the point, lack of fungibility of faith. This is in part in response to [info]ericjamesstone‘s thoughtful essay And we will prove them herewith… in which he talks about (among other things) conforming to church doctrine with which he does not personally agree. He sees this as a test of faith (if I may simplify a bit), while I see this as evidence he’s in the wrong church. I’m pretty sure my reaction is simplistic bordering on insulting, and I wanted to analyze that in compassionate and respectful terms. But not this morning, it seems.

4) My dreams of late have been more and more chowder, less and less linear. I don’t believe my brain is decaying that fast (not an ordinary symptom of my kind of cancer, though intracranial metastases are a slight possibility), so I’m pretty sure my subconscious is working on a project. When it deigns to send me a coherent postcard, I’ll pass the word.

5) On a topic somewhat less to my own credit, I find lately that old hurts have been resurfacing in my thoughts. There’s precious little point to that, and it’s not the least bit constructive, but here I am. Like the chowdered dreams, my mind is trying to put things in order. I’ve gone through life not making enemies, though a few people have certainly gone out of their way to make me their enemy regardless of my actual words and deeds. But in this case I’m talking more about the usual hurts of life, lost friendships and fractured loves and “whatever happened to…” moments. Really, I don’t need these trips down memory lane amidst everything else that’s going on.

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[radiantlisa|travel] She’s leaving on a jet plane

Mother of the Child and I are off shortly to take Lisa Costello to the airport. She’s flying to Maryland today, to avoid a weekday flight next week, and because we had to plan her trip before we knew my confirmed dates. She’ll pick me up at the airport next Tuesday and take me straight to NIH. I shall miss her effervescent company this weekend, but I understand she’ll be visiting with old friends tomorrow, so perhaps constructive distractions will be in play.

Still, I wish we were flying together.

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[cancer|travel] An unexpected brief trip home

We received another email from my NIH doctors yesterday afternoon. Due to the extra time required for the genetic selection process, they will not be starting the first steps of my immunotherapy treatment until March 7th. Given that we’d originally expected me to be going back into the hospital about now, that’s a significant gap. So we’re going home.

As you might imagine, this led to something of a logistical fire drill yesterday afternoon and evening. We got everything sorted out, but it took a bunch of time and energy.

Had we understood this timing back when I had the surgery, we’d have gone home a week or two ago. While the extra time and expense spent being here in Maryland is more than a bit frustrating in retrospect, in the end it’s all good. Genetically personalized immunotherapy isn’t exactly a standardized process, seeing as how I am literally the first person in the world to be treated this way.

I’ll probably be coming back around March 5th, as I assume they will want to redo many of my lab tests, CT imaging, and so forth, before commencing treatment. Plus I need to have the subclavian catheter inserted. So Dad, Lisa Costello and I are flying home tomorrow. I’ll spend a couple of weeks sleeping in my own bed and hanging out with [info]the_child. I will also be At Home to family and friends in Portland (or from elsewhere if visiting or passing through), so I can renew some of my social connections.

Unexpected, all the same.

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[travel] More on the glamor of hotel living

Last night, perhaps an hour after I went to sleep, someone out in the hall was pounding on a door, shouting through it angrily. The rhythms of the voice didn’t sound like a lover’s quarrel, and nor like an angry drunk. More like a mother yelling at her kids, or maybe an older sibling yelling at youngers.

An hour or so later, it happened again.

At 2:30 in the morning, it happened again.

I got up, stuck my head out of my door, and said, “That’s three times in one evening. I’m calling the cops.”

The woman looked alarmed and said quietly, “There’s no need for the cops.”

No more noise.

I’ve never in my life threatened to call the police over hotel noise. And quite properly, what I should have done was call the front desk. But I didn’t know which room (or rooms) were involved. All I knew was that there was a recurring racket from someone whose personal worldview saw no problems in waking up an entire hallway full of sleeping people in pursuit of their issues.

I really, truly don’t get people.

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[travel] One of the perils of hotel living

We’ve been living in the Best Western in Rockville, MD lately, though in fact today Lisa Costello and I are decamping for Ocean City, MD for a quiet week before plunging back into the busy-ness of NIH and my clinical trial. But given my career of the past fifteen years or so (both Day Jobbe and writing, come to think of it), I’ve spent probably 1,500 or 2,000 nights in hotels in that time. I’ve experienced almost everything you might expect to in that time.

This morning one of the perils of hotel living was brought back to me in force. At 5:30 am on a Saturday, the alarm in the room next door went off at full volume. A series of beeps, followed by the jangle of a radio not quite tuned in properly. Loud enough to wake me from a these-days-rare sound sleep. After a couple of minutes, I got up and investigated. It was even louder in the hall.

Sometimes people check out and leave the alarm turned on. So I called down to the front desk and got no answer. I got dressed and took myself down to the lobby, where I found the night clerk and spoke to him. He said someone was checked in to the room next door. A few minutes later, heard loud knocking.

That damned alarm blared from 5:30 to 6:12 before cutting out. Later, when I went down to breakfast, I could still hear the radio through my neighbor’s door, though it was no longer blasting through the wall between us.

Hearing impaired? Ill? So drunk they couldn’t react to their alarm? Anti-social idiot? I’ll never know.

But yeah, this is the glamor.

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[travel|cancer] Maryland, My Maryland

Dad and Mom (who has been visiting) are checking out of our Rockville hotel today. Lisa Costello works today, but tomorrow we’re off to Ocean City for a week of quiet. We’ll back here in Rockville a week from Saturday. I expect to be called back into the NIH possibly sometime the following week, possibly not til the week after.

Originally it would have been early that following week, but the business of using my Whole Genome Sequencing data to provide genetic screening of the TIL cells is adding to our wait time.

Meanwhile, my side hurts a lot. Some ill-advised movement the other day set my recovery back a bit, and I have a wicked, painful knot in my chest which I’m pretty sure is a result of me favoring the area around the surgery wound. Still I am healing well enough that when I sneezed twice this morning, it was not mind-shattering agony. And I am finally able to sleep a bit.

Progress is made. Tomorrow, it will be progress headed eastward to the shore.

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[travel|cancer] Now in Bethesda, Maryland, and the unlikely way I got here

As of half an hour ago, I arrived at the hotel where Dad and Lisa Costello are staying. Though I was supposed to check into the NIH hospital last night, I will be there around 7:00 am this morning, about 12 hours late. My original flight to DC was cancelled yesterday morning due to weather, and a rather elaborate Rube Goldberg plan emerged in its place.

I’ll let my Tweetstream tell the story…

That doesn’t even cover all the bases, like the poor passenger having the panic attack and my long conversation about Omaha.

All in all, I got about three hours of sleep last night, non-contiguously. Also, I added close to $2,000 to my expenses in additional unbudgeted costs for this whole farrago. If you feel like it, please promote or donate to the Science Fiction Author on Trial (NIH trial, that is!) fundraiser for my NIH collateral expenses.

But I am here. And shortly I will be at the hospital, bushy-eyed and bright-tailed and ready to assist in advancing the cause of healthcare research.

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[cancer|travel] I am off to NIH, journeying in fear

The weather in Washington, DC, permitting, I am flying this morning by myself. Lisa Costello and Dad had tickets on a Sunday flight. They’ll meet me at Washington National Airport late this afternoon.

I check into the hospital this evening. There are some pre-operative tests tomorrow, mostly imaging. The party starts in earnest on Thursday.

Talking to my therapist yesterday, I realized that over the next month I’ll be going through the experience of surgery and chemo, compressed from eight or ten months down to a few weeks. Which is pretty overwhelming.

I am rather afraid of doing this, but I am more afraid of not doing it.

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[cancer|travel] The band is hitting the road

I’m not going to NIH for the next step in my clinical trial until Tuesday, but Lisa Costello and Dad are leaving this morning. We had to make a best-guess when we booked their travel, because our alternative was a very expensive last minute ticket purchase once we knew my NIH travel order date.

So they are off shortly. Mom and I are going to the airport with them. Then I’ll have an unusually quiet couple of days home alone before being off myself first thing Tuesday.

This such a different process than any of my prior treatment cycles. I am in such a different place. And it all just gets harder.

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