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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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[cancer] A bit more detail on my oncological hypochondria

I’ve mentioned numerous times enjoying what I sarcastically refer to as “oncological hypochondria”. Meaning, experiencing every somatic change or irregularity in my body as if it were a sign of impending trouble on the cancer front.

This is less of a joke than it used to be, given that I am probably entering my terminal decline right now. It used to be that when I had a problem, I wondered if that meant the cancer was returning. Not so much any more. The disease is back with a pervasive, terminal vengeance. Now when I have a problem, I wonder if that means a step in my irreversible slide toward death.

Specific things that are going on right now:

Oversleeping — I am sleeping more than I used to. That’s normal for any post-operative patient, and I am recently post-operative. It’s also one of the specific markers of terminal decline, at least given my most likely failure modes. I cannot judge whether the oversleeping is one, the other or both.

Reduced energy — For example, Lisa Costello and I yesterday took the Metro from Rockville to DC to have lunch with her Day Jobbe workgroup, which is based in downtown DC. Two forty-five minute Metro rides and twenty minutes of walking back and forth in the cold absolutely wiped me out physically and mentally for the rest of the day. As with the oversleeping, this could be a post-operative issue, or a harbinger of terminal decline, or both.

Kennel cough — I’ve got a very odd little cough these days. It’s not connected to a sore throat, post-nasal drip, or any sign of impending infection. I just cough, a tiny, little apologetic thing like a baby’s cough, that often comes in pairs. My best guess is that I am producing more saliva than I used to, and it’s draining into the back of my throat. What the hell does this mean? I don’t know. Cue more worry.

Chest pain — Ok, let’s get real. I had a right thoracotomy less than three weeks ago. Of course I have chest pain. But the pain has settled in a spot below and to the left of my right pectoral. Which was in no way directly affected by the surgery. Likely this is a knot of referred pain, perhaps the trunk end of the nerve on that rib, but it’s persistent and annoying, and seems to be happily outlasting the receding pain from the surgery site itself. (Sites, actually, since I had VATS surgery, meaning there are five small but distinct entry and exit wounds.) What does that mean?

Appetite — My appetite continues irregular. I eat a very modest breakfast, tend to eat a full lunch or close to it, and eat a very modest dinner. I’m pretty sure my calorie intake is below target now, though we don’t have a scale in the hotel, so I can’t track any weight swings, which for me based on experience are known to be a pretty good proxy for calorie intake. Like extended sleep hours and daytime lassitude, reduced appetite and weight loss are symptoms I’ve been told to expect in the process of terminal decline.

In a sense, this is all dithering. I’m dying. That is a thing which is true. What we’re up to here at NIH might buy me some time, maybe months, maybe a year, though more likely not. It won’t cure me. My body is under assault from within, and at some point this endless stubbornness of mine that has kept me going will collapse under that assault. Still, I watch the signs, wondering which twinges are just middle age and hard use, and which twinges are glaring idiot lights on my personal dashboard of death.

Weirdly, some days I just want to get on with the business of it. So, weirdly, some days I almost hope for the worst.

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[cancer] Field notes from Cancerland, gearing back up for the hospital edition

Where’s Jay

I am back in Rockville, MD, with Lisa Costello and Dad, waiting for the call to go back into the hospital. We had a lovely week in Ocean City. At this point, given the extra step of the mutation-driven selection of my TIL cells, I don’t expect to go into the hospital before next week, but anything is possible.

The weather outside is frightful

Not really. Though it’s been mighty cold almost the entire time we’ve been in Maryland, including the December/January trip for study enrollment. Not one, but two polar vortices. Meanwhile, back in Portland, snow accumulation yesterday was about 10 inches. With up to an inch of ice atop that by tonight thanks to freezing rain. This in a metropolitan area with no snow plows, salt or sand trucks, or (except for the winter sports people) much experience in snow driving. [info]the_child has been home from school since midday Thursday, and I’m pretty sure is getting cabin fever.

Restarting my routines

This morning I spent ten minutes on the recumbent bike in the hotel gym. That’s the first time I’ve exercised (other than incidental walking around) since the surgery. My legs and lungs were doing fine, but I was starting to get pain in my right chest, associated with the surgery site, so I stopped. I also resumed my formal meditation practice this morning, albeit at a shorter time than usual. So I’m getting back to what passes for normal these days. Until the hospital interrupts it all again.

The chest pain

No, not in the heart attack sense. Post-operative pain and discomfort in my right chest. The actual surgery wounds vary from inert to uncomfortable to mildly painful, depending on my body posture and activity level. Lying in bed reading Facebook, they don’t bother me at all. However, the knot of pain in my rib (number six, I think) persists with annoying consistency. The pain knot isn’t actually at any point directly affected by the surgery. I believe, based on my prior experience of my left thoracotomy back in 2009, that I’m experiencing referred pain from the surgery site.

To be clear, everything I have now is low-grade pain, falling somewhere between discomfort and two or so on the pain scale. Irritating and distracting, but not debilitating. Given that I’m only seventeen days out of surgery, that’s just fine with me.

The intersection of surgical recovery and terminal decline

All of the above being said, my oncological hypochondria persists. I should be moving along nicely into my terminal decline about now. So I wonder, is this chest pain a symptom of larger issues? Am I not going to heal completely from the surgery due to my body’s depleted ability to respond? Why is my GI doing [whatever it’s doing today]? I’ve been oversleeping, by my standards, but I know that’s perfectly normal for post-operative recovery. I keep wondering if I should be doing better than I am. It’s a lovely place to be, inside my head.

Attitude

I’ve had a number of occasions to recount my medical history recently, ranging from abbreviated casual conversations to my recent visit to the urgent care center in Ocean City to have my stitches removed. Almost without exception, people compliment me on my attitude. You know what? My attitude sucks. It’s terrible. I’m always torn between rage and grief and fear. But I don’t wear that around. I don’t lead with it, and I rarely follow up with it. Not because I’m suppressing or in denial. Rather, because angry and depressed is no way to live. So I choose otherwise. But the hard, bitter reality is never far from the surface. Whenever someone tells me I have a good attitude, I can feel the monster flashing a fin.

Still looking at death, every day

In the car driving from Ocean City to Rockville yesterday, Lisa Costello talked about what we refer to as “cancer thoughts”. Mine and hers, though mostly mine. It’s not a frequent topic between us. For one thing, most of what needs to be said has been said. For another, it’s a godawful buzzkill. Most of the time you just have to live your life. Even now, when I’m a giant sack of tumors with a punched ticket, we still have to live our lives. But it’s always there. Breathing in my ear. Freezing my heart. Talking to me in the twinges and cramps of my body. There is no escape.

I miss my willful innocence.

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[photos] The Delmarva Peninsula and Wallops Island

Yesterday I drove down the Delmarva Peninsula to NASA’s Wallops Visitor Center, plus a quick swing through Chincoteague. I’ll observe that the Virginia end of the peninsula is much more economically distressed than the Maryland end, judging by the abandoned housing stock, the desolate small town business centers, and the general depopulation. The whole area had something of a Blair Witch vibe. Also, Virginia doesn’t seem to be able to pick up their roadside litter nearly as effectively as Maryland, which is a passive testament to constrained resources.

Still, it was pretty, if a bit strange.

The Wallops Visitor Center was fun and kind of cute, basically a small and slightly random museum to NASA operations with an understandable focus on the site’s role. Sadly for my goals of the day, there’s no longer any public access to the Mid-Atlantic Regional Spaceport, or anywhere within line of sight of it, except for a little bit of on-the-horizon visibility from the Chincoteague causeway.

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Abandoned house in Horntown, VA.

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Yard in Horntown, VA. Note the egret stencil spray painted on the side of the shed.

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Side road near Horntown. This looked unaccountably spooky to me.

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Gulls at Chincoteague. I didn’t have the right camera with me, so it doesn’t come out well, but this picture has a lot of gulls in it.

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Abandoned drive in movie theatre, West Ocean City, MD.

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Observation deck of the NASA Wallops Visitors Center.

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Rocket on static display at the NASA Wallops Visitors Center.

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Another rocket on static display at the NASA Wallops Visitors Center.

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Spherical movie screen at the NASA Wallops Visitors Center.

Photos © 2014, Joseph E. Lake, Jr.

Creative Commons License

This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

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[photos] The beach in winter at Ocean City, MD

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Looking out across the porch of our room

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The same view at sunrise this morning

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Our hotel, as seen from the beach

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Me, on the beach yesterday

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Panorama of the empty beach about noon yesterday (click to embeachanate)

Photos © 2014, Joseph E. Lake, Jr.

Creative Commons License

This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

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[personal] Continuing to lay low

I had been thinking about driving down to Wallops Island today to visit NASA’s Wallops Flight Facility, as well as the co-located Mid-Atlantic Regional Spaceport, because, hey, MARS. But my right chest still aches enough to be distracting as well as serving as an impediment to my full range of motion. This probably means I should not be operating a motor vehicle.

Plus it’s cold and gloomy out there.

Tomorrow, if I feel up to it, I shall go. We’re pulling up stakes Saturday morning and heading back to Rockville to be ready for the next round of healthcare festivities at NIH, so if I don’t make it tomorrow, I shan’t make it at all.

In any event, I am laying low today. My ambitions have been scaled back to eating meals and maybe a walk on the beach.

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[personal] The things I did yesterday

I slept in.

I watched the beach out of the windows of our hotel room.

I had the last stitches from my thoracic surgery removed at an urgent care facility here in Ocean City. (Ouch.) Some pleasantly unexpected personal kindnesses were exchanged.

Lisa Costello and evacuated our room when the hotel alarms went off, slogging through the near-freezing, blowing sideways rain to reach the lobby rather than walk through the building. There we spent twenty minutes or so chatting with the day manager whilst emergency responders tramped around the hotel verifying that it was a false alarm.

I re-read some C.J. Cherryh. I’m still not doing well with new material, but I’m able to reread old material which appeals to me.

We had a truly excellent calzone for dinner at Pizza Tugos.

How was your day?

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[photos] The view outside my hotel window

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I quote Lisa Costello from her — “The air smells like ocean and the beach has snow on it, with little seagull footprints.”

Photo © 2014, Joseph E. Lake, Jr.

Creative Commons License

This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

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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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