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[cancer|personal] My first day at NIH

Well, this has been a doozie. The flight yesterday was reasonable, and I set alarms to remind me to get up and walk every 30 minutes. This kept me from stiffening up. On arrival, after some delays on the tarmac, I was re-united with Lisa Costello. We went to dinner, then she brought me to the NIH hospital in Bethesda, MD.

I was late checking in, due to the travel schedule, and it took a while to get settled. Then around 10 pm they wanted a chest x-ray. Then an EKG. Then a urine sample. Then a blood sample or twelve. There was a small comedy of errors around trying to set a needle in my chest port. All in all, I did not go lights out until 12:30 am, which even by West Coast time is quite late for me. I slept very poorly, awakening around 5:20 to eat half a granola bar, as I’m NPO from 6 am on due to a forthcoming CT scan.

There’s been the usual cycle of doctors, nurses, dietitians and whatnot flowing through here this morning. The critical conversation was with Dr. Klemen. My white blood cell count is quite elevated, 15 on a scale where 10-11 is the top of the norms. My neutrophils are up as well. This is evidence of infection, which he believes is linked to my cough. Unfortunately, if we can’t get my white count down in the next day or so, I am at strong risk of washing out of the trial completely.

They simply cannot go in and flatline my immune system while I have an active infection. That could kill me. And the TIL cell growth is timed. I have to start that infusion within a pretty narrow window.

We’re hoping the white cell count is already dropping. They’ll be reviewing this morning’s CT for evidence of lung inflammation hopefully on the retreat. But as Dr. Klemen says, whatever I’m fighting, unless it’s already on its way out right now, we can’t suppress it fast enough to meet the deadlines.

So, yeah. Here we are, in March, on the journey that started last fall, and we may be looking at a wash out.

I cannot even begin to describe the bitterness I would feel at that disappointment.

We shall see what happens today and tomorrow.

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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] Field notes from Cancerland, another West Coast edition

Headed to the doctor yesterday, twice

Yesterday I saw both my primary care physician and my palliative care physician. I wanted to bring them up to date on our NIH adventures, and also seek help for this stupid persistent cough, as well as discuss my general fatigue and lassitude. They were both productive consultations. Amusingly, each doctor had a very different approach to the cough. My palliative care doctor was most concerned with symptom reduction, prescribing Tessalon Perles. My primary was most concerned with addressing the root cause, and ordered a chest x-ray and an Albuterol inhaler. We eventually determined that these medications played well together, and I’ve gotten permission from my NIH doctors to proceed with treatment.

Back to NIH on 3/4

I have my new schedule schedule in hand. I’m flying back to NIH on Tuesday, 3/4. I’ll check into the hospital that evening. Wednesday 3/5 I have a CT scan mid-morning, and two MRIs that evening. One for my brain, the other for abdomen. MRIs are a pain the neck, though not especially painful in an objective sense. Having two in a row is going to be a real treat. Thursday 3/6 I am having my central line put in, a dual-lumen catheter that I believe will have a left subclavian placement. I suspect that will be rather painful in an objective sense. Friday 3/7 I commence seven straight days of kamikaze chemotherapy. (I’ve been asked by my doctors to gain some weight before I come back, which given that I am already medically obese is a strong commentary on what they expect to happen during treatment.) Friday 3/14, I commence the TIL cell infusions. At that point, the schedule becomes unpredictable due to possible variables in my response both to the infusion and afterwards as I recover from being profoundly immunocompromised.

So game on.

Will I be too sick to resume treatment?

Anent the above items, one of the things I worry about is whether I will be too sick to resume treatment. I have felt terrible this last week and half, in some sense worse than I felt even in the immediately post-operative period. My palliative care doctor thinks it’s not unreasonable for me to expect to get better in the next two weeks before I return to NIH, but at this point in my disease progression, nothing is certain. All I know is that there will have been an enormous amount of time, trouble and money spent on not much outcome if I wash out at this next step.

I’m pretty sure that’s an emotional fear on my part rather than a reasonable clinical expectation. Nonetheless, it’s real and powerful.

On the plus side, I feel better this morning than I have in the better part of two weeks. So maybe progress is being made.

Weird ideas about living through my own death

Even now, as I feel my body winding down and my mind wandering further and further away, I still marvel at being alive. Sometimes an odd fantasy occurs to me. It’s actually a trope I’ve seen in science fiction now and again, a form of solipsism. In effect, sometime I wonder if I cannot experience my own death, or perhaps I’m already deep in the midst of the experience, while my mind continues to create a simulacrum of reality around me. Logically, I’d eventually be the last man on the empty Earth if this were somehow true.

I don’t think it’s an escapist fantasy on my part. I’m escaping nothing. More of a weird fillip of my literary brain. Like my occasional expectation of a deus ex machine sweeping in at the last moment and saving me from the grave. An odd twinge in my thinking, to say the least.

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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.

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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.

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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] 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.

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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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