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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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[culture] Further notes on the social invisibility of illness and disability

image

Yesterday I flew across the country wearing a face mask. This is something I’ve done several times of late. The resulting interactions are fascinating.

I’ve written before about social invisibility and mobility. Being on a scooter makes me socially invisible in a way that as a white man I’d never really experienced before. It was something between amusing and annoying, though mostly annoying.

Carrying a cane creates a more sympathetic response. Unlike the scooter, where people seem to assume I have a serious cognitive deficit, the cane (mostly) elicits courtesy at doorways and in lines and direct interactions from people.

I think the difference between the two is height. Even with the cane, my face is in an adult male position with respect to others. On a scooter, I am below the line of sight of everyone except children and people of very small stature.

But the mask… The mask creeps people out. It will come as a surprise to no one who knows me that I make a lot of eye contact with other people, especially women. When I’m wearing the mask, I encounter avoidance behaviors on a massive scale, that I rarely if ever encounter without the mask. It’s as if I’ve become creepy stalker guy. Men avoid me, but in somewhat different ways, as if I am embarrassing to them.

In other words, a lot like being back in high school.

I assume there’s a fear, spoken or unspoken, that as I am wearing a mask, there’s a chance of catching something horrible from me. It’s a marker of illness, a banner of disease. It generates not so much social invisibility as borderline pariah status. The reality in my case is that I’m trying not to catch something from the people around me, but they have no way to know that.

So, in simple terms, this is my experience of how I’ve been perceived and treated:

Scooter: Invisible and cognitively compromised
Cane: Visible and even treated with respect
Face Mask: I am the Walking Dead and I will eat your brains

Ah well.


Photo © 2014, Joseph E. Lake, Jr.

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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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[cancer] Some details on my NIH schedule

I fly back to DC next Tuesday, and check into the NIH inpatient facility that evening.

Wednesday I’m getting a CT, a brain MRI and an abdominal MRI. I’ve asked for an Ativan to help me be still for two hours inside the MRI tube.

Thursday I’m getting my chest catheter put in.

Friday (3/7), the chemotherapy starts. It will be in two phases. The first phase will last 48 hours, with twice daily infusions of about two hours each. This phase will require me to be awoken and have my urine output monitored every two hours during that entire period. I have been told not to expect to get a lot of sleep those two days.

The second phase will last five days with twice daily infusions of an hour or so each. During that period, I will be allowed to go out on a pass if I want to lunch with family or friends, or just be out of the hospital.

The cellular infusion will occur on 3/14, and it’s a one-time event. The variable days after that are the number of times I can tolerate the thrice-daily infusion of the helper drugs intended to activate the TIL cells. Those occur at 7 am, 3 pm and 11 pm. Very few patients have lasted all five days, to maximum dosage.

I’ll then be in recovering until my immune system is sufficiently robust for me to be released. That can be as little as seven days, but that patients with a lot of chemotherapy history usually take longer. I pointed out to the nurse I was speaking with that I’d had 1,600 hours of IV chemotherapy over the past five years, which seemed to surprise them. They said, “That’s a lot.” Figure at least ten days for me, possibly two weeks.

I can have visitors whenever I’m willing to tolerate them, but while I’m neutropenic I won’t be allowed flowers in my room.

So there’s two points of variability in my stay length, but if I had to guess, I’d say three-and-a-half to four week inpatient experience.

Return followups will be on a monthly basis for at least the first two months.

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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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[links] Link salad pulls across to greet a fellow rolling stone

Sculptures That Are Literally Head-Expanding — This be some strange stuff.

The Science of Selfies: A Five-City ComparisonWhere do they smile the most? The least? Who poses most expressively? Then there’s always felfies. (Via David Goldman.)

Lonely Cows Are Slow Learners

Massive offshore wind farms’ unexpected benefit: Hurricane protection

Daytime Moon Meets Morning Star — Which somehow sounds like the title of a Cordwainer Smith story to me.

“I Don’t Think We Accept These,” Says TSA Agent, Peering at D.C. License — I once had a car rental counter clerk in Dallas, Texas decline to accept my Oregon driver’s license because she could only accept US IDs.

Michael Dunn Compares Himself To Rape Victim In Newly Released Calls From Jail — Not unlike George Zimmerman. Apparently middle aged men who kill unarmed black kids are society’s true victims. Their guns made them safer, then they were betrayed. (Via Slacktivist Fred Clark.)

Rand Paul Blocks Surgeon General Nominee For Saying Gun Violence Is A Public Health Threat — Because guns make us all safer, and any pantywaist who pretends otherwise doesn’t deserve to be heard. Just ask the 30,000 people killed every year by firearms, they’ll surely agree.

“Stand Your Ground” NationAmerica used to value the concept of retreat. Now we just shoot. The paranoid bullies with their guns are winning.

One-Third Of Millennials Who Left Their Religion Did It Because Of Anti-Gay Policies: Survey — I know from listening to American religious leaders that Jesus’ teachings on homosexuality are far more prominent and important in the New Testament than His teachings on ministering to the poor, or feeding the hungry, or hypocrisy, or love of self and neighbor. Just look how many verses are devoted to each of those topics, after all. He preached constantly on the gay menace. Wait, what?

There Are Two Christian Right Movies Called ‘Persecuted’ Coming Out This YearWe’ve written quite a bit about the Religious Right’s conviction that conservative Christians in the U.S. are facing religious persecution through things like gay rights and the expansion of contraception access. Well, in case we needed a confirmation that this is in fact the direction of the right-wing zeitgeist, it turns out that are several movies coming out this year about the supposed oppression of Christians in America. And two of them have the same title: “Persecuted.” (Via Slacktivist Fred Clark.)

Federal judge voids Texas’ gay marriage ban, though he delays order from taking effect immediately — Republican officials are of course appealing in their continued effort to restrict civil and human rights for Americans of whom they disapprove.

Fox’s Tucker Carlson: It’s “Fascism” For Businesses To Have To Treat Gay Customers EquallyCarlson’s attempts to distinguish between refusing to provide services related to a gay wedding and refusing to serve gay people in general ignore the substance of the bill. New York University constitutional law professor Kenji Yoshino has noted that the measure is broadly written enough that it would allow any individual or business owner to refuse services to any gay person as long as he or she contended that providing services would burden his or her religious beliefs. So I guess we’ll have to carry gay/straight cards, as well as religious IDs?

Hispanic Lawyers Pull Conference From Arizona Over Anti-Gay Bill — Just the first of a long and richly-deserved string of economic setbacks for one of the epicenters of Christianist bigotry in America.

Arizona Gov. Jan Brewer vetoes divisive bill seen as anti-gay — “Seen as” anti-gay? “Flatly intended to be” anti-gay is the simple truth. And I am amazed at this veto, given that the Religious Right never backs down on anything. Would have been nice if she’d vetoed the bill because it is profoundly unConstitutional and against everything American values stand for, rather than due to the economic backlash, but I guess morality is where you find it when you’re a Republican governor in a conservative state.

Dumb New Arizona Laws — Hah!

The Death Throes Of The Anti-Gay Movement — We should be so lucky.

Arizona Discrimination, Leviticus StyleHate can get complicated.

Let he who is without sin… — Hahahah.

It’s Official: White Folks in Red States are the Biggest Food Stamp ‘Moochers’ in the Country!

DOJ Still Ducking Scrutiny After Misleading Supreme Court on Surveillance

Dick Cheney Broke US Military, now blames Obama for Cuts — Oh, come on. It’s all Obama’s fault. You can’t blame Cheney for anything. The last Republican to bear any responsibility whatsoever for their destructive acts in office was Richard Nixon. Reagan’s teflon coat is still ubiquitous among GOP pols.

Why I left the GOPMy old Republican worldview was flawed because it was based upon a small and particularly rosy sliver of reality. To preserve that worldview, I had to believe that people had morally earned their “just” desserts, and I had to ignore those whining liberals who tried to point out that the world didn’t actually work that way. I think this shows why Republicans put so much effort into “creat[ing] our own reality,” into fostering distrust of liberals, experts, scientists, and academics, and why they won’t let a campaign “be dictated by fact-checkers” (as a Romney pollster put it). It explains why study after study shows — examples here, here, and here – that avid consumers of Republican-oriented media are more poorly informed than people who use other news sources or don’t bother to follow the news at all. Waking up to a fuller spectrum of reality has proved long and painful. (Via [info]shsilver.)

?otD: Do you remember Dick Tracy? Do you remember Shane?


2/27/2014
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 7.5 hours (fitful)
Body movement: 30 minutes
Weight: 233.2
Number of FEMA troops on my block unjustly vilifying Ted Nugent: 0
Currently reading: n/a (chemo brain)

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[links] Link salad drank up all the money, yes it drank up all the money

Cover Reveal for Jay Lake’s The Last Plane to Heaven

The Most Ridiculous Mashup Ever – SpongeMen SquareWatch — Totally depraved. (Via [info]willyumtx.)

WTF is that on her head?Vintage ads featuring women with inexplicable stuff on their heads.

Spend the Night in a Giant Anus — Because you can! (Thanks to @dratz.)

Girl Scout sells 117 boxes of cookies in two hours outside Marijuana clinic — I have a pretty firm policy of never linking to FOX News or any of its affiliates, because FOX, but this headline was too good pass up. (Via Lisa Costello.)

She wasn’t being rude — Just a story about a veterinarian, a woman and a dog. Very much worth the read.

80 women go topless in New York: photos by Jordan Matter (NSFW)

Christopher Ryan: Are we designed to be sexual omnivores? — A TED talk. My answer is duh, yes.

Finger Computer Reads Books Aloud

Extraterrestrial Dispersal VectorsIf human civilization is to extend itself beyond our planet, it will need to take with it the plants, animals and microorganisms that can sustain a living ecosystem.

Brain Scans Show Striking Similarities Between Dogs and Humans

Cities, Networks, and the Counterintuitive Nature of SuicideThe new science of cities shows that suicide may be a more complex social phenomenon than previously thought, say computational anthropologists. Me, I was fascinated to learn of Kleiber’s law while reading this piece. (Via David Goldman.)

The Dark Power of FraternitiesA yearlong investigation of Greek houses reveals their endemic, lurid, and sometimes tragic problems—and a sophisticated system for shifting the blame. This just in: water is wet. I graduated from the University of Texas at Austin in the mid-1980s, where criminal acts by fraternity members, up to and including rape, theft, vehicular assault, arson and several suspicious deaths, routinely went uninvestigated and unprosecuted because of the political influence of frat legacies who held power in all levels of local and state government. Boys will be boys, after all. There is nothing whatsoever surprising about this.

A Brief Meandering About the Polar Vortex — Which for some reason climate change denialists continue to insist against all evidence is a scare word made up by the liberal media. Of course, if they were willing to accept evidence, they wouldn’t be denialists.

A Great Freeze Over the Great LakesIce cover on North America’s Great Lakes reached 88 percent in mid-February 2014—levels not observed since 1994. The average maximum ice extent since 1973 is just over 50 percent. It has surpassed 80 percent just five times in four decades. The lowest average ice extent occurred in 2002, when only 9.5 percent of the lakes froze.

Clerics Issue Fatwa: Muslims Can’t Live On Mars — Uh, ok. Though in fairness, this is specifically about the proposed one-way trip being seen as a form of suicide. Which is still quite a stretch to my view. Is it suicide to emigrate somewhere?

Gay patient says Catholic chaplain refused him last rites — You will know that they are Christians by their love. (Via John Sapeinza.)

Kansas Christianists seek monopoly on worldly honors and emolumentsSlacktivist Fred Clark explains the wider context and profound anti-American shame of the currently-tabled Kansas bill legalizing Christian discrimination against the LGBT community. You know, the truly horrible bill that no one in the conservative blog, media and political world seems willing to comment on. My view of “good conservatives” is rapidly eroding.

Arizona Legislature approves controversial religion bill — Arizona joins Kansas in shaming itself, the nation, and Christians everywhere.

[GOP Senate Candidate] Bevin: Same-Sex Marriage Will Lead To Parent-Child Marriage — Because being conservative means never having to be anything but cracking batshit bugfuck insane. And people vote for this shit.

DeLay: Americans Have Forgotten That God Wrote The Constitution — Because being conservative means never having to be anything but cracking batshit bugfuck insane. And people vote for this shit.

“He Will Rule Them With An AR-15″Retired Lieutenant General Jerry Boykin believes when Jesus comes back, he’ll have an AR-15 assault rifle in hand. Every time I read about a prominent Christian like this, I get down on my knees and thank the Lord God Almighty that I am an atheist. This crap makes my skin crawl.

?otD: How’re you going to get around in this sleazy bedroom town if you don’t put yourself up for sale?


2/21/2014
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 5.0 hours (fitful)
Body movement: 10 minutes (feeling poorly)
Weight: 233.0
Number of FEMA troops on my block attacking religious liberty: 0
Currently reading: n/a

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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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[personal] I feel like William Hell

Guess what? Sitting bolt upright (in a non-reclining airline seat) for six hours yesterday, and staying up three hours past my bed time (thanks to the time zone boogie) has done absolutely nothing for my sense of well being.

I feel like I fell down the stairs or something. The pain knot in my rib has returned with a vengeance. The occasional shadow pain knot in my back is expressing itself vigorously. My surgery wounds sting and itch. Sleep last night was like playing Whac-a-Mole with the pain fairy.

So yeah. Laying low under a quilt in my fancy adjustable recliner with the massage pad and the heating pad, trying not to feel sorry for myself.

And may I say, “Ow.”

P.S. – Sorry for the whining. This is kind of overwhelming.

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[personal] Five things make a post, I think

Let’s see if I can count.

1) Dad, Lisa Costello and I are flying home this afternoon. This because NIH pushed back the start date of my immunotherapy by about three weeks from what we originally expected. I can’t really complain, as the reason for this is the genetic selection phase they added to the protocol in order to leverage my Whole Genome Sequencing data and optimize the TIL cell infusion, but it adds another layer of financial cost and logistical complexity to the whole business. Frankly, instead of waiting here to start treatment, we’d have gone home two weeks ago if we’d understood the schedule. Such is personalized medicine in this age of miracle and wonders.

2) I am increasingly interested in seeing the The Lego Movieimdb ]. This film seems to fall into the category I call “movies which are much better than they have to be.” A good example of this is 2012′s ParaNormanimdb ], which was an animated kids’ comedy about a zombie attack on a New England town. But it had a clever, well thought out script with an ending far more humane than one would ever expect from a zombie movie, which made watching ParaNorman a much more rewarding experience than one would ever expect from the film’s subject matter, genre or marketing. So perhaps with Lego. Maybe this week.

3) The persistent pain knot in my chest has faded a bit. I have recently started taking gabapentin for it. I’m not sure if the connection is causal, as gabapentin has a titration period before it becomes effective. In reading up on gabapentin, I discovered that it can be recreationally abused. Which amazed me. I guess people really will try anything.

4) I have been trying to compose a post about Kansas House Bill 2453, which is a profoundly senseless, cruel effort to enshrine wholesale persecution of gay and lesbian citizens into law, masquerading as a defense of religious freedom. I just can’t figure out what to say that doesn’t make me sound so shrill and angry that I can’t even stand to read it myself. This is the apotheosis of the Republican religious-conservative axis into Poe’s Law, in which their extremism has transcended even self-parody. I have only one question for the religious conservatives of Kansas: “Would you do as you would be done by?” Sadly, we already know the answer to that one.

5) After that number four, I don’t have the heart for a fifth. I guess I can’t count.

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