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[cancer] Comparing pain cards just makes me want to go for my thankfully nonexistent guns

Yesterday, I read a blog post where someone was describing their struggle with depression in earnest, heartbreaking detail. Then they said something I found very strange. They described cancer as a “physically evident” disease, in contrast with depression, the very clear implication being that somehow people with cancer were better off compared to people with depression.

This irritated the hell out of me, and I spent some time trying to figure out why.

It certainly wasn’t personal. The writer wasn’t trying to put me down, or cancer patients in general. I think their point was that invisible illnesses are harder for other people to understand. Which makes sense as far as it goes. I’ve said the same thing about cancer, and cannot even begin to count the number of times I’ve been told, “But you don’t look sick,” or some close variation thereof.

Except suffering is not a contest. Suffering is not a race to the bottom. It’s not a competition to see who has the worst, most unspeakable affliction.

Not to mention, many people with cancer, and I suspect most people with metastatic cancer, struggle with crippling depression right alongside their disease. As is true of most chronic and fatal illnesses, I should think. Given that depression often accompanies cancer, the idea that people with cancer somehow have it better than people with depression is a ridiculous one on the face of it.

Also, for whatever it’s worth, as I said above, cancer is also largely invisible. I’ve been ill for six years as of next month, and for most of that time, unless I was in surgical recovery or deep in the throes of chemotherapy, you couldn’t tell it by looking at me. Even then, I mostly looked like a gaunt bald guy. I could just as easily have been a meth head as a cancer patient.

These days my disease visible, but not as cancer. I get mistaken for my father’s brother, my mother’s husband, my partner’s parent, my child’s grandparent. But what I look is old, not cancerous. To the casual eye I’m 49-going-on-60something, not 49-going-on-tumorous-wretch.

I appreciate that the blogger was writing from a place of deep personal pain. But what read like an expression of envy for visible disease such as cancer was very hard for me to interpret with good will. I’ve done the chronic clinical depression thing, from my childhood into my mid-twenties, complete with suicide gestures and hospitalization. I know that world intimately from the inside. Now I’m doing the terminal cancer thing, starting at age 43 and going through an awful downward slide that has carried on for years. I know that intimately world from the inside. They don’t compare, they’re both beyond awful. One is not luckier than the other.

Really, truly, it’s not a contest. Claiming that people with some other terrible disease are better off than you is a strange form of reverse privileging. Assuming that cancer patients don’t struggle with depression as deep and crippling as chronic clinical depression is simply thoughtless. I mean, I could just as easily say, “Hey, you depressed people, with proper treatment you can lead rich, full lives, but I won’t live out the year. You have it way better than me.” Which would be about the stupidest, most pig-ignorant thing I could say to my friends who struggle with depression.

Really, truly, cancer patients do not have it better than the depressed. We’re all struggling here. We’re all suffering here.

[links] Link salad wakes up alone

Jay Lake, NIH, and Local Visitors

The Sound of Philadelphia Fades Out

Voynich Manuscript partially decoded, text is not a hoax, scholar finds — (Via David Goldman.)

The Oscars Have Just Become NSFW. — Heh. (Via David Goldman.)

Martian Sunset

Watch This Fox News Host’s Heartfelt Apology To The Intersex Community — Color me shocked. I’ll be even more shocked if there isn’t either a firing or a hard walkback over this. FOX simply can’t have this kind of empathy and compassion on their airwaves, it utterly undermines their brand management and message consistency.

Legalizing vigilantism — The bullies with their guns are successfully dismantling civil society.

Filthy rich but secretly terrified: Inside the 1 percent’s sore-winner backlash Why are the super-rich whining so much? They rigged the game for themselves, but are terrified of being discovered. (Via Slacktivist Fred Clark.)

Why Republicans Don’t Want to Acknowledge the Falling DeficitThe steep decline of the deficit is not something Republicans really want to talk about, even though their austerity policies were largely responsible for it. If the public really understood how much the deficit has fallen, it would undermine the party’s excuse for opposing every single spending program, exposing the “cost to future generations” as a hyped-up hoax. Mmm, evidence-based thinking for the win, not.

?otD: Did you sleep the sleep of the just?


3/2/2014
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 10.0 hours (slightly fitful)
Body movement: 30 minutes
Weight: 233.6
Number of FEMA troops on my block unjustly vilifying Ted Nugent: 0
Currently reading: n/a (chemo brain)

[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.

[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.

[links] Link salad looks forward to hump day

Another excerpt from Jay Lake collab “Recontact” for #WIPpet Wednesday — My good buddy Ruth Nestvold is cleaning up some of our unfinished collaborative work for publication.

METAtropolis: Green Space Audiobook Review

Sarah Silverman and the Art of the Non-Dirty Joke — This is a good example of the creative process, very well explicated.

Toy Story: The True Identity of Andy’s Mom Makes The Movie More Epic — (Thanks to Lisa Costello.)

Google Glass-wearing woman posts video of alleged S.F. bar attack

How Humans Went From Being One Shade to Many

Provide coverage for Lung Cancer Screening with LDCT — Cancer activism, courtesy of Janet Freeman-Daily.

Cheaper Cancer Gene Tests, by the DropA single-molecule gene test requires much less DNA to identify cancer-causing mutations.

Chile’s stunning fossil whale graveyard explained

Scientists re-weigh the electron, get more precise mass

Water Found in Atmosphere of Nearby Alien Planet

Space Rock Smacks Moon, Creating Biggest Lunar Explosion Ever Seen — (Via David Goldman.)

The audacious rescue plan that might have saved space shuttle ColumbiaThe untold story of the rescue mission that could have been NASA’s finest hour.

A World Multiply Endangered: Horseman of the Four Apocalypses — About political fear and terror.

‘I Am Still Called by the God I Serve to Walk This Out’A conversation with Lucia McBath, mother of Jordan Davis. Ta-Nehisi Coates again.

Is Religion Secularizing? Trends in Opposition to Pornography — I’m not sure this has any great significance, but it is interesting.

Christian rocker pleads guilty to trying to hire hit man to kill wife — Ah, the superior morality of Biblical marriage. (Via Scrivener’s Error.)

Inside the Conservative Campaign to Launch “Jim Crow-Style” Bills Against Gay Americans“This seems to be a concerted Hail Mary campaign to carve out special rights for religious conservatives so that they don’t have to play by the same rules as everyone else does”

A License to DiscriminateThere are 17 states where it is legal for same-sex couples to marry, and there is no evidence that the accelerating progress toward equality has compromised anyone’s freedom to worship or hold religious beliefs. Unfortunately, that has not stopped religious and social conservatives from pressing lawmakers in various states to enact noxious measures to give businesses and individuals the broad right to deny services to same-sex couples in the name of protecting religious liberty.

Fox News blasts Arizona’s “Jim Crow laws for homosexuals” — Uh, really? They were certainly for it before they were against it. Let’s see if this holds up at all.

Senators on SB1062: “We made a mistake”A trio of Arizona state senators urged Gov. Jan Brewer to veto a controversial “religious freedom” bill on Monday, just days after all three cast votes in favor of the proposal that opponents say will legalize discrimination. These unAmerican conservative jerks don’t even have the balls to stand proudly for the same bigoted hate they were happy to vote in for relative anonymity a week ago? Poor widdle babies, facing consequences for their profoundly destructive actions. Such accountability rarely happens to conservatives, of course. I suppose this is progress, but it would have been a lot more progress not to embrace such a hideously immoral piece of GOP vote pandering in the first place.

Arizona Confronting Awkward Realization That Gay People Have Money, Buy Stuff Acknowledging that her vote for the anti-gay law might have been calamitous for the state’s economy, Ms. Foyler placed the blame for it squarely on the shoulders of one group: the gays themselves. “How was I supposed to know what gay people do with their money, etc., when I don’t personally know any gay people?” she asked. “I’m sorry, but it was up to the gays to tell us.” (Via Lisa Costello.)

Oops: GOP Bill Would Strip 1 Million Workers Of Health Coverage — I’m pretty sure that’s a feature, not a bug, as stripping lower income people of healthcare is an explicit and widely held Republican goal. See the widespread efforts at refusal or even rollback of Medicare expansion.

[Redacted in the Interest of National Security] — Ah, humor.

GOPer: Ranchers Should Shoot ‘Wetbacks’ Crossing Border IllegallyA Republican Senate candidate argued to The Dallas Morning News editorial board earlier this month that ranchers in Texas should be allowed to shoot “wetbacks” trying to cross the border illegally. Stay classy, conservative America. It’s what you do best.

?otD: Is this the middle of your week?


2/26/2014
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 10.0 hours (fitful)
Body movement: 30 minutes
Weight: 234.2
Number of FEMA troops on my block unjustly vilifying Ted Nugent: 0
Currently reading: n/a (chemo brain)

[cancer] Field notes from Cancerland, symptomological edition

Overall health

I continue to feel as if I dropped a few tiers in baseline health in about the past three weeks. My overall levels of energy, physical integrity and so forth simply aren’t what they used to be. I am listless, and activity tires me out quickly. This is to be expected as I continue through my terminal decline, but I dislike it intensely.

Post-operative issues

I have at most minor discomfort from the surgery sites, and even that is intermittent. But the pain stripe on my chest, below the pectoral muscle, continues unabated and deeply annoying. Beyond that, my breathing has not felt quite right since the surgery. Given that there are about two dozen tumors in my lungs, perhaps this is not surprising.

The cough

The cough, which didn’t emerge for more than week post-operatively, continues to bedevil me. It’s gotten a big bigger and deeper, and is definitely bronchial. I continue to not show any other signs of infection, there is no phlegm produced when I cough, I have no post-nasal drip. Just a cough. For which I am taking tesselon perles and using an albuterol inhaler, to no apparent effect. Twice in the past few days I’ve coughed so hard I’ve become nauseous, and barely avoided deep unpleasantness. Last night I coughed so hard I developed a very painful stitch in my right side, along the line of the open incision surgery scar from my last two liver resections. So, yeah, this sucks.

Sores

I am beginning to develop small sores which do not heal. Right now, one in my left armpit, one on my left hip. They’re sort of like infected pimples, except they don’t get any better. This is a minor annoyance in the grand scheme of things, but definitely an annoyance all the same.

Sleep

Sleep is elusive if I don’t medicate. If I do medicate, I sleep too much most of time. At this point, oversleeping is better than undersleeping, but it’s another bit of evidence for decline.
Oddly, my GI, usually the first of my bodily systems to grow unruly, is currently behaving. But this is the dying process. Little things going wrong, and big things creeping up.

[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.

[links] Link salad knows that everything is awesome when you’re part of the team

How my husband forgot sexWhen we were younger, he was the one who taught me to explore. Then he had cancer surgery — and came out a virgin. Sigh.

A Rainbow Pileus Cloud over Zimbabwe

Why Mount Hood’s next eruption will be like a big blob of toothpasteMixing of hot and cold magna can bring a volcanic eruption in as little as 60 days. Volcanic eruptions at Mount Hood occur when cold magma, stored like ‘peanut butter in a refrigerator,’ mixes with hot magma from deep within the Earth’s crust, say researchers. That would be Portland’s friendly neighborhood volcano.

Kitties teach scientists a thing or two about geneticsCats, the patron saints of the internet, are typically not thought of as being at the forefront of genetic research. Their lack of opposable thumbs really limits their ability to run a proper DNA sequence, after all.

Hole-y Phobia May Have Evolutionary Origins Images that induce trypophobia, the fear of holes, share visual features with images of certain venonmous animals, implying that the aversion has an evolutionary basis. Trypophobia?

After 400 years, mathematicians find a new class of shapes

“Don’t Buy Shirts in Herat”: the Lost World of the Hippie Trail — Oh, man, to have lived this.

Rethinking a Zero Tolerance Approach to “Female Genital Mutilation” — Wow am I having a hard time wrapping my head around this.

Drug site Silk Road wiped out by Bitcoin glitch

World’s Smartest Company: Illumina — These guys did my Whole Genome Sequencing.

Capital One says it can show up at cardholders’ homes, workplacesThe credit card company’s recent contract update includes terms that sound menacing and creepy. Not “sound menacing”. “Are menacing.” World’s creepiest company.

National clown shortage may be approaching, trade organizations fear — There’s always the GOP congressional delegation to draw from as deep bench. (Via [info]danjite.)

Who Believes that Astrology is Scientific? — A paper on the correlations between belief in astrology and political affiliation. Which, surprisingly, show liberals to be the bigger idiots. Just what this country needs: further validation of non-evidence-based thinking. (Via [info]ericjamesstone.)

Bill Nye Science Guy to Debate GOP Rep Gohmert on Gravity

Obama’s Tea Party Cousin Who’s Running for Senate Compared President to Hitler — Running on the Godwin ticket, I see.

The evolutionary puzzle of homosexuality — Fascinating.

May a Man Marry a Man? A Medieval Debate — The alleged logic of opposition to same-sex marriage hasn’t really changed since. (Via Slacktivist Fred Clark.)

Kansas Gets Their Hate OnBut don’t call it discrimination.

Noose tied on Ole Miss integration statueThe FBI on Tuesday was helping investigate who tied a noose around the neck of a University of Mississippi statue of James Meredith, who, in 1962, became the first black student to enroll in the then all-white Southern college. Stay classy, conservative America. It’s what you do best.

What Information Are Stun Guns Recording? — It’s sort of the equivalent of putting serial numbers on bullets. I wonder how long the reservoir of these tags lasts. (Via David Goldman.)

After background checks were scrapped in Missouri“This study provides compelling confirmation that weaknesses in firearm laws lead to deaths from gun violence,” Daniel Webster, director of the Johns Hopkins Center for Gun Policy and Research and the study’s lead author, said in a news release. “There is strong evidence to support the idea that the repeal of Missouri’s handgun purchaser licensing law contributed to dozens of additional murders in Missouri each year since the law was changed.” Moar guns, to make us all safer!!

VW workers may block southern U.S. deals if no unions: labor chief — I find this whole ongoing VW-in-Tennessee story a little weird.

One-Percent Jokes and Plutocrats in Drag: What I Saw When I Crashed a Wall Street Secret Society

America’s First President Was The Tea Party’s Worst Nightmare — But, but, tricorn hats!

Remember that thing called the Unitary Executive Theory, Republicans? Obviously not.

UK Court: David Miranda Detention Legal Under Terrorism Law — A proud day for civil liberties.

?otD: Are you living the dream?


2/19/2014
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 10.0 hours (solid)
Body movement: n/a (feeling poorly)
Weight: n/a (feeling poorly)
Number of FEMA troops attacking religious liberty: 0
Currently reading: n/a

[personal] I feel like Bill Heck

And believe me, Bill Heck is a distinct improvement over William Hell.

I laid very low yesterday, and I took the heavy artillery to help me sleep long and hard last night. Today the pain knot in my chest is complaining, but as of late, that’s normal. I still feel an overwhelming fatigue. Most of the rest of yesterday’s somatic complainants have quieted down.

Clearly I have no resilience these days. Not sure if that’s the long-term new normal, or part of the surgical recovery arc. Given the continuing advance of my dozens of metastatic tumors, I tend to assume this is another permanent loss of functionality as I continue in my terminal decline.

At any rate, in relative terms, I do feel better. In absolute terms, meh.

[links] Link salad checks into the Tabard in Southwark

35 Nerdy Cards Against Humanity Cards To Add To Your Deck

Digital Steamboat Willie — Uh…

Lincoln Blimp: 1930

A Map of the World’s Most Dangerous Countries for Drivers — The headline is misleading (the headline editor clearly did not read the whole piece), as this article draws an inverse correlation about cause of death around the world that is fascinating.

The Shrink & The Sage: Should we fear the worst?‘People cope with what they consider disasters much more positively than they would have guessed’

Tracing Ancestry, Researchers Produce a Genetic Atlas of Human Mixing Events

Intel’s Sharp-Eyed Social Scientist

For Mice, and Maybe Men, Pain Is Gone in a FlashResearchers find a way to turn pain on, and off, with a beam of light.

Glass, DarklyFor its wearable computer to be accepted, Google must convince people that the device isn’t creepy.

Promoting Public Policy Programs…with Puppets

Woman Arrested Nine Years After Failing to Return Rented Video

Kerry Blasts Climate Denialists, equates Climate Change with Terrorism, WMDs

This is what actual ‘religious liberty’ looks like

The Changing Face of Christian PoliticsAmong 16- to 29-year-old non-Christians, Christians were viewed as “anti-gay” (91 percent), judgmental (87 percent), hypocritical (85 percent), sheltered (78 percent) and—surprise—”too political” (75 percent). In 2010, respected academics David Campbell and Robert Putnam’s landmark book, American Grace, concluded that partisan politics was directly to blame for the rise of religiously unaffiliated Americans. Interesting read. Unfortunately, this article is far, far too kind to the Christian right and measured by its words and deeds, such as the recent Kansas anti-gay bill.

Breaking the DichotomyIn the wake of Prop 8 and the LDS church’s continued political involvement opposing same-sex marriage in several states in the US, a lot of members find themselves in a very difficult position. It’s more than just embarrassment, and it’s a question that a lot of people outside the church have asked with varying degrees of reasonableness. If you disagree with what they’re doing so much, why do you keep supporting them? A similar question comes, regrettably, both from outside and inside. Why don’t you just leave? A reflection from Feminist Mormon Housewives on a question I’ve often (as an outsider, obviously) wondered about.

Black Boy InterruptedOn the unfinished life of Jordan Davis. Ta-Nehisi Coates is bitterly brilliant, again.

George Zimmerman Refuses to Say Whether He Regrets Killing Trayvon Martin“Certainly, I think about that night and I think my life would be tremendously easier if I stayed home.” You mean like the 911 operator told you to? I doubt Zimmerman ever reflects how much easier, and longer, Trayvon Martin’s life would have been if Zimmerman had stayed home. Ladies and and gentlemen, your gun culture, where the power to conduct your summary execution can be tightly gripped in anyone‘s hands.

I’m anti-carThere are people who really love their cars too but don’t think that having to pay to have a license plate means that the government has become a fascist dictatorship determined to take their vehicles away from them — yet otherwise intelligent people will use that exact same argument when talking about guns.

GOP operative asks judge to delay trial until after electionsClaiming key GOP campaign strategies could be “exposed” before this year’s gubernatorial and legislative races, a Queens Republican operative wants his federal corruption trial delayed until after November’s elections. Wow, does that take some stones. What do good, honest, moral conservatives have to fear from the light of justice anyway? Look, over there, ACORN! Well, never mind. I made the mistake of expecting better of non-conservatives, but the Democrat involved has also asked for a delay for the same reasons.

Congressional Republicans focused on calming their divided ranks“We don’t have 218 votes in the House for the big issues, so what else are we going to do?” said Rep. Devin Nunes (R-Calif.), an ally of House Speaker John A. Boehner. “We can do a few things on immigration and work on our principles, but in terms of real legislating, we’re unable to get in a good negotiating position.” Poor GOP. Trapped in the majority, stuck with controlling the House, and unable to advance their agenda. Why would anyone vote for a political party this utterly dysfunctional?

?otD: Will you tell your tale?


2/18/2014
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 9.25 hours (solid)
Body movement: n/a (feeling poorly)
Weight: n/a (feeling poorly)
Number of FEMA troops attacking religious liberty: 0
Currently reading: n/a