[personal] Blog content for a while…
For obvious reasons, blog content for a while will be almost all cancer, all the time, other than daily Link Salad and Moment of Zen posts. There may be some irregular or omitted days, depending on where I am in the treatment cycle.
I have some political and cultural posts I’d like to make, but as I’m under a lot of medical stress, I don’t trust myself to be as nuanced and focused as I need to be in those cases. If I’m going to be inflammatory, I’d strongly prefer to do so on purpose. Even more to the point, I don’t want to accidentally stir shit because I’m too goofy to really know what I’m doing.
So unless there’s a stretch of unusually clear-mindedness ahead, pretty much going to be focused on the NIH trial experience here for some time to come.
Posted: 5:55 am Fri March 07 2014 | Comments(7) |
[cancer] NIH Day Three
Yesterday involved some more will-we-or-won’t-we rollercoastering over my entry into the protocol. However, my WBC levels were down from 15 to 12, where 11 is the normal max, so everyone relaxed a lot. I also learned that the new imaging shows about 20% growth in my tumors on average, but no new organ systems were involved. This means nothing has happened which would interfere with the protocol from that perspective, also a good thing.
The main event was having my chest catheter put in by Interventional Radiology. I was on hurry-up-and-wait again yesterday morning, including an NPO order from midnight forward. They finally took me down around 11:45 for my procedure. The team there was very kind and supportive, and Dr. L— apologized for the fast. He was a kind, funny man who took a lot of care in consenting me to make sure I understood exactly what they were doing.
Dr. L— and his team did the procedure with me conscious but sedated on a mixture of Fentanyl and Versed. Normally, Versed gives me retrograde amnesia, but not in this case. And in truth, I’d have rather been unconscious. Hearing the surgical chatter is an interesting if mildly unnerving experience from the patient perspective, and the while time my right shoulder, which was uninvolved in the procedure, kept stiffening up. I guess that gave me a focus.
They went in to my neck and inserted a series of spacers, then went into through my left chest and pushed the catheter up to where the spaces were and threaded it into my left jugular vein. Plenty of local anaesthetic was used, but I still had lots and lots of odd sensations. Probably not a top five weird medical experience in my book, but definitely a top ten.
Afterwards, I was left with a sore neck.
This morning I have been started on IV fluids. Apparently a national shortage of medical-grade saline is affecting even small-scale treatment decisions, so there was some discussion of precisely when to start me. Pending a confirmatory report from the TIL cell lab, I’ll start the first chemo series at five o’clock this afternoon. That is an hour of chemo, followed by twenty-three hours of continuing hydration and very close observation (ie, waking me up every two hours to pee and carefully monitoring my fluid intake and output). This will go on for forty-eight hours. Sunday evening they switch me to the other chemo agent for a five-day run.
So, yay? We are almost at the beginning of the business end of this protocol.
Posted: 5:52 am Fri March 07 2014 | Comments(11) |
[cancer|personal] NIH Day Two
Yesterday consisted of a great deal of hurry-up-and-wait. Sometimes NIH remembers that it is a hospital. After the initial discussion about me perhaps washing out of the study protocol due to my elevated white blood cell counts, the doctors temporized a bit. If we could find a clear source of infection, I would wash out. My CT scan showed no evidence of pneumonia. If my WBC trended down, I might not wash out. That was re-tested again the this morning, results as yet unknown. If last night’s MRI shows any sign of infection, I might wash out. Results unknown. Sometimes large tumors release signalling hormones that cause elevated WBC, so I might not wash out.
I still don’t know. The doctors’ language got easier and more supportive every time they popped in as the day went by, but we’re a long way from closure in either event. Or not. This could change at any moment. The issue, of course, is if I do have a real infection somewhere, flat-lining my immune system with chemo starting tomorrow will kill me. This is a suboptimal outcome.
The problem is that if I miss this window for chemo and TIL cell infusion, I miss it all. The cells grow and senesce. We’ve got about two days of wriggle room on this one. Otherwise the washout is total, not “come back in two weeks and try again.”
The MRI last night was pretty tough. They wanted both a brain scan and an abdominal scan, but for some reason not a lung scan. I spent about 140 minutes in the tube. I’ve lain inside a coffin, and trust me, they’re much roomier than an MRI tube. Somewhere in the last third of the procedure I was ready to climb out screaming and run away. Next time they want a double MRI, I will insist on either separate sessions for each imaging order, or sedation. (And yes, I was already tanked up on Lorazepam for yesterday’s festivities.)
Today I am supposed to be having the dual-lumen Hickman catheter implanted in my left chest. No one can tell me when, so I am NPO from midnight until sometime after whenever Interventional Radiology bestirs itself in my direction. Could be outside my door right now, could be three o’clock this afternoon. I will be one thirsty, grouchy bear if this takes all day. The catheter itself is a bit of a commitment, so I suppose it’s possibly my immunotherapy docs will have that procedure postponed until we’ve come to a resolution on the WBC issue.
This is making me very, very crazy. I’ve invested the time since late December in this protocol. To lose it now…
Posted: 5:04 am Thu March 06 2014 | Comments(5) |
[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.
Posted: 7:31 am Wed March 05 2014 | Comments(7) |
[culture] Further notes on the social invisibility of illness and disability
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
Photo © 2014, Joseph E. Lake, Jr.
This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.
Posted: 7:22 am Wed March 05 2014 | Comments(11) |
[links] Link salad wakes up in a strange place
Another game of putting things aside, as if we’ll come back to them sometime — Lisa Costello on living with my death.
Small fortune: Why everyone should give short stories a chance — (Via willyumtx.)
How the Grinch Stole Grammar!
14 World-Changing Data Visualizations, From the Last 4 Centuries — Which reminds me of Charles Minard’s flow map of Napoleon’s march on Moscow. (Via David Goldman.)
When Trilobites Ruled the World — (Via Dad.)
A Successor to Sagan Reboots ‘Cosmos’ — This is cool. An incredible shame that it’s on FOX, the conservative propaganda organ. (Via Dad.)
Christians, authors debate role of submissive wife — It so very hard for me to interpret this as anything but creepy as hell.
Gay marriage opponents don’t know they’re on the wrong side of public opinion — According to a new survey by the Public Religion Research Institute, only 41 percent of Americans oppose allowing same-sex couples to marry. But that same 41 percent has a highly skewed perception of where the rest of the country stands: nearly two-thirds of same-sex marriage opponents erroneously think most Americans agree with them. I’m pretty sure this is true of most conservative positions: unpopular, often deeply, when polled among the population as a whole (i.e., including people other than likely Republican voters), but not understood as such by conservatives, who imagine themselves to be the brave vanguards of a still-silent majority.
GOP’s “inane” war on science: Plasma physicist congressman takes on the denialists — Holt, a plasma physicist and eight-term congressman (and five-time “Jeopardy!” champion), last month announced he’ll leave the House in January. For “future generations, who will pay an even greater price than the current generation from climate change,” Holt told Salon late last week, “it will be hard to explain to them the inaction of America and the U.S. Congress.” (Via shsilver.)
Obama’s Critics Should Put Up or Shut Up — Do you remember when President Bush’s political adversaries starting ragging on him during the first days after 9/11? Or during the first days of the invasion of Iraq? Me neither. Whatever you think of the holder of the presidential office, if you are actually concerned about the nation’s welfare you don’t go on TV mocking him and saying he’s weak.
?otD: Can you sleep alone? Can you sleep with somebody else?
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 6.0 hours (very fitful)
Body movement: 0 minutes (hall walking to come)
Weight: n/a (no scale here)
Number of FEMA troops on my block teaching wives how to be submissive: 0
Currently reading: n/a (chemo brain)
Posted: 7:08 am Wed March 05 2014 | Comments(0) |
[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 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.
Posted: 6:52 am Tue March 04 2014 | Comments(5) |
[cancer] Dead man walking, wearing a corpse
Saturday I was out and about with my offspring. She wanted some Dad time, and since I’m leaving town tomorrow for a month of grueling last ditch experimental genetically-driven immunotherapy, I said yes.
I drove for about two hours in the course of our outing. Around town, not nothing overwhelming. We popped by my Mom’s house briefly, we got lunch at a Burgerville drive-through, we talked about life and graffiti and urban infrastructure.
When we got home, I hurt. I hurt for the rest of the day. I hurt overnight, sleeping ten hours as my body tried to catch up. I hurt the next day, canceling light duty social plans to concentrate on healing. I still hurt this morning, on Monday.
But then I hurt all the time these days. My old liver surgery scars are stretched by the incessant coughing. Every two or three days I cough myself into wrenching nausea. My new surgery scars ache and sting. That band of pain below my right pectoral nags. I don’t breathe very well any more. Everything wears me out.
The idiot lights are winking on one by one on the dashboard of my body. I am failing. I am a dead man walking, wearing a corpse that hasn’t yet caught up with the not-so-exaggerated reports of its demise.
I will not give up. I never do. I reserve the right to lay down my arms near the very end, when all the battles all over, but the war is long since lost. For now, though, I go to NIH, I seek a treatment that will be at best brutal. It may extend my life, it may diminish my days. But this is my path.
And I am so tired. So very tired. Not hopeless, exactly, though as I read over these words they echo of hopelessness. But hope is something I abandoned long ago when I passed through cancer’s gates of horn and ivory. These words are the breath of someone who has already lived too long, worn out both his welcome and his pity, and continues because there is no other course but forward into the shadows.
I love whom I love, and I am loved by more people than I will ever know. Love keeps me going through the pain and loss. This is not a desert, just a tired landscape overwritten by years of struggle and the footprints of a thousand people who helped carry me.
Posted: 8:42 am Mon March 03 2014 | Comments(16) |
[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.
Posted: 8:39 am Mon March 03 2014 | Comments(5) |
[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.)
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 Deficit — The 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?
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 10.0 hours (slightly fitful)
Body movement: 30 minutes
Number of FEMA troops on my block unjustly vilifying Ted Nugent: 0
Currently reading: n/a (chemo brain)
Posted: 9:08 am Sun March 02 2014 | Comments(0) |
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