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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.

[links] Link salad wakes up in a strange place

Another game of putting things aside, as if we’ll come back to them sometimeLisa Costello on living with my death.

Small fortune: Why everyone should give short stories a chance — (Via [info]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 opinionAccording 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 [info]shsilver.)

Obama’s Critics Should Put Up or Shut UpDo 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?


3/5/2014
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)

[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.

[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.

Thank you.

[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] 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.

[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.

[cancer] Slipping over the horizon

Lately, I feel as if I’m dissolving.

This morning, I recalled the plot of a story, and couldn’t remember if I’d written it, or read it as someone else’s work. (I still don’t know, as of this writing.) That’s literally the first time I’ve ever done that. I used to be able to recount the title and plot of every story I’d ever published, hundreds, but it’s been a long time since I had even that much grasp on my own memory. But this type of confusion? This was new.

Also this morning, my liver pain is back. I suspect it’s never left me, but has been subsumed into the surgical recovery process and that nagging knot of pain in my rib. I suppose in a sense this is a good thing, as it means that the other pains have receded enough for me to notice the difference.

This entire week, I have been off. Substantially fatigued, easily further tired by much activity, mentally vague much of the time. Uncharacteristically petty of emotion and quick of temper, though I’ve mostly managed to keep my trap shut at those little surges. There’s the small, persistent cough. There’s the rib pain. There’s the declining appetite. Both Lisa Costello and Dad have been worried about me.

Every bit of this is reasonably consistent with the intersection of post-operative recovery and me entering my terminal decline with the advance of my cancer. Like I said, I feel as if I’m dissolving. Bits of me are growing weaker and thinner, or vanishing altogether.

This is what dying means from the inside. Not some big, dramatic personal Götterdämmerung. Not some noble, long-suffering, Hallmark Movie of the Week struggle complete with sappy occasional music to cue the tears. Just a slow dissolution, slipping over the horizon. A quietly frustrating fade to black.

I dissolve, wishing it were otherwise.

[cancer] Slow day yesterday, always worrying

I had a lot of minor issues yesterday. In sum, I was lethargic, exhausted and very hard put to tolerate much physical or mental activity. Also, the pain in my chest was subjectively worse than previous days.

Both Lisa Costello and I worry about me sliding. The slide is inevitable, but we still worry. Not sure if yesterday was me still recovering from Monday’s expedition into DC, or post-operative recovery making its demands known more loudly, or terminal decline sneaking up on me, or the previous night’s bad sleep thanks to my shouty hotel neighbors. Likely all four.

It’s a hell of a life where every sleepy day quite legitimately feels like a harbinger of death.

Right now, there’s a foot of snow on the ground from overnight snowfall and at least twelve hours more snow expected. So we’re low and slow this day as well.

[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.