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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.

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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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[cancer] The cough is finally diminishing

The cough, while still present, is finally diminishing. This makes an immense difference in my quality of life, minute-to-minute and day-to-day.

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[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.

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[cancer] Field notes from Cancerland, another West Coast edition

Headed to the doctor yesterday, twice

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

Back to NIH on 3/4

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

So game on.

Will I be too sick to resume treatment?

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

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

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

Weird ideas about living through my own death

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

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

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[cancer] 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.

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[cancer|travel] An unexpected brief trip home

We received another email from my NIH doctors yesterday afternoon. Due to the extra time required for the genetic selection process, they will not be starting the first steps of my immunotherapy treatment until March 7th. Given that we’d originally expected me to be going back into the hospital about now, that’s a significant gap. So we’re going home.

As you might imagine, this led to something of a logistical fire drill yesterday afternoon and evening. We got everything sorted out, but it took a bunch of time and energy.

Had we understood this timing back when I had the surgery, we’d have gone home a week or two ago. While the extra time and expense spent being here in Maryland is more than a bit frustrating in retrospect, in the end it’s all good. Genetically personalized immunotherapy isn’t exactly a standardized process, seeing as how I am literally the first person in the world to be treated this way.

I’ll probably be coming back around March 5th, as I assume they will want to redo many of my lab tests, CT imaging, and so forth, before commencing treatment. Plus I need to have the subclavian catheter inserted. So Dad, Lisa Costello and I are flying home tomorrow. I’ll spend a couple of weeks sleeping in my own bed and hanging out with [info]the_child. I will also be At Home to family and friends in Portland (or from elsewhere if visiting or passing through), so I can renew some of my social connections.

Unexpected, all the same.

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[cancer] In which progress is made at NIH

I got a note from one of my NIH doctors yesterday which read, in part:

We have very exciting news to share: we were successfully able to screen your TIL fragments for reactivity against your tumor mutations and found clear “stand outs” which have a high level of reactivity against a subset of the mutations which we are selecting to expand to large numbers for your treatment. We are working now with the cell production facility to get you scheduled for the actual treatment phase ASAP. Your treatment is a priority and I hope we can have a finalized schedule in the very near future.

This is good news, and significant progress. Last year’s crowd-funded Whole Genome Sequencing gave them an effective tool for filtering the TIL cells harvested from my non-therapeutically resected lung tumors. This will improve the odds of success in my forthcoming immunotherapy process.

All we need now is that schedule…

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[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.

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[cancer|culture] Employment and me and the American obsession with work

Interesting article here about American’s relationship to work, specifically in light of some of the recent Republican bitching about Obamacare and jobs. As if introducing broader economic choices and more personal freedom by eliminating healthcare-driven job lock and marriage lock were somehow a bad thing.

The article says:

You heard echoes of America’s Puritan roots in Republicans’ latest argument against Obamacare: Work is a irreducible part of who we are and anything that shifts incentives away from work is a step toward indolence and sloth. We might be a more secular nation in the 21st century, but we still generally establish our self-identity through our occupation, experts say. The Protestant work ethic prevails.

Speaking as someone who is no longer working, but living off SSDI and private disability insurance, um, yeah. This issue bothers me a lot. My basic cultural wiring is just as embedded in the poisonous cesspool of Calvinism as the rest of America. I was raised with a Southern-tinged Protestant tilt. I know in my bones that worldly success means God’s favor, that illness and poverty mean that one has failed morally. This is how our culture behaves, to our everlasting shame.

So now, being on disability as I am, I’m no longer working in the usual sense of the term. Being a cancer patient is certainly a full time job, but it doesn’t embrace what conservatives call “the dignity of work”. (Which, by the way, is something I think they do get right — there is a dignity in purposeful work. Where I diverge from my conservative friends is in the definitions and implications inherent in that phrase. The core idea I don’t have a problem with.) I can’t work, even if I wanted to. Yesterday’s lunchtime trip into DC underscored how shallow my physical and mental reserves really are. That’s why I’m on disability.

We as a society harshly judge people who don’t work (excepting of course the idle rich). Who are perceived to lack ambition or ability. Where does that leave me? I worked hard all my life, did pretty well financially and professionally, and now drowning in the seas of cancer at the twilight of my days, am sidelined.

Sometimes that bothers me intensely. I miss both the job I had — I enjoyed my profession and my workplace and my coworkers — and I miss being that kind of busy. I miss writing for part of my living. I miss being focused and economically productive. I am not poor, even now, but I am certainly ill. About as ill as one can be without actually being dead.

It’s not a sense of failure. More like something at the intersection of shame, regret and frustration. I wish I could retool my mental landscape and see this time of being on disability benefits as my version of honorable retirement, or as my compensation for the job of being a cancer patient and standing witness to the disease for myself and others. Maybe I’ll succeed in that yet. But so far there’s too much of that American Calvinism in me to just let go.

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