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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.

[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.

[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…

[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|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.

[cancer] A bit more detail on my oncological hypochondria

I’ve mentioned numerous times enjoying what I sarcastically refer to as “oncological hypochondria”. Meaning, experiencing every somatic change or irregularity in my body as if it were a sign of impending trouble on the cancer front.

This is less of a joke than it used to be, given that I am probably entering my terminal decline right now. It used to be that when I had a problem, I wondered if that meant the cancer was returning. Not so much any more. The disease is back with a pervasive, terminal vengeance. Now when I have a problem, I wonder if that means a step in my irreversible slide toward death.

Specific things that are going on right now:

Oversleeping — I am sleeping more than I used to. That’s normal for any post-operative patient, and I am recently post-operative. It’s also one of the specific markers of terminal decline, at least given my most likely failure modes. I cannot judge whether the oversleeping is one, the other or both.

Reduced energy — For example, Lisa Costello and I yesterday took the Metro from Rockville to DC to have lunch with her Day Jobbe workgroup, which is based in downtown DC. Two forty-five minute Metro rides and twenty minutes of walking back and forth in the cold absolutely wiped me out physically and mentally for the rest of the day. As with the oversleeping, this could be a post-operative issue, or a harbinger of terminal decline, or both.

Kennel cough — I’ve got a very odd little cough these days. It’s not connected to a sore throat, post-nasal drip, or any sign of impending infection. I just cough, a tiny, little apologetic thing like a baby’s cough, that often comes in pairs. My best guess is that I am producing more saliva than I used to, and it’s draining into the back of my throat. What the hell does this mean? I don’t know. Cue more worry.

Chest pain — Ok, let’s get real. I had a right thoracotomy less than three weeks ago. Of course I have chest pain. But the pain has settled in a spot below and to the left of my right pectoral. Which was in no way directly affected by the surgery. Likely this is a knot of referred pain, perhaps the trunk end of the nerve on that rib, but it’s persistent and annoying, and seems to be happily outlasting the receding pain from the surgery site itself. (Sites, actually, since I had VATS surgery, meaning there are five small but distinct entry and exit wounds.) What does that mean?

Appetite — My appetite continues irregular. I eat a very modest breakfast, tend to eat a full lunch or close to it, and eat a very modest dinner. I’m pretty sure my calorie intake is below target now, though we don’t have a scale in the hotel, so I can’t track any weight swings, which for me based on experience are known to be a pretty good proxy for calorie intake. Like extended sleep hours and daytime lassitude, reduced appetite and weight loss are symptoms I’ve been told to expect in the process of terminal decline.

In a sense, this is all dithering. I’m dying. That is a thing which is true. What we’re up to here at NIH might buy me some time, maybe months, maybe a year, though more likely not. It won’t cure me. My body is under assault from within, and at some point this endless stubbornness of mine that has kept me going will collapse under that assault. Still, I watch the signs, wondering which twinges are just middle age and hard use, and which twinges are glaring idiot lights on my personal dashboard of death.

Weirdly, some days I just want to get on with the business of it. So, weirdly, some days I almost hope for the worst.

[cancer] Some science neepery on what we’re trying to do here at NIH

A week or two ago, my friend Chris Johnson asked me a question via email.

Did the NIH researchers describe how the hell they managed to count the number of distinct mutations among the cancer cells? I was amazed by that. I was at least as amazed by their ability to customize your T cells for each of those strains. How the hell do they do that stuff? In my ignorance, I’d’ve sworn the technology to do that either didn’t exist, or, at least, that it would be so slow and difficult that it couldn’t be employed in practice. I love being wrong, and finding the world is more amazing than I suspected, but if you’re able to shed any light on those processes in future postings, I’m all eyes.

My not-necessarily-scientifically accurate answer was sufficiently interesting to me that I’m reposting it here, as it may be of interest to some of you reading. If you’re a clinician or a researcher who can clear up some of my misconceptions, please feel free to comment.

The mutation count comes from comparing the Whole Genome Sequencing (WGS) data on my tumor tissue to the WGS data on my germline tissue. In and of itself, that’s not terribly hard if you have the right data in hand in the first place, which we’ve possessed since last spring thanks to the crowd-funded process I went through then.

The part that is terribly hard is selecting for the appropriate TIL cells. They’re sensitizing my B cells (recovered through apheresis) to the known mutations through a process which I cannot even begin to describe. I’m not sure if they’re culturing all 100+ known mutations, or just a subset which is likely to be more key.

They will then have separate B cell cultures where each of those mutations is active, which would normally be detected through the presence of a specific protein. (In a very fundamental sense, that’s what any mutation does, it alters the production of some specific protein, which in turn can alter enzymes, cell structures, etc.)

At that point, they introduce my TIL cells, cultured from the tumor harvest, into each B cell culture, and note which B cell cultures stimulate the most TIL cell activity. They then retrieve the TIL cells from that culture and set them aside for the expansion growth, which is the 10^7 or 10^8 multiplication of TIL cells required before infusing them back into me.

The theory being that the subset of my own TIL cells used for the expansion growth and subsequent infusion will be the ones most likely to seek out tissue in my body harboring the tested-for mutations. That is to say, mutations found only in my tumor tissues.

This makes a couple of assumptions. One, that all my tumor tissues carry the same mutations. Since I have had at least five or six generations of tumors in my body, each of which may have experienced its own genetic drift through further mutation, this is not necessarily true, though it is likely enough. Generation 1 was the original presentation of my primary cancer, resected in 2008. Generation 2 was my initial metastatic presentation, resected in 2009. Et cetera, until the crop of tumors I have now which represent Generations 5/6 or 6/7, depending on how you count.

Two, this process assumes that those mutations can be found nowhere else in my body. The germline tissue which was typed was from my liver. However, there is increasing evidence suggesting that human DNA can be far more chimeric than we normally understand it to be. So, for example, what if my colon tissue, where the cancer originated, harbors some of those same mutations, even though the liver tissue from which my WGS assay was done did not? Would the sensitized TIL cells attack otherwise healthy colon tissue in that case, creating a permanent gastrointestinal autoimmune disorder for me?

Issues such as those I mention in the assumptions above are why this is a highly experimental procedure, rather than normal clinical medicine. That and the fact that the hard cost of this process is astronomical, and can probably not be duplicated at more than a handful of other institutions in the world, if that. On a purely procedural basis, much of what’s being done to me could be handled by any competent institutional oncology department, but the whole business with the genetic selection and managing the TIL cell growth requires a level of expertise and equipment that is incredibly expensive and vanishingly rare. Also, the holistic and theoretical basis for managing the treatment and evaluating the outcomes requires a similar level of expertise.

[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.

[personal] Continuing to lay low

I had been thinking about driving down to Wallops Island today to visit NASA’s Wallops Flight Facility, as well as the co-located Mid-Atlantic Regional Spaceport, because, hey, MARS. But my right chest still aches enough to be distracting as well as serving as an impediment to my full range of motion. This probably means I should not be operating a motor vehicle.

Plus it’s cold and gloomy out there.

Tomorrow, if I feel up to it, I shall go. We’re pulling up stakes Saturday morning and heading back to Rockville to be ready for the next round of healthcare festivities at NIH, so if I don’t make it tomorrow, I shan’t make it at all.

In any event, I am laying low today. My ambitions have been scaled back to eating meals and maybe a walk on the beach.

[dreams] Walking into ignominy, and fish cookies

Long, complicated dream about my own impending death last night. In the manner of dreams, I have lost much of it already after waking, but the last bit remains.

I was preparing to leave this world, but for some reason I was dressed in motorcycle armor, and my death was a quest from which I would not return. I was wandering around trying to say good-bye to people I cared about, having just escaped some now-lost-to-memory threat earlier in the dream, when I realized that @jackwilliambell was following me with a pistol in his hand.

Confronting Jack, I told him to either go ahead and shoot me, or help me out. He decided to help me.

We were trying to get into the campus of a high school endowed by the late Dave Thomas, founder of Wendy’s. I had a bag of fish-shaped cookies I wanted to give to someone, anyone, I knew to pass on as my farewell offering to my circle of friends. But Jack and I couldn’t find our way to the front gates. Eventually we climbed some fences before trying to blend in with the student population.

I finally found @MartiMcKenna wandering around campus with some large, hunky young dude she was totally in to. I could barely get her to pay attention to me, but I finally got here to accept my fish cookies. Which her hunky dude promptly started eating.

Somewhere in there I woke up.

As usual, I don’t have much problem deconstructing my dreams. I went to boarding school when I was a kid. Dave Thomas supported adoption causes, and [info]the_child is adopted. Marti and Jack are both beloved friends of long standing associated with the writing community. I am in fact dying. Not so sure about the motorcycle armor or the fish cookies, come to think of it, other than some obvious Christian imagery around Communion, which seems remarkably egotistic, even for me in the privacy of my own dreams.

But weird and sad and amusing all at the same time. As with much of the rest of my life.

[personal] The things I did yesterday

I slept in.

I watched the beach out of the windows of our hotel room.

I had the last stitches from my thoracic surgery removed at an urgent care facility here in Ocean City. (Ouch.) Some pleasantly unexpected personal kindnesses were exchanged.

Lisa Costello and evacuated our room when the hotel alarms went off, slogging through the near-freezing, blowing sideways rain to reach the lobby rather than walk through the building. There we spent twenty minutes or so chatting with the day manager whilst emergency responders tramped around the hotel verifying that it was a false alarm.

I re-read some C.J. Cherryh. I’m still not doing well with new material, but I’m able to reread old material which appeals to me.

We had a truly excellent calzone for dinner at Pizza Tugos.

How was your day?

[cancer|culture] The hour and manner of one’s passing

I don’t have a lot to add to what’s already being said about the death of Philip Seymour Hoffman. He was a successful actor and director who was still underrated, in my uninformed understanding of Hollywood and Broadway. He took brave and frightening and silly roles, sometimes all at once, and inhabited the screen with a certain everyman awkwardness that was both endearing and familiar.

But death, now death has become a close friend to me this last year. Riding on my shoulder, always at my side, hearing with my ears, speaking with my tongue, thinking with my thoughts. Even as I write this I am lying in a hotel room bed on a heated mattress pad with my right side wrapped in a heating pad, every breath a pain, every movement an ache, each of those tiny, sharp, endless crystal moments a reminder that barring a medical breakthrough of almost literally miraculous proportions, I will be gone in a matter of months and weeks.

As it happens of course, we’re working on that medical breakthrough. That’s why the bed I am lying in happens to be in Ocean City, Maryland, 2,950 miles from my home in Portland, OR. My crowd-funded Whole Genome Sequencing drives a realtime experiment in mutation-based selection of TIL cells happening on a lab bench not far west of here at the National Institutes of Health in Bethesda, Maryland. I am choosing to live, in pain both physical and psychic, for so long as I can. I am perhaps too stupid and stubborn to die any sooner than I might.

Yet, I say this as if I have any direct control over the ways and means of my cancer.

As a matter of philosophy, I don’t oppose what we somewhat ironically call “recreational drug use”. As a matter of philosophy, I support a right to die for those who feel the need to do so. That would almost make me a Libertarian, at least back in the days before that group became Tea Party lunatics and lost all moral and intellectual credibility.

But I strongly oppose harm to others. In any form. Medicating yourself to death, as Hoffman appears to have done (whether accidentally or with a purpose) slays a portion of the hearts of everyone who loves you.

I know this, as I know that my own increasingly overwhelming mortality slays a portion of the hearts of those who love me.

As I’ve said in several other contexts recently, when death is being forced upon you, as it is with me, then life becomes all the more precious. There’s always a tomorrow, no matter how bad today looks.

That’s not me speaking in cliche. That’s me speaking as someone who spent my teens and twenties so gripped in chronic clinical depression that I found it necessary to try to take my own life, and wound up in considerable treatment because of that. I was lucky enough to have a chance to walk it back, and go on to have a life and loves and a child and writing career.

My chances to walk it back are almost gone beyond recall. The hour and manner of my passing is being dictated by genetic inevitability and the toxic tumor-children of my body.

Philip Seymour Hoffman will never have a chance to walk it back now. The hour and manner of his passing has been set and sealed, seemingly by his own hand.

And that makes me sad. For him. For those who loved him in his everyday life. For those among us who admired him from a distance.

Because one of the things that makes me saddest for myself is that there’s always a tomorrow, but soon enough I will never again see the sun rise. Neither will Mr. Hoffman.

The hour and manner of one’s passing is always the last today.