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[cancer|personal] Slowly coming back

That was easily the most brutal medical experience of my life. This I say from a life well populated with brutal medical experiences these past six years.

I’m so physically deconditioned from three weeks in bed and some deeply weird medications that just walking around feels like I’m wearing a lead suit. My thoughts are still slow and single focused and erratic, hence the lack of blogging. But I am back, and I am working my way up.

Hopefully this blog will resume its normal schedule sometime in the next few days. I’ll try to blog retroactively about my experiences on the study protocol, though frankly some of them are already lost to medication haze.

At any rate, it’s me, and I am here once more.

Jay

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[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.

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[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.

Blargh!

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…

Grrr.

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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.

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[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.

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[personal] Not much to post about today

I’m too distracted by the overwhelming round of nausea from eating a handful of baby carrots for breakfast.

This is my life.

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[personal] To sleep, perchance to dream; aye, there’s the rub

Most of my life I have been a champion sleeper. Even these days, given the various medications and the healing efforts of my body in decay, I most nights sleep well and deeply.

In my time, I have slept in bathtubs. I have slept on the bare metal of a pick-up bed. I have slept on dirt. I have slept in cars, buses, trains, boats, ships and airplanes. I have slept through parties and all manner of racket. I have slept through earthquakes. I have slept through a Category 3 hurricane on the Texas Gulf Coast and I don’t know how many Pacific typhoons. I have slept through a four-alarm fire in my own college dorm building.

Last night, I could not sleep through Lisa Costello‘s snoring. It was the loudest sound I have ever heard a sleeping human being make. And I am a man who raised a super-powered toddler. I could not even by dint of noble effort imitate or reproduce this sound. If normal snoring can be likened to sawing wood, this was Godzilla tearing apart the lumberyard and being pissed about the splinters.

The thunderous racket entered my dreams twice before fully waking me, at which point I lay in the dark, amazed. All it took to calm the Stentorian flood of sound was a gentle poke. She shifted, snuffled once or twice, and continued to sleep.

I only wish I’d though to fire up the decibel meter on my iPhone.


P.S. – Yes, I have Lisa’s permission to make this post and publicly discuss her sonic shame.

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[personal] Paying for online content

I have a small conflict of interest which crops up from time to time. It did a while back with The Christian Science Monitor, and again just lately with Andrew Sullivan’s site, The Dish. Both are excellent news sources, and both put up a paywall after you’ve read a very limited number of articles.

There are workarounds for some paywalls. Google News gets around The New York Times paywall, for example. If I find or get a tip to a Times story, I can call it up in Google News and click through. That doesn’t seem to work for me for The Christian Science Monitor and The Dish.

I’m not sure it should work for me, frankly. Andrew Sullivan has every right to be able to make a living, and The Christian Science Monitor can’t possibly be cheap to run. They deserve to be paid.

The problem for me is that I read dozens of Web sites every day. I can read hundreds in a given week, following links from other articles or tips people email me for Link Salad.

I simply cannot afford to subscribe to all the sites that want my money. If I made my living as a journalist, Web-based or otherwise, and could count those subscriptions as research expense, maybe I could justify them. Even then, we’re talking many hundreds, perhaps thousands, of dollars per year.

So I just don’t read The Christian Science Monitor, despite their excellent reporting. And I’m giving up on Andrew Sullivan, even though my initial reading of The Dish engaged me considerably. Instead I must rely o commentators and link aggregators elsewhere on the Web for any exposure at all to either of those markets. And so many others.

In effect, this is my personal version of the Paradox of Choice. Too many good choices, and I cannot afford them all. Instead I’m driven away from excellent sources. I can’t afford to pay everyone, so I pay hardly anyone.

That doesn’t seem right. But I don’t perceive a better solution.

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[personal] Lacuna of wit and erudition this day

I slept poorly on Thursday night, so yesterday was very low-and-slow. Still managed some socialization when [info]mlerules came over bearing pizza and we all watched Despicable Me 2imdb ], a household favorite in these here parts.

Having a family gathering at midday today, again here at the house so I don’t have to strain myself going out. I’m capable of driving, but it exhausts me, so I do as little as possible, and only where there’s a strong value associated with that investment of my time and energy.

At any rate, I grew neither irate nor inspired about anything, so today is Banal Blog Post day. Feel free to ask questions in comments, if you wish. About anything that strikes your fancy.

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[personal|publishing] Sometimes they write letters

Yesterday I received one of those emails that a writer gets once or twice in a lifetime. A letter that made every hour of struggle and ounce of sacrifice and year of labor in building my writing career worthwhile.

The story’s not mine to tell, as it involves someone else’s child, but suffice to say that a book I wrote opened an important door for someone who was in great need of such a door.

This is one of the most basic reasons I ever wrote. I tend to assume most writers feel the same way. That we want to reach other people.

I reached someone. I am humbled and proud.

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