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[personal|cancer] Friends and aftermaths

Yesterday, [info]scarlettina came over to visit Lisa Costello and me and [info]the_child. She made her mother’s brisket recipe, then [info]davidlevine and [info]kateyule joined us for the consumption thereof.

It was fun to see them, and fun to hang out, but the aftermath was tough.

As dinner was winding up, I came down with a very bad chill. No shakes, no fever, nothing else along the lines of the opening salvo of a cold or flu. Just a bone-deep chill, and incredible fatigue. I wound up having to go off to bed and lie down under the blankets, the electric one cranked up all the way to high. After about an hour or an hour and a half, as I was finally falling miserably asleep, the chill abated somewhat.

This is the third or fourth time I’ve had one of these “cold flashes” in the past month. I’m suspecting ever more strongly this is a precursor of my body’s functional breakdown in the end stages of my terminal cancer. They come on when I am tired, underfed, or otherwise stressed, but they are neither predictable nor obvious. At least not yet.

It scares me, and it wears me out hard.

[cancer] Getting the brain MRI, the further adventures of Self-Directed Patient Man

Getting the brain MRI this past Wednesday was a pretty tedious process.

First of all, in the continuing tradition of a daily crisis in my life, just as I was sitting down to dinner with Lisa Costello, Jersey Girl in Portland and C—, the hospital called to tell me that their MRI machine was down and my appointment that evening was cancelled.

I had a polite shit fit about that over the phone. I explained that I am a terminal cancer patient going to NIH next week to try to enter a clinical trial which might extend my life. I explained that I needed the MRI performed, read and released to me by mid-day Thursday so I had time to request a disc from the Imaging Library and overnight it to NIH for Friday delivery, as this was part of my qualification process for the trial.

A few moments later the person on the phone came back and said that I qualified for the exception list. The other MRI machine was up and running, but they were so backed up that they were only scheduling people with critical and immediate needs. My 9:45 pm appointment was rescheduled for 9:45 pm, but on the other, still-working MRI machine.

Having dispensed with my weekly requirement for adrenaline surges (for about the fourth time this week), we proceeded to have our dinner and go for our soak at Common Ground Wellness Center. Then Lisa and I hied ourselves over to the hospital complex, because we figured being in the waiting area and thus undeniably in line for the procedure should something else go wrong was all to the good.

This resulted in us spending nearly three hours in a deserted waiting room in a deserted building at night. A few other patients wafted through. MRIs take a long time, so three hours was enough for two people before us. A rather put upon, but still appropriately polite and professional, tech made occasional appearances. Mostly we sat and played with our iPads and tried real hard not to fall asleep.

While I’ve had MRIs before, I’ve never had a brain MRI before. If you’ve never seen an MRI machine, rest assured that they are terrible traps for the claustrophobic or the circumferentially enhanced (I fall into that latter category myself). And frankly, much time spent in an MRI would drive anyone to claustrophobia. And they are noisy. Like Anvil Chorus noisy. Like sticking your head in a jet engine noisy. Something on the order of 125 dB clanging right next to your ears for however long you’re in there.

I was handed earplugs. A mask was put over my entire head that looked sort of like a cross between the Alien facehugger and something Dumas wrote about, rendered in the bland, taupe, pebble-finished plastic so beloved of technology designers. Pads were inserted around my head, after a brief discussion of how surprisingly large my skull is.

I then spent forty-five minutes in the tube.

Lately I’ve been meditating in the mornings. As a formal practice, I mean, not the lie-in-bed-and-groan-about-morning meditation that we all indulge in from time to time. So I meditated inside the MRI tube for forty-five minutes. Which is about like trying to meditate on the flight line of an aircraft carrier. On the plus side, the tech later reported that I held amazingly still, which helped them get good images as quickly as possible. On the minus side, I had my head in an MRI tube for forty-five minutes.

We also had yet another discussion of why I needed a stat read from Radiology, and what I was doing with the scan. The tech confirmed that I did indeed have a brain. The next day, Radiology confirmed that I did indeed have no intracranial metastatic disease. (This was the desired outcome.) After a certain amount of me calling around and cajoling people Thursday morning, I got my discs and sent them out.

Once again, I had to be pushy and pushy again. Self-directed patienthood is not for the faint of heart or unassertive. But combined with Tuesday’s CT scan adventures, I pulled two major medical procedures out of my treating hospital in two days. It sure helps that my providers have come to know me well, and understand that I’m not a loose cannon. It sure helps that my health insurance carrier covers this stuff without pre-authorization. It sure helps more that I know who to call and what to say.

At any rate, the brain MRI is in NIH’s hands as of yesterday afternoon, and I am still off at the end of this coming week.

[cancer|personal] Trapped in a whirling morass of urgency, as my friends grow ever more distant

Last night I dreamt something long and complex, which is now lost to me. However, at the end of it, I was in a coffee house on a college campus somewhere. It was indoors, part of a student union building or some such. The students around me were of various ages, and one or two had small children with them.

I’d been drinking hot chocolate and reading. It came time to leave so I began to pack up. As I wound my scarf around my neck, my hat fell off. When I bent to pick up my hat, my gloves slipped out of my coat pocket. I couldn’t fit all my stuff into my pack. And so on.

Around me the coffee house was closing up. As people left, they kept dropping things too. I started trying to collect the other lost belongings in the hopes of returning them. The barista was pushing the tables to the back and stacking them so she could mop the floor. My table disappeared, and most of my stuff with it. I kept running around desperately trying to retrieve everything. I only succeeded in dropping more and more of what was in my arms, most of it not even mine.

It doesn’t take a psychology degree to work out the meaning of that. No more than most of my dreams. And this has been my week. If there is no significant crisis or disaster in my life today, it will be the first day since last Sunday for which that has been true. I have rushed from one problem to the next, solving few of them, and seeing most of them generate more problems like a runaway software process spawning malign threads.

Such is my life these days. This week has been an unusually pointed example. But in all seriousness, Lisa Costello estimated recently that based on the experience of the past few months, even on my best weeks I cannot get any three days in a row without something overwhelming happening.

This distraction factor spills over into everything. Ever since the cancelled trip to Europe, I have been unable to schedule social time with friends. The big stuff is more obvious — because my medical schedule keeps shifting so randomly, I cannot make commitments to out-of-town friends who need lead time to arrange work vacation days and procure plane tickets. Less stringently, I can’t even commit to Seattle friends who can be more flexible because they’re driving or taking the train or the Bolt Bus.

But even the local stuff gets killed. I’m going to Maryland at the end of the month to see about two different clinical trials at the National Institutes of Health. That means I won’t be here for my December 31st appointment with my palliative care doctor. They’re impossible to see on short notice, so I had to take a reschedule for Monday, December 16th. Exactly when I had a midday date with Jersey Girl in Portland. Her daily/weekly schedule and mine are so misaligned even normally that when I have to cancel with her, it can take us weeks to reschedule.

I can’t keep up with anything anymore, not with the absolute priority of maintaining what’s left of my life and health, and the resultant very erratic and frequent scheduling demands of that process. So my out of town friends slowly stop offering to come see me because I can never commit to a time. Most days I’m too rushed and fuddled to even be smart about keeping up emails or texts or phone calls whatever, so it’s harder and harder to maintain my relationships even remotely. My local friends get used to me cancelling and being unable to reschedule easily. My life narrows a bit more week by week, as it does in so many other ways.

My attention span degrades, my social availability degrades, and instead I am trapped in a whirling morass of urgency. I hate this.

Welcome to late stage cancer, Jay.

[movies] Frozen and The Hobbit: The Desolation of Smaug

In the past week, I have managed to see both Frozenimdb ] and The Hobbit: The Desolation of Smaugimdb ].

My capsule reviews…

Frozen: Does for Nordic culture what Brave did for Celtic culture.

The Hobbit: The Desolation of Smaug: The Starship Troopers of fantasy movies. A feature film made from 2.5 chapters of a completely different book. Fun, though.

Slightly more detailed thoughts…

Unlike almost every other recent animated film nominally targeted at the children’s demographic, Frozen really did not have an adult layer. A handful of specific jokes and lyrics, perhaps, but that’s about it. This film relentlessly targets the ‘Disney Princess’ demographic. Also, as [info]elusivem pointed out to me, it was clearly written to become a Broadway show. The first half of the movie is almost nothing but show tunes numbers, and the voice cast are largely Broadway stars. As a movie-goer, I resent this with the same low-grade irritation that I resent movie scenes clearly intended to fuel the forthcoming video game. I want to watch a movie that was intended to make sense as a movie, not go see part of a multimedia, multichannel marketing vehicle.

As for The Hobbit: The Desolation of Smaug, yay Peter Jackson for having the money and the sponsorship to make eight or nine hours of Lord of the Rings fanfic. When I think about the book, these movies are such an utter waste of potential. (This is very nearly the opposite of my feelings about Jackson’s Lord of the Rings films, mind you.) When I take them on their own terms, these movies are more entertaining than my complaint implies, though the second one is much better than the first. And it’s mildly weird to see Legolas look decidedly middle-aged after his youthful appearance in a movie set decades later. You’d think Weta could have done something about that. Otherwise, I stand by my capsule review. This one is fun if you leave your memory of the book at home.

[cancer] Yesterday, all my troubles seemed so close at hand

Yesterday was a difficult day. It began with early morning phone calls to the NIH in Maryland, and ran all day in a tight chain of events, almost everything behind schedule (my oncologist was an hour late), each missed time slot impacting the next. Appointments, meetings, consultations. Many of them with frustrating outcomes. The kind of day with a lot of irritating and difficult moments, and no time between to recover and process what happened before proceeding to the next.

On the plus side, [info]mlerules got me to a nice dinner with Lisa Costello at Podnah’s Pit BBQ, followed by a nice soak for the three of us in the spa at Common Ground Wellness Center.

This, of course, following Monday’s travel madness, and a Tuesday just as filled with appointments and frustrations. I had higher hopes for today, but so far today’s pretty much following the template for the week.

This whole disability thing? I’m busier and more stressed than I was when I was working full time. How the hell does that even happen?

[personal|dreams] Die Traumdeutung

It’s 13 degrees outside, with a windchill below zero, and snowing merrily. Supposed to accumulate two to four inches today here in Omaha. Luckily I am flying tomorrow, which is supposed to be clear and calm, though still colder than Dorgau’s hindmost paps.

Low-key day today after yesterday’s roaming about the wilds of southwestern Iowa. I think we’re catching a movie this afternoon, and an early dinner. Another friend may pop by the hotel to visit a little while this evening, weather and schedule permitting.

Last night I had, as usual, complex dreams. The part where my house was flooding to the window sashes in clear, warm water wasn’t hard to understand. My bladder has a sharp voice in my nighttime wanderings. The part where Zachary Quinto leapt out of a wrecked VW bus to attack me with a badminton racquet was a little harder to interpret, but I went with it. After fighting Mr. Quinto off, of course.

That last part is odd. While I often dream about real people, either directly or in the form of a dream avatar, I quite rarely dream about people I do not actually know personally.

I’ve spent time with the folks from my prior Day Jobbe. That was good but also sobering. I went on disability there just shortly after my tenth anniversary of service. That makes the Day Jobbe my longest-tenured employment in 26 years of working professionally across three related industries, by a fairly substantial margin. A big part of my life. It was work I enjoyed, with people I (mostly) liked, in a field where, while I wasn’t exactly working for the betterment of mankind, neither was I helping make anyone’s life worse. It was also work which enabled me to have a writing career through a good work-life balance and a decent paycheck. And, later it on, it was work of a sort that allowed me to segue into the deeper phases of my illness without an abrupt economic disruption, both through disability-friendly management and workplace policies, as well as a very good benefits package that turned out to make a critical difference in my life in at least three different ways.

So a lot to reflect on here in Omaha. Plus, well, Zachary Quinto. And snow.

[photos|travel] My trip to Omaha (at least so far)

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I flew there, of course

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Hanging with the pooches

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A friendly meighborhood duck

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Yesterday we set out in the car of [info]garyomaha

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As always in life, we drove down uncertain roads

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Until we came to my joint in Shenandoah, Iowa

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A slightly more sobering neighbor

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Me and my namesake (or vice versa)

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The store was full of cool old things, like those sliding ladders, and the manager was very kind about us wandering around gawping and photographing

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[info]elusivem and [info]garyomaha enjoyed old fashioned fountain treats (I had an iced tea)

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Themselves

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We then looked at interesting old buildings in Shenandoah, which reminded me of my grandparents’ town in north Texas when I was a small boy in the late 1960s

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Including a dry-docked caboose

As usual, more at the Flickr set.

Photos © 2012, 2013, Joseph E. Lake, Jr. and M. Jones.

Creative Commons License

This work by Joseph E. Lake, Jr. and M. Jones is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

[personal] Another day in Omaha

Yesterday was quite fine, but I overslept badly last night, in more than one sense of that phrase. I was asleep, or at least nominally unconscious, for nine hours. My sleep was very fitful, and plagued with odd dreams, mostly about unsuccessful attempts at travel insofar as I can recall.

Once again I woke up later than I hoped, and have wound up feeling rushed this morning. I have a tentative 10 am appointment at my hold workplace, and a firm 10:45 am leading to a group lunch. I’m planning to spend the afternoon with [info]garyomaha, then he and I will join some more friends for dinner.

How can I feel so busy when logically I am taking things easy? One of life’s sweet mysteries. Meanwhile, efforts proceed apace on securing clinical trials, and various other life issues such as car repair, fixing my broken recliner, and dealing with the problems I’ve been yammering about of late. As for the personal generosity that has been shown to me this week, thank you so very much. You know who you are…

Off to the cold soon. It is currently zero degrees F outside here.

[personal] In Omaha, various reflections, an open dinner of sorts

I’m in Omaha, where it is currently 10 degrees outside. Because reasons.

Due to travel (which went fairly well, minus a few bobbles) I did not get to sleep until a little after midnight last night. Even allowing for the two-hour time difference between Pacific and Central, this is staggeringly late for me. It is probably no coincidence that I slept solidly for nine and a half hours.

The downside of that is due to a lunch date with a friend, my morning has been very rushed and out of sorts, where I’d expected to move slow and fly low today. Hence also the late blogging.

The Omaha Beach Party meets tonight at 6 pm at Zio’s on Dodge. If you’re within striking distance of Omaha and would like to see me, feel free to drop by. It will be a bunch of writers and friends eating pizza and yakking for a couple of hours.

Meanwhile, being here is bringing a bunch of my mortality thoughts hurtling back to the surface. I’ve spent the years from 1999 to 2013 working jobs either based in Omaha or with a strong connection to Omaha. I’ve visited this city at least a hundred times, literally so — that’s not hyperbole, that’s 8-14 trips a year across most of those 14 years. Omaha represents one of this big parts of my life that has already sloughed away in the face of cancer’s mortal decline.

Still, weather and ruminations notwithstanding, I am happy to be here. I will see my old work friends, and spend the weekend with some of my dearest friends in the world. That is a goodness.

Back to Portland on Monday, and a medical appointment on Tuesday regarding one of my possible avenues for a clinical trial. No rest for the weary. (Well, except that long night’s sleep.)

See some, all or none of you tonight.

[cancer] Field notes from Cancerland, in a deep and dark December

Health metrics

I am tracking an increasing number of health metrics. I now measure my blood pressure every morning along with my weight, and just lately have begun tracking blood sugar as well. The blood pressure measurement is a function of monitoring medication side effects. The blood sugar tracking is because some of the studies I am interested in require a certain range, generally focused on me not being diabetic.

As it happens, I was diagnosed a few years ago as pre-diabetic. Given my current life expectancy, the issue of my potential diabetes has slipped quite low on our list of medical priorities. However, keeping my glucose both low and steady has a number of benefits besides keeping me in range for certain studies. The downside of this, of course, is some of the things I love most to eat (pizza, anyone?) are not conducive to managing blood sugar.

Lisa Costello follows a long term diet protocol focused on nominal-to-no intake of simple sugars and simple carbs. The easiest thing for me to do is eat off her menu, which would benefit both of us. I will have to be careful about feelings of deprivation, which are always the biggest threat to any diet plan I follow. On the other hand, my entire life is made of creeping deprivation these days. Why should this be any different?

Morning routine

My morning routine continues to evolve. Right now I wake up, cuddle with Lisa a bit, go relieve myself (without eating or drinking anything but a sip or two of tapwater), weigh myself, take my blood pressure, check my blood sugar, exercise for 30 minutes, mediate for 8 minutes (I am about to up that to 10 minutes), make and eat breakfast, then blog. I’m trying to sort out if I should re-order any of this activity. For example, would I be better off meditating before checking my blood pressure and blood sugar? All this takes quite a bit longer than my old, workaday morning routine, and I’m not quite accustomed to that, either. I rarely have morning time pressures any more, except for the occasional early appointment or scheduled phone call, but old habits die hard.

Continuing to pursue clinical trials

I have an intake appointment next week after my return from Omaha (one of two days, which as yet not confirmed) for a trial here in the Portland area outside of my treating hospital. There have been a number of phone calls and emails between me, Dad, two different entities at the National Institutes of Health, and my treating hospital about records transfer. Stuff is happening. What it means, and what happens next continues very unclear.

Visiting friends

Between Lisa’s family issues and my medical uncertainties, I’ve been staving off out-of-town friends who want to visit. Unfortunately for me, those medical uncertainties are probably the status quo for the rest of my short life. So Lisa and I are looking at calendars with an eye toward me scheduling people to see me again, except that any plans I make are subject to sudden change or cancellation. This is very frustrating, but as I said to [info]yourbob, this is also me being a dithering idiot, not a dick.

United Airlines

United Airlines has again turned down our request for a refund of the cancelled flights to the UK. I will post a more detailed commentary on this in the next day or so, but I’m very frustrated and more than a little appalled. What the hell is the point of having a compassionate refund policy for medical emergencies (which they nominally do) if a parent’s massive stroke doesn’t qualify as a medical emergency? It’s not like I’m ever going to have a chance to go back to Europe at this point, so a putative fare credit doesn’t do me any good.

Disability insurance

Speaking of frustrated, my disability insurance carrier has just taken $8,400 per year out of my pocket through an entirely legal scam protected by the ERISA statutes and associated case law. While the issue is something I might even prevail upon through appeals and legal action, I do not have the time in my life or resources to fight an organization with hundreds of attorneys on staff. Which is precisely what they count on, of course. Better to squash people like me now than open the door to thousands of similar claims. This is an issue which can ultimately only be addressed by Congress, but as the insurance industry has much better lobbyists and makes much larger campaign contributions than any individuals like me ever will, I’m pretty much screwed. As is everyone else ever in my position.

The worst part is, I can’t even fight this out publicly, as my carrier has completely legal unilateral authority to modify or suspend payments to me for any cause they care to establish. (Another ERISA scam.) This means that if I make trouble for them, all they have to do is suspend payments while they commence an audit of my claim and I am flat out of money.

It’s a criminally stupid system that absolutely privileges corporate capital and shareholders at the expense of consumers in need, and the game is so rigged that it’s impossible for an individual to fight. And this is a set of issues that I, like most Americans, was completely unaware of until I fell into the trap.

Welcome to the marvelous land of disability. Our society’s treatment of those in the worst sorts of need is criminally immoral. And I say this as one of the luckiest ones in my situation.

ETA: A couple of things I should have noted.

(1) I already have a very competent disability rights attorney advising me. That’s how I know what I do about ERISA and the appeals process. Their advice essentially boils down to, “Sucks to be disabled, doesn’t it?”

(2) The actual amount of money being taken from with force of law is rather higher than $8,400. The rest of it is being made up by “offsets” connected to SSDI benefits, etc., which serve no actuarial or financial purpose except to reduce my disability carrier’s liability exposure, and come at some significant cost to me in terms of tax consequences and so forth. Frankly, that’s legalized theft, too, but it only sets me back a few thousand dollars per year. The $8,400 is the amount of my dead loss due to their interpretation of their right of offset, for which I actually have no offset whatsoever

[personal] Moving right along

Still feeling pretty loopy from this low grade bug. Very much in a state of anticipation this week, and not in the fun way. I’m currently scheduled to fly to Omaha Wednesday for one last round of visiting with my many friends and colleagues there. I’m pretty sure this trip will happen, at least at the front end. Waiting to hear back from various clinical trial sources about my next moves there (NIH and elsewhere). Any of those phone calls and emails could trigger an intake visit at their convenience. Plus I have to sign my updated will and estate planning documents this Wednesday, right before I head for the airport.

Various friends want to come visit. I’ve been reluctantly putting everyone off for the sake of sorting out some of this healthcare stuff. It’s leaving me slightly testy, but I don’t see much point in firming plans which are more likely to fall over than not. At the same, in putting people off I’m putting off things I want to do while I’m in relative good health.

So, yeah. Grumble grumble. I’m alive today, I should be grateful. But sometimes I feel like I inhabit the bottom of a deep well of logistics, and it’s all shifting shadows and angles of the light down here.