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[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.

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[movies] Elysium and Ender’s Game

Yesterday whilst Lisa Costello was out being busy, [info]the_child wanted to watch a movie. She was really interested in Ender’s Gameimdb ], but wanted to wait for Lisa to come home and watch it. (Knowing of her interest, I’d previously decided not to get into the deeply problematic political issues around OSC, though later, after we finished watching, there was a teachable moment, which I shall describe below.)

So instead we rented Elysiumimdb ] whilst waiting for Lisa. Most of the reviews I’d seen of this movie had panned it, but I actually rather liked the film. It was basically a mashup of In Timeimdb ] and District 9imdb ]. Which is of course unsurprising, since South African Neill Blomkamp directed both District 9 and Elysium. The movie didn’t ask a lot from the viewer, and key elements of worldbuilding fell quite flat on even the most cursory critical consideration, but if you just followed the thread of the action and invested in both the eye candy and the dystopian porn, it held together. Plus [info]the_child and I got to talk about the fact that there are places in the world today just like the horribly decaying shanty towns portrayed in the movie’s grim future. A fun enough SFnal adventure where the show was mostly stolen by Jodie Foster, although Sharlto Copley did a fine job of chewing the rug hard enough to dent the floor, while Matt Damon played his slightly superpowered everyman version of Matt Damon.

After Lisa came home, we tooled up and rented Ender’s Game. Setting aside both my memories of the book and my feelings about OSC, it was a pretty good movie. A lot of the plot was forced, but then, that was kind of the point. With occasional clicks of the pause button for discussion, [info]the_child understood how Ender’s entire existence was being managed by deception and manipulation. Since she’d never read the book, she didn’t know the stakes in the graduation battle sequence until Ender himself found out, and she very much shared his profound sense of anguish and betrayal. I’m not sure I would have enjoyed this film so much if I had not been watching with a teen aged viewer, but I did. Afterwards, when we were talking about Ender and the adults in his life, and the Formics, I was able to explain that the man who wrote that book so full of human understanding and real pain had long since turned into a very sad, vile person who worked very hard to do evil to many other people. She opined that OSC’s personal story was sort of like Ender’s story, which I thought was a fascinating insight.

Maybe today I’ll watch cartoons.

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[movies] The Lego Movie

Yesterday, [info]the_child and I went to a matinee of The Lego Movieimdb ]. I was highly, highly entertained.

A lot of what I’d like to say about the movie would be spoileriffic, and it’s far too new a movie for me to be doing that. Suffice to say that this is one of those movies that falls into the category of “better than it had to be.” The visuals ranged from hilarious to occasionally breathtaking to sometimes goofy. The dialog had some fantastic lines, including one from Metalbeard that had me losing my shit in the theater. Trust me, you’ll know it when you hear it. And while the script didn’t have the depth and heart of some of Pixar’s stronger work, it was plenty warm and worthwhile.

One thing that I loved about this movie was the way they totally owned the cross-licensing. Lego has licenses with half the media universe, and characters show up in this film you’d never, ever see together in any other circumstance. Gandalf arguing with Dumbledore, for example. Plus best movie Batman EVAR. Just retire the Dark Knight franchise now, please. Not to mention which the Batman/Star Wars crossover bit was deeply hilarious.

So, yeah. Unless you just can’t stand animation, or don’t care for light-hearted films, go see this. (Though there are some less light-hearted moments.) The Lego Movie is funny as heck, and short enough not to overplay its gags.

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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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[personal] Happy Birthday to Mother of the Child, with bonus sports snark

Today is Mother of the Child’s birthday. She does not have a social media presence, so I mention it here to wish her well and happiness.

I believe there may also be a significant-to-some-people sporting event somewhere today in honor of her birthday. I wish the contestants well with the same majestic indifference both Mother of the Child and I have always applied to all sporting events not involving [info]the_child herself on the field of play.

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[cancer|personal] How expensive is it to sicken and die?

I mentioned yesterday on social media that in 2013, my household’s out-of-pocket medical expenses exceeded $30,000. Several people asked me how this broke down.

Note that my health insurance covers both [info]the_child and Mother of the Child as well as myself. About $10,000 of that $30,000 was spent on their needs, which I won’t specify further as I don’t discuss their healthcare on my blog for reasons of privacy. Suffice to say that in their own right, they had a very expensive year.

My direct expenses were as follows, in round numbers.

COBRA (Q3-2013 plus January 2014) $6,200

Medical Copays $6,000

Ancillary Supplies $3,500

Pharmacy Copays $1600

Optical $800

Home Care Supplies $700

Massage and Bodywork $500

Dental $350

Misc $50

COBRA is a household expense incurred due to me going on long term disability and losing my employer-sponsored coverage, for which I was paying about $550 per month pre-tax as my employee contribution. I traded that for a $1,600 per month post-tax expense while on a reduced, limited income from disability.

Dental isn’t really a cancer expense.

Optical is money I would not have spent if I hadn’t been sick, as I had to get a new pair of glasses that rested lighter on my face due to the severe skin conditions caused by the Vectibix I was being given through the fall of 2012 and spring of 2013.

Pretty much everything else on there is a direct cancer expense. FYI, “Ancillary Supplies” is nonmedical purchases like the powered recliner I needed to elevate my feet to deal with the hand-foot syndrome caused by Regorafenib — things I would never have bought for any reason other than being ill.

I’m not counting two other major categories of expense. There’s additional ancillary supplies that I might eventually have bought anyway even if I were not sick, such as the large screen LED television because I have so much trouble reading that I have to get my entertainment that way now, and my tiny, elderly television wasn’t working well for me. Also the Windows8 tablet I bought so my power-of-attorney holders, and later on my executor and trustee, can manage my household accounts. Those I have enumerated, but don’t count as medical deductions for tax purposes so they’re not in the above table. They come to roughly another $6,000.

Also, there’s indirect expenses such as increased heating bills due to my reduced cold tolerance, increased food bills due to my intermittent dietary eccentricities, and so forth. That’s a bit harder to account for, but at an educated guess, another $6,000.

I’m also not counting the substantial legal, accounting and financial planning fees I’ve paid for disability counsel and estate planning. Nor am I counting the substantial expenses associated with my funeral arrangements and memorial arrangements. I paid out well over $12,000 in 2013 in this category, and will spend rather more than that in 2014, even assuming I die this year as expected.

Of course now, with the NIH activity, we’re looking at expenses ranging from $4,000 to $7,000 per month for travel and lodging for me and my caregivers. Not all of that comes out of my pocket, but even with a nominal 1/3 split between me, Dad and Lisa Costello, that’s $1,300 to $2,300 per month I’m spending, on top of most of the above expenses.

Historically, since my first metastasis in 2009, I’ve averaged about $10-12,000 per year in expenses. Last year got much more expensive because my illness got much worse. This year I expect the same. So a breakdown of all the above, filtering out expenses for others in my household.

2008 direct medical expense $3,000

2009 direct medical expense $10,000

2010 direct medical expense $10,000

2010 indirect expense $6,000

2011 direct medical expense $10,000

2011 indirect expense $6,000

2012 direct medical expense $12,000

2012 indirect expense $6,000

2013 direct medical expense $19,700

2013 additional ancillary supplies $6,000

2013 indirect expense $6,000

2013 professional fees and funeral expense $12,000

2014 direct medical expense (est.) $20,000

2014 NIH study out of pocket expense (est.) $5,600

2014 additional ancillary supplies (est.) $3,000

2014 indirect expense (est.) $6,000

2014 professional fees and funeral expense (est.) $18,000

In the end, by the time I pass away, I will have spent out of pocket about $159,300 I would not normally have spent in this decade of my life. Add this to the $1,300,000 or so in billed medical services my health insurance carrier has covered, and whatever value one cares to assign to the services I expect to receive at NIH.

So, yeah, cancer is expensive. I suppose any serious illness must be, but this is something of an accounting for what it has taken to buy me the six years of life I’ve managed to eke out since first being diagnosed in April of 2008. Without the immense social privilege I enjoy in being white, male, highly educated and well-employed all my working life, there would have been a lot less money spent and a lot less time eked out by me.

I’m still here, but I’m a damned spendy dude.

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[child|family] A good Christmas

We had a good family Christmas yesterday. [info]the_child was quite overcome by her ‘big’ present, and everybody had a lot of fun. That’s what counts.

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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.

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[cancer] Talking about dying and death

Yesterday, Lisa Costello, Dad and I met with my palliative care doctor. There was some discussion of my sleep issues, now essentially gone because I am off the Regorafenib. We also told them about our efforts at clinical trials. They were less interested in the medical details than in how I was experiencing the process. They talked about people who sometimes had better outcomes without entering chemo or trials at all. I pointed out that I had to be doing something or I’d go nuts.

Also had a long discussion of hospice options and how the place and manner of my death would impact [info]the_child. They provided a list of names of local hospice providers they held in high regard. Naturally, when I checked later, none of these providers were in-network for my health insurance.

We also talked about the difficulty of predicting life expectancy in my situation. The palliative care doctor said there are two main factors in their experience.

The completely unpredictable factor is when and how some catastrophic event occurs. For example, organ failure, or an opportunistic infection. There’s no way to anticipate the timing of such an event, though once it happens, I will likely pass very quickly.

The more predictable factor is rate of change, in effect. As they put it, if I am seeing significant changes in health or functionality that take place over the course of months, I have months yet to live. If I am seeing significant changes over the course of weeks, I have weeks yet to live. When the changes take place over the course of days, I have days yet to live.

Where these two factors intersect, clearly enough, is that unpredictable catastrophic event changing my health literally overnight, or over a day or two. At that point, my remaining life is likely measured in days.

This was both fascinating and sobering, and also one of the most useful descriptions of the dying process I have ever encountered. It neither gives me hope or incites despair, but it does grant me some perspective.

The palliative care doctor wants to continue to see me as I progress through the clinical trials process, every two or three months. I told them we would keep them informed. Our current followups are to check my hospice benefits with my health insurance carrier, figure out which Portland area facilities are in-network, and schedule some site visits. I’ll schedule another visit with my palliative care doctor once we know more about my clinical trial schedule.

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[personal] The weekend and me

Lisa Costello and I both continue a bit under the weather. She thinks we have the same bug, I am not so certain, though she’s probably right. I feel more or less okay in the morning, after a very slow start and a night of oversleeping. By afternoon I am fatigued, logey, mildly headachey, and feel as if I have a fever, though I am not hot. Lisa has much the same symptoms, except with rather stronger headaches.

If she wasn’t going through it with me, I would assume these symptoms signal the beginning of my terminal decline, as they’re pretty close to what I’ve been told to expect. Lisa’s had this for about ten days, I’ve had it for about three. So either a slow moving bug, or the hastening of my demise. Cheerful, eh?

We did have a very nice family-and-friends dinner yesterday afternoon. Lisa sat it out at home, due to how ill she was feeling, and I wound up leaving early for similar reasons. Team E— made smoked pork butt, Jersey Girl in Portland made two potato salads, mom made Moroccan sweet potato salad, while [info]tillyjane and AH combined forces for a green salad and some challah bread. Plus various desserts.

Also, [info]the_child came home last night from her East Coast adventures, but Lisa and I had zonked out by then, so I still haven’t hugged her hello and heard whatever stories she has to tell.

Laying low today, we’ll see what tomorrow brings.

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