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[personal] Five things make a post, I think

Let’s see if I can count.

1) Dad, Lisa Costello and I are flying home this afternoon. This because NIH pushed back the start date of my immunotherapy by about three weeks from what we originally expected. I can’t really complain, as the reason for this is the genetic selection phase they added to the protocol in order to leverage my Whole Genome Sequencing data and optimize the TIL cell infusion, but it adds another layer of financial cost and logistical complexity to the whole business. Frankly, instead of waiting here to start treatment, we’d have gone home two weeks ago if we’d understood the schedule. Such is personalized medicine in this age of miracle and wonders.

2) I am increasingly interested in seeing the The Lego Movieimdb ]. This film seems to fall into the category I call “movies which are much better than they have to be.” A good example of this is 2012’s ParaNormanimdb ], which was an animated kids’ comedy about a zombie attack on a New England town. But it had a clever, well thought out script with an ending far more humane than one would ever expect from a zombie movie, which made watching ParaNorman a much more rewarding experience than one would ever expect from the film’s subject matter, genre or marketing. So perhaps with Lego. Maybe this week.

3) The persistent pain knot in my chest has faded a bit. I have recently started taking gabapentin for it. I’m not sure if the connection is causal, as gabapentin has a titration period before it becomes effective. In reading up on gabapentin, I discovered that it can be recreationally abused. Which amazed me. I guess people really will try anything.

4) I have been trying to compose a post about Kansas House Bill 2453, which is a profoundly senseless, cruel effort to enshrine wholesale persecution of gay and lesbian citizens into law, masquerading as a defense of religious freedom. I just can’t figure out what to say that doesn’t make me sound so shrill and angry that I can’t even stand to read it myself. This is the apotheosis of the Republican religious-conservative axis into Poe’s Law, in which their extremism has transcended even self-parody. I have only one question for the religious conservatives of Kansas: “Would you do as you would be done by?” Sadly, we already know the answer to that one.

5) After that number four, I don’t have the heart for a fifth. I guess I can’t count.

[personal|culture] Valentine’s Day

I was one of those kids in grade school and junior high for whom Valentine’s Day was a torture. You know, getting the “pity Valentine”, or one from the teacher but none from the students. Almost always the new kid who’d just come in to the class, socially and physically awkward, mouthy, too smart and not wise enough to hide it. So this is a holiday that’s never pleased me much, because it always seemed to be as much about exclusion as inclusion.

That being said, as an adult, I’m glad there’s a celebration of romance for those people who have romance in their lives. Hooray for love, right?

But romantic love isn’t binary, and romantic love isn’t exclusive, and romantic love isn’t as simple or enduring or fulfilling as almost all our cultural reinforcement would have us believe. Even at its best, romantic love is complicated stuff, and it is hard work. All the more so if you don’t fit the mold.

In truth, who does fit the mold?

I know the desperation of fading hope, and I know the fulfillment of a well cared-for heart. Especially these days, thanks to Lisa Costello, who stands by me in the face of overwhelming adversity.

But really? Love yourself today. Remind yourself that in taking care of you, first, you make yourself available to any partners, current or prospective, to your kids and pets if you have them in your life, to the world as a whole. We all ought to send ourselves hearts and flowers first. Then we’ll be ready to love one another.

From the kid in the corner being giggled at behind the hands of the rest of the class, you are not alone. And it can be better.

Happy Valentine’s Day, whatever that means to you.

[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.

[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?

[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.

[personal] A note on the blogging calendar this week and next

As I am having thoracic surgery this coming Thursday, January 23rd, I do not expect to be blogging for several days. Lisa Costello will have the keys to the blog, and be updating when and as she can. Also, watch her Facebook wall for latest and most frequent updates.

Even when I do resume blogging, depending on the arc of my surgical recovery, it may be a while before my usual daily posting schedule is back in place.

Meanwhile, I am flying to the Washington area tomorrow morning, and will be admitted to the NIH inpatient facility for pre-operative care tomorrow evening.

[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.

[cancer|personal] Progress is being made at NIH

We are advancing, albeit slowly, here at NIH. I have chosen a study out of the five we were offered across three teams of investigators. This in turn has led to more choices, some of which are dependent on lab work which is even now being done.

Today I have an EKG (again) and a pulmonary workup. We’ll also be chasing several administrative issues at NIH while we’re there.

Thursday I have a leukapheresis session scheduled. This include an outpatient procedure to insert a catheter in my femoral artery, as the veins in my arms are not suitable for the large-gauge needles normally used. I believe that will last much of the day due to the need to filter a very high volume of blood.

Friday I have a consultation with the thoracic surgery group. There may also be a consultation with the infectious disease group to formally clear up a rather odd lingering issue from my childhood overseas.

I expect to fly back to Portland on Saturday, and return to Maryland around January 21st for thoracic surgery on January 23rd. The goal of the surgery is a non-therapeutic resection to harvest sufficient tumor tissue for culturing of naturally-occurring healthy immune cells typically found interpenetrated with solid tumors. I will return again in early February for a rather complex series of treatments involving a roughly three-week inpatient stay at the hospital on the NIH campus.

Some of the above may change, depending on the lab work results I mentioned, but that’s the current plan. I’ve been cleared to discuss the treatment in a general way on the blog and in social media, but am awaiting another conversation with the physicians before getting into detail about the science and the treatment processes. I want to make sure that I am respecting any confidentiality issues around the research in progress.

I will say that NIH sheds a whole new light on the old conservative scare phrase, “I’m from the government and I’m here to help.” This is socialized medicine in its most literal American incarnation, and it’s damned good medicine with a very positive patient experience so far. Your tax dollars and mine are hard work, doing things that may eventually help cure millions. It’s an honor to be a guinea pig here.

Onward we go.

[personal] Dining with the Slacktivist

Dad, Lisa Costello and I met Slacktivist Fred Clark for lunch yesterday. Fred was kind enough to drive down from his home in Pennsylvania to dine here in Rockville, Maryland, near our hotel.

It was a fascinating lunch. Fred is a gentleman, as well as a smart and entertaining human being. I already knew this from reading his blog for years now, but it was fun to confirm that in person. We talked about families, life and cancer for a while, then veered off into theology, sociology and the Christian experience. Fred’s perspective and mine are rather different in some important ways, but quite well-aligned in other ways just as important. Plus we both went to Christian schools as kids, albeit under very different circumstances.

I was highly entertained, learned more than a few things and had a very good time. I am pretty sure Dad and Lisa did, too, and I hope Fred did as well.

The lunch was one small bonus for this trip.

[cancer|personal] The high cost of being in Bethesda – looking for help

We’re running into some significant planning and budget issues as we consider the trials here at NIH. I could use some help of the thinking kind, especially if you live in the Baltimore/Washington area.

Any trial at NIH requires me to spend time in Bethesda, Maryland. They provide financial assistance for patient airfare, and a nominal daily stipend, but that doesn’t account for airfares for anyone who comes with me, and the stipend only covers about 25% of the daily cost of being here. As at least one trial requires me being here about 2.5 to 3 weeks per month for the first few months, this gets expensive very fast. Depending on the study, somewhere between $3,000 and $7,000 per month if we do everything at rack rate — airfare, rental car, hotel.

We’re looking at options. The American Cancer Society has several programs for reduced price or free lodging in the area for patients receiving treatment. As of yet, I have no idea what the availability is, or whether I qualify. We’ll be investigating that tomorrow.

This boils down to four issues: airfare, lodging, vehicle, meals. Airfare we can cover at least for now (among other things, I do have tons of frequent flier miles). Meals are more or less a wash, as I eat whether I’m here or in Portland, though being here involves eating out more, and restaurants seem to be more expensive.

Regarding lodging, does anyone have any suggestions for cost-effective short-to-medium term housing? I can’t sign anything more than a month-to-month lease, because I have no idea how long any study will last for me. I could wash out in month one, or could go on for many months. Or if you have a mother-in-law unit or a vacant rental property that we might discuss the use of, please let me know. (We need two bedrooms with a bathroom and kitchen.)

Regarding a vehicle, I am considering buying a cheap used car in Portland and having it brought out here. A friend has already volunteered to drive it cross-country. Also possible to buy a car here, I suppose, but our recent experiences with Maryland’s DMV make me very wary of doing anything like that in this state. But if you have a spare vehicle that I might be able to use intermittently while I’m here, as much as three weeks a month depending on the study protocol, please let me know.

This might turn into a fundraising effort later on, but I’m looking for simpler solutions first. If you have any thoughts, please share them.