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[cancer|science] Touring the TIL Cell laboratory, finding big science in my genes

Yesterday, the scientist in charge of some of the big science behind my TIL cell therapy took us on a tour of his lab, as well as a flyby of the TIL Cell lab, where they are growing my wee little TIL cells to their full robustness (ca. 30-100 billion cells at the end of the process). (I did secure permission to mention his name and use of these photos, for noncommercial purposes such as this blog.) Dr. Eric Tran, Ph.D., Postdoctoral Fellow, Surgery Branch, Tumor Immunology Section was kind enough to spend an hour walking us around and talking through the biology of what Dr. Rosenberg’s group is hoping to do for me.

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Dr. Tran his own self.

As is the case with most bio labs I’ve seen, at first glance there’s not all that much to look at. Everything important is happening in little dishes inside of incubators. But there’s still cool science stuff sitting around, and cool science people doing cool science things. And since this science has a great deal to do with the current attempt to extend my life and wrest more time from the thieving arms of cancer, I was very glad to see what I could see and learn what I could learn.

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Typical lab sign. I took this to mean “don’t eat your lunch in here”.

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Except this one. I took this one to mean “don’t even think about ever having eaten your lunch in here”.

Dr. Tran showed us the door to the lab where my main cultures are growing right now. They are culturing both my B cells and TIL cells. The B cells are in part to provide a medium for the TIL cells, and part to do Science!!! with me as the human petri dish. The lab is off-limits for non-workers, for reasons of safety and sterility. (The cell cultures’ safety and sterility, not ours.)

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The lab where little bits of me are rapidly becoming lots more little bits of me. Hi, kids!

He then took us down to another lab where other human TIL cells are being cultivated for experimental work rather than clinical treatment.

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The official TIL cell lab, where bits of me ain’t.

There we saw TIL cells in their media packages within the incubator, as well as under an optical microscope. This was pretty cool, as we saw the difference between activated and inactivated TIL cells.

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Lisa Costello, learning something.

That distinction between inactive and active is one of the things on which this whole treatment concept hinges. Healthy human TIL cells can be found interpenetrated with many kinds of tumor tissue. They have an affinity for tumors, which allows them to locate and invade the tumor. But the cancer has an ability to inactivate them, or leave them inactivated, depending on the situation. In effect, the cancer can turn these immune cells off.

Dr. Rosenberg’s group, through the work of researchers such as Dr. Tran, have found that the TIL cells can be reactivated. Once turned on, they will then attack the cancer cells which they previously interpenetrated on a quiescent basis. This works in the mouse model. This works in the petri dish with human cells. This works in some human cancers, such as melanomas. Dr. Tran’s area of study is how this might work in digestive cancers, such as my metastatic colon cancer.

What they did after last Thursday’s surgery was mince most of the retrieved tumor tissue down to very fine pieces, a few millimeters in diameter at most. This is still much larger than the relevant cells, so most were not damaged. The tumor chunks were then placed in a medium which is very friendly to TIL cells. My TIL cells began outmigrating from the tumor chunks at a vigorous rate. Dr. Tran felt this was a good sign, which was also a comment made by my two primary doctors, Dr. Klebanoff and Dr. Klemen. My B cells derived from my recent apheresis have also been cultivating well. This makes all three of them hopeful for the next steps.

Where things get kind of different for me is that thanks to all you folks out there in the world, I brought my own Whole Genome Sequencing (WGS) data to the party. In that data, the researchers found that my colon cancer has over 100 mutations, which is somewhat higher than normal, but not freakishly so. In identifying these mutations, the researchers can add an extra step to their protocol which they’ve only ever been able to do once before, and never with WGS data. That is to say, Dr. Tran will introduce those mutations specific to my cancer genome to my own B cells, then assessing whether my TIL cells react to any of the mutations as expressed in those B cells.

In effect, Dr. Tran can select from among my TIL cells for those mostly likely to target known mutation sites in the cancer’s genome, and thus attack only the cancer cells in my body. This adds a layer of genomic medicine to the already distinctly high-tech immunotherapy which is being studied in this protocol. He can then be sure that Dr.s Klebanoff and Klemen are working with the best possible pool of TIL cells to put back into my body in the infusion phase of the protocol.

This is about as cutting edge as it gets. The one other patient they tried this was someone they were able to do an Exome Sequencing run on, which can be critically valuable. I’m the first patient ever to bring the sequencing data in the door with me. And with my WGS data, Dr. Rosenberg’s team has the keys to the kingdom.

So Dr. Tran is using Big Science and Big Data to build the most efficient TIL cell infusion possible for Drs. Klebanoff and Klemen to go after my cancer.

The downside, such as it is, is that this filtering and selection of my TIL cells may add as much as a week to my TIL cell infusion start date, and may keep me in the NIH hospital as much as a week longer than we originally anticipated.

It doesn’t get much cooler than this. New doors in immunotherapy and genomic medicine are being opened by my case, with your support, first of the Sequence a Science Fiction Writer fundraiser last year, and ongoing right now the Science Fiction Author on Trial (NIH trial, that is!) fundraiser. Even though we’ve met goal on the new fundraiser, the targeted mutation screening step has added several thousand more dollars to our costs by extending our stay in Maryland, so every dollar helps.

By reading, by promoting, by donating, by supporting, this community of my friends and fans and readers and genre folk and cancer activists and patients and caregivers have helped slap down a big old paving stone on the path to better, more effective cancer treatments. I’m out at the pointy end of the stick right now, being helped by Dr. Tran and Dr. Klebanoff and Dr. Klemen and Lisa Costello and Dad and my family and friends, but none of us would be out here on the stick without you.

Thank you so very much.

I’ll leave you with this final thought from the hallway outside the labs.

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Photos © 2008, 2014, Joseph E. Lake, Jr. All photos taken with permission.

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[cancer] Surviving the trip, surviving the hospital

Tuesday morning getting to the airport was tough. 205 was all but closed down by multiple accidents. Mom drove me on surface streets. As I was checking in at the airport for my nonstop flight to DCA, the flight was cancelled. Literally while I was at the counter. So many flights were being cancelled due to the East Coast weather that the best rebook I could get was the same flight the next day, Wednesday. This would have put me at the NIH hospital at 7 or 8 pm the evening before my surgery first thing the next day. Given that I had a schedule of pre-operative testing, that wasn’t going to be very practical. I would lose my surgery slot and have to reschedule everything, probably weeks down the road.

Mom drove me home again, while I texted and emailed with various folks. Donnie Reynolds was offering to drive me to NIH in Bethesda if I could get as far to the east as I could, but coming from the west, Memphis was the closest airport that wasn’t being shut down. Then my friend Gray Rinehart Facebook messaged me that if I could fly into Raleigh-Durham, he could drive me to DC Wednesday morning.

Even that was cutting it too close for comfort, but Donnie was willing to fly to Raleigh-Durham and drive me overnight.

Meanwhile, I couldn’t get anyone at NIH on the phone due to so many offices being shut down with the weather. After consulting with Lisa Costello and Dad, I made a command decision to buy the stupidly expensive and completely unbudgeted one way ticket to Raleigh-Durham, arriving at 11:40 pm Tuesday night. (The same night I was supposed to check in to the hospital around 7 or 8 pm.)

I flew. Donnie caught up with me in Dallas, where we ate Monte Cristo sandwiches at Bennigan’s, then we flew on to Raleigh-Durham. The woman on our row was struggling with a panic attack after boarding, to the point where the flight attendant was obviously considering putting her off the plane rather than risk an in-flight emergency. When we got to Raleigh-Durham, we were stuck on the plane an extra ten minutes because the jetbridge had frozen and could not be moved up to deboard the aircraft.

Donnie and I got my luggage with the help of the world’s worst wheelchair attendant, then picked up the car he’d rented. He drove us from there to Bethesda, which took about five hours even in the teeth of the dying storm. I slept perhaps three hours of the trip. We arrived at 5:30 am, Donnie dropped me off at the hotel, then turned around and headed back to Raleigh-Durham.

I woke up Lisa and Dad, we got sorted out, and headed to NIH around 6:30 am.

The morning was confusing. My hospital admittal orders were dated Tuesday 1/21, and it was Wednesday 1/22. The admitting department couldn’t do anything until someone from the research group changed the paperwork. So I went to my CT scan appointment, as well as getting some bloodwork done in phlebotomy. We went back to wait some more, and were eventually admitted.

After going upstairs to my ward, in a shared room two-bed room, I was told I also had a chest x-ray and an EKG required. Meanwhile, a parade of people came by to see me.

The two immunotherapy doctors handling my case were very glad I’d busted my hump to be here today, as it kept from having to cancel me and reschedule down the road. The social worker called to tell me a room had opened up in the on-site family lodge. Lisa and Dad went off to deal with that. One of the immunotherapy doctors and the Principal Investigator came by to talk about my blog and discuss how I could talk about the study, and whether I would like to be part of an article about the study. The two immunotherapy doctors came back by to talk about the surgery the next day (today, now), which has definitively been planned for my right lung. We discussed the pros and cons of the approaches, and why they’d settled on this one. Essentially, a sufficient amount of tissue to be harvested without the potential entanglements of scarring and adhesions which my left lung would likely present. They will attempt a VATS (laparascopic) approach first, with open thoracotomy as the fallback. Someone from the publicity department came by to have me sign a model release. The Principal Investigator came back with a publicity team to do a photo shoot of he and I for that NIH article. The immunotherapy doctors came back to discuss post-operative timing and TIL growth. The head of thoracic surgery came by with some of his team to review tomorrow’s procedure and have me sign the informed consent forms. One of the thoracic surgery research nurses came back to have me sign some more consent forms about blood transfusions and so forth.

All this while I’m running on three hours of sleep after a travel day that was over twenty hours long.

On the plus side, we had a very nice dinner at Pizzeria de Marco. (I got a hall pass from the hospital to go out.) On the far more plus side, the procedures are going forward as originally scheduled, which makes it all worthwhile.

But whew.

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[travel|cancer] Now in Bethesda, Maryland, and the unlikely way I got here

As of half an hour ago, I arrived at the hotel where Dad and Lisa Costello are staying. Though I was supposed to check into the NIH hospital last night, I will be there around 7:00 am this morning, about 12 hours late. My original flight to DC was cancelled yesterday morning due to weather, and a rather elaborate Rube Goldberg plan emerged in its place.

I’ll let my Tweetstream tell the story…

That doesn’t even cover all the bases, like the poor passenger having the panic attack and my long conversation about Omaha.

All in all, I got about three hours of sleep last night, non-contiguously. Also, I added close to $2,000 to my expenses in additional unbudgeted costs for this whole farrago. If you feel like it, please promote or donate to the Science Fiction Author on Trial (NIH trial, that is!) fundraiser for my NIH collateral expenses.

But I am here. And shortly I will be at the hospital, bushy-eyed and bright-tailed and ready to assist in advancing the cause of healthcare research.

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[cancer|travel] The band is hitting the road

I’m not going to NIH for the next step in my clinical trial until Tuesday, but Lisa Costello and Dad are leaving this morning. We had to make a best-guess when we booked their travel, because our alternative was a very expensive last minute ticket purchase once we knew my NIH travel order date.

So they are off shortly. Mom and I are going to the airport with them. Then I’ll have an unusually quiet couple of days home alone before being off myself first thing Tuesday.

This such a different process than any of my prior treatment cycles. I am in such a different place. And it all just gets harder.

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[books|writing] The January Machine

Back in the 1990s, I wrote my first attempt at a novel. It was called The January Machine. I quote the opening paragraphs of the synopsis I retrofitted some years later…

The year is 2041. Global warming has arrived with a vengeance. Ocean levels are rising, temperature extremes are off the scale, and loss of the ozone layer is destroying entire ecosystems. The United States has fractured under green and Third World backlash, with multiple secessions and a major West Coast earthquake complicating recovery. Meanwhile a prosperous, fascist Poland has risen to world dominance on the ruins of the European Union.

In this setting, human-grade AIs are relatively common, although their application is heavily regulated. In response to draconian AI-control measures, a shadowy AI underground known as the “goldens” seeks civil rights. In addition, time travel, while not possible in 2041, figures into the story from the perspective of the world’s future.

Marcus Sharpton, affiliated with the goldens, stumbles on stolen Polish military data — control codes for the January Machine. The January Machine was a Soviet doomsday project, consisting of several hundred nuclear warheads lining a Mohole, or deep crustal excavation, near a Siberian tectonic plate boundary. When activated, it would create a mega-volcano several hundred times more powerful than the catastrophic eruption of Krakatoa, plunging Earth into a long-term nuclear winter, where superior Soviet arctic warfare capabilities would ensure their military dominance.

I was trying to write a science fiction thriller. I had a lot of fun with it. Frankly, The January Machine is a terrible book from a craft perspective, but there’s a lot of neat ideas and some cool tropes in there, and it’s recognizably a Jay Lake book.

Mother of the Child has been asking for a while if she can have a printed, bound copy of the manuscript so she can re-read the book. My friend SC offered to do the layout and get the project through a print-on-demand vendor. Thus, I give you The January Machine:

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As I’m trying to pull together a fund-raiser to help defray the substantial travel and lodging costs associated with my NIH clinical trial, I’m considering putting a few copies of the book in as premiums. I have some to spare, as the POD minimum order requirements were larger than my immediate needs.

It’s kind of fun to see that first effort from the mid-1990s have a print life, even one so small and odd.


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

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[travel|cancer] Flying home now

Dad, Lisa Costello and I are off to the airport momentarily. Flying home to Portland. We’ll be there about a week before we come back to Maryland for the next steps at NIH.

In the mean time, due to the need for strict health hygiene in the run up to lung surgery, I am going to have to pick up some surgical masks on the way to the airport, and wear one on the plane. I purely hate that. This is also affecting some of my social plans for next week, as I need to be careful about environments and behaviors that would increase my risk of viral or bacterial transmission.

(No hot tub for me, in other words.)

Ah, science. Ah, cancer. At least I’m going home.

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[cancer] In which my NCI adventures conclude, for now

Yesterday was my thoracic surgery consult, with bonus running about and a severely delayed lunch.

Dad, Lisa Costello and I got to the clinic early, but they went ahead and checked me in. A surgery nurse practitioner and a research nurse took some basic history, but the attending physician was not ready to see me yet. I was also advised by the nurse-manager from the immunotherapy group that I needed my pulmonary function assessment repeated due to some questionable results from Wednesday’s test, and that I had a test appointment right in the middle of my thoracic surgery consult. So we left the clinic without seeing the attending and had another pulmonary function assessment.

Apparently some of my numbers from Wednesday were just below a required threshold. The pulmonary tech ran me several times to see about getting me good numbers, then eventually sent me back to thoracic surgery without much comment, but my results in a sealed envelope.

When we got back, we waited about an hour and half to be seen. (This is very unusual in my admittedly brief experience of NIH.) At various points, doctors from both the thoracic surgery group and the immunotherapy group popped in briefly to tell us that they weren’t ready. We got no lunch break, because we didn’t when or how long we could leave.

At my home hospital, such a delay would almost certainly be a resource management issue or an emergency going on. At NIH, I figured it was more likely about the science. As we idled, I speculated that the reason we were idling was that the two teams, thoracic surgery and immunotherapy, were arguing about my eligibility.

I eventually went out and asked if we were still in queue. Shortly thereafter, the thoracic surgery team turned out in force. The attending physician explained that there had been a significant discussion between their team and my doctors from the immunotherapy team. My pulmonary function test (I’m not sure which bit of it) was a couple of percentage points below the cut-off for trial participation. This despite me self-evidently functioning normally in terms of everyday health and physical activity. The pulmonary function did not seem to be an issue at all with respect to the proposed lung surgery. The two teams eventually agreed on a waiver of the requirement.

The net outcome was that I am approved for the surgery on January 23rd, which will harvest tumor tissue for the cell growth process. The infusion process will start 2-3 weeks after the surgery date, depending on how well and quickly my harvested immune cells grow in the lab.

We discussed the surgery itself. There are potential targets in both my lungs. The thoracic surgery teams plans a laparoscopic approach. They are concerned about the left lung, due to my prior surgery there. Even though that is apparently the best candidate tumor, the surgeons felt there is a good chance of adhesions between the lung and the chest wall, as well as other scar tissue, complicating access. There are two smaller tumors in my right lung which are also fairly accessible, and they may prefer to go after those. That decision will be made sometime soon in consultation between the two teams.

If the laparoscopic approach is successful, I can expect a two-to-three day post-operative recovery period. If they have to go open incision, I can expect a four-to-five day post-operative recovery period. That latter is consistent with my prior experience of lung surgery. I will also have a chest drain. (I have to say that having my chest drain removed after my lung surgery back in 2009 was easily one of the most unpleasant somatic experiences of my life. And I’ve had a lot of unpleasant somatic experiences…)

I will be required to report a day early on January 22nd, for another CT scan as well as admission to the in-patient facility that evening. Pre-op prep will start around 8 am on the 23rd. I will be in surgery for two to three hours if laparoscopic, a few hours longer if open incision, before going to recovery.

In the mean time, I have been strictly enjoined not to come down with a respiratory infection or other illness. They will not operate if I am ill.

All of that means I will have to fly back to Maryland no later than the 21st, but I will ask to fly a day or two earlier in order to have a margin of error in the event of flight delays, weather problems, etc.

When we were done in the thoracic consult, they sent us down for an immediate appointment with the preoperative anesthesia group for an assessment. This was the thoracic team being kind, so we didn’t have to change our flights tomorrow and come back Monday. This also meant we still didn’t get any lunch. That appointment was more than a little strange as well, as the anesthesia nurse had no idea what I was doing there. The medical record-keeping hadn’t caught up yet, and I wasn’t in their surgery log.

The nurse took a history, seeming surprised that I didn’t know which lung they were planning to cut open. We talked about my drug reactions, my issues with medical adhesives, and the whole opiate/constipation thing. Eventually we escaped. We had a drive-through lunch at 3 pm, before our 5 pm dinner.

All objectives were accomplished, and we are going forward with the study, but there was a period of time there when I was afraid I was about to be washed out. At this point, I think everything is done except confirming my return travel date.

Wish me luck.

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[cancer] Field notes from Cancerland, further adventures in Maryland

NIH tech support

Yesterday morning, I got a call from NIH tech support. It had been on my to-do list to call them, as I was having trouble accessing their patient portal view the Web. They had noted the failed access attempts in the log, and the tech support person had tracked down the problem and solved it prior to calling to inform me of all this. That is literally the first time in my life I’ve gotten a proactive call from a tech support team about a issue I was having personally. (I’ve occasionally been on the receiving end of calls or notifications of system-wide events, etc., as we probably all have.) Tell me again how the government can’t do anything right?

Symptoms

I had another cold flash Tuesday evening. We intercepted it at the start and headed off the worse, but it still was no fun. Likewise, the last few days I’ve been struggling again with fatigue bordering on the pathological. And the area around my liver has been aching a lot.

Likely as not, this is all just physiological manifestations of stress. Things are going quite well here at NIH, but it’s an enormous amount of information and a lot of tests and procedures all happening at once. Dad says I made it through last week on adrenaline. I guess this is the crash week. However, my oncological hypochondria is in rare form. And in truth, we are getting into the window where I would expect to begin seeing overt physical symptoms of my terminal decline. My palliative care doctor recently suggested that the cold flashes could be from “the evil humors of the cancer”, for example.

So, yeah, the world is running down.

Procedures

Yesterday at NIH I had an echocardiogram and a pulmonary assessment. I can report that I in fact have both a heart and a brain. Informally, the word was nothing unusual seemed to be present on either test. I will know more formally on Friday, I think, when I see the thoracic surgery group.

Today I have the leukopheresis. This starts at 7:30 am with a surgeon implanting a dual-lumen Hickman catheter in my femoral artery. It pretty much goes downhill from there, I suspect. They’ll be harvesting leukocytes to facilitate the treatment regimen which should commence in early February.

I must confess to a high degree of anxiety regarding this procedure. It’s one I’ve never had before, and I’m not really looking forward to having the catheter implanted. This uneasiness is just my backbrain ticking over, I know, as I’ve experienced far more painful and dangerous things in the clutches of the medical system, but I’m still having a tough morning.

The study I am enrolling in

I still don’t know what the limits are on what I can discuss, but this is some pretty cool science and cutting edge technology. I’m excited to be a part of it. I’ve asked for guidance on how much I can talk about the science, because a lot of you reading will likely be fascinated to hear about it. I will be formally consented tomorrow morning, which puts me in a formal patient relationship with NIH. This has various implications around logistics and timing. More when I can.

The cost of doing this

NIH will pay for my air travel to and from Portland for the different portions of the study. I expect to fly home 1/11, and back around 1/20 for thoracic surgery to have a wedge resection performed on my left lung. Then home around 1/28, and back around 2/5, for a much longer stay with a basket of treatments. As almost all my time here will be in-patient, I don’t have direct housing expense for me. But Lisa Costello and Dad are coming and going with me. The precise air travel dates are unpredictable, and are set somewhere between two days and a week in advance for each arrival and departure, separately, depending on various clinical factors. If you know anything about airfares, you know how utterly ghastly this is from a cost perspective. On top of that, their housing for most of January and February (I’ll be in the hospital 4-5 weeks overall), and our incremental expenses. It’s a mess.

Once I have a better handle on how I can talk about the science, I will probably work with a few folks to put together a science-driven fundraiser. As my recent posts on the costs of cancer hopefully made clear, if you’re in my position, you bleed money. I’ve about tapped out the funds from last January’s Sequence a Science Fiction Writer fundraiser, with my profound thanks to everyone involved. More to come on this as well.

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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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[photos|travel] Self-directed patient man goes to Washington, DC

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