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[cancer|culture] The hour and manner of one’s passing

I don’t have a lot to add to what’s already being said about the death of Philip Seymour Hoffman. He was a successful actor and director who was still underrated, in my uninformed understanding of Hollywood and Broadway. He took brave and frightening and silly roles, sometimes all at once, and inhabited the screen with a certain everyman awkwardness that was both endearing and familiar.

But death, now death has become a close friend to me this last year. Riding on my shoulder, always at my side, hearing with my ears, speaking with my tongue, thinking with my thoughts. Even as I write this I am lying in a hotel room bed on a heated mattress pad with my right side wrapped in a heating pad, every breath a pain, every movement an ache, each of those tiny, sharp, endless crystal moments a reminder that barring a medical breakthrough of almost literally miraculous proportions, I will be gone in a matter of months and weeks.

As it happens of course, we’re working on that medical breakthrough. That’s why the bed I am lying in happens to be in Ocean City, Maryland, 2,950 miles from my home in Portland, OR. My crowd-funded Whole Genome Sequencing drives a realtime experiment in mutation-based selection of TIL cells happening on a lab bench not far west of here at the National Institutes of Health in Bethesda, Maryland. I am choosing to live, in pain both physical and psychic, for so long as I can. I am perhaps too stupid and stubborn to die any sooner than I might.

Yet, I say this as if I have any direct control over the ways and means of my cancer.

As a matter of philosophy, I don’t oppose what we somewhat ironically call “recreational drug use”. As a matter of philosophy, I support a right to die for those who feel the need to do so. That would almost make me a Libertarian, at least back in the days before that group became Tea Party lunatics and lost all moral and intellectual credibility.

But I strongly oppose harm to others. In any form. Medicating yourself to death, as Hoffman appears to have done (whether accidentally or with a purpose) slays a portion of the hearts of everyone who loves you.

I know this, as I know that my own increasingly overwhelming mortality slays a portion of the hearts of those who love me.

As I’ve said in several other contexts recently, when death is being forced upon you, as it is with me, then life becomes all the more precious. There’s always a tomorrow, no matter how bad today looks.

That’s not me speaking in cliche. That’s me speaking as someone who spent my teens and twenties so gripped in chronic clinical depression that I found it necessary to try to take my own life, and wound up in considerable treatment because of that. I was lucky enough to have a chance to walk it back, and go on to have a life and loves and a child and writing career.

My chances to walk it back are almost gone beyond recall. The hour and manner of my passing is being dictated by genetic inevitability and the toxic tumor-children of my body.

Philip Seymour Hoffman will never have a chance to walk it back now. The hour and manner of his passing has been set and sealed, seemingly by his own hand.

And that makes me sad. For him. For those who loved him in his everyday life. For those among us who admired him from a distance.

Because one of the things that makes me saddest for myself is that there’s always a tomorrow, but soon enough I will never again see the sun rise. Neither will Mr. Hoffman.

The hour and manner of one’s passing is always the last today.

[links] Link salad misses Philip Seymour Hoffman already

His Friends Know Him as Petroswickonicovick — On names and naming traditions in Brazil. (Via Dad.)

Ashes to Ashes, but First a Nice Pine Box — On building your own coffin. (Via Reynardo.)

Nine Treasures — Mongolian folk metal. Yo. (Thanks, I think, to [info]danjite.)

In China, ‘Once the Villages Are Gone, the Culture Is Gone’ — Changes in culture. (Via Dad.)

Lunar Time Lapse Panorama including Yutu Rover

How the Media Missed the Story of the Millennium: One Climate Blockbuster after AnotherThe fact that 97% of scientists who have weighed in on the issue believe that climate change is a human-caused phenomenon is not a story. That only one of 9,137 peer-reviewed papers on climate change published between November 2012 and December 2013 rejected human causation is not a story either, nor is the fact that only 24 out of 13,950 such articles did so over 21 years.

Hillary Clinton: ‘fun to watch FOX when it’s someone else being blitzed’

The Cheapening of American Politics: Why did Obama reward O’Reilly with an Interview?Fox cheapens our lives by reducing respect for human rights. It pushes homophobia, the restriction of women’s choice, Islamophobia, xenophobia (irrational fear of “foreigners”) and white and Christian triumphalism. It is hypocritical, in that it slams Muslims and Arabs while being 6% owned by Saudi billionaire al-Walid Bin Talal.

4 Ways Tunisia Is Now More Progressive Than The United States — (Via [info]danjite.)

Go Ahead, Try it That Way”We’re in this mess for a reason, and it’s because GOP leaders either doesn’t understand the conservative ideal (which is why they can’t articulate it), or they do understand it and simply don’t like it.” If that’s true, it’s probably the only thing “GOP leaders” and the American people have in common.

?otD: Life is precious and short enough already. Why go too soon?


2/3/2014
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 8.5 hours (solid)
Body movement: n/a (post-operative)
Weight: n/a (traveling)
Number of FEMA troops on my block inventing polar vortices: 0
Currently reading: n/a

[cancer] Update from the latest CT scan

In all the busy-ness of surgery last week, I failed to note the results of the pre-op CT scan.

Basically, no new metastases since the previous scan, and the growth rate of my tumors has slowed a bit, to a doubling rate of around 12 weeks versus the roughly 8 weeks previously noted.

It’s odd what counts as good news these days. I live in horror, I will likely die soon in horror, but this scan somehow insensibly cheers me.

[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.

Creative Commons License

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

[cancer] Field notes from Cancerland, post-operative recovery edition

The surgery

As previously indicated, the surgery went very well. There were no complications in the OR, and two tumor masses about 1.3 mm each were sent off to the TIL lab for extraction, and eventually, a great deal of expansion growth. With respect to thoracic surgery team, they were able to successfully complete my surgery with the VATS procedure. This has made my post-operative recovery much less brutal than previous procedures. Even the GI restart has gone better, presumably because of the lower levels of anesthetic required for the procedure. I am very happy with that outcome.

The TIL cell growth

Though it’s early days yet, we have received strong positive reports from the TIL cell lab. The target cells are present in the hoped-for quantities within my extracted tumor tissue, and process of enticing them out for further growth is going quite well so far. This doesn’t have any particular predictive clinical significance, but is something nice to note.

Whole Genome Sequencing (WGS) and TIL cell selection

Dr.s Klebanoff and Klemen, who are managing my participation in the study, inform me that they are making good use of of the WGS data. Having a map of my mutations is allowing them to filter the TIL cells by affinity, producing a truly personalized immunotherapy poocess here. Again, my thanks to everyone who supported that fundraiser last year. It continues to pay dividends.

Post-operative complications and getting out of the hospital

We had a couple of minor-but-annoying post-operative complications. For a while I was running a fever which climbed into the danger zone, but climbed back down again. We also had issues with lung drainage and my O2 saturation. The O2 sat dropped below 80, which caused much excitement in certain quarters. I seem to have since recovered. Based on eventual post-operative healing, I should have 95-97% of my original lung capacity. Subtract from this whatever effect the dozen or so tumors in my lungs are having and I should still be oky.

All of which is to say, I’m probably fit to be discharged today, but they’ll want to recheck my lung function, recheck my infection status, and go over the state of my surgical wounds and any requirements for wound care.

Having the chest drain pulled out

This is the second time I’ve had a chest drain pulled out, and I remain convinced that is is my least favorite somatic experience, ever. The doctor was patient and let me take a dose of Lorazepam to chill out before he came in and did the deed. My dad watched, and tried for some photos without getting in the way.

photo 1

Telling healthcare professionals things they don’t want to hear

I’m a “hard stick”. To a phlebotomist or to an IV or chemo nurse, that means someone with difficult to reach veins that don’t cooperate well. Unfortunately, a great many patients with perfectly normal veins consider themselves “hard sticks”, because of bad past experiences, a dislike of needles, a desire to be treated more carefully than average, or some other reason. So when you tell someone you’re a “hard stick”, they tend to smile and nod and go about their business, because they’ve heard it all before.

Some years ago, an exasperated phlebotomist ignored my declaration that I was a “hard stick”, then poked about five dry holes in me before telling me with some surprise that I was indeed a “hard stick”. This was not news to me, I pointed out. They coached me how to explain to a phlebotomist in very specific terms that I was in fact a “hard stick”, truly a patient with difficult veins, and by-pass the natural cynicism that declaration engenders. It’s been useful.

I’ve since found another medical issues where so many people call it out to clinicians that clinicians essentially ignore that as background noise until the evidence presents itself. One is that I experience profound constipation from even relatively minimal dosages of opiates. Everybody gets constipated from opiates, so this statement from me tends to be ignored with a patronizing smile. No, really, I say, my personal best is nine days post-operative with no bowel movements, followed by a bounceback admission to the hospital to be treated for pathological constipation. That sometimes, but not always, gets their attention.

This time at NIH, I hammered on this point so frequently and so hard that I eventually got a low-opiate anesthesia and pain management plan for both surgery and post-operative recovery. When they finally took me off the epidural yesterday, the nurse told me she had my hydromorphone ready. I refused her, which startled her so much I wondered how many other patients had ever refused hydromorphone. Instead, we managed pain control with Toradol, gabapentin and Tylenol.

Meanwhile, we were pouring quite a few laxatives down me, and I was eating meals that typically cause me to have heavy, loose bowel movements. Yesterday afternoon, that dam broke with a vengeance, producing a truly astonishing amount of stool. There have been sufficient encores for us to conclude this is the real thing and my GI is back on line.

Next steps at NIH

I’ll probably be discharged from the inpatient facility today. I would expect a follow or two over the next couple of days. Our next formal involvement is coming back in a week ahead of the completed growth of my personalized TIL cells. The WGS-driven selection process may add some time, as in effect, they’ll be designed a new section of the protocol for that. I’m the first patient who’s ever com through the door with that much data.

We have asked for a tour of the TIL cell lab this week, so I can write about it here. That seems to be in train, but with no dates yet.

The earliest I’ll be back here for the next phases of treatment is a little less than two weeks. It could be three or more.

The fundraiser carries on even in the face of success

The Science Fiction Author on Trial (NIH trial, that is!) fundraiser made goal. Thank you! The expenses are what they are, now and later in the year. To respond to the interest from you guys, we are working on some stretch goals. Keep an eye out.

[cancer] The NIH Fundraiser – stretch goals?

Yesterday, the Science Fiction Author on Trial (NIH trial, that is!) fundraiser made goal.

Thank you very much. This helps meet the costs for Dad and Lisa Costello to be here in Maryland, as well some of my incidentals.

One of our prize sponsors suggested we set some stretch goal prizes. I’m going to let them worry about that with the organizer, Shlom Ster. It would be nice to cover the $2,000 or so in extra costs from my last minute travel fire drill. Any money beyond that will go into my healthcare fund for future needs here at NIH or at home.

But really, to do it yesterday, while I was out for the count for surgery and recovery… You guys are awesome, and I love you. Thank you so much.

[cancer] Surgery and the TIL harvest

Yesterday’s surgery was minimally invasive. Using the VATS technique, the thoracic surgery team were able to resect the needed tissue with a relatively modest impact on my physiological well being. There was no need to open me up. This in turn means that the surgical insult to my body is much less than it was during the 2009 wedge resection of my left lung, where my third and fourth ribs had to be spread for full access. That healing took about a year.

Yesterday afternoon while I was in the ICU, the immunotherapy doctors came by and said that their preliminary assessment of the resected tissue indicates a sufficiently robust harvest of the targeted TIL cells that we can proceed with the next steps of the immunotherapy process. This is very good news indeed.

The doctors also mentioned the Whole Genome Sequencing data has been very helpful in refining cell selection, with improved chances of good treatment outcomes. As Dr. Klebanoff explained, they would not normally have sufficient lead time to do such a study before beginning the TIL cell therapy. They’re quite excited about having this data to guide their work.

That I can offer such data to this team is down to you guys, and the fundraiser from last year. You’re helping the science that might help me, and will certainly help future cohorts of cancer patients.

Thank you. Thank you very much.

[links] Link salad knows that fire is the devil’s only friend

Science Fiction Author on Trial (NIH trial, that is!) — The fundraiser for my NIH collateral expenses continues. If you haven’t already done so, please do check it out and pass the word.

The London ArrayThe world’s largest wind farm has been planted just off of the mouth of the River Thames. Oh, cool photos.

Hello World: Hibernating Rosetta Comet Probe Awakens

Are We Alone? NASA’s 30-Year Goal to Answer Astrophysics’ Greatest Question “For the first time, we will identify continents and oceans—and perhaps the signatures of life—on distant worlds,” says NASA in its 30-year vision for astrophysics.

Sex abuse files on 30 Chicago priests going publicAttorneys say the documents will show that the archdiocese concealed the abuse for decades. That’s not what Jesus meant in Matthew 19:14.

Wait. Texas Is Spending HOW Much Money to Violate the Constitution? — I love those Constitutional absolutists with their unswerving loyalty to the letter of the document. No, wait that’s the Second Amendment. The First Amendment is entirely fungible.

Executives quit after massive South Korea data theftThe alleged theft of 104m credit card account details by a lone security contractor has left thousands of South Koreans forming long lines in bank branches to cancel their cards, as three dozen financial executives resign in disgrace. Can you imagine American financial executives doing such a thing?

A Wall Streeter comes clean — This is fascinating to the point of alarming.

From ‘I don’t want any part of Obamacare’ to ‘It’s a godsend’ — The transition from ideological hatred to the hard realities of living with serious illness.

NSA-o-Matic! — Your automatic NSA spin generator! (Via David Goldman.)

If Dr. King was in Fact a “Republican”, I Too Can Entertain Some Fantasies: Was Dr. Martin Luther King Jr. a Space Alien? If Dr. King was a Porn Star, What Would He Have Chosen For a Stage Name?Dr. King would be disgusted with the Democratic Party, as it is just the more Left-wing of a two party political system that is stridently conservative, and neither serves the public interest nor the public good. Moreover, Brother King was not beholden to either political party. Dr. Martin Luther King Jr. held the Republicans in especially low regard. (Via [info]threeoutside.)

?otD: Where were you the day the music died?


1/21/2014
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 6.25 hours (solid)
Body movement: 30 minute stationary bike ride
Weight: 238.8
Number of FEMA troops on my block BENGHAZI! BENGHAZI! BENGHAZI!: 0
Currently reading: n/a (chemo brain)

[cancer] Update on the Science Fiction Author on Trial fundraiser

Science Fiction Author on Trial (NIH trial, that is!)


Thank you very much to everyone who has donated to my fundraiser in support of my costs for the NIH study I am now enrolled in. Thank you as well to everyone who has provided promotion, cross-promotion and signal boost. And finally, thank you so much to those who have donated premiums to the fundraising process.

As of my writing this post on Monday morning, we are at almost two-thirds of goal. I cannot express my gratitude enough. These days, my life erodes in so many ways, growing smaller and smaller. At times like this, I am reminded how good my life still is, how large each of you help make it be.

The fundraising site was updated over the weekend with some terrific premiums. Kevin J. Anderson, Prime Books, and Clarkesworld Magazine have made generous donations for contributions at given levels. I’ve put a dozen copies of my private printing of The January Machine, to be awarded by random drawing. I also have something cool forthcoming for all donors at any level, though we’re not quite ready to announce it, and there’s a couple of more really neat things in the pipe as well.

Give a nod to Shlom Ster for pulling this together. And think of me this week, as I literally dedicate myself to science. I’m in for some difficult and painful times in the very near future.

See my original post here for a bit more background on the fundraiser, if you are interested.

[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.