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[links] Link salad is surprised to see the Year of the Horse

2013 Locus Recommended Reading List — Including my Audible.com novella, “Rock of Ages”.

Editor’s Desk: Support Jay Lake — Neil Clarke of Clarkesworld talks about me and my medical travails.

Are You Pooping Wrong? — (Via David Goldman.)

Henning Mankell: chronicler of his own declineAfter years of exploring Sweden’s darkest fears in his fiction, the creator of Wallander faces his own anxiety after being diagnosed with cancer. He will now chart his illness in a newspaper column. (Via Cora Buhlert.)

Smeared Skies Made from Hundreds of Stacked Photographs by Matt Molloy — “Timestack”. Now there’s a word. (Via Daily Idioms, Annotated.)

Mars and Orion over Monument Valley — Mmmm.

Brain-Dead Texas Woman’s Family May Have To Pay For The Cost Of Keeping Her On Life SupportIt’s not guaranteed that Texas will actually change the arcane state law that allows hospitals to override women’s end-of-life wishes if they are pregnant. And it’s unclear who exactly will be responsible for paying the medical bills that resulted from Muñoz’s hospital stay, which stretched on for about nine weeks.

Inside the Apocalyptic Soviet Doomsday Machine — Shades of my novel The January Machine. (Thank to [info]danjite.)

Reagan and the occultRonald Reagan had an interest in lucky numbers and newspaper horoscopes. Less known is that a certain scholar of occult philosophy had a lifelong influence on the 40th president of the United States. Uh, yeah. (Snurched from Slacktivist Fred Clark.)

Even the top 1% is disgusted by Tom PerkinsHowever, on the issue of economic equality in particular, I must part ways with Mr. Perkins as well as some of my other colleagues in the business community who subscribe to his simplistic, almost childlike point of view regarding the factors that are driving the emerging debate on inequality.

Christie Asks for Public’s Patience While He Comes Up with New Story — Heh.

?otD: What is your birth year in the Chinese system?


2/2/2014
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 7.0 hours (fitful)
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

[travel|cancer] Maryland, My Maryland

Dad and Mom (who has been visiting) are checking out of our Rockville hotel today. Lisa Costello works today, but tomorrow we’re off to Ocean City for a week of quiet. We’ll back here in Rockville a week from Saturday. I expect to be called back into the NIH possibly sometime the following week, possibly not til the week after.

Originally it would have been early that following week, but the business of using my Whole Genome Sequencing data to provide genetic screening of the TIL cells is adding to our wait time.

Meanwhile, my side hurts a lot. Some ill-advised movement the other day set my recovery back a bit, and I have a wicked, painful knot in my chest which I’m pretty sure is a result of me favoring the area around the surgery wound. Still I am healing well enough that when I sneezed twice this morning, it was not mind-shattering agony. And I am finally able to sleep a bit.

Progress is made. Tomorrow, it will be progress headed eastward to the shore.

[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] Recovering from surgery

As surgeries go, this most recent thoracotomy has been by far the least difficult of my six resections. Which is an entirely relative statement. Given my extreme aversion to opiates, my only pain control is a combination of Tylenol and ibuprofen. I twice refused opiates as a takehome medication, to the amazement of my NIH medical team, but I’m utterly serious about staying off opiates wherever possible.

And yes, it hurts like crazy.

Of particular annoyance is the fact that I’m mostly a right side sleeper. The resection of my left lung in the fall of 2009 left me with a permanent, painful knot on that side of my body. I’ve not been able to sleep comfortably on my left side since then. I’ve never been a back sleeper, except when very ill or heavily medicated. My right side is now impossible to sleep on due to the healing surgical wounds.

The astute reader will note this leaves me with a paucity of comfortable, or indeed, even uncomfortable-but-viable, sleeping positions.

Not sleeping is not so good for the healing process of surgical recovery, nor of health in general. Of such small challenges is life made.

Today we have to deal with a minor mechanical problem in the rental car, and possibly go shop at Target. I need to catch up on a week’s worth of mail and email, mostly of the paying-the-bills variety. Mom flew into town yesterday and is visiting friends, but Lisa Costello and I are having dinner with her and Dad tonight.

Life goes on. Just painful and exhausting.

[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] Still in the hospital

I’m still in the NIH hospital. (This is not unexpected.) I still have a drainage tube coming out of my right lung and the through the chest wall. I still have an epidural in my mid-back. I am on supplemental oxygen. All of this makes getting out of bed to go to the bathroom or take a walk rather much of a production.

We’ve had a couple of side effects. I have an air bubble in my chest, which is impairing my return to full lung capacity. Also, I ran a fever yesterday which produced some worry. And finally, there’s the ever popular post-operative constipation.

They may remove the drainage tube today. That depends mostly on lung function and the how much the rate of drainage has declined.

Progress is being made.

[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.

[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.