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[cancer] A bit more detail on my oncological hypochondria

I’ve mentioned numerous times enjoying what I sarcastically refer to as “oncological hypochondria”. Meaning, experiencing every somatic change or irregularity in my body as if it were a sign of impending trouble on the cancer front.

This is less of a joke than it used to be, given that I am probably entering my terminal decline right now. It used to be that when I had a problem, I wondered if that meant the cancer was returning. Not so much any more. The disease is back with a pervasive, terminal vengeance. Now when I have a problem, I wonder if that means a step in my irreversible slide toward death.

Specific things that are going on right now:

Oversleeping — I am sleeping more than I used to. That’s normal for any post-operative patient, and I am recently post-operative. It’s also one of the specific markers of terminal decline, at least given my most likely failure modes. I cannot judge whether the oversleeping is one, the other or both.

Reduced energy — For example, Lisa Costello and I yesterday took the Metro from Rockville to DC to have lunch with her Day Jobbe workgroup, which is based in downtown DC. Two forty-five minute Metro rides and twenty minutes of walking back and forth in the cold absolutely wiped me out physically and mentally for the rest of the day. As with the oversleeping, this could be a post-operative issue, or a harbinger of terminal decline, or both.

Kennel cough — I’ve got a very odd little cough these days. It’s not connected to a sore throat, post-nasal drip, or any sign of impending infection. I just cough, a tiny, little apologetic thing like a baby’s cough, that often comes in pairs. My best guess is that I am producing more saliva than I used to, and it’s draining into the back of my throat. What the hell does this mean? I don’t know. Cue more worry.

Chest pain — Ok, let’s get real. I had a right thoracotomy less than three weeks ago. Of course I have chest pain. But the pain has settled in a spot below and to the left of my right pectoral. Which was in no way directly affected by the surgery. Likely this is a knot of referred pain, perhaps the trunk end of the nerve on that rib, but it’s persistent and annoying, and seems to be happily outlasting the receding pain from the surgery site itself. (Sites, actually, since I had VATS surgery, meaning there are five small but distinct entry and exit wounds.) What does that mean?

Appetite — My appetite continues irregular. I eat a very modest breakfast, tend to eat a full lunch or close to it, and eat a very modest dinner. I’m pretty sure my calorie intake is below target now, though we don’t have a scale in the hotel, so I can’t track any weight swings, which for me based on experience are known to be a pretty good proxy for calorie intake. Like extended sleep hours and daytime lassitude, reduced appetite and weight loss are symptoms I’ve been told to expect in the process of terminal decline.

In a sense, this is all dithering. I’m dying. That is a thing which is true. What we’re up to here at NIH might buy me some time, maybe months, maybe a year, though more likely not. It won’t cure me. My body is under assault from within, and at some point this endless stubbornness of mine that has kept me going will collapse under that assault. Still, I watch the signs, wondering which twinges are just middle age and hard use, and which twinges are glaring idiot lights on my personal dashboard of death.

Weirdly, some days I just want to get on with the business of it. So, weirdly, some days I almost hope for the worst.

[cancer] Field notes from Cancerland, gearing back up for the hospital edition

Where’s Jay

I am back in Rockville, MD, with Lisa Costello and Dad, waiting for the call to go back into the hospital. We had a lovely week in Ocean City. At this point, given the extra step of the mutation-driven selection of my TIL cells, I don’t expect to go into the hospital before next week, but anything is possible.

The weather outside is frightful

Not really. Though it’s been mighty cold almost the entire time we’ve been in Maryland, including the December/January trip for study enrollment. Not one, but two polar vortices. Meanwhile, back in Portland, snow accumulation yesterday was about 10 inches. With up to an inch of ice atop that by tonight thanks to freezing rain. This in a metropolitan area with no snow plows, salt or sand trucks, or (except for the winter sports people) much experience in snow driving. [info]the_child has been home from school since midday Thursday, and I’m pretty sure is getting cabin fever.

Restarting my routines

This morning I spent ten minutes on the recumbent bike in the hotel gym. That’s the first time I’ve exercised (other than incidental walking around) since the surgery. My legs and lungs were doing fine, but I was starting to get pain in my right chest, associated with the surgery site, so I stopped. I also resumed my formal meditation practice this morning, albeit at a shorter time than usual. So I’m getting back to what passes for normal these days. Until the hospital interrupts it all again.

The chest pain

No, not in the heart attack sense. Post-operative pain and discomfort in my right chest. The actual surgery wounds vary from inert to uncomfortable to mildly painful, depending on my body posture and activity level. Lying in bed reading Facebook, they don’t bother me at all. However, the knot of pain in my rib (number six, I think) persists with annoying consistency. The pain knot isn’t actually at any point directly affected by the surgery. I believe, based on my prior experience of my left thoracotomy back in 2009, that I’m experiencing referred pain from the surgery site.

To be clear, everything I have now is low-grade pain, falling somewhere between discomfort and two or so on the pain scale. Irritating and distracting, but not debilitating. Given that I’m only seventeen days out of surgery, that’s just fine with me.

The intersection of surgical recovery and terminal decline

All of the above being said, my oncological hypochondria persists. I should be moving along nicely into my terminal decline about now. So I wonder, is this chest pain a symptom of larger issues? Am I not going to heal completely from the surgery due to my body’s depleted ability to respond? Why is my GI doing [whatever it’s doing today]? I’ve been oversleeping, by my standards, but I know that’s perfectly normal for post-operative recovery. I keep wondering if I should be doing better than I am. It’s a lovely place to be, inside my head.

Attitude

I’ve had a number of occasions to recount my medical history recently, ranging from abbreviated casual conversations to my recent visit to the urgent care center in Ocean City to have my stitches removed. Almost without exception, people compliment me on my attitude. You know what? My attitude sucks. It’s terrible. I’m always torn between rage and grief and fear. But I don’t wear that around. I don’t lead with it, and I rarely follow up with it. Not because I’m suppressing or in denial. Rather, because angry and depressed is no way to live. So I choose otherwise. But the hard, bitter reality is never far from the surface. Whenever someone tells me I have a good attitude, I can feel the monster flashing a fin.

Still looking at death, every day

In the car driving from Ocean City to Rockville yesterday, Lisa Costello talked about what we refer to as “cancer thoughts”. Mine and hers, though mostly mine. It’s not a frequent topic between us. For one thing, most of what needs to be said has been said. For another, it’s a godawful buzzkill. Most of the time you just have to live your life. Even now, when I’m a giant sack of tumors with a punched ticket, we still have to live our lives. But it’s always there. Breathing in my ear. Freezing my heart. Talking to me in the twinges and cramps of my body. There is no escape.

I miss my willful innocence.

[photos] The Delmarva Peninsula and Wallops Island

Yesterday I drove down the Delmarva Peninsula to NASA’s Wallops Visitor Center, plus a quick swing through Chincoteague. I’ll observe that the Virginia end of the peninsula is much more economically distressed than the Maryland end, judging by the abandoned housing stock, the desolate small town business centers, and the general depopulation. The whole area had something of a Blair Witch vibe. Also, Virginia doesn’t seem to be able to pick up their roadside litter nearly as effectively as Maryland, which is a passive testament to constrained resources.

Still, it was pretty, if a bit strange.

The Wallops Visitor Center was fun and kind of cute, basically a small and slightly random museum to NASA operations with an understandable focus on the site’s role. Sadly for my goals of the day, there’s no longer any public access to the Mid-Atlantic Regional Spaceport, or anywhere within line of sight of it, except for a little bit of on-the-horizon visibility from the Chincoteague causeway.

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Abandoned house in Horntown, VA.

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Yard in Horntown, VA. Note the egret stencil spray painted on the side of the shed.

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Side road near Horntown. This looked unaccountably spooky to me.

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Gulls at Chincoteague. I didn’t have the right camera with me, so it doesn’t come out well, but this picture has a lot of gulls in it.

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Abandoned drive in movie theatre, West Ocean City, MD.

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Observation deck of the NASA Wallops Visitors Center.

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Rocket on static display at the NASA Wallops Visitors Center.

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Another rocket on static display at the NASA Wallops Visitors Center.

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Spherical movie screen at the NASA Wallops Visitors Center.

Photos © 2014, Joseph E. Lake, Jr.

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.

[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?

[travel] One of the perils of hotel living

We’ve been living in the Best Western in Rockville, MD lately, though in fact today Lisa Costello and I are decamping for Ocean City, MD for a quiet week before plunging back into the busy-ness of NIH and my clinical trial. But given my career of the past fifteen years or so (both Day Jobbe and writing, come to think of it), I’ve spent probably 1,500 or 2,000 nights in hotels in that time. I’ve experienced almost everything you might expect to in that time.

This morning one of the perils of hotel living was brought back to me in force. At 5:30 am on a Saturday, the alarm in the room next door went off at full volume. A series of beeps, followed by the jangle of a radio not quite tuned in properly. Loud enough to wake me from a these-days-rare sound sleep. After a couple of minutes, I got up and investigated. It was even louder in the hall.

Sometimes people check out and leave the alarm turned on. So I called down to the front desk and got no answer. I got dressed and took myself down to the lobby, where I found the night clerk and spoke to him. He said someone was checked in to the room next door. A few minutes later, heard loud knocking.

That damned alarm blared from 5:30 to 6:12 before cutting out. Later, when I went down to breakfast, I could still hear the radio through my neighbor’s door, though it was no longer blasting through the wall between us.

Hearing impaired? Ill? So drunk they couldn’t react to their alarm? Anti-social idiot? I’ll never know.

But yeah, this is the glamor.

[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] 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.