Sunday, July 27, 2014

 It Might Get Messy

There are two conceptual foundations solving problems. The first one—most important, but also most difficult and often impossible to implement—is to invoke a metasolution. A metasolution changes the basic rules of the game. You step back from the immediate issue at hand, identify a completely transformational formulation of the problem, and go right ahead and do it.

Classic example of a metasolution is when Captain Kirk reprogrammed the Star Fleet Academy software to save his ship in a test intended to be impossible to survive. A more mundane example? Maybe your house is on a wooded lot, little sunlight reaches the soil surface, and what turf grass there is is scruffy and sloppy. One solution might be to lose the grass completely and plant native, shade-loving perennials in a dense English-style garden. Bang! You know longer have to deal with the problem of ephemeral landscaping. You’ve fixed it so it is no longer a problem!

The alternative to the metasolution is the slogging solution. This is by far the dominant method of problem solving. It’s the one where you stare at the snapped off bolt head, sigh, and realize you’re going to have to re-tap the bolt stem in place. While at the same time you’re wishing some magical fairy would show up to extract the bolt, accept a small gratuity, and let you get back to work. 

I find myself increasingly drawn to an analogy between war and medicine. On its face, this is clearly ridiculous. Wars are agglomerations of systems, all intended to kill, injure, or break anything that gets in the way. Medicine in the broadest sense is the benign engineering end of science. Engineering also produces high-spec infrastructure for freeways and bridges allowing us to travel, communicate, and place goods and services where and when needed. And those orders, of course, reflect not ony the he stream of doctors and nurses, but the bridges, rails, roadways and runways that let us function as a coherent society. 

Unfortunately, despite a depressingly short string of hopeful Hollywood hype pushing various cancer “miracle drugs”,they don’t actually work. Any statistical alteration in tumors is related directly heavy doses of such medications, not to homeopathic magic or some cramped up djinn released from his bottle early. 
But let us not get ahead of ourselves here. 

Things are about to get incredibly technically complex as we move into what will now be the third round of drastic cancer treatment. Suffice to say, I’m gonna feel like shit, and the odds on meaningful recovery are low. Why, that’s the perfect format for a weblog like this! So I’m letting you off easy this week. But as things move to what is surely going to be the front line and leap out of the muddy trenches, screaming the whole time, I’ll be taking  you all along with me. Get ready to go to hell in a bucket baby. But at least will be able to enjoy the smegging ride! 

Remember I love you. And I’m looking forward to seeing as many of you as I can over the coming months. I’m gonna look like an aged, decrepit old plague.But my brain’ll be similn’ every I see the kids reading a book from the shelf, or looking under a log for a ringneck snake. That’ll mean my work here is almost done. And that I’ll see you on this side of the, and  few pence later, on the far shore.

ROCK AND SMEGGING ROLE, EVERYBODY!!!

Saturday, July 19, 2014

It Might Get Messy

Well. It’s been an all-singing, all-dancing, three-ring circus of nonstop fun here in Cancer Land (trademark, copyright) this week. If you’ll recall about a year ago, the radiation treatments had once again kicked my ass and had me in the hospital for several days of recovery. This time I’m on a short rotation—just 5 days of radiation, and a few minutes of high-dose treatment per. So, even though I’ve been mildly radiation sick, it hasn’t been too bad.

Fast forward to Tuesday last. As we’re walking in for the treatment, I suddenly get severely dizzy. Lower myself to the floor. Cathy races to the desk, who calls the Rapid Response Team. Who, to their credit, show up with a dozen elite EMT types with full gear in about 3 minutes. By which time I have vomited all over the hallway and am in very bad shape. They whisk me to ER, which whisks me back to the treatment floor I just left on Saturday. Where, today, the following Saturday, I remain. I will be getting out of here tomorrow. But it’s been both an uncomfortable and entertaining week.

First, a sequence of my “deep” doctors—surgeon, cancer specialists, radiation specialists, lung specialists, etc. come by. They (sensibly) aren’t too worried about the minor contretemps of a hospital stay for barfing in the hallway. They continue planning my treatment, which next week moves from radiation to chemotherapy. In this case, the chemo drugs are new—I haven’t been exposed to them before. Hope being, of course, that neither have my malignancies, and the new drugs will kick serious cancer ass. Given how aggressive this cancer is, I have my doubts. But anything is worth a try.

Now, they also manage to complete the diagnostics on my overall condition. This is not pretty. Turns out my posting last week was way over-optimistic. The 4 liters of fluid they drained from my lungs went to the lab for analysis. What came back is bone-chilling. The fluid is filled with malignant squamous cells from the mucous membranes of my lungs. In other words, the cancer is NOT confined to the pleura of my chest cavity. The cancer is rampant in my lungs. 

I assumed on hearing this that it was a rapid death sentence. Which it could be. But again, the senior docs aren’t overly perturbed. They haven’t changed their estimated time-to-death. Dr. H gives me 3 to 24 months. Which is in the ballpark of Dr. S’s 6 to 12 or 13 months. There is a lot riding on the chemotherapy. If it is successful, my time is longer. If it’s a bust, so am I. 

Meanwhile, here I am in a hospital bed with a huge sequence of doctors and doctors-in-training coming by multiple times per day to all ask identical questions, most of which they ask every visit—same day be damned. Note that I am hooked up full time to a very uncomfortable monitoring device that reads to a central computer on the therapy floor. This gives constant blood oxygen, EKG, and other information. They still send in technicians every couple of hours to take an EKG (separate hook-ups), read my blood oxygen (separate hook-up), take my blood pressure (separate…), etc. I don’t know where these data go. I suspect nowhere. 

As I still have two radiation treatments, I’m pretty nauseated. Can’t eat. This frustrates the crap out of the nurses and resident physicians (generally responsible for the floor, not specifically for me). They really, really want me to eat. I explain that the radiation sickness has to go away first. They cluck sympathetically. And try to get me to eat. 

The night technician reminds me of my Mom in the 1950s—totally wired on caffeine and nicotine. She talks a mile-a-minute. Wants something to make crab cakes “fancy” and a recipe for pineapple cole slaw. I make up a dill and yogurt topping for the crab, and bastardize an internet recipe for the slaw. She goes home happy.

Today, for the first time (last radiation was on…Thursday afternoon), I am NOT radiation sick. I eat a couple cans of U.N. Emergency Rations. Naturally, I fill up quickly. But at least I’m frickin’ eating, you know?

I get a new nurse for the day shift today. This one is incredibly detail-oriented and thorough. She carefully stacks all my unused cans of food neatly in a corner. Straightens my night table. Fills all my water bottles. When she sees me start to eat a can of food, she asks me to wait. Says she “just wants to check”. So she hooks a 60 cc syringe up to my feeding tube AND WITHDRAWS ALL MY GUT CONTENTS AND DUMPS IT INTO A BEAKER. I just look at her, and tell her nobody’s done that to me in more than 4 years of cancer struggles. She says she likes to do it “just to be sure” (sure of what, I’m not…well…sure…). Then she re-pumps the goop back into my gut and gives me permission to eat! Which I do. But this may have to go down as the weirdest-ass meal I’ve ever had. And believe me, my friends, I have had some weird-ass meals in my time!

Anyway. I will start chemo this week, on believe, maybe on Wednesday. I’ll give you whatever feedback I have next entry. I’m also going full-time on oxygen. The deterioration in my lungs is now impacting my respiration. I need oxygen to keep from becoming anoxic and, well, dead. 

Meanwhile, everybody, remember I love you all, and I’m living through you. Live ‘em while you got ‘em, my friends. As you know from my example, they ain’t forever. But they’re sweet as hell while we have them!!!

Saturday, July 12, 2014

It Might Get Messy

OK. When I told you last week that you should check in this week, I figured I’d have an appointment on Wednesday where the doc would set up some diagnostic tests and I could let you know from those what would be coming next.

Well. The instant I showed up Wednesday, Dr. H had me duct taped into a wheelchair and whisked to the Emergency Room, where the triage nurse stamped a big “PRIORITY 1!” on my forehead and had me hauled into a therapy ward within about 15 minutes. And then the Armies of the Medical Arts took over and applied state-of-the-art science on my behalf for a couple days….

Holy frickin’ hell, they kicked the SHIT out of me the past two days. They stuck big instruments into my throat, bronchi, and lungs. They pressed me against hard boards to photograph my insides. They took a total of…6…7…a dozen frickin’ radiation exposures of different kinds (I’m sure just because I haven’t had enough radiation in the past few years). And that was before they exposed me to the therapeutic radiation, which they then did once a day. And then they stuck huge needles into my back and drained almost two liters of fluid from each side of my frickin’ lungs!!!

Man. The upshot is, though, that the doctors think if I go through a hellish month of radiation and chemo, I can buy a good 12 months. I dunno, sounds like a hand I’d play at the poker table so I’m in. 

Anyway, here’s what the docs believe to be the medical situation at the moment. Fortunately (it is a HUGE prognostic parameter), there do not appear to be malignancies in my respiratory tract proper. Rather, there is a tumorous mass in the peritoneal/pleural wall from my throat, down along my lungs and along the mid line of my chest. Plus the bit on the liver. The latter they seem to be dismissing as a meaningful threat. I’m certain because the pleural malignancies will kill me long before my liver gives it up.

At the moment (pending largely laboratory results on the 4 liters of fluids from around my lungs), docs expect the short, white-hot therapeutic radiation they are exposing the tumorous mass to to, if not kill it, at least suppress it. That will mean I can breathe and not drown in fluids pouring off the malignant membranes. Then, they think, carefully targeted chemotherapies can further suppress the mass so it doesn’t runaway in a hurry and kill me in painful, gasping-for-breath, immediacy. 

Finally, should the chemo not do the job, there is apparently an excellent clinical trial I might have access to. The therapy being tested only benefits about half the patients tested. However, that half goes into total remission and becomes disease-free! 

So, it’s not as bleak at this point as it might be (although not by much, I admit). I’m gonna have a miserable month—prepare yourselves for serious whining in the coming weeks. And the terror of my childhood asthma—gasping for breath for weeks at a time, exhausted, claustrophobic, miserable, are returning to haunt me. 

If nothing else, I got big-time meds, so unless and until I’m really on that downhill well-oiled slip’n’slide toward my final spot on the Great Suburban Lawn of Life, I should be able to keep myself at least moderately functional.

Remember how much I love you all. Next week, I promise you, there will be even more exciting (and probably painful, and possibly disgusting) stuff to report. So check back in. Rock and roll, everyone. It’s what we got left goin’ for us!!!


Saturday, July 5, 2014

It Might Get Messy

We’ve talked about Ulysses S. Grant here before. Now’s a good time to revisit Grant, and dig a little deeper into his death.

But first, his life. His name was actually Hiram Ulysses Grant. The Congressman who petitioned him to West Point as a favor to his father simply misstated his name on the letter of recommendation. Grant argued, but the U.S. Army bureaucracy could not be moved. Ulysses S. Grant he became [1]. 

I’ve always felt a kinship with Grant. He lived a sort of existential life, with ups and downs that were largely driven by factors beyond his control. He worked hard, hammered at problems until he solved them, was devoted to his family, and recognized opportunities. Otherwise, he rather sat on the inflatable raft while the ocean of life moved under him, sometimes dumping him off, sometimes propping him up just when, say, the U.S. needed to have Vicksburg fall, Lee’s army could finally be defeated, and the country needed a sensible President. 

He did smoke cigars. Lots and lots of them. During the war, I expect, he smoked pretty much constantly. He couldn’t drink to relax. He had a complicated relationship with alcohol. Historians remain divided on this issue even today. It appears that he was one of those people whose physiology didn’t process alcohol well, so that a small quantity pounded him. Despite the existence of some contrary sources, he largely quit drinking when he realized its dangers for his particular biochemistry. And he definitely avoided alcohol when there was a lot of metal on the table—before key battles in the war, and during his Presidency. 

He had a house at the Jersey Shore, in Long Branch. His throat cancer announced itself in the summer of 1884 when a ripe peach and a glass of water caused him sudden and intense pain. It was a bad time for his health to fail—he was in deep financial difficulties, having been conned out of the savings from his Presidency by a seedy investor. But. He had just started to write and publish well-received articles in popular magazines. Mark Twain had a start-up publishing house, and offered him a good deal for his memoirs.

He started writing sometime in the autumn of 1884. Twain got him a couple of researchers and the editing was done in real time. As he finished a block of text, it went off to be edited while he tackled the next one. During the spring his pain increased, it was difficult to function. The doctors came up a way to make him as comfortable as possible while still allowing him to work. During the day, they gave him cocaine-based pain killers. At night they switched to opiates. 

It worked well. Smith says “In extreme pain and often groggy from medication, Grant wrote 275,000 words in less than a year. The thoughts flowed steadily from his mind to the paper.” He died on 23 July 1885. With a truly melodramatic flair, he had handed the assistants his last re-writes just days before. The book was an enormous critical, financial, and historical triumph. U.S. Grant rode the peak of a good wave to the end of his life. 

Somewhere down below I’ll sort out for you my (possibly appearing grossly and unjustifiably egotistical) belief that Grant and I share more than rampant throat cancer. For the moment let’s sort through my physiological condition. Some of you have had an email briefing on status of the civil war raging here in Cancer Land (copyright, trademark). But things are pretty complicated. Please stay with me a bit here if you can. 

The landscape here is bleak. On Tuesday I had a PET/CT scan, radiographic imaging administered by a tattooed woman with a nice little nose piercing. She’s kind of aloof, but I’ve established a good relationship with her over the past 4+ years. I’m guessing her “good luck” as she handed me a CD copy of the imaging data was sincere. And also that she was shocked by the output as the 3-D composite of my head and torso built itself on her monitor.

Here’s the deal. There’s a big-ass spot of white-hot radiosugar uptake in my throat. I was mistaken about this last week. I thought the doc could see this area via the endoscope and had dismissed it. In fact, it was masked by the mess of blood and mucous that now occupies my battered head and neck. The radiation hotspot means the constant bleeding is coming from a nasty, large and aggressive malignancy right there where the war began so long ago. 

Then there are my lungs. 6 or 7 streaks of diseased tissue, both left and right lungs are involved. 

And my liver. A malignant slab occupies the upper edge of one of the larger lobes.

Finally my lymph system. Or what’s left of it. Remember a couple years ago they had opened my chest up and tried mightily to excise all lymphatics in the vicinity of the tumors. The cancer won that battle.

In brief, I’m screwed. The older, vastly experienced surgeon who’s been seeing me the past couple weeks said (and this is a quote) “…people in your condition have months, not years, of remaining life.” I’m glad he was willing to be so brutally honest. This also explains the asthma-like symptoms that have been worrying me the past few weeks. My lungs are indeed sick. 

On Wednesday, we’ll see Dr. H, the young surgeon who has helped me fight this war from the first skirmishes. We’ll be discussing the menu of malignancies, and make some choices regarding how I want to die. Because I think there are some options that give us a little flexibility. The lung tumors may be susceptible to certain chemotherapeutics that would slow their growth. The mess in my throat may be amenable to surgery or a focused attack of high-dose radiation. It cannot be eliminated, but it can be temporarily suppressed. The liver I’m afraid I don’t know much about at this point. Livers are physiologically active, though. It’s possible they could slice off the diseased hunk and force the cancer to reconstitute itself before becoming symptomatic. 

So I my have choices. None of them are “good” in the sense of a favorable long-term outcome. But it’s possible that I can maintain a reasonable quality of life while we wait for the hammer to fall. We’ll go over all this with Dr. H on Wednesday, so check back here next week for a more focused update. Also, a number of you have responded to my request for things I can do for you while I’m still functional. Several people requested a compilation of Thanksgiving writings. Highly esteemed Alexander M put together precisely that compilation last year. So I will deconstruct his wonderful scrap book, run off copies of all the material, and put together some binders of Thanksgiving invitations and affiliated materials. Others wanted me to visit my photographs, and provide a selection of the best. I’ve already started going down this road. I’m working on digging out my 35 mm slides to have them digitized, and I’ve been sorting the photos on my extant hard drives. I believe I can get a vanity publisher to put together an album at a reasonable cost. I’ll explore such options. 

In the meantime, my friends, the best thing you can do for me is to have a dynamite summer, seeing and doing things that need to be seen and done. I now live vicariously through you. And I won’t be living much longer. Dr. S, crusty old surgeon, says an average time-to-death of people in my condition is 13 months. I don’t think I have that long. My lungs are already getting wheezy, which means those malignancies are active and aggressive. But we’ll see. We’ll talk it out with Dr. H on Wednesday and I’ll keep you plugged in to what’s going down. 

Live ‘em while you got ‘em, all. They aren’t forever. But they sure are sweet while we have them!

Oh yeah. Grant. Typical for me, I have about 15 writing projects open and on the desk top. Realistically, I have to do some serious triage. I think I'm going to focus on the rock and roll book I'm writing with Beth. It's a really fun project, and will have some value for you all even if I don't live to see it completed. But maybe Sam Clemens has some spirit left to pump my way. I think, had he been alive when Buddy Holly hammered that first chord onto vinyl that let everybody hear it, he would have been enthralled. I'm no Mark Twain. But I can write, and I got rock and roll in my blood. So rock on, all. Can guitars protect us from the cold and dark of the inevitable, entropy-driven universe? There's only one way to find out!

Notes

[1] An excellent, readable biography is that by Jean Edward Smith, titled simply “Grant”, published by Simon and Schuster Paperbacks in 2001. The name screw-up is addressed on page 24.