It Might Get Messy

So, in just another one of the continuous rounds of medical appointments that keep me alive and least marginally comfortable (and put miles and miles on the primary transport vehicle), I was scheduled for the oncologist this week. On the drive up to the hospital, Colin and Cathy both said I smelled "like a 3 days old road-killed possum on a highway shoulder in August". The doctor agreed. I couldn't smell or taste anything. A benefit, I suppose, of having my tongue sliced out with nasty surgical implements (although I am able to smell and “taste”, somehow, flavors in foods and spices. Presume there are enough remnant sensory cells left in my mouth and sinuses for partial functioning). Anyway, the doc put me right on Augmentin, with tablets the size of Lincoln Logs (or the larger model of Leggos, for those of you who grew up after Lincoln Logs went the way of the Troll Dolls, Rat Fink hot rod models, and the EZ Bake Oven). And I must admit, I am already feeling better than I was, so I do indeed seem to have had what was (to me, but not the rest of the world, apparently) a “cryptic” infection somewhere in my airways (it turns out that anaerobic infections are generally common in humans, are even more common in those with extensive surgery and/or cancer, and that odor is an important diagnostic tool, see [1] for a general introduction). 

Dr. T also futzed around with my pain meds. There is theoretically still some room for increasing my daily intake of Dilaudid, but I’m already on a dose that the insurance company considers maxed out—they won’t pay for more. And covering Dilaudid out-of-pocket is out-of-the-question. Each additional 4 mg tablet runs something like $20 or more at our local pharmacy. Street value would be even higher, if I wanted to hang around a West Baltimore neighborhood on a Friday night and hawk tablets out of my car trunk. Of course, I’d have to cover the overhead, including serious protective muscle, which would cut pretty deep into the profit margin. 

Anyway. I still need the pain meds, both for the chronically sore throat/upper chest and because it truncates occasional acute panic over my ongoing shortness of breath (I have Xanax, a tranquilizer, to smooth my baseline level of breathing stress, and Mirtazapine, a sleep drug, which gets me over the increased alarm my respiratory system raises when I lie down. The latter is pretty damned effective—it basically knocks me out an hour or so after I take it. This can be a problem at times—last night we put on the 3rd Hobbit movie right after I’d taken my evening meds. I was sound asleep before Smaug bit the dust. I have to remember to take the Mirtazapine later in the evening…). Rather than play around with increased dosage of Dilaudid, Dr. T is experimenting with insertion of another pain killer in my daily cycle of medications. She’s given me a couple of small doses of liquid morphine per day. My task is to figure out the optimum times to take the morphine so that it knocks back something of my addiction to the Dilaudid. This will enhance the overall efficacy of the Dilaudid with minimal increase in my total daily dose of opiates. 

And what the hell, if we need an influx of cash for something—say, expanding the size of our television screens and installing a state-of-the-art surround sound system to accommodate the latest Slipknot concert video (for some reason I’ve been deeply into brutal thrash metal music all week) I’m sure the liquid morphine will bring a good price on that street corner in West Baltimore, perhaps mixed with an energy drink. Hmmm…maybe there’s a concept here for a franchise operation. We’ll buy up old ice cream trucks, re-fit them for a variety of psychoactive pharmaceuticals, and offer operator territories in the big cities up and down the I95 corridor. I bet if we ran them Thursday through Sunday nights by Monday we’d have massive piles of cash on our hands. Which we’d have to re-invest in protective firearms and other hardware. But hey, you gotta spend money to make money!

Anyway, as you can probably tell from the chipper tone of this week’s entry, I’m feeling pretty damned good. My thanks to all of you for being here, and a special shout-out to Dr. D for the wonderful visit. It’s an honor to host an old friend who is a Department Head with an endowed chair at a prestigious educational institution. Check in next week for a medical update (especially how the daily load of opiates is functioning). And hopefully we’ll have some room for remarks on current work on biodiversity of urban ecosystems. It seems like I’ve spent my entire career whining about the lack of simple, basic field ecology in urbanized ecosystems, while the few research institutions working on urban systems engage in arcane esoterica (is that redundant? Sort of seems like it from here…) such as soil processes and precipitation chemistry. Finally, some basic biology is forcing its way over the ramparts of heavily sheltered academia. Maybe I can find a way to include a copy of our publication from a few years ago on urban bird biodiversity in New Jersey. Not to show off, of course…well, yeah, actually, just to show off! Along with the people in California doing the new fly work (I’ll have to try to dig out the science fiction novel that does a good riff on fly speciation in near-future cities. I have no recollection whatsoever regarding the author’s name, so the search may be frustrating. But hey, I got a lot of time on my hands!).

Rock and roll, everybody! Use ‘em while you got ‘em. They are NOT forever!!!

References

[1] http://medical-dictionary.thefreedictionary.com/Anaerobic+Infections

It Might Get Messy

Holy smegging hell. I’m not sure what we did to deserve this, but it must’ve been something that really, really annoyed whatever quorum of gods was paying attention. Most of the world deals in daily tragedy ranging from war and domestic bombings to deep unemployment, environmental nightmares, epidemic illness and violent cultural unrest. While we here in the “New” world are cursed with pure, unalloyed comedy in the candidate pool of national “leadership”. Perhaps I’m just being overly sensitive, because I didn’t expect to be here this far into the electoral cycle. But I don’t think so. I’ve seen every movie the Marx Brothers ever made. And there is no question that the people running for the U.S. Presidency do funnier improvisation as a collective than Groucho, Harpo, Zeppo, Chico and Gummo (the latter admittedly never made it into any of the scripted movies, being strictly devoted to the stage acts) ever contemplated.

Of course, “all politics is local”, so the best thing to do to explore forthcoming electoral possibilities is to check in with our neighbors to see what’s up in their lives. But before we get too far down that Highway to Cynical Hell, let’s check in on my physical condition. Not much happening physiologically this week. All things considered, that’s pretty much the best outcome by far of all the possibilities. It means the seed cancers splattered around my lungs and chest cavity haven’t sprung to life and re-started their multipronged attack on my respiratory apparatus. When I was with the oncologist a couple weeks ago, I asked her what signs, symptoms and signals I should be watching for to indicate the rise of active pathology [(for some reason I think of it like a “rise of the machines” in a Terminator movie. And of course the ability to travel in time seems like it should have potential therapeutic benefits. Either I could return to the past and eliminate some of the grossest carcinogenic behaviors from my repertoire, or I could jump to the future on the assumption that at some point cancer will become a curable problem and I could pop naked (unfortunately not looking AT ALL like Arnold Schwarzenneger or Kristanna Loken) into the post-cancer world. Of course, after thinking about it for 30 or 40 seconds I remembered that Sarah Connor died of leukemia. So I’m gonna have to go deeper into the future, hoping that the Terminator Wars haven’t impaired human medical advances. Maybe it would be easier to just track Kristanna Loken through space and time as she appears naked from the ether via the nearest wormhole. Admittedly this wouldn’t help fix my cancer, but it would probably get me to forget about it at every T3 pop-in/pop-out event]… . 

OK, dammit, I lost my train of thought there. Lemme look back earlier in that bloated paragraph… . Ah. There we are. Signs and symptoms of resurgent cancer. She said it could be increased pain, bleeding, trouble breathing, massive swings in mucous production…any one or more of a wide range of pathological changes in my condition. Sort of a “know it when you see it” deal, apparently. And I do pay attention. Mostly because of a now innate terror of the horrific effects of chemotherapy, which accounted for essentially all my hospitalizations over the past few years. So I live in walking dread of the week after the infusion bags are locked to my medical port. When my cancer returns, Dr. T is planning on putting me right back on the chemo drugs that were so effective at getting me to this point. We don’t have the option of going to the more advanced technology of monoclonal antibodies. We started my treatment there, and I promptly fell into anaphylactic shock and had to be put on a respirator. But I’m wondering if there’s not some other cocktail of drugs we could try, just in case they work without sending me barfing, whining, and/or barely conscious via ambulance rescue to the Emergency Departments. 

Happily, at least for the moment, I don’t seem to need treatment beyond my daily regimen of painkillers and physiobalancers for blood pressure, gastrointestinal activity, anxiety, etc. In other words, I’m feeling surprisingly good for someone with a terminal illness. I intend to ride this pony as far as it’ll take me before I have to “switch horses in midstream”, as criminally underappreciated California female rock group “Fanny” from the 60s would have it. (their 90 song Rhino Handmade collection is available as an mp3 download on Amazon for the bargain  price of $33. Highly recommended. No household should be without).

OK. So now we can go back to the stand-up comedy contest that is the initial marshaling of forces for the 2016 national elections. From Hillary Clinton to Ted Cruz, Jeb Bush, Scott Walker, Chris Christie, Rick Perry, Lindsay Graham, and on and on, the humor value is enormous. Of course, the comedic fun has to be balanced against the potential to really screw something up in an increasingly complex and dangerous world. This means it would be nice if we could elect somebody with half a brain and two scoops of meaningful global experience in 2016. And I’m not seeing that person anywhere between here and the horizon, otherwise known as “nominating conventions”. 

Of course, should somebody meeting minimal standards of intellect and experience actually show up and run, you’d like to think the “locals” of famous political aphorisms would have the brains and ethical perspective to recognize and vote for same. 

Sigh. Here in our neighborhood, the most recent insight into the state of voter’s minds was revealed by the owners of the house across the street, caddy corner to ours. This family borrowed a shitload of money against their house (given the listed value, it is apparent that they have at least two, and maybe more, mortgages). They put their kids through college, built a small collection of high end automobiles, and then simply walked away. That’s right—they stopped paying off their mortgages. Apparently they stopped making payments several years ago. The banks finally foreclosed. And the family simply packed up and disappeared. Leaving an empty house to deteriorate and drive down the value of the rest of the properties on the street. Eventually, hopefully, somebody responsible will pick the place up on a short sale or foreclosure auction. But that could take a long time. Time that will see that house falling ever deeper into thermodynamic hell as the lack of maintenance lets things slip into entropic degradation.

Sigh (again). To the degree that these people gamed the system (a not-uncommon event, search on “strategic foreclosure” for all the fun details), they’re going to win and the remainder of the neighborhood is going to lose. No wonder a complete whack job like Ted Cruz is a viable presidential candidate. Not only will the electorate not call his bluff, his dim understanding of reality and cruelly shallow thinking may be right in tune with the times. 

OK. I hate to leave you all with this depressing story, but I’m afraid this is the road we’re walking as a collective social enterprise. To counter this frightening overlap of local and national politics, I suggest you take full advantage of the changing seasons. Get out and watch the songbird migration this spring. Cook outdoors all summer. Live ‘em while you got ‘em, because they are NOT forever!

It Might Get Messy

So, as an official Dead Man Walking, I pay obsessive attention to physical signs of decline. “Is my breathing tight today? Shit, maybe the cancer’s waking up in that right lung.” “Am I running a fever? It must be pneumonia.” Etc. I do the same regarding psychological markers, but (shockingly), until recently, haven’t found much down that rabbit hole.

I’ve spent my life functioning in an oddball maze of interests and obligations. Read this, write that, sketch that dream from last night, practice those new scales, structure the chords for that new song, get the camera, there’s a good bird on the feeder. Half a century of bouncing from project to project, always with a pit of guilt deep in my gut that I’m not finishing things fast enough to move on to the next thing.

What I realized this week is that, while I still work the same way—book to guitar to manuscript to recipe to sketch pad to watercolor sheet—that nugget of gonna-miss-the-deadline-panic is no longer there. In fact, when I open that book or pick up the guitar, I actually become calm and comfortable. Where I used to get tense and worried. So what the hell happened?

Took me a bit of self-analysis to figure it out. But I think I got it. Back when I was healthy and anticipating a long, strong life, everything I did was about PRODUCT. About getting it done. Finish it so I can move on to the next thing and finish that so I can move on, and on and on. And of course I never (well, seldom) actually finished anything. Thus the gnawing deep inside. 

But now I can see the end of my life. And it isn’t that far away, and it’s very, very real, not the abstract empty concept of my younger, hardier days. Not only can I see it, I can feel it. In the pain, the discomfort, the mucous, the blood, the crazy surgically redesigned plumbing in my throat and chest and gut. And now, when I put down book A and pick up book B or the guitar or the sketch pad, I feel still and quiet and complete. And it’s because, to a dying person, doing something--anything-- is life-affirming. It’s time off the track to the grave. It’s no longer about product, because there’s no hope that I’m going to generate meaningful product before I’m dead and gone. Now, it’s all about PROCESS. Process of the things I love—reading, writing, music, photography, drawing, painting, cooking, hell, just watching my kids come and go. For someone in my condition, BEING is everything. Because pretty soon I am no longer going to “be”. I’ll be gone, trading physical presence for existing as fading memories of family and friends. So the more being I do now, the longer I hold off that moment of not-being. Time to wrestle that guitar and the scale book out of the corner behind my double medicine cabinets… . 

Along those lines of being, we had old friends in for dinner last Sunday. It makes me feel incredibly good to have family, old friends and young kids in the house, sharing food and wine and telling jokes and stories. Almost allows me to forget, for a while, that I’m living on borrowed time with a terminal illness. And that’s a great feeling.

For supper, we wanted something easy but delicious. Right away, when those are your criteria, you think Italian. A few plates of antipast and some simple but tasty main dish and everybody’s life takes on that Zen patina of comfortable existentialism. So we went for one of my Mom’s best repertoire items, Pasta Fazool.

Of course, I ended up too sick at the key moments to contribute physically to the cooking. I did manage to direct Colin, Molly and Cathy through the process of getting it all together. And it worked out well—probably better than if I was on the case myself.

Pasta Fazool. An Italian, and Italian-American, classic. Properly it’s pasta y fagioli, pasta and beans. “Fazool” is commonly believed to be a sloppy Americanization of the native Italian. I don’t buy that (but as far as I know, I’m the only person on the planet who doesn’t). I think “fazool” reflects Arabic “fool”, for beans (offered 3 meals a day in the four-star hotels of Jordan and Kuwait, and I expect elsewhere although I can only provide on-the-ground verification for these two). Given the dominance of Muslim influence around the Mediterranean, including Sicily and Spain through the 1500s, and the continued mix of cultures since then, it seems likely to me that the peasantry of the Italian peninsula conflated things before Italy became an actual national entity in the late 1800s. In which case “fazool” is a linguistic bastardization and not simply a slipshod error.

Anyway. Pasta fazool. About the simplest and most delicious dish in the global Italian repertoire. My family always made it with nonsmoked pork, which distinguished it immediately from pasta y lenticci (“pasta lindeech”, or pasta and lentils), which we always made with smoked pork and/or bacon. Pasta fazool is usually made on the stovetop, but there is a high risk of burning the bottom and rendering the whole batch inedible. I make it in the oven, which requires much less fussing, and also accommodates a huge batch if you want to make it for a crowd.

So. Get a chunk of pork. Not a lean piece. No loin, tenderloin, chops, or fresh ham. This is needs to be an old fashioned fatty and gristly piece of meat. The best cut is the shoulder (sometimes called “butt” or even “Boston butt”, and I have no idea where either odd misnomer came from), bone in. Without bones is fine. If you can find shanks, these are excellent, good fatty ribs work, and if you’re a little adventurous, a couple of pig’s feet make it even better. 

In a baking pan appropriate for the size of the batch you’re making, put olive oil, the pork, chopped onions, plenty of crushed and minced garlic, heavy doses of salt, pepper, dried basil and dried oregano, a couple of bay leaves, canned diced or crushed tomatoes, canned or boxed beef and/or chicken broth, and a heavy sprinkle of standard supermarket-grade balsamic vinegar. Throw in some wine, if you have an open bottle/box in the frig. Stick all this in a slow oven. Let it cook until the meat is falling-off-the-bones or falling-apart (if no bones) tender. To a certain degree, you can adjust the size of the chunks of meat to the time available for cooking. If you use a whole shoulder, it will take 6 to 8 hours. The same shoulder cut in 10 or 12 hunks will need 3 to 5 hours. Check periodically to make sure things aren’t drying out, this wants to be stew or even soup texture. At this point, remove the meat and let it cool so that you can pull it from the bones and shred or dice the flesh and skin. Skim some of the fat off the contents of the roasting pan. Just get the easy stuff, don’t be anal about this. You need some of that fat (which is part olive oil, remember) for flavor. Return the pan of liquid to the oven. When it re-reaches a simmer, add small pasta (what Italians would use for soup—ditalini, little elbows, tiny penne) and canned Cannellini beans. When the pasta is done, so is the dish. Toss the meat back in. Serve with Parmesan, grana padano, and/or pecorino grating cheese, good bread, a salad, and plenty of rough wine. Made correctly, this dish has the odd property (associated with other dishes of Italian extraction, such as sauce Bolognese) of rendering the happy diners unable to stop eating until they are stuffed to what would be gills in an aquatic version of human beings. Very satisfying for the cook!

And for the cancer victim. Sitting in my hospital style bed and watching it all go down gave me just that same Zen-of-being peace as picking at the guitar. Which I did for most of the afternoon while the garlic clouds drifted through the house. Having people around actually feels better than a full dose of dilaudid, which is a highly pure and potent opiate. Which is pretty much the gold standard for “feeling good” in human beings. Along with, as I now know, simply being alive and paying attention!

As always, I urge you to live ‘em while you got ‘em, because they are NOT forever. But if you use ‘em well, you can wring some real value from them. Thanks for being here, everybody. I love you all. And I love still being here to…well…be here!!!

It Might Get Messy

Been a heavy week here in Cancer Land (trademark, copyright)(note: I claim the trademark on “Cancer Land” because at some point I intend to write a business plan for a disease-based theme park. It’ll go up near some famous hospital and have rides that take the happy visitors into the bone marrow where they can experience leukemia developing, happening, and being treated; a liver for liver cancer; mouth and lungs, perhaps with oversized realistic simulations of tobacco use, etc. Based on my post-adolescent experience at Warner Brother’s Jungle Habitat in West Milford, New Jersey, I’m certain we can make a fortune with this). Had the first diagnostic scans since early December and met with the oncologist despite having to juggle serious winter weather. But before we get into that, let’s consider the difference between KNOWING something vs. DOING something.  

We can start with a gimme. Visual arts, painting, say. Out of any hundred people you drag off the street into an art history program, a fair proportion…for argument’s sake, let’s say 70—could memorize enough names, dates, styles, even technique details to get a middling grade—a C. At the same time, no matter what package of incentives, punishments, and pedagogical methods you string together, a much smaller number…probably well under 10—could produce even minimally credible canvases. It’s that difference—70 vs. way less than 10--that I mean by "knowing" vs. "doing". 

Interestingly, the same delta doesn’t necessarily pertain, at least at a conceptual level, to the sciences. “Knowing” a science—that is, the vocabulary and grammar that makes up its description and verbal record—is challenging simply because of the volume of bullshit involved. And “doing” science is, theoretically, anyway, relatively simple. Science operates by experimentation. The best and most robust experiments are simple in concept. Hold all variables the same except for the one you are interested in. Vary that “interesting” parameter. If you’ve done your job right, differences in experimental outcome will be clearly attributable or not attributable to your variable-of-interest. Simplicity itself! That is, until you get down in the weeds. When your variable-of-interest is the velocity of certain subatomic particles, you need a 17-mile ring of high-powered electromagnets in a facility involving dangerous electrical power levels, vacuum environments, and near-absolute-zero infrastructure taking up a large chunk of high-priced real estate in alpine Europe. 

My point is…uh…hang on a second, lemme think about this…Oh, wait, I remember. The point is that reading even a brief paragraph comprising a radiologist’s report regarding a patient’s cancer requires you to understand a boatload of specific jargon, or, as phrased above, “volume of bullshit”. 

Which brings us right back to the weekly report of this weblog. On Monday, we went all the way to the hospital for a CT scan of my chest. We didn’t use the local radiology lab here because the last scan was taken at the hospital when I was there for pneumonia between Thanksgiving and Christmas. And then yesterday we met with the oncologist, for the holdover appointment from Thursday’s “massive” (maybe 10 inches) snow.

The entire radiologist’s report comprises precisely 13 lines of text. To read it, we need to know the definitions (most of the following are from dictionary.com, which nicely tacks specialized medical usage of words onto the normal people definitions) of “hilar” (the hole where blood vessels or nerves enter an organ, also called a “porta”); “mediastinal” (a septum or partition separating two parts of an organ); “nodular spiculated” (having the form of a spicule); “atelectasis” (incomplete expansion or collapse of the lungs); and “subcarinal” (no definition at dictionary.com or other rapidly available dictionary sites); among others. Perhaps we should turn to the 5 line “Impression”, which has more the flavor of a summary intended for medical professionals who are not cognoscenti of radiology. 

The “Impression” says: “Overall improved lung aeration with diffusely scattered nodular and spiculated consolidation with atelectasis. New dense and ground glass right upper lobe consolidation. This could represent infectious/inflammatory changes or neoplasm. Continued follow-up imaging is recommended. Large right and moderate left pleural effusions have increased mildly when compared to the prior study.”

Basically what he’s saying is that my airways are surprisingly open, the pre-existing cancers are still there but they’re smaller and fewer, there are some new spots in the right lung that could be inflammation or scarring (as from chemotherapy or pneumonia) or new cancers, and that there is some fluid in the pleural cavity around both right and left lungs. I assume “ground glass” is a term-of-art describing nodules in the lung tissues. 

So I discussed the meaning of all this, particularly possible timelines, with the oncologist. She, being a good and honest practitioner, warned that it is impossible to forecast temporal changes in my specific case. However, in her experience, individuals with generally similar conditions have gone a few months to a year before the disease has climbed back into the cockpit and fired up the afterburners. She also pointed out that my cancers (but not the rest of me) responded very well to the chemotherapy that followed the radiation that followed the surgery last year. Her point being that if I’m willing to put up with the hammering of the chemotherapy, it is likely to have a good therapeutic outcome so that when I get sick again, we’ll have a place to turn if I want to buy some more time to be alive. Given how horrifically ill the chemotherapy made me last year, I will certainly have to consider how much ugliness I’m willing to trade for more time on earth. 

But that’s an issue we’ll deal with when the time comes. For the moment, I’m breathing relatively easily, I can take enough medication to sleep through the night without drowning in mucous, and I can function, at least minimally, like a human being (like I can get up and down, walk around, don’t need to haul oxygen with me for every excursion, and seem to be keeping my weight stable despite ongoing struggles with getting sufficient calories of the U.N. emergency rations ingested every day). Given that all three of my key doctors—oncologist, surgeon, and radiologist—believed I would be dead or, at best, clearly dying right around now, I’m at least a bit ahead of the game at this point. You can believe I’m gonna live ‘em while I got ‘em, because now I seriously know they’re not forever. But I’m gonna stretch ‘em out as long as I can, and I commend the same to you. Thanks for being here, everyone. Check back next week to see if my present good health is robust and maintaining, or fragile and fleeting. Where else can you get such a truly life-and-death documentary for the investment of reading a few paragraphs of online text?