It Might Get Messy

Here’s my problem. I’m not much of a guitar player. I can do basic open and barre chords, of course, and minor 7ths, and a few useful scales (major, pentatonic, blues, the usual). And I can noodle a solo or two, usually ripping off something I heard Leslie West play on the radio in the winter of 1972. I’ve even written 3 or 4 instrumentals, one full length, a couple of miniatures, and some uneven-but-interesting pattern runs. But my playing is actually pretty sucky. 

I CAN write a decent song. I’ve got 8 or 10 originals with interesting lyrics that cover my lack of instrumental skill. And while my “singing” is on par with my guitar-playing “skill”, I enjoyed writing and recording songs for several years. Just for fun, and just because I enjoy the word-play of song writing.

Now I don’t have a tongue. No more writing, “singing”, and recording. I’m down to instrumentals, which are not my strength. I have to stretch. I’m learning some new scales, and some new chords, and working on putting together credible guitar music without lyrics. Just another frustration on the long road from cancer to functional human being. 

I’m brought back to that thought from a few entries back. That the gods, realizing how important my voice has been to me, got together and decided that was precisely what I needed to lose to make it clear that I don’t control my destiny. Of course, putting me on the path to death-by-cancer of any kind was sufficient to make that demonstration. Maybe the voice was just somebody feeling cranky that day.

All this, of course, assumes that I get out of the cancer alive. A threshold which is still at issue, pending that important September PET scan to look for residual or recurrent malignancies. 

But I feel good. Not great—I still tend to bind up with mucous late in the afternoon, I have trouble eating enough to keep my weight up, and I’m too weak to do much more than sit and read or watch TV. I assume by a month from now I’ll be mostly over the drastic impacts from the radiation and chemotherapy. I dug out a couple of light weights from the basement, so I can start to try to rebuild some muscle mass. That’s the issue with my lack of weight gain. With my muscles atrophied from 3+ years of war with cancer, I’m incredibly weak. And have no metabolic foundations to move my weight north of 187 or so pounds (if I recall, the last time I weighed less than 190 was on my sophomore year high school football roster. It was 190 junior year, 200 senior year). 

I have pretty much worked out how to best take my medicines to maximize my ability to function. I wake up, usually late—9 or 10 a.m., and proceed to pour 3 or 4 cartons of “food” into my gastrointestinal tract. I keep it parked in the recliner, often snoozing, also reading, writing, and noodling on guitar, until 4 p.m. or so. At that point I dissolve a Zofran (anti-nauseal) and a couple of dilaudids (painkillers that also help dry me out) in some water, and take them with some “Tussin” cough syrup (also a dry-out med). That makes me comfortable until 6 or 7 when I “eat” 3 more cartons of food. Soon after that I change venue to upstairs, where I watch movies and videos with more guitar noodling. I take nighttime meds around 9 or so, and am usually asleep by midnight. Although these days I’ve been keeping music videos running most of the night. I tend to sleep while they’re on, and wake up when it’s time to change them out. Odd, I know, but it’s working for me. 

I did manage a breakthrough of sorts this week, in addition to sitting on my butt tossing little tiny barbells in the air. I ate some ice cream by mouth. And I didn’t immediately choke to death, as Dr. H feared when I told him I was gonna try it. Actually it was quite odd. Without a tongue to manipulate something in my mouth, I ended up having to tilt my head back to let the melted ice cream sort of flow into my throat. But flow it did, and it ran down the correct plumbing, never threatening my airway. So that was a worthwhile experiment. In fact it felt good to eat by mouth. I’m thoroughly sick of the milk-like liquid food I pour in through my gut tube. Being able to at least contemplate eating by mouth is helpful. Or maybe it’s “hopeful”, as in there’s hope I won’t be totally crippled for the rest of my days. 

A couple of other interesting things this week. Dr. Crossley (of course, don’t miss his weblog at daccrossley.typepad.com/ ) sent me an email regarding a cousin who was given 6 months by his oncologists and is now cancer-free. Very encouraging for someone like me, given 20% odds of remission by the doctors who now don’t see residual malignancy, at least on initial observation. And my high school class got in touch, after 40+ years of being out of contact. It’s nice to be back in communication with people I haven’t seen since 1971 or 1972!

Anyway. No other blog progress this week—this one’s the only one going up. Thanks to all of you for being here. You make it worth the struggle, and I love you all. Thanksgiving is just around the corner, and I’m looking forward to cooking the hell out of a house full of food. I promise to work harder on guitar. Until next week, my friends!

It Might Get Messy

So, many years ago, I had a business meeting in Hawaii (actually, it was after a grueling 2 week trip to Guam to work for the Air Force, but that’s another story). So I asked the staff in my Waikiki office (believe it or not, I had global, office-specific responsibilities at the time) what I should wear. They said “one of your Aloha shirts, of course”. I said I didn’t have any Aloha shirts. So they dragged me over to the mall and made me buy a state-of-the-art, inside-out-fabric, Aloha shirt (which I still have). Next morning I meet the guy for breakfast. He shows up in a mainland-style white business shirt, with creases from where he unfolded it after buying it at the same mall the night before.

That kind of misunderstanding pertains throughout life. For example, I met with my Oncology Surgeon a couple weeks ago. His main concern, properly, was residual or recurrent cancer. But I’ve also been suffering with a longstanding, ongoing, nasty throat infection. My doctor kind of made that a side issue, which we’re “treating” by having me regularly change out the internal plumbing on my tracheotomy.

But in fact, absent ongoing cancer (cross-reference last week’s entry to this weblog), the infection is a serious problem. I wake up in the morning, relatively dry and smelling reasonably like a human being. By evening, I’m weeping mucous from numerous portals-of-bodily-entry and I smell like a decaying cadaver. It’s just nasty.

So I emailed my surgeon. He sent a new scrip to the pharmacy, upgrading my antibiotic from “Cipro” to “Augmentin”. Yeah, I think that’s the same stuff they use for persistent ear infections in kids. Hopefully he’s giving me a massive dose. We’ll see. 

I wrote the above on Thursday, day the scrip hit the pharmacy. Now it’s Saturday. I’ve been hammering Augmentin for 3 days. I’m feeling better…and worse. Better, because it seems to be taking care of the throat infection. Mucous production is way down, and I don’t smell like road kill anymore. Worse because it’s played hell with my gut flora. Now I have vomiting fits and loose bowels. Sigh. It’s just not easy.

However. For the first time in my life I had this experience. Instead of thinkin’ “holy shit, it’s August already!”, I’m thinkin’ “shit, it’s August and I’m still alive!” Now THAT’S the way to ride the calendar!

I’m afraid I’m still behind on the rest of the weblog empire. Best I could do was get a piece submitted for my professional blog at www.aehsfoundation.org .  That’ll be up in a day or so. Thank you all for being here for me. As I gain strength, I realize more and more how much you’ve meant to my recovery. And I am incredibly grateful!

It Might Get Messy

Reading. It’s a way of life for most of us. If we’re sitting—in front of supper, the TV, on the porch, in the morning with a pot of coffee—we’re reading. But here’s a question for you. How many of you out there in weblog land fought your way through the fourth book of the massive bestseller set by George R.R. Martin “Song of Fire and Ice”? Uh huh. I thought so. And after you got frustrated with a storyline that didn’t move a SINGLE FRICKIN’ CENTIMETER in the course of a whole book, with the promise that the fifth book wasn’t going to move a SINGLE FRICKIN’ CENTIMETER with the remaining characters and that the story would pick up again in the SIXTH FRICKIN’ BOOK you just walked away from the whole idea, didn’t you.

At least I know I did. Finishing that fourth book was almost (but not quite) as disappointing as me finishing my first set of cancer treatments, only to find the cancer recurrent, and having horrific surgery as a second round of treatment, only to be informed by the doctors that there was residual cancer they couldn’t treat surgically and I would have to undergo a second round of radiation and chemotherapy after I recovered from surgery that removed my tongue and other key components of my throat. 

But I worked my way past that. But let’s not go there yet. Because, as Doctor John said on his first (and by far greatest) album “Gris Gris”, I got the quew-ah foah ALLL yoh’s eels (that’s “cure for all your ills”, if my dialect is too far from understandable, which is as I expect). Or at least for that George R.R. Martin ill. And that, my friends, is to pick up “The Mongoliad” series by a list of 7 authors but with Neal Stephenson as first author. I know, you’re suspicious that anything that email-rocketed back and forth among 7 people could flow, much less flow like a bottle of 2005 Chateau Petrus down the gullets of a roomful of drunk graduate students who stumbled into the wrong hotel on the way back from a night of pounding Guinness in an Irish pub somewhere in downtown Houston. But believe me, this series kicks some serious ass. I haven’t finished the third book. I know, you’re suspicious that George R.R. Martin managed to get through 3 books, at least, before he stumbled. But remember, I’m missing my tongue. And I have a permanent tracheotomy. I have a lot of time on my hands. I ripped through the first 2 volumes (hefty volumes) in essentially 2 days. And there are enough threads of plot (and theme) remaining that I already know the third volume (I’m about a dozen pages in) is going to be phenomenal. I’m pretty sure the author’s (many author’s) intention is to finish the whole thing up in 3 volumes. But I hope not. These books kick ass. And they DON’T bring  FRICKIN’ ZOMBIES BACK INTO THEIR FICTIONAL WORLD as a loose-ends plot tie-up to get out of tight spaces.

OK. Now that I’ve got THAT off my chest. I haven’t been as productive of writings the past couple of weeks as I should have. That’s because I’ve been gritting my teeth and waiting with clenched fists to get through my doctor’s appointment earlier this week. This was the first time one of the docs has been able to get a videoscope into my throat, because the damage from the radiation was so catastrophic that nobody could see a thing until now. But the thing is what they did NOT see. They did not see cancer. At least as far as first-tier diagnostics are concerned, my treatment was successful.

This is far from definitive, and much diagnostic work and monitoring remains to be done. In particular, there were known regions of diseased tissue in my oral cavity that can’t be seen by videoscope. Those require a wait of several months (roughly until mid-September) until we can do a PET scan to ascertain the metabolic condition of tissues throughout my oral cavity.

But if not definitive, it is substantive. Because, as Dr. H explained to the sharply-dressed young medical student he had with him, he could indeed see places on my palate that were diseased tissue before. And are not diseased tissue now. So, if the “hidden” areas of my oral cavity responded to treatment as effectively as the ones that can be videoscoped, there is at least a possibility that I am cancer-free.

I know. We’ve been here before. And the doctors gave me only a 20% likelihood that the course of treatments would put me into remission. And I’ve been disappointed before. 

But I worked my way out of that disappointment with the help of Neal Stephenson and 6 other hard-working, imaginative, impeccably researched authors. Maybe I’ll catch a break on this cancer deal.

With that said, I’ve been too wound up to be productive this week. I am not going to get the other 3 weblogs (counting my professional blog at www.aehsfoundation.org ) in this literary empire updated this week. However, I know for a fact that Dr. Crossley shares neither my sloth nor my indolence. So surf on over to http://www.daccrossley.typepad.com/ to get your weblog fix this week. And next week, check back here for the latest update (I’ll be scoped by my radiologist on Monday, so may have more news), and of course I’ll provide links to the other 3 blogs I try to keep up.

Thanks everyone, for the great good wishes this week. I may live to see many yet again, depending on how this all works out. I can’t wait to get together—my scribbling on white boards and electronic notepads is getting spectacularly fast. I can almost get the cynical jokes out in time so they are understandable. I’ll keep working on it!

It Might Get Messy

It Might Get Mess

Viniculture is in an uproar. I know how shocked you are to hear that. But not to worry. The issues are well beyond the palate of any of us (especially me, being as I have cancer of the palate. But let’s ignore that for the moment). The issues are complicated. At one level, there is a basic dichotomy between the wine that’s easy to produce and wine that somebody is willing to pay for. Beyond that, there is a question as to what precisely a “great” wine is. And the answer to that question depends on whether the grower believes in a slippery European concept of “Terroir”. Fundamentally, some people think good wine is good wine, and anywhere you can produce a rich, flavorful, delicious wine by whatever means necessary, it should be done. Other people think wine reflects the soil type, slope, weather, microclimate, and other local conditions, and may be thin and less flavorful while demonstrating the site-specific “terroir”. 

You can probably guess where I come down in this debate. Hell, if I can get a cabernet sauvignon that has that cut-cedar aroma and a thick, syrupy, mouth-filling texture, I don’t care if it’s grown in Inner Mongolia, I’m gonna love it. But I do understand that odd locally favored grapes and quirky wines have value as well. For years before I had to give up drinking (due to malignancies no doubt at least partially caused by said drinking), I was hooked on a rare grape called  Viognier. This grape made southern French white wines, and was nearly extinct—down to its last few hectares—when the international fine wine community (or “wineaux”, as I like to think of them) discovered it and approved. Now it’s grown in South America, California, and Italy, along with a big comeback in France.

Anyway. Here’s the point. It takes really active, ongoing, hard-working, blood-sweat-and-tears wine-making to grow fat, rich, international-style wine from any piece of ground anywhere in the world. You need lots of oak barrels (possibly oak chips for smaller wineries), concentrated, low-yield vines constantly pruned, and often blending wine from accepted “international” grapes to add to your brew. The “terroir” approach, at its worst, simply means the grower lets the grapes grow as they will and takes the wine as it comes. It’s a passive process that relies on the quality of the land to equate to the quality of the wine without additional intervention on the part of the grower.

Of course, reality is not as simple as that. Many “terroir” people put as much sweat and physical and monetary investment in their wines as the “international style” folks. Still, you can usually tell when the winemaker’s taken an active, ongoing role in production vs. someone who simply lets the wine wander where it will and bottles it up. 

Cancer treatment is a lot like wine growing, if you’ll permit me to stretch the analogy. Ongoing responses to cancer fall into one of two categories. First category is “active”. The many and frantic and complicated things you do and have to do in attempting to wrestle the illness to a standstill at least. Second category is “passive”. Of necessity, there is considerable down time in cancer treatment, while the physicians and patient wait to see the results of treatments—those hyperactive, hypercomplicated, often painful and uncomfortable efforts to stem the disease.

At the moment, I’m in one of those “rest periods”. Radiation and chemotherapy are over. Now we have to wait for the throat and palate tissues to recover from the walloping those treatments gave them. And that recovery takes many weeks. At some point, the damage from the radiation will be healed. Then we can do the diagnostic tests that will reveal whether or not, or to what degree, the treatments succeeded in arresting the malignancy. 

I’ve been attempting to foresee the outcome by quiet meditation, letting myself feel what in my throat seems natural and what might be ongoing malignancy. I’m handicapped in this effort, though, because the surgical reconstruction of my oral cavity, coupled with the treatment impacts proper, have left my throat in a frightful mess. Even now when I’m not in chronic severe pain, I’m uncomfortable. There are lumps and cuts and misshapen components in there, and I have no idea whether they “should” be there, or if they represent residual or resurgent malignancy.

Given that my doctors gave me a 20% probability of successful treatment, I’m afraid the discomfort may represent the hard reality of persistent cancer. But I don’t know for sure. I must admit that I am considerably stronger than I have been, and that I feel better than I expected to at this point. I think this week I see Dr. H, my surgeon. He has at least helped stem the chronic infection that made my throat sore and my mucosal secretions stink. Part of that success is the regular change-out of the internal components of the tracheostomy. I’d had the same PVC plumbing in there since February until Dr. H’s student changed it out a couple weeks ago. Now we’re going with a replacement every two weeks and we’ll see what happens.

I doubt that it’s time yet for regrown tumor material to be visible or for a PET scan to see through the tissue destruction of the residual radiation and chemotherapy effects. But if it IS, and Dr. H gives it a look-see, I will keep you posted. For the moment, just know that I’m feeling better than I have in a long time. Still incredibly weak, but not in constant pain, starting to expand my exercise beyond a couple hundred meters of walk to pushing a thousand. 

And of course, there’s always Dr. T’s promise that if they can’t cure my malignancies, they’ll make me comfortable. Or, as she put it, “VERY comfortable” if and as I succumb to the cancers. 

But we’re not at that point yet. My humble thanks to all of you for your support. I can feel the love, truly in ways I never expected to. Check in around the weblog horn on Sunday night. There will be stuff up at http://docviper.livejournal.com/  
, http://theresaturteinmysoup.blogspot.com/, http://sustainablebiospheredotnet.blogspot.com/ , and professional blog at www.aehsfoundation.org (find the click-through on lower left of the main page). And don’t forget Dr. Crossley’s wild west blog at daccrossley.typepad.com/ . Thanks for being here, everybody. A few summer photos follow for your delectation. 

It Might Get Messy

It Might Get Messy 

Dr. H, my surgeon, is a born teacher. Plus, he works hard at it. He almost always has one or two trainees at some level with him when he does exams, procedures, or surgery. A couple appointments ago, he had a visiting student from Mexico. While they are peering at the scope (via the little camera inserted via my nasal passages and sinuses), Dr. H says “see that hair? That’s because we used a chunk of his arm and chest to separate his airway from his esophagus.” And I’m thinkin’, “eeewww, no wonder my frickin’ throat feels funny”. Mind you, not funny Ha-Ha, funny like “really uncomfortable, as if there was a big patch of hair in my throat.” 

But that’s not why we’re here. We’re here to talk about John Coltrane. By the early 60s, Coltrane had played in R&B and rock and roll bands, mastered the intricacies of bebop, and revolutionized music by modal improvisation vs. playing over chords as in bebop. Through the mid-60s, Coltrane started to see a completely different way to play music. Possibly it came to him via his studies of Asian and African musics, but I suspect he was heading in this direction anyway. Rather than building a musical piece from its parts—notes, rests, measures, sections—Coltrane saw music as a problem of holism. 

Western music by its very nature is a reductionist enterprise. The whole is constructed by pasting together individual components into a single piece. Coltrane eventually studied a book of “scales” by a guy named Slonimsky. The scales are in quotes because Slonimsky didn’t restrict himself to known or accepted scales—major, minor, and associated modes. Rather, he broke the musical staff into as many variations as mathematically possible—scales that were all thirds, all fourths, etc., scales defined by moving intervals, etc. Slonimsky showed Coltrane that you could get a whole by an infinite displacement of parts. At that point, Coltrane’s brain clicked. If he started from the whole and worked back to the parts, he would transform the quintessential reductionist enterprise into an innovative exercise in holism. So he hired Rashid Ali, a drummer who played all rhythms at once on his trap set. Then Coltrane essentially played all notes at once, or as close to superposed as possible (including true simultaneous notes via a technique called “polyphony”), and started to dissect away the chunks of sound he didn’t need to sculpt music that brings me personally closer to believing in an anthropomorphic god than anything else. 

The problem was having a band that could understand and play the completely new music methodology. Coltrane ended up a man in transition for a number of years as he eased out of his “classic quartet” (Elvin Jones on drums, McCoy Tyner on piano, Jimmy Garrison on bass) and into the future. He basically ended up with Ali, and often with other like-minded saxophonists. His anguish in shifting bands was a problem—Coltrane was loyal and genuinely loved his band. But his art conquered it all. He turned music on its head, changing an inherently reductionist process into a holistic enterprise. In addition to “Transitions”, he recorded and issued one album—Meditations—twice, once with the classic quartet, once in his new style. Coltrane changed music completely several times in the course of his short life. And he lived in transition.

And THAT’S why we’re here. Cancer—and its treatments and outcomes—are inherently transitional. I’m going on my fourth year of war with cancer, and things change for me in big ways or small ways every single day.

Presently, the transitions seem to be in my favor. After being sick with a virus and exhausted (but happy) from a trip to the beach, I’m feeling a lot better. Almost feeling good. Today I managed to walk and get some cool photos. If my transition keeps moving forward toward health, I’ll be a very happy transitional camper. 

We’ll see. I take a lot of meds, so I need to separate short-term medical outcomes from long-term changes in the status of my tumors and treatment-damaged tissues. But today I feel good. Very good. Almost, and if I believed in mysticism I wouldn’t say it out loud, recovering. 

My friends, a lot of my good feelings come directly from you. Your support keeps me going, makes it worth my while to fight while I can fight and however I need to fight. I remind you I love you all. I leave you with a few summer photos. And I remind you starting Sunday evening to check the whole weblog empire: http://docviper.livejournal.com/ ,  http://aehsfoundation.org/ (go to lower left and click through to weblog) http://sustainablebiospheredotnet.blogspot.com/ , and http://theresaturtleinmysoup.blogspot.com/. And don’t forget Dr. Crossley’s wild west weblog at daccrossley.typepad.com/. 

More photos to come for sure, now that you all have got me feeling this good!

It Might Get Messy

There are two things I’ve learned about cancer. One is that having it takes your dignity, chops it up, and pumps it right out of the meat grinder and into the nearest sausage. It has slowly occurred to my consciousness that my cancers might well be punishment by the gods for my being so damned self-confident all my life. I can see the discussion now, round table packed with various gods and subgods: “This one, this Ludwig guy. Always laughing, awfully sure of himself, never doubts himself even when he’s so frickin’ far off base that he risks being dunked into the Bronx River. He needs to be taken down a notch or two. Throat, tongue, and parotid gland cancer it is.” Hammers the gavel. “Next case!” 

The other thing is that cancer is a long-haul deal, whether you’re cured and in remission, having a relapse, or just fighting the battle with the malignancy. Nothing happens fast. Pain runs through the entire process. Making it a VERY long haul. Oh. And your immune system is intensely compromised, making you susceptible to whatever “bug” is going around at any particular moment. 

This week returned from the beach. Made the trip home without incident and even without nausea/vomiting. Then the next day was miserable. I was leaking mucuous from every place mucous could possibly leak from. As soon as I took my evening meds, I vomited in the messiest and grossest way possible. Today I am running a fever, although precisely what that fever is is hard to tell, since I have to take it under my arm. And this is happening while I’m eating two giant doses of Cipro every day, which presumably means my illness is virus-driven. And that it’s the same thing Jesse and several others in the beach house had. 

In addition, my throat now hurts and is running bright red blood into my mouth and presumably down my gut. So we’re being judicious with the Lovinox, which is intended to prevent a blood clot in my lungs from turning into instant death.

Yeah, if it ain’t one thing, it’s another.

On the plus side, I’m routinely getting six 250 ml cartons of food in per day, and my weight has finally climbed above 190. That’s a start to healing. I just wish my throat would stop aching. I’d FEEL more like I was getting better. 

Anyway. The few days at the beach were phenomenal, convincing me that I’m not too disgusting, exhausted, or physically impaired to function in the real world. My food was a little more erratic than usual, I have to watch that. But all in all, the beach trip was worth every minute of nausea on the ride down to Hatteras. 

Now I’m trying to get back to a routine of at least light exercise, hiking and taking photographs. But since I’m still sick with this virus and my throat issues, it’s difficult. At least I finished a nice piece of cut paper art—a tiger barb with all the scales cut to shape. Now I’m starting on a big southeast Asian butterfly. This paper cut stuff is pretty addictive. If I recall (and if I were you, I wouldn’t trust my recollection for the paper it might be printed on) when Matisse was crippled with arthritis and could no longer paint, he turned to paper cutting, and said he wished he’d found the technique earlier in his career. 

No, I am NOT comparing my shit to Matisse’s. But the concept is there. So at least I’ve got a respectable provenance. 

Anyway. The last couple of beach photos are below. That’s a ground skink, a tiny lizard that lives in the leaf litter and eats ants, spiders, pretty much anything it can stuff into that little maw. 

I am working hard to get back into the weekly writing routine. However, I'm still too weak to punch in the time clock this week. So, the rest of this weblog empire will not be refilled this week. However, check in next week. By next Sunday night (a week from today) I'll fill in around the weblog horn: http://docviper.livejournal.com/ , http://theresaturtleinmysoup.blogspot.com/ , http://sustainablebiospheredotnet.blogspot.com/,  and the professional blog at www.aehsfoundation.org (check lower left and click through to blog pages). And don’t forget Dr. Crossley’s wild west weblog at ccrossley.typepad.com/ . 

Love to everybody, more update next week. Thanks, everyone, especially the crowd at the beach for putting up with me, propping me up when I was too weak to move, helping me cook when I was too sick to do it. That was an important step in my “recovery” (in quotes because we have no idea if the treatments succeeded), physically but especially psychologically. Thanks again!