It Might Get Messy

Yikes. What a week it’s been for health care here in the USA. We finally get our shit together as a society, manage to find a way to get everybody access to health care, and the White House mangles the great concept via bungled process. Icky. But that’s not the worst of it. The conservative fringe (which is a hell of a “fringe”—something close to 50% of the country self-identifies as “conservative”) has spent months loading weapons, pointing them at their own feet, and blowing them into bloody political froth. If the Democrats could manage to walk and chew gum at the same time, the Republicans could be so discredited that we could sell the whole damned middle of the country back to the French and leave ourselves with the rational and fun loving coasts plus a hefty cash balance to constrain health care costs to treat the sun tan related skin cancers and alcohol-damaged livers from all the beach butt-parking.

But that’s not why we’re here. We’re here to consider my own health care contretemps. And in that department, it’s been a busy week.

Monday I had the diagnostic tests. The technician shot me full of radioactive glucose first thing in the morning, and after an hour parked me on the stretcher to run through the detector. The radio-imaging takes 24 minutes, during which I lay flat on my back with my head tilted back and cradled in a basket. So here’s the problem. A few weeks ago, you may recall, I noticed that the saliva glands in my mouth that had been shut down since the radiation treatments started last spring had struggled back to life. They’ve been pumping out great volumes of thin salivary mucous ever since. This has some potential to be an issue. Since my epiglottis is permanently disabled, liquids originating in my mouth and throat can slide down my airway as readily as they slip down into my gut. Conveniently for me (and unusual, my doctors are surprised to learn that I do not need to constantly use the mechanical vacuum apparatus I have to drain my throat of liquids), the large volumes of saliva mostly find their way into my gastrointestinal tract and not my lungs. 

Unless I’m on my back with my head cradled and tilted back. Under those conditions, all the thin salivary mucous (along with the lesser volume, but more difficult to manage, thick mucous originating deeper in my throat) can’t flow into my gut because “downhill” with my head tilted back is toward my cranium. So, for 24 minutes (during which I cannot move without screwing up the imaging) I had to lie there and feel liquids relentlessly filling my sinus cavities. In fact, by the time the imaging was done, the liquids were deep enough to be running out my nose. And when I finally sat up… . Woosh! Something like a liter-and-a-half of mucosal secretions started pouring out my nose, mouth, and tracheostomy tubing. 

I have a good relationship with the imaging technician. We’ve spent a lot of time together the past few years. She is a youngish woman (maybe mid-30s), possibly spent time in the military. She’s got a sexy little tramp stamp, a very artistic abstract tat on her shoulder, and a diamond stud in her nose. She is mostly gruff and businesslike. But not with me. I crack her up, for some reason. So while I’m sitting in her office waiting for her to cut me a disk of the imaging files and leaking fluids like a sunken ferry hull lifted from the water by industrial cranes, she chuckles and kicks a waste basket across the floor to me so I can dispose of the enormous mass of paper towels accumulating in my lap as I mopped up the waterfall of goo. 

On Wednesday, I had appointments with surgeon Dr. H and hematologist/oncologist Dr. T. Neither of them had read the radiology report before I got there. But they’re both excellent at what they do. Pulling up the file and scanning through it, they gave me the results. Which are without a doubt amazing. There is not a sign of malignancy anywhere in my head or neck. The surgery, radiation and chemotherapy last spring, given an 80% likelihood of failure by the same doctors, totally succeeded. There are a number of small spots in my lungs and in a couple of lymph nodes in my chest (all the lymph nodes from my shoulders north having been surgically removed) that took up the radio-labeled sugar. But the doctors don’t see any of them as a problem. None of them seems particularly tumor-like. There is some long-term potential danger from the lymph nodes—apparently if those are actually malignant there is no effective treatment. But basically, Drs. H and T agreed that I am, somewhat to their surprise, cancer-free. They said any 60 year old male, lassoed randomly from the streets and without a history of cancer, would generate images precisely like mine.

On Friday, I saw my radiation oncologist. Dr. N poked and prodded. He and a nurse teamed up to get an endoscope into my throat (irritating it in the process so that I coughed up blood for several hours afterward), and there is no sign of any diseased or even suspect tissue. I’m clean. 

I do have a new pain (I think I reported it here a couple weeks back) at the base of my right mandible, running along the Eustachian tube. But this is not tumorous. It seems to be an artifact of the surgery. As the scars have settled in and the surrounding musculature recovered, they are apparently stretching or inflaming that area. But a half dose of dilaudid twice a day deals with that nagging pain just fine. 

All three doctors seem surprised at their own handiwork. They all expected to see signs of resurgent or emergent malignancy. But there are none. They did one HELL of a good job. 

My only real problem at the moment is nutrition. The emergency-ration food liquid is dense. I can pour in six 250 ml cartons a day. But that is not enough to maintain my weight, even though such a volume of “food” gives me chronic nausea and a tendency to acid reflux. I am very weak, and really need to stabilize my weight and gain five or six pounds to be back to a strength that will allow me to exercise. It takes a daily ration of seven or eight cartons of “food” to balance my metabolism. 

So I checked in with my dietician. She gave me a high-calorie additive (rather like those “gasoline additives” they used to advertise to be poured on top of a tank of fuel in your car) to try. Turns out the additive plays hell with my bowels and is also expensive (health insurance is not covering my medical “food” this round. Which is annoying because a) they covered it last round of treatment, and b) while I do have to eat (which is their argument for not paying for the emergency rations), I would eat nowhere near enough food to equal the cost of this stuff). Dietician K says I can’t just go a General Nutrition Center store and get an off-the-shelf weight gain product. Apparently the powders are impossible to hydrate uniformly, and even small bits of undissolved powder will clog my feeding tube, necessitating a full surgical intervention for repair. 

So I have my work cut out for me. I have to find a way to get more liquid stuffed into my gut. One thing we’ll try after the holidays is substituting a higher-calorie version of the liquids I’m presently using for a couple of the cartons per day. This may be enough to stem the withering of my corpus. But the “2 cal” version of the “1.5 cal” food I’m taking now is slow-moving syrupy goop. It may screw up my digestive tract as much as the additive version. 

We’ll find out after Dietician K gets back from her winter holiday. But radiation oncologist Dr. N came up with a treatment he thinks will stimulate my appetite, suppress my chronic nausea, and kill the pain in my mandible as effectively as the dilaudid. 

He gave me a fat prescription for THC. So it’s going to be very literally a HAPPY holiday season. Oh, and you thought LAST year was the “Best Thanksgiving Ever”! It’s looking like quite the fiesta for next year!

And that’s where things stand at the moment. Not only am I not dead or dying, I am actually recovering and finding a very acceptable quality-of-life. Modern medicine is a truly awesome arsenal of physiological weapons. Now if we could find a way to get such health care to all our citizens, the future would indeed be bright.

And in my little corner of the universe, it is already very bright. I am weak and badly wounded, but I am alive and functioning. I am having a SLAMMING holiday season, cooking, writing, playing guitar, and watching our grown-up kids find their way in the world. I am so grateful to be here that there are no words to convey my joy. 

Rock on, everybody. And if you come here to rock on, why, I have a big-ass bottle of THC. “Merry Christmas” indeed!!!