And what brought on this ridiculous tirade? Well, last week my gastrointestinal tract, which has been generally fussy and difficult to stuff with sufficient calories to maintain my body weight, rebelled rather more actively. Pretty much every 250 ml carton of “tube feeding formula” poured into my (degenerating) feeding tube system induced immediate screaming attacks of acid bubbling out of my stomach and into my throat. A major part of the problem is the long non-functioning of my epiglottis (the little valve that separates respiratory from digestive systems, destroyed in the first round of radiation years ago) and the surgical work-around that pulled a big flap of flesh from my left shoulder over into my throat in an attempt to maintain at least the most critical operations of the system. In practice, the epiglottis, the result of millions of years of evolution, is a smart system. It knows what its job is, and knows how to do it. The slab of shoulder muscle stitched in its place is a dumb system. It can only be there. It can’t function in response to changing needs. Which means that there’s not really anything plugging the plumbing north of my stomach. When too much fluid is present in my gut, there’s nothing fighting to keep it down. It just rises into my throat, stinging painfully along mucosal surfaces not designed to handle digestive fluids. Coupled with digestive processes that seem to be operating at very sludgy velocities, it’s an uncomfortable mess.
The only responses available are pharmaceutical and logistical. And, since those categories also apply to the entire suite of system dysfunctionalities rendered by the cancer and its treatment, I live in a private little world surrounded by bottles of pills, pitchers of water, boxes of liquid food, 12 packs of Gatorade, jars of Vaseline, mountains of paper towels, measuring cups, 60 ml syringes, containers of cough syrup, and more. It’s a freakin’ nightmare, like some dark grocery store from David Lynch’s subconscious on a particularly bad day.
Nor does it end there. While there are difficult problems at the north end of my digestive tract, the south has its own troubles. These largely arise from the deadening effects of chronic consumption of narcotic painkillers. Thus, Lynch has stocked the shelves of this sinister country store with big-ass containers of laxatives that operate on their own cranky schedule.
And that’s still nowhere near the finish line. I got meds for blood pressure, anxiety, sleep induction, chronic and acute nausea, thyroid damage, mucous thinning, and more. I swap out around a dozen clean tubes every day into the permanent piping cut into my airway from just under my chin. The hole into which all this plumbing is fitted runs rather directly into my lungs, making something basic like showering into a dangerous exercise risking pneumonia with every drop of soapy water.
Oh yeah. We haven’t even talked about dental hygiene. From lack of use, my mouth is slowly sealing itself shut. I have a prosthetic exercise device, which diligently applied, can help keep enough of an opening to fit an infant toothbrush through. Of course, in the absence of a tongue, a mouth full of toothpaste is…a mouth full of toothpaste for a long time. For about half an hour after brushing my teeth, I have to sit in a proper position to help the residue slide into my gut rather than my airway. Which latter is just another pathway to pneumonia. Which is now, in what is a quiet period for my cancers, the very immediate and real threat to my life.
Which cycles us back to the opening paragraph to this week’s entry. Except for being the body housing the cancers that kicked off the medical responses that have left me perched here in a nest of stuff prescribed by doctors, dieticians, social workers, nurses, speech pathologists…in other words, everybody except me…I have pretty much nothing to do with anything physical that happens to me. I got Jesse, who between work and school can usually check at around midnight to make sure I’m still breathing. Colin’s generally around to whisk me to the emergency room as needed. Cathy starts her day by arranging my medications so I’m overdose-proof. Molly is often here on weekends to help keep my nest area stocked with essentials.
I’m pretty much in the hands of medical professionals, family, and friends. Leaving me to read books and guitar magazines, write, fart around with photography, bad art and bad guitar and bad song writing, and kick the TV between the Food Channel, History, Discovery, and dark and ominous movies. I’m thinking it’s a good week for Eraserhead, Twin Peaks, Mulholland Drive, and Inland Empire. And, just for variety, I’m gonna throw in Route 666 and Dark City. Just to prove that SOMETHING, anyway, is under my control. Dammit, I may be at the mercy of cancer and the medical profession. But I sure as hell can plug in scary DVDs of my choice. Assuming I’m not having muscle cramps like I got after my two days of very long walks this week after Beth and Maggie flew in from the coast (their arms looked ok) to help get my butt kicked into gear.
Thanks for being here, everyone. Use ‘em while you got ‘em. They are NOT forever. And before you get there, a lot of other stuff is NOT under your control. Rock and roll while we still freakin’ can!!!
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