I could perhaps write nothing these days but of doctors and visits I have with them--I'm on an endless cycle of meeting new ones and listening to their assessments and then going to the next one.
Today was the Oral Clinic of UCSF, working in combination with the radiation oncologist, to do a final check of my teeth before we begin the chemo/rado combo. Apparently, any potential extractions should be done prior to receiving high dose radiation. Those done after face the potential of creating wounds in the mouth that never heal--osteoradionecrosis--and for me, today, that meant some exposed roots had to be excised.
Never mind that the general dentists didn't believe it was the necessary, or that the oral surgeon's resident didn't believe it was necessary--when the oral surgeon (all 4' 3" of him) stomped into the exam, cursorily examined me and declared that the roots must come out, suddenly everybody wanted my roots out. Perhaps this fellow is not big, but carries a big stick--the resident insisted it had to be done. And they did it. Immediately.
I can't fault the almost McDonald's efficiency of the entire operation. They had my insurance approved, my co-pay snatched out of my pocket and my cutting underway within minutes. I felt as if I'd been taken to ask Aimee Semple McPherson if God loved me, only to be told that such an answer was $96.00 away from likely, please.
It bothered me that of the ten people who agreed, it only took one to disagree, and I had to face the task of not freaking out with my head back, blood trickling down my throat, a trach tube that I had never tested in this manner, and the feeling of being waterboarded (or blood-boarded) and the sensation of drowning. Not to mention that I can't really communicate this to the resident who is joyously twisting and grunting as he pops roots (that's how they put it--to which I typed on my Ipad--"nothing ever pops in dentistry"). The sweet little assistant had the least effective suction unit I've encountered yet--and anyway--stop suctioning my teeth! It's the throat that worries! Stick a wand down there and help a brother out!
But it's over, and for the infinitesimal chance that these upper roots would have caused any problem or been subject to the osteonecrosis when the directed beams of radiation are going to be caressing my mandible, I hope those bottom feeders enjoy the $640 they earned for 1/2 hour of making my life a load less fun today.
I'm not sure that healthy people know this, but you lose a lot of control over your life when you enter the medical system as a supplicant--and I define one's supplicant status as having a disease or condition that compromises or threatens your existence. Cancer is definitely one of them--an advanced case of diabetes certainly qualifies--advanced HIV disease, particularly if your viral load is spiking upward--but when you have been twisted to the ground by fate the medical establishment begins to treat you more and more as if the problem all along has been in your brain. You no longer have nor do you deserve control over your own destiny.
Little oral surgeons can stomp all over your decisions, which have no bearing on the outcome of the debate. People who have no idea what you have gone through to get to the point of meeting them. Indeed today's Napoleon has no idea how quickly my tongue cancer exploded, how I smelled terrible because of the dead tissue in my mouth, how quickly I went from having a body to losing all my muscle, how that felt, how frightened I am now that I've learned the extent of this cancer's aggression and how that fear is driving me to achieve all of this pre-work, all of this crap, so that I can please have some damn radiation and some stupid chemo by April 22nd, when my Indy doctors insisted it had to begin. Please for god's sake you self-involved megalomaniacal assholes--just shut up for a hot second and try to understand my barely controlled hysteria. You should, because a big percentage of it is being fueled by you.
That was the bad news of the day--there was good news too. It actually occurred last night, but it's best effects showed up today.
Even though I nearly Laureled or Hardyed my way through Cal Pacific Hospital, the end result, a wider feeding tube, allowed for two seminal events to happen last night. We stopped at Mollie Stone's in the Castro on the way home and bought a small individual cheesecake and some red potatoes to mash. As Scott went off to Planet Granite to climb with Brian, his trainer, I made some dinner. Some pan fried asparagus and hamburgers with mashed potatoes for him, and afterwards, some very watered down and well blended with lots of milk, mashed potatoes for me--6 tubes worth, down the hatch! Later, four tubes of a yellow liquid that had the undeniable whiff of a New York Cheesecake made me deliriously happy.
It's true that I don't taste in the same way you likely do--although someone recently told me that taste is composed to a high degree of the aroma of food; I do admit I believe that. It seems the less I take in by mouth, the more acute my sense of its inherently lovely scent becomes. I have been driven to distraction by passing the bouquet of a display of Snicker's bars, for goodness sake, I truly lack any discernment worth mentioning, or shame.
And, as I have mentioned before, there's a backwash, up-the-pipe taste in my general being that assures me when I have good coffee or bad (right now, good=the Guatamala Antigua I bought at the Castro Coffee Company; the bad=the Nespresso single cups that just don't match up in complexity), or when another egg-noggy vanilla Nutren hits my system. But all of today I've had in the back of my mouth, the delights of a buttery, milky potato and a milky, forward cheesecake, and it has been an eye roll of pure joy. Note that these two items are--barring the tiny amount of meat loaf I was able to cheat--the only food I've had since my operation on the 4th!
Tonight, I'm hoping some of the lentils I made for Scott are due to be bathed in chicken broth and beat to a pulp in the blender before they slide down my tube. I've supposedly made them spicy--I couldn't taste test, so it's hard to say--and am advised to be careful. But this one decision no MD gets to make. Burn me baby, burn me up with that hot lentil love!
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