Vote Now, or Forever Hold Your Peace!

One of the most frightening things I've learned over the past nine months of cancer: in some ways, I know a lot more than the doctors who are treating me.

Scorn, too, for the dieticians I' ve encountered so far--good lord. If it doesn't fit into an algorithm I'm not certain that technical "spccialty" could exist. It stands to good reason that I "know" better than any food expert what works for me, and what feels better/processes better/leaves me more energetic but surely there are some empirical facts by which even a dietician can be useful? No, apparently there aren't...

It was an accident, recently, that started these chains of thought. I stopped at Whole Foods on the way home from lymphedema clinic and bought two Odwallas super protein drinks--chocolate--because they were on sale. I'd had one before and liked it, months back, so the fact that I was hungry and just a short bus ride from home and a feeding tube to slip this stuff into was enough to push the purchase.

Something happened after two Odwallas and a combined rush of 50 grams of protein that I can only describe as normalcy--the feeling that I would be better off sweeping the carpet than napping on it. The idea that it's not acceptable for the glass coffee table to have cup rings on it. The deep, abiding hatred of pubic hair on a toilet seat--mine as much as anyone's--that I have always fought against--these feelings were back. I couldn't not overlook these flaws. I could not excuse them. As surely as policing broken windows and grafitti in a neighborhood led inevitably to a drop in more violent crime, eradicating the unpeakable horror of pubes on white porcelain was a signal that I would no longer be passively accepting shit pie for lunch.

I liked this feeling. My face is still swollen up like I've been repeatedly slapped. There are holes in my neck that drain out stuff from my nose. I blow yellowish crap into tissue to keep from choking. I'm sick of the freak show aspects I have to deal with--I need something to hold onto.

For me, this has always been neatness--at least a relative amount of it. Here in San Francisco, I can only achieve so much of that in a two bedroom apartment. Scott hates reading his mail so it stacks up. I hate putting laundry away so I'm quite laissez about it. No one can apparently shut a clothes closet door here so I've given up trying. We all have problems. But the core of my happiness does touch upon interiors that, while not minimal at its most severe, at least maintain piles of messiness in easy to understand and eventually deal with places or piles. I am not perfect, I don't aspire to it. No one should.,

Yet no dietician, no doctor, no nurse, no organization, no insurance company--no one has made even the smallest, slightest suggestion to me as to how to achieve small bits of normal, and how good even a small one would make me feel. They have poisoned me, and empathized with my puking, and made making appointments with them as difficult as possible (they all conveniently forget that I can't talk on the phone when they refuse to give me an email address to conduct ANY business), but they can't turn around and say--"you know Mark, experiment with your diet and try this or this, maybe it would help...". Not a one of them was competent to suggest that anything other than x number of Nutren boxes a day and x number of Ensure and xxxx target calorie intake was anything but the recipe for smashing success.

I came to San Francisco because of Scott, sure, but also because cancer after-care here was rated so highly--I thought I'd have a better chance of a quicker return to eating, and talking. I thought people here would be more attuned to a wholistic approach, a more patient-centered --dare I say personal? -- way of dealing with the incredible wounds that have been left on every part of me. The fact that I've lost 1/3 of who I was by weight. Fear that screwed a pole of courage into my ass--I figured they could give me real courage.

But they can't, because they won't--my insurance company has paid astounding amounts of money into oncology and radiation and all that bought me was function. Once function was over, fuck me. Good luck. Hope it worked.

Worse, I get small factoids of discussions about my prognosis that never came up while we were in treatment--how no surgical ENT here will touch the wounds I have or the problems with my Indiana surgery--fear of law suits or fear of failure or fear of work. I surmise the fear is that they won't get the 28,000$ my Indiana surgeons got.

I find the words "buying time" come up when I discuss stopping chemo which is making me so sick I lose pounds over a weekend. That's why we're doing it, to buy me time--not to make me better. So why am I buying time just so I can puke into a toilet with a pube on it? Because my happiness is never part of the equation--the idea that a clean toilet is my happiness is unknown to any of these assholes because they haven't bothered to find out.

So, should I keep going with chemo? I vote no, but you can vote as you want below--there are arguments in either direction. They give me more anti-nauseas that might work, and the chemo may knock out a bit more cancer than not, or not--but the argument is without it, we'll never know.

On the flip side, I keep taking Erbitux, which is not chemo, but works against the cancer in a different way and seems to help (the tumors that look like cauliflower on my chest do seem a bit smaller). It only takes an hour a week and I'm inclined to do it. What do you think?

In the meantime, I'm going to keep pushing some high protein drinks into my dietary mix. I've found that I can intake a few hundred more calories per day, I like the flavor, and the idea that I've actually had some energy and done some cleaning and cooking has rendered me feisty enough to tell you that cancer doctors are dumbfucks, and barely worth the money--the incredible amount of money--they've made off of me.,

And I've learned something about myself, too--I have been a prisoner of that fear fuck I've given my poor ass. I'm done with that. I'm ready to be a big boy and step up and fight this differently. I thought I was ready to give up...but there are just too many pubes out there waiting for me to destroy them for that.