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.
Wednesday, September 25, 2013
Friday, September 13, 2013
New Normal, Old Bullshit
The chronology of my new chemo routine is that every 3 weeks I have big infusion day--taxol, carboplatinum and erbitux, which takes about 6 hours. I had that yesterday on the 12th.
For the two weeks in between, I spend an hour getting erbitux, a much lighter load of infusion.
Having had two of the 6 hour infusions, the new normal is that the day after I have one of those, I'm a puking mess. My throat is invaded by gunk, my nose runs, my stomach rebels. That, I'm telling you, is not the way to start a Friday the 13th.
My oncologist, the frustrated comedian Dr. Kramer, does believe this combo is working--but I'm too close to the patient to tell, frankly. Being aware of every quirk and illness twerp that shakes its insouciant ass in my face, I have trouble separating its reality from mine. They seem blended--as if I were never anything but cancerous, as if I had never had another life.
Recently, I've found my old life fading away in ways I couldn't imagine before I started this awesomely bad trip. My food love is fading. My desire for a Payday bar, a Blizzard, an ice cream cake, a hamburger, a steak, some lasagna, truffle fries--far less powerful incentives these days. As complications mount and outcomes slip further into the future, I'm less likely to want and more likely to passively accept.
It was this way the other night when I made meatballs and marinara sauce for Scott. Of course I "wanted" it, and I smell every food item that comes into this house as a reminder of what was, but I didn't WANT it. Instead I cracked open the stupid Nutren 2.0 container and poured that vanilla shit straight into my stomach. I didn't whimper. I didn't complain.
I don't understand, often, why in a room full of people getting infusions of chemo, I'm the guy who can't eat or talk--the other patients having had cancers that at least didn't rob them of these human activities--eating and talking--that form about 90% of life--or at looks and feels that way when you can't do them.
I'm still jealous of those people, but even that primal emotion is fading, replaced by a weary sort of acceptance that the universe is punishing me for something awful I've done and when the universe spanks, you might as well simply bend over.
I'm finding success in shrinking some of the fluid build up in my face through lymphedema therapy, and I enjoy going to see Fiona, the therapist, and watching the tea tea outside of the window as she retrains the fluid and lymph system on how to drain when the old pathways are gone and the new ones are unknown. She's managed to shrink the face measurement by seven centimeters so far, and that has lifted my spirits. I look like a freak, yes, but less like one.
Yet even that therapy has, potentially, opened up new complications, such as new fissures in my reconstructed throat, a tear in my surgical flap in the mouth--not the therapy directly, but perhaps the pressures from wearing a facial compression mask, or from guiding the lymph juice gusher through new channels....
Or maybe just the coincidence of the body heaving a sigh and letting go of things it wanted to--like staying together, in one piece. Perhaps like me, the fight hasn't left it so much apathetic as it has simply left it tired. Maybe I use the word acceptance when I mean resignation, but I don't think so.
I simply don't want to be upset when another date passes me by which I had hoped to eat, and find I still can't. When I've wanted to jog, but realize that's much further away. When I hoped to weight 140 and find it hard to pass 130.
When I've wanted normal, and normal just won't settle on me.
For the two weeks in between, I spend an hour getting erbitux, a much lighter load of infusion.
Having had two of the 6 hour infusions, the new normal is that the day after I have one of those, I'm a puking mess. My throat is invaded by gunk, my nose runs, my stomach rebels. That, I'm telling you, is not the way to start a Friday the 13th.
My oncologist, the frustrated comedian Dr. Kramer, does believe this combo is working--but I'm too close to the patient to tell, frankly. Being aware of every quirk and illness twerp that shakes its insouciant ass in my face, I have trouble separating its reality from mine. They seem blended--as if I were never anything but cancerous, as if I had never had another life.
Recently, I've found my old life fading away in ways I couldn't imagine before I started this awesomely bad trip. My food love is fading. My desire for a Payday bar, a Blizzard, an ice cream cake, a hamburger, a steak, some lasagna, truffle fries--far less powerful incentives these days. As complications mount and outcomes slip further into the future, I'm less likely to want and more likely to passively accept.
It was this way the other night when I made meatballs and marinara sauce for Scott. Of course I "wanted" it, and I smell every food item that comes into this house as a reminder of what was, but I didn't WANT it. Instead I cracked open the stupid Nutren 2.0 container and poured that vanilla shit straight into my stomach. I didn't whimper. I didn't complain.
I don't understand, often, why in a room full of people getting infusions of chemo, I'm the guy who can't eat or talk--the other patients having had cancers that at least didn't rob them of these human activities--eating and talking--that form about 90% of life--or at looks and feels that way when you can't do them.
I'm still jealous of those people, but even that primal emotion is fading, replaced by a weary sort of acceptance that the universe is punishing me for something awful I've done and when the universe spanks, you might as well simply bend over.
I'm finding success in shrinking some of the fluid build up in my face through lymphedema therapy, and I enjoy going to see Fiona, the therapist, and watching the tea tea outside of the window as she retrains the fluid and lymph system on how to drain when the old pathways are gone and the new ones are unknown. She's managed to shrink the face measurement by seven centimeters so far, and that has lifted my spirits. I look like a freak, yes, but less like one.
Yet even that therapy has, potentially, opened up new complications, such as new fissures in my reconstructed throat, a tear in my surgical flap in the mouth--not the therapy directly, but perhaps the pressures from wearing a facial compression mask, or from guiding the lymph juice gusher through new channels....
Or maybe just the coincidence of the body heaving a sigh and letting go of things it wanted to--like staying together, in one piece. Perhaps like me, the fight hasn't left it so much apathetic as it has simply left it tired. Maybe I use the word acceptance when I mean resignation, but I don't think so.
I simply don't want to be upset when another date passes me by which I had hoped to eat, and find I still can't. When I've wanted to jog, but realize that's much further away. When I hoped to weight 140 and find it hard to pass 130.
When I've wanted normal, and normal just won't settle on me.
Tuesday, September 3, 2013
Terroir Cancer
In the NY Times of Tuesday, September 3, is a fun article about the French concept of terroir--the assertion that certain places, some very localized and contained, create the best of a certain type of product. In the gross sense, the Champage region is a terroir, but there are apparently terroirs for all sorts of things, and many quite a bit smaller than an entire region.
It was a funny article to come across because I've been thinking quite a bit about how territorial cancer itself is, and yet how individualized. My first chemo is theoretically thought to have failed because I am one of a small group of people resistant to it and radiation in combination--there's no way to know before, and no way to know for sure. My landscape didn't support the sprout of its particular asparagus of cancer-killing agents.
No one has told me, and I haven't broached the subject, of how much that may have set me back--whether I received any benefit from it or not. There are times when I don't want to know things but simply want to believe things. In this case, I'd like to believe that I at least scythed the top growth of cancer and reduced its ultimate harm to me. I will in fact think or discuss little more about it. The better version of the truth can grow in the shade of this plot of mental land, for all I care, and stay well out of the light of my mind.
I had a particularly nice Labor Day weekend, too. We have a visitor from Indiana, Charles, and last night, a chili dinner with Charles and Terry. Somehow, the very notion of having two people over for dinner was very exotic (this being San Francisco, any more than that would have been mind blowingly engaging but crowded). I still like cooking, and factually, I make some of the best chili in the world--at least the Midwestern version. I have certain talents that are inexplicable. I make the best drip coffee. I have no idea how or why, but it does taste better when I make it than when Charles or Scott makes it, for example.
When I would visit my family for holidays, they would all gasp at how strongly I made coffee and clutch their throats and gag and lolly around and then ask when I was going to make more. Somehow the secondary and not the primary response convinced me I was on to something.
Chili became, and I don't know how, one of those things, too. Granted, I used to make it in Indiana on a regular basis. Chili is a year-round food to me (or was, I'm looking forward to a return to "is") so I've had plenty of practice. But practice can make poor creations just as permanent as good ones. If one's practice in making cookies involves them tasting like hot crap in the end, bets are on they will stay that way with performance.
These are not empty boasts, then--I have witnesses, and in my personal terroir the disparate notes of well dripped caffeine and well combined tomato sauces and chunks serve their acidic notes waft through the air. I also make the best cinnamon jumble cookies, but that's because I don't know anyone else who makes them. In that case, it's mere supposition driving me forward.
My Labor Day was filled with a kind of peace I don't engage with enough--the peace one finds through conversation and liveliness, my day usually being passed in much more quiet and peace than that. I enjoyed the change of pace. I enjoyed taking an afternoon walk and buying a smoothie with Scott and Chuck, down in the Castro--also something I don't do much on my own--in fact, something I never do. I hate going out alone in public as it's hard for me to order anything, I get stared at which I hate, and much as I do enjoy being alone, it can be uninspiring to have a great choco-smoothie and have no one around to say: "this smoothie rocks my ass."
I admit I don't get out of the house into humanity much, so when it happens, it is notable and I see things I don't miss, but are fun artifacts of where I live. I forget that I live in the epicenter of gay life in the U.S. I forget that the weather that surrounds me isn't a national pleasure. I forget that the little thrill I get seeing the fog roll in watching out of the kitchen window isn't the nightly show in Des Moines.
It's good to remember the territory you live in, and what makes it special, and what it produces better than any other place. Especially good if the territory is you.
It was a funny article to come across because I've been thinking quite a bit about how territorial cancer itself is, and yet how individualized. My first chemo is theoretically thought to have failed because I am one of a small group of people resistant to it and radiation in combination--there's no way to know before, and no way to know for sure. My landscape didn't support the sprout of its particular asparagus of cancer-killing agents.
No one has told me, and I haven't broached the subject, of how much that may have set me back--whether I received any benefit from it or not. There are times when I don't want to know things but simply want to believe things. In this case, I'd like to believe that I at least scythed the top growth of cancer and reduced its ultimate harm to me. I will in fact think or discuss little more about it. The better version of the truth can grow in the shade of this plot of mental land, for all I care, and stay well out of the light of my mind.
I had a particularly nice Labor Day weekend, too. We have a visitor from Indiana, Charles, and last night, a chili dinner with Charles and Terry. Somehow, the very notion of having two people over for dinner was very exotic (this being San Francisco, any more than that would have been mind blowingly engaging but crowded). I still like cooking, and factually, I make some of the best chili in the world--at least the Midwestern version. I have certain talents that are inexplicable. I make the best drip coffee. I have no idea how or why, but it does taste better when I make it than when Charles or Scott makes it, for example.
When I would visit my family for holidays, they would all gasp at how strongly I made coffee and clutch their throats and gag and lolly around and then ask when I was going to make more. Somehow the secondary and not the primary response convinced me I was on to something.
Chili became, and I don't know how, one of those things, too. Granted, I used to make it in Indiana on a regular basis. Chili is a year-round food to me (or was, I'm looking forward to a return to "is") so I've had plenty of practice. But practice can make poor creations just as permanent as good ones. If one's practice in making cookies involves them tasting like hot crap in the end, bets are on they will stay that way with performance.
These are not empty boasts, then--I have witnesses, and in my personal terroir the disparate notes of well dripped caffeine and well combined tomato sauces and chunks serve their acidic notes waft through the air. I also make the best cinnamon jumble cookies, but that's because I don't know anyone else who makes them. In that case, it's mere supposition driving me forward.
My Labor Day was filled with a kind of peace I don't engage with enough--the peace one finds through conversation and liveliness, my day usually being passed in much more quiet and peace than that. I enjoyed the change of pace. I enjoyed taking an afternoon walk and buying a smoothie with Scott and Chuck, down in the Castro--also something I don't do much on my own--in fact, something I never do. I hate going out alone in public as it's hard for me to order anything, I get stared at which I hate, and much as I do enjoy being alone, it can be uninspiring to have a great choco-smoothie and have no one around to say: "this smoothie rocks my ass."
I admit I don't get out of the house into humanity much, so when it happens, it is notable and I see things I don't miss, but are fun artifacts of where I live. I forget that I live in the epicenter of gay life in the U.S. I forget that the weather that surrounds me isn't a national pleasure. I forget that the little thrill I get seeing the fog roll in watching out of the kitchen window isn't the nightly show in Des Moines.
It's good to remember the territory you live in, and what makes it special, and what it produces better than any other place. Especially good if the territory is you.
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