Finally, today is the eve of the first radiation and first chemo treatment--I think. Let's say that as of 10am California time, I've received no notices of moved dates, wound failure delays, or mechanical breakdown.
I wish this process could have simply started the day after surgery was over, when I was still pliant, and perhaps half-drugged, and grateful to no longer be in such constant pain. Then they could have pinned me down like an insect specimen and given me 20 minutes of masked hell, and they could have set me in a barcalounger with an IV for 6 hours and what would I have done? Complied, rather like a sheep following a dog's lead. Weakly, I may have objected, but soon enough I'd have been used to it, and done with much of it, by now.
As it is, I have to admit to a growing sense of anxiety, or fear, or just dread. Knowing that radiation will build up, and burn and the likelihood of sores is high, and the possibility of constriction and thicker mucous (how it could get thicker, I don't know) is high, and real.
I did find, though, that during the dry run there was a mantra that helped me through, provided to me by my niece, my sister's eldest daughter: Channel your inner Price.
For anyone who has dealt wth my family, she's referring to our legendary stubbornness and unwillingness to admit minor defeats like fear or flaws in our perceptual processes like overhyping what is to come. The inner Price is, to borrow a phrase from that movie "Fried Green Tomatoes." our inner Towanda.
Invoking it, I stopped worrying about anything but breathing and relaxing, and I closed my eyes while Billie Holiday was croaking out some jacked up version of some song, and the ceiling twinkled at me like a happy idiot. The huge machine revolved around me, lifting here, and there, playing a perverted game of peek-a-boo over the table's edge, and I, inner-Priced, was as still as snow at midnight.
Tomorrow, though, is real. The clown nose horn in my hand has purpose. The machine is on. It has been set to remember where I need to be dosed and how much. It will think of nothing but delivering cargo to loading dock, ray to errant cell. Then chemo, where an indiscriminate fluid will start killing cells and keep doing so long enough to cause concerns that I'll hurl, easily, and a fistful of drugs to control that.
Among those drugs, I found in reviewing them yesterday, is an anti-anxiety medicine--and typically, it's not inner-Price to need those sorts of things. We are tough, native, two-feet-standers, no struts needed. But I plan on taking this at 6am, as I leave to board the bus that takes me to the machine. I plan on finding myself not so resistant and less inclined to hyperventilate as they pin the mask down tightly, and adjust my head 15 times until it's as straight as they want.
I am apprehensive. Not just about the mechanics of the thing, the 32 sessions that will follow tomorrow's radiation, but of what happens afterwards. If it works. If I ever go back to normal.
The first few days after surgery before I saw what I looked like, I thought of normal as a thing that I'd, rubberband that I am, rebound to immediately. That I'd look as I did, with a new jaw, and that swelling went down in days instead of months, that there'd be relatively immediate weight gains.
Now, the longer I am without normal, the more I wonder how to get back to it, as if I'd lost a path by slight miscalculation that has closed behind me. Technically, it has closed. That normal will never be the normal again. The picture that Scott has on his phone of a guy with grey/blonde hair, smiling, after a run in his running clothes--I'll never be that guy again. Even at 52, that guy is way too naive for the life I live now. His body is not achievable.
I may come back to a similar state, but I don't know when and right now I don't know how. And in addition to thinking of the machines, and the inexorable poisonous drip, and the way I may feel tomorrow night, when they pin the mask over my face, I will think of him--the latest ass in a line of them I've managed to love and lose.
If I paint bleakly here, it's because I find it makes reality so much easier to bear. In real terms, the radiation treatment will go fairly quickly, and because I'm new, the people at the infusion center at Dr. Kramer's office will likely be extra helpful. I'll probably have a good time, and with any luck, I'll remember to pick up the book on Lincoln I've been reading to take along, and the Ipad, and the phone, and Scott's noise canceling headphones he insisted I keep here while he travels to Zurich and Germany for this week.
It's hard for him to be away, and hard for him to understand that part of me is glad he is at the moment--if I make it through this as I think I will, then great, I can tell him what a piece of cake it was, or how boring it was, or how it was not at all the trial we believed. If it bothers me, I can fall apart for the five minutes I allot to such things, and without explanation to him, pull my stuffing back in tighter and get on with it as I will.
Ultimately, cancer is a lonely thing. It's too personal a possession to readily share, even with someone dying to share one's very essence. It lives in the smallest crevices of the body and requires that even an army be parsed down single file to go after it in its hiding places. Better me, and my sword, advance against the dark of it, when I find it, and defeat it. Then I can tell you better what this awful journey has actually meant.
Monday, April 29, 2013
Saturday, April 27, 2013
Tongue-less Cancericans
Number of Americans newly diagnosed with cancer in 2012: 1.6 million, plus.
I've been trying to get out of my own head this week, a place I'm naturally locked into to pretty tightly. My efforts, while not in vain, are not helped by the fact that it's hard for me to talk, and seemingly not hard for people to inform me quickly that they can't understand what I'm saying. If anyone will lock you into silence and contemplation more quickly than a million "huhs?" I can't think of what it would be.
For some reason, the medical establishment in this world has a delight in trying to call me. Even after they've met me, even after I've begged them not to do so, calling me is like their idea of a late night frat prank. They leave me call back numbers, long, involved messages usually evoking a sense of urgency to their purpose. "We need to know..." or "....so we have to hear from you before we file...". Yet no one finishes any message with, please email us, or emails me, in the first place.
Sometimes, honestly, this makes me so angry I just want to throw something. What part of 85% of tongue missing didn't you get the first damn time? Other times, I feel like I'm being discriminated against, or chosen for a special form of punishment. Try walking up to a receptionist in a crowded waiting room who asks for your name when your name is an impossible thing to properly say.
Among the 1.6 million plus, are likely 1.6 million plus variations of experience. We cancericans are a diverse lot, something I've been learning as I enter and exit the cancer center where I'll be having radiation. We may all have a starting point in common, but where it goes, how it's detected, and the results we manage are startlingly different.
Sitting in the waiting room of the main clinic where I see Joey, or the dude surgeon, the people around me are head and neck cancer patients. Even in this group, so far, I'm a subset. The other day I could hear a conversation amongst a pair of patients waiting who were planning either a Wendy's or IHOP visit after their doctor time was done. Now, admittedly, in pre-cancer life I thought eating at IHOP meant one hated oneself, but what I wouldn't give to go eat some kind of sugar bomb funnel cake with cheap jam and canned whipped cream under a blanket of fake maple syrup...well, at least once.
Even there, the other people around me are engaged in conversation with their partners, or respond freely when the receptionists ask them questions, think of whether a double or a funnel cake would do better for them after the day's work is over.
Thus, there's no way to create an advocacy for them, or for me, that's any greater than the American Cancer Society--no official minority status by which I could invoke the Americans with Disabilities Act and start threatening to sue people who persist in calling me.
Instead, I realize, I'm pushed further into isolation and further into my own head. Sometimes, while I'm watching television with Scott, I want to talk back to a commercial. Pre-cancer, that was one of my favorite things to do--and make commentary about the ridiculous plot line of a show or the muffin top on the Wheel of Fortune contestant, and how the sateen top she's wearing did not heed the warning of the camera's ten pounds, or the unforgiving nature of cheap shiny material and the intensity of klieg lighting.
That's a lot of typing, and the moment passes quickly. Where quickly dispensed with as a bit of ridicule as a camera pans, it becomes a cumbersome description on a keyboard, even with my very decent typing skills.
Some of the things I would have been silent about before cancer are still handled that way. The past couple of weeks, I've been having odd headaches, and occasionally trouble sleeping. As per usual, I start, in my own head, ticking off the worst of the possible reasons why this is happening and examine the evidence to debunk or support why one horror or another might be causing my problems.
This set of problems I think I've finally traced, though: coffee. Pre-cancer, I was a coffee hound, and a slight coffee snob. I had several cups in the morning, at least one at work, and several cups with and after dinner. I've had that habit in my life from the earliest age, sharing a coffee (in my case, half milk), with my Aunt Effie as she babysat me when I was four. My family believed that a meal without coffee was incomplete.
Yet lately, my taste for it, and my system of delivery down the tube, have changed the game--I've been running on one cup a day. So this is my diagnosis--caffeine withdrawal. A 52 year lifetime of coffee whittled to a cup, surely I can expect some fallout--and I honestly think that's it. Not more cancer, not cancer revaunch, not another life-threatner, but a systemic reaction to a former substance abuse problem, coming to rest.
I finally typed that out to Scott today, at 4:30am, as he tried to figure out why I was up, and i did too--this was my breakthrough twice. First that I self-diagnosed and second that I confessed it--via keyboard, but imagine how difficult the preceding couple of paragraphs would be to say.
It is a reminder of what's ahead--or not, just ahead, but here now. The constant battle to pull out of myself when I'm the one person I can converse with freely. To include others in a world that is full of noise and stimulus, so much so that I'm bursting to talk about it, but simply can't do so in a facile manner.
There's so much I see on each bus ride ride I take to and from, up and down Divisadero Street, and then at the Cancer Center, so many people I'm curious about who are always swirling about the lobby, and then there's the texture of the sunlight, the smell of the Vietnamese food, the curious colors of buildings here in San Francisco, the sharpness of the wind, the very fact that food is so central to advertising, and interaction, the sounds that people make when they wait, the way they pull their phones out at the least delay, the clothing, the number of people who are disabled, the competition they make of loading onto the bus, the quiet way I integrate, and watch, and never talk to any of them about any of it.
I've been trying to get out of my own head this week, a place I'm naturally locked into to pretty tightly. My efforts, while not in vain, are not helped by the fact that it's hard for me to talk, and seemingly not hard for people to inform me quickly that they can't understand what I'm saying. If anyone will lock you into silence and contemplation more quickly than a million "huhs?" I can't think of what it would be.
For some reason, the medical establishment in this world has a delight in trying to call me. Even after they've met me, even after I've begged them not to do so, calling me is like their idea of a late night frat prank. They leave me call back numbers, long, involved messages usually evoking a sense of urgency to their purpose. "We need to know..." or "....so we have to hear from you before we file...". Yet no one finishes any message with, please email us, or emails me, in the first place.
Sometimes, honestly, this makes me so angry I just want to throw something. What part of 85% of tongue missing didn't you get the first damn time? Other times, I feel like I'm being discriminated against, or chosen for a special form of punishment. Try walking up to a receptionist in a crowded waiting room who asks for your name when your name is an impossible thing to properly say.
Among the 1.6 million plus, are likely 1.6 million plus variations of experience. We cancericans are a diverse lot, something I've been learning as I enter and exit the cancer center where I'll be having radiation. We may all have a starting point in common, but where it goes, how it's detected, and the results we manage are startlingly different.
Sitting in the waiting room of the main clinic where I see Joey, or the dude surgeon, the people around me are head and neck cancer patients. Even in this group, so far, I'm a subset. The other day I could hear a conversation amongst a pair of patients waiting who were planning either a Wendy's or IHOP visit after their doctor time was done. Now, admittedly, in pre-cancer life I thought eating at IHOP meant one hated oneself, but what I wouldn't give to go eat some kind of sugar bomb funnel cake with cheap jam and canned whipped cream under a blanket of fake maple syrup...well, at least once.
Even there, the other people around me are engaged in conversation with their partners, or respond freely when the receptionists ask them questions, think of whether a double or a funnel cake would do better for them after the day's work is over.
Thus, there's no way to create an advocacy for them, or for me, that's any greater than the American Cancer Society--no official minority status by which I could invoke the Americans with Disabilities Act and start threatening to sue people who persist in calling me.
Instead, I realize, I'm pushed further into isolation and further into my own head. Sometimes, while I'm watching television with Scott, I want to talk back to a commercial. Pre-cancer, that was one of my favorite things to do--and make commentary about the ridiculous plot line of a show or the muffin top on the Wheel of Fortune contestant, and how the sateen top she's wearing did not heed the warning of the camera's ten pounds, or the unforgiving nature of cheap shiny material and the intensity of klieg lighting.
That's a lot of typing, and the moment passes quickly. Where quickly dispensed with as a bit of ridicule as a camera pans, it becomes a cumbersome description on a keyboard, even with my very decent typing skills.
Some of the things I would have been silent about before cancer are still handled that way. The past couple of weeks, I've been having odd headaches, and occasionally trouble sleeping. As per usual, I start, in my own head, ticking off the worst of the possible reasons why this is happening and examine the evidence to debunk or support why one horror or another might be causing my problems.
This set of problems I think I've finally traced, though: coffee. Pre-cancer, I was a coffee hound, and a slight coffee snob. I had several cups in the morning, at least one at work, and several cups with and after dinner. I've had that habit in my life from the earliest age, sharing a coffee (in my case, half milk), with my Aunt Effie as she babysat me when I was four. My family believed that a meal without coffee was incomplete.
Yet lately, my taste for it, and my system of delivery down the tube, have changed the game--I've been running on one cup a day. So this is my diagnosis--caffeine withdrawal. A 52 year lifetime of coffee whittled to a cup, surely I can expect some fallout--and I honestly think that's it. Not more cancer, not cancer revaunch, not another life-threatner, but a systemic reaction to a former substance abuse problem, coming to rest.
I finally typed that out to Scott today, at 4:30am, as he tried to figure out why I was up, and i did too--this was my breakthrough twice. First that I self-diagnosed and second that I confessed it--via keyboard, but imagine how difficult the preceding couple of paragraphs would be to say.
It is a reminder of what's ahead--or not, just ahead, but here now. The constant battle to pull out of myself when I'm the one person I can converse with freely. To include others in a world that is full of noise and stimulus, so much so that I'm bursting to talk about it, but simply can't do so in a facile manner.
There's so much I see on each bus ride ride I take to and from, up and down Divisadero Street, and then at the Cancer Center, so many people I'm curious about who are always swirling about the lobby, and then there's the texture of the sunlight, the smell of the Vietnamese food, the curious colors of buildings here in San Francisco, the sharpness of the wind, the very fact that food is so central to advertising, and interaction, the sounds that people make when they wait, the way they pull their phones out at the least delay, the clothing, the number of people who are disabled, the competition they make of loading onto the bus, the quiet way I integrate, and watch, and never talk to any of them about any of it.
Thursday, April 25, 2013
PITA
No, I haven't made the jump to eating breads of any type, much as I would love to--PITA is my favorite acronym, for pain in the ass.
I thought of it several times yesterday as I had a day that was as pita as they come.
Although my neck situation has delayed the beginning of radiation and chemo a few days (and I haven't gotten final clearance), we did the dry run of radiation and it doesn't look like it's going to be fun. I was there, the mask was there, the flat unpadded table was there--and again they pinned me down with the mask, flat on my back, shirtless, in a cold room. There was Big Band music and the ceiling looked like stars--those were advances in the basic humanity of the situation, and they put what felt like a clown nose in my right hand--once the machine starts, they leave the room, and the only way to indicate distress is to squeeze the ball which honks.
Why did I have the idea that this would be done comfortably? I actually thought I might sit in a chair and the machine might pop up in front of me like an alien and zap zap zap while I sat there lost in my dumbfounded thoughts. Or a lazy boy--they love for you to sit in recliners while you get chemo, so why must I be pinned down on an unpadded table and why the hell is this room like a refrigerator?
Cold gets me easily these days--a bit of chill and I'm ready for a down parka. My body temperature has, along with my weight, dropped a bit. I average 96.4 when I see the doctors, and I just don't burn quite as brightly as before. My hands are constantly cold, though oddly enough, when it was 80 here the other day, I thought I'd die of the heat. I'm a petite flower these days, I suppose, requiring the Goldilocks temperature to thrive.
Anyway, the only non-pita things about daily radiation? Nice techs and it only takes around 20 minutes a shot--but it's 5 days a week. That's right, Monday through Friday, like a job.
PITA, too, that I had to return to the clinic in the afternoon to see the breezy surgeon, who was to confer upon the neck situation and how best to handle it. He came in from his day's surgery work, and even though I was his only patient to see in-office, still managed to do so 20 minutes late. As I finally entered the exam room, and when he finally showed up, he looked at me and said: "you're stylin' today, buddy."
Ok, I admit I was styling a bit--but the problem with styling is that clothes should look good on you, not hang as if one is oneself a hanger--and that's what clothes do on me right now. I could zip by in a Dolce and Gabbana skinny suit (and it would fit because there's no meat on me right now), and it would look like a rack of cloth being pushed down Seventh Avenue in NYC. Sorry, I'm not joking, it's just the reality of the situation.
In comparison to the rest of the waiting room today, my charcoal chambray pants, saucony black and orange sneakers, black Ben Sherman Plectrum polo and my sharp Mammoth charcoal grey and red lined sweater are all good things to wear. They are styling. That much, I admit.
But one is not styling with a seeping hole in one's neck. One which our friend looked at, poked at, caused me to half scream and then said: "sorry, buddy." He took a five minute phone call and then turned back around and said: "Wound failure..." as if that were the next sentence he meant to utter on the terminated phone conversation.
So, I have wound failure--improper healing in this spot, and now I have to pack it with material which abrides the wound surface and prompts it to re=initiate the healing sequence. "Sorry that you're having more problems, buddy, but I didn't think I'd see you for two months." Me too, PITA, me too...
I shouldn't rag on this guy so much, I know--the problem is that he's a dude, and I'm not. Because he recognizes me as another male, he speaks to me as he would normally speak to any dude bro who was next in line for the pisser at a football stadium. It's going to take a while and dudes will, as dudes are wont to do, dude speak to pass the time and forget that they massively have to take a leak.
Lately, I've been watching a lot of old Entourage episodes. That's a show that many people are surprised I like--and it surprises me too but for one important fact: the show hinges upon guys who are deeply committed to one another. And that's a relationship I've never had with another man, and it fascinates me.
I truly have never hung with a guy posse--at least one that wasn't self-identified as a gay one, I've never really had friends who were dude-ish, whose main criteria for one's cool wasn't a bon mot, but a beer and brat. So watching that unfold in this show is something I don't get tired of, and that I find endlessly fascinating.
I've always been a woman's man, I love hanging out with women, chatting with them, working with them, working for them--I choose women doctors whenever possible. For whatever reason I have zero sexual interest in women, but will die if don't get to vote for Hilary Clinton as president in 2016.
I hear that women are the ultimate PITA. I may be too. Yesterday, I thought of snappy answers to make to the doctor's inane comments, but I refrained. I was tired, somewhat traumatized, and I just wanted it over with--something like a blind date between a hot chick and a hot freak arranged as a dude favor. And just like our hot chick in the metaphor, I had no intention of putting out.
Instead, today, I'm poking material in wound failures in my body, hoping I get to be irradiated on schedule, and with better grace, than my PITA Wednesday indicated.
I truly have never hung with a guy posse--at least one that wasn't self-identified as a gay one, I've never really had friends who were dude-ish, whose main criteria for one's cool wasn't a bon mot, but a beer and brat. So watching that unfold in this show is something I don't get tired of, and that I find endlessly fascinating.
I've always been a woman's man, I love hanging out with women, chatting with them, working with them, working for them--I choose women doctors whenever possible. For whatever reason I have zero sexual interest in women, but will die if don't get to vote for Hilary Clinton as president in 2016.
I hear that women are the ultimate PITA. I may be too. Yesterday, I thought of snappy answers to make to the doctor's inane comments, but I refrained. I was tired, somewhat traumatized, and I just wanted it over with--something like a blind date between a hot chick and a hot freak arranged as a dude favor. And just like our hot chick in the metaphor, I had no intention of putting out.
Instead, today, I'm poking material in wound failures in my body, hoping I get to be irradiated on schedule, and with better grace, than my PITA Wednesday indicated.
Wednesday, April 24, 2013
The Body, Unelectric
There is a certain thoughtlessness any of us have when using certain parts of our body--need the salt? stretch, reach. Open a cupboard? bend or stretch upwards. The steady heel/toe motion en promenade, up or down the street.
Like anyone, I took m body for granted in a million ways each day and didn't keep a diary of my myriad oversights. Good thing, too: Had I done so, I'd probably be depressed if I reviewed it.
Yesterday, I started with a complete and utter triumph. I had a swallowing test, which is a process by which one stands in front of an x-ray machine while taking small amounts of liquid in various states of thickness, sometimes yogurt-y, leading up to applesauce, and the technician runs film of your ability to swallow barium-filled things. Trust me, you don't swallow any of this stuff for the taste.
My swallow test was a 5 star pass! I made it through the applesauce sauce phase without allowing anything down the wrong pipe--and better, I made Joey the therapist smile without telling jokes--which was helpful to me, as I forgot to cap my trach tube before I left the apartment and talking was more difficult than normal. I now have official directions to expand my repertoire of experiments in swallowing to all sorts of soft foods--yogurts, smoothies, mashed potatoes with gravy--albeit in very tiny increments. Let's not complain of size, though, when faced with what amounts to a smorgasbord in my Nutren-fed life.
What was particularly amazing, yesterday, was how wonderfully zesty cheap applesauce with barium actually tasted to me. By the time we worked up to that texture, barium was pretty much beside the point--so my taste focus was on the applesauce itself. Had you told me 6 months ago that such a quotidian product would taste like a gourmet meal I'd have truly laughed. And then there is--thank you universe!--the fact that my taste functions are still so acute--even without all that tongue surface, i detect small notes and react to flavor as if it's atomically powered. It must be the poet in me that allows the small metaphors for good to string together into the great theme of wow.
This does work against me, though--recently, my daily Nutren, dependably vanilla fake egg noggishly flavored, as been grossing me out with decidedly unplesaant metallic edge. The diagnosis? Like most tube-fed, it's time for me to take a daily acid blocker. And I've been advised to slow down the 2 minute way I let it slide in.
When I leave appointments with UCSF, I usually stand waiting for the 24 Divisadero bus at Sutter and Divisadero, in front of a restaurant called My Father's Kitchen, which bills itself as Vietnamese comfort food. It smells awesome, in case you're wondering--so much so that until yesterday, I never allowed myself to read the menu, afraid I'd never have the chance to find out how awesome it might be (and it's always busy which I do take as a good sign). Yesterday, though, riding Cloud Nine like my personal nag, I did read it. And I can't wait.
I arrived home with Scott's dinner in tow, and cleaned the toilet and turned on Ina Garten on the Food Network in time to find out how to make chocolate sorbet and Butternut Squash risotto, warm duck breast salad, and the tail end of how to make a lemonish-blueberry cake with a streusel topping. I like Ina. She's not skinny and good lord that woman loves butter. Better, everything she makes is elegant and slightly over the top and yet I know I'd want to eat it.
I felt a wetness on the right side of my neck while Ina was reducing yet another stick of butter to prepare her risotto. Pulling my hand away from my neck, it wasn't water, but a slightly sticky, and not exactly clear liquid but where was it coming from?
As I checked the bathroom mirror I saw, to my consternation, that my neck bisection scar seemed to be tearing up with some odd beige seepage. I don't know how, I don't know why, it simply happened. By now, I have a million theories as to why, but to recount all of those would bore both of us exceedingly. Offically, until I see the doctors today, this is a mystery.
I have seeped from a couple of spots on my body, at times, and in circumstances that have defied easy explanation. Considering I was bisected at the neck, perhaps this is no surprise; my neck, in its process of healing, has recently felt very tight, and occasionally hard to move left-right in normal process. Up-down being not much easier, and my range of motion limited by the fact that one month ago, the whole thing was sliced.
Coming back from surgery and a bit of forced lethargy, little that I do can be taken for granted. When I first visited Scott here on top of the big hill, I didn't have much trouble walking up and down 18th Street, or facing the sidewalk incline as one departs the bus at the top, or taking the stroll over the crest and down to La Boulange, in Cole Valley, to breakfast on oatmeal with the stroller set. The easiness of all that is completely gone.
I have to parse out when I go down the hill and I've temporarily given up on climbing it--my limits are clear at the moment, and 30 muscle pounds down, they do not include the incline. Indeed, stepping out more than once a day from the apartment is effort, and takes some thought and reason--and I do it, but not without some occasionally vigorous enticement. At home, I do housework in pieces, sometimes broken up by the odd wetness of a seepage where it's never happened before, on the body unelectric, merely cut apart and rewired oddly.
I have to add to the list of what I take with me on excursions, I think. Now I take ipad and keyboard both for amusement and emergency communication. My phone, though that's more for typing notes than for making calls, or texting my voice otherwise known as Scott.
I'll have to have some gauze with me, a few pads, some tape--perhaps a bit of neosporin. Locks for doors that circumstance opens on me, to pack alongside the tissue for the endless stream of stuff I have to spit out discretely, blow out as best I can or wipe when I can't quite feel it. Creaky and ill fit as any steam pipe, clanking down the street, recovery in motion.
Like anyone, I took m body for granted in a million ways each day and didn't keep a diary of my myriad oversights. Good thing, too: Had I done so, I'd probably be depressed if I reviewed it.
Yesterday, I started with a complete and utter triumph. I had a swallowing test, which is a process by which one stands in front of an x-ray machine while taking small amounts of liquid in various states of thickness, sometimes yogurt-y, leading up to applesauce, and the technician runs film of your ability to swallow barium-filled things. Trust me, you don't swallow any of this stuff for the taste.
My swallow test was a 5 star pass! I made it through the applesauce sauce phase without allowing anything down the wrong pipe--and better, I made Joey the therapist smile without telling jokes--which was helpful to me, as I forgot to cap my trach tube before I left the apartment and talking was more difficult than normal. I now have official directions to expand my repertoire of experiments in swallowing to all sorts of soft foods--yogurts, smoothies, mashed potatoes with gravy--albeit in very tiny increments. Let's not complain of size, though, when faced with what amounts to a smorgasbord in my Nutren-fed life.
What was particularly amazing, yesterday, was how wonderfully zesty cheap applesauce with barium actually tasted to me. By the time we worked up to that texture, barium was pretty much beside the point--so my taste focus was on the applesauce itself. Had you told me 6 months ago that such a quotidian product would taste like a gourmet meal I'd have truly laughed. And then there is--thank you universe!--the fact that my taste functions are still so acute--even without all that tongue surface, i detect small notes and react to flavor as if it's atomically powered. It must be the poet in me that allows the small metaphors for good to string together into the great theme of wow.
This does work against me, though--recently, my daily Nutren, dependably vanilla fake egg noggishly flavored, as been grossing me out with decidedly unplesaant metallic edge. The diagnosis? Like most tube-fed, it's time for me to take a daily acid blocker. And I've been advised to slow down the 2 minute way I let it slide in.
When I leave appointments with UCSF, I usually stand waiting for the 24 Divisadero bus at Sutter and Divisadero, in front of a restaurant called My Father's Kitchen, which bills itself as Vietnamese comfort food. It smells awesome, in case you're wondering--so much so that until yesterday, I never allowed myself to read the menu, afraid I'd never have the chance to find out how awesome it might be (and it's always busy which I do take as a good sign). Yesterday, though, riding Cloud Nine like my personal nag, I did read it. And I can't wait.
I arrived home with Scott's dinner in tow, and cleaned the toilet and turned on Ina Garten on the Food Network in time to find out how to make chocolate sorbet and Butternut Squash risotto, warm duck breast salad, and the tail end of how to make a lemonish-blueberry cake with a streusel topping. I like Ina. She's not skinny and good lord that woman loves butter. Better, everything she makes is elegant and slightly over the top and yet I know I'd want to eat it.
I felt a wetness on the right side of my neck while Ina was reducing yet another stick of butter to prepare her risotto. Pulling my hand away from my neck, it wasn't water, but a slightly sticky, and not exactly clear liquid but where was it coming from?
As I checked the bathroom mirror I saw, to my consternation, that my neck bisection scar seemed to be tearing up with some odd beige seepage. I don't know how, I don't know why, it simply happened. By now, I have a million theories as to why, but to recount all of those would bore both of us exceedingly. Offically, until I see the doctors today, this is a mystery.
I have seeped from a couple of spots on my body, at times, and in circumstances that have defied easy explanation. Considering I was bisected at the neck, perhaps this is no surprise; my neck, in its process of healing, has recently felt very tight, and occasionally hard to move left-right in normal process. Up-down being not much easier, and my range of motion limited by the fact that one month ago, the whole thing was sliced.
Coming back from surgery and a bit of forced lethargy, little that I do can be taken for granted. When I first visited Scott here on top of the big hill, I didn't have much trouble walking up and down 18th Street, or facing the sidewalk incline as one departs the bus at the top, or taking the stroll over the crest and down to La Boulange, in Cole Valley, to breakfast on oatmeal with the stroller set. The easiness of all that is completely gone.
I have to parse out when I go down the hill and I've temporarily given up on climbing it--my limits are clear at the moment, and 30 muscle pounds down, they do not include the incline. Indeed, stepping out more than once a day from the apartment is effort, and takes some thought and reason--and I do it, but not without some occasionally vigorous enticement. At home, I do housework in pieces, sometimes broken up by the odd wetness of a seepage where it's never happened before, on the body unelectric, merely cut apart and rewired oddly.
I have to add to the list of what I take with me on excursions, I think. Now I take ipad and keyboard both for amusement and emergency communication. My phone, though that's more for typing notes than for making calls, or texting my voice otherwise known as Scott.
I'll have to have some gauze with me, a few pads, some tape--perhaps a bit of neosporin. Locks for doors that circumstance opens on me, to pack alongside the tissue for the endless stream of stuff I have to spit out discretely, blow out as best I can or wipe when I can't quite feel it. Creaky and ill fit as any steam pipe, clanking down the street, recovery in motion.
Monday, April 22, 2013
Singing School
Nor is there singing school but studying
Monuments of its own magnificence;
And therefore I have sailed the seas and come
To the holy city of Byzantium.
WB Yeats, "Sailing to Byzantium"
- See more at: http://www.poets.org/viewmedia.php/prmMID/20310#sthash.KCeXLQHh.dpuf
Have you ever wondered what your monument of magnificence is, will or would be? I have. For me it would be an incredible array of poems that people relate to as having captured ephemeral moments that are nonetheless universally true and applicable--like how you can leaf through "Ariel" by Sylvia Plath and lines leap out at you that are perfect, that encapusulate an emotion or a situation beautifully.
I have had the opposite situation this week with my body, which doesn't seem to want to conform to my ideas of magnificence. On the eve of radiation and chemo, I find that every time I have one of these Nutren snacks, I hate the flavor, it all tastes like metal, and I'm finding it difficult to force more of it down my gullet.
This is a most inconvenient time for this, too--this is the zero hour. We don't have time to change or wait, it is time to go. And to go means that all support systems, mental, nutritional, medical, psychological--they're all ready to march forward in time, in step, with no hesitation. I just don't know if they are.
I need to think, and reflect, on what brings me here to Byzantium--talk to the emperor, talk to the wizard, get better. To allow life to return to my body where it fled, before, and reinvigorate my belief that no matter what happens, I deserve to live, and live well. I may have lost sight of that, temporarily--this may have become buried in the typical rounds of life.
I have felt like a merry go round horse a few days here, some days I've felt like a guinea pig, and others, like a punching bag for the disdain or anxiety of doctors. While I have an overwhelming good sense of those who are caring for me, there are a couple of team members I've encountered who are not, I think, on quite the same page. Certainly, I'm spoiled by the 90% good I've encountered versus the 10% whatever--especially as I've encountered no bad. But incredible doctors make mediocre ones look terrible by comparison....medicine is too personal, even behind all those cold machines, to make up for what a person might lack in personality or empathy.
And I recognize that this journey is changing me too in many ways, that I'm not impermeable whatsoever. I have spent what seems like a year and is barely over a month straining to get to this point where there are about to try to kill whatever is left of this cancer. Perhaps that causes me apprehension--worry that they won't kill it, that this is it, that the improvements I've made are all I can expect.
I find that healing is bringing not surprises but realities that I'd ill considered. Of course when they bisect your neck, you should expect to lose some mobility up and down as you heal--but I hadn't thought of it--the tightness of the muscles, the neck aches I've had in the back of my neck....my head lately pounding.
Yet I'm well...my temperature, my blood pressure, my attitude--all where they should be....
This is no country for old men, indeed. This is just pre-prize fight, and there is doubt in me, and I have to square that away with what I know to be true. That I've come to a great place to be treated, and I've arrived in good time, to a warm welcome, that a treatment plan has my name on it. Radiation is ready, chemical infusion is ready, drugs for nausea have been purchased. I have to show up and help it all work by my belief.
I have to study the magnificence of my monuments. I have to believe.
Monuments of its own magnificence;
And therefore I have sailed the seas and come
To the holy city of Byzantium.
WB Yeats, "Sailing to Byzantium"
- See more at: http://www.poets.org/viewmedia.php/prmMID/20310#sthash.KCeXLQHh.dpuf
Have you ever wondered what your monument of magnificence is, will or would be? I have. For me it would be an incredible array of poems that people relate to as having captured ephemeral moments that are nonetheless universally true and applicable--like how you can leaf through "Ariel" by Sylvia Plath and lines leap out at you that are perfect, that encapusulate an emotion or a situation beautifully.
I have had the opposite situation this week with my body, which doesn't seem to want to conform to my ideas of magnificence. On the eve of radiation and chemo, I find that every time I have one of these Nutren snacks, I hate the flavor, it all tastes like metal, and I'm finding it difficult to force more of it down my gullet.
This is a most inconvenient time for this, too--this is the zero hour. We don't have time to change or wait, it is time to go. And to go means that all support systems, mental, nutritional, medical, psychological--they're all ready to march forward in time, in step, with no hesitation. I just don't know if they are.
I need to think, and reflect, on what brings me here to Byzantium--talk to the emperor, talk to the wizard, get better. To allow life to return to my body where it fled, before, and reinvigorate my belief that no matter what happens, I deserve to live, and live well. I may have lost sight of that, temporarily--this may have become buried in the typical rounds of life.
I have felt like a merry go round horse a few days here, some days I've felt like a guinea pig, and others, like a punching bag for the disdain or anxiety of doctors. While I have an overwhelming good sense of those who are caring for me, there are a couple of team members I've encountered who are not, I think, on quite the same page. Certainly, I'm spoiled by the 90% good I've encountered versus the 10% whatever--especially as I've encountered no bad. But incredible doctors make mediocre ones look terrible by comparison....medicine is too personal, even behind all those cold machines, to make up for what a person might lack in personality or empathy.
And I recognize that this journey is changing me too in many ways, that I'm not impermeable whatsoever. I have spent what seems like a year and is barely over a month straining to get to this point where there are about to try to kill whatever is left of this cancer. Perhaps that causes me apprehension--worry that they won't kill it, that this is it, that the improvements I've made are all I can expect.
I find that healing is bringing not surprises but realities that I'd ill considered. Of course when they bisect your neck, you should expect to lose some mobility up and down as you heal--but I hadn't thought of it--the tightness of the muscles, the neck aches I've had in the back of my neck....my head lately pounding.
Yet I'm well...my temperature, my blood pressure, my attitude--all where they should be....
This is no country for old men, indeed. This is just pre-prize fight, and there is doubt in me, and I have to square that away with what I know to be true. That I've come to a great place to be treated, and I've arrived in good time, to a warm welcome, that a treatment plan has my name on it. Radiation is ready, chemical infusion is ready, drugs for nausea have been purchased. I have to show up and help it all work by my belief.
I have to study the magnificence of my monuments. I have to believe.
Saturday, April 20, 2013
420, dude
If the excessive crowd of motor-mouthed simpletons with the Beavis and Butthead vocabularies and the rings of mother earth caked on their fleshy bodies don't convince you that marijuana should be legalised, then perhaps nothing will.
Certainly not thousands of them, streaming toward Golden Gate Park, gathering on Hippy Hill, waiting for the magic hour and minute when they all tilt their enormously high faces to the sun and say "whoa" or "dude" or "awesome."
What was I doing there? I've used marijuana to fight nausea and might need to do it again, and I have no bad feelings about the use of marijuana in many ways to make life better. I accept that some people abuse it, I accept that some people can't handle it, but the same has been said about alcohol a billion times more and we're fairly happy to keep vending it.
They say that stoners don't kill people by driving their cars--which may be true, but they certainly careen all over sidewalks and lay all over grass in questionably safe positions. I don't think mary jane is harmless; I simply don't think it's harm full.
Last year, Scott went running in Golden Gate Park on 4/20--and as he made a point of telling me what a spectacular gathering happens there, I really did want to see it. We were there early, and already the village was up, and the vendors were out, and the boxes of joints were carried through the crowd, and the sellers were screaming "edibles" at the top of their lungs. There were food vendors, a bit, but mostly brownie and rice krispie cakes, some advertised as high-makers, some advertised as double-dipped in hash oil. Such discernment I've never had with drug food--which would be better?
I can't say as I have no ambition to hold a joint to my trach tube, no desire to ever smoke anything again, and I can't eat. So, I'm an observer of this event, not the kind of tourist they really want to wander through. And painfully, Scott and I stuck out--we looked nothing like the kids around us, or the people our age, in vests without shirts, pins, vulgar mardi-gras looking necklackes of weed leaves in bright metallic green. There were families, too--pot daddy, pot mommy, pot kiddies--things I'd never thought existed. And to get there, we walked through little league play of soccer kids, a bare thousand feet from the thickest cloud of second hand smoke I've walked through in my life.
It's interesting to think that something that would halt civilization in its tracks where I'm from is treated with aplomb here--a shrug, a situation that is managed instead of raided. I admire that, even as part of me is a bit revolted by the overtness of it all. My generation has snuck through the drainage sewers and hidden behind locked doors and used code to achieve what these folks were doing flat out in a grove of the park--gathering in thousands to celebrate the one thing they found worthy to celebrate, and worship at the temple of their making.
One person who would never have condoned nor understood this was my sister--and today, this is the day she finally lost her battle with cancer. Having seen how she was suffering, my feelings of relief and gratitude that her suffering is over may be more understandable--not hold-overs of a contact high from my park experience.
I remember when my mother was going through chemo, I offered to make here a batch of pot brownies--she acted amused but I think she was shocked. I was rather shocked that I offered, but it was all I could think of to help her manage the nausea--and it's rather a good management, I understand. Please know that if the 5 anti-nausea medications that they've prescribed don't work for me wtih Cisplatin (and nausea is a virtually guaranteed side effect), I'll be at the local dispensary faster than you can say bake that goo.
I doubt my sister would have done the same, but I can't help wondering if--at some point--it would have helped. There's no guarantee it would--with her cancer--and mine--the appetitie is a beside the point situation--we satisfy with liquids what should be satisfied thusly. But I will gain weight, and I will get better, and I will do so however it works to do it--for Barb, and for myself, and for the fact that no more Prices need to die of cancer, on 4/20, or ever.
Certainly not thousands of them, streaming toward Golden Gate Park, gathering on Hippy Hill, waiting for the magic hour and minute when they all tilt their enormously high faces to the sun and say "whoa" or "dude" or "awesome."
What was I doing there? I've used marijuana to fight nausea and might need to do it again, and I have no bad feelings about the use of marijuana in many ways to make life better. I accept that some people abuse it, I accept that some people can't handle it, but the same has been said about alcohol a billion times more and we're fairly happy to keep vending it.
They say that stoners don't kill people by driving their cars--which may be true, but they certainly careen all over sidewalks and lay all over grass in questionably safe positions. I don't think mary jane is harmless; I simply don't think it's harm full.
Last year, Scott went running in Golden Gate Park on 4/20--and as he made a point of telling me what a spectacular gathering happens there, I really did want to see it. We were there early, and already the village was up, and the vendors were out, and the boxes of joints were carried through the crowd, and the sellers were screaming "edibles" at the top of their lungs. There were food vendors, a bit, but mostly brownie and rice krispie cakes, some advertised as high-makers, some advertised as double-dipped in hash oil. Such discernment I've never had with drug food--which would be better?
I can't say as I have no ambition to hold a joint to my trach tube, no desire to ever smoke anything again, and I can't eat. So, I'm an observer of this event, not the kind of tourist they really want to wander through. And painfully, Scott and I stuck out--we looked nothing like the kids around us, or the people our age, in vests without shirts, pins, vulgar mardi-gras looking necklackes of weed leaves in bright metallic green. There were families, too--pot daddy, pot mommy, pot kiddies--things I'd never thought existed. And to get there, we walked through little league play of soccer kids, a bare thousand feet from the thickest cloud of second hand smoke I've walked through in my life.
It's interesting to think that something that would halt civilization in its tracks where I'm from is treated with aplomb here--a shrug, a situation that is managed instead of raided. I admire that, even as part of me is a bit revolted by the overtness of it all. My generation has snuck through the drainage sewers and hidden behind locked doors and used code to achieve what these folks were doing flat out in a grove of the park--gathering in thousands to celebrate the one thing they found worthy to celebrate, and worship at the temple of their making.
One person who would never have condoned nor understood this was my sister--and today, this is the day she finally lost her battle with cancer. Having seen how she was suffering, my feelings of relief and gratitude that her suffering is over may be more understandable--not hold-overs of a contact high from my park experience.
I remember when my mother was going through chemo, I offered to make here a batch of pot brownies--she acted amused but I think she was shocked. I was rather shocked that I offered, but it was all I could think of to help her manage the nausea--and it's rather a good management, I understand. Please know that if the 5 anti-nausea medications that they've prescribed don't work for me wtih Cisplatin (and nausea is a virtually guaranteed side effect), I'll be at the local dispensary faster than you can say bake that goo.
I doubt my sister would have done the same, but I can't help wondering if--at some point--it would have helped. There's no guarantee it would--with her cancer--and mine--the appetitie is a beside the point situation--we satisfy with liquids what should be satisfied thusly. But I will gain weight, and I will get better, and I will do so however it works to do it--for Barb, and for myself, and for the fact that no more Prices need to die of cancer, on 4/20, or ever.
Thursday, April 18, 2013
Here's to April 25
Hooray, April 25. That's the first day of chemo and radiation.
I know I won't be cheering this date for long--I've been warned. But it's the date I begin to get some help fighting cancer in a way I couldn't myself, and for that, I'm going to practice gratitude.
I went today to be fitted for my radiation mask, and to have a CT Scan that will help the diametrist and Dr. Yom figure out where to direct the beams of radiation for best effect. Fitting the mask is one of those processes where, flat on your back and locked down, people tell you not to move like one thousand times. Flat is not comfortable for me, and flat on a table with no padding less so, and flat with some warm plastic mesh locked down over my face--far, far, less.
I managed to not move and get the mask done--then I had to wait a bit for the CT Scan. What I didn't realize until I made it in to be scanned was that the mask was going to be locked back down on me. Ugh. Then it's a few back and forths through the Stargate, and the click click click of the machine, and the uncomfortable and unexplained moments where you're in stasis, and the the move back or forth or finally the sweet release. This CT may only have taken 20 minutes but it felt like 2 hours. I suppose they all do--flat on my back again, an inexplicable table strut digging into what used to be my ass, my ability to breathe compromised by the fact that, frankly, I'd really just like to freak out.
Freaking out sometimes nets one results--often in a restaurant, a well-placed freak out can, a la Victor/Victoria net you something you really want--attention, a new entree, a comped dinner. In instances where precision pictures of your neck and jaw are at stake--no, not so much. The medical establishment, with whatever faults it possesses, does not reward the random freak out and less so when its need for accuracy is at stake.
Still, Norbert the Resident who works with Dr. Yom assured me: if you can make it through this, treatment is easy. It doesn't hurt a bit that Norbert is a nice guy and cute. Even in my reduced state, this small bit of eye candy is, I think, a cancer plus.
I was at the bigger cancer center of UCSF today, across the street from where I have my appointments for speech therapy and doctor visits. I was in the radiation unit, sitting in the men's waiting room (we change into gowns for various states of undress), so I was able to see a few other people who were obviously undergoing radiation and were mid-stride.
I must admit I'm jealous of people who have some form of cancer that doesn't obviously manifest externally--they talk normally, look normally, can probably chew if they're inclined. They could leave their treatment and perhaps walk into the Pho restaurant across the street that is right now haunting my imagination. It's crowded all the time and smells incredible--and I do operate on scent right now. The scent of a pho crowded with beef and lemongrass and a healthy spike of chili, with sprouts and mushrooms....sigh. Big sigh.
But there was one fellow today who reminded me that I don't have it the worst of anyone in the world--much of his face was gone, and, 8 treatments away from the end of radiation, he showed every bit of self-valuation and bonhomie that I hope I can muster 8 treatments from the end of my radiation road. It is good to remember: someone always has it worse, has a better attitude, and shows a greater spirit than you.
But that's ok--I'm not jealous of those virtues at all. I plan to learn something from them. When I smell pho, see cancer patients who look physically perfect, when I'm tired. The next time I'm flat on my back wondering if I can breathe, with a mask on, being asked to not move for my own sake.
I know I won't be cheering this date for long--I've been warned. But it's the date I begin to get some help fighting cancer in a way I couldn't myself, and for that, I'm going to practice gratitude.
I went today to be fitted for my radiation mask, and to have a CT Scan that will help the diametrist and Dr. Yom figure out where to direct the beams of radiation for best effect. Fitting the mask is one of those processes where, flat on your back and locked down, people tell you not to move like one thousand times. Flat is not comfortable for me, and flat on a table with no padding less so, and flat with some warm plastic mesh locked down over my face--far, far, less.
I managed to not move and get the mask done--then I had to wait a bit for the CT Scan. What I didn't realize until I made it in to be scanned was that the mask was going to be locked back down on me. Ugh. Then it's a few back and forths through the Stargate, and the click click click of the machine, and the uncomfortable and unexplained moments where you're in stasis, and the the move back or forth or finally the sweet release. This CT may only have taken 20 minutes but it felt like 2 hours. I suppose they all do--flat on my back again, an inexplicable table strut digging into what used to be my ass, my ability to breathe compromised by the fact that, frankly, I'd really just like to freak out.
Freaking out sometimes nets one results--often in a restaurant, a well-placed freak out can, a la Victor/Victoria net you something you really want--attention, a new entree, a comped dinner. In instances where precision pictures of your neck and jaw are at stake--no, not so much. The medical establishment, with whatever faults it possesses, does not reward the random freak out and less so when its need for accuracy is at stake.
Still, Norbert the Resident who works with Dr. Yom assured me: if you can make it through this, treatment is easy. It doesn't hurt a bit that Norbert is a nice guy and cute. Even in my reduced state, this small bit of eye candy is, I think, a cancer plus.
I was at the bigger cancer center of UCSF today, across the street from where I have my appointments for speech therapy and doctor visits. I was in the radiation unit, sitting in the men's waiting room (we change into gowns for various states of undress), so I was able to see a few other people who were obviously undergoing radiation and were mid-stride.
I must admit I'm jealous of people who have some form of cancer that doesn't obviously manifest externally--they talk normally, look normally, can probably chew if they're inclined. They could leave their treatment and perhaps walk into the Pho restaurant across the street that is right now haunting my imagination. It's crowded all the time and smells incredible--and I do operate on scent right now. The scent of a pho crowded with beef and lemongrass and a healthy spike of chili, with sprouts and mushrooms....sigh. Big sigh.
But there was one fellow today who reminded me that I don't have it the worst of anyone in the world--much of his face was gone, and, 8 treatments away from the end of radiation, he showed every bit of self-valuation and bonhomie that I hope I can muster 8 treatments from the end of my radiation road. It is good to remember: someone always has it worse, has a better attitude, and shows a greater spirit than you.
But that's ok--I'm not jealous of those virtues at all. I plan to learn something from them. When I smell pho, see cancer patients who look physically perfect, when I'm tired. The next time I'm flat on my back wondering if I can breathe, with a mask on, being asked to not move for my own sake.
Wednesday, April 17, 2013
Life is full of mysteries, and one of them is why I don't feel good today.
I woke up feeling questionable, and that advanced to feeling definitely not so great--but I can't point to the thing, the system, the reason, or even what feels wrong to me. General malaise, perhaps, the notion that something was but isn't....
I wouldn't know how to say this to a doctor. I can't go left or right, and there's no pain scale numeral. I just didn't feel like eating, I just didn't feel like leaving the house.
My first pass at sleeping tonight is not working, either...so I'm up, while Scott sleeps, wondering what my problem is. Like anyone, I enjoy definitions. Knowing where I am and what the pointing means is not at all a bad thing.
But tonight, we'll muddle through without that...a bit of cancer buzzkill, I suppose, and I should feel lucky I've had precious little of that to deal with. I have a fitting tomorrow for my radiation mask, so wish me luck that I feel up to it. I need to start, and I need to get this done, and I need to know that wellness lies just beyond it all.
Tuesday, April 16, 2013
Harshing My Mellow
Every doctor is an island. There is perhaps a lagoon of ego, and an archipelago of like-minded medical school graduates, but the idea that any two of them are the same is anti-snowflake.
I've yet to identify what it takes to be one--there's not a type that can be constructed. There are people who I believe can be easily tracked through primary and secondary education as likely candidates: played football but not well enough; cheered, but not into it enough; hot, but not willing to be hot enough; smart, but thought about money enough; ego, but not risk-averse enough; fatuous, but not quite smarmy enough.
I met yet another in my long line of new acquaintances in the field. This doctor, young, and with a questionable suit but interesting shoes, sized me up as uninteresting within seconds--but frankly, he's just an overseer on my medical plantation where I am the only drone. So, there may not be enough service here to interest him. As a surgeon, he's to oversee where my healing from my Indianapolis work is at, and that I don't go completely awry or fall too much apart, while dosed and bombarded these next two months. His job is as simple as a pinstripe, which he should never wear.
I rather enjoyed his breeziness, except that he called me "man" and I held my breath waiting for "dude." I know it was in there and had we spent another 45 seconds together, it would have sprung forth. For those who know me, "dude" will never describe me--"man" possibly could, depending upon its connotation. If one is connoting a look of belonging to the ruling class, the bruderbund of rich white men who in cabal are running the world, then no--I'm decidedly too down-at-heel, and the BB don't get tongue cancer, ever.
If one is saying "man" as the juggler in the orange pants meant it, it's still not possible. His "man" was a hippie chick who claimed to be swaying on too much acid. According to him: "man, San Francisco's motto should be an open mouth..." Such truth out of such innocence on such a sunny day...still, I'm not that man.
One to whom the exclamation "man, did you see that" could be directed would be the sort of man I am: bystander, observer, male. Today, a guy in pants that pulled up enough to display my leg would describe tha man, a test shirt that I took from Scott's closet to see if it made me look less sunken in upon myself (didn't), Saucony's that look far racier than I'll be for many moons forward. Yes, that kind of man.
Thinking of the juggler and his hippie chick does remind me that Scott and I met at Whole Foods for his lunch (and my combo of coconut water and Nutren) after he went swimming at USF, and before we went to the De Young Museum in Golden Gate Park this past Sunday. I spent an hour or so walkiing and window shopping on a beautiful Sunday on Haight Street. It was too early for dope smoke and just time for brunch scent. Fabulous.
Haight, for anyone born outside of this place, evokes nothing quite so much as the mid-Sixties, and the street is definitely living off that notoriety--picking the bones clean of the Boomers who drive Audis with Grateful Dead bears, and the tourists who bring their kids, inexplicably, to check out weed tsotchkes, posters and t-shirts, the Europeans who will just go anywhere, and the great masses of Asian tourists who will grimly document it all on some of the most incredible cameras I've ever seen.
Too, there are the young believers who are still around--free love, hairy-legged, flowing skirts and pants with inexplicable button flys and wooden toogle loop holders, that may be linen or just may be polyester made to look like linen--too hard to tell because--damn--a washing machine is obviously not in evidence. Always involving some sort of dog in their lives, and laying stretched out in the grass just across Stanyan, just inside the park, as if a zone had been declared where smelling like hell and looking like part of it is as welcome as a bar of soap and an unfettered smile.
To these, I am a "man." An establishmentairian, a systemic cog. And they are quite correct.
I'd like to tell them that the system is hooked into me far more than I'm hooked into it, but who knows where one starts and the other begins. These days, without the system, I'd have a month of two of sass in me and start to fade pretty rapidly. And I know myself well enough to know I'd never spend those months wondering if that dark ring around my ankle was dirt or a holdover from the chains the man laid on me. I'd just scrub that crap off ASAP.
Well, so the doctor met the man today...probably not the last one in his day, either. In fact, I rather liked this guy for all his semi-dismissiveness...let's hope the dude who came after me was far more gnarly to treat.
I've yet to identify what it takes to be one--there's not a type that can be constructed. There are people who I believe can be easily tracked through primary and secondary education as likely candidates: played football but not well enough; cheered, but not into it enough; hot, but not willing to be hot enough; smart, but thought about money enough; ego, but not risk-averse enough; fatuous, but not quite smarmy enough.
I met yet another in my long line of new acquaintances in the field. This doctor, young, and with a questionable suit but interesting shoes, sized me up as uninteresting within seconds--but frankly, he's just an overseer on my medical plantation where I am the only drone. So, there may not be enough service here to interest him. As a surgeon, he's to oversee where my healing from my Indianapolis work is at, and that I don't go completely awry or fall too much apart, while dosed and bombarded these next two months. His job is as simple as a pinstripe, which he should never wear.
I rather enjoyed his breeziness, except that he called me "man" and I held my breath waiting for "dude." I know it was in there and had we spent another 45 seconds together, it would have sprung forth. For those who know me, "dude" will never describe me--"man" possibly could, depending upon its connotation. If one is connoting a look of belonging to the ruling class, the bruderbund of rich white men who in cabal are running the world, then no--I'm decidedly too down-at-heel, and the BB don't get tongue cancer, ever.
If one is saying "man" as the juggler in the orange pants meant it, it's still not possible. His "man" was a hippie chick who claimed to be swaying on too much acid. According to him: "man, San Francisco's motto should be an open mouth..." Such truth out of such innocence on such a sunny day...still, I'm not that man.
One to whom the exclamation "man, did you see that" could be directed would be the sort of man I am: bystander, observer, male. Today, a guy in pants that pulled up enough to display my leg would describe tha man, a test shirt that I took from Scott's closet to see if it made me look less sunken in upon myself (didn't), Saucony's that look far racier than I'll be for many moons forward. Yes, that kind of man.
Thinking of the juggler and his hippie chick does remind me that Scott and I met at Whole Foods for his lunch (and my combo of coconut water and Nutren) after he went swimming at USF, and before we went to the De Young Museum in Golden Gate Park this past Sunday. I spent an hour or so walkiing and window shopping on a beautiful Sunday on Haight Street. It was too early for dope smoke and just time for brunch scent. Fabulous.
Haight, for anyone born outside of this place, evokes nothing quite so much as the mid-Sixties, and the street is definitely living off that notoriety--picking the bones clean of the Boomers who drive Audis with Grateful Dead bears, and the tourists who bring their kids, inexplicably, to check out weed tsotchkes, posters and t-shirts, the Europeans who will just go anywhere, and the great masses of Asian tourists who will grimly document it all on some of the most incredible cameras I've ever seen.
Too, there are the young believers who are still around--free love, hairy-legged, flowing skirts and pants with inexplicable button flys and wooden toogle loop holders, that may be linen or just may be polyester made to look like linen--too hard to tell because--damn--a washing machine is obviously not in evidence. Always involving some sort of dog in their lives, and laying stretched out in the grass just across Stanyan, just inside the park, as if a zone had been declared where smelling like hell and looking like part of it is as welcome as a bar of soap and an unfettered smile.
To these, I am a "man." An establishmentairian, a systemic cog. And they are quite correct.
I'd like to tell them that the system is hooked into me far more than I'm hooked into it, but who knows where one starts and the other begins. These days, without the system, I'd have a month of two of sass in me and start to fade pretty rapidly. And I know myself well enough to know I'd never spend those months wondering if that dark ring around my ankle was dirt or a holdover from the chains the man laid on me. I'd just scrub that crap off ASAP.
Well, so the doctor met the man today...probably not the last one in his day, either. In fact, I rather liked this guy for all his semi-dismissiveness...let's hope the dude who came after me was far more gnarly to treat.
Monday, April 15, 2013
Take Arms Against a Sea of Troubles....
According to Joey McGovern, I may very well eat a hamburger again, but my dual goal of eating peanut butter from the jar and Super Duper Burgers at will form a significant, and highly challenging goal. I guess that's the kind of guy I am--a Midwesterner who loves what he loves.
Today was my first appointment with the Speech and Swallowing therapist. UCSF is one of the few places around that has a Joey, who specializes not just in Head and Neck Cancer, but also in the dual functions of speech reclamation and swallowing therapy. Frankly I was kind of scared of her....
Why? Because I'm scared of swallowing. I'm scared of water. I'm scared of drowning. I'm scared of not processing and instead filling my lungs, pneumonia, another hospital visit--oh, god, not that. University Hospital did their job well, but well enough to convince me I want no part of hospitals.
So, I did something I rarely do--I told Joey I was scared. She said we were going to swallow some water and I said uh, no, I'm freaked out. So she backed off, and eased me through a few exercises, built up a bit of confidence and then BAM. We tried some swallowing.
Damn her. She charmed me. She got me on her side, wanting to please her, and then she got me to swallow. A tiny bit of thickened water, but she showed me it could be done. And I lived. I lived!
No one has really told me how fast one loses function--that it can be hard to walk after a week in bed, hard to swallow after a couple of months not doing so--that any muscle we dont' keep stretching, those of the mouth, the jaw, simply and quickly get used to not stretching, and they stop.
Now, I have to wake some parts of me back up. My adam's apple, my throat, my mouth which doesn't stretch well. It's time to go back to work, open like other people's mouths do, as if I were attacking a Dagwood sandwich, far in my future, but thinkable nonetheless.
I was given a lot to think about today. Today was patient education today at my oncologists' office. I spent an hour with the nurse practitioner who went over some of the side effects of cisplatin (that's my chemo treatment), and especially learned about the nausea, and anti-nausea suite of drugs they'll have me take. Upside: not especially related to hair loss; Downside; definitely related to sick stomach. Tricky at the best of times, trickier still with a trach tube...
Cisplatin will be given to me 3 times over a nine week period--but every week, my blood will be tested, my ick will be assessed, my pain queried. Cisplatin makes one's tissues more susceptible to radiation, and because I'm getting a fairly high dose of radiation, there's serious expectation of mouth sores, burns on my skin, burns on the inside, a burning throat, fed by a mouth full of sores. Possible.
I'm sobered. Not scared, not like swallowing water...but I'm very sobered. I cannot stop radiation , and chemo is a given--and I'm ok with that fact. I want to get better. I want Dr. Kramer to get me infused and Dr. Yom to give me some treadmarks of treatment. I want Joey to freak me out with some freaky looking applesauce and give me hell when I don't pull my jaws apart enough times per day.
It's ok guys. I'm scared shitless but I like you.
Today was my first appointment with the Speech and Swallowing therapist. UCSF is one of the few places around that has a Joey, who specializes not just in Head and Neck Cancer, but also in the dual functions of speech reclamation and swallowing therapy. Frankly I was kind of scared of her....
Why? Because I'm scared of swallowing. I'm scared of water. I'm scared of drowning. I'm scared of not processing and instead filling my lungs, pneumonia, another hospital visit--oh, god, not that. University Hospital did their job well, but well enough to convince me I want no part of hospitals.
So, I did something I rarely do--I told Joey I was scared. She said we were going to swallow some water and I said uh, no, I'm freaked out. So she backed off, and eased me through a few exercises, built up a bit of confidence and then BAM. We tried some swallowing.
Damn her. She charmed me. She got me on her side, wanting to please her, and then she got me to swallow. A tiny bit of thickened water, but she showed me it could be done. And I lived. I lived!
No one has really told me how fast one loses function--that it can be hard to walk after a week in bed, hard to swallow after a couple of months not doing so--that any muscle we dont' keep stretching, those of the mouth, the jaw, simply and quickly get used to not stretching, and they stop.
Now, I have to wake some parts of me back up. My adam's apple, my throat, my mouth which doesn't stretch well. It's time to go back to work, open like other people's mouths do, as if I were attacking a Dagwood sandwich, far in my future, but thinkable nonetheless.
I was given a lot to think about today. Today was patient education today at my oncologists' office. I spent an hour with the nurse practitioner who went over some of the side effects of cisplatin (that's my chemo treatment), and especially learned about the nausea, and anti-nausea suite of drugs they'll have me take. Upside: not especially related to hair loss; Downside; definitely related to sick stomach. Tricky at the best of times, trickier still with a trach tube...
Cisplatin will be given to me 3 times over a nine week period--but every week, my blood will be tested, my ick will be assessed, my pain queried. Cisplatin makes one's tissues more susceptible to radiation, and because I'm getting a fairly high dose of radiation, there's serious expectation of mouth sores, burns on my skin, burns on the inside, a burning throat, fed by a mouth full of sores. Possible.
I'm sobered. Not scared, not like swallowing water...but I'm very sobered. I cannot stop radiation , and chemo is a given--and I'm ok with that fact. I want to get better. I want Dr. Kramer to get me infused and Dr. Yom to give me some treadmarks of treatment. I want Joey to freak me out with some freaky looking applesauce and give me hell when I don't pull my jaws apart enough times per day.
It's ok guys. I'm scared shitless but I like you.
Saturday, April 13, 2013
The Fighting Man
As we've seen before, protection is good. That's the positive force that would have told the 5 year old on Muni yesterday that staring is seriously uncool. Protection would have spared me wondering how bad I look to get that diligent a look.
I remember my mother telling me not to stare, and wondering how it was that I was going to be able to stop--the utter awestruckedness that I've felt in the face of someone truly unique! Well, I don't feel it so much anymore, but I did. And that's what kept me from bitch smacking a five year old on Muni yesterday--that other great force, empathy.
Yes, darling, I am odd. No one is San Francisco looks quite like me, but there are some who may have it worse. I was talking to Norbert, the radiation oncologist resident, and he brought up people they see who have had surgeries like mine but who--for various reasons--have had no reconstruction. Hard to imagine--that's no reconstruction with jaw replacement--leaving a whole side of the body exposed....mine has a bolt of skin pulled up to it and stuffed into place, left to atrophy and settle back into a nearly normal jaw--4 months for it to do so, said the surgeon. Given that surgeons and car dealers have equal problems with time, I'm betting 6.
Despite the overly avid jawline I have, and the fact that my mouth is in a weird position at the moment--and opens a la an enormous halibut--and despite the fact that it's hard for me to look left/right and too far up--muscle and skin tightness, I guess--I do like to feel as normal as I can. Hence my Whole Foods excursions, and my desire to put big boy pants on and go to my docto's appointments with no notes pinned to my clothes.
This occasionally creates clashes with Scott, whose greatest desire is to see that no five year old offend me, and that no wave knock me off my feet. Today, we began a big fight as we left the house. Do you have your sunglasses, do you want to have them? What about a Nutren, should you take one--and if so, do you have a tube to feed it into? why are you taking your backpack, do you really need your backpack--yes, if I'm going to carry, nutren, a feeding tube, the container for my sunglasses, all the tissue I need to spit, blow or cough into (how much? A lot), my Ipad in case I want to talk, the keyboard that makes talking faster....everytime I leave the house there is this list starting me in the face. Will I get home in time or should antibiotics go with me? if I'm there and hungry, is there a way to eat? If no one is around, can I shove some coffee down the tube without major incident? What if my leg hurts, what then? And then there's the logistical stuff.
Nothing about Scott really makes me want to lose my temper with him--he goes out of his way, he truly fixes things I didn't know were broken, he would take the brunt of the bus rather than see me hurt. These are truly wonderful things.
I would appreciate some of his smaller supervisions more, too, had I not lost so much control in my life, and if I didn't need a bit of reminder that I'm still very much a man, and one of agency, in my own life.
There's all my bottom teeth that went with my jaw--right now, the entire area is covered with a flap of skin and muscle that was transplanted there from my left pec to fill the void--but for a couple of weeks, I suspected my teeth were really down there, under the flap--I could feel them! I have heard them creak a bit and felt them rub against one another--all illusions, of course, phantom stirrings from what used to be. A large part of me gone.
My face which looks to be storing walnuts with Chip and Dale--a bit more manhood down the drain, but a bit more cartoon gopher in its place. This doesn't always seem to be a fair trade.
I've mentioned this before but please imagine if your left nipple was suddently sitting in the middle of your chest. My tanning days--this summer at least--seriously over. I can explain a lot, but a distended nipple in the middle of my body? not so much.
The right leg--ah, she is a problem. Hard to stand on for long, occasionally stiff, a bit infected at the moment on the skin, a bit sore, slower than I've ever been. No bonus to that fact that I can't kick well--how am I going to fight a mugger now?
Being a man has always been the perfect thing to me--and the fact that I could be one, occupy a perfect body and order the space around me with aplomb--was a delight. I suspect my parents--knowledgeable and likely unhappy in their early diagnosis of my fairly-obvious homo nature--emphasized as I grew up the most conservative, most regressive and most early Sixties way of defining what a man is, and what a man does, at least one that belonged to a Silent Majority household.
No crying, no feeling sorry for oneself, athletic, popular, effortless, mannerly, but ready to fight for honor at the drop of a hanky...and I still struggle against this collection of monoliths in my dictionary, and I'm still unable to move them away. Some people have Stonehenge--this is Markhenge.
A man, whatever else he may need (and a Scott is an acceptable need, by the way, I have developed that much), is in no need of someone to tell him he needs to carry a Nutren, and if a Nutren, then a tube, and if a tube, then a napkin, and if not a napkin, a few more tissue and once the tissue, then the sunglasses, and if the sunglasses then the cleaner, and once the cleaner is packed then the Ipad because no one can understand shit that I'm mumbling through this neo-mouth, this gopher hole, this accident of surgery.
Impatient as I am for my cis-gendered, man self to return, I'm occasionally impatient with Scott--and today, I was sure I would snap his head off mid-instruction, mid-ready to leave the apartment.
Impatient for the idea that I can be trusted to get somewhere and get home with no mishaps. No lapses in intelligence for which the only possible explanation could be cancer--it has obviously stupided me to such a degree....
Ok, yes, that was sarcastic--but you have to know that what I want, the balm, the manna--is normalcy. My face--my dimples where they were. My teeth, the ability to swallow, to say things with no computer interface.
That's what I'm fighting for--a bit round the pecs, some weight to pump up the ass, a jaw line, no Chip, no Dale. Striding as I used to in NYC because I always have a place to go,..an appetitie for sex and hamburgers, two of my favorite things. Junk food at 1am on Saturday because I don't know why I'm up. Someone to remind me I'm their favorite man, at least 10 times, before we leave the house.
I remember my mother telling me not to stare, and wondering how it was that I was going to be able to stop--the utter awestruckedness that I've felt in the face of someone truly unique! Well, I don't feel it so much anymore, but I did. And that's what kept me from bitch smacking a five year old on Muni yesterday--that other great force, empathy.
Yes, darling, I am odd. No one is San Francisco looks quite like me, but there are some who may have it worse. I was talking to Norbert, the radiation oncologist resident, and he brought up people they see who have had surgeries like mine but who--for various reasons--have had no reconstruction. Hard to imagine--that's no reconstruction with jaw replacement--leaving a whole side of the body exposed....mine has a bolt of skin pulled up to it and stuffed into place, left to atrophy and settle back into a nearly normal jaw--4 months for it to do so, said the surgeon. Given that surgeons and car dealers have equal problems with time, I'm betting 6.
Despite the overly avid jawline I have, and the fact that my mouth is in a weird position at the moment--and opens a la an enormous halibut--and despite the fact that it's hard for me to look left/right and too far up--muscle and skin tightness, I guess--I do like to feel as normal as I can. Hence my Whole Foods excursions, and my desire to put big boy pants on and go to my docto's appointments with no notes pinned to my clothes.
This occasionally creates clashes with Scott, whose greatest desire is to see that no five year old offend me, and that no wave knock me off my feet. Today, we began a big fight as we left the house. Do you have your sunglasses, do you want to have them? What about a Nutren, should you take one--and if so, do you have a tube to feed it into? why are you taking your backpack, do you really need your backpack--yes, if I'm going to carry, nutren, a feeding tube, the container for my sunglasses, all the tissue I need to spit, blow or cough into (how much? A lot), my Ipad in case I want to talk, the keyboard that makes talking faster....everytime I leave the house there is this list starting me in the face. Will I get home in time or should antibiotics go with me? if I'm there and hungry, is there a way to eat? If no one is around, can I shove some coffee down the tube without major incident? What if my leg hurts, what then? And then there's the logistical stuff.
Nothing about Scott really makes me want to lose my temper with him--he goes out of his way, he truly fixes things I didn't know were broken, he would take the brunt of the bus rather than see me hurt. These are truly wonderful things.
I would appreciate some of his smaller supervisions more, too, had I not lost so much control in my life, and if I didn't need a bit of reminder that I'm still very much a man, and one of agency, in my own life.
There's all my bottom teeth that went with my jaw--right now, the entire area is covered with a flap of skin and muscle that was transplanted there from my left pec to fill the void--but for a couple of weeks, I suspected my teeth were really down there, under the flap--I could feel them! I have heard them creak a bit and felt them rub against one another--all illusions, of course, phantom stirrings from what used to be. A large part of me gone.
My face which looks to be storing walnuts with Chip and Dale--a bit more manhood down the drain, but a bit more cartoon gopher in its place. This doesn't always seem to be a fair trade.
I've mentioned this before but please imagine if your left nipple was suddently sitting in the middle of your chest. My tanning days--this summer at least--seriously over. I can explain a lot, but a distended nipple in the middle of my body? not so much.
The right leg--ah, she is a problem. Hard to stand on for long, occasionally stiff, a bit infected at the moment on the skin, a bit sore, slower than I've ever been. No bonus to that fact that I can't kick well--how am I going to fight a mugger now?
Being a man has always been the perfect thing to me--and the fact that I could be one, occupy a perfect body and order the space around me with aplomb--was a delight. I suspect my parents--knowledgeable and likely unhappy in their early diagnosis of my fairly-obvious homo nature--emphasized as I grew up the most conservative, most regressive and most early Sixties way of defining what a man is, and what a man does, at least one that belonged to a Silent Majority household.
No crying, no feeling sorry for oneself, athletic, popular, effortless, mannerly, but ready to fight for honor at the drop of a hanky...and I still struggle against this collection of monoliths in my dictionary, and I'm still unable to move them away. Some people have Stonehenge--this is Markhenge.
A man, whatever else he may need (and a Scott is an acceptable need, by the way, I have developed that much), is in no need of someone to tell him he needs to carry a Nutren, and if a Nutren, then a tube, and if a tube, then a napkin, and if not a napkin, a few more tissue and once the tissue, then the sunglasses, and if the sunglasses then the cleaner, and once the cleaner is packed then the Ipad because no one can understand shit that I'm mumbling through this neo-mouth, this gopher hole, this accident of surgery.
Impatient as I am for my cis-gendered, man self to return, I'm occasionally impatient with Scott--and today, I was sure I would snap his head off mid-instruction, mid-ready to leave the apartment.
Impatient for the idea that I can be trusted to get somewhere and get home with no mishaps. No lapses in intelligence for which the only possible explanation could be cancer--it has obviously stupided me to such a degree....
Ok, yes, that was sarcastic--but you have to know that what I want, the balm, the manna--is normalcy. My face--my dimples where they were. My teeth, the ability to swallow, to say things with no computer interface.
That's what I'm fighting for--a bit round the pecs, some weight to pump up the ass, a jaw line, no Chip, no Dale. Striding as I used to in NYC because I always have a place to go,..an appetitie for sex and hamburgers, two of my favorite things. Junk food at 1am on Saturday because I don't know why I'm up. Someone to remind me I'm their favorite man, at least 10 times, before we leave the house.
Friday, April 12, 2013
For your pleasure...
Just a quick note to say that's it's lovely here, the wind is whipping around the apartment, the windows are open, the bathroom door keeps slamming shut. The sun is bright and the colors are vibrant everywhere.
Tonight, Scott and I have a guest, our friend George, and in honor of his birthday we're having herbed chicken, cornbread stuffing, curried cranberries and roasted brussel sprouts with bacon. And,yes, i'm cooking! The only problem is that i can't mouth taste what the food is like as it cooks, but the smell tells me all is well. I did cheat on George's dessert--double chocolate cake from Whole Foods.
i hope your Friday evening is great--I get to watch George and Scott eat, which strangely, I enjoy. I'll have some nutren and if I'm good, a piece of cake blended to a fare-thee-well with some milk in the blender. May your dinner be just as good.
Tonight, Scott and I have a guest, our friend George, and in honor of his birthday we're having herbed chicken, cornbread stuffing, curried cranberries and roasted brussel sprouts with bacon. And,yes, i'm cooking! The only problem is that i can't mouth taste what the food is like as it cooks, but the smell tells me all is well. I did cheat on George's dessert--double chocolate cake from Whole Foods.
i hope your Friday evening is great--I get to watch George and Scott eat, which strangely, I enjoy. I'll have some nutren and if I'm good, a piece of cake blended to a fare-thee-well with some milk in the blender. May your dinner be just as good.
Thursday, April 11, 2013
Are you what you say you are?
A month or so back, there was an eruption in the "does this matter" universe between Perez Hilton and the rapper/singer Azaelia Banks--and I happen to be thinking of that because I'm sitting here surrounded by a beautiful Northern California afternoon listening to Miss Banks' "Liquorice" (content warning: if you don't know, it's a bit adult).
Apparently Azaelia Banks is one of a growing number of younger people who don't feel constrained, as some of us do, in using certain words, and advocates that the use of them defeats their negative connotations--so she called Perez Hilton a "faggot".
I have to admit that I thought it would be the end of our love affair. I deeply hate that word, I've deeply suffered it and it's been used against me when I'm alone, vulnerable, and it's always meant as a threat, a put down, it stands for hatred. There's nothing good about it.
But I accept that Azaelia may have a point too--and she's quite free as other rappers often are, with the old words for African Americans, and perhaps she's out K-talking in Crown Heights, too--but I don't know. Perhaps walled off words do simply stew in their enclosures, but were that the case, then why use that word as an insult in a Twitter fight? That seems to just justify it's use as an insult.
I've thought a lot about whether people and institutions are who they say they are--if my experience with them reflects with they say about themselves. There are stars in this regard--every time I go to Whole Foods, the fact that I can't speak well isn't an issue to anyone--meat counter, check out, in the aisles. I'm treated like everyone else, which is good, and I've got to give some props to them for that--they don't even blink or act as if I'm at all surprising to them.
I love going to Starbucks in the Castro, because I go with Scott and they know him. Obviously. He's bought enough mocha to put some of them through college--still I wonder--would they be this good to me if he weren't with me? Probably. This is a pretty out and out friendly little shop. They know the disability bears who come through to laze in the 18th Street sun, they know the coolios with their dangling rings in various body parts, they know the middle-aged work out queens no matter in what state of deshabille they happen to be in.
Mollie Stone's on 18th is another grocery were one encounters normalcy--the wonderful feeling that for 5 minutes you're not a circus freak. The tube in your throat is no more an invitation to disdain than the fact that you sound as if mashed potatoes were being mashed in your mouth at the very moment you try to speak. Theoretically, smaller or more expensive grocery stores in San Francisco score well on my customer service matrix--I'll try more of them, and see.
In general, San Francisco is a good place to be disabled. And I know that sounds strange, but I've yet to see a senior citizen not offered a seat on Muni, though it gets dicey when rush hits and its standing room for everyone. I've been offered seats, which frankly doesn't always please me, or rather it does, but I'd rather not attract the notice...yet a couple of times, I've been damn glad of them.
I tell people I'm healthy and feel good--and that's true in a way--but I tire easily. I suppose after losing 35 pounds, having major surgery and traveling 3/4 of the country for phase 2 treatment, I can justifiy that fatigue.But it doesn't seem like it should be me, kind of like faggot. I don't want to claim faggot or fatigue.
There have been plenty of situations where it was obvious that I couldn't expect any help or any empathy from salespeople or medical receptionists, where my need to type some information was seen as some sort of time-eating horror. Those nails won't file themselves, huh? Gotta get back to it.
Those people rarely stand for what their company or doctor believes--they are the typical seat warmers we are all familiar with, having met them within each strata and every company where we've worked. There's nothing like 5, a pitcher of margaritas, payday, the weekend to them--and I like all of those things, but I'm as a worker, I engage Tuesday on its own merits instead of bemoaning that it's not 4:20.
I'm actually very excited for Azaelia Banks to put out her album--so far I've just purchased an EP, and got Scott to buy it--even more unusual as neither of us have rap collections of any size, but she has talent. I love the 8 foot weave she wears in a couple of her videos--that sort of over-the-topness captures my attention. I do wonder if she's who she says she is--I suspect she'd be patient while I type out my request for an autograph--but I could be mistaken. She may be exactly who she claims to be, and a tongueless faggot may be the last thing she needs eating the seconds of precious in her life.
Until proven otherwise, I'll believe her innocent.
Apparently Azaelia Banks is one of a growing number of younger people who don't feel constrained, as some of us do, in using certain words, and advocates that the use of them defeats their negative connotations--so she called Perez Hilton a "faggot".
I have to admit that I thought it would be the end of our love affair. I deeply hate that word, I've deeply suffered it and it's been used against me when I'm alone, vulnerable, and it's always meant as a threat, a put down, it stands for hatred. There's nothing good about it.
But I accept that Azaelia may have a point too--and she's quite free as other rappers often are, with the old words for African Americans, and perhaps she's out K-talking in Crown Heights, too--but I don't know. Perhaps walled off words do simply stew in their enclosures, but were that the case, then why use that word as an insult in a Twitter fight? That seems to just justify it's use as an insult.
I've thought a lot about whether people and institutions are who they say they are--if my experience with them reflects with they say about themselves. There are stars in this regard--every time I go to Whole Foods, the fact that I can't speak well isn't an issue to anyone--meat counter, check out, in the aisles. I'm treated like everyone else, which is good, and I've got to give some props to them for that--they don't even blink or act as if I'm at all surprising to them.
I love going to Starbucks in the Castro, because I go with Scott and they know him. Obviously. He's bought enough mocha to put some of them through college--still I wonder--would they be this good to me if he weren't with me? Probably. This is a pretty out and out friendly little shop. They know the disability bears who come through to laze in the 18th Street sun, they know the coolios with their dangling rings in various body parts, they know the middle-aged work out queens no matter in what state of deshabille they happen to be in.
Mollie Stone's on 18th is another grocery were one encounters normalcy--the wonderful feeling that for 5 minutes you're not a circus freak. The tube in your throat is no more an invitation to disdain than the fact that you sound as if mashed potatoes were being mashed in your mouth at the very moment you try to speak. Theoretically, smaller or more expensive grocery stores in San Francisco score well on my customer service matrix--I'll try more of them, and see.
In general, San Francisco is a good place to be disabled. And I know that sounds strange, but I've yet to see a senior citizen not offered a seat on Muni, though it gets dicey when rush hits and its standing room for everyone. I've been offered seats, which frankly doesn't always please me, or rather it does, but I'd rather not attract the notice...yet a couple of times, I've been damn glad of them.
I tell people I'm healthy and feel good--and that's true in a way--but I tire easily. I suppose after losing 35 pounds, having major surgery and traveling 3/4 of the country for phase 2 treatment, I can justifiy that fatigue.But it doesn't seem like it should be me, kind of like faggot. I don't want to claim faggot or fatigue.
There have been plenty of situations where it was obvious that I couldn't expect any help or any empathy from salespeople or medical receptionists, where my need to type some information was seen as some sort of time-eating horror. Those nails won't file themselves, huh? Gotta get back to it.
Those people rarely stand for what their company or doctor believes--they are the typical seat warmers we are all familiar with, having met them within each strata and every company where we've worked. There's nothing like 5, a pitcher of margaritas, payday, the weekend to them--and I like all of those things, but I'm as a worker, I engage Tuesday on its own merits instead of bemoaning that it's not 4:20.
I'm actually very excited for Azaelia Banks to put out her album--so far I've just purchased an EP, and got Scott to buy it--even more unusual as neither of us have rap collections of any size, but she has talent. I love the 8 foot weave she wears in a couple of her videos--that sort of over-the-topness captures my attention. I do wonder if she's who she says she is--I suspect she'd be patient while I type out my request for an autograph--but I could be mistaken. She may be exactly who she claims to be, and a tongueless faggot may be the last thing she needs eating the seconds of precious in her life.
Until proven otherwise, I'll believe her innocent.
Wednesday, April 10, 2013
The Mashed Potato and the Cheesecake
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!
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!
Tuesday, April 9, 2013
Is that the right leg?
If you're like me, you may have wondered how it's possible that someone could lose a liver who was in the hospital for influenza, or how if their left leg was gangrenous, then somehow their right leg was excised. If so, then like me, we've been wondering the wrong thing--the real question is how do they ever get it right?
Witness: Today at 6:15am, foodless, waterless, coffeeless, I left the apartment to go the California Pacific University's Hospital for a 7am patient call. This because yesterday I mentioned to Dr. Kramer that my feeding tube was driving me nuts-=-that it was too small for anything but liquids, that I couldn't blend food and eat it, and that there was no way I could gain any weight just gravity feeding six vanilla Nutrens a day...he got that. Thus he said, "we'll send you over to Interventiional Radiology to have them check this tube out" and his staff scheduled me in.
I got to the hospital at 6:50am and proceeded up to the 6th floor rendezvous where I was directed to ambulatory patient intake--and here was my first indication that something was wrong. They said--who is here with you to take you home? I said, I'm taking the bus home, no one is here. They looked at me as if I were speaking jive to Barbara Billingsley but let it go at that.
They put me in a small holding room and told gave me a gown and footies and told me to strip to my skivvies. I thought this is curious--just to check a tube? But I played along. Some people like me naked. I can't imagine it, as I certainly don't enjoy it right now, but hey--if you need a crotch shot to check out my feeding tube, be my guest. It's not like I'm hiding anything down there.
When the nurse came in to start an IV and take my history, a nice young lady named Ann, I said (as best I can say anything)--"Ann, what the hell do you think is happening today? I think I'm getting my tube checked." I think she got 20% of that, but the 20% that indicated that what was happening was unintelligible to me, and went and checked with the charge nurse. She came back a few minutes later, relieved, and said, "They want you to have an IV just in case..." In case of what I wondered? The heebs? the willies? fear of new tubing? But again, I thought I'd wait and see. Hospitals are weird about how they do things. Virtually everything that seems as if it should happen in an instant, happens over an hour, takes costume changes and orderlies, requires blood pressure taken and heart rate monitors, oxygen saturation measured. Then Ann began to take an exhaustive history of the wonders of my medical care.
Most charming about her: she could not get over that my right leg provided the bone for my new jaw. Although it is not charming to me, it was a exclamatory event to her, so I got excited too. Yes, my jaw is a leg bone! I have hinges! It took 18 hours! It was supercool!
Finally, they placed me in warmer blankets and swaddled me on a gurney and took me away. I ended up in a surgical suite, and Aneal introduced himself as one of the nurses on my team. What team, I asked? Seriously, what team could possibly need to look at this tube of mine and evaluate it for improvement? He said: "I understand you don't want to be sedated but there are standards that we must follow for surgery..." and I sat up straighter and said--as best I can--SURGERY? NO ONE SAID ANYTHING TO ME ABOUT SURGERY. He got about 5% of that because by this point, my mouth is far wetter (it's hard to process spit and the like), and I am starting to stress out, and things get mushy when that happens.
He came back with a pen, clipboard and paper--I wrote to him: Dr. Kramer simply wanted the tube I have evaluated for efficacy--there's no plan I'm aware of to perform surgery on me! He said, "Oh, perhaps I should have you speak to the doctor" and he went to page Dr. Reed.
A nice man, Dr. Reed was just back from NYC, and I heard, before I saw him "great time" and "Radio City Music Hall", which made me like him more. As he introduced himself he said--what seems to be the trouble? I said, again, why am I in surgery? I just need to have this tube evaluated for possible improvement, and he said--let's look at this tube you have.
He saw it, furrowed his brow, and pointed to ther skinniest part, the top part, the part I most hate and that prevents me from eating anything that isn't utterly lump free, said: "Why do you have this?' I said: "I have no idea, they gave it to me at the hospital and told me to keep it."
One of the nurses with Dr. Reed then pointed to the wider, lower tube, and said--"Do you like this part of the tube?" I said absolutely, I have no problems with this part--I might even be able to eat some thin mashed potatoes with this part--and with the permission of the doctor, she wanked off the top part of the tube, and, brandishing scissors that looked like kindergarten and paste scissors, cut about half the length of the lower tube away.
Then, she planted a new feeder unit on top, showed me how to detach it if I wanted or need a wider feed area and said--that's all we need to do.
I was in a room with a space age patient platform. Behind a window, there was a control room with 5 people looking at me, a huge flat screen monitor flashed numbers and calculations behind the patient platform. Everything was clean, superclean, and modern; the people were friendly and accomodating, but damned if they didn't--right up to the last minute--think they were going to drill a new tube into me, put me under, and call Scott to come pick me up.
This was, scissor wise, perhaps the lowest tech and fastest surgery done at Cal Pacific this week.
When they wheeled me back to recovery, Ann said--you're done! I said, girl, we never got started. As she took my IV starter out she said--where did you have your surgery done? and when I told her Indianapolis, she said: "Oh, I came here from South Bend."
I walked to the bus, laughing most of the way, trying to figure out on text message how to tell Scott that I may have been inches from open heart surgery and had I not insisted, may have been already in sweet nothing land, being semi-poked open and new, unnecessary tubing inserted. At this point, all I wanted was coffee, anyway, and all I ever want in a hospital these days is to leave it.
No one and nothing is perfect--communication is rife with error, and perception is a vulgarity to reality--whatever reality turns out to be. The fact that I left with the two legs I entered with, and half the tube I used to have was, to me, victory.And should I fail to mention the moral of the story let me just say--ask, and ask again, what they are doing to you, and just what they plan to do.
Witness: Today at 6:15am, foodless, waterless, coffeeless, I left the apartment to go the California Pacific University's Hospital for a 7am patient call. This because yesterday I mentioned to Dr. Kramer that my feeding tube was driving me nuts-=-that it was too small for anything but liquids, that I couldn't blend food and eat it, and that there was no way I could gain any weight just gravity feeding six vanilla Nutrens a day...he got that. Thus he said, "we'll send you over to Interventiional Radiology to have them check this tube out" and his staff scheduled me in.
I got to the hospital at 6:50am and proceeded up to the 6th floor rendezvous where I was directed to ambulatory patient intake--and here was my first indication that something was wrong. They said--who is here with you to take you home? I said, I'm taking the bus home, no one is here. They looked at me as if I were speaking jive to Barbara Billingsley but let it go at that.
They put me in a small holding room and told gave me a gown and footies and told me to strip to my skivvies. I thought this is curious--just to check a tube? But I played along. Some people like me naked. I can't imagine it, as I certainly don't enjoy it right now, but hey--if you need a crotch shot to check out my feeding tube, be my guest. It's not like I'm hiding anything down there.
When the nurse came in to start an IV and take my history, a nice young lady named Ann, I said (as best I can say anything)--"Ann, what the hell do you think is happening today? I think I'm getting my tube checked." I think she got 20% of that, but the 20% that indicated that what was happening was unintelligible to me, and went and checked with the charge nurse. She came back a few minutes later, relieved, and said, "They want you to have an IV just in case..." In case of what I wondered? The heebs? the willies? fear of new tubing? But again, I thought I'd wait and see. Hospitals are weird about how they do things. Virtually everything that seems as if it should happen in an instant, happens over an hour, takes costume changes and orderlies, requires blood pressure taken and heart rate monitors, oxygen saturation measured. Then Ann began to take an exhaustive history of the wonders of my medical care.
Most charming about her: she could not get over that my right leg provided the bone for my new jaw. Although it is not charming to me, it was a exclamatory event to her, so I got excited too. Yes, my jaw is a leg bone! I have hinges! It took 18 hours! It was supercool!
Finally, they placed me in warmer blankets and swaddled me on a gurney and took me away. I ended up in a surgical suite, and Aneal introduced himself as one of the nurses on my team. What team, I asked? Seriously, what team could possibly need to look at this tube of mine and evaluate it for improvement? He said: "I understand you don't want to be sedated but there are standards that we must follow for surgery..." and I sat up straighter and said--as best I can--SURGERY? NO ONE SAID ANYTHING TO ME ABOUT SURGERY. He got about 5% of that because by this point, my mouth is far wetter (it's hard to process spit and the like), and I am starting to stress out, and things get mushy when that happens.
He came back with a pen, clipboard and paper--I wrote to him: Dr. Kramer simply wanted the tube I have evaluated for efficacy--there's no plan I'm aware of to perform surgery on me! He said, "Oh, perhaps I should have you speak to the doctor" and he went to page Dr. Reed.
A nice man, Dr. Reed was just back from NYC, and I heard, before I saw him "great time" and "Radio City Music Hall", which made me like him more. As he introduced himself he said--what seems to be the trouble? I said, again, why am I in surgery? I just need to have this tube evaluated for possible improvement, and he said--let's look at this tube you have.
He saw it, furrowed his brow, and pointed to ther skinniest part, the top part, the part I most hate and that prevents me from eating anything that isn't utterly lump free, said: "Why do you have this?' I said: "I have no idea, they gave it to me at the hospital and told me to keep it."
One of the nurses with Dr. Reed then pointed to the wider, lower tube, and said--"Do you like this part of the tube?" I said absolutely, I have no problems with this part--I might even be able to eat some thin mashed potatoes with this part--and with the permission of the doctor, she wanked off the top part of the tube, and, brandishing scissors that looked like kindergarten and paste scissors, cut about half the length of the lower tube away.
Then, she planted a new feeder unit on top, showed me how to detach it if I wanted or need a wider feed area and said--that's all we need to do.
I was in a room with a space age patient platform. Behind a window, there was a control room with 5 people looking at me, a huge flat screen monitor flashed numbers and calculations behind the patient platform. Everything was clean, superclean, and modern; the people were friendly and accomodating, but damned if they didn't--right up to the last minute--think they were going to drill a new tube into me, put me under, and call Scott to come pick me up.
This was, scissor wise, perhaps the lowest tech and fastest surgery done at Cal Pacific this week.
When they wheeled me back to recovery, Ann said--you're done! I said, girl, we never got started. As she took my IV starter out she said--where did you have your surgery done? and when I told her Indianapolis, she said: "Oh, I came here from South Bend."
I walked to the bus, laughing most of the way, trying to figure out on text message how to tell Scott that I may have been inches from open heart surgery and had I not insisted, may have been already in sweet nothing land, being semi-poked open and new, unnecessary tubing inserted. At this point, all I wanted was coffee, anyway, and all I ever want in a hospital these days is to leave it.
No one and nothing is perfect--communication is rife with error, and perception is a vulgarity to reality--whatever reality turns out to be. The fact that I left with the two legs I entered with, and half the tube I used to have was, to me, victory.And should I fail to mention the moral of the story let me just say--ask, and ask again, what they are doing to you, and just what they plan to do.
Monday, April 8, 2013
Hayes Valley in the shade
San Francisco has micro climates which themselves are further split into micro climates. When Scott and I leave the apartment in Upper Market/Twin Peaks, we tend to feel the breeze and the chill and then slowly descend down 18th Street where--if the sun is out--it typically picks up 10-15 degrees. By the time we reach Castro at the bottom of the hill, the jackets are unzipped or, often, altogether off. All within 3/4 of a mile.
Our first appointment on the road to total cancer recovery took us to Pacific Heights, to see the oncologist, Dr. Kramer. His office is in a professional cube on a hillside bathed in sunlight, mocking the swiss sweater that I had on, making me regret that I was ever born with body temperature. Right now, by contrast, 45 minutes after said sun bath, I'm sitting on a bench in the shade on Hayes Street, Hayes Valley, freezing my ass off, glad of my sartorial choices. This is a lesson in SF living to the uninitiated. Never assume that the temperature that greets you will later meet you.
It would not be possible, here, to give you the entire flavor of my meeting with Dr. Kramer. Suffice it to say that he charmed me and gained every bit of my confidence he will need by his laconic and sardonic ways, which suit me, and soothe all anxiousness in my soul. While taking my family history I suggested that my father's biggest medical problem was that he was a jerk--to which the good doctor shot back in record time, "and I understand that problem is genetic...". This is exactly the person I want bathing me in toxicity.
It looks like, should my blood and hearing tests confirm my eligibility, that chemo will be a once every three weeks situation over a nine week treatment, 6 hours at a stretch. Something called CIS, or SIS (that's what it sounds like) platinum, which lingers in the system and apparently bitch slaps at 2 weeks after application. Good news? minimal hair loss. Bad news? Throat problems, a bit of nausea to fight, strong as Atlas' farts, apparently.
What also sells Dr. Kramer--and this is a lesson all doctor's would do well to emulate--is his staff. They are friendly and confident to a fault--and what I need right now, besides friendly, is confident. It's surprisingly difficult to know, coming from Indiana, if providers in California are actually considered "in-network"--no one would flat out answer that question, at least not from Anthem--and when a doctor's office does, one does well to be a bit spurious of their knowledge. But this office runs like a frigging top. Hallelujah! One down, and not bad, in fact quite good.
Tomorrow, I go to have a check of the tube I use to eat, hoping that they can alleviate some of the constrictions that I deal with using this tiny feed system. I'd like them to give me the feeding equivalent of a laundry chute, something I could stick a rotisserie chicken in, but I am still well within sanity and reality--but something that could bear at least some tiny chunks in a blend would allow me to vastly extend my range of edibles. My weight would love that, thank you very much.
The hearing test, by the way, is to establish whether this platinum stuff may compromise my hearing, which is a side effect of it. Seriously. Hearing loss. Who would have thought of that? If you see me with transistor hearing aids growing out of my ears you'll know what happened.
Also tomorrow, the radiation oncologist--and let's hope her sense of humor is as wonderfully engaging. After all, she's going to make a mask of me, and pin me down, daily, to burning beams of recovery. You have to love something like that, or it will never work out, that relationship between patient and doctor.
I plan to love anything that promises me life. Run toward it like a totem pole that I need to dance about--and they probably have one of those somewhere here. Let's hope it's on a south facing slope and the day is bright as it was in Pacific Heights!
Our first appointment on the road to total cancer recovery took us to Pacific Heights, to see the oncologist, Dr. Kramer. His office is in a professional cube on a hillside bathed in sunlight, mocking the swiss sweater that I had on, making me regret that I was ever born with body temperature. Right now, by contrast, 45 minutes after said sun bath, I'm sitting on a bench in the shade on Hayes Street, Hayes Valley, freezing my ass off, glad of my sartorial choices. This is a lesson in SF living to the uninitiated. Never assume that the temperature that greets you will later meet you.
It would not be possible, here, to give you the entire flavor of my meeting with Dr. Kramer. Suffice it to say that he charmed me and gained every bit of my confidence he will need by his laconic and sardonic ways, which suit me, and soothe all anxiousness in my soul. While taking my family history I suggested that my father's biggest medical problem was that he was a jerk--to which the good doctor shot back in record time, "and I understand that problem is genetic...". This is exactly the person I want bathing me in toxicity.
It looks like, should my blood and hearing tests confirm my eligibility, that chemo will be a once every three weeks situation over a nine week treatment, 6 hours at a stretch. Something called CIS, or SIS (that's what it sounds like) platinum, which lingers in the system and apparently bitch slaps at 2 weeks after application. Good news? minimal hair loss. Bad news? Throat problems, a bit of nausea to fight, strong as Atlas' farts, apparently.
What also sells Dr. Kramer--and this is a lesson all doctor's would do well to emulate--is his staff. They are friendly and confident to a fault--and what I need right now, besides friendly, is confident. It's surprisingly difficult to know, coming from Indiana, if providers in California are actually considered "in-network"--no one would flat out answer that question, at least not from Anthem--and when a doctor's office does, one does well to be a bit spurious of their knowledge. But this office runs like a frigging top. Hallelujah! One down, and not bad, in fact quite good.
Tomorrow, I go to have a check of the tube I use to eat, hoping that they can alleviate some of the constrictions that I deal with using this tiny feed system. I'd like them to give me the feeding equivalent of a laundry chute, something I could stick a rotisserie chicken in, but I am still well within sanity and reality--but something that could bear at least some tiny chunks in a blend would allow me to vastly extend my range of edibles. My weight would love that, thank you very much.
The hearing test, by the way, is to establish whether this platinum stuff may compromise my hearing, which is a side effect of it. Seriously. Hearing loss. Who would have thought of that? If you see me with transistor hearing aids growing out of my ears you'll know what happened.
Also tomorrow, the radiation oncologist--and let's hope her sense of humor is as wonderfully engaging. After all, she's going to make a mask of me, and pin me down, daily, to burning beams of recovery. You have to love something like that, or it will never work out, that relationship between patient and doctor.
I plan to love anything that promises me life. Run toward it like a totem pole that I need to dance about--and they probably have one of those somewhere here. Let's hope it's on a south facing slope and the day is bright as it was in Pacific Heights!
Sunday, April 7, 2013
Lazy Sunday with no cupcakes
I had my first adventure at Whole Foods while Scott and Terry went swimming today. Being a bit of a Whole Foods neophyte I have the verve of the newly initiated. The worst thing about Whole Foods in the Haight is that they have a tiny parking lot, and lots of Audis that wish to park there. There's a confluence of Panhandle, Hippie, Stoner and Self-Important traffic that mashes against one another at this corner of Stanyan and Haight. The potential accidents involve several strata of socio-economics and enough marijuana to excite the entire state of Indiana. To say that one could have a contact high by strolling around here is to put it mildly.
I was actually trolling that store with the idea that I'd find some brownies, of which they are masters--but no brownies today. I have found that one can mash and smash and then blend some brownies, cut them with enough milk, to make a rich type of chocolate milk suitable for a tube. The fact that such a mix probably has 600 calories in it is not a problem. Today, clothes on, wallet in my pocket, shoes on my feet, I weighed 145. This is starting to unnerve me and I'm ready to gain.
I've been trying--I've done lots of milk shakes and lots of nutren and anything I can think of that will fit in the tube I've tried, but it's not enough. Much as I'd like to gain ten pounds before chemo, there's no way that will happen, unless I walk in with stones in my pockets.
Tomorrow at 2 I have my first appointment with the oncologist--and I'm not nervous but excited. I'm ready for him to look at me and say--great, let's start making you glow! Roger Ebert, my sister's insidious decline, these things are, to me, signs from the universe: get it going or end up like this. It was only after surgery and after a fair couple of weeks of recovery that my surgeons said--we want you to get the chemo/radiation going, your cancer was particularly aggressive. Perhaps it was good for me not to know that, but somehow given how fast it grew, I think I had that idea firmly planted in my subconscious. Some part of me understood this wasn't some pansy tumor that skipped by and decided to decline in my commodious mouth.
I wonder if out of the gazillions of cells that were excised along with my lymph nodes and tongue, and the uncountable numbers that died when they lifted my jaw/their home out of my body, there weren't a million or so that managed to escape and are even now quietly building a condo in the upper palate instead of destroying the floor or the mouth. It's not out of the realm of possibility, so I would like to introduce them to streams of radiation and baths of sickeningly strong medications. Stuff that has the whiff of the future in it, and likely to evoke the torture of the recent past upon my cancer cells.
I'm truly grateful for this experience in many ways. I've learned a great deal, factually and emotionally, about other people, and about myself. I've been challenged to accept a vastly changed appearance, I've been asked to rise above smaller concerns that run other people's lives, like pec size, and bicep curve--and so far, i'm doing ok. I found out I truly am tough in ways that are better and more relevant than a UFC Cage Fight. But please do not mistake any moment of gratitude for these lessons with a scintilla of gratitude for this grotesque cancer that forced them upon me.
I could have continued to be happy on lazy Sundays, eating what I wanted, kissing when I thought it right, lazing about or jogging, whatever struck my fancy. Having a cupcake, which sounds awesome to me right now.
Instead on this Sunday, my shower took 15 minutes, but it took 45 minutes to change my bandages and clean my wounds which yet need to heal in various places. It took--instead of 5 minutes, 20 minutes to walk down the hill to Casto with Scott, deliberate paces all the way. I needed to hold my feeding tube with one hand and try to scrub my face with the other; I had to carefully clean around what was a nascent bed sore on my rump to keep it from re-infection.
I had to shave sort of around the skin that has been pulled up to replace what was taken. I had to hear that the cut made across my neck is healing well and will likely not scar--imagine that, neck cut, dissected like a freshmen's frog in Biology class, and I'm alive...but I'm not a bit grateful to this disgusting cancer for that.
No, friends, the fight is on. I understand where my gratitude lies. It remembers warm mornings with cupcakes and coffee, and has nothing but fondness for who I used to be. My gratitude likes who I am now, a lot. The fact that it hates the path it took to get here is no more strange than the fact that your dog may love to ride in the car and hate to end up at the vet....it's just an inverse of the order in my life.
Should you wake on Monday and find yourself without cancer, I'd like to urge you to have one truly wonderful, truly different, and utterly non-nutritional thing for breakfast. Do it for me. Cupcake, pecan roll, cookie, pancake, waffle-you name it. I hope it brings you the type of joy I'm chasing out here, brownie milk, soupy chemicals, flows of radiation and all.
I was actually trolling that store with the idea that I'd find some brownies, of which they are masters--but no brownies today. I have found that one can mash and smash and then blend some brownies, cut them with enough milk, to make a rich type of chocolate milk suitable for a tube. The fact that such a mix probably has 600 calories in it is not a problem. Today, clothes on, wallet in my pocket, shoes on my feet, I weighed 145. This is starting to unnerve me and I'm ready to gain.
I've been trying--I've done lots of milk shakes and lots of nutren and anything I can think of that will fit in the tube I've tried, but it's not enough. Much as I'd like to gain ten pounds before chemo, there's no way that will happen, unless I walk in with stones in my pockets.
Tomorrow at 2 I have my first appointment with the oncologist--and I'm not nervous but excited. I'm ready for him to look at me and say--great, let's start making you glow! Roger Ebert, my sister's insidious decline, these things are, to me, signs from the universe: get it going or end up like this. It was only after surgery and after a fair couple of weeks of recovery that my surgeons said--we want you to get the chemo/radiation going, your cancer was particularly aggressive. Perhaps it was good for me not to know that, but somehow given how fast it grew, I think I had that idea firmly planted in my subconscious. Some part of me understood this wasn't some pansy tumor that skipped by and decided to decline in my commodious mouth.
I wonder if out of the gazillions of cells that were excised along with my lymph nodes and tongue, and the uncountable numbers that died when they lifted my jaw/their home out of my body, there weren't a million or so that managed to escape and are even now quietly building a condo in the upper palate instead of destroying the floor or the mouth. It's not out of the realm of possibility, so I would like to introduce them to streams of radiation and baths of sickeningly strong medications. Stuff that has the whiff of the future in it, and likely to evoke the torture of the recent past upon my cancer cells.
I'm truly grateful for this experience in many ways. I've learned a great deal, factually and emotionally, about other people, and about myself. I've been challenged to accept a vastly changed appearance, I've been asked to rise above smaller concerns that run other people's lives, like pec size, and bicep curve--and so far, i'm doing ok. I found out I truly am tough in ways that are better and more relevant than a UFC Cage Fight. But please do not mistake any moment of gratitude for these lessons with a scintilla of gratitude for this grotesque cancer that forced them upon me.
I could have continued to be happy on lazy Sundays, eating what I wanted, kissing when I thought it right, lazing about or jogging, whatever struck my fancy. Having a cupcake, which sounds awesome to me right now.
Instead on this Sunday, my shower took 15 minutes, but it took 45 minutes to change my bandages and clean my wounds which yet need to heal in various places. It took--instead of 5 minutes, 20 minutes to walk down the hill to Casto with Scott, deliberate paces all the way. I needed to hold my feeding tube with one hand and try to scrub my face with the other; I had to carefully clean around what was a nascent bed sore on my rump to keep it from re-infection.
I had to shave sort of around the skin that has been pulled up to replace what was taken. I had to hear that the cut made across my neck is healing well and will likely not scar--imagine that, neck cut, dissected like a freshmen's frog in Biology class, and I'm alive...but I'm not a bit grateful to this disgusting cancer for that.
No, friends, the fight is on. I understand where my gratitude lies. It remembers warm mornings with cupcakes and coffee, and has nothing but fondness for who I used to be. My gratitude likes who I am now, a lot. The fact that it hates the path it took to get here is no more strange than the fact that your dog may love to ride in the car and hate to end up at the vet....it's just an inverse of the order in my life.
Should you wake on Monday and find yourself without cancer, I'd like to urge you to have one truly wonderful, truly different, and utterly non-nutritional thing for breakfast. Do it for me. Cupcake, pecan roll, cookie, pancake, waffle-you name it. I hope it brings you the type of joy I'm chasing out here, brownie milk, soupy chemicals, flows of radiation and all.
Friday, April 5, 2013
Onward, Pioneer
I'll have taken up my residence in San Francisco by this time tomorrow, and I already know quite a bit about the city, the apartment, the guy there waiting for me to arrive. I have an app on my phone that helps me find a transit route to here or there, and I know how to get to Whole Foods in the Haight with virtually no thought whatsoever. The closest Super Duper Burger? A breeze. Bi-Rite Creamery (that ice cream!), straight down the hill and keep walking until you hit the line. Walgreen's at 18th and Castro which is your last chance destination for Puffs with Aloe and Chocolate Haagen Dazs if Mollie Stones is already closed.
San Francisco is so effortlessly charming that even without these small certainties, I wouldn't feel daunted. It's one of the friendliest places I've ever been, and once understood, it makes every effort to understand back. In that way, it is the most un-Midwestern place I've ever been, and I revel in that, while flaunting my flat vowels and resolutely unmusical American English that was born in the refrigerator of the Fort Wayne Dialect.
Will I miss Bloomington as I'm away? Probably not much. I returned here in 1996 from New York City and from that time forward have puzzled at why I came back here. Bloomington is both smug and paranoid, a clique town without coordination between its gears. The stratification, and stubborn lack of planning, foresight or amelioration are things that tastemakers here seem proud of; after all, they keep electing the same lack of vision to effectuate the empty plans of those who wish no change but affect haplessness when change arrives. If the San Francisco slogan is "we strive" then Bloomington's would have to be "oh, well...". Passive aggressive as Hollywood starlet who will assure you her boobs and lips and rump uplift are real while asking why you're so rude as to stare at her surgery scars.
While I have a small, and hopefully to be growing, circle of acquaintance in SF, I have many people in Bloomington that I like, and many that I love, a great deal. That's the point of great divergence between my civic and my personal allegiances. I've lived with Charles for 16 years, I've known many people here for various periods of years, there is a network of women here I love to have lunch with (an ALLGAM is an "All Girl and Mark" lunch; an ALLGAMAC is an "All Girl and Mark and Charles" lunch)--in fact, Bloomington--or more rightly, IU, has a mind-boggling array of talented, fun, smart, beautiful women who really like to have lunch with me! I'll miss that while I'm gone.
I look forward to treatment in San Francisco, though, that's cutting edge and patient-focused--very attuned to an individual case. My experience in consultations here were less promising. I'm sure on an individual basis the providers were good, but when they snark about each other upfront, it's hard to believe they can work together to make me whole. No thanks, I don't need to play "Aunt Bee has a Hissy Fit" on Mayberry RFD when it comes to this cancer that grew to take over my mouth in barely a month.
I'm hoping that when I come back to eating, it will be the snap of a bit of sourdough that welcomes me, drizzled with olive oil that was pressed a few miles away. Then, the ridiculous slow food organic burgers that have driven me nuts in SF, then the oatmeal at La Boulange every day for a week, with the big latte, and a palmier because I'm skinny--maybe 2.
Ultimately, I know I'll look up, oatmeal dribbling down my chin, to find that Scott is mid-granola and yogurt, trying not to laugh at me. Whether I am in mid-glow of chemo or mid-burn of radiation, or done with both, healing and and learning to speak, whatever San Francisco has become to me, it's been because of him that it revealed itself so thoroughly and with no pretense.
It's funny that once he offered to move to Indiana to be with me. We both know there's nothing here for him, or at least, nothing he wants. The year-round sports environment, the equipment, the networking, the innovation, the doctors, the food, the sunlight, the people, the vistas, the transit, the chocolate--there is no comparison that could be fair to Indiana when Indiana is so proud of not trying. His visits here have been trying to him in a way he's polite enough not to enumerate.
This will be my first flight, post-surgery, and my first flight as an officially disabled traveler. It takes a lot to arrange this sort of transfer. I purchased a ticket on USAir, and an upgraded seat so i could be near the front--when my plane lands in Phoenix, there's a sprint to get to the next one before take off. I wrote to US Air and explained my circumstances--how, harvested bone and all, new jaw, extreme weight loss and cane have slowed me down too much to do the Carl Lewis through the terminal--and they, man, have stepped up to the plate. I'm to be met with wheelchairs, and my front seat money refunded! I give them a lot of credit for something I didn't even ask to receive!
My bigger worry will be TSA, who will have to wand over the metal hinges that attach my new jaw, feel up my feeding tube, poke at my tracheotomy and allow my liquid nutrition and my portable suction unit onto the plane, probably breaking at least 18 of their bromides against certain disaster. One arms oneself with proof beyond the obviousness of one's appearance--a letter from the doctor, detailing where the metal lies and what the needs are...and then one hopes. There's also an email address where one can alert them ahead of time of a gimp arrival--but they suggest 72 hours and I think I did it at 48. I'm not utterly certain of victory.
But, like everything so far, I hope if I walk toward it looking confident, it will take my confidence well.
I will likely be off tomorrow, and hoping that you are too. May the weekend find our relocations pleasant, our state of mind positive, our experiences ripe for retelling. Take care.
San Francisco is so effortlessly charming that even without these small certainties, I wouldn't feel daunted. It's one of the friendliest places I've ever been, and once understood, it makes every effort to understand back. In that way, it is the most un-Midwestern place I've ever been, and I revel in that, while flaunting my flat vowels and resolutely unmusical American English that was born in the refrigerator of the Fort Wayne Dialect.
Will I miss Bloomington as I'm away? Probably not much. I returned here in 1996 from New York City and from that time forward have puzzled at why I came back here. Bloomington is both smug and paranoid, a clique town without coordination between its gears. The stratification, and stubborn lack of planning, foresight or amelioration are things that tastemakers here seem proud of; after all, they keep electing the same lack of vision to effectuate the empty plans of those who wish no change but affect haplessness when change arrives. If the San Francisco slogan is "we strive" then Bloomington's would have to be "oh, well...". Passive aggressive as Hollywood starlet who will assure you her boobs and lips and rump uplift are real while asking why you're so rude as to stare at her surgery scars.
While I have a small, and hopefully to be growing, circle of acquaintance in SF, I have many people in Bloomington that I like, and many that I love, a great deal. That's the point of great divergence between my civic and my personal allegiances. I've lived with Charles for 16 years, I've known many people here for various periods of years, there is a network of women here I love to have lunch with (an ALLGAM is an "All Girl and Mark" lunch; an ALLGAMAC is an "All Girl and Mark and Charles" lunch)--in fact, Bloomington--or more rightly, IU, has a mind-boggling array of talented, fun, smart, beautiful women who really like to have lunch with me! I'll miss that while I'm gone.
I look forward to treatment in San Francisco, though, that's cutting edge and patient-focused--very attuned to an individual case. My experience in consultations here were less promising. I'm sure on an individual basis the providers were good, but when they snark about each other upfront, it's hard to believe they can work together to make me whole. No thanks, I don't need to play "Aunt Bee has a Hissy Fit" on Mayberry RFD when it comes to this cancer that grew to take over my mouth in barely a month.
I'm hoping that when I come back to eating, it will be the snap of a bit of sourdough that welcomes me, drizzled with olive oil that was pressed a few miles away. Then, the ridiculous slow food organic burgers that have driven me nuts in SF, then the oatmeal at La Boulange every day for a week, with the big latte, and a palmier because I'm skinny--maybe 2.
Ultimately, I know I'll look up, oatmeal dribbling down my chin, to find that Scott is mid-granola and yogurt, trying not to laugh at me. Whether I am in mid-glow of chemo or mid-burn of radiation, or done with both, healing and and learning to speak, whatever San Francisco has become to me, it's been because of him that it revealed itself so thoroughly and with no pretense.
It's funny that once he offered to move to Indiana to be with me. We both know there's nothing here for him, or at least, nothing he wants. The year-round sports environment, the equipment, the networking, the innovation, the doctors, the food, the sunlight, the people, the vistas, the transit, the chocolate--there is no comparison that could be fair to Indiana when Indiana is so proud of not trying. His visits here have been trying to him in a way he's polite enough not to enumerate.
This will be my first flight, post-surgery, and my first flight as an officially disabled traveler. It takes a lot to arrange this sort of transfer. I purchased a ticket on USAir, and an upgraded seat so i could be near the front--when my plane lands in Phoenix, there's a sprint to get to the next one before take off. I wrote to US Air and explained my circumstances--how, harvested bone and all, new jaw, extreme weight loss and cane have slowed me down too much to do the Carl Lewis through the terminal--and they, man, have stepped up to the plate. I'm to be met with wheelchairs, and my front seat money refunded! I give them a lot of credit for something I didn't even ask to receive!
My bigger worry will be TSA, who will have to wand over the metal hinges that attach my new jaw, feel up my feeding tube, poke at my tracheotomy and allow my liquid nutrition and my portable suction unit onto the plane, probably breaking at least 18 of their bromides against certain disaster. One arms oneself with proof beyond the obviousness of one's appearance--a letter from the doctor, detailing where the metal lies and what the needs are...and then one hopes. There's also an email address where one can alert them ahead of time of a gimp arrival--but they suggest 72 hours and I think I did it at 48. I'm not utterly certain of victory.
But, like everything so far, I hope if I walk toward it looking confident, it will take my confidence well.
I will likely be off tomorrow, and hoping that you are too. May the weekend find our relocations pleasant, our state of mind positive, our experiences ripe for retelling. Take care.
Thursday, April 4, 2013
Protection
Someone who is willing to throw themselves in front of the bus about to hit you while pushing you out of the way truly has your best interests at heart.
On one hand, you may wish to scold that person for having no preservation instincts for themselves or placing too low a value upon their own survival. That scold may come too late, especially in the afore-mentioned scenario, but guaranteed you will practice that harangue in your mind for the rest of your life.
A similar dilemma has opened itself involving Scott and my relatives with whom he is a texting buddy. He established his credibility with several of my nieces, nephews and their spouses by being their eyes and ears at my surgery. This prevented what both of us wished preventing--long trips to Indianapolis for them that were not viable (they live 2-2 1/2 hours north and all work, of course), and on my part, the guilt I'd feel being ill and requiring their presence when I'm clearly too out of it to appreciate the gesture. Scott both helped and healed in this instance.
Apparently, he was a very charming correspondent as he has gone on to endear himself to my family by other reports, of which I've been kept dumb. That's fine, of course--I want my extended family to understand my choice of partner, I'm happy they approve and as circumstances draw us all closer--I want them to feel comfortable, and I want to be comfortable, being ourselves.
I've always been the gay uncle, I've always been the gay brother, I've always been the odd man out. Let's say that in a blue chambray family, I've always been the plaid with the vividly magenta stripe. My peripatetic ways, my restlessness, my desires to see and know the world are all not Price virtues. Stolid desires for buying a piece of Northern Indiana property and working in one place for 47 or so years would be closer to the ideal--but of course, even that ideal is changing to suit the times. Its geographic locus hasn't changed, even if it admits more of divorce and new loves, new jobs and different outlooks, than it did in decades past. I may not be wholly magenta anymore but there's still some chartreuse on my actions.
Scott suits the slightly more adventurous, younger, and more diverse Prices quite well.
I find that his continued reporting on me has crossed into territory that I might have found disturbing at one time, but now understand differently. During my recent sudden trip north he and my niece were having a text conversation that included warnings of how to react to my appearance--which admittedly is different these days. My new jaw is not completely at home on my old face--there's yet swelling along incision lines, and where muscle has been pulled up and reintroduced to jaw née fibia. I am 35 pounds lighter than they've ever known me. I do not move as fast, I occasionally use a cane. I cannot speak quite as clearly as I used to, and the type of words I'm want to say do have much more impact when enunciated clearly.
It's not lost to me that I am a surprise. I am occasionally a surprise to myself when I get up in the middle of the night to suction out a bit of problematic phlegm and see myself in the mirror--there's a long, dragon-looking incision where tissue was taken out of my chest to fill what used to be my tongue--and my left nipple occupies a part of my body that is clearly not were it was born to be. The pecs I tried to have are gone, victims of a long period of too little nourishment and the thudding weight loss so often associated with cancer. My biceps--and I did really like them--gone! My mouth has not resettled yet, so often my lower lip feels balloonish, while the area around the new jaw is still without much sensation. Yes, that is a surprise, not always a good one, either.
Scott's warning might have--in another life, or to another person--be constructed as a dishonesty to the fact that he tells me I'm sexy and attractive still--but to this person now, I find what he's doing consistent to his nature to protect. Sweet, even. He has shown time and time again that the bus that's heading for me will meet his body before mine.
I could see that I surprised some of my family, but frankly, evenly with all these changes, I haven't had a personality transplant. I may not be able to tell my brother Jim that if he doesn't shut up I'd jam a foot up his backside, but pantomime and indication, I find, still work to assure my family that is exactly what I mean. And when my nieces act up, certain eye rolls and even my poor enunciation make "bitch, please" utterly understandable. I've never stood on ceremony with any of my relatives, and I don't intend to climb the cancer podium now.
Always the snappy one liner and more vulgar uncle, I hope I'm also the one that cares enough about them to want them to know me with no filters--and the only objection I'd ever find to Scott warning them not to over-react at my appearance is that I would consider their over-reaction part and parcel of the life we have. I do love them, and I'm certain they love me. Even at my most Frankenstein-ish with all the surgical staples still in, I'd like to think they could have dealt well.
I want them all to know that no matter what life throws at you, that you can get up and act with dignity and walk with grace while people stare at you. I want them to accept that cancer, very much part of our family's heritage, does not mean that they can give up and die. In fact, in honor of my sister and my mother--both incredible fighters--our legacy is to bitch slap back at cancer and refuse to allow it to rule everything.
It's hard to object to protection that comes from love. In fact, I don't really want to object at all. When I found out from one of my nieces what my erstwhile bulldog had been up to, I admit I laughed. A laugh that was born out the delight that someone would want to do that for me, and how thoughtful it actually was to believe that I needed a little buffering--and who knows, perhaps he was right.
I could have used him at the Starbucks I stopped at Wednesday morning. Yes, I cannot speak totally clearly, and I know this--but when I say "small coffee" frankly it is not THAT hard to understand. But the clerk who made me repeat this six times, and then turned to her coworker and said--"can you tell what this guy is saying? I sure can't" was not interested in trying. To her credit, the coworker got it on the seventh (but for her, first) try. You know what--bitch, please. The clerk by the way had obviously had too many breakfast pastries on that morning shift of hers and needn't have looked down on a 52 year old so-far-cancer-survivor without much of a tongue. Had my bulldog been around, she wouldn't have dared pull that stunt. That, my friends, is what protection and love are for...
On one hand, you may wish to scold that person for having no preservation instincts for themselves or placing too low a value upon their own survival. That scold may come too late, especially in the afore-mentioned scenario, but guaranteed you will practice that harangue in your mind for the rest of your life.
A similar dilemma has opened itself involving Scott and my relatives with whom he is a texting buddy. He established his credibility with several of my nieces, nephews and their spouses by being their eyes and ears at my surgery. This prevented what both of us wished preventing--long trips to Indianapolis for them that were not viable (they live 2-2 1/2 hours north and all work, of course), and on my part, the guilt I'd feel being ill and requiring their presence when I'm clearly too out of it to appreciate the gesture. Scott both helped and healed in this instance.
Apparently, he was a very charming correspondent as he has gone on to endear himself to my family by other reports, of which I've been kept dumb. That's fine, of course--I want my extended family to understand my choice of partner, I'm happy they approve and as circumstances draw us all closer--I want them to feel comfortable, and I want to be comfortable, being ourselves.
I've always been the gay uncle, I've always been the gay brother, I've always been the odd man out. Let's say that in a blue chambray family, I've always been the plaid with the vividly magenta stripe. My peripatetic ways, my restlessness, my desires to see and know the world are all not Price virtues. Stolid desires for buying a piece of Northern Indiana property and working in one place for 47 or so years would be closer to the ideal--but of course, even that ideal is changing to suit the times. Its geographic locus hasn't changed, even if it admits more of divorce and new loves, new jobs and different outlooks, than it did in decades past. I may not be wholly magenta anymore but there's still some chartreuse on my actions.
Scott suits the slightly more adventurous, younger, and more diverse Prices quite well.
I find that his continued reporting on me has crossed into territory that I might have found disturbing at one time, but now understand differently. During my recent sudden trip north he and my niece were having a text conversation that included warnings of how to react to my appearance--which admittedly is different these days. My new jaw is not completely at home on my old face--there's yet swelling along incision lines, and where muscle has been pulled up and reintroduced to jaw née fibia. I am 35 pounds lighter than they've ever known me. I do not move as fast, I occasionally use a cane. I cannot speak quite as clearly as I used to, and the type of words I'm want to say do have much more impact when enunciated clearly.
It's not lost to me that I am a surprise. I am occasionally a surprise to myself when I get up in the middle of the night to suction out a bit of problematic phlegm and see myself in the mirror--there's a long, dragon-looking incision where tissue was taken out of my chest to fill what used to be my tongue--and my left nipple occupies a part of my body that is clearly not were it was born to be. The pecs I tried to have are gone, victims of a long period of too little nourishment and the thudding weight loss so often associated with cancer. My biceps--and I did really like them--gone! My mouth has not resettled yet, so often my lower lip feels balloonish, while the area around the new jaw is still without much sensation. Yes, that is a surprise, not always a good one, either.
Scott's warning might have--in another life, or to another person--be constructed as a dishonesty to the fact that he tells me I'm sexy and attractive still--but to this person now, I find what he's doing consistent to his nature to protect. Sweet, even. He has shown time and time again that the bus that's heading for me will meet his body before mine.
I could see that I surprised some of my family, but frankly, evenly with all these changes, I haven't had a personality transplant. I may not be able to tell my brother Jim that if he doesn't shut up I'd jam a foot up his backside, but pantomime and indication, I find, still work to assure my family that is exactly what I mean. And when my nieces act up, certain eye rolls and even my poor enunciation make "bitch, please" utterly understandable. I've never stood on ceremony with any of my relatives, and I don't intend to climb the cancer podium now.
Always the snappy one liner and more vulgar uncle, I hope I'm also the one that cares enough about them to want them to know me with no filters--and the only objection I'd ever find to Scott warning them not to over-react at my appearance is that I would consider their over-reaction part and parcel of the life we have. I do love them, and I'm certain they love me. Even at my most Frankenstein-ish with all the surgical staples still in, I'd like to think they could have dealt well.
I want them all to know that no matter what life throws at you, that you can get up and act with dignity and walk with grace while people stare at you. I want them to accept that cancer, very much part of our family's heritage, does not mean that they can give up and die. In fact, in honor of my sister and my mother--both incredible fighters--our legacy is to bitch slap back at cancer and refuse to allow it to rule everything.
It's hard to object to protection that comes from love. In fact, I don't really want to object at all. When I found out from one of my nieces what my erstwhile bulldog had been up to, I admit I laughed. A laugh that was born out the delight that someone would want to do that for me, and how thoughtful it actually was to believe that I needed a little buffering--and who knows, perhaps he was right.
I could have used him at the Starbucks I stopped at Wednesday morning. Yes, I cannot speak totally clearly, and I know this--but when I say "small coffee" frankly it is not THAT hard to understand. But the clerk who made me repeat this six times, and then turned to her coworker and said--"can you tell what this guy is saying? I sure can't" was not interested in trying. To her credit, the coworker got it on the seventh (but for her, first) try. You know what--bitch, please. The clerk by the way had obviously had too many breakfast pastries on that morning shift of hers and needn't have looked down on a 52 year old so-far-cancer-survivor without much of a tongue. Had my bulldog been around, she wouldn't have dared pull that stunt. That, my friends, is what protection and love are for...
Tuesday, April 2, 2013
Sad Travelogues
Mid-morning on Tuesday I was told my sister was dying. I was in my bedroom and the east and south were filled with sunlight. We are, if you're not ln Bloomington, having a week of lovely sunshine. Spring has not come early to us, and usually it comes with rain rain rain. This year, it's moved from cold to cool to cool and dry. I had ignored my Ipad all morning, and was in the bedroom retrieving it when I saw the message from my niece.
I had just had a conversation with Charles about how much I wanted to see my sister before I left for San Francisco this Saturday--but doubted I could drive. My right leg, vastly improved, is still a bit stiff and still appreciates being elevated more than pushing on an accelerator, not just for 2 miles around town, 60 miles to Indy but certainly more than 198 miles to Warsaw.
But who thinks when you look outside and it's sharp enough to hurt your eyes--the trees have no leaves to filter the light, and colors are all washed out, nothing absorbs the edge of the white-yellow sunlight; too, nothing takes the harshness of those words--my mother, your sister, my wife, is dying. Hospice says it may be now or never.
I rented an Optima, because I was afraid a Versa could not go fast enough. I proceeded to load that car. A humidity machine, a suction unit, drugs, food, clothes, drugs, supplies to address the possibilities, things for when other things go wrong, my panda pillow given to me in the hospital by Katie and Oner...it goes everywhere because my rump has so little padding these days.
My sister is the oldest in the family, I am the youngest. She had turned 14 the month before I was born, so I was simply an inconvenience, another one, the fifth. My memories of her as a child are sketchy, but there is one profound remembrance that I can't hold back. Matt and I, 6 and 4 at the time, took Barb's prom dress, a perfect beautiful piece of 60's couture, and we each put it on and ran around the yard in it. It was likely a typical Northern Indiana Spring in 1964, likely damp, and how the dress faired I can't say exactly--all I remember was the delightful freak out.
On November 20, 1966, my sister got married on my 6th birthday. I've gotten a lot of traction out of this for many years, a lot of howling and claims of emotional damage--and perhaps that IS what's wrong with me, it's possible. I was a ring bearer in a white jacket and snow fell, and to this day when it snows on my birthday I feel lucky, and chosen.
My sister has two daughters and 11 grandchildren and she has been married to Dale for 46 years. She has been a housewife, a continuing education student, and a librarian. She loved working at the library so much that even when she had lost 2/3rds of her body weight and could not chew, that's where she most wanted to be--and she only retired just prior to her last surgery, the one that was pitched to her as "this or hospice." Now there is hospice anyway.
I'd like to say that my sister will live but she won't--technically, none of us will We will find our eventuality and eventually, someone will get the call or text about us too. I would like you to know not that my sister was happy--I think she is and has been--but that she has lead a life that was both normal and exceptional like many of us.
Especially lately, as she has suffered through the end game of mouth and neck cancer, she has inspired me--so right now, I'm taking this poorly, and I know it. I do not know what to do with myself, I cannot tell how I should act. I'm just not at home in my own emotions, with my sister dying too young, and too early, when I have so many things to ask her about how I manage this cancer, how I do as well as she did, how I face it when it returns, how I refuse to give up. She could tell me all these things, but right now, she's too busy trying to stay alive, and failing.
I proved that I could drive myself for 3 hours and survive. Hooray for me. I proved that I could stand up to another blow of stress and deal well enough that no one knows how utterly at sea I am. I have one sister. My oldest brother, one year younger, is getting older. My other brother is your garden variety homophobe taught by a lesser god that he's a greater being...so I am losing yet again. Something that means more than my tongue or a goddamn hamburger or the speed at which I'm recovering--I'm losing a reason that recovery has been so sweet.
I want them to be wrong, but having held her hand this afternoon while her body refused food, I want them to be right in the best possible way. That my sister, with all the dignity she can attract, march off to the light in the corner of the room, going wherever we go, and finding a library there that needs a dedicated worker.
Barbara Price Hudson, sorry about that prom dress, ok?
I had just had a conversation with Charles about how much I wanted to see my sister before I left for San Francisco this Saturday--but doubted I could drive. My right leg, vastly improved, is still a bit stiff and still appreciates being elevated more than pushing on an accelerator, not just for 2 miles around town, 60 miles to Indy but certainly more than 198 miles to Warsaw.
But who thinks when you look outside and it's sharp enough to hurt your eyes--the trees have no leaves to filter the light, and colors are all washed out, nothing absorbs the edge of the white-yellow sunlight; too, nothing takes the harshness of those words--my mother, your sister, my wife, is dying. Hospice says it may be now or never.
I rented an Optima, because I was afraid a Versa could not go fast enough. I proceeded to load that car. A humidity machine, a suction unit, drugs, food, clothes, drugs, supplies to address the possibilities, things for when other things go wrong, my panda pillow given to me in the hospital by Katie and Oner...it goes everywhere because my rump has so little padding these days.
My sister is the oldest in the family, I am the youngest. She had turned 14 the month before I was born, so I was simply an inconvenience, another one, the fifth. My memories of her as a child are sketchy, but there is one profound remembrance that I can't hold back. Matt and I, 6 and 4 at the time, took Barb's prom dress, a perfect beautiful piece of 60's couture, and we each put it on and ran around the yard in it. It was likely a typical Northern Indiana Spring in 1964, likely damp, and how the dress faired I can't say exactly--all I remember was the delightful freak out.
On November 20, 1966, my sister got married on my 6th birthday. I've gotten a lot of traction out of this for many years, a lot of howling and claims of emotional damage--and perhaps that IS what's wrong with me, it's possible. I was a ring bearer in a white jacket and snow fell, and to this day when it snows on my birthday I feel lucky, and chosen.
My sister has two daughters and 11 grandchildren and she has been married to Dale for 46 years. She has been a housewife, a continuing education student, and a librarian. She loved working at the library so much that even when she had lost 2/3rds of her body weight and could not chew, that's where she most wanted to be--and she only retired just prior to her last surgery, the one that was pitched to her as "this or hospice." Now there is hospice anyway.
I'd like to say that my sister will live but she won't--technically, none of us will We will find our eventuality and eventually, someone will get the call or text about us too. I would like you to know not that my sister was happy--I think she is and has been--but that she has lead a life that was both normal and exceptional like many of us.
Especially lately, as she has suffered through the end game of mouth and neck cancer, she has inspired me--so right now, I'm taking this poorly, and I know it. I do not know what to do with myself, I cannot tell how I should act. I'm just not at home in my own emotions, with my sister dying too young, and too early, when I have so many things to ask her about how I manage this cancer, how I do as well as she did, how I face it when it returns, how I refuse to give up. She could tell me all these things, but right now, she's too busy trying to stay alive, and failing.
I proved that I could drive myself for 3 hours and survive. Hooray for me. I proved that I could stand up to another blow of stress and deal well enough that no one knows how utterly at sea I am. I have one sister. My oldest brother, one year younger, is getting older. My other brother is your garden variety homophobe taught by a lesser god that he's a greater being...so I am losing yet again. Something that means more than my tongue or a goddamn hamburger or the speed at which I'm recovering--I'm losing a reason that recovery has been so sweet.
I want them to be wrong, but having held her hand this afternoon while her body refused food, I want them to be right in the best possible way. That my sister, with all the dignity she can attract, march off to the light in the corner of the room, going wherever we go, and finding a library there that needs a dedicated worker.
Barbara Price Hudson, sorry about that prom dress, ok?
Subscribe to:
Posts (Atom)