--"come on, baby, can you bleed like me?"--Garbage "Bleed Like Me"
Well, can you? I can do it at the drop of a hat--out of a tumor, or from a hidden unknown source in my neck. From my mouth, a bit, and even my nose gets in on the action. Lately the score is: Bleeding--two shirts, one comforter, an entire sheet set, a mattress pad, a pillow, one pair of pants; Mark--zero.
Ok, I'll admit this much--I think I know why my chest tumor has taken up the bleeds again, and I think it's my fault. I've elevated my head slightly more, my tower of pillows growing to reflect that elevation=ease of snot flow. It makes sleep easier to achieve, but once there, laying on my preferred left side where Krakatoa resides, I slip downwards, pinching the tumor in my body's increasingly pretzelfying movements. A squeezed Krakatoa is, I think, a bleeding one. So, a couple of Indiana Chainsaw Massacres later and I'm a bit wiser about where and how I lay my head, left side down, no matter the hour.
The neck, well, that's a different story. My theory is that the constantly changing geography of my face is causing pull and problems, that result in bleeds that are unexplained--and I may be right. Or the body is just spontaneously bleeding for the hell of it because lately, we've not been doing much. Either way, it's grossly unfair--the blood pools in my throat and I can't expel it, so it sits there for a while combining with snot until it's got the heft to hork up. I know I promised to be less gross this year but I couldn't help that one.
Tomorrow I'll go to Bloomington Hopsital for a pre-op interview--this is for a biopsy of the skin around the tumor that they'll be doing on February 3rd. Two surgeons have looked at, poked at, tsked at, Krakatoa in the past couple of weeks, and the consensus is: more information, please. The skin around my tumor, a place of vast radiation damage is reddish, permanently, and to them that waves a cancer flag--and if the skin itself is cancerous, there's no hope that I'll heal well after the type of surgery that's been planned.
I'm of two minds here. The planned surgery has some Rumsfeldianism in it--one cannot know, even if the skin is not cancerous, how well one will heal after someone digs something out of the chest wall and grafts skin and creates muscle flaps from back muscle to cover it. One cannot be sure at this point that the missing back muscle won't create Bloomington's newest Quasimodo. One cannot know, now, here, that this surgery is without risk of infection or error, or that the graft itself will actually take and the flap itself will actually work.
The other mind? Get this fucking tumor off me. Get this shit done. Quasimodo? Fuck it. I already look like a goddamn rodeo clown, let the shit rip. This second mind, that's Old Mark. The first, new Mark trying to be all adult about this.
Yes, ultimately, I want this done. I want it done by March, hoping that in April I can dig out the garden and start planning what's really important: where would I put 50 day lilies? I found an online nursery with bags of 50 root starts for assorted day lilies and now all I can think of is the benighted patch of weed crusted crap just off my back deck-isn't that day lily heaven? hells yes! Wouldn't I like 20 new root starts for ferns in the shade garden? Like a dog wants ice cream.
Yes, I'm still trying to stay in the world, a bit, though it's been hard in the winter. My advancing breathing weirdness and effluviamania have caught me up in a housebound trap: I don't breathe well outside well its cold anymore. I can go to the store, but not walk the dog--I can check the mail, but I can't shovel. This bites into my social calendar; a body at rest has been tending to stay at rest.
Besides, I'm now playing Civilization V on the King Level with 9 AI civs arrayed against me, cheating their asses off. I hope I am always mentally capable of using a computer--once I'm confined to a nursing home, all they need do is park me in front of a half way powerful PC and I'll stay entertained for hours, being Vercingotrix or Shah Abbas I, kicking ass, hopefully not shitting my pants.
As far as what else the world brings, it brings the fact that my brother-in-law is closer than ever to hospice and life-end care. Dale is my almost last link to a past that truly seems to have happened in a different world. A world where I went wherever I wanted, walked in the woods all the time, played in the drainage ditch creek, took my dog Scruffy out three blocks from our house and suddenly we were in the country. A world that I grew to hate as a teenager, somewhat pimply, somewhat wild haired, somewhat needing to know that other gay people even existed.
Dale was always the practical fellow, the guy who married my sister. He was always standing back a bit when the family got together as if we were a bit much for him (I think we were), and more and more from this perspective, that was a smart decision. I don't know what my parents thought of him, really--I know they made a couple of disparaging remarks, but they made plenty of good ones. Whether they liked him or not, I think they came to respect him, and understand that he truly loved my sister, and she truly loved him.
Things change, right? They have to, one supposes. The neck sags a bit, a capilllary pops; a man dies and his history clangs alongside him to the cemetery; new birds show up as the weather mellows; new flowers crowd the websites that are my version of Winter Porn. Hopefully they will chop something out of me and I'll change too. Again. As if I hadn't already done that one thousand times, and wondered how many thousand more are to come.
Wednesday, January 28, 2015
Friday, January 2, 2015
HNY People!
I'm starting 2015 pretty much where I left 2014--in the Infusion Center at Premier Healthcare. I couldn't think of a better way to start; here, I have warmth, support and good memories of results I didn't expect from treatment. I'm better at the start of 2015 than I was at the start of 2014. Although I've lost weight recently, I'm still 26 pounds up on last year. My vitals are steady, and I have managed to not break anything, fall down, or otherwise screw up a good thing.
I spent NYE in my chair, with my electric throw, a schnoodle intermittently jumping on me for love and then bouncing over to Charles for more of the same. Rally is nothing if not practical--do not risk wearing out one set of hands when you have two to use.
This is, too, the start of gearing up for a surgery in the Spring, this time to excise what's left of the chest tumor, resect with some left side musculature and then graft with some skin from my thigh. I am under orders to eat and gain weight, as much as possible. It's rather hard to harvet epidermis when the thigh is not somewhat fattened. Like a calf in the desert with those wandering exodus Jews, apparently.
Surgery, while not fun, does at least provide the promise of knockout drugs, and let me go on record and say that I understand why Michael Jackson liked them so much. I usually wake from surgery like a baby staring at a white sheet. Nothingness happened to me during that twilight, nothingness upon waking. I come out of a refreshing sleep feeling, temporarily, way younger than I am.
If I'm not entirely sanguine about this impending experience, it's the worry that I won't heal as I should--this patch of skin was heavily irradiated and still, to this day, glows redder than any other spot. The skin that is here can ulcerate quickly and unpredictably, though with proper care, it does knit itself back together. I will take that small bit of optimistic healing to heart.
I made no resolutions for 2015--I'll let events show me how the wind blows, what I need to learn, how to act, what to do. I would though take the words "optimistic healing" to heart--to look forward to patching oneself together in the best way possible. But obviously healing isn't just a physical thing, the soul needs it, the heart needs it, the brain wants it.
I've been accused of being depressed in the past as if that was a weapon to be used against me, proof that I couldn't handle what was happening to me on my own. I defy anyone to live through what I have and not experience moments of depression--hell, when I see an empanada and realize I never ate enough of those, I have a moment of depression. I have one when some one talks to me and my hands are full and I can't answer. I will, for all the long glorious life I look forward to experiencing, have them. Why? Because I'm normal.
Optimistic healing works best with a dose of reality, and that's not a bad one. I'm not happy all the time, things don't always work out, not everything is care bear in Marktown. I don't expect that from others. In honor of optimistic healing, though, I will: refuse to wallow; refuse to read bullshit "woe is me" posts on Facebook from people I know to have jobs, places to live, and not just something to eat, but a huge variety of things to eat. My message? Life can suck, so suck it up; not over share the grossness that occupies a goodly portion of my life but focus on the way everything looks beautiful to me when the vile is cleaned up and gone. I will say this: there is nothing sweeter than a clean dressing and a clear nose.
The lesson of 2014, to me, was how much gold the dross is hiding. With a mere wiping of the eyes it becomes obvious that healing stands behind trauma, that a pervasive beauty is only poorly scrimmed by a gauzy ugliness in events. We live, we fall we get up. There's nothing new here, just a 54 year old dumbass going back to the kindergarten of life to figure out what survival is, what it will look like, how it will be.
And, as in real Kindergarten, survival has naps, all kinds of them, schnoodles (though a particular one), charleses who drive one to chemo and commiserates when needed, friends who insist I lunch with them so we can spend an hour or so cracking on one another, gossiping a bit, laughing a lot, and the wide open spaces of tomorrow, looking to be filled with joy, no bullshit, and a healthy dose of me.
Welcome 2015! I've been waiting for you.
I spent NYE in my chair, with my electric throw, a schnoodle intermittently jumping on me for love and then bouncing over to Charles for more of the same. Rally is nothing if not practical--do not risk wearing out one set of hands when you have two to use.
This is, too, the start of gearing up for a surgery in the Spring, this time to excise what's left of the chest tumor, resect with some left side musculature and then graft with some skin from my thigh. I am under orders to eat and gain weight, as much as possible. It's rather hard to harvet epidermis when the thigh is not somewhat fattened. Like a calf in the desert with those wandering exodus Jews, apparently.
Surgery, while not fun, does at least provide the promise of knockout drugs, and let me go on record and say that I understand why Michael Jackson liked them so much. I usually wake from surgery like a baby staring at a white sheet. Nothingness happened to me during that twilight, nothingness upon waking. I come out of a refreshing sleep feeling, temporarily, way younger than I am.
If I'm not entirely sanguine about this impending experience, it's the worry that I won't heal as I should--this patch of skin was heavily irradiated and still, to this day, glows redder than any other spot. The skin that is here can ulcerate quickly and unpredictably, though with proper care, it does knit itself back together. I will take that small bit of optimistic healing to heart.
I made no resolutions for 2015--I'll let events show me how the wind blows, what I need to learn, how to act, what to do. I would though take the words "optimistic healing" to heart--to look forward to patching oneself together in the best way possible. But obviously healing isn't just a physical thing, the soul needs it, the heart needs it, the brain wants it.
I've been accused of being depressed in the past as if that was a weapon to be used against me, proof that I couldn't handle what was happening to me on my own. I defy anyone to live through what I have and not experience moments of depression--hell, when I see an empanada and realize I never ate enough of those, I have a moment of depression. I have one when some one talks to me and my hands are full and I can't answer. I will, for all the long glorious life I look forward to experiencing, have them. Why? Because I'm normal.
Optimistic healing works best with a dose of reality, and that's not a bad one. I'm not happy all the time, things don't always work out, not everything is care bear in Marktown. I don't expect that from others. In honor of optimistic healing, though, I will: refuse to wallow; refuse to read bullshit "woe is me" posts on Facebook from people I know to have jobs, places to live, and not just something to eat, but a huge variety of things to eat. My message? Life can suck, so suck it up; not over share the grossness that occupies a goodly portion of my life but focus on the way everything looks beautiful to me when the vile is cleaned up and gone. I will say this: there is nothing sweeter than a clean dressing and a clear nose.
The lesson of 2014, to me, was how much gold the dross is hiding. With a mere wiping of the eyes it becomes obvious that healing stands behind trauma, that a pervasive beauty is only poorly scrimmed by a gauzy ugliness in events. We live, we fall we get up. There's nothing new here, just a 54 year old dumbass going back to the kindergarten of life to figure out what survival is, what it will look like, how it will be.
And, as in real Kindergarten, survival has naps, all kinds of them, schnoodles (though a particular one), charleses who drive one to chemo and commiserates when needed, friends who insist I lunch with them so we can spend an hour or so cracking on one another, gossiping a bit, laughing a lot, and the wide open spaces of tomorrow, looking to be filled with joy, no bullshit, and a healthy dose of me.
Welcome 2015! I've been waiting for you.
Wednesday, December 17, 2014
Concatenating 2014: Astrology! Mindfulness! Lourdes!
What did I learn this year? or what didn't I learn?
I learned once again that I'm like the Love Canal for toxicity. If you have a chemo drug you need to dump in a guy who won't automatically glow, I'm your man. I've now been at this chemo stuff for over a year and a half and the only problem I've really had is that I once had trouble breathing during a taxol infusion--allergic reaction, I think. They just slowed the drip down and I got over it. Case closed.
My newer drug, 5FU (5 times Fuck You), has a possible side effect of something called hand and foot syndrome, where the skin cracks, and it can cause nails to become brittle--and both of these have now happened to me--in fact, typing is somewhat painful because I have fissures in my nail beds that are annoying and prone to infection. My nails are breaking up into pieces, somewhat abstracted by my habit of picking at them. I was a nail biter all my life, and when nail biting was taken away from me, I turned into a nail picker. I am, after all, not a new Mark but a McGuyvered version of the old model.
As I look at what I wrote about this year, I learned about the importance of other people in my life, how much deflection they provide me, how much love, the type of support they give that I cannot replicate. I learned how fortunate I am in the people I have around me, closely, or distantly orbiting. I have an interesting family that finds me interesting. I learned that I'm not really all that needy, but I need them, and I need the friends I have, and I need to hear their voices occasionally, on Facebook, as I read what they write in the voice I know of them. In person, as this past weekend when Jerry the Doll came calling, and spent time glorying in the idea that we are survivors.
I have, too, a bro-crush, a admiration so absolute that it remains a pillar of my existence--my old India Studies boss, Dr. Sumit Ganguly. I know so few people that I believe are geniuses--actually, do I know any others? Some very close...perhaps just Katy Borner at the Cyberinfrastructure for Network Science Center....anyway, Dr. G., as I call him, is my completely nonsexual brain crush. Recently, he's had a serious health challenge of his own and I've been trying to get him to talk to me about it--and he defers on the basis that I'm dealing with enough of my own. Arrgh! I cannot get him to understand that focusing outside myself is what I most want to do. I can't change his diagnosis or prognosis, but I can offer a lot of perspective on dealing with the healthcare system, on how the mind twists to escape the illness the body presents it, how to stay yourself when nobody thinks you can do that anymore.
I recently saw a segment on 60 minutes with Anderson Cooper exploring mindfulness and going on a retreat and walking around deliberately and chewing in silence and what not. That's mindfulness? You see, to me, mindfulness is what I'm trying to do with Dr. G., what I encourage myself to do with all my friends--mindfulness is living the experience of others, understanding through their perspective, melding that with your own to learn of a new way of viewing, thinking, feeling. Mindfulness is not how I am to me, it's how you are. I suppose I learned in 2014 that all my life I've tried to do this--and that's one of the best parts of me that I'm glad is still here. It's not empathy I'm speaking of, but a real effort to retrain one's thinking to enculturate another perspective, and to then feel and think from that new geography. I understand what Anderson's mindfulness was trying to achieve, but to me, it's just stealth narcissism--and don't we have enough of self fascination?
I'm perfectly ok with myself, and these days I only occasionally have moments of depression over how much cancer has changed me--yeah, it changed me, boo hoo. I'm not cute anymore, if I was cute before--my body is a map of big surgery and subsequent adjustments. My skin is dry and thin, my ass (what's left of it) hangs and isn't pert. But damn if I'm not sexy beautiful in my own head--a man who works for his good, fights, thinks, advocates, loves and occasionally stoops to charm.
I learned this year to have a different sort of respect for belief and what power that represents. The parishioners of Charles' Catholic parish have been unfailingly lovely about my illness--they pray for me, they send me blessed oil and blessed water--and I drink the water and apply the oil, because I've learned that just as I have agency, so too do they, Belief, for them, is an act of sincerity, not attrition, not a lowest common denominator way to hate others, but a level playing field upon which to love, and even to heal. I've had my problems with Christianity, and with some of the cultists and Dominionists, I still do--but I've come to see the fact that others believe as a positive force.
I thought of this the other night when I watched a PBS show about wounded soliders congregating yearly at Lourdes, men and women with horrific injuries and even worse memories, seeking not a cure but a healing, not absolution, but a cessation of the worst after effects of bombs and suicide bombers and IEDs. It was moving, it was a profound statement to me of the mind's power to effectuate a better life, and belief's powers to move the unmovable. So if I am less overtly anti-Christian, consider the lessons of 2014 well learned.
I stopped reading horoscopes for the most part in 2014--I used to read them fairly regularly, and while I didn't think they predicted my life, I did sometimes hope they did when they seemed more interesting than my existence merited. I do still receive a weekly horoscope and newsletter from Rob Brezsny's Free Will Astrology which I enjoy because his writing is so intelligent and entertaining. But this week's offering also was one that spoke directly to me:
I learned once again that I'm like the Love Canal for toxicity. If you have a chemo drug you need to dump in a guy who won't automatically glow, I'm your man. I've now been at this chemo stuff for over a year and a half and the only problem I've really had is that I once had trouble breathing during a taxol infusion--allergic reaction, I think. They just slowed the drip down and I got over it. Case closed.
My newer drug, 5FU (5 times Fuck You), has a possible side effect of something called hand and foot syndrome, where the skin cracks, and it can cause nails to become brittle--and both of these have now happened to me--in fact, typing is somewhat painful because I have fissures in my nail beds that are annoying and prone to infection. My nails are breaking up into pieces, somewhat abstracted by my habit of picking at them. I was a nail biter all my life, and when nail biting was taken away from me, I turned into a nail picker. I am, after all, not a new Mark but a McGuyvered version of the old model.
As I look at what I wrote about this year, I learned about the importance of other people in my life, how much deflection they provide me, how much love, the type of support they give that I cannot replicate. I learned how fortunate I am in the people I have around me, closely, or distantly orbiting. I have an interesting family that finds me interesting. I learned that I'm not really all that needy, but I need them, and I need the friends I have, and I need to hear their voices occasionally, on Facebook, as I read what they write in the voice I know of them. In person, as this past weekend when Jerry the Doll came calling, and spent time glorying in the idea that we are survivors.
I have, too, a bro-crush, a admiration so absolute that it remains a pillar of my existence--my old India Studies boss, Dr. Sumit Ganguly. I know so few people that I believe are geniuses--actually, do I know any others? Some very close...perhaps just Katy Borner at the Cyberinfrastructure for Network Science Center....anyway, Dr. G., as I call him, is my completely nonsexual brain crush. Recently, he's had a serious health challenge of his own and I've been trying to get him to talk to me about it--and he defers on the basis that I'm dealing with enough of my own. Arrgh! I cannot get him to understand that focusing outside myself is what I most want to do. I can't change his diagnosis or prognosis, but I can offer a lot of perspective on dealing with the healthcare system, on how the mind twists to escape the illness the body presents it, how to stay yourself when nobody thinks you can do that anymore.
I recently saw a segment on 60 minutes with Anderson Cooper exploring mindfulness and going on a retreat and walking around deliberately and chewing in silence and what not. That's mindfulness? You see, to me, mindfulness is what I'm trying to do with Dr. G., what I encourage myself to do with all my friends--mindfulness is living the experience of others, understanding through their perspective, melding that with your own to learn of a new way of viewing, thinking, feeling. Mindfulness is not how I am to me, it's how you are. I suppose I learned in 2014 that all my life I've tried to do this--and that's one of the best parts of me that I'm glad is still here. It's not empathy I'm speaking of, but a real effort to retrain one's thinking to enculturate another perspective, and to then feel and think from that new geography. I understand what Anderson's mindfulness was trying to achieve, but to me, it's just stealth narcissism--and don't we have enough of self fascination?
I'm perfectly ok with myself, and these days I only occasionally have moments of depression over how much cancer has changed me--yeah, it changed me, boo hoo. I'm not cute anymore, if I was cute before--my body is a map of big surgery and subsequent adjustments. My skin is dry and thin, my ass (what's left of it) hangs and isn't pert. But damn if I'm not sexy beautiful in my own head--a man who works for his good, fights, thinks, advocates, loves and occasionally stoops to charm.
I learned this year to have a different sort of respect for belief and what power that represents. The parishioners of Charles' Catholic parish have been unfailingly lovely about my illness--they pray for me, they send me blessed oil and blessed water--and I drink the water and apply the oil, because I've learned that just as I have agency, so too do they, Belief, for them, is an act of sincerity, not attrition, not a lowest common denominator way to hate others, but a level playing field upon which to love, and even to heal. I've had my problems with Christianity, and with some of the cultists and Dominionists, I still do--but I've come to see the fact that others believe as a positive force.
I thought of this the other night when I watched a PBS show about wounded soliders congregating yearly at Lourdes, men and women with horrific injuries and even worse memories, seeking not a cure but a healing, not absolution, but a cessation of the worst after effects of bombs and suicide bombers and IEDs. It was moving, it was a profound statement to me of the mind's power to effectuate a better life, and belief's powers to move the unmovable. So if I am less overtly anti-Christian, consider the lessons of 2014 well learned.
I stopped reading horoscopes for the most part in 2014--I used to read them fairly regularly, and while I didn't think they predicted my life, I did sometimes hope they did when they seemed more interesting than my existence merited. I do still receive a weekly horoscope and newsletter from Rob Brezsny's Free Will Astrology which I enjoy because his writing is so intelligent and entertaining. But this week's offering also was one that spoke directly to me:
SCORPIO (Oct. 23-Nov. 21): You may already know what I'm about to tell
you. It's a core principle at the root of your Scorpio heritage. But I want
to focus your attention on it. In the coming months, you'll be wise to
keep it at the forefront of your conscious awareness. Here it is, courtesy
of philosopher Friedrich Nietzsche: "You have it in your power to invest
everything you have lived through -- your experiments, false starts,
errors, delusions, passions, your love and your hope -- into your goal, with
nothing left over."
That was 2104 to me--a time when I committed everything and thought always of my goal--to live, to
live gloriously and fully, mindfully, with belief. In 2014, I started telling people, more people
at least, the truth I see, and how I see it, and why I see it that way. I used to fear that my
perspective was too off-putting, now I see how harmless I've been all along. I was rarely
out to hurt anyone, I rarely felt threatened, and 2014 was the year I decided I could be me,
because I don't have enough time to be anyone else.
I don't particularly need mindfulness or Jesus or Buddha, Mohammad or whoever, and I
don't need to know when Pluto is transiting an impatient Mars. I need to know when Charles is
coming home, so I can open the garage door. I need to know that Rally gets that Daddy loves him.
I need the people in my life. I need to do what I can to be as normal as possible without
fooling myself that I'm normal. Of course I'm not. I fought every day in 2014, I'm going to fight
my way through 2015. You see, I have a goal, and I'm saving nothing to reach it. Nothing left over.
Or, as the Goddess Tori would say: Pretty good year.
Friday, December 12, 2014
How Much It Loves You Back
The house has a scent wreath of meat, wine and garlic wafting from a slow cooker. It's being joined by the setting of brownies topped with walnuts coming to life in the oven (Mark Bittman, "How to Cook Everything"-we don't Duncan Hines in this household). This all in anticipation of my old friend Jerry, who is coming down for the weekend from Fort Wayne.
We are the oldest of friends, having met on the streets of Fort Wayne's tiny "gay block" downtown in 1977. I was 16, and not supposed to be there, Jerry was 15 with a Camaro that I coveted in chocolate brown with tan leather bucket seats--or was that pleather? It could have been, we are talking mid-Seventies. We have know each other since then, with breaks in communication--37 years! I know he likes pot roast and brownies, as does Charles (as does any Hoosier). And that, I can do.
We haven't seen each other since before the cancer diagnosis and the surgeries and the changes. I'm nervous. I've written to him in my emails and begged him to be sure and not forget that I look different, that inside is still the creamy filling of Mark, but outside is a different story. I likely shouldn't worry. I'm not a circus freak, but if you knew me in 2012 the 2015 version is decidedly less streamlined. There's the bandages, the face mask, the coughing, the dry skin, the chemo jew hair, the weird patches of facial hair I ignore until they absolutely must be shaved (note to radiation: you took away 80% of the hair that grew on my face and I'm good with that, in fact, bravo. Life is much easier that way--but leaving the mustache and two patches on my upper cheeks? Such a bitch move.)
Because it's the holiday season, I've been randomly writing emails to people to say hello and tell them I miss them, which I do. I've grown fond of thinking of my past, and not in a "ein tag war hochzeit" sort of way (apologies, Sally Bowles, but that's real German Expressionism!)--rather, simply that it was better than I knew it to be at the time. This amuses me a great deal. I always felt apart from what I was doing in life, at least most of the time--either too sophisticated or too degenerate to care, too savoir to faire, too bitch to deal. Turns out to have been untrue--I live these moments now because I lived them then. I just didn't allow myself to think I was...
The reason that cancer pisses me off is that it struck me suddenly in the middle of the point of my life where I finally felt I was real, adult, present--at the point where I loved my job despite its shortcomings, and I loved the people I worked with in Washington, DC on the grant that funded it, and I loved my boss and my coworkers. I had a plethora of great friends I could call upon for help or fun or just for shits. I would have told you my ass was too fat but I liked myself, I liked my body, I enjoyed my own sense of humor. Then, boom, clap, all gone.
I thought of that moment, particularly, when the curtain came down as I received an answer to one of my random acts of emailing--from a friend I particularly admire whose mother has received a cancer diagnosis and isn't considered a good candidate for chemo. This is like finding a knife in your side that can't be removed for fear of losing the kidneys and eviscerating the spleen.
I will admit I don't know what to say about that cancer, about this event...knowing that sorry is a small word thrown upon a big wall of shit. That I don't pray for myself so I'll not be praying for her, except in my non-traditional way. I'll send my best most positive thoughts into a universe I know to be grim and hostile but creamy, like me, on the inside. I'll hope they make it through.
To anyone starting this voyage, I can only say it's time to pull your big girl panties up and gird your loins. The one step forward, two steps back thing is an apt description, walking through mud is another. But do this:
1. Let your doctor know you're smart and you want to be engaged:
Ok, I know this is going to sound awful, but bear with me. On virtually every doctor's visit I've attended, the waiting room is full of people talking about that there sammich at Mickey Dee's made their guts hurt when they crapped. This is the gum smacking, trash talking, shit food eating heart of
'Murica. They've spent a life never exercising, never walking, never attempting a rational diet, hating brussel sprouts and eating lots and lots of Freedom Fries. They'd rather die than figure out a way to do anything but pop pain medication and act like nothing was really happening to them.
This is what your doctor is seeing more frequently than you--a person who has read, studied, been curious, learned how to satiate that curiosity, acted, thought, theorized. You have rational responses, you know that cancer wasn't just a product of A or B, but like geometry, often enough, there's a C in there, too. You want them to take you seriously? Speak like a grown up. Express like a scholar. Shut up and listen, listen, listen. Often enough, the question you want to ask is contained in the answer to something else. Just shut up. You're back to undergrad, and Cancer U is not for the snotty self-assured A-holes who used to talk about ciphers in literature and New Criticism's application to the rise of Confessionalism in American Poetry circa 1955 onward. Just shut the fuck up. Try it, it's really refreshing. Not to have the smart ass remark, the bon mot, at the ready, but to honestly let your doctor know you WANT to learn. They will quickly see that you mean business and the entire way they treat you will change--for the better;
2. Advocate, and cuss:
I have never said "fuck that" to so many doctors with so much good effect--because that's me, that's how Mark used to talk when he could talk. I don't know why I love vulgarity so much, but I do. Sue me.
I advocate for myself by allowing my doctors to know who I actually am behind all this cancer--and that Mark is still very much alive and very much wants to stay that way. I advocate for myself by a process of concatenation of our last visit, our last theoretical discussion, our last possible future plan. For example--in my last visit with Dr. Dayton, my Oncologist, he was discussing the chest wall tumor we've been fighting. He believes that chemo will not completely destroy it this time, and we'll have to excise some of it surgically, and follow that with a skin graft, because this tumor occurs in a patch of my chest that was so damaged by radiation that the skin doesn't heal well, and abraids and forms open sores easily. (I know, so sexy to think about that, right?) Last time I simply asked where the skin graft would come from, we talked about the importance of gaining weight to support the skin harvest, to maintain my relative health. I've been thinking of this everyday, asking myself what I want to know of this plan. I want to know how long the surgery will take, whom he will suggest should perform it (and then of course look up their credentials), where, what recovery time in the hospital would be necessary, what Plan B is if the skin graft doesn't take, who does the follow up care, and is he still my point guard on Team Mark, varsity Cancer Fighters.
I advocate for myself by establishing that I've paid attention and done what is asked of me, and made it my own routine. As Dr. Wilkins told Terri the nurse at Wound Care last week: I'm just the doctor, he's running the show.
3. I allow myself to feel
Finally, and most simply, I allow myself to feel. I cry a lot. Sweet videos tear me up, baby animals affect me, people amaze me, beauty astounds me. I absorb as much of the universe as will tear through me in a day, every day.
Words that have moved me: "fixed stars govern a life" (Plath); "Live or die, but don't poison everything" (said to Anne Sexton); "I'm Don Juan's Reckless Daughter, I came out two days on your tail/Those two bald headed days in November/Before the first snowflakes sail." (Joni "Goddess" Mitchell); "No voice divine the storm allayed/No light propitious shone/As snatched from all effectual aid/We perished, each alone;/But I beneath a rougher sea and whelmed in deeper gulfs than he." (William Cowper). There are so many of these...
To be in gratitude of the bounty of incredible things requires an innocence we are often bullied out of--a simpleness in the face of grace that we are told is semi-retarded. Hardly. That has it fully backward and half assed to boot. Yet how often we are talked out of our goodness and how frequently our mercy is never spent upon ourselves...
To my friend's mother: Good luck and welcome. Please decide you'll board the S.S. Survivor. Please set a goal--mine is live to 70. I like to think big--yours can be feel better by May, or just be of good cheer. One's goal within Cancerville need not be lofty, it just feels necessary to have an end point to the work.
Spend the time to find out why you're not a good fit for chemo, and what sort of chemo that is--there are all kinds of formulas and mixes and perhaps your oncologist is overlooking an older therapy that is not currently vogue that might work for you. For me, they pulled me in a very old cancer fighter that helped me for many months--in fact, it was part of bringing me back from concentration camp Mark to almost pink faced Mark. My oncologist at the time dug deep to think outside the reigning paradigm and it worked. Make sure your oncologist knows you believe in his/her ability to do the same, and to be a bit daring if you will be too.
My oncologist knows my goal, and he thinks I can do it. That's because I have told him I want to, and he has seen that I have a certain power to getting what I want. Mark A. Price, the honey badger of cancer fighting. Your oncologist should know yours, and why you want it, and who you are, and why you are worth assisting, rising, to meet that goal you've set. You must convince them you are ready to survive because survival is not just something that happens--it is something that you make happen.
It is Sisyphean to survive, because it is done and redone every single day. There is no let up. Once you commit to the merry go round, that bitch goes round and you do not get off. You believe in yourself or you slide off. You act like an adult or your grip loosens. You love what you have because you hate to have lost what you lost.
Now, look around you. It's beautiful, the yellow light of a sun, the diffused light through a cloud. The composition of color as you look out the window--here, early winter, it's yellows and browns and grays with some small weeds in my old shade garden tossing red in a leaf or two. The maple tree has gradients of grey and black, streaks of moldy green and rust. How could you leave this? How could you not want to learn to love this and see, finally, as an adult, as a survivor, as someone special as you are, how much it loves you back?
We are the oldest of friends, having met on the streets of Fort Wayne's tiny "gay block" downtown in 1977. I was 16, and not supposed to be there, Jerry was 15 with a Camaro that I coveted in chocolate brown with tan leather bucket seats--or was that pleather? It could have been, we are talking mid-Seventies. We have know each other since then, with breaks in communication--37 years! I know he likes pot roast and brownies, as does Charles (as does any Hoosier). And that, I can do.
We haven't seen each other since before the cancer diagnosis and the surgeries and the changes. I'm nervous. I've written to him in my emails and begged him to be sure and not forget that I look different, that inside is still the creamy filling of Mark, but outside is a different story. I likely shouldn't worry. I'm not a circus freak, but if you knew me in 2012 the 2015 version is decidedly less streamlined. There's the bandages, the face mask, the coughing, the dry skin, the chemo jew hair, the weird patches of facial hair I ignore until they absolutely must be shaved (note to radiation: you took away 80% of the hair that grew on my face and I'm good with that, in fact, bravo. Life is much easier that way--but leaving the mustache and two patches on my upper cheeks? Such a bitch move.)
Because it's the holiday season, I've been randomly writing emails to people to say hello and tell them I miss them, which I do. I've grown fond of thinking of my past, and not in a "ein tag war hochzeit" sort of way (apologies, Sally Bowles, but that's real German Expressionism!)--rather, simply that it was better than I knew it to be at the time. This amuses me a great deal. I always felt apart from what I was doing in life, at least most of the time--either too sophisticated or too degenerate to care, too savoir to faire, too bitch to deal. Turns out to have been untrue--I live these moments now because I lived them then. I just didn't allow myself to think I was...
The reason that cancer pisses me off is that it struck me suddenly in the middle of the point of my life where I finally felt I was real, adult, present--at the point where I loved my job despite its shortcomings, and I loved the people I worked with in Washington, DC on the grant that funded it, and I loved my boss and my coworkers. I had a plethora of great friends I could call upon for help or fun or just for shits. I would have told you my ass was too fat but I liked myself, I liked my body, I enjoyed my own sense of humor. Then, boom, clap, all gone.
I thought of that moment, particularly, when the curtain came down as I received an answer to one of my random acts of emailing--from a friend I particularly admire whose mother has received a cancer diagnosis and isn't considered a good candidate for chemo. This is like finding a knife in your side that can't be removed for fear of losing the kidneys and eviscerating the spleen.
I will admit I don't know what to say about that cancer, about this event...knowing that sorry is a small word thrown upon a big wall of shit. That I don't pray for myself so I'll not be praying for her, except in my non-traditional way. I'll send my best most positive thoughts into a universe I know to be grim and hostile but creamy, like me, on the inside. I'll hope they make it through.
To anyone starting this voyage, I can only say it's time to pull your big girl panties up and gird your loins. The one step forward, two steps back thing is an apt description, walking through mud is another. But do this:
1. Let your doctor know you're smart and you want to be engaged:
Ok, I know this is going to sound awful, but bear with me. On virtually every doctor's visit I've attended, the waiting room is full of people talking about that there sammich at Mickey Dee's made their guts hurt when they crapped. This is the gum smacking, trash talking, shit food eating heart of
'Murica. They've spent a life never exercising, never walking, never attempting a rational diet, hating brussel sprouts and eating lots and lots of Freedom Fries. They'd rather die than figure out a way to do anything but pop pain medication and act like nothing was really happening to them.
This is what your doctor is seeing more frequently than you--a person who has read, studied, been curious, learned how to satiate that curiosity, acted, thought, theorized. You have rational responses, you know that cancer wasn't just a product of A or B, but like geometry, often enough, there's a C in there, too. You want them to take you seriously? Speak like a grown up. Express like a scholar. Shut up and listen, listen, listen. Often enough, the question you want to ask is contained in the answer to something else. Just shut up. You're back to undergrad, and Cancer U is not for the snotty self-assured A-holes who used to talk about ciphers in literature and New Criticism's application to the rise of Confessionalism in American Poetry circa 1955 onward. Just shut the fuck up. Try it, it's really refreshing. Not to have the smart ass remark, the bon mot, at the ready, but to honestly let your doctor know you WANT to learn. They will quickly see that you mean business and the entire way they treat you will change--for the better;
2. Advocate, and cuss:
I have never said "fuck that" to so many doctors with so much good effect--because that's me, that's how Mark used to talk when he could talk. I don't know why I love vulgarity so much, but I do. Sue me.
I advocate for myself by allowing my doctors to know who I actually am behind all this cancer--and that Mark is still very much alive and very much wants to stay that way. I advocate for myself by a process of concatenation of our last visit, our last theoretical discussion, our last possible future plan. For example--in my last visit with Dr. Dayton, my Oncologist, he was discussing the chest wall tumor we've been fighting. He believes that chemo will not completely destroy it this time, and we'll have to excise some of it surgically, and follow that with a skin graft, because this tumor occurs in a patch of my chest that was so damaged by radiation that the skin doesn't heal well, and abraids and forms open sores easily. (I know, so sexy to think about that, right?) Last time I simply asked where the skin graft would come from, we talked about the importance of gaining weight to support the skin harvest, to maintain my relative health. I've been thinking of this everyday, asking myself what I want to know of this plan. I want to know how long the surgery will take, whom he will suggest should perform it (and then of course look up their credentials), where, what recovery time in the hospital would be necessary, what Plan B is if the skin graft doesn't take, who does the follow up care, and is he still my point guard on Team Mark, varsity Cancer Fighters.
I advocate for myself by establishing that I've paid attention and done what is asked of me, and made it my own routine. As Dr. Wilkins told Terri the nurse at Wound Care last week: I'm just the doctor, he's running the show.
3. I allow myself to feel
Finally, and most simply, I allow myself to feel. I cry a lot. Sweet videos tear me up, baby animals affect me, people amaze me, beauty astounds me. I absorb as much of the universe as will tear through me in a day, every day.
Words that have moved me: "fixed stars govern a life" (Plath); "Live or die, but don't poison everything" (said to Anne Sexton); "I'm Don Juan's Reckless Daughter, I came out two days on your tail/Those two bald headed days in November/Before the first snowflakes sail." (Joni "Goddess" Mitchell); "No voice divine the storm allayed/No light propitious shone/As snatched from all effectual aid/We perished, each alone;/But I beneath a rougher sea and whelmed in deeper gulfs than he." (William Cowper). There are so many of these...
To be in gratitude of the bounty of incredible things requires an innocence we are often bullied out of--a simpleness in the face of grace that we are told is semi-retarded. Hardly. That has it fully backward and half assed to boot. Yet how often we are talked out of our goodness and how frequently our mercy is never spent upon ourselves...
To my friend's mother: Good luck and welcome. Please decide you'll board the S.S. Survivor. Please set a goal--mine is live to 70. I like to think big--yours can be feel better by May, or just be of good cheer. One's goal within Cancerville need not be lofty, it just feels necessary to have an end point to the work.
Spend the time to find out why you're not a good fit for chemo, and what sort of chemo that is--there are all kinds of formulas and mixes and perhaps your oncologist is overlooking an older therapy that is not currently vogue that might work for you. For me, they pulled me in a very old cancer fighter that helped me for many months--in fact, it was part of bringing me back from concentration camp Mark to almost pink faced Mark. My oncologist at the time dug deep to think outside the reigning paradigm and it worked. Make sure your oncologist knows you believe in his/her ability to do the same, and to be a bit daring if you will be too.
My oncologist knows my goal, and he thinks I can do it. That's because I have told him I want to, and he has seen that I have a certain power to getting what I want. Mark A. Price, the honey badger of cancer fighting. Your oncologist should know yours, and why you want it, and who you are, and why you are worth assisting, rising, to meet that goal you've set. You must convince them you are ready to survive because survival is not just something that happens--it is something that you make happen.
It is Sisyphean to survive, because it is done and redone every single day. There is no let up. Once you commit to the merry go round, that bitch goes round and you do not get off. You believe in yourself or you slide off. You act like an adult or your grip loosens. You love what you have because you hate to have lost what you lost.
Now, look around you. It's beautiful, the yellow light of a sun, the diffused light through a cloud. The composition of color as you look out the window--here, early winter, it's yellows and browns and grays with some small weeds in my old shade garden tossing red in a leaf or two. The maple tree has gradients of grey and black, streaks of moldy green and rust. How could you leave this? How could you not want to learn to love this and see, finally, as an adult, as a survivor, as someone special as you are, how much it loves you back?
Sunday, December 7, 2014
Who are you, anyway?
It's Sunday and I've been up since 4am, victim to misplaced fluids which refuse to leave my throat, and refuse to move, and won't respond to my attempts to dislodge it. I can breathe, but it's in the way, and I can feel it, and that irritates me. I made a pineapple upside down cake at 5:30am because my nephew and his partner, girl partner, woman, his "sex", are coming over in the late morning and his birthday is quickly approaching on the 12th.
I have had to twist his arm to allow me to make him a lunch, which I had hoped would be a dinner, which I believe he will enjoy if he allows himself to do so. He will, he informs me, forgoe the joy of White Castle for the privilege of the strip steak I have in soy dijon marinade in the refrigerator. For the honor of allowing me to make him some roasted potatoes, roasted brussel sprouts with walnuts and a small bit of fresh corn cut off the cob.
Jesus Christ, I'm like my mother.
This is the way she was--a bit snarky, everything an event horizon. My poor little nephew is probably ready to sneak out of Bloomington and drive back home, and I'm gluing his ass to a seat at my janky dining room table (it really is janky), and listen to me pontificate for an hour as politely as he can before he escapes. His girlfriend (I truly don't think that's quite the word, but I don't know what to call her) doesn't like me and has made that obvious on several occasions of being semi-rude to me; I care little. If my nephew likes banging her, it's not my business. We can be frenemies over all, as long as the boy is happy.
I am not quite as bad as my mother about cleaning the house this time around. I'm learning. Usually when someone is coming over for virtually any reason, I'm dusting the baseboards and freaking out about pubes. Today, not so much--Breathing is not normal, snot is not flowing as it should, I'm tired. Fuck it. If there's dust on the television and that traumatizes you, I pity the life you are forced to lead.
Thank you cancer, I'm not just like my mother.
But she too with her cancer had to step down a bit from her tornado of housefrauing. Once my father had died and she no longer felt compelled to wipe down the toilet with antibacterial after every visit he made in there, she looked about herself and understood she wasn't made to keep it up. It couldn't all run like Mussolini's trains. She wasn't young, she had cancer, and it was killing her, and she knew it.
I am like my mother when her practicality switched on. I'm tired, and I'll be tired. I have lower event horizon reactions. I wait longer to do things. I do them in smaller batches. I avoid up and down, up and down, and hope for long periods of interaction, not action.
Yet, I am like my father, which is a damnable thing. As established here earlier, the man just didn't like me, and never did. In my early years, he took delight in telling me what a disappointment I was; in later years, he simply ignored me as best he could. I in turn couldn't stand being in the same room with him, feared him, disliked him, and only put that aside for the last ten years or so of his life for the sake of my own sanity, to explore whether we had anything in common at all.
It turns out we have plenty in common, probably the biggest problem between us. My father never liked himself all that well, and he certainly didn't like encountering himself in me. He didn't like my smartass mouth, he didn't like my verbalness, he certainly was never in favor of my fagness, though he kept that to himself. But we both had stubborness. and intelligence and perseverance and intuitiveness and a belief that whatever we felt about ourselves personally, we were worthy of respect, and dignity, and by god if you didn't give it to us, we'd knife you as fast as look at you.
Those traits, benighted as they often are, are useful in fighting cancer, in fighting insurance companies, in demanding to be treated as a person of skill and agency and intelligence. You may not know but once you are marked for death in the system, a lot of people simply write you off--you become the ghost who watches as your spouse is consulted, the shadow who breathes while others sign forms, you are not the king anymore. Once in such a position you have to fight your way back, prove yourself, yell, declare your agency. You have to be rational but firm, you have to question your doctors and direct your treatment and demand that you be given the full range of options and information.
Then it becomes easier, as my mother would have had it.
Apparently, my mother was very popular at her infusion center because of her good nature, and she certainly had one. She was not tempted to blame anyone for her condition or make their lives more difficult because of it, and I've consciously tried to pattern myself that way because I respected that about her so much. Like me, her sentence to chemo was life long from the point of diagnosis. It went on for years, she was quite tough. I have that from her, her utter resilience, my sister had it. We three cancer victims learned from one another like water cascading down a smart hill. I am the fortunate recipient.
Today, I'm trying as best I can to be Mark, but Barb is poking out of me when I look at the pineapple upside down cake and second guess me decision to not use those gross cherries on it (ugh, maraschinos, so Fifties). Jim is sticking me in the ribs and telling me I'm a failure because I can't get my nephew to dinner, so he must think I'm stupid. Hardly, I tell Jim, the boy has his own life. Calm down, Barb, I say to her as she stands fretting, looking at the cake tray. Mark is here, the coffee is ready when I need it to brew, the steaks are prepared, the potatoes are roasting.
My mother didn't like most of her daughters-in-law when she first met them. They were just never quite up to her snuff, not perhaps good enough for her two heterosexual sons. My dates or relationships she was invariably nice to, but they weren't permanent to her (or, mostly, to me). She had no expectations. My father sat smoking in the earlier years, on oxygen later, and said little, preferring to act as if what was on television was much more engrossing that I or we could ever be.
And, I am all of that, all of them, all of me. Waiting for Jason, waiting to chat, and feed and fuss, and even love, a bit. Unlike Barb I'm not lovey, and unlike Jim I'm not distant. I am Mark, I have cancer, I am surviving it every day a little bit, and I am all of us.
I have had to twist his arm to allow me to make him a lunch, which I had hoped would be a dinner, which I believe he will enjoy if he allows himself to do so. He will, he informs me, forgoe the joy of White Castle for the privilege of the strip steak I have in soy dijon marinade in the refrigerator. For the honor of allowing me to make him some roasted potatoes, roasted brussel sprouts with walnuts and a small bit of fresh corn cut off the cob.
Jesus Christ, I'm like my mother.
This is the way she was--a bit snarky, everything an event horizon. My poor little nephew is probably ready to sneak out of Bloomington and drive back home, and I'm gluing his ass to a seat at my janky dining room table (it really is janky), and listen to me pontificate for an hour as politely as he can before he escapes. His girlfriend (I truly don't think that's quite the word, but I don't know what to call her) doesn't like me and has made that obvious on several occasions of being semi-rude to me; I care little. If my nephew likes banging her, it's not my business. We can be frenemies over all, as long as the boy is happy.
I am not quite as bad as my mother about cleaning the house this time around. I'm learning. Usually when someone is coming over for virtually any reason, I'm dusting the baseboards and freaking out about pubes. Today, not so much--Breathing is not normal, snot is not flowing as it should, I'm tired. Fuck it. If there's dust on the television and that traumatizes you, I pity the life you are forced to lead.
Thank you cancer, I'm not just like my mother.
But she too with her cancer had to step down a bit from her tornado of housefrauing. Once my father had died and she no longer felt compelled to wipe down the toilet with antibacterial after every visit he made in there, she looked about herself and understood she wasn't made to keep it up. It couldn't all run like Mussolini's trains. She wasn't young, she had cancer, and it was killing her, and she knew it.
I am like my mother when her practicality switched on. I'm tired, and I'll be tired. I have lower event horizon reactions. I wait longer to do things. I do them in smaller batches. I avoid up and down, up and down, and hope for long periods of interaction, not action.
Yet, I am like my father, which is a damnable thing. As established here earlier, the man just didn't like me, and never did. In my early years, he took delight in telling me what a disappointment I was; in later years, he simply ignored me as best he could. I in turn couldn't stand being in the same room with him, feared him, disliked him, and only put that aside for the last ten years or so of his life for the sake of my own sanity, to explore whether we had anything in common at all.
It turns out we have plenty in common, probably the biggest problem between us. My father never liked himself all that well, and he certainly didn't like encountering himself in me. He didn't like my smartass mouth, he didn't like my verbalness, he certainly was never in favor of my fagness, though he kept that to himself. But we both had stubborness. and intelligence and perseverance and intuitiveness and a belief that whatever we felt about ourselves personally, we were worthy of respect, and dignity, and by god if you didn't give it to us, we'd knife you as fast as look at you.
Those traits, benighted as they often are, are useful in fighting cancer, in fighting insurance companies, in demanding to be treated as a person of skill and agency and intelligence. You may not know but once you are marked for death in the system, a lot of people simply write you off--you become the ghost who watches as your spouse is consulted, the shadow who breathes while others sign forms, you are not the king anymore. Once in such a position you have to fight your way back, prove yourself, yell, declare your agency. You have to be rational but firm, you have to question your doctors and direct your treatment and demand that you be given the full range of options and information.
Then it becomes easier, as my mother would have had it.
Apparently, my mother was very popular at her infusion center because of her good nature, and she certainly had one. She was not tempted to blame anyone for her condition or make their lives more difficult because of it, and I've consciously tried to pattern myself that way because I respected that about her so much. Like me, her sentence to chemo was life long from the point of diagnosis. It went on for years, she was quite tough. I have that from her, her utter resilience, my sister had it. We three cancer victims learned from one another like water cascading down a smart hill. I am the fortunate recipient.
Today, I'm trying as best I can to be Mark, but Barb is poking out of me when I look at the pineapple upside down cake and second guess me decision to not use those gross cherries on it (ugh, maraschinos, so Fifties). Jim is sticking me in the ribs and telling me I'm a failure because I can't get my nephew to dinner, so he must think I'm stupid. Hardly, I tell Jim, the boy has his own life. Calm down, Barb, I say to her as she stands fretting, looking at the cake tray. Mark is here, the coffee is ready when I need it to brew, the steaks are prepared, the potatoes are roasting.
My mother didn't like most of her daughters-in-law when she first met them. They were just never quite up to her snuff, not perhaps good enough for her two heterosexual sons. My dates or relationships she was invariably nice to, but they weren't permanent to her (or, mostly, to me). She had no expectations. My father sat smoking in the earlier years, on oxygen later, and said little, preferring to act as if what was on television was much more engrossing that I or we could ever be.
And, I am all of that, all of them, all of me. Waiting for Jason, waiting to chat, and feed and fuss, and even love, a bit. Unlike Barb I'm not lovey, and unlike Jim I'm not distant. I am Mark, I have cancer, I am surviving it every day a little bit, and I am all of us.
Wednesday, November 26, 2014
Thankful!
Of course I'm thankful to be alive and here, watching the dog watch Charles eat pizza. I'm thankful for the meta categories, friends, family, relative health. I spent the first part of this week fighting an errant bug that led me to sleep about 16 hours a day. Today, I spent the first part of the day at chemo as my nurses get a day off on my usual Friday--isn't that good? I figured my pals would have to work and I'd show up to oppress them on Friday but they get to be human and real, and I'm thankful for that.
In considering thankfulness, most of mine is rather specifically focused. So here's a partial list, and by far not exhaustive:
Bridget
I'm thnakful my niece decided to lose weight for herself. I'm happy she's grown up to like herself, everything else is either cake or static. She bangs out her makeup like a pro, and looks like a model. No mere boy is going to be good enough.
Amanda
My little niece has two adorable children and a husband I like to fuck with. I really couldn't ask for much more. Well, I would like to eat when I go to her house, but I do get to bitch about everything, which she encourages, because she is a bitch and I'm proud. In our family, we own it.
Kathy and Chano
My niece used to just be irritated by me, but we've both grown up. I enjoy her eye popping bitchiness and she enjoys mine. I like her husband, a sensitive intellectual traveler. Kathy was the first of my nieces and nephews, my sister Barb's first. She carries her mother well, and I miss her less when I'm around KJ.
Jim and Debbie
My oldest brother doesn't let me down. He took me to the drive-in in his cool Mustang in the Sixties, fed me potato soup when my mother couldn't make it home to fix dinner. He married a quiet woman named Debbie who turned out to have a wicked sense of humor and the biggest heart. I love them both because my life at every step has been better with them in it.
Jason, Jeremy, Jennifer
Jim and Debbie brought this tribe to life. They are foul mouthed, vulgar, loving, fabulous people. I couldn't enumerate the number of times they have amused the hell out of me. Like their parents, they've only made my life better . They continue to fascinate me, Jason with his beautiful daughter and his two sons, Jeremy in his first house, Jennifer who married my sweet Roller, a Debbie-level addition to the family, their boy Logan who is polite and sweet and 15-and I can't wait until he goes as wild as his uncle...
Dale
When my sister married Dale in 1966, I thought he was a tool. Well, however a six year old thinks an adult is a tool, I thought it. Growing up, Dale would say things like "practice makes perfect" that made me want to smack him, but as I grew more, I came to appreciate the qualities that drew my sister to him: steady, predictable, knowable. Further, I came to know the greatness of Dale's heart, and i am still amazed by it. We often say we don't know the heroes amongst us. I do. Dale is one of mine.
Charles
18 years after meeting a long haired, wire rimmed glasses wearing organ student at The Other Bar in Bloomington, there's still no one I'd rather bitch talk with, sit in front of the television and scream at commercials with, criticize grammar in the Times with, or have sit with me when I'm in chemo. I don't think everyone gets to meet the person with whom they have compatibility, empathy, and a great deal of love. I did.
Friends
I don't predict I'll like people, but I usually instantly know that I do. I knew it the first day of SLIS 505 when I sat next to Galadriel and Donna came in wearing a sweet dress and heels to class when the rest of looked like denim warmed over. I loved Karen in 503, who studied Farsi because she dug Iranian guys and was a mess who was a genius. I worked with Katie but that was because in her interview she was awesome and I just wanted to KNOW that woman. In my India Studies interview with Dr. G and Lil Jan, I wanted the job, but I wanted the people more--Dr. G because he's international level brilliant and Jan because she has international level love for others, and it shines through her, and you can see it and feel it.
Healh is wondrful, happiness is great, Without people, these people, and alot of others, I wouldn't have survived my first round of cancer. I had moments of intense doubt, intense grief, I felt intensely how much I'd lost and thought I didn't want to live without those things. But I thought of how much the people in my life would be disappointed that I went down like a bitch, without a fight. I thought of how I told them I was though--was I now going to be a liar?
Well, no. And I love you all, and I'm thankful for that.
In considering thankfulness, most of mine is rather specifically focused. So here's a partial list, and by far not exhaustive:
Bridget
I'm thnakful my niece decided to lose weight for herself. I'm happy she's grown up to like herself, everything else is either cake or static. She bangs out her makeup like a pro, and looks like a model. No mere boy is going to be good enough.
Amanda
My little niece has two adorable children and a husband I like to fuck with. I really couldn't ask for much more. Well, I would like to eat when I go to her house, but I do get to bitch about everything, which she encourages, because she is a bitch and I'm proud. In our family, we own it.
Kathy and Chano
My niece used to just be irritated by me, but we've both grown up. I enjoy her eye popping bitchiness and she enjoys mine. I like her husband, a sensitive intellectual traveler. Kathy was the first of my nieces and nephews, my sister Barb's first. She carries her mother well, and I miss her less when I'm around KJ.
Jim and Debbie
My oldest brother doesn't let me down. He took me to the drive-in in his cool Mustang in the Sixties, fed me potato soup when my mother couldn't make it home to fix dinner. He married a quiet woman named Debbie who turned out to have a wicked sense of humor and the biggest heart. I love them both because my life at every step has been better with them in it.
Jason, Jeremy, Jennifer
Jim and Debbie brought this tribe to life. They are foul mouthed, vulgar, loving, fabulous people. I couldn't enumerate the number of times they have amused the hell out of me. Like their parents, they've only made my life better . They continue to fascinate me, Jason with his beautiful daughter and his two sons, Jeremy in his first house, Jennifer who married my sweet Roller, a Debbie-level addition to the family, their boy Logan who is polite and sweet and 15-and I can't wait until he goes as wild as his uncle...
Dale
When my sister married Dale in 1966, I thought he was a tool. Well, however a six year old thinks an adult is a tool, I thought it. Growing up, Dale would say things like "practice makes perfect" that made me want to smack him, but as I grew more, I came to appreciate the qualities that drew my sister to him: steady, predictable, knowable. Further, I came to know the greatness of Dale's heart, and i am still amazed by it. We often say we don't know the heroes amongst us. I do. Dale is one of mine.
Charles
18 years after meeting a long haired, wire rimmed glasses wearing organ student at The Other Bar in Bloomington, there's still no one I'd rather bitch talk with, sit in front of the television and scream at commercials with, criticize grammar in the Times with, or have sit with me when I'm in chemo. I don't think everyone gets to meet the person with whom they have compatibility, empathy, and a great deal of love. I did.
Friends
I don't predict I'll like people, but I usually instantly know that I do. I knew it the first day of SLIS 505 when I sat next to Galadriel and Donna came in wearing a sweet dress and heels to class when the rest of looked like denim warmed over. I loved Karen in 503, who studied Farsi because she dug Iranian guys and was a mess who was a genius. I worked with Katie but that was because in her interview she was awesome and I just wanted to KNOW that woman. In my India Studies interview with Dr. G and Lil Jan, I wanted the job, but I wanted the people more--Dr. G because he's international level brilliant and Jan because she has international level love for others, and it shines through her, and you can see it and feel it.
Healh is wondrful, happiness is great, Without people, these people, and alot of others, I wouldn't have survived my first round of cancer. I had moments of intense doubt, intense grief, I felt intensely how much I'd lost and thought I didn't want to live without those things. But I thought of how much the people in my life would be disappointed that I went down like a bitch, without a fight. I thought of how I told them I was though--was I now going to be a liar?
Well, no. And I love you all, and I'm thankful for that.
Wednesday, November 19, 2014
54!
Richard tells me I've been quiet. This might be true. Lately I've been dealing with weird sleep patterns due to effluvia, coughing due to effluvia, effluvia due to effluvia. I seem to be a teeming mess of snottiness that has nowhere to go and only me to bother.
I thought this would improve after we had a few good freezes and the moldiness and dust of Autumn was behind us, and perhaps it is better. My nose runs less, that's true. But my recent effluviamania seems to simply be a new wrinkle in what proves to be a dynamic, not static, system. We learn to our disadvantage, kids, that cancer isn't a one-shot, one-trick, one-act fuck up: it just morphs itself to new problems, new ways that effluvia gathers.
I've been staying at home a lot, and I've missed a bunch of lectures I would have liked going to, but it's rude to cough as loudly as I cough in lectures, sometimes the echo of throat gunk sounds like a bullet shot through my trach tube. I can't predict it, I can't control it. At least not yet.
If that all sounds bad, it's not really so terrible. I like being at home, and Rally likes it too. We enjoy flagrant, long afternoon naps, light late morning power naps, heavy late afternoon fuck-this-shit naps, and any other nap we can think of to have. Effluvia, if I may again, typically wakes me up a few times during the night, hauling me to the bathroom to check the neck hole, the tube, to clean up or out, change the tissue in my mouth, sop out the face mask. Interrupted sleep is not happy sleep, and thus, the naps.
This year, I gave myself an early birthday present of an electric blanket. This thing is awesome--ten settings, ten hour run span, soft, pretty, and warm. This was the very best thing I could have done for myself, considering it's already in the teens here, and the snow has already arrived. I like winter, and last night when Charles and I made a late run to the grocery store, the air was fifteen degrees, still, and wonderful. That's when I like Winter best--without the wind. The snow? love it. The cold? enjoy it. The wind? fuck it.
I tell people that I'm made of chemicals, and without blood I have no hopes of being warm. I'm only half joking. I truly don't warm up the way other people do, and once I've caught a chill, you might as well get the hot water bottle because I'll stay that way until I'm warmed. I have my older electric throw in the living room for watching TV because I get cold sitting there doing nothing, I get cold when I drink cold water, my whole body taking in the temperature of what runs down my tube. When I pound hot coffee in the summer, I sweat; when I dump a cold bottle of water in the tube I freeze.
But listen--the worst I've been dealing with is an ongoing battle to get rid of snot that is annoying and cloying--but it's not killing me. Occasionally, especially lately, my face has hurt--and that's a real problem. Can you imagine your face hurting? and when I say hurting, I mean it feels like someone has smacked the shit out of me, everywhere, and then pinched me for good measure. When I was a civilian, I'm sure I never once thought of my face hurting, and I don't remember that it ever did.
Now, gravity pulls on what skin has no bone to support it, the system changes, my upper teeth are pushed together, sores form in my mouth, a film coats the mouth that has to be chipped off, nothing is quite where it was yesterday. My mouth, which hangs a bit, now hangs more askew, so that I truly do look more and more like a Scream mask. I could do Munch, and be famous for the uncanny resemblance.
But listen--that sucks hard but I take some Lortab Elixir and it's fixed for a few hours. If it's terrible, a bit of morphine sulfate and bitch just goes to sleep, and dreams of fried chicken.
As I'm writing, my 54th birthday is tomorrow. I'm going to celebrate it with a lunch with friends--the chili is concatenating in the kitchen right now, the potatoes for the potato salad are about to be boiled and marinated. I'm happy.
Happy is a construct, true, but it feels like a place. This place, now, here. This is happiness. The dog, the shitty old kitchen that I love, the shitty old ranch house that is one year younger than me--I liked this place the minute I walked into it that fateful day the realtor showed it to us. It was the first house we saw, and we went and saw others, but none of them had the least interest to me. This place, where it is in Bloomington, the yard, the neighborhood, it was exactly what I hoped for, and it has never let me down.
Happiness is a construct, of course, but it's also a choice. I choose it. On a wall of options this is what I most want--to understand what is happening to me, how it effects me, and still know that I'm here, I'm ok, that it will never touch what is truly me--I choose that.
I have decided, as I might have mentioned before, that I will at least make it to 70. After 70, all bets are off--by then my man tits should be somewhere around my waist and my dick might have shriveled to the silhouette of a peanut, but by hook or by crook, I want to see me there. I think I'll be a jolly old fellow--maybe I'll be talking again by then, eating again, celebrating my birthday with a fat slice of cake, one that would choke a pit bull, but no problem for me.
I hope, 16 birthdays from now, that I will have mastered happiness. I'm working at it diligently, I have hope of my achievement. To laugh the great laugh I'll have earned remembering that they told me people like me live 22 months on average after diagnosis. Oh, you silly doctors.
I thought this would improve after we had a few good freezes and the moldiness and dust of Autumn was behind us, and perhaps it is better. My nose runs less, that's true. But my recent effluviamania seems to simply be a new wrinkle in what proves to be a dynamic, not static, system. We learn to our disadvantage, kids, that cancer isn't a one-shot, one-trick, one-act fuck up: it just morphs itself to new problems, new ways that effluvia gathers.
I've been staying at home a lot, and I've missed a bunch of lectures I would have liked going to, but it's rude to cough as loudly as I cough in lectures, sometimes the echo of throat gunk sounds like a bullet shot through my trach tube. I can't predict it, I can't control it. At least not yet.
If that all sounds bad, it's not really so terrible. I like being at home, and Rally likes it too. We enjoy flagrant, long afternoon naps, light late morning power naps, heavy late afternoon fuck-this-shit naps, and any other nap we can think of to have. Effluvia, if I may again, typically wakes me up a few times during the night, hauling me to the bathroom to check the neck hole, the tube, to clean up or out, change the tissue in my mouth, sop out the face mask. Interrupted sleep is not happy sleep, and thus, the naps.
This year, I gave myself an early birthday present of an electric blanket. This thing is awesome--ten settings, ten hour run span, soft, pretty, and warm. This was the very best thing I could have done for myself, considering it's already in the teens here, and the snow has already arrived. I like winter, and last night when Charles and I made a late run to the grocery store, the air was fifteen degrees, still, and wonderful. That's when I like Winter best--without the wind. The snow? love it. The cold? enjoy it. The wind? fuck it.
I tell people that I'm made of chemicals, and without blood I have no hopes of being warm. I'm only half joking. I truly don't warm up the way other people do, and once I've caught a chill, you might as well get the hot water bottle because I'll stay that way until I'm warmed. I have my older electric throw in the living room for watching TV because I get cold sitting there doing nothing, I get cold when I drink cold water, my whole body taking in the temperature of what runs down my tube. When I pound hot coffee in the summer, I sweat; when I dump a cold bottle of water in the tube I freeze.
But listen--the worst I've been dealing with is an ongoing battle to get rid of snot that is annoying and cloying--but it's not killing me. Occasionally, especially lately, my face has hurt--and that's a real problem. Can you imagine your face hurting? and when I say hurting, I mean it feels like someone has smacked the shit out of me, everywhere, and then pinched me for good measure. When I was a civilian, I'm sure I never once thought of my face hurting, and I don't remember that it ever did.
Now, gravity pulls on what skin has no bone to support it, the system changes, my upper teeth are pushed together, sores form in my mouth, a film coats the mouth that has to be chipped off, nothing is quite where it was yesterday. My mouth, which hangs a bit, now hangs more askew, so that I truly do look more and more like a Scream mask. I could do Munch, and be famous for the uncanny resemblance.
But listen--that sucks hard but I take some Lortab Elixir and it's fixed for a few hours. If it's terrible, a bit of morphine sulfate and bitch just goes to sleep, and dreams of fried chicken.
As I'm writing, my 54th birthday is tomorrow. I'm going to celebrate it with a lunch with friends--the chili is concatenating in the kitchen right now, the potatoes for the potato salad are about to be boiled and marinated. I'm happy.
Happy is a construct, true, but it feels like a place. This place, now, here. This is happiness. The dog, the shitty old kitchen that I love, the shitty old ranch house that is one year younger than me--I liked this place the minute I walked into it that fateful day the realtor showed it to us. It was the first house we saw, and we went and saw others, but none of them had the least interest to me. This place, where it is in Bloomington, the yard, the neighborhood, it was exactly what I hoped for, and it has never let me down.
Happiness is a construct, of course, but it's also a choice. I choose it. On a wall of options this is what I most want--to understand what is happening to me, how it effects me, and still know that I'm here, I'm ok, that it will never touch what is truly me--I choose that.
I have decided, as I might have mentioned before, that I will at least make it to 70. After 70, all bets are off--by then my man tits should be somewhere around my waist and my dick might have shriveled to the silhouette of a peanut, but by hook or by crook, I want to see me there. I think I'll be a jolly old fellow--maybe I'll be talking again by then, eating again, celebrating my birthday with a fat slice of cake, one that would choke a pit bull, but no problem for me.
I hope, 16 birthdays from now, that I will have mastered happiness. I'm working at it diligently, I have hope of my achievement. To laugh the great laugh I'll have earned remembering that they told me people like me live 22 months on average after diagnosis. Oh, you silly doctors.
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