Today the sky is very crystalline blue, as Winter skies can be without clouds and with lots of cheerful sun. It's 16 degrees on its way to a high of 19, there is no wind--in short, this is perfect weather, this is what I love and used to live for, this is the weather that framed my park and woods walks with Hector and Hildy who both, like me, loved winter.
I find it incredibly beautiful--I like the color palette of bark, I like the stripped bare trees when their lattice can be seen. I enjoy the snap in the air, I love the brilliance of white snow against the foot of a dark grey elm, a beigey oak, the black and lichen of a maple. Today is such a day. This is why I love the Midwest.
Friday are chemo days and every third chemo Friday, I also see Dr. Dayton. These visits are usually just me recounting what has happened or not happened since our last visit. They are forums where I toss questions out and propose scenarios. We talk about sex, we talk about bowel movements, we discuss the New York Times (today's article on fighting cancer through the targeting and suppression of mutations was a lively topic), and we spend a few seconds congratulating ourselves on how well we've done working together against bad odds.
We've been focused upon the upcoming surgery, of course, and the results of my recent MRI are very encouraging, very winter blue sky. Aside from the mass we hope to excise and two small satellite masses attached, we are looking at a Mark who may just keep ticking, fighting those micro cancers that roost and grow, like Rilke, dann und wann ein weisse Elephant....(just don't ask me if that adjectival ending is correct--my German is way too far in the past. Donna, I'm thinking it should be eine weisse....)
March 3rd will mark the 2nd anniverary of my 18 hour initial surgery in 2013--a day that will live in, what, infamy? No, like the unexpected beauty of a copse of trees on a golf course in winter, it's a day whose effects still resonate. I am grateful that I could be saved, overall, the surgeons did a good job. It's not their fault that my tongue was thoroughly colonized by cancer and had to go, not their fault that in a mouthful of cancer they couldn't scoop every last cell, and some of those minions escaped and went on a permanent joy ride through my lymph system.
Like watching snow fall, I'm never properly awed by the fact that cancer invaded my lungs and got its ass kicked before it dug in, until I breathe, until it falls, until the grey light behind the white flakes is resonant with the sun it's obscuring. Like everyone, I complain I don't receive miracles while they quietly go about their business around me.
I like Dr. Dayton so much because I believe he tells me the truth, or at least the truth as he sees it. It's a lesson all doctors should learn. I have cancer, I didn't catch retardation, so talk to me rationally, like an adult, tell me what's really going on. Today we added a new nurse to the infusion center rotation--Cally--who is being trained upon the art of dealing with me.
Honestly, I'm a bit livelier than the average person who shares Friday morning chemo with me. And that's because I'm happy to be there: I've received such benefit from chemo, suffered comparatively little in the way of side effects, and (in a recent conversation with Dr. D) have found that if cancer comes roaring back, their are still things we haven't tried that we will try. So I have relief, and confidence, and I can sit back and enjoy the fact that 7,000 dollars worth of treatment is dripping into me.
There will be more snow on Sunday here, but finally, a bit of warmer temperatures. Without the wind, the teens are delightful weather, but these days, hard on me--that sort of air and a trach tube for breathing don't go together well. Just getting the mail out of the box yesterday was a trial, but there was wind, pushing knives of dry down my tube and shocking me into believing I couldn't breathe. Uh, no, Mark does not play that, not no more.
Ultimately what I like most about my intermittent dates with Dr. Dayton is the fact that I feel better, and more optimistic, after each one. And, to no one's surprise, I'm the one who does most of the talking--or typing, in my case--so I suppose I'm getting a talk therapy benefit along with a health overview. But the optimism I feel is buttressed by the results, the concrete, real achievements of our team this year.
I came back to Indiana last January looking like a sad ass frozen red bud hoping not to die. These days, I'm at least a Tulip Poplar, looking forward to my next bloom.
Friday, February 27, 2015
Wednesday, February 18, 2015
Hello, Russia
I occasionally look at the stats of this blog to see what's going on. One of my favorites is "audience", which identifies where people are viewing this work.
I've been a bit popular, relatively speaking, in Ukraine, I have one consistent reader in Germany (Hi, Donna) and in Denmark (Hi, Stefan), and often France, Spain, and other European countries show up. Lately, though, I have had a lot of page hits from Russia--in fact, lately, the most page hits have come from there.
This of course might be people trying to back end my personal information through the blog, but I prefer to think it's someone who is dealing with, or dealing with someone with cancer. Looking for ideas, thoughts, a way to express the long moan of oh fuck that comes with this disease.
Ideally, this blog is for me, my family, my friends, to keep up on what's relevant in my treatment, to understand what's going on in my brain, to see that I'm still as I was, irascible and unlikely to let a piece of shit like cancer ruin my dancing shoes. Secondly, though, I hope someone reads it who is suffering and decides they don't have to suffer. I hope it sticks around the internet after I'm gone as an introduction to Mark Priceism, the fuck this religion of the future.
I do not know my future, at all. I ponder it sometimes, wondering about 60, about 70 about going beyond and still having all the problems I have now. Do I have the strength to live 20 years without eating or speaking? Will science solve at least one of those problems? (please let it be eating--I don't need to talk but I desperately want a hamburger.) I have tried to think optimistically but sometimes when I wake up coughing at 4am because the gunk is gathering in my tube, I wonder if I won't just drown in a river of snot. Rather John Waterish of me, I think...
One reason I like to write this is that writing releases a lot of the toxins I store up on a daily basis. Most of my worries are placed into perspective when I force myself to think outwards--and the conditions I worry about are usually put into place this way too. When I write, I think of people who have it worse that I do, and there are certainly people who do. They help me understand that whatever strength I think I have is pretty minimal to what it takes to be them. I dislike scales of suffering, generally, I don't believe in them, but I do know there's an echelon of fiber it takes each of us to create.
So, in Russia, what does this all sound like? They have a modern medical system, whether funded or not, they have, I'll wager, fairly similar technologies to deal with fast, aggressive oral cancers. Is what I'm writing being wrung through a towel of Orthodoxy? (If so, I don't know how the fucks are translating). I'm thinking of a flat in Moscow, somewhat updated, somewhat not, a holdover from those vast Soviet apartment blocks. A person wrapped in blankets like I am often enough, in a face mask, wondering how and when normal will ever reappear once it has been surgically excised. Their winter is wilder, longer, and colder.
In "Twilight of the Eastern Gods", Ismail Kadare writes in a semi-autobiographical way of a student in the Gorky Institute in Moscow in the Fifties. A time of Soviet Nationalism and Nikita-ism, a place already starting to peel, buildings sitting in grim situations under an endless sky. It evokes what I thought of Russia growing up--a sad place we were told, where you had to work months just to buy a pair of shoes! Did you ever see those charts in school? I think you'd have to be my age or older, to remember those Cold War artifacts--how Russians were far more likely to be alcoholics, how Russians had to shift their poorly-made cars into neutral and glide downhill to save gas, how no one owned anything there, how long one waited to get an apartment. Sounds a lot like America, 2015, to me...at least the America that I see on the rare occasions that I'm out.
I have given up thoughts of travel, much as I have given up thoughts of meandering around town, In the Winter, leaving the house means doctors or grocery store; in Summer, it means walking the schnoodle. It no longer means adventure, or seeking, or discovery. I read an article about how Milan is so cheap to visit, the airfares they quoted were shockingly good, the pictures of the arcades of Milan, the cathedral, the food, the people--all of that was vintage porn to me: it would have turned Mark on three years ago, now it just makes him a bit sad. No, there's no way I can sit in an aircraft crowded and uncomfortable for 9 hours. It simply won't happen. I'm no longer a pretzel.
I'll never go to Russia, and that's a shame. I'm a big fan of Russian history, and culture, though I dislike their government. I've always wanted to see St. Petersburg particularly and watch the shades of Peter stride over boardwalks in the swampy muck and see Catherine glide about in her Baroque gowns festooned with doubled-headed eagles. It would be fascinating to see where the massacre of 1905 took place, in that Winter Palace courtyard--and to walk the backstreets where Left Social Revolutionaries fought Bolsheviks, and White Russians silently packed up and headed west to join the insurrection. It would be incredible to experience the day of the Romanov's execution, as news came in from Ekaterinburg on wire. But, not to be...
Many things aren't to be, but many things are--exchanging your past dreams for new dreams often feels too compromised, but frankly, it's not so bad. It's rather good to let go of unrealistic expectations and engender new thinking based upon the possible, the doable, the now. My next dream is a successful surgery on my chest wall tumor, where I'm sitting in the hospital having fun with the nurses and enjoying a warm room and a comfortable bed and good drugs. It's not Milan by a long shot but it's really possible.
I dream that prosthetics will be approved for me that will reshape what's left of my mouth and allow me not to wear face masks or drool. Seems possible, seems like a small desire, given that I could ask to win the lottery.
I hope to find that someone in Russia has read this and decided to live, damn it, live, in spite of the shit looking mouth, the muscle soreness in the tempo-mandibular joints, the teeth getting pushed together, the amount of body run off running through a useless orifice. Fuck that stuff, fuck those conditions, you are alive.
I dream that it's 2085 and in researching the quaintness of the internet in the early part of the century, someone finds this and decides I was right, interesting, a decent person. Someone who will remember me when they don't even know me, who understands why this is all a buzzkill and how much I tried to make it not.
I've been a bit popular, relatively speaking, in Ukraine, I have one consistent reader in Germany (Hi, Donna) and in Denmark (Hi, Stefan), and often France, Spain, and other European countries show up. Lately, though, I have had a lot of page hits from Russia--in fact, lately, the most page hits have come from there.
This of course might be people trying to back end my personal information through the blog, but I prefer to think it's someone who is dealing with, or dealing with someone with cancer. Looking for ideas, thoughts, a way to express the long moan of oh fuck that comes with this disease.
Ideally, this blog is for me, my family, my friends, to keep up on what's relevant in my treatment, to understand what's going on in my brain, to see that I'm still as I was, irascible and unlikely to let a piece of shit like cancer ruin my dancing shoes. Secondly, though, I hope someone reads it who is suffering and decides they don't have to suffer. I hope it sticks around the internet after I'm gone as an introduction to Mark Priceism, the fuck this religion of the future.
I do not know my future, at all. I ponder it sometimes, wondering about 60, about 70 about going beyond and still having all the problems I have now. Do I have the strength to live 20 years without eating or speaking? Will science solve at least one of those problems? (please let it be eating--I don't need to talk but I desperately want a hamburger.) I have tried to think optimistically but sometimes when I wake up coughing at 4am because the gunk is gathering in my tube, I wonder if I won't just drown in a river of snot. Rather John Waterish of me, I think...
One reason I like to write this is that writing releases a lot of the toxins I store up on a daily basis. Most of my worries are placed into perspective when I force myself to think outwards--and the conditions I worry about are usually put into place this way too. When I write, I think of people who have it worse that I do, and there are certainly people who do. They help me understand that whatever strength I think I have is pretty minimal to what it takes to be them. I dislike scales of suffering, generally, I don't believe in them, but I do know there's an echelon of fiber it takes each of us to create.
So, in Russia, what does this all sound like? They have a modern medical system, whether funded or not, they have, I'll wager, fairly similar technologies to deal with fast, aggressive oral cancers. Is what I'm writing being wrung through a towel of Orthodoxy? (If so, I don't know how the fucks are translating). I'm thinking of a flat in Moscow, somewhat updated, somewhat not, a holdover from those vast Soviet apartment blocks. A person wrapped in blankets like I am often enough, in a face mask, wondering how and when normal will ever reappear once it has been surgically excised. Their winter is wilder, longer, and colder.
In "Twilight of the Eastern Gods", Ismail Kadare writes in a semi-autobiographical way of a student in the Gorky Institute in Moscow in the Fifties. A time of Soviet Nationalism and Nikita-ism, a place already starting to peel, buildings sitting in grim situations under an endless sky. It evokes what I thought of Russia growing up--a sad place we were told, where you had to work months just to buy a pair of shoes! Did you ever see those charts in school? I think you'd have to be my age or older, to remember those Cold War artifacts--how Russians were far more likely to be alcoholics, how Russians had to shift their poorly-made cars into neutral and glide downhill to save gas, how no one owned anything there, how long one waited to get an apartment. Sounds a lot like America, 2015, to me...at least the America that I see on the rare occasions that I'm out.
I have given up thoughts of travel, much as I have given up thoughts of meandering around town, In the Winter, leaving the house means doctors or grocery store; in Summer, it means walking the schnoodle. It no longer means adventure, or seeking, or discovery. I read an article about how Milan is so cheap to visit, the airfares they quoted were shockingly good, the pictures of the arcades of Milan, the cathedral, the food, the people--all of that was vintage porn to me: it would have turned Mark on three years ago, now it just makes him a bit sad. No, there's no way I can sit in an aircraft crowded and uncomfortable for 9 hours. It simply won't happen. I'm no longer a pretzel.
I'll never go to Russia, and that's a shame. I'm a big fan of Russian history, and culture, though I dislike their government. I've always wanted to see St. Petersburg particularly and watch the shades of Peter stride over boardwalks in the swampy muck and see Catherine glide about in her Baroque gowns festooned with doubled-headed eagles. It would be fascinating to see where the massacre of 1905 took place, in that Winter Palace courtyard--and to walk the backstreets where Left Social Revolutionaries fought Bolsheviks, and White Russians silently packed up and headed west to join the insurrection. It would be incredible to experience the day of the Romanov's execution, as news came in from Ekaterinburg on wire. But, not to be...
Many things aren't to be, but many things are--exchanging your past dreams for new dreams often feels too compromised, but frankly, it's not so bad. It's rather good to let go of unrealistic expectations and engender new thinking based upon the possible, the doable, the now. My next dream is a successful surgery on my chest wall tumor, where I'm sitting in the hospital having fun with the nurses and enjoying a warm room and a comfortable bed and good drugs. It's not Milan by a long shot but it's really possible.
I dream that prosthetics will be approved for me that will reshape what's left of my mouth and allow me not to wear face masks or drool. Seems possible, seems like a small desire, given that I could ask to win the lottery.
I hope to find that someone in Russia has read this and decided to live, damn it, live, in spite of the shit looking mouth, the muscle soreness in the tempo-mandibular joints, the teeth getting pushed together, the amount of body run off running through a useless orifice. Fuck that stuff, fuck those conditions, you are alive.
I dream that it's 2085 and in researching the quaintness of the internet in the early part of the century, someone finds this and decides I was right, interesting, a decent person. Someone who will remember me when they don't even know me, who understands why this is all a buzzkill and how much I tried to make it not.
Thursday, February 5, 2015
Something Like an Accident
I couldn't sleep last night which happens sometimes to all of us. For me, it was the effect of a long, lazy, multi-hour nap with Rally. Warm under my electric blanket, dead to the world, it didn't occur to my body that it might not be the best idea to sleep 6 hours during the day.
I blame the anesthetic from surgery, which did seem especially efficient. I woozed home and woozed into bed and stayed woozy through yesterday, I believe. Now that's the shit!
During my non-sleeping early morning, I found myself in my bathroom, the half-bath which now looks like a medical supply closet, where I hack and change bandages, fuss and bleed sometimes (it's much easier to clean up in there). I had to change the sopping tissue in my mouth and I caught sight of myself in the mirror--and then I noticed my mouth has sloped further down, and is somewhere now where my chin used to be, and listed heavily to the left.
I don't, honestly, look at myself very often. I find it's better to practice something that's not denial, but isn't full on unvarnished truth--I think of it as avoidance. I know my face is contorted, I know that cancer has changed me, I know I don't look like MAP anymore. I see myself enough to understand all of those things, to see how I've degraded past normal human looks into something quite different, yet not entirely alien. But my mouth, seeing it there, hanging, useless, I have to admit was a bit of a shock.
I've resolutely tried to think of myself as normal, and what I'm going through as a normal situation, and how it effects my body as completely normal. This tether has often enough kept me from spinning into depression, or giving up my fight in the face of what I'm facing. Avoidance has allowed me to see cancer as small and myself as typically large, Gulliver v. Lilliput, with a strategic foreknowledge of what can happen when big meets small.
I think, always, that I will win. And I will continue to think that, even in the face of the mouth that looks more like scar, the face that is puffy with fluids, the skin flaking off despite all the creams and water. I have to do that whether I like it or not--I'm just made that way. Trying to be a narcissistic baby about this is just not in the cards.
I suppose the shock, the truth, the vision at 2am, is deeply bound up in other situations where I am not the actor I used to be: at the end of this month, Charles will go to the Music Library Association meeting in Denver, and I won't. I used to love to go with him. I know several music librarians who are now scattered around the country and it's fun to see them. We have a tradition, which I started, of having an Ethiopian dinner together, a night given to fun and the fabulous food of Ethiopia and being together. I miss all of that, me and my mouth.
I am still not regular at attending the lectures that interest me, though fairly I missed one recently because I misread the schedule. I sit amongst the normal listening to erudite commentary knowing I am no longer normal. I wear a face mask, I sop myself with tissue, I move slowly.
I went back, last night, to the beginning of this blog and read about the first 20 entries, some of them were well done, some not, some just emblematic of the fear I felt and the grind I entered into it when cancer came knocking. I realized I'm not that guy now, that I could not write this blog the way I did then, the tone is completely different. Then, there was some misguided hopes of a return to normalcy, and now this writing is defensive and self-protecting when it does not self-flagellate.
That is normal--normal progression as one lives with a killer. You don't sleep or buy knives if your roommate has a homicidal streak; you don't tempt them by watching Law and Order.
What I'm left with from this event is a sense of the reality of the horizons I gaze at--a place to go to through zigs and zags for me, a place that is gotten to through doctor's offices and procedures and plans. I am no longer Mark A. Price who walks his own path--I'm what's left of Mark A. Price who does what he is told in order to survive. I am the version of MAP who schemes and tries to figure out how I can get someone to make a prosthetic for me that will replace this hole that used to love to mash peanut butter and now just is...there. I'm the guy in the mirror, shocked.
Some accidents are happy, though this wasn't one of them, it's lingering after-effects may yet prove good. I must always come face to face with myself, it's unavoidable, and the next time I do so the surprise will be lighter. I may even force myself to look more often, into my heart of darkness, to alleviate its power and light it's corners. I might, as my old boss in Brooklyn always said, light a candle instead of cursing the darkness.
What is certain is that I will be here. No matter how far south I find my mouth next time, or how contorted it seems, I'll be straight up about it. I will not hide, I will not freak, I will not run. In the list of problems I have, this one is fixable. I am shocked to realize that can still happen.
I blame the anesthetic from surgery, which did seem especially efficient. I woozed home and woozed into bed and stayed woozy through yesterday, I believe. Now that's the shit!
During my non-sleeping early morning, I found myself in my bathroom, the half-bath which now looks like a medical supply closet, where I hack and change bandages, fuss and bleed sometimes (it's much easier to clean up in there). I had to change the sopping tissue in my mouth and I caught sight of myself in the mirror--and then I noticed my mouth has sloped further down, and is somewhere now where my chin used to be, and listed heavily to the left.
I don't, honestly, look at myself very often. I find it's better to practice something that's not denial, but isn't full on unvarnished truth--I think of it as avoidance. I know my face is contorted, I know that cancer has changed me, I know I don't look like MAP anymore. I see myself enough to understand all of those things, to see how I've degraded past normal human looks into something quite different, yet not entirely alien. But my mouth, seeing it there, hanging, useless, I have to admit was a bit of a shock.
I've resolutely tried to think of myself as normal, and what I'm going through as a normal situation, and how it effects my body as completely normal. This tether has often enough kept me from spinning into depression, or giving up my fight in the face of what I'm facing. Avoidance has allowed me to see cancer as small and myself as typically large, Gulliver v. Lilliput, with a strategic foreknowledge of what can happen when big meets small.
I think, always, that I will win. And I will continue to think that, even in the face of the mouth that looks more like scar, the face that is puffy with fluids, the skin flaking off despite all the creams and water. I have to do that whether I like it or not--I'm just made that way. Trying to be a narcissistic baby about this is just not in the cards.
I suppose the shock, the truth, the vision at 2am, is deeply bound up in other situations where I am not the actor I used to be: at the end of this month, Charles will go to the Music Library Association meeting in Denver, and I won't. I used to love to go with him. I know several music librarians who are now scattered around the country and it's fun to see them. We have a tradition, which I started, of having an Ethiopian dinner together, a night given to fun and the fabulous food of Ethiopia and being together. I miss all of that, me and my mouth.
I am still not regular at attending the lectures that interest me, though fairly I missed one recently because I misread the schedule. I sit amongst the normal listening to erudite commentary knowing I am no longer normal. I wear a face mask, I sop myself with tissue, I move slowly.
I went back, last night, to the beginning of this blog and read about the first 20 entries, some of them were well done, some not, some just emblematic of the fear I felt and the grind I entered into it when cancer came knocking. I realized I'm not that guy now, that I could not write this blog the way I did then, the tone is completely different. Then, there was some misguided hopes of a return to normalcy, and now this writing is defensive and self-protecting when it does not self-flagellate.
That is normal--normal progression as one lives with a killer. You don't sleep or buy knives if your roommate has a homicidal streak; you don't tempt them by watching Law and Order.
What I'm left with from this event is a sense of the reality of the horizons I gaze at--a place to go to through zigs and zags for me, a place that is gotten to through doctor's offices and procedures and plans. I am no longer Mark A. Price who walks his own path--I'm what's left of Mark A. Price who does what he is told in order to survive. I am the version of MAP who schemes and tries to figure out how I can get someone to make a prosthetic for me that will replace this hole that used to love to mash peanut butter and now just is...there. I'm the guy in the mirror, shocked.
Some accidents are happy, though this wasn't one of them, it's lingering after-effects may yet prove good. I must always come face to face with myself, it's unavoidable, and the next time I do so the surprise will be lighter. I may even force myself to look more often, into my heart of darkness, to alleviate its power and light it's corners. I might, as my old boss in Brooklyn always said, light a candle instead of cursing the darkness.
What is certain is that I will be here. No matter how far south I find my mouth next time, or how contorted it seems, I'll be straight up about it. I will not hide, I will not freak, I will not run. In the list of problems I have, this one is fixable. I am shocked to realize that can still happen.
Wednesday, January 28, 2015
Bleed Like Me
--"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.
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.
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?
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