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.
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