I'm now about two weeks into what I figured would be a month of recovery, post surgery. In some ways it's going really well, and in others, the picture is more mixed. I now have a home health nurse that comes everyday to change the dressing on my surgical site, and attend to an open area where the graft failed to take. Of course, there had to be a new hole, after all, it's me we're speaking of here.
My stay in Bloomington Hospital of two days was alleviated by a great nurse named Nancy who was smart and engaging. It wasn't so bad. I had my own room, a big bathroom, no view, but more channels on cable than I get at home, so I watched House Hunters until I could no longer stand: "oh, it's so small", and "I don't like that wall color", and "but where are you going to put your clothes" (in a closet the size of a house in Mexico, of course).
What surprises me is how old I feel, how this surgery, this time, really knocked me back on my ass, physically. It will go this way, now. I'm not the guy I was in 2013 when surgery was like a whatever on my way out of Cancerland. I know more, a lot more, and I'm about 1/2 the size of that fellow. So I shuffle around the house in slippers and a robe, sweats sometimes, usually no shirt under the zip up sweater I got from my good friend Polly Prissypants on my last birthday.
I've been on percoset for pain control, but pain has been happily very limited. I use it more for the excrutiating sensitivity I feel when the home care nurse is cleaning some of my surgical site, where the nerve endings are raw, occasionally exposed, and not very happy about it. The percs, as you might imagine, put me to sleep, and what where naps are now more like day sleep. I'm living a semi-Dracula life, but I've mostly been able to sleep at night, too. I sleep so much of late that my blood pressure is tacking lower, which feeds into the sleep cycle.
So, I'm taking some measures to prevent falling into an accidental coma from my love of Big Z. A bit more coffee to raise my blood pressure, a small project each day to complete to keep me from being completely useless. Reading (between Venetian history and a sweeping survey of the Plantegenet kings and queens of England, and upcoming, Chris Bayly's book on the birth of the modern world, thanks to a recommendation from Michael Dodson, the very kind and competent Director of India Studies at IUB).
I am older, and I am older than my age, and this has happened so gradually that it didn't occur to me until I faced it wounded, tired, and needing to heal. So I find my strategies have to change to reflect this reality: I have to work in smaller units; I need to rehabilitate slower, more patiently; my goal posts must be closer together.
Tomorrow, I go back to chemo one week earlier than I expected--it's a good thing socially. This is where I get my biggest kicks of the week, usually. Messing with the nurses, running the joint, playing Salt-n-Pepa videos on the Ipad as they push the 5FU into me--it doesn't sound like much I'm sure but it truly is a place I feel safe, and confident, a place where I'm accepted with my quirks that draw no discernible judgement. More importantly, it's a place where we all have one goal, to save me. I hope you never have to find out how important such a place is to have in your life.
Lately, the mail has been bothering me because every iteration brings a new message from the insurance company. They've managed to request information on virtually every thing I've had done to me this year. They've contended, tried to reject, pushed, pulled and popped every objection they could find to just paying the damn bill. News flash, Anthem BC/BS: I have stage 4 terminal cancer. I will never be cancer-free. My cancer has not progressed, it's simply persisted--so please stop trying to reject paying for the chemo that has allowed me to achieve that balance over a highly aggressive killer strain, ok? It would do wonders for my overall health if you would just shut the fuck up and pay--I mean, come on--doesn't the CEO make a heft multi-million dollar salary with flagrantly enormous stock options? Please don't try to poor mouth me to an early grave. Trust me, you won't win.
Too, I'm now eligible for Medicare which takes effect in August. So, I'm getting all those mailings about signing up, choosing a presciption plan which I believe will be like getting plowed dry, no kiss afterwards. I want to tell them, thanks, but let's wait to do this when I feel more competent, and less overwhelmed, but the grind of bureaucracy never fully meets the reality of individualism. I will say this--they are being incredibly efficient about it, so it's best I think if I take my own advice, STFU and motor on through the process.
I have met reality, I think, and I'm likely better for it overall. I've had some dark thoughts about this recovery because my expectations of myself are not tempered by any parameter of Mark with Cancer--I'm still Mark who Aspires, not Mark who is OLD AND TIRED! I'm still the guy who wants so much to know Turkish better, to finally not have to look up declensions of French nouns, who wants to flesh out my ancient German from early undergrad, who wants to know the modern world.
In my mind, I'm mowing the grass and gardening, and laughing and talking and the dogwood tree in the backyard is beautiful as I'm doing all of that. Rally is running away and I'm chasing him full speed, and when I put a leash on him, we go to Cascades Park and ramble around the stands of trees for an hour or so, up and down the steep ridge. Oddly, that vision doesn't depress me at all, as I sit in a very different reality; it gladdens every part of me. That I had that life, at one point, and enjoyed the hell out of it, makes moving into a new phase more exciting, more interesting, more provocative. I wonder how I will accommodate this new Mark, how he will figure out the method to a full life going forward always, with cancer, like a marriage that works but no one knows quite how.
Thursday, April 30, 2015
Monday, April 20, 2015
A Brief Message 'round Midnight.
I surprise myself again. Today I was down to two Percocet from the allowed six. I'm not having pain so much as scrapes and chronic aches.
I've been sleeping a lot but dreaming of what? I couldn't tell you. My head is alive in an alternate universe at the moment. If you see me driving a car, get out of the way. I've been spending the days in my bed, which at the moment is charming and warm. I know I'll chafe against the bars soon enough; for now I just want to heal.
The day Charles brought me back from the hospital was glorious--80, light everywhere. Even the ruins of last year's garden looked good. Rally was sweet, he could see that I was hurt and he kept--and keeps--both company and watch. He treads me carefully.
I have a drain, a huge amount of gauze and pads soaking up the afterglow of surgery. I don't know when it will all fall out or be satisfied that it has drained and wasted me enough.
I was touched, very much so, by all the well wishes from so many healthy faces on Facebook. A simple recognition beats a complex social game every time. And simplicity is my new theme.
Today I saw the plastic surgeon for follow up, which meant tedious dressing changes, but he ended up 95% happy--5% witnessing a hole develop at the top of the graft where the muscle pulled away. It's to be monitored and cared for for the great ladies of Wound Care. I have confidence.
That high percentage of satisfaction too means that I exceeded expectations yet again! And he called me tough, which was a nice compliment.
Anyway, I thought a brief synopsis was in order and a bit of bragging and a big thank you for the real fuel that keeps me going.
I've been sleeping a lot but dreaming of what? I couldn't tell you. My head is alive in an alternate universe at the moment. If you see me driving a car, get out of the way. I've been spending the days in my bed, which at the moment is charming and warm. I know I'll chafe against the bars soon enough; for now I just want to heal.
The day Charles brought me back from the hospital was glorious--80, light everywhere. Even the ruins of last year's garden looked good. Rally was sweet, he could see that I was hurt and he kept--and keeps--both company and watch. He treads me carefully.
I have a drain, a huge amount of gauze and pads soaking up the afterglow of surgery. I don't know when it will all fall out or be satisfied that it has drained and wasted me enough.
I was touched, very much so, by all the well wishes from so many healthy faces on Facebook. A simple recognition beats a complex social game every time. And simplicity is my new theme.
Today I saw the plastic surgeon for follow up, which meant tedious dressing changes, but he ended up 95% happy--5% witnessing a hole develop at the top of the graft where the muscle pulled away. It's to be monitored and cared for for the great ladies of Wound Care. I have confidence.
That high percentage of satisfaction too means that I exceeded expectations yet again! And he called me tough, which was a nice compliment.
Anyway, I thought a brief synopsis was in order and a bit of bragging and a big thank you for the real fuel that keeps me going.
Thursday, April 2, 2015
The Joy in Mudville
It finally reached 70 degrees in Bloomington, which is the sign that we've nearly completed our transition from Winter to Spring. There may be freak snow, a bit of frost across the grass in the morning, but we are on our way to 100% humidity and 90 degrees.
I have always found the transition of these seasons to be difficult; my body feels like it's been cut in two and moves in different directions. This year, I suspect the difficult transition has made me constantly tired, constantly sleepy, sluggish when I'm up and diffident to depth when I sleep. My trach tube is full of the--wait for it--effluvia and difficult to deal with...for some reason none of it wants to leave. This is a nice house, it seems to say, and we are in it to win it. This, and only this, is why I fear death by choking,
The next surgery has its schedule--April 15. You pay your taxes, I pay my cancer dues. I'm apprehensive about the recovery period, how I heal where they take skin for grafting, how I heal where they put a drain in my back from the muscle they pull around the body, how it will be once Krakatoa, my personal volcano, is cut out of me. I suppose this is normal apprehension, but it feels like prediction--bad omens circle me (I've been watching I, Claudius, on Huluplus, so forgive me the Roman reference).
Good omens, though, come in the form of my niece who proposes to visit with her Batman-obsessed husband, and children, and another of my nieces, and potentially her boyfriend. So I get to make a lunch for Easter, an Indiana throw down of chicken and ham, potatoes in some format, maybe some steamed asparagus or cauliflower. The Easters of my far younger days were spent eating...ham, potato salad, those oddly sweet little gherkins, black olives from a can. All of my basket's chocolate in one day, of course, and part of my brother's.
Now that I can't eat or drink normally, I enjoy seeing other people do it. I'm like a tourist at a luncheon party, one who has visited before--I know where the landmarks are, and on this trip, I want to see how the natives live. I'm fascinated to see what people choose to eat, how much of it, what works and what doesn't in the cookery. As a cook, I want people to love what I make, though not being able to taste it is a great disadvantage--but no more so than those people on "Chopped" who inexplicably make sauces out of the grossest combinations of ingredients and then don't taste it before the judging. That's either excess ego or excess stupidity.
I haven't thought much of my life post-surgery this time. The last time, the major surgery, I saw myself as returning pretty much to normal, albeit 85% tongueless. I rather thought I'd just be Mark again. I woke thinking I looked the same, I acted as if I was him. I never want to go through the experience of such a let down again. So I don't think of what will be, I think of what is. I'll still have the Scream Mask mouth, I'll still drool, I'll still have the neck hole, I'll still have the numb feet. I'll still be the Frankenstein, and for a couple of weeks, my chest will resemble his rather full cloth. There will be surgical staples (ugh, gross), and drainage and whatever vulgarity cancer can throw at me.
What won't be--a tumor that is potentially releasing it's constant toxicity into my bloodstream and it's errant re-programmed cells into my bloodstream and lymph system. For this alone, everything is worth it. This is the first real step to control, given that frying me like a KFC special and bathing me in chemicals week after week have gotten us just to the point where this is possible. Control means the balance isn't just me on the light side of the seesaw. It means 70 is more possible than it was.
After two years of fighting, I'm amazed. That every day has required me to act and think 100% to the positive side, to physically ignore that I'm tired, to try to be part of life as it swims all around me. The surgery offers the possibility of a second gear, a place where I can rest a bit. By rest I mean my mind, the true battleground of cancer--there's the possibility I want have to manically support myself and cheer for myself and attaboy myself every damn minute of the day--that I can daydream, and wander and think and plan.
Lately, I've been walking in mud, living in Mudville, napping hours and hours per day. My mind needs some refreshment, some visual stimulation, something that the 14th Century, a biography of Catherine the Great, binge watching (rewatching) the X Files, or reading about Indiana's weird grasp of discrimination don't offer.
The joy in Mudville is that I've nearly waded through it to the outskirts. Where the normal people live. And if they chase me off with torches, so be it. My creators, in their shiny medical castles, will always welcome me back. I'm big business, and a whole lot of fun to chop up.
I have always found the transition of these seasons to be difficult; my body feels like it's been cut in two and moves in different directions. This year, I suspect the difficult transition has made me constantly tired, constantly sleepy, sluggish when I'm up and diffident to depth when I sleep. My trach tube is full of the--wait for it--effluvia and difficult to deal with...for some reason none of it wants to leave. This is a nice house, it seems to say, and we are in it to win it. This, and only this, is why I fear death by choking,
The next surgery has its schedule--April 15. You pay your taxes, I pay my cancer dues. I'm apprehensive about the recovery period, how I heal where they take skin for grafting, how I heal where they put a drain in my back from the muscle they pull around the body, how it will be once Krakatoa, my personal volcano, is cut out of me. I suppose this is normal apprehension, but it feels like prediction--bad omens circle me (I've been watching I, Claudius, on Huluplus, so forgive me the Roman reference).
Good omens, though, come in the form of my niece who proposes to visit with her Batman-obsessed husband, and children, and another of my nieces, and potentially her boyfriend. So I get to make a lunch for Easter, an Indiana throw down of chicken and ham, potatoes in some format, maybe some steamed asparagus or cauliflower. The Easters of my far younger days were spent eating...ham, potato salad, those oddly sweet little gherkins, black olives from a can. All of my basket's chocolate in one day, of course, and part of my brother's.
Now that I can't eat or drink normally, I enjoy seeing other people do it. I'm like a tourist at a luncheon party, one who has visited before--I know where the landmarks are, and on this trip, I want to see how the natives live. I'm fascinated to see what people choose to eat, how much of it, what works and what doesn't in the cookery. As a cook, I want people to love what I make, though not being able to taste it is a great disadvantage--but no more so than those people on "Chopped" who inexplicably make sauces out of the grossest combinations of ingredients and then don't taste it before the judging. That's either excess ego or excess stupidity.
I haven't thought much of my life post-surgery this time. The last time, the major surgery, I saw myself as returning pretty much to normal, albeit 85% tongueless. I rather thought I'd just be Mark again. I woke thinking I looked the same, I acted as if I was him. I never want to go through the experience of such a let down again. So I don't think of what will be, I think of what is. I'll still have the Scream Mask mouth, I'll still drool, I'll still have the neck hole, I'll still have the numb feet. I'll still be the Frankenstein, and for a couple of weeks, my chest will resemble his rather full cloth. There will be surgical staples (ugh, gross), and drainage and whatever vulgarity cancer can throw at me.
What won't be--a tumor that is potentially releasing it's constant toxicity into my bloodstream and it's errant re-programmed cells into my bloodstream and lymph system. For this alone, everything is worth it. This is the first real step to control, given that frying me like a KFC special and bathing me in chemicals week after week have gotten us just to the point where this is possible. Control means the balance isn't just me on the light side of the seesaw. It means 70 is more possible than it was.
After two years of fighting, I'm amazed. That every day has required me to act and think 100% to the positive side, to physically ignore that I'm tired, to try to be part of life as it swims all around me. The surgery offers the possibility of a second gear, a place where I can rest a bit. By rest I mean my mind, the true battleground of cancer--there's the possibility I want have to manically support myself and cheer for myself and attaboy myself every damn minute of the day--that I can daydream, and wander and think and plan.
Lately, I've been walking in mud, living in Mudville, napping hours and hours per day. My mind needs some refreshment, some visual stimulation, something that the 14th Century, a biography of Catherine the Great, binge watching (rewatching) the X Files, or reading about Indiana's weird grasp of discrimination don't offer.
The joy in Mudville is that I've nearly waded through it to the outskirts. Where the normal people live. And if they chase me off with torches, so be it. My creators, in their shiny medical castles, will always welcome me back. I'm big business, and a whole lot of fun to chop up.
Saturday, March 14, 2015
Looking for the Spring of Things
I am knee deep in garden porn, new variants of old favorite plants, bold colors that will lift my spirits and make my yard look better than the heteros who surround me. I know, it's not much of a brag, but you gotta do what you gotta do, and I gotta dig.
We are really about 3 weeks from prime digging time, and planting in this zone shouldn't take place before Memorial Day, but it always does. We really start to warm up in April, usually, though last year was not good. But May 1, and after, it usually moves from the tiny little mild Spring weather we have for 3 days, into humid and hot, consistently over 70, consistently annoying Summer. I say annoying because I burn, therefore I am.
This is one event, the digging time, that I look forward to all year. I put on headphones, I play The Smiths station or the Kylie Station or the Goldfrapp station on my Pandora list and just zone. I dig, fall to my knees, and pull the dead vegetation out of the clumps, break them up, move on. Dig, drop, declump, dig, drop, declump. It's a weird heaven, but that can't be fixed.
This year, my surgery now expected by the end of March, will take at least a month for me to normalize a bit afterwards; this interrupts my chi. This compresses my digging schedule into May, when I'd normally be early planting. In my state, in my old man-ism, the digging schedule takes place over two weeks or so--there's just so much I can do in a day, and I recognize that limitation. And this year my hagged out garden needs a lot of work, plus I finally plan to herbicide the shit out of it, because I can't keep up with how fast weeds grow when the rain is nice and steady and the temperatures are glorious, as they were last summer. Well, glorious as it gets around here.
Despite that relatively minor gripe, the entirety of the approaching time to plant gives me lift and optimism. Anticipation of pleasure, the wonderful running around looking for native Indiana species (my new passion), and a few of the old favorites (Asian lilies on sale at Lowe's for half-off after their normal flowering season has passed). This is the optimistic time when I conspire to fix a bed, or an area, and this year I plan to do a big fern planting in a new part of my shade garden and I'm so excited about his that I could pee.
I know I've written about his before but it bears repeating: I run on optimism. It's my gasoline, my internal fusion plant, and without it, I quickly revert to a worrying, fumbling, half-dead, idiot. I create, in my life calendar, reasons for it. I write this blog which reminds me of it. I tell people everything is fine when obviously I'd rather not look as I do, or live as I do, because those are just conditions, and talk counts when you're keeping your head up.
I have been both lucky and unlucky with doctors in this regard. I've met those who with one look wrote me off and refused to listen to me when I told them how unprofessional their attitude was--but of course that didn't make me patient of the year in their eyes--just another deluded patient. Yet in the relationships that count with doctors, I've consistently hit the jackpot. My oncologists, Dr. Kramer in San Francisco, and Dr. Dayton, here, have both proven to match and even exceed my own blue skyisms at times; when chemo works, an oncologist is truly a happy person to be around, and mine has worked wonders. To be clear, in my case, a wonder was living, and I'm doing that like villain.
It's been of late Dr. Dayton, whose joy in my upward ticks both amuses and inspires me, that has more than matched me in positive thinking. He's been the way I chart through what I hear in one place, read online, see in the New York Times, hear anecdotally, feel internally, wonder about with concern. And the point of this is that you need that person, that one person, who sits at the center of your health universe and helps you make sense of it all because it does not make sense.
Often enough, between insurance companies and doctor's offices, you need to translate variants of English that you didn't even know existed. In explaining procedures, their time needs, their expected outcomes and expected side effects, doctors often revert to Med School lectures at a verbal pace of whythefuckdoIhavetosaythisjustshutuplaythereandtakeitbecauseIknowbetterthanyoueverwill. In blue skyism the only possible answer to such a thing is: I don't think you do, but thanks for the laugh.
I continually find that the life of a cancer patient is so much more complicated than I ever expected. I had this idea that upon a diagnosis of cancer, one's life became like a series of Belgian tapestries, circa 14th century. A scene of shock, a scene of treatment, a scene of losing one's hair, a scene of recovery, a scene of an Odysseus-ish return to a new normal. It does not work like that at all.
So many roadblocks are thrown at you, so much pre-conception, so much judgment, that it shocks one. And then if the conditions you are working around are severe, like my inability to speak, it becomes a fucking nightmare. Here's an example: My stupid home health provider, who vends my enterals (food) to me will not take orders over email and I cannot speak, and I will not make Charles take a phone call when I can be dealt with easily. They claim email is insecure but you know what? The Secret Service will let the President have email but they will not let him have a commercial smart phone because-duh-they are incredibly easily hacked and data is incredibly easy to sweep from them. Yet because I cannot speak, I cannot work with them because I cannot work with them from an easily hackable fucking cell phone.
In fact, any health care provider will discuss your intimate details readily on the world's most monitored, hacked, swept, data-losing, platform, but will refuse to do so by email. Too insecure. I mean you have to laugh or you'd just buy a gun.
So, I see Dayton, and instantly, I feel better. I saw him Friday (yesterday as I'm writing this) and I still feel better about life. I feel better about the surgery upcoming, I feel more informed and more capable to deal with recovery, I know better what to expect. I like that he doesn't pretend to know everything, and that we can have a fun but informative conservation about the most important topic in my life--me.
I read garden porn and I know that all I want is to kill weeds and plant beauty and enjoy the benefits of both. I want to watch Rally schnoodle his way through the shade garden which he loves as much as the birds and insects have proven to love it too. Even with my interferences it's mostly just naturalized space, the wild violets prove to be powerful, but too pretty to just uproot every year.
At some point I'll be out with my Gator mini-chain saw hacking down those stupid shade bushes that are pissing me off, the stupid mulberrys that grow everywhere because birds shit everywhere, and my weed whacker, my wheelbarrow (a new one coming!) and my spade (a new one of those, too), and I'll be in hog heaven...I love it. I feel warm, I like to feel the dirt, I like to imagine where I'll plant what. I'll be thinking how much I like blue skies and how much I wish I'd know that about myself way earlier. It would have spared me much grief.
But that's life, isn't it? It takes a log to pluck the toothpick from one's eye.
We are really about 3 weeks from prime digging time, and planting in this zone shouldn't take place before Memorial Day, but it always does. We really start to warm up in April, usually, though last year was not good. But May 1, and after, it usually moves from the tiny little mild Spring weather we have for 3 days, into humid and hot, consistently over 70, consistently annoying Summer. I say annoying because I burn, therefore I am.
This is one event, the digging time, that I look forward to all year. I put on headphones, I play The Smiths station or the Kylie Station or the Goldfrapp station on my Pandora list and just zone. I dig, fall to my knees, and pull the dead vegetation out of the clumps, break them up, move on. Dig, drop, declump, dig, drop, declump. It's a weird heaven, but that can't be fixed.
This year, my surgery now expected by the end of March, will take at least a month for me to normalize a bit afterwards; this interrupts my chi. This compresses my digging schedule into May, when I'd normally be early planting. In my state, in my old man-ism, the digging schedule takes place over two weeks or so--there's just so much I can do in a day, and I recognize that limitation. And this year my hagged out garden needs a lot of work, plus I finally plan to herbicide the shit out of it, because I can't keep up with how fast weeds grow when the rain is nice and steady and the temperatures are glorious, as they were last summer. Well, glorious as it gets around here.
Despite that relatively minor gripe, the entirety of the approaching time to plant gives me lift and optimism. Anticipation of pleasure, the wonderful running around looking for native Indiana species (my new passion), and a few of the old favorites (Asian lilies on sale at Lowe's for half-off after their normal flowering season has passed). This is the optimistic time when I conspire to fix a bed, or an area, and this year I plan to do a big fern planting in a new part of my shade garden and I'm so excited about his that I could pee.
I know I've written about his before but it bears repeating: I run on optimism. It's my gasoline, my internal fusion plant, and without it, I quickly revert to a worrying, fumbling, half-dead, idiot. I create, in my life calendar, reasons for it. I write this blog which reminds me of it. I tell people everything is fine when obviously I'd rather not look as I do, or live as I do, because those are just conditions, and talk counts when you're keeping your head up.
I have been both lucky and unlucky with doctors in this regard. I've met those who with one look wrote me off and refused to listen to me when I told them how unprofessional their attitude was--but of course that didn't make me patient of the year in their eyes--just another deluded patient. Yet in the relationships that count with doctors, I've consistently hit the jackpot. My oncologists, Dr. Kramer in San Francisco, and Dr. Dayton, here, have both proven to match and even exceed my own blue skyisms at times; when chemo works, an oncologist is truly a happy person to be around, and mine has worked wonders. To be clear, in my case, a wonder was living, and I'm doing that like villain.
It's been of late Dr. Dayton, whose joy in my upward ticks both amuses and inspires me, that has more than matched me in positive thinking. He's been the way I chart through what I hear in one place, read online, see in the New York Times, hear anecdotally, feel internally, wonder about with concern. And the point of this is that you need that person, that one person, who sits at the center of your health universe and helps you make sense of it all because it does not make sense.
Often enough, between insurance companies and doctor's offices, you need to translate variants of English that you didn't even know existed. In explaining procedures, their time needs, their expected outcomes and expected side effects, doctors often revert to Med School lectures at a verbal pace of whythefuckdoIhavetosaythisjustshutuplaythereandtakeitbecauseIknowbetterthanyoueverwill. In blue skyism the only possible answer to such a thing is: I don't think you do, but thanks for the laugh.
I continually find that the life of a cancer patient is so much more complicated than I ever expected. I had this idea that upon a diagnosis of cancer, one's life became like a series of Belgian tapestries, circa 14th century. A scene of shock, a scene of treatment, a scene of losing one's hair, a scene of recovery, a scene of an Odysseus-ish return to a new normal. It does not work like that at all.
So many roadblocks are thrown at you, so much pre-conception, so much judgment, that it shocks one. And then if the conditions you are working around are severe, like my inability to speak, it becomes a fucking nightmare. Here's an example: My stupid home health provider, who vends my enterals (food) to me will not take orders over email and I cannot speak, and I will not make Charles take a phone call when I can be dealt with easily. They claim email is insecure but you know what? The Secret Service will let the President have email but they will not let him have a commercial smart phone because-duh-they are incredibly easily hacked and data is incredibly easy to sweep from them. Yet because I cannot speak, I cannot work with them because I cannot work with them from an easily hackable fucking cell phone.
In fact, any health care provider will discuss your intimate details readily on the world's most monitored, hacked, swept, data-losing, platform, but will refuse to do so by email. Too insecure. I mean you have to laugh or you'd just buy a gun.
So, I see Dayton, and instantly, I feel better. I saw him Friday (yesterday as I'm writing this) and I still feel better about life. I feel better about the surgery upcoming, I feel more informed and more capable to deal with recovery, I know better what to expect. I like that he doesn't pretend to know everything, and that we can have a fun but informative conservation about the most important topic in my life--me.
I read garden porn and I know that all I want is to kill weeds and plant beauty and enjoy the benefits of both. I want to watch Rally schnoodle his way through the shade garden which he loves as much as the birds and insects have proven to love it too. Even with my interferences it's mostly just naturalized space, the wild violets prove to be powerful, but too pretty to just uproot every year.
At some point I'll be out with my Gator mini-chain saw hacking down those stupid shade bushes that are pissing me off, the stupid mulberrys that grow everywhere because birds shit everywhere, and my weed whacker, my wheelbarrow (a new one coming!) and my spade (a new one of those, too), and I'll be in hog heaven...I love it. I feel warm, I like to feel the dirt, I like to imagine where I'll plant what. I'll be thinking how much I like blue skies and how much I wish I'd know that about myself way earlier. It would have spared me much grief.
But that's life, isn't it? It takes a log to pluck the toothpick from one's eye.
Friday, February 27, 2015
Party and Bullshit: My Date with Dayton
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.
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.
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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