Thursday, and Scott is on his way from San Francisco for his adventure in babysitting an apprehensive 52 year old. There's a specialist license in there for sure, and some community college should jump on it.
The aging population guarantees that there are more of me to come. A new silent majority of people who've had no surgery since childhood (Tonsils, 1966, for me), little experience with the steaming heart of the health care system, and no history of other medical problems by which we may have learned how to deal with the entirety of the situation. We need babysitters--people who can yell for nurses and quiz doctors and check off the questions organized by category on a clipboard.
File keepers--knowing that everything is documented and all documentation is evidence, the Adult Cancer Babysitter will track deliverables and appointments on both sides of the coin. As a lone entity in the health care system, you'll be bent to their convenience without just such a special advocate, driver and blender jockey.
So, I kid, a bit--but I'll be leaning on Scott to unleash the ill concealed bulldog that rests and glares just under his pleasant surface. As a triathlete, as a guy who has had his own share of run-ins with doctors who are phoning it in, institutions that treat your time as a given to their needs, he has a pretty solid idea of how to get things done. And he wants to, which makes this less a job but certainly not a vacation in the spa state of Indiana.
There is a need for advocates in the system who are not of the system. Those who can without equivocation or reference to an impending raise, tell the hospital staff to up their game or the doctor to focus his. Nicely, of course, but an ombudsman's ultimate job is not nice, but efficient; an advocate is not impolite but focused.
I fell for my advocate a few months back because we share a broad range of core ideas and beliefs, laugh at similar things and want to be in love. The last thing is what most people miss in forming relationships. It's easy enough to do because it's a simple phrase that masks a very diligent set of behaviors.
Wanting to be in love implies a willingness to shut up and listen, to bend when the wind blows, to admit error, to process criticism without complaint, and to make oneself known too in just those ways, in equal measure, daily. Love is, of its own virtues, nice. It can be a great lift to the day, the sex can be wonderful, the feeling of connectedness addicting--but if you don't want to be in love, all you're doing is skimming the very shallow creamy surface of a bottle of emotion, and even at skimming, it won't last long.
Wanting to be in love is like wanting to survive, too. To know that around the corner is loss of an unspecified magnitude--and yet being able to say you want to survive the situation and be the best person available to what's left to be-- Monday, I will lose something--and certainly I've lost the old me already. But I'll lose tangible parts--my tongue, my old jaw perhaps, maybe my voicebox. I may breathe through my neck for the rest of my life. I may never taste again. But I want to survive and I will lose those things and work through it.
We'll know more facts by Tuesday. But facts don't push this agenda quite like emotions. I can cry a thousand times over physical mars--and I will. I don't intend to Rushmore my mourning period for the body and the life that was. But if I cry once over my babysitter, that would eclipse any pain I feel for my own small defeats.
Besides, he promises me I can stay up late, watch all the shitty TV I want, and have as much Nutren as I can shove down this tube!
Thursday, February 28, 2013
Wednesday, February 27, 2013
Dancin' on the floor, dancin' on the table, dancin' on the chair dancin' everywhere
I wonder when I travel: did the highway just get longer? I grew up watching the Twilight Zone, so I know there's precedence implanted in my psyche for such inexplicability
As I experience everything as a journey (that, a habit I picked up from reading Anne Sexton), I'm looking for mile markers to done with cancer. I know it's early, but I do best when I can say that 300 miles is, at my current rate of unchanging speed, x hours of driving. It helps me not eat trashy burgers when I travel, it minimizes peeing, it encourages prior planning for good snacks in the car. Note that I have never worn a diaper, or brought a pee can, or pulled a crazy Houston astronaut trying to go kill an ex-boyfriend in Florida.
My highway did a TZ this evening with my first delivery of Home Health care supplies--new tube parts, 2 weeks of formula, new infusion tubes, and the dreaded patient education. They are admirably fast--this was set up this morning and it arrived this evening. So, before I make any complaint, let's all admire a moment of efficiency, courtesy of the system.
And I'm not going to moan so much as note that it seems the mile marker to done flipped upward as the hand truck passed the stoop...I mean, Home Health. Me. Who, six months ago, would pick us out as partners? Not me. No one I know. I was routinely doing hundreds of push ups and sit ups, and working with dumb bells, and pull ups--all in that well known 52 year old man groove of being hot enough for love, at 52.
(before you laugh remember: you live in this youth obsessed culture and you'll go through the same thing!)
There's been a fire sale on unproven ideas in the mass consumer health market, and we all know it. Creams called Regenerist. Ads that claim that masque A or serum B can "change your DNA" (wouldn't the dinosaurs have loved some of that?). The idea that licking or sticking testosterone into a man is the primo way to extend life, erections, and the pursuit of male irresponsibility. The tendency to covet a multi-vitamin more than a balanced diet. The certainty that whatever ailment exists there is secret native knowledge to overcome it, and we've simply lost the correct combination and dosage of sage/black thistle/horny goat weed/gingko/ fish oil/ goldenrod/raw honey/ and so forth, to cure anything.
And, while I don't do hippy cure alls as a matter of first course, I've been affected, hopeful even, that those assertions are correct.
So the entry of boxes of Nestle's formula, "Nutren" (possibly the name of the Viking Goddess of Good Eating), set my destination instantly further back on the asphalt I'm speeding to done with ths shit.
I've quietly suspected a year until I'm able to eat, somewhat normally. Inclusive of the chemo and radiation to follow this surgery, inclusive of the healing of the reconstructed muscle that will pass for a tongue, inclusive of the training to do so without drooling. March 2014. Girl Scout cookies and Rib Eye sandwiches for all!
Grousy doctor of course brought up the "may never eat normally again" scenario.And I'm not ignoring it. I just have my head in a course on miracles, brought forth by a universe motivated with fairness toward the heavy ticket I've just paid for speeding through a metaphorical landscape.
This follows the idea that astrological signs laboring under the influence of Saturn receive no shortcuts and learn, maximally, the lessons life will teach both good and bad. Saturn entered my sign of Scorpio last October and by November, this story had commenced. So, being a believer to the extent that I know Saturn entered Scorpio, Ladies and Gentlemen I present Cancer: A Love Story.
There will be no hurrying for the next two years, according to Saturn. One will move as the world moves and as the mind apprehends. So instead of hurrying off to finish, stay where you are and dance.
The mad waltz done to the way they ring the bells in Bedlam.
As I experience everything as a journey (that, a habit I picked up from reading Anne Sexton), I'm looking for mile markers to done with cancer. I know it's early, but I do best when I can say that 300 miles is, at my current rate of unchanging speed, x hours of driving. It helps me not eat trashy burgers when I travel, it minimizes peeing, it encourages prior planning for good snacks in the car. Note that I have never worn a diaper, or brought a pee can, or pulled a crazy Houston astronaut trying to go kill an ex-boyfriend in Florida.
My highway did a TZ this evening with my first delivery of Home Health care supplies--new tube parts, 2 weeks of formula, new infusion tubes, and the dreaded patient education. They are admirably fast--this was set up this morning and it arrived this evening. So, before I make any complaint, let's all admire a moment of efficiency, courtesy of the system.
And I'm not going to moan so much as note that it seems the mile marker to done flipped upward as the hand truck passed the stoop...I mean, Home Health. Me. Who, six months ago, would pick us out as partners? Not me. No one I know. I was routinely doing hundreds of push ups and sit ups, and working with dumb bells, and pull ups--all in that well known 52 year old man groove of being hot enough for love, at 52.
(before you laugh remember: you live in this youth obsessed culture and you'll go through the same thing!)
There's been a fire sale on unproven ideas in the mass consumer health market, and we all know it. Creams called Regenerist. Ads that claim that masque A or serum B can "change your DNA" (wouldn't the dinosaurs have loved some of that?). The idea that licking or sticking testosterone into a man is the primo way to extend life, erections, and the pursuit of male irresponsibility. The tendency to covet a multi-vitamin more than a balanced diet. The certainty that whatever ailment exists there is secret native knowledge to overcome it, and we've simply lost the correct combination and dosage of sage/black thistle/horny goat weed/gingko/ fish oil/ goldenrod/raw honey/ and so forth, to cure anything.
And, while I don't do hippy cure alls as a matter of first course, I've been affected, hopeful even, that those assertions are correct.
So the entry of boxes of Nestle's formula, "Nutren" (possibly the name of the Viking Goddess of Good Eating), set my destination instantly further back on the asphalt I'm speeding to done with ths shit.
I've quietly suspected a year until I'm able to eat, somewhat normally. Inclusive of the chemo and radiation to follow this surgery, inclusive of the healing of the reconstructed muscle that will pass for a tongue, inclusive of the training to do so without drooling. March 2014. Girl Scout cookies and Rib Eye sandwiches for all!
Grousy doctor of course brought up the "may never eat normally again" scenario.And I'm not ignoring it. I just have my head in a course on miracles, brought forth by a universe motivated with fairness toward the heavy ticket I've just paid for speeding through a metaphorical landscape.
This follows the idea that astrological signs laboring under the influence of Saturn receive no shortcuts and learn, maximally, the lessons life will teach both good and bad. Saturn entered my sign of Scorpio last October and by November, this story had commenced. So, being a believer to the extent that I know Saturn entered Scorpio, Ladies and Gentlemen I present Cancer: A Love Story.
There will be no hurrying for the next two years, according to Saturn. One will move as the world moves and as the mind apprehends. So instead of hurrying off to finish, stay where you are and dance.
The mad waltz done to the way they ring the bells in Bedlam.
Tuesday, February 26, 2013
Edgy on the drug of yesterday
I am already in mourning for the light-hearted me of yesterday--the one who was thinking of the neat stack of goals he would have to attain until the next time he could eat a Girl Scout cookie.
In fact, I'm making a list--growing lengthy--of all the things I look forward to eating once power has been restored to the machinery. Today I fixated on birthday cake and Super Duper Burger in SF--with the sun on the back of my neck outside on Market Street, grass fed beef juice vulgar all over my face.
Today's long day of consults and testing I lurched from blow to blow to blow. I yelled at the Pre-op counseling doctor who wanted to take my blood pressure for the 3rd time within a half hour. I can't stand that horrrible feeling once and during this outing into the Cancer Leagues, I've had my BP taken every time I'm found standing still.
It's higher than normal right now. As I told the doc, I'm aware of that. Maybe the round the clock drugs; maybe the stress of a 2 month explosion of news growing steadily worse--one of those Chip n' Dale traps to blacken the garden guard dog. Maybe it's higher because I hate having it taken and you FUCKING WILL NOT STOP TAKING IT!!!
Higher because I slept 4 hours broken by 3 trips up and down. Elevated because I can't quite balance my diet as easily with liquids as I could with meat, starch, veggie. Maybe it's higher because yesterday--literally--was way more innocence than today.
The Dietician looked at me like a pear that was only half baked, and only half suited for a sprinkle of cinnamon and ice cream. I have to triple my intake. But at least she arranged all the background elements to get that done--all I do is sit like Jabba the Hut and let crap drip into me on an almost 24/7 basis for a while....tons more water! I'm zinc deficient! I hate multi vitamins and it shows!
The surgeon who will reconstruct what gets removed (tongue certainty--jaw seems a certainty to him--voice box a distinct possibility--permanent hole in my neck to breathe--without which either pneumonia or despression will kill me long before any cancer might do so. THANK YOU SO MUCH FOR NOT SUGAR COATING A SINGLE THING!
He pointed to the bone in my leg that might become that new jaw--the one that is bisected by major nerves, any damage to which might leave me gimpy, though that seemed remote to him. The one patient to whom such had happened appeared to relish the affectation of a cane. Yes, I'm not kidding.
The lezzie CT tech who nearly bulldozed me on and off the table with all the savoir of a much younger bulldagger encountering her first hardware store. I should have called her girl. it would have relaxed things a hell of a lot more.
Then finally, the rose of customer service at the Oral Surgeon's office who couldn't understand what I was saying and had to inform the woman next to her--in front of me--that she could get why I was there or what I wanted--because god knows if an Athena like that triple process can't figure you out, there's no reason for you to try. Silly, in fact.
I said to the goddess that I was there was a surgery consult about implants in my surgical plan. Apparently, this has never happened in the history of the IU School of Dentistry's Oral and Maxillofacial Surgical Practice...which either means there's a gross level of incompetence or no one is Indiana is smart enough to replace what they lose. They just get Aspen flippers.
Her problem, though, is the second oldest one known to man--encountering a person of dis-ability, whatever that disability is, is simply a way to exult that even something as low breed as you have thanks to give to The Lord for what he's spared you. Indeed that job must be perfect for her. Being a bitch of that degree requires a steady contribution of victims to feed its dumb.
I'm home now. I've had some Impact pre-surgical nutrition and some coffee that tastes shitty to me. The dogs are glad I'm back. Scott and Chuck have told me to dial it back and go one thing to one thing. The chief ENT called me to make sure I was ok after meeting his erstwhile partner--brilliant surgeon, twitchy face, blunt of manner.
As long as I wake up on Monday night or Tuesday morning his manner doesn't matter.
Soon enough, thoughts of a peanut butter sandwich will be supplanted by my new illegal drug--that of tomorrow, a bright pill, that when swallowed properly, allows spontaneous singing even while learning to speak again.
In fact, I'm making a list--growing lengthy--of all the things I look forward to eating once power has been restored to the machinery. Today I fixated on birthday cake and Super Duper Burger in SF--with the sun on the back of my neck outside on Market Street, grass fed beef juice vulgar all over my face.
Today's long day of consults and testing I lurched from blow to blow to blow. I yelled at the Pre-op counseling doctor who wanted to take my blood pressure for the 3rd time within a half hour. I can't stand that horrrible feeling once and during this outing into the Cancer Leagues, I've had my BP taken every time I'm found standing still.
It's higher than normal right now. As I told the doc, I'm aware of that. Maybe the round the clock drugs; maybe the stress of a 2 month explosion of news growing steadily worse--one of those Chip n' Dale traps to blacken the garden guard dog. Maybe it's higher because I hate having it taken and you FUCKING WILL NOT STOP TAKING IT!!!
Higher because I slept 4 hours broken by 3 trips up and down. Elevated because I can't quite balance my diet as easily with liquids as I could with meat, starch, veggie. Maybe it's higher because yesterday--literally--was way more innocence than today.
The Dietician looked at me like a pear that was only half baked, and only half suited for a sprinkle of cinnamon and ice cream. I have to triple my intake. But at least she arranged all the background elements to get that done--all I do is sit like Jabba the Hut and let crap drip into me on an almost 24/7 basis for a while....tons more water! I'm zinc deficient! I hate multi vitamins and it shows!
The surgeon who will reconstruct what gets removed (tongue certainty--jaw seems a certainty to him--voice box a distinct possibility--permanent hole in my neck to breathe--without which either pneumonia or despression will kill me long before any cancer might do so. THANK YOU SO MUCH FOR NOT SUGAR COATING A SINGLE THING!
He pointed to the bone in my leg that might become that new jaw--the one that is bisected by major nerves, any damage to which might leave me gimpy, though that seemed remote to him. The one patient to whom such had happened appeared to relish the affectation of a cane. Yes, I'm not kidding.
The lezzie CT tech who nearly bulldozed me on and off the table with all the savoir of a much younger bulldagger encountering her first hardware store. I should have called her girl. it would have relaxed things a hell of a lot more.
Then finally, the rose of customer service at the Oral Surgeon's office who couldn't understand what I was saying and had to inform the woman next to her--in front of me--that she could get why I was there or what I wanted--because god knows if an Athena like that triple process can't figure you out, there's no reason for you to try. Silly, in fact.
I said to the goddess that I was there was a surgery consult about implants in my surgical plan. Apparently, this has never happened in the history of the IU School of Dentistry's Oral and Maxillofacial Surgical Practice...which either means there's a gross level of incompetence or no one is Indiana is smart enough to replace what they lose. They just get Aspen flippers.
Her problem, though, is the second oldest one known to man--encountering a person of dis-ability, whatever that disability is, is simply a way to exult that even something as low breed as you have thanks to give to The Lord for what he's spared you. Indeed that job must be perfect for her. Being a bitch of that degree requires a steady contribution of victims to feed its dumb.
I'm home now. I've had some Impact pre-surgical nutrition and some coffee that tastes shitty to me. The dogs are glad I'm back. Scott and Chuck have told me to dial it back and go one thing to one thing. The chief ENT called me to make sure I was ok after meeting his erstwhile partner--brilliant surgeon, twitchy face, blunt of manner.
As long as I wake up on Monday night or Tuesday morning his manner doesn't matter.
Soon enough, thoughts of a peanut butter sandwich will be supplanted by my new illegal drug--that of tomorrow, a bright pill, that when swallowed properly, allows spontaneous singing even while learning to speak again.
Monday, February 25, 2013
A Monday postscript
I've been fighting not so much to be up and happy, but to stay even-keeled. Thus the knocking of bad news and the soothe of better news, I try to handle each as process driven, expectable--but then again, it's been mostly negative news so far--I'm fairly early into the process proper.
My mother always had a very cheerful facade, but just a fingernail underneath, she was as tensile as the best sword steel. As cancer walked through her life, over and over, she worked her hardest at keeping that facade up and bright. Had you seen a traveling circus from the 19th century she could have been in the sideshow, "The Happiest Cancer Patient in America." But of course she wasn't.
I saw very little of the cracked side of the facade, though--I can only testify as someone who grew up around her--I simply know it was there. It was angry, and a bit manipulative, and always stunned that this crap kept happening to HER! I wish I would have seen more of it because I agreed with its methods, and its conclusions.
Sometimes anger is so wonderful. It shrinks the entirety of the universe down to a simple narcissistic formula that begs no computation. You already know your own math.
After my big day out, I've come home so tired and wiped out that I'm scared, and angry--is this what my life is to be? will small routine events become too big for ME? If so, then what the hell am I doing? Give up, and face the music...
Oh, that flute of self indulgence! the sweet lotus honey, the song that lures people like me onto rocks that--given we can't do laundry--we are destined to snag and flail upon.
The Ancient and Classical Civilizations of the Peloponnese are not my favorite models for self-governance and moderation, but they observed so finely, and keenly the actions of irrationality or exhuberance, moodiness or civic engagement--the emotions that motivated the action of people in similar situations, the early psychology of society. If Aeschylus were reading this, he'd instantly recognize a character in my mother.
He would recognize it in me too--very likely the same one. The competent and fear-checked voyager about to quail at the graping maws of the sea monster. He doesn't want to crack, but he must--that's a tragic flaw we all have.
Why did I yell at the dogs when they started begging dinner at 4 (they are seniors)? A simple view of the white shaft of the monster's incredible tooth, a vision of what I'm expected to fight. Why did I give up on remaking the bed correctly? a lassitude that excused me from form, a matched set being a social nicety that I could not possibly require!
I know my mother now. I'm sorry I didn't see the larger veins of the fight she was waging.
My mother always had a very cheerful facade, but just a fingernail underneath, she was as tensile as the best sword steel. As cancer walked through her life, over and over, she worked her hardest at keeping that facade up and bright. Had you seen a traveling circus from the 19th century she could have been in the sideshow, "The Happiest Cancer Patient in America." But of course she wasn't.
I saw very little of the cracked side of the facade, though--I can only testify as someone who grew up around her--I simply know it was there. It was angry, and a bit manipulative, and always stunned that this crap kept happening to HER! I wish I would have seen more of it because I agreed with its methods, and its conclusions.
Sometimes anger is so wonderful. It shrinks the entirety of the universe down to a simple narcissistic formula that begs no computation. You already know your own math.
After my big day out, I've come home so tired and wiped out that I'm scared, and angry--is this what my life is to be? will small routine events become too big for ME? If so, then what the hell am I doing? Give up, and face the music...
Oh, that flute of self indulgence! the sweet lotus honey, the song that lures people like me onto rocks that--given we can't do laundry--we are destined to snag and flail upon.
The Ancient and Classical Civilizations of the Peloponnese are not my favorite models for self-governance and moderation, but they observed so finely, and keenly the actions of irrationality or exhuberance, moodiness or civic engagement--the emotions that motivated the action of people in similar situations, the early psychology of society. If Aeschylus were reading this, he'd instantly recognize a character in my mother.
He would recognize it in me too--very likely the same one. The competent and fear-checked voyager about to quail at the graping maws of the sea monster. He doesn't want to crack, but he must--that's a tragic flaw we all have.
Why did I yell at the dogs when they started begging dinner at 4 (they are seniors)? A simple view of the white shaft of the monster's incredible tooth, a vision of what I'm expected to fight. Why did I give up on remaking the bed correctly? a lassitude that excused me from form, a matched set being a social nicety that I could not possibly require!
I know my mother now. I'm sorry I didn't see the larger veins of the fight she was waging.
The Amazing Adventures of Cancer Boy at the Laundry
There are easily established facts about laundries. They are:
1. No business has more signs in it than a laundry;
2. No business with signs will have more with dire warnings on them than a laundry;
3. No laundry is ever empty;
4. Laundries are trashy;
5. Carrying your clothing to be washed into a laundry in a black trash bag is trashy;
6. No one is happy to be in a laundry--if they are happy, they are high.
Today, Charles left for San Jose where there's a meeting of the the Music Library Association. This is the annual meeting that I've been to a few times, and I'm sorry to miss this one. I'll won't have the traditional Ethiopian dinner with the kids I've seen for years at these events, though doing so this year would mean carrying a food processor into Little Abyssinia or whatever this year's name is and turning wat into tube-friendly glop.
I'm unsupervised for the first time as Cancer Boy--Scott won't be here until Thursday night. Yes! It's Party and Bullshit time! No? It's laundry time.
I'm parsing out some chores, none of which I find particularly pleasant to do, knowing that I have limited strength and endurance to accomplish the list. I have to not do piece work, but piece meal work through the stuff to be done--clean the shower, sort through the refrigerator, laundry, dog pie patrol, carpet cleaning--trust me, I won't get to half of it, and at a certain point I'll just laugh when I think I even have a list. But today, I'm at the laundry. And it's trashy.
I'm already tired. But in order to know where your stamina begins and ends, you have to engage it and find out. I usually don't do laundry--I made that Charles' problem because I loathe it so much. Most other housework is goal oriented--you wipe, it looks better. You spray, it smells better. Only laundry requires the use of a filthy public accommodation filled with crackheads who have TONS of t-shirts and 3 pair of pants. Only laundry--in public at least--smells so whorey, so Gain Gross, so uniquely chemical flower vomit.
I'm cycling through bedding new and old, some odd pieces that don't get done on a weekly basis, some misgivings from the foul rag and bone shop of my heart. First of them--someone will notice that I look like a camel (I do. I look a lot like the cartoon camel that tells little kids how cool those cigarettes are). I worry that I'll pass out while watching some dude shove tighty whiteys in the same machine as over-dyed black jeans. That today will be the day when my now semi-annual bowel movement demands to start--at the laundry.
I don't even want to wash clothes here, I'm certainly not doing the squat anywhere around here.
Why am I really here? Is it just to slam on trash (yes) and hate on dumb (yes)--well, actually, no. I'm here because I'm out of the house, doing something a normal guy might do were he off on a Monday. I'm remembering that there's normal to get back to by being it, not thinking of it like a far distant country I once visited. This time next Monday I'll be, probably, midway through the biggest surgery I hope I ever need. Normal means I'm facing it, scared of it, but wanting it to work in the worst possible way.
And normal means laundry.
1. No business has more signs in it than a laundry;
2. No business with signs will have more with dire warnings on them than a laundry;
3. No laundry is ever empty;
4. Laundries are trashy;
5. Carrying your clothing to be washed into a laundry in a black trash bag is trashy;
6. No one is happy to be in a laundry--if they are happy, they are high.
Today, Charles left for San Jose where there's a meeting of the the Music Library Association. This is the annual meeting that I've been to a few times, and I'm sorry to miss this one. I'll won't have the traditional Ethiopian dinner with the kids I've seen for years at these events, though doing so this year would mean carrying a food processor into Little Abyssinia or whatever this year's name is and turning wat into tube-friendly glop.
I'm unsupervised for the first time as Cancer Boy--Scott won't be here until Thursday night. Yes! It's Party and Bullshit time! No? It's laundry time.
I'm parsing out some chores, none of which I find particularly pleasant to do, knowing that I have limited strength and endurance to accomplish the list. I have to not do piece work, but piece meal work through the stuff to be done--clean the shower, sort through the refrigerator, laundry, dog pie patrol, carpet cleaning--trust me, I won't get to half of it, and at a certain point I'll just laugh when I think I even have a list. But today, I'm at the laundry. And it's trashy.
I'm already tired. But in order to know where your stamina begins and ends, you have to engage it and find out. I usually don't do laundry--I made that Charles' problem because I loathe it so much. Most other housework is goal oriented--you wipe, it looks better. You spray, it smells better. Only laundry requires the use of a filthy public accommodation filled with crackheads who have TONS of t-shirts and 3 pair of pants. Only laundry--in public at least--smells so whorey, so Gain Gross, so uniquely chemical flower vomit.
I'm cycling through bedding new and old, some odd pieces that don't get done on a weekly basis, some misgivings from the foul rag and bone shop of my heart. First of them--someone will notice that I look like a camel (I do. I look a lot like the cartoon camel that tells little kids how cool those cigarettes are). I worry that I'll pass out while watching some dude shove tighty whiteys in the same machine as over-dyed black jeans. That today will be the day when my now semi-annual bowel movement demands to start--at the laundry.
I don't even want to wash clothes here, I'm certainly not doing the squat anywhere around here.
Why am I really here? Is it just to slam on trash (yes) and hate on dumb (yes)--well, actually, no. I'm here because I'm out of the house, doing something a normal guy might do were he off on a Monday. I'm remembering that there's normal to get back to by being it, not thinking of it like a far distant country I once visited. This time next Monday I'll be, probably, midway through the biggest surgery I hope I ever need. Normal means I'm facing it, scared of it, but wanting it to work in the worst possible way.
And normal means laundry.
Sunday, February 24, 2013
Landmarking this hellcat
The first time I took the Pennsylvania Turnpike across the state, it took forever. I felt like I'd been deliberately dumped out in the middle of a bunch of Roy Rogers Restaurants and the moderately interesting scenery of a the long rural trip between each Roy. Of course, by the second time, I noticed landmarks and could say--ah, from here it's 6 hours to Harrisburg--or, Oh, the windy travel plaza on the side of the mountain--2 hours out.
Cancer landmarks haven't yet worked quite the same way--for one, they are way quicker. I've gone from bumpy tongue in late November to tongue the size of a nautilus shell at the end of February. There's a lymph node under my jaw that has it's own zip code in even less time. The fact that my tongue cancer is aggressive, and will make it to Harrisburg long before me, isn't in any doubt.
So I've wondered how to note events--for that hopeful future when I have my anniversary parties--anniversary of diagnosis, anniversary of surgery, Happy Birthday, Engorged Lymph Node,,,haaapy birthday to you!
Today was the first day that I found it very hard to swallow pills--which, I pretty much have to do. When I say very hard, I mean I had to dig the first percocets out of my throat because they just would not slide through the way they have been. The art of giving oneself pills while swole of tongue is this: A delicate pincer hold places the pill as far back as you can possibly stand sticking your fingers. The tongue, relatively immobile, no longer has the self-control or rather self-possession, to steer, or manipulate. The pill balances at the edge of the esophagus while you, head tilted back, grab the water and have enough of a blast to push it on down. I think of this as being akin to those Olympic divers who start their most intricate dives with handstands on the edge of the 30 meter platform.
Happy anniversary to a body that cannot swallow pills. And happy anniversary to the first truly happy moment I've had with my feeding tube. I cannot claim to love the benighted thing, but I felt a frisson of pleasure erupt throughout my body while I ground up my percocets and mixed them with water and sent them directly into the stomach. Nearly immediate pain relief! quite incredible. Happy anniversary to how I learned to stop whining and loving my feeding tube.
Tomorrow, I'll be back to plenty of griping. I have a series of preoperative consults and tests--all day in Indianapolis. All sorts of new health care providers will be trying to talk to me and ask me questions only to find that I cannot answer. Happy anniversary to the newly improved Silent Mark!
I'll let you know just how stupid it gets...
Cancer landmarks haven't yet worked quite the same way--for one, they are way quicker. I've gone from bumpy tongue in late November to tongue the size of a nautilus shell at the end of February. There's a lymph node under my jaw that has it's own zip code in even less time. The fact that my tongue cancer is aggressive, and will make it to Harrisburg long before me, isn't in any doubt.
So I've wondered how to note events--for that hopeful future when I have my anniversary parties--anniversary of diagnosis, anniversary of surgery, Happy Birthday, Engorged Lymph Node,,,haaapy birthday to you!
Today was the first day that I found it very hard to swallow pills--which, I pretty much have to do. When I say very hard, I mean I had to dig the first percocets out of my throat because they just would not slide through the way they have been. The art of giving oneself pills while swole of tongue is this: A delicate pincer hold places the pill as far back as you can possibly stand sticking your fingers. The tongue, relatively immobile, no longer has the self-control or rather self-possession, to steer, or manipulate. The pill balances at the edge of the esophagus while you, head tilted back, grab the water and have enough of a blast to push it on down. I think of this as being akin to those Olympic divers who start their most intricate dives with handstands on the edge of the 30 meter platform.
Happy anniversary to a body that cannot swallow pills. And happy anniversary to the first truly happy moment I've had with my feeding tube. I cannot claim to love the benighted thing, but I felt a frisson of pleasure erupt throughout my body while I ground up my percocets and mixed them with water and sent them directly into the stomach. Nearly immediate pain relief! quite incredible. Happy anniversary to how I learned to stop whining and loving my feeding tube.
Tomorrow, I'll be back to plenty of griping. I have a series of preoperative consults and tests--all day in Indianapolis. All sorts of new health care providers will be trying to talk to me and ask me questions only to find that I cannot answer. Happy anniversary to the newly improved Silent Mark!
I'll let you know just how stupid it gets...
Perchance to Dream
I had started writing a post yesterday and realized I could not focus enough to make any sort of lucid statement, let alone an interesting one. The night and morning of yesterday, I failed to sleep whatsoever. Whatever the causation, whatever the reason, I'm now of an age where greeting the sunrise is something I should want to do, not something that has to happen.
When, in earlier days, the dreaded 10 or 20 page term paper was due and I had to produce it, sunrise was a choosable option. Sure, I had to have an afternoon nap, but if that was the penalty, so be it. To be clear, I should go on record here as anti-nap, in general. I never wake refreshed from one, but sticky, vaguely smelly and disoriented.
A night without sleep is one of the things that will decouple me from common sense faster than anything. I couldn't think straight all day, my eyes closing while watching "Girls" on the Ipad. So, I began a day long attempt to have a nap. I counted: fifteen times I tried and fifteen times, within 5 minutes was up again. So I began to try different remedies to fix the nap problem.
I swept the carpet. I went outside and scooped dog pie in the backyard. I washed dishes. I had a cup of green tea (somehow that caffeine isn't like other caffeines). Nothing worked.
I've complained about doubling percocet before, but that was the only answer to the dilemma. 2 at 8pm, 2 at Midnight, and out of that, about 6 hours emerged by early Sunday morning.
It's a bit after 4am now and I'm way ahead of Apollo. I have a cup of green tea at my side. I'm thinking of doing some laundry. I'm wondering if maybe 6am might bring me back to bed.
I don't know why sleep is so hard. I can list causation, we'd probably all agree on the lot of them. All I know is that I'm no good without some of it, and not such a fighter when there's none.
When, in earlier days, the dreaded 10 or 20 page term paper was due and I had to produce it, sunrise was a choosable option. Sure, I had to have an afternoon nap, but if that was the penalty, so be it. To be clear, I should go on record here as anti-nap, in general. I never wake refreshed from one, but sticky, vaguely smelly and disoriented.
A night without sleep is one of the things that will decouple me from common sense faster than anything. I couldn't think straight all day, my eyes closing while watching "Girls" on the Ipad. So, I began a day long attempt to have a nap. I counted: fifteen times I tried and fifteen times, within 5 minutes was up again. So I began to try different remedies to fix the nap problem.
I swept the carpet. I went outside and scooped dog pie in the backyard. I washed dishes. I had a cup of green tea (somehow that caffeine isn't like other caffeines). Nothing worked.
I've complained about doubling percocet before, but that was the only answer to the dilemma. 2 at 8pm, 2 at Midnight, and out of that, about 6 hours emerged by early Sunday morning.
It's a bit after 4am now and I'm way ahead of Apollo. I have a cup of green tea at my side. I'm thinking of doing some laundry. I'm wondering if maybe 6am might bring me back to bed.
I don't know why sleep is so hard. I can list causation, we'd probably all agree on the lot of them. All I know is that I'm no good without some of it, and not such a fighter when there's none.
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