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.
Friday, February 22, 2013
Money makes the world go 'round
I cannot call myself a fan of Liza Minelli--I have not followed her singing career and haven't really engaged much with her concert persona. I maintain though that one of the finest performances I have ever seen accomplished by anyone in anything is her work in the film "Cabaret", and she astounds me in it every time I see it.
The title I chose here is of course leads me to think of her, though I believe it was the MC who sang the song in the film--Joel Grey, pernicious, vulgar and unctuous--also brilliant. Lately the more the US reminds me of the Weimar Republic, the more I think of Liza, Joel and Cabaret.
And the more I think of the slow sucking sound of a national tub of bathwater circling the drain of resolve, healthcare comes up Topic One. I freely admit that I tuned out the Obama health reform plan once I realized that single payer would not be included or discussed. That's the only rational way I can see to provide healthcare as a citizen right, and to ensure a relatively equal access policy. But I am a flaming communist or something; a kulak turned collectivist pursuing the evil of pooled production and flattened profit structures.
Or I'm just a guy with cancer who is scared out of his mind by what things cost in my life.
I do have insurance with my job, and that will limit my liability to the final tally of this incredible run of tests, scans, surgeries, formulas, jolts of radiation, bags of chemicals, pain killers, antibiotics, infection control, physical therapy, rehabilitation, psychological therapy, room charges, nurses, and god knows what else. Still, I'll find myself a few thousand dollars down the line with no buffer of cash against the unknown, and a feeling of utter exposure to the vagaries of modern life.
Worse, I'll be Mr. Pre-Existing Condition, someone upon whom the system will have likely already paid something like 350,000-500,000$ to keep alive. If that estimate seems high--and it might be--consider that one CT Scan that took one tech and I about 15 minutes to achieve cost slightly over $2000.
Yesterday, I sat in a surgical waiting room with about 20 other family groups--most of whom looked as if they didn't have any spare change to knock against the quarters they were gleefully feeding to the vending machines. They may be publicly financed, they may be insured through work--but in each case, more of the burden of cost is shifting to them, and to me, in every business' plan. The cap on out of pocket is going up. And if they have anything like what I do, the choice to not spend the money or run up the bill is to die. And not in a particularly friendly, managed, manner.
Total Buzzkill Factoid of the day: No one has spoken to me at any point, at any time, about any procedure in terms of cost. No one has attempted to tally up what the total expenditure of saving my life may be. No one has revealed what the several consultations I've undergone cost individually, or why they cost what they cost. Had I wished to be a smart consumer, to better manage the dollars I and my insurance company will spend on this project, I would had to fought through the pain, lassitude, fear and horror I'm feeling to push against this notable silence. I would have to ignore the voice inside of me that says--do what they say! do it, and get better, please!
Of course I want to live, and I want to live well. I want as many people as possible to tell me that I have every expectation of emerging from surgery in a state that will allow me to climb the mountain of my life at the pace I'm willing to engage to do so. That independence is what I'm good at--that challenge is what I find secretly wonderful in what's happening. That chance to prove I am who I claim to be and made of the type of piss and vinegar more akin to honey colored wine is a priceless opportunity in any life.
It costs money to climb. The right sort of gear, the training, the genetic lottery that handed you the body type to make such effort doable, not risible. You want to see the next sunrise. You want to see it from the top of Mount Mark. It takes money, money, money, to get there.
Charles and Scott have both pointed out to me that worrying about this will not make me better. True enough. But ignoring will ensure that I'm not better, either.
The title I chose here is of course leads me to think of her, though I believe it was the MC who sang the song in the film--Joel Grey, pernicious, vulgar and unctuous--also brilliant. Lately the more the US reminds me of the Weimar Republic, the more I think of Liza, Joel and Cabaret.
And the more I think of the slow sucking sound of a national tub of bathwater circling the drain of resolve, healthcare comes up Topic One. I freely admit that I tuned out the Obama health reform plan once I realized that single payer would not be included or discussed. That's the only rational way I can see to provide healthcare as a citizen right, and to ensure a relatively equal access policy. But I am a flaming communist or something; a kulak turned collectivist pursuing the evil of pooled production and flattened profit structures.
Or I'm just a guy with cancer who is scared out of his mind by what things cost in my life.
I do have insurance with my job, and that will limit my liability to the final tally of this incredible run of tests, scans, surgeries, formulas, jolts of radiation, bags of chemicals, pain killers, antibiotics, infection control, physical therapy, rehabilitation, psychological therapy, room charges, nurses, and god knows what else. Still, I'll find myself a few thousand dollars down the line with no buffer of cash against the unknown, and a feeling of utter exposure to the vagaries of modern life.
Worse, I'll be Mr. Pre-Existing Condition, someone upon whom the system will have likely already paid something like 350,000-500,000$ to keep alive. If that estimate seems high--and it might be--consider that one CT Scan that took one tech and I about 15 minutes to achieve cost slightly over $2000.
Yesterday, I sat in a surgical waiting room with about 20 other family groups--most of whom looked as if they didn't have any spare change to knock against the quarters they were gleefully feeding to the vending machines. They may be publicly financed, they may be insured through work--but in each case, more of the burden of cost is shifting to them, and to me, in every business' plan. The cap on out of pocket is going up. And if they have anything like what I do, the choice to not spend the money or run up the bill is to die. And not in a particularly friendly, managed, manner.
Total Buzzkill Factoid of the day: No one has spoken to me at any point, at any time, about any procedure in terms of cost. No one has attempted to tally up what the total expenditure of saving my life may be. No one has revealed what the several consultations I've undergone cost individually, or why they cost what they cost. Had I wished to be a smart consumer, to better manage the dollars I and my insurance company will spend on this project, I would had to fought through the pain, lassitude, fear and horror I'm feeling to push against this notable silence. I would have to ignore the voice inside of me that says--do what they say! do it, and get better, please!
Of course I want to live, and I want to live well. I want as many people as possible to tell me that I have every expectation of emerging from surgery in a state that will allow me to climb the mountain of my life at the pace I'm willing to engage to do so. That independence is what I'm good at--that challenge is what I find secretly wonderful in what's happening. That chance to prove I am who I claim to be and made of the type of piss and vinegar more akin to honey colored wine is a priceless opportunity in any life.
It costs money to climb. The right sort of gear, the training, the genetic lottery that handed you the body type to make such effort doable, not risible. You want to see the next sunrise. You want to see it from the top of Mount Mark. It takes money, money, money, to get there.
Charles and Scott have both pointed out to me that worrying about this will not make me better. True enough. But ignoring will ensure that I'm not better, either.
Thursday, February 21, 2013
Never mind the escalation
Before pure cancer buzzkill, illness and the doctor(s) were fairly distant concerns. Rising from the lower white middle class, I tried to be checked up regularly, I tried to--despite some bad habits--eat well. I maintained an outlook on health care that it was a luxury that bit hard of necessity, the way a sable is expensive but quite handy in a place like Siberia.
My views were reinforced by the relative ease of the entire experience. Make appointment, show up, be checked, possibly receive a fairly standard diagnosis, get drugs, fix it, talk about it for 3 days with everyone I know, move on. Azithromycin--like me, there's probably a few spare of those in your medicine cabinet as we read.
My ongoing problems are problems of a body that apparently never was subject to intelligent design. Sinuses that are just never quite drained, never quite happy. A twitchy knee. A couple of toenails that--having been broken by falling appliances, vases or other objets lourdes, never quite grew back with the beauty they lost, smashingly. I've learned to live with these things: tissue always present, Afrin addiction, a sports band, and virtually never being seen in public in flip flops. Diagnosis prescriptive, rehabilitation achieved.
The first billboard I saw driving into Cancerville said: Stage 2, treatable with chemo/radiation. The next said--see the oncologist, see the radiation oncologist. The third said: treatment starts in the head! That first drive was, although not a Sunday afternooner, something I could deal with. Start point. Endpoint.
It was upon entering the freeway loop around the great Cancer Metropolis that escalation became part of my life. Sign: Radiation won't work for you! big frown. Next: Chemo leaves you a 20 per cent chance of recovery, dumbass! The third: That Stage 2 is way more Stage 4. Margins may be involved. Surgery, radiation, chemo, and 50 per cent chance.
Escalation brought overpasses. Complicated by ways where grinning practitioners would eagerly flag you down and ask for a ride--only to tell you for your own good why the last plan might not be best. I know the extended metaphor is straining here but I actually did have a dream a whole lot like this, and from that time have seen the struts upon which it was built in the world I'm now encountering. It was a cream that hid that black in the coffee, true, but the coffee was obviously just that strong.
The test of you in the system is how well you handle escalation. How you look, cry, what you ask, what joke you tell. Those who mix stoicism with fatalism with practicality do, I wager, far better within the rigid concepts of who is ready and who is strong than those who simply yell, those who simply cry or those who simply shut up in shock. You are judged in the system as it ramps up on you because at no point will the system be able to give you the full picture of what lies ahead. This is not a broken bone. This is a broken structure.
How I react is not a reaction. It's a part of who I am and how I was raised. That I do not yell at people for that which is not to be helped. That I do not blame for that which was unpredictable. That I will not sue because this wasn't foreseen or diagnosed sooner. That I place empathy as the highest good in my relationships with others, whether empathy leads me to disdain one's problems or embrace them as something I desperately wish to fix. It is the same guide, and to me, the same mountain: different paths, disparate crowns.
Today, I was thinking of escalation as a camera was being forced down my throat. In order to place a g-tube, they work from both sides--a view of the inside, a hole from the outside. It makes perfect sense, and it was explained as part of the POSSIBLE treatment plan, allowing me to think I didn't have to go to the second floor and would not need the escalier automatique. Clever, yes, to think I wouldn't; impractical, definitely.
The blanking drugs thank god took over just as at mid throat I felt a panic fill me from this impossible big camera! Like a safari rider's, an image jockey from the National Geographic, it was about to choke me and...naught. I could go back to nothingness, I could have--for all I know, a broken bone.
I am polite to everyone I meet in the system. I ask informed questions, I make small jokes, I do not tax the people who I know damn good and well are heavily taxed. I refuse to escalate who I am in the story because that is not my job. My job is listen, react, accept, understand. Perhaps I make that sound passive but I have the hardest job. I have to reach out to a doctor who is telling me I will undergo something that horrifies me and offer them all the love I can muster and all the gratitude for their expertise I can express.
I am hard on the system, and I view it askance, and I express that here--but without it, I'd die like a latter day Henry VIII, only without the gold, opium and power to make it even mildly tolerable.
So, on the elevator to better, when my fellow passengers smile and push higher floors than I wish to go to, I ride too. Those passengers may know far better than me--I hope they know far better than me. I will see new views, perhaps even the one I long for--the 360 of magnificence, and finally, the way out, the causeway exit, the tunnel where the guerneys don't come creaking back to exam rooms.
My views were reinforced by the relative ease of the entire experience. Make appointment, show up, be checked, possibly receive a fairly standard diagnosis, get drugs, fix it, talk about it for 3 days with everyone I know, move on. Azithromycin--like me, there's probably a few spare of those in your medicine cabinet as we read.
My ongoing problems are problems of a body that apparently never was subject to intelligent design. Sinuses that are just never quite drained, never quite happy. A twitchy knee. A couple of toenails that--having been broken by falling appliances, vases or other objets lourdes, never quite grew back with the beauty they lost, smashingly. I've learned to live with these things: tissue always present, Afrin addiction, a sports band, and virtually never being seen in public in flip flops. Diagnosis prescriptive, rehabilitation achieved.
The first billboard I saw driving into Cancerville said: Stage 2, treatable with chemo/radiation. The next said--see the oncologist, see the radiation oncologist. The third said: treatment starts in the head! That first drive was, although not a Sunday afternooner, something I could deal with. Start point. Endpoint.
It was upon entering the freeway loop around the great Cancer Metropolis that escalation became part of my life. Sign: Radiation won't work for you! big frown. Next: Chemo leaves you a 20 per cent chance of recovery, dumbass! The third: That Stage 2 is way more Stage 4. Margins may be involved. Surgery, radiation, chemo, and 50 per cent chance.
Escalation brought overpasses. Complicated by ways where grinning practitioners would eagerly flag you down and ask for a ride--only to tell you for your own good why the last plan might not be best. I know the extended metaphor is straining here but I actually did have a dream a whole lot like this, and from that time have seen the struts upon which it was built in the world I'm now encountering. It was a cream that hid that black in the coffee, true, but the coffee was obviously just that strong.
The test of you in the system is how well you handle escalation. How you look, cry, what you ask, what joke you tell. Those who mix stoicism with fatalism with practicality do, I wager, far better within the rigid concepts of who is ready and who is strong than those who simply yell, those who simply cry or those who simply shut up in shock. You are judged in the system as it ramps up on you because at no point will the system be able to give you the full picture of what lies ahead. This is not a broken bone. This is a broken structure.
How I react is not a reaction. It's a part of who I am and how I was raised. That I do not yell at people for that which is not to be helped. That I do not blame for that which was unpredictable. That I will not sue because this wasn't foreseen or diagnosed sooner. That I place empathy as the highest good in my relationships with others, whether empathy leads me to disdain one's problems or embrace them as something I desperately wish to fix. It is the same guide, and to me, the same mountain: different paths, disparate crowns.
Today, I was thinking of escalation as a camera was being forced down my throat. In order to place a g-tube, they work from both sides--a view of the inside, a hole from the outside. It makes perfect sense, and it was explained as part of the POSSIBLE treatment plan, allowing me to think I didn't have to go to the second floor and would not need the escalier automatique. Clever, yes, to think I wouldn't; impractical, definitely.
The blanking drugs thank god took over just as at mid throat I felt a panic fill me from this impossible big camera! Like a safari rider's, an image jockey from the National Geographic, it was about to choke me and...naught. I could go back to nothingness, I could have--for all I know, a broken bone.
I am polite to everyone I meet in the system. I ask informed questions, I make small jokes, I do not tax the people who I know damn good and well are heavily taxed. I refuse to escalate who I am in the story because that is not my job. My job is listen, react, accept, understand. Perhaps I make that sound passive but I have the hardest job. I have to reach out to a doctor who is telling me I will undergo something that horrifies me and offer them all the love I can muster and all the gratitude for their expertise I can express.
I am hard on the system, and I view it askance, and I express that here--but without it, I'd die like a latter day Henry VIII, only without the gold, opium and power to make it even mildly tolerable.
So, on the elevator to better, when my fellow passengers smile and push higher floors than I wish to go to, I ride too. Those passengers may know far better than me--I hope they know far better than me. I will see new views, perhaps even the one I long for--the 360 of magnificence, and finally, the way out, the causeway exit, the tunnel where the guerneys don't come creaking back to exam rooms.
Patient Education: Dry as a Bone
the medical industry should never...
make their own DVDs and I come to this conclusion after watching a patient education video on post surgical care for tube insertion. The upside is that the monotone voice totally distracted me from the gross of what was going on in the presentation. This was a voice like Mary Hartman's discussing the virtues of lemon scented cleaners. It was the most singularly unaffected tone I've heard. The narrator did not vary when discussing the possibilities of post-surgical infection to the vom-inducing idea of "checking for residuals" after one has been given a feeding.
I've long held that the human body is disgusting, basically. I could never understand why anyone would choose to study it and the less I think of it, the better. I'm amazed that it's a fault map of crevices and patches where any number of creepy symbiotic relationships are pursued between it and the myriad microscopic vulgarities that call it home. One with a tube hanging out of it is not, therefore, designed to attract my affection, even my own.
So, this is a brief postscript before the tube goes in. Leaving in an hour. Tumbrels at the front door. Luckily no baying crowds!
Wednesday, February 20, 2013
The Distant Laugh of the Goddess of Sleep
One thing I've learned about cancer treatment--fairly early and easily: pain management is aggressive.
I have been asked at every appointment to discuss the pain I feel and to rate it on a scale of 1-10, which I find uniquely hard to do. Having not had a lot of persistent pain issues in my life, where do I start with how I feel now? Of course I don't want to invade the upper register just yet--I'd prefer to save that against the possibility that I'll need to escalate this game of self-diagnosis. I don't want to underestimate it because--damn--it's there, and it's always, and it has to find it's level for coping.
I've been going with 4, though I have used 6 to describe the more transient full head pain that accompanies the ear pain, which seems to coordinate with the pain that I feel...where? sort of in my jaw, in the roots of my teeth, in the teeth themselves, across the burning tongue...a happening that usually comes when it's time for bed, when my sinuses are fussy, when I'm tired.
The 4 rating nets a 5 mg percocet every 4 hours, bumpable to 10 mg. 5 tends to be the dose that keeps me just foggy enough that i shouldn't drive but can operate a vaccum cleaner or feed the dogs. 5 makes me aware that at 3:45 hours between doses, I need to head for the kitchen and take the next one.
10 is a dose that for me means I'll pretty much blank out into a type of sleep that I recall as a blank white sheet. It neither flaps in the breeze, revealing a pretty summer sun behind it nor is it pulled back like the scrim of a very amateur theatrical--just a white sheet that hangs there and prevents me from remembering much of whatever I dream, which doesn't seem that interesting to begin with...
Typically, I have story dreams. They seem quite complicated in retrospect, fully realized little mystery stories, romances, intrigues, full of people who know me and whom I in return know absolutely not. So percocet 10 mg, while slaying the beast of what jangle is rumbling in the head, does take away the fun of wondering why I'm talking to some ersatz Russian in a parking lot in some wild little story playing only in my head.
As you get older, sleep does simply become a bit harder to achieve and often less productive. As a younger guy, I had the blessing of falling asleep fast, staying there, and waking up totally refreshed. Not so much anymore, and not at all in Cancer town.
I'm sure that part of the problem plays out in the tiny little synaptic network that runs the unconscious mind, and that in there, I'm replaying scenes of everything my mother went through fighting cancer--breast and ovarian--for years. Years of chemo, years of relapses--all without much apparent break in her productivity--how the hell did she do that?
Right now, walking to the mailbox feels like work. Feeding the dogs a gulag sentence to hard labor. I know we all have our own reactions, our own limits, but damn it, I should be better than this! but right now, I'm not. I've wanted to be my mother's son for years, but never more than today.
Somewhere in that neural mesh, I'm seeing my sister who recently had an operation to remove a tumor from her neck, wrapped around her carotid artery--a situation so dire that the choices were operation or hospice. The only time I've ever seen my sister cry was when they were taking her to surgery--in 66 years. Never before. It was a moment I cannot and will not forget.
I am not a crier, but I have cried recently, and for me, quite a bit. It's not that I feel sorry for myself or put upon--as you can see, genetics were not stacked in my favor, I did smoke for many years, I may not have eaten everything I should have, I've never been a perfect person, yadda yadda yadda. I'm actually crying for what I believe are the reasons my sister cried that day.
We are no longer offered choice or choices. There is a wall to the left and the right. We are making the choice we are offered in extreme frustration, often on 2 or 3 hours of sleep--night after night. There is pain we aren't used to and can't control. Our toilets aren't pristine, our houses need to be dusted. We'd like to eat real food and can't.
And the simple request for 8 happy hours underneath the surface of consciousness, warm and comfortable? Not likely to happen anytime soon.
I have been asked at every appointment to discuss the pain I feel and to rate it on a scale of 1-10, which I find uniquely hard to do. Having not had a lot of persistent pain issues in my life, where do I start with how I feel now? Of course I don't want to invade the upper register just yet--I'd prefer to save that against the possibility that I'll need to escalate this game of self-diagnosis. I don't want to underestimate it because--damn--it's there, and it's always, and it has to find it's level for coping.
I've been going with 4, though I have used 6 to describe the more transient full head pain that accompanies the ear pain, which seems to coordinate with the pain that I feel...where? sort of in my jaw, in the roots of my teeth, in the teeth themselves, across the burning tongue...a happening that usually comes when it's time for bed, when my sinuses are fussy, when I'm tired.
The 4 rating nets a 5 mg percocet every 4 hours, bumpable to 10 mg. 5 tends to be the dose that keeps me just foggy enough that i shouldn't drive but can operate a vaccum cleaner or feed the dogs. 5 makes me aware that at 3:45 hours between doses, I need to head for the kitchen and take the next one.
10 is a dose that for me means I'll pretty much blank out into a type of sleep that I recall as a blank white sheet. It neither flaps in the breeze, revealing a pretty summer sun behind it nor is it pulled back like the scrim of a very amateur theatrical--just a white sheet that hangs there and prevents me from remembering much of whatever I dream, which doesn't seem that interesting to begin with...
Typically, I have story dreams. They seem quite complicated in retrospect, fully realized little mystery stories, romances, intrigues, full of people who know me and whom I in return know absolutely not. So percocet 10 mg, while slaying the beast of what jangle is rumbling in the head, does take away the fun of wondering why I'm talking to some ersatz Russian in a parking lot in some wild little story playing only in my head.
As you get older, sleep does simply become a bit harder to achieve and often less productive. As a younger guy, I had the blessing of falling asleep fast, staying there, and waking up totally refreshed. Not so much anymore, and not at all in Cancer town.
I'm sure that part of the problem plays out in the tiny little synaptic network that runs the unconscious mind, and that in there, I'm replaying scenes of everything my mother went through fighting cancer--breast and ovarian--for years. Years of chemo, years of relapses--all without much apparent break in her productivity--how the hell did she do that?
Right now, walking to the mailbox feels like work. Feeding the dogs a gulag sentence to hard labor. I know we all have our own reactions, our own limits, but damn it, I should be better than this! but right now, I'm not. I've wanted to be my mother's son for years, but never more than today.
Somewhere in that neural mesh, I'm seeing my sister who recently had an operation to remove a tumor from her neck, wrapped around her carotid artery--a situation so dire that the choices were operation or hospice. The only time I've ever seen my sister cry was when they were taking her to surgery--in 66 years. Never before. It was a moment I cannot and will not forget.
I am not a crier, but I have cried recently, and for me, quite a bit. It's not that I feel sorry for myself or put upon--as you can see, genetics were not stacked in my favor, I did smoke for many years, I may not have eaten everything I should have, I've never been a perfect person, yadda yadda yadda. I'm actually crying for what I believe are the reasons my sister cried that day.
We are no longer offered choice or choices. There is a wall to the left and the right. We are making the choice we are offered in extreme frustration, often on 2 or 3 hours of sleep--night after night. There is pain we aren't used to and can't control. Our toilets aren't pristine, our houses need to be dusted. We'd like to eat real food and can't.
And the simple request for 8 happy hours underneath the surface of consciousness, warm and comfortable? Not likely to happen anytime soon.
A Moveable Timeline
I didn't conceive or start this project at the exact moment that anything in the introduction happened, and I've considered trying to simply piece the narrative together event by event-good old chrono-style-but that simply won't work for me. Herein my rules, and as E. Pound had it: Damn Perhaps!
Tomorrow I'll have a g-tube put in my stomach and effectively start a campaign of weight maintenance by avoiding the mouth entirely and going straight to the source. G tube insertion is a surgical procedure, minor by the lights of many surgeries, but I'll still be out for an hour and given the whole twilight drug sequence so I neither remember nor recall. Fine by me.
When this story started in November, I weighed around 177, and I had fought that back from, perhaps, 185 tops. I've never been F A T but by my thoughts, my ideal weight is around 170. I was measured recently as one of my 20 or so sessions of "getting my vitals" at 5' 11' and 1/2...of course I round it to 6'. And some of my weight does manifest as muscle because I'm addicted to sit ups and push ups and, when in San Francisco, enjoy a 2-3 mile jog as much as the next aging middle-aged white gay guy.
The last naked weigh-in I did at my house showed 150.3 as my weight now--in February, from November, a 24 pound swing downwards--and I think the trend is that direction. It's hard to maintain weight by liquids, hard when you're stressed out, and hard when your appetite is questionable, though mine is actually decent. The problem is it's decent when I think of what I want to eat: Ribeye, peanut butter, cashews, steamed vegetables, rice with a lot of exotic seasoning, the hottest dosa I can source, K-Pop in the Castro, a plate of appetizers at any Lebanese restaurant...you see where this is going. Shwarma doesn't cooperate with the inability to chew, and neither--yet--does the attitude that guides my hunger.
My reaction to getting the tube was complicated, emotional; I cried. I cried hard. I cried about 30 discrete times and cried every time I had to tell someone it was going to happen. To everyone else, for whom the practical goal of "getting better" had already countenanced this sort of situation, there was the bland, calm prescriptive of how much better it's going to get. And I viewed this calmness with all the askance that any kid getting his ass beaten in an Oklahoma backwater might have to an "It Gets Better" video. Indeed, by the way, it does get better, but the getting to better is the problem, not the endpoint.
There are things that bother me about the tube so much, and involve so little. They talk about "feedings" as if I'm some vampire baby set loose in a blood bank--a zoo animal whose mother is too cut loose from its natural moorings to offer a teat would need feedings. I'm a man, dumbass, and I don't do "feedings." I eat.
Too, pouring beige liquid in a tube directly into my stomach is not quite the same thrill as imagining that ziti roiling down the drain and plopping with heavy satisfaction into my gut.
But tomorrow is tube day. I am today telling myself that 150 pounds is not what I wanted when I wanted to lose some weight. That I don't feel right. That my clothes do not fit whatsoever. That it scares me that jeans I bought 2 weeks ago are already a bit loose. That I can do anything and accept anything and I can, but I can accept it this time only with the immediate thought that this cannot be the final answer.
And, by the way, I am slowly learning that there are--in pure cancer buzzkill-ville, no final answers.
Tomorrow I'll have a g-tube put in my stomach and effectively start a campaign of weight maintenance by avoiding the mouth entirely and going straight to the source. G tube insertion is a surgical procedure, minor by the lights of many surgeries, but I'll still be out for an hour and given the whole twilight drug sequence so I neither remember nor recall. Fine by me.
When this story started in November, I weighed around 177, and I had fought that back from, perhaps, 185 tops. I've never been F A T but by my thoughts, my ideal weight is around 170. I was measured recently as one of my 20 or so sessions of "getting my vitals" at 5' 11' and 1/2...of course I round it to 6'. And some of my weight does manifest as muscle because I'm addicted to sit ups and push ups and, when in San Francisco, enjoy a 2-3 mile jog as much as the next aging middle-aged white gay guy.
The last naked weigh-in I did at my house showed 150.3 as my weight now--in February, from November, a 24 pound swing downwards--and I think the trend is that direction. It's hard to maintain weight by liquids, hard when you're stressed out, and hard when your appetite is questionable, though mine is actually decent. The problem is it's decent when I think of what I want to eat: Ribeye, peanut butter, cashews, steamed vegetables, rice with a lot of exotic seasoning, the hottest dosa I can source, K-Pop in the Castro, a plate of appetizers at any Lebanese restaurant...you see where this is going. Shwarma doesn't cooperate with the inability to chew, and neither--yet--does the attitude that guides my hunger.
My reaction to getting the tube was complicated, emotional; I cried. I cried hard. I cried about 30 discrete times and cried every time I had to tell someone it was going to happen. To everyone else, for whom the practical goal of "getting better" had already countenanced this sort of situation, there was the bland, calm prescriptive of how much better it's going to get. And I viewed this calmness with all the askance that any kid getting his ass beaten in an Oklahoma backwater might have to an "It Gets Better" video. Indeed, by the way, it does get better, but the getting to better is the problem, not the endpoint.
There are things that bother me about the tube so much, and involve so little. They talk about "feedings" as if I'm some vampire baby set loose in a blood bank--a zoo animal whose mother is too cut loose from its natural moorings to offer a teat would need feedings. I'm a man, dumbass, and I don't do "feedings." I eat.
Too, pouring beige liquid in a tube directly into my stomach is not quite the same thrill as imagining that ziti roiling down the drain and plopping with heavy satisfaction into my gut.
But tomorrow is tube day. I am today telling myself that 150 pounds is not what I wanted when I wanted to lose some weight. That I don't feel right. That my clothes do not fit whatsoever. That it scares me that jeans I bought 2 weeks ago are already a bit loose. That I can do anything and accept anything and I can, but I can accept it this time only with the immediate thought that this cannot be the final answer.
And, by the way, I am slowly learning that there are--in pure cancer buzzkill-ville, no final answers.
Tuesday, February 19, 2013
Starting this--just some notes
how it all happened....
Ah, there it was again...the pain in the back right side of my mouth--an old wisdom tooth that had cracked and decayed quietly began sending out it's not so gentle F U's to my central nervous system. I sighed. I hate the dentist, yet there was no way I could avoid a visit with this problem weighing me down.
Yet of course I hesitated. Was it that bad? could I deal with it? I was busy, we're all busy, it was November and my birthday was coming up. My first trip to San Francisco was coming up--I was going to see my new boyfriend and make my stay in his apartment...yes, it could wait.
Just before that trip, though, I found that my tongue looked whitish--wouldn't brush or scrape off. Oral thrush, I told myself. I went to a local store that specializes in homeopathic treatments for thrush--the causations for which are as diverse as stress, bad oral hygiene (gimp tooth qualifies here, I'd say) and, possibly, an inbalance in gut flora leading to a general bloom of yeastiness throughout the GI tract.
In SF, I wandered around a beautiful city with a beautiful guy, careful to follow the dosing of the pills and tincture that came in the remedy--the hippie box, I called it. I'm about the furthest thing from a hippie in appearance (way more J Crew than Granola Dude), but I think, and I admit still do, that when you can invoke nature to fix a small problem, why not save a thousand dollars, antibiotics, and the nameless, faceless, factory-like US health care system?
It seemed to work at first--or did I tell myself the tongue was less white? better -- stronger -- healing.
On my return to Indiana and prior to another trip to SF fro Christmas, I had the troublesome wisdom tooth pulled, and the one next to it, that it had infected--and all hell broke loose. Suddenly my sinuses were screaming pain, drainage was like the Love Canal, the extraction sites ached. I reasoned that my neural network had experienced a blip in connectivity and was misfiring everywhere. My tongue began to swell a bit, and whiten again. Curses, Hippy Drugs! I went to my doctor who agreed that it looked like thrush, a hard case of it. I swirled and spit Nystatin, Nystatin with Lidocaine, swallowed Nystatin...and little change. I began to sleep less, eat less, had to carefully maintain my hydrocodone and port it with me in case I ran up against its four hour time limit when--all effectual aid aside--the creepy throbbing mouth pain would begin again.
Let me just take a moment and say this: mouth pain is god awful. Frankly, I don't know where it ranks on the scale of various body pains, but surely it's significant. It can't be ignored, and frequently it can't be rationalized. And when the sinuses join in, and there's a fire bell going off from top to bottom, front to back, of the head--there's no thinking, no progress, no relief that seems at all possible.
Through all of this...
my boyfriend, Scott, kept insisting that I had to see an ENT, or another sort of specialist, anyone, who could give me another perspective on what was going on. I finally gave in and did so, after a miserable Christmas in San Francisco. My tongue got bigger, whiter, painful. My mouth was jangling like an old style party line phone. Still I thought it was a combination of the nastiest thrush and a nervous system that had been boinked by the tooth extractions--and it wasn't what I wanted to think, it was just what seemed right. There may be a word "Empiricism" but that word covers a whole lot of sins--evidence can be manufactured in ways you don't suspect to support facts that truly aren't....you can talk yourself into believing in anything based on empirical evidence, regardless of the fact bog from which that evidence slithered and crawled.
I'll back out a bit and here and say that it didn't take the ENTs long to figure out this wasn't thrush, and it didn't take them very long to jump over to cancer, or to suggest that was the direction it was going--what took forever was just navigating the system of talking to one guy, who refers you to another, who can only see you after a week, who only knows a discrete unit of the problem, and wants you to see this and such fellow, who's at a conference in San Diego until the 10th--and can you wait?--that's the shit pile of the US system. Balkanization to a degree that clogs patients into a great big driving extravaganza, a car show of parking lots and forms! Always the same forms! Always have to be filled out! Always the medical history! Always the same story! If you list that you once broke a bone, you should know where and when and how it was treated--in my case, the only prior surgery I'd had was in 1966, when I was 6, and had my tonsils out. You know what I remember from that? They fed me a shit ton of orange popsicles. That's what I remember because I could eat a shit ton of orange popsicles when I was six, sick or not.
I don't dwell on bad news often, or bad events--I try to learn and move because I think a moving ass is far harder for karma to kick. Motion, too, is a soothing experience whenever you've been stalled--by a personal tragedy, a break up or an illness. Get up, move. You will instantly feel better.
The upstream specialist ENT that I finally saw took about a minute to figure out that this was a tongue cancer and about a minute to arrange a surgical biopsy, and to his great credit, took a lot of time past those minutes to listen to my questions and answer them--even though by this time I would describe my speaking voice as Daffy Duck on ludes. My tongue is too big to allow my mouth to completely close, still white, but still definitely not thrush. No. This shit looks like cancer.
I'll back out a bit and here and say that it didn't take the ENTs long to figure out this wasn't thrush, and it didn't take them very long to jump over to cancer, or to suggest that was the direction it was going--what took forever was just navigating the system of talking to one guy, who refers you to another, who can only see you after a week, who only knows a discrete unit of the problem, and wants you to see this and such fellow, who's at a conference in San Diego until the 10th--and can you wait?--that's the shit pile of the US system. Balkanization to a degree that clogs patients into a great big driving extravaganza, a car show of parking lots and forms! Always the same forms! Always have to be filled out! Always the medical history! Always the same story! If you list that you once broke a bone, you should know where and when and how it was treated--in my case, the only prior surgery I'd had was in 1966, when I was 6, and had my tonsils out. You know what I remember from that? They fed me a shit ton of orange popsicles. That's what I remember because I could eat a shit ton of orange popsicles when I was six, sick or not.
I don't dwell on bad news often, or bad events--I try to learn and move because I think a moving ass is far harder for karma to kick. Motion, too, is a soothing experience whenever you've been stalled--by a personal tragedy, a break up or an illness. Get up, move. You will instantly feel better.
The upstream specialist ENT that I finally saw took about a minute to figure out that this was a tongue cancer and about a minute to arrange a surgical biopsy, and to his great credit, took a lot of time past those minutes to listen to my questions and answer them--even though by this time I would describe my speaking voice as Daffy Duck on ludes. My tongue is too big to allow my mouth to completely close, still white, but still definitely not thrush. No. This shit looks like cancer.
It is a pure buzzkill
to go from thinking a box of homeopathy sold in a hippie store would cure your ills to the gut wrenching realization that the system is now your hope. The system. The grinding inefficient health care system fronted by people a bit too friendly for the circumstances in which you find yourself. A system where an overwhelming number of women who don't appear to be fag hags are talking to you like you are a young gay boy they want to take out dancing for the first time. Very sweet, and even sometimes soothing, with a serious undertone of creepy.
The system must have paperwork filled out. The system must have each question answered. The system must know factoids and opinions you possess of yourself written on pages that are as cheap looking as 1970's mimeographs. You must report your drug use! You will discuss your past and present conditions! (Even though you suspect one call to the NSF would straighten all of this out for anybody who cared to ask and would totally spare you the continued, duplicate, effort.)
You duplicate everything, and you seek opinions everywhere, and enter the circle at the same point at which you previously exited, making no progress and discerning no consensus. You have tests, which to know the results of, you often have to aggress against the lassitude and greed of the system to know you better than you know yourself--"oh, those results! I thought someone had given them to you!" Uh, no, because you're the only one who has them....
Then too, at the center of the system, is the General Practitioner whom you've seen for x number of years, with whom everyone claims to desire a chat, and no one initiates one. For whom everyone claims to be preparing reports which your doctor will never get. To whom each test result is cc'd though it would be a shock for them to appear.
This is the start
of something a couple of people have urged me to do--the boyfriend, because it is cathartic and useful and a former boyfriend, because I'll be bored on disability while I'm recovering and will need productive outlets--both of whom are correct, and motivated by love, and concern, and the desire we all share to see something good come from losing my tongue, perhaps my original jaw, probably some teeth, the ability to eat peanut butter from the jar, the taste that tells me liver is shit food to eat, the extraordinarily loud way I say sarcastic things about people, the fact that my voice carries through walls, the love I have for caramels, the idea that feeding tubes and trach tubes are just evidence of giving up, the horror at losing my hair, or burns on my face and throat from a hot fucked up tube of radiation, the idea that I'm invincible, which I am, but only in my dreams.
This, my friends, is pure cancer buzzkill. I hope I can keep it up.
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