It's Sunday in Bloomington, Indiana. After a few days under the evil spell of a late Spring cold front, we may be closer to normal weather today. I for one could not be happier. I used to be a big fan of Winter, actually--dry, cold, slate grey skies, the lead color of the trees, a snow crunch under the feet as the dogs and I went to the park...heaven. That was another lifetime, another 40 pounds, a lot more muscle, a lot less pharmaceuticals ago. Now, digging up weeds wearing my floppy old man hat in 80+ degree heat is more to my liking. I, who derided snowbirds, may one day rue the fact that I'm not one.
Given that it's early, sort of, I'm goofing on Facebook and reading the New York Times online and avoiding doing anything of real value to the world. My headphones are on, Pandora is playing my Roisin Murphy channel, and I'm truly gearing up to clean up my bedroom, and later to plant some butterfly weed, and perhaps mow...but first, I'm going to have a can of TwoCal. And of course some more tunes. And an Ensure...and some more paper.
Yes, deadly procrastination. As I come back more to life, I recognize that I need to hold myself to the regimentation expected of a more typical modus operandi. That to claim goals, to hold them out as evidence of my worthiness to participate, I actually have to try to accomplish them, and accomplishing them takes discipline and a higher order of regimentation. It's wonderful to splash in the kiddie pool at age 53, I freely admit. As much as it frustrates me, I also find delight in never checking the clock during the day (I typically only make certain I haven't missed making coffee around 5 and to check how long it will be until Wheel of Fortune is on--seriously, it's that bad).
Often enough, my form of regimentation is a response to the animal urges of my body--nap at 10AM? Sure! Extra Ensure at 4pm? No problem, precious. So I envision not so much a fascist dictatorship of time management but the ability and the desire to say "NO" to some of my whims--that nap is ruining the flow of reading a book, studying French or Danish, working in the yard, cleaning the house, finding a job.
And those are all things on my list of to-dos that aren't getting done with the artful grace I envisioned of them in the past few months. I'm not practicing putting sentences together in Danish, I am ignoring my special French emails, and I seem to have hit a patch in "The Bully Pulpit" by Doris Kearns Goodwin that is inexpressibly boring. I need, I know, a strict machine to push my roller coaster car towards the next valley in preparation for the next hill.
There's a great argument to be made that I've only recently and incompletely emerged into Survival Mode, that for a period of time that feels like a decade, I've been told I'm dying. I've earned the goof time I'm having, and I've earned the ability to act as I wish to induce the further healing a satisfied, buddhistic and self indulgent Mark could experience. It's tempting to agree with that. I'd like to but....
Having been without my normal self for what seems like a lifetime, I want some of that back--I want to read my Denise Duhamel poetry books that I bought--when? a year ago, no, more--and then write her yet another fan email (seriously, "Mille et Cent Sentiments" just destroyed me). I want to want to write a grammatically perfect French sentence effortlessly and actually choose the correct verb case and form for each verb without picking up an ungainly Baedecker for the Foreign Language Challenged.
At my back, I now always hear Time's winged chariot scurrying near. And as quickly as my strict machine can accelerate my clown car on rails, it can brake again. I no longer have the luxury to think that I'm exempt from my own expectations. Mark is back in charge, and he still wants to conjugate "etre" and "avoir" from crystalline memory.
Then, there is this--a moment where I talk, and where I connect, and where I still get to communicate, express myself as normal and appreciate where I've been and where I'm going. I keep telling myself that I should wrap this blog project up, but then I think of how much I would miss it, and how much I've yet to tell you. I feel like I can't get inside cancer and make you truly understand how transforming it is, both good and bad. It's as if I were a Leatherback turtle and I was attempting to explain what it is to emerge from a sand nest in the dark and dart toward an ocean where--if I make it there--the odds are firmly stacked against me.
The turtle is too focused on just the facts ahead--yards of beach, swimming out against the tide, avoiding an ocean full of wild life that eats without discrimination. I am too focused on losing functions and not upon the wild life that has been eating at me without discrimination. These days I think of the two little points, centimeter here, bit more than a centimeter there, that sound so small, and yet sit large on my outlook--how many milliions of robot killer cells await in that gashes left in me? how long before it's their time to triumph again?
This is not over, of course it's not. This blog, me, the cancer--we're a trio seeking a wizard, one of us needing a heart, one of us needing a brain, one of us needing to learn to love and forgive. Myself, most of all, for failing at life, for not being able to live without cancer. That there was a hidden beam in me, rotten at its core, that collapsed one day and left me roofless and exposed. That my strict machine is sputtering upon restart, not understanding that I'm a bit hysterical that it work perfectly upon command, that our old life be better implanted in this imperfect body.
Ah, that old life! To be truthful, I'm not certain it ever existed. I think I always simply longed. For efficiency, an effortless mastery that came of the well regulated self. Not the dreamer, who told Denise that her poem changed him, or the devil who hated himself for no real reason whatsoever, merely that he was not red enough, angry enough, snappish enough.
Yes, come to think of it, this music and that Ensure are sounding better and better...
Sunday, May 18, 2014
Saturday, May 17, 2014
It isn't pain, it's change
For the past two nights, I've been unable to sleep, so I sleep during the day when fatigue sets in, back on my upside down schedule. I'm considering trying to stay awake today all day, in hopes that fatigue matches, say, an 11pm bedtime. I'd like to push reset to normal.
I am, I think, just the victim of the Spring phlegm slide, which is gross, and trust me I wouldn't mention it if it wasn't real and germane to the topic. I don't process this like you normals, of course, so its presence in my life is noisome and occasionally scary. I hate feeling like I'm choking and realizing that--if I am--I have very few options to prevent it. Sudafed has been clearning my nose, but they've not yet made the pill that clears a clogged up throat.
I did though realize an important fact in the midst of this blockage and drainage crisis--it's been at least two weeks since I took any pain medicine. The morphine elixir and the lortab elixir are milling about the cupboard, bored. I've forgotten to change my fentanyl patch because I may not need it so much anymore.
I want to celebrate this, but such a celebration could be short lived. My chin is now further south than it's been before, my lower lip has an accordion fold that's new--my skin feels tighter over the upper teeth I have left--how long until that rubs the wrong way and drives me batshit crazy? Honestly, I don't know--am I projecting a pain that may not come? Possibly. Do I really believe that possibility? no.
I've found that in a typical doctor's visit, you will hear X number of possibly good outcomes and X number of possibly bad ones. The variable is contained within your situation. Up to this point, my condition was pretty bad so my X was a fairly high number, say 4 or 5 each. You will notice, if you ascend to this exalted layer of the healthcare system, that the good things the doctor predicts rarely come true; they are too subject to further variations upon their delicate positive status. Note, though, that the bad ones nearly always come true, in a fair flush of health and agency, and it's always as bad as predicted.
Perhaps negativity does sell more stories, and the dramatics of medicine simply emphasize a winning hand. Or decline is simply easier to chart than upswing--more definite and certain of foot. Or cancer is just the buzzkill I've called it all along, subject to the negative far more than the positive--or a combination of all these possible factors.
Simply be prepared: forewarned, forearmed.
But, dropping out of one medicine pool is not a bad thing whatsoever--particularly when that pool includes opiates, and may dull one with the certainty that they help one too. I am a swimmer in the pool of toxicity--it's not like I need to add to my lack of buoyancy in the water.
At my last visit with Dr. Dayton, he hinted at the possibility that I'll be given a chemo holidy in the indeterminate future. That would be another pin knocked over in the "return my blood supply to actual blood instead of half pharmaceuticals. No doubt Anthem would enjoy a few weeks without a weekly bill of $6800., We could all use a breather, and not least my veins which are a bit weary of the weekly sticks.
So it's not pain, it's change. I'm growing up as a cancer patient. I'll cusping on my first "remission" (I'll never really be cancer free they tell me; but cancerless enough for a break), I've beaten expectations, I'm loosening myself from painkillers with no doctor pressuring me to do so. I may be nearly Junior year at Cancer U, after all.
Admittedly I'm still fixated on mortality. i'm still polling my friends to find out what defines a "good" person. I am not sitting by the door waiting for the bell, I'm defining space and tasks my own way, with no outer reference. I'm not even cooking much for Charles who has his own plans for his diet. But I am not wondering how tomorrow arrives, and I'm meeting it less often with my bedroom light on. Another reason that a good night's sleep is just the change I need.
Thursday, May 15, 2014
Waiting for 150
It's 2am in Bloomington. In my neighborhood it's usually very quiet at 2am, even more so this time because the academic year is done, so any student renters aren't driving home from the bars, there are no car door sounds.
I am upside down right now--I slept most of the day today, for no particular reason, but the sleep felt good, and right. I'd wake every few hours, change the tissue that sops my mouth, pee, and go back to sleep. I do this in intervals under 4:30pm, then I got up and made some coffee for Charles and me.
After a few days of mid-eighties and humdity, we hit a bump and declined to low sixties and rain; it feels cold and it feels wet to me. I'm in bed in my turkish towel bathrobe under the covers. I just had a can of cold Perrier water and it's given me the chills. When you shoot cold liquid directly into the stomach it has that effect, much as coffee can make me instantly hot. There's not much mitigation between tube and stomach.
Mitigation, in fact, is something I live without--
10:28am
I forced myself to work on sleeping as I typed that line about mitigation--perfectly true of course. I tend to live out on angles and edges of treatments I've had--hole in the neck, breathing through a tube, eating through another, the bad effects of new drugs.
Oh yes, new drugs.
Bolstering my immune response will require a combination of antibiotics. They may be the drugs that are bolting my behind to the toilet. Maybe it's the other combo that is keeping my system in check; I don't know. All I know is that my entire life has the consistency of TwoCal HN: high calorie and protein dense nutrition! Flavor: butter pecan.
In defense of butter pecan, it's less offensive than vanilla, and I'm supposed to have four of these per day. Less offensive x 4 is a lot less offensive, overall. I often follow these with an Ensure Complete--at least two per day, chocolate flavored--and that totals 2700 calories. I then get to 3000 usually with an Odwalla I've bought, a Boltinghouse Protein drink, an Ensure Immune health that I have (also chocolate flavored)
I have tried to be compliant with that 3000 calorie figure because attaining it has paid off. In January, I averaged around 125 pounds. Today, I average betwwen 137-139, on my digital scale in my underwear. This is a great triumph of weight gain by force, and perhaps a great triumph of Two Cal over my old hated vanilla ass crack Nutren. To be clear, ass crack is not part of the name of that product, just what I call it.
So, I figure if I keep trying, I might hit 140 consistently, very soon. That would set me up to say that my goal of 150 might be attainable by the end of the year. 150! My god, I'll be a blimp compared to my January figure! I'll need new jeans, again, and some of my old sweaters might not hang on me like I'm a display wire in a retail store.
This Spring I've dug out 5 flower beds that were overrun with weeds and grasses--on my hands and knees, pulling clods that I spaded and working the roots out of the clods, smacking them with my fist (clay soil, very bad), breaking them up as best I could. Being 137 helped, I think--there was more of me there to do the work, more muscle, more desire. Another ten pounds, what could I accomplish?
I mowed the front yard one time recently with the grass catcher attached, and I've mowed the front and back without the grass catcher, pausing often to catch my breath. Would ten more pounds make the mower an easier push? The whole yard with the grass catcher? Possibly. 150 is the weight that I arbitrarily dreamed of last year while my weight stubbornly didn't budge. I wondered how I woiuld make it there when what I ate was making me gag.
I've been fooled by goals before--swallowing was taken away as an option, speaking disappered--and I've held 150 out as a gateway to a normalcy that will never happen for me. No hamburgers are waiting on the other side of that number, and no recitation of the Gettysburg Address, no simple conversation with a friend. I've had to rethink my goals in terms of what is: 150 is just a number but so is Christmas, viewed as a date. Like anything, there's nothing wrong in looking forward to it, as long as you have a reasonable view of what it takes to get there, and what you expect out of it.
So, at 150, I can help with shoveling snow better. I may be back at work at 150. I may be before that. I'll find old clothes I have here more appealing. I'll feel a sense of satisfaction in raising my weight by 25 pounds over a year.
I have taken all the sod tops with clay dirt clinging to them, the weeds, the roots, the spare chunks of lawn that wouldn't deracinate and hauled them, load by load, to the backyard to build up the expansion of my shade garden. I've been putting lawn clippings, old pampas grass, sod clods, leaves, tree branches in one great pile over an area around the maple tree, to build up a raised bed that would support hostas and ferns, bleeding hearts and coral bells.
Bleeding hearts and coral bells, indeed!
I am upside down right now--I slept most of the day today, for no particular reason, but the sleep felt good, and right. I'd wake every few hours, change the tissue that sops my mouth, pee, and go back to sleep. I do this in intervals under 4:30pm, then I got up and made some coffee for Charles and me.
After a few days of mid-eighties and humdity, we hit a bump and declined to low sixties and rain; it feels cold and it feels wet to me. I'm in bed in my turkish towel bathrobe under the covers. I just had a can of cold Perrier water and it's given me the chills. When you shoot cold liquid directly into the stomach it has that effect, much as coffee can make me instantly hot. There's not much mitigation between tube and stomach.
Mitigation, in fact, is something I live without--
10:28am
I forced myself to work on sleeping as I typed that line about mitigation--perfectly true of course. I tend to live out on angles and edges of treatments I've had--hole in the neck, breathing through a tube, eating through another, the bad effects of new drugs.
Oh yes, new drugs.
Bolstering my immune response will require a combination of antibiotics. They may be the drugs that are bolting my behind to the toilet. Maybe it's the other combo that is keeping my system in check; I don't know. All I know is that my entire life has the consistency of TwoCal HN: high calorie and protein dense nutrition! Flavor: butter pecan.
In defense of butter pecan, it's less offensive than vanilla, and I'm supposed to have four of these per day. Less offensive x 4 is a lot less offensive, overall. I often follow these with an Ensure Complete--at least two per day, chocolate flavored--and that totals 2700 calories. I then get to 3000 usually with an Odwalla I've bought, a Boltinghouse Protein drink, an Ensure Immune health that I have (also chocolate flavored)
I have tried to be compliant with that 3000 calorie figure because attaining it has paid off. In January, I averaged around 125 pounds. Today, I average betwwen 137-139, on my digital scale in my underwear. This is a great triumph of weight gain by force, and perhaps a great triumph of Two Cal over my old hated vanilla ass crack Nutren. To be clear, ass crack is not part of the name of that product, just what I call it.
So, I figure if I keep trying, I might hit 140 consistently, very soon. That would set me up to say that my goal of 150 might be attainable by the end of the year. 150! My god, I'll be a blimp compared to my January figure! I'll need new jeans, again, and some of my old sweaters might not hang on me like I'm a display wire in a retail store.
This Spring I've dug out 5 flower beds that were overrun with weeds and grasses--on my hands and knees, pulling clods that I spaded and working the roots out of the clods, smacking them with my fist (clay soil, very bad), breaking them up as best I could. Being 137 helped, I think--there was more of me there to do the work, more muscle, more desire. Another ten pounds, what could I accomplish?
I mowed the front yard one time recently with the grass catcher attached, and I've mowed the front and back without the grass catcher, pausing often to catch my breath. Would ten more pounds make the mower an easier push? The whole yard with the grass catcher? Possibly. 150 is the weight that I arbitrarily dreamed of last year while my weight stubbornly didn't budge. I wondered how I woiuld make it there when what I ate was making me gag.
I've been fooled by goals before--swallowing was taken away as an option, speaking disappered--and I've held 150 out as a gateway to a normalcy that will never happen for me. No hamburgers are waiting on the other side of that number, and no recitation of the Gettysburg Address, no simple conversation with a friend. I've had to rethink my goals in terms of what is: 150 is just a number but so is Christmas, viewed as a date. Like anything, there's nothing wrong in looking forward to it, as long as you have a reasonable view of what it takes to get there, and what you expect out of it.
So, at 150, I can help with shoveling snow better. I may be back at work at 150. I may be before that. I'll find old clothes I have here more appealing. I'll feel a sense of satisfaction in raising my weight by 25 pounds over a year.
I have taken all the sod tops with clay dirt clinging to them, the weeds, the roots, the spare chunks of lawn that wouldn't deracinate and hauled them, load by load, to the backyard to build up the expansion of my shade garden. I've been putting lawn clippings, old pampas grass, sod clods, leaves, tree branches in one great pile over an area around the maple tree, to build up a raised bed that would support hostas and ferns, bleeding hearts and coral bells.
Bleeding hearts and coral bells, indeed!
Saturday, May 10, 2014
Coming Around, Again
They gave me a drug that slowed the healing of wounds
--Adrienne Rich, "Valediction Forbidding Mourning"
It was always a curious line to me, in a poem that I loved. I couldn't see past the implied reality--why, I asked myself, would anyone do that? How would it be to anyone's advantage to keep a wound open longer than necessary?
Of course reality has nothing to do with poetry, or not normally--this is the stuff of imaginary gardens with real toads, according to Marianne Moore. But I've found this line repeated in my mind the past couple of days, because I've seen that it does, in fact, have reality to it.
There are two timelines that I bet every cancer patient is given, I certainly received both--one is a timeline of a return to normal, the other is a timeline of life expectancy. For the former, I was on a six month timeline at first, which degenerated to maybe next year which changed to never. For the second, I have been on a freak show ride which started with a few months, and changed into hard to tell, which become 15-24 months total, from surgery, which just Thursday got reset to who knows? I now, I think, have the same daily risk of being hit by an errant bus as I do of dying from cancer. Well, maybe not, but let me have my moment.
Survivability is coming around again, and I haven't prepared for it as well as you might suspect. I have tried to talk and walk a good game of fighting and staying positive--and I've done pretty decently at it--but behind all the talking and walking I've kept a narrative of failure, too. I accepted as I beat my chest that the specialists were correct and I was dancing on borrowed time. It wasn't that I needed to get my house in order; I own little of any contention, there's not any money sitting around, my legal claims to community property would die with me.
All the preparation was my own. To be ready for pain, a last breath, the idea that there's nothing more to life versus the idea of reincarnation (or, as I call it, my hope of peanut butter again), versus the idea that string theory offers us of multiple realities coinciding, that I might jump from this one to another as I left my earthly form. I have, in all ways, tried to accept my own advice to be ready to live and die at the same time.
But here I am--and after a small bit of hullaballoo I came home on Thursday and took a nap. My dreams were of living, the scapes of the dream were bright and long, I woke to pee and promptly went back to sleep because these dreams were so interesting, and as it often is, I wasn't wearing a surgical mask, I walked, talked and ate normally.
Even should I survive as long as I often threaten, normal is not happening. Too much function has been lost for me to eat, too much has transpired to allow me to speak clearly, if at all--there's still talk of the voice box going whenever surgery 2 comes around. One timeline is pretty clearly accurate.
I've been trying to decide if I can live another twenty years eating only these liquid nutrition things, but i don't know if that is all that will happen. Might I, at some point, get a larger tube aperture? Might mashed potatoes make it down there more easily? could meatloaf happen again? Maybe. Then too perhaps the food will change--head and neck cancers are on a violent upswing, and there will be more of me, like it or not. A market of survivors who hate having everything taste like vanilla ass crack might encourage some creative thinking on the producer's part. Shepherd's Pie? why not.
I went to the Farmer's Market this morning. I really want to find some asclepias for my garden--butterfly weed or milkweed, but I want the orange colored flowers. In the last two years you couldn't go anywhere but trip over flats of these plants--and this year, so far, forget it. I saw some really horrible and overpriced starts at a greenhouse, but I was certain I would see them downtown.
Walking through the vendors' stands, I was aware of a lot of eyes checking me out, I knew I'd get the stares--but this is not the return to normal, this is the new normal. I barely missed a step. I saw a guy there whom I knew as an undergraduate; he didn't know me. This is not normal, this is the new normal. The air is wet and a bit cool today, I could feel my lungs working harder, and this too is the new normal.
I have gotten older than my actual age because they gave a drug that slowed the healing of wounds--in fact, I'm still getting them. The doses of erbitux and methtrexate that truly lead to a wonderful CT scan result also keep surface wounds harder to close, also encourage what is not fixable to remain unfixable in fissures, the body works a bit harder to do the normal things.
I have to face possibly living longer than I suspected just a couple of weeks ago, and as my thinking adjusts, I now have to wonder about other things--working again, living again, dealing every day with other people again. I've been able to isolate myself and innoculate myself at will against curiousity, blatant staring, hostility to my appearance, I'm often able to not think of myself as disabled when I'm alone.
So it may be now that I have to think of living, and being disabled, and making normal big enough to take in both of those realities. That not every drug heals wounds, and not on a schedule that makes sense.
And this life that is slowly scabbing over these wounds, it will have to be a life I live for myself. Not one predicated around romance, not one where I distract from my need to grow by referring to someone else. Not one where a line of poetry takes the place of conversation and discovery, even if they have to happen with a voice program on Ipad instead of the spontaneity of me blurting out whatever is passing through my head at the moment.
It's coming around again. Life. Messy, bloody, ill-healed and incredible. Anything but normal.
--Adrienne Rich, "Valediction Forbidding Mourning"
It was always a curious line to me, in a poem that I loved. I couldn't see past the implied reality--why, I asked myself, would anyone do that? How would it be to anyone's advantage to keep a wound open longer than necessary?
Of course reality has nothing to do with poetry, or not normally--this is the stuff of imaginary gardens with real toads, according to Marianne Moore. But I've found this line repeated in my mind the past couple of days, because I've seen that it does, in fact, have reality to it.
There are two timelines that I bet every cancer patient is given, I certainly received both--one is a timeline of a return to normal, the other is a timeline of life expectancy. For the former, I was on a six month timeline at first, which degenerated to maybe next year which changed to never. For the second, I have been on a freak show ride which started with a few months, and changed into hard to tell, which become 15-24 months total, from surgery, which just Thursday got reset to who knows? I now, I think, have the same daily risk of being hit by an errant bus as I do of dying from cancer. Well, maybe not, but let me have my moment.
Survivability is coming around again, and I haven't prepared for it as well as you might suspect. I have tried to talk and walk a good game of fighting and staying positive--and I've done pretty decently at it--but behind all the talking and walking I've kept a narrative of failure, too. I accepted as I beat my chest that the specialists were correct and I was dancing on borrowed time. It wasn't that I needed to get my house in order; I own little of any contention, there's not any money sitting around, my legal claims to community property would die with me.
All the preparation was my own. To be ready for pain, a last breath, the idea that there's nothing more to life versus the idea of reincarnation (or, as I call it, my hope of peanut butter again), versus the idea that string theory offers us of multiple realities coinciding, that I might jump from this one to another as I left my earthly form. I have, in all ways, tried to accept my own advice to be ready to live and die at the same time.
But here I am--and after a small bit of hullaballoo I came home on Thursday and took a nap. My dreams were of living, the scapes of the dream were bright and long, I woke to pee and promptly went back to sleep because these dreams were so interesting, and as it often is, I wasn't wearing a surgical mask, I walked, talked and ate normally.
Even should I survive as long as I often threaten, normal is not happening. Too much function has been lost for me to eat, too much has transpired to allow me to speak clearly, if at all--there's still talk of the voice box going whenever surgery 2 comes around. One timeline is pretty clearly accurate.
I've been trying to decide if I can live another twenty years eating only these liquid nutrition things, but i don't know if that is all that will happen. Might I, at some point, get a larger tube aperture? Might mashed potatoes make it down there more easily? could meatloaf happen again? Maybe. Then too perhaps the food will change--head and neck cancers are on a violent upswing, and there will be more of me, like it or not. A market of survivors who hate having everything taste like vanilla ass crack might encourage some creative thinking on the producer's part. Shepherd's Pie? why not.
I went to the Farmer's Market this morning. I really want to find some asclepias for my garden--butterfly weed or milkweed, but I want the orange colored flowers. In the last two years you couldn't go anywhere but trip over flats of these plants--and this year, so far, forget it. I saw some really horrible and overpriced starts at a greenhouse, but I was certain I would see them downtown.
Walking through the vendors' stands, I was aware of a lot of eyes checking me out, I knew I'd get the stares--but this is not the return to normal, this is the new normal. I barely missed a step. I saw a guy there whom I knew as an undergraduate; he didn't know me. This is not normal, this is the new normal. The air is wet and a bit cool today, I could feel my lungs working harder, and this too is the new normal.
I have gotten older than my actual age because they gave a drug that slowed the healing of wounds--in fact, I'm still getting them. The doses of erbitux and methtrexate that truly lead to a wonderful CT scan result also keep surface wounds harder to close, also encourage what is not fixable to remain unfixable in fissures, the body works a bit harder to do the normal things.
I have to face possibly living longer than I suspected just a couple of weeks ago, and as my thinking adjusts, I now have to wonder about other things--working again, living again, dealing every day with other people again. I've been able to isolate myself and innoculate myself at will against curiousity, blatant staring, hostility to my appearance, I'm often able to not think of myself as disabled when I'm alone.
So it may be now that I have to think of living, and being disabled, and making normal big enough to take in both of those realities. That not every drug heals wounds, and not on a schedule that makes sense.
And this life that is slowly scabbing over these wounds, it will have to be a life I live for myself. Not one predicated around romance, not one where I distract from my need to grow by referring to someone else. Not one where a line of poetry takes the place of conversation and discovery, even if they have to happen with a voice program on Ipad instead of the spontaneity of me blurting out whatever is passing through my head at the moment.
It's coming around again. Life. Messy, bloody, ill-healed and incredible. Anything but normal.
Thursday, May 8, 2014
Midterms, Cancer U: The Importance of Being Awesome
This morning, 2:30am, I was wondering. In the middle of what I call a snot slide, my seasonal allergies sending more crap down my throat post nasally than I can handle. This feels like choking, it's impossible to ignore or sleep through. I was wondering; am I better? is this necessary? can this possibly be normal?
Today I've had my date with the doctor and I'm sitting in the infusion center waiting for my blood work to confirm that I'm healthy enough for some more toxicity this week. My midterm grades awaited me here, the answer to those early morning questions, the bonus questions of my cancer tests.
So, without further ado, the scan: I am awesome! Everything I hoped that I was feeling correctly is indeed true--no spread of cancer, no sign of some of the earlier spread, and this applies to the head, neck, and chest. There are two spots, one on each side, that will bear watching--two little centimeter sorts of tumors--a bit less than an inch on the left, a bit more than an inch on the right. But, for someone who's supposed to be half dead by now, this midterm grade is A+. It's nice to see a doctor smile, and nicer still when he says: I love to see the experts proved wrong.
And those bonus questions? Ah, seasonal allergies--they aren't fun for the fully functional, and just less so for me. I don't clean out as well as would be helpful--but here again the doctor and I agree: I don't want another pill! So, until it's proven I can't do without a daily Allegra sort of thing, I will avoid it. I'll take my sudafed on demand and hope it proves at least sufficient to soothing my anxiety. This year's season of high tide looks to be particularly galling, and I can survive this one, I can survive any.
As far as the joy of proving experts wrong, I doubt I have to tell you that's exactly what I think, too. I've been alternately horrified and pissed off that those experts might be right--but I suppose that's been apparent throughout this narrative. I kept getting clear signs, personally, that things were better, and kept hearing personally how things were likely worse. Maybe this means I'll get my prosthetics, maybe this means that Surgery 2, that delayed bit of future fun, will happen this Autumn. It's odd to look forward to surgery, I know, but I'd like to get this one out of the way.
I know this is a short update, but they've just started my benadryl drip in anticipation of the erbitux and methotrexate. One can't tell it in this room, but the sun is out in Bloomington. The day started warm today. Once today's drip is done, I have a nap calling me. After that, a garden calling my name. Then a future tapping me on the shoulder, and tsking me for ever believing anything other than it was there, available, and mine for the asking.
Today I've had my date with the doctor and I'm sitting in the infusion center waiting for my blood work to confirm that I'm healthy enough for some more toxicity this week. My midterm grades awaited me here, the answer to those early morning questions, the bonus questions of my cancer tests.
So, without further ado, the scan: I am awesome! Everything I hoped that I was feeling correctly is indeed true--no spread of cancer, no sign of some of the earlier spread, and this applies to the head, neck, and chest. There are two spots, one on each side, that will bear watching--two little centimeter sorts of tumors--a bit less than an inch on the left, a bit more than an inch on the right. But, for someone who's supposed to be half dead by now, this midterm grade is A+. It's nice to see a doctor smile, and nicer still when he says: I love to see the experts proved wrong.
And those bonus questions? Ah, seasonal allergies--they aren't fun for the fully functional, and just less so for me. I don't clean out as well as would be helpful--but here again the doctor and I agree: I don't want another pill! So, until it's proven I can't do without a daily Allegra sort of thing, I will avoid it. I'll take my sudafed on demand and hope it proves at least sufficient to soothing my anxiety. This year's season of high tide looks to be particularly galling, and I can survive this one, I can survive any.
As far as the joy of proving experts wrong, I doubt I have to tell you that's exactly what I think, too. I've been alternately horrified and pissed off that those experts might be right--but I suppose that's been apparent throughout this narrative. I kept getting clear signs, personally, that things were better, and kept hearing personally how things were likely worse. Maybe this means I'll get my prosthetics, maybe this means that Surgery 2, that delayed bit of future fun, will happen this Autumn. It's odd to look forward to surgery, I know, but I'd like to get this one out of the way.
I know this is a short update, but they've just started my benadryl drip in anticipation of the erbitux and methotrexate. One can't tell it in this room, but the sun is out in Bloomington. The day started warm today. Once today's drip is done, I have a nap calling me. After that, a garden calling my name. Then a future tapping me on the shoulder, and tsking me for ever believing anything other than it was there, available, and mine for the asking.
Wednesday, May 7, 2014
Midterms, Cancer U, Sophomore Year: Part I
Hard to believe but it's been 14 months since I had my big surgery in Indianapolis and jump started my slide down Function Mountain, past Lose Your Voice Bend and Never Eat Again Gulch. I've failed basic tests like jealousy of other cancers--seriously, did I have to get the one that is only gaining in popularity thus doesn't have good treatment options?--and the sorry for myself traps that turn 1am into a never ending dark night of the soul. It happens.
This period, though, feels like Midterms of Sophomore year--my scan results should be available to me tomorrow, but I've heard about other blood tests I did a bit earlier, and the picture is mixed. My immune system is crashing, but that's not unheard of with the sort of continual astringencies that are dripped into me weekly. Still, I wish it wasn't, because I want an unequivocal excellent written across this evaluation period.
I want the fact that I mowed the front yard, badly, to count; the gardening that I'm crowing about every 5 seconds on Facebook, I want that to count more too than the fact of how many T cells I no longer have. I want my attitude to overcome the two new antibiotics I'm being put on until more testing shows I bounce back, that I still can. My attitude is normally pretty decent these days, though last night at--yes--1am I did wonder if I needed to watch that episode of The Good Wife in order to sleep (Alicia does it for me, what can I say?), or if my late night episode was another way to admit I'm worried without admitting it out loud. Of course I am...
Skidding down Function Mountain I can only say is harrowing--what next? What part of me dissipates into thin air so fast I hardly know what happened? You see 14 months ago I thought surgery was how things got better. I hadn't been in a hospital at that point since my bout of pneumonia at 6; I had managed 46 years without anything cut up or out, with only the small losses one expects to encounter between 6 and 46--a mellower sort of energy that powers the body along, less of a taste for Cap'n Crunch, a disdain for tree climbing.
The chimera of 1am is the monster that my lone bedroom light fights away--why won't it simply be defeated? Why, at 12:45, can't I experience a burst of self satisfaction? What comes in the night is, probably, what I push away during the day. As in all physics, the energy of the negative that I suppress in my daily truck with existence is not lost, it converts to another form. As my quiet life grows deaf-quiet in the AM, so does my ability to fear grow, and my imagination inflate negatively, and often then I see myself dying, alone in a room, with no ability to alert anyone else.
I do, as the well oiled rails of my cancer careen down Function Mountain, repeat good things to myself--I have survived, I show a determination to thrive, I accomplished A or B or C or X, I felt this pang or that twinge of empathy beyond my own problems, I saw good in how I reacted.
Recently I was told that indeed I've deserved everything that has happened to me--the hows and whys of reading that and why I received it is beside the point--I actively wonder if dharma has brought karma to my doorstep. Look, I know I've broken nearly every commandment of good behavior at least once in my life (no murder though--in fact nothing in the stratosphere of serious crime), but those things that should have been easy for me not to do: I've lied, I've cheated, I've stole the liftable items and the perfect moments that were never mine to claim. At 10am, I forgive myself and note that I'm not unique amongst the population; at 1am, such false equivalency is just an arrow to the heart of deviancy from a boy who was never good at archery.
Sometimes you go into a Midterm with confidence and vigor. In my sophomore year at IU I aced Shakespeare by just crazy reading, my formerly excellent memory, my love of the pull quotes from each play. At 10am, I get off on As You Like It; at 1am, I commit to The Tempest. I've had classes where I finished the test first and walked out knowing I aced--and I remember not so much the classes as the way it felt to walk under the trees in Dunn Woods and go buy a slice of pizza to celebrate.
In the first part of my Midterms, I didn't really fail anything. Other parts of the tests they ran show my system isn't infected, even if my immune system is looking tattered: for a guy with a hole in my throat, a trach tube, an unworkable mouth--all great pathways to stray infections--I've succumbed to none. There is a steel in me that is flexible enough to not be apparent and not be absent at the same time. Some of the luck with which I went on a 40 year hospital-less run in my life is still around. The fact that my family is a genetic nightmare of inherited weaknesses, one of which is apparently oral cancer, isn't my fault. I'm not being paid back for being an asshole, I just at the ass end of a peculiar X meeting a peculiar Y which has resulted in some of my siblings having a weak heart, some prone to weight, a couple of us as I am now skidding on something that doesn't feel controlled down a very steep incline.
I simply want it all. I want to arrest my slide in one elegant lifting of the runners off the ice of a twisting, turning, looping path. I simply want an answer that is unequivocal--Mark, you are getting better, here's all the proof you need. I want to drift off at, say, 11pm, maybe 11:30pm, and sleep until 6 or so.
When I turn around, I'd like it to be 1995, when I was 35 and living in Brooklyn Heights, and I felt occasionally good looking, even desirable on off weekends. I want to dance again as I did when going to the bar for Drag Night Wednesdays, Fridays and Saturdays, was how one could survive the boredom of being a bit too fabulous for Bloomington, circa '84 or '85. Those times, as close to unequivocal as I've ever been.
Tomorrow, I'll hear about part II of Midterms--the scan. I'll tune in her to tell you if my lungs are crowding with tumors or if the sled is taking a sideways turn, a busman's holiday through the tree line where there's more to see at a lesser speed toward dysfunctionality. It will be chemo day this week, too--something that in spite of the needle sticks and the hardening of this vein or that, I've come to enjoy for its zen and promise: You will pass this test, Mark, and even if you don't ace it, you have the rest of the semester to get the "A." You have a life in which to use this experience. The luge you can now ride like a professional, in a gold medal way, that once at the mountain's bottom, my friend, you have a ride to the top again.
This period, though, feels like Midterms of Sophomore year--my scan results should be available to me tomorrow, but I've heard about other blood tests I did a bit earlier, and the picture is mixed. My immune system is crashing, but that's not unheard of with the sort of continual astringencies that are dripped into me weekly. Still, I wish it wasn't, because I want an unequivocal excellent written across this evaluation period.
I want the fact that I mowed the front yard, badly, to count; the gardening that I'm crowing about every 5 seconds on Facebook, I want that to count more too than the fact of how many T cells I no longer have. I want my attitude to overcome the two new antibiotics I'm being put on until more testing shows I bounce back, that I still can. My attitude is normally pretty decent these days, though last night at--yes--1am I did wonder if I needed to watch that episode of The Good Wife in order to sleep (Alicia does it for me, what can I say?), or if my late night episode was another way to admit I'm worried without admitting it out loud. Of course I am...
Skidding down Function Mountain I can only say is harrowing--what next? What part of me dissipates into thin air so fast I hardly know what happened? You see 14 months ago I thought surgery was how things got better. I hadn't been in a hospital at that point since my bout of pneumonia at 6; I had managed 46 years without anything cut up or out, with only the small losses one expects to encounter between 6 and 46--a mellower sort of energy that powers the body along, less of a taste for Cap'n Crunch, a disdain for tree climbing.
The chimera of 1am is the monster that my lone bedroom light fights away--why won't it simply be defeated? Why, at 12:45, can't I experience a burst of self satisfaction? What comes in the night is, probably, what I push away during the day. As in all physics, the energy of the negative that I suppress in my daily truck with existence is not lost, it converts to another form. As my quiet life grows deaf-quiet in the AM, so does my ability to fear grow, and my imagination inflate negatively, and often then I see myself dying, alone in a room, with no ability to alert anyone else.
I do, as the well oiled rails of my cancer careen down Function Mountain, repeat good things to myself--I have survived, I show a determination to thrive, I accomplished A or B or C or X, I felt this pang or that twinge of empathy beyond my own problems, I saw good in how I reacted.
Recently I was told that indeed I've deserved everything that has happened to me--the hows and whys of reading that and why I received it is beside the point--I actively wonder if dharma has brought karma to my doorstep. Look, I know I've broken nearly every commandment of good behavior at least once in my life (no murder though--in fact nothing in the stratosphere of serious crime), but those things that should have been easy for me not to do: I've lied, I've cheated, I've stole the liftable items and the perfect moments that were never mine to claim. At 10am, I forgive myself and note that I'm not unique amongst the population; at 1am, such false equivalency is just an arrow to the heart of deviancy from a boy who was never good at archery.
Sometimes you go into a Midterm with confidence and vigor. In my sophomore year at IU I aced Shakespeare by just crazy reading, my formerly excellent memory, my love of the pull quotes from each play. At 10am, I get off on As You Like It; at 1am, I commit to The Tempest. I've had classes where I finished the test first and walked out knowing I aced--and I remember not so much the classes as the way it felt to walk under the trees in Dunn Woods and go buy a slice of pizza to celebrate.
In the first part of my Midterms, I didn't really fail anything. Other parts of the tests they ran show my system isn't infected, even if my immune system is looking tattered: for a guy with a hole in my throat, a trach tube, an unworkable mouth--all great pathways to stray infections--I've succumbed to none. There is a steel in me that is flexible enough to not be apparent and not be absent at the same time. Some of the luck with which I went on a 40 year hospital-less run in my life is still around. The fact that my family is a genetic nightmare of inherited weaknesses, one of which is apparently oral cancer, isn't my fault. I'm not being paid back for being an asshole, I just at the ass end of a peculiar X meeting a peculiar Y which has resulted in some of my siblings having a weak heart, some prone to weight, a couple of us as I am now skidding on something that doesn't feel controlled down a very steep incline.
I simply want it all. I want to arrest my slide in one elegant lifting of the runners off the ice of a twisting, turning, looping path. I simply want an answer that is unequivocal--Mark, you are getting better, here's all the proof you need. I want to drift off at, say, 11pm, maybe 11:30pm, and sleep until 6 or so.
When I turn around, I'd like it to be 1995, when I was 35 and living in Brooklyn Heights, and I felt occasionally good looking, even desirable on off weekends. I want to dance again as I did when going to the bar for Drag Night Wednesdays, Fridays and Saturdays, was how one could survive the boredom of being a bit too fabulous for Bloomington, circa '84 or '85. Those times, as close to unequivocal as I've ever been.
Tomorrow, I'll hear about part II of Midterms--the scan. I'll tune in her to tell you if my lungs are crowding with tumors or if the sled is taking a sideways turn, a busman's holiday through the tree line where there's more to see at a lesser speed toward dysfunctionality. It will be chemo day this week, too--something that in spite of the needle sticks and the hardening of this vein or that, I've come to enjoy for its zen and promise: You will pass this test, Mark, and even if you don't ace it, you have the rest of the semester to get the "A." You have a life in which to use this experience. The luge you can now ride like a professional, in a gold medal way, that once at the mountain's bottom, my friend, you have a ride to the top again.
Saturday, May 3, 2014
Pardon Me, Do I Know You?
It was part of my stealth movement to naturalize myself amongst Bloomington. I, my surgical mask, my fairly Fifty-ish prep clothes, we all showed up at another lecture on campus, this time sponsored by the Center on American and Global Security.
The Center is under the direction of my old boss from India Studies, and a fine scholar of the modern and contemporary Indian political and nuclear scene, Dr. Sumit Ganguly. I have enjoyed a few fine scotches, many intriguing discussions, some fantastic books, and great speakers through Dr. G's good graces. He's a person I've found sympatico to how I view the world, what I believe an educated man is, a leader.
I arranged to meet up with Charles on campus after his workday was over, given that this lecture started at 4:30pm. It was to be given on Boko Harem and the workings of Islamic Fundamentalism in Nigeria, particularly the northern section. Three speakers, twenty minutes each, time for Q & A.
This was the first time that I would encounter Dr. G. after not seeing him in person for a year--a bit longer, in fact. I had no expectations, although I hoped we would be glad to run into one another. And we would have been so, had he recognized me.
Sitting across the room I could actually see him attempting to figure out if I was who he thought I was...or who exactly I might be if I weren't. I have to admit I found this initially amusing. We're talking aboout a fellow who knows people worldwide and I never knew him to have difficulty with their names or identifying them, often in pithy phrases that summed up their careers, or characters, or work, fairly handily. Then of course this struck me--I truly am not the Mark he knew.
And how could I be? In my surgical mark, about 50 lbs lighter than he last knew me, my biceps gone, my shape distorted, my face only one third visible. I remembered the day I found a reflective surface, about the third day after my first surgery in March, 2013, when I looked at myself to discover I did not recognize the ghost looking back at me.
Until that time, that place, my mental image ruled--when I spoke to the nurses, I saw Mark of six months prior speaking, that was the face that laughed, not this beat up facsmilie. From that time there have been more changes, more distortions, and I've tried to make myself look in the mirror occasionally to face what he now looks like--and he doesn't at all look like that Mark.
Yet, here I am, it's me. The dissonance of new reality crashing into old perceptions, a problem as old as Daniel Dafoe, if not older.
I stopped falling into depression fairly quickly--I mean, honestly, if I fell apart at the slightest reminder that of what's happened to me I wouldn't have made it very far in this life. I am daily reminded; I am reminded by the kid who plays basketball across the street who gawks at me. I am reminded when I leave the house by strangers. I am reminded when I encounter old friends who know I'm coming, and still I see a cloud of "wow" across their face. And, above all, I am reminded that all of this is ok because I'm still here to take note of it.
Yes, I have crawled through some sticky crap to make it to that moment of not being recognized--that was a problem that had no power no register upon me. It merely meant that all these wounds I've taken have been serious, but not fatal. And, it pointed out to me that I have not naturalized myself in my old town quite yet. I have not become the inevitability I'll have to become so that less staring is done in my direction.
Small Indiana towns love their quirky residents--so perhaps I can be one of those. The guy who speaks with an Ipad and looks like a joke but isn't, really. The guy who attends lectures because his brain could use some food, because life is for learning, and you have to move forward no matter who, or what, tries to keep you from doing so.
Today I received a sheepish email from Dr. G., asking if that was me at the last lecture of the semester. I assured him, as I would you, that not knowing me straight off isn't really the worst thing that could happen; in fact, it's rather understandable. I too remember myself as the guy who loved his morning pushups and I remember that I had pecs, and I remember that my arms were two-thirds larger than they are now.
I'm told that my eyes are still blue, and still sparkle sometimes, usually when I'm smiling. It's the only way you'd know I'm amused--my mouth doesn't make that movement anymore, and in public, it's covered anyway. But I'm in here, I promise. I still think the things I used to say out loud, I'm still vulgar, though likely I am less mean than was normal. I save my disdain for those that really need it--those who flat out, open-mouthed stare at me like a circus freak. They shall, I'm utterly certain, inherit the Earth.
On Friday I had my newest CT scan. Later this week, the doctor will tell me how that looks. This one goes from mid head to lower belly, to see if the cancer that spread to my lungs has been arrested or not, if it has spread anywhere else, if it is growing, to see if I'm recognizable inside, if they know me.
I think they'll find I'm doing better than they suspect. I truly hope so. I need the surgeons in Indy to believe I've got a heavy shot at a longer lifespan so they might support me in obtaining Surgery 2, and afterwards, to be fitted with the prosthetics that will smooth out my appearance, that will make my Micheal Jackson surgical masks unnecessary. Right now, because they believe the cancer spread in my lungs is a sign of a shortened timeline, they are loathe to suggest anything that costs a lot of money.
I want them to know me, inside and out. How worth the cost I can be.
The Center is under the direction of my old boss from India Studies, and a fine scholar of the modern and contemporary Indian political and nuclear scene, Dr. Sumit Ganguly. I have enjoyed a few fine scotches, many intriguing discussions, some fantastic books, and great speakers through Dr. G's good graces. He's a person I've found sympatico to how I view the world, what I believe an educated man is, a leader.
I arranged to meet up with Charles on campus after his workday was over, given that this lecture started at 4:30pm. It was to be given on Boko Harem and the workings of Islamic Fundamentalism in Nigeria, particularly the northern section. Three speakers, twenty minutes each, time for Q & A.
This was the first time that I would encounter Dr. G. after not seeing him in person for a year--a bit longer, in fact. I had no expectations, although I hoped we would be glad to run into one another. And we would have been so, had he recognized me.
Sitting across the room I could actually see him attempting to figure out if I was who he thought I was...or who exactly I might be if I weren't. I have to admit I found this initially amusing. We're talking aboout a fellow who knows people worldwide and I never knew him to have difficulty with their names or identifying them, often in pithy phrases that summed up their careers, or characters, or work, fairly handily. Then of course this struck me--I truly am not the Mark he knew.
And how could I be? In my surgical mark, about 50 lbs lighter than he last knew me, my biceps gone, my shape distorted, my face only one third visible. I remembered the day I found a reflective surface, about the third day after my first surgery in March, 2013, when I looked at myself to discover I did not recognize the ghost looking back at me.
Until that time, that place, my mental image ruled--when I spoke to the nurses, I saw Mark of six months prior speaking, that was the face that laughed, not this beat up facsmilie. From that time there have been more changes, more distortions, and I've tried to make myself look in the mirror occasionally to face what he now looks like--and he doesn't at all look like that Mark.
Yet, here I am, it's me. The dissonance of new reality crashing into old perceptions, a problem as old as Daniel Dafoe, if not older.
I stopped falling into depression fairly quickly--I mean, honestly, if I fell apart at the slightest reminder that of what's happened to me I wouldn't have made it very far in this life. I am daily reminded; I am reminded by the kid who plays basketball across the street who gawks at me. I am reminded when I leave the house by strangers. I am reminded when I encounter old friends who know I'm coming, and still I see a cloud of "wow" across their face. And, above all, I am reminded that all of this is ok because I'm still here to take note of it.
Yes, I have crawled through some sticky crap to make it to that moment of not being recognized--that was a problem that had no power no register upon me. It merely meant that all these wounds I've taken have been serious, but not fatal. And, it pointed out to me that I have not naturalized myself in my old town quite yet. I have not become the inevitability I'll have to become so that less staring is done in my direction.
Small Indiana towns love their quirky residents--so perhaps I can be one of those. The guy who speaks with an Ipad and looks like a joke but isn't, really. The guy who attends lectures because his brain could use some food, because life is for learning, and you have to move forward no matter who, or what, tries to keep you from doing so.
Today I received a sheepish email from Dr. G., asking if that was me at the last lecture of the semester. I assured him, as I would you, that not knowing me straight off isn't really the worst thing that could happen; in fact, it's rather understandable. I too remember myself as the guy who loved his morning pushups and I remember that I had pecs, and I remember that my arms were two-thirds larger than they are now.
I'm told that my eyes are still blue, and still sparkle sometimes, usually when I'm smiling. It's the only way you'd know I'm amused--my mouth doesn't make that movement anymore, and in public, it's covered anyway. But I'm in here, I promise. I still think the things I used to say out loud, I'm still vulgar, though likely I am less mean than was normal. I save my disdain for those that really need it--those who flat out, open-mouthed stare at me like a circus freak. They shall, I'm utterly certain, inherit the Earth.
On Friday I had my newest CT scan. Later this week, the doctor will tell me how that looks. This one goes from mid head to lower belly, to see if the cancer that spread to my lungs has been arrested or not, if it has spread anywhere else, if it is growing, to see if I'm recognizable inside, if they know me.
I think they'll find I'm doing better than they suspect. I truly hope so. I need the surgeons in Indy to believe I've got a heavy shot at a longer lifespan so they might support me in obtaining Surgery 2, and afterwards, to be fitted with the prosthetics that will smooth out my appearance, that will make my Micheal Jackson surgical masks unnecessary. Right now, because they believe the cancer spread in my lungs is a sign of a shortened timeline, they are loathe to suggest anything that costs a lot of money.
I want them to know me, inside and out. How worth the cost I can be.
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