My last encounter with the health care system at its worst, Bloomington Hospital ER, is being counter-balanced today by my appointment with my oncologist.
I usually come with a list, sometimes an NYT article I've read, sometimes a myth I need busted. We laugh, we sing, we braid each other's hair...no, not really, but compared to sitting in an ER listening to people who don't know me opining upon my prognosis, it's great to be with someone who follows my case and can put things in perspective when that's exactly what I need.
Today, we poured scorn on the NP who frightened me about my lungs. There's no unspoken-of cancer or a tumor there that no one has mentioned to me. There was just the ill-formed judgement of an NP who needs to learn when to STFU. I did learn the price of pneumonia though--my right lung is now not a terribly useful thing, and it will take a while for the left to come completely back to normal. This explains why I'm winded doing simple things, and the fact that I'll have to baby myself a bit if I want to do anything physical in the Spring planting season of 2016.
This is not what I wanted to hear, of course, but it's one of those things I already knew in my heart but didn't want to acknowledge. Much of this came up in a discussion of future therapies, notably immuno-enhancing treatments, a group of which are emerging for head and neck cancers.
That's great, but I've preliminarily ruled them out based upon my new rule of not engaging new drugs or therapies where the benefit/risk ratio is lower than 65 per cent positive/ 35 negative, as unengageable. I say this knowing that it knocks many possibilities to the wayside at the moment, re-saddles the horse of conservatism, and seats me clearly on Old Tex, the horse that would like to run, but is too old to pursue his old haunts on the race course. In this cause, I invoke, the Price Rule, which now states that excessive risk has never worked for me in this fight, it has only distracted me while my ass got pummeled by the bad luck of risk-taking.
On that conservative bent, I returned to chemo today, ready to start a few weeks of observation on my lungs, my breathing, my reactions to the regimen--it's not changing yet. Still Erbitux and 5FU, hopefully helping my left lung to leave its state of inflammation, to hold the right nodule back (it was a pea, now it feels like a small walnut). I'm sitting here with Erbitux dripping into me, and I'm tired, so very tired. I'm hyper-sensitive to feeling breathing right now, so unless it's perfect, I can't easily fall asleep. Last night, I managed to get to sleep, but not stay there. I popped up at 3am. I'm tired in my mind, an endless calendar of appointments ahead of me. I wonder what I'll do this Winter when it's so difficult to breathe anyway, and something must be shoveled.
There are new concerns--is there a tumor developing on the left chest wall? chief among them. Zeus may have eaten his children, but he has nothing on me eating my own body into oblivion.
It's true that I'm not scared as much as I suffer from seeing the picture in parts, and rarely the privilege of seeing the body in total, the tumors catalogued and verified, everything explainable and even risible if I think hard about it all. It is more difficult to be brave if you don't know precisely what you're brave about, how much bravery it will take to Superman-stand against this stuff as it tried to colognize Gotham. Wbo knows? There's no right or wrong answer.
I am among friends, in restarted chemo, people who missed me while I was gone. This time around, I've had scans and blood draws to keep ourselves in contact, but that's not the same as my every Friday at 8am schedule I had been keeping. Back to that, empowered by small works of fact, I keep up a small but mightly push up Sisyphus Hill. It's the least, and just about the only, thing I can do.
And I call on peace and light to come back, on my spirt guides to teach me grace. I'm practicing being gracious while my underarsm throb as they are right now. Pain as the reminder that I'm alive. My breathing the rhythm section of a band that shouldn't be playing right now quite so well but is, pulling me downfileld
Saturday, September 5, 2015
Monday, August 31, 2015
Miley Cyrus, ugh.
I guess it was just a year ago that I felt like bleaching my eyeballs out after watching Miley Cyrus wag her yeasty tongue out of her head and grind her ass against Robin Thicke's self confessed big dick on television.
I didn't think this was an epochal event as others seemed to feel: our culture has sunk lower and in far more interesting ways than the simple evocation of pedophilia initated by something that looked like a rabid chipmunk who had been beaten to an idiot state by a cartoon log. Sorry Miley, you failed to shock, you just disgusted: oh, look your tongue's out like an oral obsessive; oh, look I can alsmost see your titties in your little flesh colored pleather outfit; oh, look how slutty you are bent over like an alley cat. Yawn.
In the year since, its just gotten more inexplicably public and less sexy than the zero sum game it aimed for previously. Miley smokes pot, Miley wears pasties in public--so what? Its mere predictability has rendered useless any message that was intended, if it even went that far. Tongue out? Must be the Cyrus girl, though someone has been thoughtful enough to hand the dumb bitch a tongue scraper.
Cancer during this year has been my personal Miley, equally distateful, introducing the boredom of a type of pornography into my life that I look away from simply because i can barely stay awake to watch it. We know this story, our relatives, our friends, our loved ones, virtually everyone has lost someone to this ass-wagging, tongue-lolling downward spiral of a disease. We know the sudden eruption of a tumor or the progression of a metastisized clump of rogue cells isn't the death sentence it once was, it's a call to battle, to change drugs, to toughen mentally against the coarsening of a life already affected, effected to stagger against a killer who strikes first requiring a constant defense.
There have been articles in the Times and on my favorite blogs about Miley, and like me, they note that's she has managed to strip all the sex from sexy, all the shock, surprise and delicious rebellion from this long, extended strip teaste. A few years ago I started to notice that porn was boring in this way. I've never been a big consumer of it, but you know, an occasional clip or two can really pull on the imagination. But the pizza boy who delivers when the guy is just out of the shower, the paper boy who has to be paid when your robe accidentally opens, the plumber who cleans your pipes then cleans your pipes, you simply know the steps this dance requires. Like a Volta with Elizabeth I, it's the steps and the not the act that become the exegesis of stagnation.
If cancer is waving its ass at me attempting to lure me further into defeat, or if it is waving its tits in ill-fitting pasties hoping the shock will weaken me, all I can say is bitch, please. I live in the age of Miley Cyrus, and frankly, she has just about ruined everything you could use to confound my senses. Rather than sit on my lawn chair yelling at the neighborhood kids to dress it up, I'll do them the favor of ignoring their ignorantly sexualized clothes. That's no more a turn on than I am, dumb ass, and I hope you grow old enough to know that.
Sunday, August 30, 2015
3am: Card 2
That's how I started one day recently, awakened at 3am by errant snot in my trach, making breathing a dice game. 3AM, I sit up and distract myself with surfing the internet, checking Facebook, anything to not think of the facts at hand.
I rarely think of how I will survive, how I will feel, if I will die on any given day. I try to accept my lack of control by exerting what control I have, now, in the moment, the only place it has any agency. I'm not sure if I'm copping out or buying into reality, or even from what reality is constructed. l believe in a mystical world, but not a fatuously mystical world--magic exists, but magic isn't an explanation. To me, magic is where my reality intersects yours, sort of a thesis for phenomenology in everyday life.
My reality keeps bumping up against the big fact I deal with, cancer, and recoiling or engaging, I find there's some magic in that balloon pressing up against that popcorn ceiling. I spark a bit, I ask "why me" for the umpteenth time, I engage death, and what I hope it leads to, I engage my daydreams of what I'd be doing if I could in a body that seems to be boxed in an every decreasing enclosure. At 3AM, I look at an online tarot site, ask my silent question, and in answering it, the deck pops Temperance into slot number 2. It's the only connection that seems to remotely reflect my life that stands behind my question "will my health improve?" because it's true.
I'd accept no great improvement in my health to experience peace, balance, normality. I don't place much faith in prognostication, and tarot is only good with witnesses around you, friends, drinking wine and passing the joint. How I dealt with it in undergrad would work now, if only I could drink wine and smoke j's. I go to jobs@IU, another fantasy, at 4am, still sitting up, still constructing scenarios in my head that owe nothing to errant ephemera. I do this regularly. I read about jobs like I read food receipes, drooling, thinking of how well I could do A or B. Over the summer jobs opened up that I would kill to have, if only having them meant I didn't have to work, which I clearly cannot do. I look at the jobs site as this negative but reality based melody plays in my head. I look at houses I could buy after winning the lottery on Zillow. Apartments in NYC for a few million. Savannah historic homes or Charleston penthouses, I think of places and look.
It's well past 4am, my breathing has slipped into a normal pattern. I pause and stare at my laundry basket, my eyes itch, there's a spot on my back I cannot reach that would love my nails on it, if only for a moment. It's not to be. My reach and my grasp are vastly different: reach-wise I could walk to Vladivostok; grasp-wise, I cannot go because I would not hold up to travel that far. I need my head elevated, my feet warm, my cabin with ready heat or cooling for after I take my pain meds which often make me sweat. I need the place where my reality bumps this fact and this fact will not move. i feel like a clock that is loud in an underfurnished room. A meme by which time passes either too quickly or showly but is measured. Quckly in my reality, perhaps stentorian, quietly, slowly, in yours.
I rarely think of how I will survive, how I will feel, if I will die on any given day. I try to accept my lack of control by exerting what control I have, now, in the moment, the only place it has any agency. I'm not sure if I'm copping out or buying into reality, or even from what reality is constructed. l believe in a mystical world, but not a fatuously mystical world--magic exists, but magic isn't an explanation. To me, magic is where my reality intersects yours, sort of a thesis for phenomenology in everyday life.
My reality keeps bumping up against the big fact I deal with, cancer, and recoiling or engaging, I find there's some magic in that balloon pressing up against that popcorn ceiling. I spark a bit, I ask "why me" for the umpteenth time, I engage death, and what I hope it leads to, I engage my daydreams of what I'd be doing if I could in a body that seems to be boxed in an every decreasing enclosure. At 3AM, I look at an online tarot site, ask my silent question, and in answering it, the deck pops Temperance into slot number 2. It's the only connection that seems to remotely reflect my life that stands behind my question "will my health improve?" because it's true.
I'd accept no great improvement in my health to experience peace, balance, normality. I don't place much faith in prognostication, and tarot is only good with witnesses around you, friends, drinking wine and passing the joint. How I dealt with it in undergrad would work now, if only I could drink wine and smoke j's. I go to jobs@IU, another fantasy, at 4am, still sitting up, still constructing scenarios in my head that owe nothing to errant ephemera. I do this regularly. I read about jobs like I read food receipes, drooling, thinking of how well I could do A or B. Over the summer jobs opened up that I would kill to have, if only having them meant I didn't have to work, which I clearly cannot do. I look at the jobs site as this negative but reality based melody plays in my head. I look at houses I could buy after winning the lottery on Zillow. Apartments in NYC for a few million. Savannah historic homes or Charleston penthouses, I think of places and look.
It's well past 4am, my breathing has slipped into a normal pattern. I pause and stare at my laundry basket, my eyes itch, there's a spot on my back I cannot reach that would love my nails on it, if only for a moment. It's not to be. My reach and my grasp are vastly different: reach-wise I could walk to Vladivostok; grasp-wise, I cannot go because I would not hold up to travel that far. I need my head elevated, my feet warm, my cabin with ready heat or cooling for after I take my pain meds which often make me sweat. I need the place where my reality bumps this fact and this fact will not move. i feel like a clock that is loud in an underfurnished room. A meme by which time passes either too quickly or showly but is measured. Quckly in my reality, perhaps stentorian, quietly, slowly, in yours.
Monday, August 24, 2015
The Absurdist Comedy of Health Care
I begin this post lying on a cot in Room Three of Bloomington Hospital's ER, which is ridiculously over-air conditioned. I came becaue I've been experiencing a progressive closing of the airway which usually seats my trach. My bout of pneumonia was a peculiar complication for my trach. There's was so much stuff being coughed out of me that keeping it in was impossible. Then, I had it out too long and there's a build up of the heavy, snotty, waxy stuff the body produces in gallons, complicating putting it back in. Normally, the trach protects the airway from the buildup, so taking it out is no small event: Don't do this at home unless you're ready for bullshit.
They've come and gone in Room Three, looking at me, questioning, assuring me they can do nothing for me. Doctors have been here, nurses by the handful. They can't quite grasp why I took the trach out, and they can't quite grasp how to fix it. They've finally decided to call an outside ENT and send me to an appointment with him at 1pm.
Does it seem that in a building with hundreds of medical professionals that I should find treatment by someone amongst them? It does to me. It seems reasonable to assume that an Emergency Room would have staffing that would allow for that, and the resources of the hospital where a hole in the net of comprehensive treatment is found. Doesn't seem to be the case.
Absurdist comedies run the gamut from funny to grim, the comedy relying upon an understanding that the situation in which we find outselves is ridiculous to say the least. The LCD is that we all find it incomprehensible that what is unfolding before out eyes is rational or advisable. Right now, I'm waiting on a chest xray that was ordered two hours ago. I need to pee. Charles is email-working over to my left.
I'll let you know how this story plays out, after the ENT visit, coming up.
* * * * * *
it's now 2:23pm and I'm home, and here's what has been happening:
After the chest xray was finally taken and read by the radiologists, they decided that the pneumonia masses on the right lunig didn't look healed enough, and that I'd have to be readmitted into the hospital. This is where the gloves went on and I came out swinging.
I'd just had a CT scan that showed an improvement in these pneumoia pockets they were talking about, the xrays had to be wrong or misinerpreted (it happens) and I pointed out the more positive resutls from the recent CT. They agreed to try and access it in their system, and when they--of course--did, they decided on a comparitive film done by their CT. I agreed faster than a crack whore looking at a five dollar tip. At this point, I would do just about anything to not be admitted to a hospital. So if you're looking for cheap sex with someone who's completely uninterested in sex and majorly jacked up, I'm your guy.
the CT comes back confirming my side of the story, but what now? Sounding as casual as a Forever 21 salesperson, the doctor said: "yeah, it looks like the tumor on my lung has grown significantly though."
This doctor (actually a nurse practitioner, otherwise very nice), broke the cardinal rule of oncology: don't use the words tumor and significant growthl together. Our ears and fears are trained to find those words in a 15000 word report and fixate upon them. Significant is not good. Tumor is not good. Significant Tumor + growth = Freak the Fuck out.
Dr. Dayton is on vacation right now, so whatever chance or opportunity to freak out on the shoulder on my oncologist is closed to me. Rationalize: tumor doesn't always mean cancer; tumor is used differently, by different people, to describe states of being of a mass of tissue. And my favorite coping mechanism: Jesus Christ, stop thinking about it lest you go mad.
So, I know if it's the worst case scenario, I'll have to return to chemo earlier than I want, there will be a new, tougher, regimen. My days more than ever will be taken up with cancer, I may not respond well. There's nothing I can do but wait, and wait in light.
Next is the ENT visit at 4pm. We'll see how that goes--hopefully more concrete than this.
They've come and gone in Room Three, looking at me, questioning, assuring me they can do nothing for me. Doctors have been here, nurses by the handful. They can't quite grasp why I took the trach out, and they can't quite grasp how to fix it. They've finally decided to call an outside ENT and send me to an appointment with him at 1pm.
Does it seem that in a building with hundreds of medical professionals that I should find treatment by someone amongst them? It does to me. It seems reasonable to assume that an Emergency Room would have staffing that would allow for that, and the resources of the hospital where a hole in the net of comprehensive treatment is found. Doesn't seem to be the case.
Absurdist comedies run the gamut from funny to grim, the comedy relying upon an understanding that the situation in which we find outselves is ridiculous to say the least. The LCD is that we all find it incomprehensible that what is unfolding before out eyes is rational or advisable. Right now, I'm waiting on a chest xray that was ordered two hours ago. I need to pee. Charles is email-working over to my left.
I'll let you know how this story plays out, after the ENT visit, coming up.
* * * * * *
it's now 2:23pm and I'm home, and here's what has been happening:
After the chest xray was finally taken and read by the radiologists, they decided that the pneumonia masses on the right lunig didn't look healed enough, and that I'd have to be readmitted into the hospital. This is where the gloves went on and I came out swinging.
I'd just had a CT scan that showed an improvement in these pneumoia pockets they were talking about, the xrays had to be wrong or misinerpreted (it happens) and I pointed out the more positive resutls from the recent CT. They agreed to try and access it in their system, and when they--of course--did, they decided on a comparitive film done by their CT. I agreed faster than a crack whore looking at a five dollar tip. At this point, I would do just about anything to not be admitted to a hospital. So if you're looking for cheap sex with someone who's completely uninterested in sex and majorly jacked up, I'm your guy.
the CT comes back confirming my side of the story, but what now? Sounding as casual as a Forever 21 salesperson, the doctor said: "yeah, it looks like the tumor on my lung has grown significantly though."
This doctor (actually a nurse practitioner, otherwise very nice), broke the cardinal rule of oncology: don't use the words tumor and significant growthl together. Our ears and fears are trained to find those words in a 15000 word report and fixate upon them. Significant is not good. Tumor is not good. Significant Tumor + growth = Freak the Fuck out.
Dr. Dayton is on vacation right now, so whatever chance or opportunity to freak out on the shoulder on my oncologist is closed to me. Rationalize: tumor doesn't always mean cancer; tumor is used differently, by different people, to describe states of being of a mass of tissue. And my favorite coping mechanism: Jesus Christ, stop thinking about it lest you go mad.
So, I know if it's the worst case scenario, I'll have to return to chemo earlier than I want, there will be a new, tougher, regimen. My days more than ever will be taken up with cancer, I may not respond well. There's nothing I can do but wait, and wait in light.
Next is the ENT visit at 4pm. We'll see how that goes--hopefully more concrete than this.
Sunday, August 23, 2015
Tangents
Often, when reading internet posts on huffpost, or political blogs, or newspapers, I find a story that raises questions so I try to find answers, or I will see an article in a travel section and realize I don't know much about the destination or the region in which it's located, so I chase some info down. I go on tangents, some short, some an hour-long sojourn. Today, my tangent was Mauritania.
It seems wrong to me to not know something if you can know it. With cancer, for example, I do far less research than you would suspect. Frankly, my science background is very light, rendering most articles fully unintelligible, some articles are simply from one's personal experience which don't offer objectivity (useful perspectives though), and others are miles out newspaper features that offer the skeleton but not the meat and bones of the conclusions from research, of the trials of a new drug, the results of a study of nutrition and cancer, and tangents for me need to yield useful (subjectively!) information about the question that has popped up or the topic upon which I found I knew too little.
Mauritania is the 29th largest country in the world. Or the 30th. I've seen both used.
Anyone needs to know more, and there's always more to know. Now if I meet a Mauritanian, I will know to ask about the regularity of military coups, the socio-cultural divide between the south and the north, the oases often found at the valley level of the limestone escarpments. I would ask what Nouakchott is like, whether (if I traveled), I'd enjoy what I found there, did you. Know that Mauritania and I are the same age?
When I was first diagnosed with cancer, I meandered around the web wondering if I needed to seek out community, survivor networks, places to get a back rub with no deep tissue massage because I was afraid what was left of me would snap in two. I found all of that, but no desire for any of it. I've never been the best resident of a community, even amongst those who share a close experiential affinity. I like being alone too much, I like living in my head, I like being in charge of an army of one.
The success of any good tangent search is the ability to locate a useful piece of information from a site and move on--often a pointer to a new search of a related topic you didn't know of, or hadn't thought of on your own. Too, you have to read and not just scan if the topic is new. And if it's at present getting a bit boring, well, that's what bookmarks are all about.
I have likely satisfied my mission concerning Mauritania-the odds I'll meet someone from there are quite low; there are only a bit over 3.5 million of them according to the 2013 census figures on Wikipedia, or 3.89 million according to the World Bank. But even though this mission, this tangent, was brief, I still find I'm pulling for Mauritania to thrive. Because that's what 95% of my tangents are about: to find the fact, the tip, the procedure, to bring life back to full, to achieve a fair and equitable life, to never stop learning, to thrive.
It seems wrong to me to not know something if you can know it. With cancer, for example, I do far less research than you would suspect. Frankly, my science background is very light, rendering most articles fully unintelligible, some articles are simply from one's personal experience which don't offer objectivity (useful perspectives though), and others are miles out newspaper features that offer the skeleton but not the meat and bones of the conclusions from research, of the trials of a new drug, the results of a study of nutrition and cancer, and tangents for me need to yield useful (subjectively!) information about the question that has popped up or the topic upon which I found I knew too little.
Mauritania is the 29th largest country in the world. Or the 30th. I've seen both used.
Anyone needs to know more, and there's always more to know. Now if I meet a Mauritanian, I will know to ask about the regularity of military coups, the socio-cultural divide between the south and the north, the oases often found at the valley level of the limestone escarpments. I would ask what Nouakchott is like, whether (if I traveled), I'd enjoy what I found there, did you. Know that Mauritania and I are the same age?
When I was first diagnosed with cancer, I meandered around the web wondering if I needed to seek out community, survivor networks, places to get a back rub with no deep tissue massage because I was afraid what was left of me would snap in two. I found all of that, but no desire for any of it. I've never been the best resident of a community, even amongst those who share a close experiential affinity. I like being alone too much, I like living in my head, I like being in charge of an army of one.
The success of any good tangent search is the ability to locate a useful piece of information from a site and move on--often a pointer to a new search of a related topic you didn't know of, or hadn't thought of on your own. Too, you have to read and not just scan if the topic is new. And if it's at present getting a bit boring, well, that's what bookmarks are all about.
I have likely satisfied my mission concerning Mauritania-the odds I'll meet someone from there are quite low; there are only a bit over 3.5 million of them according to the 2013 census figures on Wikipedia, or 3.89 million according to the World Bank. But even though this mission, this tangent, was brief, I still find I'm pulling for Mauritania to thrive. Because that's what 95% of my tangents are about: to find the fact, the tip, the procedure, to bring life back to full, to achieve a fair and equitable life, to never stop learning, to thrive.
Thursday, August 20, 2015
Kinda, Sorta, Wanna Cry
Generally speaking, I loathe equivocation which has become the style of spoken English. Listen to any "analyst" on a news show, and just count the number of times that persons says: "sort of". I've heard statistics quoted followed by that phrase, evident truths modified by it, prognostication brought low by its inclusion. Yet few people seem to notice it.
I'm much more decisive and opinionated than that. I don't have time for a metaphorical existence where perhaps something is one way, perhaps another. I don't like to wiggle out from under my observational responsibility by lacking the back bone to call shit something simple like shit.
To date this has been helpful in dealing with cancer. Idiopathic and cruel, cancer isn't much impressed by equivocation, though to be honest it scoffs at decisiveness too, although I see that it respects it more. While one is trying to figure out how sort of cancer is, it's busy eating your bones, taking yummy nibbles at vital tissue or just low riding the body's highway looking to bulge out here or there.
I, though, have been standing in the doorway of Equivocation's hovel the past couple of weeks because that's where circumstance has left me. A lymph node under my right arm is either inflamed with infection or hosting a growing tumor-- we don't know which yet. Normally, the waiting to find out wouldn't bother me--so why are we waiting? Still, there's pockets of infection in my lungs and we are trying to clear that out. I have another CT scan next week, and after, another sit down with Dayton. There is still about a week or two before I know.
In the meantime, I want to cry because my body has erupted into 24 hr pain, dull aches here, ephemeral bolts of it there, the right armpit screaming, the left one moaning, and much of the rest of me out of kilter. I have had a fairly easy time with pain as we've moved forward, and I've been grateful for that. Experiencing it as part of the moments of your day is an awful burden. And I feel burdened.
I'm on a pain patch, one that I requested be kept low, to keep me out of the zombie state to which I'm easily drawn on pain meds. Even at low dose I have to watch my balance and my two fingered iPad typing is about impossible. I rarely drive anymore but I don't drive at all on this combo. I know better.
My hydrocodone has turned into a 24 hour a day reliever too, every six hours. You'd think the combination would suffice, but I still feel it, burning pain, ache, dulled slightly further, a bolt. I kinda wanna cry.
I'm not big on crying. For me when I do, it's a full body experience and my nose runs like its A wet Spring on the Mississippi. I still have the men don't cry situation like a lead weight around my imagination. I was born in 1960, after all.
I want to cry because I fear that node is a new cancer that I have to fight, that I have to gin up my positivity and stomp reality away. I have to talk about making it to 70 while seeing that goal slip out of sight, and I have to deal with being ok about that, about fighting smarter and not blindly, about being rationally prepared for what might happen. This is a lot of work, I have to tear apart responses that served me well in the past and truly question if that rote response is enough to pull me through now. I don't think it is and that scares me; I need to be ready if I need to fight.
Then there's the thought that this is an infection, enabled by the pounding my system takes weekly, or pneumonia, or what have you. What if I've become too dramatic to see that this can be fought with the right antibiotic, a head screwed on tight, a bit of humor. Not everything that happens with cancer is life or death. Cancer, conscienceless and biologically predestined, simply obeys the idea of destruction. It is the very antithesis of kinda, sort of.
I'll be scared this week, I'll be in pain. Sleep will be interrupted, odd, deep at times with milky dreams forgotten upon awakening. I'll deal because I have to, and then we'll see what we must do next.
I'm much more decisive and opinionated than that. I don't have time for a metaphorical existence where perhaps something is one way, perhaps another. I don't like to wiggle out from under my observational responsibility by lacking the back bone to call shit something simple like shit.
To date this has been helpful in dealing with cancer. Idiopathic and cruel, cancer isn't much impressed by equivocation, though to be honest it scoffs at decisiveness too, although I see that it respects it more. While one is trying to figure out how sort of cancer is, it's busy eating your bones, taking yummy nibbles at vital tissue or just low riding the body's highway looking to bulge out here or there.
I, though, have been standing in the doorway of Equivocation's hovel the past couple of weeks because that's where circumstance has left me. A lymph node under my right arm is either inflamed with infection or hosting a growing tumor-- we don't know which yet. Normally, the waiting to find out wouldn't bother me--so why are we waiting? Still, there's pockets of infection in my lungs and we are trying to clear that out. I have another CT scan next week, and after, another sit down with Dayton. There is still about a week or two before I know.
In the meantime, I want to cry because my body has erupted into 24 hr pain, dull aches here, ephemeral bolts of it there, the right armpit screaming, the left one moaning, and much of the rest of me out of kilter. I have had a fairly easy time with pain as we've moved forward, and I've been grateful for that. Experiencing it as part of the moments of your day is an awful burden. And I feel burdened.
I'm on a pain patch, one that I requested be kept low, to keep me out of the zombie state to which I'm easily drawn on pain meds. Even at low dose I have to watch my balance and my two fingered iPad typing is about impossible. I rarely drive anymore but I don't drive at all on this combo. I know better.
My hydrocodone has turned into a 24 hour a day reliever too, every six hours. You'd think the combination would suffice, but I still feel it, burning pain, ache, dulled slightly further, a bolt. I kinda wanna cry.
I'm not big on crying. For me when I do, it's a full body experience and my nose runs like its A wet Spring on the Mississippi. I still have the men don't cry situation like a lead weight around my imagination. I was born in 1960, after all.
I want to cry because I fear that node is a new cancer that I have to fight, that I have to gin up my positivity and stomp reality away. I have to talk about making it to 70 while seeing that goal slip out of sight, and I have to deal with being ok about that, about fighting smarter and not blindly, about being rationally prepared for what might happen. This is a lot of work, I have to tear apart responses that served me well in the past and truly question if that rote response is enough to pull me through now. I don't think it is and that scares me; I need to be ready if I need to fight.
Then there's the thought that this is an infection, enabled by the pounding my system takes weekly, or pneumonia, or what have you. What if I've become too dramatic to see that this can be fought with the right antibiotic, a head screwed on tight, a bit of humor. Not everything that happens with cancer is life or death. Cancer, conscienceless and biologically predestined, simply obeys the idea of destruction. It is the very antithesis of kinda, sort of.
I'll be scared this week, I'll be in pain. Sleep will be interrupted, odd, deep at times with milky dreams forgotten upon awakening. I'll deal because I have to, and then we'll see what we must do next.
Wednesday, August 19, 2015
A Spa Day
Today, I go see my friends at the Wound Care Center, the doctor and nurses who are overseeing the post surgical chest wounds from my last surgery.
Wound Care is one of the coldest offices I visit regularly and going without a sweater is completely madness or an act of faith in one's resilience. I don't know why we insist on over-air-conditioning every office and public space in this country. It feels a lot like watching a drunkard in the old Hollywood movies go after some hooch in a bag. Are we celebrating our ability to mess up the planet's ecosystem so thoroughly or trying to make sure that nail in the coffin seals tightly? For me, for other cancer patients, it's a trial. Often enough I'm half naked in my appointments and more often than not, I'm freezing.
The competence and friendliness of the WC folk, though, is nice to encounter, and the fact that they've seen much worse than my healing no-no's is somehow comforting.
The rest of the day promises to bring a nap or two, a session of reading, nothing major...which sounds wonderful to me. I hope your Wednesday includes something nice like wound care, and something not so icebox cold that it threatens credulity.
Wound Care is one of the coldest offices I visit regularly and going without a sweater is completely madness or an act of faith in one's resilience. I don't know why we insist on over-air-conditioning every office and public space in this country. It feels a lot like watching a drunkard in the old Hollywood movies go after some hooch in a bag. Are we celebrating our ability to mess up the planet's ecosystem so thoroughly or trying to make sure that nail in the coffin seals tightly? For me, for other cancer patients, it's a trial. Often enough I'm half naked in my appointments and more often than not, I'm freezing.
The competence and friendliness of the WC folk, though, is nice to encounter, and the fact that they've seen much worse than my healing no-no's is somehow comforting.
The rest of the day promises to bring a nap or two, a session of reading, nothing major...which sounds wonderful to me. I hope your Wednesday includes something nice like wound care, and something not so icebox cold that it threatens credulity.
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