Sometimes you don't feel so good the day before a fight. Sometimes you don't feel so good the day of a fight. But when I go into that ring, I fight with all my heart.
Winning is for losers.
I fight to kill.
Wednesday, May 28, 2014
Learning it the Easy Way
Let's talk turkey here. Cancer is a fucking nightmare. I'm starting chemo today and for the next four months I'm going to be dealing with a seeming endless list of depredations. I will be trying to save my fingernails from falling off, my hair from falling out, my mouth from being so painful that I can't eat. I will be trying to avoid losing feeling in my fingers and toes. I will be trying to keep my digestive tract intact, my food both up and down in the right amounts. I will be fighting weight gain and weight loss. I will be fighting acne from the steroids. I will be fighting anemia.
This is round two of the fight.
There are six parts of this round.
And I have it fucking easy.
I want everyone to understand this. This is an easy one. My cure rate numbers are solidly optimistic. I am not dealing with areas of high ickiness, such as my brain or my bowels or my blood. I am a good and easy scenario.
And still... fucking nightmare.
My risk factors that got me here? I got older. My menopause came late. I exercise less frequently than I should, but probably more frequently than most. I tend to weigh about 15 pounds more than I should. I work and take on more than I should, but I handle it pretty well.
I don't drink more than occasional beer. I don't smoke. I don't eat badly. I have a good attitude about life. I try to keep balanced. I don't work in a toxic work environment. As my doctor says, I don't suck down carcinogens. When everyone around me gets sick, I usually don't. I see an acupuncturist who keeps me balanced and in harmony.
That's it.
And still this is happening.
So here's what I want to say to everyone I love: Do your absolute best to not get here. This sucks. And I look at people who "just" have a few cigarettes a week, or "will get to the gym later," or who are otherwise putting off health because we all deep down inside believe with a 20 year old's conviction that we are immortal, and I want to slap them in the face. Quit it. Reality indicates we are not going to live forever, which means we don't have infinite amounts of time to rectify the things that we really should be rectifying.
There are risk factors we can fix, and there are risk factors we can't. We can't avoid getting older (at least not in a way that still is concerned with cancer.) We can't avoid breathing our air and ingesting much of our environmental pollution. But we can fix our intake, and our exercise, and our thought processes. We can fix how we go about managing our stress. We can do things like eating to nourish, rather than just avoiding total crap. We can keep screening ourselves to make sure, if the bad stuff happens, it is caught and dealt with as early as possible.
If I had done everything wrong, I could sit here and say, hey, don't be me and you'll be fine. But I really want everyone to understand that there are some things you can't change. Risk factors abound, so all we can really to is fix the things we can fix.
At some point, even with all the best intentions, you may very well end up being me and... if you are... you'll work through it and deal and it will be that thing that changes your life completely. It won't be the end of the world. And it may be worse to not learn the lesson, than to learn it the hard way.
But... try to learn it the easy way, OK? For me, for you, for the people in your life. We will all thank you for it.
This is round two of the fight.
There are six parts of this round.
And I have it fucking easy.
I want everyone to understand this. This is an easy one. My cure rate numbers are solidly optimistic. I am not dealing with areas of high ickiness, such as my brain or my bowels or my blood. I am a good and easy scenario.
And still... fucking nightmare.
My risk factors that got me here? I got older. My menopause came late. I exercise less frequently than I should, but probably more frequently than most. I tend to weigh about 15 pounds more than I should. I work and take on more than I should, but I handle it pretty well.
I don't drink more than occasional beer. I don't smoke. I don't eat badly. I have a good attitude about life. I try to keep balanced. I don't work in a toxic work environment. As my doctor says, I don't suck down carcinogens. When everyone around me gets sick, I usually don't. I see an acupuncturist who keeps me balanced and in harmony.
That's it.
And still this is happening.
So here's what I want to say to everyone I love: Do your absolute best to not get here. This sucks. And I look at people who "just" have a few cigarettes a week, or "will get to the gym later," or who are otherwise putting off health because we all deep down inside believe with a 20 year old's conviction that we are immortal, and I want to slap them in the face. Quit it. Reality indicates we are not going to live forever, which means we don't have infinite amounts of time to rectify the things that we really should be rectifying.
There are risk factors we can fix, and there are risk factors we can't. We can't avoid getting older (at least not in a way that still is concerned with cancer.) We can't avoid breathing our air and ingesting much of our environmental pollution. But we can fix our intake, and our exercise, and our thought processes. We can fix how we go about managing our stress. We can do things like eating to nourish, rather than just avoiding total crap. We can keep screening ourselves to make sure, if the bad stuff happens, it is caught and dealt with as early as possible.
If I had done everything wrong, I could sit here and say, hey, don't be me and you'll be fine. But I really want everyone to understand that there are some things you can't change. Risk factors abound, so all we can really to is fix the things we can fix.
At some point, even with all the best intentions, you may very well end up being me and... if you are... you'll work through it and deal and it will be that thing that changes your life completely. It won't be the end of the world. And it may be worse to not learn the lesson, than to learn it the hard way.
But... try to learn it the easy way, OK? For me, for you, for the people in your life. We will all thank you for it.
Tuesday, May 27, 2014
Santa Cruz, California
Up since 3:30. The worst insomnia I have ever experienced, and I have to say I've been experiencing a lot recently. Dog tired, and unable to sleep. Tried the breathing, tried the reading, tried it all (except taking something for it, the appropriate medicines having been left in the truck.) Read until I could not keep my eyes open, then shut my eyes with blissful relief, then... nothing. No blissful cessation. No sleep.
Santa Cruz is a charged location for me. I came here as a freshman forty years ago, and experienced one year of wild frenetic youth before the funding for college was removed from me and I was forced, with a broken heart that has never fully healed, to drop out. After a few months of despair, I decided to be fully independent and spent a peripatetic few years working and paying my way through two other colleges. Eventually I returned to Santa Cruz -- older, wiser, meaner, and far more skilled in the ways of the world -- to complete my degree from the place I had started from and always loved. I finished on my own terms, with a gritty determination to be my own person, fiercely independent, and to never allow anyone to take something utterly precious away from me ever again.
Santa Cruz is fraught with my most extreme memories. From the only year of my life where I did not had to work a job (or take care of a parent), to the years of working four jobs, finishing up my degree, and creating a working relationship with the world that has lasted me the rest of my life -- I have been both my most free and my most indentured here. Here I created my working and living persona, a persona largely composed of pushing through, embracing fully, doggedly serving my responsibilities, and finding joy in a vast spectrum of people, professions, ideas, and experiences.
I grew up here. It was here that I was, for the only brief period of my life, able to be my young self in real time, a freshman taking classes and making friends and being confused and scared and ecstatic at the prospect of life unfolding before her. It was here I learned how to push the limits of my endurance and resourcefulness. And now, hours before my next set of medical obstacles, I come back to this place and find the old intensity vibrating around me, the siren song of youth mixed with its pain and loneliness and fear.
None of which make for a good night's sleep.
After almost three hours of trying, I finally get up. We are in a beautifully restored Victorian mansion overlooking the Boardwalk. The appointments are lovely, their grace and quality bitterly underscoring the weird conflicted alienation I am feeling. I want to be here. I want to relax. I want to sit in this sweet room with the rain beating down around us, watching a movie, being cozy, having a moment to breathe and be at peace. I want to explore this big old house, find a way up to the widow's walk on top, check out the view from the balconies. Instead I am simply gripped with apprehension. Me, the conquering warrior who came back to this town to complete what she had finished. Me, the determined scrappy street kid who juggled it all, and surmounted enough obstacles to learn how to manage life in the process. Me the sturdy, me the strong. Gripped with apprehension.
Mostly, I need fresh air. So I pull on a sweatshirt and jeans and edge out of the room, finding my way to the front porch of the house. I am immediately hit by the smell of the air. Cold and bracing, smelling of the sea, and clarity, and hope. It was in this air that I would wake up early as a young female stagehand and bike up to the civic center, to work the Miss Cal pageant, slogging through 16 hours hauling cable with the guys. In this air I would get up and trudge to class, the redwoods up on the hill adding their ecstatic flavors to the tang of the sea air. The same chill. The same piercing sadness interlaced with crazy joy. The beauty of the freshness too much to be apprehended. The despair a deep component of it, part of it, inextricable.
How can I say I was, and am, so happy in this place when it's all so permeated with such sadness? The happiness I feel here is maybe even because of that, because of the intensity, because of all the layers and flavors.
This is a place where I feel. Maybe that's because this is a place where I was authentically young once, full of the erratic emotions of true youth. This is a place where I've been ragged and harsh and extreme. This time around I have come back for solace and escape and a whiff of that freedom... but in the nighttime hours I now remember that none of those things have ever been peaceful, or easy, or free. Always, as now, they are pierced through with pain and regret, even as my heart flies with elation and joy.
During those years, I battled through obstacles and ended up the conqueror. Perhaps I can do that once again. The sunrise greets me as I sit on the wide porch of this house, the rays unexpected, a message from the world that the cycles are constant, even when forgotten. And even as I feel the warmth of the light of the new day on my face, there is some part of my soul still in darkness. A widow staring out to sea, grieving her lost youth. Still searching, ever watchful.
Santa Cruz is a charged location for me. I came here as a freshman forty years ago, and experienced one year of wild frenetic youth before the funding for college was removed from me and I was forced, with a broken heart that has never fully healed, to drop out. After a few months of despair, I decided to be fully independent and spent a peripatetic few years working and paying my way through two other colleges. Eventually I returned to Santa Cruz -- older, wiser, meaner, and far more skilled in the ways of the world -- to complete my degree from the place I had started from and always loved. I finished on my own terms, with a gritty determination to be my own person, fiercely independent, and to never allow anyone to take something utterly precious away from me ever again.
Santa Cruz is fraught with my most extreme memories. From the only year of my life where I did not had to work a job (or take care of a parent), to the years of working four jobs, finishing up my degree, and creating a working relationship with the world that has lasted me the rest of my life -- I have been both my most free and my most indentured here. Here I created my working and living persona, a persona largely composed of pushing through, embracing fully, doggedly serving my responsibilities, and finding joy in a vast spectrum of people, professions, ideas, and experiences.
I grew up here. It was here that I was, for the only brief period of my life, able to be my young self in real time, a freshman taking classes and making friends and being confused and scared and ecstatic at the prospect of life unfolding before her. It was here I learned how to push the limits of my endurance and resourcefulness. And now, hours before my next set of medical obstacles, I come back to this place and find the old intensity vibrating around me, the siren song of youth mixed with its pain and loneliness and fear.
None of which make for a good night's sleep.
After almost three hours of trying, I finally get up. We are in a beautifully restored Victorian mansion overlooking the Boardwalk. The appointments are lovely, their grace and quality bitterly underscoring the weird conflicted alienation I am feeling. I want to be here. I want to relax. I want to sit in this sweet room with the rain beating down around us, watching a movie, being cozy, having a moment to breathe and be at peace. I want to explore this big old house, find a way up to the widow's walk on top, check out the view from the balconies. Instead I am simply gripped with apprehension. Me, the conquering warrior who came back to this town to complete what she had finished. Me, the determined scrappy street kid who juggled it all, and surmounted enough obstacles to learn how to manage life in the process. Me the sturdy, me the strong. Gripped with apprehension.
Mostly, I need fresh air. So I pull on a sweatshirt and jeans and edge out of the room, finding my way to the front porch of the house. I am immediately hit by the smell of the air. Cold and bracing, smelling of the sea, and clarity, and hope. It was in this air that I would wake up early as a young female stagehand and bike up to the civic center, to work the Miss Cal pageant, slogging through 16 hours hauling cable with the guys. In this air I would get up and trudge to class, the redwoods up on the hill adding their ecstatic flavors to the tang of the sea air. The same chill. The same piercing sadness interlaced with crazy joy. The beauty of the freshness too much to be apprehended. The despair a deep component of it, part of it, inextricable.
How can I say I was, and am, so happy in this place when it's all so permeated with such sadness? The happiness I feel here is maybe even because of that, because of the intensity, because of all the layers and flavors.
This is a place where I feel. Maybe that's because this is a place where I was authentically young once, full of the erratic emotions of true youth. This is a place where I've been ragged and harsh and extreme. This time around I have come back for solace and escape and a whiff of that freedom... but in the nighttime hours I now remember that none of those things have ever been peaceful, or easy, or free. Always, as now, they are pierced through with pain and regret, even as my heart flies with elation and joy.
During those years, I battled through obstacles and ended up the conqueror. Perhaps I can do that once again. The sunrise greets me as I sit on the wide porch of this house, the rays unexpected, a message from the world that the cycles are constant, even when forgotten. And even as I feel the warmth of the light of the new day on my face, there is some part of my soul still in darkness. A widow staring out to sea, grieving her lost youth. Still searching, ever watchful.
Sunday, May 25, 2014
Road Trip
I am blissfully in the middle of our annual weekend getaway in Northern California with a select group of very close friends. We eat meals prepared with vegetables picked from the farm minutes before consumption. We indulge in long analyses of books and movies while the night grows dark and the frogs came out around us. We listen and play music, old favorites, laughing at ourselves as we forget lyrics that were once as engrained as our telephone numbers (which we now forget also). It is a wonderful weekend, and I am deeply grateful I am healthy enough to be here for this one.
The road trip up was an intensely welcome break away from our daily scramble to keep it together. Once I got off the phone, and text, and email, putting out the fires of drama still raging on various fronts without me, I was able to slowly sink into the groove of a road trip. The dip and glide of power lines, hypnotically swooping next to the road. The dancing leaves of the cottonwoods, shimmering by the creeks down in the gulleys. Little wooden cottage motels, saying Vacancy in neon.
The central valley, rows of crops slicing out to the vanishing point. Stockyards of the complacent and the doomed, methane hanging heavy for a mile downwind. Mostly what seduces me is the white noise sound of the warm wind buffeting the windows, the wide soft blue sky arcing above us, so serene, so benign.
Comparing all this to the Hieronymus Bosch underground of my current life. The world of the sick and deformed, pained and patient, weary and worried and war torn. Humanity at its most vulnerable and real. Rooms filled with sighing tubes, soft electronic indicators. Both warm and terrifying, comforting and blood chilling. I keep my eyes averted from the feet dragging off the wheelchairs, the grotesque swollen bruises, the hands held together by exoskeletons of wires and levers and screws. I walk through the infusion rooms, seeing people in their most private and desperate hours, fighting their quiet battles for a better chance to live.
The world on the road is three dimensional, solid. We are the red and white corpuscles moving through the arterial systems. Masses through space, spinning wheels. The horizon is a clean flat line, the world a simple bisection with the sky on top, and the land below. Sickness and health, numbers and diagnoses.... these do not concern the vast natural world, only our singularly intense human one.
Join our Team written on the back of a semi, and I always consider it. Well, there'd be some time away from home. And probably a cut in pay. And, well, yes, the truckstops could be a bit sketchy for a middle aged white woman. But I always consider it. Always go down that path. Always dream a little dream of living in a world where the high power lines march beside the road, and time is measured in miles.
The road trip up was an intensely welcome break away from our daily scramble to keep it together. Once I got off the phone, and text, and email, putting out the fires of drama still raging on various fronts without me, I was able to slowly sink into the groove of a road trip. The dip and glide of power lines, hypnotically swooping next to the road. The dancing leaves of the cottonwoods, shimmering by the creeks down in the gulleys. Little wooden cottage motels, saying Vacancy in neon.
The central valley, rows of crops slicing out to the vanishing point. Stockyards of the complacent and the doomed, methane hanging heavy for a mile downwind. Mostly what seduces me is the white noise sound of the warm wind buffeting the windows, the wide soft blue sky arcing above us, so serene, so benign.
Comparing all this to the Hieronymus Bosch underground of my current life. The world of the sick and deformed, pained and patient, weary and worried and war torn. Humanity at its most vulnerable and real. Rooms filled with sighing tubes, soft electronic indicators. Both warm and terrifying, comforting and blood chilling. I keep my eyes averted from the feet dragging off the wheelchairs, the grotesque swollen bruises, the hands held together by exoskeletons of wires and levers and screws. I walk through the infusion rooms, seeing people in their most private and desperate hours, fighting their quiet battles for a better chance to live.
The world on the road is three dimensional, solid. We are the red and white corpuscles moving through the arterial systems. Masses through space, spinning wheels. The horizon is a clean flat line, the world a simple bisection with the sky on top, and the land below. Sickness and health, numbers and diagnoses.... these do not concern the vast natural world, only our singularly intense human one.
Join our Team written on the back of a semi, and I always consider it. Well, there'd be some time away from home. And probably a cut in pay. And, well, yes, the truckstops could be a bit sketchy for a middle aged white woman. But I always consider it. Always go down that path. Always dream a little dream of living in a world where the high power lines march beside the road, and time is measured in miles.
Free fall
As I explore my new life in the underworld, I am realizing that I am being forced to take the ultimate master's class in letting go of attachment.
Three months ago I would've said I'm pretty good at not getting too attached. I keep an even keel at work (mostly), I deal with the ups and downs of the opera company with (relative) equanimity, I am a parent who (usually) does not blow up at my kids, and I am a spouse who (for the most part) does not require a lot of high maintenance. I mean, I'm not perfect, but I'm a stage manager for god's sake. No matter what happens, the show goes on, and I usually just problem solve things back into place when weird stuff happens, without letting my own drama get in the way too much.
So I would've told you that I don't really sweat the small stuff that much. And the small stuff would have been defined as usual workplace things (petty quarrels, minor irritations), the travails of booking a Gilbert and Sullivan opera company, communication issues about who was supposed to take the dog out on a walk... that sort of thing.
But we're in a whole new ballgame here in terms of stuff to get rattled by. They say don't sweat the small stuff... but, really, sweating the big stuff doesn't work so well either. Not that I'm doing really well on not sweating anything at the moment.
For starters: I've had to determine how attached I am to my body. Not only did I have to lose my attachment to an outward chunk of it, I've had to lose attachment to a whole bunch of other things. My right arm is now always going to be compromised because of all the lymph nodes they took out. This will affect everything from where I have my blood pressure taken to needing to carry sunscreen with me everywhere. Any insult to that arm could cause temporary to permanent swelling, so now I baby it and will have to continue to baby it, forever. I am going to (literally) lose my attachment to my hair. I am needing to lose my assumption that it is my right to feel good at any give point in time. It's not my right. It's not a given. I need to get over that.
I have an attachment to being a fundamentally healthy person. I am rock solid, in general. I don't get sick too often, I've had only one relatively interesting episode that's landed me in the hospital, I am the person who is the patient advocate, not the patient herself. Ever. I've had to let that go. I'm now a person who has the major illness. I'm now the person who has to watch out for herself. I'm now the person with dietary restrictions and a list of medications and a Yes answer in that long checklist of possible illnesses that I always used to blow through mindlessly. I have had to rethink that attachment. I also don't want to get attached to being a sick person. I just can't attach any more, one way or another.
I have an attachment to plans. I was very much hoping and planning to go to New York for Roger's birthday this year. Nope. I have hopes and plans to see people when they are in town. Nope, not on a day when I'm not feeling well. From long term to short term, I have attachment to knowing what's going to happen next. And I can't do that any more. My attachment to planning, and its illusion of control, has had to become severed. Things change faster than I can anticipate them these days. I can't tell you what I'll be like come dinner time, let alone what day we can grab coffee next week.
Going deeper. I have an attachment to a sense of safety and security. Living in my body these days is like living in a major metropolis after a 9.0 earthquake. Everything is going haywire and, at the psychologically core level, everything is profoundly freaked out. The things I used to take for granted -- mainly that I have a fundamentally intuitive dialog with my body going on, and that I can tell when it's sick or diseased -- have been completely invalidated. Three months ago I would've told you with absolute certainty... absolute certainty... that my body was healthy. There would not have been a doubt in my mind. And yet... that certainty was incorrect. The laws of gravity have been upended, the world turned upside down, the buildings have fallen down. And it could happen again at any moment, because I don't know what's going on in my body. Security and safety? Out the window... or at least in terms of being attached to them. I have no idea what's going to happen next. And thinking I do just causes more suffering.
The depth charge goes as far down as my brain and psyche can take it. There is no more ability to attach to anything, including my very life, without understanding that that attachment means nothing and only causes suffering. As fast as I cling to anything, that thing is whipped away and I am left holding empty air. As fast as I rely on a statistic, I hear a countervailing metric. As fast as I tell myself that I'm OK, I understand deeply that I don't know that to be true. As much as I'd like to believe that life is knowable, something else comes out of left field.
It's a free for all for the old amygdala... with my fight or flight on overdrive 24/7. I'm in a constant feeling of threat. To a large extent, I really am fighting for my life here. I really am in the ring with forces coming at me. It's not my imagination, at least not totally.
AND... yet... it is. Every bit of attachment is based on some kind of habitual sense that is now having to be rethought. No more habits. No more assumptions. No more hopes. I have to dial everything back to the absolute minimum. Moment to moment, breath to breath -- that's all I have here. I can't attach to anything in my free fall out of the bay door. I can't anticipate a safe landing. I can't tell myself the parachute will absolutely open. I can't assume a benign universe that will for sure make it all right. It's a long slow descent without any expectations or assumptions... because expectations and assumptions are all guaranteed to change at this point, leaving me with nothing but the present moment, once again.
I can't even attach to the hope that one day I'll learn this lesson. But when I do, it's possible I will be able to breathe a little easier. It's possible. I don't know if I can even expect that.
Three months ago I would've said I'm pretty good at not getting too attached. I keep an even keel at work (mostly), I deal with the ups and downs of the opera company with (relative) equanimity, I am a parent who (usually) does not blow up at my kids, and I am a spouse who (for the most part) does not require a lot of high maintenance. I mean, I'm not perfect, but I'm a stage manager for god's sake. No matter what happens, the show goes on, and I usually just problem solve things back into place when weird stuff happens, without letting my own drama get in the way too much.
So I would've told you that I don't really sweat the small stuff that much. And the small stuff would have been defined as usual workplace things (petty quarrels, minor irritations), the travails of booking a Gilbert and Sullivan opera company, communication issues about who was supposed to take the dog out on a walk... that sort of thing.
But we're in a whole new ballgame here in terms of stuff to get rattled by. They say don't sweat the small stuff... but, really, sweating the big stuff doesn't work so well either. Not that I'm doing really well on not sweating anything at the moment.
For starters: I've had to determine how attached I am to my body. Not only did I have to lose my attachment to an outward chunk of it, I've had to lose attachment to a whole bunch of other things. My right arm is now always going to be compromised because of all the lymph nodes they took out. This will affect everything from where I have my blood pressure taken to needing to carry sunscreen with me everywhere. Any insult to that arm could cause temporary to permanent swelling, so now I baby it and will have to continue to baby it, forever. I am going to (literally) lose my attachment to my hair. I am needing to lose my assumption that it is my right to feel good at any give point in time. It's not my right. It's not a given. I need to get over that.
I have an attachment to being a fundamentally healthy person. I am rock solid, in general. I don't get sick too often, I've had only one relatively interesting episode that's landed me in the hospital, I am the person who is the patient advocate, not the patient herself. Ever. I've had to let that go. I'm now a person who has the major illness. I'm now the person who has to watch out for herself. I'm now the person with dietary restrictions and a list of medications and a Yes answer in that long checklist of possible illnesses that I always used to blow through mindlessly. I have had to rethink that attachment. I also don't want to get attached to being a sick person. I just can't attach any more, one way or another.
I have an attachment to plans. I was very much hoping and planning to go to New York for Roger's birthday this year. Nope. I have hopes and plans to see people when they are in town. Nope, not on a day when I'm not feeling well. From long term to short term, I have attachment to knowing what's going to happen next. And I can't do that any more. My attachment to planning, and its illusion of control, has had to become severed. Things change faster than I can anticipate them these days. I can't tell you what I'll be like come dinner time, let alone what day we can grab coffee next week.
Going deeper. I have an attachment to a sense of safety and security. Living in my body these days is like living in a major metropolis after a 9.0 earthquake. Everything is going haywire and, at the psychologically core level, everything is profoundly freaked out. The things I used to take for granted -- mainly that I have a fundamentally intuitive dialog with my body going on, and that I can tell when it's sick or diseased -- have been completely invalidated. Three months ago I would've told you with absolute certainty... absolute certainty... that my body was healthy. There would not have been a doubt in my mind. And yet... that certainty was incorrect. The laws of gravity have been upended, the world turned upside down, the buildings have fallen down. And it could happen again at any moment, because I don't know what's going on in my body. Security and safety? Out the window... or at least in terms of being attached to them. I have no idea what's going to happen next. And thinking I do just causes more suffering.
The depth charge goes as far down as my brain and psyche can take it. There is no more ability to attach to anything, including my very life, without understanding that that attachment means nothing and only causes suffering. As fast as I cling to anything, that thing is whipped away and I am left holding empty air. As fast as I rely on a statistic, I hear a countervailing metric. As fast as I tell myself that I'm OK, I understand deeply that I don't know that to be true. As much as I'd like to believe that life is knowable, something else comes out of left field.
It's a free for all for the old amygdala... with my fight or flight on overdrive 24/7. I'm in a constant feeling of threat. To a large extent, I really am fighting for my life here. I really am in the ring with forces coming at me. It's not my imagination, at least not totally.
AND... yet... it is. Every bit of attachment is based on some kind of habitual sense that is now having to be rethought. No more habits. No more assumptions. No more hopes. I have to dial everything back to the absolute minimum. Moment to moment, breath to breath -- that's all I have here. I can't attach to anything in my free fall out of the bay door. I can't anticipate a safe landing. I can't tell myself the parachute will absolutely open. I can't assume a benign universe that will for sure make it all right. It's a long slow descent without any expectations or assumptions... because expectations and assumptions are all guaranteed to change at this point, leaving me with nothing but the present moment, once again.
I can't even attach to the hope that one day I'll learn this lesson. But when I do, it's possible I will be able to breathe a little easier. It's possible. I don't know if I can even expect that.
Tuesday, May 20, 2014
Time contamination
I heard an interesting phrase on the radio today, from a woman named Brigid Shulte talking about her new book (Overwhelmed: Work, Love, and Play When No One Has the Time) -- "contaminated time." This is time that, once we carve it out of work, family, and all our other responsibilities, is still completely filled up with a mental list of all the things we haven't done in the past, and have yet to do in the future.
I only heard a few minutes on the radio, but it resonated (of course) with me. I don't think you need to have young children around or even a high pressure fancy job to feel the crunch. She gave some statistics: the US is extreme in its work hours, expecting and getting far more than most other countries in the world; in our culture we gauge status by our busy-ness not by our leisure time; add to this the influx of technological ways to encroach on our every waking hour, and it's a easy recipe for feeling overwhelmed and under productive.
I did like the time contamination idea, especially. For me, even going on vacation seems somewhat overwhelming because the time contamination before and after is huge. The stress of getting all the ducks in row prior to leaving, combined with the stress of putting them all back in a row after getting back... nearly (but not completely) makes the R&R of the time off itself a wash.
Now, granted, I'm a person who gets her ducks in a row, or tries to. That's important to me. But I don't think this is a requirement for feeling this way. Whether you are or aren't a duck herder, I think the list on everyone's mind is far longer than we feel comfortable with. How to put that list away, or how to cull it down, or how to just get enough uncontaminated time in one's life to make it not seem so completely un-doable?
I was thinking about this during another solo walk this morning, and I realized that alone time, solo time, is absolutely essential. I am a fundamental introvert who happens to also love people and have a lively social circle. It is always tempting for me to fill spots in my schedule with people I want to see and talk to. But recently, thanks to this awful illness, I've had room (or given myself room) to not do that quite so much. Or... to be honest... when I've accidentally gotten that room, I've enjoyed it so deeply and richly that I really have to take notice.
I am a really good truck loader. This is one of my super powers as anyone who knows me will attest. And I tend to treat my time in the same way as I treat my space. Oh! Here's a little corner that EXACTLY fits the box that I have over on that side of the garage... I'll put it in there! That makes me happy. A good tight fit makes me very very happy.
So I do the same with time. Oh! I have about 45 minutes. I'll call this dear friend who lives oh so close by and we can catch coffee, or chat on the phone while I drive, or I'll pay my bills, or I'll take a little detour and do this other errand that I haven't gotten to for awhile. And that makes me happy. A good tight schedule of time well spent taking care of biz, makes me very very happy.
Or... does it? It may feel good and productive, but the wellsprings start to dry up, I think, with that kind of mentality. Events in time tend to benefit from a little breathing room. A well-packed garage or a truck may not exactly be the metaphor we want to go for when it comes to planning our lives. We may want to look more at rock gardens, or beautiful rooms, where each object has a beauty of its own, and benefits from room and an opportunity to enjoy it.
A little less time contamination. A little more space. Let's see how that works.
I only heard a few minutes on the radio, but it resonated (of course) with me. I don't think you need to have young children around or even a high pressure fancy job to feel the crunch. She gave some statistics: the US is extreme in its work hours, expecting and getting far more than most other countries in the world; in our culture we gauge status by our busy-ness not by our leisure time; add to this the influx of technological ways to encroach on our every waking hour, and it's a easy recipe for feeling overwhelmed and under productive.
I did like the time contamination idea, especially. For me, even going on vacation seems somewhat overwhelming because the time contamination before and after is huge. The stress of getting all the ducks in row prior to leaving, combined with the stress of putting them all back in a row after getting back... nearly (but not completely) makes the R&R of the time off itself a wash.
Now, granted, I'm a person who gets her ducks in a row, or tries to. That's important to me. But I don't think this is a requirement for feeling this way. Whether you are or aren't a duck herder, I think the list on everyone's mind is far longer than we feel comfortable with. How to put that list away, or how to cull it down, or how to just get enough uncontaminated time in one's life to make it not seem so completely un-doable?
I was thinking about this during another solo walk this morning, and I realized that alone time, solo time, is absolutely essential. I am a fundamental introvert who happens to also love people and have a lively social circle. It is always tempting for me to fill spots in my schedule with people I want to see and talk to. But recently, thanks to this awful illness, I've had room (or given myself room) to not do that quite so much. Or... to be honest... when I've accidentally gotten that room, I've enjoyed it so deeply and richly that I really have to take notice.
I am a really good truck loader. This is one of my super powers as anyone who knows me will attest. And I tend to treat my time in the same way as I treat my space. Oh! Here's a little corner that EXACTLY fits the box that I have over on that side of the garage... I'll put it in there! That makes me happy. A good tight fit makes me very very happy.
So I do the same with time. Oh! I have about 45 minutes. I'll call this dear friend who lives oh so close by and we can catch coffee, or chat on the phone while I drive, or I'll pay my bills, or I'll take a little detour and do this other errand that I haven't gotten to for awhile. And that makes me happy. A good tight schedule of time well spent taking care of biz, makes me very very happy.
Or... does it? It may feel good and productive, but the wellsprings start to dry up, I think, with that kind of mentality. Events in time tend to benefit from a little breathing room. A well-packed garage or a truck may not exactly be the metaphor we want to go for when it comes to planning our lives. We may want to look more at rock gardens, or beautiful rooms, where each object has a beauty of its own, and benefits from room and an opportunity to enjoy it.
A little less time contamination. A little more space. Let's see how that works.
Saturday, May 17, 2014
Right here, right now
I had the opportunity to take a solo walk through Descanso Gardens this week and used the time to do a short meditation practice.
Meditation is somewhat frightening to me these days as everything is so very raw and present; focusing more on it just does not seem inviting or relaxing. With that in mind, I tried to go into it with a huge extra dose of self-compassion, giving myself all sorts of permission to be afraid, and an invitation to use the time to get grounded and centered and find the ever-elusive present moment.
One of the things I'm dealing with, of course, is this unusual knowledge of an uncomfortable near future. We walk around and know intellectually that we will experience pain and loss and die in our lives. But our saving grace is that (usually) we don't know when or how much or exactly what the profile of those very painful things will look like.
Going into chemo therapy in a matter of days does not give me the grace of putting this knowledge of an ordeal off into the unknowable future. It's happening. There is much coming up that I will have to face, both known and unknown. There are countless stories of all the ways that I might suffer during the next four months. There are lists of miseries that I might have to deal with, an assortment of physical fates that look just terrible when cataloged and detailed. Some of these may happen, none of these, we don't know. I find myself wondering if the simple act of cataloging and detailing makes the list worse: if I were to list all the things that are going wrong right now, would it seem worse that I actually feel? How do you list all the things that are going right? How do you assess and list things like "yeah, I feel like shit here and here and here, but overall I feel like ME and I have a sense of humor and my well being is like a 5 on a scale of 10"? Or, even, "I feel like shit right now but I know I'll feel better and I just need to get through the next 20 minutes and I'll be OK."
So I know and I don't know what's coming up. This is absolutely delicious fodder for the worried mind. I spin and spin and spin, much like I did before my surgery. In x days this will be hurting, or this will be happening, or this won't be there any more. It's really a pernicious pergatory.
With that in mind (ah, literally) my goal for my little sitting practice was just to try to settle down. Because, right here, right now, I was fine. I was sitting by a waterfall, the breeze was lovely against my cheek, my pain level was very manageable: it was a beautiful warm morning in the world, and all I had to do in the present moment was just be there.
So I started a little breathing mantra. Very simple: Right here, right now, I'm fine. Over and over. And it helped a little bit. And as I did that I started getting this image of lines of green light emanating between me and my various friends and family, both near and far. The line of green light started at their hearts, and as I named each one of my friends and family I gathered the lines into my hand. My brother and his wife up north. My mother down south. My friend Gail in the UK. Roger, Spencer, and Taylor at home. My people at work. My people in the opera company. Writing colleagues. Dear college friends. High school friends. My amazing martial arts community. An accumulation of green lines, representing all the people I love and whom I know are supporting me.
As I accumulated these green strands of light, two things happened. First, I started to feel the incredible support from so many areas around me. Then, I realized I was holding all of these in my hand.. and that maybe I didn't need to do that. That maybe it's not a question of my holding these lines of love and light like reins, but maybe the light could just attach back to my heart... and I did not have to be in charge of the connections. Maybe I could just connect. Without doing the work, without holding the energy. Just by being and acknowledging.
It was subtle and powerful. Connecting the lines, heart to heart, made a huge difference. It was now almost as though I were literally supported by this web of green light. I didn't have to do anything... it was just there. Keeping me upright, keeping me together. Fusing us all, back and forth, into this interconnected web.
Right here, right now, I'm fine. It occurred to me that, at all but that very last moment, this is going to be mostly true for most of our lives. And then I thought, well, we don't even know what that very last moment will be like, for sure. Maybe we'll fine right then as well, as we transition to something else, perhaps. And we may actually become more fine than we have been, shedding our broken physical shells and escaping to some other plane. We know, and yet we don't know. All we have, for sure is the being right now, and those strands of green light connecting our troubled, searching, weary, and very much caring souls together.
Meditation is somewhat frightening to me these days as everything is so very raw and present; focusing more on it just does not seem inviting or relaxing. With that in mind, I tried to go into it with a huge extra dose of self-compassion, giving myself all sorts of permission to be afraid, and an invitation to use the time to get grounded and centered and find the ever-elusive present moment.
One of the things I'm dealing with, of course, is this unusual knowledge of an uncomfortable near future. We walk around and know intellectually that we will experience pain and loss and die in our lives. But our saving grace is that (usually) we don't know when or how much or exactly what the profile of those very painful things will look like.
Going into chemo therapy in a matter of days does not give me the grace of putting this knowledge of an ordeal off into the unknowable future. It's happening. There is much coming up that I will have to face, both known and unknown. There are countless stories of all the ways that I might suffer during the next four months. There are lists of miseries that I might have to deal with, an assortment of physical fates that look just terrible when cataloged and detailed. Some of these may happen, none of these, we don't know. I find myself wondering if the simple act of cataloging and detailing makes the list worse: if I were to list all the things that are going wrong right now, would it seem worse that I actually feel? How do you list all the things that are going right? How do you assess and list things like "yeah, I feel like shit here and here and here, but overall I feel like ME and I have a sense of humor and my well being is like a 5 on a scale of 10"? Or, even, "I feel like shit right now but I know I'll feel better and I just need to get through the next 20 minutes and I'll be OK."
So I know and I don't know what's coming up. This is absolutely delicious fodder for the worried mind. I spin and spin and spin, much like I did before my surgery. In x days this will be hurting, or this will be happening, or this won't be there any more. It's really a pernicious pergatory.
With that in mind (ah, literally) my goal for my little sitting practice was just to try to settle down. Because, right here, right now, I was fine. I was sitting by a waterfall, the breeze was lovely against my cheek, my pain level was very manageable: it was a beautiful warm morning in the world, and all I had to do in the present moment was just be there.
So I started a little breathing mantra. Very simple: Right here, right now, I'm fine. Over and over. And it helped a little bit. And as I did that I started getting this image of lines of green light emanating between me and my various friends and family, both near and far. The line of green light started at their hearts, and as I named each one of my friends and family I gathered the lines into my hand. My brother and his wife up north. My mother down south. My friend Gail in the UK. Roger, Spencer, and Taylor at home. My people at work. My people in the opera company. Writing colleagues. Dear college friends. High school friends. My amazing martial arts community. An accumulation of green lines, representing all the people I love and whom I know are supporting me.
As I accumulated these green strands of light, two things happened. First, I started to feel the incredible support from so many areas around me. Then, I realized I was holding all of these in my hand.. and that maybe I didn't need to do that. That maybe it's not a question of my holding these lines of love and light like reins, but maybe the light could just attach back to my heart... and I did not have to be in charge of the connections. Maybe I could just connect. Without doing the work, without holding the energy. Just by being and acknowledging.
It was subtle and powerful. Connecting the lines, heart to heart, made a huge difference. It was now almost as though I were literally supported by this web of green light. I didn't have to do anything... it was just there. Keeping me upright, keeping me together. Fusing us all, back and forth, into this interconnected web.
Right here, right now, I'm fine. It occurred to me that, at all but that very last moment, this is going to be mostly true for most of our lives. And then I thought, well, we don't even know what that very last moment will be like, for sure. Maybe we'll fine right then as well, as we transition to something else, perhaps. And we may actually become more fine than we have been, shedding our broken physical shells and escaping to some other plane. We know, and yet we don't know. All we have, for sure is the being right now, and those strands of green light connecting our troubled, searching, weary, and very much caring souls together.
Monday, May 12, 2014
What it's going to be like
Now that I am almost seeing the light of day after the surgery, I am gearing up for chemo. It's not scheduled to start until the week after
Memorial Day so I still have some breathing room.
Just as before the surgery, my time spent ramping up to the chemo is spent playing incessant What If scenarios. I have to keep telling myself that I feel different every day: next week will be hugely different from this week; the week after will be far different still. Which means I can't accurately predict anything, not that I could anyway.
My best secondary therapy is going to be hormonal therapy because the tumors tested very hormone positive, which meant they love that estrogen. This means that it's possible the chemo will have small to maybe no benefit. Possibly. But we don't know.
This messes with my head. I want my doctor to crunch the
specific numbers and I want to know what I'm buying for the risk. The
temporary side effects I can deal with. I will grieve the hair loss a
lot. But if it's all just temporary and I buy myself some good numbers,
ok, I'm in. But... If I could lose the use of my fingers and feet, or I
could injure my heart or bones, just for a statistical advantage that
really doesn't mean anything concrete anyway... I have to really think
about that. It's weighing one set of unknown variables and
probabilities against another set and, at the end of the day, I just
don't know when that bullet with my name on it will come my way. Or
whether it will have anything remotely to do with breast cancer.
The statistics are not reality, of course. They
would only make sense if you could clone 20,000 of me, and then throw a single variable at them. At that point I'd have
a valid probability curve for myself as an individual. But that isn't
possible. For all these people on all these studies there are wide
variations of lifestyle, attitude, age and other variables. So I'm sure
the math works out statistically in broad strokes, but in terms of predicting for me, specifically? I wonder.
I wonder a lot. What will it be like to lose my hair? We walked by a beautiful African American woman today, wearing a beautiful shawl and skirt and some fabulous jewelry and sporting a shaved head and I thought, damn, if I looked THAT good I'd be totally down with this thing. But most of the time I think about it and grieve.
How will I respond to the chemo? I just don't know. Will something happen that I'll regret? Is there stuff I don't know about that I will have to find out the hard way? I don't know those answers yet either.
Crazymaking. I'm a Virgo (as my fellow Virgo friends like to point out) and we Virgos like organization. We like to pretty much know what's coming down the pike next. But in this situation, with everything jumping out at me like a fun house arcade, I just don't have a clue.
But I have been doing this now for almost two months. I have a bit of a track record with chaos and can maybe guess how things work in this new upsidedownland I'm in.
Take the mastectomy itself. For the month before the surgery, I was just aching with grief over my soon-to-be-removed body part. It was my sacrificial lamb, the part of me I was going to have to give up to live longer. It had served its first purpose for nourishing my children a long time ago. And now I would give it up once again to keep taking care of them.
After the surgery, I couldn't look at the scar. But, when I finally did... it was (almost) fine. Really. Yes, it was different, but I was still ME. I was still intact. That area was still a part of me. And... thanks to a bit of reconstruction... it will be a part of me that I will have earned laboriously and of which I will feel very happy and proud.
Walking around, I did not feel mutilated or less than. In a really weird, but kind of sweet way... half of me felt eight years old again. With that kind of freedom that a little kid has in the chest area. It felt like the days when I could wear little sun suits and not worry about conspicuous bobbling and jiggling. I mean, sure I would've preferred not to have this happen. But my reaction after the fact was extremely surprising: I am actually OK with this. (And as Roger pointed out, if I wanted to go for that sex change operation, boy, I'm already a third of the way there.)
It's all about the way we look at it in real time.
It's all about the way we look at it in real time.
So who knows what my reaction will be to anything? I don't, that's for sure. I think it will be one way, and it's always something completely different. The first two weeks after surgery were relatively peaceful, but now I'm getting walloped when I'm feeling better. Go figure! Who knew?
Gotta live in the uncertainty, man. As this blog is named... we have to live into the answer. We just don't know how anything is. It's nerve wracking. It is SO annoying to us Virgos. We can't organize this thing into predictability.
All I can do it take every minute, every moment, and try to deal with it as it really is. That is actually plenty challenging. We don't know what it's going to be like. But.. given the option of time travel...would we really want to go into the future? I think not. I really think not. The only way to find out what it's going to be like is the old fashioned way: step by step, moment by moment, breath by breath.
Saturday, May 10, 2014
Castles burning
I am in hell. I am in the hell that afflicts two year olds and 15 year olds and 90 year olds. I am in the hell that afflicts people whose brains are ready to do things but their bodies can't keep up.
I am feeling better. Much better. I have been doing stretching exercises for about a week and the difference has been profound. My need for pain meds has decreased radically. My ability to actually get around in the world, using both hands and arms, has increased to a point where I rarely need to compensate for my clipped wing. The relief from constant pain is fantastic; it no longer consumes my brain and I no longer watch the clock closely waiting for the next opportunity to throw something into my body hoping it will do the trick.
So what's the problem, Kathy?
The problem is that I'm feeling better. And with that feeling better comes the awareness that there are things that I need to do. Life things. Admin things. Help around the house things. Bill paying things. Work things. Side job things. The mountain of responsibilities has not diminished while I've been sitting around taking pain killers. Instead, it's grown. And as I've been feeling better, I've been trying to gently ease back into the slow lane of life, taking up some of the slack once again.
Hell.
It's hell. I see what needs to be done. I feel its weight crushing down on me. I have emails and folders and maintenance tasks, all staring me in the face. I LITERALLY have a DOG staring me in the face as well. (Sam has become very fond of our twice-daily walks.) I have this whole wonderful vast life I lead... just... waiting for me to take it on a walk, and maintain it, and come back to it.
And I just can't. I don't have the juice. I just don't have the juice for self care and self maintenance and household maintenance and work maintenance and anything maintenance. I have maybe two hours in me before I feel crushed by fatigue and depression and helplessness. I then sleep for two hours. I then wake up and try to do something, and then in an hour I'm crushed again. Then I try to push through it and in 15 minutes I am just ready to cry. And then in 5 minutes I do cry.
This is Kathy's version of hell. Being able to do it, and not being able to do it.
Now, I know. Everyone says just don't do so much. To which I say: great. Tell me how to do that. Please. Tell me how to do that. I have offloaded everything I can. Roger is doing all the housework, the cooking, the shopping, the laundry. I could not possibly do less around the house. I am working from home in tiny bits and pieces. I am trying, desperately, to disengage from as much as I can. But the disengaging takes energy and time. I am trying to delegate, but the delegating takes energy and time. It's like trying to run a machine on, like, an ounce of gasoline. It takes six hours to build up that ounce and then about half an hour to use it up. Do I use that ounce to tell someone else how to do something, or do I use it to actually just do the thing itself?
In the midst of this hell, comes a huge dollop of sadness verging on despair. I look at the eyes of my dog and think, god damn, this dog is going to die someday and I'm going to be filled with regret for every moment I did not spend walking him and doing the few very simple things that I am able to do make him profoundly content. I am suffused with the poignant pain of how transient this all is. We are all so beautiful and tough talking and so very very fragile. We have things growing in us, mortality creeping behind us like a constant shadow, and it will win. It will. We will say good bye to all the things we have ever loved before we're through with this. We will dance our last dance, we will type our last words, we will kiss our last kiss, we will breathe our last breath. This is a truth that we can never escape. And we're super good at not having to think about it constantly, otherwise I am sure we would go quite mad.
This is usually stuff that seeps through around 4 in the morning. But, in my current state, I am inundated with it constantly. This is the form this fatigue is taking: an acutely painful and constant awareness of my fragility and the futility of it all. I will never take care of myself well enough to avoid the inevitable, I will never walk Sam enough to show him how much I love him, I will never tell the people I love that I love them enough. I will never write enough words, listen to enough music, watch enough curtains opening, laugh enough with dear friends. It will never be enough.
Excruciating. All of this.
And as I was walking this morning a single word came into my mind. Followed by a few others. There is no antidote to these kinds of painful thoughts and feelings. But there are ways to get through. And the first word that came to me is kindness. Kindness, my god. If we could all be a tiny bit kinder, to ourselves and each other, how much better would we feel about all this darkness that we can barely keep at bay during daylight hours? Kindness. It would save us all so very much pain if we could just do a bit more of it.
And art. Art is the binding agent that gives this all some semblance of meaning. One of our great saving graces (and our greatest weakness) is this marvelous intuitive sensitive brain and heart of ours. Our creative souls weave stories and paint pictures and sing music and create plays about this time we have on the planet... and without that, what kind of spiritual void would we be forced to live within? Art. It makes it all almost tolerable.
And friends. Finally, the friends, the people. The social ties that give us people to talk to and cry on and argue with. What would we do without the people around us? We are all in this crazy boat together. We are linked profoundly and when one of us hurts, we all hurt. Which means when one of us heals, we all heal as well. For better or worse, we are all dancing the same dance.
So, please. Let's treat each other with a little more kindness. And revel in our abilities to create and enjoy art. And try to find meaning and laughter and even a certain macabre delight in this somewhat horrible and beautiful hand we've been dealt.
I am feeling better. Much better. I have been doing stretching exercises for about a week and the difference has been profound. My need for pain meds has decreased radically. My ability to actually get around in the world, using both hands and arms, has increased to a point where I rarely need to compensate for my clipped wing. The relief from constant pain is fantastic; it no longer consumes my brain and I no longer watch the clock closely waiting for the next opportunity to throw something into my body hoping it will do the trick.
So what's the problem, Kathy?
The problem is that I'm feeling better. And with that feeling better comes the awareness that there are things that I need to do. Life things. Admin things. Help around the house things. Bill paying things. Work things. Side job things. The mountain of responsibilities has not diminished while I've been sitting around taking pain killers. Instead, it's grown. And as I've been feeling better, I've been trying to gently ease back into the slow lane of life, taking up some of the slack once again.
Hell.
It's hell. I see what needs to be done. I feel its weight crushing down on me. I have emails and folders and maintenance tasks, all staring me in the face. I LITERALLY have a DOG staring me in the face as well. (Sam has become very fond of our twice-daily walks.) I have this whole wonderful vast life I lead... just... waiting for me to take it on a walk, and maintain it, and come back to it.
And I just can't. I don't have the juice. I just don't have the juice for self care and self maintenance and household maintenance and work maintenance and anything maintenance. I have maybe two hours in me before I feel crushed by fatigue and depression and helplessness. I then sleep for two hours. I then wake up and try to do something, and then in an hour I'm crushed again. Then I try to push through it and in 15 minutes I am just ready to cry. And then in 5 minutes I do cry.
This is Kathy's version of hell. Being able to do it, and not being able to do it.
Now, I know. Everyone says just don't do so much. To which I say: great. Tell me how to do that. Please. Tell me how to do that. I have offloaded everything I can. Roger is doing all the housework, the cooking, the shopping, the laundry. I could not possibly do less around the house. I am working from home in tiny bits and pieces. I am trying, desperately, to disengage from as much as I can. But the disengaging takes energy and time. I am trying to delegate, but the delegating takes energy and time. It's like trying to run a machine on, like, an ounce of gasoline. It takes six hours to build up that ounce and then about half an hour to use it up. Do I use that ounce to tell someone else how to do something, or do I use it to actually just do the thing itself?
In the midst of this hell, comes a huge dollop of sadness verging on despair. I look at the eyes of my dog and think, god damn, this dog is going to die someday and I'm going to be filled with regret for every moment I did not spend walking him and doing the few very simple things that I am able to do make him profoundly content. I am suffused with the poignant pain of how transient this all is. We are all so beautiful and tough talking and so very very fragile. We have things growing in us, mortality creeping behind us like a constant shadow, and it will win. It will. We will say good bye to all the things we have ever loved before we're through with this. We will dance our last dance, we will type our last words, we will kiss our last kiss, we will breathe our last breath. This is a truth that we can never escape. And we're super good at not having to think about it constantly, otherwise I am sure we would go quite mad.
This is usually stuff that seeps through around 4 in the morning. But, in my current state, I am inundated with it constantly. This is the form this fatigue is taking: an acutely painful and constant awareness of my fragility and the futility of it all. I will never take care of myself well enough to avoid the inevitable, I will never walk Sam enough to show him how much I love him, I will never tell the people I love that I love them enough. I will never write enough words, listen to enough music, watch enough curtains opening, laugh enough with dear friends. It will never be enough.
Excruciating. All of this.
And as I was walking this morning a single word came into my mind. Followed by a few others. There is no antidote to these kinds of painful thoughts and feelings. But there are ways to get through. And the first word that came to me is kindness. Kindness, my god. If we could all be a tiny bit kinder, to ourselves and each other, how much better would we feel about all this darkness that we can barely keep at bay during daylight hours? Kindness. It would save us all so very much pain if we could just do a bit more of it.
And art. Art is the binding agent that gives this all some semblance of meaning. One of our great saving graces (and our greatest weakness) is this marvelous intuitive sensitive brain and heart of ours. Our creative souls weave stories and paint pictures and sing music and create plays about this time we have on the planet... and without that, what kind of spiritual void would we be forced to live within? Art. It makes it all almost tolerable.
And friends. Finally, the friends, the people. The social ties that give us people to talk to and cry on and argue with. What would we do without the people around us? We are all in this crazy boat together. We are linked profoundly and when one of us hurts, we all hurt. Which means when one of us heals, we all heal as well. For better or worse, we are all dancing the same dance.
So, please. Let's treat each other with a little more kindness. And revel in our abilities to create and enjoy art. And try to find meaning and laughter and even a certain macabre delight in this somewhat horrible and beautiful hand we've been dealt.
Wednesday, May 7, 2014
How well we mask it
They ask me a lot these days about my pain level. On a scale of 1 - 10, with one being none and 10 being the worst pain ever, where am I at right now?
And, this kind of stumps me.
At first I attributed this to my being a technical writer. I immediately wanted to know if the gradations were arithmetic or logarithmic. Not that I strictly know the difference (and yes, I've just restrained myself from looking it up on wikipedia). But I want to know if they mean that the distance between 3 and 4 is the same as between 6 and 7 (like it would be on a ruler)? Or is it more like the Richter scale -- where an 8 point earthquake is, like, 100 bigger than a 7 point earthquake? That's where my brain goes first: can we please define our units of measurement?
But of course I don't say this out loud. I have enough problems as it is without them thinking I'm a left brain nut job as well.
So I answer with a number that is kind of calculated to 1) make me not sound like a wussy while 2) still getting me some pretty good pain pills.
This is true.
Most of the time that's how I come up with an answer.
But I realized after a few days of this that it would really be a good idea to know how much pain I am in, especially as I'm pretty much in charge of my own medicinal management these days. I do feel better when I feel better. I just don't have a good clue as to how I actually feel.
When I was in the hospital and being asked this all the time, I realized that the more I turned my brain to the area that was hurting, the more elusive the answer to how much pain I was in became. It became something... quantum. Something Schrödinger's cat. Something about looking at the thing causing the thing itself to change. The car at the mechanic's suddenly losing that annoying ping.
I didn't know how to really deal with that. Asking me how I felt right now usually made the pain completely go away. Or I'd start answering with how it felt if I were moving, which I wasn't. I am WAY too literal, as I'm sure you've all figured out. So I would go back to the default answer, stay within the 4 - 6 ranges, and just... kind of... make something up.
But then something interesting happened. I started to notice that the answer lay in my teeth of all places. The more I hurt, the more my teeth clench up. When I would have these happy blissed out Percoset naps, my jaw was light and carefree and relaxed. The more a medication wore off, the closer my teeth came together, until they were clenching and my jaw was tight.
Interesting.
For some reason, I found no answer when I was looking at the thing itself, but I could look at my teeth and actually get a reading that did not evaporate the second I checked it out. Ever since then I could pretty much assess where I really was on the pain scale and then act accordingly.
It struck me yesterday how absolutely skillful I am (how we all are, I'm guessing) at masking our pain. Pain is an amazingly useful indicator of things that are important to us. It triggers fight or flight. It tells us when to stop. It tells us where we need to take care of ourselves.
But in our daily rushing around, driven by that little guy in the brain, sometimes pain is just ... well... a pain in the ass. It is something to be gotten through, ignored. Pain is for wussies, unless we're at the gym, at which point we are supposed to court and solicit it, otherwise we're not doing our workout right.
We are adrenaline junkies. At least I am. A little bit of adrenaline goes a long way to mask these uncomfortable feelings, enables us to fly or stay and punch it out, enables us to get out of the tiger's cave before we realize our leg has been chewed halfway off. And we use that pump of adrenaline liberally, unconsciously.
Where do I hurt? Beats me, let's get back to the job at hand.
Where do I hurt? It will go away, don't be a baby.
Where do I hurt... not only physically, but emotionally? Spiritually? We don't even want to go there.
It's a little bit weird. And scary. And unnerving. Even when it's in our own best interest, it's sometimes hard to know exactly where we stand on matters that are a little bit dark, that expose a little bit of vulnerability. Far easier to mask it, to ignore it, than to admit it.
We are very skilled indeed.
I'm grateful for my teeth. I'm very happy that I figured that secondary measurement out. I'm thinking there may be other tells like that, maybe for emotional pain, or spiritual starvation. Snapping at people you love may be a tell. Eating without tasting may be a tell. Drinking to numb may be a tell. The colors leeching out of the world until everything is a monochrome may be a tell.
Maybe we just can't look at the thing itself for answers. Maybe most of us are still too unenlightened to see everything the way it is just at this moment. But this is all important information. Important enough that maybe it's worth it to find the secondary measurements and pay attention to them.
And, this kind of stumps me.
At first I attributed this to my being a technical writer. I immediately wanted to know if the gradations were arithmetic or logarithmic. Not that I strictly know the difference (and yes, I've just restrained myself from looking it up on wikipedia). But I want to know if they mean that the distance between 3 and 4 is the same as between 6 and 7 (like it would be on a ruler)? Or is it more like the Richter scale -- where an 8 point earthquake is, like, 100 bigger than a 7 point earthquake? That's where my brain goes first: can we please define our units of measurement?
But of course I don't say this out loud. I have enough problems as it is without them thinking I'm a left brain nut job as well.
So I answer with a number that is kind of calculated to 1) make me not sound like a wussy while 2) still getting me some pretty good pain pills.
This is true.
Most of the time that's how I come up with an answer.
But I realized after a few days of this that it would really be a good idea to know how much pain I am in, especially as I'm pretty much in charge of my own medicinal management these days. I do feel better when I feel better. I just don't have a good clue as to how I actually feel.
When I was in the hospital and being asked this all the time, I realized that the more I turned my brain to the area that was hurting, the more elusive the answer to how much pain I was in became. It became something... quantum. Something Schrödinger's cat. Something about looking at the thing causing the thing itself to change. The car at the mechanic's suddenly losing that annoying ping.
I didn't know how to really deal with that. Asking me how I felt right now usually made the pain completely go away. Or I'd start answering with how it felt if I were moving, which I wasn't. I am WAY too literal, as I'm sure you've all figured out. So I would go back to the default answer, stay within the 4 - 6 ranges, and just... kind of... make something up.
But then something interesting happened. I started to notice that the answer lay in my teeth of all places. The more I hurt, the more my teeth clench up. When I would have these happy blissed out Percoset naps, my jaw was light and carefree and relaxed. The more a medication wore off, the closer my teeth came together, until they were clenching and my jaw was tight.
Interesting.
For some reason, I found no answer when I was looking at the thing itself, but I could look at my teeth and actually get a reading that did not evaporate the second I checked it out. Ever since then I could pretty much assess where I really was on the pain scale and then act accordingly.
It struck me yesterday how absolutely skillful I am (how we all are, I'm guessing) at masking our pain. Pain is an amazingly useful indicator of things that are important to us. It triggers fight or flight. It tells us when to stop. It tells us where we need to take care of ourselves.
But in our daily rushing around, driven by that little guy in the brain, sometimes pain is just ... well... a pain in the ass. It is something to be gotten through, ignored. Pain is for wussies, unless we're at the gym, at which point we are supposed to court and solicit it, otherwise we're not doing our workout right.
We are adrenaline junkies. At least I am. A little bit of adrenaline goes a long way to mask these uncomfortable feelings, enables us to fly or stay and punch it out, enables us to get out of the tiger's cave before we realize our leg has been chewed halfway off. And we use that pump of adrenaline liberally, unconsciously.
Where do I hurt? Beats me, let's get back to the job at hand.
Where do I hurt? It will go away, don't be a baby.
Where do I hurt... not only physically, but emotionally? Spiritually? We don't even want to go there.
It's a little bit weird. And scary. And unnerving. Even when it's in our own best interest, it's sometimes hard to know exactly where we stand on matters that are a little bit dark, that expose a little bit of vulnerability. Far easier to mask it, to ignore it, than to admit it.
We are very skilled indeed.
I'm grateful for my teeth. I'm very happy that I figured that secondary measurement out. I'm thinking there may be other tells like that, maybe for emotional pain, or spiritual starvation. Snapping at people you love may be a tell. Eating without tasting may be a tell. Drinking to numb may be a tell. The colors leeching out of the world until everything is a monochrome may be a tell.
Maybe we just can't look at the thing itself for answers. Maybe most of us are still too unenlightened to see everything the way it is just at this moment. But this is all important information. Important enough that maybe it's worth it to find the secondary measurements and pay attention to them.
Monday, May 5, 2014
Time management
I've been trying to gauge how much is too much in terms of scheduling and prioritizing my day. And I've come up with a couple of axioms.
Kathy's axiom #1: There is simply not enough time to do everything.
This may not be true for everyone. I don't get that. I don't get how anyone would have time to read enough, sleep enough, exercise enough, get the bills paid and the checkbook balanced, earn a living, run a household, create and maintain a civilized environment, spend time with friends and loved ones, travel to places old and new, think new thoughts, watch great content, watch birds, play music, laugh with friends, explore the natural world, revel in creative expression, experience great art and music... I mean, I don't know how anyone has enough time to even LIST the things you could do in this lifetime, let alone do them.
I guess there are people who truly believe that there aren't enough interesting things to do in the world and whose whole goal is to try to kill time to avoid boredom. This train of thought is not for them.
I also think there are a gifted few who find that they do have time to do everything they want to do, and can do all of it with a sense of ease and grace. I want to know their secret.
Kathy's axiom #2: You have to do the very best you can with the time available.
This goes back to the "nutrient rich" concepts that I started exploring a few blogs ago. I maintain that the best way to be healthy and happy is to make sure that the body, mind, and soul are kept well nourished in equal balance. A life lived solely in the brain, is going to be starving on the soul level. Balance and harmony, and a rich mix of nourishment in all three areas... that's what I think we're going for. And in order to do this, we have to figure out how to best use the time we've got during our days and lives.
So, how to choose what to do? In my earlier blogs I classified things as feeding the body, mind, and soul, and also added two categories: Unavoidable Other tasks and Avoidable Other tasks.
Unavoidable Other tasks are things like, well, going to the DMV. Unless you are very different from most people, going to the DMV is not highly nutritious in terms of feeding body, mind, or soul. It is also sometimes, alas, unavoidable. Gotta be done.
Avoidable Other tasks are things like getting caught in situations and commitments that no longer feed your body, mind or spirit. Baggage activities or thoughts that should be offloaded. Mindlessly repetitive tasks. Habitual things that don't really maybe need to be done in quite the way you've always done them, but maybe can be done faster, or in a less complex manner, or maybe even not at all.
I am failing frequently while trying to get the mix right these days. My fuel tank is so low on reserves that I now watch every action and interaction scrupulously. I'm finding that it's more tiring to talk than to type (which is interesting, because it means my obviously outward social nature is actually less important to my well being than my quieter introverted side). I'm finding that I can cut down on small processes that add up into large wastes of time. I'm finding that taking care of the less easy needs early in the day (like exercising) gets those activities out of the way and I can treat myself at the end of the day with some easier soul-replenishing reading or viewing of good content.
Most important, I'm finding that being very clear about stating and maintaining boundaries is absolutely vital.
I have many pulls on my time these days. I am working from home, as able. That is a high priority activity, and is worthy for more than just my paycheck. It keeps my brain engaged. (And the most fun part is that I get to have high intensity arguments and discussions about things that are SO far from the other conversations I am having. These meetings are about process and concepts and have absolutely nothing to do with life expectancy or levels of pain. But people approach everything with such fervor and intensity! I love it!) I have an almost daily trip to the doctor or lab or clinic or procedure. I need to make sure I exercise and keep rested. My close family still needs my input and support and time. I am writing more. I am trying to keep my mother calm as she worries and frets about me. There's a lot going on. How do I budget my time? How much of my work time do I spend catching up on interoffice politics, and how much can I shut out to simply focus on the work at hand? Which is more important, truly? The personal or the productivity; they are both vital.
A far trickier question is how to deal with friends --- their messages and offers to help. I don't know the answer to this. I firmly believe that the connections we make with other people are one of the most important aspects to this time we spend on the planet. They give us hope and joy and meaning. In no way could I be as happy as I am in my life without my great good friends, both the ones I see daily and the ones less frequently.
Some days I don't have the energy to respond. Some emails have gotten lost in the shuffle for awhile. There are people who have given me wonderful notes or flowers or messages, that I have not properly thanked ( or at least it feels like I haven't). I feel terrible for not being an amazingly good friend back. Because I am so grateful. And because it is so overwhelming.
I've gotten very good at saying thank you very much. I've learned to not sign off with "let's get together soon" knowing that my resources for making good on a date are limited and will remain so for a good long while. For offers of help, I say that for now I'm good, but I really appreciate your offer. I think that's the best I can do right now. I hope very much that I'm not perceived as being rude by sometimes not answering calls or responding.
I worry about how to manage all this when I'm well again. How do I keep all my boundaries graciously and well maintained? I want my people. I want my activities. I want my life back. But it was too much. There wasn't enough non-doing time in the middle. I absolutely need to build that in. I worry that I won't know how to do this and will fall back into my over extended, feeding the world before I feed myself mode of being.
How to earn a living and stay true to responsibilities? How to keep the car maintained and the house intact and the taxes filed and the bills paid and the kids supported and the dog walked? How to maintain close and vital ties, while still having time to be silent and read? How to take care of the list while still having time to ruminate and move a little aimlessly through the world? How to take care of all the Unavoidable Other tasks while still putting mind, body, and soul as a high priority? How to pare down the Avoidable Other time in a way that makes sense?
For now, I am trying to get a grip on it all. I put myself on a stopwatch to track my time working. I am watching how much time I spend chasing technological rabbits down rabbit holes (i.e., getting my printer to work from my laptop; time spent yesterday: 45 minutes.). I am watching all this like an efficiency expert, trying to figure out how to get a rich healthy balanced life in the middle of a world in which there really is not time to do a fraction of all we'd like or need to get done.
I don't know how to square all this. I really don't. But here's what I've been playing with. I am now starting each day with a list that answers the following questions:
I am trying to be very honest about what I term "mandatory."
I am trying to listen hard to what my body, mind, soul is craving.
I am trying to cut myself some slack if the "non-mandatory tasks that feel almost mandatory but aren't really mandatory" don't get done.
So far... so good, I guess. I had a good Monday. We'll see how tomorrow goes.
Kathy's axiom #1: There is simply not enough time to do everything.
This may not be true for everyone. I don't get that. I don't get how anyone would have time to read enough, sleep enough, exercise enough, get the bills paid and the checkbook balanced, earn a living, run a household, create and maintain a civilized environment, spend time with friends and loved ones, travel to places old and new, think new thoughts, watch great content, watch birds, play music, laugh with friends, explore the natural world, revel in creative expression, experience great art and music... I mean, I don't know how anyone has enough time to even LIST the things you could do in this lifetime, let alone do them.
I guess there are people who truly believe that there aren't enough interesting things to do in the world and whose whole goal is to try to kill time to avoid boredom. This train of thought is not for them.
I also think there are a gifted few who find that they do have time to do everything they want to do, and can do all of it with a sense of ease and grace. I want to know their secret.
Kathy's axiom #2: You have to do the very best you can with the time available.
This goes back to the "nutrient rich" concepts that I started exploring a few blogs ago. I maintain that the best way to be healthy and happy is to make sure that the body, mind, and soul are kept well nourished in equal balance. A life lived solely in the brain, is going to be starving on the soul level. Balance and harmony, and a rich mix of nourishment in all three areas... that's what I think we're going for. And in order to do this, we have to figure out how to best use the time we've got during our days and lives.
So, how to choose what to do? In my earlier blogs I classified things as feeding the body, mind, and soul, and also added two categories: Unavoidable Other tasks and Avoidable Other tasks.
Unavoidable Other tasks are things like, well, going to the DMV. Unless you are very different from most people, going to the DMV is not highly nutritious in terms of feeding body, mind, or soul. It is also sometimes, alas, unavoidable. Gotta be done.
Avoidable Other tasks are things like getting caught in situations and commitments that no longer feed your body, mind or spirit. Baggage activities or thoughts that should be offloaded. Mindlessly repetitive tasks. Habitual things that don't really maybe need to be done in quite the way you've always done them, but maybe can be done faster, or in a less complex manner, or maybe even not at all.
I am failing frequently while trying to get the mix right these days. My fuel tank is so low on reserves that I now watch every action and interaction scrupulously. I'm finding that it's more tiring to talk than to type (which is interesting, because it means my obviously outward social nature is actually less important to my well being than my quieter introverted side). I'm finding that I can cut down on small processes that add up into large wastes of time. I'm finding that taking care of the less easy needs early in the day (like exercising) gets those activities out of the way and I can treat myself at the end of the day with some easier soul-replenishing reading or viewing of good content.
Most important, I'm finding that being very clear about stating and maintaining boundaries is absolutely vital.
I have many pulls on my time these days. I am working from home, as able. That is a high priority activity, and is worthy for more than just my paycheck. It keeps my brain engaged. (And the most fun part is that I get to have high intensity arguments and discussions about things that are SO far from the other conversations I am having. These meetings are about process and concepts and have absolutely nothing to do with life expectancy or levels of pain. But people approach everything with such fervor and intensity! I love it!) I have an almost daily trip to the doctor or lab or clinic or procedure. I need to make sure I exercise and keep rested. My close family still needs my input and support and time. I am writing more. I am trying to keep my mother calm as she worries and frets about me. There's a lot going on. How do I budget my time? How much of my work time do I spend catching up on interoffice politics, and how much can I shut out to simply focus on the work at hand? Which is more important, truly? The personal or the productivity; they are both vital.
A far trickier question is how to deal with friends --- their messages and offers to help. I don't know the answer to this. I firmly believe that the connections we make with other people are one of the most important aspects to this time we spend on the planet. They give us hope and joy and meaning. In no way could I be as happy as I am in my life without my great good friends, both the ones I see daily and the ones less frequently.
Some days I don't have the energy to respond. Some emails have gotten lost in the shuffle for awhile. There are people who have given me wonderful notes or flowers or messages, that I have not properly thanked ( or at least it feels like I haven't). I feel terrible for not being an amazingly good friend back. Because I am so grateful. And because it is so overwhelming.
I've gotten very good at saying thank you very much. I've learned to not sign off with "let's get together soon" knowing that my resources for making good on a date are limited and will remain so for a good long while. For offers of help, I say that for now I'm good, but I really appreciate your offer. I think that's the best I can do right now. I hope very much that I'm not perceived as being rude by sometimes not answering calls or responding.
I worry about how to manage all this when I'm well again. How do I keep all my boundaries graciously and well maintained? I want my people. I want my activities. I want my life back. But it was too much. There wasn't enough non-doing time in the middle. I absolutely need to build that in. I worry that I won't know how to do this and will fall back into my over extended, feeding the world before I feed myself mode of being.
How to earn a living and stay true to responsibilities? How to keep the car maintained and the house intact and the taxes filed and the bills paid and the kids supported and the dog walked? How to maintain close and vital ties, while still having time to be silent and read? How to take care of the list while still having time to ruminate and move a little aimlessly through the world? How to take care of all the Unavoidable Other tasks while still putting mind, body, and soul as a high priority? How to pare down the Avoidable Other time in a way that makes sense?
For now, I am trying to get a grip on it all. I put myself on a stopwatch to track my time working. I am watching how much time I spend chasing technological rabbits down rabbit holes (i.e., getting my printer to work from my laptop; time spent yesterday: 45 minutes.). I am watching all this like an efficiency expert, trying to figure out how to get a rich healthy balanced life in the middle of a world in which there really is not time to do a fraction of all we'd like or need to get done.
I don't know how to square all this. I really don't. But here's what I've been playing with. I am now starting each day with a list that answers the following questions:
- What is mandatory to do today?
- What do I deeply WANT to do today? And what does that activity feed?
- What else do I need to do to fuel body, mind, and soul?
I am trying to be very honest about what I term "mandatory."
I am trying to listen hard to what my body, mind, soul is craving.
I am trying to cut myself some slack if the "non-mandatory tasks that feel almost mandatory but aren't really mandatory" don't get done.
So far... so good, I guess. I had a good Monday. We'll see how tomorrow goes.
Saturday, May 3, 2014
Unexpected grace
The other morning I received a lovely message from a dear friend of mine who lives in the UK. It was touching, and I felt so blessed by her thoughts, generating outwards towards me from so far away.
We don't get to talk to each other often, and we haven't seen each other in years. Roger and I visited her when we traveled through London on our honeymoon. She and I exchange messages from time to time. But there's always a sense, for me, that I have a sister out there, and that she's got my back psychically, as I have hers.
We worked together for only a few months at one of the most insane jobs I've ever had. Out of boredom and a sense of not being challenged enough, I had changed from one department to another within this huge IT group I had been with for years. The shift in stress and dysfunction was so staggering that I was in the hospital 10 days after starting the job. I had been stress eating a bag of trail mix after enduring the umpteenth antagonistic, hostile, unresolved meeting of the day, and by the time I got home I was doubled up in pain. I ended up writhing on the bathroom floor and was in surgery the next day; a piece of scar tissue had wrapped around an intestine and the influx of massive amounts of trail mix got me into a fix.
It was that kind of a job.
I met Gail while working on that team. She was a breath of fresh air and soon she, and another woman on the team, Lin, and I bonded tightly. We were foxhole comrades, finding our only solace from the incredibly bad working conditions in each other.
That was many years ago. We all quit that job in short order but we will always have that bond. And as I reread (and reread) her message the other morning, I thought back to those chaotic beginnings and realized again how often really amazingly good things tend to emerge from situations that we would almost always call extremely negative.
That surgery was an intense experience, much like the one I'm going through now. But by the time I was done recovering from that, I was open enough in mind and spirit to enter into a relationship with Roger. I was also clear enough from that experience to know exactly what I could and couldn't deal with, where my boundaries should be, and what I wanted from life. During that horrible time, I gained invaluable perspectives which I will treasure for the rest of my life, along with the friendships I forged.
Obviously, I don't and won't go out of my way to enter into intensely unpleasant and painful experiences. But when I'm gripped with fear at 4 a.m., assailed by a battery of "what if" thoughts, maybe it can help me get back to sleep to remember that it almost never is as bad as I project it is going to be, that there are many good moments interspersed with the bad ones, and that incredible grace is usually found in the most unexpected places.
We don't get to talk to each other often, and we haven't seen each other in years. Roger and I visited her when we traveled through London on our honeymoon. She and I exchange messages from time to time. But there's always a sense, for me, that I have a sister out there, and that she's got my back psychically, as I have hers.
We worked together for only a few months at one of the most insane jobs I've ever had. Out of boredom and a sense of not being challenged enough, I had changed from one department to another within this huge IT group I had been with for years. The shift in stress and dysfunction was so staggering that I was in the hospital 10 days after starting the job. I had been stress eating a bag of trail mix after enduring the umpteenth antagonistic, hostile, unresolved meeting of the day, and by the time I got home I was doubled up in pain. I ended up writhing on the bathroom floor and was in surgery the next day; a piece of scar tissue had wrapped around an intestine and the influx of massive amounts of trail mix got me into a fix.
It was that kind of a job.
I met Gail while working on that team. She was a breath of fresh air and soon she, and another woman on the team, Lin, and I bonded tightly. We were foxhole comrades, finding our only solace from the incredibly bad working conditions in each other.
That was many years ago. We all quit that job in short order but we will always have that bond. And as I reread (and reread) her message the other morning, I thought back to those chaotic beginnings and realized again how often really amazingly good things tend to emerge from situations that we would almost always call extremely negative.
That surgery was an intense experience, much like the one I'm going through now. But by the time I was done recovering from that, I was open enough in mind and spirit to enter into a relationship with Roger. I was also clear enough from that experience to know exactly what I could and couldn't deal with, where my boundaries should be, and what I wanted from life. During that horrible time, I gained invaluable perspectives which I will treasure for the rest of my life, along with the friendships I forged.
Obviously, I don't and won't go out of my way to enter into intensely unpleasant and painful experiences. But when I'm gripped with fear at 4 a.m., assailed by a battery of "what if" thoughts, maybe it can help me get back to sleep to remember that it almost never is as bad as I project it is going to be, that there are many good moments interspersed with the bad ones, and that incredible grace is usually found in the most unexpected places.
Thursday, May 1, 2014
The Numbers Game
We met the new oncologist this week. This is the guy who will be in charge of all secondary therapies (chemo, radiation, hormonal).
We liked him immediately. He feels like someone we would naturally already know. He's a year older than I am, so a year younger than Roger. It was a good and instant sympatico. Which is what you want in someone who is about to systematically poison you.
He laid it out clearly. The question is how much I want to improve my odds. The surgery itself increased my odds of being fully and completely cured by about 67%. The fact that it was found in the lymph nodes brought this number way down, unfortunately, from the original 98% that we had heard when we first talked to my surgeon. Still, as he pointed out, all things being equal, if there were three of us standing in a row, two of us would now be cured if nothing else happened.
That's promising.
The chemo, radiation, and hormonal therapies will give me 40% more of an edge over the remaining 33%. Meaning, I can add another 17% to my cure odds by throwing the other therapies into the mix... which brings me up to 80%. Ten of me in a line, 8 of us are now cured.
Better.
There's another rule to this game, however: we have to decide now. If the cancer recurs, it will probably come back someplace a lot less convenient (relatively). Like the bones, or the brain. So, we can't throw this stuff at it later. We have to assess the odds now, and then proceed to eradicate and destroy.
Can we know which therapy will add the most bang for the buck? It looks like my tumors are strongly hormone positive, which means they REALLY like eating estrogen. The hormonal therapy, which cuts out all estrogen from my body will be hugely effective. Yes, I'll be sapped of all the positive aspects of estrogen for five to ten years (and may end up looking like one of those pruny old people in Desert Hot Springs that I used to see when visiting my grandmother, so dessicated and ancient that you couldn't even tell whether they were men or women) (or not) (this would be an example of a bad story to tell myself) but... the cancer will be starved into oblivion.
The chemo will be something like 4 - 6 treatments, which is on the low end as far as these things go. He kept saying it would be manageable and not a big ordeal. But... there could be some side effects above and beyond the usual (nausea, vomiting, we didn't even get into hair loss). The side effect that stopped me cold was the neuropathy... numbness in the extremities, like my fingers.
Oh my fucking god. My FINGERS?
The fingers I WRITE with?
That prompted, and still prompts, a rush of tears to my eyes. To not be able to touch a keyboard? That cuts me to the quick. That actually makes me wonder how far I'd go to improve my numbers. If I knew this would happen, for sure... which I absolutely do not... but if I did... wow. What would life be like if I couldn't communicate to the world, and more importantly with myself, using the act of writing? I ... I would die inside.
Now. I do realize. Stephen Hawking. Voice to text software. It would not be the end of the world. I have frequently said that if I were stranded on a desert island, I would write with my finger in the sand. I would figure out a way.
But I learned a world about myself at that moment. That... given a choice between a longer life without the ability to write, and a shorter life with the ability to write... I would have to think about it. I would actually have to think.
Luckily, I don't have to make that decision. I will talk to him more about the odds about the neuropathy. How many get it? Of that number, how often is it permanent? He will give me some numbers and they will help me figure this out. Maybe we can go with a different regimen. It's also possible that, if that starts happening, I can bail midstream. He assured me that none of this is mandatory; all of it together increases my odds, but my odds are already pretty good. If I just can't handle any part of it, I can punt.
That helps a lot.
He's a sensitive guy. We did not go all the way down the rabbit hole for all three treatments. First up is chemo. He said we can totally wait a month to start. I desperately want to go on our annual Memorial Day Pursuit of Truth in the Company of Friends weekend up north. I should be up for that, and it will give me a much needed soul infusion that will carry me through at least a few treatments. We'll see how that goes. Next, I guess, is radiation. And then the hormonal treatment. And at the end of the day I'll have about an 80% chance, or better, of being done with this for the rest of my (hopefully long and creative) life.
The numbers are so comforting and solid, but if you look at them closely, they actually mean nothing. They put an overlay of reason over the fact that -- if there are three of you standing in a line -- you have NO idea if you're the third person, or one of the lucky two. You have NO idea if you're going to be the two in 10 after all the chemo and shit. You have NO idea if you're going to be the one in 1000 that gets the one really bad side effect of the hormonal therapy (a rare cancer that tragically killed one of my good friends a few years ago, after she used this drug for breast cancer about a decade prior).
The numbers are comforting if they are high. I am deeply grateful my numbers are as high as they are, as I know many people cling to their 5% numbers, hoping they can figure out a way to be the 1 person in a lineup of 20 who duck their particular bullet. But the numbers are just statistics. We don't know if we'll get hit by lightning, once or even twice. We just don't know.
The numbers serve to help us make decisions. We study racing forms and put money down to see if the ponies will perform according to their statistics or not. We use statistics to give ourselves courage to get in the car and drive to work in the morning. If we didn't have this construct of probability, we wouldn't have the guts to get out of bed in the morning. It would all be too random.
At the end of the day, the numbers are a way we try to know the unknowable. They are a way to weave a story, and stories... as we all know...are intensely useful. I do believe that the stories we tell ourselves about these things helps. I don't want to ever mention the Desert Hot Springs dessication image again... because that's an image I want to keep as far away from my psyche as possible. I would much rather tell myself stories about training for and riding a century on my bike with Spencer next year. I would much rather tell myself stories about sailing across the bay with my brother and his wife, seeing the city glittering before us like an array of jewels on the hills. I would much rather tell myself a story about being one of those 8 people in the lineup, living long past the current pain, doing yoga and writing and feeling that wild ecstatic health coursing through my body once again.
We liked him immediately. He feels like someone we would naturally already know. He's a year older than I am, so a year younger than Roger. It was a good and instant sympatico. Which is what you want in someone who is about to systematically poison you.
He laid it out clearly. The question is how much I want to improve my odds. The surgery itself increased my odds of being fully and completely cured by about 67%. The fact that it was found in the lymph nodes brought this number way down, unfortunately, from the original 98% that we had heard when we first talked to my surgeon. Still, as he pointed out, all things being equal, if there were three of us standing in a row, two of us would now be cured if nothing else happened.
That's promising.
The chemo, radiation, and hormonal therapies will give me 40% more of an edge over the remaining 33%. Meaning, I can add another 17% to my cure odds by throwing the other therapies into the mix... which brings me up to 80%. Ten of me in a line, 8 of us are now cured.
Better.
There's another rule to this game, however: we have to decide now. If the cancer recurs, it will probably come back someplace a lot less convenient (relatively). Like the bones, or the brain. So, we can't throw this stuff at it later. We have to assess the odds now, and then proceed to eradicate and destroy.
Can we know which therapy will add the most bang for the buck? It looks like my tumors are strongly hormone positive, which means they REALLY like eating estrogen. The hormonal therapy, which cuts out all estrogen from my body will be hugely effective. Yes, I'll be sapped of all the positive aspects of estrogen for five to ten years (and may end up looking like one of those pruny old people in Desert Hot Springs that I used to see when visiting my grandmother, so dessicated and ancient that you couldn't even tell whether they were men or women) (or not) (this would be an example of a bad story to tell myself) but... the cancer will be starved into oblivion.
The chemo will be something like 4 - 6 treatments, which is on the low end as far as these things go. He kept saying it would be manageable and not a big ordeal. But... there could be some side effects above and beyond the usual (nausea, vomiting, we didn't even get into hair loss). The side effect that stopped me cold was the neuropathy... numbness in the extremities, like my fingers.
Oh my fucking god. My FINGERS?
The fingers I WRITE with?
That prompted, and still prompts, a rush of tears to my eyes. To not be able to touch a keyboard? That cuts me to the quick. That actually makes me wonder how far I'd go to improve my numbers. If I knew this would happen, for sure... which I absolutely do not... but if I did... wow. What would life be like if I couldn't communicate to the world, and more importantly with myself, using the act of writing? I ... I would die inside.
Now. I do realize. Stephen Hawking. Voice to text software. It would not be the end of the world. I have frequently said that if I were stranded on a desert island, I would write with my finger in the sand. I would figure out a way.
But I learned a world about myself at that moment. That... given a choice between a longer life without the ability to write, and a shorter life with the ability to write... I would have to think about it. I would actually have to think.
Luckily, I don't have to make that decision. I will talk to him more about the odds about the neuropathy. How many get it? Of that number, how often is it permanent? He will give me some numbers and they will help me figure this out. Maybe we can go with a different regimen. It's also possible that, if that starts happening, I can bail midstream. He assured me that none of this is mandatory; all of it together increases my odds, but my odds are already pretty good. If I just can't handle any part of it, I can punt.
That helps a lot.
He's a sensitive guy. We did not go all the way down the rabbit hole for all three treatments. First up is chemo. He said we can totally wait a month to start. I desperately want to go on our annual Memorial Day Pursuit of Truth in the Company of Friends weekend up north. I should be up for that, and it will give me a much needed soul infusion that will carry me through at least a few treatments. We'll see how that goes. Next, I guess, is radiation. And then the hormonal treatment. And at the end of the day I'll have about an 80% chance, or better, of being done with this for the rest of my (hopefully long and creative) life.
The numbers are so comforting and solid, but if you look at them closely, they actually mean nothing. They put an overlay of reason over the fact that -- if there are three of you standing in a line -- you have NO idea if you're the third person, or one of the lucky two. You have NO idea if you're going to be the two in 10 after all the chemo and shit. You have NO idea if you're going to be the one in 1000 that gets the one really bad side effect of the hormonal therapy (a rare cancer that tragically killed one of my good friends a few years ago, after she used this drug for breast cancer about a decade prior).
The numbers are comforting if they are high. I am deeply grateful my numbers are as high as they are, as I know many people cling to their 5% numbers, hoping they can figure out a way to be the 1 person in a lineup of 20 who duck their particular bullet. But the numbers are just statistics. We don't know if we'll get hit by lightning, once or even twice. We just don't know.
The numbers serve to help us make decisions. We study racing forms and put money down to see if the ponies will perform according to their statistics or not. We use statistics to give ourselves courage to get in the car and drive to work in the morning. If we didn't have this construct of probability, we wouldn't have the guts to get out of bed in the morning. It would all be too random.
At the end of the day, the numbers are a way we try to know the unknowable. They are a way to weave a story, and stories... as we all know...are intensely useful. I do believe that the stories we tell ourselves about these things helps. I don't want to ever mention the Desert Hot Springs dessication image again... because that's an image I want to keep as far away from my psyche as possible. I would much rather tell myself stories about training for and riding a century on my bike with Spencer next year. I would much rather tell myself stories about sailing across the bay with my brother and his wife, seeing the city glittering before us like an array of jewels on the hills. I would much rather tell myself a story about being one of those 8 people in the lineup, living long past the current pain, doing yoga and writing and feeling that wild ecstatic health coursing through my body once again.
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