Doc Sez: Blood Work Good, Tumor Markers Down From 1200 to 400!
Now, just exactly what is being measured here is not entirely clear to me, but the layman's take-away appears to be that this is hard, scientific evidence that cancer is is less present in my system than heretofore. So-- Frabjous Day! Callooh! Callay! Let's chortle in our joy!
Good News, no doubt about it...
But... I don't know.
Things are going my way and I should maybe just shut up and be grateful.
Okay.
But.
(I must be feeling better, here comes the piss and vinegar.)
Okay... I just find it interesting that these blood tumor markers -- about whose dependability allopathic medicine was highly suspicious when my naturopath wanted to follow them thirteen years ago-- you know, during my very first brush with cancer, when I was looking for alternatives to the brutal cell-warfare that is chemo and radiation, aka "the standard practice"-- are NOW, at this stage of the game, treated like the very gospel.
Of course, I'm in the middle of Round Three, here. This is Stage 4 Breast Cancer. There is no Stage 5. The standard, proven, go-to treatments of chemo and radiation were 'gone-to' during Round Two and were found, in my particular case-- uh, what shall we say?-- Of Limited Effectiveness? So now maybe allopathic medicine is willing to reach a little further off the map, where before I was told, Beyond Here There Be Dragons.
It's just... interesting... I know that so much of this is educated guess work. Science is as much a narrative, an explanation, a story we tell ourselves to explain the world, as anything else. But the guesses, the stories that get the most study and hence might render the hard evidence that the AMA likes to see (and, not incidentally, the insurance companies-- don't get me started...) those are the stories, the guesses that someone can patent and sell. This cannot be surprising, can it?
And whatever those newest stories or guesses are, they have to be rigorously tested before they become standard practice. This only makes sense, right? We want our medicine to be safe. I get that. But.
I guess my question remains: How does this benefit those who are suffering here and now? And maybe more importantly: How does binding our model of healthcare to the profit motive benefit anyone?
Well, this is a long, long story, friends. The story of my own bewildering journey through the labyrinth of current medical practices, systems and institutions, the role of pharmaceutical companies, the effects of the air we breath, food we eat, water we drink, and the stress of modern life, the efficacy of pink ribbons and the mind-set they arise from and in turn support, the alternative world of alternative care, the wide range of doctor-patient relationships and of relationships between mind, body and spirit. It can't all get told here and now. But I look forward to trying to lay the pieces out for you bit by bit. Then maybe you can help me put the pieces together and make sense of the puzzle.
Here's what I discovered on my first pass through the medical maze: When it comes right down to it, it is shocking how little we know. (And we as a culture so value knowing.) Information is not wisdom. We all have to make the choices we believe are best-- and often it is in making those choices that we uncover what it is we believe. Our choices are a testament about how we think the universe works.
As for me, I am open to further research, further searching, further information, further not-knowing, further surprises and further discoveries. I respect intuition as well as proof. I have this strong hunch that in the end science and poetry are somehow made one. I guess that's how I think the universe works.
Saturday, December 18, 2010
Sunday, December 12, 2010
Things to be Grateful for:
Recently I have been grateful for the oddest things:
We are such delicate creatures, really. Our health and well-being depend on so many, many elements being in balance-- both within our own bodies, minds and spirits, and beyond that in the wide world of chance, or luck, or fate, or karma, as you will-- and we humans wildly over estimate our control over most of these things.
Here's my discovery about that: When I relinquish control over those things over which I never had any control in the first place, I feel a rush of liberation, and immediately on its heels, a flood of gratitude.
To be able to do one's own vacuuming-- what a gift!
In the spirit of the season, I wish for you, my friends, all the gifts of health. Even more precious, I wish you the gift of appreciating everything you have.
Slogging my own Christmas tree across a field of calf-deep, crusty, wet snow.
Making 11 trips up and down the stairs of the local food bank with boxes of canned goods.
Doing my own vacuuming. Yes, it took over a week of procrastination (some things never change), but I did it myself!I cannot tell you how grateful I am to be grateful for these ordinary gifts of a life without debilitating symptoms. I feel afresh for all those who are not free of such suffering.
We are such delicate creatures, really. Our health and well-being depend on so many, many elements being in balance-- both within our own bodies, minds and spirits, and beyond that in the wide world of chance, or luck, or fate, or karma, as you will-- and we humans wildly over estimate our control over most of these things.
Here's my discovery about that: When I relinquish control over those things over which I never had any control in the first place, I feel a rush of liberation, and immediately on its heels, a flood of gratitude.
To be able to do one's own vacuuming-- what a gift!
In the spirit of the season, I wish for you, my friends, all the gifts of health. Even more precious, I wish you the gift of appreciating everything you have.
Saturday, December 11, 2010
If It Be Your Will
“... songs are just the response to what struck me as beauty, whether they were a curious emanation from a being or an object or a situation or a landscape. That had a very powerful effect on me, as it does on everyone and I prayed to have some response to the things that were so clearly beautiful to me. And there were a lot.”
I got to spend An Evening with Leonard Cohen when he came to Portland this week. I was SO GLAD to be there. It was performance as prayer, as poetry. It was a gift, and the giver had such humility and gratitude, such a remarkable sense of presence. I would like to thank the universe for giving us Leonard Cohen, and thank Leonard Cohen for having the strength and grace to pass his gifts on to us.Leonard Cohen
76 years old, and still giving it all away on stage. What an inspiration. "Ring the bells that still can ring."
Friday, December 3, 2010
The Parable of the Dead Mouse
Before Thanksgiving, I was tootling around the house one morning, getting ready to head out the door when I spied-- and nearly stepped on -- a mouse in the TV/fireplace room. ( I actually said, Eeek!-- just like in the cartoons.)
I went into the kitchen thinking to find something to scoop him up with-- But what? And then what? Put him outside with a stern talking-to? I didn't know. I grabbed an old yogurt container from an overflowing shelf of same. (Yup, time for my friend Janet to visit and inquire oh-so-gently, Do you really want to keep all of these? But I digress...)
Armed with container, I march back to the TV room where I see the mouse in question. He is moving now, but certainly not scurrying. Can a mouse lumber? Perhaps my dog had been "playing" with the poor thing before I found him? Or-- gulp -- perhaps it is hugely pregnant? Because there is definitely something not right about this mouse. Lumber, pause. Lumber, pause. I watch, hesitant to scoop. Truthfully, I am scared of this little creature and of whatever will happen between us post-scooping.
Now he is under the coffee table, then, in a relative burst of near-scurrying, I see his tail disappear under the couch. Great. Now what? Well, I don't have time to chase this mouse, I gotta go. Later, I think, I'll finish this Later. I shut the door.
Guests arrive, the holiday ensues, the door to the room is opened, the mouse forgotten or perhaps reduced to the littlest niggley nub in the back of my mind. Then one night after watching a movie together, my friend Ladan says, Honey, something does not smell right in this room.
Oh shit. I bet I know what that is... I tell her the story. It is late, we've had a long day, we agree to face the dead mouse in the morning. The morning flies by with preparations to get Ladan to the train station in Portland. I take my sister out for an Indian food birthday-lunch, do some shopping, run some errands, and it is dark by the time I get home. I can definitely smell something "not right" in that room. I close the door.
The next morning, there is 6 inches of new snow. My friend, Gin, who I'd talked into coming over to hold my hand while I deal with the dead mouse, is snowed in. Aren't you a supposed to be a farm-girl? she laughs. Okay. I pull up my big girl panties, slip a plastic bag over my hand and a kerchief over my nose. I'm going in.
This is when it hits me: How I've avoided this encounter with death, how I put it off, how armed-to-the-teeth I am now with protection against it. I nearly laugh out loud: Here I am, I think, Ms. Non-Aversion-to Death.
But I would still rather not move that couch--- what do I fear? Do I imagine something from a horror film, something gruesome, imploded flesh writhing with maggots? I don't know. I do know I must act now or I will lose momentum. I move the table, the throw pillows, finally the couch itself. There on the carpet is the tiniest, sweetest, most harmless little dead mouse in the world.
Here he is, just a little creature who's time has come and gone, just a helpless little dead body. My heart breaks open for him. We are the same. He is just a living thing that is now dead, as we all will be someday. There is nothing wrong here, nothing foreign, nothing bad. I hesitate, then scoop up his tiny body in my plastic-gloved hand. It gives me pause-- it is still soft, not warm, but not stiff.
I ponder the wall I erected -- totally unconsciously-- to separate myself from this tiny creature's death. I know this wall, this line we draw between ourselves and others. I know it because I have frequently been on the other side of that line in recent months. I call it The Hedge.
It's the tiny little line that gets drawn because I am the one with cancer. The tiny, unconscious separation: You are the patient, the sick one, the one needing care. On the other side of the line, life goes on somewhat as usual. In its most virulent form this is what allows people to respond to someone diagnosed with lung cancer with, Well, he smoked you know.
Meaning what, exactly? Not all smokers get cancer and certainly not all those who have lung cancer smoked. It's The Hedge, the way we tell ourselves that our lives are under our control, that we won't get cancer because we don't smoke, or we don't eat junk, or we exercise, we"take care of ourselves," etc, etc, etc. This illusion that we will not have to face death because we are alive and well and death and illness-- well, they are on the other side of this line.
I think this is what Ram Dass (and maybe others) refer to as the I and Thou problem: Our propensity to separate ourselves, to believe in our separation, to ignore all evidence to the contrary. We are all in this together. We share the same fate. Each of us will die, just like this mouse did. In this, he is our brother.
Seeing my own Hedge gave me instant insight. I try to not take other people's Hedges personally. I do know it is about their own fear of illness and death. It's not about me, it's about what gets triggered in them. But I think I held some notion that my proximity to death, my willingness to look at it, my desire to not deny it, made me somehow special.
One tiny little dead mouse shot my specialness all to hell. I saw that aversion to death, the drawing of the line, the desire to separate from it is instinctual. Maybe it is a knee-jerk reaction of the ego, maybe it is a line that with time and attention we can no longer need to draw. This is why the Buddhists used to meditate in charnel yards, right? To face death. It is not something you do once. It is a practice you do everyday. Because the Buddhist teachings say that if you can learn how to die, you will learn how to live.
So. I honor you, little dead mouse, for your teaching. For showing me my self, for reminding me what is important. Thank you. Now, go be born a Buddha.
I went into the kitchen thinking to find something to scoop him up with-- But what? And then what? Put him outside with a stern talking-to? I didn't know. I grabbed an old yogurt container from an overflowing shelf of same. (Yup, time for my friend Janet to visit and inquire oh-so-gently, Do you really want to keep all of these? But I digress...)
Armed with container, I march back to the TV room where I see the mouse in question. He is moving now, but certainly not scurrying. Can a mouse lumber? Perhaps my dog had been "playing" with the poor thing before I found him? Or-- gulp -- perhaps it is hugely pregnant? Because there is definitely something not right about this mouse. Lumber, pause. Lumber, pause. I watch, hesitant to scoop. Truthfully, I am scared of this little creature and of whatever will happen between us post-scooping.
Now he is under the coffee table, then, in a relative burst of near-scurrying, I see his tail disappear under the couch. Great. Now what? Well, I don't have time to chase this mouse, I gotta go. Later, I think, I'll finish this Later. I shut the door.
Guests arrive, the holiday ensues, the door to the room is opened, the mouse forgotten or perhaps reduced to the littlest niggley nub in the back of my mind. Then one night after watching a movie together, my friend Ladan says, Honey, something does not smell right in this room.
Oh shit. I bet I know what that is... I tell her the story. It is late, we've had a long day, we agree to face the dead mouse in the morning. The morning flies by with preparations to get Ladan to the train station in Portland. I take my sister out for an Indian food birthday-lunch, do some shopping, run some errands, and it is dark by the time I get home. I can definitely smell something "not right" in that room. I close the door.
The next morning, there is 6 inches of new snow. My friend, Gin, who I'd talked into coming over to hold my hand while I deal with the dead mouse, is snowed in. Aren't you a supposed to be a farm-girl? she laughs. Okay. I pull up my big girl panties, slip a plastic bag over my hand and a kerchief over my nose. I'm going in.
This is when it hits me: How I've avoided this encounter with death, how I put it off, how armed-to-the-teeth I am now with protection against it. I nearly laugh out loud: Here I am, I think, Ms. Non-Aversion-to Death.
But I would still rather not move that couch--- what do I fear? Do I imagine something from a horror film, something gruesome, imploded flesh writhing with maggots? I don't know. I do know I must act now or I will lose momentum. I move the table, the throw pillows, finally the couch itself. There on the carpet is the tiniest, sweetest, most harmless little dead mouse in the world.
Here he is, just a little creature who's time has come and gone, just a helpless little dead body. My heart breaks open for him. We are the same. He is just a living thing that is now dead, as we all will be someday. There is nothing wrong here, nothing foreign, nothing bad. I hesitate, then scoop up his tiny body in my plastic-gloved hand. It gives me pause-- it is still soft, not warm, but not stiff.
I ponder the wall I erected -- totally unconsciously-- to separate myself from this tiny creature's death. I know this wall, this line we draw between ourselves and others. I know it because I have frequently been on the other side of that line in recent months. I call it The Hedge.
It's the tiny little line that gets drawn because I am the one with cancer. The tiny, unconscious separation: You are the patient, the sick one, the one needing care. On the other side of the line, life goes on somewhat as usual. In its most virulent form this is what allows people to respond to someone diagnosed with lung cancer with, Well, he smoked you know.
Meaning what, exactly? Not all smokers get cancer and certainly not all those who have lung cancer smoked. It's The Hedge, the way we tell ourselves that our lives are under our control, that we won't get cancer because we don't smoke, or we don't eat junk, or we exercise, we"take care of ourselves," etc, etc, etc. This illusion that we will not have to face death because we are alive and well and death and illness-- well, they are on the other side of this line.
I think this is what Ram Dass (and maybe others) refer to as the I and Thou problem: Our propensity to separate ourselves, to believe in our separation, to ignore all evidence to the contrary. We are all in this together. We share the same fate. Each of us will die, just like this mouse did. In this, he is our brother.
Seeing my own Hedge gave me instant insight. I try to not take other people's Hedges personally. I do know it is about their own fear of illness and death. It's not about me, it's about what gets triggered in them. But I think I held some notion that my proximity to death, my willingness to look at it, my desire to not deny it, made me somehow special.
One tiny little dead mouse shot my specialness all to hell. I saw that aversion to death, the drawing of the line, the desire to separate from it is instinctual. Maybe it is a knee-jerk reaction of the ego, maybe it is a line that with time and attention we can no longer need to draw. This is why the Buddhists used to meditate in charnel yards, right? To face death. It is not something you do once. It is a practice you do everyday. Because the Buddhist teachings say that if you can learn how to die, you will learn how to live.
So. I honor you, little dead mouse, for your teaching. For showing me my self, for reminding me what is important. Thank you. Now, go be born a Buddha.
Thursday, December 2, 2010
"I Have a Disease-Threatening Life"
OMG! (Do Buddhists say that?) I think I am in love. I just found this quote from Rick Fields:
Here is a link to his NYT obit, just in case you are as curious and as ignorant as I am. (Oddly enough, I am familiar with two of his books, "How the Swans Came to the Lake," and "Chop Wood, Carry Water.") Here's a link to his 1998 interview about death and dying in The Utne Reader.
''I don't have a life-threatening disease. My life is threatening my disease, in that it is keeping the disease from taking over. I have a disease-threatening life.''From his 1997 interview with Helen Tworkov in Tricycle, the Buddhist magazine they both helped to found in 1991. He was diagnosed with lung cancer in '94 and died in 99.
Here is a link to his NYT obit, just in case you are as curious and as ignorant as I am. (Oddly enough, I am familiar with two of his books, "How the Swans Came to the Lake," and "Chop Wood, Carry Water.") Here's a link to his 1998 interview about death and dying in The Utne Reader.
Monday, November 29, 2010
Got Guiltlessness?
"... even though you make a lot of mistakes and you mess up in all kinds of ways, all of that is impermanent and shifting and changing and temporary. But fundamentally, your mind and heart are not guilty. They are innocent."Pema Chodron did an interview with Dzigar Kongtrul Rinpoche in 2004. She asked him as a senior Tibetan dharma teacher who has been living in the west for some time, what he thought was the most important piece of advice he could give to western dharma practitioners. He said they need to understand guiltlessness.
She said, "Guiltlessness?"
And you see his reply above. Pema goes on to write: "So guiltlessness is very important in the subject of dissolving or burning up the seeds of aggression in our own hearts and our own minds. Most of the striking out at other people, for us in this culture, comes from feeling bad about ourselves. It makes us so wretched and so uncomfortable that it sets off the chain reaction of trying to get away from that feeling."
I found this on Pema Chodron's Facebook page, in a post from 2009 entitled Vast Blue Sky. It is an excerpt from her dharma talk, Practicing Peace in Times of War, published by Shambhala Press. For more of Pema's interview with Dzigar Kongtrul Rinpoche, click this link: http://www.tricycle.com/dharma-talk/realizing-guiltlessness?page=0,0
And let me leave you with this further quote-- Pema quoting Rick Fields, a poet and buddhist teacher whom I just discovered was also a fellow traveller on this path with cancer. (Evidently before he died in '99 he put out a limited edition called Fuck You Cancer and Other Poems, which I would love to get my hands on.) Anyway here is the quote:
Behind the hardness there is fear
And if you touch the heart of the fear
You find sadness (it sort of gets more and more tender)
And if you touch the sadness
You find the vast blue sky
And let me leave you with this further quote-- Pema quoting Rick Fields, a poet and buddhist teacher whom I just discovered was also a fellow traveller on this path with cancer. (Evidently before he died in '99 he put out a limited edition called Fuck You Cancer and Other Poems, which I would love to get my hands on.) Anyway here is the quote:
Behind the hardness there is fear
And if you touch the heart of the fear
You find sadness (it sort of gets more and more tender)
And if you touch the sadness
You find the vast blue sky
Sunday, November 28, 2010
Hello, Out There
Okay, yes, it has been a while. I have been feeling better and doing more which can lead to less contemplation and thus less writing for the likes of me. So in that respect, no news has been good news.
I have also been in a bit of a tussle with a couple of issues vis-a-vis this whole blog thing: First, what is appropriate to share here with you all and what I might more fruitfully or skillfully keep to myself? As you who know and love me recognize, my instinct is to kinda lay it all out there, but if I what I really want is to be of service to both myself and others, discretion may indeed be the better part of valor (as my both my mom and, more famously, Shakespeare said). And discretion is, uh, not my strong suit, shall we say? So I gotta chew on that a bit. I don't want to blurt, I want to communicate.
There are other, more craft-related questions: If this is a blog exploring my personal journey with cancer and spirit, do I tell you about my family at the beach? Do I address that only in terms related to the afore -mentioned topics? Do you really wanna see pictures of my beloved dog? That kind of thing...
And what about other people's privacy? I am increasingly aware that while this can be a very lonely path, I am not alone. My words and actions effect other people, and not always in the way I intend.
Add to this stew the fact that my mortality, after being dangled so brazenly my face appears to be suddenly -- woosh!-- back on the shelf of inevitable, yes, but imminent? Maybe, maybe not.
There has been no new normal for the last 5 months (or truthfully maybe year and a half?) of my life. So when the roller coaster seems to have come to a resting point, it is understandable that I have trouble releasing my grip on the idea that my world will again fall away from underneath me any second now. Maybe especially because that very lesson --impermanence, baby!-- has proven so precious to me.
Now it looks like I may have to deal with the fact that I might just have a new normal, at least for a while. Maybe even for long enough to once again be in the position of contemplating how to get a paying gig... Gosh, and I thought contemplating death was scary!
Who was it that said, "Dying is easy. Comedy is hard"? Being an artist in a down economy during late capitalism, now, that's hard. (Not to mention it being a tragedy as well as a comedy...)
So. That's where I am. I am thankful for all of you who care enough to check in here on me. And wish you all the best as the snowy season descends upon us. I'll be in touch, soon. Promise.
There has been no new normal for the last 5 months (or truthfully maybe year and a half?) of my life. So when the roller coaster seems to have come to a resting point, it is understandable that I have trouble releasing my grip on the idea that my world will again fall away from underneath me any second now. Maybe especially because that very lesson --impermanence, baby!-- has proven so precious to me.
Now it looks like I may have to deal with the fact that I might just have a new normal, at least for a while. Maybe even for long enough to once again be in the position of contemplating how to get a paying gig... Gosh, and I thought contemplating death was scary!
Who was it that said, "Dying is easy. Comedy is hard"? Being an artist in a down economy during late capitalism, now, that's hard. (Not to mention it being a tragedy as well as a comedy...)
So. That's where I am. I am thankful for all of you who care enough to check in here on me. And wish you all the best as the snowy season descends upon us. I'll be in touch, soon. Promise.
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