Last night, as I was sleeping,
I dreamt -- marvelous error! -
that I had a beehive
here inside my heart.
And the golden bees
were making white combs
and sweet honey
from my old failures.
Antonio Machado
Monday, December 26, 2011
Saturday, December 17, 2011
Holidaze Reminder
“Of one thing I am certain, the body is not the measure of healing – peace is the measure.” ~ George Melton
I love this quote. It rings true, and I'd never seen it before. So, I read the rest of the article and I liked it, too! Here is an excerpt from Traditions of Healing Rituals, Wendy Stargr, elephantjournal.com:
I love this quote. It rings true, and I'd never seen it before. So, I read the rest of the article and I liked it, too! Here is an excerpt from Traditions of Healing Rituals, Wendy Stargr, elephantjournal.com:
"Training one’s mind in gratitude is perhaps one’s most worthy pursuit and guaranteed to heal one’s holiday emptiness. In fact, there is no other single human emotional quality that has the power to completely reinvent how you perceive your life and open a door to contentment and abundance. Many of the oldest secret societies in the world have gratitude built into their foundational belief systems. It takes practice if you are not accustomed, but gratitude is how happiness feels when it is imbued with wonder.
The most meaningful gifts at this time of year can’t be bought or even given; they are the transformation that happens in us when we are open to receiving. As a chronic giver, this ability to receive is a fledgling chick just learning to fly in me, but I now understand that letting go of how I think things should be and listening deeply to what is right in front of me is almost always a gift that I would have entirely missed in the past. When we get stuck on how life’s offerings (and you can expand that to include people and stuff) don’t match our expectations, we literally turn away from the love and pleasure that is ours. I see it happen every day; we refuse to be loved when it doesn’t look the way we want it to. Celebrate life this holiday season by allowing and receiving life’s gifts in front of you. Practice releasing your thoughts and preconceived ideas when you open a gift and listen for what might be deeply hidden in the gift in front of you.
All of this healing might make you bold enough to attempt the deepest giving of all- Forgiving. This is when we accept that we won’t get a better past and when we finally understand that the only one being harmed by the grudges we hold are ourselves. Forgiveness, in many ways, is the ultimate act of receiving. You finally free yourself from carrying around the baggage of emptiness filled with justifiable injury and disrespect that might never get proper acknowledgement. Forgiveness is a chance to see beyond what we have always known and create room to get a glimpse of a universe still unknown to us. In these moments, we can drop the stories that have defined our holiday memories for so long."
Tuesday, December 13, 2011
Of Platelets and Glad Tidings
I do NOT have to go in for another blood draw today! Yay!
Did I mention they took a second draw last week while I still had the infusion line in? Well, they did. It was the end of a long day and I left before the results came back. Then Dr L and I played phone tag: He left a message that he wanted to talk to me about my second blood draw, and that it was not an emergency. In return, I left him a message giving him permission to leave a more thorough message on my voicemail. That did not happen.
I called this morning, and he got back to me. The second platelet count was much improved-- not perfect but closer to the low-normal range where I have been hanging out for sometime. (Turns out platelets can do a little trick called "clumping" where they hide out in clusters, which makes the count look lower then it is.)
Initially, he advocated for going ahead with another blood draw today, just to see where things stand. I told him that I was not sure if he knew that I tend to be an extremely difficult poke, that my arm was black and blue from last week's attempt, and that while I would certainly do it if he thought it was necessary, I would prefer to save myself and everyone else the trauma if it was not. He was glad I brought it up and said in that case, we could let it go until my next visit to Celilo, the first week of January.
To my mind, the best news is this: I am getting better at respectfully standing my ground and asking for what I want from my medical team without working myself into a snit because they do not remember or already know what I know about my body, my situation, and my preferences. I am able to be a more competent member of my own team, in a way-- to be more responsible about how I participate and less panic-y and judgmental about how others participate.
I suspect the flip-side of the coin of old-fashioned blind-trust in doctors is this: the desire that one could or should be able to have such trust. We invest them with such authority in part because we wish their expertise gave them the ability to give black and white answers to our urgent health questions. Yeah, that would be nice, but that just ain't the way things really work. That's not anybody's fault. That is just how things are.
When we don't like something, we look around for some one to blame. That's kinda how we humans are built. But we don't have to play out that scenario. And if we look more deeply, we might be able to see that every one of us has to deal with things-as-they-are and not things-as-we-wish-they-were.
Recognizing that feels kind of grown-up to me. As we grow up we have to give up some of the magical thinking that someone else has all the answers and can swoop in and save us. That can be hard to give up on--- especially when we are faced with large, complex, scary issues like life and death. But the more we can do that-- give up the us-v.-them attitude-- the more we can base our understanding on reality itself-- rather then on the reality we wish we had.
All this talk of reality is making my head spin. Think I'll take a break and put some lights on the Christmas tree. Best wishes, everyone.
Did I mention they took a second draw last week while I still had the infusion line in? Well, they did. It was the end of a long day and I left before the results came back. Then Dr L and I played phone tag: He left a message that he wanted to talk to me about my second blood draw, and that it was not an emergency. In return, I left him a message giving him permission to leave a more thorough message on my voicemail. That did not happen.
I called this morning, and he got back to me. The second platelet count was much improved-- not perfect but closer to the low-normal range where I have been hanging out for sometime. (Turns out platelets can do a little trick called "clumping" where they hide out in clusters, which makes the count look lower then it is.)
Initially, he advocated for going ahead with another blood draw today, just to see where things stand. I told him that I was not sure if he knew that I tend to be an extremely difficult poke, that my arm was black and blue from last week's attempt, and that while I would certainly do it if he thought it was necessary, I would prefer to save myself and everyone else the trauma if it was not. He was glad I brought it up and said in that case, we could let it go until my next visit to Celilo, the first week of January.
To my mind, the best news is this: I am getting better at respectfully standing my ground and asking for what I want from my medical team without working myself into a snit because they do not remember or already know what I know about my body, my situation, and my preferences. I am able to be a more competent member of my own team, in a way-- to be more responsible about how I participate and less panic-y and judgmental about how others participate.
I suspect the flip-side of the coin of old-fashioned blind-trust in doctors is this: the desire that one could or should be able to have such trust. We invest them with such authority in part because we wish their expertise gave them the ability to give black and white answers to our urgent health questions. Yeah, that would be nice, but that just ain't the way things really work. That's not anybody's fault. That is just how things are.
When we don't like something, we look around for some one to blame. That's kinda how we humans are built. But we don't have to play out that scenario. And if we look more deeply, we might be able to see that every one of us has to deal with things-as-they-are and not things-as-we-wish-they-were.
Recognizing that feels kind of grown-up to me. As we grow up we have to give up some of the magical thinking that someone else has all the answers and can swoop in and save us. That can be hard to give up on--- especially when we are faced with large, complex, scary issues like life and death. But the more we can do that-- give up the us-v.-them attitude-- the more we can base our understanding on reality itself-- rather then on the reality we wish we had.
All this talk of reality is making my head spin. Think I'll take a break and put some lights on the Christmas tree. Best wishes, everyone.
Tuesday, December 6, 2011
Another Day at the Ol' Cancer Center.
Today Lori came with me to hear what Dr L had to say about switching me from Arimidex to a new hormone drug... What is it they say about best laid plans?
Yesterday I noticed that my appointment card listed Dr L at 10:00 and then chemo. I don't have chemo. My infusion, Zometa, is not a chemotherapy drug. I figured it was just a mistake--but it is the kind of mistake that could really freak some people out!
Plus, I need to arrive about an hour before my Dr appointment so the nursing staff can insert my IV and draw blood for labs. If I show up at the time listed as my "Dr appointment" on the card, it can really mess up every one's schedule for the day. (I know, because it has happened.)
I point these things out the the receptionist when we arrive (a little after 9 am). She asks to keep the card to show to the director, saying they hope to find a better solution for these kind of mix-ups between the front desk and the treatment areas.
I go on into the infusion room, set up my ipod, earbuds and laptop and do my best to zone out while the poking ensues. It is a tough one this morning. I have not found any sure fire way to make it easier. Being hydrated helps, having a puff right before helps (but I don't want to do that if I plan on any medical discussions with the doc!), but nothing helps every time. One just does the best one can before during and after the ordeal. I can tell you it is not easy on anyone.
Lori joins me in the exam room and meets Dr L (aka Doogie Howser) who tells us that since I am tolerating the current med (Arimidex) so well, and it has had such impressive results on my liver lesions, he now thinks we should stay the course --at least until we get the next set of scans (in January-- they happen about every 3 months) before we look at switching to the new med (Aromasin).
Well, there's a surprise. But OK.
Back out to the infusion room. We must wait while they finish running my labs before they can give me the Zometa. A couple of staff people stop by to ask about my getting Reiki today. (I had stopped at the downstairs information desk on my way in and requested a Reiki practitioner come up to the infusion room to treat me whenever one arrived. I don't know if this new notoriety is because of that or from my phone calls to the Director and the Spiritual Care people after last month's Reiki fiasco.)
Lynn, the Director-- with whom I had a conversation last month about creating the possibility of quiet in the infusion room-- tells me they have ordered noise canceling head phones. A good start. Not one but TWO Reiki practitioners come by to work on me-- one before the infusion arrives, one after. The Reiki people thank me for raising a squawk. It seems it was helpful.
Nina comes by at the end to say hello and we talk again about the work we imagine being part of together, exploring pyscho-spiritual-social approaches to healing-- methods that focus not so much on "cure" per se, as on finding meaningfulness with whatever circumstances life throws our way, including illness and loss. The current model of battle for victory over disease can prevent us from being present to the life we have right now. I do not know that either Nina or myself are patient people by nature, but we are learning. Slow, patient, steady. It is a long slog, but it is good to have partners in this endeavor.
One step at a time, baby, one step at a time.
My blood work comes back showing my platelets are low. My white and red blood count is fine. Maybe this is some freaky occurrence? The Dr wants me to get another blood draw next week just to keep an eye on things. Maybe this is why I am especially bleed-y when they take out the IV today? Maybe it explains my tiredness the last couple of days? I do not know. I need to do a little more research on this low platelet phenomenon.
But I do know that after a bowl of Tom Kah soup and a whirl around K-Mart and Home Depot (Need new curtain rod!) Lori and I both arrive back in Hood River, about seven and a half hours after we left, totally pooped. One step at a time, people.
My (mostly) remodeled house is (mostly) painted (interiors, anyway)-- but there is plenty left to clean/recycle/toss/re-arrange /etc before my holiday company arrives, and I am just going to have to pace myself. Do not hurry, do not tarry. Tomorrow is another day.
Yesterday I noticed that my appointment card listed Dr L at 10:00 and then chemo. I don't have chemo. My infusion, Zometa, is not a chemotherapy drug. I figured it was just a mistake--but it is the kind of mistake that could really freak some people out!
Plus, I need to arrive about an hour before my Dr appointment so the nursing staff can insert my IV and draw blood for labs. If I show up at the time listed as my "Dr appointment" on the card, it can really mess up every one's schedule for the day. (I know, because it has happened.)
I point these things out the the receptionist when we arrive (a little after 9 am). She asks to keep the card to show to the director, saying they hope to find a better solution for these kind of mix-ups between the front desk and the treatment areas.
I go on into the infusion room, set up my ipod, earbuds and laptop and do my best to zone out while the poking ensues. It is a tough one this morning. I have not found any sure fire way to make it easier. Being hydrated helps, having a puff right before helps (but I don't want to do that if I plan on any medical discussions with the doc!), but nothing helps every time. One just does the best one can before during and after the ordeal. I can tell you it is not easy on anyone.
Lori joins me in the exam room and meets Dr L (aka Doogie Howser) who tells us that since I am tolerating the current med (Arimidex) so well, and it has had such impressive results on my liver lesions, he now thinks we should stay the course --at least until we get the next set of scans (in January-- they happen about every 3 months) before we look at switching to the new med (Aromasin).
Well, there's a surprise. But OK.
Back out to the infusion room. We must wait while they finish running my labs before they can give me the Zometa. A couple of staff people stop by to ask about my getting Reiki today. (I had stopped at the downstairs information desk on my way in and requested a Reiki practitioner come up to the infusion room to treat me whenever one arrived. I don't know if this new notoriety is because of that or from my phone calls to the Director and the Spiritual Care people after last month's Reiki fiasco.)
Lynn, the Director-- with whom I had a conversation last month about creating the possibility of quiet in the infusion room-- tells me they have ordered noise canceling head phones. A good start. Not one but TWO Reiki practitioners come by to work on me-- one before the infusion arrives, one after. The Reiki people thank me for raising a squawk. It seems it was helpful.
Nina comes by at the end to say hello and we talk again about the work we imagine being part of together, exploring pyscho-spiritual-social approaches to healing-- methods that focus not so much on "cure" per se, as on finding meaningfulness with whatever circumstances life throws our way, including illness and loss. The current model of battle for victory over disease can prevent us from being present to the life we have right now. I do not know that either Nina or myself are patient people by nature, but we are learning. Slow, patient, steady. It is a long slog, but it is good to have partners in this endeavor.
One step at a time, baby, one step at a time.
My blood work comes back showing my platelets are low. My white and red blood count is fine. Maybe this is some freaky occurrence? The Dr wants me to get another blood draw next week just to keep an eye on things. Maybe this is why I am especially bleed-y when they take out the IV today? Maybe it explains my tiredness the last couple of days? I do not know. I need to do a little more research on this low platelet phenomenon.
But I do know that after a bowl of Tom Kah soup and a whirl around K-Mart and Home Depot (Need new curtain rod!) Lori and I both arrive back in Hood River, about seven and a half hours after we left, totally pooped. One step at a time, people.
My (mostly) remodeled house is (mostly) painted (interiors, anyway)-- but there is plenty left to clean/recycle/toss/re-arrange /etc before my holiday company arrives, and I am just going to have to pace myself. Do not hurry, do not tarry. Tomorrow is another day.
Friday, November 11, 2011
I Am a Lot of Things
And by that I mean that I am experiencing a lot of emotions right now. And that I am aware that, like Whitman, "I contradict myself, I am large, I contain multitudes."What brings this on?
Well, I went to Celilo this week for my monthly check in. Having discussed the (very good) results of my CT scan during last month's visit, I figured this one was mostly a matter of getting the IV needle into a vein (not always easy) and then enduring an hour in the noisy infusion room because I forgot to bring my ear buds.
Wrong!
Turns out the CT scan results I discussed with Nina last month were preliminary-- the full report came in to the new oncologist (Doogie Houser or Dr L) after my visit. Oh. And the full results? Not so good. Did Dr L speak with you? Ah, no. He needs to speak to you. Oh. Okay. Nina gets the young Dr and they both stay for our discussion.
There appears to be some new bone metastasis in my sternum. Oh. And even though everything else looks pretty good (liver mets continue to shrink, etc) these new mets make Dr L think we should change hormone therapy. To something called Aromasin.
As the name implies, it is another aromatase inhibitor-- same "family" of meds as Arimedex. It has a "steroidal element" that changes the pathway it takes to get into the cell. Which Dr L hopes might make it more effective against the bone mets. Other then that, it would likely have similar side effects as what I am already dealing with on Arimedex.
There is no hurry to switch, they know I like to research and think on these things. At my request, the three of us to go into Dr L's office to see the actual pictures of the latest scan. Dr L wants to make sure I understand that he is NOT a radiologist-- his ability to point out to me just exactly what we are looking at is limited. I ask if it is possible for me to look at the images with someone who is skilled at interpreting them. Yes, of course, he'll call the HR hospital and arranged a meeting with a radiologist for me.
And he did! That was Tuesday and I sat down with Dr. Terry Finstad in HR today.
Quothe the radiologist, "I don't know why more people don't ask to do this..."
Me, "I don't think most people even know they can ask."
But as you well know, gentle readers, I like information, and as a hippy-dippy mind-body-spirit person, I like to give myself visual images to work with-- plus I ain't afraid to make what some doctors might consider to be "unusual" requests.
What do the pictures reveal? As often in medicine, things are not as black and white (in this case, literally) as they might at first appear. Yes, there are clearly little white glowing spots (indicating growing bone-- that's the form of bone mets I have)-- but if we go back to the images from three months earlier, hmmm, it does look like there might be evidence of these same little spots-- not as glowing, not as clear, not as white-- even back then. So are these NEW mets? I ask. Hard to be certain. They are clearly more developed mets. But they are still relatively small-- I could fit two of them on the fingernail of my pinkie.
We can clearly see some increase in the size of the bone mets inside my L1 and T8 vertebrae. We discuss how these are well within the shape of the vertebrae itself-- not threatening to protrude into my spinal column, and cause other problems. And since this mets does not eat bone away, the danger of fracture due to metastasis is low. Perhaps the clearest difference we see between scans is the evidence of the diminishing lesions on my liver. That is good news.
So do I change meds? Good question. The radiologist isn't sure what he would do himself. Regardless of whether these mets on my sternum are brand new (which seemed to be the deal-breaker for Dr L) it looks like Arimedex is currently failing to totally inhibit my bone mets (what is less certain is that it ever did), but it has been effective against the liver mets... So, do I change meds? I don't know.
I don't wanna. But I think that is largely because I don't wanna entertain the idea that the current medicine is no longer stopping the cancer in its track. I want it to work. Period. I wanted to be one of those people who spend ten or twenty years on a single hormone drug before they have to change up-- or before they die in their sleep from old age... Let's face it, I don't wanna have cancer. Butcha do, Blanche, ya do!
Amazing how quickly we put that kind of thing behind us if and when we can, and how shocked we are when it pokes up to the surface again. OH, right. I still have stage four cancer. This rug can get pulled out from under me at any time. True for all of us, yes, but, um, one would think it is a little less easily denied for someone like me. And one would be WRONG!
I am shocked. Really shocked. I am shocked to feel like death has landed on my doorstep all over again. (As if I should be immune, like I gave at the office or something.) And I am gob-smacked to realize how shocked I am. Kinda a double whammy.
I can barely put one foot in front of the other. Or maybe it is more accurate to say I can ONLY put one foot in front of the other. Before sending me back out to the infusion lounge, Nina reminds me that this "change" in some ways doesn't mean much of anything-- I still feel well, that is what is important, that is the actual reality--- and I am still doing remarkably well. Under my circumstances. Yes. Okay. Thanks. I will think about all this and get back to you. One foot in front of the other.
Okay. But I am still dying.
Okay. Yes. Everything that lives will die and I am not immune to that. Like Beckett said, "You are on earth. There is no cure for that." One foot in front of the other.
The rest of the day goes by. I am sure I will tell you more about my time in the infusion chair, about stuffing my ears with Kleenex and wrapping my head in my scarf to try to drown out all the noise while I get a Reiki treatment from the gifted practitioner I had to rustle up out of hiding in the basement (!). Oh, yes, you will hear more on that, rest assured.
Driving home I am newly touched again by how beautiful this world is, how lucky we are to live in it-- however briefly. How could I forget that? How could my view become so limited so quickly? Does it really take such a graphic, in-my-face reminder of impermanence to get me to let go of the small stuff and be grateful for the much bigger world I live in? Maybe so. Maybe that is part of our human-selves, our smaller selves, part of what Sobonfu would call our "meat suit," which can so limit our vision of reality.
The Yoga Sutras talk of mistaking unreality for reality and the impermanent for the permanent. Yeah, we do that. I do that.
I spent the next day reading in my bed, hanging with my dog, nursing my newly rediscovered mortality. Ouch. It is a tender spot. I have not felt ready to talk about it. I have been chewing and stewing and just being with it on my own. I am sorry if I have offended anyone by breaking this news in blog form, but I am still feeling kinda quiet about it. But I do not feel robbed. I feel reminded of how much abundance is all around me.
I have some decisions to make about my medications. I will do some more research and some more thinking. It is not an emergency. It is just the next step.
There will be a step after that. And a step after that.
Please do not worry about me, my friends. I am still here. And I still have some shit I wanna do... And I guess, if that is the case I got some doing to do.
Wednesday, November 2, 2011
Squirrely
Yup. That is how I feel these days. Downright squirrely.
And by that I mean? Jumpy and distract-able, like I don't want to be here, exactly, but I do not know where I do want to be, or how I would get there from here, so I would rather just take this day and obliterate it. (My favorite forms of obliviating being reading, napping, watching HULU... anything but engaging in my life.)
I know that the answer to this predicament is start anywhere, but that is so just what I don't want to do! I know am spinning in the hamster wheel of my own GD mind. But knowing all that does not, unfortunately, free me from it. And I've learned that I can't just push my way through-- that only ends in stuck-ness + self-hatred. So. I decided I would out myself by writing about this most uncomfortable spot.
Urgh! The thought of it makes me feel sick. But here goes:
Let's start with the word choices I made above: Obliterate and obliviate. Pretty powerful and destructive sounding. What do they mean, exactly?
It turns out that there is a good reason spellcheck objects to my use of obliviate: It is a new word --coined by the Harry Potter books!-- meaning (just about) what you think it does: a spell that makes one forget. Its origins reach back to the ancient (13th c) word, oblivion, meaning:
All righty, then. Any questions?
At this juncture in our narrative, we have landed in a very old and dark place in my psyche (and, thank you, yoga, buddha, jesus and all other powers for good that be, at least I am now aware that I am not alone in this place) where my deepest desire is to disappear, which carries with it overtones of both being utterly destroyed and being forgiven. The question is not why this desire is planted in me. We can ask, but really, any answer we might find is beside the point. And the point is? Live Through This. Do not be dead to this. Even this darkness is a part of being alive. Lean into it. Learn to not reject my own rejection.
Such a hat trick.
It ain't easy. And whenever I've done it before it is only after exhausting all other options. Because it is painful, so painful, to feel one's own rejection of life, a gift one feels unworthy of receiving. Is this the seed common to depression, distraction, addiction, self-loathing-- and to all the many ways those play out in the lives of human beings?
I don't know.
What I know is this:
This is all happening in the hamster cage of my mind. And I do not have to believe everything I think. If I can change my mind-- Poof! -- the whole world changes.
And #2: I have been thinking of a poem by Tess Gallagher ever since I started writing this post. It is called If Poetry Were Not a Morality. It is always tricky to quote part of a poem and ask it to stand in for the whole, and I suspect it is actually a sin to try to explain the missing part--- so, I urge you to click on the link and read the whole thing yourself, if you are interested. You will not be sorry.
But I will leave you with #3: This showed up in my inbox thanks to Rob Brezsny's Free Will Astrology Newsletter. He credits Jennifer Welwood.
And by that I mean? Jumpy and distract-able, like I don't want to be here, exactly, but I do not know where I do want to be, or how I would get there from here, so I would rather just take this day and obliterate it. (My favorite forms of obliviating being reading, napping, watching HULU... anything but engaging in my life.)
I know that the answer to this predicament is start anywhere, but that is so just what I don't want to do! I know am spinning in the hamster wheel of my own GD mind. But knowing all that does not, unfortunately, free me from it. And I've learned that I can't just push my way through-- that only ends in stuck-ness + self-hatred. So. I decided I would out myself by writing about this most uncomfortable spot.
Urgh! The thought of it makes me feel sick. But here goes:
Let's start with the word choices I made above: Obliterate and obliviate. Pretty powerful and destructive sounding. What do they mean, exactly?
It turns out that there is a good reason spellcheck objects to my use of obliviate: It is a new word --coined by the Harry Potter books!-- meaning (just about) what you think it does: a spell that makes one forget. Its origins reach back to the ancient (13th c) word, oblivion, meaning:
1. The state of being completely forgotten or unknown.And obliterate?
2. The state of forgetting or of being oblivious.
3. Official disregard or overlooking of offenses; pardon; amnesty.
1. Destroy utterly; wipe out.
2. Cause to become invisible or indistinct; blot out.
All righty, then. Any questions?
Turns out my word choice reveals my state of mind far more nakedly then is really comfortable. (Ah, yes, note to self: Please Remember-- that is why I write.) Uh, and why exactly am I even thinking about sharing this on the World Wide frikkin' Web? Oh, yeah, in case it may be of service to others... Okay. Here we go.
At this juncture in our narrative, we have landed in a very old and dark place in my psyche (and, thank you, yoga, buddha, jesus and all other powers for good that be, at least I am now aware that I am not alone in this place) where my deepest desire is to disappear, which carries with it overtones of both being utterly destroyed and being forgiven. The question is not why this desire is planted in me. We can ask, but really, any answer we might find is beside the point. And the point is? Live Through This. Do not be dead to this. Even this darkness is a part of being alive. Lean into it. Learn to not reject my own rejection.
Such a hat trick.
It ain't easy. And whenever I've done it before it is only after exhausting all other options. Because it is painful, so painful, to feel one's own rejection of life, a gift one feels unworthy of receiving. Is this the seed common to depression, distraction, addiction, self-loathing-- and to all the many ways those play out in the lives of human beings?
I don't know.
What I know is this:
This is all happening in the hamster cage of my mind. And I do not have to believe everything I think. If I can change my mind-- Poof! -- the whole world changes.
And #2: I have been thinking of a poem by Tess Gallagher ever since I started writing this post. It is called If Poetry Were Not a Morality. It is always tricky to quote part of a poem and ask it to stand in for the whole, and I suspect it is actually a sin to try to explain the missing part--- so, I urge you to click on the link and read the whole thing yourself, if you are interested. You will not be sorry.
But I will leave you with #3: This showed up in my inbox thanks to Rob Brezsny's Free Will Astrology Newsletter. He credits Jennifer Welwood.
Willing to experience aloneness,
I discover connection everywhere;
Turning to face my fear,
I meet the warrior who lives within me;
Opening to my loss and pain and ignorance,
I remember who I am and what I'm here for.
Surrendering into emptiness,
I find fullness without end.
Each condition I flee from pursues me,
Each condition I welcome transforms me
and becomes itself transformedBest wishes, my friends. Good luck evolving. And thank you.
into the blessing it always was.
Thursday, October 13, 2011
Still Here
Yes, my friends, I am still here. It has been a while. No news is not bad news. Things have been busy with my remodel and my end of summer crop of company. All is well. But I know I do better when I write. So here I am. What's new? I have quite a backlog of stories to share. Let's start in the nearly present...
Tuesday I went to Celilo for my monthly cancer check-in and Zometa infusion (to help deal with bone metastasis). I saw Nina Van Es, NP, who is my all time favorite and personal champion on staff there. Dr T has finally retired and the new doc I refer to as Doogie Howser, for not very original reasons. He is nice enough, young (33!), and I have sympathy for what it must be like to walk into a full clinic of people you've never met before, at all different stages of all different kinds of cancer, with all the different and unique physical, emotional, psychological needs that implies. That is a lot to dive in to. I wish him well.
But back to me!
The results from my routine CAT scan (I had one last week, I get them about 3 times a year) look pretty good. Lesions in liver continue to decrease. Metastasis in bones ( T2, T7, T11, left clavicle, right posterior rib) have not increased.
Am I in remission? I ask. Nina pondered. She said she'd have to get back to me with the precise medical definition of "remission"-- she seems to remember it has something to do with a 50% reduction in tumor mass, and of course she'd have to ask an Oncologist what they think... but she THINKS that we could say that. In any event I am doing REMARKABLY well.
Here's what Wikipedia says about Remission:
OK, my friends. That is it for now, but I promise I will be back. 'Cause while this IS good news, it is far from the best STORY I've tripped over in my path the last few months. Thanks for checking in and thanks for keeping the faith.
Tuesday I went to Celilo for my monthly cancer check-in and Zometa infusion (to help deal with bone metastasis). I saw Nina Van Es, NP, who is my all time favorite and personal champion on staff there. Dr T has finally retired and the new doc I refer to as Doogie Howser, for not very original reasons. He is nice enough, young (33!), and I have sympathy for what it must be like to walk into a full clinic of people you've never met before, at all different stages of all different kinds of cancer, with all the different and unique physical, emotional, psychological needs that implies. That is a lot to dive in to. I wish him well.
But back to me!
The results from my routine CAT scan (I had one last week, I get them about 3 times a year) look pretty good. Lesions in liver continue to decrease. Metastasis in bones ( T2, T7, T11, left clavicle, right posterior rib) have not increased.
Am I in remission? I ask. Nina pondered. She said she'd have to get back to me with the precise medical definition of "remission"-- she seems to remember it has something to do with a 50% reduction in tumor mass, and of course she'd have to ask an Oncologist what they think... but she THINKS that we could say that. In any event I am doing REMARKABLY well.
Here's what Wikipedia says about Remission:
My disease has not completely disappeared, but it is not currently active. Call that what you will, I call it good news.
Remission
Remission is the state of absence of disease activity in patients known to have a chronic illness that cannot be cured. It is commonly used to refer to absence of active cancer when the disease is expected to manifest again in the future. A partial remission may be defined for cancer as 50% or greater reduction in the measurable parameters of tumor growth as may be found on physical examination, radiologic study, or by biomarker levels from a blood or urine test. A complete remission is defined as complete disappearance of all such manifestations of disease.
OK, my friends. That is it for now, but I promise I will be back. 'Cause while this IS good news, it is far from the best STORY I've tripped over in my path the last few months. Thanks for checking in and thanks for keeping the faith.
Friday, August 12, 2011
Grandmother Tree
Having already outed myself and my spiritual beliefs with this public blog, I am now poised to jump off the "woo-woo" end: Follow me if you dare and at your own risk. I will not defend any of what I am about to say. I can only tell you the truth as I experience it.
Some of you may know that I have a special tree near Cloud Cap, the 100-year old cabin at the timberline of Mt Hood that my family has been going to since I was born. It is an old pine tree just far enough away that it can function as a kind of retreat when the lodge gets crowded, but close enough that I can keep an eye on the place and can walk there easily regardless of my state of health.
I sat in meditation under that tree every day during my three-week sabbatical on the mountain with Handmaidens Amy Zenger and Patty Flynn after my first encounter with breast cancer in 1997. And I have sat under that tree every visit to Cloud Cap since then. We grew to have a relationship, that tree and I, unlike any I have ever experienced with a being outside of not just my species but of the animal kingdom altogether. I came to call her Grandmother Tree, (although I do not think I ever shared that name with anybody) and she was a generous and wise teacher.
Was, my friends, because she is gone now. The Gnarl Ridge fire that re-ignited in September three years ago, surprising humans and devastating so much of the forest near Cloud Cap and Tilly Jane (but miraculous spared buildings in both locations) took her life. Her snag is still there. It is beautiful. I sat beneath it. I reached out to her and she is gone. There is a beautiful absence where she once was. And in that silence I could hear even subtler voices-- the scorched rocks around me, the earth itself was whispering. Life comes and life goes.
Grandmother Tree had been dying since I met her. She told me so herself. She was probably the oldest being I'd ever encountered-- certainly the oldest I held regular conversations with-- but she was a whippersnapper compared to the rocks surrounding her. Life comes and life goes. And that is not a problem. Even the rocks came into being once and will cease to be some time, changed utterly into pumice or sand or soil. All of our individual lives have come into being by means we acknowledge as miraculous-- whether we acknowledge the spiritual aspect of that word or not; clearly, we arose by means outside of our human control. And we will cease to be (in spite of medical science or hubris) just as miraculously. It is how things work on this planet. Things arise, things are, things fall away.
And is there something that remains? Grandmother Tree would say yes. But she was not here to tell me that herself. She is "changed, changed utterly." But she left that message for me. Her very absence had a message for me. We come and go, and our lives matter. What we do with our lives matters. She is gone-- as my mother is gone and my father is gone-- but my relationship with them remains. Love remains. Her death may be the final teaching she left for me. I lean into the spaciousness she filled. I lean into to the vast, slow, near-silent voices of the rocks, the ever-young chorus of wildflowers springing up in abundance where they were once daunted by the shade of old-growth forest. Everything passes, love remains. Things co-arise, conditioned by one another. Everything passes. Love remains.
Thank you, Grandmother. May all beings be blessed with such teachers, know happiness, be free of suffering, remain connected to joy, and dwell in equanimity.
Some of you may know that I have a special tree near Cloud Cap, the 100-year old cabin at the timberline of Mt Hood that my family has been going to since I was born. It is an old pine tree just far enough away that it can function as a kind of retreat when the lodge gets crowded, but close enough that I can keep an eye on the place and can walk there easily regardless of my state of health.
I sat in meditation under that tree every day during my three-week sabbatical on the mountain with Handmaidens Amy Zenger and Patty Flynn after my first encounter with breast cancer in 1997. And I have sat under that tree every visit to Cloud Cap since then. We grew to have a relationship, that tree and I, unlike any I have ever experienced with a being outside of not just my species but of the animal kingdom altogether. I came to call her Grandmother Tree, (although I do not think I ever shared that name with anybody) and she was a generous and wise teacher.
 |
| She's the dark one in the center, behind the rock. |
Grandmother Tree had been dying since I met her. She told me so herself. She was probably the oldest being I'd ever encountered-- certainly the oldest I held regular conversations with-- but she was a whippersnapper compared to the rocks surrounding her. Life comes and life goes. And that is not a problem. Even the rocks came into being once and will cease to be some time, changed utterly into pumice or sand or soil. All of our individual lives have come into being by means we acknowledge as miraculous-- whether we acknowledge the spiritual aspect of that word or not; clearly, we arose by means outside of our human control. And we will cease to be (in spite of medical science or hubris) just as miraculously. It is how things work on this planet. Things arise, things are, things fall away.
And is there something that remains? Grandmother Tree would say yes. But she was not here to tell me that herself. She is "changed, changed utterly." But she left that message for me. Her very absence had a message for me. We come and go, and our lives matter. What we do with our lives matters. She is gone-- as my mother is gone and my father is gone-- but my relationship with them remains. Love remains. Her death may be the final teaching she left for me. I lean into the spaciousness she filled. I lean into to the vast, slow, near-silent voices of the rocks, the ever-young chorus of wildflowers springing up in abundance where they were once daunted by the shade of old-growth forest. Everything passes, love remains. Things co-arise, conditioned by one another. Everything passes. Love remains.
Thank you, Grandmother. May all beings be blessed with such teachers, know happiness, be free of suffering, remain connected to joy, and dwell in equanimity.
Thursday, July 28, 2011
Let Go (Or Be Dragged)
In the practice of meditation, once we step out of our concern for security and are willing to be raw and rugged, personal, as we are, somehow a certain relaxation takes place. We discover that the more we let go, the more comes back to us, rather than that we lose our grip on anything. Thus a real relationship to our situation begins to develop.
You know I love me some Chogyam Trungpa.
I am letting go of a lot these days. My house is under-going renovations. So, the actual, physical, 3-D situation around me is in the midst of transformation. And yes, it can be a bit, uh, disconcerting. The environment is raw and rugged for sure. And relaxing into that can be challenging. For the most part, it remains exhilarating for me. But at the end of the day I lay down exhausted-- in part from juggling all the little projects and decisions that arise to interrupt one another all day long (multi-tasking was never my strong suit), and in part, I am convinced, by just living with the energy inherent in a torn up, transforming situation. For someone who really loves her comfy, cosy cocoon space, this is probably a good new taste to cultivate.
After all, the truth is, we are always in the midst of change.
Love to you in the midst of yours.
Tuesday, July 12, 2011
God Light
I am in the middle of renovations. This old house needed a new roof. So I have been living inside the head of a giant who is under going extensive dental work for about a week now.
I am also removing a couple of walls and adding some sliding barn-like doors to open one space and define another as my studio. Oh, AND I am getting a bathtub after living without one for 10 years now. Bathing is more than a hobby to me. I take lounging in hot water seriously. I am getting a 5 1/2 ft cast iron claw foot (please say a novena for the guys hauling it up my narrow farm-house stairs) and I am totally stoked about it.
It is remarkable to experience change happening after imagining and wanting it for so long. It is noisy and dusty and inconvenient, sure, but kinda wonderful at the same time. Transformation is powerful. There is something literally awesome about it.
Yesterday a solar tube was installed over the spot where my claw foot tub will go. I was out of the house for dinner at some friends when the guys finished for the day, and it was dark when I got home. Brushing my teeth, I noticed the round face of the solar tube installed in my sloping ceiling, thought, oh, cool, and trundled off to bed.
This morning I toddle into the hallway half asleep and head for the john, when it hits me like a major chord: The Light of God.
You know how in old paintings-- and sometimes in real life-- you see this bright beam breaking through the clouds and this kind of spotlight of Heaven beams down? It was like that, only in my bathroom. A brilliant white beam of light was bursting forth from the alcove where my shower currently sits. It was like God was taking a shower in my bathroom.
I can't wait to -- quite literally-- bathe in the light of God. Totally awesome.
PS: As some of you might note, last year on this date I was rushed into surgery to cut a "window" in my heart (well, my pericardium, to be exact, the sac around my heart). This was how metastatic breast cancer made itself known to me. It is not lost on me that today, one year later, I am writing about the the Light of God pouring through a hole cut in my roof. And about the power of transformation. This world is mysterious and beautiful, my friends. And it has a wicked sense of humor.
I am also removing a couple of walls and adding some sliding barn-like doors to open one space and define another as my studio. Oh, AND I am getting a bathtub after living without one for 10 years now. Bathing is more than a hobby to me. I take lounging in hot water seriously. I am getting a 5 1/2 ft cast iron claw foot (please say a novena for the guys hauling it up my narrow farm-house stairs) and I am totally stoked about it.
It is remarkable to experience change happening after imagining and wanting it for so long. It is noisy and dusty and inconvenient, sure, but kinda wonderful at the same time. Transformation is powerful. There is something literally awesome about it.
Yesterday a solar tube was installed over the spot where my claw foot tub will go. I was out of the house for dinner at some friends when the guys finished for the day, and it was dark when I got home. Brushing my teeth, I noticed the round face of the solar tube installed in my sloping ceiling, thought, oh, cool, and trundled off to bed.
This morning I toddle into the hallway half asleep and head for the john, when it hits me like a major chord: The Light of God.
You know how in old paintings-- and sometimes in real life-- you see this bright beam breaking through the clouds and this kind of spotlight of Heaven beams down? It was like that, only in my bathroom. A brilliant white beam of light was bursting forth from the alcove where my shower currently sits. It was like God was taking a shower in my bathroom.
I can't wait to -- quite literally-- bathe in the light of God. Totally awesome.
PS: As some of you might note, last year on this date I was rushed into surgery to cut a "window" in my heart (well, my pericardium, to be exact, the sac around my heart). This was how metastatic breast cancer made itself known to me. It is not lost on me that today, one year later, I am writing about the the Light of God pouring through a hole cut in my roof. And about the power of transformation. This world is mysterious and beautiful, my friends. And it has a wicked sense of humor.
Monday, July 11, 2011
Gratitude
Yeah, yeah, yeah....
You've heard it all before. My yoga teacher used to end every session by saying:
But here's the thing: She was right. I am here to testify: A grateful heart leads-- at the very least-- to a more peaceful life.
And here's the other thing, the secret thing, as ee cummings would say,
Cultivating a grateful heart leads to a grateful heart.
It really works. Gratitude replicates itself. Once you start the habit, you find yourself experiencing more gratitude more often. I am talking real, authenticate, spontaneous gratitude-- NOT the "I know I should feel grateful" bullshit, which really only serves to re-enforce what a sorry, selfish ass you think you are.
No. This does not even smell anything like that. I have to tell you, even the very things which raise one's hackles can begin to engender gratitude. Sounds crazy, I know. I will not claim it always works for me-- I can still get pissy and grouchy and filled with delusion and despair, as anyone who knows me can well attest. But the mere possibility that this state can spontaneously transform into something like gratitude is stunning and profound. It is a fascinating phenomenon.
But this kind of ordinary magic works against how we have been culturally programed to see the world: Us v Them, Winners/ Losers, With Me Or Against Me.
Years ago I drove cross country with my Dad. Anyone going slower than us was deemed an idiot, anyone going faster than us, an asshole. Sound familiar? Don't we all do that to some extent? My Dad, caught up in the ongoing tele-novella of the highway, would swear, pound the steering wheel, and spew general dissatisfaction with every other vehicle on the road. Do you suppose those idiots and assholes were doing the same inside the little world of their own cars? Probably.
There is an old zen story about a monk in a boat in the fog. Another boat smacks into him.
Why don't you watch where you are going? Don't you see how thick the fog is? You should be more careful!
His boat gets hit again. Then again.
What do you think you are doing? You idiot!
The boat pulls up beside him, close enough so the monk can at last see it through the thick fog. The boat is empty. The monk's emotion evaporates. He laughs. He realizes all boats are empty.
All boats are empty.
For me this is a story about how something that hooks you (a klesha in yoga or buddhist terms) can turn into an opportunity for gratitude. The world is always there for us, Pema Chodron says. It is always in response to us. We can be grateful for that. It is our patient teacher who never gives up on us. It stands aside while we beat the shit out of ourselves if that is what we want or need to do. When we turn back to re-engage, our world is right there for us. Always ready to teach us as much as we are ready to learn about ourselves.
Two last things:
I started this post in response to a weekend full of kindness visited upon me by good friends, mere acquaintances and family. I am so grateful for each of them. Grateful to be part of a world where the exchange of love in thought, word and deed is not merely possible, but actually takes place. I love that about human beings. I love it when we live up to our potential to love one another. Go, team!
And that trip I took cross country with my Dad? I was on my way to a month-long meditation retreat at Gampo Abbey. The whole way there I was aware of how reactive my Dad was to the traffic around us. The whole way back I was aware of how reactive I was to my Dad.
For this, too, I am grateful.
As I am for you, gentle reader.
You've heard it all before. My yoga teacher used to end every session by saying:
A grateful heart leads to a peaceful life.I had to say out loud at least one thing for which I was grateful. Then, I had to do it without rolling my eyes. Then, I had express my gratitude for something other then my yoga teacher . Let me tell you, it weren't easy for a dyed-in-the-mind, affirmation-scoffing wise-ass like me.
But here's the thing: She was right. I am here to testify: A grateful heart leads-- at the very least-- to a more peaceful life.
And here's the other thing, the secret thing, as ee cummings would say,
"... here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life:"
Cultivating a grateful heart leads to a grateful heart.
It really works. Gratitude replicates itself. Once you start the habit, you find yourself experiencing more gratitude more often. I am talking real, authenticate, spontaneous gratitude-- NOT the "I know I should feel grateful" bullshit, which really only serves to re-enforce what a sorry, selfish ass you think you are.
No. This does not even smell anything like that. I have to tell you, even the very things which raise one's hackles can begin to engender gratitude. Sounds crazy, I know. I will not claim it always works for me-- I can still get pissy and grouchy and filled with delusion and despair, as anyone who knows me can well attest. But the mere possibility that this state can spontaneously transform into something like gratitude is stunning and profound. It is a fascinating phenomenon.
But this kind of ordinary magic works against how we have been culturally programed to see the world: Us v Them, Winners/ Losers, With Me Or Against Me.
Years ago I drove cross country with my Dad. Anyone going slower than us was deemed an idiot, anyone going faster than us, an asshole. Sound familiar? Don't we all do that to some extent? My Dad, caught up in the ongoing tele-novella of the highway, would swear, pound the steering wheel, and spew general dissatisfaction with every other vehicle on the road. Do you suppose those idiots and assholes were doing the same inside the little world of their own cars? Probably.
There is an old zen story about a monk in a boat in the fog. Another boat smacks into him.
Why don't you watch where you are going? Don't you see how thick the fog is? You should be more careful!
His boat gets hit again. Then again.
What do you think you are doing? You idiot!
The boat pulls up beside him, close enough so the monk can at last see it through the thick fog. The boat is empty. The monk's emotion evaporates. He laughs. He realizes all boats are empty.
All boats are empty.
For me this is a story about how something that hooks you (a klesha in yoga or buddhist terms) can turn into an opportunity for gratitude. The world is always there for us, Pema Chodron says. It is always in response to us. We can be grateful for that. It is our patient teacher who never gives up on us. It stands aside while we beat the shit out of ourselves if that is what we want or need to do. When we turn back to re-engage, our world is right there for us. Always ready to teach us as much as we are ready to learn about ourselves.
Two last things:
I started this post in response to a weekend full of kindness visited upon me by good friends, mere acquaintances and family. I am so grateful for each of them. Grateful to be part of a world where the exchange of love in thought, word and deed is not merely possible, but actually takes place. I love that about human beings. I love it when we live up to our potential to love one another. Go, team!
And that trip I took cross country with my Dad? I was on my way to a month-long meditation retreat at Gampo Abbey. The whole way there I was aware of how reactive my Dad was to the traffic around us. The whole way back I was aware of how reactive I was to my Dad.
For this, too, I am grateful.
As I am for you, gentle reader.
Monday, June 20, 2011
Good News/Old News/New News
Good news: Got the results from the latest CT scan: The metastasis on my liver is so reduced that the radiologist had to mark the spots so the doc wouldn't miss them. This is a remarkable improvement, one that made Dr T grin from ear to ear: The Arimedex is working!
During the exam ("And how are you feeling?") I brought up my continuing weight gain (50 lbs as of last week's visit).
Well, Dr T said, weight gain might be considered another positive sign that the Arimedex is working. Metastasis to the liver is associated with loss of appetite and unpleasant changes in taste, and once that hindrance to eating vast quantities of food is removed, I could return to stuffing myself like the pig I am. (Okay, he did not put it exactly that way....) I told him that he had best not say that while near my lower extremities as I might not be able to control my impulse to kick him in the nuts. (Okay, I did not put it exactly that way... but close.)
I am met with total bewilderment. (He never looks more like Charlie Brown then in those rare moments of befuddlement.) What could I possibly mean? I take a deep breath and launch into the breach: I feel dismissed, discounted, and yes, a bit shamed, insulted and indignant when he continues to deny that Arimedex has a causal relationship to my weight gain.
He takes the opportunity to recite the same statistics (for the third time, now) purporting to prove that the percentage of women who gain weight on Arimedex is no different than the percentage who gain weight on a placebo. And while he has no doubt that "you can find information on the internet that associates Arimedex with weight gain," he has not seen it in his own practice.
To which I say, "Perhaps you have not seen it in your own practice because you do not think it exists. With all due respect, I may not be the first of your patients to report weight gain. If you don't acknowledge it in my case, you may have dismissed it in others as well."
"Oh, weight gain is definitely associated with Arimedex," he says now, "Just not at a greater percentage than weight gain without Arimedex..."
Huh?
"There are a lot of factors that contribute to weight gain as we age..."
"Granted. But. I have 50+ years of experience living in this body at a variety of weights, and in a variety of relationships with food and exercise. You are the expert in this room on cancer, but I have to consider myself the expert on my own body.
"Most recently: I was post-menapausal (prematurely, due to chemotherapy) for a number of years before I started a serious yoga practice, working one-on-one with a teacher, one to three times a week, two hours a pop. I attribute my slow and consistent weight loss over the last 3 1/2 years (in spite of the challenges of my aging body) to yoga and the mindfulness, self-knowledge, and self-acceptance that came with it.
"The last 20 lbs or so came off precipitously-- in two or three months-- likely due to the progression of the cancer, the resulting surgery and my inability to eat. During that time I was almost completely sedentary, spending most of my time in bed, and physically unable to do my usual activities-- both in the yoga studio and outside of it.
"As I felt better and started eating and moving again, my weight sky-rocketed. The biggest difference between what I was doing previously-- while slowly losing weight-- and what I am doing now-- while quickly gaining weight? Arimedex.
"So, when you tell me that my weight gain has more to do with my "eating and activity level" than with Arimedex, I find it dismissive and somewhat insulting. It presumes that I am unaware of my behavior around eating and exercise, and that if I just did less of one and more of the other, I would not be in this predicament. That is a common assumption for doctors to make about overweight patients. But it is not always as simple as 'calories in, calories out', and when you reduce it to that, you are discounting me and my experience as the inhabitant of this body."
"Well, I don't think I really said any of that. I certainly don't mean to dismiss or discount you. But let's not go backwards. Clearly, in your case, weight gain with Arimedex IS an issue. So now question is: What can we do to help you?"
"Wow. Well, I am not sure. It is helpful simply to not have the question taken off the table, I'll tell you that. To be able to engage in a discussion about it, that is helpful. What would you suggest?"
"We can refer you to a diet and exercise program...."
(Note to self: Do NOT kick the nice doctor.)
"I understand your reluctance to take me off Arimedex. I am also wary of getting off something that is having such positive results. And if I have to choose between cancer and fat, believe me, I choose fat. But do I have to choose? Let me ask you this: My understanding is that you do not usually switch hormone medication until it fails (ie, the cancer progresses), and that once you get off one medication, you don't return to it. Is that true?"
"Not entirely. It is unusual to switch from a hormone medication that is working, but it has been done. And it is unusual to return to a medication once it has failed, but that has been done as well-- and sometimes with good results. There is no real data on either scenario. And no data on how effective it is to return to a medication that was working once you've switched to a different one. There are no studies in these areas."
"And is there a different hormone medication you might consider for me?"
***************************************
The short answer is yes. It is a in a different family of medications then the aromatase inhibitors that Arimedex belongs to. It starts with an F. (I will call to get more info, I didn't want to press him to spell it out for me, nor did I have a pen and paper handy to write it down.) It is a once a month injection.
I ask about side effects. He tells me it does not have any. Whatever. I don't question him further. Once I get the name straight, I'll put in my due diligence on the rickety roller-coaster of the internet, and see what others-- including those notoriously unreliable sources known as patients -- have to say about this drug.
I leave the room shaken and holding back emotion that I do not even really understand. I feel so vulnerable. It is hard to stick up for yourself in the face of a disbelieving authority. I don't feel proud of myself, which it only now occurs to me I might rightly feel. I'd like to hide under a rock. I go to the bathroom, have myself a little cry, wash my face, put on my shades and head out to the infusion room. They poked me three times earlier this morning to get a line in my vein, and it is time to fill up on Zometa to help fight metastasis in my bones.
Just another day as a person with cancer.
During the exam ("And how are you feeling?") I brought up my continuing weight gain (50 lbs as of last week's visit).
Well, Dr T said, weight gain might be considered another positive sign that the Arimedex is working. Metastasis to the liver is associated with loss of appetite and unpleasant changes in taste, and once that hindrance to eating vast quantities of food is removed, I could return to stuffing myself like the pig I am. (Okay, he did not put it exactly that way....) I told him that he had best not say that while near my lower extremities as I might not be able to control my impulse to kick him in the nuts. (Okay, I did not put it exactly that way... but close.)
I am met with total bewilderment. (He never looks more like Charlie Brown then in those rare moments of befuddlement.) What could I possibly mean? I take a deep breath and launch into the breach: I feel dismissed, discounted, and yes, a bit shamed, insulted and indignant when he continues to deny that Arimedex has a causal relationship to my weight gain.
He takes the opportunity to recite the same statistics (for the third time, now) purporting to prove that the percentage of women who gain weight on Arimedex is no different than the percentage who gain weight on a placebo. And while he has no doubt that "you can find information on the internet that associates Arimedex with weight gain," he has not seen it in his own practice.
To which I say, "Perhaps you have not seen it in your own practice because you do not think it exists. With all due respect, I may not be the first of your patients to report weight gain. If you don't acknowledge it in my case, you may have dismissed it in others as well."
"Oh, weight gain is definitely associated with Arimedex," he says now, "Just not at a greater percentage than weight gain without Arimedex..."
Huh?
"There are a lot of factors that contribute to weight gain as we age..."
"Granted. But. I have 50+ years of experience living in this body at a variety of weights, and in a variety of relationships with food and exercise. You are the expert in this room on cancer, but I have to consider myself the expert on my own body.
"Most recently: I was post-menapausal (prematurely, due to chemotherapy) for a number of years before I started a serious yoga practice, working one-on-one with a teacher, one to three times a week, two hours a pop. I attribute my slow and consistent weight loss over the last 3 1/2 years (in spite of the challenges of my aging body) to yoga and the mindfulness, self-knowledge, and self-acceptance that came with it.
"The last 20 lbs or so came off precipitously-- in two or three months-- likely due to the progression of the cancer, the resulting surgery and my inability to eat. During that time I was almost completely sedentary, spending most of my time in bed, and physically unable to do my usual activities-- both in the yoga studio and outside of it.
"As I felt better and started eating and moving again, my weight sky-rocketed. The biggest difference between what I was doing previously-- while slowly losing weight-- and what I am doing now-- while quickly gaining weight? Arimedex.
"So, when you tell me that my weight gain has more to do with my "eating and activity level" than with Arimedex, I find it dismissive and somewhat insulting. It presumes that I am unaware of my behavior around eating and exercise, and that if I just did less of one and more of the other, I would not be in this predicament. That is a common assumption for doctors to make about overweight patients. But it is not always as simple as 'calories in, calories out', and when you reduce it to that, you are discounting me and my experience as the inhabitant of this body."
"Well, I don't think I really said any of that. I certainly don't mean to dismiss or discount you. But let's not go backwards. Clearly, in your case, weight gain with Arimedex IS an issue. So now question is: What can we do to help you?"
"Wow. Well, I am not sure. It is helpful simply to not have the question taken off the table, I'll tell you that. To be able to engage in a discussion about it, that is helpful. What would you suggest?"
"We can refer you to a diet and exercise program...."
(Note to self: Do NOT kick the nice doctor.)
"I understand your reluctance to take me off Arimedex. I am also wary of getting off something that is having such positive results. And if I have to choose between cancer and fat, believe me, I choose fat. But do I have to choose? Let me ask you this: My understanding is that you do not usually switch hormone medication until it fails (ie, the cancer progresses), and that once you get off one medication, you don't return to it. Is that true?"
"Not entirely. It is unusual to switch from a hormone medication that is working, but it has been done. And it is unusual to return to a medication once it has failed, but that has been done as well-- and sometimes with good results. There is no real data on either scenario. And no data on how effective it is to return to a medication that was working once you've switched to a different one. There are no studies in these areas."
"And is there a different hormone medication you might consider for me?"
***************************************
The short answer is yes. It is a in a different family of medications then the aromatase inhibitors that Arimedex belongs to. It starts with an F. (I will call to get more info, I didn't want to press him to spell it out for me, nor did I have a pen and paper handy to write it down.) It is a once a month injection.
I ask about side effects. He tells me it does not have any. Whatever. I don't question him further. Once I get the name straight, I'll put in my due diligence on the rickety roller-coaster of the internet, and see what others-- including those notoriously unreliable sources known as patients -- have to say about this drug.
I leave the room shaken and holding back emotion that I do not even really understand. I feel so vulnerable. It is hard to stick up for yourself in the face of a disbelieving authority. I don't feel proud of myself, which it only now occurs to me I might rightly feel. I'd like to hide under a rock. I go to the bathroom, have myself a little cry, wash my face, put on my shades and head out to the infusion room. They poked me three times earlier this morning to get a line in my vein, and it is time to fill up on Zometa to help fight metastasis in my bones.
Just another day as a person with cancer.
Saturday, June 4, 2011
Ending the War
Wow. I just tried on my favorite shorts from last summer, assuming I would want to bring them with me on my trip to NYC and Maryland (where temperatures have been well above the high of 68 we've hit in here in the PNW), and guess what? They don't fit me anymore. Okay. How about those capris I had to stop wearing because they were falling off of me? I dig them out of the the "give" pile. They don't fit either.
Wah.
That's all, really. How challenging it can be to love and be kind to yourself when you do not fit the mold society has mapped out ( and you have internalized) about what is acceptable. I am going to the land of shopping, for Pete's sake-- but shopping for clothes at my current weight is primarily a lesson in humiliation. It ain't fun, and it often is not fruitful either.
I called one of my sisters-- as a fellow Gordon Girl I knew she would feel my pain. As I told her, I will be fine, I have clothes that still fit, and after all, I am the girl who had to wear her father's UGGs to the wedding of the century last November in Seattle. (Long story, for which you kinda had to be there.) But if I can do that, and get over myself and have a good time, I can do anything!
My point is that there are challenges to being kind to ourselves. And often we are so accustomed to the particular ways in which we hate ourselves (and the judgements we hold that tell us it is only proper and right to do so) that we do not even notice that we are ones wielding the sharp knives with our very own hands.
Remember John Lennon? ( I always think of him when I head to NYC.)
Stephen Levine was approached by a man in a wheelchair after he told that story in a lecture. The man was frail but glowing. He had a huge smile. He said: Dying of cancer, I end the war.
Here's what I think: The war is where-ever you find it. Where-ever separation and hatred spring up. So I say unto you: Wearing my fat pants, I end the war.
Blessings.
Wah.
That's all, really. How challenging it can be to love and be kind to yourself when you do not fit the mold society has mapped out ( and you have internalized) about what is acceptable. I am going to the land of shopping, for Pete's sake-- but shopping for clothes at my current weight is primarily a lesson in humiliation. It ain't fun, and it often is not fruitful either.
I called one of my sisters-- as a fellow Gordon Girl I knew she would feel my pain. As I told her, I will be fine, I have clothes that still fit, and after all, I am the girl who had to wear her father's UGGs to the wedding of the century last November in Seattle. (Long story, for which you kinda had to be there.) But if I can do that, and get over myself and have a good time, I can do anything!
My point is that there are challenges to being kind to ourselves. And often we are so accustomed to the particular ways in which we hate ourselves (and the judgements we hold that tell us it is only proper and right to do so) that we do not even notice that we are ones wielding the sharp knives with our very own hands.
Remember John Lennon? ( I always think of him when I head to NYC.)
War is over,
If you want it.And the story from Stephen Levine's Healing Into Life and Death about the man who wanted to study at a Zen monastery in Japan around the outbreak of WWII? He is closely questioned: Why do you want to come to our country now? His answer: Making a cup of tea, I end the war. They let him in.
Stephen Levine was approached by a man in a wheelchair after he told that story in a lecture. The man was frail but glowing. He had a huge smile. He said: Dying of cancer, I end the war.
Here's what I think: The war is where-ever you find it. Where-ever separation and hatred spring up. So I say unto you: Wearing my fat pants, I end the war.
Blessings.
Tuesday, May 31, 2011
In The Realm of the Hungry Ghosts
"Nothing records the effects of a sad life so graphically as the human body.”
Fascinating interview with Dr. Gabor Mate, Canadian physician specializing in how early childhood effects brain development. His latest book is In the Realm of Hungry Ghosts: Close Encounters with Addiction. There is more on the website democracynow.org. We talking bout a revolution, yo.
DR. GABOR MATÉ: The hardcore drug addicts that I treat, but according to all studies in the States, as well, are, without exception, people who have had extraordinarily difficult lives. And the commonality is childhood abuse. In other words, these people all enter life under extremely adverse circumstances. Not only did they not get what they need for healthy development, they actually got negative circumstances of neglect. I don’t have a single female patient in the Downtown Eastside who wasn’t sexually abused, for example, as were many of the men, or abused, neglected and abandoned serially, over and over again.
And that’s what sets up the brain biology of addiction. In other words, the addiction is related both psychologically, in terms of emotional pain relief, and neurobiological development to early adversity.
AMY GOODMAN: What does the title of your book mean, In the Realm of Hungry Ghosts?
DR. GABOR MATÉ: Well, it’s a Buddhist phrase. In the Buddhists’ psychology, there are a number of realms that human beings cycle through, all of us. One is the human realm, which is our ordinary selves. The hell realm is that of unbearable rage, fear, you know, these emotions that are difficult to handle. The animal realm is our instincts and our id and our passions.
Now, the hungry ghost realm, the creatures in it are depicted as people with large empty bellies, small mouths and scrawny thin necks. They can never get enough satisfaction. They can never fill their bellies. They’re always hungry, always empty, always seeking it from the outside. That speaks to a part of us that I have and everybody in our society has, where we want satisfaction from the outside, where we’re empty, where we want to be soothed by something in the short term, but we can never feel that or fulfill that insatiety from the outside. The addicts are in that realm all the time. Most of us are in that realm some of the time. And my point really is, is that there’s no clear distinction between the identified addict and the rest of us. There’s just a continuum in which we all may be found. They’re on it, because they’ve suffered a lot more than most of us.
AMY GOODMAN: Can you talk about the biology of addiction?
DR. GABOR MATÉ: For sure. You see, if you look at the brain circuits involved in addiction—and that’s true whether it’s a shopping addiction like mine or an addiction to opiates like the heroin addict—we’re looking for endorphins in our brains. Endorphins are the brain’s feel good, reward, pleasure and pain relief chemicals. They also happen to be the love chemicals that connect us to the universe and to one another.
Now, that circuitry in addicts doesn’t function very well, as the circuitry of incentive and motivation, which involves the chemical dopamine, also doesn’t function very well. Stimulant drugs like cocaine and crystal meth, nicotine and caffeine, all elevate dopamine levels in the brain, as does sexual acting out, as does extreme sports, as does workaholism and so on.
Now, the issue is, why do these circuits not work so well in some people, because the drugs in themselves are not surprisingly addictive. And what I mean by that is, is that most people who try most drugs never become addicted to them. And so, there has to be susceptibility there. And the susceptible people are the ones with these impaired brain circuits, and the impairment is caused by early adversity, rather than by genetics.
AMY GOODMAN: What do you mean, “early adversity”?
DR. GABOR MATÉ: Well, the human brain, unlike any other mammal, for the most part develops under the influence of the environment. And that’s because, from the evolutionary point of view, we developed these large heads, large fore-brains, and to walk on two legs we have a narrow pelvis. That means—large head, narrow pelvis—we have to be born prematurely. Otherwise, we would never get born. The head already is the biggest part of the body. Now, the horse can run on the first day of life. Human beings aren’t that developed for two years. That means much of our brain development, that in other animals occurs safely in the uterus, for us has to occur out there in the environment. And which circuits develop and which don’t depend very much on environmental input.
When people are mistreated, stressed or abused, their brains don’t develop the way they ought to. It’s that simple. And unfortunately, my profession, the medical profession, puts all the emphasis on genetics rather than on the environment, which, of course, is a simple explanation. It also takes everybody off the hook.
AMY GOODMAN: What do you mean, it takes people off the hook?
DR. GABOR MATÉ: Well, if people’s behaviors and dysfunctions are regulated, controlled and determined by genes, we don’t have to look at child welfare policies, we don’t have to look at the kind of support that we give to pregnant women, we don’t have to look at the kind of non-support that we give to families, so that, you know, most children in North America now have to be away from their parents from an early age on because of economic considerations. And especially in the States, because of the welfare laws, women are forced to go find low-paying jobs far away from home, often single women, and not see their kids for most of the day. Under those conditions, kids’ brains don’t develop the way they need to.
And so, if it’s all caused by genetics, we don’t have to look at those social policies; we don’t have to look at our politics that disadvantage certain minority groups, so cause them more stress, cause them more pain, in other words, more predisposition for addictions; we don’t have to look at economic inequalities. If it’s all genes, it’s all—we’re all innocent, and society doesn’t have to take a hard look at its own attitudes and policies.
AMY GOODMAN: Can you talk about this whole approach of criminalization versus harm reduction, how you think addicts should be treated, and how they are, in the United States and Canada?
DR. GABOR MATÉ: Well, the first point to get there is that if people who become severe addicts, as shown by all the studies, were for the most part abused children, then we realize that the war on drugs is actually waged against people that were abused from the moment they were born, or from an early age on. In other words, we’re punishing people for having been abused. That’s the first point.
The second point is, is that the research clearly shows that the biggest driver of addictive relapse and addictive behavior is actually stress. In North America right now, because of the economic crisis, a lot of people are eating junk food, because junk foods release endorphins and dopamine in the brain. So that stress drives addiction.
Now imagine a situation where we’re trying to figure out how to help addicts. Would we come up with a system that stresses them to the max? Who would design a system that ostracizes, marginalizes, impoverishes and ensures the disease of the addict, and hope, through that system, to rehabilitate large numbers? It can’t be done. In other words, the so-called “war on drugs,” which, as the new drug czar points out, is a war on people, actually entrenches addiction deeply. Furthermore, it institutionalizes people in facilities where the care is very—there’s no care. We call it a “correctional” system, but it doesn’t correct anything. It’s a punitive system. So people suffer more, and then they come out, and of course they’re more entrenched in their addiction than they were when they went in.
AMY GOODMAN: I’m curious about your own history, Gabor Maté.
DR. GABOR MATÉ: Yeah.
AMY GOODMAN: You were born in Nazi-occupied Hungary?
DR. GABOR MATÉ: Well, ADD has a lot to do with that. I have attention deficit disorder myself. And again, most people see it as a genetic problem. I don’t. It actually has to do with those factors of brain development, which in my case occurred as a Jewish infant under Nazi occupation in the ghetto of Budapest. And the day after the pediatrician—sorry, the day after the Nazis marched into Budapest in March of 1944, my mother called the pediatrician and says, “Would you please come and see my son, because he’s crying all the time?” And the pediatrician says, “Of course I’ll come. But I should tell you, all my Jewish babies are crying.”
Now infants don’t know anything about Nazis and genocide or war or Hitler. They’re picking up on the stresses of their parents. And, of course, my mother was an intensely stressed person, her husband being away in forced labor, her parents shortly thereafter being departed and killed in Auschwitz. Under those conditions, I don’t have the kind of conditions that I need for the proper development of my brain circuits. And particularly, how does an infant deal with that much stress? By tuning it out. That’s the only way the brain can deal with it. And when you do that, that becomes programmed into the brain.
And so, if you look at the preponderance of ADD in North America now and the three millions of kids in the States that are on stimulant medication and the half-a-million who are on anti-psychotics, what they’re really exhibiting is the effects of extreme stress, increasing stress in our society, on the parenting environment. Not bad parenting. Extremely stressed parenting, because of social and economic conditions. And that’s why we’re seeing such a preponderance.
So, in my case, that also set up this sense of never being soothed, of never having enough, because I was a starving infant. And that means, all my life, I have this propensity to soothe myself. How do I do that? Well, one way is to work a lot and to gets lots of admiration and lots of respect and people wanting me. If you get the impression early in life that the world doesn’t want you, then you’re going to make yourself wanted and indispensable. And people do that through work. I did it through being a medical doctor. I also have this propensity to soothe myself through shopping, especially when I’m stressed, and I happen to shop for classical compact music. But it goes back to this insatiable need of the infant who is not soothed, and they have to develop, or their brain develop, these self-soothing strategies.
AMY GOODMAN: How do you think kids with ADD, with attention deficit disorder, should be treated?
DR. GABOR MATÉ: Well, if we recognize that it’s not a disease and it’s not genetic, but it’s a problem of brain development, and knowing the good news, fortunately—and this is also true for addicts—that the brain, the human brain, can develop new circuits even later on in life—and that’s called neuroplasticity, the capacity of the brain to be molded by new experience later in life—then the question becomes not of how to regulate and control symptoms, but how do you promote development. And that has to do with providing kids with the kind of environment and nurturing that they need so that those circuits can develop later on.
That’s also, by the way, what the addict needs. So instead of a punitive approach, we need to have a much more compassionate, caring approach that would allow these people to develop, because the development is stuck at a very early age.
AMY GOODMAN: You began your talk last night at Columbia, which I went to hear, at the law school, with a quote, and I’d like you to end our conversation with that quote.
DR. GABOR MATÉ: Naguib Mahfouz, the great Egyptian writer. He said that "Nothing records the effects of a sad life” so completely as the human body—“so graphically as the human body.” And you see that sad life in the faces and bodies of my patients.
Monday, May 30, 2011
Patience is a Virtue
My Mom quoted that line from Shakespeare. A lot. It is not a virtue with which my family is especially gifted.
May has been a bit of a tough month for me.
Not to worry, everything is fine, it's just very old stuff surfacing. And I don't really think I want to say anymore about that here and now, but I do want to check in, and say hello, I'm here, I'm OK, I am just PROCESSING some stuff. (You know, kinda like when the colored beach ball spins around on your computer screen.) I'm still working away over here, but just don't have a lot of words yet.
I am trying to have "patience with all that is unsolved within my heart"... And hoping, like Rilke advises, to learn to love the questions until I can live my way, someday, into the answers.
May has been a bit of a tough month for me.
Not to worry, everything is fine, it's just very old stuff surfacing. And I don't really think I want to say anymore about that here and now, but I do want to check in, and say hello, I'm here, I'm OK, I am just PROCESSING some stuff. (You know, kinda like when the colored beach ball spins around on your computer screen.) I'm still working away over here, but just don't have a lot of words yet.
I am trying to have "patience with all that is unsolved within my heart"... And hoping, like Rilke advises, to learn to love the questions until I can live my way, someday, into the answers.
Thursday, May 5, 2011
The Skinny on Hormonal Fat
Okay, true enough: I told Nina, my oncology nurse, that of all the symptoms brought on by Arimedex (painful achey joints, sudden debilitating tiredness, and significant increase in centrally-located pudge) the one I was least concerned about was the weight gain. Hey, I've had practice being fat!
But the truth is, it has been discouraging to experience my weight going up up up (again) after years of working to bring it down. (Okay, sure, the cancer/not-being-able-to-eat-thing accounts for the last 25 lbs that fell away last summer.) It has come back so suddenly that I have not grown accustomed to it, and I am newly aware of just how uncomfortable it is--- and that's besides the challenge it presents to my ego and my aesthetic sensibilities.
I am also newly aware of how often we are invited to hate our bodies in this culture (and I still think that applies especially --although not exclusively-- to women). I have to remind myself, Hey, you know-- I can still walk around in this body (not as far or as fast as I used to, but it gets me from here to there). I can see, smell, hear, taste, feel and experience beauty. I can go to the bathroom (Yay! No, really, if you've never been challenged in this area you have NO IDEA how grateful I am). And when I consider all the thousands of functions my body takes care of without my even being aware of it -- I don't remind myself to blink or or breathe or circulate blood. If I want a drink of water, my body picks up the glass without my brain even consciously issuing the command-- I really have to admit that there is so much more going right in my body then going wrong. For a 50+ year-old vehicle with some major issues, it is holding its own pretty damn well.
Still... I was more comfortable about 35 lbs ago. Is there something I can do about this? What IS the connection between every molecule of estrogen being sucked out of my system and this newly inflated spare tire? Well, I've done some looking into it -- after all, Curious Minds (especially female minds over 45) Want to Know. Here's the scientific skinny:
But here's some advice beyond the usual suspects:
Theodore Roethke has a poem that goes, in part:
God bless the Ground! I shall walk softly there,
And learn by going where I have to go.
Yeah. As another poet said,
Aye, there's the rub!
But the truth is, it has been discouraging to experience my weight going up up up (again) after years of working to bring it down. (Okay, sure, the cancer/not-being-able-to-eat-thing accounts for the last 25 lbs that fell away last summer.) It has come back so suddenly that I have not grown accustomed to it, and I am newly aware of just how uncomfortable it is--- and that's besides the challenge it presents to my ego and my aesthetic sensibilities.
I am also newly aware of how often we are invited to hate our bodies in this culture (and I still think that applies especially --although not exclusively-- to women). I have to remind myself, Hey, you know-- I can still walk around in this body (not as far or as fast as I used to, but it gets me from here to there). I can see, smell, hear, taste, feel and experience beauty. I can go to the bathroom (Yay! No, really, if you've never been challenged in this area you have NO IDEA how grateful I am). And when I consider all the thousands of functions my body takes care of without my even being aware of it -- I don't remind myself to blink or or breathe or circulate blood. If I want a drink of water, my body picks up the glass without my brain even consciously issuing the command-- I really have to admit that there is so much more going right in my body then going wrong. For a 50+ year-old vehicle with some major issues, it is holding its own pretty damn well.
Still... I was more comfortable about 35 lbs ago. Is there something I can do about this? What IS the connection between every molecule of estrogen being sucked out of my system and this newly inflated spare tire? Well, I've done some looking into it -- after all, Curious Minds (especially female minds over 45) Want to Know. Here's the scientific skinny:
Hormones Involved in Weight Maintenance
Estrogen: Estrogen is the female sex hormone that is responsible for causing monthly ovulation. During female menopause, your estrogen levels decline rapidly, causing your body to stop ovulating. However, estrogen also seems to play a big role in menopausal weight gain. As your ovaries produce less estrogen, your body looks for other places to get needed estrogen from. Fat cells in your body can produce estrogen, so your body works harder to convert calories into fat to increase estrogen levels. Unfortunately for you, fat cells don't burn calories the way muscle cells do, which causes you to pack on the unwanted pounds.
Progesterone: During menopause, progesterone levels will also decrease. Like estrogen, lower levels of this hormone can be responsible for many of the symptoms of menopause and that includes weight gain, or at least the appearance of it. Water retention and menopause often go hand in hand since water weight and bloating are caused by decreased progesterone levels. Though this doesn't actually result in weight gain, your clothes will probably feel a bit tighter and you may feel a bit heavier. Water retention and bloating usually disappear within a few months.
Androgen: This hormone is responsible for sending your new weight directly to your middle section. In fact, weight gain during menopausal years is often known as "middle age spread" because of the rapid growth of the mid-section. Often, one of the first signs of menopause is an increase of androgen in your body, which causes you to gain weight around your abdominals instead of around your lower half.
Testosterone: Testosterone helps your body to create lean muscle mass out of the calories that you take in. Muscle cells burn more calories than fat cells do, increasing your metabolism. In natural menopause, levels of testosterone drop resulting in the loss of this muscle. Unfortunately, this means a lower metabolism. The lower your metabolism is, the slower your body burns calories.Terrific! At least now we know-- it is Real, it is, in some ways, Not Our Fault. But. Is there anything we can do about it? Pretty much the same old, same old:
Eat a balanced diet. Avoid refined sugars and indulge in fruits and vegetables.
Avoid crash diets. Starvation will only cause your metabolism to slow down, causing you to gain more weight later on.
Don't lose large amounts of weight. Being very thin can lead to an increased chance of developing osteoporosis.
Limit your intake of caffeine, nicotine, and alcohol. These can exacerbate water retention.
Remain active. Do aerobics to increase your metabolism and burn fat. Do weight bearing activities such as walking and cycling to increase muscle mass and ward off osteoporosis.
But here's some advice beyond the usual suspects:
Instead of hating your new body, try to be more accepting of yourself.
Focus on being healthy and active, not trying to fit into your old clothes.Yeah. I hear that. Accepting where you are, not despising what you have. Cultivating gratitude. For the first year of our practice together, my yoga teacher Meg would end nearly every session by saying, "A grateful heart leads to a peaceful life." The presence of pudge can definitely present a daily challenge to my ability to cultivate gratitude for my body.
Theodore Roethke has a poem that goes, in part:
God bless the Ground! I shall walk softly there,
And learn by going where I have to go.
Yeah. As another poet said,
Aye, there's the rub!
Sunday, May 1, 2011
May Day! May Day! We Need a New Paradigm, STAT!
Sir Ken Robinson is talking about a revolution!
Changing Education Paradigms
This guy is brilliant!
Find this video and more with Ken Robinson on You Tube. He made a big splash at the TED conference a few years ago and has several books out. If you are an artist, an educator, or just a fully functional human being, you know we need a new way of thinking about education.
Please share.
Saturday, April 30, 2011
Question Reality
What is real? This moment or how I perceive this moment?
Do I feel better? Do I feel worse? And what happens if and when I add up all the signs and decide-- Uh-oh, I am not as well as I have been. Is this the beginning of the long slope to debilitating illness and death? Maybe I don't have 20 years, after all. Maybe I am one of those people who only lives two years out from their diagnosis. Could be. Ain't no promises. WHAT THE FUCK!
How does this thought, or this decision, or the acceptance of this reality change my perception of my symptoms? Does it turn my tiredness into lethargy? Does everything get colored by my friendly old foe, the mind-habit of depression?
I long for bed and book these days-- even when the sun is (rarely) shining. I undertake social engagements, and I enjoy them -- but I am always happy if not eager to come home to my sweet dog, my quiet, messy house, and my latest book. (The Master by Colm Toibin, thank you, Janet!)
In this novel about the the largely interior life of the writer Henry James, the protagonist, too, looks forward to getting back to his solitary room. He is conscious of being set apart-- partially due to his unacknowledged homosexuality, which is in a way a kind of emblem for all the other things about himself he cannot share. Cancer, too, can stand in for all the things about ourselves we cannot share.
It can be a burden, cancer, for one's self and for others and sometimes I just get tired of being its poster child.
But who says I am its poster child? Whose reality is that? Can I no longer have a good day that is not a good-day-with-cancer, or a bad day that is not a bad-day-because-of-cancer? Does cancer define me? Is that a choice I make?
Maybe the truth is that it defines me as much or as little as I let it-- just like all the other circumstances of our lives. I am not talking about denying them, just not letting circumstances define us. (Didn't our punk-dharma pal Vinny have something to say about that a few posts ago?)
I have an old story I tell about this:
One summer I took care of my grandmother (Mummu) and her sister, my great Aunt Frances. They were both well past 80-something. Mummu was the little sister, nicknamed "Little Snowflake" by the young men in the Finnish community who found her a charming skiing companion. She was maybe 20 when she skedaddled out of the house to marry my grandfather, leaving her older sister, Frances, to return home from her career to care for their aging parents. Frances ended up staying home, turning away the same suitor year after year until her parents died and she finally married (the same guy!) at age 50-something.
Mummu lived with the man she loved in a beautiful house with a lovely garden-- both very important to her-- for more then 50 years. They raised two sons who eventually took over the orchard which was prosperous enough to allow my grandparents to travel once they retired. My Aunt Frances lost her husband in a mysterious logging accident within a few years of their marriage. She lived alone for twenty years in an apartment in Portland, where she taught herself to do things in the dark after she discovered she was going blind.
Which sister was had more reason to protest the hand life dealt her? Which radiated contentment and good humor? Who perceived the world as an enemy dead-set to rob her of any remaining happiness she may have, and who perceived it as a place where joy was still possible everyday? I don't have to tell you, do I?
I'll always remember my Aunt Frances asking me to turn her chair toward the picture window with the astounding view -- the one that my grandparents had always sat side-by side with their backs to, facing their TV.
Why? Mummu objected. (She disliked anyone changing The-Way-Things-Always-Were. After all, she would remind both Frances and myself-- this was her house!) She can't even see out that window!
I like to feel the sun on my face, Frances said. She basked in this small luxury like a grateful cat.
I do not think it ever occurred to my grandmother that she could have shared in this pleasure. Or that her pleasure might have been augmented by the view she complained was being lost on her sister. She would have had to turn her chair around.
That possibility did not exist in her world. Reality or perception?
That's what I keep asking myself: Reality or Perception?
Do I feel better? Do I feel worse? And what happens if and when I add up all the signs and decide-- Uh-oh, I am not as well as I have been. Is this the beginning of the long slope to debilitating illness and death? Maybe I don't have 20 years, after all. Maybe I am one of those people who only lives two years out from their diagnosis. Could be. Ain't no promises. WHAT THE FUCK!
How does this thought, or this decision, or the acceptance of this reality change my perception of my symptoms? Does it turn my tiredness into lethargy? Does everything get colored by my friendly old foe, the mind-habit of depression?
I long for bed and book these days-- even when the sun is (rarely) shining. I undertake social engagements, and I enjoy them -- but I am always happy if not eager to come home to my sweet dog, my quiet, messy house, and my latest book. (The Master by Colm Toibin, thank you, Janet!)
In this novel about the the largely interior life of the writer Henry James, the protagonist, too, looks forward to getting back to his solitary room. He is conscious of being set apart-- partially due to his unacknowledged homosexuality, which is in a way a kind of emblem for all the other things about himself he cannot share. Cancer, too, can stand in for all the things about ourselves we cannot share.
It can be a burden, cancer, for one's self and for others and sometimes I just get tired of being its poster child.
But who says I am its poster child? Whose reality is that? Can I no longer have a good day that is not a good-day-with-cancer, or a bad day that is not a bad-day-because-of-cancer? Does cancer define me? Is that a choice I make?
Maybe the truth is that it defines me as much or as little as I let it-- just like all the other circumstances of our lives. I am not talking about denying them, just not letting circumstances define us. (Didn't our punk-dharma pal Vinny have something to say about that a few posts ago?)
I have an old story I tell about this:
One summer I took care of my grandmother (Mummu) and her sister, my great Aunt Frances. They were both well past 80-something. Mummu was the little sister, nicknamed "Little Snowflake" by the young men in the Finnish community who found her a charming skiing companion. She was maybe 20 when she skedaddled out of the house to marry my grandfather, leaving her older sister, Frances, to return home from her career to care for their aging parents. Frances ended up staying home, turning away the same suitor year after year until her parents died and she finally married (the same guy!) at age 50-something.
Mummu lived with the man she loved in a beautiful house with a lovely garden-- both very important to her-- for more then 50 years. They raised two sons who eventually took over the orchard which was prosperous enough to allow my grandparents to travel once they retired. My Aunt Frances lost her husband in a mysterious logging accident within a few years of their marriage. She lived alone for twenty years in an apartment in Portland, where she taught herself to do things in the dark after she discovered she was going blind.
Which sister was had more reason to protest the hand life dealt her? Which radiated contentment and good humor? Who perceived the world as an enemy dead-set to rob her of any remaining happiness she may have, and who perceived it as a place where joy was still possible everyday? I don't have to tell you, do I?
I'll always remember my Aunt Frances asking me to turn her chair toward the picture window with the astounding view -- the one that my grandparents had always sat side-by side with their backs to, facing their TV.
Why? Mummu objected. (She disliked anyone changing The-Way-Things-Always-Were. After all, she would remind both Frances and myself-- this was her house!) She can't even see out that window!
I like to feel the sun on my face, Frances said. She basked in this small luxury like a grateful cat.
I do not think it ever occurred to my grandmother that she could have shared in this pleasure. Or that her pleasure might have been augmented by the view she complained was being lost on her sister. She would have had to turn her chair around.
That possibility did not exist in her world. Reality or perception?
That's what I keep asking myself: Reality or Perception?
Monday, April 25, 2011
Listening
I was invited to speak to the Woman's Cancer Survivors Group at Celilo last Tuesday. I kept telling people that I was not really planning on speaking---more like facilitating, but that word choice never really caught on.
I sought out the opportunity through Nina, the groovy Oncology Nurse with whom I have confided about all my various "alternative healing modalities" over the years and whose support for the same has been intelligent and steadfast. She turned me on to Renee, whose title I never did catch, but who arranges for these speakers. We talked about the importance of listening, about how little cancer patients have the chance to be heard, and about methods of helping people discover what it is they have to say that I've used in my work, and which I think might be of benefit to other people dealing with cancer.
I got vetted by the social worker, and was signed up as April's speaker. I kept assuring everyone that it was really not about me speaking. Quite the opposite in fact. The irony was lost on most people.
We have such a closed notion that learning or teaching or sharing is a kind of one-way street-- I give, you receive; one is active, the other passive. This does not wash in theatre classrooms, where one of my most prized skills as a teacher is my ability to gently trip my students into having an experience, and then bring their attention to the experience they just had-- before their ego can rub off any rough edges and put it all neatly away as right/wrong, good/bad. Hmmm, I ask my students, Let's see if we can examine just exactly what our human experience is like-- without judging it first.
We could call this listening to ourselves. And maybe in order to be open to truly listening to ourselves we have to recognize that we have something to say. In every writing class I've ever taught I hand out a page long quote from one of my heroes, Brenda Ueland, entitled, Everybody is Talented, Original and Has Something Important to Say. Let's start there. Let's start by assuming you are worthy of being heard, just as you are.
Of course, this was too ambitious for the hour we had to work within. And we spent a lot of time doing things I considered totally incidental to the work at hand ( ie, picking out crayolas). We ran out of time before more then one brave soul could share her writing at the end. After that several people were eager to talk about the experience -- something I would never have allowed in one of my writing classes, but here I figured what-the-hell --we are past time and maybe the more important thing is that they are sharing with one another, not exactly what form that sharing takes. (Although I still maintain that what happens from following the form of Writing Practice -- ie, Everyone Writes/Everyone Reads, and again, and again, and again-- gets down much deeper to the heart of matters and is that much more healing because of it.)
But, hey, it is a foot in the door. The women said they'd never done anything like it. They seemed to enjoy it and felt like they got something out of it. I said I would be happy to come back and do more. Anytime.
How often do we quiet our minds enough to listen to ourselves, let alone another person? I think we can call mindfulness meditation a mode of listening to ourselves. It is a humble skill, largely unrecognized, unpracticed and undervalued in our society.
As I wrote up some Rules for Listening for the support group, I became aware of how they could apply to how we listen to ourselves as well as others. I think they are worth sharing with you.
HOW TO LISTEN:
Relax. You can’t let anything in if you are tightened down. Feel your breath; be present in your body.
Think of your body as a satellite dish (rather than a periscope); Be open all signals, verbal and otherwise.
Drop your agenda. Don’t take notes in your head. Don’t worry about “your turn.”
Be aware of any judgment arising in your mind. Be aware that this judgement is about you-- not the person you are listening to. Let it go.
Do not interrupt.
Do not ask questions or direct the conversation. (Nodding and making affirmative sounds are okay.)
Understand that listening does not mean you approve or condone or endorse. You are simply holding space for another person’s voice to be heard.
No advice. Ever. Period.
When listening to someone reading their writing: You may keep SHORT notes repeating a specific word or phrase that moved you. You may share those with the writer—without explanation or preamble.In class we went through some brief introductions, and I explained my game plan:
Guided Meditation/Visualization, where I would ask them to get comfortable, close their eyes, and let me lead them through an exploration of the sensations in every part of their bodies.
Coloring the Body Scan, where I would ask them to color in a printed outline of a body shape in anyway that reflected what they found in the meditation they'd just done.
Writing Practice, where they would write without pause on prompts I would give them, as further exploration of their meditation.
Sharing/Listening, where they would share some of their writings with one another.
Of course, this was too ambitious for the hour we had to work within. And we spent a lot of time doing things I considered totally incidental to the work at hand ( ie, picking out crayolas). We ran out of time before more then one brave soul could share her writing at the end. After that several people were eager to talk about the experience -- something I would never have allowed in one of my writing classes, but here I figured what-the-hell --we are past time and maybe the more important thing is that they are sharing with one another, not exactly what form that sharing takes. (Although I still maintain that what happens from following the form of Writing Practice -- ie, Everyone Writes/Everyone Reads, and again, and again, and again-- gets down much deeper to the heart of matters and is that much more healing because of it.)
But, hey, it is a foot in the door. The women said they'd never done anything like it. They seemed to enjoy it and felt like they got something out of it. I said I would be happy to come back and do more. Anytime.
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