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?
Saturday, April 30, 2011
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.
Wednesday, April 20, 2011
Cancer Fair 3! (or Some Sequels Take Longer Than Others)
Q: Hey, Althea, remember when you went to the Breast Cancer Issues Conference in Portland last month? Who was your Favorite Speaker?
A: That would be Dr. Gene Hong, hands down! He was the acupuncturist in the panel discussion on treating metastatic disease in break out session #1.
He spoke like a human being talking to other human beings, referred to his power point briefly and as back up (vs treating it like a script as the other two panel members-- a radiologist and an oncologist did). He talked about his own journey from Internist to Acupuncturist (the turning point was pondering the "First, do no harm" part of the Hippocratic Oath) and about the Traditional Chinese Medicine belief in Three Pillars of Health: Eating, Sleeping and Pooping. Dr Hong said "If you come to see me, those are three of the things we will talk about, because if you can't do those three things you are not going to be alive very long."
I nearly stood up and cheered. (Perhaps you know the story of my beloved brother-in-law Roach whose surgery left him unable to do any of the above? His surgeon's response was, and I quote: I saved your life; those are just life-style issues.)
Dr Hong adds two more pillars to these Three Ancient Ones:
Exercise: Not an issue when Chinese Medicine was being formulated four thousand years ago, and most people spent a good chunk their days working in rice paddies in order to eat. The body needs to move to be healthy.
Happiness or Contentment: Dr Hong said, "We have to come to some understanding that most of us are about as happy as we decide to be."
We tend to think that our circumstances determine our level of happiness. This neglects the part our minds, our perceptions and our habitual conditioning plays. It makes happiness or unhappiness something that just befalls us and that we have no influence on. We need to question those assumptions if we want to find a way to make life with cancer worth living.
How wonderful to hear such wisdom and compassion at a conference like this! I wanted to tell Dr Hong that he was my new hero, but after the session he was mobbed with patients asking questions about treatment. I didn't want to interrupt just to throw flowers at his feet.
Q: You brought flowers?
A: No. That was just a way of expressing my admiration.
Q: Oh. Good. What else did you learn?
A: The session on Having Difficult Conversations was interesting. Anytime one is dealing with a terminal diagnosis like metastatic cancer, these "difficult" issues are going to arise as surely as a turd in the punch bowl: We are all going to face loss, and we are all going to die, some of us sooner than others.
This comes as a shock to most Americans. We don't have any living traditions to help us cope with death and dying in this culture. Our prevailing ethos is to act as if it will never happen. Which is why cancer patients can feel like such lonely outcasts, and others (loved ones, doctors, nurses) can feel like such failures when patients die. Most of us are left to figure out a way through these thorny questions of how and why we live and what choices we can make around dying on our own.
When they come up, and how frequently they come up, and how ready one is to deal with them at any particular point in time is a highly individual affair. There is a wide range of normal and no matter where you fall on the spectrum, what happens for you is perfectly normal and probably appropriate for you.
Things get more complicated as you bring others into your ever-shifting circles of thought. Your loved ones are likely to be taking their clues from you. They cannot read your mind. As your thoughts, feelings and moods shift, others will always be one step behind you-- still processing whatever you shared with them the last time you spoke. There is always going to be some lag time. I thought this was a brilliant insight, and one that could be helpful for patients and loved ones alike.
And there are good reasons your loved ones may not be on the same wave length as you. Everyone is going through a major life event -- you are just the lynch pin -- and everyone will process it in their own way. There are no rules, no right and wrong way to go about it.
We each must find our own way and do our best to be respectful of other people's way of coping-- even if we don't understand or agree with them. Being willing to stay in communication with loved ones, finding some way to keep in touch, helps fight the debilitating isolation that can come with a metastatic cancer diagnosis.
The most successful technique, turns out, is usually not The Big Talk. It is the conversation that comes up casually, in the car, over a cup of tea, or after a movie. Life is full of little openings. (As Leonard Cohen says, That's how the light gets in.) Being willing to speak when these openings present themselves is key.
Shakespeare would say, The willingness is all.
Q: You just had to rope Shakespeare into this discussion, didn't you?
A: Well, tradition is important.
A: That would be Dr. Gene Hong, hands down! He was the acupuncturist in the panel discussion on treating metastatic disease in break out session #1.
He spoke like a human being talking to other human beings, referred to his power point briefly and as back up (vs treating it like a script as the other two panel members-- a radiologist and an oncologist did). He talked about his own journey from Internist to Acupuncturist (the turning point was pondering the "First, do no harm" part of the Hippocratic Oath) and about the Traditional Chinese Medicine belief in Three Pillars of Health: Eating, Sleeping and Pooping. Dr Hong said "If you come to see me, those are three of the things we will talk about, because if you can't do those three things you are not going to be alive very long."
I nearly stood up and cheered. (Perhaps you know the story of my beloved brother-in-law Roach whose surgery left him unable to do any of the above? His surgeon's response was, and I quote: I saved your life; those are just life-style issues.)
Dr Hong adds two more pillars to these Three Ancient Ones:
Exercise: Not an issue when Chinese Medicine was being formulated four thousand years ago, and most people spent a good chunk their days working in rice paddies in order to eat. The body needs to move to be healthy.
Happiness or Contentment: Dr Hong said, "We have to come to some understanding that most of us are about as happy as we decide to be."
We tend to think that our circumstances determine our level of happiness. This neglects the part our minds, our perceptions and our habitual conditioning plays. It makes happiness or unhappiness something that just befalls us and that we have no influence on. We need to question those assumptions if we want to find a way to make life with cancer worth living.
How wonderful to hear such wisdom and compassion at a conference like this! I wanted to tell Dr Hong that he was my new hero, but after the session he was mobbed with patients asking questions about treatment. I didn't want to interrupt just to throw flowers at his feet.
Q: You brought flowers?
A: No. That was just a way of expressing my admiration.
Q: Oh. Good. What else did you learn?
A: The session on Having Difficult Conversations was interesting. Anytime one is dealing with a terminal diagnosis like metastatic cancer, these "difficult" issues are going to arise as surely as a turd in the punch bowl: We are all going to face loss, and we are all going to die, some of us sooner than others.
This comes as a shock to most Americans. We don't have any living traditions to help us cope with death and dying in this culture. Our prevailing ethos is to act as if it will never happen. Which is why cancer patients can feel like such lonely outcasts, and others (loved ones, doctors, nurses) can feel like such failures when patients die. Most of us are left to figure out a way through these thorny questions of how and why we live and what choices we can make around dying on our own.
When they come up, and how frequently they come up, and how ready one is to deal with them at any particular point in time is a highly individual affair. There is a wide range of normal and no matter where you fall on the spectrum, what happens for you is perfectly normal and probably appropriate for you.
Things get more complicated as you bring others into your ever-shifting circles of thought. Your loved ones are likely to be taking their clues from you. They cannot read your mind. As your thoughts, feelings and moods shift, others will always be one step behind you-- still processing whatever you shared with them the last time you spoke. There is always going to be some lag time. I thought this was a brilliant insight, and one that could be helpful for patients and loved ones alike.
And there are good reasons your loved ones may not be on the same wave length as you. Everyone is going through a major life event -- you are just the lynch pin -- and everyone will process it in their own way. There are no rules, no right and wrong way to go about it.
We each must find our own way and do our best to be respectful of other people's way of coping-- even if we don't understand or agree with them. Being willing to stay in communication with loved ones, finding some way to keep in touch, helps fight the debilitating isolation that can come with a metastatic cancer diagnosis.
The most successful technique, turns out, is usually not The Big Talk. It is the conversation that comes up casually, in the car, over a cup of tea, or after a movie. Life is full of little openings. (As Leonard Cohen says, That's how the light gets in.) Being willing to speak when these openings present themselves is key.
Shakespeare would say, The willingness is all.
Q: You just had to rope Shakespeare into this discussion, didn't you?
A: Well, tradition is important.
Tuesday, April 19, 2011
What is Freedom Beyond Conditions?
I've got a new hero! Thanks to Tricycle.com's latest email article entitled The Heartful Dodger.
I mean, com' on, you gotta love a dharma teacher named Vinny, am I right? Plus, look at the guy, he's like an urban buddha with a handlebar mustache and tats...
Vinny Ferraro is a teacher-trainer with the Mind Body Awareness Project in Oakland, California, nonprofit that uses mindfulness to give youth the tools to make better decisions and to consider more skillful options than violence, self-harm, drugs, and crime.
“All my work revolves around the same conversation: What is freedom beyond conditions? Beyond this school, this prison, this hood, whatever your conditions are... Any condition can be a vehicle for bondage—or freedom and awakening. And that’s fucking deep, man.
“The Buddha taught that freedom is going beyond conditions. For me, the people who have been through the harshest conditions—and survived—have the greatest potential to transform the madness of their lives. ..
"Thomas Merton said that prayer and love are learned when prayer becomes impossible and the heart has turned to stone. Know why? Because that’s where the action is, Jack.
“Look, my practice is simple. What if nothing is wrong? What if it all belongs—everything around you? Just see if you can approach every moment with kindness. Know what that does? That allows you to live in a kind world. And that slowly helps you deal with whatever comes up, when motherfuckers don’t act right.”
He pauses, cocks his head, and gives a grin.
“And y’all motherfuckers ain’t acting like I need you to act, most of the time.”
I'm in love, motherfuckers, pure mother-fuckin' buddha-love.
Sunday, April 17, 2011
Another Day
So last Tuesday I walked into Celilo Cancer Center about 20 minutes late (due to my own difficulty getting out my door in a timely fashion, plus major construction on the one and only road which everyone who wants to go to or from the Center must use). Suffice it to say sister Lori and I were both a little stressed upon our arrival.
I try to get a receptionists' attention. They are both busy.
A young woman pops out of the Chemo Room and says, Althena?
Althea? I counter.
Oh, I'm sorry, she says.
That's okay, I say, It's only my name...
Oh, I know, she says. It is only your whole identity I am messing up!
I leave it at that, because my point was actually that my name is NOT my identity, but she was not taking it that way plus I am feeling a little growly and I don't trust myself to explain with out digging us both in any deeper.
This awkward start might have served as a sign that I needed to slow down and open up. But it did not.
(Turns out this gal was a volunteer taking lunch orders for Infusion patients. I've never understood why you'd wanna eat hospital food if you did not have to-- or why you'd serve it to a room full of chemo patients who can be extremely sensitive to food smells. But hey, that's me. Some folks seem happy to slurp up the ol' split pea...)
When I get the receptionist's attention, I tell her I am running late, and I am here to do labs and see Nina, and I am not sure which they want me to do first.
Well, I'll just let them both know that you are here and we'll see comes out to get you first.
Labs wins the race and I follow them back to their area-- which is just inside the Chemo (or Infusion) Room. The north wall of the room has three bays or nooks, each separated from the others by a shallow wall but open to the larger room. There is a nurses station in the southwest quadrant and multiple lounge chairs for Infusion along the big glass windows facing east. The first bay as you enter the Chemo room is where they draw blood-- which is what is meant by "doing labs". Still with me? Good. SO.
I am motioned to a chair in the Lab nook. The woman (I would have called her a nurse, which I now know she is not-- she is a phlebotomist, ie, a person who draws blood) seems a bit flustered. The phone is ringing, she's asking me about some new orders (ie, tests to be done with my blood) which do not go into effect until next month. She answers the phone. I sort out my ipod while she deals with the call. When she turns her attention back to me, she asks again about my new orders, and if I am "hard stick." I acknowledge that I am and tell her that my preferred method is to plug in my ipod and look out the window while she does her thing. I do not stop everything and make her go eyeball to eyeball with me and I do not I give her my whole spiel.
(Oh! Maybe I haven't shared the story of My Whole Spiel with you out there in blog-land: The last couple of times my blood's been drawn, I've made a point of taking maybe 20 seconds to make eye contact with the entity on the other end of the needle-- person-to-person contact-- and saying out loud that I recognize that this is a difficult situation for both of us, that I know they are doing their best, and that closing my eyes or looking out the window, focusing on my breath with my ipod in my ears is just my way of coping-- it doesn't mean I am mad at them or upset about anything. I admit it can be a tiny bit awkward--I suspect because it's an unusual or unexpected exchange to have with a patient-- but it's made a big difference in the quality of my experience.)
So, you might think I would employ it now, yes? Uh, no. Somehow, I get the idea that she's already hip to the situation. Medical staff-- like the rest of us-- put a premium on appearing competent and on top of things -- after all you are trusting them with your health. It is part of their professional demeanor. Breaking through that with out seeming to question their competency can be tricky to maneuver. And let's face it, I am still feeling a bit flustered myself. So-- to be clear-- I do not take the time to fully connect with her and encourage her to take the time to connect with me.
When I emerge from my window-gazing, ipod-listening daze, she is slipping the needle out of my arm.
Whoa, wait, I say. I am supposed to get an IV! That's the whole deal-- I am a difficult stick, that is why I don't get my labs done ahead of time. I come here so they can draw my blood at the same time they put in the IV-- so I don't have to get stuck so many times. That's the whole point.
Oh, she says, I didn't know that. I'm sorry. The phone starts ringing again. You need a nurse to start an IV. I'll go find your nurse! And she is off. Enter phlebotomist #2, who answers the phone, then turns to me.
How are you?
I am not very happy right now.
What's wrong?
Phelbotomist #1 is back, super-apologetic, full of blame for herself. Gail, the nurse who usually takes me back to the doctor's exam room and takes my vital signs, arrives at the same moment, clipboard in hand. Everyone is looking at me and my unhappiness.
I am not crying and I am not yelling. But I am upset. I keep asking, What do I have to do to make sure this does not happen again?
It's not your fault, says phlebotomist #1. I was looking at the lab sheet. The IV would not be on your lab sheet. It's my fault.
It's not all your fault. There is so much going on in this little space-- it's kind of chaotic and full of distractions. You had to answer the phone, and---
She interrupts me ----I didn't answer the phone the second time!
Okay. Clearly she is not really hearing me, I am not trying to blame her, I am trying to say I can see how easily mistakes can happen in this environment. I can tell: She feels bad, she feels like it's all her fault, she failed, she is sorry. But no one offers an answer to my question. I do not know if they can even hear my question.
I know you don't want to hurt me, I know you didn't intend for this to happen. I just want to know if there is something I can do to make sure it does not happen again...
Gail suggests we head to the exam room now and come back to start my IV afterwards. I hug phlebotomist #1. I am still not sure that she gets that I do not mean to blame her.
(Which is not to say I hold no blame in my heart-- cause I do, I can feel it. I blame the whole system. I want to know how it works, who I need to talk to, what I need to say or do to make things better for all of us-- patients and staff alike--because this is hard on everybody. It ain't right-- and you know how I feel about things what ain't right! So, OK, yes, it is possible that my demeanor telegraphed my readiness to kick ass and take names--- I am a Hukari girl, after all...)
Gail leads me into an exam room where Lori is already waiting. Lori sees that I do not have an IV, and she sees my face. Maybe not in that order.
I had a bit of a meltdown, I tell her.
Gail apologizes again for what happened, and makes a joke about how my blood pressure is likely to be higher then usual: Do you want to take a couple of deep breaths first?
No, I grumble, I am not done being mad yet....
That breaks the tension a bit. While it is true-- my emotions are still running high-- the fact that I can recognize that I am CHOOSING to not let it go of something so unpleasant is funny even to me. At least a little bit.
After taking my vitals, Gail offers to sit down with me and explain how charting works. She shows me where someone needs to write on the bottom of a sheet of paper that I need an "IV with lab draw." These are the magic words, people! If they do not get written every time on the bottom of a piece of paper, we are all lost. But now I can proclaim: I need an IV with lab draw! At last it can be said! As long as I remember those magic words this particular snafu need never happen again.
Nina comes in. She's heard all about my incident. Apparently two patients came into the Chemo Room earlier that day with major medical issues that should have gone straight to ER. The patients came here because this is place and the people they know. Everything worked itself out, but it put the staff in the Chemo Room off-stride. Nina is not surprised that further chaos got lumped on top.
This story is yet another argument for bringing the practice of mindfulness into this kind of environment, is it not? It takes practice to let go and open up to a fresh perspective. It's as if we are always dragging our stinky old left overs around with us: I couldn't eat all this anger at the time, but I'll be damned if I am throwing it away! That's perfectly good righteous anger!
I think about how many hours of meditation practice I've put in over the last (gulp) twenty-five years. And I am only now beginning to be able to catch myself in the moment as some powerful emotion takes a grip on me. I certainly can't claim to do it consistently. But working with where ever I am in the moment, noticing where ever I am in the moment-- even just the baby-steps I've been able to make in that direction-- has enriched my life immeasurably. It works the soil so wisdom and compassion can take root.
My yoga teacher Meg calls this "developing the Witness Perspective": Being able to observe one's body, emotions, thoughts, actions and interactions precisely and without judgment. Sharon Salzberg speaks about it in her Online Retreat on The Five Hindrances at Tricycle.com this way:
I try to get a receptionists' attention. They are both busy.
A young woman pops out of the Chemo Room and says, Althena?
Althea? I counter.
Oh, I'm sorry, she says.
That's okay, I say, It's only my name...
Oh, I know, she says. It is only your whole identity I am messing up!
I leave it at that, because my point was actually that my name is NOT my identity, but she was not taking it that way plus I am feeling a little growly and I don't trust myself to explain with out digging us both in any deeper.
This awkward start might have served as a sign that I needed to slow down and open up. But it did not.
(Turns out this gal was a volunteer taking lunch orders for Infusion patients. I've never understood why you'd wanna eat hospital food if you did not have to-- or why you'd serve it to a room full of chemo patients who can be extremely sensitive to food smells. But hey, that's me. Some folks seem happy to slurp up the ol' split pea...)
When I get the receptionist's attention, I tell her I am running late, and I am here to do labs and see Nina, and I am not sure which they want me to do first.
Well, I'll just let them both know that you are here and we'll see comes out to get you first.
Labs wins the race and I follow them back to their area-- which is just inside the Chemo (or Infusion) Room. The north wall of the room has three bays or nooks, each separated from the others by a shallow wall but open to the larger room. There is a nurses station in the southwest quadrant and multiple lounge chairs for Infusion along the big glass windows facing east. The first bay as you enter the Chemo room is where they draw blood-- which is what is meant by "doing labs". Still with me? Good. SO.
I am motioned to a chair in the Lab nook. The woman (I would have called her a nurse, which I now know she is not-- she is a phlebotomist, ie, a person who draws blood) seems a bit flustered. The phone is ringing, she's asking me about some new orders (ie, tests to be done with my blood) which do not go into effect until next month. She answers the phone. I sort out my ipod while she deals with the call. When she turns her attention back to me, she asks again about my new orders, and if I am "hard stick." I acknowledge that I am and tell her that my preferred method is to plug in my ipod and look out the window while she does her thing. I do not stop everything and make her go eyeball to eyeball with me and I do not I give her my whole spiel.
(Oh! Maybe I haven't shared the story of My Whole Spiel with you out there in blog-land: The last couple of times my blood's been drawn, I've made a point of taking maybe 20 seconds to make eye contact with the entity on the other end of the needle-- person-to-person contact-- and saying out loud that I recognize that this is a difficult situation for both of us, that I know they are doing their best, and that closing my eyes or looking out the window, focusing on my breath with my ipod in my ears is just my way of coping-- it doesn't mean I am mad at them or upset about anything. I admit it can be a tiny bit awkward--I suspect because it's an unusual or unexpected exchange to have with a patient-- but it's made a big difference in the quality of my experience.)
So, you might think I would employ it now, yes? Uh, no. Somehow, I get the idea that she's already hip to the situation. Medical staff-- like the rest of us-- put a premium on appearing competent and on top of things -- after all you are trusting them with your health. It is part of their professional demeanor. Breaking through that with out seeming to question their competency can be tricky to maneuver. And let's face it, I am still feeling a bit flustered myself. So-- to be clear-- I do not take the time to fully connect with her and encourage her to take the time to connect with me.
When I emerge from my window-gazing, ipod-listening daze, she is slipping the needle out of my arm.
Whoa, wait, I say. I am supposed to get an IV! That's the whole deal-- I am a difficult stick, that is why I don't get my labs done ahead of time. I come here so they can draw my blood at the same time they put in the IV-- so I don't have to get stuck so many times. That's the whole point.
Oh, she says, I didn't know that. I'm sorry. The phone starts ringing again. You need a nurse to start an IV. I'll go find your nurse! And she is off. Enter phlebotomist #2, who answers the phone, then turns to me.
How are you?
I am not very happy right now.
What's wrong?
Phelbotomist #1 is back, super-apologetic, full of blame for herself. Gail, the nurse who usually takes me back to the doctor's exam room and takes my vital signs, arrives at the same moment, clipboard in hand. Everyone is looking at me and my unhappiness.
I am not crying and I am not yelling. But I am upset. I keep asking, What do I have to do to make sure this does not happen again?
It's not your fault, says phlebotomist #1. I was looking at the lab sheet. The IV would not be on your lab sheet. It's my fault.
It's not all your fault. There is so much going on in this little space-- it's kind of chaotic and full of distractions. You had to answer the phone, and---
She interrupts me ----I didn't answer the phone the second time!
Okay. Clearly she is not really hearing me, I am not trying to blame her, I am trying to say I can see how easily mistakes can happen in this environment. I can tell: She feels bad, she feels like it's all her fault, she failed, she is sorry. But no one offers an answer to my question. I do not know if they can even hear my question.
I know you don't want to hurt me, I know you didn't intend for this to happen. I just want to know if there is something I can do to make sure it does not happen again...
Gail suggests we head to the exam room now and come back to start my IV afterwards. I hug phlebotomist #1. I am still not sure that she gets that I do not mean to blame her.
(Which is not to say I hold no blame in my heart-- cause I do, I can feel it. I blame the whole system. I want to know how it works, who I need to talk to, what I need to say or do to make things better for all of us-- patients and staff alike--because this is hard on everybody. It ain't right-- and you know how I feel about things what ain't right! So, OK, yes, it is possible that my demeanor telegraphed my readiness to kick ass and take names--- I am a Hukari girl, after all...)
Gail leads me into an exam room where Lori is already waiting. Lori sees that I do not have an IV, and she sees my face. Maybe not in that order.
Gail apologizes again for what happened, and makes a joke about how my blood pressure is likely to be higher then usual: Do you want to take a couple of deep breaths first?
No, I grumble, I am not done being mad yet....
That breaks the tension a bit. While it is true-- my emotions are still running high-- the fact that I can recognize that I am CHOOSING to not let it go of something so unpleasant is funny even to me. At least a little bit.
After taking my vitals, Gail offers to sit down with me and explain how charting works. She shows me where someone needs to write on the bottom of a sheet of paper that I need an "IV with lab draw." These are the magic words, people! If they do not get written every time on the bottom of a piece of paper, we are all lost. But now I can proclaim: I need an IV with lab draw! At last it can be said! As long as I remember those magic words this particular snafu need never happen again.
Nina comes in. She's heard all about my incident. Apparently two patients came into the Chemo Room earlier that day with major medical issues that should have gone straight to ER. The patients came here because this is place and the people they know. Everything worked itself out, but it put the staff in the Chemo Room off-stride. Nina is not surprised that further chaos got lumped on top.
This story is yet another argument for bringing the practice of mindfulness into this kind of environment, is it not? It takes practice to let go and open up to a fresh perspective. It's as if we are always dragging our stinky old left overs around with us: I couldn't eat all this anger at the time, but I'll be damned if I am throwing it away! That's perfectly good righteous anger!
I think about how many hours of meditation practice I've put in over the last (gulp) twenty-five years. And I am only now beginning to be able to catch myself in the moment as some powerful emotion takes a grip on me. I certainly can't claim to do it consistently. But working with where ever I am in the moment, noticing where ever I am in the moment-- even just the baby-steps I've been able to make in that direction-- has enriched my life immeasurably. It works the soil so wisdom and compassion can take root.
My yoga teacher Meg calls this "developing the Witness Perspective": Being able to observe one's body, emotions, thoughts, actions and interactions precisely and without judgment. Sharon Salzberg speaks about it in her Online Retreat on The Five Hindrances at Tricycle.com this way:
The Five Hindrances are obstacles that arise in our meditation practice—and in our lives—that throw us into confusion. They are: Desire (also known as Attachment), Aversion (aka Anger or Fear), Laziness, Restlessness, and Doubt. Each of them has its own way of knocking us off the path of practice, and yet, dealing with the Hindrances is our practice. If we had no negative emotional states to confront, we wouldn't be on the spiritual path at all!
Sharon says that the fact that these "hinderances" (we could call them "mental states" or "energies") arise is not the problem. They are a perfectly normal, natural consequence of being alive. It is our or normal or habitual relationship with them that is the problem—we get caught up, overwhelmed, maybe even defined by them.
“The mind is naturally radiant and pure. The mind is shining. It is because of visiting forces that we suffer.”
These states are not us, they are visitors. Can we greet these visitors with wisdom, balance, mindfulness, compassion? Ah, there's the rub, ladies and gentlemen, there's the rub.
Thursday, April 14, 2011
Got Side Effects?
Ummmm.... Not to beat a dead horse or anything. Maybe Dr T didn't see this study from Ninth Annual American Association for Cancer Research (AACR) International Conference on Frontiers in Cancer Prevention Research: Abstract B10. Presented November 11, 2010.Aromatase Inhibitor Adverse Effects Study focuses on "new onset" of symptoms
Aromatase inhibitors (or AIs) such as Arimidex, Aromasin and Femara are associated with the new onset of a wide array of symptoms according to a new study from the Prevention and Research Center at Mercy Medical Center in Baltimore, Maryland.
Randomized controlled trials of AIs have firmly established that musculoskeletal symptoms are related to treatment. But what about other symptoms that many women on AIs seem to experience?
The symptoms that are apparently associated with AIs are legion.
The study found that women taking AIs were:
- 5 times more likely to report having hot flashes, breast sensitivity, and chest pain than healthy women
- 4 times more likely to report night sweats, cold sweats, and hair loss
- about 3 times more likely to report leg cramps, weight gain, sleep disturbance, tendency to take naps, and forgetfulness.
The study was funded by Susan G. Komen for the Cure, AstraZeneca, and the National Cancer Institute. The researchers have disclosed no relevant financial relationships. http://www.medscape.com/viewarticle/732366 ... Uh, what were you saying, Doc?
Monday, April 11, 2011
Bump
I haven't finished Part 3 on the Komen Breast Cancer Issues Conference
nearly a month ago. Or told you about my incredible weekend in Seattle,
April 1-4th, at the Edible Book Festival and Freehold's Engaged Theatre project
at the Washington Correction Center for Women. They were both
absolutely remarkable, inspiring events, the result of two remarkable, inspiring
women's quest to share their unique visions with the community.
Kudos to Janet Fryberger and to Robin Lynn Smith.
What a wild, wonderful ride through the breadth and depth
of the creative impulse. If it weren't totally lame
What a wild, wonderful ride through the breadth and depth
of the creative impulse. If it weren't totally lame
to say you guys both totally rock, that is totally what I would say!
And I totally mean it from the bottom of my lumpy lil' heart.
Now. About that Bump... Well, maybe it is just a hiccup.
The facts are these: I am not feeling as terrific as I have been. I've become aware of a bit of a hitch in my git-a-long. Mostly this: I get sore and achey in my joints--primarily my right knee, where I've had some trauma in the past, and my neck and shoulders. It gets better with yoga, acupuncture, and hot baths, but it keeps coming back. It is becoming chronic and that is new. Plus I have days when I just hit a wall in terms of energy. I'll be going great guns (well, at least for me, in recent times) and then run out of gas-- BAM!-- nap-time. And I've had a bit of a sore throat off and on which has made me wonder if this could be some low-grade bug. Plus (as I may have complained before) as soon as I stopped losing weight-- and I mean the nano-second-- I started gaining weight. Like crazy. I kinda assumed it was one of those blessings from the Gordon gene-pool, but... maybe not.
I made an appointment to talk to my Oncology Nurse Practitioner. She suspects these might all be side effects from Arirmidex, but thought my oncologist might another bone scan (my last one was in Oct) to rule out further metastasis. My naturopath in Seattle also suspects Arimidex as the culprit. (She added fish oil capsules and something called Wobenzyme to my list of daily supplements.) I spoke to Dr T (oncologist) over the phone, and he maintains that these symptoms are NOT common side effects of Arimidex.
Well, they might not be statistically common (i.e., occurring in more then 10% of patients) but they ARE listed as side effects online (courtesy of the National Institute for Health)--- even on the website of the company who makes the drug. And as any patient or Dr should know, statistics mean nothing when it comes to your own experience: If you are one of the 10% experiencing side effects, being told they are statistically insignificant does nothing but make you feel-- uh, I guess a good word might be-- insignificant yourself.
So: Dr T says we stay the course with Arimidex. It does have the best record for long-term benefit with limited side effects of any aromatase inhibitor. The naturopath hopes we can address the side effects with further supplements. Acupuncture can help with joint pain and tiredness-- but I need to commit to one or two weekly sessions for at least a month to get on top of it. The Nurse Practitioner thinks I might want to consider switching to a new hormone drug, maybe one with some steroid component to combat the side effects of having every drop of estrogen squeezed out of my system. I hate the crap shoot of trying out a new drug-- especially when I had high hopes of staying with the current routine (minus the new side effects, of course) for up to 20 years.
Either option-- further bone metastasis or unforgiving and unrelenting side effects from current drug-- is not good news. And that bums me out. I had no idea how normal feeling good had become for me until I thought it might be going away again. It scares me. I have tried not to take my recent streak of health for granted, but the idea of losing it, that was a real gut check. As if I'd made some bargain that I was willing to live with Stage Four cancer as long as it didn't actually physically hurt or limit me too much. Of course that was a deal that could not be kept. And who did I think was on the other end of that agreement anyway? Cancer does not keep bargains. And I do not believe one can make a deal with the universe.
I hate, hate, hate the notion that "cancer is a teacher," not because it isn't true (I think it is true, actually) but because it is so easily co-opted. It becomes another way to blame the victim--as if, well, we didn't need to learn this lesson, but clearly you did, and if you would just learn it already, you would be whole again, just like us... which belies the larger truth that we are all mortal, our lives are all temporary, and if there is a universal lesson in a cancer diagnosis, that might be it in a nutshell.
I wasn't really thinking of it that way, anyway. I was just trying to do my best with what came my way day by day. But anything becomes routine after a while. And when any routine changes unpleasantly, we usually react like it is an affront. It is not personal. It is just what is. But what is can be hard to accept. It can be hard to be willing to accept. Another new reality. Let go or be dragged. I can forgive myself for being dragged a bit by this one. For stumbling to find my feet again and say yes to this life --whatever it entails.
So there you have it. The latest bump in the road. It can make me sad. It certainly shakes me up: Oh, right, I have CANCER, I nearly forgot... But here's what practice has taught me: The obstacle is the path. The only way around it is through it. Step by step. If I can keep my mind in the present moment, in what I can do here and now, there is always enough courage for the next breath. You've got to let the one after that take care of itself. Easier said than done, my friends. Keep me in your prayers...
May all beings know happiness and the root of happiness.
May they be free from suffering and the root of suffering.
May they never be separated from the supreme joy that is beyond all sorrow.
May the abide in equanimity free from attachment and aversion.
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