Me and My Lung-Bag

In Our Last Episode, 9/15/10:  

Our heroine goes for a thoracentesis to drain the fluid that cancer-clogged lymph nodes have caused to collect in the pleura, ie, sac, around her left lung. After draining 2-plus liters of what looks like slightly stale amber ale, a One-in-a-Hundred-Chance Boo-Boo results in the plastic drain tube puncturing a tiny hole in the lung itself...

This Week: She checks in with her oncologist. Was it all worth it? Uh...

I wish I had better news.

The fluid is back in my left pleura-- as much if not more then they took out on the 15th. Damn. Dr Taylor assured me (more than once) that this is NOT an indication that the meds aren't working-- it is too early in the game to be able to deduce that. Just because the hormone has not reversed this effect of the cancer YET doesn't mean that it won't or can't do that in the future.

In the meantime, they need to get the fluid outta my lung-bag. Again. I am decidedly and understandably NOT interested in doing another thoracentesis, which is fine with Dr T-- that is not what he would recommend anyway. Given how much and how quickly this fluid has built up, he thinks we have two options-- both involving day surgery that would put a tube in my chest. After that I have two choices:

Option 1: Stay in the hospital for maybe 5 days while they pump/drain/suck the fluid outta me, and puff some talc in between my lung and the sac to encourage them to stick together, eliminating the space where the fluid currently collects. (Not sure where it goes, but I didn't think to ask that.) OH-- and if that doesn't work, they'd have to try Option 2 anyway...

Dr T agrees that Option 2 is the better choice: They put in a slightly smaller tube which I can drain myself (with the help of a Home Health Visiting Nurse. or any other interested party who could be easily trained by the same) every ?? Uh, once in a while??

This could go on for weeks (or months) as needed until (we hope) the fluid stops collecting. Which, as I said, Dr T thinks it SHOULD happen if/when the hormone therapy has time to do it's fluid-build-up-stopping job. The biggest risk here is infection, but it is relatively small.... OH-- and sometimes it's painful when you get near the end of the draining. (Copy that!)

Yeah. I don't like it either. I don't like procedures in general, as you all know, and I don't like to see them stacking up one on top of the other like this.

But the alternatives aren't pretty. If I just leave this be, eventually some equilibrium will be struck between the amount of fluid my pleura can contain and the amount of room left for air in my lung-- but that leaves me feeling kinda shitty all the time and could prevent my lung from ever expanding back to it's full capacity if/when the fluid were to stop collecting. Or I could do chemo to in hopes of blasting through the cancer-clotted lymph nodes-- but that has less promise for a long-term positive outcome then hormone therapy-- and is highly toxic in the short term.

Decisions, decisions. I think I'll take the marble fudge, I mean the fuckin' chest tube at home drain kit.

Momma always said, "This too shall pass..."

Cue Music. Cut to Commercial... And we're out!

Resistance and Loss

"Resistance is futile,"' my yoga teacher says to me.

She has to say it a lot. Because, as I admitted to her yesterday, I am a connoisseur of resistance. It's many moods, flavors, colors, textures, the many subtle nuances that unfold themselves to those of us who know it well. Believe me, those oenophiles have nothing on me...

Lately my flavor du jour has been the kind of big, broad-stroke, child-like resistance that I have recently had the opportunity to observe in an actual, living 6-year-old child; the kind of resistance that reminds me of the famous exchange Marlon Brando's character had in a movie (The Wild One):

"What're you rebelling against, Johnny?"

"Whaddya got?"

Exactly. Whatever you've got, I'm against it. It is common for this to be my first response to most things, as I've discovered from years of careful observation of my closely guarded private thoughts (aka meditation). I remember a meditation instructor telling me that the irritation that arose in me as resistance to certain rituals that we followed day after day after day in a month-long meditation retreat was "an intelligent response." I don't think she was complementing me. She was just commenting on our human tendency to react to the same-old same-old over and over again. Just noticing. That's what is intelligent in such a response.

Recently my resistant reaction is totally outsized to the situation. This also reminds me of the 6-year-old I had under close observation. I object so strenuously, and become so wedded to my objection that it seems impossible to give it up--even after it is clear to everyone, including, finally, me, that my objection has long since become obsolete. The only reason we can't move on is that my inner 6-year-old is still screaming NOOOOO!

Shit. Now what do I do? I can't back down, damnit. And there I am stuck and stranded in my own resistance, "hoist by my own petard," as my mother would say. (Yeah, she could quote Shakespeare, too.)

In examining our shared experience I asked myself, what does the 6-year-old get by saying no, even beyond the point where no is what he really wants? The answer, of course, is control. He gets to say no, therefore he gets to be in charge of his experience. Intelligent response, yes? And as I've been telling acting students for years, saying no only means you get to stay right where you are. Everything interesting that will ever happen to you (onstage, certainly, and maybe in life) comes from summoning the courage to say yes. Yes to whatever lands on your door step. Yes means you are willing to enter into an improvistional relationship with the universe.

Because the real grown-up truth is that we are not in control of nearly as much of our lives as we like to think. And our desire to control-- what happens to us, what other people think, or say, or do, the situations we find ourselves in-- well, it contributes to our suffering. We cannot control what happens to us; We can control how we respond to what happens to us. At least, ideally, we can...

So what am I so desirous to control right now? Oh, lots of things. But let's take the one that came up for me in yoga: Loss.

We all experience loss all the time-- big losses and little losses. Lots of people get sad this time of year about the loss of summer. (Even if we have every reason to think we will experience summer again next year.) We lose things all the time, regardless of our desire to hold on to them. Heck, I regret the vegetables I throw in the compost: But I wanted that avocado! We bump up against impermanence everyday, and often we just shrug it off: Things Change.

But some losses can really shake us, really wake us up. When we lose a loved one, a friend, a dream we held dear, when we lose something we've come to assume as part of our identity-- a job, a spouse, a home, an ability or aspiration. Who am I without this part of me? How do I let this go?

My experience with this cancer recurrence feels like something has snuck up on me and started taking parts of me away that I did not know I would be saying good-bye to-- or at least not this soon. (If we are ready to say good-bye, then perhaps we aren't losing something so much as letting it go. Which I think is a different although possibly related experience, but we can debate that another time.) But coming to terms with a disease which will likely kill me-- unless a bus gets there first or something, as could happen, let's hope not, to any one of us--coming to terms with the losses that start to tally up even this early in such a journey can shake me to my very core.

Something as simple as a forward fold -- you know, you just stand with your feet hip-width apart, and bend over letting your arms and head reach towards the floor-- an utterly simple and, historically, an utterly satisfying position for me. I can't do it right now. What was so right feels all wrong. I am too "sloshy" (see earlier post for explanation), it's too challenging to breathe, it is just too fucking uncomfortable. And to lose something so simple and so comforting-- something so familiar that it never occurred to me I could lose it-- was devastating. I wept like my dog died. And you know how I feel about my dog...

So, I am left to ponder the correlation between resistance and loss. Does the size of the resistance equal the size of the loss? That seems both too simple and too knowing. And gives too much power or credence to resistance, which is, after all, as Meg has been telling me for three years now, futile. Acknowledge the resistance and move forward anyway. Forward into loss? Yes. What else were you born for? Forward into whatever it is that happens next.

Practice Like Your Hair is on Fire, or Why I Want to Do a Three Month Meditation Retreat in Nova Scotia

I just sent off my application for the Winter Yarne being taught by Pema Chodron at Gampo Abbey, January-March 2011. Here's my essay:

My first encounter with breast cancer was in 1997. I was not yet forty years old. I addressed it with surgery, naturopathy, and Tradition Chinese Medicine, including Tai Chi. I’d been through Shambhala Training nearly ten years earlier, and had done a dathun at Gampo Abbey in 1991. Now, I took refuge vows. I did a three-week retreat at a mountain cabin with two “hand maidens,” as we called my friends. I meditated under the same pine tree every day. I saw this episode as an invitation—or maybe a demand—to decide for myself how I thought life—both with a big “L” and a little “l”- worked, and how I wanted to work with it.

When I had a local recurrence in 2004, a naturopathic specialist told me that if I would ever consider doing chemotherapy, she would recommend I do so now. I did. I also had more surgery, radiation, and hormone therapy. At this time I was living with and caring for my aging father in the small orchard community where I’d grown up. My friends from the city took turns coming to stay with and look after us both. I learned a lot about giving up control.

Breast cancer made a dramatic reappearance in my life this summer. It had already been a hellish year: I traveled to take what seemed like a dream job that turned into a nightmare: I couldn’t find a place to live, negotiating the college computer system I relied on was a daily battle, my students hated me. My dog got cancer. Legal battles over my father’s orchard became increasingly bitter. Dear friends were disappointed in me. I was disappointed with myself. I returned to my now solitary house in the middle of winter and watched the surrounding pear trees ripped out by their roots, sick and dispirited. I fell into battle with my old foe, depression.

My one thread of sanity through all this was the yoga practice I started with Meg Becker in October of 2007. I’d been meeting with her regularly one-on-one for two-hour sessions, one to three times a week. Through my work with her, I had been coming into a more fully embodied understanding of many of the ideas I recognized from my years both on the cushion and reading the work of Chogyam Trungpa, Pema Chodron, Jiko Beck and Thich Nhat Hahn. My practice became not to resist my depression, but to develop compassion and curiosity about it, work with it in whatever way I could. Some days I was better at it than others.

“Notice the unkind mind,” Meg said to me, over and over, week after week. How unkind my mind could be was a revelation. It is one thing to contemplate compassion, quite another to do the heavy lifting required to actually apply it.

Cut to this July: When I was diagnosed with a pericardial effusion—a build up of fluid in the sac around my heart—and told it could be the result of breast cancer metastasis—all I could feel was NO. I call it the Big No. I did not want to go to the ER. I did not want to see a thoracic surgeon in the city, right away, now, tonight. I did not want any of it. I did not have it in me to face another health crisis. I’d been to this rodeo --twice already-- I knew what it took, physically, psychically—and I knew I just did not have it in me.

Coming out of the hospital days later, I felt like my spirit was a tiny kite tied to a huge hunk of dying meat. I did not even smell like a human being. I hated every thing about my existence. I wished that I had crawled under the porch like our old farm dogs did when they knew their time was up. That seemed to hold more dignity, more integrity than my current situation.

Meg says I was born a feisty spirit; I know that I have always been uncompromisingly truthful about my experience. (To my detriment, no doubt, at times—certainly to the discomfort of others.) Still, it is one of the tenets that drew me to Buddhism, the need to rely on one’s own experience. I will not, cannot fake a yes when all I’ve got is a No. So, now what? What do I do with this Big No?

I did not have an answer to that. I had to live with no answer. I knew that saying No to life, saying No to my experience, would not really stop or change anything. It was childish. But it was my deep-down honest gut response. It would not budge. It sat on my heart like a stone. It was ugly, it was sad, it was nasty—it was NOT spiritual in any sense of the word that I could understand. It offered me nothing. But once I could approach it with some gentleness instead of fear, distrust, disgust, contempt—once I could say even the smallest yes to my Big No, it started to shift. I did not know that would happen. I have to call it grace. I did it not out of any sense of spiritual wisdom—I did it because there was nothing else I could do.

I have always said that I am being dragged kicking and screaming towards enlightenment. My experiences on the cushion, in my studies, in my life keep pulling me forward and I don’t want to dig my heels in any more. I want to spend three months at Gampo Abbey because I want to get even closer to my Big No, and have even fewer distractions from it. It still scares me. I am not free from its grip. But I have tasted what that kind of freedom might be like. I think of it as a bigger container, a more spacious experience of the world. And if I am to be of service to myself or anyone else, I need to invest more time and attention in developing my tiny yes. Now is the time for me to practice as if my hair were on fire. This is what I hope the Yarne will help me do.

I don't know when I find out if they will offer me a spot. The applications are due by Nov 1st, and I sent mine off today. So. My part is done.

The Four Limitless Ones

At the three-month winter retreat (called a Yarne) at Gampo Abbey in Nova Scotia, Pema Chodron will be teaching on "The Four Limitless Ones." She describes the four qualities this way:

May all beings enjoy happiness and the root of happiness.
This first line refers to maitri or loving-kindness.

May we be free from suffering and the root of suffering.
And this second line refers to compassion.

May we never be separated from the great happiness devoid of suffering.
This refers to joy.

May we dwell in the great equanimity, free from passion, aggression and prejudice.
This refers to equanimity.

She goes on to say:

"... each of us has these qualities already, but possibly in a rather limited amount. They're called The Limitless Ones based on the premise that we start with the amount we have, no matter how limited it is, and we begin to nurture what we have, and then it will expand by itself until it's actually limitless, beyond limits."

I found this online from a talk Pema Chodron gave in Berkley. You can read more here. And if you are curious about what a Yarne is, or how it works, or you want to find out more about Gampo Abbey you can click here.

Sometimes It Sucks

Okay, well the only point in really doing this is to speak the truth of my experience. And the truth is sometimes it sucks. Feel free to skip to the end of this post unless you want the shitty details. No hard feelings-- there are many, many times when I would fast forward to the other side of this particular experience if I could, and those are the times I am about to possibly "overshare" with you.

Here's the thing: Not only are there days when I feel like shit, ie, tired, overwhelmed, pissed off and sad-- along with strange, hard to isolate or describe physical complaints like "sloshiness", ie, the feeling that there is extra liquid sloshing around in my abdomen--a most disconcerting and uncomfortable sensation-- but there are days when even the thought of trying to tell another human being what it feels like to be me under these circumstances seems an insurmountable obstacle. Why would I try? How is that helpful-- to me or to anyone else?

The answer is, of course, that being able to share with other human beings makes us feel less alone. Even just putting words to our experience can help: 'The worst is not, So long as we can say, 'This is the worst'. ' (That's Shakespeare, yo, one of my top all-time go-to guys on the power of language.)

But sometimes I can't do that. It is just too much, language fails. And that makes me even sadder. And adds even more to my sense of isolation. Sometimes it sucks to be me, to have cancer, to have to navigate the tricky landscapes of health care, finances, relationships, and just unloading the fucking dishwasher when bending over makes me feel like shit. Acknowledging all this can make me feel like a big whiner. Which can really start the Ferris wheel of hatred spinning.

"Beware the unkind mind," my yoga teacher says.

Yes. But. How do you stop this Ferris wheel? Sometimes I feel like a cartoon character who falls through one awning after another, down, down, down the rabbit hole (to mix my metaphors shamelessly), one reality after another giving way beneath me. And I am supposed to embrace them all, as they shift, with equanimity, with grace, with open arms.

Well, "suppose" is a terrible choice of words... It implies "should", which anyone who's picked up a self-help book in the past 50 years knows is NOT helpful. But it is the language that springs to mind to talk about how I would "rather be" vs. how I am. But embracing how I am-- shittiness, suckiness, sadness and all-- is the only way out of this rabbit hole. And that kind of compassion takes all kind of grown-up-ness that I can barely muster on my good days.

Facing what I find unbearable-- in myself, in my life-- with tolerance, kindness, gentleness is the only way anything moves in this nasty little equation. It is the variable. And somedays I cannot find it. Other days, just being willing to try to find words for the experience helps. And that is another reason to commit to this blog, to encourage myself to try to find the words, hoping that will lead me to find compassion.

I'm Still Here...

It's been 68 days since breast cancer made a dramatic reappearance in my life. I've decided to write about it for two reasons: One, reading and writing has always been the way I wrap my head around my experiences, and when I ran smack into this one I longed to read something some previous traveler may have left as a kind of guidepost. It helps to know others have gone before you, it makes the terrain less lonely. And two, I want to give my friends and family a place to get easily updated on whatever the news is in my little corner of the universe.

But that's it for now. Starting is hard work.

"May all beings be free of suffering and the root of suffering."