Cancer Chronicles

To read the Cancer Chronicles, Part 1-99, CLICK HERE.
To read the most recent post, CLICK HERE.

Part 100:  Today is our 100th Cancer Chronicle. Lots of words and photos behind us. But more than that, it’s been a process and a celebration and a place to notice and grieve and tell the truth. For all of us.

And as I look back on these Chronicles and what cancer brought to my life, I see that the main thing is noticing how I turned against myself and aligned with what I call suffering. The negative voices, the pusher, the one who believes I’ve never done nor will I ever be enough. Having had cancer brought what was always there, what always needed my attention to a point. It said, “Hey. Maybe the cancer isn’t because you have been so mean to yourself, but you might as well use having cancer as a chance to look at how, when and why you do that…and to stop.

Stopping any pattern is not just a matter of saying STOP. Because the pattern doesn’t manifest itself full blown. In this particular case, it manifested itself in a sinking feeling in my belly, then my chest, then a physical sensation that there was no ground beneath me, and that I was like Pigpen but instead of walking around in a cloud of dirt, I walked around in a cloud of shame and I don’t-deserve-to-be-here’s.

Catching what is more familiar to me than even my own name—this pattern—takes longing and commitment and the willingness to start again and again.

It takes lack of judgment—really? this again?
It takes lack of projecting into the future—am I going to be dealing with this forever? Gimme a break.
It takes understanding that it’s not anyone else’s fault. This is mine. Up to me to deal with.
And it takes forgiving myself for deciding that I wasn’t worth being alive for.

And then, it takes turning to myself. And giving my heart back to myself after having given it away for years to anyone who looked like they would love or absolve or fill me.

Since the cancer diagnosis, this unwillingness to “greet the stranger who is myself” has changed. There has been a softening, an understanding that this is a practice. And there has been such freedom and ease.

This is the photograph we started the Chronicles with. The altar that created itself from friends who sent cards and well wishes. It’s been a challenging, ground-breaking two years.

I will continue to write these but now, with Number 101, we will call them The Cancer Chronicles (and Beyond). Let’s see what the beyond part reveals.

part1

Part 101:  I went to a few post-breast cancer exams the other day and heard from my gynecologist that she thought the surgeon who performed the lumpectomy botched the surgery. She didn’t use the words messed up but she did say that my breast shouldn’t look the way it does now —folded and gathered around scars — nor should I be in the kind of ongoing pain as I am, every day. The oncologist also said this, as well as the radiation doctor awhile back. He took his first look at my breast and said, "Oh wow. It should not look like this, even six weeks out. Something is amiss.” Apparently, the surgeon — if in fact it was she and not her resident who made the incision/excision — went in at an unusual angle. I want to call it the wrong angle, but wrong doesn’t apply here because it’s what she did, and I’m guessing she thought it was the right angle. I made an appointment with her to discuss this, to ask if her resident did the surgery, to find out what, beside more surgery which three doctors have now recommended, I can do.

I wasn’t going to talk to her about this, since it’s already done but then I remembered that after our good friend and financial advisor embezzled half our money a few years before we invested with Bernie Madoff (who as you know embezzled the rest) was arrested and put on trial, I didn’t show up at the trial. I didn’t give myself the chance to look at his face, to tell him about the effect that his actions had on our lives. The reason I gave myself was that he had already stolen two years of thoughts and feelings, of anger and betrayal, and I didn’t want to give him one more second. But as the years passed, I realized that it would have been giving to myself not to him. That I would have been showing up for myself, to speak the truth, and that his reaction was immaterial. So I decided this time, to speak to the surgeon, tell her what it’s been like and, if nothing else, prevent her from doing it again with another woman.

But in the meantime, here I sit. In ongoing discomfort, sometimes intense pain, sometimes minimal pain, but always a degree of nagging discomfort. And even after I decide what I will do about it, what actions, if any (besides PT, breathing, exercises, stretches, lymphatic drainage, etc.) to take, there is my mind to work with. My heart. What there is always to deal with: what is. The way it already is.

One of the first things that came up — I wasn’t proud of this — was “I’m a victim of a surgeon who messed up. Poor me.” Or, as my good friend Rebecca said, “What’s her address? I’m going to go over there and hurt her for hurting you…” after which we both laughed. Yep, the first line of defense: how could this happen? Why me? And how can I take revenge? But as the days have passed, I’ve settled into acceptance and not resisting what happened. Not fighting with it or myself. Not making myself wrong for choosing that surgeon and not the other one. Not making the surgeon wrong. Yes, I will do what I can but at some point, what matters most is how I live with what I’ve been given because it is not the pain but the meaning I give to it, what I say to myself, how I fight it or accept it — which determines the peace I am in.

Over and over, I keep being reminded that I’m not upset for the reason I think I am upset. That the cause of the inner uproar is not out there. It is a lesson, if you want to call it that, that keeps waving at me. Honey, it says, even when you weren’t in pain, you were in pain. Your mind is where the war begins and ends. What if this pain was a way to remind you of your humanness? To come back to your body and be tender with it? Let it be so.

Part 102:  I’ve been thinking about women’s friendships…(this photo is of my step-sister who became my friend years back).

I wrote awhile back about my best friend who ended our relationship the day I returned from radiation and how, in many ways, it forced me to turn toward myself and look at the kind of power I’d been giving to her.

I know that most of us, me included, wax rhapsodic about our friends, how they listen, how they understand, how different they are from relationships with men. But as with any relationship, there is also a shadow side, an unspoken part that we often push away — and that’s what I’d like to hear from you about today.
Do you feel competitive with your friends?

Do you sense them being competitive with you?
What about the friends who have left?
Did you understand what happened?
Do you idealize your friends and put yourself down in the process?

What do you know about your friendships with women that you’d prefer not to know?

Part 103:  A few years ago, I read a New Age-y article that said that cancer and other diseases were a result of turning against oneself. I was thinking of that this morning as I get ready to go for the second mammogram since the lumpectomy. And I was thinking that regardless of whether there is a connection between cancer and turning against oneself (and by the way, I think statements like that evoke blame and misery as if there is a perfect state of being on your own side and without any kind of body issue at all. There isn’t).

But this post isn’t about that statement or making people who say things like that wrong. This post is about the subtle and not so subtle act of turning against ourselves. Myself.

I spent a lifetime turning against myself—and I acted that out with food. I starved, I stuffed, I purged. I felt as if I deserved to be punished again and again and I did that by what I ate and didn’t eat. This morning I was remembering my anorexic days and how I fasted on water for ten days at every change of the season. I was remembering that I couldn’t get out of bed after five days but I continued until the end of the 10th day and then, a week or two later, I binged on donuts and granola and pumpkin cookies until I was so sick I couldn’t move. But somehow, somehow, all of that felt deserving. And if you asked me why, I wouldn’t have been able to tell you. I would have said that food was my problem and I needed to find a way to stop starving and stuffing. I would have said that if only I could get the food problem fixed, I would be fixed.

Forty years later—now—I know that through food, I was acting out “being against myself.” I grew up with parents who weren’t interested in their children. Aside from the ongoing physical and sexual abuse, if there is even a way to say “aside from the abuse,” the main message I received was that my existence didn’t matter. That I was damaged, wrong, not enough. It was a logical conclusion. It was unavoidable.

But now—now—my father is dead, my mother is 93 years old and we have come a long way to healing our relationship. Now when I turn against myself by criticizing myself, it has nothing to do with my father or mother. It has to do with my willingness to go along with beliefs that were never true. My existence mattered. I was not damaged. I was not wrong. But it takes vigilance to watch the machinery of old beliefs getting wound up. It takes being willing to say I’m sorry, I love you, to the girl I abandoned sixty-five years ago. It takes a commitment to stop self-abandoning—and to come back to what is true now.

There is light here. There is love here. There is tenderness here and the most painful part of what happened in childhood was not that my parents left, but that I left myself. And if I do nothing else for the rest of my life but return and return and return, that is cause for celebration.

Part 104:  When people used to ask me how I was doing, I’d either tell them what was wrong or, if I happened to be on the happy side, I’d search for the ways I wasn’t happy. I didn’t want to let them know that I was feeling good or content or just right. What if they were suffering? What if their beloved dog had just died? What if they’d gotten three hours of sleep for the last few nights?

This also extended to food and weight (because every way you live, everything you believe is also reflected in your relationship with food).

 

Where did this need to stay in The Suffering Club begin?

Pretty much where everything begins: in beliefs I took on as a child, in associations I made with happiness, in what I interpreted I needed to do to be loved. That’s how it goes. That’s how we form what the brain scientists call neural pathways in our brains. Happiness equals being unloved. Unhappiness equals being part of the tribe and therefore, safety.

It’s good to question these beliefs (in fact, it’s always good to question beliefs because most of the time you’re acting them out without knowing they stem from a long-held belief). Which is what we did at our recent retreat: We spent an afternoon on joy and what keeps us from it and the results were staggering (and not surprising at all, given our herstories).

Here is what some people said:
"If I allow myself to experience joy, people will think I’m not deep and that I don’t feel the incredible challenges we are all living through now."
"If I allow myself to feel joy, I’ll be all alone."
"Feeling joy will get me in trouble. Better to be unhappy and not stand out."
"If I allow myself to experience joy, the other members of my family won’t like it. Especially my depressed mother."
"I need to cut the amount of joy I feel in two so that I don’t threaten anyone. (Most people are pretty miserable)."

Beliefs are like walls. Every time I come up against a belief, even when I’m not aware of it, I get an uh-oh feeling. My stomach feels a little queasy. I think I need to turn around and go the other way immediately, despite not being fully cognizant of what that means. So, as we enter this insane lit-up family-filled crazy food-everywhere season (I’ll write more about the food part soon), take a minute or ten to ask yourself what your beliefs are about joy and what you think will happen if you let yourself feel a simple ordinary extraordinary joy in what’s here already. Not joy because you did something, achieved something, but joy because the sun came up. The sky is powder blue. You’re alive (and the 350,000 people who passed on yesterday are not). Sing it out loud. And if that sounds like too much because you’re cranky, okay then. Take joy in the fact that you can feel enough to be cranky.

What do you know about your friendships with women that you’d prefer not to know?

 

 

 

 

Part 105: My mother has been my inspiration when it comes to fashion and even at 93, we talk clothes and shoes and hair (always hair). So when a friend sent me a pair of Doc Martens, I tried them on and sent the picture to my mother. (The shoes made me look like Granny-Mae-on-The-Beverly-Hillbillies-Wears-A-Boat.) When she saw the photo, my mother called me and said “You’re fat!” to which I responded, “Actually, I’m not.”

The next day I called her and said, “Mom, do you realize you told me I was fat yesterday?” and she said, “I didn’t mean you were fat, I meant that in that outfit you looked fat.” “Ahh,” I said, “well it is true that I have more of a belly since taking the post-cancer medication but it’s still not okay to tell anyone she is fat.” “I’m sorry,” she said. "Between the awfulness of those boots and those flowery leggings and seeing your belly, I must have temporarily lost all decorum.”

I’ve thought about our interaction a few times since then. I’ve thought: It seems as if it’s never too late for this mother to tell her daughter, despite the daughter’s books on said subject, that she’s fat. And I’ve thought how important it is to know, really know, that the size of my body, of your body, is no one else’s business. And I’ve thought about that belly of mine. How cancer really changed my body—the pain in my breast, the size of my belly—and how, when I don’t turn against myself, or in my mother’s words, lose all decorum—I am still so fortunate to have a body at all.

 

 

Part 106:  My mother used to tell me about Jack Stories. She said that a man named Jack got a flat tire in the country on a cold winter night. He had to walk to the nearest neighbor, as this was a time before cell phones. On his walk, he began telling himself this story about the neighbor: He probably won’t be home. Or else he will be home but will not answer the door. Or else he will answer the door but will shut it immediately when he sees it’s me standing there. Or else he will not shut it but will ask me how stupid a person has to be to be driving on country roads in the middle of winter without checking their tires first. As Jack walked, he was getting angrier and angrier. By the time he got to the neighbor’s house, he was enraged at what he imagined would happen. When finally, he knocked on the door and a man with horn-rimmed glasses opened it, Jack was so furious he punched him in the nose.

 

That’s sort of kind of how I felt when I went to the surgeon’s the other day to confront her about having botched the lumpectomy. I didn’t walk in all puffed up and furious, but I was pretty convinced of my opinions, having heard from the gynecologist, the oncologist and the radiologist that they thought she made the cut at the wrong angle, which is the reason I’ve been in ongoing pain.

The minute she walked in the door—I hadn’t seen her for 18 months—I noticed a warm feeling in my chest. I liked her as much as I liked her when I first met her. And while liking a surgeon doesn’t mean they can’t make mistakes, I had convinced myself that I didn’t like her, that I never liked her, that I got snookered by the medical industrial complex into accepting what she said. I showed her my breast. I talked to her about the pain. I asked her about the angle. I also asked if a resident did the surgery. She said that given the size of the breast (small) and where the cancer was located (almost but not quite under my arm), this is what she had to do to remove the cancer, and no, she didn’t have her resident do the surgery.

I was relieved when I walked out of her office. I’d been telling myself a Jack Story about her (which doesn’t mean that doctors don’t make mistakes, they do, and it’s important to speak up, take action) and a Jack Story about myself. I’d been making myself wrong for choosing her. I know I’ve written this before, but it’s worth repeating: it’s not the situation, it’s what I tell myself about the situation that is so painful. Turning against myself—ourselves—is the worst suffering of all. It’s insidious. It’s often unconscious. And it’s worth stopping every single time. It’s worth asking “what am I making myself wrong for now?” Or, if you’ve turned the gaze outside, “who have I blamed today?” Because on the other side of that stopping is pure lightness, pure freedom.

 

 

 

 

 

Part 107: My first grade teacher’s name was Mrs. Racow. At Christmas, a lot of the students in my class brought her beautifully wrapped presents. They kept piling up: green glittery paper, curly bows, pink puffy packages. I wanted the glitter, the curls, the pink puff so badly that when no one was looking, I stole one of the presents. I hid it under my jacket and brought it home, went up to my pink shagged carpet room and opened it. It was a bottle of perfume that smelled like rotting dead leaves. I remember this incident every Christmas. Mrs. Racow’s tortoise shell glasses, my pounding heart, and the poor student who was never thanked by our teacher. It was not one of my finest moments.



Part 108:  Oh, the holidays. Oh, the sugar. Persimmon pudding, chocolate everything, butter cookies, egg nog…

When I was first diagnosed with cancer, the doctor told me to stop eating sugar. Cancer feeds on it, he told me. And so I have. But it’s the holidays nd fudge, cookies, pumpkin pies—and years of memories—abound.

Since childhood, I’ve associated sugar with love. Once I was put on my first diet at age eleven and warned not to eat sugary things, I began associating two things I couldn’t have: sweet foods and the sweetness of love. Ring Dings, Yodels, cupcakes, coffee cakes, ice cream. And the feeling of being cherished.

Somehow I got it into my mind that my mother was the way she was because I was fat, and the reason I was fat was because I ate too many Yodels but once I was thin, I’d be the girl a mother could love and then I’d I’d be able to eat Yodels again. But once something is forbidden—Yodels or a particular person’s love—it gets charged and enthralling, so I’d binge on sugary foods. At least then I could have one thing that was forbidden.

These are such old associations. It’s like the wires in my brain got crossed. Sugar equals love but sugar also turns it away. And holidays can bring it all up. Again. The family dynamics, the charged foods. The binge foods.

If I go back in time, I’d say to that eleven year old eating the frozen Milky Way as she sat over her garbage pail (just in case someone walked in so that she could spit out what was in her mouth) and say, "Oh sweetheart. It’s true that you landed in a rocky family situation. And I’m sorry for leaving you over and over. Really I am. But I won’t do that again. Forgive me." I’d also say, "It’s holiday time, darling. Look up. Be dazzled by the lights and the dark quiet nights. I’m not leaving again."

 

 

 

 

Part 109: It took me a long time to realize that I wasn't on my own side and that most of us, most of the days, are also not on our own sides. And so, as the new year begins, my question to you is: How can you be on your own side right now?

And: What does that mean to you? Do you see it in relationship to the food on your plate, to saying no when you mean no, to putting your hand on your heart when you first wake up and before you go to sleep (to remind yourself that you haven’t abandoned yourself?).

Here are three practices I do everyday in case you find them helpful. They take a few minutes, that's it.

When I wake up and before I go to sleep, I put my hand on my heart. I feel the warmth of my hand on my chest. I ask myself if there is any way, without noticing, that I am being unkind to myself.

In the mornings (my friend Pilar Gerasimo calls these moments Morning Minutes), before I get out of bed, like a compass pointing my way to the day, I sense my body. I remind myself that my feet can still wiggle, my hands move, my eyes see. I say thank you, thank you, thank you for being alive. Again.
Throughout the day, I look for the good. The mist in the trees. The sound of hummingbird wings. The crunch of a cracker. And I stop and take it in. Over and over because goodness abounds. Really.

Wishing you a jubilantly kind and sane year.

 

 

 

Part 110: I’m deep into a writing retreat. Papers, notebooks, pens. My favorites. Nothing like a V5 Precise black rolling pen. Here’s a line for the day from Dorianne Laux, a poet: “I praise us in advance.” Yes to the healing salve of poetry. Yes to praise. Yes to doing it in advance.

To read the Cancer Chronicles, Part 1-99.