Saturday, December 26, 2009

Another Biopsy, Living In The Stream Of Life, Enthusiasm, Rest, & The Spark Within

On the way home from Stanford last Wednesday with my friend Beth (oh, by the way, my biopsy went well and the 2 sites are almost healed), she reminded me that too much striving to do what I have been calling, “breathe and meet the moment” might objectify the moment and the whole endeavor could get sabotaged. The moment is not a thing. The moment is fleeting, and is connected to another moment, and another, and another. . . Focusing on a moment is like looking at a photograph of a dance and thinking you know the dance. Being present in the moment is a dynamic and constantly changing process. It’s not a goal or a destination.

This idea will be interwoven into the Continuum exploration in Beth’s January class. If you are interested in Continuum or exploring the fluidity of the body, the fluidity of our perception of time, and living and moving in the stream of life, check out Beth’s website and schedule for her monthly class:

In the midst of all the many and varied things I’m feeling these days, I have a tremendous amount of enthusiasm about writing and some other projects I’m brewing. My friend Carole (Jungian analyst and Continuum Teacher) tells me that the root of the word “enthusiasm” is “enthos,” which means, “God is in you.” I love this exploration of the deeper meaning of this word. What an empowering concept!

I often ponder the significance of the waves I feel of fatigue, pain, and disease, that are inevitably followed by enthusiasm. I can feel awful one minute and inspired the next. Sometimes I feel both simultaneously! If I surrender, and allow myself to rest when I am tired and hurting, I always end up ready to get out of bed and write or cook or go outside and enjoy the day. Enthusiasm is not external; it is an internally generated milieu.

I struggle with getting judgmental about lying down and resting. Life seems so precious and there's so much I want to do. I have to keep reminding myself to respect the rest phase, which I might have been negligent in doing in my previous life. Now that I am living with cancer, I literally have no choice. There are days when I fall asleep in the middle of a sentence while sitting at the kitchen table. I get to a point almost every day where I would keel over if I didn't lie down. I often remind other people that if all we did was inhale, we’d explode. Life is phasic. We inhale, and then we exhale. Life requires a balance of both. There is no enthusiasm without rest to support it.

Emilie Conrad loves to remind us that “God is not elsewhere.” You might also say that "God is everywhere." As long as I don't separate myself from what I think of as God, I haven't externalized and objectified the Divine Life Force that expresses itself through my enthusiasm. In my study and experience of many religions, I find a common thread in all of them that is consistent. Enthusiasm is the voice of the potency of the life force welling up from within. When rules and rituals are taken literally and imposed as external laws, I suspect a power-play is at work, as opposed to a true spirituality.

I had a spiritual teacher many years ago who would say to me, "I love you, and it has nothing to do with you." No one "makes" you feel anything. What you call a "feeling" is generated from within yourself. If something external has sparked your feelings of love or enthusiasm, remember that the spark is yours. If you celebrate Christmas, feel that spark within you from where the celebration arises. God is not specifically in a tree, or a church, or a present, or a family gathering. God is in you, and that is true whether it's Christmas day or the day after Christmas when everyone has gone home and there's lots of garbage and recycling to deal with. The holiday props and the story we tell about the holiday are just reminders to get us to feel connected and live it from within.

My holiday wish for everyone is that you find something to feel enthusiastic about, and deepen your life from within.

Friday, December 25, 2009

Chow Mein, A Good Film, And Laughter On Christmas

So many of you have voiced concerned about how Christmas is going to be for me this year with my “situation.” People who celebrate this holiday have a really hard time imagining that someone else doesn’t have any attachment to it. I don’t. The first Christmas I was involved in was in 1997. I was 41. Christmas has traditionally been a day for me that involves mostly Jews, with a few Buddhists, Hindus (and others not interested in traditional Christmas, especially in New York) eating Chinese or Indian food, going to the movies, going for a long walk, and listening to comedy. For a group of people (Jews) who can tend to be overly serious and burdened with their ancestral history of oppression to spend a day celebrating another religion’s holiday with food and laughter is a healthy expression of life force. Please, I hope no one is offended by this. If there is a God who wants something from us, I hope it’s laughter. Laughing is my favorite form of praying.

If your Christmas is in need of some more humor, check out David Sedaris’ fabulous true story (not suitable for young children) about the year he worked as Crumpet the Elf in Macy’s New York:

Please don’t get me wrong. I have nothing against Christmas, and what it truly stands for. I ponder the commercialization and distortion of the holiday by capitalism, and try to find a way to connect with the essence of Divine child energy and the possibility of miracles on this sacred day. Having minimal exposure to the holiday until I was in my 20’s, I come to this day with a fairly innocent sense of wonder and no emotional baggage. I just crave chow mein and a good film!

Friday, December 18, 2009

No News Is Good News

Some of you may be wondering why there’s been no blog entry for days. Don’t worry. No news is good news; I just need a break. I am actually feeling somewhat better. I’m healing well from surgery and in much less pain in my sternum and ribs. Today I had a profound visit from a dear old friend, a great long walk and a nap. It was the first chance I’ve had to indulge in such simple pleasures in weeks, maybe months. I yearn to have days without appointments, paperwork, and misery, to simply care for myself more deeply.

Movement (exercise) and breath are simple, yet profoundly helpful. Since I have no energy to write much more for you to read, go check out this article that explains why getting off your butt decreases anxiety:

I was inspired by the finding that rats (yes, even rats can be inspiring) who exercised, when placed in a stressful, unfamiliar situation, didn’t run for dark corners and hide, like the unexercised rats. They calmly explored the unfamiliar environment. I aspire to be more like these rats!

Enjoy these last few days of increasing darkness. The light begins to return on Monday! Happy Solstice. Have a wonderful weekend, don't stress about holiday stuff that doesn't really matter, and care for yourselves by getting outside and moving.

Saturday, December 12, 2009

After The Disability Forms, The Gates Of Hell

It has taken me weeks of working hours each day to complete my disability application forms. I am in awe of those who manage this task when they are injured or more seriously ill than I am. I have no comprehension whatsoever of how a person navigates this process without medical and financial training!

Way too much of my creative energy has gone into writing expense lists and describing why I can't bend over a treatment table, lift other people's bodies, and make judgment calls about other people’s health right now. You might think it would be straight-forward, but they make you jump through hoops, an activity nearly impossible while applying for disability. Documenting my inability to work is about the last thing I want to do before or after a biopsy, but I need to get some financial support flowing. I've given to this insurance company for 22 years, now I am ready to receive.

Steve and I dropped by the post office after completing my forms to send them registered mail, and then we headed north for the Stanford Cancer Center. After my visit there, we strolled on over to The Cantor Arts Center on the Stanford campus. For those of you who’ve never been there, it is an amazingly great place. I’ll begin with praise for the food. The museum café serves delicious, primarily organic food, with lots of healthful options. It’s a fabulous diversion from a day in the medical complex, especially when sitting outside and pondering Rodin. The lawn and courtyard around the museum building are dotted with his sculptures.

When my step-sons Ben and Luke were young (around 5 and 7) we would take them to the Rodin sculpture garden, where they could play and eat and have some “stealth” art and emotional education. We’d have them pose and imitate the sculptures and then ask them how they felt. They totally got it. They learned how their bodies held and conveyed feelings and emotions. They could see it and feel it, and then they could run around and eat something yummy. We didn’t even have to go inside the museum; there was so much outside to see and experience. For them as little kids, this was a perfect day at a museum. It was for me too.

But this visit to the museum was not part of a so-called “perfect day.” Ben and Luke were not with us, and I have metastatic breast cancer. All I can do is weep as I touch the back of Rodin’s “Fallen Caryatid,” a sculpture of a woman crouching, carrying a boulder on her shoulder. All the photos of this sculpture view it from the front, but it is the back that conveys the deepest message for me.

If you can visit the museum sculpture garden, look for her and touch her back, especially the left side of her mid-lower thoracic spine. You might get a sense of how I feel. I have felt like her for years and years. I always attributed my physical sense of burden to the effects of bending forward over a treatment table all day, or to the effects of my residual adolescent scoliosis (read pages 150-154 of my book for this story.) I recognize something in the way she braces herself.

Like the women who were taken captives and enslaved by the ancient Greeks after whom this sculpture is named, I feel like I am burdened with holding up the roof of the temple with my back. I don’t know if this feeling is part of the cause of my cancer or the effect of it. Does it really matter how or why I have found myself living with cancer?

I can’t remember feeling this way that day on the beach when I was 6-years-old (see p. 11 of my book), but I can picture myself at 12, around the time of my first menstrual period, and I can recall the compressed sensation in my spine. Did this begin with estrogen, or was the oppressive sensation of teenage angst independent of my hormones? As my estrogen levels fade away over the next week or two perhaps I’ll have a clue.

Across from where my friend “The Caryatid” sits, is “The Gates of Hell” Rodin’s magnum opus. Rodin incorporated a tiny version of my friend into this massive sculpture, and positioned her at the top left corner of the Gates. At the center of The Gates is the well-known figure of “The Thinker.” The Thinker sits atop a rock, leaning forward with his chin resting on the back of his right fist. He leans with his right elbow bent and perched on his left knee. His muscular body is literally twisted and looks tortured and compressed by his thought process. Steve has always appreciated this image as a reminder that “thinking” is the entry point to hell.

Today my body feels rigid and unchanging, like these sculptures, a physical representation of life, but slightly out of time phase. I find it nearly physically impossible to be fully present when my body screams from the past. It is the nature of the stuff our bodies are made of to be impressed by the past. Our tissues and cells and spaces adapt to our lives. We are like the wake left in the water after a boat passes through, or an echo that persists after what made the sound is gone. We are a "residue" of some larger process. What we see and hear and touch and feel and smell is already a few steps removed from the process that formed it. How can we be engaged, embodied, and present when faced with the challenge of what we carry from the past?

I laugh about how cerebral I can be about all of this suffering and wonder if having insight about how I got this way will help me find a way out. I sit with Steve at “The Gates of Hell” trying not to think about our lives. Breathe and meet the moment is really all I definitively know how to do. How my life is unfolding seems unknowable while immersed in the incoherence of cancer, but breath and presence are simple and coherent, the only medicine that matters.

Wednesday, December 9, 2009

There's No Place Like Home

I want you all to know I'm doing fabulously. The procedure went very well. I got home at about 4 pm today and I feel (relatively) great. I just have a slightly sore belly and feel a bit loopy from the anesthesia and medications.

I have photos of my ovaries, taken through the scope right before he snipped them - a sort of nerdy remembrance of body parts past. I thanked my ovaries and prepared for sending them on their way, along with anything they might carry away with them that I don't want or need. Now I don't have to worry about ovarian cancer!

I'm sure I'll sleep well tonight and may tomorrrow bring the beginning of the unfolding of the next phase of my life.

Thanks for being there and checking in on how I'm doing. Take care of yourselves.

I'm Off To See The Wizard

I'm off to see the wizard of the laparoscope. I am having my estrogen-generating ovaries removed at 9 am this morning (here in Santa Cruz at Sutter). If all goes well, I'll be home by dinnertime. There's no place like home.

We will try to post a short note tomorrow morning, just to let you know I made it through the ordeal ok.

Thanks so much for all your notes and heartfelt wishes. I couldn't feel more supported and loved.

Friday, December 4, 2009

My "Mainstream" Plan

I can’t make this entry poetic or clever. I’m too tired. But I know so many of you want to know how my Stanford consult went. So here’s the news:

I met with a fabulous woman physician who has devoted her life to being at the growing edge (sorry for the bad pun) of breast cancer treatment. She is quite optimistic about my situation. Here are some of the reasons she is:

Although cancer has spread to my bones, it’s the "nearby" bones (sternum, ribs, clavicle), which is better than if it had spread to my spine or my femur. The fact that I have it only in bone, and not in my liver or brain or lungs is great news. It is easier to treat, and tends to be more responsive to treatment. Estrogen-sensitive cancers that spread to bone tend to not spread elsewhere, especially once they are being treated by estrogen blockade.

The fact that my tumors are very estrogen sensitive gives her the hope that they will respond to blocking all the estrogen we can from my system. This is how we will do that:
On Wednesday, December 9th I am having my ovaries removed. This may sound drastic, but it will save me from years of taking medications to suppress them. I am not attached to any organs that might kill me; Take them away! It’s a fairly simple procedure, done through a scope, and I might not even need to stay overnight. Recovery should be fairly easy. The main effect of this surgery is sudden onset menopause. Let’s hope my experience is graceful in its unfolding.

After the ovaries are gone, the next source of estrogen is the adrenals. Our adrenal glands make a lot of hormones and love to convert some of them from one form to another. To suppress that source, I will take a pill once a day called an “aromatase inhibitor.” There are a few different ones, and I’ll probably cycle through all of them over time. I’m starting with Arimidex.

Yesterday, I had my first IV infusion of Zometa, a drug used to inhibit the activity of the bone cells called “osteoclasts” that are responsible for breaking down bone. Osteoclasts are involved in allowing metastatic tumors to grown in bones. We’re not sure how often I will take it, but I was willing to do the first dose and see how I respond. My concern is that inhibiting osteoclast activity for too long might decrease the remodeling process in my healing bones. For those of you who have read my Chapter 6, “The Mutability of Mesoderm,” especially the section on “Bone Health, Aging, and Degeneration” you know what I mean. I am certain I can find the balance between getting the cells that are breaking my bones down to quiet down, and the ones that need to remodel and rebuild my affected bones to gear up.

Traditional chemotherapy, radiation, and mastectomy are not in the cards for the short term. I might end up needing one of those approaches in the future (weeks, months, years, we just don't know yet,) but not now. Yay! Because I have such estrogen sensitive tumors, we hope just eliminating the estrogen will do the biggest part of the trick. I will go this “less is better” route as long as it works (6 weeks, 3 months, 5 years; we don’t know.) We’ll be constantly reevaluating.

The general sentiment is that many women with breast cancer are over-treated. Out of the fear of not-knowing we usually drop the atom bomb to kill a mosquito. In some cases, where we know the cancer is aggressive or not amenable to treatment, it might be necessary, but not in my case. The cancer may have spread, but it is considered to be a responsive type. Let’s hope it is.

In addition to this mainstream treatment, I am doing everything I can to alter my estrogen metabolism, promote an anti-inflammatory state, and stimulate my immune system. It has taken a few weeks, but I am no longer joking about Julia Child, butter, cheese, and ice cream. I got that I have to eliminate (nearly) all the animal fat from my diet. I didn’t make a “decision.” I have just been naturally drawn to do it since Thanksgiving ended. I’m using the book, Life Over Cancer by Neil Block, MD as one of my guides, and consulting with a nutritionist who is one of his researchers and contributors to the book. Building Bone Vitality by Amy Joy Lanou, PhD was reviewed in the NY Times last week, and I am also finding it interesting.

I take my craving for seaweed very seriously, and I’ve eaten some every day for months now. However, when I have a craving for Haagen Dazs, I just breathe and meet the moment, remembering that my metabolism doesn’t need that right now.

I still need to go back to Stanford for biopsies of both breasts. The last biopsy didn't get the tumor. We don’t need the biopsy information now to plan treatment, but if we wait too long, we won’t be able to find any tumor to biopsy, and months or years down the road if we need the information to make other treatment choices, we won’t have access to it. But this can wait until I recover from surgery.

I am researching many other interesting options. Thank you all who have sent me recommendations. I am perusing them all.

Today Steve and I are off to see my first Osteopathic teacher, Stan Schiowitz, who is 87 and here visiting from New York. He is one of the most beloved people in my life. Any of you who have benefited from my Osteopathic view of the world have him to thank for setting the stage for my education and career to unfold. He provided me unique opportunities while I was a student (as he still does) and encouraged me to dive deeper into what fascinated me. He was also the first teacher to put his hands on top of mine and show me how to feel. All of you who have been touched by me, have been touched by him.

I have so many half-written blog entries, but I have had so little time at home to do anything but shuffle papers, fill out forms, make appointments, and plan my new way of eating. During the days after my surgery next week, I am hopeful that I will have an out-pouring of writing energy. Stay tuned for lots more…

In the meantime, do something good for your bones today. Here are a few unconventional ideas. Change your relationship to gravity: hang sideways off a chair and lean on your hand or forearm (Continuum folks know what I mean by this), or bear weight in a new way, like lying on your side on the floor pretending to ride a sideways bicycle. Bounce on a big gym ball. Take some Vitamin D with your calcium and magnesium. Ask someone to hug you and squeeze you really hard while you squeeze them back; I am convinced that few things are better for your bones!