Wednesday, January 27, 2010

Predictability Masks Fear

I have gotten a few panicked calls and emails from some of you wondering why I disappeared. Am I okay? What’s wrong? Why no blog entry?

I am doing quite well, considering what I am navigating. I was away for 8 days on retreat, at a Continuum Depths Retreat. I need to be able to drop my role as caretaker and deadline-maker and just care for myself. If you rely on the predictability of my blog entries it will only cultivate fear when the pattern of my entries shift. If you were afraid I was in crisis when I didn’t post a new blog entry, then when I do provide you with an entry it only masks that fear, which will inevitably arise again if I wait too long before the next entry.

If you have a mammogram every year and then check the fear of breast cancer off your list of fears, think again. First of all, it doesn’t guarantee anything. It’s a great example of doing something by rote on a regular basis to assuage fear. If you eat well and exercise regularly because you can then cross those things off your “to do” list they offer little protection. Care for yourself because you have a deep longing to feel cared for, not because you’re afraid if you don’t you’ll die. One of the themes of my retreat was inquiring into the effect of creating a false sense of safety with predictability and repetition. Children thrive on routine, and in some cases we still need it as adults, but creativity and curiosity are squandered by sameness.

Read my blog because you are curious about what I have to say and because you care for me. Don’t read my blog because it makes you feel better if I’m doing well. Your well-being is not dependent on mine. I appreciate everyone’s concern for me, but please let go of the need for me to show up with a set rhythm in your life. It just might set you free. Caring for myself and not others during this phase of my life is an important part of my healing. Look at the places in your life where you give the power over your well-being to someone else. Commit to empowering yourself, and join me in the healing that unfolds from having the reference point of your Health within yourself.

(If you haven't read Chapter 5, "Health As The Reference Point" in my book, now would be a great time.)

Another Damn Lesson In Patience

Here is a brief medical update, before my next entry, for those of you interested in the details…
My workups with both the cardiologist and the nephrologist (kidney specialist) turned out fine. I have a great heart. It just happens to be beating irregularly from pain, stress, sleep deprivation, and having my life turned up-side-down. We don’t really know which, but I’m doing better, so it doesn’t matter. I am continually attempting to give up my attachment to cause and effect when things are unknown and unknowable.

My kidney function is normal right now, but it had dipped down for a while. I have had some cysts in one of my kidneys for more than 20 years, and though it normally works fine, the combination of pain, stress, and medication might have pushed my kidney a bit beyond its limit. Since my kidney function is back to normal we’re just watching it. My blood pressure is coming down, my irregular heartbeats are much fewer and farther between, and I’m sleeping much better.

BUT… I am still in constant pain. It never goes completely away, but it is less intense. I am a bit more able to move, but I feel the ramifications each time I try to lift so much as a light grocery bag. I get fatigued from just about anything I do, and I nap several times a day when I can. When I can’t nap, I am still prone to falling asleep in doctor’s office parking lots if I have a few extra minutes before an appointment.

My sense of vulnerability leaves me feeling incredibly tender. I am still afraid that the wrong move (or an overenthusiastic hug) could fracture my sternum or ribs. The grief over the (temporary) loss of my upper body strength and abilities runs deep. It’s been 5 months already since this ordeal began, and I have a long way to go. Patience… another damn lesson in patience.

Statistics Or Sadistics?

A professor of mine from Hunter College (City University of New York, circa 1976) wrote the word "SADISTICS" on the blackboard as I entered my first day of statistics class. I was a little nervous as I took a seat in the back of the room, near the door. I was apprehensive about his approach to teaching this much abhorred subject, so I found comfort by the nearness of the door. As he introduced himself and explained that "sadistic" is what the subject would be if applied improperly or out of context I began to relax. Recently my statistics-induced distress has been rekindled.

I cannot tolerate the discussion that inevitably arises around cancer “survival statistics.” It’s a cruel game to tell a person (like me) with metastatic breast cancer, that 80% of women with my diagnosis live less than 5 years. News like that hits like a bomb dropped directly into the gut. The same words also mean that 20% will live more than 5 years. There are about 180,000 new breast cancer diagnoses each year. 60,000 of these are metastatic, like mine, meaning that they have already spread to an organ or tissue beyond the place where the cancer growth originated. 12,000 of these women will live more than 5 years. Who are these 12,000 women? What makes them different from the 48,000 who don’t make it? Can I be one of the 12,000? Statistics can’t answer my questions.

Statistics are about incidences within groups of people; they say nothing about individuals. It is irrelevant and cruel to tell someone what their personal chance of survival is based on this form of math. Any of us could die in a car crash on the highway tomorrow in the rain and totally mess up a mathematician’s fancy formulas. Informing a cancer patient of their prognosis based on numbers seems more like sadistics than statistics to me.

I also think it’s cruel to not tell someone with a disease that has a poor prognosis that this is what they’re up against. If someone has a type of cancer that kills 95% of its victims in less than 3 months they need to know that that possibility exists, and prepare themselves for whatever happens. I understand the utility in generalized predictions, but I also know a woman who has survived with pancreatic cancer that was diagnosed 27 years ago, a nearly unheard of situation. Statistics only help us make educated guesses. They don’t dictate outcomes.

Randy Pausch, author of The Last Lecture, is arguably a person who has most effectively used his prognosis and life expectancy statistics. Being the incurable academic that he was (sorry for the tasteless pun), he delivered a fabulous “Last Lecture” for his wife and young children. He turned it into a You Tube video and a book, for them to have his final words of love and wisdom delivered in his favorite format, a blend of PowerPoint, comedy, and inspiration. In addition to capturing his last words of wisdom and wishes for his family and friends, his lecture provides support for his family from the millions of copies that have sold since he’s passed.

Statistics can be confusing, and create dissonance with the reality of how you actually feel. I had a patient many years ago who had a very rare type of brain tumor. His doctors kept telling him about how unusual his condition was, and he wondered what that was supposed to mean to him. A rare disease is not rare for the person who gets it! In this case, the statistics only made him feel like a freak of nature.

Another patient of mine discovered he was HIV positive many years ago during a routine insurance physical. He was perfectly healthy, happily married, with a great job, and a wonderful life. In the ensuing 2 years, he was divorced, lost his job, had to move to a small dreary apartment, and became morbidly depressed about the possibility of dying from AIDS, even though he had not gotten sick yet. One weekend, when some friends convinced him to go to the beach to try to cheer him up, an unexpected thunderstorm moved in quickly. Running to find shelter from the storm, he ran past a phone booth (the tallest metal object nearby) and was struck by lightning. He spent 2 weeks in the burn unit before he died of the burns and other complications from the lightning strike. I went to visit him a week before he died and he was laughing, telling jokes to everyone in the unit, trying desperately to make up for the way he felt like he had wasted the last precious 2 years of his life. He asked me to tell his story to anyone I meet who is upset because they think they know how they are going to die.

No matter what any statistics say about probability, they are theoretical. Life has too many variables that are unknown and unknowable. 100% of us are going to die, and we won’t know when, or how, or why, until it happens. It's not unreasonable to make contingency plans based on science and statistics as long as we aren't fixated on a specific outcome. I am vaguely interested in statistics, but I don’t take scientific proclamations and statistics literally as the bottom line. The context of my life is more important than any statistic. The way I influence and relate to the internal and external environment of my life sways the statistics.

I appreciate that it might be useful to track trends and associations. My gripe is with the way we tend to attribute meaning to them. Statistics are not personal or individualized. They do not imply any cause or effect. For example, I have noticed in a casual study of my patients that 100% of women with breast cancer brush their teeth daily, but brushing their teeth did not cause their cancer. Many people mistake associations with causes. The truth is that we just can’t know what is unknowable. I am more comfortable living with the mystery than with false hope or a death sentence.

I am still reeling from the one physician who looked at my sternal tumor, which I told her had decreased in size by about 1/3 prior to any mainstream medical treatment, and looking me right in the eyes said, “This just doesn’t happen.” She didn’t say, “How odd. I wonder how that happened.” She wasn’t curious about how I was living my life and what I might be doing to shrink my tumor. She just denied my individual reality because she couldn’t fit me into her paradigm. She plugged my diagnosis into her mental flow chart and offered me palliative treatment that would “keep me as comfortable as possible in my 2-3 remaining years.” How rude and arrogant of her to sentence me to the death dictated by her algorithm. Needless to say, I did not pursue any treatment with her.

Statistics are based on the past, but I live in the present. When they state the statistic that 80% of women with metastatic breast cancer die in less than 5 years, they are referring to women of the years past. The breast cancer treatment scene is one of the most rapidly changing and dynamic fields, and I am one of the most rapidly changing and dynamic people I know. It’s hard to predict where a moving target is going. Rather than predict my trajectory based on past women’s fates, I’d prefer live into the possibilities of my unique alternative futures.

We have the power to make some choices that might affect our fate. There are aspects of our lives that are knowable and controllable, and other aspects that aren’t. We can’t change the fact that we have eaten food that was wrapped in plastic. We have no choice but to breathe the air we are given. I can’t control the effects of the DDT truck that sprayed for mosquitoes in my Miami childhood neighborhood. Rest assured that I am making all the choices I can to be one of the 12,000, but ultimately I don’t get to choose what happens, and the statistics don’t choose either.

I made a fabulous pot of lentil, tomato, vegetable, shitake mushroom soup today. I strongly believe that I have a 100% statistical chance of enjoying a bowl for lunch today.

One of the best pieces ever written on this subject of cancer statistics was sent to me by my friend Jordan. It was written by Stephen Jay Gould, the evolutionary biologist and science writer, who lived 20 years with a cancer that statistically had an 8 month median survival rate.

Jordan is the person who conducted the interview with me that is available on my website. For more interesting stuff he has compiled go to his great site:

For those of you still trying to make some sort of peace or educated choice about mammograms, here is a link to an article from the New York Times that explains the math:

Sunday, January 10, 2010

Changing Hats For Blog Tech Support

I have received questions from many of you about technical difficulties on my blog. Allow me to switch hats and play the tech support nerd.

Are you tired of checking my blog for new entries? You can sign up to be a “Follower” of my blog and get email notification when I post a new entry. To do this you need a Google account. If you have a Google account already, just click on “Sign in” on the upper right corner of the page, and skip to the next paragraph for instructions.

If you don’t have a Google account, you can easily sign up for one. It’s free and it won’t require you to do anything. It is misleading, because to simply get an account you click on “Create Blog,” which doesn’t have anything to do with starting your own blog, unless that’s what you want to do. This is just the way to create a Google account. Fill in the stuff they ask (email, choose a password, etc) and then you can sign in.

After signing in, click on “Follow” which you will find on the left side of the toolbar at the top of the page. A window will open and ask if you want to “Follow Publicly” or “Follow Anonymously.” I do not publicly list my Followers on my blog, so following publicly will only allow me to know you are reading my blog. If you follow anonymously, no one will no you are following my blog, not even me. When you have chosen, click “FOLLOW” at the bottom of the window.

I have purposely blocked the ability for you to leave comments on my blog. I don’t like the idea of publicly sharing everyone’s comments. If you want to send me a comment, please just email me directly at

If you want to simplify finding my blog, the easiest way to get to it is to go to and click on the link that says, "Go to Bonnie's health blog." Otherwise, you can go directly to

I have received so much (regular "snail") mail from many of you, and luckily most of you have my current address:
3233 Valencia Avenue, Suite B6
Aptos, CA 95003

Unfortunately, a few of you have sent mail to my old office on Park Avenue in Soquel and I have not received it. Steve and I moved 2 ½ years ago, and the post office won’t forward mail for more than a year. It was bad timing, but we decided to move 2 months after my book was published, so my book has the incorrect address. Our old mail carrier, Darcy is an angel and when she noticed a deluge of mail and packages coming to the old address she called me to let me know something was up. Please update your address books.

I am almost done with my next 2 entries, so give me a few hours or a day and there will be news and a more philosophical entry. The ocean is booming this morning and I have a feeling it’s going to be a great day for a walk on the beach. My friends in New York are freezing. It was 1 degree there this morning. Please go enjoy yourselves. Life is too precious to complain about the weather.

Thursday, January 7, 2010

I Don’t Even Buy Green Bananas

Last year Steve and I were at a weekend workshop with my old Osteopathic teacher Stan Schiowitz. I don’t mean to call Stan “old” even though he is 87. He’s more energetic than I was at 25, back when I first met him 28 years ago. What I mean, is that he was my teacher in “the old days,” back in the early 80s. He now comes to California twice a year to teach a small group of us. I am amazed at his clarity, his teaching ability, and his continual sense of evolving understanding of Osteopathy. Any of you who have had me touch you have felt his hands through me.

Steve asked Stan a question about the future of Osteopathy in the US, and Stan answered, “Don’t ask me things like that; I don’t even buy green bananas.”

That’s how I feel these days. Buying green bananas relies a bit too much on assumptions about the future. I can make an appointment for a week or 2 away, but beyond that I start to get fuzzy. I can’t cope with plans or thoughts or questions about the distant future. It’s not that I’m hopeless or pessimistic, but it all seems so theoretical. I need to stick close to “the moment” and take life as it presents itself to me in the short term.

I have times when I dream about returning to teach in Europe, visiting my friend Carole in Hawaii (where I have never been) or going on some other great adventure, but these goals or plans don’t really help me. They make me anxious, because I inevitably have the next thought, “What if I don’t make it there?” Too much future-oriented living brings me up against the unknown and unknowable, which is challenging enough to face in the present. As another old teacher of mine used to say about too much thinking about the future, "It's a bad neighborhood. Don't go there. You'll get mugged!"

Cancer has made me feel “isolated in time.” I have always had big plans. My personal appointment book is a 2-year planner. Juggling Germany, France, Holland, Belgium, teaching around the US, taking workshops, and visiting far-away friends used to be effortless. Zipping back-and-forth from California to New York was routine. Now it seems presumptuous to make a plane reservation.

I am in shock that the world goes on and that other people have such elaborate plans that rely on the future being a certain way. I see my 17-year-old step-son planning for college, and I am in awe that his life is not isolated in small chunks of time like mine.

I have great faith that if I stay in the stream of life, composed of every present moment strung together into one flowing continuum, that I will have my great adventure somewhere, someday, somehow. I just can’t get attached to the specifics of when it will happen and what that adventure will look like.

Tuesday, January 5, 2010

Mr. Spock & I

I haven’t had an entry for a few days because I have been feeling a little “dip” in my energy. After so many relatively feel-good days, I ended up bed-ridden on New Year’s Day. I was just too exhausted to get out of bed for more than an hour or so. I've been getting these fluttery irregular heartbeats that make me feel exhausted. (I have a cardiology check-up scheduled later this week.) Frequently on a challenging day like that, Steve surprises me with some little gift to cheer me up. This time Steve bought me a Spock bobblehead.

 Spock lives on the edge of our kitchen table and seems quite absorbed in all of our conversations. He’s wearing the Starfleet uniform, giving the traditional Vulcan split-finger hand gesture, and if you touch him or the table on which he stands he says one of 3 things as his oversized head bobs, “Live long and prosper,” “Fascinating!” or “You are, after all, essentially irrational.” No matter when he speaks, which often seems spontaneous, unprovoked, and random, his comments are always appropriate.

I have always loved Spock and identified with him. Although he is generally thought of as “logical” if you have watched as much Star Trek as I have, you know his greatest inner conflicts involve dealing with the irrational emotions he inherited from his human mother. I feel for him.

He and I also now share being vegetarians. Neither of us is a proponent of eating animal flesh, but we have both secretly enjoyed it at some point in our lives. (See Star Trek: The Original Series, Episode “All Our Yesterdays.”)

Being overachievers in school has endowed both of us with the opportunity to explore otherwise unknown territories, and form great friendships while doing it.

I aspire to one more characteristic of Spock – his longevity. Although I don’t expect to make it past 150 (Vulcans live about twice the average for humans), I have every intention of living as long as I can and prospering. I have some serious questions about what exactly it means to, “live long.” And while I’m at it, I’m also questioning what it means to “prosper.” Forget about accumulating wealth, I enjoy the definition, “to flourish physically; to grow strong and healthy.”

We are all, after all, essentially irrational, so enjoy all the silly little gifts that come your way, and may you live long and prosper. Fascinating!

Friday, January 1, 2010

A New Blog Entry Is On It’s Way… But First, The News

As you might assume from the way I cranked out this blog entry after a week of not writing, I am feeling pretty good today. The “new year” feels somewhat meaningless to me. I can’t stay awake past 9:30, so I slept through the midnight hour, not even disturbed by my drunken neighbors, who Steve tells me partied until 3 am. The calendar seems so arbitrary to me, I can’t get sentimental about auld lang syne.

The surgery to remove my ovaries, although only 3 weeks ago seems like it was minor. I’m completely healed from that ordeal. I've been on the estrogen-blocking medication Arimidex for 2 weeks and I'm having no noticeable menopausal symptoms. How great is that?!

My main complaint is still the pain in my sternum and ribs, mid-back and neck. The pain is constant and still fairly limits my ability to move my torso and arms, but it is so much less intense than it was a month or 2 ago. I haven't taken any pain medication in 2 1/2 weeks. I have a hard time believing that Vicodin or Percocet have abusive potential. They may take the edge off the pain, but I hate the way they make me feel. At the beginning of this situation, I would take one to allow me to get to sleep, but the pain doesn't keep me up anymore. I can't handle ibuprofen and other anti-inflammatories anymore. They make my blood pressure go up and upset my stomach, so it's an occasional Tylenol (which doesn't do much) or nothing. I don’t have that horrible feeling that my bones could crumble with a wrong move anymore.

After 3 biopsies, it seems like I’m finally done with that ordeal. They got a good tissue sample from my last biopsy at Stanford. We didn’t learn anything new that will help us now. It doesn’t change my treatment or prognosis, but it might be necessary to have these details in the future. I’m happy to be done with the information gathering part of this process.

I’ve been trying to exercise more, with varying amounts of success on different days. I walk on the beach. On a good day, I can go 6 or 7 miles. Even after a short walk, I come home and pass out for an hour. I lightly bounce and move around on a big gym ball several times a day. I have an array of things I have adapted to my quirky body that blends Gyrokinesis, Pilates, yoga, Feldenkrais, stretching, doing wave motion, and Chi Gung. I would probably drive anyone who is a purist about any of these approaches crazy with my blend of movement, breath, and energetic consciousness, but it works for me. And of course, I do my usual “Continuum immersion” every day (and often in the night.)

I get exhausted by 10 or 11 am, and again by 3 or 4 pm. I nap at least 2-3 times in a day (when I don’t have to run to appointments or fill out forms.)

I have lost about 20 pounds voluntarily. Don’t worry, I’m not wasting away. I actually feel great a bit lighter, and women with breast cancer who have less body fat tend to do better. The body stores estrogen in fat cells, and in my case, I need to eliminate all of it. Eliminating animal fat from my diet feels so necessary right now. Although I dream about cheese and ice cream, I certainly don’t miss beef. I never ate it more than 2 or 3 times a year. I have the distinction of being able to claim that I have never had a McDonald’s hamburger. I hear that many of you have become self-conscious about your diets in response to my uncharacteristic rejection of animal fat; please relax about it. I am on what I consider temporary extreme “nutritional chemotherapy.” Make good choices and love your food, so that it loves you back. Less animal fat, and more fiber is good for everyone. Read Omnivore's Dilemma by Michael Pollan if you want a non-cancer-oriented guide to eating more plant-based, socially responsibly, and simply.

If you’re trying to eat less beef, and finding it difficult to do so, read this article and have one more good reason to avoid it:

For a more upbeat and comprehensive guide to preventing and treating cancer, this has continued to be my favorite resource:
Take a look at this website, or just buy the book, Life Over Cancer by Neil Block, MD for some inspiring and helpful ideas.

If you are engaging in new year’s resolutions, please consider making a resolution to take care of yourselves, simply because you yearn to feel cared for, and work on transforming excessive worry into grounded, action-oriented concern. And go have a good laugh to celebrate life.