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!