Sunday, August 21, 2011
Heading for 90
“Clear a place in the sand for me where I can hide my head.”
That’s from a poem I started during disturbing times several years ago. I never added to that first line, as it seemed to say it all. Now that I have decided not to go for genetic counseling to learn whether I have a gene identified with a higher risk of breast cancer, I thought at first that the line from my poem may apply.
Some background: I have had breast cancer twice, in 1995 and in 2009. I’m the first in my family. We have always specialized in other insidious diseases, but not breast cancer. Anyway, I’m fine now and “heading for 90,” as my kind-hearted surgeon advised me almost two years ago.
A week ago, I interviewed a doctor for a freelance article on Ovarian Cancer Awareness Month, which is in September. He works where my St. Louis doctors work, and I asked him if he knew them. He did. I said that these fine individuals had cared for me both times I had breast cancer. This doctor, a geneticist and gynecologic surgeon, then told me that with a history of two primary breast cancers, one when I was 47, I meet the national criteria for genetic counseling and possible screening to see if I carry genes associated with breast cancer.
Last Monday, I made an appointment for genetic counseling. You supply your full health history and that of your family, and at the appointment, the counselor helps you decide whether to schedule the $3,000 blood test that tells you about your genetic makeup. Depending on your level of risk, insurance may pay for the test.
Next I contacted my doctors in St. Louis, who said they doubt I have the gene. I contacted my oncologist in San Francisco, who said she doubts that I have the gene -- but apologized for not informing me about the option of genetic counseling and screening, as I do indeed meet the criteria.
Next came a couple of days floundering in the waters of uncertainty.
Intellectually, I was intrigued with the idea of genetic screening. After all, knowledge is power. Emotionally, I was already viewing the counseling appointment as a black cloud in my future. What if the counselor recommended screening? What if the screening showed I have the gene? What would I do with that information? What would the information mean for my future?
When you have experienced the elemental fear that a cancer diagnosis brings, you tend to get anxious about anything associated with it, including the annual mammogram and routine follow-up visits with the oncologist. That deep-seated anxiety, always at hand, sometimes spills over into other areas of life, so you have to be vigilant about not walking on eggs. Life is more fun when you break all the eggs and whip up some French toast, omelets or a quiche with bacon and onions.
I pondered what genetic screening might mean to me, to my son and his wife, to future generations. I talked to friends, including other cancer survivors. I read Dr. Bruce Lipton’s “The Biology of Belief,” a book about epigenetics, which is the study of genetic changes caused by environment, rather than DNA. I considered the odds of having to hear what could be soul-sapping information.
Then I remembered: I don’t do odds.
When I co-authored “Chemotherapy & Radiation for Dummies” and when I gave speeches all over St. Louis every year for Breast Cancer Awareness Month, I always quoted Han Solo. In the first “Star Wars” movie, at one point Han Solo is trying to maneuver the dilapidated X-wing fighter through a field of asteroids. Ever helpful, C3PO starts to rattle off the odds of the plane making it through the field.
Han Solo turns to the droid and yells, “Don’t tell me the odds! NEVER tell me the odds!”
In this very blog, two years ago when I was trying to sell the condo and move to San Francisco, I wrote: “I do not have fulfilling relationships with numbers, especially scary numbers, so why learn them? If you learn them, won’t they just flit around in your brain and drive you crazy?”
In defense of numbers, I like knowing that 76 percent of Baby Boomers worry about money and that one in four seniors struggles with poverty -- so says the AARP. That means when I fret about money, I’m behaving normally for my generation. Worrying about numbers related to cancer risk is something altogether different.
No matter what a genetic screening test may show, I am aware every day that I have already had breast cancer twice. I also am aware that a woman who is 65 today has a 50-50 chance of living to 85. And I know that worrying about money causes stress and that stress sets up a bad environment for genes -- and that could prompt disease. Do I really need to know anything more?
As I stood at the bus stop on my hill late last week, I was blasted with chilly 25-mph winds from the ocean, which is just three miles from my apartment. “Blow away the worry,” I yelled at the wind. (Odd behavior is not just tolerated in San Francisco. It’s standard.) I added, “Blow away the worry and the fear and the obsession with all numbers!”
Friday night, I decided to cancel the appointment for genetic counseling. I also decided I will not accept any more writing assignments that deal with cancer. This morning, I realized that these decisions have nothing to do with hiding my head in the sand.
This is all about heading for 90.