Get in good trouble

#healcancernaturally #goodtrouble #civilrights #healthcare #plantbased #surgery

John Lewis told us to "get in good trouble"

Never, ever be afraid to make some noise and get in good trouble, necessary trouble.

–John Lewis (1940-2020), civil rights leader, U.S. Congressional representative, Freedom Rider

A new person in our integrative cancer support group, Sofia, asked how she should tell her doctors that she didn’t want surgery. I volunteered to talk to her because for many, including myself, it isn’t so obvious how to say no. This is especially true if you (like me) were socialized to say ‘yes.’ Most often I go along with the authorities, and I find it even more difficult to say ‘no’ in a medical situation where I don’t have previous experience.

As a woman, I fit the easy-going stereotype, raised to please people and to say yes. I’m Asian American, taught to be humble and to honor and respect elders and teachers. I like to get along with people and to say yes to good things. I’m grateful for the love and care of my elders and for the hard work and generosity of my teachers, who have shared their knowledge.

Possibly my own experiences with racism, sexism and other forms of stupidity are how I’ve learned that sometimes we all must say “no.” 

Instinctually most of us know what is right and wrong. Like Lewis, we need to make some noise and say no to authority, especially if it is for our own safety and dignity or the safety and dignity of others. Not all of us will have the courage to stand up like Lewis, who was attacked by angry mobs and arrested 24 times. But advocating for ourselves in our own medical care? Every person needs to learn that. 

With the standard protocol for breast cancer, I saw some clear problems. If surgery, radiation, and chemo could get rid of cancer, why are recurrence rates so high? Recurrence rates are over 30 percent for breast cancer and much higher for other kinds of cancer. My surgeon wanted me to have my body part cut out, but she could not recommend a diet could powerfully reduce and reverse cancer? For example, Methionine Restriction: Ready for Prime Time in the Cancer Clinic, (in the journal Anticancer Research) says:

"Methionine restriction is another strategy to selectively starve cancer cells, since cancers are addicted to methionine, unlike normal cells."

I can point to critical thinkers I know who managed their cancer successfully without following the doctor’s plan (SuAnn Kiser and best-selling author Chris Wark). 

Surgery is appropriate for some problems, but cancer may not be one of them.

I didn’t argue with my doctors, but gently insisted that my own plan and timing be respected. They reluctantly agreed because they had no choice. They couldn’t force me to have surgery and radiation. And fortunately, by the time I was supposed to have surgery, which they scheduled despite my instructions and which I canceled promptly, I had a PET scan that showed a clear reversal of my cancer. 

But why do doctors insist on going with the standard protocol? For one, they learn the standard protocol in medical school and they are bound by their medical licensing and their employer. Cancer doctors in the US follow the protocol of the National Comprehensive Cancer Network (NCCN), which develops and updates the treatment for cancer in the U.S. “These guidelines are used not only in the U.S. but have been translated into multiple languages and are considered the standard of care in many countries around the globe,” says Peter Enzinger, MD from the Dana-Farber Brigham Cancer Institute. NCCN is made up of 33 leading cancer centers (including the one where I get my medical care). If doctors don’t follow this protocol, they could have their license revoked and they could be fired. If the medical organization doesn’t follow the protocol, it could be sued.

I told my doctors that I wanted six months to try my plant-based diet, supplements, and a hormone blocking drug. Because my breast cancer is estrogen-positive, meaning that estrogen fed the cancer, a hormone-blocking drug is often prescribed. In the standard protocol, that drug is given after surgery. Since I didn’t want surgery (at least not right away), I asked for the drug before surgery, and they gave it to me.

Stand up for your rights in medical care and elsewhere.

In my own life, I’ve seen instances where good trouble, necessary trouble was needed. As a kid, running around the streets of Washington, D.C. in the 1960s, my non-Asian friends pointed out my physical features. “How come you don’t look like us?” they’d say. Comments like that bothered me. 

At the school playground one Saturday morning, my brother and I endured taunts like “Ching Chong Chinaman” and the bullies pelted us with water balloons. One night in 1964, when I was eight years old, my oldest brother Bruce was followed home from his McDonald’s job. He had complained of coworkers mocking him for being Chinese and for planning on going to college. That night, the MG sports car he had borrowed from our uncle Edmond was set on fire. We awoke to the phone call from our nextdoor neighbors, who saw the flames and called the fire department for us. Fortunately, the car and one mature magnolia tree were the only victims. Arson? Most likely.

When my mother was six years old and lived in Baltimore, MD, she was not allowed to go to elementary school. The oldest child in her family, she was forced by my grandparents to stay home to help take care of the other kids. When the truant officer came to visit their house to look for her, my grandfather hid her in the closet. Eventually, she was allowed to go to school because she could walk her younger brother to school. I've heard sexist comments about myself as well. In high school an acquaintance said, "Cyndi will never get into Harvard! She's a social butterfly." It's true that I am a social butterfly, but I graduated from Harvard magna cum laude in the 80s.

Perhaps the racism and sexism I observed were good practice for saying no. Whether it’s equality or truth in medical care, let’s stand up for what’s right.