Fighting Breast Cancer My Way

as told to Erica Rimlinger

For 42 years I have been living with complex regional pain syndrome (CRPS), a disorder that causes severe and continuous pain. At that time, doctors called me crazy, delusional and a liar. One doctor was so abusive that he told me he should “just shoot me in the head.” No wonder some people call the CRPS the “suicidal illness.” The intense, unpredictable pain that left me bedridden for a decade often seemed like the least of my problems: the main battle was getting the medical profession to believe in me and treat me.

After enduring years of mistreatment from doctors, I learned to manage my condition through holistic self-care. I didn’t want to walk into a doctor’s office again unless the need for Western healthcare was undeniable. That day came when I was diagnosed with breast cancer.

When I felt the lump in my breast in 2018, I waited a year to have it checked. I didn’t trust the doctors, who had left me hopeless, abandoned and depressed. But when it didn’t go away and grew, I relented. My first reaction to the diagnosis was shock at having cancer. My second reaction was fear of having to re-enter the Western healthcare system. Twenty years earlier I had been diagnosed Ductal carcinoma in situ (DCIS) in my other breast, and my medical team told me I only had months to live unless I underwent aggressive treatment. I correctly suspected that my doctors would not consider my CRPS and that my body could not handle their regimen. I did my own research and found that most DCIS do not become invasive and overtreatment It was common. I rejected his treatment options.

Now that I have been diagnosed with stage 2B
triple negative breast cancer, It took me six months to decide which treatment would be best. The standard plan chemotherapysurgery and radiation He gave me a needle that was impossible to thread. The healthcare system did not take my CRPS seriously, but I knew that the surgery and radiation would cause nerve damage, increasing my pain to an intolerable level. And he feared he would never calm down.

Cynthia receiving an immunotherapy infusion. 2022.

I decided to have chemotherapy only because I didn’t want to lose the use of the upper right part of my body. As expected, I was verbally abused for thinking outside the box. One doctor told me, “My other patients WANT to live.” I wanted to live as long as they did. But I wanted quality of life. She had lived without him and couldn’t go back there. I had been fighting for my quality of life for decades.

As it turned out, my tumor was a “super-responder”to chemotherapy, completely disappearing by imaging standards. I continued to be monitored and use my self-care techniques, which included exercise, good sleep habits, and careful nutrition.

Eighteen months later, my oncologist found a cancerous lump on my right leg. lymph node which quickly grew to the size of a golf ball. After listening to his treatment plan for my recurrence, I hung up the phone and began screaming in fear and frustration.

He had recommended eight rounds of chemotherapy, followed bya new immunotherapy treatment that had recently become available. After that, he recommended I undergo surgery, radiation, and more immunotherapy. After careful consideration and much research, I only consented to receive low-dose oral chemotherapy and immunotherapy.

The chemotherapy shrank the tumor a little, but then it stopped working. I was horrified to learn that my insurance company would not cover immunotherapy because I had not agreed to surgery. I felt like I was being punished for making my own treatment decisions.

I quickly learned and was going to try a procedure called cryoablation, a technique that freezes the tumor rather than surgically removing it, and I prayed that it would avoid triggering my CRPS. Then a blessed event occurred: the company that manufactured the immunotherapy treatment had a compassionate care program that allowed me to receive the immunotherapy.

After an immunotherapy treatment, my tumor disappeared. My doctors were stunned. There was no need for cryoablation as there was nothing left by cryoablation. They called me a “miracle.”

Looking back from a distance of two years, I wonder if “miracle” is the correct term for what happened to me. Am I a miracle or did I simply make a series of thoughtful decisions that were right for me?

This is not to say that immunotherapy was easy. I was hospitalized for colitis and later developed reactive arthritis. It also increased my CRPS, but at a tolerable level. Simply put, immunotherapy cured me without destroying my quality of life.

I am grateful that years of self-advocacy made me strong enough to stand my ground in the face of doctors who spoke to me as if I were a child. I am also grateful to have finally found a team of four doctors who listened to me, believed in CRPS, and accepted the reality that surgery and radiation would destroy my life.

2020

Best of all, this team worked together, consulting with each other, my life partner, John, and me about my care. Being part of a shared decision-making team that valued individualized care was such a powerful experience that I regained some trust in the medical system. I firmly believe that a doctor who does not feel threatened by other opinions is the sign of a true healer.

Unfortunately, when we are diagnosed with cancer, we tend to panic and blindly put our care in the hands of our doctors. No matter how well-intentioned, we are the ones who must live (or die) with the consequences of their treatment choices. For the best wellness outcome, I believe we must take responsibility for our own care, and that includes self-care practices so that our bodies are healthy enough to get the most out of the treatments we choose. I’m sure I’m still here today because I followed my instincts.

Today, I eat a healthy, cancer-fighting diet full of fish, berries, nuts, and leafy greens. I am an avid swimmer and spend a lot of time cuddling my kitties. I meditate and pray every day, as I work to release past traumas that have caused my illnesses. I have gotten better at forgiving people who have hurt me and abandoned me.

Additionally, I do creative and meaningful work. I continue to run the nonprofit I founded 22 years ago to help other suffering women. And I’m rekindling past passions. I spent my childhood preparing for a career as an artist, but as a part-time wheelchair user with CRPS, the doors of Hollywood have closed on me. After fighting for my life twice, that no longer stops me. I recently landed a top agent and am already receiving great auditions and calls for acting and singing roles. Yes, I’m doing it my way.

I hope to reach my third year cancer-free, which my team says is the goal for a cure. Until then, I will continue to trust myself with my health and happiness.

This educational resource was created with the support of Merck.

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