As told to Erica Rimlinger, for 42 years I have lived with Complex Regional Pain Syndrome (CRPS), a disorder that causes intense and continuous pain. During that time, doctors told me I was crazy, delusional, or a liar. One doctor was so abusive that he said I should “just shoot myself in the head.” It’s no wonder some people refer to CRPS as the “suicide syndrome.” The main struggle was convincing medical professionals to believe and treat me. After enduring years of mistreatment from doctors, I learned to manage my disorder using holistic self-care. I didn’t want to step foot in a doctor’s office again unless the need for Western medicine was undeniable.
That day came when I was diagnosed with breast cancer. When I felt a lump in my breast in 2018, I waited a year to have it examined. I didn’t trust the doctors, who made me feel hopeless, abandoned, and depressed. But when it didn’t go away and grew larger, I gave in. My first reaction to the diagnosis was shock at learning I had cancer. My second reaction was fear of re-entering the Western healthcare system. Twenty years ago, I was diagnosed with 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 wouldn’t consider my CRPS and that my body wouldn’t withstand the proposed regimen. I researched and learned that most DCIS doesn’t become invasive and unnecessary treatments were common. I rejected their treatment options.
When I was diagnosed with stage 2B triple-negative breast cancer, it took me six months to decide on the best treatment. The standard plan of chemotherapy, surgery, and radiation was impossible for me. The healthcare system didn’t take my CRPS seriously, but I knew that surgery and radiation would cause nerve damage, increasing my pain to an unbearable level. And I feared I would never get better. I chose chemotherapy only because I didn’t want to lose the ability to move the upper right part of my body. As expected, I faced verbal abuse for my non-traditional views. A doctor told me, “my other patients WANT to live.” I wanted to live as much as they did. But I wanted a good quality of life. I know what it’s like to live with poor quality of life and didn’t want to go back to that. I strived for a good quality of life for decades. It seems my tumor “responded extremely well” to chemotherapy, completely disappearing according to imaging standards.
I continued with follow-ups and my self-care techniques, including exercise, good sleep habits, and careful nutrition. Eighteen months later, my oncologist found a cancerous mass in my right lymph node that quickly grew to the size of a golf ball. After hearing his treatment plan for my recurrence, I hung up the phone and started crying out of fear and frustration. He recommended eight rounds of chemotherapy, followed by a new available immunotherapy treatment. After that, he recommended undergoing surgery, radiation, and more immunotherapy. After careful consideration and much research, I only agreed to immunotherapy and low-dose oral chemotherapy. The chemotherapy shrunk the tumor slightly, but then stopped working. I was terrified to learn that my insurance company wouldn’t cover the immunotherapy because I didn’t agree to surgery. I felt punished for making my own treatment decisions. I quickly learned about a procedure called cryoablation, which freezes the tumor instead of surgically removing it. And then, a blessing occurred. The company providing the immunotherapy treatment had a compassionate care program that allowed me to access the immunotherapy. After an immunotherapy treatment, my tumor disappeared. My doctors were amazed. There was no need for cryogenic ablation because there was nothing left to remove. They said it was a “miracle.”
Two years later, I wonder if the word “miracle” is the right term for what happened to me. Was it a miracle or did I just make a series of well-thought-out decisions that were right for me? I don’t say that immunotherapy was easy. I was hospitalized for colitis and then developed reactive arthritis. It also dramatically increased my CRPS, but to a tolerable level. In other words, immunotherapy cured me without destroying my quality of life. I feel lucky that the years I spent advocating for my rights made me strong enough to stand up for my decision against doctors who spoke to me as if I were a child. I also feel fortunate that I eventually found a team of four doctors who listened to me, believed I had CRPS, and accepted the reality that surgery and radiation would destroy my life.
Best of all, this team worked together, shared information about my care with each other, my partner, John, and me. Being part of a team that made decisions together and valued personalized care was a powerful experience, and I regained some trust in the medical system. I firmly believe that a doctor who isn’t threatened by the opinions of others is a true healer. Unfortunately, when we’re diagnosed with cancer, we tend to panic and blindly put ourselves in the hands of our doctors. However, regardless of their good intentions, we are the ones who will live (or die) with the consequences of their treatment decisions. For the best outcome regarding our well-being, I think we must take charge of our own care, including self-care practices to make our bodies healthy enough for the treatments we choose to work as best as possible.
I know for sure that I am still here because I followed my instincts. Now, I follow a healthy diet, with plenty of fish, berries, nuts, and leafy greens to prevent cancer. I love swimming in the pool and spend a lot of time with my kittens. I meditate and pray every day while working on releasing past traumas that have contributed to my illnesses. I have improved in forgiving those who have hurt me and abandoned me. Additionally, I do creative and meaningful work. I continue to lead the nonprofit organization I founded 22 years ago to help other women in pain. And I’m reviving old passions. I spent my childhood preparing for a career in the entertainment industry, but part of the time, I used a wheelchair, and living with CRPS, working in Hollywood has not been a possibility for me. After fighting for my life twice, that no longer stops me. I recently contacted an excellent agent and am already having important auditions and have been called for acting and singing roles. Yes, I’m doing it my way. I look forward to achieving my third cancer-free year, which, my team tells me, is the benchmark for a cure. Until then, I will continue to have confidence in myself with my health and happiness.
This educational resource was prepared with the support of Merck. Are you a woman with real stories you’d like to share? Let us know. Our stories are authentic experiences of real women. HealthyWomen does not endorse the views, opinions, and experiences expressed in these stories and do not necessarily reflect HealthyWomen’s official policies or positions.
