As reported toErica Rimlinger
For 42 years, he lived with a
Complex regional pain syndrome (CRPS), a disorder that causes continuous severe pain. At that time, doctors told me that she was crazy, insane or that she was a liar. One doctor was so abusive that he said I should “just shoot myself in the head.” No wonder some people refer to CRPS as the “suicide syndrome”. The intense, unpredictable pain that left me crippled for a decade often felt like the least of my problems: the main struggle was getting medical professionals to believe and treat me.
After enduring years of mistreatment from doctors, I will learn to manage my disorder using holistic self-care. I didn’t want to walk into a doctor’s office again unless the need for Western medicine care was undeniable. That day came when I was diagnosed with breast cancer.
When I felt a mass in my breast in 2018, I waited a year to get it examined. I didn’t trust the doctors, who made me feel hopeless, abandoned and depressed. But when it didn’t go away and got bigger, I gave up. My first reaction upon hearing the diagnosis was shock at learning that I had cancer. My second reaction was fear of having to enter the Western healthcare system again. I was diagnosed 20 years ago.
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 were not going to consider my CRPS and that my body would not be able to handle the proposed regimen. I did my research and learned that most DCIS does not become invasive and that unnecessary treatments They were frequent. I rejected his treatment options.
When I was diagnosed
triple negative breast cancer From stage 2B, it took me six months to decide what the best treatment would be. The standard plan chemotherapysurgery and radiation It was something impossible for me. The health system did not take my CRPS seriously, but I knew that surgery and radiation would cause damage to my nerves, which would increase my pain to an intolerable level. And I feared it would never get better.
Cynthia receiving a 2022 immunotherapy infusion.
I chose chemotherapy only because I didn’t want to lose the ability to move the right upper part of my body. As expected, I received verbal abuse for my non-traditional views. One doctor told me, “my other patients WANT to live.” I wanted to live as long as they did. But I wanted a good quality of life. I know what it’s like to live with a poor quality of life and I didn’t want to do it again. I strived to have a good quality of life for decades.
Apparently, my tumor”reacted extremely well” to chemotherapy, disappearing completely by imaging standards. Please continue with follow-ups and my self-care techniques, which include exercise, good sleep habits, and careful nutrition.
Eighteen months later, my oncologist found a cancerous mass in my lymph node right that grew rapidly until it reached the size of a golf ball. After listening to her treatment plan for my recurrence, I hung up the phone and started crying out loud from my fear and frustration.
He recommended eight rounds of chemotherapy, followed by a new treatment of immunotherapy which had recently become available. After that, he recommended that I undergo surgery, radiation, and more immunotherapy. After careful consideration and much research, I agreed to only low oral dose immunotherapy and chemotherapy.
The chemotherapy shrank the tumor a little, but then it stopped working. I was terrified to learn that my insurance company would not cover immunotherapy because I did not agree to surgery. I felt like I was being punished for making my own decisions about treatments.
I quickly learned of a procedure I decided to try called cryoablation, a technique that freezes the tumor instead of surgically removing it, and I prayed that it wouldn’t trigger my CRPS. Then an event occurred that turned out to be a blessing, the company that provided the immunotherapy treatment had a compassionate care program that allowed me to have access to 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.”
After two years, I wonder if the word “miracle” is the correct term for what happened to me. Was it a miracle or did I simply make a series of thoughtful decisions that were right for me?
I’m not saying immunotherapy has been easy. I was hospitalized for colitis and then developed reactive arthritis. It also dramatically increased my CRPS, but at a tolerable level. In other words, immunotherapy cured me without destroying my quality of life.
I feel lucky that the years I defended my rights made me strong enough to defend my decision in front of 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, who believed I had CRPS, and who accepted the reality that surgery and radiation would destroy my life.
2020
Best of all, this team worked together, sharing 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 does not feel threatened by other people’s opinions is the sign that he is a true healer.
Unfortunately, when we are diagnosed with cancer, we tend to panic and blindly put ourselves in the hands of our doctors. However, regardless of your good intentions, we are the ones who will live (or die) with the consequences of your treatment decisions. For the best outcome, when it comes to our well-being, I think we need to take charge of our own care, and that includes self-care practices to make our bodies healthy enough for the treatments we choose to work best. possible. . I know for sure that I’m still here because I follow my instincts.
Now, follow a healthy, cancer-preventing diet with plenty of fish, berries, nuts, and green leafy vegetables. I love swimming in the pool and spent a lot of time with my kittens. I meditate and pray every day, as I work on releasing previous traumas that have promoted 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 women in pain. And I’m rekindling old passions. I spent my childhood preparing for a career in the entertainment industry, but part of the time we used a wheelchair and living with CRPS, working in Hollywood has not been a possibility for me. After fighting for my life twice, that doesn’t stop me anymore. I recently contacted a great agent and am already having big auditions and have even been called for acting and singing roles. Yes, I’m doing it my way.
I look forward to my third cancer-free year, which, my team tells me, is the baseline goal for a cure. Until then, I will remain confident in my health and happiness.
This educational resource was prepared with the support of Merck.
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