In October 2009, at the age of 67, I got sick and was misdiagnosed with mononucleosis for almost 5 months. As my health continued to decline, my brother, a physician, encouraged me to see an infectious disease specialist and a hematologist. After several rounds of tests, I was diagnosed with Stage 4 Lymphoma – an incurable blood cancer. Within two weeks of that cancer diagnosis, I was also diagnosed with meningioma (a brain tumor).
I received varied treatment recommendations. My first neurosurgeon said the tumor had to come out right away or I would have seizures. The second neurosurgeon told me to deal with the cancer first and then come back to him to remove the tumor. He also told me I would have seizures. He recommended that I ask my oncologist for a drug to help fight the cancer that he had been testing.
I told my oncologist from the start that I would not do chemotherapy. He said he would keep that in mind. Yet when it was time to treat the cancer, he recommended a full course of chemotherapy.
I asked for the drug that my neurosurgeon recommended, but my oncologist was unwilling to put me on the protocol without also receiving two other chemotherapy drugs he recommended. I refused. My oncologist said if I didn’t do what he said, that my lymph nodes would impinge on my organs, my organs would then shut down and I would die. He gave me a handout to read on chemotherapy and sent me to talk to the oncology nurse. Although I was very frightened, I still chose not to do chemotherapy and prepared to die. Arrangements for both hospice and visiting nurses were made.
I eventually found my way to a clinical trial. Many of the study participants had side effects from the drug, so the research team gave us medication to treat those side effects. My body swelled and was covered with huge red itchy rashes from that medication. The doctors gave me another medication to deal with the swelling, rashes and itching that led to heart palpitations and the feeling that I couldn’t breathe. As a result of so many side effects, the trial doctors removed me from the study.
Before leaving, I agreed to a CT scan so there would be a baseline for my cancer. The next morning after the CT scan, I woke up paralyzed with Bell’s Palsy on the left side of my face. In the ER, I was told it was from the contrast they had used in the scan the day before.
I was so upset with everything that was happening to my body as a result of the medical treatment, I decided to end all treatment. I thought, “If now is my time to die, then I will die. But I will not die this way.”
Although I stopped all medical treatment with the thought that I would die, I began to improve. Eventually, I sent hospice and visiting nurses home. As a result of the clinical trial, I now live with incurable neuropathy, incurable lymphedema and incurable Bell’s Palsy; that’s in addition to the lymphoma and brain tumor.
I decided to refuse any further medical interventions. I reunited with a cousin who turned out to be a homeopath and she began treating my cancer and brain tumor homeopathically. I utilize the major medical system I belong to for diagnostic purposes and to monitor my cancer. However, I continue to successfully manage my lymphoma and brain tumor through homeopathic remedies.
I’m grateful that more than ten years later, none of what my first doctors told me would happen, has happened; my organs did not shut down and I’ve never had a seizure. Most importantly, I did not die. At the time, I believed I would die soon. It was a preview of when I will actually face my mortality. When that time comes, I want to and believe I have the right to participate in deciding how my life will end. I hope to have a peaceful and dignified death.
This past year, I have become involved with two groups to help engage my community in conversations around facing their own mortality. When I was told I was going to die by my doctor, I believed him. I had to face my death but there was nowhere to go to talk about it. So I now facilitate a group at the local Women’s Cancer Center that is for women who have run out of curative options and are facing their mortality. I also help facilitate Death Cafes as a hospice volunteer.
I have been proactive in seeking out a doctor who will support my end-of-life decisions, but I have not been able to find a doctor in my county who is willing to prescribe under the California End of Life Option Act. If the day comes that I qualify for the law, I’m going to have to go outside of the county to get help. That’s not how the law was designed. It was designed to normalize conversations around death and dying between patients and their doctors. We need local doctors to step up. What is the point of having a law if we cannot access it?