There are many things I claim as part of my identity: Motherhood, being a wife and life partner to my husband, being a grandmother and Mimi, being a singer-songwriter and even being a Camp Host nomad living in an RV in my semi-retirement life (which is great by the way!). Claiming endometrial cancer (EC) as a part of my identity was not on my punch list — and it still isn’t. It was a process to even come to terms with the diagnosis.
But diagnosis isn’t where my story starts. My story goes back more than 20 years ago, to when my mother passed away from cervical cancer.
Learning from my mother’s experience
My mother did not go to the doctor for check-ups and Pap smears on a regular basis. A doctor told her she had fibroids when she was 35 or 40 years old, and she never went back. She turned to natural foods and herbs as her healers, so by the time she had an abnormal Pap with a cancer diagnosis in her 50s, it was too late to do anything about it.
While she knew she had fibroids, I believe her fear of the unknown made her choose not to visit a doctor’s office. She told me “I don’t want to be cut on,” which meant no surgery of any kind. She wore not having surgery as a kind of badge of wellness, and I inherited that same badge for my own life. Five months before she passed, she ended up having a full hysterectomy, but refused chemotherapy. It only would have given her three to six months more to live.
Her doctors told me that her cancer was not hereditary, and therefore, I would have nothing to worry about. But I learned from her experience of not going to a doctor. Whenever I was due an appointment with my doctor, I kept it. I caught a cyst in my breast, had it aspirated, and found it to be nothing but fluid. Every Pap smear was normal, even after going into menopause.
Then the pandemic came along, and I, along with everyone else, stopped keeping up with appointments. I figured I had nothing to worry about. I was in good health. I had been vegetarian by choice for more than 20 years and kept up a very active lifestyle. I had run-walked a half marathon and completed two Mud Runs, after all.
A sign of something wrong
In October 2024, while I was sitting in my RV watching television, the heavy bleeding started. It was a shock after not having had a menstrual cycle for about five years, and an immediate red flag.
I was worried. The same thing had happened to my mother. She started bleeding while in full menopause. My first thought was this was not normal. My second thought was that I needed to get to a doctor, stat! I wanted to act on it, not ignore it.
At the time, I only had insurance in California through the Affordable Care Act (ACA); I had not seen my regular gynecologist since we moved from Texas in 2021. I was not going back to Texas anytime soon, so I considered finding a local doctor. I was concerned with how long it might take to see someone as a new patient. While all of this was happening, our camp host position in San Diego County, California, was ending and we were leaving the campground to head to Oregon to see family and friends for a month.
It was a wonderful trip! We meandered our way up the coast of California and Oregon in our RV — and it was beautiful. I basked in the mountains and the beauty of the coast. I am truly thankful for that time to just be there and experience nature in a new location. Even though we encountered some mechanical issues on the way, it did not deter us. We had an amazing time in Oregon, despite my intuition telling me I needed to get back and find out what was going on with my health.
The bleeding continued off and on during the entire trip, even though I kept trying to will it to go away completely. I do not know why, but I felt that I could not be intimate with my husband while all of this was happening to me. It was like I was embarrassed or I did not think he understood. I kept it all bottled up inside. I wanted answers, and I wanted my life back!
When we arrived back in Southern California in November, I picked up a temporary job — as I sometimes did when we were in between camp host gigs in the winter. When we settled in at our RV site, I got super busy onboarding for my new position and learning my new tasks. Unfortunately, I put off trying to find a local doctor. In mid-December, I finally decided to go ahead and call Planned Parenthood for an appointment. They were able to take me at the beginning of January.
Searching for answers
They did a Pap smear and set up an appointment at an imaging center for a transvaginal ultrasound. By February, I went in to the Planned Parenthood office for the results.
What they found was uterine polyps. No tumors or growths at all. The polyps (or one large polyp) were compressing into my endometrium, and the area it covered measured 4 ✕ 2 ✕ 2 centimeters. They wanted to refer me to their surgeon for a hysteroscopy, but my insurance would not cover it. My insurance did not even cover any of these appointments! I put some on a credit card, and paid cash for some others.
I got referred to a gynecologist, but I didn’t finally see him until mid-May. Getting this appointment was a long process that involved a lot of phone calls, a visit to my primary care doctor, and an incorrect referral to a doctor that only delivered babies! The biopsy on the polyps was performed by hysteroscopy on June 12, and I would receive the results on June 26. Between February and June, I really tried to just do my normal day-to-day job, visit with my family and friends, spend quality time with my husband and just know beyond a shadow of a doubt that all was well.
When I received the news that it was indeed endometrial cancer, I froze in fear and disbelief. This surely could not be my new identity.
Candace’s story continues in her next column: “A new wellness journey: Learning to embrace surgery for endometrial cancer.”
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