Sharing the news of health care breakthroughs, advocating on behalf of patients, and delving into the science of saving lives have been the cornerstones of my career. Medicine has been my livelihood in my career as a health care communications strategist, and now it is my life raft.
I’m a stage IV ovarian cancer survivor. It took a full year from the time my symptoms appeared until my diagnosis. That was a difficult journey, full of angst and obstacles. My hope is that, by sharing my story, women will stop questioning whether "it's all in their heads" and start taking action before this sneaky, deadly disease takes them.
Symptoms that shouldn't have been ignored
I knew something was wrong. It was fall of 2020 early in the COVID-19 pandemic. I noticed spotting, which is not normal for a postmenopausal woman. After all the cancer stories I read or wrote about, my instincts immediately told me that it could be cancer.
My primary care physician, not affiliated with UC Davis Health, ordered a pelvic ultrasound, which didn't show any cancer. As I reflect, I remember the results indicated that one of my ovaries had been obscured. By what? I never asked more questions. Could it have been a tumor?
I've specialized in educating patients and the public on the proactive approach we should all take to managing our own health. My gut told me I should get to the bottom of it all.
I was accessing health care during the pandemic, which created greater complexity for me and other patients in navigating the system. Still trying to be proactive, I returned to my doctor in January who ordered an endometrial biopsy. The results were normal. After a biopsy, some bleeding is typical. The spotting continued.
Life started getting in the way
Ongoing concerns about my health were overshadowed by a new and demanding job. I didn't drive for more answers. I had a new puppy. He needed training. I ignored the fatigue. I brushed aside the bloating. Like many women in middle age, I chalked it up to not exercising enough, not eating the right food. I did not put the symptoms all together nor did my physician.
In early September 2021, I took a nine-day river rafting trip down the Colorado River. It was extremely hot in the canyon and the water was muddy, as it often is. When I returned from the trip, I was bone tired and assumed that it was from hiking in the heat and sleeping on the hard floor of the Grand Canyon. I tried to rest more.
Sometimes, even pets know when something is wrong
My Labrador retriever, Bowie, kept burrowing his nose into my belly. Being from a long line of hunting dogs, his nose was always at work, so I didn't think too much about it. But then, I discovered that my belly button was oozing — yes, oozing!
Back to the doctor I went. Antibiotics were prescribed for a possible infection (due to the muddy conditions during the rafting trip). I was to make a return visit if there was not an immediate change, which there was not, and now I had a swollen gland in my groin area. I was sent for a scan of my stomach and pelvis. It was now late September 2021. Still no sign of cancer was detected.
The mystery continues until a dog walking accident (so glad I got that energetic puppy)
On Monday, October 4, 2021, I set out to walk Bowie. He was full of energy per usual and I was not. Before I knew it, I had fallen flat on the sidewalk. Back to the doctor I went. In enormous pain from the fall, I had chest X-rays taken, and I braced for what I thought would be the news of broken bones.
The three scans showed metastatic carcinoma, which was found in my ovaries, my omentum (fold in the lining of my abdomen), and my lungs. After a full year of trying to determine a diagnosis, a dog walk gone awry is what, ultimately, caught my cancer. By the way, what my Lab had sniffed out was a Sister Mary Joseph nodule, an umbilical mass resulting from the metastasis of malignant tumors in the pelvic or abdominal cavity.
A bone scan looking for metastases found a fractured sternum (breastbone) and ribs, which caused so much pain that in the beginning, that was my focus. The stage IV metastatic ovarian cancer diagnosis took longer to sink in. As I faced advanced ovarian cancer that had spread, I was mad that I had not continued to navigate and push to find out what was wrong with me.
No time to waste
Within weeks, I was sitting in an infusion room receiving a potent chemotherapy combination of carboplatin and paclitaxel, which is the standard first line of offense for my type of cancer. It involved infusions of the chemo cocktail every three weeks to shrink the cancer before undergoing surgery. I had high-grade serous ovarian cancer, which is known to respond well to chemotherapy. After my third infusion, my pre-surgery scans showed a complete response. Such good news!
Seeking specialty care at UC Davis Comprehensive Cancer Center
When it came to my surgery, my background kicked in, again. I did my research. I knew I could obtain specialty surgical cancer care from UC Davis Comprehensive Cancer Center while I was getting cancer care elsewhere. I had written about rural community hospital patients who were getting such care locally while seeking specialized cancer treatment from UC Davis.
My doctor was completely comfortable with the partnership, and we went forward with UC Davis gynecologic oncologist Rebecca Brooks performing what, in the end, was a highly successful surgery in early 2022.
I really appreciated Dr. Brooks' well-rounded experience in ovarian cancer, her background, and how honest and comforting she was about the surgery. Dr. Brooks is so well-known that a gynecologic surgical oncologist at a different health care system told me if she needed the same surgery, she would go to Dr. Brooks.
Three more infusions followed the surgery, with my last in April 2022.
I am on the PARP inhibitor Lynparza for two years to prevent a recurrence. I have to be careful with what I eat and stay hydrated. I sometimes get winded, which is annoying when I'm hiking and skiing.
The importance of genetic testing
After learning that the BRCA1/BRCA2 genes can increase the risk of ovarian cancer, I pushed for quickly doing genetic testing. I tested positive for the BRCA2 gene, which is an indicator for not just ovarian, but also breast, melanoma, prostate, colon, and possibly pancreatic cancers. This is when I became angry. Why was I never tested? Both my mother and my brother had cancer. None of us were tested.
In my opinion, this is a flaw in preventive health care, and I intend to advocate on behalf of patients like me. Genetic testing should be part of women's health guidelines and be as easy to get as a mammogram or a Pap test. And insurance providers should cover biomarker testing for any patient who requests one.
If your body is telling you something, don't ignore it. Keep navigating the health care system until you have an answer. I feel like I let my foot off the gas pedal and did not take time to follow up on what the next steps might be. I also assumed that what are now the obvious symptoms were just common female complaints. I was wrong and it almost cost me my life.
I am fortunate that, because of my career, I know more than the average person about health care. But yet, that hard-to-diagnose ovarian cancer nearly got the best of me. The nurses and doctors are there to help you, but they cannot do it all for you. There are no stupid questions.
Women are courageous, so be courageous. And don't stop until you get the answers.