Anyone dabbling in numerology might view 9/9/99 as a mystical date, favorable digits, lucky numbers. It was anything but for Laurel after mentioning a lump in her abdomen to her PCP. “I was diagnosed in 1999, had a surgical debulking 9/9/99 followed by chemotherapy, achieved remission (YAY!), but recurred in 2003, followed by another surgical debulking followed a week later by yet another surgical procedure due to peritonitis, an infection of the peritoneal cavity.” She continued, “In other words, I am very fortunate to be alive! I had to have a temporary ostomy, then more chemotherapy, ostomy reversed and have been ‘no evidence of disease’ [NED] since.
This year will be 22 years since I first heard the words from my primary care provider, ‘you most likely have ovarian cancer.’ When I picked up my x-ray film at the hospital in Colorado Springs, the first thing I did was open that large, heavy envelope to read the radiology report. It stated, ‘Most likely very advanced ovarian cancer, poor prognosis.’”
The C-word can send people into a panic, cause a tailspin from which there is scant recovery. But Laurel is inquisitive. She asks questions. She wants to KNOW what she’s up against and her prognosis. She wielded her sassy flair when her doctor advised her if she “takes chemo she might see a five-year survival.” That did not sit well with the now 75-year-old who said, “I’ll see you in TEN years if YOU’RE still around, doc!”
Laurel was speaking up and out early in her cancer journey. “When it was suspected I had recurred again, my ovarian cancer researcher/oncologist prescribed a PET scan and in his next breath said it would not be covered by insurance. He said it was the gold standard, at the time, but to know with specificity, he highly recommended it. I paid $3,600 for the scan that showed no cancer found, the price of peace of mind. My next call was to the Centers for Medicare and Medicaid [CMS] to learn why this ‘gold standard’ test was not covered. I called every day and finally worked with a group at the Mallinkrodt Institute of Radiology / Washington University in St. Louis. Together, we presented a research proposal to institute a registry to gather data on the efficacy of PET scans as CMS had no hard evidence to rely upon. A National Oncologic PET Registry [NOPR] was introduced with 100,000 PET scans covered for several cancers including ovarian. At the conclusion of the registry, over 36.5% of patients’ anticipated treatment changed due to the scan. A National Coverage Determination was issued based on the registry results because one very persistent patient/patient advocate asked ‘why?’ CMS was on my speed dial!”
She recollected one person at CMS who was aware of the daily calls asked if she would cease phoning if they paid for her procedure. Clarifying if he meant hers solely or everyone’s, he offered, “Yours.” Without missing a beat, and well aware it was only fair for all, Laurel retorted, “I’ll talk to you tomorrow.”
Despite more than two decades passing, not a lot has changed in ovarian cancer treatments, although there has been progress using targeted therapy, as well as genetic testing for those at higher risk of the disease. But thanks to Laurel’s involvement, insurance companies now pay a more equitable share of the costs. Once Medicare approved PET scans, traditional insurance adopted the same coverage. She also worked with a group in Arizona to ensure passage of the Oral Parity law where patients receiving oral cancer treatment do not pay more than they would if taking IV treatment.
Between cancer treatments, her medical advocacy for others, family obligations and life in general, it’s a challenge to imagine Laurel has ANY downtime. She’s always enjoyed sewing and recently has not only boarded the mask-making bandwagon, sending two large shipments of masks to the Navajo Nation and destined for elders, but she has been crafting handbags and wallets. Her stitches are so swift, when she found herself needing a better-sized purse the night BEFORE a trip to Hawaii, she whipped up a gorgeous leather one in plenty of time prior to takeoff! Her details are intricate, her colors are vivid, she’s a creative genius behind the (sewing) machine!
You can say Laurel is atypical, unusual, exceptional, inspiring, incredibly fortunate, just do NOT call her an OUTLIER in front of her daughter! At one time, Laurel’s daughter heard her mother being labeled an outlier, so Laurel’s greatest champion rebutted, “She is NOT!” misinterpreting her mom being called an outright liar! Just as Laurel has her tremendous support system, declaring, “My husband is my rock. He has sat through my many surgical procedures with our eldest daughter, and our entire family,” she reminds anyone with cancer not to panic when diagnosed. “Reach out, ask questions, get support.” In treatment rooms, cancer patients call each other “foxhole buddies.” Be a buddy, find a buddy and fight the battle … together! There’s hope!