I had been feeling exhausted for a year. In November 2004, I went for a complete physical exam. The doctor pronounced me the healthiest person of my age group on the planet.
Four months later, I was diagnosed with late-stage ovarian cancer, rushed into surgery, and given months to live. A complete hysterectomy was performed, a soccer-ball-sized tumor removed, much of the omentum removed, part of the colon resected, a few gallons of fluid drained.
Two weeks after the surgery, one of the surgeons called, “The pathology report is in. Congratulations! It’s benign … you don’t have cancer!”
Three weeks later, I went for a post-op visit to the other surgeon. He asked, “Are you working with the oncologists at Group Health?” “What?” I asked, “Dr. Smith told me that I don’t have cancer.”
“We are just arguing semantics,” he replied, “You have cancer. It is called pseudomyxoma peritonei—cancer of the appendix.”
The Chief of Oncology told me that the appropriate treatment was “watchful waiting.” I could have repeat surgeries, whenever the tumors grew big again.
He concluded, “There is no treatment for your disease. And, even if there were, they wouldn’t pay for it.”
I soon learned that there was a tried-and-proven treatment for my disease—cytoreductive surgery and heated intraperitoneal chemotherapy (HIPEC). I found the surgeon who met my criteria, and consulted with him in Washington, D.C.
My insurer denied the treatment, because it was out of area, and out-of-network. I spent two months crafting an appeal. After receiving this document, it took the insurer three days to agree to pay.
On October 4, 2005, I underwent a fourteen-hour cytoreductive surgery, heated intraperitoneal chemotherapy by open perfusion, and four days of early post-operative intraperitoneal chemotherapy (EPIC).
Many areas of tumor were resected, lasered, and otherwise removed. My spleen, gall bladder, and much of my colon was removed. Dr. Sugarbaker spent two or three hours scraping the underside of my diaphragm, which was carpeted with tumor. The lining of the abdomen was stripped (peritonectomy procedures), and scar tissue from the first surgery plus residual omentum excised.
Life after treatment
I had a very advanced case of appendix cancer, and the most aggressive possible treatment for this disease. I spent forty days in the hospital, and suffered serious setbacks and complications.
The bottom line? I set out to do all I that could to get a good outcome. For me, a good outcome meant a healthy life, with no medical issues, no doctor visits, and no recurrence of appendix cancer.
All of my medical troubles happened in the hospital. I have never needed any medical treatment since I returned to Seattle in December 2005.
I run a mile a day, I see no doctors, I take no medications. I’m fine.
Work after treatment
Other appendix cancer patients often ask, “How long before you went back to work?” In a sense, I never went back to work. In another sense, I found my true calling, and I have been working since a few months after the surgery in 2005.
In March 2005, I was a massage therapist. The minute I fell ill and underwent emergency surgery, I lost my business, my income, my savings. I then embarked on a year of two massive abdominal surgeries, fighting my health insurer, recovering from surgeries. I had no idea what I was going to do next.
I was sitting around in my pajamas in January 2006, when an appendix cancer patient from Philadelphia called me, “We heard you had a great victory with your insurance, can you help me?” We talked, we emailed, we cut, we pasted. Four days later, his insurer reversed their denial, and approved his surgery.
Five years later, I have won sixty-five lifesaving insurance appeals—all different insurers, all over the country, all different diseases and conditions. I speak publicly both on insurance issues, and to general audiences. What could be a more rousing story than fighting a Stage-IV cancer and fighting your insurance company at the same time.
I have written two books, so that people can win these battles on their own: Fight Your Health Insurer and Win, and The Sample Appeal. The books are available exclusively on my website.
This whole experience of terrible illness and a second chance on life has left me much improved. I consider my Insurance Warrior career to be a learning experience for both me and my helpees. I am learning how to help.