A Wild Ride
Referring to her course of treatment for the diagnosis of ovarian cancer she received in 1994, Meg Gaines, JD, LLM, says: “I had a healthcare experience that included everything from bona fide negligent medical error to brilliant risk-taking that saved my life, and everything in between.” Professor Gaines gave TH a summary of the incidents that spurred her to co-found the Center for Patient Partnerships at the University of Wisconsin in Madison.
When I was initially examined my gynecologist, she thought she felt an ovarian cyst. She scheduled a laparoscopy, but the cyst burst during surgery. That’s probably how I wound up with a tumor in my liver.
My surgeon and second gynecologist didn’t tell me this. First they said it was not cancer; then they said it was borderline tumor. Then I had the pathology reread and there were two different ovarian cancer cell types.
Next, my primary care physician missed that there were blood clots metastasizing. He put me on pain meds and, ultimately, crutches before I wound up in the hospital with pulmonary emboli. I was put on such a high dose of anticoagulants by my medical oncologist that he couldn’t reduce them quickly enough so that my blood could clot and they could perform a biopsy. An IV infusion of vitamin K, given to me too quickly, put me in anaphylactic shock.
When my liver was able to be biopsied, the pathologists found ovarian cancer. Very shortly after the biopsy result, one of my oncologists scheduled me to get a port put in for my chemotherapy. When I woke up from that procedure, I had this strange feeling like I’d had when I’d had the pulmonary emboli and went into shock: I couldn’t breathe. The surgeon who put the port in had been summoned emergently as my left lung had collapsed; he had punctured it trying to install the port in the left side. Four days later, with a still-not-fully-inflated left lung, the cardiologist opined that the chest tube was too small and recommended installing a larger one, removing the smaller one first. So the surgeons had to do an emergency intubation.
And it goes on from there.
That’s the bad side of it. I got quite an education. But my story’s not unusual, and people shouldn’t think that it is.
The amazingly wonderful part of my journey included a powerful, respectful, and wonderful relationship with my gynecologic oncologist (my third oncologist) in Madison, who served as both my medical oncologist and surgeon. I’d had some great care and some not so great care along the way, by a number of different physicians and surgeons.
I went to Los Angeles for a consult with someone else because I wanted to “hit the long ball,” to take a chance on cure and not settle for an extended remission. It was a huge risk, but on the other hand, there wasn’t a lot that standard treatment had to offer me at that point. Though I had found a chemo that was incredibly effective, I didn’t want to rely on chemotherapy. I wanted to have surgery plus effective chemotherapy. I felt it was my best shot at a home run.
The surgeon in Los Angeles thought I had 12 tumors, and although I had “failed” chemotherapy, he agreed to open me up and “cryo” my liver. When he did … he discovered that I had only ever had one tumor in my liver and he froze it out. … This guy took a huge risk on me—this 38-year-old woman, mother of two little kids. And he saved my life. There are no words for the gift he gave me.