“Patient is a pleasant 37- year old woman.” So says my chart. I am 43 years old now. I was diagnosed with Stage IIIc ovarian cancer in March of 2006.
I remember it was late February, on a Saturday night, and I felt as if I might be developing a urinary tract infection. I felt just a twinge as I lay in bed. I went by my OB/GYN’s office that Monday and left a sample. I had recently been treated with antibiotics for strep throat so I thought it would be odd if I did have a UTI. On Thursday or Friday of that week I spoke with the doctor. She wanted to know why I had thought I might have a UTI as my sample was clean. I told her something wasn’t right, and she had me come in that afternoon for a pelvic exam. She felt something on the ovary and sent me for an ultrasound. I called for the appointment from her lobby. But, upon being told that they didn’t have anything available for a couple of weeks, I went back to the doctor’s office and had her make the call. From there, many things happened quickly.
I was lucky. My OB/GYN jumped right on it, and I had surgery with a top gynecologic oncologist less than five weeks later—the day before my youngest son turned three. I was in surgery for 7.5 hours. I had a complete hysterectomy, appendectomy, splenectomy, bowel resection, my diaphragm scraped and my omentum removed. Then, I developed a PE (pulmonary embolism). I had no idea what day it was until they were ferrying me via gurney over to the hospital in the night to have a CT scan and I heard the orderlies talking about the NCAA men’s basketball finals which I had obviously missed.
After a week’s stay in the hospital, I had a catheter inserted, and began my “triple therapy” chemo regimen—3 drugs given over two days in a three week cycle. Day 1, long day of chemo. Day 8, short day of chemo. Then I got a week off except for having blood work done. I went through 4 rounds before I had recovered much from the surgery. I tolerated the regimen pretty well although there were a few trips to the ER during that time.
My family coped, and almost everyone I knew pitched in to help with the kids or meals. One friend organized a henna party where an artist painted a henna tattoo on my bald head. I hooked up with Planet Cancer, an online group for the “under 40” crowd, and attended one of their retreats. There is not a lot of great data or support for those in my position of having ovarian cancer at an early age.
Cancer is present in my family. My maternal grandmother had ovarian cancer in her seventies, and my father’s sister had breast cancer in her forties. The January before I was diagnosed I found out that my paternal grandfather’s nieces, my father’s first cousins, were positive for the BRCA1 gene; they both had breast cancer while in their thirties. Nothing was found the first time they were tested, but one of them participated in a study at Oxford which eventually found our deletion. I was in the process of making calls about being tested when I was diagnosed. I have since been tested for BRCA1 and, not surprisingly, I have the gene. I had always thought I’d have breast cancer, but I actually didn’t quite understand the link with ovarian cancer.
I was all set to have a bilateral prophylactic mastectomy in November 2007. Unfortunately, my routine CT scan at the end of August found a recurrence of the cancer in four lymph nodes. I entered a clinical trial with Avastin for a few months until the CT showed breast cancer. So, I had to stop the trial and have the mastectomy. I was diagnosed with Stage 2B breast cancer with lymph node involvement. Then I had more chemo.
Once ovarian cancer recurs, it is hard to get rid of it. In 2009 I participated in another clinical trial, this one with PARP inhibitors. They worked quite well for more than 15 months before something mutated. When looking at what to do next, my oncologist thought that Doxil would be a good choice. I took Doxil for 4 months and was responding well. Then problems developed at the world’s one and only manufacturer of Doxil, and it became unavailable. To make a long story short, there is no Doxil to be had in the entire world and won’t be for quite a while. I am currently waiting to hear what will come next.
While my health, my family and what is left of my career (I am a government policy wonk, now content to stay at the staff level) have taken up most of my energy over the last (almost) 6 years, I have become involved in trying to raise awareness of ovarian cancer.
I got the news of my first recurrence in September 2007. It was ovarian cancer awareness month and I had painted my toenails teal, the color of ovarian cancer awareness. I showed up at the elementary school bus stop and the other mothers were a little surprised; I was not known for wearing toenail polish. I explained why, and, by the end of the week, they all had Teal Toes. The idea spread through the elementary school and others in my circle as support for me. Given all of the conversations I was having with people who noticed my toes, I realized that this was a good way to spread awareness.
Teal Toes is a non-profit organization that sends out symptom cards to anyone who requests them. The cards are wallet-sized, and can be handed to anyone you meet. We have sent out tens of thousands. We also have a virtual presence with the Teal Toes website and through social media. People use the Teal Toes idea to raise money for local ovarian cancer organizations through pedicure parties and the like. Many people, including men, paint their nails to show support for family, friends and colleagues going through treatment.
While I continue to hope that new therapies will eradicate my cancer, I know that there are treatments that can keep me going for a number of years. I will spend that time raising my children, loving my husband, and being a productive member of society.