Update 10/13/15: Annie Goodman passed away in December 2014. In this blog post she wrote for our 2014 Hear My Voice Blog Carnival, she discusses the realities of a metastatic triple-negative breast cancer diagnosis, and living her life with more hope and less fear. Discover the inspiration Annie provided to family, friends and others living with MBC in the post below.
Maybe it’s all in my head. I can’t have brain tumors. Maybe I’m just depressed and need psychiatric help.
After discovering a lump, I was diagnosed with stage IIB triple-negative breast cancer on February 29, 2012. I was 30 years old with no family history of cancer. I had a mastectomy, reconstruction, four rounds of Adriamycin and Cytoxan and 12 rounds of Abraxane chemotherapy. While in treatment, I found out I had the BRCA1 mutation. On November 30, 2012, I finished radiation and my doctor declared I was in remission.
I went back to normal life. I enjoyed having a healthy appetite again. My hair grew back. I went back to work full-time. Having cancer was no longer all I could think about. It started to become a memory, and I loved life as a survivor.
Due to the BRCA1 mutation, I had to go for ultrasounds of my ovaries every six months. My first screening was perfect. In November 2013, I went for my second ultrasound, and as soon as I got into work, my doctor’s office called: I needed to come in immediately. My right ovary was 11 cm. A normal ovary is 3 cm.
A week later I had a total hysterectomy. I was upset about losing my fertility at only 32, but I knew deep inside that removing all my gynecological organs was necessary because this cancer was so aggressive. It turned out that I did not have ovarian cancer. The triple-negative breast cancer had metastasized to my ovaries.
After more scans, my doctors found the cancer had also traveled to my lungs. While on the hunt for an appropriate clinical trial, I started feeling very ill. I was extremely tired, experiencing headaches, nauseated, having night sweats, panic attacks, bouts of confusion and finally, peripheral vision loss.
I called my oncologist who immediately sent me to the emergency room. I knew what the scans were going to find. I was diagnosed with six brain tumors. In that moment, I thought I’d be lucky to live long enough to enjoy the summer.
I was immediately put in the ICU, on seizure medication and a high dose of steroids. On January 8, 2014, I had a craniotomy and three brain tumors removed. After surgery I received a dose of chemotherapy, and then started whole brain radiation. WBR remains the most difficult treatment I have had so far. The high doses of steroids, weight gain, insomnia, extreme fatigue, walking with a cane and growing facial hair was not how I planned on spending the snowy winter in New York City.
Since that initial brain treatment, I have restarted chemotherapy again and have had gamma knife surgery two times. Just 10 months later, I can walk independently, have lost the steroid pounds and with the help of occupational therapy, my field of vision is improving. I will never fully regain my peripheral vision on the left side again, but I have learned how to live with it.
This is the reality of metastatic breast cancer. Many of us live with deficits. I live with permanent vision loss and baldness, and pain from constant injections of Neupogen to sustain my immune system.
But the most important thing to remember is, I am LIVING! I breezed through the summer. I went to concerts. I accomplished my goal of meeting Derek Jeter. I received chemotherapy. I went on weekend trips and vacations.
I am feeling significantly better than I did in January. I still fear my upcoming scans. I wish I had x-ray vision so I could tell if my insides match how I feel on the outside.
Being told you have aggressive, metastatic triple-negative breast cancer is terrifying. But I am living my life. And I am choosing to do so with less fear, and more hope for my future. My hope is to spend many more summers taking weekend trips and vacations. I am willing to do whatever it takes to live.
Fighting stage IV breast cancer is Annie Goodman’s job. She is an ambassador for the Triple Negative Breast Cancer Foundation. Annie is also a journalist, co-host of the Stupid Cancer Show, a New Yorker and a fan of the Yankees, Jets, Knicks and Isles. Read Annie’s Tumblr blog and follow her on Twitter at @annieg917.
Visit lbbc.org/hearmyvoice to read the other posts in our series.