Brenda, a retired interior designer living on the tony Upper East Side of Manhattan, was used to things going her way. A cancer diagnosis at age 58 forced her to make some tough choices.
At age 50, my gynecologist started giving me the CA-125 test to get a baseline. It was just what he did. I didn’t realize at the time how important that would be. When I was 58, the numbers doubled, so he sent me to get tested. Nobody said anything about cancer to me, so I wasn’t worried. I had an MRI, which showed some blood flow to my ovaries. The surgeon said it probably wasn’t cancerous, but that I should have them removed. I still wasn’t really worried. When I woke up in recovery after the surgery, my husband told me that I did, in fact, have cancer. But I think knew I had cancer before I heard the news. It just seemed to be headed in that direction.
I didn’t panic. That’s not what I do. But the hardest decision was figuring out what to do about the cancer. One doctor said to have a second surgery immediately, another was less urgent. One doctor said he could put a port in during surgery. I didn’t want that— I hadn’t been staged yet so we didn’t even know what I would need. But he wasn’t happy about my decision and thought it should be done. With a lot of this you begin to realize that you don’t really have many options.
Getting Through It
I was scheduled for a full hysterectomy three weeks later. Then came Carboplatin and Taxol chemotherapy a few weeks after that. It all happened so fast. I was just numb. The doctor would say “Brenda, sit down,” and I sat down. “Brenda, wait over there,” so I would wait. I felt that I was in good hands, but I had no physical symptoms, and no family history of cancer so it was all sort of surreal. Cancer was a death sentence in my experience. It was a horrible thing to have.
Luckily, I have a very good husband, and that helped tremendously while I was recovering. But he was mostly out of town, having just started a new job. We had bought a new apartment there, but I stayed in New York because that’s where my doctors were. So, I wound up alone most of the time. He would come up on weekends to take care of me, but I really didn’t mind being alone. I even preferred going to my chemo treatments alone.
The chemo treatments weren’t too bad. I had a total of six infusions. I would do them either on a Thursday or Friday, then my husband would come home for the weekend and I was okay by Monday. But by fifth infusion I was worn out. The first time, I was so worried about it, but it wasn’t too bad, until I lost my hair. Otherwise, I wasn’t nauseous, and was still standing.
The Other Shoe
Somehow you get through it. I was a maniac about not catching a cold or other virus and would do things like wear a face mask and not eat berries. Otherwise, I mostly read. I had a couple of friends who would come over, and my doorman would sometimes take me out for a walk.
I took advantage of some of the integrative medicine options that Memorial Sloan Kettering offers to all cancer patients, like nutrition and massage. It was a lovely place to be. I would go there for a massage before my chemo appointments, in an environment where there were others going through the same stuff I was dealing with. It was very private but comforting.
After I was done with all the treatment, I had the BRCA test and the results were positive. I had an 87% chance of developing breast cancer. That seemed like a no-brainer—I wanted my breasts removed as soon as possible. Given my personality, I knew I wouldn’t be at ease about it until I had them removed. One doctor suggested I wait and see, but I saw no point in waiting. So, I had a prophylactic bilateral mastectomy with reconstruction, which was an easy decision. I’ve never waivered or had any second thoughts about that decision. But it meant I wound up having two major cancer surgeries in the space of a year. I’ve since blocked a lot of it out, but I was in a fog. So much happened to my body in such a short time.
Not My Fault
I think I worried about reoccurrence, something I didn’t have any control over. But the possibility of breast cancer seemed like something I could control. It was a painful process, and while I don’t focus on the pain, getting undressed is a daily reminder. My breasts don’t look real and don’t have any sensation. But it never entered my mind not to do it.
I used to worry that I might have been responsible for my own cancer. I had had an abortion early in life. At the time, my boss knew where I was going and said to me one day, “Do you feel bad you just killed somebody?” It really shook me up, so I wondered if I was being punished for that. In some way, I felt that I deserved the cancer for disregarding that embryo. A doctor and member of the American Cancer Society leadership who I spoke with about it looked at me in shock and said, “I don’t think that had anything to do with it.” But still I felt guilty. Once I found out I was BRCA positive, I realized that I was a time bomb waiting to explode. It wasn’t based on anything that I had done to myself. It was just genetics.
The BRCA gene must have been on my father’s side of the family. No one in my mother’s family has it. I’ve been estranged from my father pretty much all my life, so I know nothing about his family’s health. But I never knew you could get it from your dad.
Relationships with family and friends are so complicated. You learn a lot about who your friends are when you get cancer. Some of them respond to you like they think it’s contagious!
Ongoing Anxiety
I also worried a little about how my husband would respond to me after all the surgeries were done. I had heard so many stories of husbands leaving their wives when they became sick, or sex lives being destroyed. It actually made it easier that he was away most of the time and didn’t have to see me so sick.
These days, I still get anxious about the testing and wonder what they’re going to find. You hear stories of women who’s ovarian cancer comes back a second or third time. It makes my stomach turn—it’s such a trauma. So I get a little crazy about it, which the doctors know, so they try to keep me from getting tested too often. A year ago, one of my doctors told me to please stop worrying, and that I had the same chance as anyone who has never had cancer.
The CA-125 test isn’t great, but I think it saved my life. It measures a cancer antigen in the bloodstream that is related to ovarian cancer, but it can go up and down a lot based on other things too. Mine had been pretty stable for years before my diagnosis. And then it doubled. It was really helpful to have that baseline information and I’m sure that helped me detect my cancer before it became serious.
Mentors and Mentoring
Now it’s nine years later and I’ve been dealing with lymphedema from my ovarian cancer surgery. The doctors don’t understand it, because all of a sudden, my lymph system went out of control and one leg swelled up. It might have been related to a case of the shingles, but no one really seems to be able to give me any answers. Or give me any solutions. I wear a full-leg compression stocking most of the time. And that gets hot in the summer.
I try not to focus on my own cancer now. Instead, I volunteer at the hospital where I was treated to mentor newly diagnosed patients and help them deal with everything they have to think about when they get diagnosed. I was lucky to have had a mentor who was there for me and could answer my questions. I’m sure it helped with my fears.