You didn't ask, but here is chapter two of my story. Thanks for listening.
Like Tobey, I also have a son and it was difficult to tell him at first. At the same time, it was an excellent learning experience. He is very fearful of the doctor and shots, so when I began to tell him about my surgery, I said, “Sometimes, people need to be hurt in order to stay healthy. For example, when we have to have a shot or take medicine that tastes terrible, we are doing it to stay healthy. I have a very, very high risk of getting breast cancer, so my doctors are recommending that I have surgery to take my risk away.” I was not very specific about exactly what the surgery was, I just called it “breast surgery” but when I came home from the hospital is was obvious that I had both breasts removed. I looked very flat. I gave the same talk to my students, to explain that I would be absent for the last three weeks in June 2009. In this case, I used the words “chest surgery.” I am a teacher and a parent, and I do not believe in lying to children. They see through it and later when they learn the truth, they are upset and angry, much the same way that adults feel when they are lied to. At the same time, depending on age and intellectual ability, I do not want to give too much inappropriate information. My son, who was 10 was told more details than I told my students, who are 8 and younger.
I might not have made this decision, to have a prophylactic bilateral mastectomy unless I had the unconditional support of my husband. He did not think we had a choice. When we spoke to the head researcher at Sloan, he told us that only 30% of women who receive the brca diagnosis actually do the surgery. My husband was amazed!!!! You mean 70% of women do not opt for this surgery? We were so amazed. We saw it as having no choice. Going for a mammogram and MRI 3-4 times a year would not make me feel better; I thought I would be in a constant state of worry. When will the cancer come? I decided I could not live this way. My husband agreed that I am not the kind of person who would want to live this way. Once, when I was speaking to a gay friend, he explained that it really is not a “choice” to be gay. In fact, most people would not choose this and many try to deny it for years. The word “choice” is interesting. I did not feel we had a choice. I think the real choice is that I chose the surgery because I thought the idea of chemotherapy was even scarier than this surgery.
At the time, I also did not know any one who had ever done this. I did know many, many people, too many people who had cancer and were involved in various treatments. Sloan Kettering told me that a Cancer Support Group might not welcome me, since I did not have the cancer diagnosis. I felt like an alien, a weirdo, and one friend actually said to me, “Who does this? I have never heard of this before.” Thank goodness for the FORCE website, where one woman in Georgia had written her phone number. She was the first person with brca I spoke to. FORCE led me to the Brca Umbrella, which led me to Tobey, who I was able to speak to 3 weeks after my surgery, when I had hoped to be feeling better, but I was feeling worse. Tobey was so reassuring and she was right here on LI where I live. Over time, I have met more women like me, but when I first wrestled with the diagnosis, I did not know anyone else. That is why I am happy to come out and tell my story. I can be that someone who will talk to people so that they do not feel so alone.
I made the decision in January 2009 to have the surgery, but I was putting it off until the near end of the school year, June 11. Waiting these 6 months was the hardest thing I ever had to do. I was terrified, horrified and petrified. I had never had surgery before! I still have my tonsils and my appendix. I cried almost every night alone in bed, after everyone had gone to sleep. It was difficult to go to parties and be with very happy people. It also put things in perspective for me. Why are people complaining about the weather? I have to cut my breasts off! Why is my colleague arguing and yelling? I have to cut my breasts off! It felt like I was in a Charlie Brown episode; when the adults speak it sounds like, “Whomp, whomp whaa…” As Tobey said before, it really did help me to put things into perspective.
Another way I chose to cope with this was to have a photographer take pictures of me. Luckily I have a wonderful friend who is a professional photographer and I could not believe how lovely she helped me to look. I had never thought about posing nude before, but my friend really made me look great and I had a huge amount of pictures of myself and my breasts. I told my friend all women should do this; knowing how great you can look no matter how old you are is a huge boost for your self-esteem.
People’s reactions were very interesting. Most women said, “I think you should do it.” Most men said, “Why don’t you wait for cancer?” Some people avoided me like I was their worst nightmare. I understand this; I was my own nightmare. Some people couldn’t even look at me. One colleague, my age, admitted “I have never had a mammogram before.” ( I think I wanted to put her head through the wall and say, what the fuck are you waiting for?) I decided that once I was through this and people saw that I was ok, that they would return to me; I tried to be forgiving about people who said silly things or tried to talk me out of it. I pleaded with anyone who would listen to look at the websites I was looking at. Hardly anyone did. The friends and family who did were few, but I really appreciated their input, because in the end, they agreed that this was the right thing to do.
What comforted you during this time of need? I had the support of my husband, son and father. One of the most comforting people was one colleague in particular, who had breast cancer and was about 4 months ahead of me in her journey; she also opted to have a bilateral mastectomy with the same reconstruction. She was so strong and brave. She coached me all the way. She let me “see” and “touch” each result during each stage. I think when you have cancer, making this decision is easier. I am not wishing I had cancer, I just think the decision was more clear- cut for these women and there are a lot of support groups for them. But I was not going to wait to get cancer; that was what my decision was all about.
In the end, this event has had an extraordinary effect on me in more ways than one. I learned that I am strong and brave, even if I’m crying. This kind of decision really tests your ideas about your own feminist attitudes, not to mention body image. On an intellectual level, I know I am more than my breasts; at the same time, I loved my breasts, they were beautiful. At age 51, they were one part of my body that never gave me trouble. I would have fixed my nose, my stomach, my skin, my double chin, but never my breasts. In so many ways this was unbelievably ironic.
Now that I am past the worst of it, I can enjoy life more; I can wear clothes that I haven’t been able to wear since I was in my 20’s. I do not have to wear a bra unless I want to, or am exercising or lifting heavy things. 5 weeks after my surgery, I saw Paul McCartney at Citfield two times! Once with a friend and once with a different friend and my son! It was an incredible experience. Now, I find comfort in my family, my friends, and music and having fun. People tell me that I look great. It is amazing that something so traumatic can happen to a woman and they can end up being ok. I enjoy seeing people I haven’t seen in a long time because they tell me how amazing I look! I think a woman will never get tired of hearing that.
Now I spend more time with things and people who I am guaranteed to have fun with. I go to concerts, I go to the city on the train, I play The Beatles Rock Band game with my son a lot. I hope to improve my relationship with my brother. I also hope to speak about this experience, so no one has to feel so alone, as I did.
I also am working on an outreach/fund raising event with Tobey, on Oct. 16th. This was the best idea to help me feel better; feeling like I was doing something proactive to make other people's lives easier.
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