As a cancer survivor and advocate, I have gotten the calls that we survivors hate: calls from someone we don’t know who says that a mutual friend told them to call, and friends saying they have been received a diagnosis. I am always ready when the phone rings.
For the past 25 years I have lived in the shadow of breast cancer. Since then, I have been both a willing and unwilling participant in the cancer story as it has unfolded in this country. It wasn’t something I wanted to do; it was just timing. During those years there have been times when I celebrated progress and bemoaned yet another finding that didn’t pan out to be the great answer we wanted.
Through it all, I have gotten the calls that we survivors hate. It’s either someone we don’t know who says that a mutual friend told them to call — or as in the last two calls, friends saying they have been received a diagnosis. One friend called to invite me to her hat party in preparation for losing her hair to preoperative chemo.
It’s hard to take these calls, particularly when something happens that’s either really good or really bad, but the person doesn’t have enough experience yet to know what it means. For example, when hat-party girl began chemotherapy, she was excited that the tumor was noticeably smaller. But she was disappointed that it was still there.
I was elated for her. It meant she was a “responder.” You learn quickly in cancer that either you respond or you don’t and the results will be quickly tied to prognosis. When she called to tell me that she could feel the difference in the size of her tumor, she didn’t get why I was whooping and hollering. It continued to shrink until it was all but gone by the time she had surgery. They even reassessed her tumor and decided it was not inflammatory.
She then went through treatment with another drug that has already gone by the wayside. She learned she carries the BRCA 2 gene, knowledge that has caused her great pain because of her young daughter and the risk it means for her. But her response to the chemo means she has a much better prognosis than was originally thought. We celebrated.
Then a month ago I got a second call from an old friend — a friend, in fact, who was part of my support when I went through breast cancer. She moved to another state with her family shortly after I finished treatment and we had only had sporadic contact in the past decade. Then she too was diagnosed with what the docs said was inflammatory breast cancer. I was devastated. It was one of those calls where she didn’t know enough about her diagnosis to be worried yet and at one point in the discussion, I asked, “has anyone used the word inflammatory?”
“Yes,” she answered, “what does that mean?”
How do you answer that question? Years ago, the new drugs now available were still the light in some researchers’ eyes. I just responded that it meant they didn’t want to wait around before beginning chemotherapy, so she wasn’t surprised when she began chemo before all her tests were back. My last call from her came after her oncologist told her she needed her to come back immediately for the infusion of another drug called Herceptin because she was positive for HER 2. What did that mean, she wanted to know?
I said it gave her another big gun in her arsenal and they wanted to use it quickly. And it was clearly a good move. In only a week her tumor was noticeably smaller and her oncologist was beginning to say it wasn’t inflammatory, just a big tumor that was now on its way down in size. It was a good day.
I am always ready when the phone rings. But at the same time, one should be prepared because sometimes the callers are not happy to talk to you as they were talked into it. One call I got was just such a case. I could hear it in her voice. This was a young mother of two children ages 2 and 4.
“What do you know already?” I asked her.
She told me that she had found a lump that was about the size of a walnut and the doctor said she needed a mastectomy, which she was willing to have. But she was not going to do chemo no matter what anyone said. She had found some herbal cure and had begun taking that.
“OK,” I said.
“Wait, aren’t you supposed to talk me into it?” she replied.
“Not at all,” I said, “If you don’t believe in what you are doing, it will be awful and I wouldn’t be surprised if your body knows it. But you need to talk it over with your husband.”
“Why?” she snorted. “It’s my body.”
“Absolutely,” I responded. “But he is going to have to raise the children if you die.”