After the Cure: The Untold Stories of Breast Cancer Survivors

“We Saved Your Life. Now Leave Us the Hell Alone”

39 2 “We Saved Your Life. Now Leave Us the Hell Alone” PAT G A R L A N D H A S little good to say about any of the doctors she saw either during or after cancer. When we interviewed her in her small studio apartment, eleven years had elapsed since she learned that a breast lump was malignant. Nevertheless, she vividly recalled that moment: To start out, it’s not routine, but they treat it as routine. I remember when I was diagnosed, and the doctor told me that I had breast cancer that afternoon. And when I stood up my legs went out from under me; they were wobbly. He said, “Oh, you’re having a terrible reaction.” Duh! He didn’t know what to do! You just told me I have cancer! My mother had it, so now I’m thinking that she died from it—yeah, my legs went a little weak. What did they think people did when you tell them they have cancer? Ignoring the fact that it took you three months to tell me that. We won’t even talk about how long it took them to diagnose me. My tumor ran from my nipple to my chest. And I went from November until January 31 before they, on January 31, told me that I had breast cancer. Other complaints focused on the period after chemotherapy ended. A drug prescribed to alleviate Pat’s hot flashes led to peripheral neuropathy , a condition that can cause tingling, numbness, and pain in the hands and feet: 40 “We Saved Your Life. Now Leave Us the Hell Alone” My hands do not work. At the very beginning after chemotherapy I couldn’t hold a cup. I couldn’t assure myself that I wouldn’t drop it. That’s how bad my hands were. But in order to diagnose what was wrong with me, they did what they call a nerve damage test. And as everyone knows, you’re not supposed to stick needles into your surgical arm. And of course this test involved needles. So what was extremely humorous today, but not then, was that after they did this test, my arm and hands swoll up. And I ran around Kaiser this particular day after I couldn’t figure out what was wrong, and when it swoll up I couldn’t fold my hand and make a fist. I couldn’t clap my hands in church. I couldn’t do any of the simplistic things in life. So I said, “You better go and ask what’s going on.” And I went in, and it took three doctors and one standing in a hallway to tell me that I had lymphedema. Pat’s immediate concern now was to treat the lymphedema, but she also had to find the cause of the nerve damage: “Because CMF1 does not cause peripheral neuropathy, everybody made me think that nothing was happening, that it was all in my head, that the pain and the fingers were not working.” To counter her self-doubt, she turned elsewhere for medical information: My girlfriend and I, we started researching, because my hands got more and more like they were paralyzed. I would have to have occasions where my friends would have to undress me. So we figured out, my girlfriend and I in the PDR book,2 that the drug can cause nerve damage. So we went to the oncologist, who happened to be on vacation, so we got his substitute and we showed it to him in the PDR book, because the nurses didn’t believe us. So we told him to drag out a PDR, to get one, and we’ll find it for you. So we did, and immediately the substitute doctor took me off the drug. Another doctor proposed an equally inappropriate therapy for her menopausal symptoms: The gynecologist, he was an older guy, a white guy. And I was trying to tell him, you know, how severe the mood swings and the hot “We Saved Your Life. Now Leave Us the Hell Alone” 41 flashes were and how miserable this was making me feel. And he was like, “What’s the problem? Why can’t you take estrogen?” And I said, “I’m a breast cancer survivor.” And he said, “Is that a problem? You need to be on HRT.”3 And I’m...