Sally
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At the age of 48, Sally was at the top of her game. An avid runner and mother of two young children, she soon came to realize, there are “no guarantees.” A routine mammogram led to a callback, which she thought was “no big deal.” She’d had callbacks before. But an excision of a benign cyst led to a diagnosis of “invasive lobular breast cancer… in multiple sites in both breasts” and her in lymph nodes. This “sneaky breast cancer” never shows up on mammograms. So, in a sense, Sally was lucky; that benign cyst may have saved her life. Sally, a nurse, always thought she’d be an active participant in her medical care but notes that she was in no position to make decisions when first diagnosed. Instead, she trusted her team at an academic cancer center.
As recommended, she had a bilateral mastectomy and opted for reconstruction, “to look the way I'd looked before.” She also had radiation and chemotherapy, which was not as bad as she had feared. She took tamoxifen for five years and then was switched to an aromatase inhibitor for 6 years, which caused a host of miserable side effects. As a 10-plus year survivor, she switched to an oncologist who agreed that it was reasonable to go back on tamoxifen. At fifteen years out Sally was still not fully comfortable with the lack of surveillance, having been told to watch for symptoms of metastases, as regional recurrence was highly unlikely. But the unlikely happened. Sally found a lump under her armpit that indeed turned out to be a regional recurrence, that required chemotherapy and a return to an aromatase inhibitor. But that did not stop Sally from completing a half marathon just five months after her last round of chemotherapy.
Sally’s first breast cancer episode spurred her to get trained as a patient advocate. If she and her physician husband were daunted by the process, she couldn’t imagine what it’s like “for people who have no medical background… [the] huge burden on patients and families.” And fifteen years later she had to put that training to her own use. Sally notes, her clinicians—when she finally got to see them—were wonderful, but she was frustrated that institutional changes in the intervening years seemed to privilege profits and brick and mortar enhancements over providing timely clinical care for worried cancer patients.
Reflecting on the more existential issues, Sally notes the two episodes of diagnosis and treatment were very different. The first time she had school aged children and recalls sobbing when “my kids would have a birthday... because I might not be here next year.” Mindful meditation helped her realize that “I'm missing right now, because I'm so worried about the future.” Focusing on the “here and now” took practice and got easier over several years of survivorship. When breast cancer recurred at age 63, Sally was at a different place in her lifespan. Her kids were successfully launched into young adulthood; she had fulfilled a major life purpose. But she is “greedy for more.” She wants to see how her adult children’s lives will evolve. She dreams of hiking into old age with her husband and is peeved “when people grumble and grumble about what a drag it is to get old,” noting, “I’m so thrilled to be old.”
Sally found a small lump under her arm and wondered whether an earlier breast cancer had returned.
Sally found a small lump under her arm and wondered whether an earlier breast cancer had returned.
I just felt this tiny little thing under my left axilla. Which is the side I had the initial breast cancer. So, I, you know, felt like such a tiny, tiny little thing for a couple weeks. I just thought, oh, it's nothing. I'm just being paranoid, as breast cancer survivors think. Then finally, I had my husband feel it, and he's like, "Well, it's something, I don't feel anything, but you should probably have it checked out." So, I went through my primary care doctor, and she said, "I don't, I don't see anything thing. But I don't want to be the one to make that decision." So, then she sent me to my oncologist. My oncologist said, "Oh, does it feel like anything? I think it is a cyst. It's very near the skin." You know, trying to reassure me. But she said, "We'll get an ultrasound." And so, the ultrasound comes back, and they said it's definitely not a cyst, so we will have to do a biopsy. So, you know, this-, of course, this takes about a month for all these appointments to happen. So, I'm trying to, like, keep my hysteria at bay, thinking, this can't be anything, it just can't. It had been 15, 16 years since my first bout.
Sally described some characteristics of “good” websites.
Sally described some characteristics of “good” websites.
I guess, I like to be on sites where there is like a university affiliated with it, or at least someone, I mean, these open chat rooms, that's where you get into trouble. And people just are posting stuff that's like, “That's not true.” You know and, and you don't know if there's any validity to what people are saying. So I like it where there's a, a moderator, is that what they're called? Who kind of checks in and makes sure everything is good or you know, just from reputable sources, which are usually affiliated with the university or a hospital.
Sally was surprised at how her emotions affected decision-making.
Sally was surprised at how her emotions affected decision-making.
And I did decide to go with a clinical trial. Which, you know, that was kind of interesting, too, because I really thought I would be much more involved in the decision making, but I, I really couldn't. I, I just couldn't deal with it. And so luckily, my husband, I said, "Research this clinical trial. Tell me what you think." Because I cannot make a decision.
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By that point, we'd had, had enough conversations, and I just said, "What can I do, but trust you?" You know. So, we did it because she said, "You take two drugs at once. You hit it really hard right away. It's really intense but you are done in four rounds." And so, I did it. And I just look back and think of that as an interesting piece, because I couldn't—I now get why people just can't make any decisions. They can't function. And you feel like, "Wow," you know, "Don't you want to participate in your care," and it's like, well, you're not in any emotional state to do it. At least I wasn't.
Sally found herself in a “weird zone.”
Sally found herself in a “weird zone.”
I just had no energy, achy, but I couldn’t sleep. So, it was like this just weird zone of walking around not knowing what to do with myself, and not feeling good enough to do anything but not feeling sleepy enough to allow myself to sleep. So, it-it just sort of wore on me.
Sally changed oncologists when she and the first one didn’t agree on which hormone therapy she should continue taking after many years.
Sally changed oncologists when she and the first one didn’t agree on which hormone therapy she should continue taking after many years.
Tamoxifen, all the way around. I felt good, my bones benefitted from it, and then they came out with the aromatase inhibitor and they wanted me to switch because they felt it was better. And so, I switched and that’s when my bones got worse and I felt lousy. And so, I stayed on it for six or seven years and I ended up switching oncologists because the person I was seeing wouldn’t let me come off of it and I said I am not going to stay on this. And, you know, I’ve been out ten years. I was feeling pretty confident. And he’s like ‘no, blah blah blah blah blah, statistics are’ and I finally switched oncologists who said ‘I think it’s perfectly reasonable for you to come off the aromatase inhibitors and go back on Tamoxifen. So, I did.
For Sally, getting a bad diagnosis was made worse by delayed communication.
For Sally, getting a bad diagnosis was made worse by delayed communication.
It had been 15, 16 years since my first bout. And then the guy who did the biopsy said, "You know, there is nothing-, there is nothing weird or abnormal about this, so, you know, we'll let you know." And by this time, it was right before the 4th of July, so this-, all these different appointments had taken up the month of June, and now it was like right before the 4th of July. He said, "Well, with the holiday, it'll probably take, you know, 5 to 7 days," because the 4th of July was thrown in there. So, OK, of course, it went to the full seven days, and at the end of the seven days, by 3 in the afternoon, I said to my husband, "I can't take it anymore. I have to know." And so, at 3 o'clock, I started calling because I thought, I can't let it go till 5 o'clock because-, because then it's another day, you know? And I thought, I have been so patient and-, but I really need to know, and I can't do this anymore. And so, I started calling, and there, I mean, it was just a fiasco, and I called the radiology clinic. She opened my chart and said, "Your result is in. I can see it in front of my eyes, your result is in, but I can't tell you the result." I said, "I know you can't but who can?" She said, "Well, call your primary care." Primary care said it wasn't in their chart. She said call your oncologist. It wasn't in my oncologist's chart. It didn't come up on my chart for my physicians. So, it got to be 5 o'clock and after, you know, two hours of this panic and frustration, I was like, okay, I'm going to have to wait another day. And I just was-, you know, just a heap on the floor, basically. Thinking I can't do this anymore. And so, at 7:30 in the evening, my oncologist called which at that point, it was very nice of her to call at 7:30 at night and it was nice that she, you know, dug deeper to try and get—I because I was telling them it's in my chart. The radiology person said it was in my chart, so how can you not see it? Why can't you go get it and find it? Make some phone calls, you know? So, she had done that, and she called me and said, "Yes, your breast cancer is either something—there's something we didn't get the first time, or it's something new, and we will never be able to tell you which of those two it is, but it's there."
Sally gives herself permission to “feel like crap” if she wants to.
Sally gives herself permission to “feel like crap” if she wants to.
When I was talking about how supportive my husband was, which he was very supportive, but it kind of brings up this thing that, I really struggled with, my husband's like, “you're going to be fine. You're going to be fine.” He was just, that was his mantra. And I would get so mad at him. It’s like, “you don't know that I'm going to be fine.” And, and I felt that way a lot. People were like, “stay positive.” And I was like, “well, I'm not. So,what does that mean? I'm going to die because I'm not positive?” I mean, it, things that you just don't anticipate these feelings of like, “well, I'm sorry, but I'm feeling pretty shitty today, and I'm not feeling very positive,” and it felt like you were going to be punished for that, because you weren't staying positive. So, finally I have a friend who's a psychotherapist, and she researched and found this study they had done, that it didn't make one hill of beans difference if you were positive or felt really lousy about your experience. And I had that up on my refrigerator to give me permission to feel like crap. And that was really very helpful to me.
Sally had mixed feelings about the motives for corporate support of the pink ribbon.
Sally had mixed feelings about the motives for corporate support of the pink ribbon.
I have really mixed feelings about it. I think, yeah, I mean, breast cancer should get no more publicity than any other kind of cancer, but because it's a female cancer, and I think businesses know that women tend to shop more, I mean, it's all a ploy. I mean, really how much does that really bring to breast cancer research, and how much does it really just increase their sales? I mean, when I saw the pink label on a soup can, I was like, “OK, all right. That's going too far, really?” So, I think they're playing us. They're using us.