Alice
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Alice is an actor and was playing a woman recovering from breast cancer when a fellow actor found a real lump in her breast during an intimate scene in the play. Alice “didn’t believe it would actually be cancer” but to her surprise was diagnosed with breast cancer at age 42. Alice went in for a mammogram and biopsy, was diagnosed with invasive carcinoma and based on her doctor’s recommendation underwent a bilateral mastectomy and reconstruction. Seven years later, Alice found a lump in her other breast and was diagnosed with another primary breast cancer. She wishes that she had known then that “you can have a bilateral mastectomy and you can still have cancer again.” Alice has now had breast cancer four times and was most recently diagnosed with metastatic disease.
Even from her first diagnosis, Alice has never been secretive about her breast cancer and was “proudly bald,” much to the “horror” of her then 6-year-old. Transparency with her children has been very important for Alice, since her first diagnosis over a decade ago. Over the course of her four diagnoses, Alice’s treatment has consisted of different combinations of chemotherapy (for which her mother was always by her side), radiation, and endocrine therapy. Though chemotherapy was hard, overall, Alice found treatment to be “entirely tolerable” with few side effects other than lymphedema. Alice received her care at a research hospital and had great confidence in her oncologist, so she “volunteered for every study that there was” hoping her efforts would eventually help someone else. Overall, Alice’s experience with her oncologists have been great. When she was first diagnosed, her oncologist told her “you did not do this to yourself” and Alice “held on to that because everyone wants to tell you how to cure your cancer.”
To cope with living with cancer, Alice joined a dragon boat team for breast cancer survivors which has been hard work, fun, and “one of the most wonderful experiences” of her life. Exercise has played a big part in Alice’s recovery, both socially and emotionally, and has been a nice way to “feel like you can take care of yourself for once.” Alice has learned how to accept help from others and has found solace in the support of her husband, children, other family members and friends. Alice recently started volunteering for an organization where she speaks with people across the country who have breast cancer; those conversations are therapeutic for all, and Alice feels those she speaks with “do as much for me as I'm supposed to be doing for them.” She has witnessed so much bravery and it has reminded her that there’s a whole community of people who care. After Alice’s third diagnosis, she realized she needed professional help. She connected first with a social worker, which was “so, so helpful,” and then later with a psychiatrist who has “made a world of difference.”
Alice continues to be regularly screened and her scans have been good until recently. The news that her oncologist was unhappy with her most recent scans after having been stable for two years “was almost like getting a diagnosis all over again.” This diagnosis has helped Alice realize the importance of doing “everything that I wanted to do.” Alice recently read through The Swedish Art of Death Cleaning, which has helped her reflect on her life and think about “what it is that you are doing and want to be doing.” As a result, Alice started making a list and it includes spending more time with family and less time with work. For people in a similar situation, Alice recommends you “find people” and talk to them – talk to other survivors, professionals, seek second opinions and whoever else you need to, because “people want to help!” Alice also wants others to remember to keep moving because that’s “what's kept me going.”
Alice feels unsure about the advice she got from her doctors.
Alice feels unsure about the advice she got from her doctors.
What I’ve discovered with all of this, sometimes they're doing it because it's easier for them. And you really have to be careful of that. And ask for what you want and say, “this works better for me.” But, of course, at the time, you're scared and you don't know. And you’d like to trust that they know what they're doing, but there's a lot to be said for second opinions.
Alice didn’t realize one of her treatments was only partly covered by insurance.
Alice didn’t realize one of her treatments was only partly covered by insurance.
This hospital served me papers because I did not know that my radiation was only 80% covered. And they sent me this ridiculous bill, which I just kept putting under papers and things. And then, finally, I get this very legal looking thing saying you're being sued by this hospital. I was like, “Wait a minute!”
Alice joined a dragon boat team after receiving her metastatic diagnosis.
Alice joined a dragon boat team after receiving her metastatic diagnosis.
Then when I got my most recent metastatic diagnosis. I have been doing really well. The treatment has been, it's entirely tolerable. Really nothing symptomatic at all. I have a little lymphedema but lots of people have lymphedema. I joined a dragon boat team for breast cancer survivors, and that has been one of the most wonderful experiences of my life, and I never would have had it if I hadn't had cancer. Just this amazing group of fierce women that are athletes. And we all support each other. And we have a lot of fun. And we work really hard. So that's been very positive.
Alice looked for emotional support from a professional after her third diagnosis.
Alice looked for emotional support from a professional after her third diagnosis.
But the most, the thing for me that was the most impressive was when I got my third diagnosis. I said, "I can't do this myself. Somebody - I need help." And I picked up the phone, and I called and I said, "There's got to be a psychiatric department. There's got to be support somewhere." I left a message on a voicemail, and I was not called back for days. When I was they said, "There—we don't have—there, there are no bookings. We're completely booked. We can't see you." And when I switched hospitals, they were so much about the support. I can go see a—they assigned a social worker to me. And she came to every single one of my treatments, she called me once a week, and she said, "Do you want to see me?" She talked to my kids, talked to my husband, and she talked to my mother. It was just—it was so, so helpful. And then, with this diagnosis, I was like, "OK, get me a shrink." I got to have a nice visit with the psychiatrist, but I haven't seen her for a while because I've been doing well, but that was the main difference. What really was that kind of having someone to talk to.
Alice says that more people need to know about vaginal lubricants and moisturizers.
Alice says that more people need to know about vaginal lubricants and moisturizers.
I went to a conference on survivorship and it was so interesting because they were talking about the BRCA gene, different treatments and meditation, and they had all just this panel of these totally distinguished medical professionals talking about all of these different things. And the one that I just loved was the gynecologist. She was so good and so, you know, she was just use it or lose it, you know? You just, you have to, so that was one of my lists. I'm going to have as much sex with my husband as I can. He's, I’m going to wear him out.
[LAUGHING]
But she was also very practical, you know? She said, “Not just lubricate, but moisturize.” Who knew? I was like, really? There’s-? And sure enough, I go to the drugstore. And there's a whole section of vaginal moisturizer. And I thought, “Well, how did I miss that?” Because it's something that people don't talk about, and I was with one of my teammates and she was the same way. She was, like, “oh.” So, we've been expounding the necessity of moisturizer.
Alice says sex with her husband is a life-affirming force of joy.
Alice says sex with her husband is a life-affirming force of joy.
I went to a conference on survivorship and it was so interesting because they were talking about the BRCA gene, different treatments and meditation, and they had all just this panel of these totally distinguished medical professionals talking about all of these different things. And the one that I just loved was the gynecologist. She was so good and so, you know, she was just use it or lose it, you know? You just, you have to, so that was one of my lists. I'm going to have as much sex with my husband as I can. He's, I’m going to wear him out.
[LAUGHING]
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For me, it's absolutely like a life-affirming force of joy and being able to be intimate with my husband, who’s been through so much. It's just, I highly recommend making the time and even if, I mean, how many things do you do that you may not necessarily want to do, but you feel so good afterwards? So, think of it that way.
Alice looked for emotional support from a professional after her third diagnosis.
Alice looked for emotional support from a professional after her third diagnosis.
But the most, the thing for me that was the most impressive was when I got my third diagnosis. I said, "I can't do this myself. Somebody - I need help." And I picked up the phone, and I called and I said, "There's got to be a psychiatric department. There's got to be support somewhere." I left a message on a voicemail, and I was not called back for days. When I was they said, "There—we don't have—there, there are no bookings. We're completely booked. We can't see you." And when I switched hospitals, they were so much about the support. I can go see a—they assigned a social worker to me. And she came to every single one of my treatments, she called me once a week, and she said, "Do you want to see me?" She talked to my kids, talked to my husband, and she talked to my mother. It was just—it was so, so helpful. And then, with this diagnosis, I was like, "OK, get me a shrink." I got to have a nice visit with the psychiatrist, but I haven't seen her for a while because I've been doing well, but that was the main difference. What really was that kind of having someone to talk to.
For Alice, clearing out her stuff is a chance to reflect on her life.
For Alice, clearing out her stuff is a chance to reflect on her life.
I’m making my lists, you know? I started clearing things out, doing them. You've heard of ‘The Swedish Art of Death Cleaning’. It's basically the practice of, it's kind of Marie Kondo-y – just getting rid of stuff so that when the time comes, people don't have to do it for you. And it's also a way of reflecting on your life, and what it is that you are doing, and want to be doing. So, since this is relatively new, the list isn't very long yet, but I'm coming up with some good things. I mean just wanting to do the things that are important to me, you know? Spend time with my family. Enjoy, I’m spending less and less time with work.
Being part of a dragon boat team brings Alice joy and satisfaction.
Being part of a dragon boat team brings Alice joy and satisfaction.
I joined a dragon boat team for breast cancer survivors, and that has been one of the most wonderful experiences of my life, and I never would have had it if I hadn't had cancer. Just this amazing group of fierce women that are athletes. And we all support each other. And we have a lot of fun. And we work really hard. So, that’s-, that's been very positive.
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The captain of our team, our dragon boat team, is the head of the exercise program at [LOCATION]. So, they are all about, they have a whole yoga practice, and meditation, and acupuncture, and massage. I mean, she's, it's amazing. And so, I do a boot camp once a week with her, and then we do our on-the-water practices three times a week, and there's a gym here in my building. So, and we're totally encouraged to be athletes and really push ourselves. And it makes so much of a difference. I mean, I know I was—Monday when I got the news that the PET wasn't good, and I was staying overnight at my mother's the next two nights because she needed someone with her. And so, I really wasn't focusing on it at all. And then Wednesday night, I got out on the water, and it was a beautiful night, and they kicked our butts. It was so hard. We're getting ready for a race. And we were just pushing, pushing. And at first, I thought, I can't do this. I, and by the end of the night I was just so happy. So, all of those endorphins and things.
Alice felt much of the advice she received was simplistic.
Alice felt much of the advice she received was simplistic.
Everyone wants to tell you how to cure your cancer. It's just amazing. “Cut out dairy.” “Just eat kale.” You know, there’s so much good advice. But if that were the case, then nobody would have breast cancer. We would all be not eating dairy and just eating kale.
Alice finds camaraderie on a dragon boat team.
Alice finds camaraderie on a dragon boat team.
I joined a dragon boat team for breast cancer survivors, and that has been one of the most wonderful experiences of my life, and I never would have had it if I hadn't had cancer. Just this amazing group of fierce women that are athletes. And we all support each other. And we have a lot of fun. And we work really hard. So, that’s-, that's been very positive.
---
The captain of our team, our dragon boat team, is the head of the exercise program at [LOCATION]. So, they are all about, they have a whole yoga practice, and meditation, and acupuncture, and massage. I mean, she's, it's amazing. And so, I do a boot camp once a week with her, and then we do our on-the-water practices three times a week, and there's a gym here in my building. So, and we're totally encouraged to be athletes and really push ourselves. And it makes so much of a difference. I mean, I know I was—Monday when I got the news that the PET wasn't good, and I was staying overnight at my mother's the next two nights because she needed someone with her. And so, I really wasn't focusing on it at all. And then Wednesday night, I got out on the water, and it was a beautiful night, and they kicked our butts. It was so hard. We're getting ready for a race. And we were just pushing, pushing. And at first, I thought, I can't do this. I, and by the end of the night I was just so happy. So, all of those endorphins and things.
Alice values the information she gets through second opinions.
Alice values the information she gets through second opinions.
What I’ve discovered with all of this is that sometimes they're doing it because it's easier for them. And you really have to be careful of that and ask for what you want. And say, “This works better for me.” But, of course, at the time, you're scared. And you don't know. And you’d like to trust that they know what they're doing. But there's a lot to be said for second opinions.
Alice looked for emotional support from a professional after her third diagnosis.
Alice looked for emotional support from a professional after her third diagnosis.
When I got my third diagnosis, I said, “I can't do this myself. Somebody, I need help.” And I picked up the phone and I called. And I said, “there's got to be a psychiatric department, there's got to be support somewhere.” And, I left a message on a voicemail. And I was not called back for days. And when I was, they said “There are no bookings. We're completely booked. We can't see you.” And when I switched hospitals, they were so much about the support. And I can go see --they assigned a social worker to me. And she came to every single one of my treatments. And she called me once a week. And she said, “Do you want to see me?” She talked to my kids. She talked to my husband. She talked to my mother. It was just so helpful.