Cancer and Knowing Yourself
Living with breast cancer can change a person’s life in many ways. Long after treatment is over physical, cognitive, and psychological changes remain common. These changes can affect day-to-day life, relationships with others, personal priorities, and plans for the future. Some people we spoke with said such changes made it harder to return to the life they had before cancer. Others talked about developing a new sense of identity or a new pathway forward.
Returning to Normal
A number of people described how regaining the life they had before their cancer diagnosis was essential for “moving on” from the trauma they had experienced. Others talked about reconnecting with their earlier lives, creating a sense of continuity between before and after cancer. As Kim put it, “I'm the same person having a really radical set of experiences, and I'm that same person who's now going through all these different experiences.” Some people said cancer never really altered their identity. As Maria H. recalled, “In no moment did I feel sick, or did I look sick or did I look like cancer. I would say to myself, 'You, cancer? No, you don’t have cancer.'" Casey says he held on to the knowledge that even though he got “a woman’s cancer” in the breast tissue that remained after he transitioned from a female to male gender identity and body, he’s “still transgender.”
Peggy wants to look and be like her old self.
Peggy wants to look and be like her old self.
I'm looking forward to being back to my normal self. I want to be as close as I was before this all started, at least appearance-wise. Like, you know, with the hair and the reconstruction, I just want to look as close as possible to what I was before this all started. Because then I feel like I'll be back to normal and then I can put it all behind me and just move on.
Nikki says cancer hasn’t changed who she is.
Nikki says cancer hasn’t changed who she is.
I don't think it changes who you are. I think it exemplifies who you are. I have a strong faith. I believe God is in control —and that’s—I’ve had to live on that. That's made me so much stronger, cancer doesn't get credit for that. There's no way. The positive things that it brings out, that's not cancer. That's who we are, and I've always been a positive, energetic person. And I think that's just exemplified now.
Becky doesn’t want cancer to change her self-image as a healthy person.
Becky doesn’t want cancer to change her self-image as a healthy person.
I was an incredibly healthy person leading up to this. And it's funny. I still don't even think of it as an illness. It's hard to say it like, when I was sick. Or, I just don't think of it that way. And I still think of myself as an incredibly healthy person who had this, I guess kind of major bump in the road. But I don't get colds. I don't get headaches. I, so this just came crashing in. And I don't always want to be thinking about, am I sick? Am I not sick? I just, I don't have time for it. I want to be a strong person. I want to be a strong healthy person. And to really have to add in paying closer attention to my body and what may or may not be going on just bothers me. I just don't want it to have to be part of my routine.
A number of people talked about going at a slower pace after cancer than they had gone before, either for physical reasons or in order to more fully appreciate life. Kim, for example, said, “I did not come out of this experience with the same brain I went into it with...But I have come to the point of accepting it and realizing I can still function this way.” Linda noted that for her, “Stuff's not important anymore. I want to enjoy the people around me more.”
Janet S. no longer sweats the small stuff.
Janet S. no longer sweats the small stuff.
This has definitely made me not sweat the small stuff. And I have also gone on to discover that most of it is small stuff. And if you're always focused on seeing the bad, or the negative, or the worrisome parts, yes, those parts are there. They're always going to be there. But worrying and stressing about them aren't going to change them. I don't take myself as seriously as what I used to. I can laugh at things easier than what I think I used to. Things just don't bother me. There are so many more important things in life to focus on than the petty things. It's about serving yourself. It's about being fair to yourself. It's about loving the people around you, and accepting their love back, and accepting the people who are in your life for who they are, and what they are, and not wanting them to be more or less than what they are. Appreciating just everything.
Changing as a Person
For many of the people we interviewed, having breast cancer was a profound, sometimes life-altering experience. This led them to reflect on how cancer changed them, and how they would approach life going forward. Many described these questions as important, but also difficult to answer. Kawanna struggled with what it was like “to go from being...a very active participant in your life to being a spectator, and suddenly having everyone have to or want to do things for you.” Sharon said “I need to find out now who I am, and what do I want to do? And, how do I do that? That’s the hardest part.” Merle noted they “can’t go back to the body that I had before…on a biochemical level, I feel different.”
Kawanna is still trying to figure out how she is changing as a person.
Kawanna is still trying to figure out how she is changing as a person.
Even when I think of my own growth and think that, all right, perhaps I'm changing as a person because of what I've gone through with this diagnosis. Or, you know, maybe it's just I'm scared, and I'm just like, all right, maybe I need to do something that I was always meant to do. So, that's hard for me to think that, in order for me to do that, I have to but I know that they would support me no matter where and what I did.
What do you think you might have always been meant to do?
Oh! I'm still trying to figure it out. I really am. I'm still trying to figure it out.
Casey says he has to reinvent himself now.
Casey says he has to reinvent himself now.
But you have to move on. I mean, you can't just, “Oh, I had cancer.” “Oh, what are you doing? What did you do the last couple of years?” “Oh, I had cancer.” You know, you can't just keep using that as a, how it defines you because it didn't define me. I mean, it did at the time. But it didn't really. I don't know. Now it's something that I had. And now I just have to figure out, because I became recluse, like I said. I needed to. I didn't want other people's crap or pity. I didn't want to, I did my own thing. I had fires every night. I went up to the woods. I did my own thing that I needed to do for me. And now that I don't have that anymore, you kind of have to now reinvent yourself because that define, that took so much control. I think when people are going through it, it takes so much control, and it takes so much energy, that you do have to put things on the back burner because you have a choice. And you can't, and then, like I said, when it's done, and you're just kind of, “All right. Now what do I do?”
Several of the people we spoke with told us that dealing with hardship, both throughout their lives and during their cancer experience, had strengthened their sense of themselves as someone who can handle anything. As Sarah put it, “[Cancer] woke me up to the fact that I’ve got [agency].” Casey said, “I'm really stronger than I thought I was. When the chips are down, I can handle it...I can do it without somebody holding my hand.”
Amber says hard experiences in her past prepared her for cancer.
Amber says hard experiences in her past prepared her for cancer.
My parents divorced when I was very young. My relationship with my mother, it's pretty much nonexistent. So I didn't have the support system as far as mother, father, unfortunately, going through it all. But all of the struggles that I went through in my younger years has made me who I am today, and strengthened me to go through what I went through. I thought losing my dad was one of the hardest things I had ever gone through in my life, and then I was diagnosed with breast cancer and going through that. That is, that was by far the most difficult thing to go through in life. But everything leading up to that prepped me for that. And so I feel like it, it made it, made me go through it a little bit easier, just going through other struggles in life. I was, I was strong for it. I was made for, you know, I hate to say it, but yeah, made for it.
Taking New Paths
People we interviewed said that transitioning to a new normal wasn’t easy, even when they had a sense of where their new and “different path” might lead. Lisa S. noted she didn’t want her life to change but would learn to “have fun in different ways”–and also get a pink ribbon tattoo “will say survivor” to “remind me every day.” Kim summed up what a number of people reported, saying she “struggled with” finding a way to move forward into this new phase of her life instead of focusing on what she had lost.
Linda found it hard to accept that she would never get her old life back.
Linda found it hard to accept that she would never get her old life back.
I kept saying to my husband, “I just want my life back. I just want my life back.” Because I felt like my life was careening out of control and I had lost some of that control. I felt like I probably had lost all of it, and how was I ever going to get this back. How was I ever going to be able to fight this cancer if I didn't get some manner of control? And what I finally came to realize was that I was never going to get that other life back. I was now on a different path and that it was up to me to walk that new path, and yes, my life would change, but I would stay the same or maybe I'd be even better. I don't know. It took me a long time to say that, so that's why I'm telling other people. So, if you have those feelings, you'll understand that it's okay to say that. But just find your new path.
Lisa S. realized, after some grief, that she will need to find new ways to enjoy her life.
Lisa S. realized, after some grief, that she will need to find new ways to enjoy her life.
I'm single, I'm having so much fun just fooling around and playing. My life's going to change. I don't want my life to change. I want my life to stay the same. I think the thing I got frightened by was, “Will I be able to live the life that I have? So for me, it was getting used to the idea. It was like, you know what? I'm 56. I had a great run. And if I have to figure out something different, fine. And if for some reason that doesn't happen, I will go out to bars, and laugh with people, and not bring them back, or whatever, not have fun in bed. I'll have fun different ways. I will have fun in different ways. And that took a long-- that took a long-- that took a while. You can't mourn the things that you might not get in the future. You have to feel good for the things that you had. If you start mourning the things that you lost, you, it's just a bad place to be. It's really a bad place to be because you'll always think that you should have them all the time. Well, you know what? Things change.
Some people found a new path forward by becoming advocates for others.
Merle wants to share their story to enter a larger public dialogue and hopes to promote more connections among non-binary people with cancer.
Merle wants to share their story to enter a larger public dialogue and hopes to promote more connections among non-binary people with cancer.
But, I guess, I just want to put it out there that this is a part of my creative work. And like, you know, I share openly about this. And so, also, I'm interested in participating in larger dialogues about this. And actually, that's been something that I haven't really figured out how to do that in terms of, I have done forensics or debate or public speaking in the past. And part of sharing my story feels like, I do want to find ways to enter into a larger dialogue. And there's a non-binary, black femme cancer, breast cancer survivor named [NAME], who I've been following on social media. And, you know, so it's like they are out there, putting their story out there about their own breast cancer journey.
---
And I just kind of feel like there just really aren't that many people out there coming from these So this is a very kind of roundabout way of saying, though, that I'm sharing this because I want to be a part of larger dialogues, but also that if there are others out there. Sometimes I think it's about finding each other, you know, and that sometimes when these narratives become more public, it's easier for people to find each other. So, I'm using [NAME] as an example of, their story was one of the few that I could find out there, where I was like, oh, I actually want to see more of this. But there's actually not a ton out there. I am a part of some Facebook groups for like non-binary or trans cancer patients. But it's a relatively small group. But, you know, it's like, I know those people are out there. We are out there. It's just that it's kind of just about how to bring more of these stories forward.
Michelle found passion for a career in advocacy through her breast cancer.
Michelle found passion for a career in advocacy through her breast cancer.
Oh, the one thing that I did not say-- that when I was talking about figuring out that I wanted to become an advocate for breast cancer and for women, is that last year when I when was at the survivor luncheon, I said that my goal, going forward, was in three years to be the speaker, the keynote speaker for the luncheon, and to be promoting a book. Well, I haven't written my book yet, but this year, one year later, I am the keynote speaker for the [event], which is in October.
The theme for the event is Twinkle Twinkle, You're the Star. And they're honoring all the survivors locally. But my speech is how I found my twinkle. And while that might not necessarily be my phrase, it's true. I have found something in my life because of the cancer that I've become very passionate about. And it is going to be my career for the rest of my life. And so I am honored to be talking about that. So I was lucky enough to figure out a new goal and a new hope from the cancer. And if I can share that with other women and to show that, hey, like my story is not so special, but the things that I found inside myself and from the support that I have, you can do amazing things.
Motherhood
Hormone-suppressing medications that many women take after treatment can cause early menopause, and surgery to remove organs such as the uterus and/or ovaries likewise means it may no longer be possible to have a biological child. Losing this ability felt, for some, like a profound loss. Amy said she feels she is “not really a woman anymore”. Peggy noted that even though she “knew that I wasn't going to have any kids in life, but I still had a moment where now I've lost my chance… So that was hard.”
Lisa J. was comforted by exploring adoption as an option.
Lisa J. was comforted by exploring adoption as an option.
But I always love kids. I always thought, well, you know, I think one day I'd like to have kids. You know, marriage, not marriage, as long as I afford them, I'm going to have kids. So, then I'm getting—then that's when the BRCA test came back, and it's like “Oh ovarian cancer. Oh, you have a higher rate for ovarian cancer.” You know, and so it flashed back to my oncology doctor saying this radical removal of your ovarian system and your breasts. And I'm like, “Yeah, but if I do want to have kids, 36 is not the cutoff date,” you know? So then I did some research into adoption, and they're like, “You can adopt at any age.” So, all of a sudden, my pretty quiet biological clock just shut down. I said, “Oh, any adoption, any age, as long as you're healthy or as long as”—you know, whatever the criteria was, I met it. So, I'm like, “Okay. So, if something happens,” because that was also very big for me, too. I'm thinking if this does happen to me, that's when I flashback to my mom, you know, and how I was left young. So, I'm like alright, let me take that off the table. I can adopt. And as long as I could provide or make sure they're okay, then I can have kids. So-, but as far as having children biologically it took the angst off the table because I realized I had this BRCA gene. So then it became like a louder message in my head. I said, okay, so I've got the adoption handled, you know. If I want to, that's an option. Foster, adoption, like, I found out all these different options. It's like phew.
Asante wanted another child but breast cancer changed her perspective.
Asante wanted another child but breast cancer changed her perspective.
I wanted to have another baby so badly right after I had my son, and then breast cancer saved my life. And I say that breast cancer saved my life because when you are so focused on one thing, sometimes you need to take a step back, and realize that there is more life to live. And if God is giving you this one child, you should be happy with the one child that you have.