Carrie
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Ten years ago, at the age off 44 with children ages nine and five, Carrie was diagnosed with cancer in her left breast. She had a single mastectomy with no reconstruction, chemotherapy, radiation, and tamoxifen, which she still takes. The treatment year was “grueling.” Her employer-based insurance covered only 80% of her treatment costs. The co-pays for the remaining 20% forced her family into medical bankruptcy to avoid losing their house. Carrie describes how, “we had to coach our kids not to pick up the phone when the debt collectors were calling.” She says, “it was an eye-opening and humbling experience to go from a solidly middle-class family… when you've been brought up [to] take care of yourself and pay your bills.” She has since gotten a new job with full healthcare benefits.
Over the next years Carrie was diagnosed with colon cancer, Lynch syndrome and pancreatic cancer. Learn more about Carrie's experiences with inherited cancer risk here. Just recently, two different cancers were found in her right breast. Fortunately, it hadn’t spread, and she had another single mastectomy, again with no reconstruction and she is grateful that treatment for these cancers was covered by her employer-based insurance. But with her need for so many cancer screenings, Carrie does not have enough leave time to attend a support group, see a mental health provider, to consider breast reconstruction surgery, or to address tamoxifen’s hit to her sexuality. After dealing with two breast cancers and two other cancers, Carrie says losing her hair during her first breast cancer episode remains was one of the hardest parts her long cancer journey. Hair loss, Carrie explains, signaled to the world that she has cancer and apparently gave all sorts of people permission to tell her about someone they “know who has cancer.” Carrie feels pretty good now, but acknowledges —with her history of multiple cancers—at some point she will not.
Given the shorter and shorter time between each new cancer episode, Carrie is planning five versus ten years out. Having a good quality of life is more important than a longer life with toxic treatments. Having exceeded her grim prognosis by a long shot, Carrie is trying to not “beat” her mortality “to death.” She is, in fact “living with cancer,” not “dying of cancer.” She aims to set an example for her children on how to live well, and eventually, on how to die well. The first conversation about her limited lifespan with her young-adult daughter was brief, matter of fact, and really painful. Carrie knows such conversations will become more personal and involved as her disease progresses.
Carrie occasionally takes a timeout from her busy life to cry and rail at the unfairness of it all and has little patience for people who whine about “inconsequential things.” Close family, good friends, and neighbors, and continuing to work all help a lot. But writing and her ability to laugh at breast cancer and the sentiments that surround it rise to the top. Carrie credits pink-focused advocacy groups for getting certificates for acupuncture and coverage for her wig. But as a survivor of multiple cancers, she notes breast cancer is the “sexy little darling of all the cancers,” and a ”sign of massive sexism” that “losing a breast is more traumatic than losing a third of your colon.” In referring to the pink ribbon, she says, “poor colon cancer… what's its color? Brown?”
For Carrie, radiation was the final step in a year devoted to treating her cancer.
For Carrie, radiation was the final step in a year devoted to treating her cancer.
By the time you do the biopsies and get your surgery and then heal from that, and then you start chemo and then you heal a little bit from that, and then you start radiation, and then you heal from that, and then you start the tamoxifen, it's pretty much a year.
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That treatment was really grueling. Surgery, chemo, and radiation, that was a lot. That was a year of treatment.
Carrie struggles to deal with the impact of hormone therapy on her marriage.
Carrie struggles to deal with the impact of hormone therapy on her marriage.
I think it definitely affects your libido, and that's problematic for your relationships, and for your--you know, I'm married. So that's definitely an issue.
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I went to a workshop that talked about sexuality and cancer and that, and there was some good information. Honestly, I found some of that just some of the things that you needed to do just didn't really work into a busy lifestyle. It just is like when you have work and kids and financial concerns, and it's hard to carve out that time for that. And that's unfortunate, and that's really hard, and it's hard on a relationship, for sure.
Even though Carrie had insurance, undergoing treatment led to bankruptcy.
Even though Carrie had insurance, undergoing treatment led to bankruptcy.
What was your insurance like and how has it been over the course of all these episodes?
Well, when I worked retail, it was a little less comprehensive. So, we basically were responsible for 20% because we were considered out-of-network, that was a lot. And also, it was, there was a recession, and there was, there was just a lot going on. And, you know, I was hourly, so then when I did take off for FMLA, my job was safe, but I had no income. And my husband's a private contractor, and again, it was a recession. And so, he was working in manufacturing and, and that wasn't going great. And, like I said, 20%, we were responsible for 20%. We did work with the hospital on their community care program and got some grants and some of those things were given. But in the end, we had to file bankruptcy, or we were going to lose our house. We had to coach our kids not to pick up the phone when the debt collectors were calling. It was, it was an eye-opening and humbling experience to go from a solidly middle-class family, and then just through the illness and the recession. And, it was kind of a perfect storm of things to go to where you're saying, “Don't pick up the phone, kids.” And, and looking at, at your balance sheet and going “The only way we can save our house is to file for bankruptcy.” And that's really hard. That's really hard to do when you've been brought up, you know, that you take care of yourself and you pay your bills and that's the right thing to do, so, it’s been, that was a really difficult part of the ride.
Working is one way Carrie made sure cancer didn’t cause her to “drop out of the world.”.mp4
Working is one way Carrie made sure cancer didn’t cause her to “drop out of the world.”.mp4
I am a firm believer in, “I'm a person who's living with cancer.” I don't feel and have never felt like I'm a person dying of cancer. I still feel good, and I know one of these days I'm going to wake up and I'm not. But, you know, people are like, "You're still working?" And I just feel like, what else would I do? What else would I do? Sit home? First of all, it's not economically feasible because I can still work so I can't just tell the government, well, I think you should just—I’ve got a really bad diagnosis or prognosis, so you should just pay me to sit home, even though I can work. So, you know, I'm not going to do that. And also, I don't want to drop out of the world. I want to be, I mean, that's the worst part of being a patient is that you are sucked out of your world, and it all just keeps happening around you, and you are suddenly a patient. And it is dehumanizing.
Carrie says it’s nice to be needed by her dog.
Carrie says it’s nice to be needed by her dog.
Fluffy’s been just the ticket. He's affectionate, and, but he loves to play. And you can take him for walks. And it's just really nice. And it's nice to have a little thing that needs you, especially when you're on usually the receiving end of the caretaking, to have something that you take care of feels really nice. And they just, you know, they just love you for where you're at. They're not looking at you going, really? Because you look all pasty. Or, you know, or what, what's with the hair? Where'd the hair go? Or what's that thing, what’s that drain hanging from you? What is that? They just, it's just like, “You're my world. You're my world from start to finish.” So, I think pets are great. Great therapy.
Carrie doesn’t want to drop out of the world.
Carrie doesn’t want to drop out of the world.
I am a firm believer in I'm a person who's living with cancer. I don't feel and have never felt like I'm a person dying of cancer. I still feel good. And I know one of these days I'm going to wake up and I'm not. But, you know, people are like, “You're still working?” And I just feel like, what else would I do? What else would I do? Sit home? First of all, it's not economically feasible, because I can still work so I can't just tell the government, well, I think you should just, I’ve got a really bad diagnosis or prognosis, so you should just pay me to sit home, even though I can work. So, you know, I'm not going to do that. And also, I don't want to drop out of the world.
Carrie believes in the power of people’s souls.
Carrie believes in the power of people’s souls.
I don’t subscribe to any religion, but I do believe in the power of people's souls and then energy. When somebody dies, I think that that energy escapes into the universe. I'd like to think that somehow it can still touch the people that it loves.
Carrie objects to the pink ribbon for a few reasons.
Carrie objects to the pink ribbon for a few reasons.
It just makes me want to puke. I did the Komen and honestly, Komen, I got certificates so I could get some acupuncture to help me with my nausea. I got, it paid for my wig. So, they did—I mean, on a very personal level, I saw benefits of Komen fundraising. And then there was all that political fallout, and that was really hard, and, and that's when I kind of had to walk away from that. But I did do the walk one year. But it's, yeah it is definitely, you know, the sexy cancer in a weird. And I think it’s just shows you what society values. Yep. And it’s because, “Oh, my god. A woman's breast. She's losing her breast.” As if, as if that loss is just so much more traumatic than losing your ovaries, or a third of your colon, you know, or a kidney. Part of that, I think, is what I find also kind of distasteful is I just think it's massive sexism. Because that seems to be the most important thing. And actually, when I had my first breast cancer, I sent out as a joke - but it was really fun - to my, a challenge to my friends. And that was come up with the most absurd breast cancer product crossover. So, I got, yeah, I still have my breast cancer dog toy. But somebody was like, there were breast cancer mud flaps, breast cancer rugs, breast cancer bottle openers. And it's just, it is just endless. You know, and then you think of poor colon cancer, and you're like what's its color? Brown? I mean, nobody's like, does it have a color? It has a month? What? Do, you know, nobody wants to sit around and talk about it. Nobody wants to put it up on their billboard. So, yeah. It’s really interesting how breast cancer is like the little darling of all the cancers.
Carrie says it’s important for providers to know patients as people.
Carrie says it’s important for providers to know patients as people.
I can appreciate that they probably don't have a whole lot of time to get to know people. But if there is any opportunity to get to know somebody as a person, as an individual. I think, that's helpful. Or even, you know, just even if they mention that they love dogs. You know, I don’t know, write down a note, and the next time they come in, say, ‘How's your dog?’ Or ‘Did you see that kennel club show.’ Or I don't know. It's just something. It means a lot to people to not feel like they're a slab of meat, or they're on an assembly line, because yeah. I mean they're saying, ‘I'm coming to you to save my life, and so I want you to be smart, and I don't need you to be my best friend. But it would be nice if I felt like you really actually cared and have some interest in me as a human being.”