Allie Vreeland doesn’t have a typical day. Sometimes she goes to work. Sometimes she stays home and watches TV all day. She decides when she wakes up, and she answers to no one but herself — and her treatment plan.
“Every day is a new adventure, basically,” Vreeland says with a laugh. If not for that ever-changing, unpredictable treatment plan, you might think Vreeland has a dream life for a 29-year-old woman living in New York City. (Who doesn’t wake up for work sometimes and yearn to stay in bed a little longer?)
But two years ago, Vreeland got the kind of news no one wants to hear: She was diagnosed with breast cancer. Then, following a mastectomy and a year of chemotherapy, radiation, and reconstruction, she found out the cancer had spread to her liver, making her one of the roughly 30% of women diagnosed with early-stage breast cancer to go on to develop metastatic, or stage IV, breast cancer.
Now, like an estimated 150,000 other women living with stage IV in the U.S., Vreeland lives at the mercy of her unpredictable disease. The median survival for metastatic breast cancer is just 3 years, which means that half of the people diagnosed will be gone within this short period of time. While others, depending on various factors — genetic markers, the ability to withstand treatments, and, frankly, luck — may live with the disease for much longer than that, there is no cure, no end to treatment, and no sure way of knowing which side of that statistic you'll land on.
Stage IV breast cancer is responsible for virtually all breast-cancer deaths, and yet, while we practically drown in pink ribbons and breast-cancer awareness year after year, 61% of Americans say they know little to nothing about metastatic breast cancer, according to a recent survey.
All month long this October, Refinery29, in partnership with #Cancerland, has been bringing you these women's stories, in an effort to change the conversation about breast cancer. We've talked about how only about 2% of the money raised for breast cancer research goes toward metastatic disease, and we followed stage-IV activists to D.C. as they lobbied congress to change that. But as October comes to an end, we want to turn to the daily, lived experiences of these women: What is it really like to live with a disease that everyone seems to have heard of, but no one really understands?
Ahead, in a series of vulnerable photos and interviews about their symptoms and side effects — but also about their hopes for the future and how they take care of themselves — three young women living with metastatic breast cancer explain it in their own words.
Allie Vreeland: "It's definitely true that the awareness is not there. What is important now is doing the research for stage IV. But also: I want it to be known that breast cancer and having a mastectomy and reconstruction doesn’t mean that you’ve got a nice, new pair of tits, and everything's good now. It means that you have these scars that are never gonna go away, and that you have been emotionally and physically stripped to a point where you just don’t — you may not even know who you are anymore, and it takes a lot to come back from that.
"Breast cancer has a huge emotional impact on your life — whether it be your self-image or your relationships to other people. And as a young person, especially, just moving forward with your life and having cancer, that’s [a lot of] baggage to bring along with you."
Photographed by Melody Melamed.
"Pictures of mastectomy scars might be shocking to people, but it's a reality. I think it's important that it's seen and that people's voices are heard, especially for women who are stage IV, because people are dying. So many women, especially, are dying every day. Ultimately my hope is a cure, of course. But it's not just about finding a cure, but also finding ways of managing the disease and making quality of life more of a focus, because right now that’s really all that we have: managing a chronic disease for the rest of our lives. And if you're sick all the time from these toxic treatments, what kind of a life is that?"
Photographed by Melody Melamed.
"[For these photos,] I was more self-conscious about my stomach than my chest because it just feels like... 'here is F igure A,' or like my breasts are now something from a textbook, you know what I mean? It sounds really horrible and cold. It's not that I feel like they're not part of my body or anything, but they are foreign. It doesn’t feel the same to take my shirt off in front of someone as it would have before, if that makes sense.
"I guess at a certain point, after being poked and prodded and probed in surgeries and biopsies and so many procedures, you become desensitized. They don’t really feel like breasts to me anymore. It doesn’t really feel like nudity."
Photographed by Melody Melamed.
"It's taken me a lot of time to sort of grieve the person that I was before and accept the person that I am now. [After being diagnosed,] I had to find my way back to what I liked about myself and find my way back to my style...to the things that helped me express who I am and helped me feel good about how I look.
Having hair definitely helps, but it just — it takes time. It's not that I've totally accepted it yet, but I definitely feel like I can look back and say, yeah, I looked really great then, but I can feel really great today, or I really like this dress, or whatever the case may be. It might be different, but it's not necessarily better or worse. It's just a different version of me now. It's a new normal."
Photographed by Melody Melamed.
Ayanna Kalasunas, 37, feels older than her age. And not older in the sense that she's an "old soul" or she's "wise beyond her years" — she feels physically aged by her experience with breast cancer.
"I don’t know what it feels like to be 37, but I don’t think you feel like you're 53 on the inside," she says. "That’s probably the best way I could describe it."
It's an understatement to say that Kalasunas has been through a lot in the past few years: When Kalasunas was 31, her mom was diagnosed with metastatic breast cancer (she died last year). So when, two years later, she found a lump in her own breast — just a few months after getting engaged — she knew what it could mean. Still, she thought for sure that she'd at least caught her breast cancer early.
"Then, on the first day of what I thought was going to be my treatment, I found out it had spread to my liver," she says. She would later learn that the cancer had also spread to her bones.
She went on to have surgery to remove the original tumor from her breast, followed by radiation. She kept her breasts (mastectomy isn't recommended in cases when the cancer has already spread) but lost her fertility when she began the hormonal suppression drugs that help keep her estrogen-fed cancer at bay.
The fact that breast cancer has destroyed her dreams to be a mom is one of the hardest parts, and something too many people don't understand, she says. "Baby showers are awful. They depress me more than anything because I always wanted to have a baby. It's so insignificant in a way to the whole parenting process. No one says 'you know, part of being a great parent is starting with a baby shower,' but those are the moments that are really sad for me. The ones where you're taken out of your peer group."
Photographed by Melody Melamed.
"From the moment when I found out I was metastatic, I was very matter of fact: This is not going to kill me. I'm not doing that. Not me, not today, not in five years. No."
So I have to say that I don’t have a lot of moments of being like, 'I'm
gonna die.' But it’s still a really hard place to be in because as much as I am hopeful, and as much as I am living my life, there is still this balance between feeling like I'm going to live like I have forever, versus feeling tomorrow is the last day.
"Nobody really wants to live every moment like it's their last. 'Living every day like it's your last' is a really fun and convenient life motto until somebody tries to tell you when your last day might be. A lot of people who say that don’t really have a diagnosis that is sort of like the train number and people are trying to tell you when it's going to come, you know? Once you hear that, all you want to do is live like no one had ever told you that."
Photographed by Melody Melamed.
"Right now I feel really grateful that my symptoms and my side effects are few and far between. Day to day I feel so much better now than I've felt over the past two years. I'm on a drug with with very few side effects, which is nice because that’s not always the case. I am feeling a lot better than I used to. Like, in the past I've had bone pain to the point where I was never comfortable because it was terrible to sit, I don’t want to stand on it, and walking was out of the question. [The bone pain] was the closest I became to being afraid that this was really going to get me, like I was not going to make it.
"So one thing that has always been important to me is for people who are going through this to know that it's worth having hope. And for people who aren't going through this, happiness and positivity and just living life is too beautiful to be taken for granted.
"If it takes somebody reading my words and hearing what me and my husband have to go through to realize it... then, okay. Sometimes it's really scary to wake up in the morning. I don’t want to continue to feel this way. I don’t want to keep fighting with the insurance company like I was this morning, because they don’t want to pay for medication that I need. I literally am supposed to start medication this week and I don’t know where it's going to come from or how I'm going to pay for it, because me and my husband certainly don’t have $4,000 laying around. But I'm just going to have faith that it's going to be okay. Life has taken care of me so far. Somehow in the midst of all this mess, and all this shit, my life has still remained beautiful."
Photographed by Melody Melamed.
"We talked about how not having children is one of the toughest repercussions of this whole diagnosis because I always saw myself eventually being a parent. But a year ago my mom was in hospice, and this dog [who was up for adoption] shows up on my Facebook page. I wasn't trying to get a dog when I was spending hours and hours at hospice with my mom. But my neighbors were like, 'We'll foster her until your mom passes and then you can take it from there.'
"And her name was Bailey, which is important because I used to have this cat named Bailey. This pet was extremely important to me, so much so when that cat died I got a B tattooed on my wrist. So when Bailey the dog came to me at this specific moment in time when I had to deal with losing my mom, it was just one of those spiritual reminders that everything is going to be all right."
Photographed by Melody Melamed.
Caitlin Kennedy, 32, has trouble remembering what life was like before breast cancer. "Most of my adult life I’ve had [breast cancer], and there’s no way to know if things would’ve been good or bad without it," she says. "I was diagnosed a month after I turned 26, and I was stage 2 in the beginning. It came back when I was 29."
When most people think of a cancer's "recurrence," they imagine it's returned to the same spot. But in Kennedy's case (and as in many stage IV patients' cases), it returned in a way that seems unthinkable. "It's hard to explain, but there’s a lining around your lung, and [the cancer] was there in the fluid," she says. From there, it's been nothing short of a rollercoaster — the out-of-control kind that appear in bad dreams.
Kennedy had a good run with a drug that kept her blissfully stable for more than a year before she developed back pain thanks to a large tumor that formed on her upper spine. She switched drugs again, and "after the three months it started to go quickly go downhill."
She had her ovaries removed — they were riddled with cancer — and her back pain continued. Another scan found that the cancer had eaten through the vertebrae. "I had a hole in my back and I had no idea," she says. She saw 5 different doctors, all of whom had slightly different ideas about what she should do next. She then decided on a clinical trial that seemed to keep the cancer at bay, but caused complications in her lungs.
Then, finally, she caught a break when she switched drugs again, this time to a drug called Xeloda. "Xeloda cleared up pretty much everything," she says. "I was doing pretty well up until this past July when they sent me for scans, which revealed some possible new spots on my liver."
Now, she's on yet another new combination of drugs, and hanging in there. "Just last week I took medical leave at work," she says. "I couldn't handle the stress of work and the stress of myself at the same time. It could get crazy again."
Photographed by Melody Melamed.
"My family, even people I know, don’t get the idea that I will be in treatment forever. Even people who have had breast cancer don’t get it. The question is always 'How many rounds of chemo do you have have until you’re finished?' No one gets it that I'm never finished. And you know what? I didn’t get it until I had it myself."
"I feel that if it takes sharing my story for someone to learn that just because you got it early doesn't mean it can't come back, then I will participate. Watching other people give more and more money to awareness and prevention makes me sick to my stomach. I knew about breast cancer when I was like 13. If you don’t know about it and you’re in your 20s then you haven't been watching TV or listening to anyone. We don't need more awareness. We need research to help people who are stage IV. It’s kind of amazing that up until recently there was nothing."
Photographed by Melody Melamed.
"I ask Why me? all the time. There was a point in time where I was thinking and debating, d id this happen to me because my higher power believes I can handle it? But I don't think anybody should have this happen to them.
"Still, there are times when I forget that I have it. I’m really blessed to be able to do things that even some healthy people don't even think to do. Staying active helps keep my head straight. Yesterday I went to my therapist and then I went rock climbing, and today I went to the gym. I’m going to go hiking tomorrow. I try to make sure I do one thing a day that's something for me. Even if its just small, like I just went to the gym, still I did something for me."
Photographed by Melody Melamed.
"I think about the future a lot. It’s scary. I’m not going to see people grow old unless some miracle happens or I get on a treatment that keeps me alive that long. But the way I’m running through treatments it makes it pretty frustrating.
"As of right now I have two clinical trials and I still have all the intravenous chemos. No one’s told me my time is up yet at all. So I focus on taking things day by day."
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