Amy
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Amy felt a lump while breastfeeding. Everybody, including her doctor’s receptionist, said, “it's nothing to worry about. It will go away.” But it didn’t go away. Amy finally saw her doctor, who not only took her seriously, but as Amy says, “fired the receptionist for putting me off.” She recalls the whirlwind of getting the mammogram and ultrasounds, the referral to, and sitting with the oncologist looking at a “big, spidery-looking spiculated tumor” on the image. A biopsy and axillary node dissection were scheduled; ten of the twenty lymph nodes taken came back positive for cancer. Elevated liver enzymes led to an MRI and PET scan, which revealed that the cancer had spread to her liver and bones. With two daughters, an 18-month-old and an adolescent, Amy at the age of 33 was diagnosed with “de novo” (diagnosed with rather than progressing to) metastatic breast cancer. Through Google searches, Amy found that de novo Stage 4 patients with liver mets live on average six months. With a drain in her swollen arm from the axillary node dissection, Amy thought, “oh, my gosh, I have six months to go, and I literally can't hold my child.” It remains the most painful part of her journey.
Amy has made it four years thus far since her diagnosis. After six months of Taxotere, with some tolerable side effects, she’s been stable on her first line treatment. Recently, a tiny lesion in her brain was found. Hopefully, stereotactic radiation will get it and she will stay on her first line treatment. Metastatic cancer stories, Amy notes, are often untold, especially those of the “de novos,” who still have their breasts, as there is no benefit to removing them once the cancer has spread. People often look surprisingly healthy, making metastatic disease a hidden condition that often kills quickly—many are surprisingly young. Amy wishes that doctors would routinely scan for spread to other organs before surgical axillary node dissection, which in her case, has caused unnecessary pain and limited range of motion, reducing unnecessarily the quality of her already shortened lifespan.
Living in her compressed timeline, Amy and her husband have been a little freer with their finances, hastening the completion of their house and the barn for the horses she loves to ride. She has committed herself to being a super mom, home schooling her five-year-old daughter, coaching her older daughter’s soccer team, and generally modeling strength and purpose. She has created an “infrastructure” of kid-enrichment programs in her rural community, rather than complain about their absence. She started a Girl Scout troop and joined a faith community that aligns with her family’s values. This infrastructure, she hopes, will be there for her family after she is gone. For her fellow patients with metastatic breast cancer, Amy has created a local chapter of Metavivors, and support and advocacy group.
Amy recalls that when her baby daughter “cried out for momma,” she worried, “there’s going to come a time where she's going to call out and I won't be there. And there could come a time when she won't even remember me.” Amy is so grateful that she has lived long enough that she will be remembered. As she consciously makes memories, she wants to be remembered for being loving and strong, not for yelling about unimportant things. Amy would ask friends and family to not just drop off the food and run away. Rather, spend time to share a cup of coffee or offer to help with household chores. Acknowledging that “cancer has all the advantages, and it's ahead of our medicine. It's ahead of our doctors. It's always a step, several steps ahead,” Amy would hope that her oncologist would come to her funeral and not think her death is a failure.
Amy had a new baby and was in her 30s when she discovered she had breast cancer.
Amy had a new baby and was in her 30s when she discovered she had breast cancer.
You become a little scientist when you're dealing with lactation. And I had an indented nipple, but I've always had sort of an indented nipple, so I never really thought much of it. But, when I quit pumping, this breast continued to have a lump and be painful. And I had sort of an ache. And everybody put it off and said, “Oh, this is a galactocele. This is a duct. It's nothing to worry about. It will go away.” Well, it didn't go away. It started to look like a bruise and became a very palpable lump. So, I got it looked at. I think my doctor actually fired the receptionist for putting me off. And came back in and then said, “You need an appointment with an oncologist. Schedule, cancel the rest of your plans. You’re staying with us, and we're going to keep an eye on you, and figure out what's going on.” So, I basically walked from there to get a mammogram, ultrasounds, met with the oncologist, and could see that it was this big, spidery-looking spiculated tumor. The doctor couldn't definitively say, “Oh, we know that it's this,” but you could see on the ultrasound what it was. And so they scheduled me for a surgery that Monday to do a biopsy, a port implant, and do an axillary node dissection. They took 20 lymph nodes. 10 of them came back positive.
Amy’s main doctor “put everything” in her hands.
Amy’s main doctor “put everything” in her hands.
I have a wonderful physician, who really has put everything in my hands. But I mean, I agreed with her, with her vision of care. So, you know, pretty much, she'll lay it out and say, here's, here’s what you have on the table. This is, this is kind of the standard. There are these other options. And I'll ask questions. I'll ask about clinical trials. And she's pretty frank with me about, you're not really at this point for this trial, but if you want to go do this, I'll sign whatever authorization. If, you know, if I want to get second, or third, or 10th opinions, I think, she would sign all the paperwork.
Amy describes the complex dynamics of support for people with Stage 4 breast cancer.
Amy describes the complex dynamics of support for people with Stage 4 breast cancer.
I want people to be present. Just be present. Don't, don’t give me a gift basket, throw it at my house and run away. Don't send me a card. Show up. Come here and help me do laundry. You know, everyone's got laundry. We all need help folding laundry. Come here and do laundry with me. Have a cup of coffee with me. Let's go ride horses. Let’s go do, just be here with me. And that's the most important thing. But then with my metastatic friends, I feel like I keep them at arm's length ... Like there's so many unspoken things that we already understand.
Amy had a new baby and a teenage daughter when she received her diagnosis of metastatic breast cancer.
Amy had a new baby and a teenage daughter when she received her diagnosis of metastatic breast cancer.
It never dawned on me that it could really be something serious. I thought, you know, best case scenario, when I first met the physician, and they said there was a lump and it was cancer. I thought, “OK, well, I'm going to get a double mastectomy. And they're going to give me matching B cups, and I'm going to maybe get a tummy tuck. And I'm going to look fabulous by the summer, and this is a non-issue. And I'll move on with my life and never worry about it again.”
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And when I did the MRI and PET scan, it came back that I had cancer in my liver and my bones. At that point, that was [DATE] of 2014, and my daughter at that point was about 18 months old. So, I immediately started googling statistics. At the time, I was 33 and didn't kind, didn’t really know what to expect. I found one statistic that said that de novo stage 4IV patients with liver mets had an average of six months. And so here I was with this arm that was now swollen with a drain in it and an 18-month-old that I couldn't hold. And that was probably harder for me than any other aspect of it was, “Oh, my gosh, I have six months to go, and I literally can't hold my child now.”
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We did talk with my older daughter about those things. And of course, she was 15 when I was diagnosed, which is an emotionally chaotic time already. And so at the time, we had, we had a very tumultuous six months. Because we had already moved. We bought this farm. I changed jobs, careers. And so, I was traveling a lot more for work. We got full custody of her and I got cancer. And all that happened within about four months. So, no pressure. So, she was looking at this like we just got everything settled. And she was here full-time, and now, I'm going to die. And think that was a very black-or-white thing for her. And so having to kind of swallow what I was terrified of with my diagnosis and say, “You know, I'm in good hands. There are treatment options. I have a lot of options ahead of me. It is a scary-sounding diagnosis, but, you know, there are people that are doing really well,” and kind of presenting it that way. In that, yeah, we need to be prepared, but we're going to keep living life. And we're going to try to take it one step at a time, one day at a time.
Amy explains how treatment never ends for people with Stage 4 breast cancer.
Amy explains how treatment never ends for people with Stage 4 breast cancer.
I think the average person doesn't realize that cancer treatment doesn't stop for a metastatic patient. Because people all ask, “Oh, you're still doing treatment? I thought you quit that. I thought you stopped.” No. We just do this forever until we don't. Then we do another treatment or we don't. And when that bell rings, it's a heartbreaker. Because when I ring that bell, that means I've finished a treatment. I can't do again.
Amy talks about having an illness that’s hard to see.
Amy talks about having an illness that’s hard to see.
In a lot of ways, metastatic breast cancer in a young person especially feels like an invisible illness. Because, you know, I could have a handicapped placard on my car. But if people saw me walking from my car to Walmart, they would be, “You're not handicapped. You can walk. There's nothing wrong with you.” Never mind that “Well, I got mets in my sacrum, and my back hurts, and my arms hurt from metastatic disease.” And, you know, but nobody’s going to, you don't wear a NASCAR t-shirt that says, “here's all the diseases I have in my body that you can't see on the outside because I'm not limping or in a wheelchair.”
For Amy, the possibility of death is like having a third person in her marriage.
For Amy, the possibility of death is like having a third person in her marriage.
It's kind of like having a third person in the marriage really. Because there's times that I'm frustrated if he doesn't understand something, and it's something that means a lot to me. It’s like, “why don’t you get this? When I'm dead, you're going to understand why this made sense.” I feel like I always have that sort of in the back of my mind, the timeline. And I don’t always know, I feel like he thinks I'm going to live forever, and everything's going to be fine. And I worry sometimes that I don't know if he understands. And I want to have a long timeline. I don't want my family to walk around like planning for a funeral. But then at the same time, we should probably have those plans made. And I can't have those conversations with him at all. I think it’s that he's in denial that those are things that we have to discuss.
For Amy, the possibility of death is like having a third person in her marriage.
For Amy, the possibility of death is like having a third person in her marriage.
It's kind of like having a third person in the marriage really. Because there's times that I'm frustrated if he doesn't understand something, and it's something that means a lot to me. It’s like, “why don’t you get this? When I'm dead, you're going to understand why this made sense.” I feel like I always have that sort of in the back of my mind, the timeline. And I don’t always know, I feel like he thinks I'm going to live forever, and everything's going to be fine. And I worry sometimes that I don't know if he understands. And I want to have a long timeline. I don't want my family to walk around like planning for a funeral. But then at the same time, we should probably have those plans made. And I can't have those conversations with him at all. I think it’s that he's in denial that those are things that we have to discuss.
Amy understands that people want to help.
Amy understands that people want to help.
I have never been the type of person to go up in front of a church for anything. And I didn't know that I was going to be going up in front of a church last Sunday. The priest asked if I minded if they prayed for me, and I said, “yeah, it's fine. You know, cool.”
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I just thought it would be, we're going to put your name in the prayer list. Or he did a little special prayer when we did communion. One of the last times I was there, he you know, put his hands on my head and just said a prayer really quick while we did communion. So, I thought he was just kind of asking for permission about that. No, I got up there, and he called everybody that worked in the medical field--that was a doctor or a nurse to come put their hand on me. And then he called for, you know, people that believe in God as a healer, and at the end he said, “anybody who loves Amy, come up here. And if you can't touch Amy, touch somebody who is a part of this entity.” And he said a prayer, and it was all a blur because I was acutely aware of just, I'm in this huddle of people that are putting their hands on me. It was incredible. It was not something that I knew was going to happen. And I feel like things like that are, I don't know if they're as much for me as they are for everybody else. And so, I'm fine with things like that, but not because I necessarily feel something flowing through me, as much as I'm aware that it's helpful for other people to feel like they're part of this thing together.
Amy raises awareness about having an illness that’s hard to see.
Amy raises awareness about having an illness that’s hard to see.
I mean, I live, I live in the South. I live in a rural area. And I still, I met with people, when I'm very open about my disease and not in a way that is designed to garner sympathy, but just to raise awareness. Like, there's a lot of people with seemingly invisible illnesses. We should talk about that. We should acknowledge that. And some, in a lot of ways, metastatic breast cancer in a young person especially feels like an invisible illness. Because, you know, I could have a handicapped placard on my car. But if people saw me walking from my car to Walmart, they would be, “you're not handicapped. You can walk. There's nothing wrong with you.” Never mind that “well, I got mets in my sacrum, and my back hurts, and my arms hurt from metastatic disease.” And, you know, but nobody’s going to, you don't wear a NASCAR t-shirt that says, “here's all the diseases I have in my body that you can't see on the outside” because I'm not limping or in a wheelchair.
Amy says the pink movement has helped breast cancer but leaves out those with metastatic disease.
Amy says the pink movement has helped breast cancer but leaves out those with metastatic disease.
But so, I think that the pink movement helped with that, and it helped to normalize it a little bit and give a little bit of sisterhood to that. But now, it's sort of come to bite us. Because now, there seems to be a sisterhood in the early-stage world, where you're in it, and you fought it, and you’ve beat it, and yay. But the metastatic people aren't part of that conversation, because we're still in it, and we're always in it. We're in it until our treatments stop working. And when that bell rings, it's a heartbreaker. Because when that bell rings for me, when I ring that bell, that means I've finished a treatment I can't do again. That doesn't mean I'm done. So, so, that's, that’s kind of a microcosm of, of where the pink movement is juxtaposed with the metastatic patient.
Is there a movement for women with metastatic disease?
There is. And if we could quit dying, we could get a lot more done. We have lost such powerful advocates in the past year or so. Pretty much all of the founders of an organization called metup.org are dead. One of them just passed away within the past month. We lost a lot of wonderful women in October, ironically, Pinktober. So that's, that’s the hardest thing, because the metsters can't get it done. We can't get it on ourselves. We have to have early-stagers on board with us. We have to have people that don't have cancer on board with us to understand the need specifically to save patients who are already sick. Because prevention is not going to help us. Being vegan is not going to help us. Drinking more water, getting exercise, thinking positive, none of those things are going to stop the disease at all. We need researchers to help us do that. They need funding. We need to make an appeal to where that is as popular is going to buy a pink blender. And the thing with the pink stuff is, more pink blenders doesn't mean more dollars.
Amy says build a support system.
Amy says build a support system.
You've got to build a support system, whatever that support system looks like, and be present with yourself. You know, give yourself time to grieve the situation if that's what you need to do. Try not to stay there as much as you can, and utilize all the support systems that are available to you. There are usually non-profits that can give you mental health support, that can give you help with any of the diagnostics that you need, that can give you help with your transportation issues. It's not a let-down to take help from people like that or from organizations like that.