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Vonn Jensen

Vonn Jensen

Vonn Jensen (formerly Emily Jensen) is a US-based cancer advocate and vanguard approaching advocacy through the lens of social justice. They founded the movements,  Flattopper® Pride and Queer Cancer, and work specifically with populations often disenfranchised or rendered invisible in the dominant breast cancer narrative. Using a variety of media, they have worked for visibility as a means of combating the marginalization that certain groups, such as the queer community, face during treatment. 

The week before my explant surgery, I found Vonn's Flattopper Pride feed on Instagram. I felt instant relief, as I saw another person feeling at home in their body with no reconstruction after a double mastectomy. Vonn's willingness to share photos as well as their dedication to normalizing this body type provided an incredible amount of encouragement and community as I stepped into this new version of myself. Vonn has been a constant reference point and solid support over this past year and, finally after meeting in person in Portland, Oregon, no doubt now a dear friend.

SAM: So, before we start, I would love for you to introduce yourself and let everyone know who you are and what you are up to in the world.

VONN: "Who am I? I am a breast cancer patient, that’s the most obvious, so I will start with that. I was diagnosed a little over four years ago.  I was 31 at the time, so it was pretty shocking. At the time, I had a really great experience with my surgeon and my medical team. I came to realize that that was not the average kind of experience. My surgeon was a queer woman of color who was very active in social justice movements so she felt like a huge ally for me in a lot of ways, beyond just supporting me medically. It felt like we had this shared goal of trying to get me healthy. So when I said that I did not want reconstruction, she never batted an eye at that. I never considered it at all. There was never a question about it at all. I had a time where I questioned whether I would get rid of both breasts, and that took me a little while to wrap my head around and eventually she did recommend that I have a bilateral mastectomy. I think I needed that final push. I wanted that. I wanted to have symmetry, but it wasn’t really in line with my value system. You know, I always say Occam’s razor, but in the most obvious way. Do the least number of cuts, and if I don’t need to have more surgery, then why should I? So I am glad that she gave me that final nudge. I’m glad I did that. It was the better choice, for sure.

So, I went through this process and probably a year after I had surgery I started interacting with other people who had surgery who [had also not chosen reconstruction]. I coined the term Flattopper, so they were Flattoppers, and I realized that their experiences were really different than mine. Getting to a flat chest was so difficult for them. So, I came to understand the ways in which the Medical-Industrial complex is trying to assert these hegemonic beauty standards at the expense of their own health, or mental wellbeing, regardless of their desires. It just became this thing that I was really fired up about, and so I realized that I had to do something about it. 

So, at the same time, I had this idea that I was going to refuse to be ashamed of my body. I mean, I was, I had internalized a lot of negative thoughts about myself."

After your surgery?

"Yeah, I was afraid people would look at me and think that I was a monster. That was literally a word I had in my head and that I said to myself, which is so bizarre now. When I tell people this, they can’t believe me. I mean, I’ve been topless everywhere. I’m obviously very confident now, but it took me a while. But, I still thought I refused to hide myself away, as though I am ashamed, I refused to do that. I remember the first time I really was topless, in any big way, was actually at Seattle Pride, in the parade. I don’t even get involved in that kind of thing. I just felt like it was this opportunity and I needed to push myself. I had like half an inch of hair after chemo and so I walked down the street. I was just wearing silver spandex and suspenders and boots. That was it. It looked great. And, you know, a lot of things came out of that. A lot of people took my picture and it ended up being all over the internet. And it was so bizarre to me. But, everyone thought that I was trans and that’s why I had this flat chest. I had a relative who lives in Northern Washington and she was talking to her co-worker. Her co-worker was saying, “Oh yeah, I was at Seattle Pride, and I saw this trans person kissing a woman. Look at this,” and she showed her a picture of me. She had taken a picture of me and showed it. And, again, this person was like, I know them. Here’s a picture of us all together at Christmas. It was just really bizarre. I was really upset by it. I was upset that people were taking my image without permission and just sharing them all over. And also getting the story wrong."

Right, there was an assumption of what was behind it. 

"Right. Like if I had been a trans person and had a trans top surgery, I would have a completely different chest. Also, there was this complete denial of what I had gone through. I had a disease. So, it took me a long time to unpack that. Mostly the concept of people stealing my pictures was really hard to deal with. But then, I’d gone back to school intentionally because I wanted to do activism work and writing work around this concept, around these ideas about gendered disease. I realized that what people were responding to was not what I was writing, but it was my images. So, I thought that I would intentionally put out images of myself but then have a website so you can come back and land on, and read what I have to say, and attach my fucking name to it. I mean, it is fine if you want to share these pictures, I realize that it is actually helping people, but I deserve to be named. I deserve to be treated as a person. It is almost like inspiration porn. People think they are doing something good by sharing this picture, but they are not. It is just mindless clicking and sharing. 

So, that was the whole idea behind it and it led to two years of very intense activism and traveling and never slowing down until right about now."

How did you feel through all of that? Physically? Were you feeling well when you are on that running journey?

"No, I wasn’t feel well at all."

Because it was close on the tails of your surgery. 

"You know, I didn’t start doing a lot of traveling until two years ago, and I definitely ran myself into the ground. Absolutely. I started to do more and more and then I felt this pressure. I didn’t even own a computer when I started, but I started this website and it wasn’t good at all. I put some pictures up and some stories and whatever, and people started to pay attention. Within four months of starting that, I was written up in forty-five countries of the world and so, I didn’t know how to deal with that at all. I didn’t really have a good support system in that. I felt this tremendous pressure to take every opportunity that I could. In my head, I thought phase one, year one, of this project that I am doing is going to be visibility, because you don’t see bodies like ours. That is damaging. That is a state of violence that is done to us. We don’t know our choices because we don’t see them. And if we do see them, we don’t see them in a positive light. So, I thought, visibility. I thought every opportunity I had to take. I thought every interview or every photo shoot. I was keeping myself on European time in case I needed to be there for an interview, or at least East Coast time. I needed to be up at all hours of the night to do these things. It was really bizarre, but I understand. I felt like if I didn’t keep the momentum going that it would stop. And I thought, I don’t know if my body is going to keep being able to do this, but I thought well, “You know what, if this is all I’ve done in the world, then I’ve left a legacy and it is enough.” Now I don’t feel good about that thinking. Now I look back and that feels fatalistic in a way. I just felt this tremendous pressure, and I couldn’t stop. It was like a mania, you know? 

For example, I had been in Europe one time, when I went through a few different countries and I had broken my toe and I had lost my voice and I had hardly slept. I was covered in mosquito bites. Italian mosquitos are phenomenally bad."

They are the worst.

"I was really allergic and I’m just swollen everywhere and I have no voice and a broken toe, but I came back into Seattle and there was someone visiting who I had met online. I wanted to meet them and do a photo shoot. So, I got in at night, went to a bar to meet them and got up super early to do a photo shoot. I did a photo shoot within 10 hours of being back in town after having traveled in Europe for like 20 days. That was the kind of pace I was keeping up. It was absurd."

Do you think it was more driven by the service to the project and what you wanted to show, and/or was there also a part of having come off this moment in time when your life was also in question?

"I think it was all those things. Not just both, but I think there is a lot in that. I also ended a really long relationship so that was something I didn’t process. Keeping that pace allowed me to not process it, and I didn’t really have the chance to deal. There was a lot of running, and I don’t think I was really aware of that. I think there is also just a huge sense of responsibility. I think I also had a lot of guilt that I was getting so much attention and I thought well there’s a lot at play here. I’m an attractive white person. I don’t mean that in an arrogant way but this is the kind of look that is privileged in our culture. And, I look young for my age. So I had a kind of guilt about that. I thought, if I have these privileges, then I have to leverage them to help people who don’t. So there is that. 

Also, at one point, I’d had a lot of chest pain. Post-mastectomy chest pain was something I did not know existed before I had my surgery. So, I was having really intense chest pain, and my oncologist said I had to go get images, and it sounded like metastasis. They used this word, and she said it in such a way that she felt like it could be or it is likely that. And so, that was in the summertime and it was in the height of when all this was going on and I just thought, there’s no way I can stop. There is just no way I can stop and get this checked out. So, I didn’t. That also led into me just running. I thought if this is a terminal disease anyway, then I am just going to go out with a bang. Like burn the candle at both ends running because I might not get the chance again. I didn’t even let myself think about that until I came back in the fall and stopped. I did this European tour and then I traveled to the East Coast, and I got really involved with metastatic advocacy work. I spent a couple of weeks doing a road trip with a woman who is really big in that advocacy work as well." 

Was that just this past fall?

"No, a year ago. That October, I was traveling all over, and then I came back and found out I had what ended up to be just fibroadenomas on the outside of my uterus, but they were really big. I also had this fear of the stories I’d heard of these women whose cancers had metastasized in their abdomens and they don’t know it until they are on the operating table. So again, I thought in my head, “Well shit, I am making a legacy.” I remember riding in the car and the seatbelt hurt and I was bleeding, but I just kept going. That was another contributing factor. I just kept going, thinking, if this is what I got, then I’m just going to keep giving it my all. Then, I came back and had surgery a week later."

Did you know you were going to have that surgery?

"Yeah, I knew I needed to have that surgery. I just didn’t know how quickly it would happen."

The propensity to run is a really interesting one. Just hearing the trajectory of what you did after you were sick, I feel as if I did that for twenty years of my life until I did exactly what we were talking about earlier which was saying, “Ok, I just have to sit in this,” which is not what we are culturally encouraged to do. We are encouraged to get back out there and do and show up and smile.

"Get over it already."

Right, and show we are on the other side. Until we allow ourselves the space to feel all of it and show up with all of it and work through it how we best need to, it’s the lion or the tiger or the bear that is constantly running after us. 

"Yes, absolutely, and I think that is one of the most damaging aspects with a lot of medical trauma, but [especially] for women with breast cancer. They are not given that time to just sit and mourn. It is true of our culture. We don’t place value on the grieving process. I’ve been thinking a lot about that. If we are given the time to just sit and feel wrecked for a while, how significant that would be, and we would be so much better off, more readily, if we could do it.  But, there is that pressure to just get back to it, to be a warrior, that is damaging. Really physically damaging." 

Do you call yourself a breast cancer patient to not use the other terms that are often used?

"I feel like it is more accurate. I really like accurate terms, like amputation, as opposed to mastectomy.  There’s more of a gravitas to amputation as well. But, for a while I also resented that everyone wanted to hold me up as this survivor. I thought, “Yeahm I get it, that I’m like young and dainty, and that’s something that you want to see, blonde haired and blue eyed, but I don’t want to be your poster child.” I didn’t like to say “survivor,” because then people didn’t know where I was at in the process. I’m still a patient. You know? I’m still undergoing treatment for breast cancer."

You really are for life.

"Yes, right, and so I feel like I was denying them that opportunity, media people or journalists, the opportunity to seem as it was done and over, and to hold me up like that." 

Wrapped up in a pink bow. 

"Right. Wrapped up in a pink bow, and also because I think it is really important to spread more awareness of metastatic breast cancer, and so then that always gives people pause to wonder about it."

Will you teach us more about it? Help people better understand the community that you are tied into and experiencing? What exactly that [term] means and the distinction.

"Yes. Right. It is interesting. I started doing work around queer cancer. I call it queer cancer, because I feel like it is a marginalized and oppressed community within the cancer world. And then as I learned about metastatic breast cancer, I found that there are all these similarities. They are also marginalized and oppressed, as people don’t want to talk about it. People don’t want to look at that. So, thirty percent of breast cancer patients who had early stage cancer will go on to have metastatic disease, and when you have metastatic disease, your chance of dying from it is 98%. Your average life span after diagnosis is something like 33 months, so it is huge. It is also more common in younger women. So almost all deaths due to breast cancer are due to metastatic breast cancer, but we don’t talk about it. Metastatic breast cancer is when it has travelled to a distant organ in your body, usually lungs, liver, bones, brain."

So regardless of breast tissue being gone it is moving to another?

"Yes, and it is terminal. You can treat it, but it is terminal. It is kind of like the red-headed stepchild in the breast cancer world. We have a million pink marches, and we talk about breast cancer all the time and survivorship, but we don’t talk about people who are terminal. I think there are a whole lot of levels behind that; one being that it is really fucking depressing and hard to face. I think it is hard for people to face, and I think it is largely about marketing and capitalism, because we can make money off the ribbons and races and all these things. We can sell products and people can feel good again. It’s like the inspiration porn, but you aren’t going to feel good looking at someone who is on their death bed. My friend Jenny is in Texas right now, and they don’t have death with dignity acts there, so she is just sitting, waiting to die. No one wants to look at that, so we don’t see that in media. So, the things that we know about breast cancer, we know because we see them in media. It is this community that is just really disempowered and treated badly, so just a small amount of breast cancer research goes into that. Susan G. Komen, who is the largest organization outside of the Federal Government who gives money to breast cancer research, gives about 2% to metastatic breast cancer research. So, you are looking for a breast cancer cure, but you are not researching the thing that would actually save lives. Even the Federal Government is only giving around 7%. It doesn’t make any sense."

LISA: What are they researching?

"Early prevention. All the money is going into early detection and early prevention. We have had up to 40 years of increasing mammography and early detection techniques, and yet the death rate has not decreased. So, it would make sense, it would be logical, to shift that funding."

Right. Because probably the margin on the front end is helping but the percentage of cancers continues to go up, across the board, in all areas. That’s pretty shocking. 

"It is pretty shocking. So when you learn something like that, when I learned that, I was shocked by it, and I couldn’t not do something." 

Right, and I think there is such a sense of helplessness around all of this. Wherever there is the opportunity to stand up and have a voice on behalf of your own experience and also of your peers and friends and other people in this community or wherever you feel disenfranchised, obviously, there’s this sensation of wanting to make that happen in any way that you can. 

What made you stop running running running, though?

"Well. Hmm. It’s hard to pinpoint a thing, I guess. I was very conscious that I was shutting down and not making space for certain things that were coming up in my life, because they would detract from my ability to do the work that I was doing. I just prioritized [the work] in such a way that it was above my own health, as I think I have explained, you know. And even in terms of romantic relationships, I decided that I don’t have room in my life for both of these things, so I’m just going to cut that out of my life, and then I realized that that was really unhealthy. I mean, maybe it would be ok if I dated somebody. That was kind of part of it. I don’t want to put too much pressure on that, but I did start dating somebody and it made me question that logic. A lot of my running had been caught up in my not being able to process the big breakup that I had had, and so it was sort of like finding somebody that I wanted to make time for in my life was huge. Thinking “I want to prioritize you” was really huge for me. And thinking that I actually could do these things in life, and I could be powerful in the advocacy world, and I could still have these nice things for myself, was a lot. I also realized that in order to do that, to date someone in any sort of meaningful way, I would need to process a lot of my baggage. I was hyper aware of that. I would say, “I don’t want to date, because then I would have to process all this stuff in the past.” I didn’t think of it as being bad for me. I realized that I didn’t just need to process so I could be present for someone else, it was something I needed to process so I could be present with myself. So, that was kind of the start of it. That woman was also someone who I talked about my work with a lot. So, through that, I started to realize a lot of things. That was a huge part of it. [The advocacy work] started off being something that I was so passionate about. I still am passionate about it. But I started to lose sight of what I was most passionate about and most skilled at or knowledgeable about. I felt this pressure to do everything. I found myself feeling guilty and doing things out of obligation and guilt all the time. It was driving me mad."

That’s never a good formula. 

"Yeah, and I was drinking too much because I needed to vent, and there were things that just weren’t lining up with what I needed to be. I was working in organizations and people in those organizations would say things that were really homophobic or racist. You know, I am in association with a lot of people because of advocacy work and so I’m kind of willing to overlook some things. Like, you are going to post some racist thing on Facebook and I have to determine how ok I am with that. If we have this common goal working for this cause, what am I willing to overlook? But it got to be way too much, especially in this year. Like the Pulse massacre, that was huge for me and I realized I was so out of touch with any LGBT community that I didn’t have people to turn to and the people who I was working with didn’t understand how that affected me. That was hard, and then [there were] all these bathroom issues. There were huge things that really affected me, and I realized that I needed to spend more time thinking about it. I felt, “You know, I’m not willing to do these events out of obligation and guilt when you are saying racist things to me. I’m just not willing to do it.” Or when you don’t use the pronouns I’ve asked you to use for me. Why am I giving so much up? I felt like I was doing so much work for these communities who, in the end, would just treat me as a disposable piece. That was a big realization that I had. So, it kind of gave me the freedom to step back and say, “Ok, I am going to invest my time and myself into the communities that actually are fulfilling and will feed me as well,” and I quit so much in such a short period of time."

It was really great freedom and just giving myself permission to do that was huge. To say, “It is ok, you don’t have to do everything for everyone.”  

It’s another way of being an advocate; being an advocate for yourself, and you are standing up for those beliefs in walking away from something and you are teaching. Whether people want to learn the lesson or not. Whether they are taking in the issues of pronouns or whatever else, who knows if walking away makes a difference or not, but it draws a line in the sand. You are saying, “Hey, I’m a person. This is what I believe in and, if you are not going to respect it, then I am going to pour my energy and love into something else.”

"Right, and when you are doing that many things, you aren’t doing them well. I wasn’t doing anything well. So, I run this support group Queer Cancer and I hadn’t been spending any energy on it. I wasn’t doing any writing about that which is something I had wanted to do all along. It has always been the most important thing for me. I hadn’t written for so long and I was doing these things that I wasn’t passionate about, and I wasn’t doing them well. I realized here were all these people who would really benefit from me being present for them and who would also give back. So, that has been really rewarding. I’ll try to explain…I haven’t always been… I mean I am a queer person, but I haven’t always been into the concept of the community. I mean, I’ve always felt like we are all people. This is not the most fascinating thing about me by any means. It is just another quality that I have. But, it has now become something I feel that I have to organize around, because it sets me apart so much, more and more. It is strange that I feel that way as I get older, but I do. So, the story I came up around it is this. Imagine there were these cancer patients and they needed this new building erected, like this new center for cancer treatment. And I am doing all this hard work and I am building it brick and mortar. So, we do this building and the building is erected and we all go inside. But I have mobility issues, and there is no elevator or no ramp. And so, I can’t get into the building. I am looking up at them and I am so excited for them, waving up at them, but they are not looking down at me at all. So here I am, and I have no access to this thing that I have built.  There’s no recognition that I was part of it. I can just go away. That’s really how it felt. So, if that is how this section of the advocacy world is going to treat me, or the larger advocacy world really, I don’t mean to pinpoint any group by any means, but that is what it is. You just felt so disposable." 

I know obviously that you have thought and you have lived so much of what not doing reconstruction may or may not define, show the world, about gender and perceived issues around sexuality and identity. I think so much of the discomfort around this as a choice is that there is an assumption that it makes a statement about perhaps who you are. And so, do you think that mainstream, not even America, but the mainstream, has issue with that? If a woman does not have breasts, what does that say about her femininity or her identity? So then, in stepping out, I know in this past year, I have really sat with it. I feel more comfortable in my body, than I ever have before, without breasts. My recollection of when I had my “real breasts” is faint, if not non-existent. I had this in between phase. I recall, and my stepmom and dad reminded me, that the second day after I had my preventive double mastectomy, that I looked down and said, “What did I do?” I don’t remember this because I was on so many different drugs. There was no regret in that. I think that was my one moment of recognizing mourning or shock or just this huge transformation that had happened. Then there were eight years where I completely did not identify with the literal Barbie-like fake ones that I had elected to get. So now, in the space of feeling more me, more in my body, after [the explant], I’ve been sitting with how am I being perceived. I think some of society’s discomfort with it is that if you are happy that way, then does that mean you are queer? And if you are queer, then I don’t know how to deal with you because that makes me uncomfortable. 

"Yes. That’s the crux of it for me. What’s most interesting to me is the gender aspect. So, doctors say to people that you are going to be gender confused if you don’t have reconstruction. That is a very common thing. People often get really upset about it. [Some] doctors can get angry if you don’t want to have reconstruction. I’ve heard these stories over and over.  I’ve actually been in the office. I went as a live model once with a friend who had one breast because one of her implants had failed years earlier and she didn’t even know that her insurance would pay for her to get rid of the other one. So, it was a long process and I went with her to her plastic surgeon’s office [to show the surgeon what she wanted to look like]. That was a once in a lifetime thing." 

I may have showed my doctor your picture. I don’t remember. 

"I know people have used my pictures, and I offer that. I’ll offer that to people. But being a live model, that was a once in a lifetime thing. She actually painted my chest. I need to write that story sometime. So even for that plastic surgeon, who wasn’t really resistant, but even her bit of resistance, because there was some, and I was there to advocate for this person in case that happened. It was more that she was disappointed. She has this pride in her work and she was like, “Really? But it looks so great.” And if I hadn’t been there, I think it would have been a really different conversation. She was just looking between us and was, like “Alright.” You know, shaking her head. 

Back to the gender stuff. I make the argument that breasts are the most policed and politicized body part. We’ve been fighting for reproductive rights for a long time so you could make that argument as well. But we don’t see what’s in a person’s body. I mean, I don’t have a uterus but you wouldn’t know that unless I told you. Whereas, you can look at a person and see if they have breasts or not. So, it does become very confusing because people do associate breasts with women. Well, men and women have the same breast tissue. So that’s an issue to start off with. There are certainly men who have larger breasts than I had.  I think that that’s a really productive thing, though. Even for a very straight person, not having breasts, having a non-normative female identified body. Queer is our concept of gender. And so, for a lot of people that is really scary. 

But for me, I think that is the hopeful and exciting thing. We need to shake up gender.  These taken for granted assumptions about gender are damaging to all of us so if we can shake them up that is fantastic, but most people don’t want to shake that up. Most people have this sometimes almost violent reaction to seeing a breastless body. It’s like it offends their sense of order in the world.  Like, woman equals breasts. That’s it. It differs based on who the person is. Like for me, people often just think I am trans, or don’t notice that I don’t have breasts, or it doesn’t seem as odd on someone like me. Being thin makes it less noticeable as well. I’m sure people don’t notice it as much on you, too. But on a 60-year old housewife or a grandmother, they are more likely to see it as breast cancer related. It can definitely offend people’s sense of what the world should be."

I find that part of it curious, regardless of how the assumptions land. Obviously, assumptions are made all around, not just on this subject, it is what happens in our society. I find it just curious that in this day and age, and again, look at what has happened this year, so perhaps that is a completely asinine statement to be surprised. It troubles me that so much is projected onto it. 

"Well, we go to great lengths as a culture to enforce these hegemonic standards for gender. Short hair is for men. These are men’s clothes. They aren’t men’s clothes. They are just clothes. Clothes don’t have a gender. Inanimate objects don’t have a gender. So why do we try to assign that? The aisle for girl’s toys. The aisle for boy’s toys. Well, at the end of the day, it is all just plastic crap with different colors. So why is this color associated in a certain way. So, for me, it comes down to there must be some investment in it. Capitalism. How can we market to people? That’s a lot of it. But then, why do individuals internalize it so much? Why do we get so caught up in it? And why is it so important? We look at these things, like breasts, like hair, like clothes, these heuristic shortcuts to reading someone. We just decide as a culture that certain things have certain meanings and we need to abide by that." 

I think that is exactly it. I think it goes back to when you are in the doctor’s office and you are being given your options. You were fortunate enough that the conversation was different. But I don’t remember in that first conversation if that was even put out there. So, it was this kind of implants or this kind of implants, or, as I have shared before, some people are able to use their own body fat, which for me wasn’t an option. It wouldn’t have been for you, too, had you gone that route. If you are of smaller frame, it is just not in the cards. So, if you are of smaller frame, it is this implant or this implant, because that is what makes people happy. And I wasn’t in a place in my life where I was thinking beyond what just was being told to me. I was completely outsourcing what was going to make me happy in so many ways. That was how I was just running from the trauma of having been diagnosed with cancer at age 21. I had spent a decade totally shut down and asking everyone and society for the answers. And that happened in that room. So, I just said, “Ok.” I’m not feeling that [what I chose] is right for everybody. I just feel that everyone should be presented with options. I have friends, as I am sure you do, who have had reconstruction and feel great about it. I fully support that. However, having the options presented with full information, unbiased information, about what also comes with the risks of getting the silicone, because that piece is just left out. I think that is a crime. It is unfortunate. We are told the side effects of the surgery. 

"Yeah, I feel like there’s a lot of dishonesty around implants. People are not often told that they are likely to have multiple surgeries, which is often the case. They are not told what the rate of rejection is. And so, that is a distinct violence done to someone. If somebody thinks they are going to have just one surgery, that is a completely different decision. “Oh, I’ll just have this one surgery to have my fake breasts put in.” But, if they don’t know that they are going to require multiple surgeries, that, “Oh, you are going to have to switch them out every seven years.” If you aren’t given that information up front, that means you are going to require more surgery. You are going to require more violence on your body in seven years. Surgery is violence.  The issue is not about what is better or worse. There are no medical benefits to having implants. That’s true. I’ve gotten doctors to say that. I’ve screen shot it. It makes me very happy. That’s true, but that does not mean that there are not other benefits. That for many women, it is really traumatic not to have breasts." 

Right. That’s hugely important. That’s why all along I have emphasized with Last Cut that for me, focusing on the explant, has not been making a statement of what I think everyone else should do. For me, it has been the perfect metaphor for talking about when something is out of alignment with who we are and then taking action to modify that and correct it so that, as an individual, we feel more whole and at peace. I completely think it is the individual part that ties into everything. It ties into a conversation about politics, everything. For me, that’s what it comes down to. That’s where the shock and disbelief is. Why can’t everyone support everyone in just being who they are? Enter the rainbows and the unicorns. Obviously, that’s a very idealistic hope for how everyone would operate, but can’t we just get out of everyone else’s business?

"No, we can’t though because there is a huge investment, a financial investment, in controlling women’s bodies. Think of how much of our economy is based on the medical system and pharmaceuticals. I think it is like twenty percent of the US economy. So, there’s that. I mean, people are making a lot of money off of this. The fact that we have been increasing early detection exponentially for forty years and the death rate hasn’t changed, tells me that there is huge financial gain to be made from people dying. That’s the truth in the matter. [It is] the same thing with these surgeries. Doctors have an investment in wanting women to look a certain way. There’s the monetary aspect of it, but there is also this need to maintain a woman’s form and what we think of as a woman’s form, and that comes before thinking about, again, about a person’s mental wellbeing or their physical health. And why is that? So, then you go back to our value system. Why are we so personally invested in a woman’s body looking a certain way? I think it is just this binary of male and female that we work really hard to maintain, because it wouldn’t exist if we did not push it in all of these ways. This is a really fantastic example of how we push to maintain that binary."

Yes.

"I don’t necessarily feel that people look at a person with a flat chest and think they are queer necessarily. I think if you add in other factors, I have a number of them, then, yes, you’d make that assumption. That’s definitely true. But, I do think that I hear women say that they work really, really hard to feel feminine again after not having breasts and that’s interesting for me to process and try to understand."

What actions do they take to work really hard at that?

"Yeah. So much of it has to do with their partners. If I ask these questions, I’ll hear “Well, it’s my husband.” It’s never about their desire, their want. But even just like dressing in a more sexy way, they might be more prone to wearing makeup, dressing up, amplifying the other outward signals of femininity. Yeah. I’ve been in situations where people did not want to be photographed with me because they did not want to come across as queer. They thought if they were seen with me, then they would be seen as queer.

I did a big photoshoot that I would not allow myself to be a part of. I angered a lot of people in that. That is also a good Last Cut story. So, there were 14 of us, we were all Flattoppers, and at the end of it, I was told that I was not allowed to use any of the photos. It kept coming back to stuff all about sexuality, which didn’t make any sense to me. Like, it wasn’t a queer project. I’d never said it was, that was not what I was trying to do. It was about people. I remember them saying things like “These women worked so hard to regain their femininity after breast cancer and now you are going to take it away by making them look queer.” How does that even make sense? How dare you talk to me like that? I am a human being and deserve better. That doesn’t even seem logical. Being seen as gay or whatever doesn’t mean you are less feminine. Where’s the femme visibility? There’s a lot of queer femmes out there. And do you think being a sexual minority would make you less feminine? Or being pictured with someone who is a sexual minority would make you less feminine? Our bodies are pretty much the same. 

These behaviors might rub off…

"Well, I tried {laughs}. So, yeah." 

LISA: That takes me back to learning about gender and queer politics. What about femme queer? That’s been around forever.

"It’s making a comeback. It’s been great." 

LISA: Which again, begs that same question, that less is obvious to the eye. 

"Right. That is a really interesting comparison, too. A few of my exes actually work around the issues of femme visibility. They feel like they are almost ostracized. They seem less-than gay because they pass. It is very interesting. 

The worst interview I ever had was pretty early on, and when I realized I could actually be sassy in these interviews, I could just be myself and I didn’t have to be as passive. The woman clearly had no idea how to talk to me. She clearly did not know how to understand any of the gender component stuff. She said something like, “Well, now that you don’t have breasts, what do you do to feel more feminine?” And I just stopped, and I was looking in the mirror and I said, “Well, how do you, as someone with breasts, work to make yourself feel feminine?” I just flipped it around on her, because it was just as absurd, right? And she made this terrible awful giggle and tried to diffuse the question. I said, “I don’t do anything to try to feel more feminine.” Then she said, “What do you do to feel more like a woman?” I said, “I don’t feel like a woman, and I never felt like a woman. You never asked me that. And how is that relevant?” It was just like so absurd that that was the question. Why does that matter? Why don’t you ask me what I did to feel healthy?" 

LISA: God, I feel like you could just go so meta on these questions. Like, what does it even mean to feel like a woman? What does that feel like?

"Right. And that’s why I love the conversations that open up, because what does it mean? I shut down all of my female hormones. I don’t have a uterus. I don’t have breasts. What am I to you? Sometimes I just want to ask people, “How do you see me?” I was at the hot springs the other day, you know, naked in public, which is how I always want to be, of course {laughs}. And I just had this urge, I don’t know why then more than other times, but I wanted to ask people, “What do I look like to you? How do you perceive this body?” I don’t want to invade people’s comfort, but I just really wish I could do that. I just want to ask. 

Right? What makes a woman? What make a person the gender they identify is how they feel. How they identify. That’s it. It is really very simple. So being able to divorce gender from body parts is a very meaningful project and I’d like to work towards that."

Is that what you are focusing on now?

"Yeah, definitely. I want to go back and get back into the theory of these things as well. That’s how I started out, with the theory and thinking about the ideas behind all of this. I think practice is so important but I believe the world has changed their ideas. We give them words to shake things loose and that’s how we change things. I need to get back to doing more writing and doing more exploration in that way. Having these conversations with people and putting more written material out." 

Yes, Please.

"Yeah, you know and giving myself more permission to focus on what I am most passionate about. I read a paper that I wrote two years ago and it was just amazing. I forgot that I wrote that way, that I can write that way. I was just so excited and my theory brain was enlivened by it and I thought, “Why have I gotten so far?” I’ve gotten so far because I’ve been trying to do everything for everyone else, and that’s a huge reason why I think so many people get implants. This is a disease where we don’t get the privilege of thinking about our own needs first. And that’s a thing you hear over and over and over. You said that, too, in thinking about your reconstructive options, thinking about how it is going to affect other people. There’s something really wrong with that. There’s something really wrong with a culture where people who are perceived female aren’t allowed to think about what is going to feel good to them, or look good to them. Why am I concerned about how it is going to affect you? Even Audre Lorde [talked about this]. Her book is as old as I am. She wrote it in my birth year. The things she wrote about in The Cancer Journals are things that are so relevant and true today. A nurse was upset with her because she wasn’t wearing a “foob,” like a crocheted fake breast, because she had only one removed. This nurse was upset with her for coming to the cancer center and not wearing it. It was all about how she was affecting the other patients. “You are going to alarm them. You are going to make them uncomfortable.” That’s at the heart of it. You are going to make people uncomfortable with your body. There are stories of women going to a restroom. “What if someone doesn’t recognize that you are a female?” It is all about how your appearance affects somebody else." 

And their perceived sense of safety. 

"Yeah. But don’t I have autonomy over my own body? Isn’t it mine, ultimately?"

Well and this idea of normal.

"Right, and these huge lengths that we go to maintain normal. So, if it was really just normal, we wouldn’t have to go to these huge lengths to get to it." 

Right, because each of us are normal in our own way, or not normal in our own way. 

Ok. So, what’s most true to you in all of this?

"I feel like what I have come back to, or come into, is honoring myself first, which is something that I never knew how to do. I’m still learning it. It’s really amazing. Yeah, the concept of self-care. I can talk about it over and over and tell people what to do, but radical self-care is revolutionary. So, I think the things I find most important are passion and desire, and possibility, and being in line with those elements. I need to be doing the things that I am most passionate about because that’s where I can make the most difference. I feel like desire is the guiding force behind everything. I mean, desire makes me drink. Desire makes me breathe. It makes me form connection." 

What does radical self-care look like for you? How do you define that?

"Right. Radical self-care is choosing to put your own needs first. Realizing that you can’t help others until you’ve helped yourself first. How can I go out and be a spokesperson for healing and recovering from breast cancer if I haven’t done it myself? That seems absurd, but that’s what I have been doing. Everyone says put the oxygen mask on yourself first and I understand that, but, like, how could you? How could you in that moment?"

It feels so selfish.

"It feels ridiculously selfish, and I think that’s something that we are taught when we are brought up women. We aren’t taught to put ourselves first. So, doing that, just putting yourself first is revolutionary because it goes against the grain of our gender norms, again."

Well, then we are in a position to serve. Not serve others necessarily, but to serve the mission, the desire, what we are passionate about. Because otherwise as I have learned, as you have learned, as Lisa has learned, you can be running, running, running, doing, doing, doing, but if you aren’t taking care of yourself underneath all of that, while that is happening, there’ s eventually a huge burnout, whether it is physical, mental or emotional. And then in the end, the mission isn’t being served. So, it is service to other people in a universal way, but if we are not taking the time and finding ourselves worthy of that care to begin with, it bottoms out. 

"Yeah, absolutely, and I love the concept of less being more. In a million ways. In my body, in my thoughts, and in my actions. If I can do less, then I can do it better in a way that is reenergizing instead of just taking from me." 

Amen. That’s a big one. 

You’ve alluded to more than one Last Cut that you have made, and as I talk about and write about, I think we make these significant decisions to bring the internal and external world into a more congruent state constantly. It can be a decision of what to eat or not eat, or where to go or not go, or obviously, there are ones in life that have to do with our bodies, our movings, our relationships or what to do with different groups. So, certainly, you spoke about the advocacy world and this, that and the other. Is there a specific Last Cut that you wish to share?

"I’ve thought about this question a lot. What do I want to talk about? But then I think, what am I actually feeling? What would be significant for somebody to hear? So, there’s this debate happening. I think, if somebody is going to listen to this, I want them to hear this great idea. But I am also an emotional person and there is that, too, you know. Like, some real Last Cuts.

I’ve ended a lot relationships that were really toxic to me, also for similar reasons where I didn’t feel honored or respected or it wasn’t worth what I was giving up. I was giving up more to have these relationships than what I was gaining from them. So, that was really big. It was really painful because it just felt like more and more and more and more loss. There was intense loneliness because of it. But I firmly believe that you have to be open to possibility and, if my life is full of these toxic relationships, then I am not open to new things coming in. So, that was another experience of just sitting in that and feeling very alone and lonely and isolated, which is really extremely hard for me. Just feeling that and deciding that that was better than continuing on with friendships and relationships that didn’t feel good to me. Yeah. It was really sad for a long time, but now it feels extremely liberating. I feel like I stood up for myself. You know, like I stand up for everyone else, but it was really hard to learn how to stand up for myself. I still feel really lonely. It is still hard. But now, being on the other side, it feels much better. This constant pang of micro-guilt and things I had around these interactions. 

I spoke about dating a woman this year, which was really fantastic and a really good learning experience for me, because I definitely I had decided that I wanted nothing to do with romantic love. Like, it’s going to take away time. It is overrated. We just made this up in culture so we can sell Hallmark cards, whatever. You know, there are all these different elements. That’s not how I wanted to spend my time. You know, it was really amazing to realize that I did have capacity to open up in that way again. It was good to realize that I have that capacity. I also learned that I was carrying a lot of baggage and so I realized that I was not able to maintain that relationship and I didn’t want to let that go. There was so much possibility in that relationship and I didn’t want to lose that. But then there was so much thinking. Is it about this person? These scenarios? Or is it about my attachment to these possibilities? So, there was a lot of introspection and it ended up being a relationship where we shifted to being friends.

At first, I would say that’s just therapy-speak for dumping me. but it ended up being a very mindful and intentional shifting. We spent a lot of time together talking and processing it. So, I acknowledged that because I had been running [and] because I had been living my life that way, I couldn’t show up and be present and there were a lot things that were really triggering for me. I had to sit and process those things before I could heal myself, yet alone heal myself enough to be a positive influence in a lover’s life. So, that was a really intentional Last Cut that I feel good about. It feels really painful but also painful in an intentional way that feels like growth. Growing pain that I think will open up a lot of opportunity, possibility for me, you know? Being able to have a separation in that way and have it be so kind, to be present with someone in that way, was really amazing for me, for both of us. So, it was also good to have, after all these sloughing off of old relationships that weren’t serving me, to have this different type of separation that was really positive and intentional. 

I think that is beautiful to have these opportunities to learn another way and to do something in a different way. It’s an incredible gift. 

"It felt really cliché. Here’s a person that I had so much love for, but I couldn’t really express that in a romantic relationship, and I can express that in a friendship in a really profound way."

Well, I think so much is at stake when it is an intimate romantic partner. At least in my own experience, those have been the circumstances where I have lost myself the most because of how tied up and twirled up it all gets. 

I love that that’s the last cut that you are sharing. I think it is such a profound one because it sets the stage for how you are interacting with life by holding that self-care, self-honoring piece, and the honoring of the other in a really precious way. It is really both. It is a beautiful one. 

"If I hadn’t had that motivation, I would not have started to deal with this stuff. I wouldn’t have done it. So, you know, that was the motivation, but ultimately I’m not doing it for someone else, I am doing it for myself. So, I don’t know that I would have ever gotten to that point otherwise. 

I didn’t really talk about the things that I thought I might, but I also have this sense, which has been a theme of mine this year, which is to show up as the situation presents rather than try to force a situation. It’s also been really rewarding. So I guess this is another example of that. This is the conversational opportunity that happened."

Will you speak to pronouns? 

"Yeah. For most of my life, my adult life, I didn’t use my given name. I always used nicknames. I had friends who didn’t even know my given name and only knew my nickname. So, then going through cancer, everyone calls you your given name. And then I went back to school after that and so it was just easy to go along with that. Then, doing cancer advocacy, I didn’t want to go into a conference and ask somebody to remember another name, or a second name for me or like a different pronoun for me. I thought, everyone is dealing with chemo brain here, or they are really overwhelmed, I’m not going to put more on them. So, I felt a lot of pressure to conform and I didn’t always realize…I think it was compounding, and it became more and more difficult for me. There were stories like the one I shared about the photo shoot in Berlin, that were really traumatic. Things like that would come up. Like, I was working on a magazine project and having a really hard time asking these people who were claiming to be my really good close friends to use neutral pronouns. 

In August, I got really sick. I had kidney stones and I had to have an emergency surgery. I woke up and I don’t even know who I said it to, somebody pushing my gurney, the first thing I said when I woke up, I grabbed their hand, and I think they said my name or something, and I said “I don’t associate with female pronouns.” And I thought, “Why is that the first thing I said?” I was terrified of that surgery. I’ve had a lot of surgeries and, for whatever reason, that was the scariest one for me. I thought I might not wake up out of this. What do I need to say? What text do I need to send right now?"

LISA: What was the actual surgery?

"It was really minor. They put a stent in from my kidney to my ureter. It was the way that they all treated me. They looked at me like they were scared for me."  

And I’ve heard that is incredibly painful.

"It was incredibly painful and there had been a misdiagnosis and another doctor that was really terrible to me. There was a lot to it. But, I realized that for me to wake up out of a surgery where I thought I was worried I was going to die and that was the first thing I said, clearly that was really important to me and I needed to honor that. I thought, “Well, it is time.” And I had been talking about this with people, but this time as soon as I could type, I got on Facebook and I was like, “This is how significant this is to me, and I feel like I have been hiding this part of myself and not able to ask for what I want. I’m using a name that I don’twant or like and I am doing it for other people. And this is what I want. This is what I want you to call me.” 

So, yeah, I prefer gender neutral pronouns, which are they, them, their. People will argue that that is not grammatically correct, but that’s not true. It has been in use forever, even Chaucer used those pronouns. And that feels much more comfortable for me because I don’t feel like I have a gender. I feel like it is all just socially constructed and sometimes I feel like I do things that can be perceived as gendered but for me, myself, I don’t feel like male or female. I feel like a person. I feel like me. I feel like I am one person. I don’t mean to be like, “Oh, I’m a snowflake. We are all snowflakes.” But I do feel like that’s my gender. My gender is Vonn. So that’s been a really interesting process of asking people to use those pronouns. I have a lot of guilt. People feel bad and say they have a hard time, because it just doesn’t sound right in a sentence. Sometimes I will give people a free pass but then I think, “Why? Why am I doing that? That’s not what I want.” I think a lot of people are using different pronouns now and I’m really working on not having guilt for asking for that. People get nervous. They get worried they are going to shut down conversation. I want them to be able to open up a conversation. I want them to always ask me and I’m not going to be upset with them if they say the wrong pronoun."

 

 

 

 

 

 

Vanessa Cuccia

Vanessa Cuccia

Emily Mackenzie

Emily Mackenzie